Open Collections

UBC Theses and Dissertations

UBC Theses Logo

UBC Theses and Dissertations

Parents’perceptions of the interpersonal aspects of care in a pediatric tertiary care neurosciences unit Solomon, Loretta Margaret 1997

Your browser doesn't seem to have a PDF viewer, please download the PDF to view this item.

Item Metadata

Download

Media
831-ubc_1997-0282.pdf [ 4.81MB ]
Metadata
JSON: 831-1.0087675.json
JSON-LD: 831-1.0087675-ld.json
RDF/XML (Pretty): 831-1.0087675-rdf.xml
RDF/JSON: 831-1.0087675-rdf.json
Turtle: 831-1.0087675-turtle.txt
N-Triples: 831-1.0087675-rdf-ntriples.txt
Original Record: 831-1.0087675-source.json
Full Text
831-1.0087675-fulltext.txt
Citation
831-1.0087675.ris

Full Text

PARENTS' PERCEPTIONS O F T H E INTERPERSONAL ASPECTS O F C A R E IN A PEDIATRIC T E R T I A R Y C A R E N E U R O S C I E N C E S UNIT By LORETTA MARGARET SOLOMON B.S.N., The University of British Columbia, 1981 A THESIS S U B M I T T E D IN P A R T I A L F U L F I L L M E N T O F T H E REQUIREMENTS FOR T H E D E G R E E O F M A S T E R O F S C I E N C E IN NURSING in T H E F A C U L T Y O F G R A D U A T E STUDIES (School of Nursing) We accept this thesis as conforming to the required standard  T H E UNIVERSITY O F BRITISH C O L U M B I A April 1997 ©Loretta Margaret Solomon, 1997  In  presenting this  degree at the  thesis  in  partial  fulfilment  of  of  department  requirements  University of. British Columbia; I agree that the  freely available for reference and study. I further copying  the  by  his  or  her  an advanced  Library shall make  it  agree that permission for extensive  this thesis for scholarly purposes may be granted or  for  representatives. '. It  is  by the  understood  that  head of copying  my or  publication of this thesis for financial gain shall not be allowed without my written permission.  Department of The University of British Columbia Vancouver, Canada  Date  DE-6 (2/88)  ii  Abstract Parents' Perceptions of the Interpersonal Aspects of Care in a Pediatric Tertiary Care Neurosciences Unit This exploratory, descriptive study was designed to examine parents' perceptions of the interpersonal aspects of care-giving and to explore differences in parents' perceptions of care-giving according to their children's diagnoses and/or reason for hospitalization. The conceptual framework that guided this research is ajset of priniciples developed by the Institute for Family Centered Care (Hanson, Johnson, Jeppson, Thomas & Hall, 1994) and is based on the belief that the family members are a major source of strength and support for their child, are experts about their child, and want to care for and nurture their child. The five major concepts that form this framework are respect, information sharing, collaboration, family-to-family support and confidence building. For this study, a convenience sample of parents (n=50) was recruited from a 20 bed neurosciences unit in a pediatric tertiary level hospital over an eight week period. Data were collected by means of a revised 56 item, five subscale self-report Measure of the Processes of Care ( M P O C - R ) questionnaire (King, Rosenbaum & K i n g , 1996), and a socio-demographic tool. Data were analyzed using descriptive and parametric statistics. The study's findings indicate that during a particular period of time, parents reflect the views of a relatively satisfied group of consumers who view the interpersonal aspects of care-giving on this particular neurosciences unit positively. The findings reveal no differences in parents' perceptions of the interpersonal aspects of care-giving according to their children's diagnoses and/or reason for hospitalization. Suggestions for enhancing family-centered care include educational strategies, clinical practice changes and administrative support. Future research initiatives are presented.  iii  Table of Contents Abstract  ii  Table of Contents List of Tables  iii v  List of Figures  vi  Acknowledgements  vii  INTRODUCTION  1  CHAPTER 1  4  Background to the Study Statement of the Problem  6  Purpose of the Study  6  Research Questions  6  Definition of Terms  7  Conceptual Framework  CHAPTER 2  CHAPTER 3  CHAPTER 4  8  Assumptions  10  Significance of the Study  11  Review of the Literature  13  Family Centered Care  13  Current Status of Family-Centered Care  17  Family Stress During Hospitalization  20  Parents' Perceptions of Care-Giving  24  Summary of the Literature Review  29  Methodology  32  Research Design  32  Subject Selection and Recruitment  33  Setting  33  Data Collection and Instrumentation  34  Procedures  37  Protection of Human Rights  39  Data Analysis  40  Presentation and Discussion of the Findings  41  Description of the Study Participants  41  M P O C - R Responses  44  Discussion of the Findings  58  Summary  66  iv CHAPTER 5  Summary, Conclusions and Implications  68  Summary of the Study  68  Conclusions  70  Implications for Clinical Practice and Education  71  Implications for Administration  76  Implications for Research  77  References  82  Appendices  87 Appendix A : Measures of the Processes of Care Instrument  88  Appendix B: Parent Information Sheet  98  Appendix C : Consent for Participation  99  Appendix D: Socio-Demographic Sheet  100  Appendix E : Research Approval Letter from B.C.'s Children's Hospital In-House Research Review Committee  101  Appendix F: Research Approval Certificate from the University o f British Columbia Behavioural Screening Committee Research Involving Human Subjects  102  V  List of Tables Table 1. Demographic Characteristics of the Families  42  Table 2. Demographic Characteristics of the Children  43  Table 3. Descriptive Statistics for the M P O C - R Scales  45  Table 4. Item by Item Information: Enabling and Partnership  51  Table 5. Item by Item Information: Providing General Information  52  Table 6. Item by Item Information: Providing Specific Information  53  Table 7. Item by Item Information: Coordinated and Comprehensive Care  54  Table 8. Item by Item Information: Respectful and Supportive Care  55  Table 9. Comparison of Means and Standard Deviations by Admitting Diagnosis  56  Table 10.Comparison of Means and Standard Deviations by Medical Service  57  vi  List of Figures Figure 1. Enabling and Partnership  46  Figure 2. Providing General Information  47  Figure 3. Providing Specific Information  48  Figure 4. Coordinated and Comprehensive Care  49  Figure 5. Respectful and Supportive Care  50  Vll  Acknowledgements  Based on the belief that research involving children with long term health conditions and their parents should be designed and conducted in collaboration with families, this study involved families from its inception. Conducted in partnership with the Partners in Care Committee (Parent Advisory Committee) at British Columbia's Children's Hospital, I wish to acknowledge both the financial support of this committee and the tireless commitment of the parents who guided this study from its beginning. I would like to acknowledge the interdisciplinary health care team in the neurosciences patient based care unit who gave so freely of their time and expertise to make possible our goal of enhancing family centered care on the unit, and ensuring that families remain the true focus of our services. I greatly appreciate the support of my thesis committee, Jinny Hayes (chairperson), Connie Canam, and Betty Davies. Your encouragement, support, guidance and patience have been invaluable. I would like to acknowledge Courtenay, William, Tanner, and Brodie, who have known me throughout their lives as a "student" as well as their grandmother. Many fun weekends together were sacrificed during the process o f completing this thesis -1 love each o f you in a very special and unique way, I thank you for your "forgiveness" o f the time we lost and I promise to make up for it now. Most importantly, I wish to thank the fifty families who cared enough about this project to participate by completing the questionnaire. Without your participation the study would not have happened.  1  INTRODUCTION This exploratory descriptive study was designed to answer the questions: What are parents' perceptions of the interpersonal aspects of care-giving on a pediatric tertiary level neurosciences unit? Are there differences in parents' perceptions o f care-giving according to their children's diagnoses and/or reason for hospitalization? Based on personal experience as a nurse and a patient services director, it is this author's opinion that the interactions between health care providers and parents of children with long term health conditions can impact on the psychosocial well-being of parents and their children. It would therefore seem appropriate for health care professionals to determine how parents themselves perceive these interactions. This would be most consistent with society's emphasis on family-centered services, "in which the care offered to families should be concordant with their needs, wishes, and values" (King et al.,1995, p. 3). This thesis research is the first component of a larger project designed as an interdisciplinary teaching/action intervention for all health care professionals interacting with parents on a tertiary level neurosciences unit. In the larger project a revised version of the Measures of the Processes o f Care ( M P O C - R ) Instrument (Appendix A ) was used to establish parents' perceptions of family-centered care on the unit prior to and after the intervention. During this same time the revised Pediatric Health Care Professionals' Perception and Practices of Family-Centred Care instrument was used to establish health care professionals' perceptions o f family-centered care prior to and after the intervention. This thesis report constitutes the first component o f the study and will explore parents' perceptions o f the interpersonal aspects of care-giving prior to the intervention and will serve  2 to provide baseline data for the larger study. Based on a belief that "research on children with disabilities, and their families, should be designed, conducted, and evaluated in collaboration with parents" (Johnson, Jeppson & Redburn, 1992, p. 24), this study was conducted in collaboration with the hospital's Partners in Care Committee (Parent Advisory Committee). This committee began in 1990 as an informal group of parents and professionals interested in fostering a greater awareness of family-centered care in the hospital. The parents and professionals on the committee are dedicated to promoting excellence in the principles and practices of familycentered care, and will provide resources, guide, consult, and strengthen collaboration between professionals and families. Over the past five to ten years there has been steady and significant progress in implementing family-centered care in hospitals, and the momentum is now a clear and recognizable force in pediatric hospitals (Johnson et al., 1992). The literature, however, indicates that health care professionals may lack knowledge about the elements of familycentered care and how to implement this philosophy (DePompeii, Whitford, & Beam, 1994). Moreover, the ultimate evaluation of family-centered services will be in the perceptions of parents and families themselves. Historically, however, there is little evidence in the literature of how parents experience family-centered practice from their own perspective (McBride, Brotherson, Joanning, Whiddon, & Demmitt, 1993). Health care professionals working in acute care settings have the opportunitities to influence the experience o f children with long term health conditions and their parents by reducing their stress and worry. K i n g et al. (1995) note that attentiveness to parents' concerns  "fits with the societal trend to be more responsive to consumers, and to provide services to meet their needs, as well as the move within health care delivery towards client-centered or family-centered service" (p.v). T o introduce this research study in greater depth, the following chapter presents the background to the problem, the conceptual framework guiding the research, and the significance of the study.  4  CHAPTER 1 Background to the Study A s the patient services director of a pediatric neurosciences patient based care unit ( P B C U ) , this author is aware that although the philosophy of family-centered care seems to be well accepted by the health care professionals, the implementation of the philosophy in practice seems to present a challenge. A t a recent program planning meeting, the health care professionals in the neurosciences P B C U identified the enhancement of family-centered care as a program priority, and requested opportunities to explore and develop practices that would further establish the family as the true focus of their services. The members of this interdisciplinary team are committed to the philosophy of family-centered care, and value family-focused practice (as was evident by their identification of the enhancement of this practice as a program priority), but hold varying opinions about the meaning of family-centered care and how to actually implement, or enrich such practice. There is recognition amongst the team members that there is little knowledge of how parents actually perceive the interpersonal aspects of care for their children and family on the neurosciences unit, or whether parents differ in their perceptions of the interpersonal aspects of care, according to the children's diagnoses and/or reasons for hospitalization. The team members question, for example, whether there are differences in the ways in which they relate interpersonally to children and their parents according to the children's diagnoses. They query whether or not parents' perceptions of the interpersonal aspects of care differ if their children are in hospital for the treatment of psychogenic seizures, nonaccidental brain injury, or treatment of a brain tumour.  5 With this information, the team began to explore, with the hospital's Partners in Care Committee, possible ways to enhance family-centered care. The Partners in Care Committee agreed to provide funds to allow the neurosciences program to evaluate current familycentered services from the parents' perspectives and explore differences in parents' perceptions of care, according to their children's diagnoses or reason for admission to hospital. This thesis research, therefore, was planned to study this portion of the larger project and asked the question: What are parents' perceptions of the interpersonal aspects of caregiving on an tertiary level pediatric neurosciences unit? Are there differences in parents' perceptions of the care according to their children's diagnoses or reason for hospitalization? This interdisciplinary study was grounded on health care professionals' stated value that family-centered services are desirable, and reflect the best practice in providing care to children with long term health conditions and their families (McGonigal & Garland, 1988). It was also motivated by the belief that "the interactions between health care professionals and parents of children with disabilities may contribute positively or negatively to the parents' sense of well-being" (King et al., 1995, p.v) and to their ability to cope with their children's condition, and to their children's sense of well-being. The M P O C questionnaire was based on and reflects the beliefs, values, needs and wants expressed by parents of children with long term health conditions who were initially involved in the development of the tool (King, et al., 1995). It is built on the interpersonal aspects of care identified by parents as important and the five subscales reflect health care professionals' behaviours seen as valuable by families. The authors of M P O C note that " M P O C ' s development and content therefore closely match the current interest in measuring  6 the extent to which services are client-focused or reflect a family-centered perspective" (King et al., 1995 p. v).  Statement of the Problem The general problems that this study addresses are: 1) the lack of knowledge regarding parents' perceptions of the interpersonal aspects of care that health care professionals provide to children with long term health conditions and their families in a pediatric tertiary level neurosciences unit; 2) the extent to which the services that are provided meet the needs of the families, and 3) whether parents' perceptions of the care provided to their child and family differ according to their children's diagnoses or reason for hospitalization.  Purpose of the Study The purpose of the study is to evaluate current family-centered care practices within an interdisciplinary tertiary level pediatric neurosciences unit. This will be accomplished by exploring parents' perceptions of the interpersonal aspects of care, and by determining differences in parents' perceptions o f care-giving according to their children's diagnoses, and/or reason for hospitalization. Hence, the study will address the following research questions.  Research Questions 1.  What are parents' perceptions of the interpersonal aspects of care-giving on a tertiary level pediatric neurosciences unit?  2.  Are there differences in parents' perceptions of the interpersonal aspects of caregiving according to their child's diagnoses, or reason for hospital admission?  7  Definition of Terms The following terms are defined in order to clarify their use in this study:  Family-centered care "is based on the assumption that the family is a child's primary source of strength and support. Family-centered providers recognize that parents and other close family members are experts on their own children and hold essential information that can enhance children's health care" (Hanson, et al., 1994, p. 9). In this model, the needs and desires of the family guide the service delivery model (McBride et al., 1993).  Family allied care: Families are viewed as agents of the professionals who in turn decide interventions that would benefit the child. The family is enlisted to carry out the intervention that the professionals deem as important (Dunst, Johanson, Trivette, & Hornby, 1991).  Interpersonal aspects of care-giving: For the purposes of this study, measuring the interpersonal aspects of care-giving are considered synonymous with measuring familycentered care. The M P O C - R instrument captures parents' perceptions ofthe care-giving offered to the child and family, and represents the essential features of family-centered care (King etal., 1995).  Long term health condition: Thomas' (1987) working definition of a pediatric chronic condition will be used for this study: an anatomical or physiological impairment that impedes a child's ability to fully function in the environment. A chronic condition is "characterized by relatively stable periods that may be interrupted by acute episodes requiring hospitalization or medical attention. The individual's prognosis varies between a normal lifespan and an unpredictable early death. Chronic conditions are rarely cured, but are managed by the individual and family effort and diligence" (p. 5).  8 Parent: A n y adult who assumes the role of the central caretaker for the child. This individual may be the child's natural mother or father, adoptive, step or foster parent, or grandparent.  Professional centered model of care: The needs of the family are identified by the professionals , who in turn are seen as the experts (Dunst, et al., 1991).  Conceptual Framework The framework of concepts or principles which guided the development of this study was developed by the Institute for Family-Centered Care in Bethesda, Maryland. Described by Hanson, Johnson, Jeppson, Thomas and Hall (1994), this framework is based on a fundamental philosophy and belief that the family is the essential and most important source of strength and support for a child, that parents are deeply caring and want to nurture their children, and are experts on their own children (Hanson et al., 1994). It is "care that acknowledges and respects the pivotal role that families play in the care of their children. It is a philosophy that strives to support families in their care-giving roles" (Johnson, 1990, p. 237). Additionally, "the perspectives of families who have had frequent or extended contact with a hospital provide important and valid information upon which to base programmatic and design decisions" (Hanson et al., 1994), and ways must be found to ensure that parents' perspectives are heard. Budreau and Chase (1994) note that "the philosophy and principles of family-centered care can provide a framework for health care professionals to both help families cope with the stress of hospitalization and support them in their care-giving role" (p. 604). Ahmann (1994b) suggests that "the philosophy of family-centered care can provide a firm foundation  in striving toward excellence in the practice of caring for children and families" (p.l 13). These authors describe five key concepts which serve as guiding principles for family centered care: respect, information sharing, collaboration, family-to-family support, and confidence building. These concepts are summarized as follows:  Respect: Parents' values, beliefs, and cultural backgrounds need to be respected and understood. Parents love their children and want to provide them with what is best and families choices need to be honoured and valued.  Information Sharing: In order to make appropriate decisions and take part in their children's care, families need unbiased, accurate and complete information. Learning styles vary within families, and family members may have specific preferences for when and how they receive information.  Collaboration: Professionals and family members have special knowledge and resources that impact on children's care. Parents are in a position to best know the strengths and needs of their child and their family. Children can be provided with the best possible care when professionals and families work together collaboratively to provide services to children. Hospital policies and programs can be planned best when families and health care professionals collaborate together.  Family-to-family support: When families have the opportunity to support other families in similar situations, their ability to cope may be enhanced as they find friendship, comfort and strength in one another. Families also engage more effectively in health care when they are provided with encouragement and support.  Confidence building: Family centered programs and services provide opportunities for  10 families to gain confidence and increase their skills. By doing so, families provide more effective care for their children. According to Hanson et al. (1994), if health care professionals are to improve the care provided to children and families they must see families as integral members of the health care team, include families' strengths and resources into the plan of care and respect their choices. Family-centered care "offers effective approaches to promoting health and wellbeing, preventing disease, and treating acute illnesses and chronic diseases" (Hanson et al., 1994). It is acknowledged that these concepts, or guiding principles have yet to be empirically validated and little research exists to support the assumed efficacy of familycentered care, yet they arise from many observations with hundreds of parents in clinical practice over many years. These principles reflect a general consensus of values, beliefs and philosophies of family-centered care, were developed by parents and professionals, provide a clear framework for practice and "are therefore worthy of our aspiration and study" (McBride etal., 1993, p. 428). Assumptions  The assumptions that guided this study are as follows: 1.  The parent who completes the MPOC-R instrument is the ideal informant for the family. When an individual is the basis for family research, "there is an assumption that the individual's viewpoint is a valid measure of the family or family phenomenon under investigation" (Lynn, 1995). Lynn (1995) notes that restricting family data to the viewpoint of one family member has the potential to present a biased view of the  11 family since an inaccurate interpretation of the family situation may result, but concludes that it is acceptable to use one family member if that member is considered an ideal informant. 2.  There is a relationship between how care is delivered, and the psychosocial wellbeing of children with long term health care conditions, and their families. How care and interpersonal interactions are offered to children with long term health conditions and their families "may contribute powerfully (in either a positive or a negative way) to parental well-being" (King et al., 1995). Significance of the Study  This study is of primary interest to the interdisciplinary team in the specific neurosciences unit concerned. It provides a useful indication of how parents of children with long term health conditions perceive the care and services offered by the neurosciences team members, and whether or not parents perceive the care differently according to their children's diagnosis and/or reason for hospitalization. In addition, thefindingsof this study may identify aspects of care requiring improvement and may provide direction for planning continuing education sessions related to family-centered care and future allocation of resources. Thefindingsmay also assist the neurosciences PBCU in setting a clear vision and incorporating family-centered values into the goals, policies and procedures of the unit. It may assist in the identification of family-centered practices already in process, identify priorities for change, and begin a process of enhancing family-centered practices in the PBCU. The preliminaryfindingsfrom this study are an integral part of the overall study  12 exploring parents' and health care professionals' perceptions of care-giving before and after a staff education/action intervention, conducted on the same unit and by the same research team. The findings will serve as baseline data for the larger study and will be compared statistically to data that will be gathered following the intervention. The literature clearly supports the importance of responding to the concerns and needs o f families and providing services to meet these needs (King et al., 1995). The number of children with complex health conditions is increasing at a time when health care resources are shrinking. The literature supports that family centered care "offers effective approaches to promoting health care and well-being, preventing diseases and treating acute illnesses and chronic condition" (Hanson et al., 1994). The importance of conducting a study of this nature is supported and encouraged by Horner, Rawlins, and Giles( 1996) who note that "the best way to find out about the special concerns of families with a chronically ill or disabled child is to ask parents themselves" (p. 40). Jeppson and Thomas (1995) suggest that: The effectiveness and quality of programs for children and families can best be measured by how well those programs actually meet family and community needs. What better way to initially define community needs, develop a responsive program, prepare personnel to provide appropriate, supportive services, and evaluate outcomes and satisfaction than in partnership with those being or have been served by the program? (p.8)  who are  13  CHAPTER 2 Review of the Literature The literature reviewed is that which is pertinent to this study's research problem. The intent of the literature review is to establish a context for what is understood to date about parents' perceptions of the interpersonal aspects of care provided by health care professionals in a tertiary setting, and to locate this study within the context o f related professional literature. The review includes both theoretical and research-based publications in order to establish a background of information about the specific research question. The first subject area includes family-centered care literature, notably family-centered practices and underlying principles. Second is literature discussing the current status of family-centered care, and third, the general impact of a child's illness and hospitalization on the child and family. The final area, directly related to the research question, explores research studies that attempt to address parents' perceptions of the interpersonal aspects of care-giving.  Family Centered Care Family-centered care has come to be considered the optimal form of practice in health care, mental health care, and special education (Johnson et al., 1992) and is recognized as the best practice in the delivery of services and care to children and their families (McGonigal & Garland, 1988). It is a system-wide approach to pediatric care based on the assumption that the primary source of strength and support for a child is the family (Hanson et al., 1994). The goal of this model of providing care is to fully involve families in the children's care in a respectful and supportive manner. The key elements of family-centered care include:  14 recognizing that the family is the constant in the child's life; encouraging family/professional collaboration; honouring the diversity of families; recognizing strengths; sharing information, family-to-family support; understanding the developmental needs of children; supporting families emotionally; and designing accessible health care systems (Johnson et al., 1992). These guiding principles of family-centered care can provide the foundation for devising strategies for successful implementation of the philosophy, and provide the basis of the delivery of care for children and families in health care facilities. Although the concept of family-centered care has been around for many years, it was first introduced in a formal sense in 1987 (Ahmann, 1994a). The Division of Maternal and Child Health ( D M C H ) recognized the essential role of the family in the health of children, and Dr. Everett K o o p , Surgeon General of the United States at the time, proclaimed the essential role of the family in a report on special needs children (Hostler, 1994). The D M C H subsequently funded the Association for the Care of Children's Health ( A C C H ) to develop and implement a nationwide program to enhance the implementation of family-centered practice for children with special needs (Hostler, 1994). In 1987, A C C H defined familycentered care and described key components of the philosophy (Shelton, Jeppson & Johnson, 1987). Family-centered care represents a dramatic change in the way health care services are delivered to children with special needs and their families, and requires a revision of our patterns of thought and action in relationship to families (Ahmann, 1994b). This concept places the family, rather than the hospital and staff, at the centre of services (Hostler, 1994). Family-centered care is a philosophy of care "based on the belief that all families are deeply  15 caring and want to nurture their children" (Edelman, 1991, p. 1). It acknowledges that families are diverse in terms of structure, background, goals and dreams, strategies and actions, and in need of family support, service and information. The need for family-centered care stems from the recognition that there is a wide gap between parents' own perceived needs and parents' needs as perceived and addressed by the health care team (Ahmann, 1994b). The primary goal of family-centered care is the inclusion of families as full partners in children's health care (Hanson et al.,1994), and this inclusion means involving families in decision-making, offering families support to meet their own needs, information, and inclusion on hospital committees. Family-centered care requires that the health care team build on families' strengths, respect their different methods of coping, and respond to their individual needs (Ahmann, 1994a). Barriers to family-centered care include: the high technology nature of hospitals; increases in the acuity of illness; staff shortages; professional attitudes; the organizational climate; methods of care delivery that do not support continuity of care and poor communication patterns (Rushton, 1990). The benefits of family-centered care include: greater feelings of confidence and competence for family members in caring for their children; a decrease in the dependence of families on professional caregivers; a decrease in the cost of care; greater job satisfaction for health care professionals; and empowerment for parent and health care professionals to develop new skills and expertise (Johnson et al., 1992). Family-centered care empowers parents so that they feel in control of their lives, as opposed to feeling controlled by the illness or disability (Diamond, 1994), and it includes  16 advocacy, education, and support. The key elements of family-centered care are based on principles designed to support self-determination, control, self-efficacy, and decision-making abilities. These qualities indicate an enablement rather than a medical model (Dunst, Trivette, Davis, & Corwell, 1988). Children and families need an advocate to ensure the whole family is considered when decisions are being made. Education is an ongoing process, and must be adapted according to the parents' level of understanding and the child's developmental level. Education focuses on the diagnosis, the plan of care, and how the illness or disability will impact on their daily lives (Tichy, Braam, Mayer, & Rattan, 1988). Support for families includes practical, emotional and social support. Practical support may involve education, information and training in dealing with stressful situations. Emotional support includes reassurance during stressful periods and working through subsequent feelings. Social support may involve the creation of a support network or providing appropriate role models. The more comfortable and knowledgeable parents feel, the better their adjustment to their child's situation (Hall, 1987). Family-centered practice requires health care professionals to shift from a "professionally-centred view of health care to a collaborative model that recognizes families as central in a child's life, and their values and priorities as central in the plan of care (Ahmann, 1994b, p.l 13). Family-centered practice requires that the health care team builds on family strengths, respect their different methods of coping, and respond to individual needs (Ahmann, 1994a; Hanson et al., 1994; Shelton, et al., 1987; Jeppson & Thomas, 1995). McBride and her colleagues (1993) note that family-centered practices have been influenced by efficacy research regarding appropriate approaches to working with families.  17 Current Status of Family-Centered Care Johnson et al. (1992) note that steady and significant progress has been made during the past five to ten years in implementing family-centered care in hospitals, and the momentum is now a clear and recognizable force in pediatric hospitals. For example, In 1954, only 32 percent of hospitals with pediatric beds allowed daily visiting. By 1988, 98 percent allowed daily visiting, and 50 percent had overnight accommodation for families (Johnson, 1990). Despite this progress, the actual implementation of family-centered care has lagged significantly behind the conceptual acceptance of the philosophy. Letourneau and Elliot (1996) note that although some research "suggests the value of incorporating family centered care into the care of children with special health care needs, the practice of family-centered care by health care professionals has been inconsistent" (p. 161). This delay has been attributed to the need for a dramatic change in our patterns of thought and action in relationship to families (Ahmann, 1994b). A revolutionary change in perspective will be required to shift from an emphasis on parent involvement to family support. "Neither parents nor professionals are fully prepared for the new roles they must play in developing programs that are truly family-centered" (Johnson et al., 1992, p 2). Although there is an awareness of the importance and value of providing family-centered services, health care professionals find it difficult to develop plans of care for the family (DePompeii, Whitford, & Beam, 1994). These researchers postulate that the difficulties may have emerged due to a lack of understanding about the needs of families, and a lack of knowledge concerning the elements of family-centered care, and how  18 to implement them. Research indicates that "even among nurses, family-centered care principles are poorly understood or implemented...the attitude throughout the professional community is predominately prescriptive rather than collaborative" (Hostler, 1994, p. 175). Consistent with other researchers, Hostler (1994) notes that professionals find it difficult to collaborate with families and this may be due to resistance to the principles of family-centered care, but is more often the result of the real challenge of actualizing the principles in concrete terms in complex patient care situations. It may also be due to an extensive history of the use of the medical model of care in the hospital setting. Johnson et al. (1992) note that "providing state-of-the-art child health care in ways that fully integrate family-centered principles is enormously challenging" (p.3). Providing health care for children is expensive, requires more staff and space than adult care, and funding is decreasing. In times of fiscal restraint, facilities may question the feasibility and appropriateness of providing family-centered care (Johnson et al., 1992). Professional perceptions of the current status of family involvement in early intervention programs note that efforts to document progress toward achieving familycentered practices have historically focused on the concerns of health care professionals, not families (Bailey, Buyesse, Edmondson, & Smith, 1992). Family-centered practices have not been well established in most early intervention programs and a child-centered model of service delivery with minimal family involvement has tended to be the normal (Mahoney & O'Sullivan, 1990; Bailey, Palisha, & Simeonson, 1991). Johnson (1990) discusses the possibilities for full implementation of family-centered  19 services by the year 2000. The Association for the Care of Children's Health has articulated a vision which includes family-centered, psychologically sound, developmentally supportive care as the standard of care for children and families. This vision states that there will be no financial or geographical barriers to care, and families will have real options in selecting health care services. Families will have choices about receiving care in a variety of locations. A s well, families will have real options in selecting health care services; will have choices about receiving care in a variety of locations; care will be coordinated; parents will be included as an integral part of the team; and support for families, as well as education, will be readily available (Johnson, 1990). Family-centered care is now considered best practice, and in the United States there is strong legislative direction to the family-centered care movement (Johnson et a l , 1992). Published literature regarding the status of family-centered care in Canada could not . be found. However, an indication of progress may be the increasing number of conferences, presentations, workshops, parent advisory councils and family-centered care projects that have and are being developed. Another indication of progress is the development of the paid parent consultant role in several agencies in British Columbia. In addition, numerous hospitals across Canada are now engaging in a process of enhancing family-centered care by examining administrative policies and procedures and developing programmatic initiatives designed to create an environment conducive to family-centered care. These innovative initiatives in hospitals reflects the dedication of Canadians to continue their efforts to enhance services to families. This current study is one more example of many that demonstrate a determination to enhance family-centered care in Canada.  20  Family Stress During Hospitalization The literature supports that hospitalization of a child is a major family event (Knafl, 1985) that impacts on all family members—before, during, and after the event (Knafl, Cavallari, & Dixon, 1988). The family is the most important social context in which illness occurs and resolves (Horner, Rawlins & Sites, 1987), and during a child's illness and hospitalization the family itself becomes the unit of care (Burns, 1984). K n o x and Hayes (1983) studied sources of parental stress during the hospitalization of a child and parental perception of this stress. Conducted in two phases, the first group consisted of 14 parents of children hospitalized with long-term disabilities and the second group consisted of 27 parents whose children were hospitalized with cancer. These authors found that parents had difficulty adjusting to their child's diagnosis due to the uncertainty o f their child's future. A significant source of stress for families during their child's hospitalization was the lack o f clarity between the parents' expectations about how to parent their children in hospital, and the expectation of the health care providers. These authors suggest that parents require support, information, and time to express their concerns. Understanding parents' perspectives, and developing direct and open communication patterns develops trust, which is important to the relationship between families and health care professionals. Understanding parents' perspectives is an essential and necessary aspect of effective health care relationships (Knox & Hayes, 1983, Hayes & Knox, 1984). The findings from this study support the need for further research in this area utilizing a tool that measures family-centered care. Knafl (1985) reports findings based on a descriptive study of 62 families experiencing  21 short-term hospitalization of a school-age child for a non-life-threatening reason. She looked at how parents define, manage, and view the meaning o f the hospitalization on family life, and found that parents expressed differing views. Parents expressed a common belief that the child's hospitalization is a major family event, and that altering their normal routines should occur so that one or both parents could remain with the hospitalized child. She reports that siblings either managed the home in the parents absence, or the parents made special attempts to minimize the disruption to the siblings. Limitations to the generalizability of the findings result from the fact that the study was limited to families who had children admitted for short term, non life- threatening hospitalization, to children who had no physical or mental impairments and only two parent families were eligible to participate in the study. Graves and Ware (1990) compared 36 mothers', 14 fathers', 27 nurses', and 23 physicians' reactions to stressful stimuli when children were hospitalized. These researchers found several differences between the perceptions of parental stress by mothers, fathers, physicians, and nurses. Physicians failed to predict maternal stress ratings, and nurses did not accurately predict fathers' stress ratings. These findings are similar to Hayes and K n o x (1984), who found that health care professionals were not always aware o f the intensity and variety of stress experienced by parents. A limitation to the Graves and Ware (1990) study was the use o f a tool with limited reliability and validity and the use o f a sample of convenience. The findings, however, do support the need for further investigation o f parents' perceptions of the interpersonal aspects of care-giving. Ogden Burke, Costello and Handley-Derry (1989) employed a quasi-experimental comparison group design to study 60 families and looked at the degree and nature o f parental  22 stress during repeated hospitalizations of multi-handicapped children. These researchers found differences in the degree and nature of parental stress in families with a child with a disability, and families with non-disabled children. For families with a child with a disability, hospitalization was more frequent and more stressful for the mothers. Knowing that families o f children with disabilities find hospitalization more stressful reinforces the need to explore further how parents o f children with long term health conditions perceive the interpersonal aspects of care-giving. If health care providers are to reduce this stress they must first become aware of how parents perceive care-giving. Generalization o f the findings from this study are limited due to the use of a comparison rather than a matched group and the use o f a sample of convenience. Knafl, Cavallari, and Dixon (1988) used qualitative methods to study 62 families whose children had been hospitalized and found that all family members are affected to varying degrees. Ninety-four percent of families viewed their hospitalized children as the focus o f attention and neglected their home and work responsibilities. Parents consistently described the hospitalization experience as negative or highly disruptive o f family life. These results are consistent with Knafl's (1985) findings that hospitalization was a major family event which altered normal family routines. Robinson (1987) interviewed nine parents of children repeatedly hospitalized with chronic illness and concluded that barriers to the implementation o f family-centered care resulted from differences in perspectives between parents and health care providers. Differing perspectives about "orientation to sickness, therapeutic goals, expectations about hospitalization, and perspectives about family involvement" (Robinson, 1987, p. 185) resulted  23 in significant challenges for families. These findings are similar to those of K n o x and Hayes (1983) who also found differing perspectives between health care professionals and parents. Although this qualitative study has a small sample size and is not generalizable, the findings support the need for further research exploring parents' perceptions o f care-giving during hospitalization. Brown and Ritchie (1989) interviewed 25 nurses in a descriptive study looking at nurses behaviours in their relationships with parents. These authors found that nurses often experienced problems in caring for parents, particularly when the relationship was adversarial. Factors that led to relationship difficulties were "the nurses' level of interpersonal skills, ability to deal with anger, understanding of the grieving process, and issues o f control" (p. 93). These authors also found relationship difficulties between parents and nurses resulted in differences in the quality of care provided to parents. The recruitment of the study nurses on a volunteer basis may have resulted in problems o f bias thereby limiting the generalizability of the findings from this research. Families of hospitalized children are faced with numerous stresses and it "may be possible that aspects o f the organization and content of health services might contribute to the development or prevention o f these emotional problems", say Baine, Rosenbaum, & K i n g (1995). These researchers suggest that there is limited use in focusing on characteristics in the child and family that cannot be changed, and suggest one approach to the prevention of psychosocial problems for families may be to "define and understand the content and style o f care-giving as provided by health care professionals, as an alternative strategy for determining how to alleviate or prevent the possible psychosocial difficulties" (King et al.,  24 1995, p. ). Ultimately, it is the perceptions of family members that must be addressed in order to facilitate effective coping (Watterson Wells, DeBoard-Burns, Cook, & Mitchell, 1994). In summary, the literature clearly supports that hospitalization o f a child is a major family event resulting in significant stress and disruption. A family's reaction to a child's illness may vary in response to the degree and nature of the stress precipitated by the event(s) and health care professionals may not always be aware of the intensity and variety of the resulting stress. It is also clear from the literature that families of children with long term health conditions experience more frequent hospitalization and the experience tends to be more stressful. During hospitalization, health care professionals have opportunities to alleviate or prevent some stress for families and provide needed support through the content and style of their care-giving. This reinforces the need for further research in the care of children with long term health conditions and their families by exploring parents' perceptions of the interpersonal aspects of care-giving so that more appropriate care measures can be incorporated into care.  Parents' Perceptions of Care-Giving The following is a summary of studies found in the literature that relate specifically to parents' perceptions of the services/care provided to their child with a long term health condition and the family. Krahn, Eisert, and Fifield (1990) surveyed 295 parents of children with special health needs across two service delivery sites to identify parental perceptions of the quality of services delivered within an interdisciplinary setting for children with special needs. They found that convenience and provider behaviour and relationships with staff are important  25 components o f satisfaction with health care. They state the need to extend this research to interdisciplinary programs serving children with special health care needs. Most research studies have been conducted in single discipline settings and a strength o f this study lies in the fact that it was conducted in an interdisciplinary setting. These authors clearly support the need for further research in an interdisciplinary setting which explores parents' perceptions o f care-giving in an interdisciplinary neurosciences unit. The external validity o f the findings are limited due to the use of untested instruments. Cadman, Goldsmith, and Bashim (1994) report findings based on a study comparing values placed on functions relevant to the well-being of young developmentally handicapped children by parents and health care providers. Subjects were asked to read descriptions of the functional abilities and limitations o f several children, and to quantify the value they placed on each child's over-all well-being. They state that a dilemma arises for the health care provider when trying to make decisions on behalf of children and families because the value and preferences o f these individuals are unknown. They support incorporating the values of parents into decision-making in the field of development disabilities. Sexton, Burrell, and Thompson (1992) surveyed 53 mothers of children with disabilities to identify the functional needs o f families of young children with developmental disabilities. They state that the families of young children with disabilities have unique and individual needs and it is critical that needs be assessed for every parent. These researchers identified six needs: more information about the child's condition, more information about how to teach the child, services currently needed, family-to-family support; more time for self, and financial assistance. The findings from this study are consistent with family-centered  26 care literature that also identify these same family needs (Hanson, et al., 1994, Jeppson & Thomas, 1995, Johnson et al., 1992). These findings would also support the need to conduct further research using a tool that is developed by parents and based on families' needs. Unfortunately, the study's generalizability is limited due to the fact that only mothers were recruited for the study and the mothers do not necessarily represent the entire family. Additionally, these mothers completed a questionnaire designed to identify the needs of the entire family. L y n n (1995) notes that restricting family data to the view point of one family member has the potential to present a biased view of the family. Bailey, Buysse, Smith, and Elam (1992) report a two-treatment group comparison study to look at the perceptions and effects of parent participation in a workshop designed to help professionals working with children with disabilities and their families. They found that professionals who experienced parental presence at the workshop were positive about the experience. Professionals who attended the workshop without parents strongly felt the need for parent participation in planning designed to enhance family-centered practices and in looking at the need to change practices in accordance with family values and priorities. McBride, Brotherson, Joanning, Whiddon, and Demmitt (1993), in a descriptive study involving 15 families, investigated the meaning of family-centered care and the extent to which it is being implemented in outpatient early intervention programs. They found three major themes that emerged when they looked at the family as the focus of interventions: attention to family concerns beyond the needs of the child; respect for the values and routines of the family; and the involvement of all family members other than the mother. They conclude that the findings provide an understanding of the movement towards family-  27 centered practices, and a shift from family-allied practices (families are enlisted to carry out interventions that health care professionals determine to be necessary) to family-focused services (outcomes and services are limited to family needs only as they impact on the child), and demonstrate a shift from child to family-centered practice. Rosenbaum, K i n g , and Cadman (1992) present a descriptive study involving 280 families aimed at identifying aspects of care-giving and determining the importance o f these aspects by having parents rate and rank care components for children with developmental disabilities and their families. A m o n g the seven highest-ranking aspects o f care were: parent involvement, education/information, treatment/care, accessible/available care, and coordination. Parents ranked continuity and family-centred as being particularly important to them. In view o f the fact that parents ranked family-centered care as being particularly important to them, an area o f further research exploring parents' perceptions of familycentredness on an acute tertiary level neurosciences unit seems appropriate. Knafl, Breitmayer, Gallo, and Zoeller (1992) used qualitative methods to explore the views o f 63 families of children with disabilities looking at the behaviours o f health care professionals that promote and sustain a positive working relationship. Consistent with previous literature, families identified interactional, rather than technical competencies, as qualities they valued in health care professionals. Parents preferred health care professionals who supported parents' confidence and care-giving abilities. These findings are consistent with Knox and Hayes (1983) who suggest that parents need support, information and understanding from service providers. Particularly, they suggest that developing direct and open communication is important to the relationship between families and service providers.  28 These findings support the need for further research exploring the interpersonal aspects of care-giving. Thorne and Robinson (1988) conducted a qualitative study involving 77 individuals who were involved with chronic illness and explored perceptions of their relationship with health care professionals. Similar to the finding of other studies (Knox & Hayes, 1983; Knafl et al., 1992) these authors concluded that shared trust is essential for the development o f a satisfying relationship between health care professionals and patients, particularly when chronic illness is involved. It is interesting to note that the interactional aspects o f care are more important to families than technical competencies. These findings reinforce the need for further research exploring parents' perceptions of the interpersonal aspects of care-giving in a tertiary level pediatric unit. Able-Boonek, Dokecki, and Shelton Smith (1989) interviewed 30 health care providers and 27 parents to investigate communicative interactions when a seriously ill infant is treated in an intensive care nursery. These researchers identified three major issues for parents: the need to be informed about their child's condition in understandable terms; the need to be able to participate fully and meaningfully in treatment decisions; and, the need to be supported during the hospitalization. This findings from this study are consistent with Sexton et al. 1992 and McBride et al. 1993 who identified similar issues for parents. Finally, Baine, Rosenbaum, and K i n g (1995) used a mail questionnaire to health care professionals and parents of children with disabilities to identify components of care-giving that are important by ranking them. Consistent with the findings o f other researchers (AbleBoonek et al., 1989, Sexton et al., 1992) the components of care ranked most highly were  29 diagnosis, treatment, education/information, continuity/consistency of care, accessibility and parental involvement. These findings support further the need for an investigation which explores parents' perceptions of the interpersonal aspects of care-giving utilizing an instrument that measures family-centredness. In summary, the literature supports that relationships with staff are important components of parental satisfaction with health care (Krahn, Eisert, & Fifield, 1990). Knafl et al. (1992) conclude that interactional skills rather than technical competencies are qualities that families value in health care professionals. In addition, the literature supports that parents rank family-centered care as being particularly important to them (Rosenbaum et al., 1992). Several studies support that the aspects of care-giving that are the most important to families are: parent involvement, information about their child's condition, the need to be informed, continuity of care, the need to participate fully, and the need to be supported during the hospitalization (Bain et al., 1995; Able-Boonek et al., 1989). McBride et al. (1993) suggest that "the ultimate evaluation of implementation of family-centered services will lie in the perceptions of parents and families" (p. 417). The findings from these studies support the need for further investigation of parent's perceptions of the interpersonal aspects of caregiving using a tool developed to measure family-centeredness.  Summary of the Literature Review This chapter has reviewed selected literature related to four major subject areas in order to establish what is known about parents' perceptions of the interpersonal aspects of care-giving in a tertiary level neurosciences unit. First, the literature clearly supports that family-centered care is indeed considered to be the optimal form of practice in most settings  30 (Johnson et al., 1992), and is recognized as the best practice in the delivery of services to children with long term health conditions and their families (McGonigal & Garland, 1988). Families have clearly identified family-centered care as being particularly important to them. The literature review suggests that care for children with long term health conditions and their families can improve when family-centered practices are implemented in agencies and communities. Since this is considered the preferable way to provide services to these children and families, research is needed to explore further how well this model of care is being provided, and seek ways to enhance family-centered care. Secondly, although several studies explored parents' satisfaction with care, these studies were conducted from the perspective of service providers rather than the perspective of families. Although the literature is clear that families prefer family-centered practices, "little evaluation of how families themselves are experiencing family-centered practices has been conducted" (McBride et al., 1993, p. 417). This author was unable to locate a study which specifically investigates parent's perceptions of the interpersonal aspects of care-giving from a parent perspective. Most studies have been conducted in child development or pediatric rehabilitation centres rather than tertiary level units. In addition, the published research has been carried out from the perspective of single disciplines rather than an interdisciplinary setting. Krahn et al. (1990) conclude that there is a need to extend research to interdisciplinary programs serving children with long term health conditions. Robinson (1987) notes that "health care professionals must attend to families' perceptions in order to facilitate effective long-term coping at both the family and the child  31 level" (p. 182). This opinion is supported by K i n g et al., (1995) who note that listening to the concerns of families is consistent with a societal move to be more responsive in how we provide services to meet their needs. The research-based knowledge is inadequate, and provides little information about parents' perceptions of care-giving in a tertiary care unit, and no information on whether or not parents perceive the care differently, according to their children's diagnoses or reason for admission. Since the ultimate evaluation of the implementation of family-centered care rests with the parents, a collaborative study looking at parents' perceptions of the interpersonal aspects of care-giving on a tertiary level unit seems appropriate. McBride and her colleagues (1993) note that in some situations "values must drive our research and practice" (p.428).  32  CHAPTER 3 Methodology This chapter will describe the research design, subject selection and setting, and the data collection and procedures used in this study. The protection of human rights is described, followed by a description of the methods of data analysis.  Research Design This cross sectional descriptive study used a self-administered parent questionnaire to obtain data regarding parents' perceptions of the interpersonal aspects of care-giving on a pediatric tertiary level neurosciences unit. The purpose of descriptive research is "to observe, describe, and document aspects of a situation as it naturally occurs...the intent of such research is not to explain or to understand the underlying causes of the variables of interest" (Polit & Hungler, 1991, p. 175). Although it is acknowledged that perceptions may be best determined through an interview process (Polit & Hungler 1991), this study utilized a self-report questionnaire design in response to the practical considerations of limited time and funding. The cost of administering a questionnaire was likely be minimal as compared to an interview process. This tool was also chosen as a measure that parents can complete on their own, thereby ensuring confidentiality and avoiding biases that may be introduced in an interview process (King et al., 1995). Johnson et al. (1992) suggest that questionnaires are an appropriate method of evaluating whether a facility provides family-centered care, is meeting the emotional and psychosocial needs of children with long term health conditions and their families, and is addressing the developmental needs of children.  33 Following a revision of the Measures of the Processes of Care 56 questionnaire by selected unit personnel, two researchers from the study team, and the McMaster research team (Dr. Peter Rosenbaum and M s Suzanne King) a validity check was conducted prior to its use in the study. T o do this, the instrument was completed by six parents whose children were inpatients on a neurosciences unit as well as six health care professionals.  Subject Selection and Recruitment Approximately 600 children each year, or about 50 children a month, are admitted to the neurosciences inpatient unit. For the purposes o f this study, a convenience sample (n=50) was selected of all parents whose children were inpatients on the neurosciences unit during the months of October and November 1996, and who filled the criteria for inclusion in the study, that is, they: •  were able to read and write English  •  had children admitted to the unit with a neurological or neurosurgical condition, and were therefore managed by the same interdisciplinary health care team.  Parents were excluded from the study if: •  they were in crisis (as established through collaboration between staff nurses and the patient services director, a selection criterion required by nursing leaders in the program concerned).  •  they refused to participate.  •  they had a known diagnosis of mental illness.  Setting The study occurred in the neurosciences inpatient unit of a large metropolitan  34 pediatric hospital in western Canada. This neurosciences patient based care unit provides tertiary care for children and youth with long term health conditions. The program consists of children's neurosurgery, neurology and spina bifida services. A 14 bed inpatient unit provides care for children who are admitted with acute neurological and/or neurosurgical problems, and the diagnoses include, for example, brain tumours, hydrocephalus, strokes, seizure disorders, spina bifida, and a growing number of children who are direct or indirect victims of violence.  Data Collection and Instrumentation Data included responses to the Measure of the Processes of Care Instrument-Revised, which will be referred to throughout this report as the M P O C - R . This instrument was selected for the study as it was designed to measure parents' perceptions of the interpersonal aspects of care-giving, is based on parents' experiences, and represents the essential features of family-centeredness (King et al., 1995). This tool was also selected because it was developed for use in settings with children who have neurodevelopmental problems and this is similar to the population of children admitted to the neurosciences unit. The M P O C 56 instrument was developed by researchers from the Neurodevelopmental Clinical Research Unit, McMaster University and Chedoke-McMaster Hospitals in Hamilton, Ontario, and was revised for use in this (overall) study. The standardized M P O C is a 56 item questionnaire that is useful and relevant for measuring parents' perceptions of care-giving, whatever the child's diagnosis or the specific types o f services received (King, K i n g & Rosenbaum, 1995). Parents respond to the items about interpersonal aspects of care-giving by using a 7-point Likert scale ranging from 1  35 (never) to 7 (to a great extent). The category of "not applicable" allows participants to respond appropriately when the item does not apply to them. Approximately 1500 parents from 13 Child Development Centres in Ontario participated in the M P O C 56 instrument development and validation studies. The majority of the families were English-speaking and were part of two parent families. The majority of the parents had high school education or better. A l l of the families had children with disabilities who ranged in age from birth to 20 years of age (King, K i n g & Rosenbaum, 1994). The M P O C 56 has five scales as determined by factor analysis: enabling and partnership; providing general information; providing specific information about the child; coordinated and comprehensive care for child and family; and respectful and supportive care. The instrument is reliable and valid. Internal consistency was examined using three data sets: 1) data from the pilot testing; 2) data from field testing; and 3) data from the test-retest reliability study. M P O C 56 demonstrated good internal consistency with alphas ranging from .81 to .96 in the pilot data, from .82 to .96 in the field testing data, and from .63 to .94 in the reliability data. This researcher discussed the proposed use of M P O C - R with Dr. Peter Rosenbaum and M s Suzanne K i n g , researchers from the Neurodevelopmental Research Team at McMaster University and Chedoke-McMaster Hospitals, the designers of the instrument. They indicated their enthusiasm and support for using M P O C - R in an acute neurosciences inpatient unit and indicated that their permission to use the existing instrument was not required since the tool is in the public domain (personal communication, July 10, 1996). Recognizing that wording of the instrument needed to be changed for acute care use, these  36 researchers have been active participants in the current study team's revisions. They initially requested that no items be deleted, since families have the option of marking "not applicable" to any questions that do not appear suitable to an acute inpatient setting. The minor revisions of the tool undertaken for this study are as follows: A group of health care professionals from the neurosciences unit, parents whose children were inpatients on the unit, and three researchers involved in the study, individually read and made changes to the original instrument. Changes included, but were not limited to, the following examples: •  "Centre" to "Hospital or Health Care Agency/Service/Program" throughout the instrument.  •  "In the past year" to " During the hospitalization".  •  "Therapy" to "care/treatment" throughout the instrument.  •  Changing examples of treatment, care and services, such as "equipment, school, therapy", to include "medications".  •  "Parent of a child with a disability" to "parent of an ill child".  •  "Seem aware of your child's changing needs as he/she grows" to "seem aware of your child's age appropriate needs".  •  List of health care professionals was expanded to include nurses, child life workers, and nutritionists. Following this initial process of revision, several conference calls took place with Dr.  Rosenbaum, Ms King, Dr. Hayes, and this author for the purpose of discussing and arriving at consensus regarding the proposed changes to the instrument. The selected items changed  37  were altered only to ensure the tool was applicable to an acute care setting. While the revisions do not alter the intent of the questions, it is recognized that any changes to a data collection tool may affect previously reported reliability and validity (Woods & Cantanzaro, 1988). To ensure content validity, the revised instrument was completed by six families and six health care professionals from the neurosciences program for review and comment prior to use in the study. No further revisions were required following this pilot test. Procedures This study was initiated following a neurosciences planning day during which the team members identified family-centered care as a program priority and requested opportunities to enhance family-centered care on the unit and enrich their practice. An interdisciplinary team from the neurosciences PBCU was formed to design the study. This team actively participated in all the procedural aspects of the study from the initial development through to the implementation and evaluation process. The team members met regularly throughout the study period to evaluate progress and problem solve as issues arose. They also developed an education day to orient the rest of the neurosciences team members to the implementation of the new/modified family-centered care procedures. The procedural aspects of this (thesis) study were as follows: On admission to the unit, the admitting nurse ensured that all parents of children admitted for a neurological or neurosurgical condition were provided with a copy of the Parent Information Sheet (Appendix B), and offered a brief verbal introduction to the study. The information sheet and explanation emphasized that participation was voluntary and responses would be entirely confidential. Each parent was asked to let the staff nurse or  38 charge nurse (or delegate) know if he or she wished/did not wish to participate in the study. Parents who agreed to participate were informed that they could withdraw from the study at any time. Approximately one day prior to discharge, the primary nurse asked the parent if she/he would like to participate in the study. When parents indicated that they were adequately informed and willing to participate, they signed the Consent for Participation form (Appendix C), and were given a copy for their own records. Mailing addresses were obtained from parents interested in receiving a summary of the research findings. Following signed consent, and as close to the discharge date as possible, parents were provided with the MPOC-R instrument, a socio-demographic information sheet (Appendix D), and an empty envelope. Parents were given a choice of completing the questionnaire in a patient area, at the nursing station, or in an office on the unit. To protect the integrity of the study, parents were asked to refrain from discussing their responses to the questionnaire with other parents or any members of the interdisciplinary team. Patient kardexes (card files containing a summary of specific patient information) were marked by the nurse, indicating that the Parent Information Sheet had been provided to the parents. If parents agreed to participate the nurse also noted whether or not they had been provided with the questionnaire and if it had been completed and returned. Another team member checked these kardexes each day to ensure that all qualifying/eligible parents received the Parent Information Sheet and the questionnaire, and that the questionnaire had been returned. Parents were asked to return the questionnaire to a sealed box on the unit.  39 Protection of Human Rights This study was reviewed and approved by the hospital's In-House Research Review Committee (Appendix E) and the University of British Columbia's Behavioral Sciences Screening Committee for Research and other Studies Involving Human Subjects (Appendix F). The rights of the participants were protected in the following ways: •  The MPOC-R tool was given to parents only with their written consent.  •  A written description of the study and an explanation of the researcher's expectations of participants was made available to families prior to obtaining consent, whether they were in the study group or not.  •  Families were advised that not participating in the study would in no way affect their child's treatment or care.  •  Prior to completing the tool, the families were reminded that their right to not participate would be unconditionally respected.  •  Families were informed that the information they provided through the questionnaire would remain confidential and anonymous and were for study purposes only, and that the results would not be revealed to any staff member. The questionnaires will be destroyed one year after the study has been completed. There was no identification of the child or the family on any written materials that were a part of the study and consent forms were stored separately.  •  Families were informed that participation involved no expected risks to themselves or their child.  •  Access to the raw data was restricted to two researchers and an individual who  40 entered the data into a computer. The data were stored in a locked filing cabinet. •  Families may benefit from this study as the results may assist staff in identifying aspects of care that are helpful to parents during hospitalization, and may assist staff to learn behaviours that parents see as valuable and desirable. Data Analysis To answer the two research questions, data were analyzed using descriptive statistics.  To determine parents' perceptions of the interpersonal aspects of care-giving the means, range of scores, and standard deviations of the instrument items were calculated for each scale. To determine if there were differences in parents' perceptions according to their children's diagnoses, it was anticipated that a t test for testing differences in means would be used. On V  visual examination of the data and confidence intervals it was evident that a t test statistic was unwarranted. The following chapter presents the demographic data describing the study respondents and their children, the findings of the study, and concludes with an analysis and interpretation of the findings.  41  CHAPTER 4 Presentation and Discussion of the Findings The findings of this study are presented and discussed in three sections. The first section presents demographic data describing the study participants and characteristics of the hospitalized children. The second section answers the two research questions by describing parents' perceptions of the interpersonal aspects of care and differences in parents' perceptions according to their children's diagnoses and/or reason for hospitalization. Selected findings are discussed in the final section.  Description of the Study Participants A convenience sample of parents (n=50) was recruited from a tertiary level pediatric neurosciences unit over a two month period from October 1 to December 1, 1996, in order to explore parents' perceptions of the interpersonal aspects of care-giving. A total of 118 children with neurological or neurosurgical problems was admitted to the unit during this period of time. O f this number, 103 families were eligible to participate in the study. The 15 families not eligible were excluded because they did not speak English (four families), were in crisis (two families) or were admitted more than one time during the study period and had therefore completed the questionnaire previously (nine families). The questionnaire was given to 78 families and 50 were returned, for a response rate of 64%. Twenty five families did not receive the questionnaire because o f unit related issues (casual nursing staff who were unaware of the need to provide families with the questionnaire or regular staff nurses who were too busy and forgot or the discharge order was written unexpectedly, therefore allowing too little time for the parent to complete the questionnaire).  42 Respondents The demographic characteristics of the parent respondents are shown in Table 1.  Table 1. Demographic Characteristics of the Families (n=50) Family Income  %  Relationship to the Child  %  < than $15000 $15000-$29000 $30000-$44999 $45000-559000 $60000-$74999 > than $75000 Total Missing  6 24 20 22 10 12 94 6  Natural mother Natural father Adoptive mother Other guardian Both parents completed form  80 10 2 2 2  Total Missing  98 2  Education of Parent  _%  Age of Parent  %  21-30 31-40 41-50 51-60  24 44 28 4  Some high school Completed high school Some technical/college Some university Completed university Total  10 32 40 4 14 100  Total  Familv Tvpe  %  Number of Children  Two-parent Single-parent Missing  96 0 4  1 child 2 children 3 children 4 children or more Total  Total  100  100  %  22 58 8 12 100  Most of the parent sample (80%) consisted of natural mothers. The ages of the respondents ranged from 21 to 60 and most (44%) were between 31 and 40 years of age. The educational levels of the respondents and their spouses were relatively high with most (58%) having progressed beyond high school. O f these parents, 14% had completed university. Most of the  43 respondents (96%) were from two parent families and most of the families (58%) had two children. Sixty-six percent of the participating families reported their income in the category of $15000 to $59000. A l l of the families were English-speaking. Children of the Respondents The demographic characteristics of the children with long term health conditions whose parents participated in the study are shown in Table 2.  Table 2. Demographic Characteristics of the Children (n=50)  Ape of child  %  < than 2 years 2 to 5 years 6 to 12 years 13 to 16 years More than 17 years Total  18 20 38 20 4 100  Ethnic Background  %  Canadian Native Indian Indo Canadian French Canadian Chinese British Missing Total  58 6 4 2 2 2 26 100  Sex of child  %  Male Female  54 46  Total Reason for Hospitalization Seizures Shunt revisions Brain Tumour Headache Head Injury Rhizotomy Other Total  100  %  28 18 6 6 6 4 32 100  The children ranged in age from less than two years to 19 years. Most (38%) of the children were in the age range of 6 -12 years, and a slight majority of the children were males (54%). The primary health concern reported by the respondents was neurological or neurosurgical in nature. Fifty-six percent of the children were admitted for treatment of a neurological  44 disorder and 44% for a neurosurgical problem. The hospitalization was a first admission for most of the children (58%), and the most common reasons for hospitalization were for treatment o f seizure disorders (28%) followed by surgery for a shunt revision (18%). Although predominately Caucasian, the children represent a culturally diverse group o f families, which reflects the diversity of the population served by the hospital.  Measures of the Processes of Care-Revised Responses Recall that the M P O C - R questionnaire asks parents to indicate the extent to which they experience a variety of behaviours of health care professionals. Parents are asked to indicate "how much" or "to what extent" an event or situation happens to them on a 7-point Likert scale (1 is "never", 4 is "sometimes" and 7 is "to a great extent"). Included as well is a "non-applicable" category. Each scale score is calculated by averaging the scores o f all the items on the particular scale. The findings from the M P O C - R questionnaire are organized by the five subscales: Enabling and Partnership, Providing General Information, Providing Specific Information, Coordinated and Comprehensive Care, and Respectful and Supportive Care. The means for the subscales provide useful statistics that summarize the parents' reports on the relative strengths and weaknesses of the neurosciences P B C U . A mean score o f four indicates that on average parents report that care providers "sometimes" meet parents' needs on that particular scale. Needs are met "to a great extent" with a mean score of seven. A mean score of one on the scale indicates that parents needs on that subscale were "never" met (King, et al., 1995). M P O C 56 can "be considered a measure o f the extent to which services are family-centered" (King et al., 1995, p.l). A summary of the descriptive statistics for the M P O C - R scales is  45 shown in Table 3. These statistics are used to answer the first research question: What are parents' perceptions of the interpersonal aspects of care-giving in a tertiary level neurosciences unit?  Table 3. Descriptive Statistics for MPOC-R Scales  Enabling and Partnership Provide General Information Provide Specific Information Coordinated and Comprehensive Respectful and Supportive Care Valid N (listwise)  N  Min  Max  Mean  50 47 49 50 50 47  2.63 1.00 1.80 2.44 2.44  7.00 7.00 7.00 7.00 7.00  5.23 4.18 4.78 5.17 5.59  SD  Range  1.36 1.53 1.46 1.19 1.16  4.37 6.00 5.20 2.38 2.32  Scores Within M ± 1 SD 3.87 2.65 3.32 3.98 4.43  to to to to to  6.59 5.71 6.24 6.36 6.75  A s shown in Table 3 the lowest mean in this data set is 4.18 (SD=1.53) for Providing General Information and the highest mean is 5.59 (SD=1.16) for Respectful and Supportive Care. Findings indicate that during a particular period of time, in general, parents reflect the views of a relatively satisfied group of consumers who view the interpersonal aspects o f caregiving on this particular neurosciences unit positively. The parents report the team members are good at providing Respectful and Supportive Care, Coordinated and Comprehensive Care, and encouraging Enabling and Partnership, but only "sometimes" provide General and Specific Information to families. Figures 1 to 5 provide a graphic description of the summary of the M P O C - R items for the individual scales. The first scale, Enabling and Partnership, includes 16 o f the M P O C - R items and looks at parents' perceptions of their involvement as team members in the process  46 of their children's care. It includes health care professional behaviours such as explaining treatment choices and providing opportunities for parents to make decisions regarding the care of their children, and indicates parents' perceptions of health care providers' behaviours that support their involvement in the care process. A s shown in Figure 1, parents' mean score was 5.23 with a standard deviation of 1.36. The scores range from 2.63 to 7.00 and the scores within one standard deviation have a relatively narrow range (3.87 to 6.59). This scale also has the highest minimum score of 2.63.  F i g u r e 1:  Enabling &  Partnership  16 •• 14 . 12 . Number o f  Parents  10.  8 . 6• 4• S t d . D e v = 1.36  2.  M e a n = 5.23  0 _  N = 50.00 1.00 Never  2.00  3.00  4.00 Sometimes  5.00  6.00  7.00  Great Extent  The Providing General Information scale (Figure 2) includes nine items from the M P O C - R and looks at various activities that fulfil parents' general information needs. These entail health care professionals' behaviours such as providing families with information, providing advice on ways to access information, and providing information regarding  47 available resources in the community. The parents' mean score is the lowest of all the scales (4.18), and has the widest standard deviation (1.53) o f all the scales. For this particular scale one can see that the scores within one standard deviation of the mean have a relatively wide range (2.65 to 5.71) and the scores cover the full range o f possible values from 1.00 to 7.00. This scale has the lowest possible value (1.00) of all the scales.  F i g u r e 2:  Providing G e n e r a l  Information  14 12 10 Number of Parents  8  S t d . D e v = 1.53 Mean = 4.18 N = 47.00 1.00 Never  2.00  3.00  4.00 Sometimes  5.00  6.00  7.00  Great Extent  The Providing Specific Information scale combines five of the M P O C - R items and looks at parents' perceptions of health professionals' behaviours that ensure parents are provided with specific information about their own child. A s shown in Figure 3, parents' mean score was 4.78 with a standard deviation of 1.46. Similar to the previous scale, the Providing Specific Information scale scores that fall within one standard deviation of the mean also have a relatively wide range (3.32 to 6.24) and the scores cover a wide range o f  48 values from 1.80 to 7.00.  Figure 3:  Providing S p e c i f i c Information  14  12  10  Number of Parents  8  Std. Dev = 1.46 Mean = 4.78 N = 49.00 1.00  Never  2.00  3.00  4.00  Sometimes  5.00  6.00  7.00  Great Extent  The Coordinated and Comprehensive Care scale encompasses 17 items from the M P O C - R and looks at continuity and consistency of care over time and with various health care professionals. It also looks at whether care is provided in a holistic way to the child and family. The questions in this scale indicate behaviours that parents perceive to be helpful in providing continuous and consistent care. A s shown in Figure 4, parents' mean score was 5.17 with a standard deviation of 1.19. One can see that the scores for this scale that fall within one standard deviation of the mean is relatively narrow (3.98 to 6.36) with a range of values from 1.80 to 7.00.  49  Figure 4: Providing Coordinated & Comprehensive Care 16 14 12 Number of 10 • Parents •  8  • Wk%  6  •HHfl  B  1.00 Never  ^  2.00  •n  .  3.00  HHHB •IHH  Std. Dev = 1.19 Mean = 5.17  Jj  4.00 5.00 Sometimes  N = 50.00 6.00  7.00  Great Extent  The Respectful and Supportive Care scale is composed of nine items on the M P O C - R that describe behaviours that indicate families are treated as experts about their own child, are treated as equals, and as individuals. It includes items regarding health care professionals' behaviours such as allowing time for families to share information, and to treat them as individuals. A s shown in Figure 5, parents' mean score was high (5.59) in comparison with the other scales, with a standard deviation lower than the other scales (1.16). For this scale the scores within one standard deviation of the mean are somewhat similar to Coordinated and Comprehensive Care and are relatively narrow (4.43 to 6.75) with a similar minimum score of 2.44.  50 Figure 5: Respectful & Supportive C a r e 20 *  Number of Parents  Std. Dev = 1.16 Mean = 5.58 N = 50.00 1.00 Never  2.00  3.00  4.00 5.00 Sometimes  6.00 7.00 Great Extent  Although the summary of the data provides useful information about the parents' views of the overall strengths of the neurosciences P B C U personnel and areas for improvement in the climate of care-giving, the item by item information provides greater and more useful detail by showing scales in their component parts. Detailed item by item information regarding each scale is shown in Tables 6 to 10. The first two columns in the tables are specific to the neurosciences PBCU. The second set of columns provides summary information specific to 13 Child Development Centres in Ontario and provide a basis of comparison within which to interpret the findings from the neurosciences PBCU. The tables show the percentage of parents who indicate that a behaviour occurs "never" to "sometimes" (points one to four on the MPOC-R's seven point scale) and the percent who indicate it occurs more than "sometimes" to a "great extent" (points five to seven on the scale). Percentages do not necessarily add up to 100% due to some items being answered as "not applicable."  OX) C cu  « « 13 S o Q ft "5  co £ o .£ CO CD ~H •° Q  Is  o  co  § -a .§ p o E E o  CO  oo CO  oo  ~* TJ-  — VO o  VO VO Ov Ov  >n  r-  t~-  60 S cfl (11 T3 1 g0 .  S .5 55  CN CN  ft <H —  S! E  —< CN  (N  —;  0O VO  cs od  CN  o  o  Ov <c~ <N  s? so  PQ  o  q  0 0 o VO  q  q  Ov o 00 00  o  00  o o  o  o  CN  CN  q  q oo  q od  £  2  q od  o  q od  q  q  q  vo  s? - °  00 S r. a § o \p s & 2 CA C O 3 G  q  vo o  CN  q  vd ov  vo o  S o3 o  O  3  O  •a oo c  Eft o o P-v &  £  S3 -n  is  o  c  3  o  o T3  C  O  ao ft o  o •a  3 <8 CN  ro  0  P- 2  •c-  £ > * • ' * • '  1I 3  o O >> cu la ft H  oo  .5  co  3  <o  S  ra _  ft •c  o >v  ^  o 2 <o  <§ I f cn ._ £  ID co  CU  _ 3  3 a*  •s  o  o 3  O <> - Si >v >iS  o  3  c  3  o  CN  cu  a  B  E « — Si *= & 2 <u B 8 § S .E =3 -2 w — /3 ra ft ~  T3 8 J3  CO  3 O  >v 3 O  3 O •s >v -3 Sra T3 3  >v o  ft CN  ro co vo ro ro  52 co CD  Ce  c  Data opme :ario  1  13 Ch  -CD o > O g jS Q .3 3 T3 o U  00  =  a a § Sf? ° 6 £ B §  o  o  vq oo ro  m  ro  vo  in  VO  —  in Ti-  o o  o o o 00 o © CN in CN •n  ro  O in  TT  t CN Tf  o  ro  o  00  S en C  »>  H Cc, CD  CO  C-  Bo 0) o  in  ro •3-  ro in  VO  oo  d  00 .3  u m  PH CA CD O  Ico  o  »- 6  >n  -H  •n  o o CN © ro  p 00 CN  § O  M to  2  a  g '-3 CD  T3 CD  CO CD =  8 H  p o CN CN VOOO d O  ©  o o o> C N Tf ON  in  o  p d VO  o oo •3-  o o  1-8 o  CD T3  s  S3 CD  o o  O  T3 CD  3  o  2  ^  6  a  £ ea CD J=!  > _o .3 o 3 o CD >, 0 a CJ -4-» "3 CD o JD a 1 ca o > ca C o  ca in >  ca e o  3  1  o > ca  CD >  CD >  ca  J3  VO  00  O  o C  o  21 1I1  ca PI  CD  •a  3  o t3 CB  o  Q  "E.  u  ? o cl  S  CD  J3  a o  .2  O  >n m  CD  00 o c o  J3  CD  o o CD  a  00 .3  CD  00 CD O Cl  o u co  3 O  CD  I "3  8  3  o X) ca  §-  11 •+-»  >  -a  CS CD T3  •> o  CD  o c  c 00  CD  fa  S  CD CD 43  m in in in in ro  CD  VO  a  00  "S  CD O f~. . 1>  IPH  53 60  =  CD  o  a s  cs  O VO  00  VO  o  cfl  CD ^ - '  1 °  •a S o  Ov —i  o o  o  CD  Ov —  00 CN  co  O CO  00  p  u m PM  •9 § -a I  a 2 I 5  O 00  VO  CU  o C  CU 00  T3  a § o \3 a, « c/3  aO  C3  cu Cu  CD  O CN CM  ©  CN VO  O CO  VO  ro  1 O  =:<*  ^  o "a.  a CD  (3 CD  a CD  3  o  o c  >v  u  o  B o >.  3  00 (3  o to  0 a  0  o  C/3 CD  Q  3  +-»  1a, x c CD CN  s .a  o  CD 1 a 00 o .3  CD  CD  •s •s o c  3  .2 '& C  CD  CO  f1 o >. o >v 3 o 3 o  \3  a  2 3o c/3  -*r?  00  •5 CD  CD O  g  •a o o  CD  •§ v °x  o  O  cd a*  CD T3 CO  ith  o  the  D  o ,o CO 3 o >v  3 O >v CD T3  '>  *tD  O u  VO CN  PCN  iX  3  o  CD  ti  3 o >v CD  -a ">  CD  3 o x>  tx 3  11  CO  o c  >.  a  3 O  o i-<  -t-> O  Ov CO  CN IT)  a,  o  c  CD 00 CO  3  CD O  I  OH  54  11 I §. a ' i 3 S ~co  I 0>  S S E K B o ,.o - co  i n  eg a  VO 0 0 O VO t- vo  CN C\  vq vo C N vo VO  00  VO  vq >n oo  CN  a 1-2 a o 13 "8  I  H3 o 43  5  §€ -  VO o  CN  CN  c o C O 0) o  ON  00  s  S ^ PL,  3  OH  UH  CO  o  o o  q oo  o oo  q q 00 vo 0 0  VO VO  Ov VD VO ov  V 3  oo  S  M  10  3 kH 8 i S  CO  •a  «> -  a E w 2 D. Ir! 2 —.  CN If  o  TlCN  o  00  vo fJ> o  q VO  TJ-  CN  CN  o q vd oo CN  vo o  q  CD  CN  CO  a.  3 O 6 m  60  3  S -a — T3  2  «J  CO  00  c  o  3  3  CD CJ  Cc  CO CD ^  -  3  2  Q T3  -tfc  s  •s •s 4*i  3  •3 ~  3  ea o -g  CD  CD  O  •a  3  O XI  3  0 .3  1  3 o  CD  •a  CD  CD  •5  c  -H  —  n  •s  ta  o  00  .3 o  O  S  ~  •a  60  3  35 .2 cs  •c Cu o. o 3 o CD  I  I O 43  3 ** 0 CD  §• s O  CN  3  CO  —' CN  o  >N  Cc O o  00  CD  CN  co  4S  CD  -§  >, o  35 "°  U  O  UH CD  3 O  JH  1 1  3 r-  3  •I" §  o  •a  1  T3 CD  o  3  o >> o  3 -3  CD 00  o  CS CO 00  00  -o 3 •2 UH co CD  CD  2  o  o  a & o 43 > >.  O. «-> <= CD 00 CD b c c 00 00  CD  o •s 3  CD  CL. •c  13  •a  o oo 8  •B  .5 •S 3  0  CD  O  *43 eel  1  CD  CD  o o  o '3 43  o  'p.  o 43  a s  3  -s  o  CD 3 ; E 0 > CD .O CO CD S3 3 3  >N C4H  1  c^ O O  I?  O  CD  •a 3  CD  '5b I PL,  55 00  fl c ™  a  i l l  o CD  ftS2  CD  cd  Q  =  O  +-»  -H  VO  00 00  roo  00  Ov r-  rr-  o  <—i  oo  r-  oo  VO  •car-  a  o "3 CD > .3 CD 13  1 Q o U  cs U <u  C  03  a  CO  o  a  -.c  o r - ^  0  ; — ! C N ' C -  ;  ov ro  O V - H ' O V  CN  ^ H 0 O — 1 - H ^ H - H C N C N  ov  00  d  CD  T3  U m  d -a .s c2u ° a  ss  crt  OH  CN  Ov  oo  VO  o  o  vo oo  vo t—  o CN VO  ro r-  co r-  vO r-  00  CD O  13  d  J3  CD  u  d  C A CD CD dCl  u  > t o a a s  (=0  CD  z  CD  0D  ^  2  d a o -3 CH CD C/D C2 CD a In O  o od  CN  •<*• —  sa _©  •* CN  p od ro  o o r-  CN  vo  CN  CN  —'  1-8 "3,  ? o  T3  .o  d 3 o o -d "°  a  o d  CS  a  a  <+H  § a 13 c3  a  T3  •d  a >o> CD  > 6  0  to  d  •a "~ 0 d  00  1 >v eS  •c o  cn CD  "c3 O  'El  73 d o C3 /  CD  VH  T3  O  43  CD  00  d  S3  CH  I  CD  CD  J3  CD  CD  •§ cv °  x  o cu  •3 .3  •3 C3 u CD  O O  d CD CD  o o 13 •oo  ^  d -a o d  CD CH  d o >.  1H CD  Q  -*->  T3 rS  U. Ov  CN  CS CD  -4-»  — ro  d o  d o  CO CD * -<  CD  >v -4-1  00  a  d o d o  >v  1H  00 —i  13  CH  CD  I>  -o el  CH  S  CD  _do  S3  1  * CD  I1  cs H  CD  d  >v -d  s °  CH  l|  +H  o d  I  CD 00 CS •+-»  2  d  43  CD O  00 — ro  •*  1H  .  u  10.  56 Tables 9 and 10 provide statistics which serve to answer the second research question: Are there differences in parents' perceptions of the interpersonal aspects of care-giving according to their children's diagnoses and/or reason for hospitalization and according to the medical services provided?  Table 9. Comparison of Means and Standard Deviation bv Admitting Diagnosis/Reason for Hospitalization  Procedure  Seizures  Enabling & Partnership  Mean N Std. Deviation  Provide General Information  Provide Specific Information  . Coordinated & Comprehensive Care  Respectful & Supportive Care  5.83 13 1.07  4.32 12 1.43  5.37 13 1.37  5.63 13 1.01  6.07 13 1.10  Shunt  Mean N Std. Deviation  5.26 9 1.70  4.77 8 2.06  4.53 8 1.61  5.51 9 1.21  5.81 9 .98  Others  Mean N Std. Deviation  4.93 28 1.30  3.94 27 1.40  4.57 28 1.41  4.83 28 1.19  5.27 28 1.18  Total  Mean N Std. Deviation  5.22 50 1.35  4.18 47 1.53  4.77 49 1.45  5.16 50 1.19  5.58 50 1.16  Tables 9 summarizes the means and standard deviations, by subscale, for parents whose children were admitted for treatment for seizure activity and shunt revisions. One can see that the lowest mean is 3.94 (SD=1.40) in the Providing General Information scale and the highest mean is 6.07 (SD=1.10) for the Respectful and Supportive Care scale. Table 10 shows statistical information comparing the means and standard deviations for parents whose  children were admitted for a neurological or a neurosurgical condition. From this data set one can see that the lowest mean is 4.11(SD=1.34) for the Providing General Information scale and the highest mean is 5.65 (SD=1.25) for the Respectful and Supportive Care scale. The neurological and the neurosurgical categories are similar in that they are both lowest in Providing General Information and Providing Specific Information and are both highest in the Respectful and Supportive Care scale. The findings suggest no difference in parents' perceptions of care-giving according to their children's diagnoses and/or reason for hospitalization. O n visual examination of the data and confidence intervals there was no indication to warrant further statistical calculations, such as running t tests, to compare the differences between the means.  Table 10. Comparison of Means and Standard Deviation bv Medical Service  Medical Service  Enabling & Partnership  Provide General Information  Provide Specific Information  Coordinated & Comprehensive Care  Respectful & Supportive Care  Neurological  Mean N Std. Deviation  5.36 28 1.37  4.11 26 1.34  4.84 28 1.58  5.23 28 1.16  5.65 28 1.25  Neurosurgical  Mean N Std. Deviation  5.07 22 1.36  4.28 21 1.76  4.70 21 1.30  5.09 22 1.26  5.50 22 1.06  Total  Mean N Std. Deviation  5.23 50 1.36  4.19 47 1.53  4.78 49 1.46  5.17 50 1.19  5.58 50 1.16  58  Discussion of the Findings The M P O C 56 instrument was originally "created within a social climate that has focused increasingly on family-centered services...its purpose is to evaluate parents' perceptions of the processes by which services are delivered to families with a child with a neurodevelopmental disorder" (King, Rosenbaum & K i n g , 1996, p 768). The revised version ( M P O C - R ) was used to explore parents' perceptions of the interpersonal aspects of caregiving in a tertiary level acute care neurosciences setting. A s discussed earlier, M P O C 56 demonstrated good internal consistency and validity and parent input was sought throughout the development and testing process (King et al., 1996). Care was taken to maintain this reliability and validity during the revision process by consulting closely with the designers of the instrument. The selected items that were altered were changed only to ensure that the tool was applicable to an acute care setting. The views of selected parents whose children were admitted to the unit were requested and used throughout the revision process. T o ensure that the content was appropriate and that the language of the questionnaire was understandable and applicable to their situation, M P O C 56 was given to six parents (both mothers and fathers) of children admitted to the neurosciences unit. The parents were asked to comment on the specific wording and readability of the items, the appropriateness and acceptability of the questions and the relevance of the questions to them. Subsequently, a draft version of the revised questionnaire ( M P O C - R ) was then given to six different parents on the same unit to again provide feedback. In addition to parent feedback into the development of the revised version of M P O C 56, neurosciences team members were also asked to evaluate the tool using the same  59 instructions as those given to the parents. Once this process was completed, and the M P O C - R was thought to represent the activities and behaviours of the neurosciences unit and thought to be appropriate to the neurosciences setting, the study proceeded. The results of this study reveal that, for the most part, parents report a relatively family-centered climate on the neurosciences unit. In analysis of the interpersonal aspects of care-giving in the Enabling and Partnership scale, analysis indicates that this scale has the highest mean score, indicating that parents experience enabling and partnership "more than sometimes." A closer look at the item by item information confirm this finding. Eighty-four percent of the parents indicated they receive positive feedback and encouragement from the team members and 78% of the parents indicated that team members explain the reasons for the care and treatment that is provided. Also on a positive note, 73.5% of the parents indicated the team members fully explain treatment choices to them and 74% indicated that health care professionals trust them as the "experts" on their own child. O n the other hand, almost half of the parents (49.1%) indicated that they often do not have the opportunity to choose when and what information they wish to receive. Although the literature is clear that parents want and need information in order to make appropriate decisions around their children's care, they do not consistently receive this information. The parents' mean score is the lowest in the scale and this is reflected in an examination of the item by item information. Family-to-family support is desirable to parents, yet the findings from this study indicated that 68% of the parents reported this does not happen on a regular basis. Regrettably, many family members (60%) reported that opportunities for the whole family to obtain information is also a problem. H a l f of the parents  60 (49%) indicated that information to help them cope with the impact of their children's disability is provided only "sometimes" or less. Obtaining information about resources (library, support groups) is difficult, and 54% indicated they only "sometimes" received this information. Findings about parents' perceptions regarding specific information about their own children indicated a gap in what parents would like to receive and what they actually receive. Although the literature suggests that parents want written information about their children's care and treatment, 62% of the parents indicated that only "sometimes" or less do they receive any. It is interesting to note that one third of the parents responded that only "sometimes" or less do the team members provide them with information regarding their children's progress. On the other hand, it is interesting that many parents (78%) indicated that health care professionals usually explain what they are doing during the child's treatment or care. Seventy percent of the parents indicated they frequently receive the results from their children's tests. In spite of the positive responses for some of the item by item questions, parents are not consistently provided with the specific information they require to make informed decisions regarding their children's care. The findings suggest that parents are a relatively satisfied group of consumers with regards to Coordinated and Comprehensive Care. Parents (82%) indicated that "to a great extent" team members take time to make them feel comfortable during the hospital stay. Seventy-four percent of the parents indicated that the needs of the whole child (mental, emotional and social) were addressed "more than sometimes". Most parents (83.8%) indicated that team members demonstrate sensitivity to their feelings about having a child in  61 hospital. In spite of the difficulties encountered in providing continuity o f care within a system that uses 12 hour nursing rotations and a weekly rotating physician schedule, parents reported that care is provided in a manner that is relatively coordinated and continuous on the neurosciences unit. O n a less positive note, a number of parents (42.9%) indicated that short and long term goals are not usually established for their children and many parents (42%) indicated that care plans suggested by health care professionals do not often fit with their family's needs and lifestyle. It is gratifying to note that parents reported that care is provided in a respectful and supportive manner. Most families (92%) responded that they are accepted non-judgementally by the team members, 86% experienced a caring atmosphere on the unit, and 84% found the team members to be polite and courteous. Many family members indicated they are treated as individuals rather than a "typical" parent with an ill child. However, 38% of the parents responded that they are not treated as equals by the health care team. Overall, this sample of parents reported that the team members in the neurosciences unit treat children and families in a respectful and caring manner. It is somewhat surprising that the findings indicate no difference in parents' perceptions of the interpersonal aspects of care according to their children's diagnoses and/or reason for hospitalization. Observations in the clinical setting indicate that parents of children admitted for investigation of a neurological disorder often express unhappiness with the care provided. This may be due to the long term nature of the disorder, parents wanting a "cure" which may not exist, frustration that seizures continue for many years, and a diagnosis that is sometimes elusive and difficult to determine. O n the other hand, observations in the clinical  62 setting indicate that parents of children admitted for a neurosurgical condition tend to be a relatively satisfied group o f consumers. The diagnosis is often made rapidly, the course o f treatment is usually clear, treatment modalities are readily available and can be implemented quickly, the course o f the hospitalization is usually predetermined and can be share accurately with the family, and the hospital experience is relatively brief. The lack of differences in perceptions between the two groups o f parents should be viewed with caution because this may be due to the fact that the instrument cannot detect differences in similar and small groups o f children. The findings may have been different i f the neurosciences group had been compared to a very different group such a general surgery group, where the outcome is usually positive. Differences may also have emerged i f other instruments were used. In addition, the sample size used to compare differences in perceptions according to the diagnoses and/or reason for hospitalization may not have been large enough to detect differences. The findings from this study must be considered only suggestive because of study design features that restrict external validity and therefore limit generalizability. The limitations o f this study were four-fold: a relatively small sample size and a sample o f convenience was used, the study was limited to a single unit on one hospital site, and a newly revised instrument was used. The first limitation o f the study results from a relatively small sample size (n=50), limiting generalizability of the results. Polit and Hungler (1991) note that less accurate estimates are obtained with smaller samples and recommend using the largest sample size possible in order be as representative of the population as possible. Within the time and  63 budgetary constraints of the study, as large a sample size as was possible was obtained. The parents who participated in this study represent the consenting respondents from among a larger pool of parents who were solicited for the study. The voluntary nature of the sample resulted in a sample of convenience rather than a randomly selected sample of parents. Convenience sampling consists of the most accessible and available subjects, is the weakest form of sampling, and may result in subjects that are atypical of the population (Polit & Hungler, 1991). A convenience sample was used in this study to optimize the sample size. The use of a random sample may have produced a more accurate and representative sample. A further limitation of the study resulted because it was conducted on one unit in a single hospital site, once again limiting generalizability to the population of parents whose children were admitted to the neurosciences unit during this study period. The fourth limitation of the study was the use of a newly revised instrument ( M P O C R) with restricted evidence of reliability and validity in an acute care setting. M P O C 56 was developed for use with parents of children with chronic, stable, neurodevelopmental disabilities (King etal., 1996). The M P O C - R was used with parents of children with longterm conditions during an acute episode of illness. Since no other acute care centre has yet conducted studies using the M P O C - R , appropriate comparisons are not possible. A replication of this study in a similar setting (acute care) with a similar population (children with long term health conditions) would contribute to further refinement of the instrument. A strength of the study is the fairly high response rate (64%) leading to the possibility that those parents who did respond to the questionnaire are typical of the whole population of parents whose children were admitted to the neurosciences unit during the study period.  64 Another strength is the cultural diversity of the parent respondents which also serves to enhance the external validity of the results. Data obtained for this study were gathered by self-report, and therefore bias in the results cannot be ruled out. In a tertiary level centre parents o f children with long term health conditions are very dependent on the health care team for their children's care. Even though the respondents were assured o f confidentiality and anonymity, in many cases they have a long standing relationship with the health care team and may have chosen to minimize any criticism regarding staffs interpersonal behaviours. The cross-sectional one-group design chosen for use in this study involves the collection of data at one point in time and is appropriate to use to gather data regarding parents' perceptions of care-giving. Polit and Hungler (1991) note that with a cross-sectional design "the phenomena under investigation are captured, as they manifest themselves, during one period of data collection...surveys, for example, are often cross-sectional" (p. 243). Although the research question in the present study lends itself to the self-report method, an alternative method o f conducting this same study could have been an interview process. Polit and Hungler (1991) suggest that although interviews are costly, prevent anonymity, and can present problems with bias, they have many advantages and may be superior to written questionnaires. These authors note that interview methods: often result in higher response rates, d o not exclude individuals who cannot read the questionnaire, are often clearer and less confusing than a written questionnaire, provide data that may have greater depth and the respondents may add additional data through the interview process. Had the time and monetary resources been available an interview method may have produced  65 different results. The results of this study are consistent with the findings of K i n g et al. (1995) who developed and used M P O C 56 to explore parents' perceptions of the interpersonal aspects of care-giving in child development centres in Ontario. The parents in the neurosciences study have indicated they are slightly less satisfied with the interpersonal aspects of care-giving than those in the K i n g et al. (1995) study. These differences may be attributable to the long term relationship parents have with the health care professionals in the Child Development Centers. In the current study, 56% of the children were experiencing a first admission to hospital and parents had therefore not met nor had the opportunity to build a relationship with the professionals. Additionally, one might assume that differences may exist if the long held belief is true that the medical model reigns supreme in acute care centers and a familycentered model is used in Child Development Centers. A major strength of this study is the fact that the M P O C instrument is based on the key elements of family-centered care and therefore measures what is important to families. The findings of this study are consistent with previously reviewed literature. Although there is a strong body of literature expounding the value of incorporating the family into the hospital care of children with long term health conditions, the practice of family-centered care continues to lag behind the philosophy (Letourneau & Elliott, 1996; Jeppson & Thomas, 1995; Johnson et al., 1992). Previous studies indicate that a lack of clarity exists between parents and health care providers expectations (Knox & Hayes, 1983) and suggest that parents require support, information and time to express concerns. Other researchers have identified needs of families with children with long term health conditions and suggest that  66 information about the child's condition, services needed and family-to-family support are required (Hanson, et al., 1994, Jeppson & Thomas, 1995; Sexton et al., 1992; Able-Boonek, et al., 1989). The family-centered care literature indicates parents want, need and request respectful care, coordinated services, general and specific information, and family-to-family support. The results of this study indicate that these elements are not consistently provided. When interpreting the findings from this study, it is important to remember that while parents indicate that health care professionals "sometimes" meet their needs, this does not mean that every interaction met the parents' needs. A detailed examination of the item-byitem information indicate that parents' needs were not met on a number of occasions. A question that may be asked is whether or not the neurosciences team members are providing acceptable interpersonal family-centered care to children and their families in this study. According to K i n g et al. (1995), uncertainty remains "about whether there is a lower limit of 'acceptable' scale scores for programs judged to be 'good enough,' what sizes of differences on scale scores differentiate 'better' from 'poorer' programs, or what scores represent an acceptable improvement over time when programs change their service delivery model" (p. 62). Since no clear answer exists, individual programs such as the neurosciences P B C U , in consultation with families, may be in the best position to decide what is an "acceptable" score and in what areas the program needs to improve.  Summary The results presented here contribute to our understanding of how well familycentered care is progressing in the pediatric tertiary level unit where the study was undertaken. The findings, however, raise many other questions. In view of the findings, and  67 despite the limitations, a number of implications for clinical practice, education, and research are apparent and will be discussed in the next chapter. This study was motivated by the neurosciences team members' value that familycentered services are desirable and reflect best practice in providing services to children with long term health conditions and their families. The findings are valuable to health care professionals involved in the care of children with long term health conditions and their families. The findings reveal that generally parents are "somewhat" satisfied with the interpersonal aspects of care-giving in the neurosciences unit, where the study took place. In particular, parents indicated that the neurosciences team members are good at providing respectful and supportive care, providing coordinated and comprehensive care, and encouraging enabling and partnership. The results also indicate that parents only "sometimes" receive general information and specific information about their own child. The findings reveal no differences in parents' perceptions of the interpersonal aspects of care-giving according to their children's diagnoses and/or reason for hospitalization. This is the first usage of a newly revised instrument ( M P O C - R ) in an acute care setting. Although the sample size in this current study is relatively small (n=50), a cautious comparison to the previous usage of M P O C 56 can be made, and it seems to be a good indicator of the climate of family-centered care. It can be expected that some differences might exist between the two instruments because the milieus in which they are used is different.  68  CHAPTER 5 Summary. Conclusions and Implications As has been presented in more detail in the previous chapters, this study answers the questions: what are parents' perceptions of the interpersonal aspects o f care-giving on a tertiary level neurosciences unit? Are there differences in parents' perceptions according to their children's diagnoses and/or reason for hospitalization? Following a summary of the study, the conclusions, implications and recommendations for practice, education, administration and research are presented.  Summary of the Study A goal of the neurosciences P B C U is to work together with families and team members to ensure that families remain the true focus of services. A priority within the P B C U is to continue to enhance family-centered care services and practices. Team members have articulated a committment to this approach to working with families is consonant with their beliefs and can result in a deep sense o f satisfaction for themselves and the families. The purpose of this study was to evaluate one outcome of current family-centered services in the neurosciences P B C U and parents' perceptions of the interpersonal aspects of care-giving. The study asks the questions: What are parents' perceptions o f the interpersonal aspects o f care-giving on a tertiary level neurosciences unit and are there differences in parents' perceptions according to their children's diagnoses and/or reason for hospitalization? The research questions were answered using a self-administered questionnaire to obtain data regarding parents' perceptions o f the interpersonal aspects o f care-giving. A self-administered parent questionnaire, the Measures of the Processes o f Care, was  69 used in this descriptive study. This method was selected due to the limited time frame in which to complete the thesis part of this study and limited available funding. In order to establish the need for research on the topic, a body of related literature was reviewed. The limited amount of literature related to the specific topic led to a review of several related subject areas exploring family-centered care, the current status of familycentered care, family stress during hospitalization, and parents' perceptions of familycentered care in a variety of settings. The literature review supports the notion of exploring parents' perspectives of the interpersonal aspects of care in a tertiary level setting. The data were collected during a two month period of time from October 1 to December 1 1996 by means of a revised 56-item, five subscale self-report Measures of the Processes of Care questionnaire and a socio-demographic tool. Parents responded to items about the interpersonal aspects of care by using a seven point Likert scale ranging from 1 (never) to 7 (to a great extent). Data were analyzed using descriptive statistics. A convenience sample of parents (n=50) was recruited from a 20 bed tertiary level pediatric neurosciences unit. Eighty percent of the study respondents consisted of natural mothers. The majority of the families (96%) were two parent families and most (58%) had two children. The educational level of the respondents was relatively high with most (58%) progressing beyond high school. A l l the respondents were English speaking. Most of the children (38%) were in the six to 12 year age bracket and a slight majority (54%) were male. Most of the children were admitted for treatment of a neurological disorder (56%) and the balance (44%) were treated for a neurosurgical procedure. The hospitalization was a first admission for most of the children (58%) and the most common reason for  70 admission was for the treatment o f seizure activity (28%) followed by surgery for a shunt revision (18%). Although predominately Caucasian (56%) the children represent a culturally diverse group of families. The parents report that the neurosciences team members' behaviours "sometimes" meet their needs. In particular, the team members were reported to be good at providing Respectful and Supportive Care, providing Coordinated and Comprehensive Care, and encouraging Enabling and Partnership. The findings reveal no difference in parents' perceptions of the interpersonal aspects o f care-giving according to their children's diagnoses and/or reason for hospitalization. Results suggest that parents o f children admitted to the hospital for treatment of a neurological disorder (n=28) do not differ in their perceptions o f the interpersonal aspects of care-giving from those whose children are admitted for a neurosurgical procedure (n=22). N o r do the results indicate any difference in the perceptions of parents whose children are admitted for treatment o f a seizure disorder (n=14) or a shunt revision (n=9).  Conclusions The following conclusions are drawn from the findings of this research study: 1.  During a particular period of time the parents reflect the views o f a relatively satisfied group of consumers who view the interpersonal aspects of care-giving on this particular neurosciences unit positively.  2.  Parents indicate that neurosciences team members are providing Respectful and Supportive Care, providing Coordinated and Comprehensive Care, and encouraging Enabling and Partnership.  71 3.  Parents indicate the neurosciences team members "sometimes" provide General Information and Specific Information about their own child, such as advice on how to get information, providing information about resources and services in the community, and providing specific information to families about their own child.  4.  There is no difference in parents' perceptions of the interpersonal aspects of caregiving according to the reason for their children's hospitalization and/or diagnoses, nor is there a difference according to medical services.  5.  The M P O C - R instrument was useful in measuring the interpersonal aspects of caregiving in a pediatric tertiary level neurosciences unit. This project reinforces that quantitative study of parents and their perceptions of the  interpersonal aspects of care-giving provide valuable insights. It also reinforces that a caring and committed interdisciplinary team of health care professionals can willingly expose their practice to evaluation and scrutiny for the purpose of improving the practice of familycentered care on their unit. This project also reinforces that parents and professionals can and are working together in colleagial relationships to seek innovative ways to care for children and families—ways that are satisfying and rewarding for both family members and health care professionals. Despite the limitations of this study, the findings have provided clear implications for health care professionals' clinical practice and education, administration, and research.  Implications for Clinical Practice and Education Although the parents in this study reflect the views of a relatively satisfied group of consumers who view the interpersonal aspects of care-giving on the neurosciences unit  72 positively, the findings indicate that team members only "sometimes" provide information. In particular, parents' reported mean scores for Providing General Information and Providing Specific Information scales are the lowest means of the five scales. The implications for clinical practice and education will focus specifically in these areas although it is recognized there are many implications resulting from the findings. Although there are many ways in which to support and promote information sharing with families, the following section describes the specific intervention planned by the team members from the neurosciences unit to be used in the larger study. One will recall that the larger study will explore parents' perceptions of the interpersonal aspects of care-giving prior to and following an action/education intervention. The goal of the intervention is to make particular changes in the team members' practice to facilitate and encourage information sharing between families and professionals. The literature indicates that parents want information on a continuous basis and they want to receive information that is complete, that is given in a supportive manner, that is free of jargon, and that is unbiased (Hostler, 1994). Health care professionals can support families in their need for information by including them in the planning and decision-making to the extent family members choose to participate. This support can be provided during the preadmission phase of the hospitalization, during the on-going daily care of the child and family, and during the discharge process. The pre-admission process is an ideal time to provide parents with systemic information about how the unit and the hospital function. During the pre-admission process families can be provided with the hospital information booklet and team members can review  73 specific areas with them, such as the hospital routines, the family's rights and responsibilities during the hospitalization, when physicians may be expected to arrive on the unit, and directional maps of the hospital site. It is frustrating for families to wait for long periods of time to get information from their child's physician and then miss them when they leave the unit for a short time. T o avoid this frustration, and to support parents in their need to have access to physicians and other team members, parents need to be oriented during the preadmission process to the use of the unit pager. Parents can be oriented to the use of white boards, which are communication tools located near the bedside of each child. These boards provide family members with up-to-date information such as the names of the various health care professionals caring for their child on a particular day and test results or treatments that may be planned for the day. A clipboard with charting forms can be available at the bedside and families can be encouraged to record important observations, concerns, or questions they may wish to have answered by the team members. Continual efforts to encourage information sharing between parents and health care professionals can continue during the on-going daily care. Team members can update the whiteboards each shift by writing in the correct staff names, noting upcoming tests, procedures or parent conferences. During the on-going daily care, team members can share information with the parents regarding the parent resource library and the availability of brochures, booklets, and videos that may be pertinent to their child's condition. Additionally, this is an opportunity to share with parents information regarding parent support groups, family newsletters, and parent training courses. Parents need to be aware o f the availability of speaker phones which would allow extended family members to participate in the  74 information sharing. O n a daily basis team members can check the white board and the parent charting forms as a method of on-going communication with the family and other team members. Team members will provide the parents with test results as soon as they are available and explain the meaning of the results. Home care instructions can be complex and overwhelming for parents and community care-givers and the neurosciences team members have recently developed a discharge planning form with a goal of both expediting the process and facilitating information sharing. Team members and parents are encouraged to consider home care in relation to the family's lifestyle, considering such items as medication schedules, rehabilitation routines, developmental stimulation, and follow up appointments. A t this time, family members are provided with support group information and other appropriate local community resources. Hostler (1994) suggests that taking the time to assist parents in obtaining and knowing how to access information "is an ongoing process, over days and months and years...professional time invested at the outset will save time later, improve the quality of planning, and serve as the foundation for future decision-making" (p. 43). Although specific behavioural changes in the practices of team members may facilitate information sharing between themselves and parents, these changes may not take place without educational preparation. Education plays a role in determining health care professionals' perceptions and practices of family-centered care and this shift in attitudes, behaviours and helping styles will require education and training that leads to an environment that is supportive of family-centered care. The major learning site for health care professionals and families of children with long term health conditions are hospitals and they  75 are well positioned to take a leading role in the education of health care professionals in the principles and practices of family-centered care. T o assist professionals to make the shift towards family-centered care, hospitals need to stress the importance of this philosophy in their training and inservice programs. With this in mind, the neurosciences team members incorporated an educational component as part of the intervention planned in the larger study. A day long educational session was planned for the neurosciences team members. Since education regarding family-centered care should include families as the experts on their needs, wishes and desires, parents whose children had been admitted to the neurosciences unit played an active part in the planning, implementation and evaluation of the session. Ideally families can act as educators by leading seminars, workshops, inservice and continuing education sessions as they lend a critical perspective to the care of their children. Family members need to be viewed as the experts in the field. While health care professionals spend a great deal of their careers in hospital settings it is easy to lose sight of the day-to-day issues experienced by families with children with long term health conditions and viewing the care of the child over time may not be a priority. In addition to educational programs focussed on enhancing family-centered care, health care professionals need to explore and clarify their personal and professional values, beliefs, and attitudes. Part of the educational process planned by the neurosciences team members involves engaging discussions about their beliefs and attitudes in relation to familycentered care. With the move to family-centered care it is wise to consider that most health care professionals "will care for children...and their families in some context in their careers"  76 (Pridham, Boone & Woodring, p. 273, 1996). Not only will they need to be prepared for this, but they will be faced with an increasing number of children with long term health conditions who are surviving for longer periods of time and with relatively new diseases. Providing services in a family-centered manner "offers effective approaches to promoting health and well-being, preventing disease, and treating acute illness and chronic conditions" (Hanson, et al.,p. 13, 1994). Hostler (1994) suggests that the final responsibility for the implementation of familycentered care is with health care providers. She states that "if they want it, they can have it by motivating families to become collaborators, by enabling them to become effective through training, and by ensuring that the health care providers and their systems are responsive to families" (p. 21). T o become a reality, however, the implementation of family-centered care must not only be supported by front-line professionals but if must also be supported and nurtured by senior administration in the hospital structure. In the following section, implications for administration will be discussed.  Implications for Administration The findings of this study have clear implications for boards of directors, senior administrators, and program directors. Administrators and boards of directors are ultimately responsible for ensuring that parents are satisfied with the services they receive and need to be supportive of initiatives that promote family-centered care and fully committed to the philosophy. Individuals in leadership positions should ensure that initiatives that seek parents' perceptions with the services are a routine and valued part of the care provided, and when these initiatives occur they need to be acknowledged by senior administrators.  77 Program directors need to encourage the development of a vision for family-centered care at the unit level. They can best work towards the enhancement of family-centered care by believing, accepting and living the philosophy that the quality of care for children is determined as much by the method by which it is delivered as it is by its content. Unless this concept is truly accepted the implementation of family-centered care will remain a vision rather than became a reality. In spite of tight fiscal constraints, the value of supporting family-centered care initiatives should be demonstrated by allocating the necessary funding and staff time. The board of directors, administrative staff, program directors and health care professionals need to conceptualize the hospital experience (whether this is inpatient or outpatient) through the eyes of the children and families and not necessarily through the eyes of the staff (Hostler, 1991). T o gain this insight one must simply ask the families to share their perceptions of the services provided by the hospital.  Implications for Research The current study has provided useful information about how services are viewed by parents of children admitted to the neurosciences unit. During the process of conducting the current study, however, the researcher became aware of areas for further research which may address some of the short-comings of the present study. It is interesting that authors of a recent study exploring pediatric research topics predicted to influence the health and wellbeing of children note that "a clear mandate to study children within the context of their families" (Broom, Woodring, & O'Connor-Von, 1996, p. 281) is a high priority. Measurement that explores the social and emotional aspects of care is difficult to accomplish  78 and as a result may not have been as highly valued as research perceived to be more "scientific" and concretely observable. Further research using the M P O C - R instrument is suggested and is a part of the larger project presently in progress on the neurosciences unit. Extending the present study, this research will explore parents' perceptions of care-giving following an action/educational intervention focused on a specific change in the structure or style of care-giving on the unit. If parents perceive changes in family-centeredness following an intervention o f this nature, the findings may provide health care professionals with information to enhance their present practice and develop new models o f family-centered care practice. A further study using a larger sample size by conducting the study hospital-wide and in other acute care facilities is needed, as well as studies in community hospitals. A logical further study, and one that is also in progress on the neurosciences unit, is an exploration of health care professionals' perceptions of family-centered care on a tertiary level neurosciences unit before and after this same action/education intervention. Statistical comparisons will be made to measure whether a change in knowledge and practice regarding family-centered care influences health care professionals' and parents' perceptions of familycentered care and will provide a baseline of information on which to plan for future staff and parent educational sessions. The need for further research using M P O C 56 in program evaluation is supported by K i n g et al. (1995) who suggest that this tool can be used to look at specific services offered by a program. It would be useful to continue to use M P O C - R to study the interpersonal aspects of care-giving in specific areas of the neurosciences program, such as  79 the epilepsy monitoring and surgery and the ketogenic diet service. Both these groups are under represented in the present study due to the absence of several admitting physicians during the study period. Another specific service in the P B C U requiring further research is the exploration of the perceptions of parents whose children were admitted to the neurosciences unit with a non-accidental injury. This group of children is also under represented in the present study simply because there were few admissions to the unit during the study period. This study was limited to an investigation of the perceptions of parents whose children have a neurological or neurosurgical condition. Although the findings of this study will be valuable to the neurosciences team members, the perceptions of these parents may be quite different from those whose children are admitted to the hospital for treatment of another chronic condition, such as cancer or heart disease. A replication of this study using the same tool on another similar unit in the same hospital would be appropriate. This would provide an opportunity for a comparison study of perceptions of parents whose children have a variety of long term health conditions. Directions for further research could also include a comparison of the perceptions of parents of children with long term health conditions with the perceptions of parents of healthy children admitted to the hospital for a single elective hospitalization. This would provide health care professionals with valuable insights into the differences in parents' perceptions of family-centeredness. It would be also be interesting and valuable to conduct a comparison study exploring parents' perceptions of care in a tertiary level neurosciences unit with parents of children who  80 are served by the child development centers in British Columbia. Both agencies serve children with neurodevelopmental conditions but at differing points in the continuum of care. It may be hypothesized that there will be differences in parents' perceptions because acute tertiary centres are thought to provide care using a medical model while outpatient child development centres are presumed to use a more family-centered model of care. This study gathered data from a structured, self report parent questionnaire, resulting in quantitative data only. Polit and Hungler (1991) suggest that combining this method with qualitative methods within a single study is not only a compatible paradigm but may serve to enrich, enhance and complement the quality of the data. These authors further suggest that "by integrating different methods and modes of analysis, the weaknesses of a single approach may be diminished or overcome...by reducing complex human experiences, behaviour and characteristics to numbers, such analysis sometimes suffer from superficiality" (p. 158).  The  melding of qualitative questions with a quantitative survey may have resulted in more indepth information and enhanced the validity of the study. Future research in the area should include qualitative questions. Although the data indicate that a culturally diverse group of parents participated in this study, M P O C - R was presented in English only. The inability of non-English speaking families to participate in the study is a clear limitation. Ideally any further research exploring parents' perceptions of family-centered care in the neurosciences unit should include families who do not speak English since these families may perceive the interpersonal aspects of caregiving very differently than English speaking families. This would require translation and retesting of the tool but would provide a mechanism for feedback regarding parents'  81 perceptions of care-giving from a non-English speaking population. This study was exploratory in nature and its usefulness lies in the fact that it provides one picture of the strengths and weaknesses of care provided in the neurosciences P B C U , from the parents' perspective. The findings challenge the neurosciences team members to continue to enhance family-centered care and services to the families. A s well, the present study generates hypotheses for further research in the area of family-centered care. McBride et al. (1993) suggest that "researchers and practitioners are challenged to examine the efficacy of family-centered services for enhancing the development of children with disabilities and their families" (p. 429). In conclusion, the fifty family members who participated in this study contributed valuable data about their perceptions of the interpersonal aspects of care-giving in a tertiary level neurosciences unit. The findings of this study suggest that an awareness of parents' perceptions is a necessary first step in the processes of enhancing family-centered care practices and services and of improving the quality of care offered to children with long term health conditions and their families. The findings also provide baseline data in preparation for the larger study exploring parents' perceptions of the interpersonal aspects of care-giving following an action/teaching intervention.  82 References Able-Boone, H., Dokecki, P. R., & Shelton Smith, M. (1989). Parent and health care provider communication and decision making in the intensive care nursery. Children's Health Care. 18. 133-141. Ahmann, E. (1994a). Family-centred care: The time has come. Pediatric Nursing. 20. 52-53. Ahmann, E. (1994b). Family-centred care: Shifting orientation. Pediatric Nursing. 20. 113-117. Bailey, D.B., Buyesse, B., Edmonson, R., & Smith, T.M. (1992). Creating family-centered services in early intervention: Perceptions of professionals in four states. Exceptional Children. 58, 298-304. Bailey, D.B., Buyssee, B., Smith, T., & Elam, J. (1992). The effects and perceptions of family involvement in program decisions about family-centred practices. Evaluation and Program Planning. 15. 23-32. Bailey, D.B., Palisha, S., & Simeonsson, R. (1991). Professional skills, concerns, and perceived importance of work with families in early intervention practices. Exceptional Children. 58. 156-165. Baine, S., Rosenbaum, P., & King, S. (1995). Chronic childhood illness: What aspects of caregiving do parents value? Child: Care. Health and Development. 21, 291-304. Broome, M. E., & Woodring, B., & O'Connor-Von, S. (1996). Research priorities for the nursing of children and their families: A delphi study. Journal of Pediatric Nursing. 11,281-286. Brown, J., & Ritchie, J.A. (1989). Nurses' perceptions of their relationship with parents. Maternal-Child Nursing Journal. 18, 79-96. Budreau, G., & Chase, L. (1994). A family-centered approach to the development of a pediatric family satisfaction questionnaire. Pediatric Nursing. 20. 604-608. Burns, C E . (1984). The hospitalization experiences and single parent families. Nursing Clinics of North America. 19. 285-293. Cadman, D., Goldsmith, C , & Bashim, P. (1984). Values, preferences, and decisions in the care of children with developmental disabilities. Developmental and Behavioral Pediatrics. 5, 60-64.  83  DePompei, P., Whitford, M.,& Beam, P.H. (1994). One institution's effort to implement family-centred care. Pediatric Nursing. 2, 119-204. Diamond, J . (1994). Family-centred care for children with chronic illnesses. Journal of Pediatric Health Care. 8. 196-97. Dunst, C.J., Johanson, C , Trivette, C M . , & Harnby, D. Family oriented early intervention policies and practices: Family centered or not? Exceptional Children. 58. 115-126. Dunst, C , Trivette, C , Davis, M . , & Cornwell, J. (1988). Enabling and empowering families of children with health impairments. Children's Health Care. 17. 71-81. Edelman, L. (1991). Getting on board: Training activities to promote the practice of familycentred care. Bethesda, M D : Association for the Care of Children's Health. Graves, J. K., & Ware, M . E . (1990). Parents' and health professionals perceptions concerning parental stress during a child's hospitalization. Children's Health Care. 19. 37-42. Hall, (1987). Social and psychological care before and during hospitalization. Social Science Medicine. 25, 721-332. Hanson, J. L., Johnson, B. H., Jeppson, E . S., Thomas, J., & Hall, J. (1994). Hospitals Moving Forward with Family-Centred Care. Bethesda: Institute for Family-Centred Care. Hayes, V . , & Knox, J. E . (1984). The experience of stress in parents of children hospitalized with long-term disabilities. Journal of Advances in Nursing. 9, 33-341. Horner, M . , Rawlings, P., & Sites, K. (1987). H o w parents of children with chronic conditions perceive their own needs. American Journal of Maternal Child. 12. 40-43. Hostler, S. (1994). Family-Centred Care: A n Approach to Implementation. University of Virginia, Children's Medical Centre, Kluge Children's Rehabilitation Centre, Charlotteville, Virginia. Jeppson, E.S., & Thomas, J. (1995). Essential Allies: Families as Advisors. Bethesda, M D , Institute for Family-Centred Care. Johnson, B. (1990). The changing role of families in health care. Children's Health Care. 19, 24-241.  84 Johnson, B. H., Jeppson, E . S., Redburn, L . (1992). Caring for Children and Families: Guidelines for Hospitals. Bethesda, M D : Association for the Care of Children's Health, 371-406. K i n g , S., K i n g , G . , & Rosenbaum, P. (1994). Report to parents from the M P O C research group on the development of a measure of processes of care ( M P O C ) . Hamilton, O N : McMaster University, Neurodevelopmental Clinical Research Unit. K i n g , S., K i n g , G . , & Rosenbaum, P. (1995). Parents' perceptions of care-giving provided by A T C O centres: A report to centres from the M P O C research group. Hamilton, O N : McMaster University Neurodevelopmental Clinical Research Group. K i n g , S., Rosenbaum, P., & K i n g , G . (1995). The Measure of Processes of Care ( M P O C ) : A means to assess family-centred behaviours of health care providers. Unpublished manual. McMaster University, Neurodevelopmental Clinical Research Unit, Hamilton, O N . K i n g , S., Rosenbaum, P., & K i n g , G . (1996). Parents' perceptions o f caregiving: Development and validation of a measure of processes. Developmental Medicine and Child Neurology. 38, 757-772. Knafl, K . A . (1985). H o w families manage a pediatric hospitalization. Western Journal of Nursing Research. 7, 151-176. Knafl, K., Breitmayer, B., Gallo, A . , & Zoeller, L. (1992). Parents' views of health care providers: A n exploration of the components of a positive working relationship. Children's Health Care. 21, 90-94. Knafl, K . A . , Cavallari, K . A . , & Dixon, D . M . (1988). Pediatric Hospitalization: Family and Nurse Perspectives. Scott, Foresman and Company, Illinois. Knox J.E., & Hayes, V . (1983). Hospitalization of a chronically ill child: A stressful time for parents. Issues in Comprehensive Pediatric Nursing. 6, 217-227. Krahn, G . , Eisert, D., & Fifield, B. (1990). Obtaining parental perceptions of the quality of services for children with special health care needs. Journal of Pediatric Psychology. 15, 761-774. Letourneau, N . L., & Elliot, M . R. (1996). Pediatric health care professionals' perceptions and practices of family-centered care. Children's Health Care. 25. 157-174. Lynn, R . L . (1995). Who is the "family" in family research? Journal of Pediatric Nursing. 10 89-91.  85 Mahoney, G . , & O'Sullivan, P. (1990). Early intervention practices with families of children with handicaps. Mental Retardation. 28, 169-176. McBride, S . L . , Brotherson, M.J., Joanning, H., Whiddon, D., & Demmitt, A . (1993). Implementation of family-centred services: Perceptions of families and professionals. Journal o f Early Intervention. 17. 414-430. McGonigal, M . , & Garland, C . (1988). The individualized family service plan and the early intervention team: Team and family issues and recommended practices. Infants and Young Children. I, 10-21. Ogden Burke, S., Costello, E . , & Handley-Derry, M . (1989). Maternal stress and repeated hospitalizations of children who are physically disabled. Care of Children's Health. 18, 82-90. Polit, D. F., & Hungler, B. P. (1991). Nursing Research: Principles and Methods. Fourth edition. Philadelphia. J.B. Lippincott C o . Robinson, C . A . (1985). Double bind: A dilemma for parents of chronically ill children. Pediatric Nursing. 11. 112-115. Robinson, C A . (1987). Roadblocks to family-centered care when a chronically ill child is hospitalized. Maternal-Child Nursing Journal. 16. 181-193. Rosenbaum, P., K i n g , S., & Cadman, D. (1992). Measuring processes o f care-giving to physically disabled children and their families. I: Identifying relevant components of care. Developmental Medicine and Child Neurology. 34, 103-114. Rushton,, C . (1990). Family-centered care in the critical setting: Myth or reality? Children's Health Care. 19, 68-78. Sexton, D., Burrell, B . , & Thompson, B . (1992). Measurement integrity o f the family needs survey. Journal of Early Intervention. 16. 343-352. Shelton, T . L . , Jeppson, E.S., & Johnson, B. (1987). Family-Centred Care for Children with Special Health Care Needs. Washington, D C : Association for the Care o f Children's Health. Stewart, E . S., & Covington, C . (1992). Parent consultants in the health care system: A new approach in the care of children with special needs. Issues in Comprehensive Pediatric Nursing. 15, 123-139.  86 Thomas, R. B. (1987). Introduction and conceptualframework.  In M . H . Rose & R . B .  Thomas (Eds.), Children with chronic conditions (pp. 3-12).Orlando: Grune & Stratton. Thorne, S. E . , & Robinson, C . A . (1988). Reciprocal trust in health care relationships. Journal of Advanced Nursing. 13. 782-789. Tichy, A . M . , Braam, C M . , Mayer, T . A . , & Rattan, N.S. (1988). Stresses in pediatric intensive care units. Pediatric Nursing. 14, 40-42. Watterton Wells, P., DeBoard-Burns, M . , Cook, R., & Mitchell, J. (1994). Growing up in a hospital: Part 11, Nurturing the philosophy of family-centered care. Journal of Pediatric Nursing. 9, 141-149. Woods, N . F., & Cantanzaro, M . (1988). Nursing Research: Theory and Practice. St. Louis: Mosby.  87  APPENDICES  88  O  z  U  Q  £ |  13  U cd cu cu  ft 3 £ Q  on  M  °  CA  CU  Cd  •s  •a * c u 4cn3 >  tfl  CCJ  a  o „ u  W OH OH  <  C cu  >  > < 4 3  S * 1 CD TJ  o CA  fi  <u o <  1  ' '' O  a1 0  i > g CD >  U  o OH 2  2  s  a  ^ o « S 2 .a *s  5  e •*  o  cn  o CD  CU  O Ii <U  a.  cfid O o  O  e  o fi  CU  00  >v  c Sd 3 CD  < .fi  CD  CD  O  CD 43  RT  S3 2 fi O O cdH O O fi 3 CD  'S. > < CA  43  43  Qrl £H  2 O 2 2O cd fi o 5 fi H 6  g .3 6  o 4> ^ f-  ^  3 O -ri ?^ ,fi .52 Ccu ' u 2 CU CA  .3 o 'c _H CA fi  CD  fi o  00  fi  T3  cd  S* O 3 >-,  S cd73 _  ed <d  •g cu o  5 a ^ 1 s  -HI  4)  3  _  W  " °  tu „ „  •S  43  a> h  X Q  >. •3 $  00  o o sft C § £  i  CA  O  cu  cu §  CU  <A CL) O  S i I•aS 1„  1 S  2  £  O cu  CU -^3  1•  S s  O •o  4  >  •a Q  43  B o cu _r  cd •i  00  CA  —  O CD CA CD  43 T3 CD  3* O fi fi o 00  I 8 cd  «3 g O  CA  *  43  I  s  •§ 3 C cd o a cu -a o g. 3 cu3 c u c u 43 $ ° H & s .2 c/i  \r-J  CA  CA  O «v fD  CA  S; o > w u i:-  >  -— &  o  CA  cd  >o 1•S 6 CA  CD  CD  O 2 cA« C 4*S CU  CO  43  ° "S CD  "3  fi s  U :fi i n C I Z cu .£ pq O td < •s S3 .2  w 3 o •5 3 Di .fi 73 -a < cu cd u 43 5 BC 2 fi J 731 _ S wft < W  w  O cu cu  •J3  BC  2  •J  cd »—i  Di O  < H O  E |  j? •S Sfi CD  3  43  cx  3 S, O •a CA o g CU  Di W  O  43  >-.  O  c  3 o Si 1 CD  ex, >i TO «  O  eu on  O  BC  ^  CA  3 43  89 1 °  3 O  o.  3 oo  D -  •5 C4-H  o CD  XH  3  1  CD  CD  43  <  3 o  CD ft ft  2  •a J3 CD  3 O co  a o 3  o  C3  a o  1s  <2 S o  CO T3  o  3 o  .3 la  c  CD >  >>  73 t?  CD > CD  CD  x.  CD > CD  X3  o CO CD  431 < > 3  S3 o  -g '>  CB JD  o  75  CD  CD  X.I  a  u ca o •a3  co  CO  3 cr  UH  CD §<  'cB  3 O  cr •a a  CD  3  cr o  CD CJ CD  X!  CD  cB X  00  a o 0) X!  H  •s  3  CD  o  UH  ft o  CD  CD  ft  CB OJ  u  >< w >  f  5 o a £ w OH  O  w PH  o o  o 43 (3 O CO (3 O  UH  CB _CD  O Q  73  H on Z W W H X  < w z z H o <C X VH3  ow o  O  3 O >, 43 00 3 o  XJ  CD  •g  '> o  CJ CD  CD  >  CD > CB  43 3 O CB  •s  5  a B  •8  w ca  <j  CD  o ca 0  rCD  1  J2  I—(  <  •a  c- >> © 2  3 O  o 7O3 B3 « O CO  CD  2  o 3 O i n 5 2 CB  ft ft  CD > CD  z  H  "3 3 o  -a CD > '53  73 ta  UH  .3  W H  *}  XH  •3  o  ••-!  CD  CD  O 3 Z O  * >. CD  CB ft  >, CD  S3 •§  90 Z -3  3  O  -  a CU CA  2 5  z  c-  CU  •o  CM  CN  5  a <u  6£ 2 « fiu fi c CA o cu  4M  •4  CU  73 -a  •3s.«° o >, 3o a o 3 a  •3 € o  CO  c e o  o  3  W5  cu cu  fo -3  .2  S  CJ  •al  c 3 o  '•3 3  XII o M  C«  fi  9 2 >  CO  CN  3  to  cu  •§ t  -3  £ cu CA  T3 CU CU 3  73 CA  "fl  -3  3  •a  CTJ  3  a 3 .3  •3  <  a | s i ca.  ^  s 3 «s Z  CU  .3 -4—* 1=1 cu cu Cd - 3  Q  CA CyM  cu To3  t*3  cu cu  o  « S  PM  3  cu CU  oo 3  O  o l-H  < S3  fi 3  o  s  o  - 3  Ml 3  CU  CA  g  cd cu  O a pq PM  Q  CU  cu  fi  a  MM  73  cd  ctuo cjr, c u ^3 00 <->  D  <O ><  o  X  H  •MJ CA  00 3  T3  CA  CS  S  73. x CU  MM  o ed X>  •a CU ,1>  "M  O >.  CM 3  O >v  CU  O  •a cu  cd  •B  O !Jj CA cd cu o -°  TI  >>  M  3 o o  cd  CU CA  73  C> ""'  cu JS  CM  o  - 3  S «  cu  1  >.  O >v  00  O  3  fi 3  cu >  o  3  3  .3  H U o  ed fi 3 O cu  H  Z pq  PM  s  CU CA •S  w J  §2 a i  o  JM  cu  o  u o  2 to > '5b •a o .3 o  00  o  0 o  o-  -S .3 I 5 .3  1/1  3 t -MJ  CA  - 3  ' < Si cu c> "2 7 3^_§ X 3 1)  3  a  5 c^  •13  -  00  32  t  s •a '-3 o  91 <  <  w  cd  o a z -a,  <  •S u 3  5 3 6 C3 5. O  1e s£  z  3  o  *  XZ u  5 I •8 =>  3 O O  u. £  CM  CN  43  s _o **-»  2  > m .52  CN  CN  co  co  co  uo  ir>  u->  in  VO  VO  VO  VO  co  S is  CD  CN ~  u  E -a G  O 3 s o  43  43  CJ c3 o  •3 s  3 ^ ca 2 73 in a a  CO  O 3  <£ 6  o  cj  o  '•"3 33 T3  S  2 43  3  O  43  g  a * § a  CD O CJ Cu  CD  o —r 3 CD 00 S 8 •3 ° 43 3 tO n c O '5? o O CD H  3 a s  s  ca „  .,  tn <2 a c oo 3 -a O ea •3 O  4?  o* < D  3S  o ..  -3  1 u. 3  o  ea 00 3 O CD >-> T3  3  S 73  o o ca  43  o >, a.  CD  3  O  43  ca o ea  2 5 3O ca ~i aj  CD CD  il  a  3  £ ° o aoea2 S3 4 3 O 1H  43  44 t-i O 3 O  •s -a  CD  2 43  o 3 O >. 3  O  CD  ^ CD CD JJ  CD *J 3  > to p CO  o  43  o  =OJ CD CJ O « "3. £ .3  •s OJ O .J  CJ  S  H  O CD co 3 co -a O  "S•• "ea  N 3 3  fH  o  CCO D  o oo CJ.2 OJ ex  OJ  -s 3  o w  73 .a CD O CD a S3 •3 CD ° *- —r ca CB ea CJ O OJ p  2 s  -a  a  CD  •3  CB  3 •2 .3  •i §  .1°  .3 S  00 1-H  •a I OJ tJ 4=  O 3—' CB .22  43  CD  > 2  %  CO  -3.5 CD co 4 3 ra  ca  43  §  l l  43  ^  00 "O  • caCD CD  0  43  00 3 '§  CD > CD  cB  o > • i-H  B3 o * a co .3  43  43  2a3O CD  c3B &. CD O CB  £  43 ^  O cB CO  CD O ^ -3 CO C B  3  B  92  - -a  o a z '-s.  o  o  o  o  o  o  o  o  o  o  CN  CN  CN  CN  CN  CN  3 o  -  z  CO  3 d> Cu Cu  co 4=1 3 O  'i  3  cn  cn  cn  cn  cn  cn  cn  cn  in  m  >n  <n  m  m  in  in  VO  vo  vo  vo  vo  vo  r-  t>  r~  r-  r-  o  3 CD > CD  CO g  vo  vo  •3 3  hin  CO  3 O  -5 _o  CO  roup, N Iton, Oi  4)  O  0C 1  1  5  §  ON  s «  Q H Q Z w s H w u *  C DH 3 co 43 3 O -3  g o  >i CD  «  I-H  Q  g  3 CD 43 o  PH  g 1 « c? O  CO  O  ^  > J 13 .2< S  O  "§ | CD £  § i p.  .3  < ° O H  eCD  O  o 3  CD  3  O  O  o  CD  gl-t  3  3  O  o  fin;  s o itn  "EH  OH  42 £•  CD CO C J G 43 UH CD B _>-, 3 o UH g H—' , B O3 >> C Cu CB UH UH O CO CD CD >. •s -s  CO  00 3 '3 •3 CD  3 _f0  o  CO  O  test  N  3  CD 43  3  3  •s3 O  3  cCoD UH  CD -s aboul  <S  hen you ests  UH  O  hild  .H Q ,S <  T3 CD 3 o  ex yo  «5  CD  S  o  — II H  3  -3 c CO CD C D d C B l-i CO I -H C D C D CB UH "cB C OB  ze tha decis:ion  cB 3 CB  z  CD  ">  what ch ild in  •§  en nen  >>  CD  •a 3° oo •a o o C Ds UH  >• o  m  VO CN  3  s i  • 5 co •r CD s « o t-  * 3 CD „  > 2 §^ OH  o  CN  CN CN  cn  CN  CN  CN  r--  CN  CJ  93 <  a <  „ -8  oo Z =3  u  3  a '.2 Sa I. o  O  >-.  a  co a  i_  a  z  CU  a, 43  CN  CN  CN  CN  CN  CN  cn  cn  cn  cn  cn  cn  m  in  m  m  in  in  \0  VO  VO  vo  3  O •a  D S. S o 5  a  cu > CU  fi o  C/5 43  o 3  =4 O -3 T3 3  O  3  3  O >. CU  cu  o o  3 cu  cd  ed o  r> o  cd eo cd  sa  fi ,o  3  cu ed fi  7o3  OH  U  oo  00 3  o  CU IM  3  o  CH  cu -3  W  3 °>  Q  3 4>  H  -3 O -3 o fi -S 3  CH  <  :  z d wx H n  x ^  5 <*  .? s >  3  i> cu  o cr3 o cu 3  3 <*'  s J  cu 2 >  o  2 a S "f  co cu O j,  3  _o  43  fi .9  ed  a  c co d 3cu cu 3 • O 4y 3 a 3 S tS a « O S> 2 « g  g a  O -3  •S oo  cd  > -o  > " S o  -H  O >-> ed  cu  *a  •a .3  3  00 3  1-1  -*—» +•-» I—I  3 ^  5 o  fi 8 3  OH  e-^  « o  eo 3 cd ed O  s  0)  o -2 £ - 3 cd  col >, St  -3  •S "EH 43  PH  cS  D-a  _0 To "0 > « T3  33 43 O  o — ^ cd --j =d  fi I P  *H  MH s  43  3 2 °  cu 3 O & cu >  eo fcj  0  CN  O cn  CN cn  cn cn  a fi  c3 •a  OH OH  fi co  U  •3 »• cu a H-»  co cd fi  cn  ed OH cd cu  1 £ O co 7u  o co  "BH  3 O  3  'S  3  oo CN  O fi  •s § cfiu  CO  «-»  co  <d  fi o  OO  O 3 -S 43 cd 3  * z  2 oo 3  O =  -s i  CO O  w E:  Vi  CU  cu  =5  Q  3  > 'ob  3  3 O >.  xt  -3 5  00  11 3 O  O  OH  C+~H 3 O >>  I  a >« a cu — 3 a VO m cn cn ed cn a ^  94  z° •=a  3  o >*  O  -  CO  a <u  ^ $  Zu  & CM  J3  3  CN  (N CN  CN  CN  CN  CN  cn  cn co  cn  cn  cn  cn  •*  •*  •*  in  m  in  m  VO  VO  VO  VO  O  3 cu J>« oj -a  .2  E  -3 o 3 m  co  V£>  VO VO  6  in  o J3  •a  CU -3 x) cu cu 3 u  g >->  C L) fi CCJ 13  05  .2 'fi  CM O  O  fi  OH OH  cx  •3 < .2 Q .a <  1  3 O -3 cd 3  u  15  cd cd cu  6  <o o_  O cA ^>3 Joo •g .2  o o  «3O2« § 2  z  ^ 1  & .  *> 5 '5 <* s  O 5 \ 3 C7\ « 2 S  a  O T3 O  cd c u 6 cd0 T3 3  CA  3  3 3  cd c u -3 cd  cu  cd  3  cu  -3 o fi 3e>. tJio.2c-  3 o  -3  _u g  O  MT  OH  cu H CU M C aU  ^a  3 i> o -  JO  CD  OH  3  •§ "  o  u Jc3  MM  §  CA CA  O  O  1,3  w  OH  CM  00  cn  ON  cn  O  CN  2 a  2 cf cu cod O  cu cd > a  -3 J3 a 3 3.& o 1 a fi J 3 >-> cr •r; 3 ( 5 0 ii cu CU 3 2 r 3 fi so 9 § 3o 3 S3 |S -3£ cu o o cu CU 3 cu 2 S2 w> cu 3 '> >2 o a CO m -3 O O - n-1 •—! ^  cd cd cd •3  CA  A  u  3  cu o fi  Cd ^  -S  00  13 o  «2  cn  cd CA CU _> CA  2 -3 "fi o. 33 3 fi cd 3 3 fi O  O CA  O JO  O  o  O CA  C U OH a  OH OH  o  3  fi MMCA cu cd  5 § a  1 a  3  •*  cu  cu 23 § 00 o >n  95  3o  u 5 •ao CO _c 0 o Ci s o. c > o •§  •a  s I c£ o O "> E -c  J3  3 o  § UH  o  ami  Ont  00  J3 Z -3.  •a ra 3 d  CO  3cu Cu  ex  & XS  >>  I-*  3  CL,  'X5  CD  a  x< CU o g  CU CU •s  u-.  3  oI-H cu> 3 -3 O CS -a •* a  DO  Res:ear Mc:Ma.ster  z >.  S  O 3 ,cu ra  CN  CN  CN  CN  CN  CN  CN  cn  cn  cn  cn  cn  cn  cn  cn  -<t  •=c•u 1  0  fj  CN  3cu >  ra  ra ral  3  m  m  m  m  in  in  m  in  VO  vo  VO  VO  VD  VO  VO  VO  1  c- O  <H-H  cu  M  ra 2 8-  C3 cu e  08 E OH  z W cu  a -s  < corn ra  S I,CcHu x O—i U  H  j <c tq X S  2"  < is H EC 00  O X  H J <  W X  >  Pi W O U J W < Pi O  EC o ><  oo O w X Pi w UJ  x  H X w  cD o C ora oo O u  CO UH gO  3  <+"H  f ra co  CO 3O  CD  •s T3  *LH  a >  no  U  ocu  X  •* -°  d  CD  <D„ CD -3oCD  DH  o  abl  <U  '>  ra > ra  -*-»  8  x> a 3 ^ s „  2 fj eg ^ 73 .3 i-H  CD  ,  &•* °  01  <  U I1  £ -s  oo  ov -a-  o m  3 3 O  >H  5?  °  SH  3  S  1 I x> o  ra xi Xi CD ccuo _ra  " oo a .3 * cu  ra co ao "-  C3  1H  1>  • CO  "ra jo  3 CD S  § 3  O  «C  § a  2 ° -° O C  XH  .O3 ^3CD X H CD 3 U 0 l-i  § a  H  CUH U  &  CD X H CD  > U  J3 <3  7C3D 33  i-  ct y  1  VO  3  O  >-. CD  oo u W O > Q ra H w 33 oo o -— Z o ,o UH ra N-H w >• 3 C O H U ra X C DX3 Z : > w ra o3 — t vJ Upq JS CO  IX s > pq o < U oo  OO  ^ 3  tion klet,  < z <  J3  °>-> 3C D .  CN in  > ^  ^  UH  Cu >, >^ 3 o  W  cn in  I  8 §  96  z -a 3  o  >,  u. g  o .£> s  CD OH &, CO  X5 3  _o  CO 3d  C O C >D •  >  CD CD  ll  3  cj  O  3  •3  =4 O X5  CD 3  C D OH o  •3 3  CO  •3 H  O  |  tS  -3  cj  CD CD •5 CD O PH C D PHC D > 3C O '•3 UH 2 | 3  OH  OH  co <u Z oo  O  <  , co •3  PH OJ  ti o  PH  ••••  O C D OH  UH  CD  3 O  &  £ 00 pq pq U O Q PH E-H pq Z 00  < X 5  2  CD  00  CD  «S  CD CO  a  CO  CO  w-H  S o 'p  C 3-O a  t— U  &o  •3  r-j 00  .3  00  nera era  CD 0 0 CO.3 0D 0 CD C J O C •C 3D C •a D C O 3 lr '> '> CO O <a C >D 3CJ o X> O .3 DH o CO o oo CJ I—i O H ,  UH  Ti-  UH  > >n n  3 O  in  CD •s CD o  -s  UH  ta a  o  CO  OH  CO  CD  OH  r  UH  :  pq  1  -o 3  l  Q  O  4-H  o-  C D 00 c— tiC OH D'i-H •3 U oOH UH  UH  ' w — H u X pq Z  'SH  o C O 3  X3  >  H  ,C"3  r the ntire  c C 0Liy) ~u oo > _J 1 .2 3 3 " 3 Z o  X Pi w pq aX  3  ties  u §  O or) > O pq CM  _>-,  UH  opp tion'  =<  — I I oi < H D  o get nforr  (8 « < .H a  CD OH CO C OC O 3 O  pq  CJ  da  u  O  o  UH  adv ice on othe r p  D u  obtai  SOU o C D o3 3  > 04 pq  X  3  UH  ent net  H < W pq  n ava able .aboui I cost or as sist; sexua ty) a;  o  3 O  co  z  3 CD o ,3 w <  •5  3 O >>  CO UH  OH  _  D8 so3 i ~ C  00 OH  o  B B Ix 3o o  UH  PH  ••••  3  1-1  o  •  •o  •3  B to  •3  CO  XS 3  O  a< < z <  u a  •3g Ia  Q W H W HH  O U t  OH  oI  O U  c2 S  ri °  8s OO  Q  w  pq  OH  OH  o <:  H  pq  HH  1 — 1 o  < PH  o  u  w  00 W  Q HH 00 H O PQ H  < X H U  w  K U  oo  < W h-l OH 00  H  Z w  S  o u z  < h-H  H Z  pq Q HH PH  z, o u  o ><  100 Appendix D: Socio-Demographic Sheet Age of Parent  • Under 20 years • 21-30 years • 31-40 years • 41-50 years • 51-60 years  Language Spoken At Home  • English • French • Other  Family Type  • Single parent family • Two parent family  Number of Children in Family  • • • •  Family Income  • • • • •  Relationship to Child  1 child 2 children 3 children More than 4 children • Less than $15,000 $15,000-$29,999 $30,000444,999 $45,000-$59,999 $60,000-$74,999 More than $75,000  • • • • •  • Natural mother Natural father Adoptive mother Adoptive father Other guardian Both parents completed the form jointly  Educational Level of Parent  • • • • • •  Elementary school Some high school Completed high school Some college/technical training Some university Completed university  Child's Age  • • • • •  Less than 2 years of age 2-5 years 6-12 years 13-16 years More than 17 years  Child's Gender  • Male • Female  Child'sDiagnosis Reasonfor Admission Number ofPrevious Admissions to 3A Ethnicity  .  

Cite

Citation Scheme:

        

Citations by CSL (citeproc-js)

Usage Statistics

Share

Embed

Customize your widget with the following options, then copy and paste the code below into the HTML of your page to embed this item in your website.
                        
                            <div id="ubcOpenCollectionsWidgetDisplay">
                            <script id="ubcOpenCollectionsWidget"
                            src="{[{embed.src}]}"
                            data-item="{[{embed.item}]}"
                            data-collection="{[{embed.collection}]}"
                            data-metadata="{[{embed.showMetadata}]}"
                            data-width="{[{embed.width}]}"
                            async >
                            </script>
                            </div>
                        
                    
IIIF logo Our image viewer uses the IIIF 2.0 standard. To load this item in other compatible viewers, use this url:
http://iiif.library.ubc.ca/presentation/dsp.831.1-0087675/manifest

Comment

Related Items