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A multiple case study of the children and families in the Infant Development Program of British Columbia Pighini, Maria Josefina 2008

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A MULTIPLE CASE STUDY OF THE CHILDREN AND FAMILIES IN THE INFANT DEVELOPMENT PROGRAM OF BRITISH COLUMBIA by MARIA JOSEFINA PIGHINI A THESIS SUBMITTED iN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in The Faculty of Graduate Studies (Human Development, Learning and Culture) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) September 2008 © Maria Josefina Pighini 2008 ABSTRACT In this qualitative, retrospective study the experiences of a purposive sample of six families of developmentally at-risk children, between birth and school entry were examined. Children were followed up by consultants in the Infant Development Program of B.C. --a Provincial, early intervention, home-based, family-centred program serving families with developmentally at-risk children ages 0 - 3 years. Multiple sources of data collection were used including file reviews, focus groups, and individual, semi-structured interviews with participant parents. This researcher anticipated that it would be meaningful for parents to relate to these experiential issues; and that their responses would provide insights to the research questions posed on their specific experiences with early intervention. Member-checks were completed by participants throughout the data collection and coding stages. Thematic content analysis was used to interpret the themes from throughout the focus groups and interviews, followed by a rigorous process of inter-coder reliability. The findings of the present study raise issues in identification, referral and follow-up for developmentally at-risk children. The findings support the implementation of a primary level intervention system that probes and supports parents and service providers in identifying what are areas that need follow-up — and why and how to address those immediate needs. 11 TABLE OF CONTENTS ABSTRACT.ii TABLE OF CONTENTS iii LIST OF TABLES vii ACKNOWLEDGMENTS viii Dedication x Chapter I: The Problem 1 Introduction 1 Background and Rationale 3 Purpose of the Study 5 Contributions of the Study 7 Meaning of the Study 9 Definition of Terms 11 Research Approach 20 Overview of the Study 21 Chapter II: Literature Review 23 Introduction 23 Research on Developmentally “At- Risk” Infants and Children 24 Research on Developmental Screening! Surveillance and Assessment 27 The Need for Early Intervention for Developmentally At-risk Children: Current Research and Practices 35 Early Intervention Programs in BC 38 Overview of the Infant Development Program of BC 40 Research on Families with Developmentally At-risk Children 47 Significance of Literature Review to the Current Study 52 Chapter III: Method 54 Introduction 54 Paradigm of Science: Post-Positivism 54 Multiple Case Study Approach 58 111 Ethnography .59 Research Design 64 Procedures 65 Participants 65 Description of Final Sample (Participant Children and Parents) 74 Data collection. Stages One and Two 82 Phase 1 File Reviews 86 Phase 2 94 Data Analyses 96 Content Analysis 96 Integrity of study 97 Dependability and Representation 99 Criteria for Evaluating the Worth of Study 101 Validity 101 Issues of Ethics and Rigor and Issues of Representation 106 Issues of Representation 107 Issues of Voice 108 Summary 109 Chapter IV: RESULTS 111 Introduction 111 Across-Participants Findings 116 Overview 116 Overview 125 Organization of Findings by Theme 128 Summary 132 Findings from Focus Group 1 133 Findings from Focus Group 2 and Interview #4 Concluding Question 136 Summary of Across-Participant Findings 141 Within-Participant Families Findings 142 Overview 142 Family 3 143 File Reviews. Child A 144 File Reviews. Child B 149 iv Focus Group1.153 Interview Accounts 159 Closing Comments: Focus Group 2 182 Family 3 Summary 183 Exemplary Case from Stage Two of Data Collection 186 Family 5 File Reviews 186 Interviews 192 Summary of Family 5 226 File Reviews and Interview Summaries 230 File Reviews 230 Summary of Family 1 Interview Responses 234 File Reviews 236 Summary of Family 2 Interview Responses 239 File Reviews 241 Summary of Family 4 Interview Responses 245 File Reviews 248 Summary of Family 6 253 Overview 257 Summary of Findings by Research Questions 258 Theme 1: Family Centred Approach and Home Visitation Services 258 Specific Research Questions 260 ThemeS: Effective Knowledge Translation in Sharing Information and Resources 261 Theme 2: One to One Relationship with Consultant/Therapist 264 Theme 3: Inclusion of All Family Members 267 Theme 6: Case Managing and Service Coordination 268 Theme 7: Stressors that Become Barriers 272 Summary 276 Chapter V: Discussion 278 Introduction 278 Significance of the Study 279 Implications for Practice and Policy 313 Introduction 313 v Implications for Policy.323 Limitations of the Study 325 Summary and Conclusions 336 References 341 APPENDICES 376 Appendix A: IDP Family Needs Survey 377 Appendix B: Closing Information Form 381 Appendix C: IDP Post Service Evaluation Questionnaire 382 Appendix D: Contact Letter(s) and Consent Form for Participants 383 Appendix E: Central Registry Form 391 Appendix F: IDP Referral and Waitlist Contact and ConsultationForms 392 Appendix G: Home Visitation Record, Family Contact Summary and Waitlist and Monitoring Group Summary 396 Appendix H: Scripted Questions for Parents Interviews and Focus Group Discussions 399 Appendix I: File Reviews and Comments to Reviewed Files 404 Appendix J: Model of Service for IDP of BC 414 Appendix K: Three Tier Response To Intervention Model (RTI) 415 Appendix L: Ethics Certificate 416 vi LIST OF TABLES Table 1. Family Demographics 76 Table 2. Interview of Parent/Guardian Participation in the Focus Groups, Interviews and File Reviews 85 Table 3. Seven Revised Themes; Research Topic and Summing Themes 114 Table 4. Families: Services Received and Transitions 122 Table 5. Focus Groups and Interviews: Categories and Sub-Categories 127 vii ACKNOWLEDGMENTS To the members of my committee, I express my deepest feelings of gratitude for their unique and wise guidance through the long and complex path of my doctoral program. To Dr. Hillel Goelman, my exceptional supervisor and mentor, for his inspiring insights, brilliant ideas, exemplary work, and unconditional support that made this journey worthwhile “against all odds.” To Dr. Kim Schonert-Reichi, a very special guiding mentor for many years, for leading me into the world of social and emotional development exemplified in her work, and for re-connecting this topic into my own research. Her inquisitive questioning has always resulted in my opening for new ways of thinking. To Dr Maria Buchanan, for her brilliant and artful guidance through the maze of qualitative research; with this ‘new’ research lens, I have captured so many different lights and colours. I am immensely thankful for her teachings. To D. Marion Porath I express my deep appreciation for her wisdom and ideas and for her guidance during the first part of this journey as my academic advisor. This research would have not been possible without the unconditional trust of Dana Brynelsen (DP Provincial Advisor), the IDP Program Steering Committee; Bonnie Barnes, and the consultants and staff at the lOP of BC. Heartfelt thanks and my deep admiration go to all of them.’ To the participant parents, for sharing their stories, opening their hearts and memories, and generously giving their time. This study is all about their families. I gratefully acknowledge the UBC Ph D Award, the Social Development Partnerships Program (Social Development Canada), the Hampton Fund, the Society for Community Research and Action (SCRA), the Human Early Leaning Partnership (HELP), and The Note: the names of the staff at the selected Infant Development Program are not included to protect the anonymity of the participant families. viii CHILD Project for their funding contributions towards the completion of my doctoral program. The inter-disciplinary wealth of my doctoral work has stemmed out of the invaluable experiences shared through my work with the community and academic members, post-doctoral fellows, and graduate students of The CHILD Project. I am deeply grateful to Dr Goelman for this unique opportunity. I am grateful for the encouragement received from my past and present work companions at Henry Hudson Elementary, HELP and CHILD. Special thanks to HELP’s Management and SDPP teams for their ongoing support; and to Brenda Poon for her invaluable insights. To Jamie, Shawna, Angela, Martin, Michaela, Jayne, David, Jennifer, Barb, Ellen, Anat, Cynthia, Raul, and Luis, hats off for your great help in shaping this study in different ways. To my immediate and extended family and to my very dear friends, I thank you for your support, patience, and encouragement. Special thanks to Donna for the many ‘reads’ throughout the years! I express my immense gratitude to my husband John for his invaluable gift of providing me with space to grow, and go about in my quest for discovery. To my daughter Maria Carolina, I thank you for inspiring me to open new doors of thought and knowledge, and even more so when confronting adverse times. Having shared this journey twice with them, here is my sincere promise that this is the last graduate degree. To my son Gwyn Alejandro, thank you for your quiet support and ongoing affection during wary times. To my parents, for instilling curiosity and love for knowledge, and for encouraging me to always go one more step. Your dedication and love will always guide me. This journey began thirty years ago, in Caracas, Venezuela. To Lic. Rosa Ferretti, Dr. Alberto AbadI and Prof. Marisela Hernández for planting the early intervention seed: I hope our paths will cross again. ix Dedication I dedicate this thesis to my family, John, Maria Carolina, and Gwyn Alejandro; to my mother, Yolanda Mirabal de Pighini, and to the families and the consultants in the Infant Developmental Program of BC. To Tracy Lynn Pedersen, quien sI sabe que ella existe In memoriam, Cesare Pighini In memoriam, Jackelyn Guijarro In memoriam, Mañana Luján Castillo, Estrella Maui x Chapter I: The Problem Introduction Over the past three decades in British Columbia, Canada and the United States, early intervention programs have been in place for children who are at risk for developmental delays or who have identified disabilities (Brynelsen, 1990; Brynelsen, Cummings & Gonzalez, 1993; Goelman, Brynelsen, Pighini, & Kysela, 2005; Marfo, 1995). Researchers have agreed on the positive effects of these programs in infants and young children who are developmentally at-risk (e.g. Butler, Chambers, Goldstein, Harris, Leach, et a!., 1999; Guralnick, 1998; Meisels & Shonkoff, 2000). Nevertheless, researchers continue to examine these programs’ impact on the developmental outcomes of this diverse population of young children (Coleman, Buysse, & Neitzel, 2006; Hebbeler, Spiker, Bailey, Scarborough, Mallik, et al., 2007; McCollum, 2002). McCollum’s (2002) work, in particular, has challenged a common assumption with regards to the effectiveness of early intervention. McCollum specifically questions, “What is it that works, in terms of intervention: Is it the type and nature of program, is it its intensity or its duration?” (p. 5). McCollum’ s examination of the effectiveness of early intervention guided the research topic of the present study. In this study, the researcher investigated parents’ experiences of an early intervention program, the Infant Development Program of BC, on developmentally at-risk infants and children and their families. Along this line of thought, some aspects of interest that were examined included the relationships between the Infant Development Program consultants as service providers and the children and families they have worked with, and, the influence of consultants on the 1 quality of intervention of the Infant Development Program from the perspective of the Infant Development Program families. In questioning how early intervention works, researchers have shifted the scope of the research in early intervention. This shift represents a response to a dominant ecological theoretical framework (Bronfenbrenner, 1979, 1986, 2005; Garbarino & Menzel, 2000). Researchers have also started to acknowledge the key role played by children’s families in supporting the implementation and continuity of these services (Dunst, Trivette, & Cross, 1986; Dunst, Trivette, & Deal, 1988; Dunst, 2000; Guralnick, 1998; Tumbull, Friesen, & Ramirez, 1998). More recently, in the US, a national longitudinal study has been launched to explore and understand the characteristics of children and their families receiving early intervention services and the communities where these services are provided (Hebbeler et al., 2007; Scarborough, Spike, Sangeeta, Hebbeler, Bailey, et al., 2004).). The general intention of this study was to examine the paths of children representing the range of developmental differences serviced by British Columbia’s 0- 3 IDP of BC: the Infant Development Program of BC. The study supports the current research that evaluates the effectiveness of early intervention programs and, at the same time, includes the family context in the study of early intervention. Through a multiple case study approach, this researcher listened to and explored the meanings of the experiences lived by parents of developmentally at-risk children who participated in the Infant Development Program of BC. It was anticipated that parents would describe the events and circumstances surrounding the time of their referral to the Infant Development Program; the time of discharge from the Infant Development 2 Program, and up to their child’s entering into Primary school. Thus, the intent of this study was to offer these parents a voice that would rightfully represent the unique needs of their families within their communities. This chapter provides the background and rationale for this study, as well as its purposes, the definitions of terms used and the study approach. Background and Rationale This section begins with an introduction on the characteristics of the early intervention documentation process in BC over the past 30 years, in order to better describe the intent and characteristics of the study. Data gathering in early child development in British Columbia and Canada has generally been inconsistent both at the program and intervention levels. This creates a gap in conducting both longitudinal and retrospective research on developmentally at risk children (Goelman, Synnes, Houb, Klassen, & Pighini, 2006). In British Columbia, the Infant Development Program’s Programs have collected invaluable medical, developmental and family information on approximately 79,000 children since 1972 (Office of the Provincial Advisor, 2004, 2006). This information has been traditionally entered manually and recorded and stored in a variety of files and formats throughout the 73 locations across the province, including programs within the Aboriginal Infant Development Program (Dana Brynelsen, personal communication, July 10, 2008). A Central Registry Database has been in place only since 2002 through the Infant Development Program Office of the Provincial Advisor (Chan, 2007). This database includes family contact information, such as “date and place of birth,” timing and places of services, for example, “date of intake,” “reason for referral,” and assessments conducted, diagnoses 3 received, hospitalizations and other medical history among many other fields. The database has the information from the time of referral up through the final process of discharge (see Appendixes E and F). Nevertheless, studies of the Infant Development Program have not been conducted to-date. This study is the first attempt for the Infant Development Program to participate in research that involves the families they have served. This study represents a true example of academic and community partnership and collaboration. Similar to what has been reported in research elsewhere (Tedlock, 2000; Tumbull et al., 1998, among others) this process of collaboration has taken time to come to fruition in terms of developing trust between the researchers and between consultants and other members of the Infant Development Program. Preliminary discussions with both the Infant Development Program Provincial Advisor and with the program coordinator of one of the Infant Development Program programs have been held during the past two years. These discussions were the result of a joint initiative between the agency and university representatives to inquire about the interest and the need to conduct a study that would document the experiences of families in the Infant Development Program. Moreover, an informal discussion was also held with some Infant Development Program consultants who invited a few former “Infant Development Program parents.” These parents had expressed their desire to be contacted for research purposes about their experiences with the Infant Development Program throughout the discharge process a few years earlier (B. Barnes, D. Brynelsen, personal communication, September 23, 2004; November 16, 2004, January 25, 2005). 4 Purpose of the Study This consultation process prepared the grounds to initiate a research process inspired by Shonkoff’s (2000) integrated perspectives in early intervention. These perspectives, in turn, derive from Bronfenbrenner’s ecological framework (1979, 1986, 2005) which includes the perspectives of children?s families, the perspectives of professionals working in community agencies/programs, and current neuro developmental research on child development and how is early intervention experienced. Thus, the study is intended to bring attention to the importance of effective and accessible programs that provide services to at-risk children from birth and into their early school years. The study has the following two overall goals: (1) to collect and integrate health-related and developmental information about children between birth and 3 years of age who have participated in the Infant Development Program and (2) to utilize the perspectives of children’s parents about their experiences with the Infant Development Program of BC. It was expected that the information gained from these two questions will provide a better understanding of: (a) the interaction of medical and biological risk factors (Goelman et al., 2006); (b) how children and their families have experienced these factors; and (c) how early intervention program and services utilization helped shape these unique experiences for both children and parents. Two observations derived from the research literatures on caregiving served as points of departure for this study. Based on their work with caregivers of adults with mental health illnesses, Karuza, Rabinowitz, and Zevon (1986) commented on the importance of the way in which the caregiving help was actually provided rather than 5 the type of care that was provided “... if positive consequences are to be realized. . .“ (p. 373). The second observation is from Mahoney, Boyce, Fewell, Spiker, and Wheeden (1998) who stress the fact that effective home-based, family-centred early intervention programs’ parents can effectively “complement” the intervention program instead of “supplementing it” (p. 9). With these observations in mind, this researcher examined the nature of the relationships between families (parents and children) and their Infant Development Program service providers, the different roles played by the consultants and how these interact in the nature and quality of service provision of this program, from the parents’ perspectives. The study addressed the research topic on parents’ perceptions of their experiences with early intervention on (a) early childhood development; (b) parenting; and/or (c) family dynamics in families with a child at-risk for developmental delays or diagnosed with developmental disabilities?” Four specific questions were raised in this study: (1) What are the individual experiences of parents of developmentally at-risk children who participated in the IDP of BC in terms of their child current developmental needs? (2) What are the individual experiences of parents of developmentally at-risk children who participated in the IDP of BC in terms of access to resources and programs? (3) In what ways do the experiences described in a) and b) relate to the current preschool/school demands on these parents? 6 (4) In what ways do the experiences described in (1) and (2) relate to the demands from other family members, and to financial/work pressures? Contributions of the Study This study contributes to the existing literature by expanding the target population beyond children with developmental disabilities, by including a retrospective component to the study, and by conducting the study within a qualitative research framework. The main strength of the study is drawn by complementing and expanding the current research in early intervention by focusing on families’ unique experiences while they participate in the Infant Development Program. This is a qualitative and retrospective study that contributes to the existing research on early intervention by attempting to gain a better understanding of the experiences of parents with developmentally at-risk children. Families of developmentally at-risk children requiring early intervention services, as a research topic, have not received the necessary attention thus far. For example, the relatively narrow range of topics addressed in previous and current research looks at the developmental outcomes and interventions for at-risk children. It has included growth (Ehrenkranz, Younes, Lemons, Fanaroff, Donovan, et al., 1999; Hack, Schluchter, Cartar, Rahman, Cuttler, et al., 2003), health and quality of life (Stjernqvist & Svenningsen, 1999; Tideman, Bjerre, & Forslund, 2001), and the overall patterns of skills performance in these children (Anderson, Doyle, & The Victorian Infant Collaborative Study Group, 2003; Breslau, Paneth & Lucia, 2005; Grunau, Whitfield, & Davis, 2002; Grunau, Whitfield, & Fay, 2004; Stroganova, Posikera, & Pisarevskii, 2005). Of these studies, 7 only a few include and acknowledge the ecological context of the child and the family (Klassen, Landgraf, Lee, Barer, Raina, et a!., 2003; Schiariti, Houbé, Lisonkova, Kiassen, & Lee, 2007; Taylor, Minich, & Hack, 2001). Another focal point of the early intervention literature has been the effectiveness of intervention programs and strategies for young children with diagnosed developmental disabilities. The focus of this research has been on current program and strategies (Boavida, Espe-Sherwindt, & Borges, 2000; Butler et al., 1999), as well as descriptive and critical meta-analyses of elements and strategies of past and current early intervention programs (Farran, 2000; Guralnick, 1997; McCollum, 2002, among others). In the research, the developmental outcomes of high-risk infants and young children (Allen, 2002; Aylward, 2002; Bhutta, Cleaves, Casey, Cradock, & Anand, 2002; To, Caderette, & Liu, 2001) have also been examined. This research has been made possible as the number of surviving high-risk infants has increased over the years, thanks to advanced and improved treatment provided by neonatal intensive care units (Synnes, 1994; Goelman, Synnes, Houbé, Kiassen, Lisonkova, et al., 2008); Vergara & Bigsby, 2004). Very few studies have examined the developmental outcomes of at-risk infants and children receiving early intervention services within the qualitative tradition (e.g., Tumbull, Friesen, & Ramirez, 1998). Further, even within the quantitative tradition, only a small proportion of studies have followed up children over a long term period, either longitudinally or retrospectivally, due to the limitation of sample selection and attrition within the data collection process inherent in studies examining the development of at-risk children (Ehrenkranz et a!., 1999; Hack et al., 2003; Tideman et al., 2001; Wolke & Meyer, 1999). A dearth of studies 8 exists in the research literature that focuses on specific family issues. This study intends to complement and expand upon the few examples of studies in this area such as Dunst, Trivette, and Cross (1986); Dunst, Trivette, and Jodry (1997); McWilliam and Bailey (1993); Poston, Turnbull, Park, Mannam et al., (2003), and more recently, Margalit and Al-Yagon (2007), and Santos and McCollum (2007). Chapter 2 of this study will provide a more in-depth review of these studies. This qualitative study complements the existing quantitative research-on “at risk” (for developmental delays) and “developmental disabilities” in the field of early intervention, emphasizing factors such as interpretation, empathy, narration, and context interpretation of the realities of these children and their families (Daly, 2007). As previously highlighted, this qualitative study goes beyond the measuring of at-risk children’s specific developmental skills and abilities. This is in marked contrast to the predominantly quantitative-based early intervention research cited in the literature review of the study, including Vohr and Msall (2004) and Wadsby, Sydsjo, and Göran, (2001). Hence, this multiple case study delves into the lives of specific families, as they grow and change and as they cope with different situations and confront their individual realities within their unique journey of parenting a child who is at risk for developmental delays or diagnosed with developmental disabilities. Meaning of the Study This study is of particular interest to me. As a former Infant Development Program Consultant, I worked with families of at-risk children almost 10 years ago and experienced part of their journey. During this time, I tried to meet some of their ongoing needs through consultation, support, and advocacy. I dealt with issues related 9 to their children’s development, for example, interpreting assessments; accessing resources and services such as financial aid; and transitioning to preschool or daycare programs as the time for discharge at age 3 approached. Later on, in my next professional role as a Resource Teacher, I served students who required additional assistance in their Primary grades in academic, behaviour, and work habit skills. Several of these students shared a common history of pre- pen- and/or post-natal risk, including prematurity, low birth-weight, and for a few of them, medical complications that had persisted throughout their preschool years. My job also included case management for students with global developmental delays and special academic needs that required the orchestration of different services through the school board system. My work experiences in both professional settings had something in common, beyond the fact that in both jobs I was working with children with developmental and/or learning needs. No continuity in case management was available for these children and families that would connect, or link, all of these programs and services. As an infant development consultant, my role as a service provider and coordinator for children and parents ended after the families’ discharge when they transitioned to preschool or daycare and received or not additional special preschool or therapeutic services support. In my next role as a resource teacher working with children who were 5 years old and older, I had little or no knowledge of either the children’s past health related experiences or the services they had received. Even for the children who had received their “special needs” designations while in preschool or daycare, the information that was available through their files mainly focused on their present and 10 immediate past level of services, and on their present developmental performance. Only parents could have provided additional information. Given the school setting and parents’ tight schedules only basic information was usually shared. I perceived that something was incomplete, and unfinished, at both ends of these children and parents’ paths. This sense of incompleteness was a barrier that prevented me, as a service provider, to fully grasp the needs of the children and of their parents, and the riches that they brought with them at this stage of their lives. I was thus inspired by these past professional experiences to take a first step in trying to “connect the dots” of these children’s paths, from the time of their birth and into their school ages. Listening to children’s parents’ voices about their experiences for the past three to seven years provided me with the opportunity to examine what the links were --as they reminisced about their children’s experiences after birth, during their IDP years, preschool, daycare and/or school, as well as their experiences in additional support programs. Definition of Terms Many of the definitions in this section are drawn from The early intervention dictionary: A multidisciplinary guide to terminology, edited by J.G. Coleman (2006). This book provides a comprehensive source of definitions for terms in the early intervention and early childhood special education fields. Assessment This study refers to Coleman’s (2006) definition of assessment as the combination of informal (or screening) and formal (using standardized tools) procedures that appraise the child’s developmental abilities. This study refers to 11 standardized and screening assessment tools. Examples of standardized tools mentioned in the present study include the Gessell Developmental Schedules (Gessell, 11g. & Ames, 1974), and the Battelle Inventory of Developmental Skills (Glascoe & Byrne, 1993). Examples of screening tools include the Ages and Stages Questionnaires (ASQ) (Bricker & Squires, 1999) and The Ounce (Meisels, Dombro, Marsden, & Weston, 2003). At-risk “At risk children” are those, who as a result of medical, biological, or environmental factors are more likely than typical [or non-risk] children to have developmental delays and school difficulties. Some of the medical complications include low and very low birth weight, premature birth, and other medical complications that most likely would have required specialized neonatal treatment (Goelman et al., 2006). Environmental factors include living in poverty, parental negligence, and/or being exposed to abuse, among others (Office of the Provincial Advisor, 2004, 2006). Development The study uses Coleman’s (2006) definition of development: “The lifelong process through which an individual acquires increasingly complex abilities” (p. 111). The proposal refers to typical development, that is, the behaviours and skills within the expected time frames (p. 417), and to atypical development, where unusual or abnormal behaviours are observed in the child (p. 37). Common examples of developmental milestone behaviours that signal typical developmental patterns include smiling, walking, and talking. Atypical development encompasses children with 12 “exceptionalities.” This term, in turn, includes children with “developmental delays” leading to physical and/or intellectual disabilities (Hanson, 2004), as well as children who have specific learning or language difficulties (Botting, 2004; Fuchs & Young, 2006). Although children who are identified as gifted learners are also deemed “exceptional” (Robinson, Zigler, & Gallagher, 2000), these children are not included within the description of “atypical” development in the study. Developmental delays The study uses the term “developmental delays” in reference to “infants and toddlers who are not achieving new skills in the typical time frame” (Coleman, 2006, p. 111). Some of these children with one or more moderately to severe delays in physical, motor, and/or cognitive, language, behaviour, and/or emotional development may be later identified with developmental disabilities (see below). Delays in most areas of development are referred to as ‘global developmental delays’ (p. 169). Revisions of the P1 94-192 (1991, 1997, & 2004) have added the “developmental delays” as “... a classification category for children ages three to nine years of age. . . that are generally associated with chronic health/medical conditions.” For example, epilepsy or heart congenital anomalies are usually identified between the first five years of life (Horowitz et al., 2007, p. 7). Disability A limitation in a functional activity or in a socially defined role or task is defined as a disability (Bradsher, 1996). Developmental disabilities Coleman (2006) refers to “developmental disabilities” as any physical or 13 mental condition before the age of 22 that impairs the cognitive, language or motor functioning of an individual, including autism, mental retardation, cerebral palsy or a neurological disorder. Developmental disabilities are generally linked to moderate to severe pre-, peri-, or post- natal medical, health, and or developmental conditions, and are described according to their intensity and severity. Given the level of compromised neuro-developmental functions due to these conditions, these disabilities are usually — but not always- identified within the first year of the child’s life; e.g. the more severe the condition, the higher the impact on the child’s development (intensity); therefore, the earlier will be the time for their identification (Hebbeler et al., 2007). Learning disability A learning disability is defined as a neurological disorder affecting the brain in one or more of the psychological processes involved in understanding or using information —e.g. language, spoken or written-- despite the individual exhibiting average or above average intelligence. Learning may be impacted because of specific difficulties with reading, writing, speaking, spelling, or doing mathematical calculations —and might involve dyslexia and or attention deficits (Horowitz et al., 2007; The Advocacy Institute, 2006). Recent research has uncovered that many children who are identified with learning disabilities were reported with mild to moderate delays in one or two areas of development between the ages of 0 and 3 by parents or caregivers (Glascoe, 1997; Horowitz et al., 2007). Disorder The study uses Coleman’s definition of disorder, that is, “an abnormality or disruption of a normal function, such as speech; e.g. speech disorder” (2006, p. 119). 14 Early intervention In this study, the term “early intervention” will refer to programs that provide secondary intervention services, in contrast to programs that offer preventative services (Goelman et al., 2005). IDP of BCs (at a secondary level of intervention) attempt to promote child health and well-being, enhance emerging child competencies, minimize developmental delays, remediate existing or emerging disabilities, prevent functional deterioration, promote adaptive parenting, and promote overall family functioning resilience and adaptation (Meisels & Shonkoff, 2000). IDP of BCs serve infants, toddlers, and their families between the ages of 0 to 3. In British Columbia and elsewhere in Canada, these programs are provided at no cost for the families. Early interventionists Coleman (2006) describes early interventionists as infant educators or trained professionals who assess and/or plan and implement a program that addresses the infant or young children’s developmental needs (p. 130). In this study, consultants and therapists serving children less than three years of age would be considered “early interventionists.” Early interventionists include professionals such as generalists in child development, as well as physiotherapists, occupational therapist, speech and language therapists, and vision and hearing specialists, among others. Families In this study, “family” refers to “kin” --living or not within the same household and not necessarily bound by marriage or biological ties (Rothausen, 1999). This definition acknowledges the diversity in the composition of families. Within this open conception of family, the study incorporates Turnbull et al. ‘s definition that describes 15 the family group as conformed by two or more people carrying out family responsibilities, and united or not by marriage or blood ties (1998, p. 5). Diversity in family composition refers to the recognition of traditional and non-traditional forms of family, including, a) the “nuclear” family (two parents and children); b) the “extended” family (uncles, aunts, and grandparents, among other family members); and c) “non traditional” family units, including gay and lesbian families. The Infant Development Program includes these forms of family composition within their referral and record tracking system (Infant Development Program Manual, 2004). The study intends to give preference to families where the parents (biological or adoptive) are also the primary caregivers of the child over foster families, where the child is under provisional care and under the official custody of the government. Grey Area Although the concept of “grey area” is not a widely used term in the research literature, it is used in the study to describe “young children who show early signs of struggling to learn in the absence of pronounced pediatric disorders; namely those children with early signs of learning disabilities” (Horowitz et al., 2007, p. 7). Inclusion/Inclusive Systems and Programs The term inclusion/inclusive systems and programs refers to the full enrollment and participation of children with special needs in preschool, school or community-based programs (Coleman, 2006, p. 202). Inclusive programs are accountable for providing specialized and individualized support for the unique needs of each one of the participating children. 16 Individualized Educational Plan or IEP An individualized educational program or IEP is designed for children with identified special needs. This program is revised every year with the parents and preschoollschool teaching/administrative staff (BC Ministry of Education, 2000a). Incidence Coleman refers to the term incidence as “the frequency or occurrence of a case (e.g., a disease or a disorder) in a given time” (2006, p. 203). Low, high incidence In the case of developmental disabilities, the higher the severity and intensity of the condition(s), the lower the incidence of the disability; hence the use of the term “low incidence” to refer to developmental conditions and/or disorders that are severe to profound (severity) and that affect several areas of development (intensity). Low incidence conditions occur in less than 1% and no more than 3% of the population under age 22; for example, cerebral palsy, some pervasive developmental disorders, and neurological disorders (Bradsher, 1996; Coleman et a!., 2006; Hebbeler et al., 2007; Kierans, Kramer, McGill, Wilkins, Liston, et a!., 2000). Conversely, “high incidence” refers to conditions/disabilities that are more subtle, with lower level of intensity and mild to moderate in the developmental degree of impact. High incidence conditions are generally apparent only after age 5 and during the school years and are present in 5-10% of school-aged children (for example, learning disabilities, attention deficit (hyperactive) disorder, mild cognitive delays, and mild sensorial impairments, such as vision and hearing (Coleman et al., 2006; Hebbeler et al., 2007, Kierans et al. 2000; The Advocacy Institute, 2006). 17 Low, Very Low and Extremely Low Birthweight In the current neonatology and the early intervention literature cited in this study, “Low birthweight” refers to infants born under 2500g; “Very Low Birthweight” refers to infants born under 1500g; and “Extremely Low Birthweight” refers to infants born under 800g (e.g. Goelman et al., 2006, 2008). Prematurity Prematurity refers to infants born under 37 weeks of gestation. (It is important to note that infants born at term - 37 to 41 weeks of gestation - but who weigh under 2500g are considered to be “small for gestational age” (SGA) and generally require medical intervention (Vergara & Bigsby, 2004, among others). Corrected age for prematurity. For the purposes of screening and assessments, IDP Consultants calculate the corrected age for premature infants and young children (birth to age three) by subtracting the actual date of birth from the expected due date of birth (YYYYJMM) (IDP Manual, 2004). Remedial Services This is a broad terms used within the educational context to encompass a range of instructional services used to meet the needs of school-aged children with learning disabilities, following —or not—early intervention services (Fuchs & Young, 2006). Remedial services encompass specialized support provided not only in the basic academic areas of learning (reading, writing, and mathematics), but also in study skills/work study habits, and in cognitive functions such as memory, visual, and auditory processing, and others. 18 Screening This proposal uses Gilliam, Meisels, and Mayes’ (2005) description of developmental screening as a simple method that may identify young children who may be at risk for problems in their health, development, or other areas of functioning.” The authors caution that screening practices are not only simple in their training and administration, but also deceptive in that the process requires careful and sound attention to its content and administration procedures in order for it to be an effective tool (p. 73). Universal screening includes the whole population of children of a specific health or administrative region, with or without established or suspected at-risk conditions before, during or after birth. Targetted screening aims at children with established developmental risk conditions. Established risk conditions are those that have been confirmed to have an impact on the developmental outcomes of children; each administrative or health region specifically defines their criteria that allows children and families to receive targetted screening services within that region (Coleman et al., 2006; Committee on Children with Disabilities, 2006; Hebbeler et al., 2007). Special Needs The term special needs refers to the child who requires individualized educational support and/or specialized medical intervention to assist in the acquisition of basic developmental and/or academic skills (Coleman, 2006, p. 376). Syndrome: Syndrome is a group of traits, generally genetically linked, that, occurring 19 together, describe a particular disease or disorder —whether or not all the traits or signs are not exhibited (Coleman, 2006, P. 392). Examples of syndromes in this study include: “Down’s syndrome” and “Fetal Alcohol Syndrome” as conditions linked to developmental disabilities. Universal Surveillance Universal surveillance refers to the ongoing follow-up of infants and young children from birth to school entry through the use of developmental screening techniques. Bremberg and Lindstrom (1997), Frankenburg (2003), and Gilliam et al. (2005) have examined the practice of universal surveillance and have evaluated the effectiveness of specific assessment tools to identify specific developmental delays in infants and toddlers who otherwise would not receive the attention they require according to their developmental and learning needs. Research Approach The study was conceived as a multiple case study (Creswell, 1998; Stake, 2000) of six families, within the tradition of post-positivist ethnographic research (Lincoln & Guba, 2000; Miller, Hengst, & Wang, 2005). This tradition of research is one that anticipates the re-creation of the experiences of participant parents, from the very early years of their child and to the school years. Information and responses from participants were retrieved through multiple data collection sources (Lincoln & Guba, 2000) including file reviews, focus groups discussions, and individual interviews. Focus groups and interviews were transcribed using a combination of verbatim and summarized transcriptions (Quinn-Patton, 1987) that were coded into relevant categories and themes (Holsti, 1969; Krippendorf, 2004; Roberts, 1997). 20 In this study I employed predominantly thematic content analysis to interpret the coded responses from participant parents (Berg, 2001; Hoisti, 1969; Krippendorf, 2004; Roberts, 1997). In order to ensure the rigor of the study, a process of inter-coder reliability was followed. Participants were consulted through member-checks throughout the data collection, data-analyses, and interpretation of the findings to ensure the validity of the findings. The findings of the study were representative across the themes identified, examining both the commonalities across the different families’ descriptions, and the unique or individual themes that emerge within each one of the participating families. The unique nature and characteristics of this study as being the product of an academic and community partnership situates the study within a collaborative and participatory research approach. Within the context of this approach, the community program involved with the study had a consultative and advising role in the development of the study and the completion of the study (Daly, 2007; Tedlock, 2000; and, Turnbull et al., 1998). The next two chapters of this study consist of a review of the literature, and a more detailed description of the proposed method and procedures. Overview of the Study The purpose of this qualitative, multiple case study was to gain a deeper understanding of the impact of early intervention services on children at-risk for developmental delays or diagnosed with developmental disabilities. The study aimed at capturing parents/caregivers’ experiences with the Infant Development Program (IDP) of BC from the time of their children’s birth and until the years following their discharge from this program. This was accomplished through the use of multiple 21 methods of data collection, including: (1) focus groups and semi-structured interviews with the 10 parents and 1 grandmother comprising the parent sample and (2) file reviews of the 7 children in the 6 participant families. Chapter 2 presents a review of the literature concerning parents/caregivers’ experiences with the early intervention services received through the IDP of BC. Chapter 3 presents the interpretative framework of this study that is situated within the ethnographic tradition of inquiry. This is followed by a description of the participant children and parents, and the method and procedures for data collection and analyses. Chapter 4 presents and explains the findings of the study based on their corresponding data analyses. Chapter 5 expands on these results with regards to their implications for program practices, training and policy in early intervention services, and recommendations for future research. 22 Chapter II: Literature Review Introduction Developmentally at-risk infants and children constitute a diverse group, with unique needs that partiy depend on whether or not they have an established developmental condition during their early years. An established condition is one that compromises their health and one or more developmental domains. At the same time, the needs of developmentally at-risk children also depend on the nature of this condition (Coleman et al., 2006; Committee on Children with Disabilities, 2001). The higher the degrees of intensity and severity of the condition, the higher the probabilities these children have in obtaining early intervention. Hebbeler al.’s (2007) recent report on a national longitudinal study on early intervention has identified the risk factor categories utilized in the process of referral of children between birth and age three. According to this study, developmentally at-risk infants and toddlers are referred for early intervention services based on one or more of the following risk categories: health-related, substance abuse, sensory impairments, neuromotor disabilities, muscle-skeletal conditions, motor delays, physical delays, language delays, and/or social/environmental concerns (p. 2-9). In the case of preschool children, cognitive and/or adaptive delays, speech and language impairments, social, behavioural, and emotional concerns are added to the list of risk factors (Horowitz et al., 2007). While approximately 50% of children meet two of the criteria for developmental risks identified by Hebbeler et al. (2007), almost 25% meet the criteria for over six of the total of risk factors (pp. 2-8). This chapter will first provide an in-depth review of the literature highlighting 23 the overall outcomes of developmentally at-risk children. This review will be followed by a description of screening and assessment practices currently used for the early identification of these children’s needs. Next, the chapter will review the characteristics and effectiveness of the different models of early intervention programs that respond to and address the above listed risk factors for these children. The last section of the chapter reviews the literature on families with developmentally at-risk children receiving early intervention services. Research on Developmentally “At- Risk” Infants and Children Research focusing on the health, developmental outcomes, and overall well being of children “at risk” for developmental disabilities has been conducted in British Columbia (Chelsea, Lisonkova & Synnes, 2004; Grunau et al., 2002; Houbé, Lisonkova, Kiassen, Synnes, Lee, et a!., 2004; Kiassen et al., 2003; Schiariti et al., 2007; Whitfield, Grunau, & Holsti, 1997), elsewhere in Canada (Chan et aL, 2001; Chudley, Conry, Cook, Loock, Rosales, & Leblanc, 2005); Saigal, Hoult, Streiner, Soskopf, & Rosenbaum, 2001; Synnes et al., 1994), and in Europe (Saigal et al., 2003; Stroganova et al., 2005; Walther, den Ogden & Verloove-Vanhorick, 2000; Wolke & Meyer, 1999). Examples of “at-risk” factors include anomalies that are present at birth, complications of treatments required in the newborn period, as well as other environmental and/or concomitant risk factors (Goelman et al., 2006). Many of these children are survivors of neonatal intensive care (NICU) treatments (Allen, 2002; Chan et al., 2001; Chelsea, Lisonkova, & Synnes, 2004; Rescnick et al., 1998; Synnes et al., 1994; Synnes, Lefevre, & Cake, 2005; Synnes et al., 2006; Vergara & Bigsby, 2004). Children exposed to these health and medical complications may end up with 24 specific developmental and learning disabilities. Some of these disabilities may only be evident in the later preschool years, while other ones are generally “hidden” until the elementary school years (Butler et al., 1999; Horwood, Mogridge, & Darlow, 1998; Klebanov, Brooks-Gunn, & McCormick, 1994; Rescnick et al., 1998; Stroganova et al., 2004; Whitfield et al., 1997). Recent preliminary findings from a population-based study that compares the health trajectories of children born in BC between the years 1996 and 1997 indicate that 25% of live born children in BC hospitals received specialized neonatal attention in Neonatal Intensive Care Units (NICU’S) due to premature birth and low to very low birth weight. An additional 5% of these children required extra more intensive medical intervention. This percentage includes 2% of children either born very premature and with extremely low birth weight, or born “small for their gestational age” (SGA) (Goelman et al., 2007; Goelman et al., 2008). Major circulatory and/or respiratory complications may impact on the central nervous system. These may include intra ventricular hemorrhage and/or respiratory distress syndrome that are associated with very premature birth and to very to extremely low birth weight (Donovue, 2002; Escobar, Littenberg, & Petiti, 1991; Sankaran, 2002; Schiariti et al., 2007; Synnes et al., 2001; Vohr, 2003). Longitudinal studies have reported global developmental delays and specific developmental disabilities for a significant proportion of former “NICU” treated children, adolescents, and adults, who survived these and other major complications soon after birth (Chelsea et al., 2004; Vohr et al., 2003; Vohr & Msall, 2004; Vohr et al., 2000). The findings of longitudinal studies are supported by Hebbeler et a!.’ s (2007) recent report. Hebbeler and colleagues confirmed that 38% of 25 the children referred to early intervention services between birth and three years received neonatal intensive care treatment associated with premature birth and low birth weight. Follow-upfor developmentally at-risk infants and children in British Columbia. In British British Columbia, Neonatal Follow-Up Clinics provide multidisciplinary diagnostic services for preterm infants treated in NICU’ s. Only a small percentage of extremely “at-risk” children, including those with gestational age under 25 weeks and with birth weight <800g. or those infants considered “small for gestational age,” are systematically followed up by the Provincial Neonatal Follow-up Program (NFUP) after their discharge from the NICU’s (Chan et al, 2001; Goelman et al., 2006; Synnes, Lefevre, & Cake, 2006). These children are seen by a multidisciplinary team through comprehensive, multi-disciplinary medical and developmental assessments scheduled between the ages of 1 and 5 years old. This team includes professionals trained in developmental psychology, in the pediatric medical and health sciences, and in social work. These assessments comprise physical check-ups, neuro-pediatric evaluations, psychological tests, hearing and vision screening, and speech and language batteries, among other components (Synnes et al., 1994; Synnes, Lisonkova, Houbé, Kiassen, & Lee, 2004; Goelman & The CHILD Collaborative, in press). Based on the results of their ongoing assessments, the NFUP team provides guidelines to parents and other professionals regarding the developmental follow-up of these children (Goelman & The CHILD Collaborative, in press). A proportion of the children with very low to extremely low birthweight have 26 medical conditions that may continue or intensify throughout their first second and/or third year of life (Goelman et al., 2007; Schiariti et al., 2007). These children are more likely to be identified later on as children in need for early intervention support. Community intervention services provide on-going developmental support for infants and young children and their families in BC; however, almost all intervention services terminate upon school entry. In addition, education policy, budgets, and staffing prohibit on-going provision of remedial services to all but the most disabled school- age former preterm infants (Goelman et al., 2006). For those at-risk children born in British Columbia who are followed up throughout their school entry years, a referral process takes place to service them through either early intervention programs or to specific pediatric therapies like physiotherapy and occupational therapy, according to Fuchs and Hungerford’s report (2005). A description of developmental assessment practices in British Columbia will be presented later on in this chapter. Research on Developmental Screening! Surveillance and Assessment Researchers and practitioners in the early intervention field concur on the need for early identification of special needs and/or at-risk factors that have been known to impact on the development of young children (Goelman et al., 2007; Guralnick, 1999; Meisels & Shonkoff, 2000). Moreover, researchers and practitioners agree on the importance of incorporating different levels of assessment into this ongoing screening and surveillance process that reflects an ecological framework. These current developmental assessment models include the family context as well as other environmental and psychosocial context factors, as mentioned earlier in this chapter (Coleman et al., 2006; Hebbeler et al., 2007; Krauss, 2000; Sroufe, Egeland, Carlson, 27 and Collins, 2005). Nonetheless, the discussion continues around the effectiveness of developmental screening and surveillance, and in particular, to the examination of universal vs. targeted screening and surveillance practices —similar to the screening and surveillance practices described in the previous section with regards to British Columbia’s Neonatal Follow-up (NFUP) Program. Attention to targeted screening and surveillance practices came as a result of systematic early intervention research conducted in the 1980’s and 1990’s (Farran, 2000; Guralnick, 1999; Meisels & Provence, 1996). This research identified the major biological and environmental risk factors that impact upon the developmental outcomes of infants and young children; hence the use of term “established” for developmental risks, conditions, or disabilities (Spiker, Hebbeler, & Mallik, 2005). Established risk conditions include chromosomal abnormalities such as Down’s syndrome; congenital anomalies, such as spina bifida; substance abuse, such as FAS and/or premature birth associated with extremely low birth weight, among others (Connor & Stresissguth, 1996; Chudley et al., 2005; Hebbeler et al., 2007; Vohr & Msall, 2004). This research responded to changes in legislation in US’ PL 94-192 and Part C (Early Intervention Services for Infants and Toddlers) of the Individuals with Disabilities Educational Act (IDEA). These revised legislations addressed the issues of accuracy and fairness in the assessment and service provision for children with identified developmental risks and disabilities (McLean, 2004). Recommendations from these legislative revisions were also followed by some provinces in Canada, including BC (Brynelsen et al.,1993; Goelman et al., 2005). As a result of this research, assessment tools over the past three decades have 28 gradually been refined to identify the different and unique skills of children with diverse developmental and learning needs. Some of the changes in the components of the developmental assessment process include the incorporation of less traditional forms of assessment. For example, these include use of parent-reported measures such as surveys, questionnaires, and interviews (Glascoe, 1997, 2000; Kiassen et a!., 2003; Lynch & Hanson, 2004) as well as anecdotal recording and observations collected by early intervention service providers and preschool and daycare teachers. Therefore, these tools can better determine the actual performance of children with established health and developmental conditions ranging between moderate to profound in their intensity of severity and degree of impact with a higher of accuracy than previously could be determined with more traditional assessment tools (Bailey, 2004b; McLean & Crais, 2004). This higher accuracy of the revised developmental assessment tools was the result of incorporating non-biasing elements such as the assessment of non verbal language skills. Tools are also conceived from a perspective of cultural diversity, and reflect cultural differences that help to portray a fair and accurate portrait of the children’s skills and the needs of their families (McLean & Crais, 2004; Crais, Poston Roy, & Free, 2006). The development of such tools follow the work of John Ogbu and collaborators about cultural expectations related to performance in minority students in U.S. schools (Ogbu, 1981; 1987). These changes in the selection of assessment components and tools are currently impacting on the emerging models of assessment and intervention (Coleman et al., 2006; Hebbeler et al., 2007). The evolution of developmental assessment tools for the purposes of screening and assessment has brought increased benefits in the identification and follow-up to 29 children with established conditions of developmental risk. The current assessment tools can identify the areas in need for special support, given the intensity and severity of these children’s developmental conditions, with the likelihood of a health-related or neuro-developmental disorder and/or sensory impairments being associated with their developmental conditions (Frankenburg, 2002; Meisels & Provence, 1986). Following the completion of a systematic process of developmental screening and assessment for most of the children with established risk conditions, a “special needs” designation would entitle these children and their families to receive specialized services (Gilliam al., 2005; Hebbeler et al., 2007; Meisels & Shonkoff, 2000). This is not necessarily the case for other developmentally at-risk children whose subtle difficulties are not readily identified by current assessment tools (Frankenburg, 2002; Gilliam et al., 2005; Glascoe, 1997, 2000). Hence, current research has very recently shifted its focus from diagnosis, intensity and severity to issues of sensitivity, specificity, and reliability of the tools utilized by clinicians and practitioners. The purpose of this shift is to determine which tools can actually help clinicians and other service providers to identify developmental delays and disabilities for this group of children in the “grey area” of development during their first three years of life (Ford & Dahinten, 2005; Glascoe, 1997, 2000; Horowitz et al., 2007). Two initiatives support this shift in conceptual thinking about early intervention. One is the “Recognition and Response” system, described by Coleman et al. as “an early intervening system for young children at-risk for learning disabilities” (2006, p.1). The second initiative is the “Response to Intervention” (RTI) model which derives from the “Recognition and Response” system, and is an integral component of Part C 30 of the IDEA Act. The RTI model is based on work conducted by Deno (1985), and by Berman (1985) (as cited in Coleman et al., 2006, P. 10). Both the “Recognition and Response” system and the “Response to Intervention” model rely on a multi-level tier of services. These services operate within an ecological framework represented in a pyramid with the family at its base. The “Recognition and Response” system deals with the processes of screening and surveillance. The system promotes universal screening and surveillance processes so that all children and not just the ones with established risk, health, or developmental conditions can be followed up according to their unique needs (Hebbeler et a!., 2007). Early interventionists working with the “Recognition and Response” system acknowledge the transitory nature of some of the more subtle developmental conditions identified between birth and age three years. The structure of this system includes pathways to access ongoing treatment and intervention for those conditions with different degrees of severity and levels of impact that will last during the child’s lifetime (Coleman et al., 2006). As such, the system integrates a variety of formal and informal tools and utilizes different forms of assessment that include the perspectives of families and the reports of service providers documenting changes in the children’s overall developmental outcomes over time —and the issues and needs expressed by families serviced (Coleman et al., 2006, pp. 23-24). The role of the Response to Intervention (RTI) model (see Appendix K) would be to implement the recommendations derived from the findings identified throughout the Recognition and Response early intervention system. The system places a central role families; however, multi- or interdisciplinary teams coordinating intervention services are 31 usually case managed by a professional (for example, a pediatrician) and continues to be centre or agency-based. Nevertheless, current reports on early intervention service provisions continue to identify home visits as the predominant model of early intervention services for families with children from birth to age years (Committee on Children with Disabilities, 2005; Hebbeler et al., 2007). While both of the “Recognition and Response” and “Response to Intervention” initiatives are currently being implemented in the US; other countries and regions are examining similar systems and models to address the urgent need of early identification of children at- risk for more specific developmental delays or learning disabilities (BC Ministry of Child and Family Development, 2007a; Committee on Special Needs Children, 2007; Pretis, 2007). Hebbeler et al. ‘5 (2007) previously cited recent report of the “National Longitudinal Study of Early Intervention” has, in fact, documented parents’ ratings of early intervention services. Out of the participating 3,338 families, 99% of the interviewed parents had a highly positive attitude about their first encounters with early intervention service providers in either home or centre settings. In addition, most parents feel listened to by early intervention service providers (pp. 2-5). The status of special needs services in British Columbia: Assessment practices. In the current health and educational systems in British Columbia, Canada, it is the labeling of specific diagnostic medical and/or developmental conditions that allows for children to qualify for funding so that they can apply for and eventually receive individualized support services during their preschool and school years (BC Ministry of Education, 2000b). In British Columbia, children with moderate to severe health or medical conditions, who may also exhibit developmental delays of moderate, severe, 32 or profound degree of intensity, are the same children who may be eligible for diagnostic assessment, systematic follow-up, and referrals to intervention and therapy- based programs from the time of their diagnosis, through their toddler and preschool years and onto their school years (Goelman et al., 2006). Funding for these children requires their being officially labelled with “special needs” under one or more established high or low incidence categories that meet specific clinical or professional criteria pre-established by the BC Ministries of Health and/or Education. Examples of these categories include chronic health conditions and pervasive developmental disorders, conduct disorders, or learning disabilities (BC Ministry of Education, 2000b). The age range for the identification of these conditions varies, as it has been documented by Hebbeler et al. (2007). While moderate to severe health and developmental conditions will probably receive attention between birth and age 3 years (Goelman et al., 2006; Office of the Provincial Advisor, 2006), mild to moderate health and/or developmental conditions would not receive support until a final diagnosis or an established developmental risk is confirmed. In BC, the Provincial Supported Child Development Program will provide developmental support services for children between the ages of 3 and 12 years, within these guidelines of identification and diagnosis (BC Ministry of Child and Family Development, 2007a). The BC model of early intervention and remedial services provision is guided by specific criteria that stem from two models. One is the medical model of services where a medical specialist must provide a health or developmentally-linked diagnosis of an established condition (Committee on Children with Disabilities, 2005). The diagnosed or established conditions are expected to meet the Province’s criteria for 33 funding. The second one refers to the use of the discrepancy criteria between skills and performance to determine differential diagnoses regarding cognitive abilities; for example, cognitive delays and general and specific learning disabilities (Coleman et al., 2006; The Advocacy Institute, 2006). Therefore, in order to receive early intervention services in BC, children must be assessed with specific tools that will demonstrate their performance being at least two standard deviations below the norm; show a significant difference between verbal and performance scales that indicate a discrepancy between the student’s intellectual aptitude and their actual academic skills; and/or reveal sensorial and/or physical and/or motor impairments that compromise their independent functioning at home and/or at school. Special needs funding entitles young children and their families to access pediatric therapies like physiotherapy- and occupational therapy; speech and language therapy; and behavioural intervention therapies (BC Ministry of Children and Family Development, 2007a). During the preschool years, these children may apply for placement at “inclusive” preschool and/or daycares, and have their individual needs met through the required adaptations and accommodations to the learning and physical environment specified in an individualized program (BC Ministry of Child and Family Development, 2007a). As they enter school, “remedial” services that target the specific developmental and learning needs of these children are intended to continue within the context of inclusive classrooms and schools. The expectation for children is that they will be assigned with support staff who can effectively work under the guidance of a specialized teacher, and in conjunction with parents, the classroom teacher, and school administrators, following the prescribed outcomes indicated in the 34 child’s “Individualized Educational Program (IEP)” (BC Ministry of Education, 2000a; Learning Assistance Teaching Association of BC, 2002). The next section describes the characteristics of early intervention practices that are intended to address the diverse needs of developmentally at-risk infants and young children and their families, and presents current research reports on the effectiveness of such practices. The Needfor Early Intervention for Developmentally At-risk Children: Current Research and Practices Findings of numerous studies in early intervention in BC and elsewhere in Canada, the US, and the Netherlands have confirmed the need for early intervention programs that target infants and children either identified with disabilities or at-risk for developmental delays, and their families (Bhutta et al., 2002; Butler et al., 1999; Guralnick 1997, 1998; Meisels & Shonkoff, 2000; Zero to Three and Ounce of Prevention Fund, 2000; Waither et al., 2000; Whitfield et al., 1997; Wolke & Meyer, 1999, among others). To date, developmentally at-risk infants and toddlers referred to early intervention services represent over 2 % of the North American (Canada and the US) population under age 3 (Cossette, 2002; Hebbeler et al., 2007). A wide range of developmental differences exist among these children. Criteria of “severity” and “intensity” are generally used to describe suspected delays, or identified disabilities, already exemplified in the “Definition of Terms” section. Children born with severe to profound conditions that impact on their health and overall areas of development will generally end up with a medical and/or a developmentally-linked diagnosis within their first year of life (Allen & Alexander, 1999; Bailey, Skinner & Warren, 2005) with some of the diagnoses even being detected prenatally (Wald, George, Smith, 35 Densem, Petterson et al., 1996). As previously mentioned, Hebbeler (2007) and collaborators (have used biological, environmental, and psychosocial risk factors as criteria to determine the level of early intervention services that the infant and/or young child might need, and these can be used to anticipate some of the paths that the children and their families could follow. For example, a child with an established health condition or with a diagnosed disability will most likely be involved with multiple levels of intervention since birth, through a multi- or interdisciplinary team providing ongoing assessments. These processes of assessment, diagnosis and access to specialized services are similar for children with moderate to severe delays in one or more areas of development. Given the high level of severity and degree of intensity of their conditions, it is very likely that these children will be identified with special needs by the age of three if consistently followed-up with developmental assessment tools (Allen & Alexander, 1999; Bailey et a!., 2005; Baird et al., 2001; Bremberg & Lindstrom, 1997; Gilliam et al., 2005; McLean, 2004). Recently reported findings from Hebbeler et al.’s (2007) national longitudinal study on early intervention services have confirmed these reports. While the prevalence of severe to profound developmental disabilities corresponds to approximately 3% of the 0-3 child population (in comparison with up to 11% children with unspecified developmental delays), the specific group of children with severe to profound disabilities accesses early intervention services at approximately seven months of age. Children with developmental delays are only identified by 16 months of age (pp. 2-9). These statistics reporting the time of referral for early intervention services closely 36 correspond to those of the Infant Development Program of BC (Office of the Provincial Advisor, 2006). The first group of at risk children for severe to profound disabilities represent up to 35% of the referrals between 6 — 12 months of age; the second group of children with moderate to severe developmental delays account, instead, for approximately 20% of the referrals, and they are mostly referred between 12-18 months of age (Office of the Provincial Advisor, 2006). In addition, within the classification of developmentally “at-risk” young children referred to early intervention programs, some of these infants and toddlers may exhibit difficulties that are also identified or at least “flagged” by the age of 3 years old (Bailey et al., 2005; Frankengurg, 2002; Gilliam et al., 2005; Glascoe, 1997). However, young children can be found whose developmental and/or learning differences might be subtle enough that they are not identified by early screening and assessment tools, until they are older and well into their school years (Frankengurg, 2002; Gilliam et al., 2005; Glascoe & Dworkin, 1993; Horowitz et al, 2007; McLean, 2004). This broad “at-risk” category constitutes approximately 30% of the Infant Development Program of BC’ s referrals received each year (Office of the Provincial Advisor, 2005, 2006), and corresponds with Hebbeler et al.’s (2007) proportion of at risk infants and young children referred to early intervention services (p. 2-2). Current referrals conducted by community-based professionals such as family physicians to early intervention programs, including the Infant Development Program of BC, tend to target either those children with diagnosed developmental delays, or those who have been identified by hospitals following neonatal treatment for moderate to severe complications requiring medial follow-up, as previously described. Research 37 in early intervention programs indicates that most professionals working in early intervention are specifically trained in the development of young children with special needs (McLean, 2004; Zero to Three and Ounce of Prevention Fund, 2000). Few early intervention professionals, however, have been introduced in the use of screening tools with high sensitivity and specificity (Glascoe, 1997; Horowitz et al., 2007); such tools would allow early interventionists to identify more subtle developmental conditions (Ford & Dahinten, 2005). Tn terms of service delivery, these professionals are trained to play several roles according to the child’s developmental profile and needs. For example, they may monitor families with children considered to be in the broader category of “at risk for developmental delays” through periodic telephone calls, and/or using quick screening tools such as the Ages and Stages Questionnaire (Bricker & Squires, 1999; Squires, Potter, & Bricker, 1999) and the Nipissing District Developmental Screen (Nipissing District Developmental Screen Property Association, 2002). In the case of children with identified “developmental delays” or with diagnosed “developmental disabilities” and their families, these professionals will, instead, provide ongoing support in the form of regular home visitation sessions that may be periodically followed up with formal assessments (Bailey, 2004a; Zero to Three and Ounce of Prevention Fund, 2000). A specific example of these levels of services is provided later on in this section. Early Intervention Programs in BC Funding for early intervention services at a preventative or primary prevention level in British Columbia has been in place under the mandate of the 1999 Government of Canada’s National Children’s Agenda, an agreement conducted in 38 partnership with territorial and provincial governments (Government of Canada, 2001, 2002). Following the Agenda’s priorities on the needs of young children and families, a federal/provincial/territorial Early Childhood Development Agreement was announced with four key foci: promoting healthy pregnancy, birth, and infancy; improving parenting and family supports; strengthening early childhood development, learning, and care; and the strengthening of community supports. Funding was, thus, provided for programs if they would a) focus on early intervention and prevention; b) value diversity in terms of the children’s abilities, ethnicity, and language; c) provide community support to the families and children; and d) provide a cross-sectoral form of service delivery from different professions and disciplines (Goelman et al., 2005, p. 440). In British Columbia, secondary level intervention programs are, instead, represented in different agencies and programs, including the Infant Development Program of BC, the Supported Child Development Program of BC, and the Child Development Centres, as well as multi-disciplinary based agencies; for example, the Centre for Ability and the Alan Cashmore Centre. Of these agencies, only the Infant Development Program of BC provides Province-wide, home-based, and family- centred early intervention services from birth to age 3 (Brynelsen, et al., 1993). The Supported Child Development Program provides in-centre and in-home consultation with staff, teachers and parents of children with identified special needs (www.scdp.ca). The BC Centre for Ability provides assessment and either in-centre or in-home direct therapy services for children ages birth to 6 years old with identified special needs (www.centreforability.ca). In contrast to the IDP where self-referrals are 39 accepted, families need a referral from a professional working with the child and family; for example, infant consultant, teacher, physician, or social worker, among others, stating the special needs status (or in process) of the referred child in order to gain access for these programs. In British Columbia, the IDP Program is the only one of its kind to provide services since birth. The early intervention and special needs support programs listed above, including child development centres, or CDCs, provide therapeutic oriented services, and/or assist families in supporting children ages 3 and older (Fuchs & Hungerford, 2005). These programs are not included within the family-centred approach and home-based service delivery model categories. Overview of the Infant Development Program ofBC2 Early intervention support in British Columbia has proven successful in reaching and serving developmentally at risk children and their families for over the past 30 years (Goelman et al., 2005). Extensive documentation has occurred regarding individual programs’ activities (Brynelsen, 1990; Brynelsen et al., 1993; Goelman et al, 2005). The Infant Development Program of BC specifically targets the developmental needs of young children and their families (Goelman et al., 2005). This is one of the few programs in BC led by a Provincial Advisor, The Office of the Provincial Advisor provides guidelines and ongoing training for all programs across the Province, while, at the same time, supports the individuality of each program within their community and region. Since 2002, the Office of the Provincial Advisor of the Infant Development Program of BC works in conjunction with the Aboriginal Infant Development Program Provincial Advisor (Office of the Advisor, Aboriginal 2 Infant Development Program of BC: www.idpofbc.ca 40 Infant Development Program of B.C., 2004, 2006). As a secondary early intervention program, the Infant Development Program monitors the development of children birth to age 3 years who are at risk for developmental delays, or who have been identified developmental disabilities. The program provides assessment and follow—up services for these children and their families (Goelman et al., 2005). The Infant Development Program follows provincial guidelines for the operation of the regional infant development programs throughout the province. As mentioned in the first chapter of this study, the program is based on theoretical developmental principles that stress the importance of the early years, that can alleviate the impact of delay or disability through early intervention, and that the family unit is essential to the healthy development of the child (Brynelsen, 1990; Brynelsen et a!., 1993). The Provincial Advisors are accountable to the Provincial Steering Committee and to the BC Ministry of Children and Family Development (Goelman et al., 2005; Office of the Provincial Advisor, 2004, 2006). Since its inception in 1972, the program has assisted over 79 000 families in British Columbia (Office of the Provincial Advisor, 2006). The program has also provided extensive documentation regarding individual programs’ activities and resources (Infant Development Program, 2004), with detailed biennial programs’ statistics collected over the past 20 years (Office of the Provincial Advisor, Infant Development Program of BC, 1983, 1994, 2002, 2004, 2006). Programs and services have continued to expand in different provinces since the 1970’s and throughout the 1980’s (Marfo, 1991, 1995; Office of the Provincial Advisor, Infant Development Program of BC, 2006). The early intervention model of services implemented by the Infant Development Program of BC has been described by 41 Goelman et a!. (2005). A chart with the IDP model of services is presented in Appendix I. For the purposes of the study, it is important to highlight the two different levels of early intervention services that are provided by the Infant Development Program: the home visitation and the monitoring level of services. The decision regarding which level of services is required by each family is made in conjunction with the parents at the early stages of referral to the Infant Development Program through the completion of the “Family Needs Survey” (see Appendix A). This study seeks to target participants that have been served by the Infant Development Program of BC in either the home-visitation or the monitoring level of services. The home- visitation services targets those children who have been referred to the program because of one of the following reasons: (a) compromised developmental conditions or disabilities, (b) developmental delays observed, or (c) identified risks that may lead to developmental delays. The home visitation sessions are booked with the parents in an interval of three to five weeks and last approximately one hour. The Infant Development Program Consultants and the parent(s) meet to share information and experiences on a variety of issues related to the development and well-being of the child, as listed in the “Family Needs Survey” (see Appendix A). Depending on the child’s unique needs, a physiotherapy consultant and/or other professionals involved in the developmental follow-up of the child; for example, “Deaf and Hard of Hearing” consultants, may also be present and/or regularly involved with Infant Development Program home visitations. Home visitation summaries with recommendations and follow-up plans and activities are recorded and filed, with copies given to parents after 42 each visits. These filed summaries constitute one of the recorded documents that the study will access within the data collection process, through the file reviews. On the home-visitation level, the study seeks to recruit families with the following characteristics: families with children either identified with “global developmental delays” within their first year of life and subsequently referred to the Infant Development Program; and families with children exposed to moderate to severe risk factors at birth; these children usually end up identified with developmental disabilities, or “specific developmental delays” by age 3 years. The home-visitation level of intervention is different from the “monitoring” intervention level in both the frequency and the intensity of contacts and follow-ups between the family and the Infant Development Program consultant. The “monitoring” level of services consists of regular follow-up to families via “telephone visits” and/or through on-site consultations. These are recorded with memos labelled “Telephone Visit Records” (see Appendix G) that list and describe the current needs of the families. Occasional home visits are made, most often to complete an informal screening or to discuss assessment and/or transition plans. The “monitoring” level of services is provided for children and families also referred to the Infant Development Program under the “at-risk” category between birth and age 3. The difference with families with children with established or identified developmental delays, is that the “at-risk” children are not diagnosed with a medical and/or developmental condition by the time they leave the Infant Development Program at age 3. Many of these children are described as “catching up to norm” before age 3 and are discharged from the program early on (Office of the Provincial Advisor, 2004, 2006). As they grow older 43 (age 5 and over), a number of the children in this specific “at-risk” category may require further assessment to rule-out specific learning andlon behavioural needs that in turn require specialized intervention during their preschool years (Gilliam et al., 2005; Horowitz et el., 2007). Research supporting the Infant Development Program’s family-centred model. Current research has reported how the family-centred model of services empowers families with children developmentally at-risk in terms of encouraging parents to actively participate in the decision making process and planning activities for their children. At the same time, studies that have evaluated the effectiveness of early intervention programs report a strong commitment from early intervention services that operate under family focused models (Dunst, et al., 1986; Dunst, Jenkins, & Trivette, 1988; Karuza et al., 1988; Turnbull & Turnbull, 1985, 1993, 1995, 2001). Ramey, Krauss, and Simeonsson (1989), as well as Ramey and Ramey (1998), have, in fact, highlighted the mutual influence of families (parents, caregivers and siblings) on early intervention service providers and vice versa. The early intervention model of services embraced by the Infant Development Program of BC follows Dunst et al. ‘5 (1988) theoretical framework of family-centred model for early intervention services (Infant Development Program, 2004). Dunst et al. (1988) have stressed how the needs of the family and not the imposed direction of the consultant or therapist assigned to each family must guide the intervention program for each child. The framework has been conceived within an ecological model that acknowledges the many levels of influence within the child, family, and community (Bronfenbrenner, 1979, 1986, 2005). Implementing this framework within 44 a home-visitation model of services, in turn, supports the Infant Development Program program’s intention of promoting and enhancing healthy attachment patterns between parents or caregivers and their children and of supporting parents’ sense of self- efficacy. This theoretical framework that originally draws from both attachment (Bowiby, 1973) and self-efficacy theories (Bandura, 1973, as cited in Forman & Sigel, 1979), is discussed in depth in Olds (2004) and in Olds and collaborators’ longitudinal study about nurses’ home pre- and post —natal visitation program (Olds, Eckenrode, Henderson, Kitzman, Powers, et al., 2007). The study followed mothers of infants and young children considered to be at-risk for environmental reasons (poverty, single mothers, andlor with perceived little or no self-confidence in their psychological resources). The findings of the study confirmed significant, long-term positive effects of the home visitation process on the health and well-being of children who were sustained until adulthood. Specific benefits in terms of the children’s developmental outcomes were reported for those cases where mothers reported little or no self-confidence in their own psychological resources. These findings are supported by related studies (Kitzman, 2004; Olds et a!., 2007; Wadsby et al.,2001) and reported in other publications, including policy reports focusing on the effectiveness of home- based services in the early childhood years, and the continuity of early child development services for targeted or at-risk populations (Drummond, Weir, & Kysela, 2002; King & Meyer, 2006; Santos, 2005, among others). Child-focused services. In contrast to family-centred services, child-focused early intervention services continue to operate following a more traditional orientation towards services that originate in the medical model of care (Guralnick, 2005; Zelman, 45 1996). Although child-focused services may include a home-visitation component, their working model is oriented towards addressing the needs of the child as the identified “client” or patient physically attending a program where services, usually of therapeutic nature, are provided and guided under the leadership of professional expertise (Committee on Children with Disabilities, 2005). These therapeutic-guided practices are reflected in the more traditional early intervention practices where a multi- or inter-disciplinary team focuses on the child’s development and invites the family to participate in the implementation of a service intervention plan, usually to comply with mandated government or agency service provision guidelines. Such is the case of the Individualized Family Services Plan3 (McLean, Wolery, & Bailey, 2004a). This professional leadership may be also identified within educational, non- therapeutical programs providing early intervention services for young, preschool children, and that rely on early childhood educators’ leadership (OECD, 2004). Doherty, Friendly, and Beach (2005) have used the term “pre-primary curriculum” practices to describe preschool programs that operate through the structuring of detailed goals and outcomes that determine or influence planned or curriculum decisions about what and how children learn, and what they are expected to learn, under a school “readiness” model. Within the child-centre approach, the more traditional pre-primary curriculum model contrasts with the social-pedagogic model also implemented in early childhood educational settings. This model acknowledges the context of family and community as major influences in the child’s development, works with trained practitioners who are highly reflective on their practices and place less stress on the accomplishment of goals; and rely on ongoing observation that may See Appendix A for an example of an IDP Individual Family Services Plan. 46 include developmental screening if advisable (Bertrand, 2007, p. 4). In summary, current research continues to support the delivery of highly specialized and individualized early intervention services for developmentally at-risk children; at the same time, researchers investigating service delivery practices for children and families have found compelling evidence about the effectiveness of family-centred early intervention service models, over services that are primarily child-focused. The last section of this chapter takes a look at literature concerning families of at-risk children in order to add context to the previously cited family- centred early intervention research. Research on Families with Developmentally At-risk Children Current qualitative research exploring the lives of families has discussed the implications of ontological assumptions about human development on this work. These assumptions include the acknowledgement of ecological contexts and time as central elements in the understanding of individual families (Bronfenbrenner, 1979, 1986, 2005; Daly, 2007, among others). Pratt and Fiese (2004) as cited in Daly (2007) have described how the family is central to the ecological context, and it serves as an intermediary between individual and the wider cultural contexts. Families provide a place for children to learn, and try to maintain a delicate balance between the individual priorities of their members, and the collective family history (Miller et al., 2005). Within the family life cycle, each transition represents a central focus in the development of both the individual and the collective family. A retrospective approach is important in the study of families, as it allows the researcher to examine and understand family transitions; that is, how families change over time (Daly, 2007). 47 Individual members in families grow biologically, they also need to adapt to external contexts and events, such as historical events, cultural norms, and social structures. Thus, families change in both the socially defined events they enact, the roles they play, and the identities they represent over time (Giele & Elder, 1998, p. 22). Through their own testimonials, parents of developmentally at-risk children have given strength to this ecological perspective (Turnbull, 1985; Turnbull et al., 1998; Turnbull & Turnbull, 2001). In Growing up Together, Jane Schulz (Turnbull & Tumbull, 1985) candidly analyzes her roles, attitudes, needs, and concerns as a parent of a child with cognitive and developmental delays. Schulz effectively describes how family life and the needs of parents of children and adults with disabilities are generally the same as the needs of any other family. The difference lies in the fact that parents of children with special needs lack clear precedents, for each stage that their child and family embarks on, and have limited alternatives in comparison to the rest of the families (p. 5). Schulz takes a look at the ongoing changes and transitions that are typically expected in families, through the lens of the transitions with her other children, as they grow up towards full independence. Conversely, the process of supporting a child with a disability to become an independent adult is described by Schulz as an ongoing struggle that goes beyond-the expected challenges of parenting. Schulz characterizes this process as one rooted in a deep awareness of the child’s needs, demands, and self-examination of abilities and limitations; anguish throughout each major transition lived, and acceptance of shattered dreams, of limitations, of social exclusion —and confronting even ostracism from the surrounding community. Schulz’s vivid account and plea for a full participation of both parents and children 48 with disabilities in major decisions relating to children and adults with disabilities is also echoed by other parents (Turnbull et al., 1985, 1993, 2001). Their voices resonate in researchers’ work that has identified similar experiences and processes in parents of developmentally at-risk children (Crnic, Friedrich, & Greenberg, 1983; Krauss, 1992, 1994; and, McCubbin & Patterson, 1981, as cited in Krauss, 2000, p. 293). Krauss (2000) presents an example that illustrates family interactions from the perspectives of the roles of caregivers. Krauss introduces McCubbin and Patterson’s (2000) model of coping, through the authors’ work with aging families, and how do caregivers cope with stressors (p. 293). Mc Gubbin and Patterson utilize a four component model (the ABCX model). This model describes the characteristics of stressors, labelled (A). (B) represents the meaning the stressor has for each family; (C) stands for the resources available for the caregiver to cope with the identified stressor; and, (X) refers to the individual qualities of adaptations of the caregivers. A more specific perspective on stress and coping among families with developmentally at-risk children is presented by Santos and McCollum (2007). Their research is cited and further discussed by Margalit and Al-Yagon (2007). Santos and McCollum compared levels of stress between families with children who had specific (or established) disabilities such as Down’s syndrome, versus those families with children who had non-specific disabilities, for example, developmental delays. These authors found no significant difference between the reported levels of stress between either of the two groups of families. Differences in the perceived levels of stress and in coping strategies for families with developmentally at-risk children were identified, however, in families with different beliefs and attitudes towards their children’s disability 49 (Margalit & Al-Yagon, 2007). Families rating higher in levels of “hope” appeared to report lower levels of stress and accessed more coping resources than the rest of the families. Margalit and Al-Yagon’s work was framed within Snyder’s (2002) hope theory and referred to Antonovsky’s (1987) “salutogenic” model. Snyder’s hope theory refers to the capacity of individuals to self-motivate in pursuing certain pathways, in order to successfully reach their desired goals. Antonovsky’s salutogenic model focuses on explaining the origin of health, rather than explaining the causes of disease, and looks at the continuum and not at the dichotomy between health and disease (Margalit & Al-Yagon, 2007). Similarly to these authors, Pearlin, Mullan, Semple, and Skaff (1990, as cited in Krauss, 2000, p. 293) have developed a conceptual model that examines the roles of care providers within the context of caregiving. These authors identify a relationship between stressors and coping strategies in families with developmentally at-risk children. The authors specifically raise the issue of the need for researchers and practitioners to look at the caregiver’ s characteristics and how these influence the dynamics and consequences of caregiving (p. 293). Kelly, Booth-LaForce, and Spieker (2005) have also examined the issues of stress and coping strategies in families in looking at the importance for researchers to recognize the families’ own resources when implementing an early intervention program. Researchers including Bailey and Powell (2005); Crnic et al. (1983); Dunst et al., (1988); Ramey et a!., (1989); Sroufe et al. (2005); and Seltzer and Krauss (1994), among others, have used a different lens in their research concerned with families and early intervention as they examine the context of caregiving from the parents’ perspective. These authors 50 identify some of the factors that affect the adaptation of parents to the task of rearing a developmentally at-risk child. For example, Sroufe et al. (2005) examined the multiple influences of caregiving that impacted children with challenging temperamental traits and who were identified with attention and learning difficulties during their school years. Many of these children were considered to be at-risk due to environmental influences like poverty. Sroufe (2005) and collaborators particularly focused their work on what they have termed the “organizational perspective of development.” These authors examined the caregiver-infant dyad and the influences exerted by both members of the dyad in shaping their first relationships —together with the external influence of environmental and psychosocial factors (pp. 39-40). A second example refers to Bailey and Powell’s (2005) work on listening to the needs of families. These authors report how families have identified key informational issues that are relevant for them as the recipients of early intervention services. These issues include accessing specific information related to the developmental needs of their child; obtaining strategies to relate to other members of the family; and being able to communicate their needs and issues to other people about how their experiences of living with a child with unique developmental needs influence their lives. Other work conducted by McWilliams (2005) and Kelly et al. (2005) report similar findings from families with developmentally at-risk children. These examples illustrate issues other than developmental outcomes that need to be taken into account by early intervention programs in their ongoing evaluation and implementation of their services with families. 51 Significance ofLiterature Review to the Current Study This study contributes to the current literature in response to a shift in the focus of research. Moving away from the perspective of a child-centred ‘developmental outcomes’ model, research has turned towards a family-centred model, and more recently, on to an exploration of integrated systems models that influence policy decisions on inclusive and universal early intervention service provision (Halfon, Uyeda, & Inkelas, 2004; Shonkoff, 2000, 2004). The Response to Intervention (RTI) model (see Appendix K) is a very recent example, as it provides a framework for the creation of programs that target a wide range of at-risk children and that address their unique needs (Coleman et al., 2006; Hebbeler, 2007; The Advocacy Institute, 2006). Through the power of parents’ voices, this study contributes to the understanding of “what works” about programs currently available in British Columbia for developmentally at-risk children, echoing McCollum (2002, p.5). At the same time, and as previously mentioned, the effectiveness of early intervention was more recently examined by Hebbeler et al.’s (2007) report. This information is relevant and highly informative to similar programs elsewhere in Canada and North America. It’s practicality and efficacy consists in pointing at, describing, and analyzing issues around the different models of service delivery for families with children with established risks and children with suspected risk who end up as ‘unlabelled’ preschool children. Even more so, the study also suggests the need for an in-depth revision of the models guiding service delivery, at a time when parents and community voices are gaining strength (Committee on Children with Disabilities, 2001; Glascoe, 1997, 2000; Mahoney et al, 1998; Shonkoff, 2004). These voices are 52 taking advantage of successful academic and community partnerships and collaborations, such as the one represented in this study to integrate efforts in addressing the developmental needs of young, at-risk children and their families from a universal and holistic perspective (Coleman et a!., 2006; Goelman, Brynelsen, & Pighini, 2007; Goelman & The CHILD Collaborative, in press). 53 Chapter III: Method Introduction Researchers in early intervention for developmentally at-risk children recognize the need to frame their investigation within an ecological framework that includes the family and community contexts of children —a framework that was absent in previous quantitatively based studies (Garbarino & Menzel, 2000; Guralnick, 2005; Scarborough et al., 2004; Shonkoff, 2000). As such, authors of recent studies in early intervention have incorporated some of the qualitative methods of inquiry used in the social sciences literature (Hirschberg, 1996; McWilliam & Bailey, 2000; Scarborough, 2004). At the same time, and using this same broader ecological framework supporting the study of early intervention, qualitative researchers are interested in understanding the changing realities of families and their ongoing transitions, as well as the different meanings of these realities (Daly, 2007; Denzin & Lincoln, 2000; Lincoln & Guba, 2000). This chapter will explain the research design and procedures of the study, with a previous description of the epistemological assumptions and the tradition of inquiry guiding its method. Paradigm of Science: Post-Positivism This ethnographic study was supported by the post-positivist paradigm that places emphasis on the discovery and verification of theories. Post-positivism relies on the use of multiple methods that assist the researcher in attempting to capture as many aspects of reality as possible (Denzin & Lincoln, 2000, p. 9). Unlike positivist assumptions that position the researcher as the “knower” of external reality, post- positivist epistemological assumptions believe that researchers can only represent an 54 approximation of reality. While positivist researchers state hypotheses that need to be verified, post-positivist researchers replace the absolute certainty, or “verification.” Therefore, more than one perspective of reality might be experienced by participants (Denzin & Lincoln, 2000). These assumptions converge with the intention of this study to describe the experiences of parents of developmentally at-risk children. Researchers conducting inquiries that follow post-positivistic assumptions recognize that conflicts might exist between the participants’ representation of their realities and the researcher’s point of view. This conflict needs to be acknowledged because it means that data and theories would be intertwined, and that pre-existing theories may provide specific meaning(s) to the data collected. In sum, no such thing as theory-free (or value free) data exists, as post-positivism is rooted in the objectivist practices of induction (Daly, 2007, p. 48). This is still an aspect of controversy among researchers following the post-positivistic paradigm, as it adds to the ongoing debate between the conventional (foundational) positivistJpositivist and the less traditional (non- foundational) constructivist/post-modernist paradigms (Lincoln & Guba, 2000). In addition and as already documented by Strauss and Corbin (1998, as cited in Daly, 2007, p. 48), the debate over the post-positivism paradigm representing more of a quantitative method of analysis has been present for several decades. In contrast to positivism, post-positivism has been conceptualized as a “less rigorous” form of scientific positivistic practice that includes reports of participant observation (Denzin & Lincoln, 2000, p. 9). Nevertheless, the post-positivistic paradigm continues to rely heavily on issues of internal and external validity as it seeks to approach the “external” truth. 55 In the post-positivist paradigm, scientific rigor is supported by the use of triangulation procedures, a procedure described later on in this chapter. Hence, relying on a multiplicity of data is important because this data is expected to confirm the information collected through various sources. Even if the multiple sources of information include (and rely on) the participants’ voices, the post-positivist researcher remains in “control” of the information. Member-checks with participants verified the accuracy of the information collected and interpreted. This verification ensured the rigor of the study. In turn, maintaining this scientific rigor ensured the building of the “edifice of knowledge” about the researched issues. In the final sections of this chapter, I will discuss more in depth other issues of rigor, including verification. As an epistemological posture, post-positivism is radically different from those postures in less traditional forms of inquiry mentioned earlier in this section, like constructivism. The non-traditional forms are based on epistemological assumptions that state that there is no universal or approximate external reality, and that knowledge and knower cannot be dissociated in an internal/external dualism (Lincoln & Guba, 2000). The non-traditional stances invite participants’ voices in order to find consensus, and to escape the marginalization that they have been subjected to in the past. Researchers unite their voices with the participants’ voices and take an active advocacy role. In contrast, the post-positivist researcher does not become an active advocate for social or political causes, but becomes, in Heron and Reason’s (1997) terms a “transformative intellectual” (p. 16) or as a translator of knowledge. The post- positivist researcher reports findings and delineates recommendations for change (to 56 other academics, to community agencies, to policy makers) based on the verification of what Heron and Reason (1997) have termed “non-falsified” hypotheses (p. 16). In trying to find some convergence between the different epistemological stances, authors Lincoln and Guba (2000) cite previous discussions from Guba and Lincoln (1981, 1982, 1989, and 1994) as well as Lincoln and Guba (1985). These discussions debate how it is possible for the epistemological assumptions underlying this post- positivist paradigm to find commensurability between positivist/post-positivist paradigms that would allow mixed strategies to be implemented. However, these authors acknowledge that commensurability is just a “chimera” between the foundational and non-foundational paradigms (Lincoln & Guba, 2000, p. 185). Within the context of the proposed multiple case study, however, the possibility exists for using mixed strategies of inquiry mentioned earlier in this chapter. A final topic on the debate on the post-positivist paradigm among non- foundational stances refers to the attempts made to allow for the use of combining quantitative data and descriptive statistics in reporting the findings, within the tradition of qualitative inquiry (Silverman, 2006). The rationale behind this conciliatory position is one that stresses the use and interpretation of the data, instead of focusing on the (quantitative) nature of the data (Lincoln & Guba, 2000; Rosenberg, Schnurr & Oxman, 1990). This study relied on the interpretation of the data and focused on qualitative content analyses methods of data analyses. Nonetheless, counting the frequencies of categories during the preliminary analyses of Stage One participants’ coded responses added to the rigor of this study, by providing this researcher with accurate information in reference to how often and under which particular topics 57 specific categories were identified. Multiple Case Study Approach The multiple case study approach allowed for an in-depth analysis of the participant parents’ perspectives of their varied experiences (Creswell, 1998, 2003). For example, given their previous involvement with the IDP of BC, its participant parents were expected to have experienced one or more of the processes of referral, identification, and diagnosis with their children between birth and age 3, at the time of their discharge from the program. A similar process would have happened later on, when transitioning to preschool, daycare, or school. A consistent process of member- checks followed throughout the study to ensure that, together with the researcher’s voice, the participants’ voices were accurately represented (Lincoln & Guba, 1985, 2000). The chapter includes an in-depth description of this process further along. Stake identifies three purposes for case studies: intrinsic, instrumental and collective (2000). Two of these purposes, instrumental, and collective, guided this multiple case study. The instrumental process refers to the ways in which this research provided specific insights into issues related to the early intervention service delivery models examined throughout the parents’ former participation with the Provincial Infant Development Program of BC. The underlying collective purpose relates to how the study investigated issues anticipated to be common for parents of developmentally at-risk children, as a “population.” Participant parents in the study were included in the “collective” category of “parents of developmentally at-risk children.” The sharing of similar needs, issues, worries, concerns, and activities gave a unique voice to his distinct group of participant parents. This distinct voice resonated in the different 58 “communities” where they belong; for example, the community of parents, the community of parents of developmentally at-risk children, and the community at large. The present study is situated within the ethnographic tradition of inquiry, described in the section that follows. Ethnography As a tradition of enquiry, ethnography seeks to provide a meaningful context to experiences such as “events,” “encounters” and “understandings” (Tedlock, 2000, p. 163). At the same time, the researcher, in conjunction with the participants, try to understand and interpret the meaning of the parents’ experiences (Tedlock, 2000). Hence, social issues surrounding the complex culture(s) of “developmentally at-risk” children would be identified, for example, barriers, accessibility, and inclusion, among others (Miller et a!., 2005). More specifically, the researcher would explore the overarching contexts and activities in which experiences and social issues are embedded for parents with developmentally at-risk children. This means paying attention to the parents’ informal belief systems (or “folk theories”) related to, for example, child development, child rearing, and accessing early intervention support services. In the ethnographic tradition, these beliefs are perceived as collectively shared, as it would be the case of this group of parents. Therefore, they inform and rationalize these experiences and activities (Miller et al., 2005, p. 222). Through the proposed multiple case study approach, this researcher looked at the experiences of participant parents from a historical background and was bound by a specific period. In his book Qualitative Methodsfor Family Studies and Human Development, Daly (2007) has identified how research with families must include the 59 contexts of time and place, as well as the timing of events, among other ontological assumptions. As such, the study included the physical setting where events occurred for the participating families. Other contexts were taken into consideration, for example the social and economic contexts, following Stake’s (2000) suggestions (p. 438). In order to acknowledge and represent these different contexts on the participant parents’ experiences, the data collection process included multiple sources (Donne-Wamboldt, 1992; Lincoln & Guba, 2000); for example, semi-structured interviews and focus groups, for the pilot stage of the data collection. These sources are listed and described in the Procedures section of the study. The use of these particular methods of data collection draws attention towards the rationale and purpose for choosing certain methods over others within the ethnographic tradition of inquiry. Authors including Schwandt (2000) and Gubrium and Holstein (2000) have elaborated in depth on the ways that methodologies and epistemological paradigms converge. More specifically, and within the constructivist and phenomenological stances, Gubrium & Holstein use the encompassing term of “ethnomethodologies.” By conducting a multiple case study through the use of interviews, as well as focus or discussion groups, the researcher provided parents with opportunities to share aspects of their changing realities in both one-to-one and group contexts (Daly, 2007). More specifically, semi-structured interviews allowed participants to include comments reflecting their values and beliefs while sharing their experiences. Byrne (2004, as cited in Silverman, 2006, p. 114) refers to the interaction between interviewee and respondent (or participant) as a process that takes into account the 60 other; for example, who the other is, what the other person is presumed to know (p.1 18). The level of depth reached through open-ended or semi-structured interviews is not reached through the use of other methods of data collection, for example structured interviews, surveys, or questionnaires. These methods, situated within the positivist model of interviews, are more concerned with reliable facts and depend on standardized questions. Conversely, semi-structured interviews and focus groups methods of data collection fall within the “emotionalist” or “constructionist” models of interviews (Silverman, 2006). These models of interviews strive to give a voice to participants whose experiences have not been fully represented in the past (Byrne, 2004, as cited in Silverman, 2006, p. 114). The present study, epistemologically defined in the post-positivist stance, and situated within the ethnographic tradition, was inspired by the guiding principles of the “emotionalist” models of interviewing. Rather than limiting participant respondents to express facts, this model allows respondents to generate information that gives authentic insight into their experiences (Silverman, 2006, p.1 18). Within the post-positivist stance researchers attempt to report a close approximation to reality. Therefore, although they do not co-construct reality with participants through these interactions (Denzin & Lincoln, 2000), researchers are not bound by strict, standardized methods of data collection. The guidance of the emotionalist model of interviews allowed this researcher to encourage participant parents to share their experiences, not only as a recollection of facts and events, but also as a representation or narrative, personal accounts about their experiences (Baker, 1982, as cited in Silverman, 2006, p.1 18). At the same time, this researcher made every effort to maintain the ethnographic principle of remaining as 61 “invisible” as possible throughout interviews, by limiting personal comments that could manipulate participant respondents’ comments and interventions (Silverman, 2006). Miller (2000, as cited in Daly, 2000, p. 67) acknowledges and incorporates the relationships between participants and their contexts within their families as being extremely important for the researcher to be familiarized with when conducting qualitative research. Inspired by the ethnographic tradition, Miller (2000) and other authors like Pratt and Fiese (2004, as cited in Daly, 2007, p. 67), and Giele and Elder (1998, as cited in Daly, 2007, p. 68), depict families as intermediaries between the individual and the broader cultural contexts —that is, between the individual and collective histories. Giele and Elder (1998) have also highlighted the changing nature of families and the ongoing transitions lived by family members. These authors describe how families not only move from one stage to the next, but also change in their roles and identities throughout the years. It is anticipated that semi-structured interviews and focus groups to be completed in the study will capture some of the complexity of the changing nature of families. This can be facilitated through the sharing of different aspects and components of the participants’ realities. At the same time, the combination of “text and talk” (Perakyla, 2005; Silverman, 2006) allowed for these different lenses to be brought into the data collection process. The combination of sources of information included textual sources such as file reviews (see Appendix I), as well as other “talk” sources such as member-checks with participants and additional member-checks with IDP of BC consultants. The use of multiple sources of data collection, or data triangulation, is further explored further along in this chapter. 62 Participation in interviews and focus group discussions elicited participant parents to share their experiences about the time spent with the lOP of BC, as well as their transitions to other programs after they left the program. The detailed process of sharing their experiences encouraged participant parents to unfold a series of events as they went back in time in their memories and accounts. As anticipated, participant parents recalled the early years of their children’s lives, and referred to family life events at each stage. This process ended up capturing two types of events: The first one, termed “epiphanies,” refers to unusual or unexpected events (Denzin, 2001). Schutz (1971), as cited in Daly, 2007, p. 66) refers to “epiphanies” as “problematic.” The second type of event has been described as “mundane reality,” and it refers to the more unremarkable events that constitute the daily life (Driver & Gottman, 2004, as cited in Daly, 2007, p. 66). These authors point out the importance of examining the social and emotional aspects of these ‘unremarkable’ events. The “mundane reality,” they state, provides a background in the understanding of other major components that are represented in the “epiphanies” (Driver & Gottman, 2004, as cited in Daly, 2007, p. 66). Examples of these two types of events are examined in the Results chapter of this study. Participatory nature ofstudy. Although the researcher’s position follows a post-positivist epistemological stance where the researcher remains “in control” of the information to be examined (Lincoln & Guba, 2000), the way the study was conducted represents a true example of academic and community partnership and collaboration. Similar to what has been reported in research elsewhere (Kernmis & McTaggart, 2000; Tedlock, 2000; Turnbull, Friesen, & Ramirez, 1997) this process of collaboration has 63 taken time to come to fruition. A key element in this collaboration has been the development of a high sense of trust between the researcher and participants, the consultants, and other members of the IDP of BC. Background for this collaborative relationship is provided in the literature review of this study (Goelman et al., 2005), and it is further illustrated in the Procedures section that follows. Research Design Overview and rationale. This is a qualitative and retrospective study. This researcher used a multiple case study approach involving six participant families served by the IDP of BC. According to Stake (2000), the case study is not conceived as a “methodological choice,” but a “choice of what is to be studied” (p. 435). This approach is defined by the interest in the case, and not by the methods of inquiry (p. 435); for example, in this proposed study, the experiences of the families of developmentally at-risk children represent the “case.” The study addressed the research topic on parents’ perceptions of their experiences with early intervention on (a) early childhood development; (b) parenting; and/or (c) family dynamics in families with a child at-risk for developmental delays or diagnosed with developmental disabilities. Four specific questions were raised: (1) What are the individual experiences of parents of developmentally at-risk children who participated in the Infant Development Program in terms of their child’s current developmental needs? (2) What are the individual experiences of parents of developmentally at-risk children who participated in the Infant Development Program in terms of access to resources and programs? 64 (3) In what ways do these individual experiences described in 1) and 2) relate to the current preschool/school demands on these parents? (4) In what ways do these individual experiences described in 1) and 2) relate to the demands from other family members and to financial/work pressures? Procedures Participants Description ofSample. This multiple case study purposefully targeted a sample of families (Berg, 2007) of parents and children who had participated in the TDP of BC program between the children’s birth and age three years. Previous discussions with this researcher’s supervisor and representatives from the IDP of BC (e.g. Provincial Advisor, Steering Committee Program Coordinator and consultats), cited earlier on in this study, guided this researcher in defining the criteria in the selection process of a purposive sample (Patton, 2002, as cited in Glesne, 2006, p. 35), to be described next. The selection and recruitment of participants, and the data collection procedures were completed in two stages. Stage One, or the pilot stage conducted between April 2005 and October 2006, followed by Stage Two, or the research project stage, between October 2007 and March 2008. The purpose of having two stages of data collection was to present a more comprehensive portrayal of the experiences of families receiving early intervention support in British Columbia. This would highlight the different characteristics of families served by the IDP of BC in terms of their children’s individual needs and of the services accessed through the program. The rationale behind this decision is associated with having two sets of criteria for 65 inclusion of the targetted sample, including (1) children with established risks and with diagnoses of developmental disabilities by the time of their discharge from the IDP at age 3 years old; and, (2) children with suspected risks and with no diagnoses of developmental disabilities by the time of IDP discharge. A detailed description of the sample, and the criteria for inclusion and exclusion is presented further along in this chapter. This study is of participatory nature, and, therefore, both adult and children are referred to as “participants,” as opposed to “subjects.” The justification for sample size and the description of participants are described next. Justification ofSample Size. The study met Creswell’s criteria (1998, 2003) in that the number of participant parents was small enough that it allowed for in-depth analysis. At the same time, the small size allowed the researchers to highlight each family’s unique characteristics. Although all six families shared common features that are displayed on Table 1, individual differences were noted in: (a) the composition and demographics of the six participating families; (b) the nature of their referral process into the IDP of BC; (c) the service provision levels received by families; and (d) the different stages lived by each family. Five of the families had already been discharged by the IDP of BC, and their children had moved towards daycare/preschool, and were in transition or were already participating in elementary school programs. In contrast, one of the families in Stage Once (Family 4) was still completing the discharge program of the IDP of BC at the time of data collection. In addition, the study followed the specified sampling criteria related to the requirements of content analysis, the data analysis method employed in this study. In content analysis, the theory of sampling is extended from populations of 66 individuals to sampling of texts. Text sampling must be large enough to address and respond to the research questions and minimize bias when coded, analyzed, and validated; at the same time, the text sample size must be manageable in size (Hoisti, 1969; Krippendorf, 2004). In this study, the samples of texts derive from the contents of the following documents: (1) Individual file reviews conducted by the researchers, followed up by an individual file revision session with the participant families; (2) eighteen- to 21 individual, semi-structured interviews; and, (3) two focus groups with participant parents (for families in Stage One only). The data analysis section reveals further details of this process, later on in this study. This number of itemized activities of data collection between the researcher and the participants is summarized in qualitative research as the number of “interactions.” When using a case study approach, an in-depth analysis of the participants’ experiences is required for the purpose of the study. In this study, it is the number of interactions with the participant parents, rather than the number of families (Silverman, 2006), that help meet the sampling requirements. A minimum of 26 and a maximum of 29 interactions took place between the researchers and the participants throughout the above described data collection activities in Stages One and Two, averaging to 27.5 interactions. This total number of interactions meets the minimum required number of interactions for data analysis in case studies of four to five interactions with each participant (M. Buchanan, personal communication, March 23, 2006; Silverman, 2006). This process is described in the Data Collection section of this chapter. Criteria for inclusion/exclusion. Criteria for inclusion were defined by the following: (a) the children’s date of birth between the years of 1997 and 2004, with 67 expected dates of discharge from the program between the years 2000-2007; and (b) the service level provided for children and families in the IDP of BC corresponding to home visits for children with diagnosed or suspected developmental delays and monitoring and telephone consultation for children in the “at risk” category. Both levels of service would have combined overall developmental and physiotherapy consultation and assessment services on an as-needed basis. These levels of service are described in the literature review of the study and further documented through file reviews and through the series of interviews. The final sample included children in two levels of service: (1) for children in the Stage One of data collection, regular bi monthly to monthly home visit level of services. Children in Stage One were referred to the IDP of BC under the developmental delays or health/developmental risk categories. These children ended up having a medical and/or developmental diagnosis or an educational label by the time of their discharge from the IDP of BC, and they were later on identified as requiring developmental and special education needs. (2) For children in Stage Two of data collection, monitoring consultations (varying between monthly, quarterly, and semi-yearly visits) held in the program’s “waitlist groups.” Children in Stage Two were referred to the IDP of BC under the ‘at-risk’ category and were discharged by age 3 without a specific diagnosis or special needs category. The rationale behind the criteria for selection of children in Stage Two responded to the necessity to include children referred to the IDP of BC in the ‘at-risk’ category and who could be considered in the ‘grey area,’ as described in the literature review of this study. According to Gilliam et al. (2005), the need exists for screening and surveillance for “at-risk” children with no identifiable delays or special needs by 68 age 3. Due to the risk factors at birth, these children could exhibit indicators of specific learning, behavioural, social-emotional, and motor difficulties between ages 3 — 5 years that would eventually have them require some kind of special assistance in the Elementary years. (3) The geographic location of the IDP of BC associated with the participating family was a specific large urban area within BC’s Lower Mainland Region. (4) The participant parents who met the above-described criteria were fluent in oral and written English in order to be in full capacity to decide to participate in this study. (Note: Since this is the first study of its kind in partnership with IDP, recruitment of non-English speaking families will be a target of a future study. The later study will allow the researcher to better capture and reflect the diversity of JDP families in BC’s Lower Mainland Region. Families who have participated in one of the DP Lower Mainland Region Programs, but who did not meet the above criteria for inclusion were not contacted for this study.) (5) The parents who agreed to participate in this study expressed their full consent for the following: (a) Allow researchers to contact them to partake in the different activities that comprised the data collection. Activities included two focus groups and three to five semi-structured interviews with the researchers for participant parents in Stage One, and three to five semi-structured interviews for participant parents in Stage Two. (b) Allow researchers to review their children’s files kept in the IDP of BC participating program’s office; and, (c) participate in member-check sessions to review the transcribed interviews; to revise the reviewed files; and, to provide final feedback on the coded interviews (see Appendix D). Criteria for exclusion included the following: (1) families who had not received services from the specific lOP program selected in this study; (2) families 69 who were not residing in British Columbia’s Lower Mainland at the time of the data collection; (3) families who did not speak and understand English; (4) families whose children were not born between 1999-2003; (5) families whose children were in foster care at the time of data collection; and (6) families who received IDP levels of services that did not include a home visitation or a monitoring/waitlist groups component (according to the criteria for inclusion for Stage One and Stage 2 families). Recruitment ofParticipants and Ethics. This multiple case study is the first of its kind with the IDP of BC of BC. Therefore, recruitment practices for Stages One and Two of the data collection process required working partnership and collaboration with the IDP of BC Provincial Advisor, the coordinator of the participating IDP of BC at the selected site location, and other members of the DP of BC Steering Committee. This Committee includes representatives of agencies that are directly involved with the IDP of BC. The recruitment of participants was preceded by a series of preliminary meetings with these representatives between January and July of 2004. These meetings provided the researchers with guidelines that were instrumental in designing both the final recruitment process and the overall logistics in the study. The recruitment process for Stage One was conducted throughout February and April, 2005. In order to preserve confidentiality of potential participant parents, recruitment was led and conducted by the Coordinator of the specific IDP program, at the selected site location. The following section describes the rigorous ethics process followed throughout the recruitment of participants. The ethics approval process comprised two separate sets of approvals during Stage One of data collection. The first one consisted of obtaining the consent and 70 approval from the agencies representing the IDP of BC Advisory Board, from the Office of the IDP of BC Provincial Advisor and from the selected IDP of BC. This consent allowed this researcher to conduct a study that would involve contacting up to 28 families who had participated in the lOP of BC between the years of 1997 (year of intake) and 2003 (year of discharge). These families had expressed their interest in being contacted for a follow-up study through the IDP of BC Post-Evaluation Questionnaire throughout the discharge process. Upon obtaining the expressed written consent from the above-mentioned agencies and programs for the researchers to contact the interested families by mail, the researcher proceeded with the second set of ethics approval through the Office of Research Studies at the University of British Columbia. Consent was obtained to contact by mail the families previously identified by the lOP of BC coordinator as families who had agreed to be re-contacted after being discharged from the lOP of BC. This permission for contact had been indicated in their lOP of BC Post-Service Evaluation Questionnaire (see Appendix A). The letter sent to these families invited them to participate in this study. The description of the study followed the criteria for inclusion previously outlined. During the second step of the consent process for Stage One of data collection, the IDP of BC Coordinator from the participating IDP of BC coordinated and supervised two mail- outs of consent packages within a period of 15 days between the first and the second mail-out. The consent packages sent to parents in each of the targeted families consisted of the following documents: (1) an introductory letter from the IDP of BC Provincial Advisor; (2) a letter from this researcher and her thesis supervisor explaining the nature and characteristics of the study; and, (3) consent forms for 71 parents that required participants to indicate either their consent or dissent in participating in the study. Parents were asked to sign whether they agreed or not to participate in the study and to mail back either response to the Researchers in self-addressed and stamped envelopes included in the package (see Appendix D). Signed consent forms were obtained from eight parents in four out of 28 families contacted by mail. Of the remaining 24 families, two declined participation (over the telephone, not in writing) to the Program Coordinator. These parents expressed their concerns with not being available to commit to the study because of family commitments. The remaining 22 families did not respond. There were no letters returned in the mail. Participant parents gave explicit consent for researchers to examine their child’s IDP of BC file and to be contacted by researchers to participate in two 90 minutes focus group sessions, and in three to five semi-structured interview sessions, each one expected to last, approximately, 30 to 45 minutes (see Appendix H). Ethics renewal and approval was obtained to conduct the Stage Two of the data collection. The criteria for inclusion in Stage Two were described in the previous section. The recruitment process followed similar steps as the ones outlined for Stage One. Selected families (e.g., those who had attended the program’s “waitlist monitoring” consultation sessions and did not receive home visits) were sent a package also containing a revised set of introductory letters and consent forms. It is important to know that in contrast to Stage One families, Stage Two families had not completed the Post Evaluation Questionnaire. The Program Coordinator selected the families who were contacted in Stage Two, following the previously outlined criteria. 72 Between November 2007 and January 2008, two mail outs were sent out to 16 families who had attended the waitlist or monitoring consultations in the IDP of BC between 1997 (intake) and 2006 (discharge). Of the 16 families contacted, two of them accepted to participate, three of them declined, and the remaining 11 did not respond. No letters were returned in the mail, as in Stage One of data collection (B. Barnes, personal communication, February 13, 2008). This was largely associated with the Program Coordinator ensuring that recruitment packages for potential participant parents meeting the criteria for inclusion would only be mailed to families with a confirmed current address and/or with date of discharge from the DP of BC between 2005 and 2006. The relevance of this information for data collection process refers to the program’s statistics reporting an average of 25% families moving within two to three years after discharge, at age 3 years old ( IDP of BC Statistics, 2004). These statistics not only focus on families with at-risk children, but also relate to BC family mobility trends reported through the 2001 Census (Statistics Canada). In fact, a document from the ECD Table in BC’s Fraser Region reports: “Early childhood is a time of family mobility. 41% of BC’s children will move 3 or more times before they get to school” (BC Children’s First, 2005, p. 3). The only two participating families in Stage 2 had been discharged in 2006, within two years of their date of discharge. Their acceptance to participate in this study confirmed what was anticipated by the program coordinator, regarding her consideration about contacting former families who had recently been discharged from the program. It is important to observe that for both Stages One and Two of data collection, the children in the participating families were not directly involved in any of the data 73 collection activities. All information regarding children was collected through file reviews or through interviews with their parents. The contents of file reviews, interviews, and focus groups will be further described in the data collection section of this study. A last re-contact was made to one of the families (Family 3) during Stage Two of the data collection in order to conduct a file review of the family’s older child (Child A). Throughout the interview process, the participant parent had incorporated data about both of her children. However, this child’s file had not been reviewed since Child A did not meet the criterion referring to having received a diagnosis by the discharge time at age 3. This child’s parents had referred him to the IDP of BC because of suspected developmental delays, yet the child had not received a diagnosis at the time of discharge. This addition was considered to be important for Stage Two of data collection for two reasons: One, the information about this child would provide the researcher with important information that would allow for data triangulation coming from interviews and focus groups. Two, this information would be regarded as an additional example of the children in the “grey area” category. These children do not generally receive the intervention services they require until their later school years, as previously documented in the literature review of this study (Coleman et al., 2006); Hebbeler et al., 2007; Meisels et a!., 2005). Description ofFinal Sample (Participant Children and Parents) The final sample consisted of six families, with a total of 11 participant parents and 7 participant children. The family composition included father-mother structures for families 1, 2, 3, 4, and 5, and had grandmother as the guardian and custodian for the participant child for Family 6. All participant parents were adults over 21 years 74 old; none of the participants was a senior (60 years old or over). In reference to marital status, all consent forms and files reviewed indicated that participant parents in families 1 — 5 were established couples, and residing together. Participant parents in families 1 through 5 identified themselves as married; Grandmother 6 was a single parent and provided sole consent to participate in the study. It is important to note that information retrieved through interview transcriptions about this family revealed that, although not living in the same household, both the guardianlcustodian and the child have regular contact with the child’s biological father (see Table 1). Parents in four out of the six participant families were recruited in Stage One of the data collection. These families had received services from the TDP of BC at the home visitation level. The remaining two families were recruited in Stage Two of the data collection and had, instead, participated in the “waitlist monitoring” groups. All families had complied with the rest of the requirements specified in the criteria for inclusion, and had signed consent forms for all the activities previously specified in the Recruitment section of this study. For purposes of confidentiality, the six participating families were identified with one digit number codes: 1, 2, 3, 4, 5, and 6. In order to ensure anonymity for all participating families, the participant’s descriptions (children and families) were stripped of personal information that could be linked to any of the participants. Nevertheless, given the small size of the sample as a case study, this researcher acknowledges that full anonymity cannot be guaranteed. Details on family composition and family demographics are summarized in Table 1. Information retrieved through file reviews, interviews, and file revision sessions with participant parents/guardian confirmed the participant parents in all six families lived together 75 Family Demographics Family Participant Members Children Age Gender Siblings (non participant) Age Gender Language Spoken English with their children. Table 1 presents information about parents’ education, work and financial status, and languages spoken. Although all 11 parents in the six families gave their consent for participation in this study, two fathers were limited in their availability to partake in each one of the data collection activities. Two participant couples decided that only the mothers would take part in the interviews, focus groups, and file revision sessions (see Table 2). Details on the parents’ involvement and participation in each one of these activities are provided in the procedures and data collection sections of this study. Table 1. Stage One Participant Parents Employment Status Level of Education Post- secondary / University F M Family F, M 1 Child 7y Girl lOy Boy FT PT lOm Family F, M English, Post- F M 2 Other - secondary bilingual None Child 6y Girl 9m Both FT Family F, M English, Post- F M 3 Other secondary / University Child A 4y Boy None Both PT, self- employed Child B 6y Boy6m 76 Table 1 (continued) Stage Family Two Members Participant Siblings (non- Participant Parents Children participant) Age Gender Age Gender Language Level of Employment Spoken Education Status English, Post- F M Family F, M Other secondary I University Child 2y Boy 7y Girl Both PT, and lOm PT self- employed English, Post- F M Family F, M Other - secondary I bilingual University None Child 5y Boy im N PT, self- employed English Post- GM* Family GM secondary I 6 University Child 4y Boy ly Boy PT 7m * Guardian Table 1 highlights the characteristics of the six families participating in the study. These were retrieved through both file revision and interview sessions. All participating parents/guardian have post-secondary education (college or university degree equivalents). At least one parent/guardian per family is either employed or self- employed, with none of the parents/guardian relying on permanent income assistance. (Note: Participant guardian 6 receives government subsidy for child, as reported in the file revision and interview 3 sessions). Of the 11 participant parents/guardian, five parents spoke a second language other than English, with parents in two of the families (2 and 5) describing themselves as ‘bilingual families.’ The other languages 77 spoken by participant parents included Cantonese, Tagalog, Hebrew, and German. In addition, through researcher’s observations and comments through interviews, the following information was gathered: (1) Five of the 11 parents who took part in the interviews and/or focus groups were immigrants to Canada; the other six parents were born in Canada, with two of them being first generation Canadian. (2) Ten of the 11 participant parents (in five out of six families) were homeowners. At the time of the data collection, four of the five families resided in either a two-level apartment or a town house (families 1, 3, 4, and 6); Family 5 resided in an apartment (condominium), and Family 6 resided in a two-storey townhouse within a co-operative housing complex. (3) Two of the families had support from extended family members, including child minding as well as help with cooking and driving members of the family. The remaining four families had either occasional or no support available from their extended families, as it will be described later on in the Results section of this study. Children included five boys and two girls. (Note: In the selection of participant children, this researcher was not focused on having equal numbers of male and female children for the purposes of this study). Information retrieved through the initial file reviews, later through the interviews, and file revision sessions with parents confirmed the dates of births of the children ranging between 1997 and 2003 for both Stages One and Two of data collection. Six out of the seven children resided with their two biological parents (father and mother), while one of them resided with his paternal grandmother (guardian and custodian). Three of the children had older siblings, while the remaining child was an only child. Children in participant families 2 and 5 had no 78 siblings. In Family 6, the child’s full-blooded sibling lives with his adoptive family, as reported during both the file revision session and during interview 3. As previously mentioned, the child in participant Family 6 is in permanent custody with his paternal grandmother, although he is in contact with his biological father. This participant child, his biological father and grandmother (guardian) are also in occasional contact with the child’s sibling and his adoptive family. At this point, there is no contact for either of the children with their biological mother who lives out of province. All children in Stage One of data collection were identified in the IDP of BC files as having special needs in terms of developmental disabilities and with specific health conditions associated that required medical treatment shortly after birth. One of the children’s mothers was followed during the last trimester of their pregnancy since there was a suspected congenital condition of her baby. This condition was identified during prenatal testing and later on confirmed with subsequent testing. Additional medical diagnoses and/or developmental conditions were also confirmed between birth and the age of three years according to the reviewed files (see Appendix I). From the remaining children in Stage One, two were identified with a genetic condition soon after birth (Families 2 and 4), and one was identified with developmental disabilities by age 1 year old (Family 3). His older sibling (Child A, in Family 3) was also referred later on to the IDP of BC because of specific developmental delays (his file was reviewed during Stage Two of data collection). Additional information was retrieved later on in during Stage One of the data collection process about the children in this study with dates of birth between the years of 1997 and 1998. This information, to be unfolded in the Results chapter of this study, revealed that these children 79 received additional diagnoses of other medical conditions between the ages of three and six years. At the time of Stage One of the data collection, the two children with dates of birth between the years 1997 (in Family 1) and 1998 (in Family 2) were attending elementary schools in their neighbourhoods. Child B, in Family 3, with year of birth 2000, attended an inclusive preschool with onsite special needs support. The child in Family 4, with year of birth 2003, was in the final phases of the discharge process with the IDP of BC. At this time, the IDP of BC was completing the transition process to an inclusive preschool with on-site special needs support and help of consultants working for a Provincial agency providing support for children with identified special needs during the preschool and elementary school years. It is important to note that, during Stage One of data collection, Family 3 had only child identified Child B for the purposes of file reviews. Child B was the younger of two siblings. However, information on Child A, Mother and Father 3’s older son, also in the IDP, emerged and was documented through focus groups discussions and interviews. Child A’s files were reviewed during Stage Two of the data collection. Detailed information about Child A in Family 3 unfolded as the data collection process progressed. Child A was age 2 by the time IDP of BC consultant was referred to the participating family to provide support to their younger child, identified as Child B in this study. This family had voiced their concerns on the development of their oldest child, or Child A to their family physician, but had not received the attention required regarding the needs of their child up to that point. Conversely, Child B, identified as “at risk” at birth, was soon after referred to the IDP of BC by a community health nurse. The family’s involvement with the IDP of BC for Child A 80 resulted in the parents being able to voice their developmental concerns on Child A. The IDP of BC Consultant supported and advocated on behalf of the parents in a referral process for Child A. This child ended up being identified with special needs and referred to the appropriate medical and developmental specialist services after his file was closed with the IDP of BC (by age four years old). This information was confirmed throughout the file revision session in Stage Two of the data collection. The information revealed how intertwined the experiences of Child A, Child B, and their parents were, as it will be described in the results and discussion sections of this study. Child A was identified with developmental delays for Stage One of data collection; although he received no diagnosis by the time of discharge, unlike the remaining children in Stage One, he was referred for special needs preschool services for developmental delays. Child A only received IDP services between ages 2 and 3 years old, unlike other children in Stages One and Two who received home visitation or monitoring services between birth and age 3 years old. Children in Stage Two of data collection were referred to the IDP of BC under the “at risk” category for developmental delays or disabilities given their pre-, pen-, and br post-natal history. None of the two children had had a specific diagnosis or medical/developmental condition identified throughout their participation with the JDP of BC according to both file reviews and interview transcriptions. The child in Family 5 had an uneventful pregnancy, but was born pre-term and identified with a condition that brought him to the special care nursery soon after birth, and was later on re-hospitalized with an acquired illness. Immediate follow-up occurred for the child in Family 6 right after birth, given his pre-natal history of his biological mother’s drug 81 use during the first two trimesters of the pregnancy (see Appendix 1). Six out of the seven children in Stages One and Two of the data collection were referred to the IDP of BC within six months of age. The wait time for children between the date of referral and date of intake by the 1DP of BC ranged between one and three months. Several referral sources were available for all children for Stages One and Two of data collection. For Stage One, children with identified health andJor developmental risks, the sources were (1) pediatrician (two children) and (2) community health nurse (two children). For Stage Two, children with suspected risks, the sources were (3) social worker (one child); (4) pediatric physiotherapist at Provincial Children’s Hospital (one child). Referral (5) was a self-referral from parents in Stage One after their youngest child; also, a participant in the study was referred to the IDP of BC through the community health nurse. Data collection. Stages One and Two Data sources. Data collection in both Stages One and Two used multiple primary and secondary sources of information (Donne-Wamboldt, 1992; Krippendorf, 2004; Rosenberg et al., 1990). Multiple sources of information included the following: (1) File reviews from the children’s IDP of BC files; (2) the transcribed versions of approximately 30 individual, semi-structured parent interviews; e.g., three to four interviews with each parent; (3) the transcribed versions of two focus groups with parent participants, one preceding and one following the parent interviews; and, (4) memos and/or theoretical notes (Strauss 1987). These included comments and reflections added by this researcher throughout the completion of any of the above listed activities. For both Stages One and Two the data collection process comprised 82 three phases. Phase 1. This phase included the collection of primary and secondary sources of information. Primary sources comprised file reviews, interviews, and focus groups. Secondary sources of data collection included written or digitally recorded memos that were attached to the primary sources of information. Clarification and updated information about the IDP of BC was obtained through periodic meetings held with LDP of BC consultants, with the Program Coordinator and with the Provincial Advisor. Finally, each one of the families completed revisions of the reviewed files with the researcher. The use of secondary sources was instrumental for two reasons. First, for the purposes of data verification within the data triangulation process, it was important to corroborate or to clarify ambiguous or unclear information drawn from the IDP of BC files. Second, in order to gain a deeper understanding of the findings, it was important to add or complement information, and make connections to be used further along in the study for interpretation (and, specifically, for the memos that followed some of the interview sessions). For both Stages One and Two of data collection, the first phase included file reviews from the children?s IDP of BC files, followed by three to four semi-structured digitally recorded interviews. Families in Stage One of the data collection (families 1, 2, 3, and 4) had also the first of the two focus groups occurring during the first phase, and the second and final focus group, after the set of interviews were completed. Activities for Stage One (families 1, 2, 3, and 4) were carried out between March and September 2005; whereas activities for Stage Two (families 5, 6 and file reviews for Child A in Family 3) were carried out between January and March 2008. Table 2 provides an overview of the attendance 83 and participation of parents per family throughout the data collection activities. Phase 2. The second phase focused on the transcription of the digitally recorded interviews and focus groups, between October 2005 and July 2006, for Stage One, and between March and April 2008, for Stage Two. Phase 3. The third and last phase focused on the final revision of the transcribed material with participant parents, and was completed, for Stage One, between September and October 2006, and during April 2008 for Stage Two. (Note: An ethics amendment requiring the extension of the project for data collection was submitted and approved after Phases 1 and 2 of the data collection process took longer than first anticipated and delayed Phase 3 of the data collection process.4A detailed description of the activities and the sources of information used during Phases 1 to 3 is presented next). ‘ This researcher went on two health-related leaves between winter 2005 and spring of 2006. 84 Table 2. Interview of Parent/Guardian Participation in the Focus Groups, Interview and File Families 1 2 3 4 5 6 Data Collection and Post Data Collection Activities’ Topics Focus Group 1 Meaning of study x x x x N/A N/A X M M X Focus Group 2 Closing comments F X X X N/A N/A X M M X Interview Session I Early experiences X X X F F N/A M M M M M GM Interview Session 2 Transitionfrom El [0 - x X X F F N/A 3 Program] M M M M M GM Interview Session 3 Transition to school X X F F N/A M M M M M GM Interview Session 4 Coping with transitions x x x and changes N/A N/A N/A M M M Post data collection Verification of X X X F F N/A activity 1 :File Revision summarizedfile information M M M M M GM Post data collection Transcriptions X X X X F N/A activity 2: Member Checks, Session 1 M M M M M GM Revision Sessions* Table 2 highlights overall parental attendance and participation throughout the data collection activities. It also reveals parental figures attending; for example, mother, father, and guardian). For example, Family 5 in Stage Two was the only one with both parents 85 participating throughout interviews through Stages One and Two of the data collection process. Family 4 in Stage One having both parents participate in two out of the three interviews. A closer look to parental figures’ attendance patterns reveals that in families 1, 2, and 3, only mothers participated in the interviews; whereas the grandmother (guardian) participated for Family 6. Focus groups discussions’ attendance in Stage One was low due to unforeseen circumstances. In reference to patterns of overall parent attendance, it is important to note that parents’ absences were due to unforeseen or unexpected circumstances for parents on both dates for Focus Group 1 and 2. It is also relevant to highlight that the dates had been previously scheduled according to the personal convenience of all participants. In addition, participants received telephone calls confirming their availability for the afready pre-scheduled meetings one- to two- days ahead of the focus groups dates. In reviewing the recruitment procedures for data collection, it is also relevant to emphasize that the parent participants had not only given their consent for researchers to examine their children’s files reviewed, but that they had also indicated their willingness to participate in interviews and focus groups. Issues related to parent participation throughout the interview process with all the participant parents are brought up in the Discussion chapter of this study. Phase 1 File Reviews Procedures. The file review process for the 7 children was conducted at the IDP of BC site by the co-Investigator in this study between March and July, 2005, for Stage One, and between January 2008 and March 2008, for Stage Two. The JDP of BC staff provided this investigator access to the files that were kept locked in the consultants’offices, as well as a working space and access to a computer to enter the anonymized information retrieved from each one of the reviewed files. All of this 86 information was stripped from individual identifiers. Pseudonyms and random ID- numbers were assigned to the 6 participant families (one ID-number per family), in order to ensure anonymity and to maintain confidentiality. The retrieval of information contained in the fields included in the IDP of BC’ s Central Registry Codes. These codes categorize and describe the fields used by IDP of BC consultants since the year 2002 to enter the information on each one of the children and families participating in the IDP of BC in the Referral Forms (see Appendix E). These codes have been recently entered to the IDP database system that is a part of a larger database project entitled The LINK-DSC Database System (Chan, 2007). The project was previously alluded to in chapter 2 of this proposal. Content. Each one of the IDP of BC files contained information categorized in fields (see Appendix F). File fields included the following: Demographic information about each child, family composition, dates of referral, intake, and discharge with the IDP of BC, medical, health, and developmental information collected between birth and three years; description of the child and family’s involvement with the IDP of BC; for example, therapies, assessments, other referrals, and access to alternative programs, as well as information on the discharge process and transition to other programs and services. This information had been manually recorded and/or copied and entered by IDP consultants in a series of documents contained in each one of the retrieved files. For Stage One of data collection, and for Child A (Family 3) reviewed during Stage Two of data collection, the IDP of BC files contained the following documents (see Appendices A — G): (a) the initial Needs Assessment Questionnaire, where the the family identifies their needs and goals for their child (or children) 87 together with the consultant; (b) the Home Visit Records, filled monthly or bi-monthly according to the number of home visits with anecdotal recordings by the IDP of BC consultant and/or pediatric physiotherapist supporting the family The anecdotal comments entered in the Home Visit records highlight some of the IDP of BC consultant’s recommendations and strategies shared for each family and their impressions on the home visits accomplishments; telephone communication registries, that contain updates and follow-ups to a previous visit, for example, information about referrals, assessment dates, and liaison with other programs, services and/or resources; (d) copies of medical and/or developmental assessment reports; (e) copies of referral forms to other services; and, (f) summaries or notes from attendance to other programs or groups, for example the parent-infant group or language stimulation/therapy sessions. All of this information was entered and summarized into individual excel template forms, which were later on revised with the participant parents. In addition to these documents, Stage Two of data collection included notes and reports on the monitoring consultations —with telephone visits preceding or following up. These notes and reports substitute the home visit records and consultations retrieved for participating families in Stage One of the data collection. Each one of the template forms of the reviewed files contained memos, or theoretical notes (Strauss, 1987), that summarized the researchers’ impressions on the interactions between each family and the IDP of BC consultant(s), after having completed the review of the individual files, as previously mentioned. These notes provided the researchers with secondary sources of information that, together with the primary sources of information, are later on integrated in the Results and Discussion chpaters 88 of this study. Additional details on information entered in the file review forms will be complemented in a section covering the file revision sessions carried out with the participant parents after the series of interviews were completed (see Appendix I). Phase I Focus Group 1 Procedures. The first focus group was conducted on October 2005 at the IDP of BC site. The aim was to promote for the attending parent participants with an opportunity to engage in an introductory discussion about their perspectives on the nature and purpose of the case study. Having obtained previous written consent from participants, the session was digitally recorded, and later on transcribed. The objectives of the discussion were the following: (a) to engage parents in a discussion about their perspectives on the nature and purpose of the proposed case study; (b) to identify what were the parents’ roles in the study; and, (c) to provide parents with an opportunity to raise any issues or doubts about their participation in the study. The researcher had previously contacted the participant parents by telephone and had secured attendance for at least one member of each of the parents in every one of the participant families for a specific weekday, in the evening. Parents were offered two child minding options. The first one was child minding at the site; the second one was reimbursement for child minding at home, as well as bus fares. There was free parking on site. None of the participant parents requested any of the child minding options, nor bus fare reimbursement. The final attendance, however, consisted of two parents from two of the participant families. One of the non-attending participants was suddenly ill that night, whereas the fourth participant had last minute work schedule conflicts. Focus Group 1 was conducted with two participant mothers representing families 2 89 and 3 (see Table 2). Contents. The guiding topic for this focus group was “meaning of study.” The session consisted of (a) a brief welcome and introductions; (b) a summarized presentation highlighting the background and rationale behind this study; and (c) the introduction of a guiding outline that listed the goals for the discussion that would be taking place. Following these preliminary activities, the researcher asked the question “In what ways is it meaningful for you to participate in this study?” to participant parents attending this session (see Appendix H). Participants sustained an engaged discussion for approximately 45 minutes. The discussion tried to elaborate on their hopes and expectations concerning their participation in the study, based on their recollection of their experiences with the IDP of BC when their children were under the age of three. The discussion ended with the researcher providing a summary of its main points. The session concluded with a check-in and confirmation with each parent participant on his or her understanding of the procedures for scheduling the interviews coming up in subsequent weeks. It is important to note that the questions posed during the Focus Group 1 with the two participating parents were later on woven into the introduction component of the first interview for the six parents who participated in the interviews, but who did not take part in Focus Group 1 (in both Stages One and Two of the data collection). The rationale supporting this decision was to ensure that each participant would have access to and would be able to reflect upon most topics covered through the data collection. Notwithstanding, the effort to maintain the integrity of the contents, this researcher acknowledges two important differences in these activities. One, the style of the question and answer process derived from 90 individual interviews would differ from that of the participant group discussion (Fontana & Frey, 2000). Two, in terms of number of participants, there are differences in the discussion format carried out by only two participant parents, in contrast to the discussion that would have taken place with at least four participant parents as originally projected in this study. These circumstances were limiting factors acknowledged in chapter 4 of this study. Phase 1 Interviews Procedures: The series of three to four semi-structured interviews focused on parents’ experiences while serviced by IDP of BC (see Appendix H). Each interview consisted of three to four questions using “how to” and “in what ways” formats. These formats allowed participant parents to expand on the topic, and at the same time provided some structure to the session (Fontana & Frey, 2000; Lincoln & Guba, 1985). Interviews were scheduled and carried out following each parents’ requests for dates, time, and location. Most interviews took place in the parents’ own homes. However, two of the participant families chose to hold the interviews in different locations; one, in a community centre near their home, another one in a café close to her work place. As previously stated, children did not take part in any of the interviews. Nonetheless, it is important to inform the presence of children (and in one of the cases, a child’s older sibling) with their parents in all interviews and file review session in families 2 and 4, at their parents’ request. One of the other families (Family 1) had their participating child and their sibling in a separate area of their home during the final interview session. Although being removed from the interview process, the two children in this family were cognizant of the interview session. Child minding was 91 available for parents so that they could make arrangements before the scheduling of the interviews; however, parents’ preferences were to take care of their own child minding arrangements; for example, sharing with their partners. One family (Family 6) accepted reimbursement for child minding for two out of the three interviews and for the last member check session, during Stage Two of data collection. Contents. Interview questions elaborated on the queries posed by the study’s research questions in trying to learn about the participant parents’ experiences. (1) Interview #1: In the first interview, the researcher first summed up the highlights of Focus Group 1 discussion session for participant parents in Stage One. The researcher then proceeded to ask parents information about their recollection on the following events: (a) their child’s birth and post-natal experiences; (b) the process of referral to IDP of BC; and, (c) the early experiences with the IDP of BC. As mentioned earlier, the first interviews included a similar introduction to Focus Group 1 for those two parents participating in Stage One interviews who could not attend it and for participant parents in Stage Two. (2) Interview #2: The second interview dealt with the parents and overall family experiences through the discharge process with IDP of BC. This interview expanded on the families’ transition to preschool and daycare programs. Experiences would have included their accessing other agencies providing support for families with children at risk for developmental delays during the preschool years. (3) Interview #3: The third interview dealt with the parents’ experiences of their children entering school, in either Kindergarten or grade 1, and the support services their children were currently receiving during their Elementary years. Only the three parents with children ages six to eight at the time of the Stage 92 One data collection participated in this third interview. However, parents in Stage Two commented on issues related to their children transitioning to Kindergarten. (4) Interview #4: The fourth and last interview for all families in Stages One and Two enquired how had parents dealt —and what were some of their coping strategies— throughout their different experiences and transition processes. Specifically, families where asked to provide examples that would illustrate these processes since their child’s birth, within the realities of parenting a child who was identified as “at risk” for developmental delays. Parents were asked to situate questions within the context of raising a child who had required or might still require of special attention. Parents were also asked to consider issues regarding their raising other children and dealing with job, financial, and other logistic and daily life issues (see Appendix H). Focus Group 2 The aims of the second and last focus group discussion were to engage parents in a discussion about their experiences in having participated in the interviews and to provide a closure to the study. It was also provide for an opportunity for the researcher to thank all parent participants for their involvement in the present multiple case study. Procedure. The second focus group (October 2006) was the final activity of Stage One. The scheduling for this second focus group followed similar steps were to the ones completed for Focus Group 1. Four parents from the four participating families confirmed attendance at a previously agreed date and time (an evening on a weekday) and at the same IDP of BC location as the previous time. Two of the parents who had attended Focus Group 1 participated in this focus group, together with one of the parents from another one of the family who had not taken part of the interview Only in Stage One of the data collection process 93 process. The remaining two participating parents (Family 4) were not able to attend because of an unforeseen conflict with a family religious celebration. Both parents had participated in the interview process, but had also missed Focus Group 1 due to illness. Content. Focus Group 2 asked parents questions about their impressions and reflections having partaken in the interviews. These questions also provided parents with an opportunity to share express further suggestions and recommendations for future research and early intervention and special need services provision. Appendix H includes a copy of the description and questions posed during the Focus Group 2 discussion. The final question in this discussion was “Do you have any additional comments, any closing thoughts, suggestions, and/or recommendations?” Since Focus Group 2 was conducted after the final set of interviews in Stage One, those participant parents not attending the group did not have the opportunity to respond to this particular question. In Stage Two of the data collection, however, the question was woven into the closing component of the last interview for all three-participant parents/guardian. Phase 2 Data transcription. Audio-recorded data collected from Focus Group 1 discussion, Interviews #1 through #3 and #4 (depending on the family) and Focus Group 2 discussion between October 2005 and July 2006 (Stage One), and between January and March 2007 were transcribed with the aid of the Sony Digital Editor Program. The data transcription from these primary sources combined textual (verbatim) with summarized transcriptions, following Quinn-Patton’s (1987) 94 guidelines for transcription. Transcriptions were typed onto Word documents. Time slots with minutes and seconds were entered for each of the participant’s comments that was transcribed verbatim, and that were connected or next to summarized comments. Registered time slots ensured the verifiability of the transcribed materials, and assisted in the process of intercoder reliability, to be described in the data analysis section that follows. Finally, summaries of memos that followed some of the interview sessions were also transcribed in April 2007, by a research assistant hired for the data analysis process in this study. A similar process was followed for Stage Two. Technical difficulties. This researcher experienced recording difficulties during two of the data collection sessions. Focus Group 2 had only 20 out of 30 minutes recorded, and interview 4 (Family 6) was not recorded. For Focus Group 2, content revision of the session during the final member checks with individual families (Stage One) ensured that the key points were captured. For interview 4 (Family 6, in Stage Two), this researcher immediately transcribed and summarized the interview and completed a member check with the participant within the week that followed the interview. The researcher recorded this member check session and re-transcribed the participant’s edits, comments, and additions into the interview. Although the transcribed interview had fewer verbatim quotes, both the participant and this researcher determined that the contents of this interview were mostly intact and accurate. Ensuring anonymity and confidentiality. This researcher maintained anonymity and confidentiality at all times during the transcription of the focus groups, interviews, and memos. All of the personal and agency, organization, and program names 95 mentioned during the focus groups and interviews were substituted by number id’s for participants; pseudonyms were utilized for some agencies and programs in order to minimize the risk of identifying the participants (parents and children). The Data Analyses section in this chapter includes the description of a fifth and last set of activities involving the re- contacting participants for member-check procedures including the revisions of the reviewed files, the revisions of the transcribed interviews and the revisions of the coded interviews. Data Analyses Content Analysis Content analysis was the selected method of data analysis utilized to interpret participant parents’ coded responses mainly derived from transcribed and revised focus groups and interviews (Holsti, 1969; Krippendorf, 2004; Roberts, 1997). Content coding was used to interpret the identified themes (Berg, 2001; Krippendorf, 2004; Roberts, 1997) that would emerge out of the different categories. Thematic content analysis is situated within qualitative content analysis. In contrast to quantitative content analysis, qualitative content analysis includes quotations illustrating the identified categories, as opposed to counting the instances of responses (or frequencies), and presenting them in tabular form according to different categories (Wilkinson, 2004, as cited in Silverman, 2006, p. 163). For example, the theme “Cycle of Disability” referred to parents’ cyclical encounters with their children’s special or unique needs that had to be addressed. Several categories provided examples for this theme, for example, the category labeled “Awareness of Child’s Development.” 96 Categories grouped examples of participants’ responses. Categories were labeled with key terms that captured the essence of the examples coded; for example, participants’ responses referring to instances where they had felt “empowennent” were included within the category labeled “Empowerment.6”Thematic coding was used in combination with “item” analysis (by interview topic). The coding process incorporated both “in-vivo” and “sociological constructs” (Strauss, 1987, pp. 33-34) and sought for explicit —or manifest-- themes (Berg, 2001). In addition, and considering the ethnographic character of the study, a combination of text analysis ran through the interpretation of the reviewed files used for data triangulation. Text analysis used the written comments from consultants or other professionals entered in home visit reports, telephone memos, or evaluation reports. Within the ethnographic tradition of this study the transcribed contents from file reviews would assist in the representation of reality (Silverman, 2006, p. 168). Altheide & Johnson (1998) explain how researchers use a social-anthropological approach when they acknowledge and understand that the context provides meaning during the interpretative process (p. 307). The Results chapter includes examples of the coding process. Integrity ofstudy There were safeguards in place to protect the integrity of the study throughout the data analyses, including inter-coder reliability and inter-coder audibility, or “external audit” practices (Glesne, 2006, p. 38). (1) Ensuring inter-coder reliability required for the researcher and a trained research assistant to review the coding 6 Note: It is important to note, that in order to obtain a preliminary overview of the most commonly used examples for the across-participant (or Inter-participant) analyses, this researcher initially conducted a frequency count of categories and their association with some of the themes. These frequencies provided an overall “map” of participants’ responses that guided the first level of data analyses. (M.P., June 6, 2008) 97 procedures, using online and written transcripts, and with the help of N’VIVO qualitative software (Scholari, TM) (QSR International, 2002). There was an established 90% baseline of agreement between the two coders. Inter-coding disagreement was reported and alternatives were presented (Stage One). Similar processes were replicated for Stage Two. (2) With the aid of N’VIVO software, he researcher and the research assistant followed inter-coder audibility practices. These practices required the maintenance of transparency of steps throughout the coding process, until the establishing of categories and subcategories and both the researcher and the research assistant reaching an agreement with regards to the emerging themes (personal communication, J. Nicholls, December 6, 2006; S. Reibling, April 28, 2008). This researcher also followed external auditing practices (Glesne, 2006) through ongoing supervision with her supervisor and methodological advisor throughout the data collection and interpretation of the findings (M. Buchanan, personal communication January 2008, May 2006, April 2008). Training. In order to ensure the technical integrity throughout the coding process, this researcher and the research assistants in Stages One and Two of the data collection process received training and/or refreshment sessions in accessing and utilizing the NV1VO software. This researcher and the research assistant in Stage One attended an introductory and a second training NVIVO 7 session dictated by the Teaching and Academic Growth (TAG) Centre at UBC. This researcher also attended an advanced follow up session offered through the same centre. The research assistant in Stage Two was already trained in this software through her graduate program, and required a one-time refreshment session with this researcher in order to familiarize 98 herself with the newly upgraded version of this program (N’VIVO 8) and to clarify and agree on the coding techniques and commands. Dependability and Representation This researcher evaluated both the dependability and the level of representation through member checks for all the sources of information. A description of how this first stage of member-checks was completed follows. Member checks throughfile revision sessions. This researcher met with each one of the parents who had participated in the interviews to conduct an exhaustive file revision session. The purpose for these sessions was twofold; one, to ensure the integrity in the researcher’s capturing of the information in the child’s file; and two, to verify key background information about the child and family, as well as the sequence of medical, family, and program events with which the family had been involved. These sessions lasted for approximately 30-45 minutes, while the researcher, together with the participant parents read, edited (added, or modified) the information that had been entered about the participating child, checking for accuracy —in terms of the information being complete and correct. The researcher advanced to parents the possibility of crossing out or deleting any segment of information that they would consider unnecessary. Although participant parents completed edits related to accuracy of the data or data omission, they did not request to delete information entered at any point during the file revision process. Quite the contrary, parents often added new and insightful observations or comments during file revision sessions that the researcher entered later on in the form of memos. Member checks of transcribed interviews. The purpose of these meetings was 99 to confirm the verisimilitude of the families’ different experiences and what was captured in terms of their relationship with IDP of BC, for families who received home visitation services, and from those who attended the “waitlist monitoring” consultations. Moreover, these sessions touched on and captured similarities and/or contrasts of service provision encountered by participants and on their relationships with other program consultants and/or therapists. This researcher re-contacted parents to review the transcribed and printed interviews. The identification of the transcribed interviews included case number, interview number, and date completed. Parents received instructions to read, carefully, each one of the transcribed interviews, and to edit and do corrections and modifications wherever they deemed necessary. Overall guidelines for parents’ member check sessions included inviting parents to reflect on their own recollection and to acknowledge their level of comfort upon re-examining the information they had previously shared during the interviews. Of the 11 parents who signed consent to participate in the study, seven out of the eight parents who participated in the interviews reviewed the transcribed interviews. This process took an average of two to three 30-minute sessions with the researcher. One of the parents completed only one review session with the researcher (Interview #1), and chose to revise Interviews #2, #3, and $4 on her own time (Family 3). This participant parent accepted the offer of this researcher to deliver the remaining interviews to her home address in a sealed envelope. The participant returned the revised interviews for pick-up within a period of two weeks. All participant parents who reviewed the transcribed interviews included the following edits: (1) clarification comments; (2) addition of missing contextual 100 information; (3) re-wording some of the researcher’s summarized transcriptions; (4) checking accuracy in quotes; (5) typos. None of the parents chose to delete any of the information shared during the interview sessions. It is important to note that there was an extended invitation to take part in the file and interview revision sessions to the three parents (fathers) in those families who had agreed to participate in the study, but who were not available to take part in the interviews. None of these fathers attended these sessions. Revision of transcribed Focus Groups. There were no member check sessions conducted with participant parents in Stage One to revise the Focus Groups transcriptions. There were, instead, revisions of the contents of the introductory question in Focus Group 1 and the closing question in Focus Group 2 discussions with participants (in Stages One and Two) through the member check sessions corresponding to Interviews 1 and 4. Criteria for Evaluating the Worth of Study Validiiy In the post-positivist paradigm, determining the validity of the findings that were interpreted through content analysis is of paramount importance (Krippendorf, 2004). Determining validity, as a construct, implies that the researcher ensure the truthfulness of the study findings through results that “speak to as many as possible” (Riffe, Lacy, & Fico, 1989, as cited in Krippendorf, 2004, p. 313). This researcher followed Riffe et al.’s (1989) “Typology of Validation Efforts in Content Analysis” (p. 319) to examine the validity of the findings of the present study using its three 101 validity constructs: (1) face, (2) social, and (3) internal validity. Face validity. Also termed “common truth,” face validity refers to how findings make sense to others. The examination of face validity took place with different representatives, as will be further elaborated in (3) “Internal validity.” The question posed during these presentations and meetings was, “Do the categories presented in these findings make sense to you?” (a) Participant parents, through the revisions of the different file and interview transcriptions and through the member check sessions once the interviews were coded (2006 - 2008); and, (b) representatives from the IDP of BC, including informal presentations to staff and formal presentations to the Program’s Steering Committee and Board (2005 — 2007). For example, following the first set of member checks with participant parents (Stage One), and during Stage Two of data collection and data analyses, this researcher maintained ongoing consultation and sharing of preliminary findings with the JDP of BC representatives (consultants, coordinators, Board members) on a quarterly basis (an average of three yearly presentations). Social validity. Social validity refers to the way others make findings acceptable. This type of validity examines the ‘practicality’ of findings (e.g., how to translate these findings into actions, and how they are relevant, beyond their academic meaning). An example of the examination of social validity includes the periodic presentations conducted with representatives from other groups. Presentations included (a) academics (personal communication with supervision committee, 2005, 2006, 2007); (b) fellow graduate students (meetings in January 2006; November 2006; November 2007); and, (c) delegates to local and international workshops on early 102 intervention sharing their findings (May 2007, June 2007, July 2007, November 2007, and January 2008). Presentations ended with the researcher asking for comments and feedback from the audience in terms of the relevance and practicality of the findings. The final structuring of the methodology, as well as the presentation and interpretation of the findings of this study, incorporated the comments, feedback, and ideas that came from discussions with these representatives. Internal or empirical validity. This study consistently adhered to the principles of internal validity throughout the different research stages already described. The Results chapter of the study presents an exhaustive analysis of the findings, according to the criteria for internal validity, listed as follows: The first criterion refers to the findings of this study representing evidence in response to the study’s research questions. In addressing this first criterion, the organization of the findings followed a response to these questions. For example, to address the research topic on parents’ perceptions of their experiences with early intervention on (a) early childhood development, (b) parenting, and/or (c) family dynamics in families with a child at-risk for developmental delays, or diagnosed with, developmental disabilities, this researcher ensured that the findings would portray parents’ responses. Coding these responses into specific categories; for example, early memories, perceptions, hopes, and values, as well as their first experiences and events within the program ensured that participants’ responses would be utilized as evidence to address the research topic in this study. The integrity of this process, reaffirmed through inter-coder reliability procedures and through member checks allowed, in turn, the confirmation of the salient themes emerging from these responses. A similar process was followed through the first, second, third and fourth specific questions. The second criterion refers to the findings 103 analyzed and interpreted presented resonating with findings from other research, concerned with related topics, for example, the experiences of parents with children at-risk for developmental delays, and parents and children who have received early intervention services. Meeting this second criterion for internal validity requires of the contextualization for the themes that emerged from participants’ coded and categorized responses. This, in turn, entails drawing on relevant findings derived from research that is germane to the topics of parents’ experiences and early intervention for developmentally at-risk children. The third and final criterion refers to the sampling validity of members and of representatives. This study met with both of the sampling validity criteria through the completion of several member check sessions with participants, and asking participant parents, as members, “Do these findings represent you as a participant parent in the IDP of BC, having children who are at-risk for developmental delays?” The sampling validity of representatives referred to asking participants about their representation through the experiences shared; for example, “Do these findings represent ‘your [transitioning] experiences’ as a participant parent in this study?” The description of the second and third member check sessions with participants illustrates ways in which the study addressed the sampling validity criterion. Second member-check session. A second set of member-check procedures with participants followed the initial ones previously described through Stages One and Two of data collection. In addition to adding to the rigor of the study in terms of integrity and verifiability, this procedure supported the representation of participants’ voices throughout the data analysis process. Following ethics approval to re-contact participant families, this researcher mailed summaries of the parents’ coded responses 104 to the three to four interviews they had previously completed. The researcher met with participants in individual sessions and asked participants: “Do these categories and themes make sense to you?” Four participant parents in Stage One representing each one of the families reviewed the individual summaries, and verbally expressed the researcher their understanding and agreement with the coded responses. Third member-check session. A third and last member-check session was attempted when all of the preliminary findings for Stage One were integrated. The procedure included the mailed summary of the study’s findings to all participant families. The cover letter in this last package invited participants to provide feedback to this researcher (in person, via telephone or email communication, or in writing, through mail). Participants were to respond to the question, “Do you see yourself represented through these categories and themes?” Only one participant parent (Family 2) responded and agreed to meet with this researcher, stating that as a parent she understood and saw herself represented. There were no responses from families 1, 3, and 4. A limitation to complete this last set of member checks derived from the fact that the ethics consent did not allow the researcher to re-contact families over the telephone. This researcher interpreted the restriction imposed by the ethics committee in terms of the extensive length of time between the first, second, and third member check sessions (2006 to 2007), and the fact that re-contacting parents could have posed unnecessary pressure on participant families. At the same time, there were no summary packages returned in the mail; consequently, this researcher assumed that all participant parents had received the packages. Moreover, there were no letters, telephone calls, or emails from the former participants following the mailing of the 105 packages. Therefore, (1) having received previous feedback from participants regarding the first and second set of member checks, and (2) in the absence of further information from participants indicating any concerns about the summarized coded material, this researcher is confident in her meeting the criteria for sampling and semantic validity while addressing issues of internal validity of the study. A slightly different process occurred with Stage Two participants. During the second member check session, Mother and Father 5, and Grandmother 6 enquired about other participants’ perspectives, while reviewing the integrity and verifiability of the categorization process. This questioning process led to a discussion where these participants expressed their sense of representation through the categories and themes validated throughout these sessions. Semantic validity is the final criterion listed within the construct of internal validity according to Riffe et al.’s (1989) typology, posing questions such as “Do the categories and emerging themes accurately describe the meanings of the experiences of participant parents in this study?” The formulation of these questions was not limited to member check sessions with participants, but they were also present in the activities described for face and social validity. Issues ofEthics and Rigor and Issues ofRepresentation This study evaluated its credibility by finding out how reliable and verifiable the information was following the conceptualization into categories (Lincoln & Guba, 1985, 2000). For example, as researchers, we make statements about relationships and validate these statements with the data (e.g., “When certain conditions are present, then parents experience... (Or “believe,” “feel”). The second and the third member check sessions represent this researcher’s ongoing questioning process. Questions 106 formulated during these sessions included: “Is the information verifiable?, and Are the issues to be explored in this study a ‘true’ reflection/expression of the DP of BC issues as represented by the participant parents?” Through this process, exemplified within the section describing the validity constructs, participants had also the opportunity to express their power and voice. Once again, maintaining the commitment for privacy and confidentiality of the transcribed and coded information of participants during the data collection stages continued to be a priority through the subsequent member check sessions. Issues ofRepresentation Representation using narratives and tables. In order to accurately represent participants in this study, a combination of narrative and summarized information in tables was used. Numbers were chosen over pseudonyms to identify Families, Parents, and Children; for example, Family 1 comprised Child 1, Mother 1, and Father 1 during data collection activities and throughout the data analyses. The exception were Children A and B in Family 3. The choice of a numbering system over pseudonyms responded to a decision to maintain clarity and consistency throughout the data collection, data analyses and interpretation processes, given the wealth of data collected in the present study. Voices ofparents representing their children. In this study, the voices of children are represented through the voices of their parents, and through the text originated in the reviewed IDP children’s files. The lack of participation of children under represents the voices of all family members in this study (Denzin & Lincoln, 2000). This is acknowledged as a limitation in the present study, and further discussed 107 in the recommendations for future research. In spite of this limitation, the study maintains its purposes of examining the parents’ experiences of the impact of early intervention (Tedlock, 2005), and trying to understand the meaning of these experiences (Miller et al., 2005). This is accomplished by reducing the narratives of parents and the information retrieved through text files through categories summarizing and labeling parents’ experiences (Krippendorf, 2004). The analysis and interpretation of such categories results in the surfacing of themes. Each theme, in turn, represents meaningful issues for parents in this study and provides the context for the interpretation about their experiences. Representativeness in this study pertains only to the participants of this study. Issues of Voice In addition to recognizing the participants’ many voices as individuals, parents, and members of a distinct collective community of parents in the IDP with children who are developmentally at risk, the study acknowledges the multiple roles played by the researcher when meeting families. Exploring the role of the researcher came first. In her role as an investigator, the researcher is an outsider. At the same time, this investigator’s previous training as a former infant development consultant and as a teacher working with children with suspected or identified special needs allows her to both have the familiarity with the IDP of BC that it is required by the nature of the study within the ethnographic tradition described earlier (Miller et al., 2005). Despite the researcher’s perceived role of an “outsider,” there is also anticipation for the researcher to be somewhat familiar with issues experienced or expressed by the participating families. Likewise, the researcher of this proposed study is a parent. 108 Nevertheless, in the present circumstances of the researcher, no shared issues exist around child rearing in parenting a young child who is developmentally at-risk. Exploring the role(s) of parent participants was next. This relates to the previous statement on the many voices of participants. At all times, this researcher ensured the issue of “verification of the representation” for each one of the participants in their different roles. These included their roles as individuals, acknowledging their gender, and the gender of the researcher conducting the data collection, their roles as “parents” of children who are developmentally at risk, and their roles of “members of specific communities” (Miller et al., 2005). This researcher also checked with the participants about their self-perception within each of these roles; for example, whether they perceived themselves as included, partially included, partially excluded, or definitely excluded from their ‘communities.’ Finally, the study represents the dissertation proposal for this researcher. Therefore, in her role as a graduate student, this researcher can present and explain to her committee and supervisor for all of them to assess whether or not the ‘model’ is appropriate and reasonable (Buchanan, personal communication, May, 2006). Berg (2007) commented on similar issues in his discussion about the attitude of the researcher, and his or her motivation for guiding their ethnographic research (p. 182). Summary This chapter described the framework supporting this multiple case study. The study is situated within the ethnography tradition of inquiry and grounded in a post positivist epistemological stance. The study used content analysis as the method to conduct data analyses to identify the themes emerging from participant parents’ 109 voices. The study comprised six family cases. Information obtained through multiple methods of data collection, including file reviews, interviews, focus groups, and memos or theoretical notes secured a data triangulation process. A rigorous process of data verification and inter-coder reliability followed in order to ensure integrity. Member checks with participant members and with other representative determined the truthfulness (validity) of the findings and ensured the representation of participants’ voices. The chapter includes a final mention of the different roles played by participants and this researcher throughout the study. 110 Chapter IV: RESULTS Introduction This chapter presents a summary of the findings of the study. The presentation of the findings is based on the interpretation of participants’ responses in focus group discussions and semi-structured interviews; the validity of findings was further triangulated with the examination of participant children’s file reviews. Thematic analyses of these responses were completed through the identification of common patterns. These analyses addressed the research topic, on parents’ perceptions of their experiences with early intervention on early child development, parenting, and/or family dynamics in families with a child at-risk for developmental delays, or diagnosed with developmental disabilities?” And, four specific questions: (1) What are the individual experiences of parents of developmentally at-risk children and their families who participated in the 1DP in terms of their child current developmental needs? (2) What are the individual experiences of parents of developmentally at-risk children who participated in the IDP in terms of access to resources and programs? (3) In what ways do the individual experiences described in 1) and 2) relate to the current preschoollschool demands on these parents? (4) In what ways do the individual experiences described in 1) and 2) relate to the demands from other family members, and to financial/work pressures? An in-depth process of thematic analyses, using the qualitative content method of data analysis (Silverman, 2006) led to the identification of a first set of main 111 themes, and then a second set of dominant themes. Thirteen main themes derived from the analyses and interpretation of the across-participant results. The thirteen themes included the following: (1) Theme 1: Memory, memories. Remembering facts, events, processes, and issues from birth to school age. (2) Theme 2: Access to Programs and Services. Parents’ experiences accessing a variety of programs and services throughout the years with the IDP and after their discharge. (3) Theme 3: Effectiveness of services (Stage Two). Parents’ comments about how services and programs met their individual needs. (4) Theme 4: Cycle of (Anticipation/disability). Parents’ ongoing over/covert concerns as the child grows a) confronting the needs/demands of a child with a disability/delay; b) anticipation about child ending up with a developmental condition associated with pre-, peri, or post-natal factors. (5) Theme 5: Parents’ Multiple Roles. Parents’ comments on their daily lives, routines and different roles played at home; for example, how responsibilities are shared and juggled among family members. (6) Theme 6: Parents hopes and expectations (Stage One). Parents’ comments about their hopes on programs’ features and services received or anticipated results from these services. (7) Theme 7: Roles of Consultant, Therapist. Comments describing the diverse roles played by consultants and therapists in the IDP and other intervention programs when working with families. 112 (8) Theme 8: Understanding and dealing with the system. Parents’ comments on their efforts to grasp the way the health, educational and/or social services systems function and their experience in confronting the complexities of each one of these systems. (9) Theme 9: Stressors. Examples of compounding stress situations, events and factors that have a direct or indirect impact on the family’s quality of life - and specifically when a child is considered at-risk and/or with special needs; I.e. financial or job related, as illustrated by related categories. (10) Theme 10: Issues with funding (Stage One).Parents’ comments of the difficulties and obstacles they have encountered when following steps to obtain funding. (11) Theme 11: Parents priorities (Note: Theme and category for Stage Two). Parents’ comments on their individual ideology, belief systems and preferences with regards to approaches in service delivery and intervention to foster their child’s development.. (12) Theme 12: School Registration Process.7Parents experiences during the period of time preceding Kindergarten registration. (13) Theme 13: Encompassing Theme Interviews and Focus Groups: Time, Timely, Timing8 These themes, in turn, guided the analyses and interpretation of within- participant results. The findings drawn from the participant analyses were the result of in-depth and “thick” analyses (Geertz, 1973). In his essay,” Thick description: Identified after inter-coder reliability process completion Confirmed following the completion of inter-coder reliability process and the reporting of intra participant findings. 113 Toward an Interpretive Theory of Culture,” Geertz describes thick analyses as “a stratified hierarchy of meaningful structures” (p. 7). Such structures provided a specific context that allowed this researcher to maximize the consistency and precision in the interpretation of these within-participants’ findings; and effectively complemented their counterpart across-participant analyses. Out of these two complementing strategies of data analyses, seven dominant themes surfaced, and four categories. These dominant themes and categories address the research topic and specific research questions in this study, and do a final integration of the outcomes of this study (see Table 3). Table 3. Seven Revised Themes Research Questions Revised Themes and Categories Resarch Topic: Parents’ 1. Family Centred Approach and Home Visitation Services Perceptions of Experiences of Early Intervention Specific Question 2) 2. One to one relationship with Consultant/Therapist Access to Programs and 3. Inclusion of all family members Services Specific Question 1) 4. Collaborative consultation Developmental Needs of . . . Parent consultation, listening to Joint decision making Children parents, and empowerment 5. Effective knowledge translation in sharing information/resources 114 Table 3 (continued) Specific Question 3) 6. Case Managing and Service Coordination Preschool, daycare and/or Role of consultant(s), and Loss of supportfollowing transition school Needs service coordination to school following discharge Specific Question 4) 7. Stressors that Become Barriers Needs of Family (logistics, Complexity of issues and Health risks and disability, child job, financial) logistics in participant care availability, and the impact on families participantfamilies’ job and financial conditions Table 3 shows the variations in the labeling of some of the dominant themes when compared to the labeling of the main set of themes. These variations respond to a combination resulting from the assimilation of key elements from existing categories. Such assimilation came forward during the above-mentioned integration of across- and within- participants’ outcomes. Chapter overview. The chapter is organized as follows: (1) a description of the findings examining features and patterns common or shared among participants, or, “Across Participants Findings”; (2) a description of the individual accounts of each on of the six family cases, or “Within Participant Findings” and (3) a summary and interpretation of the findings in response to the research topic and to the four subsequent questions. 115 Across-Participants Findings The findings in this section report features and patterns observed across the six family cases. This first set of analyses were undertaken in order to provide the platform to address the research topic on parents’ perceptions of their experiences with early intervention on early child development, parenting, and/or family dynamics in families with a child at-risk for developmental delays, or diagnosed with developmental disabilities. The section consists of the following five sub-sections: (a) A summary of the findings from file reviews; (b) a description the organization of the findings of the focus groups and interviews; (c) a description and summary of the findings of the two focus groups; (c) an overview of the patterns and features identified through the semi-structured interviews; and, (d) a concluding summary of the participant findings. Summary of Findings from File Reviews Overview The information retrieved from file reviews of the seven participant children (see Appendix I) provided this researcher with the background and context needed to address the research questions in the present study. Moreover, this researcher used this information as a source for the triangulation of the data obtained through the individual interviews, and validated through member check sessions (Lincoln & Guba, 2000). Four groupings identified with letters a), b), c) and, d) expose the type of information transcribed and summarized from the file reviews. These consist of the following: (a) descriptions of the children’s individual profiles between the ages of 0 and 3 years (see Table 1 in chapter 3, for demographic information on participant 116 children and participant parents). These profiles mainly derive from information collected through three sources; the Referral Form (see Appendix F); the Central Registry Form (see Appendix E); and, tests, screening and assessment reports summarized in the file reviews (see Appendix I); (b) Family Needs Assessment Questionnaires (see Appendix A) and/or Post-Service Program Evaluation Surveys containing information and comments written by the children’s parents (see Appendix C); (c) DP consultant comments written on the home visitation records, telephone contacts, or on-site consultation summaries (see Appendix G). These records and summaries render the consultants’ summaries of the activities completed, in addition to their follow-up comments and suggestions; and, (d) this researcher’s comments with her reflections on the file material reviewed (see Appendix K). Ten common aspects were identified across the reviews of participant children’s files. These included the following: (1) Age of referral: Six out of the seven children were referred to the IDP by the time their children were age 6 months, with wait-times between referral and intake of under four months (the range was one to three months). (2) Reason for Referral: Child 1, Child 2 and Child A (Family 3) were referred to the IDP under the category “developmental delays” (see chapter 2, “Definitions of Terms). The JDP statistics report that approximately 35% of yearly referrals are completed under this category (Office of the Provincial Advisor, 2004, 2006). Child 3 B, Child 5 and Child 6 were referred under the “at-risk” categories (see chapter 2, 117 “Definitions of Terms). This category represents approximately 30% of yearly referrals to the IDP (Office of the Provincial Advisor, 2004, 2006). (3) Referral source: For Child 1 and Child 4, the pediatrician was the source of referral, whereas for Child 1 and Child 3 B it was the public health nurse. The public or community health nurse is the most frequent source of referral for the LDP (Office of the Provincial Advisor, 2004, 2006). (4) Medical follow-up: Child 1, Child 2, Child B (Family 3) and Child 4 in Stage One had a medical diagnosis or combination of identified health conditions by the time of their discharge. These conditions ended up impacting on the children’s development at a moderate to severe level of intensity according to the information on their files. (5) Gestational Age: All participant children but Child B (Family 3) and Child 5 were born at term, between 38 and 40 weeks. Child B and Child 5 were born pret-term (35 and 36 weeks, respectively). All full term children were also born with normal birthweight over 3500 g (see Definition of Terms in chapter 1). Child 1, Child 2 and Child 4 received genetic-related diagnoses and were full-term babies. All but Child A (Family 3) in Stage One ended up requiring neonatal intensive care treatment after birth following additional post-natal medical complications. (6) Referral to pediatrician: All seven participant children were seen by a pediatrician. Moreover, all children, but Child 6, were followed-up by a pediatrician and continued to be under medical surveillance until they 118 were discharged from the IDP. (Child 6 was followed up by the family physician). (7) Referral to other specialists: All seven participant children were seen by medical and non-medical specialists between birth and age 3 years. Examples of medical specialists —other than paediatricians--included neurologists; cardiologists, and dermatologists. Examples of non-medical specialists included audiologists, vision specialists; speech language therapists, occupational therapists, and physiotherapists, among several others (see Appendix K). (8) Age at discharge: All children participants except for Child A and Child B (Family 3) were discharged at age 3 years; Child A and Child be were discharged at ages 42 and 43 months, respectively. Although the mandate of the IDP is to complete the process of discharge by the children’s third birthday, the program’s mandate states that services may continue throughout the child’s third year if there is an identified need and with parents’ previous consent and agreement (see the Infant Development Program’s website: www.idpofbc.ca). (9) Diagnosis at the time of discharge: Child 1, Child 2 and Child 4 had confirmed diagnoses that were linked to a genetic condition identified and/or confirmed soon after birth. One of the children (Child B, family 3) was diagnosed with a neurodevelopmental condition that was also linked to a genetic condition by age 4 years. 119 (10) Special Needs designation for children in Stage One: Although not all children in Stage One received a medical diagnosis at the time of discharge, they all qualified for a “special needs” designation by the time of their discharge from the IDP. These children were liaised for services with the BC Centre for Ability in order to obtain additional therapy support during their preschool years, and/or supported child care during their elementary school years, through the Supported Child Development Program. Hebbeler et al’s (2007) report on early identification and early intervention includes comments on how diagnostic confirmation and assignment of special needs categories for children under the age of 5 years are most common when early intervention services have followed these children up under the “developmental delays” referral category. Varying information across the participant children files included the following information: (1) Age at Referral: Child A in Family 3 was referred at age 3 years old following his younger sibling’s referral to the program; (2) Referral sources: Child A (Family 3) was referred by his parents; Child 5 was referred by a pediatric physiotherapist at the Provincial Children’s Hospital; and Child 6 was referred by a social worker from the Government Child and Family Services; (3) Diagnosis at discharge: No developmental concerns were reported for children in families 5 or 6 in Stage Two at age three, at the time of discharge. File revision sessions confirmed the following: (a) Child 6 was 120 liaised with the BC Centre for Ability upon the recommendation from the IDP physiotherapist to receive physiotherapy monitoring. Details on this follow-up are explained in Family 6 individual account in the section reporting the within or participant findings; and, (b) neither of these two children had received a special needs designation by the time of completion of the data collection process, at ages 5 and 4 1/ 2 years, respectively. Additionally, files reviews confirmed information about the levels of services provided for the seven participant children, and about the programs they attended. All five children in Stage One of the data collection received home visitation services. Children in Stage Two attended waitlist or monitoring sessions. Child 1, Child A and B (Family 3), and Child 4 attended sessions of the Parent-Child Mother Goose through the IDP. All participant children, but Child A, received physiotherapy consultation through the IDP. Table 4 represents the families’ different transitions experienced at the time of the data collection (Stages One and Two). 121 Table 4. Participant Families: Services Received and Transitions Stage One (Established risk; Home Visitation Stage Two (Suspected services) risk; ‘Waitlist Monitoring Consultation services) Case# 1 2 3 4 5 6 Child Child Age of transition to A B 2* 3 preschool/daycare 3 4 4+ 3 3 Initiator IDP Family IDP IDP IDP Family Family * Child development centre, then preschool. 122 Table 4 (continued) Stage Two Stage One (Suspected risk; Waitlist (Established risk; Home Visitation services) Monitoring Consultation services) Case# 1 2 3 4 5 6 File File File File File File reviews; reviews; reviews; reviews; reviews; reviews; Interviews; Interviews; Interviews; Interviews Interviews Interviews Sources of data Focus Focus Focus Group 2 Groups 1 Groups 1 and2 and2 Child Child A B Support and/or No No*program YesYes Yes Yes Yes(at age 4) Yes Yes Transition to school (completing (completing (K- 3) Yes Yes Yes No No K K Registration) Registration) Special Needs At At Yes Designation (for Yes Yes age age (Child No No school) 4y 4y age 3) * File closed at age 4 ½; never used services ** Permanent designation for school Table 4 shows similarities and differences among the seven participant children within the six family cases in the transition process experienced by their 123 families, and in the support services and designations obtained. Table 4 also displays the sources of these data. Children 1, 2, A, B (Family 3) and 4, in Stage One ended up receiving special needs designation by age 5 years, while children in Stage Two families did not receive any designation or specialized support. Details on each child’s profile and findings are presented in the within-participant findings section of this chapter as well as more information on the families’ specific interactions and relationship with the IDP program and with their consultants (see Appendix K). In sum, an overview of the reviewed files provided rich information on the multiple services provided for participant children between the birth and age 3 years and the numerous contacts between parents and consultants/physiotherapists. Examples included referrals to different specialists and included records of the multiple tests and/or progress reports completed. The characteristics of the home visitation or waitlist/monitoring sessions were described, as well as the discharge process. The files indicated whether or not labelling or special needs categorization were completed, and listed follow-up activities recommended for each child. Although common aspects for most participant children were identified, the complexity and variation between each child’s file of the data reflects the individual character of each one of the intervention services provided for the six family cases. At the same time, the organization of these files follows similar criteria concerning the organization of their contents. This organization facilitated the transcription and categorization of the extensive anecdotal information entered by consultants and physiotherapists. Therefore, the findings from files provided a unique reconstruction of times and events in the early intervention support process provided for each one of the children and 124 their families. Such reconstruction of times and events supported and complemented the information relayed by participant parents through the individual interviews. The next section describes the organization of findings from focus groups discussions and interviews. Organization ofFindingsfrom Focus Groups and Interviews Overview The presentation of the findings from focus groups discussions and semi- structured interviews was completed through the categorization of the data. In addition, findings derived from secondary sources of data collection; for example, memos and theoretical annotations, were utilized to complement the data, and were used as sources of verification (Denzin & Lincoln, 2000; Lincoln & Guba, 2000). An association between these secondary-source findings with their corresponding primary source assisted in the process of highlighting of the findings derived from primary sources of data collection. This association process was repeated in the case by case presentation of the findings, reported in the within-participant analyses. The elements above enumerated provided further consistency in the presentation of the findings; in turn, this consistency added to the internal validity of the present study. In contrast to the individually-reported participant responses from interviews, contributions deriving from the focus groups’ discussion were reported in group responses. Key terms were identified to sort these responses. Using these key terms assisted this researcher in the coding of group responses into categories (Silverman, 2006). These broad categories were organized within an overarching topic termed as “Participants’ Contributions.” Responses obtained through the discussion in Focus 125 Group 1 provided a “group” insight on the specific question, “What are the individual experiences of parents of developmentally at-risk children who participated in the IDP in terms of access to resources and programs?” For example, responses that were initially coded under the categories “Referral Source” and “Referral Process” during Focus Group 1 discussion session were also captured under distinct categories during the interviews (see Table 5). These distinct categories ended up emerging as two themes throughout the analyses of interviews coded responses: “Memory, Memories,” and “Access to Programs and Services.” These analyses revealed that “Memory, Memories,” and “Access to Programs and Services” contained some of the richest of the findings in the present study. For example, coded responses under “Access to Programs and Services” referred to parents’ experiences on their accessing a variety of programs and services throughout the years with the IDP and after their discharge. The theme portrays the wide variety of ways parents accessed diverse programs and services throughout their years with the IDP. The theme also reflects the similarities and differences in parents accessing programs before and after their discharge from the IDP. It also highlights the differences in the program’s structures and models of service delivery. The consultant in the IDP sustained the role of case manager in order for parents to access and attend programs or receive services. However, following their discharge from the IDP, Stage One parents took over a “case manager’s” role in order to reach out for other services and programs. Explicit quotes from Mothers 1, 2, 3 and 4 illustrate these roles further along in this chapter. These quotes show how the differences in service delivery models have impacted on participant parents. Such quotes are distinctly captured during the interviews through the theme “Roles of 126 Consultant/Therapist.” These preliminary findings substantiated specific research question 1) “What are the individual experiences of parents of developmentally at-risk children and their families who participated in the IDP in terms of their child current developmental needs?” and specific research question 3) “In what ways do the individual experiences described in 1) and 2) relate to the current preschool/school demands on these parents?” The next sub-section describes the processes that were followed to organize the preliminary and subsequent findings, by theme. Table 5. Focus Groups and Interviews: Categories and Sub-Categories. Categories Sub-categories Referral Source Referral Process Parents’ Examples ofParents’ Perceptions/experiences Perceptions/experiences Parents’ Priorities Parents’ values Program model of Examples ofParents’ Service coordination services: Description; Perceptions/experiences /service models compare & contrast Perceived misinformation 127 Table 5 (continued) Categories Sub-categories Awareness of Child’s special/unique Meeting child’s needs needs/Child’s development Barriers Perceived Communication issues misinformation Role of School Support Worker (Stage One)! Health Professionals (Stage Two) Family Logistics Childcare issues Organization of Findings by Theme The coding of participants’ responses involved a thematic grouping that led to their subsequent thematic analysis. The grouping followed four steps listed as follows: (1) Coding responses within general categories (entered through the N’VIVO software program as “free nodes”); (2) analysing in depth the content of participant’s responses, within categories, and identifying common threads to them. These threads emerged as “themes,” as illustrated in the previous section; (3) organizing these categories within the emerging themes, while refining categorization through the creation of sub categories; and, (5) additional refining of the categories and sub-categories. 128 A similar coding process was followed using participants’ responses from interviews, and, once again, from participants’ responses in Focus Group 2. The coding process for the interviews was guided by the earlier, broad categorization of Focus Group 1 discussion’s responses. Themes emerged as a result of the interpretation of the patterns identified through these categories. The grouping and labeling of categories, and the identification of themes deriving from these two data collection activities, in turn, informed the coding process and identification of the main themes listed earlier in this chapter. The themes emerged in the focus groups discussions were expanded on the individual topic of each one of the discussions. More specifically, comments that were coded and categorized from Focus Group 1 discussion gave rise to themes that emerged later on throughout the interviews, as indicated earlier on. “Stressors” was the only ‘topic-centred’ theme (throughout Interview #4); whereas “Time, timely, and timing” emerged as a background theme that provided a unifying thread to all of the identified themes. The description of the theme “Stressors” includes “examples of compounding stress situations, events and factors that have a direct or indirect impact on the family’s quality of life —and specifically when a child has a child considered at- risk and/or with special needs; e.g. financial or job related. The theme “Stressors” was repeatedly identified during Interview #4. Parents’ responses captured under this theme address the specific question, “In what ways do the individual experiences described in 1) and 2) relate to the demands from other family members, and to fmanciallwork pressures?” Participant parents in Stage One and Stage Two alike identified how circumstances associated with their child’s birth, their child’s medical 129 complications andlor developmental conditions, and ongoing struggle or anticipation of issues with regards to services provision, ended up impacting on their daily family lives, logistics and family issues. Two out of the remaining 11 themes did not emerge across all four interview topics; these included “Effectiveness of Services” and “Issues with Funding.” “Effectiveness of Services,” included comments about how services and programs met their individual needs. It emerged as a theme through Families 5 and 6 participants’ responses, in Stage Two, given the different contexts were associated for these responses. For example, responses from participant parents in Stage One specifically referred to their perceptions on the effectiveness of services when comparing service models between the IDP and the preschool- and school-based intervention programs and services provided for their children. In contrast, parents in Stage Two expanded on their evaluative comments referring to all services received until the time of data collection; for example, medical, early intervention, and social services received between their children’s birth and preschool andlor school entry. “Issues with Funding” included comments about parents’ difficulties and obstacles encountered when following steps to obtain funding. Funding issues were only confronted after children left the TDP. Before discharge from this program, families would not have needed to apply for external funding sources to receive services. Families needed to request or apply for special needs placements in preschools, daycares or out of school care centres. Parents with children already in preschool and school programs provided comments related to this theme, including Mother and Father 1, Mother 2, Mother 3, and Mother and Father 4 in Stage One of the data collection. Not having been 130 diagnosed or identified with a medical or developmental condition, neither Child 5 nor Child 6 qualified for a special needs category entitling their parents to apply for funding for additional services during their preschool years. These findings provide examples in response to the specific questions, “What are the individual experiences of parents of developmentally at-risk children and their families who participated in the IDP in terms of their child current developmental needs?” and, “In what ways do the individual experiences described in 1) and 2) relate to the current preschool/school demands on these parents?” Finally, the background theme, “Time, Timely, and Timing” captured an ever present concern for all parents in the present study. During focus groups and interviews, parents’ comments referred to these three words in reference to how hard it was to recall events that had happened a few years ago; and in reference to the notion of “when” early intervention services would happen. Overall, participant respondents mentioned that it was “hard,” or “difficult,” to remember some of the events happening during the first three years of their child’s life. When asked to respond to questions that related to these early memories and the experiences associated with them, participant respondents’ comments included the following terms or expressions: “a long time ago” (e.g.; Mothers 2, and 3); “it’s so emotional” (e.g., Mother 1); “so much happening at the time” (e.g., Grandmother 6); and, not quite remembering “what happened first” (e.g. this mother). These terms refer to “time” in different ways, including, (a) remote; (b) passed, and hard to re-visit; (c) difficulty to discriminate between one event and another happening at a particular moment; and (d) difficulty with the sequence of events, leading to some confusion, at times. 131 Addressing issues related to ‘time’ as a deciding factor; ‘timely’ events; and, ‘timing’ in receiving or accessing services, was key to meet their children’s needs. Examples from parents’ responses included the consultant arriving at the right time (Mother 4) or not soon enough to their lives (Mother and Father 5); the wait-time needed for certain services required to meet their children developmental and learning needs, and how they experienced this unused time for learning activities as lost time (Mother 1 and Mother 3); and, the many times parents have to check on their children’s health and well-being, and anticipating the next consultation, test, or treatment; for example, “When will it be the next time?” (Mother 3, Mother and FatherS, Grandmother 6). Summary This section presented a description of the organization of the findings, and the rationale supporting this organization. This provided a structure that substantiated the findings of the present study. The findings addressed the research topic on parents’ perceptions of their experiences of early intervention services on early child development, parenting, and family dynamics. At the same time, the findings responded to specific questions; for example, how parents dealt with specific issues related to their child’s developmental, and special or unique needs; how parents accessed resources; how they dealt with parenting issues related to their children needs during the preschool/school ages; and how they dealt with family, work and other related issues in their specific roles of parenting a developmentally at-risk child. 132 Summary ofFindingsfrom Focus Groups Findings from Focus Group 1 Participant parents’ responses to the introductory topic question on the “meaning of the study” were first classified into two sub-topics, namely, “Parents’ Responses” and “Referral issues.” “Parents’ responses” contained specific quotes from participant parents expressing their thoughts on why did they decide to participate in this study. “Referral Issues” included participants’ spontaneous comments reminiscing about the initial referral process to the IDP, as well as comparing and contrasting their own families’ experiences. The two sub-topics provided an umbrella for the categorization of participants’ coded responses. The theme “Rationale for Participation” emerged as a result of the coding and categorization process containing responses with explanations on parents’ reasons for wanting to participate in the study, how did they think it would be useful, and why is it important for them. Prompted by the topic question, Mothers 2 and 3 reminisced about their early years with the IDP during the Focus Group 1 discussion. They compared their early experiences soon after their children were born; recalled who had referred them to the IDP, and briefly talked about the referral process to the IDP. In spite of the discussion being limited to two participant mothers, the discussion was lively and flowing, and both participants followed each other’s train of thoughts. Mothers’ comments from this specific extract were grouped and coded into different categories labelled “Continuity of Services,” and “Parents’ Hopes and Expectations” (the second category emerged as its own theme during the data analyses of the interviews). At the same time, Mothers 2 and 3’s comments included the first 133 examples of coded responses that were grouped into the categories, and gave rise to themes such as “Understanding and Dealing with the System,” and “Stressors,” also identified throughout the interviews. Additional examples of the coding process and its link with the interpretation of the findings are presented next. Focus Group 1 was a rich discussion that provided a first glance into the experiences of Mother 2 and Mother 3 before the interview sessions. Moreover, the thoughts and ideas these mothers brought to the discussion laid the grounds for the introductory questions that were later posed for Mother and Father 1 and 4, in Stage One, who could not attend the Focus Group; and, for Mother and Father 5 and Grandmother 6 in Stage Two since no focus group was held during this stage of the data collection. Examples of categories resulting from the grouping and coding the repeated conmients from Mother 2 and Mother 3 during Focus Group 1 included the following: “referral sources”, “referral process,” “access to programs and services,” “continuity of services,” “feelings,” “guidance and support received,” “information and knowledge translation,” and issues with funding”. For instance, expressions about the “referral process” included the following quote: Mother 3: I was pretty impressed that it kind of went faster than I thought...you know the nurse...getting you an appointment. Mothers 2 and 3 reminisced on their personal stories, and how they first were involved with the IDP. This researcher utilized the information derived from Mother 2 and 3’s responses dealing with their experiences about the referral process, and their first contact with the IDP, as a point of reference for further, in-depth discussion 134 during Interview #1 on the topic questions about their “Early Experiences” with the IDP of BC. Therefore, the focus group discussion was utilized as a platform, as indicated by Berg (2001) in his guidelines on the purpose and rationale for focus groups. More specifically, the responses collected through both focus groups discussions served as a basis to bring back questions during semi-structured interviews. This process prompted more elaborated responses from participants. Categories from Focus Group 1 discussion where essential to provide an initial coding framework for parents’ responses. This coding framework was further elaborated during the individual interviews, as participants proceeded to unfold their experiences during the different stages and transitions. In addition to the themes “Rationale for Participation,” “Memory, Memories,” and “Access to Programs and Services,” other themes emerged from a few of such categories, and they were salient during the interviews in Stages One and Two of the data collection. Inter-coder reliability check-in sessions. Further review of the coded responses for Focus Group 1 or Interview 1 introductory questions for coder reliability revealed 100% agreement for Stage One data collection (December 2006) and over 95% of coded responses for Stage Two data collection (May 2008). Recommendations for recoding responses in Stage Two under the theme “Rationale for Participation” included the creation of a new category “Explicit and Implicit Values.” This new category contains parents’ comments revealing value judgments and/or statements in their comments grouped under the overarching topic of “Participants’ Contributions.” Re-entering these comments under the new category, as a subordinate of the theme “Rationale for Participation,” revealed an important aspect of participants’ 135 introductory comments. This process helped refined the coding of Stage One participants’ responses. Findings from Focus Group 2 and Interview #4 Concluding Question Participant parents’ responses to the concluding question on the topic “Participants’ Contributions” emerged under the theme of “Closing comments.” These responses added another layer of depth and further context to participants’ previous responses in Focus Group 1 and through the introductory question to Interview #1 addressing the research topic on parents’ perceptions of their experiences with early intervention on (a) early child development, (b) parenting, and (c) family dynamics in families with a child at-risk for/diagnosed with developmental disabilities. Participants’ insightful responses gathered through Focus Group 2, or in the concluding question of Interview #4 (for those participants not taking part in Focus Group 2) contributed to the understanding the findings of this study in their reflecting participant parents’ preoccupation with the processes they underwent through from their child’s birth until their transition into school; in reiterating parents’ concerns with regards to the ways systems operate in providing the required health/medical, social and/or educational services; and in highlighting parents’ recommendations for effective service provision, service continuity and coordination among service providers for other parents confronting similar needs with their children. Responses from these participant contributions underwent a process of coding that was similar to the steps followed for responses coded in Focus Group 1 and Interview 1-4 in order to ensure a similar level of organization that would lead to a deeper understanding of the findings. The findings deriving from Focus Group 2 136 discussion substantiated previous findings in this study addressing the specific question: “In what ways do the individual experiences described in a) and b) relate to the current preschool/school demands on these parents?” Indeed, participant parents in Focus Group 2 insisted on the need to address the current uncertainty with regards to service provision during the children’s school years —once the umbrella of the early intervention case management had ceased to operate for families. Father 1, Mother 2, and Mother 3 reiterated the need to maintain programs and services, with easy access to them and with ongoing funding. Parents’ final interventions stressed how the mismatch between the written information and the reality of access to direct health, social and/or educational support services was disconcerting and frustrating for them, and denied their children the support they were entitled to: Father 1: think there are programs between 3-5 years old, like the Supported Child Development Program, but what I don’t understand is what do they have to be in a separate form? Why can’t there be programs on top of another program? Mother 2: Yes, and it is confusing sometimes like I don’t know who is in charge of who, of what... (Brings up an example re looking for childcare and being told that that was not the right place to apply.) [Father 1: (“So you have to go to the [Government Agency]”!) 137 Interviewer: Summarizing, (checking) “Many agencies managing many services instead of one agency — like a centralized entity orienting everyone...” Mother 3: Brings up an example of IDP of BC and [BC Centre for Ability] (OT from both agencies) and working together while they were still with IDPofBC. Father 1 adds, instead, that part of his frustration, [and being a bureaucrat, he adds, he knows how it is]... “One gets tired of being told, you have to work with less...this means writing letters, accessing people... tiring.., frustrating.” Mother 2: Comments on this.frustration and shares an experience with the (current) government about not only not receiving services but services being cut and receiving a letter saying that ‘even fher child is a priority there is no fundingfor that’ Father 1 comments on the problems that Child 1 may develop over time, and, considering that in her case her disability is not overtly visible, but will relate more to mental health issues and with lack of social and emotionalskills... “[My] child has the potential for 180 problems... physical to psychiatric’ ...It’s more difficult when you try to make your case and you get patronized...” Father 1 sees how it is going to be more and more difficult for parents to advocate for support for these children, because of her invisible 138 disabilities... “Like [my] child 1 could walk away with anyone right now.” He refers to first his earlier comment re accessing the school board... Mother 3: That’s when the label comes in; it helps things when you have a label. Parents’ voices echo those of early intervention administrators and service providers that have also been captured through two separate documents, Hebbeler’s report in the U.S. (Hebbeler et a!., 2007) and, more recently, a BC report presented by participants of the BC Child Healthy Alliance for Special Needs (Pivik, 2008), as mentioned in the Discussion chapter of this study. As a final point, the summing theme “The Desire to Share and Contribute” condenses the findings derived from the introductory and closing questions posed in both Focus Group discussions. (As previously mentioned throughout this study, these questions were also posed during the introductory and, respectively, final interviews, for those participants who were not involved in these group discussions). All participant respondents openly expressed their hopes that their voices would be listened, and that the information reported would be shared for other parents of developmentally at-risk children to obtain support services similar to the ones they had received through the IDP since very early on; be empowered to confront complex systems that are alien to their common knowledge (e.g., the medical and hospital systems; the educational, and the social services system); gain knowledge and information about services and programs, so that they avoid experiencing gaps in services during the children’s preschool and school years; for example, the three 139 participant mothers who identified themselves as second English languages speakers made particular reference to all of these issues being particularly relevant for immigrant parents who do not speak English and/or who are not familiar with “the system;” extend the services provided through IDP until school entry, and implement a centralized case managing system that continues working with the families all along, or, as Mother 2 expressed, (quote) “Until they graduate from High-School.” Overview ofFindings from Interviews Interviews revolved around four broad topics deriving from the four specific research questions. As previously described in this chapter, responses were coded utilizing the categories generated in the Focus Group 1 discussion. New categories emerged out of patterns identified in participants’ responses from interviews. For example, as participants discussed their access to programs and services, they specifically elaborated on the ways that these services were delivered to them. Their responses were then coded within the category “Program Model of Service: Description, Compare and Contrast.” A total of 28 categories emerged throughout the 21 semi-structured individual interviews completed. The coding and recoding process followed the steps outlined earlier in this chapter. Participant responses were consistent in both stages of data collection, and across themes 1, 2, 4, 5, 7, 8, 9, 12, and including the background theme “Time, timing and timely.” This consistency confirms the positioning of the present study within the ethnographic tradition of inquiry, in that it captures the meanings of the experiences shared by parents of developmentally at-risk children (Miller et al., 2005; 140 Tedlock, 2000). Given that the interviews conducted in the present study were face- to-face, individual interviews (Berg, 2001), the findings from them are presented separately, in the section presenting the within-participant findings. A brief, concluding summary of this section precedes the description and reporting of the individual accounts of the participants in the present study. Summary ofAcross-Participant Findings The coding of participants’ responses resulted in 13 main themes, highlighting commonalities across the participant families. This framework revealed three levels of impact of the models of early intervention service, according to participant parents’ experiences. These included, their ways of understanding and following up their child’s development and special and/or unique needs; the ways that these models affected either supported or hindered their priorities, hopes and expectations, and values in their parenting of their children; and how the family dynamics, including coping mechanisms, operated throughout the years, in terms of daily logistics, dealing with internal and external stressors; for example, job and financial situations, childcare issues, and confronting obstacles such as lack of funding for resources for their children. The following section includes the individual stories of the six participant families, and examines the themes that emerged through the analysis of each participant’s responses. The information condensed from their individual files provides essential background to participants’ responses, thus complementing each one of their unique stories. 141 Within-Participant Families Findings Overview This section focuses on the findings derived from the individual, face-to-face interviews with participant parents in families 1 through 6. The individual findings include the reports from the participant children’s file reviews, and the participants’ responses from the interviews. The presentation of the findings have been organized as follows: First, an in-depth description of two model cases, Family 3, in Stage One, and Family 5, in Stage Two; and second, the interview summaries for Families 1, 2, and 4, in Stage One; and Family 6, in Stage Two. These are preceded by the participant children’s individual profiles from the reviewed files. Family 3 and Family 5 were selected out of the six cases that exemplify the rich and complex process of data collection and data analyses in this ethnographic multiple case study. All six cases presented a wealth of unique data that would be impossible to include in the body of this manuscript. The rationale behind the selection of Family 3 in Stage One was the following: Mother 3 was one of the two participant mothers participating in Focus Groups 1 and 2 discussions; and, Family 3 case provided information on both children, Child A and Child B. While information from Child A illustrated his path between birth and school entry, Child B’s information covered from birth to preschool. Children and parents’ paths comprised a seven-year period. The rationale behind the selection of Family 5, in Stage Two, is that it included the voices of both Mother and Father 5 through all the data collection activities, in contrast to Mothers 2 and 3; and to Grandmother 6’s interview accounts. Child S’s profile included detailed information that covered the birth and post-natal period, with the complications that 142 originated at the time and the impact on Mother and Father 5’s perceptions and experiences since then and until the present time, when they are completing Child 5’s Kindergarten registration process. The accounts and descriptions presented in this section highlight unique features for every family case. In addition to the themes that had previously emerged as common or shared features across the different families, individual themes within each family’s unique contexts provided the structure for the interpretation of the outcomes of the present study. Nonetheless, it is important to point out the effort invested in reflecting the uniqueness of each family as a “case” in the presentation of the findings. Rather than aiming for homogeneity, every sub-section varies in the selection of the content presented from one family to the next. This variation was important to preserve the integrity of each participant’s account. For example, variations are noticeable for the file review summaries containing information from each participant child (see Appendix I). This is not only attributable to the uniqueness of each child’s profile, but also to the individual characteristics of the consultant’s summaries and comments or suggestions to individual families. Exemplary Case from Stage One ofData Collection Family 3 Background. Family 3’s members include a mother, a father and two children. This mother took part in the focus groups and interviews. As mentioned in Chapter 3 of this study, it was Child B who was first drawn as part of the original sample in the study. Out of the two siblings, only Child B fully met the criteria for recruitment in terms of his obtaining a final diagnosis and special needs designation by the time of 143 discharge from the IDP. Child A met all but one of the recruitment criteria of the study —the one referring to obtaining a final diagnosis by the time of discharge from the IDP --in spite of developmental delays being identified at the time of referral to the program. Child A’s file was only reviewed during Stage Two of data collection to complement and triangulate the data obtained about his developmental history through the interviews. Child A was age 6 years old during Stage One of data collection when the mother participated in the focus groups and interview sessions. At this time, she contributed with dual information for Child A and Child B. Child A was 8 years old at the time his file was reviewed; this corresponded to Stage Two of data collection.9 This section presents the accounts for Child A and Child B under the same script and commentary headings; however, the file reviews for Child A and Child B are presented under separate headings. File Reviews. Child A Background. Child A’s referral to the IDP came at age 2 under the “developmental delays” category, following his younger brother’s referral to the program by a public health nurse (CHN). According to Child A’s file, these parents identified speechllanguage and behaviour (overactive and perseverative play) as concerns. Details about Child A’s referral and intake at 25 months were largely obtained during the file revision session with this mother, where it was learned that the public nurse (community health nurse) had originally referred Child B, Child A’s younger sibling to the IDP consultant under the “at-risk” category. Both parents had The decision to include Child A within the final sample supported by the Researcher’s Thesis Committee, in the months following the proposal’s defense, and having obtained Ethics Consent to re-establish contact with Mother 3. 144 already voiced their concerns for Child A, so they brought Child A along to the first visit originally scheduled exclusively for Child B. Medical History. Child B’s ante-natal history was uneventful with Mother 3 reporting good prenatal health status. Child A was born at 39 weeks, gestational age, two days after his due date, with normal weight (over 3500 g). During the file revision session Mother 3 reported that Child A had suffered fetal distress during labour. Child A was monitored due to his low heart rate during his mother’s contractions during labour. Child A was born by c-section, and did not require additional post-natal attention, while she had to stay in a recovery room during that time. Child A’s file reveals that he received physiotherapy at age 1 year for torticolli at the Provincial Children’s hospital, and was hospitalized with a respiratory infection at age one and a half years. During the file revision session this mother described Child A as “a child susceptible to colds.’°” Additional health and other professional involvement. Other professionals involved with Child A included the following: (a) Audiologist, for a hearing test at age 2 years old. The results reported “grossly normal hearing.” A follow—up test at age three reported “hearing within normal limits” and “fair accuracy of test,” with sound localization only on one side; (b) Speech and Language (SLP) at age 2, confirming language delays and recommending speech therapy and a follow-up assessment at age 10 Child A’s file revision session (April 2008) started with Mother 3 sharing a very recent, quite dramatic experience about the family’s holiday trip back to this mother’s country of origin to both visit her relativ