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UBC Theses and Dissertations

Evaluation of an educational package for families in British Columbia whose children have been recently… Massey, Cathy Lynn 2002

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E V A L U A T I O N O F A N E D U C A T I O N A L P A C K A G E F O R F A M I L I E S I N B R I T I S H C O L U M B I A W H O S E C H I L D R E N H A V E B E E N R E C E N T L Y D I A G N O S E D W I T H E P I L E P S Y By CATHY LYNN MASSEY B.S.N., The University of British Columbia, 1992 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE STUDIES (School of Nursing) THE UNIVERSITY OF BRITJJJH COLUMBIA A p r i l 2002 copyright Cathy Lynn Massey, 2002 U B C Special Collections - Thesis Authorisation Form Page 1 of 1 In p r e s e n t i n g t h i s t h e s i s i n p a r t i a l f u l f i l m e n t of the requirements f o r an advanced degree at the U n i v e r s i t y of B r i t i s h Columbia, I agree that the L i b r a r y s h a l l make i t f r e e l y a v a i l a b l e f o r reference and study. I f u r t h e r agree that permission f o r extensive copying of t h i s t h e s i s f o r s c h o l a r l y purposes may be granted by the head of my department or by h i s or her r e p r e s e n t a t i v e s . I t i s understood that copying or p u b l i c a t i o n of t h i s t h e s i s f o r f i n a n c i a l g ain s h a l l not be allowed without my w r i t t e n permission. Department of The U n i v e r s i t y of B r i t i s h Columbia Vancouver, Canada http://www.library.ubc.ca/spcoll/thesauth.html 4/17/02 Abstract This descriptive study was designed to invite parents to evaluate the usefulness of the Epilepsy Education Package they received subsequent to their child's diagnosis of epilepsy. The Evaluating Printed Education Materials ( E P E M ) Model (Bernier, 1993) was used to guide the development of the educational resource package. A n evaluation tool was created by adapting the Client Satisfaction Questionnaire (CSQ) developed by Daniel Larsen et al(1979). The population of interest was families from the inpatient neurosciences unit and outpatient neurology clinic at British Columbia's Children's Hospital which is a part of Children and Women's Health Center of British Columbia as well as from the Epilepsy Society of British Columbia who received the Educational Resource Package when their child was newly diagnosed with epilepsy. Evaluation tools were sent to 93 families through a mailed out evaluation tool containing 39 questions in which 13 utilize a Likert scale, 15 closed-ended questions, and 11 open-ended questions as well as a demographic tool containing 10 questions. Telephone follow-up and interviews were done with 48 of these families. Analysis of the data was done descriptively. The percentages for each Likert-scaled response and closed-ended question were calculated. The open-ended questions and telephone data were analyzed using content analysis. Patterns or common themes were identified and responses categorized into these themes. The study's findings indicate that most parents read and found the educational resource package helpful. Recommendations were given as to how the package could be i i improved. The recommendations included adding extra suggestions for resources and supports for families, such as: information for siblings, websites, and an annotated bibliography or reference list for extra reading. Implications for clinical practice and education as well as research is included. i i i Table of Contents Abstract i i Table of Contents iv List of Tables vii Acknowledgements vi i i C H A P T E R 1 Introduction 1 Background to the Problem 3 Clinical Practice Context 6 Statement of the Problem 14 Purpose of the Study 15 Research Questions 16 Definition of Terms 18 Assumptions and Limitations 18 Significance of the Study 19 Summary 20 C H A P T E R 2 Literature Review 21 The Impact of Epilepsy on Children 21 Family Centered Care 24 Stigma and Epilepsy 27 Approaches to Patient and Family Education 29 The Evaluating Printed Education Materials ( E P E M ) Model 30 Summary 33 C H A P T E R 3 Research Methodology 34 Research Design 34 Step 1 Designing the Educational Resource Package 35 Our Educational Resource: Part of a Broader Educational Program..35 Predesign of the Resource Package 36 Design of the Resource Package 39 Pilot Test of the Resource Package 41 Implementation/Distribution of the Resource Package 42 Evaluation of the Resource Development Process 46 Step 2 Developing the Evaluation Tool 47 The Evaluation Tool 47 The Demographic Data Tool 52 Reliability and Validity 52 Research Procedures 53 Sample Selection 53 iv Evaluation 54 Telephone Fol low-Up 55 Ethical Considerations 56 Design Points 57 Summary 57 C H A P T E R 4 Analysis and Presentation of the Findings 58 Analysis Procedures 58 Likert Scales 59 Closed-ended Questions 60 Open-ended Questions 60 Profile of the Participants 60 Description of the Sample 61 Rate of Return 61 Presentation by Research Questions 62 Research Question 1 : (Learning Objectives 1-7) 62 Learning Objectives 1 and 2 62 Learning Objective 3 63 Learning Objective 4 64 Learning Objective 5 66 Learning Objective 6 67 Learning Objective 7 69 Research Question 2 72 Research Question 3 74 Research Question 4 76 Telephone Follow-up 78 Critique of the Tool 80 Critique of the Evaluation Process 81 Summary 81 C H A P T E R 5 Summary, Conclusions and Implications 83 Summary of the Study 83 Summary of Participants 85 Conclusions and Discussion 86 Research Question 1 : (Learning Objectives 1-7) 91 Learning Objectives 1 and 2 91 Learning Objective 3 92 Learning Objective 4 92 Learning Objective 5 93 Learning Objective 6 94 Learning Objective 7 95 Research Question 2 97 v Research Question 3 98 Research Question 4 99 Implications for Clinical Practice and Family Education 100 Resource Package 100 Implications for Research 102 Evaluation Tool 103 References 105 Appendices Appendix A : Cover of B . C . C . H . Educational Resource Package 110 Appendix B : Cover of Epilepsy Society Educational Resource Package 112 Appendix C: Sample of Stacked pages in Educational Resource Package 114 Appendix D : Educational Resource Package Content Flowsheet A 116 Appendix E : Educational Resource Package Content Flowsheet B 118 Appendix F: Educational Resource Package Prescription Sheet 120 Appendix G : Evaluation tool 122 Appendix H : Cover letter 129 Appendix I: Reminder letter 132 Appendix J: U B C Ethics approval for study 135 Appendix K : Childrens' and Womens Ethics approval for study 137 Appendix L : U . B . C . Ethics approval for amendment 139 Appendix M : Childrens' and Womens' Ethics approval for Amendment 141 vi Lis t of Tables Table 1. Research Questions and Associated Questions in Epilepsy Education Package 50 Table 2. Demographic Data 61 Table 3. Learning Objectives #land #2 62 Table 4. Learning Objective #3 63 Table 5. Learning Objective #4 65 Table 6. Learning Objective#5 66 Table 7. Learning Objective #6 67 Table 8. Learning Objective #7 69 Table 9. Receipt of Educational Resource Package 72 Table 10. Usefulness, mode of receipt and review of package 73 Table 11. Research Question 3 75 Table 12. Research Question 4 77 Table 13. Telephone Contacts 79 Table 14. Combined Questionnaire and Telephone Contact Data 79 vi i Acknowledgements In order to try and better serve the families in British Columbia whose children live with epilepsy I would like to acknowledge the commitment and caring of the nurses in the neurology outpatient clinic for all the time and effort they put into creating an educational resource package we can be proud of. I would also like to acknowledge the British Columbia's Children's Hospital Telethon Projects Allocation Committee for granting us the monies to print the first 1000 copies of the educational resource package. I would like to thank my thesis committee, Judy Lynam (chairperson), Connie Canam, and Anne Wyness, for their encouragement, support and patience in guiding this project to its completion. ,1 would like to thank my family and friends and colleagues whose constant support, encouragement, and belief that this project was possible enabled me to "keep going". I would like to thank Debbie for her unending editing, typing, tabling, and overall love and support that enabled this project to reach its conclusion. Most importantly, I would like to thank A m y and Emi ly who have had to endure many times where Mommy's thesis took precedence over more "fun" activities. Their love, support, patience, and personal sacrifices for this project are acknowledged and treasured. I love you both and look forward to having more free time to spend together. Finally, I would like to thank all of the families who gave of their time in either completing the evaluation tool or in telephone follow-up. Without their enthusiasm and support this study would not have been possible. vii i Chapter 1 Introduction The care of children in ambulatory care settings has become a growing trend in health care delivery. This trend, coupled with the significant growth in numbers of families managing complex care of their children at home, has drawn attention to the need to examine how adequately the concerns of families are addressed in ambulatory settings. The changing demands on children and families have prompted a shift in the traditional roles and expectations in an ambulatory setting. A recurring concern over the years has been how we, as nurses, could better our attempts at ensuring children with epilepsy and their families receive up-to-date, relevant information about their condition and the supports available to them in the community and develop skills and strategies to advocate for their child. As nurses in an ambulatory care setting, one of our primary roles is the education of the families of children with epilepsy as a means of enabling them to deal with the sense of loss of control over the chronic illness and the responses of others to it. A practice goal is to foster empowerment. Educating families is one of the ways that nurses help families better manage their chronic illnesses and decrease some of the stresses that they experience (Boise Heagerty & Eskenazi, 1996; Canam, 1993). While stigma is common among chronic illnesses, a diagnosis of epilepsy carries with it unique characteristics such as the constant worry of having another seizure and the worry of mortality in association with the diagnosis (Baker, Brooks, Buck & Jacoby, 1999). A feature of living with chronic illness is isolation and a feeling of loss of control (Thomas, 1987). Education plays a role in decreasing these stresses 1 (Aytch, Hammond & White, 2001). As mentioned earlier, one goal of educating families of children with epilepsy is to foster empowerment. This empowerment is characterized by an understanding of the illness and the sense that the family can deal with issues that arise in illness management. Empowerment is also associated with a capacity to challenge others' misconceptions of the illness, should these arise. Duncan (1996) argues that fostering empowerment in individuals and groups enables them to gain control over their lives and is essential in health promotion. Educating families is an important part of empowering them (Gershenson, Quon, Somerville & Cohn, 1999). For families in British Columbia, the issues associated with a diagnosis can be further compounded because of geographical isolation. The province has a large, geographically dispersed population. It is difficult for those in rural areas to access information and support groups close to home. One challenge of educating families of children with epilepsy in British Columbia is to reach those who may never come to our tertiary center, British Columbia's Children's Hospital (B .C.C.H. ) . Informing families of the supports available to them in their own community is one way of decreasing isolation and associated lack of support. The practitioners in the outpatient neurology clinic at B . C . C . H . saw the need for a resource that would be accessible and useful for all families in British Columbia whose children were diagnosed with epilepsy: The aim of this resource was to: -help families cope with the diagnosis -provide a strategy to decrease stigma -provide a strategy to increase the family's sense of control 2 This descriptive study uses a post-test design (Burns & Grove, 1997) to evaluate the usefulness of an educational resource package given to families with children newly diagnosed with epilepsy. To introduce this research study, the balance of this chapter presents the background to the problem and purpose, the definition of terms, the assumptions and limitations of the study and the significance of the study. Background to the Prob lem As a nurse in an ambulatory care setting in a tertiary care children's hospital, much of my work with families is focused on helping the family manage life at home given their child's diagnosis of epilepsy. The ambulatory area of nursing where I work is neuroscience nursing, and the client population is comprised primarily of children, who have epilepsy, and their parents or caregivers. One area of concern for this population is the lack of up-to-date consistent information on epilepsy. This concern is voiced by families regardless of where, or by whom, their child's diagnosis was made or where on-going care is delivered. Pellock (1996) states why education is so important when it comes to epilepsy. The goals of therapy are to stop all seizures while allowing no side effects and to promote the best possible quality of life for the child. Through education and advances in the study of epilepsy, the use of new medications and open discussions of the disorder, many people now find their entire lifestyle much improved, even i f their epilepsy continues (p.8). Patient education is an important component of empowering individuals and their families (Gershenson et al., 1999) and I challenge the assumption stated in Caraher (1998) that, "patient education is often viewed as the poor cousin of health promotion. It suffers from being viewed as a less skilled form of health promotion" (p. 49). Educating families is inherent in promoting health. If education leads to the understanding by children and their families that they have a role to play in managing epilepsy then it is a form of health promotion. One possible benefit of education is improved quality of life (Glanville, 2000), but a secondary benefit may be, ...patient education ultimately reduces health care costs by earlier detection of disease, fewer medical complications with chronic illness, less hospitalization, and perhaps even fewer office visits (Glanville, 2000, p.57). Glanville (2002) goes on to assert that in looking to the future it must be acknowledged that health care providers wi l l be expected to, in a much greater way, "promote and maintain health" (p. 59). As health care providers in a tertiary care center it is important that we heed this trend. Another concern for this group of children is the stigma that is attached to a diagnosis of epilepsy. It is hoped that by educating the child, family, and their caregivers, that we, as nurses, wi l l begin to decrease this stigma. Research has indicated that a sense of mastery is the single most important variable in alleviating family burdens. Families are now encouraged to become involved in support groups, planning, and advocacy, all of which contribute to destigmatization (Lefley, 1992, p. 127). As mentioned previously, the tertiary care hospital referred to is British Columbia's Children's Hospital (B.C.C.H.) which is a part of Children's and Women's Health Care Center of British Columbia. As a tertiary care center children and their families are treated from all over British Columbia, and sometimes from out of province as well as out of country. As a referral center it is realised that, while many children are seen, not all the children in British Columbia with seizures or epilepsy wi l l attend B . C . C . H . As a means of meeting the aforementioned concerns of these children and their families my colleagues and I developed an educational package to be given to children newly diagnosed with epilepsy and their families. The details of its development wi l l be outlined further in chapter three. Although we see many families each year in our ambulatory clinic, the story of the mother of N.S . echoes the stories of many of our patients and their families. The mother of N . S., a frequent visitor to our clinic described how alone she felt until we put her in contact with her nearest Infant Development Center and Seizure Support Group. She contacted the group organizer and indicated that simply speaking with her made her feel better. She then attended the group regularly for a number of years and felt that it was a place that she could share her experiences and concerns amongst those who understood. It was also a place she could go and find out about resources that were available to her if she needed them. She recounted that the group enabled her to better deal with the challenges that a diagnosis of epilepsy brought to her son and her family. Not knowing how to deal with the challenges had given them a diminished sense of control in their day-to-day lives. Her story draws attention to the importance of information and support from professionals and others living with the diagnosis. When a child is diagnosed with a chronic health condition, many families find that their family functioning is in a state of disequilibrium (Thomas, R., 1987; Jessop & Stein, 1989). In order to meet the need for patient and family information on epilepsy, it was decided that an educational resource package would be developed to reach not only those children and their families that we see at B . C . C . H . , but also those children in British Columbia with epilepsy that we would not see because they would be managed solely in 5 their home community. In the B . C . C . H . ambulatory clinic there are nine nurses who work within the neurology program, including myself. We were all involved in the development of educational materials which are the focus of this project. Each of us has different nursing education backgrounds and experiences and each has contributed different perspectives to the compilation of information. "As the group of health professionals who spend the most time with patients, nurses play a central role in establishing and evaluating the quality of printed educational materials" (Bernier, 1993, p. 44). This sentiment is echoed by Fitzgerald and Illback (1993) who state, "nurses are increasingly involved in leadership roles for the planning, management and evaluation of health care services" (p. 39). A s nurses in an ambulatory setting our role is to link with the nurses and families on the inpatient unit as well as with the community resources for these families. In this way we are best able to provide a continuum of care. Part of this continuum is empowering families to cope by educating them so that they are more able to cope successfully with the condition and, in turn, may help educate those in their immediate community (ie. friends, teachers) as they are often the best advocates for their child. C l in i ca l Practice Context "Human beings have three fundamental health needs: 1) the need for health information that is usable at the time when it is needed and can be used, 2) the need for care that seeks to prevent illness, and 3) the need for care when human beings are unable to help themselves" (George, 1985, p. 247). We, in the clinic, working as members of an interdisciplinary team with families, echo these fundamental aspects of nursing care: 6 1. The family needs accessible up-to-date consistent information on epilepsy and its management and social ramifications regardless of where, or by whom, the diagnosis was made or where on-going care is delivered. 2. The family needs knowledge of its potential network of supporting resources and how to access them. 3. The family needs to understand where they can go to get the information that they perceive they need. We have organized the way we provide care in the clinic on the assumption that by making the staff in the clinic, on the patient care unit, and the families and caregivers in the home and community more informed and united, we are better able to meet the needs of the families. The first issue faced in developing the educational resource was to determine a way to deliver the information to the families and the communities. A s a starting point funding was solicited to assist in program development. Once funding was obtained a teaching package was developed and printed. Coincidently, the British Columbia Epilepsy Society (Epilepsy B.C. ) had just begun a "Kids Being Kids" project and were looking to develop an education program. They are a non-profit society available to people with epilepsy and their families, teachers, friends as a source of information about the condition. After our educational teaching package was developed, we were able to collaborate with the B . C . Epilepsy Society and develop a way to reach families province-wide. This collaboration wi l l be described in chapter three. The educational packages that were produced via this process have been distributed to families with children with epilepsy since September, 1998. 7 The client group in the ambulatory neurology clinic is made up of children, from birth to seventeen years of age who have various neurological problems, and their parents or caregivers. According to Dr. A . H i l l , Division Head Department of Neurology, (personal communication, March 2, 1998) in the ambulatory neurology clinic at B . C . C . H . we see an average of 4,000-5,000 children a year. That number has remained constant. Of that number, approximately 40-50% have epilepsy or seizures secondary to another underlying neurological condition. The neurology clinic, as part of the Neurosciences Patient Based Care Unit (P .C.B.U.) , is also part of a much bigger population, that of the entire hospital. B . C . C . H . is a 202 bed facility that cares for over 130,000 children each year, primarily in the ambulatory care setting. A s a provincial referral center, rare and unique health concerns are dealt with, and relationships with families are forged which wi l l often last for many years (Sutherland Boal , 1997). The mission statement of the hospital states that "British Columbia's Children's Hospital wi l l serve as the major child health resource center of the province and wi l l provide leadership in the areas of clinical services, research, education and health promotion" (Annual Report, 1997). B . C . C . H . advocates a philosophy of family-centered care which emphasizes the significance of understanding the needs of children and families as a basis for developing collaborative partnerships in caregiving. The hospital is committed to educating the public and communities, patients and consumers, and health care providers and students. A s Liisberg states, (as cited in Hartmann & Kochar, 1994), "the basis for good health is a well-informed population" (p. 103). The Neurosciences P . B . C . U . consists of the outpatient (ambulatory) neurology clinic, 8 a 10 bed inpatient neurosciences unit, the meningomyelocele clinic, the neuromuscular diseases clinic, and the neurosurgery clinic. A l l totalled, we are responsible for approximately 7,000 patient visits each year (V. Crompton, Neurosciences P . B . C . U . Patient Services Director, personal communication, October 5, 2000). In the neurology outpatient department which includes the ambulatory neurology clinic, we have three neurosurgeons, nine neurologists, a psychologist, three neuropsychologists, a psychiatrist, a dietician, and nine nurses. In addition, as B . C . C . H . is a teaching hospital there are various numbers of neurology fellows, residents, medical student interns, or student nurses involved in the program at any given time. While we do not follow a single model of nursing, our P . B . C . U . prides itself in enacting the hospital's commitment to family-centered care. In Rosenbaum, King , Law, K ing &Evans ' (1998) view, by focussing on different components of the family we indirectly affect the child (p.4). He asserts, "over the years parents have become knowledgeable consumers and now speak out actively about the types of services they require and how they want to be involved in the process of defining these services" (Rosenbaum et al, 1998, p. 4). We have a parent representative at our P . B . C . U . meetings (held bi-annually) in order to better appreciate their perspective on program initiatives and to hear their opinion when decisions need to be made. We continually offer support to families both in person and via the telephone, and involve families in decisions related to their child's care as much as possible. In this way we recognize Hanson, Johnson, Jeppson, Thomas, and Hall's (1994) view that the primary goal of family-centered care is to include the family as full partners in the care of their child's health. 9 More than 10,000 children and teens in British Columbia have epilepsy (Epilepsy B . C . , 1997) (approximately 0.5-1% of children). Many of these children and teens wil l never come to B . C . C . H . Their seizures are easily controlled with or without medication, and handled by their families, pediatrician, and/or family physician. Even some of the children with epilepsy that does not respond to medication wi l l never appear in our clinic, or not until they are teenagers, having been managed for their younger years in the community. These families come from a broad geographic area, as mentioned above, and, as part of the mandate of B . C . C . H . , deserve to be well educated. Our concern is how we can better attempt to enable these families to receive adequate, up-to-date information about their condition, medications, safety issues and supports available to them. "Patients can only be well informed i f the content of patient educational materials is kept accurate and up-to-date" (Barlow, Bishop & Pennington, 1996, p. 282). One way of providing such information and support is through the distribution of an educational package for families of children with epilepsy and evaluating its impact on families. The goal is that the information provided wi l l help children and their families to better manage their child's epilepsy. These families come from a wide variety of cultures, occupations, educational levels, and each has different motivations to learn about the diagnosis of epilepsy. For those children and families referred to the clinic a nurse meets with the child and his/her parent or caregiver and may also meet with the child's public health nurse. In many instances via telephone consultation we may discuss care and/or seizures with the child's teacher, family physician, pediatrician, or daycare worker. During the clinic visits, the child and his/her 10 family is taught about the child's seizures, epilepsy, the medication(s) prescribed, pertinent safety issues, and what to do in the event of a seizure. Families are also given information about the community support services available, as well as more general lifestyle issues. If the seizures are a symptom of an injury or disease, then the family is taught about that also. Our goal in providing such information is to enable the child, and his/her family as a whole, to recognize, manage, and do their best to prevent seizures, in order to achieve the best outcome from the prescribed medical regimen (Bergeron, 1999). In this way, those of us in the clinic are practicing "primary prevention and health promotion by determining long-term risks to which a client is exposed and prescribing measures which wi l l hopefully reduce the risk factors" (Friedman, 1986, p. 21). Families themselves attest to the importance of such educational initiatives. One mother wrote, "Professional therapists and educators encouraged us, taught us, supported us, and cared for us. We learned about available resources and ways to advocate for our daughter" (Schacter, Montouris & Pellock, 1996, p. 60). In addition to being assigned nurse clinicians or a clinical nurse specialist in neurology for clinic visits, and an outreach partnership program, an additional strategy employed in our clinic to extend our resources to the community is our provincial telephone consultation which enables nurses in the ambulatory clinic to be available to families and health care professionals throughout British Columbia. These consultations involve providing families, family physicians, pediatricians, community health nurses, social workers, care workers, and teachers with support, information and available resources re: epilepsy and its management. For example, one Special Needs Teacher in the community 11 regularly calls me to discuss K . K . , a child we both care for who has a refractory seizure disorder. Besides regular telephone support another approach we use is to hold case conferences involving various professionals working with K . K . The goal of this conference is to ensure all care workers were approaching behavioral management of this child, her seizures, safety, and medication interaction in the same manner. They also provide a forum for collective long-term planning. At the present time in B . C . , other than our tertiary clinic, the available province-wide resources for families are the B . C . Epilepsy Society (Epilepsy B .C . ) and the Fraser Valley Epilepsy Society. Epilepsy B . C . acts as the primary resource and provides families with a website as well as pamphlets, videos, and books on loan. It also has community support programs and information sessions available. While this is helpful, the society office itself is located in Vancouver and not everyone with epilepsy is aware of it. Within the last year, the mandate of this society has been to better serve the province as a whole and so the society has undertaken steps to begin to make communities aware of its existence and its easy accessibility by phone, fax, and the internet. To ensure accuracy of educational material, Epilepsy B . C . has developed a multi-disciplinary professional advisory committee whose expertise in epilepsy wi l l help decide which information is the best to make available to families. The formation of their committee was an initiative taken that illustrates the power of combining resources. Epilepsy B . C . and the B . C . C . H . neurology program therefore can been seen as having comparable goals for families of children with epilepsy. There are a wide variety of print and audio-visual materials available from Epilepsy B . C . , in our parent resource library at B . C . C . H . , in public libraries, and on the Internet. But there is 12 at present no way of questioning, or means of appraising, the appropriateness of materials being used as resources by parents. In the current health care context it is essential that families and the health professionals within the health care system work together as a whole to manage chronic illness (Boise et al, 1996; Mohr, 2000; Rosenbaum, et al, 1998). In their article Boise et al. (1996) describe a model family support program which operates out of a hospital and addresses health issues for families trying to cope with chronic illness. They point out that "people with chronic disease and their family care-givers often must take on tasks that require special skills and/or knowledge" (p. 80). Hatfield and Lefley (1987) describe working with families who feel stigmatized because one of the members has a mental illness, "the emphasis is on education, support, and advocacy so that families can not only deal with the illnesses but also become actively involved in changing the external conditions that affect their lives (Hatfield and Lefley, 1987, p. 135). To this end, it is imperative that the children and families have access to the information they need. Moreover, addressing this problem is important for nurses because we wi l l then know that we have taken steps towards provision of effective care. It is common for people with a diagnosis of epilepsy to feel stigmatized by society which can in turn lead to isolation, shame, and secrecy. As one mother wrote, " ...there is still a tremendous amount of ignorance, fear, and prejudice about this condition" (Bauer, 1996, p. xiii). Epilepsy is one of the diagnoses that singles a person out in that it is information that is requested on driver's license forms, job applications, camp forms, field trip forms, and school applications. This mother's comments resonate with stories heard 13 from parents and children in our clinic. Counsellor Arden Henley (2000) believed that upon receiving the diagnosis it is easy for the E P I L E P S Y to appear bigger than life and it is one of our roles as health professionals to help the individuals to put the diagnosis in perspective and be able to see L I F E as a bigger focus than the epilepsy. B y educating parents and families we hope that they wi l l have the tools available to deal with the assumptions of others about their family member with epilepsy and the challenges that these assumptions wil l bring. With increased education of families wil l come the ability of families to educate those around them and thus work to decrease the stigma that a diagnosis of epilepsy brings. Statement of the Problem The problem that this research wi l l address is whether the educational resource package developed for, and distributed to, families of children newly diagnosed with epilepsy meets the goals for which it was developed. One of the challenges in working with families is to provide adequate and appropriate information that wi l l help them to make decisions about, and better manage their child's epilepsy while also meeting the child's developmental needs. Persons with chronic illnesses like epilepsy are often stigmatized. One way of responding to misconceptions about epilepsy is through education. Additionally, it has been clearly documented that resources within both the formal and informal sectors of the health care system can provide information and support that can enable families to manage the range of challenges associated with parenting a child with a chronic health condition. It was identified in the literature by Aytch et al, 2001, that 14 parents reported their greatest need was for accurate and easy-to-understand information about what to do when a child has a seizure, what to do in an emergency situation, and the potential effect of seizures and medication on early development and behavior .. . in addition to their own information needs, parents expressed a particular need for educational materials and resources that could be shared with relatives, child care providers, teachers, and baby-sitters. Parents reported that child care staff tended to not be well informed about how to manage seizures (p. 282). In order to respond to families' needs for information related to epilepsy and its management one strategy employed within the epilepsy clinic program is the provision of print materials in an educational resource package. Since this initiative was undertaken by the clinical resources team at B C ' s Children's Hospital approximately 500 families have received the first version of the educational resource package. It is important to evaluate the parents' views of the usefulness and effectiveness of this educational resource prior to undertaking revisions or expanding the program. Part of the continuum of empowering families to cope is educating them so that they may help educate those in their immediate community as they are often the best advocates for their child. Purpose of the Study The purpose of this research study is to evaluate the effectiveness of the educational resource package, as part of a broader education program to meet the educational needs of families with children newly diagnosed with epilepsy. Included in the package is information directed specifically at the parents, the siblings, the child, and the family as a whole. In what follows I wi l l outline the process of development of the educational package, 15 our vision of its use as a community educational tool, the goals of the project, and the tenets of the evaluation. Specifically the study set out to determine i f the resource package: 1) met the learning objectives 2) provided families with further knowledge of epilepsy 3) provided families with information re: supports available to them in the community 4) provided families with resources that helped them cope better with the diagnosis 5) from the family's viewpoint, needs to be improved upon The evaluation was undertaken by means of an evaluation tool sent to families. Data from completed evaluation tools was analyzed using descriptive statistics to gain a better understanding of parent perspectives. Research Questions 1) In undertaking this evaluation we are specifically seeking to explore whether the Epilepsy educational resource package helped families who received it to: understand what is meant by the term "epilepsy" differentiate between seizure types i.e. generalized seizures or partial seizures appreciate the importance of seizure safety implement safety initiatives appropriate for their child understand some of the emotional and psychosocial issues their child may be facing 16 identify some strategies that could enable their child to deal with the emotional or developmental issues he or she is facing understand the role of their child's medication in the treatment of his/her seizures recognize the common side-effects of the medication their child has been prescribed know where to go for further and ongoing up-to-date information on epilepsy know of support groups and community resources available access resources that wi l l allow them to face current and future challenges associated with epilepsy feel that despite the diagnosis they still have some control over their lives Does the mode of receipt of the package (i.e. in the clinic or through the mail) influence parents' perceptions of its usefulness? Are there particular segments of the package that parents find to be particularly useful? Do parents have suggestions regarding how the educational resource package might be improved? 17 Definition of Terms Epilepsy - "a group of conditions marked by recurrent seizures, which are the clinical manifestations of abnormal electrical discharges in the brain" (Lerner, 1995, p. 133). Unprovoked seizures - In this study unprovoked seizures are seizures not brought on by infection, fever, or injury. Persons with unprovoked seizures are defined as having epilepsy. Refractory seizure disorder - A form of epilepsy characterized by seizures that are unresponsive to anticonvulsant therapy. Family - In this study families are defined as a group of parents or legal guardians and their children with epilepsy. Child - The child as defined in the study ranges in age from 1 to 17 years of age and has received his/her diagnosis of epilepsy from a neurologist or pediatrician. Caregiver - This person could be the parent, guardian, foster parent, respite worker, teaching assistant who provides care for the child on an ongoing basis. Primary Adult Caregiver - The person who provides the most direct care to the child. Assumptions and Limitations of the Study The assumptions in a study are statements that are considered by the researcher to be true (Burns & Grove, 1997). There are various assumptions inherent in this study. These assumptions are: - If people understand more they manage better. - That parents have read the package. - That the primary adult caregiver plays a key role in helping the child with 18 epilepsy manage his/her illness. That parents wi l l be honest and accurately report on their experience. - That parents wi l l be able to recall the information received and comment upon its usefulness in helping them to manage their child's epilepsy. The limitations in a study are those things that decrease it from being generalizable (Burns & Grove, 1997). The limitations in this thesis are: - That the families receiving the evaluation tool came primarily from one neurological clinic population. That the study's relevance is limited to those families who received the package. That possible response bias which may threaten the efficacy of the Likert scale (Bucher, 1991). This occurs because "participants may feel pressured to respond to items in a manner they feel is socially acceptable or expected" (Bucher, 1991, p. 237). There is no comparison group in this study. Cause and effect statements can not be made in this study. Significance of the Study A l l patients and their families have the right to receive adequate "information, advice, counseling and teaching" (Hartmann & Kochar, 1994). As health care providers it is our duty to ensure these rights are met. As Hartmann & Kochar (1994) assert, "patients who manage their health and illnesses well have more positive long-range outcomes favoring 19 their chances to be more productive members of society" (p. 101). To that end, it is not only in the interest of the family, but also that of society as a whole, to teach and share knowledge. For families of children diagnosed with epilepsy this is particularly relevant because these families are faced with the unpredictability of the condition as well as the stigma attached with the diagnosis. The significance of this study is to provide information that w i l l allow us to justify our educational resource package as an effective strategy for educating families with children with epilepsy. The resource package is a tool that nurses can use in the ambulatory setting to enhance family education empowering them with a greater sense of control. The evaluation of the educational resource package wi l l provide us with information to better tailor our program to meet our objectives. Summary In this introductory chapter the problem and the purpose of the study were described. As discussed, epilepsy is a chronic condition with an associated stigma. Families are often left with a sense of feeling out of control and information and supports can often be difficult for them to obtain. The educational resource package was designed to provide families with a further knowledge of epilepsy, and to provide information about community supports and resources available to them. This evaluation is being conducted to determine whether the educational resource package for families whose child has been recently diagnosed with epilepsy is useful for families and meets the goals for which it was developed The families' views on how the educational resource package could be improved was also sought. 20 Chapter 2 Literature Review This chapter establishes the framework for the issues that have been identified as of concern to children living with epilepsy and their families. It gives background to the research questions using both theoretical, clinical, and research based publications. The first part of the literature review focuses on the impact of epilepsy on children. The second section is family-centered care and the use of family-centered care at B . C . C . H . The third section is on stigma and epilepsy and the role of education to try to decrease some of that stigma and empower the children and families. The last section discusses approaches to patient education and the use of the Evaluating Printed Educational Materials Model in the design of the educational resource package. The Impact of Epilepsy on Children As indicated earlier, epilepsy is a chronic condition characterized by the tendency to have repeated, unprovoked seizures. These seizures occur as a result of a sudden burst of electrical activity between brain cells and depending on where in the brain the seizures are occurring, different physical reactions are seen. These reactions can range from staring spells (absence seizures) whereby a person wi l l just stare off into space for a few seconds to full blown body convulsions (generalized tonic-clonic seizures). A s McMenamin (1993) describes, 21 About 75 to 90 percent of people with epilepsy have their initial seizures in childhood or in adolescence. Fortunately only a small group of children continue to have epilepsy as adults. Seventy to eighty percent of children with epilepsy respond to anti-epileptic medication and their seizures eventually disappear. Approximately twenty percent go on to have seizures in adult life (p. 2). This condition has wide ranging implications for the child both at home and at school. One major challenge of children and families with epilepsy is that there is widespread public misinformation and longstanding fear of this condition which does not help the child (Dalrymple & Appleby, 2000). As Baker, Brooks, Buck & Jacoby, 1999, describe in their European study, The psychosocial impact of epilepsy has been well documented, and people with epilepsy report the significant impact of this condition and its management, in terms of family dysfunctioning, poor self-esteem, and reduced employment opportunities; with increased levels of anxiety, and depression" (p. 98). For the majority of adults with this condition it is an uphill battle to be accepted, understood, and employed. Just as work can present major challenges for the adult with epilepsy, so school can present a number of challenges for children and their families. School is the place where children learn and socialize. Some children come to clinic with stories of embarrassment over having had a seizure in the classroom and subsequently being shunned. In an effort to minimize such reactions some children (and adults) (Dalrymple & Appleby, 2000) keep their diagnosis hidden and try to avoid interaction with others. For instance, children are often prohibited from sleeping over at friends' homes so that the chance of their 'secret' being discovered is decreased. Recently, one mother claimed that the children in her daughter's grade 1 classroom were constantly commenting to her daughter about how 22 different she was to them in the way she walked and coloured. The mother wanted help in increasing the acceptance and socialization of her daughter. In addition, although health professionals advocate treating a child normally, families find that the diagnosis can serve as a reason for teachers or others to exclude their child from field trips, daycare, play groups, sports activities, and driving. The focus of education therefore must include accurate information about diagnosis, but also education about the community and supports available to them. A n additional issue faced by many families is how parents act out their concern for their child's well-being. Some parents are 'overprotective' and thereby decrease the child's adaptation to the diagnosis by restricting access to activities and experiences that could foster development. Epilepsy is "both a medical diagnosis and a social label" (Jacoby, 1992, p. 657). As Hartshorn and Byers (1994) write: While seizures are the most common physical symptom of epilepsy, treatment must include far more than medical intervention for seizure control. Virtually all aspects of life are affected by the disorder including personal relationships, employment, perception of self and overall quality of life (p. 288). Wildrick, Parker-Fisher, and Morales (1996) echo this sentiment and illustrate its relevance to children and families by commenting on how parents of children with epilepsy tend to be "over-protective" (p. 193) resulting in psychosocial problems such as "insecurity and dependence" (p. 193) and "a less likelihood of marriage" (p. 193). In our own clinic, two neurologists who specialize in epilepsy verbalize the significant roles social stresses play in the lives of these children: "Social stresses can develop into a much greater problem than the epilepsy which makes early intervention critical to a child's adjustment" (Connolly, 1997) 23 and "it is just as important to deal with the social difficulties as it is to deal with the seizures" (Farrell, 1997). In the present economic times it is also important to recognize the costs to families and the health care system associated with chronic illness treatment. For the small percentage of children who have epilepsy that is hard to control, or when it occurs in a child alongside developmental delay, learning problems, or physical and/or mental handicaps, prolonged or frequent hospitalization is not uncommon. This is costly to the healthcare system and to families themselves. For those that remain out of hospital, a family that is unaware of the community supports available may make frequent trips to the physician unknowingly using him/her as their support system. Families in isolated communities may feel that they have no other resource available to them other than their physician. According to Aytch et al, (2001), "families l iving in rural communities with limited access to medical and developmental support resources had even more challenges getting needed information and support" (p. 282). It may simply be, however, that they are unaware of resources available that they can access to learn what the current views are of their child's condition. It may also be that they feel alone and are not aware of others in their community who feel the same way. Family-Centered Care B.C.C.H. ' s philosophy of family-centered care underscores the importance of understanding the needs of children and families as a means for developing collaborative partnerships in caregiving. The family plays an important part in our clinic. Despite the fact 24 that it is one family member receiving a diagnosis, that diagnosis also affects the other family members. According to Johnson, Jeppson, and Redburn (1992) family-centered care is the best form of practice in health care, mental health, and special education because it recognizes the family as a central resource of patients and is committed in the long-term (Mohr, 2000). McGonigal and Garland (1988) echo this sentiment and recognize it as the best way to deliver health care to children and their families. For a program to be considered family-centered, it must contain eight elements: see the family as the constant in the child's life; encourage families and professionals to work together; see each family unit as unique and appreciate its strengths; provide support between families; recognize the child's developmental needs; provide emotional support for families; and ensure the healthcare facilities are accessible to all (Johnson et al, 1992). The National Center for Family-Centered Care (1990) states, Family-centered care is the name that has been given to a constellation of new philosophies, attitudes, and approaches to care for children with special health service needs. A t the very heart of family-centered care is the recognition that the family is the constant in a child's life. For this reason, family-centered care is built on partnerships between parents and professionals, (brochure) This approach to pediatric care affects the whole system and is based on the assumption that the family is the main strength and support for the child (Hanson et al., 1994). Rosenbaum et al (1998) write, Over the past ten years the role of the family in the child's life has received increased recognition. Both research and parent advocacy have led health care professionals to a realization that parents have tremendous insights into their child's abilities and are valuable resources in their lives (p. 3). 25 In their paper on family-centered service, Rosenbaum and colleagues (1998) discuss a conceptual framework that they developed to address the issue of providing family-centered care. Working from three basic assumptions that they have made about families, the framework goes on to consider guiding principles or "should statements" (p. 5) that are the foundation of family - professional interaction (p. 5). They see the framework as a tool available to health care professionals. It appears that B . C . C . H . does not formally acknowledge the use of a particular framework however, in premises and principles, it appears that we adhere to the one mentioned above. It is appropriate therefore, for an intervention in this context to target families as both a resource and a partner in the child's care. With the new emphasis on the provincial health policy of "Closer to Home" the focus on patient and family education is paramount. As discussed in Caraher (1998) and echoed by others (Hartmann & Kochar, 1994; Kaminski & Harty, 2000; Richards, 1999; M c K e o n , 1998; Heginbotham, 1998) there is now a view to the overlap of health promotion and educational efforts of professionals in the hospital and the community. One outcome of having information is that families are more able to participate in decision making and able to access additional information or support when their child's condition changes (Bernier, 1993; Krames & Staywell, 1996). Many families access information on the internet readily and easily (Bergeron, 1999). However, not all information is good information, and as health care professionals it is our duty to provide accurate information as well as to better assist families in appraising the quality of the information they receive elsewhere (Bergeron, 1999). This is what we have tried to do in developing the educational resource package for 26 families with a child with epilepsy. The philosophy of care at B . C . C . H . is family centered and the principles that inform it are consonant with the work of family nursing theorists. For example, Friedman (1986) views the nurse as a resource person for the family who has an important role in several health education activities. These include: "1) teaching health promotion and disease prevention, and 2) assisting families to develop skills to cope with their present health problems and treatment regimes" (p. 23). In our clinic, we are nursing the individual in the context of the family, but in enacting our practice we are also taking direction from family nursing theory. According to Hal l (1987), family support in practical (education, information), emotional (reassurance and support during stressful periods), and social (support networks, role modeling) terms is very important as "the more comfortable and knowledgeable parents feel, the better their adjustment to their child's situation" (p. 721). Stigma and Epilepsy Erving Goffman, a sociologist whose studies on individual identity have helped shape today's views, observed that it was through social interaction that our identity was developed and that "the way we see ourselves, the groups we believe we belong to and the ways in which we interact with group members are conditioned by others' responses to our claims and our actions" (Alaszewski & Manthorpe, 1995, p. 38). In her writing on the stigma of mental illness Kenny (2001) writes, 27 Stigma is a multifaceted concept that involves attitudes, feelings, and behaviors. It implies a negative label being placed on an individual or group and manifests as prejudice, discrimination, fear, distrust and stereotyping. Stigma results when an individual possesses any attribute, trait or disorder that marks that person as different from the "normal" people with whom he or she routinely interacts. This difference is viewed as undesirable and results in negative or punitive responses from people around the individual, and from society as a whole (p. 20). Literature on stigma primarily centers around diagnoses of mental illness and within that, depression, and I wi l l use these diagnoses in addition to epilepsy as they are also chronic, episodic illnesses with unknown futures in terms of control and remission. For people with mental illness "public opinion continues to harbor fear and mistrust" (Kaminski & Harty, 2000, p. 28). Other authors echo this sentiment and the fact that the feelings of isolation and discrimination that are associated with stigma affect not only the person with the diagnosis but also his/her family members (Harding, Zubin & Strauss, 1987; Lefley, 1992; Kaminski & Harty, 2000). "Epilepsy has been called a "stigmatising condition par excellence" and "evidence suggests that higher levels of perceived stigma correlate with anxiety, depression and low self-esteem" (Baker et al, 1999, p. 98). When patients lack ability to challenge the social conditions that allow persons with certain illnesses to be stigmatized they may participate in perpetuating myths about the illnesses. Realizing that they are stigmatized because of their diagnosis, patients may attempt to keep their illness a secret, or minimize the reporting of symptoms in order to present themselves as 'normal'. This underreporting of symptoms increases the likelihood that it wi l l be difficult for physicians and caregivers to provide complete care (Stotland & Stotland, 1999; Dalrymple & Appleby, 2000). It has been demonstrated that education of both the public, the families, and the health care 28 professionals, decreases the stigma associated with these illnesses (Byrne, 1999; Heginbotham, 1998; McKeon , 1998; Lefley, 1992; Richards, 1999). Additionally, Goffman and others have demonstrated that accurate information can begin to dismantle myths associated with illnesses that allow persons with them to be unfairly treated. In the discussion following their study on stigma Baker et al (1999) write, Feelings of stigma may arise as a direct consequence of experiencing others' fear or worry about having to deal with someone having a seizure, and in addition, the problem may be exacerbated by a lack of accurate information about epilepsy and the prevalence of stereotypic expectations with regard to the types of seizures experienced" (p. 103). This research on stigma draws attention to the isolation associated with, and negative associations of, a diagnosis fuelled by misinformation. These conditions make it likely that persons feel they have little control over their diagnosis and communities' responses to it. This illustrates the need for initiatives to enable patients and families to regain some control and feel empowered. A first step in this educational process is to provide patients and families with information so they can advocate for their children and challenge those with misinformation. The next step would include public education. Approaches to Patient and Family Education Children and families with epilepsy have some unique characteristics as discussed earlier. They have a need for information, feel isolated, and have a need for illness management, but they are also geographically dispersed and therefore have uneven access to the resources of the tertiary neurology clinic. After a review of the clinical and research 29 literature direction for our educational resource package was taken from a model designed to guide the development of print educational resource materials as this method of education offered the greatest flexibility at the least cost. The model chosen for our work was the Evaluating Printed Education Materials ( E P E M ) model. This model has a patient-centered focus, can be used in many settings (Bernier, 1993) and can be implemented by a variety of professionals. Also , "the use of printed education materials (PEMs) [is] one of the most economical and effective instructional mediums available" (Bernier, 1993, p. 39). These "printed education materials (PEMs) are defined as written or printed booklets, leaflets, pamphlets, or information sheets whose purpose is to provide information about health promotion, disease prevention, diagnostic procedures, treatment modalities, and self-care regimens. They represent the most common form of instructional materials used with patients and families today" (Bernier, 1993, p. 39). And , as Hansen (1995) suggests, "written health education material is read and used by a considerable part of the population. Studies have shown that distributing booklets that provided advice for parents reduced the number of parent-initiated consultations" (p. 137). The E P E M was developed to guide the direction of print resource packages and a broad ranging population. "The model contains nursing, learning, and instructional design principles or guidelines that when applied, make P E M s more relevant, readable, and comprehensible to the patients and families who use them" (Bernier, 1993, p. 39). The Evaluating Printed Education Materials (EPEM) Model The E P E M consists of five phases. "Just as the nursing process follows a circular 30 path from assessment to evaluation, the E P E M phases: Pre-design, Design, Pilot Test, Implementation/Distribution, and Evaluation, include ongoing (formative) and end product (summative) evaluation criteria" (Bernier, 1993, p. 40). In what follows I wi l l outline briefly the components of each phase. The predesign phase of the E P E M addresses the purpose, goal, audience and objectives of the program. In accordance with this, the purpose must be defined immediately. The purpose is the why of the project. The purpose also reflects the need for the educational materials. From the purpose flows the goal of developing the educational materials. The goal speaks to end result and what is to be achieved with the development of the materials. The next data that needs to be obtained is who needs to know the information, and what information wi l l be most helpful to them. It is important to go to the children and their families for this information as well as other health care professionals who work with these families. A n d finally, in this beginning phase the objectives of the package need to be defined. "The objectives of the P E M s specify the who, what, how, and when aspects of the measurable learning outcomes" (Bernier, 1993, p. 40). The design phase of the E P E M consists of five principles. These principles aid in developing the program. The content principle concerns the information distributed. The information given should be essential, useful, and accurate. The organization principle specifies the need to remain client-focused. The motivational principle reflects the need for the material developed to appear pertinent to the audience. It ascertains that "the instructional content should focus on what the target audience should do as well as know" (Bernier, 1993, p. 41). The last two principles, the linguistic and graphic principles, are 31 concerned with the readability and presentation of the printed materials. B y making the package easily readable and pleasant to look at, the chances of families using it is increased. Increasing the knowledge base of the families and those they come in contact with, wi l l hopefully, in the long run, decrease the stigma associated with a diagnosis of epilepsy. Once the above principles have been adhered to, and a program developed, there needs to be a pilot test of the P E M . This involves distributing the P E M to a small number of patients and health care professionals concerned with the health need. Then, either verbal or written feedback should be solicited. The revised draft then needs to be reviewed by another group. The implementation/distribution phase should have been outlined in the beginning design phase. " A n effective distribution system is one that maximizes the learning potential for the target audience by providing the P E M at the time when it is needed" (Bernier, 1993, p. 44). Consideration should also be given to whether or not those giving the materials to the families need guidelines for doing so. The place of distribution of the materials and the audience need to be considered. The fifth phase is the evaluation phase, one of the most valuable, but seldom performed, activities. A proper evaluation perfects the materials, identifies whether or not the program meets the purpose, goal, and objectives intended, and whether or not revision is necessary. In the end it makes them more useful to others. In designing our educational resource package we took direction from the E P E M structure and process and sought to develop an educational resource that would: be accessible to dispersed populations; provide information that would enable families to 32 manage their child's illness; enable families to establish connections with supportive professionals and community based resources thereby helping to diminish the isolation and loss of control often associated with a diagnosis of epilepsy. Summary This chapter provides an overview of what is known in association with a diagnosis of epilepsy. It touches on some of the issues children with epilepsy or other chronic illnesses and their families face and some of the ways that we as health professionals can help diminish the negative impact of the diagnosis. The literature suggests that stigma is often associated with epilepsy and that by educating families we empower them to diminish the misconceptions of others. It is important that families are able to connect with others, know where their supports and resources are located, and how to get information. In our ambulatory neurology clinic we are using different strategies such as this educational resource package and telephone consultation to help families get needed information. Family-centered care is an important component in dealing with children with chronic illness and their families and ways that our clinic practices family-centered care is outlined. In order to develop our resource package we used the Evaluating Printed Education Materials ( E P E M ) Model as a guide and key elements are outlined in the literature review. 33 Chapter 3 Research Methodology In this chapter the research design, sample selection, and development of data collection tools, and procedures for data gathering used in this study are outlined. A description of how the ethical considerations were addressed and how data were analysed is included. Research Design "Evaluation research is the utilization of scientific research methods and procedures to evaluate a program, treatment, practice, or policy; it uses analytical means to document the worth of an activity" (LoBiondo-Wood & Haber, 2002, p. 215). A n evaluation was conducted to determine whether or not an educational resource package developed in the neurosciences department at B . C . C . H . met its learning objectives. The evaluation also set out to determine the strengths, weaknesses, and areas for improvement of the resource package, and to use the findings to alter the means for meeting the objectives if necessary as is consistent with the purposes of evaluation research as set out by Bigman (1961) in LoBiondo-Wood & Haber (2002). This evaluative study gathers summative data. This data is gathered after the families have received the educational resource package. We are therefore able to collect data related to outcome (LoBiondo-Wood & Haber, 2002). The way that we did this is outlined below. This study is a descriptive evaluation of the families' views of the usefulness of the educational resource package. A sample of parents who have received the teaching package 34 were sent an evaluation tool and a subset of this sample also participated in telephone interviews. In addition to gathering data from the families about the usefulness of this educational package I was interested to know whether parents thought the package could be improved upon, and i f they had recommendations re the mode of receipt of the package. For this study, evaluation data were gathered from families who received the educational resource package between September 1998 and December 1999. In order to evaluate the resource package a data gathering instrument (evaluation tool) needed to be developed. In what follows the procedures for designing the educational resource package (step 1) and developing data gathering tools to evaluate the educational resource package (step 2) are outlined. Direction for step 1 of this process was taken from the E P E M model introduced in chapter 2. How the study was subsequently undertaken is then described. Step 1 - Designing the Educational Resource Package Our Educational Resource: Part of a broader Educational Program In the neurology clinic at B . C . C . H . , and in accordance with the E P E M , an education resource package about epilepsy for the families of children who were recently diagnosed with epilepsy, was developed by nurses. The package is given to families both in the clinic, on the inpatient module, and via Epilepsy B . C . for those families diagnosed elsewhere in the province. In developing the package we worked to ensure congruence between information given on the ward, in the clinic, or in the community. Our educational resource, the patient education package, was designed taking 35 direction from E P E M . I outline the five phases of its development. The development occurred in five phases. Each phase is outlined below. Predesign of the Resource Package In the neurology clinic we teach children and their families about the child's seizures or epilepsy, what to do in the event of a seizure, safety concerns, and about their particular medication, resources and community supports available to them. This knowledge enables the client and his/her family as a whole to recognize, treat, and do their best to prevent, seizures. In this way we are practicing "primary prevention and health promotion by determining long-term risks to which a client is exposed and prescribing measures which wi l l hopefully reduce the risk factors" (Friedman, 1986, p. 21). It was important to us that our main focus be the family because even though the diagnosis of epilepsy would be for one family member, it would also affect the others. We agreed that "...the primary goal of family nursing is health promotion and maintenance" (Friedman, 1986, p. 16). As outlined earlier in this thesis the problem the nurses identified was that children and their families throughout B . C . often received different and inconsistent information about epilepsy and the social and safety considerations that accompany the diagnosis. We identified this as a problem because it was difficult to ensure that those with epilepsy received what we considered the essential basic information about the condition and its management. We therefore formed a committee to examine this problem. We met monthly, or weekly as the project advanced, and drew on the individual expertise of the group. The purpose of our clinical program in neurology is to address the population need outlined earlier in this paper: the family needs accessible up-to-date consistent information 36 on epilepsy regardless of where, or by whom, the diagnosis was made or where on-going care is delivered. Our goal includes making children and their families safe and enabling them to continue to pursue goals and related activities which to them constitute a fulfilling life. The development of the educational resource package is congruent with our educational goal for the families which is: children with epilepsy and their families wi l l receive useful information about epilepsy with regard to seizures, safety, medications, and lifestyle. After establishment of the purpose and goal of the educational resource package we decided on the target population (audience) for the package. Our experience illustrated that while the child would find some information in the package useful, parents would make up the largest group of users. Because we are dealing primarily with the parents or caregivers of minor children, we are dealing with dependent care - that of "actions performed by responsible adults to meet the components of their dependents' therapeutic self-care demands" (Orem & Taylor, 1986, p. 49). While directing much of our teaching towards the parents, during the child's younger years, in accordance with Orem's theory, we use the package and additional resources as a means to support and educate various family members and promote self-care by encouraging the children to take responsibility for their own safety, medication, and education of others as soon as they are able and not to rely completely on their parents, teachers, or caregivers. In this way we are assisting the children and their families to take control of the illness in their lives and manage the epilepsy within the context of their lives. In keeping with the tenets of E P E M , once the program goal and target population 37 were established, the learning objectives of the program were outlined and criteria for evaluation were tentatively identified. The learning objectives developed for the package follow. Upon completion of Reading the "Epilepsy - Education for Families" package, families wi l l : 1. understand what is meant by the term "epilepsy" 2. be able to differentiate between seizure types i.e. Generalized or Partial 3. appreciate the importance of seizure safety 4. understand some of the emotional and psychosocial issues their child may be facing and identify some strategies that could enable their child to deal with these issues 5. understand the role of their child's medication in the treatment of seizures and recognize some of the common side-effects of the medication their child has been prescribed 6. know where to go for further and ongoing up-to-date information on epilepsy and support groups and community resources available 7. feel that despite the diagnosis they still have some control over their lives These objectives then guided the development of a resource evaluation tool and are represented in the first research question of this study introduced in Chapter 1. 38 Design of the Resource Package In accordance with the design phase of the E P E M , the next step of the program planning process defined content, organization, fostering motivation in families, language of written materials, and graphics of the educational package. The format of the package was one of the hardest aspects to negotiate among the team. As a number of educational resources were already available we did not want to duplicate these, but each resource had limitations. We therefore chose a format that allowed us to utilize some already well developed information (ie. pamphlets). Our first thought was that of a binder, but that did not help us include pamphlets. The file folder was seen as the most logical format for organizing information. In this way, pamphlets from other sources, some of which we are already using in the clinic, as well as typed handouts that we have created ourselves, could be included. It made the format flexible enough that additional information could be included as needed or as new information became available. For example, as a child's diagnosis changed, as the child aged, or to respond to requests for increased information. Once we agreed on a folder format (see Appendices A and B) we decided that we wanted to include some generic information written by ourselves that we considered essential and important in every folder in a format that would make it easy for the families to read and for health care professionals to use as a teaching tool. Our decision was to use stacked pages, each page dealing with one key issue (see Appendix C) . The content of the package includes information in the form of printed materials and pamphlets on the definition of epilepsy and various seizure types, medications used to treat the various seizure types, the importance of medication compliance, seizure safety, tests used 39 to gain additional information about possible seizure causes and/or types, information on psychosocial issues, as well as resources available for parents both in hospital and in the community. A l l of these materials focussed on family learning needs. A s noted earlier, in developing these core resource materials we sought to consider the possible range in age and educational level of family members using the package. In addition to print materials other educational information is available in a variety of formats for family members. These include videos, books, coloring books, and sticker posters. Educational information on seizures also targets different age groups. In deciding what information to include beyond the basic package, we take into consideration what the family members already know and what they need to know. In this way we are assessing their learning needs and helping them meet their educational and developmental needs (Marriner-Tomey, 1995). One of the considerations in developing the package was how we were going to approach providing information about the education of children and their families on the various issues they would encounter within their immediate circle of friends, relatives, and community. It was Imogene King 's view that "human beings are open systems in constant interaction with the environment" (George, 1985, p. 236). This view guided our decision making regarding the contents of our package. We aim to educate the children and their families so that they wi l l be able to make informed decisions about activities appropriate for their child. We also wanted to include resources that recognize that epilepsy in a child has an impact on all family members. As the target population includes families from a wide variety of cultures, 40 occupations, educational levels, and motivations to learn it would be important that the package be readable at a grade six level to make it accessible to the majority of people. This estimation of readership for our education program was based solely on group experience among the nurses on the formulating team but is consistent with guidelines developed for patient education materials (Bernier, 1993). Each component was given a clear and simple title and a simple layout was used. For easier reading, we had our material printed in black and white. Fostering motivation to use the package may be difficult for those children and their families seen outside B . C . C . H . However families outside may be more motivated because they have less contact with a specialized team. During the seizure clinic visit teaching-learning takes place between the doctor and patient/family and is followed by reinforcement and more teaching-learning with the nurse. This time with the families gives nurses a chance to introduce the educational resource package, go through each of the materials contained within and point out their relevance to the particular child's diagnosis. In this way we can demonstrate why the information is important and how the family can use it. This approach also allows the family a chance to ask questions about anything they see in the package. This motivation wi l l not be easy to replicate in the community setting. The child and his/her family wi l l not necessarily have a professional to sit down and review the package with them and may not feel as motivated to read the information. It is important to show families how the package can be used by them to educate those around them. Pilot Test of the Resource Package According to the E P E M the next step in the process is to do a pilot test of the 41 teaching package. The draft of the package should be reviewed by "current and former patients/families, health professionals, and experts in other disciplines" (Bernier, 1993, p. 43). We gave our teaching package draft to six parents of children with epilepsy, six nurses on the ward, all the neurologists in our department, and to the neuropsychologist and the psychologist that are most involved with our program. It was a time-consuming process to collect and analyze their comments but it was worth it. There were instances when we had to choose between comments that were made by only one physician or nurse and opt to go for the majority's view with respect to information included. For example, this occurred if the recommendations were contradictory. In other cases one person's comment was included if the comment added a new dimension or appeared to be of most value. What we were left with, we felt, was a useful package that we could all be proud of. The resulting second draft was reviewed by a smaller group of individuals (three parents and six health care professionals) with only minor revisions necessary. Implementation/Distribution of the Resource Package The next step in the E P E M is the implementation and distribution phase. Research has been done by proponents of patient education to discover the most effective means of information delivery available for patients and families. It has been stated by Bernier (1993) that "the literature on patient education indicates that patients like printed educational materials and in some studies, preferred printed pieces over audiovisual teaching materials... greater knowledge was achieved by patients in the treatment groups" (p. 40), who were the patients whose information was provided by means of printed educational materials (PEMs). It was also shown that P E M s in combination with personalized reinforcement (reviewing 42 the materials with a health care professional), such as they receive here at B . C . C . H . in the seizure clinic or on the ward, gave the best learning outcome (Hansen, 1995; Glanville, 2000; Ay tche t a l , 2001). For our purposes, we assumed that whether the information was given in person by one of us at B . C . C . H . or sent for by the family following a physician visit and diagnosis, there would be some element of human interaction to aid in motivating the patient/family in reading and retaining some of the information that we felt was important. If the package was received at B . C . C . H . , then the nurse and or physician would go through the package with the patient and his/her family highlighting the important points that are relevant to their child's care. However, outside of B . C . C . H . the family received the information by mail and the opportunity for reinforcement was less available. This, therefore, is an area we wish to explore in the evaluation. The distribution of these educational resource packages to children and their families, many of whom wi l l not be seen at B . C . C . H . , is an ongoing challenge. The partnership with Epilepsy B . C. makes provincial distribution much easier, and fosters a close working relationship between the lay society and health care professionals. This partnership represents an important step in implementing the program. As Dignan and Carr note (1992), the first job in the implementation stage is to get people to buy into the program. " A new program means change, and many individuals and organizations resist change. Two groups that must be ready to attempt change i f the program is to be implemented are the target population (consumers) and the sponsors and staff (providers) of the program services" (p. 123). 43 For children and their families that are diagnosed either in the seizure clinic or on the neurosciences inpatient unit at B . C . C . H . , the package is assembled by a nurse or physician and reviewed with the child and his/her family by that person. The package wil l be assembled differently for each individual family according to the child's age, diagnosis, and medication. For example, a basic folder with general information on epilepsy wi l l be given to each family. Inside that basic folder wi l l be inserted different pamphlets as directed by the above criteria. A copy of the flowsheets to direct pamphlet assembly wi l l be on the inpatient unit, in the seizure clinic, and at Epilepsy B . C . (see Appendices D and E). For those children who wi l l not be seen at B . C . C . H . , a "prescription" (see Appendix F) wi l l be written by the diagnosing physician in the community on a "prescription pad" that we have developed. To work out any glitches that may occur during the initial phases of our program we chose to begin the delivery of our teaching package to pediatricians only. We began at B . C . C . H . with the seizure clinic and inpatient neurosciences unit as well as two groups of pediatricians. One of the groups of pediatricians works out of B . C . C . H . and one group out of Kelowna (one of our outreach destinations with whom we have developed a good rapport). Both groups of physicians have reviewed the teaching package and indicated that it is valuable and wi l l be useful to them. Prior to the use of the "prescription pad" the physicians in our trial group (those in Kelowna and at B . C . C . H . ) were given a brief inservice by myself as to the workings of the program and the content of the educational resource package. The "prescription" is written by the physicians and given to the family. The "prescription" is then sent by the family to Epilepsy B . C . There the package is assembled 44 according to the flowsheet and sent to the family. In this way, with success of the program, we wi l l know that children in British Columbia with newly diagnosed epilepsy wi l l all be receiving the same relevant, up-to-date information regardless of their residency. Much work has been done by the director of Epilepsy B . C . since our partnership to make the physicians aware of this initiative and to educate them about how they wi l l benefit from the epilepsy education project once it is available to them. In this way, inservices throughout the province may not be necessary to get all physicians on board and aware of this program. Other considerations in the design of the package were the resources for, and constraints of, developing our teaching package. Our resources for the teaching package took the form of physical, monetary, and personnel. We are fortunate to have a print shop that is at our disposal in the hospital to print our folder and teaching sheets. We are also fortunate to have the pamphlets from other sources. We applied and received telethon funds and these were used to print the folders and teaching sheets and also to purchase pamphlets and to purchase additional staff time to develop the package. In developing the package we drew upon the expertise of the health professionals and the children and their families attending the clinic were invited to contribute their opinions and suggestions. The other personnel that were not involved in the development of the package were the physicians who agreed to use the package in the community once it was developed. More wi l l be included about this later. The biggest constraint in the development of the program was time. The development went well beyond its original two-year time-frame mainly because of the time 45 constraints of the health care professionals. Many of the people who reviewed the draft needed more than a few reminders to return their comments on time. The telethon funds had to be used within 2 years as per our proposal and ended with the printing of the package. We were able to print 1000 copies and based on our patient population profile we hoped that number would be sufficient for two years. It was timely that the lay society in British Columbia for people with epilepsy (Epilepsy B .C . ) was looking for a means of distributing information to children and their families throughout the province. We were able to form an alliance which was fortuitous in light of the constraint of our future resources. We have made our packages known to them and have agreed to work together to educate the families in British Columbia. Epilepsy B . C . has provided us with further funds to purchase ongoing information pamphlets as we need them and wi l l aid in distribution of packages which wi l l be discussed later in the paper. Another constraint is the lack of health care professionals or family support groups that are well-educated about epilepsy in the community. It would be wonderful to refer the family to someone else closer to home to go over the package with them and answer any questions they may have. Evaluat ion of the Resource Development Process The last step in the development of a teaching package is the evaluation. A record of the packages (93) given out either in clinic, inpatient unit, or through Epilepsy B . C . was kept during the first 18 months (1998-1999) of distribution and an evaluation tool was sent to those families. As Bernier (1993) points out, "the most neglected activity related to P E M 46 development and use is the evaluation of the learning outcomes achieved with P E M s " (p. 44). It was determined that appraisal of achievement of the learning objectives by the family would be initially based upon clinical assessment by both the nurse and physician during follow-up visits to the physician, and would be potentially evident in a reduced number of phone calls to community nurses, teachers, family physicians, and seizure clinic nurses. Since many families do not have a follow-up visit with the clinic, this form of appraisal is insufficient. It is only a subset proportion of the patient population. In order to capture the entire clinic population it was determined that a more comprehensive evaluation would need to be developed. This development is outlined in Step 2 of this study. Upon completion of this program design process the prototype of the Educational Resource Package was developed and procedures for its use and distribution were developed. In September 1998 these packages started to be distributed to families with children newly diagnosed with epilepsy. Step 2 - Developing the Evaluation Tool The Evaluation Tool The first challenge in undertaking the evaluation was to develop a tool that answers the research questions in Chapter 1. In the case of this study the overriding goal was to appraise whether families who used the package felt it achieved its objectives. I began tool development by starting with the Client Satisfaction Questionnaire (CSQ) that had been developed by Daniel Larsen, Attkisson, Hargreaves & Nguyen, (1979). This tool was developed to assess the satisfaction of clients in psychiatric outpatient clinics. 47 Larsen (1979) also noted that the tool was very amenable to the addition of questions which allowed it to be modified for use with other population groups and for other purposes. In the context of this tool, the authors state that "the distinguishing feature of satisfaction research is that service recipients are explicitly asked to evaluate the services provided to them" (Larsen et al, 1979, p. 197). This concept is comparable to dimensions of evaluation of the epilepsy package. As outlined in chapter two, the learning objectives wi l l be met if the families are satisfied that the information they received was useful. Because Larsen's tool focussed on the satisfaction of families which was not completely my aim, I used the tool only as a beginning point. I used the format of the C S Q as my starting point and then developed my tool based on the objectives for the educational program. I asked two or four questions around each of the research questions outlined in chapter 1. Although not set out in order on the evaluation tool, for most research questions I have asked two Likert scaled questions or closed-ended questions followed by one to two open-ended questions. The resulting evaluation tool has 39 questions of which 13 utilize a Likert scale. The Likert scale is "designed to determine the opinion or attitude of a subject and contains a number of declarative statements with a scale after each statement" (Burns & Grove, 1997, p. 363). These questions are rated on four dimensions. B y having only four dimensions I eliminated the neutral answer, or forced choice (Burns & Grove, 1997; Roberts & Burke, 1989). A number of authors cite both forced choice and neutral response options as appropriate with Likert scale questions (Burns & Grove, 1997; LoBiondo-Wood & Haber,2002). A 4-point scale was chosen because it requires respondents to take a position on the positive or negative side of each question. Where descriptive statistics are being used 48 a 4 point Likert scale is appropriate. This study uses descriptive statistics. Burns and Grove (1997) note that in some instances the forced choice option can create a sense of frustration in the respondent (p. 363) and suggest that this is a reason for not using it. The evaluation tool I have developed includes open-ended questions with the Likert scales meaning for each category the respondent has an option of explaining his or her response more fully in an open-ended format. For this reason I did not think frustration would be a concern. Burns and Grove (1997) also suggest that the instrument should contain 10-20 Likert scaled questions and that half should be written in a positive and half in a negative manner to help eliminate response bias. The evaluation tool was written in this manner. Responses to such tools can provide information about the degree of usefulness of particular programs. The evaluation tool also includes 15 close-ended questions and 11 open-ended questions. The close-ended questions are often used in large surveys where questionnaires are mailed out to prospective subjects (Roberts & Burke, 1989). The closed-ended questions are used to gather specific information. The open-ended questions are designed to build on the information obtained by the scaled method and provide an opportunity to expand on information re: the usefulness of information to particular family situations and to elicit suggestions for improving the distribution or content. The questions are designed to gather information about each objective for the package. Table 1 gives an overview of the research questions for the package (as outlined in chapter 1) and the questions on the evaluation tool designed to gather data related to each. For some of the questions the wording has been changed to make the questions clearer. 49 Table 1: Research Questions and Associated Questions in Epilepsy Education Package Research Question #1: Learning Objectives of Epilepsy Education Package and Associated Questions on Evaluation Tool Do families understand what is meant by the term epilepsy? Q: Do you know what is meant by the term epilepsy? Can families differentiate between seizure types? Q: Do you know the difference between partial and generalised seizures? Do families appreciate the importance of seizure safety as a result of reading the package? Q: Did the Epilepsy Education Package help you learn about the safety considerations associated with epilepsy? Q: Since reviewing the package have you had discussions about seizure safety with your family or others like teachers, babysitters etc. as a result of reading the package? Does the respondent understand some of the emotional and psychosocial issues their child may be facing? Q: Do you feel that as a result of the educational package you are more able to meet your child's cognitive or physical developmental needs associated with a diagnosis of epilepsy? Q: Did the Epilepsy Education Package help you and your family identify some of the social and emotional stressors which accompany a diagnosis of epilepsy? Q: Was there information in the package to give your family the ideas about how to address some of these stressors? Q: Do you and your family feel that as a result of the Educational Package you are better able to deal with issues associated with epilepsy now and in the future? Does the family understand the role of medication in the treatment of seizures and some of the common side-effects of the medication their child takes? Q: As a result of the information in the package do you feel you understand the role of medication in seizure treatment? Q: As a result of the information in the package do you feel you understand the common side-effects associated with the seizure medication your child is prescribed? Does the family know where to go for further and ongoing up-to-date information on epilepsy and support groups and community resources available? Q: Did the Epilepsy Education Package help you learn about different resources available to you and your family? Q: Have you used any community resources suggested in the educational package? Q: If you answered "yes" to the above question, which ones? Q: If you answered "no" to the above question, why? Q: If you needed more information about epilepsy, would you know where to go to find it? Do the families feel that despite the diagnosis they still have some control over their lives? Q: Has the Epilepsy Education Package helped you inform others about your child's diagnosis of epilepsy? Q: If you answered "yes" to the above question, how? Q: If you answered "no" to the above question, why? Q: Did the information you received help you in your interactions with health care professionals or teachers? Q: If you answered "yes" to the above question, how? Q: Did the information you received help you clarify other's misconceptions about epilepsy? Q: If you answered "yes" to the above question, how? 50 Research Question #2: Does the mode of receipt of the package (i.e. in the clinic or through the mail influence parents' perceptions of it's usefulness? Q: How would you rate the usefulness of the Epilepsy Education Package that you received? Q: Where did you receive your teaching package: hospital inpatient unit; hospital outpatient unit; B.C. Epilepsy? Q: Did you have a health care professional review the package with you when you received it? Research Question #3: Are there particular segments of the package that parents find to be particularly useful? Q: How would you rate the usefulness of the epilepsy education package that you received? Q: What information, if any, was the most useful? Q: What information, if any, was the least useful? Q: Did you feel you received enough information? Q: If you answered "no" to the above question, what information would you have liked that was not included? Q: How much of the information in the package was new? Q: How much of it was a review of previous teaching? Q: Was the information you received relevant? Q: Was the information you received up-to-date? Research Question #4: Do parents have suggestions regarding how the educational resource package might be improved? Q: What information, if any, was the most useful? Q: What information, if any, was the least useful? Q: Did you feel you received enough information? Q: If you answered "no" to the above question, what information would you have liked that was not included? Q: Has the epilepsy education resource package helped you inform others about your child's diagnosis of epilepsy? Q: If you answered "yes" to the above question, how? Q: If you answered "no" to the above question, why? Q: When do you think would be the best time to receive the package? Q: At which of these times did you receive the package? Q: If a friend's child was diagnosed with epilepsy would you suggest our epilepsy educational package to him/her? Q: The thing I liked best about the epilepsy education package was Q: If I could change one thing about the epilepsy education package it would be Pilot tests are performed to "determine the clarity of questions, effectiveness of instructions, completeness of response sets, time required to complete the questionnaire, and success of data collection techniques" (Burns & Grove, 1997, p. 360). Prior to sending out the evaluation tools to families it was piloted by six parents in the clinic. The purpose of the 51 pilot is to "test the practical aspects of a questionnaire... with a group of subjects similar to those who wi l l be tested in the actual study" (Roberts & Burke, 1989, p. 263). The families that piloted the evaluation tool all came from the neurology clinic and all had children with epilepsy. Each family found the evaluation tool straight-forward, easy to follow and understand, and agreed that they could complete it within twenty minutes. The Demographic Data Tool In addition to gaining information about: the educational resource package we wanted to gather information to describe the sample of families in the study so a tool to provide demographic data was also developed. We were particularly interested to know if some of our assumptions about families were correct and to be able to provide a profile of families who participated. A variety of types of descriptive data were gathered, which were then analysed. (See Appendix G). Reliability and Validity In any study it is necessary to undertake steps to ensure reliability and validity. Reliability is the consistency of the data obtained and the accuracy of measurement. This study gathers descriptive data and the tools therefore are not measurement tools so analysis of the reliability of the questionnaire is not required. The purpose of my analysis is to compile descriptive data and create a profile to assess whether the objectives were met. The validity is the extent to which the data gathered actually reflects the intended purpose of the questionnaire. There are different types of validity. Content validity is the 52 usual approach used in the development of a new tool (Roberts & Burke, 1989). For content validity it means that experts say that it covers what it should. Content validity was not strictly considered because I was not planning to use the tool for other than this small population and there were no experts in tool development in neurosciences. I did meet part of the criteria for content validity however, as I consulted the literature for tool development and two statisticians reviewed the questions for appropriateness. The type of validity I considered was face validity. This means that the tool looks to measure what it should. Research Procedures Sample Selection The population of interest in this study was all the families who read the educational resource package. The population of families was identified in the outpatient clinic and the inpatient unit at B . C . ' s Children's Hospital and through B . C . Epilepsy. The population of families identified in the clinic or on the inpatient unit was created by having the physicians or nurses stamp labels with the child's name, address, and hospital number and deposit them in a box in the clinic when they were giving out a teaching package. There may have been a greater number of families who received the educational resource package. A l l those families whose names were in the box were invited to participate in the evaluation. These families were to have either a nurse or physician review the package with them and do some teaching with respect to their seizure types, seizure safety, and medication. The families identified through the B . C . Epilepsy Society by having the society forward the "prescriptions" from various pediatricians in the province to me once they had compiled the 53 packages for the families and sent them off. The sample was selected from our data bank of this group. The educational resource packages have been given to families of children newly diagnosed with epilepsy in the outpatient neurology clinic, on the inpatient neurology unit, or through the community pediatrician via Epilepsy B . C . since September 1998. We collected the names of these families from September 1998 until December 1999. Evaluat ion The program evaluation took place over a six-week period, two to three years after receiving the package. The evaluation tool was sent to all of 93 families who had received the education package in the first 18 months of the program as noted above. The cover letter (Appendix H) requested that the families return the completed evaluation tool within two weeks in the envelope provided. A response rate of less than 50 % on mailed out questionnaires decreases the representativeness of the sample (Burns & Grove, 1997). The most common strategy for increasing the response rate is to send out reminder letters. After two-weeks therefore, families who had not returned the evaluation tool were sent a reminder letter (Appendix I). The length of the tool is such that it can be completed in less than 20 minutes. This is a second strategy used to increase the response rate or to decrease the risk of having the evaluation tools returned with a significant number of responses not marked Two weeks after the reminder letter, 45 tools (48%) had been returned with nine of them returned because the address was incorrect. Three tools were returned blank indicating that these families did not want to participate in the study. This left evaluation tools from 33 54 families (40%) for analysis. The expected response rate for mailed questionnaires is usually 25 - 30% and that rate can be increased by including self-addressed return envelopes and reminder letters as was done in this study (Burns & Grove, 1997). Telephone Follow-Up Telephone follow-up was considered in the proposal stage of this study. Because the sample size was small it was decided that I would wait to see the return rate and seek ethics approval later for follow-up if necessary. Telephone follow-up is often a method used to increase the return rate (Burns & Grove, 1997). In this study the response rate (48%) was good for mailed out questionnaires but there were a couple of reasons that further follow-up was necessary. The first reason was that considerable time (18 mos.-3 years) had elapsed since families had received the package and it was thought that non-response could have to do with the families' feeling that they could not recall having received the resource package or could not accurately recall it's contents. The second reason was the overly positive results received for the package via the mail. I wanted to be sure that all the negative responses were not the in the evaluation tools not returned. If this was the case it would greatly alter the findings of the study. Ethics approval was then sought for a telephone follow-up to the remainder of the families (48) which had not sent back the evaluation tools. Approval was sought from both ethics committees cited below to undertake a follow-up telephone poll to ask: 1) D i d you receive the evaluation tool? 2) D i d you remember receiving the educational package? If so, was it useful? 3) Was there a particular reason for not responding? ie. no time to f i l l out the 55 evaluation tool? Permission was granted. These became an additional source of data as I made calls to 48 families. Of these ten were lost to follow-up, seven were consistently not home, and ten did not remember receiving the resource package. I spoke with 21 families about my evaluation tool. E th ica l Considerations This study was reviewed and approved by the Children's and Women's ( C & W ) Research Review Committee and the University of British Columbia's ( U B C ) Behavioral Research Ethics Board, (see Appendices J -M). Confidentiality of the families was maintained by numbering the evaluation tools so that names were never involved in data analysis. These evaluation tools wi l l be destroyed five years after the study has been completed. In accordance with requirements of the U B C and C & W Ethical Review Committees the cover letter included with the tools provides a description of the study and an explanation of the researcher's expectations with respect to completion of the tool. Consent is implied in the completion of the evaluation tools by the families. The cover letter also outlines the fact that the tool wi l l remain confidential and anonymous and data gathered wi l l be used for study purposes only, and that only the researcher and her thesis committee chair, have access to the names of the families involved. The data are stored in a locked filing cabinet. 56 Design Points This evaluation study was conducted without a comparison group because the educational resource package was being given to all families whose child was diagnosed with epilepsy and there were no controls to draw from in the population. The purpose of this study is to assess whether or not the educational resource package was an effective resource for the families enabling them to have further knowledge of epilepsy and make them aware of resources and community supports available to them. It was also done to provide information as to how the package could be improved. Another limitation, as noted in Chapter 1, is the inability of some descriptive studies to make cause and effect statements (LoBiondo-Wood & Haber, 2002). I purposefully did not use a comparative group or pre-post design because we are evaluating the usefulness of the package against its objectives - which include appraising families' knowledge of resources and safety issues. A subsequent evaluation could be designed to gather data from families before receipt of the package and after, and have an ongoing evaluation ie. every six months families that received the resource package in the preceding two months would be sent an evaluation package. Summary This chapter described how this descriptive evaluative study was undertaken. Direction was taken from the E P E M in developing the educational resource package. The process of developing the tools used to describe the sample and to gather evaluative data was outlined. 57 Chapter 4 Analysis and Presentation of the Findings This chapter presents an analysis of the data gathered in this evaluation study. Four sources of data were gathered: data from Likert scales, closed-ended questions, open-ended questions, and telephone follow-up. The chapter wi l l begin by describing the analysis procedures for each of these data sets and wi l l then describe how the data was collected and collated. A profile of the participants wi l l be given as well as a description of the sample drawn from families gathered through the inpatient and outpatient clinics at B . C . C . H . and Epilepsy B . C . . The analysis is organized according to the research questions of the study. A description of the telephone follow-up and the results is also included. These sections are followed by a critique of the tool and a summary of the chapter. Analysis Procedures In analyzing the data I am seeking to understand whether or not the educational resource package met its objectives, whether or not respondents have understood the information they received, and whether they have used the package. I also hope to gain knowledge of any improvements to the package families feel needs to be made. A descriptive analysis of these data wi l l be undertaken and should yield information about the adequacy of information included in meeting the stated objectives. To begin analysis, an Excel database was created by a statistician and the data from the evaluation tools was entered as it was returned. A total of 45 questionnaires were returned. As mentioned previously, three were returned unanswered which means the recipients chose 58 not to participate, nine were lost to follow-up, and 33 were able to be entered in the study. Of the 33 entered in the study, nine do not remember receiving the educational resource package but two of these filled out the demographic data tool. There was one person that remembered receiving the package but did not read it as she discovered soon after that her daughter did not have epilepsy. In the end, this means that evaluation tools went out to 93 families and 23 (26%) completed the evaluation tool. The number of respondents (N) wi l l vary in each of the tables because while 23 respondents completed the evaluation tool, they did not necessarily answer all the questions. I chose at the beginning of the study to accept the evaluation tool as complete as long as the majority of the questions were answered. Initially, calculations of frequencies were made with data from the Likert scales and closed-ended questions and presented on frequency tables. The frequency tables were not easy to interpret so I opted instead for more descriptive tables. To assist with further analysis tables are set up according to each research question. The questions on the evaluation tool that correspond with the appropriate research question are listed in the tables. The number (N) of responses together with the percentages of answers given based on that N are presented. The data from the open-ended questions pertaining to each table is also analysed and presented. L i k e r t Scales This tool has 13 Likert scaled questions. Data analysis for the Likert scales is ordinal and thus the statistics are summary and nonparametric (Burns & Grove, 1997). The percentages for each response on the scale was calculated. In the final analysis, i f response 1 59 or 2 on the scale has an end score of >50%, I wi l l look at making definite revisions to the package. Responses of 1 on the Likert scale means "not useful at all","no, definitely not", or "none" depending on the question. Responses of 2 on the Likert scale means ""no, I don't think so", "no, not really", "some", or "not very useful". If the response 3 or 4 has an end score of >50%, I wi l l consider any suggestions made for modification or change to the package. Responses of 3 on the Likert scale meant "kind of useful", "yes, sort of", "most", or"yes, I think so" depending on the question. Responses of 4 on the Likert scales meant "yes, definitely", "all", or "very useful". Means are not calculated for the Likert scales' data because calculation of means presumes each response is equally separated in value and that the distances between values is equal. Closed-ended Questions Data analysis for closed-ended questions is descriptive using number of responses and percentages of each answer for each question. The data from closed-ended questions is specific and easily calculated. Open-ended Questions The open-ended questions were analyzed using content analysis. Patterns or common themes were identified and responses were categorized in these themes. These responses were organized together with the Likert scales and closed-ended questions for each research question. Profile of the Participants The demographic data of the families from the completed questionnaires is provided 60 in Table 2. As the table shows, the participants were primarily Caucasian, educated (past high school) professionals. Nineteen families had two adults in the home. There were slightly more male than female children and the children's ages ranged from 3.5-18 yrs. No participants reported difficulty with reading or understanding English. The participants mainly lived in urban settings. Table 2 - Demographic Data N Age of child with epilepsy 24 3.5 - 18 years (mean 9.9 years) Sex of child with epilepsy 25 Male 14 (56%); Female 11 (44%) Ethnicity 23 Caucasian 21 (91%); Hispanic 2 (9%) Number of adults in home 25 2 in 19 (76%); 1 in 5 (20%); 3 in 1 (4%) Occupation 24 10 (42%) Professional; 3 (12.5%) Trade; 3 (12.5%) Homemaker; 8 (33%) Other Language spoken 25 24 (100%) English Place residence 23 17 (74%) Urban; 6 (26%) Rural Description of the Sample Rate of Return A s noted previously, analysis of the data is based on the 33 evaluation tools that were returned. Nine respondents did not remember receiving the package but some gave demographic data. There was one person that remembered receiving the package but did not read it as soon after she found that her daughter did not, in fact, have epilepsy. For 61 those that read the package, they read it an average of three times. Presentation by Research Questions Research Question 1 : (Learning Objectives 1 - 7) The first research question addressed the learning objectives for the families. Learning Objectives 1 and 2 The question related to the first learning objective asked whether families understood the term epilepsy and all the respondents (22) did. The question related to the second learning objective asked i f families could differentiate between seizure types, 95% of respondents felt that they could do so. These two questions are shown in Table 3. Table 3 - Learning Objectives #1 and #2 N Yes No Do you know what is meant by the term epilepsy? 22 22 (100%) 0 (0%) Do you know the difference between partial and generalized seizures? 22 21 (95%) 1 (5%) 62 Learning Objective 3 The third learning objective addressed whether or not after reading the package the families appreciated the importance of seizure safety. As you can see in Table 4 most of the respondents felt that the package helped them with safety considerations. Almost all of the respondents felt that reading the educational package assisted them in having discussions with their child's teachers, care workers, etc. about the safety issues surrounding their child with epilepsy. Table 4 - Learning Objective #3 Do families appreciate the importance of seizure safety as a result of reading the package? N 1 No definitely not 2 No not really 3 Yes sort of 4 Yes definitely Yes No Q: Did the Epilepsy Education Package help you learn about the safety considerations associated with epilepsy? 22 - 1 (4.5%) 6 (27.5%) 15 (68%) - -Q: Since reviewing the package have you had discussions about seizure safety with your family or others as a result of reading the package? 21 19 (90.5%) 2 (9.5%) 63 Learn ing Objective 4 The fourth learning objective addressed the understanding by the respondents of the emotional and psychosocial issues faced by their child. Four questions were asked with the answers shown in Table 5. Of the respondents, 52% felt that the package enabled them to meet their child's cognitive or physical developmental needs associated with the diagnosis of epilepsy. Only 36.5% of the respondents felt that there was information in the package that definitely helped them identify some of these stressors, 36.5 % felt it partially helped them, 27% did not really find the package helpful in this regard and had suggestions for improvement. However, 67% of the respondents felt that the package gave them ideas about how to address these stressors With regards to better dealing with issues associated with epilepsy in the future, three-quarters of the respondents (77%) felt that the package did help them in some way. 64 Table 5 - Learning Objective #4 Do families understand some of the emotional and psychosocial issues for children with epilepsy? N 1 No definitely not 2 No not really 3 Yes sort of 4 Yes definitely Yes No Q: Do you feel that as a result of the educational package you are more able to meet your child's cognitive or physical developmental needs associated with a diagnosis of epilepsy? 22 12 (55%) 10 (45%) Q: Did the Epilepsy Education Package help you and your family identify some of the social and emotional stressors which accompany a diagnosis of epilepsy? 22 6 (27%) 8 (36.5%) 8 (36.5%) Q: Was there information in the package to give your family the ideas about how to address some of these stressors? 19 13 (68%) 6 (32%) Q: Do you and your family feel that as a result of the Educational Package you are better able to deal with issues associated with epilepsy now and in the future? 22 1 (4.5%) 4 (18%) 6 (27.5%) 11 (50%) 65 Learning Objective 5 The fifth learning objective focused on whether or not families understood the role of medication in the treatment of seizures and some of the common side effects. A s Table 6 shows, the majority of respondents found the package informative about the role of medications in the treatment and just over half felt that the package made them aware of possible medication side-effects. Table 6 - Learning Objective #5 Does the family understand the role of medication in the treatment of seizures and some of the common side-effects of the medication? N Yes No Q: As a result of the package do you feel you understand the role of medication in seizure treatment? 21 19 (90.5%) 2 (9.5%) Q: As a result of the information in the package do you feel you understand the common side-effects associated with the seizure medication your child is prescribed? 20 14 (70%) 6 (30%) 66 Learning Objective 6 The questions in the next learning objective (Table 7) asked whether or not the package made them aware of resources and community supports available to them. 71% of the respondents said that the package gave them some sort of idea of resources and supports available to them but the majority had not accessed any of these resources. One quarter of the respondents did not really feel the educational package helped them learn of resources available to them. A l l respondents stated that to some degree they knew where they could go to find information about epilepsy. Table 7 - Learning Objective #6 Does the family know where to go for further and ongoing up-to-date information on epilepsy and support groups and community resources available? N 1 No definitely not 2 No not really 3 Yes sort of 4 Yes definitely Yes No Q: Did the Epilepsy Education Package help you learn about different resources available to you and your family? 21 1 (5%) 5 (24%) 11 (52%) 4 (19%) - -Q: Have you used any community resources suggested in the package? 18 - - - - 16 (11%) 2 (89%) Q: If you needed information about epilepsy would you know where to find it? 23 12 (52%) 11 (48%) There were two open-ended questions associated with this objective. The first question asked which community resources in the package had the family used and the 67 second asked why the family had not accessed any of the listed resources. The first question was answered by three respondents (13%) and these families had accessed Epilepsy B . C . and the Community Liv ing Services. The latter respondent was pleased because her child subsequently received a behavioral support worker and went on the join the Special Olympics through the Chi ld Development Centre. One respondent tried a suggested support group but didn't continue as she had not enjoyed the experience. For those 15 respondents (65%) that did not access support services it was for a variety of reasons. Six of the 15 respondents (40%) felt that they had no need to access a support group. Three respondents (20%) lived in places where they had no available resources and two responded that they had not been given information on supports available. One respondent said that her family practitioner husband was able to answer all her questions and another felt that she received enough support from her specialist. One respondent found accessing the support systems inconvenient and another responded that the information we included for supports was outdated and so accessed the information on the internet. 68 Learning Objective 7 The last learning objective was assessed by asking whether despite the diagnosis the family felt they had some control over their lives. Table 8 shows that over half of the respondents responded that the package provided helped them inform others about epilepsy. Just over half of the respondents (59%) indicated the package helped them in their interactions with health care professionals or teachers. Over half the participants (60%) responded that the package helped them clarify other's misconceptions about epilepsy. There were four open-ended questions associated with this learning objective. Table 8 - Learning Objective #7 Do the families feel that despite the diagnosis they still have some control over their lives? N Yes No Q: Has the Epilepsy Education Package helped you inform others about your child's diagnosis of epilepsy? 22 17 (77%) 5 (23%) Q: Did the information you received help you in your interactions with health care professionals or teachers? 22 13 (59%) 11 (41%) Q: Did the information you received help you clarify other's misconceptions about epilepsy? 20 12 (60%) 8 40% Two of the open-ended questions associated with this learning objective addressed the issues regarding informing others of the diagnosis of epilepsy. The first asked "how" the educational teaching package had helped inform others about their child's diagnosis of epilepsy. The second question asked "why" the package had not been helpful in this regard. For the first question, 15 out of 23 respondents (65%) answered. The most common reason 69 the package had been helpful in their view was that it enabled them to have discussions with teachers, care workers, and other family members. They felt that after reading the information they better understood the condition, the first aid and safety considerations, and had a better use of the correct terminology to discuss these things. One of the respondents gave it to a friend to read after her child was diagnosed with epilepsy. One respondent felt that it gave her a role model for others to follow during her child's seizures. One respondent felt it helped to put everything into clear statements. The second question was responded to by four respondents (17%). One woman wrote that her husband was a family practitioner and she relied more on his expertise to engage in conversation with others. Another said that the package did not contain enough information on the actual mechanics of seizures so he ended up using the internet as his source of information. A third respondent said that because no one went over the package with her she was left confused and that it made her question her lack of knowledge which she thought was dangerous. The last respondent received the package three years after the child's diagnosis and felt their child's seizures occurred too infrequently for the package to be of any use and that it was not necessary at school. The third open-ended question related to how the information in the package helped with interactions with health care professionals or teachers. Eleven of the 23 respondents (48%) answered this question and half of the respondents (N=6) felt that the package was set up so that it was easy for them to just take to discuss with their child's teachers. Two respondents (9%) stated the information provided helped them understand their child's seizures, causes , how to deal with them, and the terminology to use in their discussions with 7 0 the professionals. One liked the fact that it gave them a basic knowledge of tests and procedures, another that it gave first aid information to pass on, and another that it enabled them to better understand what questions to ask and what information would be sought from them by the nurses and doctors dealing with their child. The last question asked whether the information helped them clarify the misconceptions of others with regard to their child's diagnosis. Ten respondents (43%) answered this question and the most common answers were that the package provided the appropriate information to use to dispel other's misconceptions and that it gave them important basic information to share with others. Another liked the fact that the package gave ideas of activities that their child can participate in. 71 Research Question 2 : "Does the mode of receipt of the package (i.e. In the clinic or through the mail) influence parents' perceptions of its usefulness?". The results from this research question are addressed on Tables 9 and Table 10 below. Table 9 shows that most of the educational resource packages were given out in the outpatient neurology unit at B . C . C . H . and, interestingly, over half of the recipients do not remember having a health care professional review the package with them. Half of the respondents had all family members read the package and of the half that did not, it was primarily the mother or the mother and father that read it. Table 9 - Receipt of Educational Resource Package Where did you receive the teaching package? 22 17 (77%) Hospital outpatient unit 3 (14%) Hospital inpatient unit 2 (9%) B.C. Epilepsy How long ago did you receive the package? 22 1 - 4 years (average 2.8 years ago) Did you have a health care professional review the package with you? 23 9 (39%) Yes; 14(61%) No Did all family members read it? 23 11 (48%) Yes; 12(52%) No 72 The majority of respondents received their packages in the neurology outpatient unit, 2 in the inpatient unit and one from Epilepsy B . C . There did not appear to be any relationship between dissatisfaction and the location in receiving the package. Of those respondents that found the educational package very useful (N=16) 12 respondents (75%) received it in the outpatient clinic. Table 10: Usefulness, mode of receipt and review of package Usefulness score N Mode of receipt of package Health professional review Outpatient Inpatient BC Epilepsy Yes No 4(very useful) 16 12 2 1 9 7 3(kind of useful) 5 3 1 1 0 5 2(not very useful) 1 1 - - 0 1 l(not useful at all) 1 Not remembered Not remembered 73 Research Question 3 : "Are there particular segments of the package that parents find to be particularly useful?" Of the respondents 70% found the package "very useful" and stated that there was enough information. These same respondents indicated the information was relevant and up-to-date. (See Table 11). The first open-ended question associated with this research question asks families what information was the most useful for them. A l l respondents answered this question. The families reported finding the information on medications, safety, first aid, reporting seizures, and drug side effects all useful. A number of families liked the fact that the package gave them information on differentiating between the different seizure types. One respondent felt that it helped them explain their son's condition to others. Another felt that it helped them keep their home environment safe and another that it included information for babysitters. One respondent felt that it gave information on the importance of independence and how to help their child gain it. Four respondents (17%) felt that all the information included was useful. The next open-ended question asked what information in the package the families found least useful. Four respondents (17%) out of a total of 13 respondents found there was no useless information. One found the glossary of terms was least useful and another found the medical information least useful as the respondent felt that "we as caregivers need to have complete information not bits and pieces". Two respondents (8%) did not recall, two (8%) wrote "—", one respondent answered "none" and one wrote " N / A " . The third open-ended question related to this research question asked what information the respondent would have liked in the package that was not included. Six 74 respondents (26%) answered and one felt that it wouldn't have mattered how much information was included, at the time of her child's diagnosis she couldn't get enough. Another wanted more information about the actual term "seizure" and information about the brain and seizures, one wanted information on hospital methods, another on more local resources and supports, and the last wanted information on seizure surgery so went to the internet. , Table 11 - Research Question #3 Are there segments of the package that parents find to be particularly useful? N Not useful Not very useful Kind of useful Very useful Q: How would you rate the usefulness of the Epilepsy Education Package that you received? 23 1 (4%) 1 (4 %) 5 (22%) 16 (70%) N None Some Most All Q: How much of the information in the package was new? 21 - 5(24%) 9 (43%) 7 (33%) How much of it was a review of previous teaching? 20 4 (20%) 11 (55%) 4 (20%) 1 (5%) No definitely not No, not really Yes, sort of Yes, definitely Q: Was the information you received relevant? Q: Was the information you received up-to-date? 22 22 -1 (4.5%) 1 (4.5%) 7 (32%) 7 (32%) 14 (63.5%) 14 (63.5%) Yes No Q: Did you feel you received enough information? 22 15 (68%) 7 (32%) 75 Research Question 4 : "Do parents have suggestions regarding how the educational resource package might be improved?" The results for this research question are found in Table 12. The open-ended questions for this research question have been described in the results from research questions 3 and 1. Over half of the respondents (68%) felt that they received enough information from the educational package. The educational package helped 77% of the respondents inform others about their child's diagnosis. Of the respondents, 91% felt that they would definitely or probably suggest the educational package to a friend with a child with epilepsy. With regards to time of receipt of the package, 68% felt this should be at the time of diagnosis and 32% when the diagnosis is considered. 76 Table 12 - Research Question #4 Do parents have suggestions regarding how the educational resource package might be improved? N Yes No Did you feel you received enough information? 22 15 (68%) 7 (32%) Has the package helped you inform others about your child's diagnosis? 22 17 (77%) 5 (23%) N >6wks after diagnosis 2-6 wks after diagnosis At time of diagnosis When diagnosis considered When do you think would be the best time to receive the package? 22 15 (68%) 7 (32%) At which of these times did you receive the package? 23 6 (26%) 1 (4.5%) 15 (65%) 1 (4.5%) N No definitely not No, I don't think so Yes, I think so Yes, definitely If a friend's child was diagnosed with epilepsy would you suggest our package to him/her? 22 1 (4.5%) 1 (4.5%) 5 (23%) 15 (68%) The evaluation tool asked two open-ended questions at the end. The first one asked what the respondents liked best about the package. Sixteen respondents (67%) answered and their answers fell into six areas. Five of the respondents (31%) liked that the package was informative, direct, useful, addressed seizure safety, and was information that they could trust. Four of the respondents (25%) liked that it was easy to read, addressed common questions, was ideal for all ages, and addressed again, seizure safety. Two respondents (13%) liked the layout, one found it to be a good reference tool. One respondent liked the comprehensiveness of the package. One respondent was quite negative and felt the package 77 hardly helped and that they would have benefited from someone reviewing it with them. The last question asked the respondents to list one thing to change about the package if they could. Twelve respondents (50%) answered the question and two of them felt they wouldn't change anything. One respondent wanted more information on medications, side effects, treatments, more age appropriate brochures, and information for siblings. Another wanted someone, preferably a doctor, to review the package with them. One wanted a video to accompany the package, another two wanted web sites listed, another more resources and supports listed, and another wanted it distributed to schools. Telephone Follow-Up Telephone follow-up was done with 48 participants. It was done to better understand why there was such a large number of non-respondents, and whether or not they had a negative perception of the package. The questions asked on the telephone survey were: 1) D i d you receive the evaluation tool? 2) D i d you remember receiving the educational package? If so, was it useful? 3) Was there a particular reason for not responding? i.e. no time? The answers to these questions are summarized in Table 13. The primary reason given for not completing the questionnaire was the respondents did not have the time. Five respondents remember receiving the package but felt that they had received it so long ago (3 years) that they were not able to accurately respond to all items. Ten (21%) were lost to follow-up. Ten families (21%) did not remember receiving the package when their child was diagnosed. There were 14 families (31%) who read it and found it useful. 78 Table 13: Telephone Contacts Number N No data obtained 27 Lost to follow-up 10 No package received 10 No contact obtained 7 Package received Package useful Package not useful No response because of time interval from receipt 21 14 2 5 The data obtained from both the questionnaire and the telephone contact is combined in Table 14. This shows that out of the original 93 families to whom the questionnaire was sent 26 (28%) had been lost to follow-up; 19 (20%) did not remember receiving the package and 3 (3%) chose not to participate. This left 45 respondents who had received the package. Of these, 35 (78%) found it useful; 4 (9%) did not find it useful; 5 (11%) felt unable to comment due to the length of time elapsed from receipt; and 1 (2%) child was found not to have epilepsy. Table 14: Combined Questionnaire and Telephone Contact Data Evaluation Tool N N Total number sent 93 Data obtained 45 (48%) Package useful 35 Package not useful 4 No response due to time interval from receipt 5 Diagnosis incorrect 1 No data obtained 48 (52%) Family lost to follow-up 26 No package received 19 Non-participation 3 79 Cri t ique of the Tool In developing the evaluation tool I chose to use both open-ended questions as well as Likert scaled and closed-ended questions. M y assumption was that the data that I would obtain with these three types of questions would be most complete. One problem identified with the tool was that not all of the questions were answered. I chose, as noted previously to include the evaluation tool results i f the majority of the questions were answered. This is congruent with the literature (Burns & Grove, 1997). It appeared, upon analysis, that many respondents chose not to answer the open-ended questions. This may be due to the added length of time needed to complete the evaluation tool. From the telephone follow-up with the non-responders, as noted above, many families felt they did not have the time to complete the survey and as one mother put it, "when I see anything like that in the mail I just ignore it". Another mother felt that she did not want to answer the evaluation because it brought back too many memories of the time of diagnosis of a condition she did not even like to discuss. She did admit however that at the time of receipt of the package she read most of it and it was informative. In terms of the responses that we did get it seemed that the tool gave us information about the topics of interest to us. Some of the questions did not provide us with particularly useful information in the end. Careful revision of the questions paying more attention to what the possible conclusions wi l l mean to the study need to be done i f the evaluation tool is to be used again. For example, in the first research question the evaluation tool asks whether or not the family knows where to find needed information about epilepsy. The question does not allow clear cause and effect between i f the respondents knew where to go it was definitely because of 80 the educational package. It is hard to draw conclusions for this question. Critique of the Evaluation Process This study was successful because it appeared to answer the research questions it set out to answer. The literature review showed that there are few evaluation tools available for evaluating written educational materials. There is a lot written about the value of educating families in more than one method as well as the power of reinforcement of teaching that written materials contribute. It was difficult to develop an evaluation tool that adequately addressed the learning objectives for the families for our resource package. This study had an expected rate of return (36%) which could have been improved by doing the evaluation within one year of receipt of the package, by making the evaluation toolshorter and omitting the open-ended questions (although they did give valuable information and suggestions of areas of strength and areas for improvement). It would have also cut down on the number of families that were unable to be contacted (20%) because they had moved. Summary This chapter described the presentation and analysis of the findings. Using a method of analysing both the written and verbal data together (stratified convenience) I found that I was able to contact 64 families (69%) of the 93 families that made up my sample. Of those contacts, 19 (20%) did not remember receiving the package. Using stratified convenience, I found that 35 respondents (78%) out of a total of 45 respondents read the package and found it useful to some degree. There were some ways that the study could have been stronger, ie. 81 conducting it within one year of the families having received the package but overall the analysis of the findings shows that the study met its objectives. 82 Chapter 5 Summary, Conclusions and Implications This chapter begins with a summary of the evaluation study conducted to determine the usefulness of the epilepsy educational resource package for families. The evaluation took place over a two-month period. Following the summary of the study this chapter goes on to include a description of participants and the conclusions and discussion related to each of the study's research questions. Implications for research and practice follow. Summary of the Study This descriptive evaluation study used a post-test method to determine the usefulness of an epilepsy educational resource package for families whose child was recently diagnosed with epilepsy. There is evidence in the literature that giving families written materials as an adjunct to verbal instruction or teaching is beneficial when a new diagnosis is being discussed. "There was a consensus that leaflets were used in consultations to clarify, reinforce, remind and to review information" (Barlow et al, 1996, p. 278). It is often difficult to understand the best time to receive this additional information from the family's perspective. Nurses assume that it is at time of diagnosis. Little is written about the evaluation of written materials given to families especially with a diagnosis of epilepsy. In the opinion of Barlow et al (1996) "Despite patient preferences for written information, leaflets for specific medical conditions have seldom been evaluated" (p.276). A descriptive method of evaluation was chosen for this study because this method is effective when the information related to outcome of a program or intervention is being 83 sought. (LoBiondo-Wood & Haber, 2002). This study was broadly concerned to know i f an educational resource was useful for families. More specifically, it investigated whether or not the educational resource provided further knowledge of epilepsy, information regarding community supports and resources for families, and whether it helped families cope better with the diagnosis. The need for education resources were identified from consultation with clinicians at our pediatric tertiary center and a review of the literature. The literature review substantiated the value of education in helping patients/families overcome the stigma and sense of loss of control associated with a diagnosis of epilepsy. Increasing families' knowledge base allows them to begin to alleviate some of the misconceptions about epilepsy that may be held by those around them. The literature review also reinforced the belief at B . C . C . H . that family-centered care is paramount in establishing collaborative partnerships with both the children and their families. A diagnosis of a chronic illness like epilepsy not only affects the member diagnosed but the family as a whole. B y including the family in an educational endeavor we better serve the child and the community. In order to first develop the resource package, a model for development needed to be found and the model that proved useful for our clinic goals was the Evaluating Printed Educational Materials Model ( E P E M ) developed by Bernier and Yasko (1991). That model was used to determine what steps to take in developing and evaluating appropriate materials for the package. Following delivery of the package the next step of the evaluation was developing an evaluation tool. Evaluation of written teaching materials has been cited in the literature as being primarily concerned with "readability, patient comprehension, and the 84 impact on patient knowledge" (Barlow et al, 1996, p. 276). A search was undertaken for an evaluative tool for our resource package. The Client Satisfaction Questionnaire by Larsen, Attkisson, Hargreaves & Nguyen, (1979) was adapted for use in this study. Because the concept that Larsen et al wanted to assess was satisfaction and this focus did not fit with our purpose, only the template was used as a starting point. The last step was to identify the sample. The names of 93 families were compiled over an 18 month period from the inpatient neurosciences unit and ambulatory neurology clinic at B . C . C . H . as well as from Epilepsy B . C . After Ethical approval was obtained, a cover letter outlining the purpose and procedures for the study was sent out to families along with the evaluation tool. A two-week turnaround time was given and a reminder letter was sent. As there was a poor response rate after two weeks, which is often the case with postal surveys, a telephone survey was conducted. This survey was to evaluate whether the families had received the questionnaire, their reason for not participating, whether they remembered receiving the resource package, and whether they read the package and found it useful. Overall, the results show value in having the families receive an educational package at time of diagnosis. There are, however, some refinements to the contents of the package and processes of working with these families that are recommended. Summary of Participants Participants from the study were drawn primarily from the inpatient neurosciences unit and outpatient neurology clinic at B . C . C . H . but also from Epilepsy B . C . The method 85 for selecting participants is outlined in Chapter 3. A total of 93 families were sent evaluation tools. Overall, combining both written and verbal responses, 64 out of 93 families participated in the study. A completed evaluation tool was obtained from 33 of the 64 families. These data were analyzed with respect to the full range of research questions. Twenty-four respondents (26%) completed the full evaluation tool. Telephone follow-up was done with forty-eight families who did not return the evaluation and of those, twenty-one families were reached for comment. These comments were included in the study. Conclusions and Discussion There were a number of reasons for embarking on a study to look at the usefulness of our epilepsy education for families. The study demonstrates that overall the epilepsy educational resource package for families whose children have been diagnosed with epilepsy is useful. Families appreciated the content as well as the layout of the package. Families did however have a number of recommendations for improvements. These are laid out in this section beginning with the conclusions and discussion related to the concepts identified in the literature review and then to the research questions. For each research question conclusions come first followed by discussion. Families' experiences as they have been verbalized or written are included. One of the first concepts related to caring for families with chronic illness is the understanding that there is a sense of loss of control for them and one of the ways in helping these families is by trying to foster empowerment. As Wallerstein & Bernstein, (1988) state in Duncan (1996), 86 These partnerships between professionals and communities, one of the foundations of primary health care, are fostered through a process of empowerment, wherein individuals and groups gain mastery over their lives and take action on conditions of l iving that affect their health (p 311). The results would support the idea that the educational package increased some families' feelings of empowerment. One mom wrote, " A l l the information was useful as we knew nothing about epilepsy prior to my son's seizures....Dispelled fears that my son's life would change drastically. He was worried his "teen years" would become different from his friends. Sports is O K ! ! This was a big plus for him. He can still drive a car!". This example illustrates the sense of relief that education can bring to people. While some of the families felt that this package was not in-depth enough, for others it was a perfect beginning and base to build upon. The above example also supports the notion that sometimes the information can help them minimize their sense of loss of control (Mohr, 2000). The above quote indicates that despite the diagnosis both she and her son, with the information they have been given, can still look to a future much as they had imagined. Interestingly, however, telephone follow-up revealed one mother who received the resource package, read it and found it useful, but did not want to f i l l out the questionnaire when she received it because it brought it all back for her. She does not like to remember the time around her son's diagnosis of epilepsy and she still does not like to talk about it. For this mother English was not her first language so it is hard to fully appreciate what information she obtained from the package. As it stands it does not look like the package empowered this mother. As discussed in Chapter 2, stigma is often an issue for people with epilepsy. B y 87 educating families about epilepsy one of the aims was to help them dispel the myths of others which is often the underlying cause of stigma (Baker et al, 1999; Lefley, 1992). Aytch, Hammond, and White (2001) in their study found that "a number of parents reported that relatives and friends sometimes had misinformation and believed myths about epilepsy" (p. 282). A similar finding arose in this study. One family wrote, "The package provided us [with] the information required to dispel other's misconceptions about epilepsy.. .it gave us the information to help us explain our child's condition." This package has certainly contributed, for some families, to the knowledge base that they need to begin to dispel the fears and misconceptions of others with respect to epilepsy. In this way, over time, it is hoped the stigma associated with the diagnosis may begin to lessen. Another wrote, "When my daughter has a seizure around other people these people want to shake her, blow in her face, and get quite upset with me because I am not doing anything to bring her out of the seizure". For this mother the information gave her a back-up when explaining to others what is the proper thing to do in the event of a seizure. Another concept important to these families is that of family-centered care. For these families, as noted previously, the diagnosis extends beyond the child with epilepsy. It is important that health professionals take that into consideration when educating these families. One parent answered the question about how the package had helped her inform others about the diagnosis by writing, "Teachers, grandparents, siblings. We made copies of the pamphlets and distributed them to family as well as the school. We felt everyone should have a better understanding of epilepsy". The last concept that was reviewed for the purposes of this thesis was the need for 88 support and resources in the individual's own community after diagnosis. It seems that while our package introduced some resources and supports available to families there is still more work that could be done in that area. One parent wrote that while they found the package addressed a lot of common questions, was easy to read with ideas for all ages, they could benefit from "more information on resources ... .either in terms of web sites, books, family and support organizations". One family went to a suggested community support group and didn't like it. Another couple of families found that the support groups were either inconvenient for them to get to, or that there was nothing available to them in their community as it was too small. Two families stated that the package did not give them information on such things. These are not uncommon responses given the literature in this area. The overall results indicate that the majority of the families found the educational resource package to be useful. Most of them would recommend it to a friend i f his/her child was diagnosed with epilepsy. Over half of the respondents found that the best time to receive the package was at the time that their child's diagnosis was made, and for the most part that is when the families received it. This is substantiated in the literature by Aytch et al (2001) when they found in their study: "the most pronounced periods of anxiety, fear, and disruption in family routines occurred in the early months after the onset of seizures" (p. 281) and "parents coping with the early childhood seizures have specific needs for information and support, particularly in the early period after onset" (p. 283). In this study, it was found that most of the families were given their educational resource packages in the neurology outpatient clinic. Only a third of the families 89 remember having a health care professional review the package with them. This pattern could be explained by what we do know about the time of diagnosis. The literature states that there is so much information given to a family on the day of diagnosis both by the physician and the nurse that the family has trouble remembering receiving some of it (Barlow et al, 1996). The same could be true for remembering receipt of our package that same day. In addition, there were a number of comments and responses that indicate the information in the package had not been reviewed with the family. One respondent wrote, "I felt extremely rushed and frustrated when at the clinic. I cried when I came home and decided to find my own information". She had other comments about the lack of some contents of the package which leads me to believe her package had not been compiled completely. In commenting on things liked best about the package one respondent wrote "It hardly helped at all. Although I understand things visually better I needed someone to go over the package in order to get a better understanding". This same respondent wrote that one thing to change would be " A doctor behind each package to go over it maybe in a group setting". This person obviously needed more that just the receipt of a package in order to feel comfortable with her child's diagnosis. It may be that this person had a lot of information given to her at one time without being able to take the time to fully comprehend it. I think it is an important reminder that all people do not learn in the same way or at the same pace. Often people do not leave feeling comfortable with the diagnosis of epilepsy and may need an opportunity at a later date to ask questions and more fully assimilate the information. Some people need much more supportive intervention than others. 90 Research Question 1 : (Learning Objectives 1 - 7) Learning Objectives 1 and 2 The first two objectives dealt with understanding the term epilepsy and understanding the differences between seizure types. Conclusions It appears that families who read the package had an understanding of epilepsy and the differences between seizure types. Not surprisingly, the majority of respondents felt that they understood both of those. The package included factual information and this particular information was also likely the focus of discussions with health professionals in the clinic. A few families indicated they found other sources (ie. professional textbooks, websites) more useful. The parents in the sample were generally well educated with over 39% having post secondary education. It is possible they sought explanations that were more in depth from other sources. Discussion It was important that the package assist the families in understanding what is meant by the term "epilepsy" and the different types of seizures. It appears that all of the respondents thought the package helped them understand the term "epilepsy" and the majority understood the difference between seizure types. This would indicate that the information on epilepsy and seizure types included in the package was helpful and appropriate. The majority of families felt that most of the information included was new to them and that only some of it was a review. From the evaluation tool, it is difficult to evaluate whether that understanding came as a result of reading the 91 pamphlets and information contained in the package or whether the package reinforced for them things they already knew. Learning Objective 3 The third objective addressed seizure safety. Conclusions Almost all of the respondents felt that the educational package benefited them in this respect. A number of parents commented that not only did they find this information helpful, this information they shared with others like teachers and family members. This suggests safety is a key concern of families. Discussion In terms of appreciating the importance of seizure safety the majority of respondents found the package very helpful. When asked what information was most useful one mother wrote, "how to keep the area in the home safe as well as to help keep my son's independence.. .1 was able to use the information to inform my son's teachers on how to handle my son i f he were to have seizures in class...". The issue of seizure safety was found to be a frequently raised issue for parents of children with epilepsy in the explorative study by Aytch, et al, (2001). It is a positive finding that our package served to address one of parents' greatest sources of fear and anxiety. Learning Objective 4 The fourth learning objective was concerned with the emotional and psychosocial issues that a child with epilepsy and his/her family often face. Conclusions 92 The package helped the majority of families identify social and emotional stressors and address these. It also helped families better deal with the issues associated with epilepsy and inform others about the diagnosis. It did not appear to alter the ability of the family to meet the child's cognitive or physical developmental needs. There were no open-ended questions associated with this objective. In order to address how we might better assist families once they have identified stressors it may have been helpful to include some. Discussion Half of the respondents indicated that the package helped the families meet their child's cognitive or physical developmental needs associated with a diagnosis of epilepsy. Half of the respondents felt that the package helped them identify some of the social and emotional stressors which accompany a diagnosis of epilepsy and most of them felt that the package gave them ideas about how to address some of these stressors. Less than half felt that the package would better help them deal with the issues associated with a diagnosis of epilepsy. These then are areas that require more examination especially since it has also been found to be a common request of parents (Aytch et al, 2001). It may be that the resources provided were too general and each child's development while proceeding through similar stages may require more specific information. Meeting this need may require more references like an annotated bibliography, and/or an interview with the family by either the Clinical Nurse Specialist or clinician. Lea rn ing Objective 5 The fifth learning objective was concerned with the families understanding the 93 role of medication and to a lesser extent the side effect profile. Conclusions Again, this is one area that teaching may have been done with the families by various health professionals prior to them reading the package. The families often appear to have considered the role of medication in their child's seizure management even before they have come to clinic. The parents in our sample are well-educated and may have done reading outside of the resource package. Many times they have definite views about the role of medication and are not keen to have their child on medications if there are other options. Discussion It appears from the results that the overwhelming majority (90%) of respondents felt that the package helped them understand the role of medication in their child's seizure management. Over half of them felt that they better understood the common side effects associated with the anticonvulsant medications. Both of these questions are worded "As a result of the information in the package..." so the conclusions can be drawn, but again, it is assuming too much to think that the package necessarily provided all new information to these families. Either way, reinforcement of previous teaching is always valuable. Again, these are encouraging findings as Aytch, et al, (2001) found this as an important information need of families. Learn ing Objective 6 The sixth learning objective addressed the issues of social supports and community resources available to families with epilepsy. 94 Conclusions While the majority of families were able to identify supports and resources available to them as a result of reading the package, a very small number actually accessed them. A l l of the families knew where they could go to find out more information about epilepsy i f they desired. On reflection and consideration of the telephone data, connecting with resources is likely one of the most difficult challenges to overcome with print material. Discussion The responses here indicated that while the resource package did identify resources and supports for the families, the families did not necessarily explore their options. The literature suggests that i f families did access suggested supports they might find them helpful: Many parents reported that opportunities to talk to other parents of children with a seizure disorder were helpful. Although parents recognized that the nature and circumstances of seizures could vary substantially across families, the opportunity to talk with other families that at least shared some aspect of their experience was beneficial (Aytch et al, 2001, p. 282). The majority of families felt that they would know where to go for further and on-going up-to-date information on epilepsy and support groups and community resources available to them. A small percentage (18%) of respondents used some of the community resources suggested to them in the package. Lea rn ing Objective 7 The seventh learning objective asked whether or not the families felt they still 95 had a sense of control over their lives despite their child's diagnosis of epilepsy. Conclusions The package enabled families to inform others about the diagnosis. It did not necessarily play a role in helping with interactions with health care professionals or teachers or in clarifying other's misconceptions about epilepsy. These findings suggest that information on these topics is needed. Discussion The results indicate that there is still room for improvement regarding the families' sense of control after diagnosis, (ie. the educational resource package aided families in engaging in conversations with others about epilepsy but did not necessarily dispel all misconceptions). One mother felt the information helped clarify misconceptions when she wrote, " . . .since I had facts to back me up that my son isn't mentally impaired as they first assumed". One third of respondents indicated that the package helped them inform others about their child's diagnosis of epilepsy. Half of the respondents felt that the information received in the package helped them in their interactions with health care professionals or teachers and that the information helped them clarify other's misconceptions about epilepsy. Almost all respondents (90%) found that as a result of reading the package they were better able to have discussions with their child's teachers, care workers, etc. about the safety issues surrounding their child with epilepsy. The resources included relating to this theme were possibly the most effective and useful. One respondent wrote, "I've had detailed discussions with my daughter's teachers and teaching assistants as well as her respite care providers.. .they know what to look for in a seizure and what to expect...". 96 Research Question 2 : Does the mode of receipt of the package (ie. in the clinic or through the mail) influence parents' perceptions of it's usefulness? Conclusions There did not appear to be any relationship between the place of receipt of the package and the perception of its usefulness in that most parents were positive about the contents. However, despite the fact that the majority of respondents received their package in the outpatient neurology department at B . C . C . H . , only half remembered having had a health professional review the package with them. In all instances where a family recalled that a health professional reviewed the package with them it was rated as very useful. In addition, the follow-up telephone calls revealed that many of those who did not respond to the evaluation tool did not recall having received the package until probed by the interviewer. Also, a number of families commented on how busy and hectic their lives were. This suggests that while the format lends itself to being read at one's leisure and/or reviewed as the need arises, families may benefit from an opportunity to review materials with professionals after receipt (ie. six weeks later). Discussion It appears from the results that while it did not matter where the family received the package, they found having the opportunity to review it with someone of benefit. This result could partly relate to the fact that, as suggested by some of the comments under learning objectives #5 and #7, families welcome any information that they receive. As one respondent answered, "When my son was diagnosed all I wanted was to keep reading. I couldn't stop looking for information". 97 Research Question 3 : Are there particular segments of the package that parents find to be particularly useful? Conclusions For the most part they found the information relevant and up-to-date. The majority felt that most or all of it was new information and very little a review of previous teaching. Different families appreciated specific segments of the package but the overriding themes were safety, first aid, medication information, and reporting seizures. Discussion As mentioned previously, most respondents found all aspects of the resource package helpful. The areas of seizure safety, first aid, and medications were repeatedly mentioned by respondents as important, and the information appreciated. "I found all the information very useful, and it was all easy to read and understand". The most useful information was the "definitions, descriptions, [it was] information you could turn to from time to time". The telephone follow-up revealed much the same information in this regard. One mom found the medication and side-effect information especially useful and that she still uses the package a lot as a resource to turn to. One widower admitted that he had not read the information when he received it, in fact just his son and mother read it. Upon receiving the questionnaire he picked it up, and wants to read it fully as he had not appreciated all the useful information contained in it. He wished he had read it before as he may have picked up on some of his son's seizures earlier. He stressed that he felt it important that the package be reviewed with parents regularly and that age appropriate materials be added as the child grows as the issues 98 for the child and family do change. This was one of the intents of the format of the package - that it would grow and change with the family. It is clearly one of the areas for follow-up. These themes are echoed in the study by Aytch et al (2001). Research Question 4 : Do parents have suggestions regarding how the educational resource package might be improved? Conclusions One third of the respondents felt they could have received more information. The main suggestions included internet sites, information for siblings, and further information on community supports and resources. Most respondents felt that the package should be received at the time of diagnosis which is when the majority did receive it. Discussion We asked the families what they liked best about the package and one thing to change. Overall, most families found the layout and the readability of the package was useful. Comments about its usefulness included, "It was a good reference tool for us and our family"; "Being able to get some knowledge about epilepsy immediately upon finding out he had it"; "The availability of it. It was concise in its explanations"; "[It gave us] the feeling that a lot of work had gone into it by professionals. I could trust this information"; "Ease of reading; addressed a lot of common questions; ideas for all ages; how to ensure safety during a seizure"; It was clear and precise. Very easy to understand from a layman's point of view". In terms of things that respondents would like to see changed, "More information for the siblings to read at an age appropriate level" and "more information on resources...in terms 99 of web sites, books, family and support organizations". This is also a need substantiated in the literature (Aytch et al, 2001). The majority of the families found the package to be useful. They felt that it contained enough information which was both relevant and up-to-date. The implications for these ideas from respondents wi l l be addressed in the implications section of this chapter. Implications for Clinical Practice and Family Education Resource Package Based on the responses to the evaluation it would be worthwhile to continue using the educational package as a resource for families. While comments such as, "I liked the layout with sheets layered for easy access", "It was well laid out to look up information. Brochures are concise and easy to read/understand", and "Convenient folder to keep everything in!!.. .Clear, simple, informative" indicated most respondents liked the format of the package, there were valuable suggestions made for improvement as noted in the discussion section. One of these suggestions came from a parent who wrote, "The package must have a video accompanying it. Some people are visual. Watching a child having a seizure on a video is different than reading it. Adopt the Internet. Websites about epilepsy should be included in the package". These suggestions are very helpful. A reference list or annotated bibliography from the B . C . C . H . family resource library for videos, books, websites, might be beneficial for families. Undertaking a search of the literature to better understand the impact of epilepsy or chronic illness on siblings might be valuable. It would be important to include some 100 information for siblings in the package as well as an annotated bibliography outlining where families could go for further information in this regard. Increasing the numbers of suggested resources and supports for families is seen as a positive intervention for most respondents. The reason that some felt that the package did not contain resources could have been a product of the person compiling the package. Providing information about resources and support for families is recognized to be important by our clinic team. At the conclusion of this study the results wi l l be presented to the neurology team and a reminder of how the package is to be compiled to make it individualized wi l l be given. It is often difficult to keep abreast of all of the different supports available to families in the different communities and this would be another area that needs more exploration. It appears that while efforts were made to inform families of their options in this regard many of them did not take advantage of these options. Linking families up with each other when we see them in clinic such as is our practice in the Epilepsy Surgery Program may be helpful. It also appears beneficial to have someone review the package with the family. Another idea for exploration would be considering forming an evening support meeting a couple of times a year to invite families to come to review the package with a health professional who would be available to answer questions. Epilepsy B . C . has recently undertaken initiating "Fireside Chats" as a form of support for individuals and families to come together and chat. Each evening has a different topic. It w i l l be interesting to see i f this turns out to be valuable to families. As a means of better clarifying the misconceptions of others one mother felt the package could go further by being available to teachers, 101 schools, and the public at large. In our clinic currently, we are often asked by public health nurses or teachers to forward copies of the package for educational purposes. Perhaps it should be used more widely and available to more than just the families of the child with epilepsy. One reason that we were cautious in our distribution is that often epilepsy or seizures are misdiagnosed and the child with a febrile seizure (commonly outgrown), while benefiting from the seizure safety information, is not considered to have epilepsy and the added information may cause unnecessary fears and concerns. Implications for Research Further research could be conducted on the timing of receipt of information and the value of having a health care professional review such information with the family at diagnosis and again at a later date. This research could look at the ongoing need for information by families and whether or not meeting with a nurse for further education periodically might be beneficial for these families. Research could be done into how many families that do not have access to support groups would find them beneficial and would actually attend them i f they were offered. It would also be interesting to try to understand the nature of issues for which families require support. Research could be done, (ie. a survey of families in clinic) as to the value of support groups to them and how they feel they could best benefit from supports and resources. There could also be more research done into the development and testing of evaluation tools to be used with the educational materials that we provide families. It was obvious from the preparation for this study that there is a need for such tools and that there is 102 an ongoing need to review the information we provide families and the usefulness of that information. Evaluat ion Tool Improvements could be made to the evaluation tool. Some of the data on the demographic sheet appears to be unnecessary such as age and numbers of siblings. For the purpose of our study it was interesting to find out how many of our respondents have siblings, but knowing their age and numbers did not change the fact that information for siblings in general needs to be included. If sibling informational needs were to be collected we would need to understand the specifics of the sibling relationships to the child with epilepsy (e.g. D i d the families that requested sibling information do so only i f the siblings were younger? Older? Liv ing in the same home?). In trying to draw the conclusions about whether or not the objectives for the study were met it did not appear to be information that added anything. However, this would be one area that more work could be done i.e. the effect of having a sibling with chronic illness. One line of questioning on the demographic tool that may prove interesting to investigate would be the age of child at diagnosis and the classification of the child's seizures. It would be interesting to look at these two things and see i f they affect the information that families value or the criticisms on the way educational resources are currently delivered. Another area for improvement would be deciding whether there would be value in testing the families' knowledge of epilepsy, different seizure types, first aid for seizures, medication side-effects, etc. Another way to get at whether they obtained knowledge 103 primarily from the package would be to rephrase the questions to ask, " D i d the educational resource package help you in understanding ". If the tool is to be used in the future it wi l l need to be reviewed again. It appeared that while the tool was easy to read and understand, and evaluation data were gathered by the respondents, as noted above, some of the questions could have been more specific. One improvement to the use of the tool would be to use it within six months to one year after receiving the package. In this way the information would be easier for the respondents to remember. In addition, telephone follow-up interviews produced useful data in a time efficient manner. 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Epilepsy Society Educational Resource Package 112 EPILEPSY Education for Families 41 B R I T I S H C O L U M B I A E P I L E P S Y S O C I E T Y C h i l d r e n ' s H o s p i t a l .1 h'.pilepsy program. decelopetl in consultation ivilli Neurology Clinic \urses of B.C.'s Children's Hospital and mode possible hy a grant from Ronald Mcllonald Children's Charities ofCanailu. 113 Appendix C Sample of Stacked Pages in Educational Resource Package 114 APPENDIX C GLOSSARY OF TERMS A B O U T Y O U R C H I L D ' S M E D I C A T I O N S E M O T I O N A L A N D P S Y C H O S O C I A L ISSUES S E I Z U R E S A F E T Y FIRST AID F O R SEIZURES Your child has: Generalized tonic-clonic seizures Absence seizures Complex partial seizures Simple partial seizures Other 1) For generalized tonic-clonic seizures: If possible, try to cushion falls. Remain calm. Remember, you can't stop the seizure but you can keep the child safe. Never force anything into the mouth. Stay with the child and allow him to rest after the seizure. Reassure the child calmly that you w i l l stay and keep him safe. Encourage the child to go back to normal activity as he feels able. Call for an ambulance if: • the seizure lasts longer than five minutes; • the child is not breathing properly; • the child does not regain consciousness soon after the seizure ends. 2) For absence seizures: 115 Appendix D Education Resource Package Content Flowsheet A 116 APPENDIX D Education Package Each package should already include: 1. What Parents need to know "Children and Epilepsy pamphlet 2. Answers to vour quest ions - pamphlet 3. Epilepsy B.C. - envelope 4. Medical Alert - pamphlet 5. Seizure Diary - booklet 6. "Reporting Seizures" - handout Appendix E Educational Resource Package Content Flowsheet 118 Additional Pamphlets to ada?¥o WeFEpilepsy Education Package. Children under 5 Years Old 1. Children and Seizures, Information for babysitters - pamphlet Children 5 to 7 Years Old 1. Mike has Epilepsy - pamphlet 2. You and your seizures - pamphlet 3. Children and Seizures, Information for babysitters - pamphlet Children 8 to 12 Years Old 1. Because you are my friend - pamphlet 2. A child's guide to seizure disorders - pamphlet 3. Children and Seizures, Information for babysitters - pamphlet Teenagers 13 Years and Older 1. Answers to your questions about epilepsy - pamphlet 2. Folic Acid - pamphlet Information on Seizure Types (one of the following, if applicable): A l l About Partial Seizures - pamphlet Juvenile myoclonic epilepsy - pamphlet Petit Mai or Absence Seizures - pamphlet Drug Information - One or More of the Following: Benzodiazepines Diamox Lamotrigine Topiramate Carbamazepine Phenytoin Gabapentin Vigabatrin Valproic Acid Ethosuximide Clobazam Phenobarbital 119 Appendix F Educational Resource Package Prescription 120 Appendix G Evaluat ion Tool 122 Evaluation of Epilepsy Education Package 2001 - Parti This questionnaire can be filled out by one or both parents/caregivers. It is best that the questionnaire be filled out by the person who is most involved in managing the child's epilepsy. If you feel that your child's epilepsy is equally managed by both parents than please f i l l out the questionnaire together. Only the principal investigator w i l l know to whom the letters were sent and the data collected wi l l remain anonymous. Person(s) completing questionnaire: (check one) M o m Dad Both Other (Please indicate relationship to child) Occupation(s) of person(s) identified in question #1. Education level(s) of person(s) identified in question #1. Please circle the answer that most closely relates to your experience overall. 1. Do you recall receiving the Epilepsy Educational Package? (circle one) yes / no 2. Have you read the package? (circle one) yes / no 3. If you answered "yes" to question 2, how many times? 4. H o w would you rate the usefulness of the Epilepsy Educational Package that you received? 2 3 4 Not useful at all Not very useful Kind of useful Very useful 5. What information, i f any, was the most useful? 6. What information, i f any, was the least useful? 123 7. D i d you feel you received enough information? (circle one) yes / no 8. If you answered "no" to 7, what information would you have liked that was not included? 9. Was the information you received relevant? 1 2 10. 11. 12. 13. 14. 15. 16. No, definitely not No, not really Yes, sort of Was the information you received up-to-date? 1 2 3 Yes, definitely No, definitely not No, not really Yes, sort of Yes, definitely Do you know what is meant by the term "epilepsy"? (circle one) yes / no Do you know the difference between partial and generalized seizures? (circle one) yes / no H o w much of the information in the package was new? 1 2 3 4 None Some Most All H o w much of it was a review of previous teaching? 1 2 3 None Some Most All D i d the Epilepsy Education Package help you learn about the safety considerations associated with Epilepsy? 1 No, definitely not No, not really Yes, sort of Yes, definitely Since reviewing the package have you had discussions about seizure safety with your family or others like teachers, babysitters, etc. as a result of reading the educational package? (circle one) yes / no 12-4 3 17. A s a result of the information in the package do you feel you understand the role of medication in seizure treatment? (circle one) yes / no 18. A s a result of the information in the package do you feel you understand the common side effects associated with the seizure medication your child is prescribed? (circle one) yes / no 19. Do you feel that as a result of the educational package you are more able to meet your child's cognitive or physical developmental needs associated with a diagnosis of epilepsy? (circle one) yes / no 20. D i d the Epilepsy Education Package help you and your family identify some of the social and emotional stressors which accompany a diagnosis of epilepsy? 1 2 3 4 No, definitely not No, not really Yes, sort of Yes, definitely 21. Was there information in the package to give your family the ideas about how to address some of these stressors? (circle one) yes / no 22. Do you and your family feel that as a result of the Educational Package you are better able to deal with issues associated with epilepsy now and in the future? 1 2 3 4 No, definitely not No, not really Yes, sort of Yes, definitely 23. Has the Epilepsy Education Package helped you inform others about your child's diagnosis of epilepsy? (circle one) yes / no 24. If you answered "yes" to question 23, how? 25. If you answered "no" to question 23, why? 125 4 26. When do you think would be the best time to receive the package? • • • • . over 6 weeks to 6 months 2-6 weeks after diagnosis At time of diagnosis When diagnosis after diagnosis considered 27. A t which of these times did you receive the package? • • • • over 6 weeks to 6 months 2-6 weeks after diagnosis At time of diagnosis When diagnosis after diagnosis considered 28. D i d the Epilepsy Education Package help you learn about different resources available to you and your family? 1 2 3 4 No, definitely not No, I don't think so Yes, I think so Yes, definitely 29. Have you used any community resources suggested in the educational package? (circle one) yes / no 30. If you answered "yes" to question 29, which ones? 31. If you answered "no" to question 29, why? 32. If you needed more information about Epilepsy, would you know where to go to find it? 1 2 3 4 No, definitely not No, I don't think so Yes, I think so Yes, definitely 33. If a friend's child was diagnosed with Epilepsy would you suggest our Epilepsy Educational Package to him/her? 1 2 3 4 No, definitely not No, I don't think so Yes, I think so Yes, definitely 126 5 34. D i d the information you received help you in your interactions with health care professionals or teachers? (circle one) yes / no 35. If you answered "yes" to question 34, how? 36. D i d the information you received help you clarify other's misconceptions about epilepsy? (circle one) yes / no 37. If you answered "yes" to question 36, how? Please write your answer. The thing I liked best about the Epilepsy Education Package was: If I could change one thing about the Epilepsy Education Package, it would be: 127 6 Evaluation of Epilepsy Education Package 2001 - Part 2 The information gathered in this study wi l l be kept confidential. Each questionnaire w i l l be numbered and information w i l l be gathered and discussed in terms of general results only. Results may be published. A l l original data collection sheets gathered w i l l be discarded in five years. Information re: Study Participants 1. a) Age of Chi ld with Epilepsy b) Number of and ages of other children in the home c) Number of adults in the home 2. Sex of Chi ld with Epilepsy (circle one) female / male 2. Ethnicity Languages spoken : 4. a) Do you have trouble with reading/writing English? (circle one) yes / no b) If you answered "yes" to the question above, what language do you read/write? 5. What is the closest major city to where you live? (ie. Victoria / Prince George) (circle one) rural / urban 6. Where did you receive your teaching package? (circle one) hospital inpatient unit hospital outpatient clinic B . C . Epilepsy 7. H o w long ago did you receive your package? 8. D i d you have a health care professional review the package with you when you received it? (circle one) yes / no 9. a) D i d all the family members read the package? (circle one) yes / no b) If you answered "no" to the question above, who read the package? 10. a) Are there any other members in the family that have epilepsy? (circle one) yes / no lO.b) If you answered "yes" to the question above, what is their relationship to the child with epilepsy? lO.c) Does this person live in the same home? (circle one) yes / no 128 Appendix H Cover Letter 129 T H E U N I V E R S I T Y O F B R I T I S H C O L U M B I A APPENDIX H School of Nursing T201-2211 Wesbrook M a l l Vancouver , B . C . Canada V 6 T 2B5 T e l : (604) 822-7417 Fax: (604) 822-7466 Epilepsy Education Package January 17, 2002 Dear family, Y o u may recall, when your child was diagnosed with Epilepsy at the Neurology Cl in ic at B .C . ' s Children's Hospital, you were given a teaching package by either one of the nurses in the clinic or by your Neurologist. If your son or daughter was diagnosed j n your home community and you did not require a trip to Children's Hospital, you may have received your package through the B . C . Epilepsy Society. The contents of the packages in either case are the same. For my thesis as part of my Master's Degree in Nursing I am evaluating the usefulness of educational package for families. A s part o f that evaluation I am requesting that you fill out the attached questionnaire and return it to the address on the enclosed envelope within 2 weeks of having received it. By doing this evaluation we hope to show reason for continued use of the packages or identify changes that need to be made in order for the packages to be of maximum value to families. The questionnaire should take 20 minutes to complete. Confidentiality and anonymity wi l l be maintained by assigning a number to each returned questionnaire. We request one family member to complete it but you may wish to discuss your answers with other family members. It is assumed that consent for participation has been given by receiving the completed questionnaire. The questionnaire wi l l be used for study purposes only and only accessible to myself and my thesis committee chair, Ms . Lynam. The data wi l l be stored in a locked filing cabinet. If you choose not to participate, please return the incomplete questionnaire in the enclosed envelope and you wil l not receive a reminder letter. 130 Appendix I Reminder Letter 132 T H E U N I V E R S I T Y O F B R I T I S H C O L U M B I A APPENDIX I School of Nursing T201-2211 Wesbrook Mall Vancouver, B.C. Canada V6T 2B5 Tel: (604) 822-7417 Fax: (604) 822-7466 Epilepsy Education Package February 1,2002 Dear family, Y o u may recall, you were recently sent a study questionnaire about the Epilepsy Education Package. For my thesis as part of my Master's Degree in Nursing I am evaluating the usefulness of the educational package for families. Y o u were originally given one of these packages by either one of the nurses in the clinic or by your Neurologist at B .C . ' s Children's Hospital, or through the mail from the B . C . Epilepsy Society. The contents of the packages in either case are the same. If you have completed the questionnaire and sent it back then I thank you. If you have not sent back the questionnaire I ask that you do so within the next two weeks. Your comments and suggestions are very valuable before we embark on a second printing of the package. We hope to show reason for continued use of the packages or identify changes that need to be made in order for the packages to be of maximum value to families. The questionnaire should take 20 minutes to complete. We request that the parent that manages the child's epilepsy is the one to complete the questionnaire, but both parents may fil l out the questionnaire together i f they feel that is best. 133 Appendix J U . B . C . Ethics A p p r o v a l for Study 135 Appendix K C & W Ethics A p p r o v a l for Study 137 Appendix L U . B . C . Ethics A p p r o v a l for Amendment 139 Appendix M C & W Ethics Approva l for Amendment 141 

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