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Parental Experiences Transitioning Their Adolescent With Epilepsy and Cognitive Impairments to Adult Health Care
ARTICLE
Parental Experiences Transitioning Their Adolescent With Epilepsy and Cognitive Impairments to Adult Health Care Rebecca J. Schultz, PhD, RN, CPNP
ABSTRACT Introduction: The objective of this study was to explicate processes that parents of adolescents with epilepsy and cognitive impairments undergo as they help their adolescents transition to adult health care. Method: A qualitative grounded theory methodology was used in this study. Theoretical sampling techniques were used to recruit seven ethnically diverse parents of adolescents 18 years or older with epilepsy and cognitive impairments from the community in a large metropolitan area in the southern United States. Data collection and analysis occurred simultaneously using coding and constant comparison analysis. Results: The substantive theory Journey of Advocacy was developed from interviewing the participants. The theory has five categories: crisis sparks transition, parents in turmoil, parents as advocates, web of information, and captive waiting. Parents emerged as strong advocates in the transition process. Rebecca J. Schultz, Pediatric Nurse Practitioner, Comprehensive Epilepsy Program, Texas Children’s Hospital; Assistant Professor, Department of Pediatrics, Section of Neurology, Baylor College of Medicine; and Adjunct Faculty, Texas Woman’s University College of Nursing, Houston, TX. Conflicts of interest: None to report. Correspondence: Rebecca J. Schultz, PhD, RN, CPNP, 6701 Fannin, Suite 1250, Houston, TX 77030; e-mail: [email protected]. 0891-5245/$36.00 Copyright Q 2013 by the National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved. Published online May 7, 2012. http://dx.doi.org/10.1016/j.pedhc.2012.03.004
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Discussion: Transitioning this group of adolescents to adult health care was an unplanned, complex, multisystem process. This study affirms the need to develop a transition program that acknowledges the unique challenges of transitioning adolescents with cognitive impairments and the interrelationship between these parents and other systems. J Pediatr Health Care. (2013) 27, 359-366.
KEY WORDS Young adult, adolescent, transition to adult care, epilepsy, cognitive impairment
As more adolescents with complex special health care needs (SHCNs) survive into adulthood, the problem of transitioning to the adult health care system is increasingly critical. During the past 20 years there has been increased awareness and research related to the issue of transitioning adolescents with SHCNs. Health care policy statements and position papers that acknowledge the necessity of a planned, family-centered, coordinated, comprehensive transition process of health care for this population of adolescents have been developed (American Academy of Pediatrics [AAP], Committee on Children with Disabilities & Committee on Adolescence, 1996; Blum, et al., 2002). Subsequently, researchers have examined the needs and concerns of transitioning adolescents with a variety of chronic health care conditions (Betz, Redcay, & Tan, 2003; Hauser & Dorn, 1999; Shaw, Southwood, & McDonagh, 2004; Soanes & Timmons, 2004) and the issue of transition readiness (Betz 1998, 2000; Court, 1993; Hauser & Dorn, 1999; Madge & Bryon, 2002; September/October 2013
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Shaw et al., 2004; Soanes & Timmons, 2004). In addition, models of transitioning adolescents with chronic health care conditions have been proposed (Hauser & Dorn, 1999; Shaw, Southwood, & McDonagh, 2006). However, all of these studies specifically excluded individuals with cognitive impairments. Nationwide, in 2005, approximately 1.7 million adolescents 12 to 17 years of age had SHCNs (U.S. Department of Health & Human Services, 2008). Of these adolescents, 3.2% had epilepsy and 10.6% had cognitive impairments (Child and Adolescent Health Measurement Initiative, 2005/2006). Although the sample sizes are small, the few existing studies suggest that the transition needs of adolescents with cognitive impairments and their families differ from their nonintellectually impaired counterparts (Betz et al., 2003; Magill-Evans, Wiart, Darrah, & Kratochvil, 2005; Reiss, Gibson, & Walker, 2005; Ward, Heslop, Mallett, & Simons, 2003). Epilepsy is one of the most common neurological disorders in children and adolescents and can have a dramatic effect on adult medical and social outcomes. No studies have been conducted that exclusively examine transitioning of adolescents with cognitive impairments and epilepsy. The objective of this study was to explicate processes that parents of adolescents with epilepsy and cognitive impairments undergo as they help their adolescent transition from pediatric to adult health care. Because parents are the health-care agents for their adolescent with cognitive impairments and epilepsy, an improved understanding of the processes that these parents experience as they help their adolescent transition from pediatric to adult health care is needed to develop effective, individualized transition plans. Such understanding also could lead to policy development and transition programs to facilitate moving these adolescents to adult health services, thus leading to improved health care. METHODS Study Design The philosophical underpinning used for this qualitative grounded theory study was symbolic interactionism. One of the premises of symbolic interactionism is that meaning is dynamic and evolves based on interactions with others, life experiences, and the current situation (Blumer, 1969). The goal of grounded theory method is development of a theory or explanation of a process that clarifies the subject of investigation; it is particularly useful for understanding a process we know little about (Glaser & Strauss, 1967). The rationale in using this methodology was that an understanding of the process of transitioning this group of adolescents would emerge through knowing the complex experiences of these parents. Setting and Sample Theoretical sampling techniques (Patton, 1990) were used to recruit participants within a 50-mile radius of 360
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a large metropolitan area in the southern United States. Initially, purposive sampling was use to recruit parents from the Transition Workgroup for Families of Children with Disabilities, a parent-to-parent case management program consisting of about 150 individuals who meet every other month to learn and share information about programs and services for adults and adolescents with disabilities who are transitioning to adulthood. A representative from the Transition Workgroup facilitated access to this group by inviting the researcher to the group meetings for the purpose of describing this study. Interested participants provided their phone number to the researcher. They were later contacted by phone; a standardized script describing the proposed research study was read, along with questions to ensure that inclusion criteria were met. If they agreed to participate, a meeting time and place were confirmed. Participants were parents or guardians (mothers, fathers, or both) of adolescents 18 years or older with epilepsy and severe to profound cognitive impairments who had transitioned to an adult provider more than 1 year ago but less than 5 years ago and spoke English. Participants were excluded if the adolescent resided in a residential facility, was in foster care, or had only mild to moderate cognitive impairments. Level of cognitive impairment was based on parental report of standardized testing done by either the school system or their health care provider. As data collection and analysis progressed, other theoretical sampling techniques including snowballing, criterion, and maximum variation were used to ensure inclusion of participants with diverse transition experiences (Patton, 1990). The study was approved by the Texas Woman’s University Institutional Review Board. Before each interview, written informed consent was obtained, including consent for audio tape recording. Each participant received $30 in cash for their participation. Data Collection and Analysis Before the interview, parents completed a questionnaire to elicit demographic characteristics and information regarding the adolescent’s age, level of cognitive functioning, ambulatory status, and average number of seizures per week. Questions directed to the parent regarded age, race, marital status, and level of education. Individual interviews were conducted from June through September 2009 using open-ended, semistructured questions (Box). All interviews were conducted in the participant’s home, audio taped, transcribed verbatim, and reviewed to ensure accuracy. Data collection and analysis occurred concurrently according to the tenets of grounded theory methodology using coding and constant comparison analysis (Glaser & Strauss, 1967; Strauss, 1987). Open coding was done to identify conceptual labels that described participants’ Journal of Pediatric Health Care
BOX. Interview questions 1. 2. 3. 4.
What were your experiences with moving from the children’s clinic to the adult clinic? What helped you move (adolescent’s name) to the adult health care system? What made it more difficult to move (adolescent’s name) to the adult health care system? If you could make a wish list of things that would have made the move for (adolescent’s name) to adult care easier, what would be on that list? 5. Is there anything you would like to add or explain further to help me understand more about the process you went through in moving (adolescent’s name) over to adult care?
experiences. Next, provisional concepts were identified by combining those of the participants with concepts derived from primary research reports. Using the cyclical process of constant comparison, searching for similarities and differences, these concepts were then collapsed into categories. The emerging categories were integrated into a diagram showing the relationship between the categories. Finally, selective coding was performed to identify the core category for integration into a substantive theory. Memoing, a process used in qualitative research, was performed to track data collection and coding of concepts. Scientific rigor was established through trustworthiness (Lincoln & Guba, 1985), which was confirmed through memoing and discussions with qualitative research experts. To add further credibility to this theory, the literature was searched for similar groups for comparison. RESULTS Description of the Sample Theoretical saturation was reached after seven welleducated parents were interviewed. Parents ranged in age from 45 to 65 years, with a mean age of 53 years. Most parents were White (N = 4, 57%), while two (29%) were African American, and one (14%) was Asian. All of the parents had attended college; two had ‘‘some’’ college, one had an Associate degree, one had a Bachelor’s degree, and three had a Master’s degree. Adolescents ranged in age from 20 to 33 years (M = 23), were predominantly male and nonambulatory (N = 6), and had severe (N = 2) or profound (N = 5) cognitive impairments (Table 1). Journey of Advocacy A substantive theory was derived from studying the process that parents undergo as they transition their adolescent with epilepsy and cognitive impairments in one context, a large metropolitan area in the southern United States. A substantive theory versus formal theory is derived from a grounded theory study when a specific social process is studied in relationship to a narrow, empirical area of study (Glaser & Strauss, 1965). Journey of Advocacy is the substantive theory derived from interviewing parents who had ‘‘lived’’ the transition process with their adolescent and systematically analyzing the data through www.jpedhc.org
the cyclical process of constant comparison. This theory was developed through discussions and memoing, using both inductive and deductive reasoning, with experts in conducting grounded theory research. The Journey of Advocacy theory has five temporally sequenced but interactive categories: crisis sparks transition, parents in turmoil, parents as advocates, web of information, and captive waiting (Figure). Each category contains several concepts (Table 2). The theory reflects the process of transitioning for this group of parents and their adolescent. Transitioning from the pediatric to the adult health care system was not planned. Rather, the journey was sparked by a crisis TABLE 1. Demographic characteristics of parents and their adolescent Characteristic
No.
Parent (N = 7) Age (yr) Race White African American Asian Education Some college Associate Bachelors Masters Marital status Married Single Divorced Adolescents (N = 7) Age (yr) Gender Male Female Cognitive impairment Severe Profound Ambulation Ambulatory Non-ambulatory No. seizures Seizure-free (on medication) 2-3/mo 1/mo 1-2/wk 70/wk
Range 45-65 (M = 53)
4 2 1 2 1 1 3 5 1 1 20-33 (M = 23) 6 1 2 5 1 6 1 1 1 3 1
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FIGURE. Journey of Advocacy. This figure is available in color online at www.jpedhc.org.
involving the adolescent’s health or a change in insurance. The underlying factor that sparks the transition at this juncture was age. This crisis induces parental turmoil that in turn stimulates parental advocacy. The relationship between parental turmoil and parental advocacy is intertwined. The parents serve as protectors, ‘‘quarterbacks,’’ and information gatherers in this advocacy process. As a result of the web of information that is fraught with absent, incorrect, or conflicting information, the parents are either held captive waiting for information and/or experience additional turmoil. This turmoil then leads to re-engaging in the advocacy process. The following text contains descriptions of participants. The concepts and categories in quotes are words of the parents; others are interpretations of the composite comments of the parents’ words, tone of voice, and demeanor displayed during the interview. All identifying information was removed to ensure confidentiality while remaining true to the spirit of the information. Crisis sparks transition Transition was sparked by a crisis, which was either an imminent health care need/illness or a change in insur-
TABLE 2. Categories of Journey of Advocacy Category
Concept
Crisis sparks transition
Health issue Insurance Aged out Fear Rejection Uncertainty Protector Information gatherer ‘‘Quarterback’’ Health care provider Support groups Agencies Waiting
Parents in turmoil
Parents as advocates
Web of information
Captive waiting
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ance for five of the adolescents. Two adolescents were transferred to an adult health care provider merely because of their age. The common factor that ignites the crisis is the fact that adolescents ‘‘age out’’ of the system. All seven parents encountered the phenomenon of transitioning at different ages of their adolescent— some at 19 years, and others at 30 years. They underwent no preparation; rather, they were transferred to the adult health care system. As one mother said, ‘‘... nothing was planned or nothing. It was like this is an emergency, so now we’ve got to fix it.’’ Parents in turmoil All of the parents experience turmoil as they faced the prospect of transitioning. They expressed feelings of fear, rejection, and uncertainty. One mother stated, ‘‘Changes are scary. And especially when it has to do with health—living or dying. To me it’s very frightening.’’ As these parents started trying to establish care for their adolescent, the fear of the unknown was evident in their statements. One mother said, ‘‘I’m still upset, thinking—you know—what’s going to happen.’’ Another mother who was having difficulty locating a provider who would accept her daughter as a patient spoke of the bond and trust that she had developed with the therapist, teachers, doctors, and nurses. Parents expressed overt feelings of rejection. One mother whose 33-year-old son was admitted to the hospital experienced rejection after rejection from providers upon discharge from the hospital. The source of payment to the provider, Medicaid or Medicare, was not an issue while he was hospitalized. In contrast, as an outpatient, the source of payment became a significant barrier to finding a primary care provider. Another mother stated, ‘‘You’re kicking me to the curb. You told me I could be here until 22, but because of these two pots of money, Medicaid and Medicare.’’ while another mother said, ‘‘The state didn’t want to pay because that magic word of 21, and you lose all these benefits... it’s like, you took care of them for 21 years so they can die when they’re 21?’’ As evidenced by these statements, transitioning involved not only locating an adult health care provider but also navigating the insurance system and associated rules, which led to feelings of abandonment and rejection, and served as a barrier to transitioning. Parents experienced uncertainty about where they could receive health care or the source of insurance coverage. Disconcertingly, neither the individuals within the organization nor agencies provided these services. One mother was told, ‘‘We don’t know if we can keep you or if we can’t.’’ These uncertainties often were prolonged, stressful, and led to calls to agencies. In one case, it took ten months and the assistance of an attorney to acquire uninterrupted home health nursing services. Journal of Pediatric Health Care
The feelings of fear, rejection, and uncertainty are summed up in this mother’s statement: ‘‘There are a lot of unknowns... there’s too many of them—just to leave them hanging.’’ Parents as advocates Parental turmoil led to advocacy for these parents. As advocates, they assumed the roles of protector, information gatherer, and ‘‘quarterback.’’ The role of protector emerged as parents spoke about the need to be careful about accepting services because of the impact that decisions could have on the care of their adolescent. As exemplified in the next statement, parents had to be wary at every corner of the maze to ensure they were getting the best service for their adolescent: ‘‘You have to be very diligent in the way that you cover yourself in terms of if you really don’t want that service—you need to know what the implications are for not accepting that service or finding out which one is better for you later on down the line.’’ Parents took charge of locating and sustaining essential health care services. One mother spoke of her ‘‘fight’’ to keep the necessary home health nursing services for her son, while another mother stated, ‘‘That’s basically what I’ve been doing, is making sure that I had the right people to do what they needed to do for [him] for whatever reason.’’ All of the parents assumed the role of information gatherer. They not only needed to identify resources, but they also needed to understand the intricate differences in the eligibility requirements and delivery of services for various agencies. As one mother said, ‘‘There’s no information out there. There needs to be a Web site set up... some sort of database that people can go to. It needs to be clear... the different agencies and what they do.’’ All of these adolescents’ parents were in contact with the school system; however, despite federal regulations requiring transition planning, none of these parents believed the school system was knowledgeable. As one mother said, ‘‘We didn’t get good information about what to do... they didn’t know what to do. So that’s when I really started doing a lot on my own.’’ Lastly, all parents assume the role of ‘‘quarterback’’ in the Journey of Advocacy. No agency or individual assumed a coordinating role. As one mother stated, ‘‘I need a quarterback. No offense, neurologist, and surgeons, and all you people, but I need a leader of this team. Somebody who’s going to understand and know everybody. Otherwise, I’m going to have to quarterback it.’’ Others described situations in which they had ‘‘to go out there and fight for yourself or you have to figure out things for yourself’’ because ‘‘If you don’t know how to do it—maneuver through the system—you don’t get the service.’’ Parents as advocates is exemplified in the following statement: ‘‘They don’t tell me, well, these are the things that are available. They asked me, ÔWhat www.jpedhc.org
are you going to do with [your son] when he graduates?Õ They all sit around waiting on me to tell them what I’m going to do. Well, I came up with my own plan.’’ Web of information As they served as advocates and gathered information, parents expressed difficulty not only locating information but also understanding the ins and outs of the information. One mother stated, ‘‘There’s this huge web of trying to figure how it all works.’’ Parents identify three broad sources of information: health care providers, support groups, and insurance/funding agencies. Three of the seven participants indicated that physicians were helpful in the transition process from ‘‘a physician’s standpoint—not from a red tape standpoint.’’ Social workers were helpful in providing information about potential community resources, but overall, support groups were the most helpful sources of information. One mother said, ‘‘This is where you get all of your information... you get more information from parent groups than any other place.’’ Along with support groups, ‘‘just networking with parents’’ is a valuable resource. In contrast, agencies are a source of misinformation or conflicting information that led to fragmented services and contributed to parental turmoil. As illustrated in the following statement, the individuals within the agencies who were there to ‘‘assist’’ these parents lacked information. ‘‘They want to switch him over to Medicare. And this is new for them, too. they don’t have a clue about what’s going on.’’ Additionally, discontinuity within the health care systems was evident: ‘‘The agencies were like the right hand didn’t know what the left hand did... it’s just a lack of information... there’s nothing that ties all the strings together.’’ This fragmentation of care and misinformation promoted the advocacy role in these parents. As one mother stated, ‘‘.they don’t know what they’re sending... everybody’s getting stuff messed up. We’re talking transition—when you’re changing a whole new system, but [my son’s] life stays the same.’’ Captive waiting Because of the discontinuity between agencies, the parents are confined to a state of ‘‘captive waiting’’ for answers before they can move forward. This captivity generates feelings of uncertainty and fear of loss of services. Waiting on lists to acquire services was not new to many of these families. Nonetheless, the complexity of the health insurance system and the resultant parental turmoil is exemplified in this mother’s statements: We’re MDCP—medical dependent children’s program. We’ve been on the waiting list for class or access— HCA—since 2003. If we don’t get on another Medicaid waiver program by the time [my son] turns 21 in December [6 months], we are going to lose our traditional Medicaid—Medicare Medicaid—and we’re going to have to roll over into an HMO. If they put us
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on Class—HCA, we will still be able to have traditional Medicaid. But if you stay on HCA, when they turn 21, they have to go to what you call CBA. And if you go to CBA, you have to roll over to an HMO.
Often, parents did not have the choice of coverage; they were at the mercy of the ‘‘system’’ to determine when and where they are going to receive services. In summary, transitioning from the pediatric to adult health care system is not planned, but rather is sparked by a crisis, such as illness or ineligible insurance coverage related to age, which evokes parental turmoil that leads to parental advocacy. As advocates, parents assume the roles of protector, ‘‘quarterback,’’ and information gatherer. This journey is replete with a web of information that is inconsistent, incorrect, or absent, thereby reigniting parental turmoil. One mother deftly summed up this journey as follows: ‘‘Transition to me equals sheer fear. It’s like jumping off a cliff. And if you’re really well prepared—you might have a parachute or a trampoline along the way for a short respite period there. You feel like you’re on a treadmill with it.’’ DISCUSSION This study begins to explicate the complex, stressful process that parents of adolescents with epilepsy and cognitive impairments traverse as they transition from pediatric to adult health care. Barriers to transitioning as well as enabling factors were elucidated; these findings provide evidence to support the necessity of developing health care transition programs and generate questions for future research. Parents in this study described some experiences that are similar to those reported in the literature. None of the seven parents had received any transition planning with regard to health care. Furthermore, the underlying factor that initiated the Several factors that transition in six of the enabled transition seven cases was the fact that they had aged were revealed in out of treatment, either this study: because of the hospiestablishing an tal’s or provider’s limit for services or because interpersonal of changes in funding parent-provider for health care, that is, relationship, Medicaid versus Medicare. Other investigaparental advocacy, tors have reported and networking. lack of preparation for transitioning (Scal & Ireland, 2005; Ward et al., 2003), aging out of the system, and insurance/funding coverage as barriers to transitioning (Reiss et al., 2005). Similar to the findings of others (Hauser & Dorn, 1999; Reiss et al., 2005), all of the parents expressed fear of leaving a system or providers who were familiar with them and with whom they had developed a collaborative relationship. In 364
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contrast, the intense feelings of rejection and uncertainty associated with transitioning that parents expressed in this study have not been reported. Several factors that enabled transition were revealed in this study: establishing an interpersonal parentprovider relationship, parental advocacy, and networking. Similar to other studies (Brumfield & Lansbury, 2004; Reiss et al., 2005; Scal & Ireland, 2005; Shaw et al., 2006), four of the seven parents in this study expressed satisfaction with their transition once they established an interpersonal dialogue with their new adult health care provider. Parents emerged as advocates; they possessed a repertoire of skills that were crucial to securing care for their adolescent and traversing the maze of information from insurance/funding agencies, health care providers, and parent support groups. All of the parents indicated that networking with other parents and parent support groups was the most reliable and helpful way to locate community and funding resources. The parents in this study knew the needs of their adolescents and were tenacious in acquiring, directing, and coordinating their needs as they transitioned. These findings have not been reported in the transitioning literature. However, the parental roles of being an advocate, a guardian, and an expert were reported by Lutenbacher, Karp, Ajero, Howe, and Williams (2005) in their study of families of children with SHCNs. Similar to the findings of this study, parents reported lack of readily accessible insurance information or knowledge of how to negotiate the insurance system (Lutenbacher et al., 2005). These findings validate the importance of establishing trusting, high-quality parent-provider relationships and highlight the importance of networking and fostering advocacy skills in parents of adolescents with SHCNs. The findings of this study suggest that the complexity of the transition process was increased because of the adolescents’ severe to profound cognitive impairments and total dependence on others, rather than the effects of epilepsy. Five of the adolescents had profound cognitive impairments and two had severe cognitive impairments, and six were non-ambulatory but had relatively well-controlled seizures. The parents never mentioned ‘‘epilepsy’’ as affecting the transition process. Therefore this finding may not be representative of those who have poorly controlled epilepsy. Nonetheless, these results add to the body of literature attesting to the difficulty in transitioning adolescents with cognitive impairments (Betz et al., 2003; Magill-Evans et al., 2005; Reiss et al., 2005; Ward et al., 2003). Furthermore, the parental statements describing the difficulty in accessing adult providers who accepted Medicaid affirm the 2001 Surgeon General’s report entitled Closing the Gap, which states that individuals with cognitive impairments have more difficulty accessing and paying for health care (Surgeon General’s Conference on Health Disparities and Mental Retardation, 2002). Journal of Pediatric Health Care
Limitations of this study are that all parents lived in a large urban area and were highly educated and recruited from a parent support group, and the adolescents had severe to profound cognitive impairments and relatively well-controlled epilepsy. These parents may differ in their ability to advocate for their adolescent and therefore have different experiences in the transition process. In addition, the credibility of this study could be strengthened by returning to the participants for a follow-up interview to review the identified categories and concepts. Nonetheless, the findings of this study highlight the advocacy role of parents, the importance of family support groups, and the barriers to transitioning cognitively impaired adolescents with epilepsy. CONCLUSIONS The Journey of Advocacy demonstrates the interaction between the parents of these adolescents and individuals or systems in their environment who directly affect the transition process. Transitioning this group of adolescents was multidimensional; it not only involved locating an adult health care provider, but also other systems, including the school and insurance/government funding programs. Multiple sectors of the community interacted during the process of transitioning; unfortunately, information and services were fragmented, which led to parental turmoil, which in turn promoted parental advocacy. Clearly, national policy guidelines endorsing a planned, family-centered, coordinated, comprehensive transition process (AAP Committee on Children with Disabilities & Committee on Adolescence, 1996; Blum et al., 2002) have This study affirms not been accomplished the need to develop with this group of adolescents with severe to a transition profound cognitive improgram for this pairments and epigroup of lepsy. This study affirms the need to deadolescents that velop a transition proacknowledges the gram for this group of interrelationship adolescents that acknowledges the interbetween these relationship between parents and their these parents and their environment during environment during this process. Nurses this process. can play a pivotal role in the development and implementation of such a program. Providing holistic care that incorporates the family, their cultural beliefs, and their psychosocial needs is core to nursing. Developing programs that capitalize on the networking and advocacy skills of parents and providing them access to transparent, accurate funding and community www.jpedhc.org
resources would not only enhance their ability to assist in developing a family-centered, individualized package of resources for their adolescent but also would diminish the cycle of turmoil experienced in this process. Furthermore, easy access to community support services and funding resources would decrease dependence on agencies to assist with these services, thereby decreasing the burden on an already stressed system. Further research should be conducted to further explore and understand the transition experiences of parents of adolescents with uncontrolled epilepsy and mild to moderate cognitive impairments. These findings would allow for generalization to a broader group and lead to the development of a more comprehensive transition program. Further research on transition models is needed. Developing and measuring the outcome of a theoretically based transition program designed specifically for adolescents with epilepsy and cognitive impairments would add to the body of literature and possibly lead to improved health care not only for these parents and their adolescents, but also for other adolescents with SHCNs. As evidenced in this study, transitioning involved more that finding a health care provider; it entailed interacting with multiple sectors in the environment. An ecological framework such as Bronfenbrenner’s ecological theory (Bronfenbrenner, 1999), which includes the parent and adolescent, school, health care systems, cultural beliefs, and the economic/political system, could provide the structure for future research that incorporates all these systems. I thank my dissertation committee, Brenda Binder, PhD, RN, Lene Symes, PhD, RN, and Judith McFarlane, PhD, RN, for their expertise, time, and guidance; Elaine Hime for her assistance in recruiting families; and the parents who graciously allowed a stranger into their home and shared their personal stories of transitioning.
REFERENCES American Academy of Pediatrics, Committee on Children with Disabilities and Committee on Adolescence. (1996). Transition of care provided for adolescents with special health care needs. Pediatrics, 98(6), 1203-1206. Betz, C. L. (1998). Facilitating the transition of adolescents with chronic conditions from pediatric to adult health care and community settings. Issues in Comprehensive Pediatric Nursing, 21(2), 97-115. Betz, C. L. (2000). California Healthy and Ready to Work Transition health care guide: Developmental guidelines for teaching health care. Issues in Comprehensive Pediatric Nursing, 23(3), 203-244. Betz, C. L., Redcay, G., & Tan, S. (2003). Self-reported health care self-care needs of transition-age youth: A pilot study. Issues in Comprehensive Pediatric Nursing, 26, 159-181. Blum, R. W., Hirsch, D., Kastner, T. A., Quint, R. D., Sandler, A. D., & Anderson, S. M. (2002). A consensus statement on health care transitions for young adults with special health care needs. Pediatrics, 110(6), 1304-1306. Blumer, H. (1969). Symbolic interactionism. Englewood Cliffs, NJ: Prentice-Hall.
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Bronfenbrenner, U. (1999). Environments in developmental perspective: Theoretical and operational models. In S. L. Friedman & T. D. Wachs (Eds.), Measuring environment across the life span (pp. 3-28). Washington, DC: American Psychological Association. Brumfield, K., & Lansbury, G. (2004). Experiences of adolescents with cystic fibrosis during their transition from paediatric to adult health care: A qualitative study of young Australian adults. Disability and Rehabilitation, 26(4), 223-234. Child and Adolescent Health Measurement Initiative. (2005/2006). National survey of children with special health care needs. Data Resource Center for Child & Adolescent Health, 2005/ 2006 [Data file]. Retrieved from Data Resource Center website: http://www.cshcndata.org Court, J. M. (1993). Issues of transition to adult care. Journal of Pediatric Child Health, 29(Suppl 1), S53-S55. Glaser, B. G., & Strauss, A. L. (1965). Discovery of substantive theory: A basic strategy underlying qualitative research. American Behavioral Scientist, 8(6), 5-12. Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory. Chicago, IL: Aldine Publishing Company. Hauser, E. S., & Dorn, L. (1999). Transitioning adolescents with sickle cell disease to adult-centered care. Pediatric Nursing, 25(5), 479-488. Lincoln, Y. S., & Guba, E. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage. Lutenbacher, M., Karp, S., Ajero, G., Howe, D., & Williams, M. (2005). Crossing community sectors: Challenges faced by families of children with special health care needs. Journal of Family Nursing, 11(2), 162-182. Madge, S., & Bryon, M. (2002). A model for transition from pediatric to adult care in cystic fibrosis. Journal of Pediatric Nursing, 17(4), 283-288. Magill-Evans, J., Wiart, L., Darrah, J., & Kratochvil, M. (2005). Beginning the transition to adulthood: The experiences of six families with youths with cerebral palsy. Physical & Occupational Therapy in Pediatrics, 25(3), 19-36.
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Patton, M. Q. (1990). Qualitative evaluation and research methods. Newbury Park, CA: Sage. Reiss, J. G., Gibson, R. W., & Walker, L. R. (2005). Health care transition: Youth, family, and provider perspectives. Pediatrics, 115(1), 112-120. Scal, P., & Ireland, M. (2005). Addressing transition to adult health care for adolescents with special health care needs. Pediatrics, 115(6), 1607-1612. Shaw, K. L., Southwood, T. R., McDonagh, J. E. & (on behalf of the British Paediatric Rheumatology Group). (2004). User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology, 43, 770-778. Shaw, K. L., Southwood, T. R., & McDonagh, J. E. (2006). Young people’s satisfaction of transitional care in adolescent rheumatology in the UK. Child Care, Health and Development, 33(4), 368-379. Soanes, C., & Timmons, S. (2004). Improving transition: A qualitative study examining the attitudes of young people with chronic illness transferring to adult care. Journal of Child Health Care, 8(2), 102-112. Strauss, A. L. (1987). Qualitative analysis for social scientists. New York: Cambridge University Press. Surgeon General’s Conference on Health Disparities and Mental Retardation. (2002). Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation. Retrieved from http://www.nichd.nih.gov/publications/pubs/ closingthegap/index.cfm U.S. Department of Health & Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. (2008). The National Survey of Children with Special Health Care Needs Chartbook 2005-2006. Rockville, MD: U.S. Department of Health & Human Services. Ward, L., Heslop, P., Mallett, R., & Simons, K. (2003). Transition: The experiences of young people with learning disabilities and their families in England. Tizard Learning Disability Review, 8(4), 19-28.
Journal of Pediatric Health Care
Parental Experiences Transitioning Their Adolescent With Epilepsy and Cognitive Impairments to Adult Health Care Rebecca J. Schultz, PhD, RN, CPNP
ABSTRACT Introduction: The objective of this study was to explicate processes that parents of adolescents with epilepsy and cognitive impairments undergo as they help their adolescents transition to adult health care. Method: A qualitative grounded theory methodology was used in this study. Theoretical sampling techniques were used to recruit seven ethnically diverse parents of adolescents 18 years or older with epilepsy and cognitive impairments from the community in a large metropolitan area in the southern United States. Data collection and analysis occurred simultaneously using coding and constant comparison analysis. Results: The substantive theory Journey of Advocacy was developed from interviewing the participants. The theory has five categories: crisis sparks transition, parents in turmoil, parents as advocates, web of information, and captive waiting. Parents emerged as strong advocates in the transition process. Rebecca J. Schultz, Pediatric Nurse Practitioner, Comprehensive Epilepsy Program, Texas Children’s Hospital; Assistant Professor, Department of Pediatrics, Section of Neurology, Baylor College of Medicine; and Adjunct Faculty, Texas Woman’s University College of Nursing, Houston, TX. Conflicts of interest: None to report. Correspondence: Rebecca J. Schultz, PhD, RN, CPNP, 6701 Fannin, Suite 1250, Houston, TX 77030; e-mail: [email protected]. 0891-5245/$36.00 Copyright Q 2013 by the National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved. Published online May 7, 2012. http://dx.doi.org/10.1016/j.pedhc.2012.03.004
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Discussion: Transitioning this group of adolescents to adult health care was an unplanned, complex, multisystem process. This study affirms the need to develop a transition program that acknowledges the unique challenges of transitioning adolescents with cognitive impairments and the interrelationship between these parents and other systems. J Pediatr Health Care. (2013) 27, 359-366.
KEY WORDS Young adult, adolescent, transition to adult care, epilepsy, cognitive impairment
As more adolescents with complex special health care needs (SHCNs) survive into adulthood, the problem of transitioning to the adult health care system is increasingly critical. During the past 20 years there has been increased awareness and research related to the issue of transitioning adolescents with SHCNs. Health care policy statements and position papers that acknowledge the necessity of a planned, family-centered, coordinated, comprehensive transition process of health care for this population of adolescents have been developed (American Academy of Pediatrics [AAP], Committee on Children with Disabilities & Committee on Adolescence, 1996; Blum, et al., 2002). Subsequently, researchers have examined the needs and concerns of transitioning adolescents with a variety of chronic health care conditions (Betz, Redcay, & Tan, 2003; Hauser & Dorn, 1999; Shaw, Southwood, & McDonagh, 2004; Soanes & Timmons, 2004) and the issue of transition readiness (Betz 1998, 2000; Court, 1993; Hauser & Dorn, 1999; Madge & Bryon, 2002; September/October 2013
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Shaw et al., 2004; Soanes & Timmons, 2004). In addition, models of transitioning adolescents with chronic health care conditions have been proposed (Hauser & Dorn, 1999; Shaw, Southwood, & McDonagh, 2006). However, all of these studies specifically excluded individuals with cognitive impairments. Nationwide, in 2005, approximately 1.7 million adolescents 12 to 17 years of age had SHCNs (U.S. Department of Health & Human Services, 2008). Of these adolescents, 3.2% had epilepsy and 10.6% had cognitive impairments (Child and Adolescent Health Measurement Initiative, 2005/2006). Although the sample sizes are small, the few existing studies suggest that the transition needs of adolescents with cognitive impairments and their families differ from their nonintellectually impaired counterparts (Betz et al., 2003; Magill-Evans, Wiart, Darrah, & Kratochvil, 2005; Reiss, Gibson, & Walker, 2005; Ward, Heslop, Mallett, & Simons, 2003). Epilepsy is one of the most common neurological disorders in children and adolescents and can have a dramatic effect on adult medical and social outcomes. No studies have been conducted that exclusively examine transitioning of adolescents with cognitive impairments and epilepsy. The objective of this study was to explicate processes that parents of adolescents with epilepsy and cognitive impairments undergo as they help their adolescent transition from pediatric to adult health care. Because parents are the health-care agents for their adolescent with cognitive impairments and epilepsy, an improved understanding of the processes that these parents experience as they help their adolescent transition from pediatric to adult health care is needed to develop effective, individualized transition plans. Such understanding also could lead to policy development and transition programs to facilitate moving these adolescents to adult health services, thus leading to improved health care. METHODS Study Design The philosophical underpinning used for this qualitative grounded theory study was symbolic interactionism. One of the premises of symbolic interactionism is that meaning is dynamic and evolves based on interactions with others, life experiences, and the current situation (Blumer, 1969). The goal of grounded theory method is development of a theory or explanation of a process that clarifies the subject of investigation; it is particularly useful for understanding a process we know little about (Glaser & Strauss, 1967). The rationale in using this methodology was that an understanding of the process of transitioning this group of adolescents would emerge through knowing the complex experiences of these parents. Setting and Sample Theoretical sampling techniques (Patton, 1990) were used to recruit participants within a 50-mile radius of 360
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a large metropolitan area in the southern United States. Initially, purposive sampling was use to recruit parents from the Transition Workgroup for Families of Children with Disabilities, a parent-to-parent case management program consisting of about 150 individuals who meet every other month to learn and share information about programs and services for adults and adolescents with disabilities who are transitioning to adulthood. A representative from the Transition Workgroup facilitated access to this group by inviting the researcher to the group meetings for the purpose of describing this study. Interested participants provided their phone number to the researcher. They were later contacted by phone; a standardized script describing the proposed research study was read, along with questions to ensure that inclusion criteria were met. If they agreed to participate, a meeting time and place were confirmed. Participants were parents or guardians (mothers, fathers, or both) of adolescents 18 years or older with epilepsy and severe to profound cognitive impairments who had transitioned to an adult provider more than 1 year ago but less than 5 years ago and spoke English. Participants were excluded if the adolescent resided in a residential facility, was in foster care, or had only mild to moderate cognitive impairments. Level of cognitive impairment was based on parental report of standardized testing done by either the school system or their health care provider. As data collection and analysis progressed, other theoretical sampling techniques including snowballing, criterion, and maximum variation were used to ensure inclusion of participants with diverse transition experiences (Patton, 1990). The study was approved by the Texas Woman’s University Institutional Review Board. Before each interview, written informed consent was obtained, including consent for audio tape recording. Each participant received $30 in cash for their participation. Data Collection and Analysis Before the interview, parents completed a questionnaire to elicit demographic characteristics and information regarding the adolescent’s age, level of cognitive functioning, ambulatory status, and average number of seizures per week. Questions directed to the parent regarded age, race, marital status, and level of education. Individual interviews were conducted from June through September 2009 using open-ended, semistructured questions (Box). All interviews were conducted in the participant’s home, audio taped, transcribed verbatim, and reviewed to ensure accuracy. Data collection and analysis occurred concurrently according to the tenets of grounded theory methodology using coding and constant comparison analysis (Glaser & Strauss, 1967; Strauss, 1987). Open coding was done to identify conceptual labels that described participants’ Journal of Pediatric Health Care
BOX. Interview questions 1. 2. 3. 4.
What were your experiences with moving from the children’s clinic to the adult clinic? What helped you move (adolescent’s name) to the adult health care system? What made it more difficult to move (adolescent’s name) to the adult health care system? If you could make a wish list of things that would have made the move for (adolescent’s name) to adult care easier, what would be on that list? 5. Is there anything you would like to add or explain further to help me understand more about the process you went through in moving (adolescent’s name) over to adult care?
experiences. Next, provisional concepts were identified by combining those of the participants with concepts derived from primary research reports. Using the cyclical process of constant comparison, searching for similarities and differences, these concepts were then collapsed into categories. The emerging categories were integrated into a diagram showing the relationship between the categories. Finally, selective coding was performed to identify the core category for integration into a substantive theory. Memoing, a process used in qualitative research, was performed to track data collection and coding of concepts. Scientific rigor was established through trustworthiness (Lincoln & Guba, 1985), which was confirmed through memoing and discussions with qualitative research experts. To add further credibility to this theory, the literature was searched for similar groups for comparison. RESULTS Description of the Sample Theoretical saturation was reached after seven welleducated parents were interviewed. Parents ranged in age from 45 to 65 years, with a mean age of 53 years. Most parents were White (N = 4, 57%), while two (29%) were African American, and one (14%) was Asian. All of the parents had attended college; two had ‘‘some’’ college, one had an Associate degree, one had a Bachelor’s degree, and three had a Master’s degree. Adolescents ranged in age from 20 to 33 years (M = 23), were predominantly male and nonambulatory (N = 6), and had severe (N = 2) or profound (N = 5) cognitive impairments (Table 1). Journey of Advocacy A substantive theory was derived from studying the process that parents undergo as they transition their adolescent with epilepsy and cognitive impairments in one context, a large metropolitan area in the southern United States. A substantive theory versus formal theory is derived from a grounded theory study when a specific social process is studied in relationship to a narrow, empirical area of study (Glaser & Strauss, 1965). Journey of Advocacy is the substantive theory derived from interviewing parents who had ‘‘lived’’ the transition process with their adolescent and systematically analyzing the data through www.jpedhc.org
the cyclical process of constant comparison. This theory was developed through discussions and memoing, using both inductive and deductive reasoning, with experts in conducting grounded theory research. The Journey of Advocacy theory has five temporally sequenced but interactive categories: crisis sparks transition, parents in turmoil, parents as advocates, web of information, and captive waiting (Figure). Each category contains several concepts (Table 2). The theory reflects the process of transitioning for this group of parents and their adolescent. Transitioning from the pediatric to the adult health care system was not planned. Rather, the journey was sparked by a crisis TABLE 1. Demographic characteristics of parents and their adolescent Characteristic
No.
Parent (N = 7) Age (yr) Race White African American Asian Education Some college Associate Bachelors Masters Marital status Married Single Divorced Adolescents (N = 7) Age (yr) Gender Male Female Cognitive impairment Severe Profound Ambulation Ambulatory Non-ambulatory No. seizures Seizure-free (on medication) 2-3/mo 1/mo 1-2/wk 70/wk
Range 45-65 (M = 53)
4 2 1 2 1 1 3 5 1 1 20-33 (M = 23) 6 1 2 5 1 6 1 1 1 3 1
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FIGURE. Journey of Advocacy. This figure is available in color online at www.jpedhc.org.
involving the adolescent’s health or a change in insurance. The underlying factor that sparks the transition at this juncture was age. This crisis induces parental turmoil that in turn stimulates parental advocacy. The relationship between parental turmoil and parental advocacy is intertwined. The parents serve as protectors, ‘‘quarterbacks,’’ and information gatherers in this advocacy process. As a result of the web of information that is fraught with absent, incorrect, or conflicting information, the parents are either held captive waiting for information and/or experience additional turmoil. This turmoil then leads to re-engaging in the advocacy process. The following text contains descriptions of participants. The concepts and categories in quotes are words of the parents; others are interpretations of the composite comments of the parents’ words, tone of voice, and demeanor displayed during the interview. All identifying information was removed to ensure confidentiality while remaining true to the spirit of the information. Crisis sparks transition Transition was sparked by a crisis, which was either an imminent health care need/illness or a change in insur-
TABLE 2. Categories of Journey of Advocacy Category
Concept
Crisis sparks transition
Health issue Insurance Aged out Fear Rejection Uncertainty Protector Information gatherer ‘‘Quarterback’’ Health care provider Support groups Agencies Waiting
Parents in turmoil
Parents as advocates
Web of information
Captive waiting
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ance for five of the adolescents. Two adolescents were transferred to an adult health care provider merely because of their age. The common factor that ignites the crisis is the fact that adolescents ‘‘age out’’ of the system. All seven parents encountered the phenomenon of transitioning at different ages of their adolescent— some at 19 years, and others at 30 years. They underwent no preparation; rather, they were transferred to the adult health care system. As one mother said, ‘‘... nothing was planned or nothing. It was like this is an emergency, so now we’ve got to fix it.’’ Parents in turmoil All of the parents experience turmoil as they faced the prospect of transitioning. They expressed feelings of fear, rejection, and uncertainty. One mother stated, ‘‘Changes are scary. And especially when it has to do with health—living or dying. To me it’s very frightening.’’ As these parents started trying to establish care for their adolescent, the fear of the unknown was evident in their statements. One mother said, ‘‘I’m still upset, thinking—you know—what’s going to happen.’’ Another mother who was having difficulty locating a provider who would accept her daughter as a patient spoke of the bond and trust that she had developed with the therapist, teachers, doctors, and nurses. Parents expressed overt feelings of rejection. One mother whose 33-year-old son was admitted to the hospital experienced rejection after rejection from providers upon discharge from the hospital. The source of payment to the provider, Medicaid or Medicare, was not an issue while he was hospitalized. In contrast, as an outpatient, the source of payment became a significant barrier to finding a primary care provider. Another mother stated, ‘‘You’re kicking me to the curb. You told me I could be here until 22, but because of these two pots of money, Medicaid and Medicare.’’ while another mother said, ‘‘The state didn’t want to pay because that magic word of 21, and you lose all these benefits... it’s like, you took care of them for 21 years so they can die when they’re 21?’’ As evidenced by these statements, transitioning involved not only locating an adult health care provider but also navigating the insurance system and associated rules, which led to feelings of abandonment and rejection, and served as a barrier to transitioning. Parents experienced uncertainty about where they could receive health care or the source of insurance coverage. Disconcertingly, neither the individuals within the organization nor agencies provided these services. One mother was told, ‘‘We don’t know if we can keep you or if we can’t.’’ These uncertainties often were prolonged, stressful, and led to calls to agencies. In one case, it took ten months and the assistance of an attorney to acquire uninterrupted home health nursing services. Journal of Pediatric Health Care
The feelings of fear, rejection, and uncertainty are summed up in this mother’s statement: ‘‘There are a lot of unknowns... there’s too many of them—just to leave them hanging.’’ Parents as advocates Parental turmoil led to advocacy for these parents. As advocates, they assumed the roles of protector, information gatherer, and ‘‘quarterback.’’ The role of protector emerged as parents spoke about the need to be careful about accepting services because of the impact that decisions could have on the care of their adolescent. As exemplified in the next statement, parents had to be wary at every corner of the maze to ensure they were getting the best service for their adolescent: ‘‘You have to be very diligent in the way that you cover yourself in terms of if you really don’t want that service—you need to know what the implications are for not accepting that service or finding out which one is better for you later on down the line.’’ Parents took charge of locating and sustaining essential health care services. One mother spoke of her ‘‘fight’’ to keep the necessary home health nursing services for her son, while another mother stated, ‘‘That’s basically what I’ve been doing, is making sure that I had the right people to do what they needed to do for [him] for whatever reason.’’ All of the parents assumed the role of information gatherer. They not only needed to identify resources, but they also needed to understand the intricate differences in the eligibility requirements and delivery of services for various agencies. As one mother said, ‘‘There’s no information out there. There needs to be a Web site set up... some sort of database that people can go to. It needs to be clear... the different agencies and what they do.’’ All of these adolescents’ parents were in contact with the school system; however, despite federal regulations requiring transition planning, none of these parents believed the school system was knowledgeable. As one mother said, ‘‘We didn’t get good information about what to do... they didn’t know what to do. So that’s when I really started doing a lot on my own.’’ Lastly, all parents assume the role of ‘‘quarterback’’ in the Journey of Advocacy. No agency or individual assumed a coordinating role. As one mother stated, ‘‘I need a quarterback. No offense, neurologist, and surgeons, and all you people, but I need a leader of this team. Somebody who’s going to understand and know everybody. Otherwise, I’m going to have to quarterback it.’’ Others described situations in which they had ‘‘to go out there and fight for yourself or you have to figure out things for yourself’’ because ‘‘If you don’t know how to do it—maneuver through the system—you don’t get the service.’’ Parents as advocates is exemplified in the following statement: ‘‘They don’t tell me, well, these are the things that are available. They asked me, ÔWhat www.jpedhc.org
are you going to do with [your son] when he graduates?Õ They all sit around waiting on me to tell them what I’m going to do. Well, I came up with my own plan.’’ Web of information As they served as advocates and gathered information, parents expressed difficulty not only locating information but also understanding the ins and outs of the information. One mother stated, ‘‘There’s this huge web of trying to figure how it all works.’’ Parents identify three broad sources of information: health care providers, support groups, and insurance/funding agencies. Three of the seven participants indicated that physicians were helpful in the transition process from ‘‘a physician’s standpoint—not from a red tape standpoint.’’ Social workers were helpful in providing information about potential community resources, but overall, support groups were the most helpful sources of information. One mother said, ‘‘This is where you get all of your information... you get more information from parent groups than any other place.’’ Along with support groups, ‘‘just networking with parents’’ is a valuable resource. In contrast, agencies are a source of misinformation or conflicting information that led to fragmented services and contributed to parental turmoil. As illustrated in the following statement, the individuals within the agencies who were there to ‘‘assist’’ these parents lacked information. ‘‘They want to switch him over to Medicare. And this is new for them, too. they don’t have a clue about what’s going on.’’ Additionally, discontinuity within the health care systems was evident: ‘‘The agencies were like the right hand didn’t know what the left hand did... it’s just a lack of information... there’s nothing that ties all the strings together.’’ This fragmentation of care and misinformation promoted the advocacy role in these parents. As one mother stated, ‘‘.they don’t know what they’re sending... everybody’s getting stuff messed up. We’re talking transition—when you’re changing a whole new system, but [my son’s] life stays the same.’’ Captive waiting Because of the discontinuity between agencies, the parents are confined to a state of ‘‘captive waiting’’ for answers before they can move forward. This captivity generates feelings of uncertainty and fear of loss of services. Waiting on lists to acquire services was not new to many of these families. Nonetheless, the complexity of the health insurance system and the resultant parental turmoil is exemplified in this mother’s statements: We’re MDCP—medical dependent children’s program. We’ve been on the waiting list for class or access— HCA—since 2003. If we don’t get on another Medicaid waiver program by the time [my son] turns 21 in December [6 months], we are going to lose our traditional Medicaid—Medicare Medicaid—and we’re going to have to roll over into an HMO. If they put us
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on Class—HCA, we will still be able to have traditional Medicaid. But if you stay on HCA, when they turn 21, they have to go to what you call CBA. And if you go to CBA, you have to roll over to an HMO.
Often, parents did not have the choice of coverage; they were at the mercy of the ‘‘system’’ to determine when and where they are going to receive services. In summary, transitioning from the pediatric to adult health care system is not planned, but rather is sparked by a crisis, such as illness or ineligible insurance coverage related to age, which evokes parental turmoil that leads to parental advocacy. As advocates, parents assume the roles of protector, ‘‘quarterback,’’ and information gatherer. This journey is replete with a web of information that is inconsistent, incorrect, or absent, thereby reigniting parental turmoil. One mother deftly summed up this journey as follows: ‘‘Transition to me equals sheer fear. It’s like jumping off a cliff. And if you’re really well prepared—you might have a parachute or a trampoline along the way for a short respite period there. You feel like you’re on a treadmill with it.’’ DISCUSSION This study begins to explicate the complex, stressful process that parents of adolescents with epilepsy and cognitive impairments traverse as they transition from pediatric to adult health care. Barriers to transitioning as well as enabling factors were elucidated; these findings provide evidence to support the necessity of developing health care transition programs and generate questions for future research. Parents in this study described some experiences that are similar to those reported in the literature. None of the seven parents had received any transition planning with regard to health care. Furthermore, the underlying factor that initiated the Several factors that transition in six of the enabled transition seven cases was the fact that they had aged were revealed in out of treatment, either this study: because of the hospiestablishing an tal’s or provider’s limit for services or because interpersonal of changes in funding parent-provider for health care, that is, relationship, Medicaid versus Medicare. Other investigaparental advocacy, tors have reported and networking. lack of preparation for transitioning (Scal & Ireland, 2005; Ward et al., 2003), aging out of the system, and insurance/funding coverage as barriers to transitioning (Reiss et al., 2005). Similar to the findings of others (Hauser & Dorn, 1999; Reiss et al., 2005), all of the parents expressed fear of leaving a system or providers who were familiar with them and with whom they had developed a collaborative relationship. In 364
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contrast, the intense feelings of rejection and uncertainty associated with transitioning that parents expressed in this study have not been reported. Several factors that enabled transition were revealed in this study: establishing an interpersonal parentprovider relationship, parental advocacy, and networking. Similar to other studies (Brumfield & Lansbury, 2004; Reiss et al., 2005; Scal & Ireland, 2005; Shaw et al., 2006), four of the seven parents in this study expressed satisfaction with their transition once they established an interpersonal dialogue with their new adult health care provider. Parents emerged as advocates; they possessed a repertoire of skills that were crucial to securing care for their adolescent and traversing the maze of information from insurance/funding agencies, health care providers, and parent support groups. All of the parents indicated that networking with other parents and parent support groups was the most reliable and helpful way to locate community and funding resources. The parents in this study knew the needs of their adolescents and were tenacious in acquiring, directing, and coordinating their needs as they transitioned. These findings have not been reported in the transitioning literature. However, the parental roles of being an advocate, a guardian, and an expert were reported by Lutenbacher, Karp, Ajero, Howe, and Williams (2005) in their study of families of children with SHCNs. Similar to the findings of this study, parents reported lack of readily accessible insurance information or knowledge of how to negotiate the insurance system (Lutenbacher et al., 2005). These findings validate the importance of establishing trusting, high-quality parent-provider relationships and highlight the importance of networking and fostering advocacy skills in parents of adolescents with SHCNs. The findings of this study suggest that the complexity of the transition process was increased because of the adolescents’ severe to profound cognitive impairments and total dependence on others, rather than the effects of epilepsy. Five of the adolescents had profound cognitive impairments and two had severe cognitive impairments, and six were non-ambulatory but had relatively well-controlled seizures. The parents never mentioned ‘‘epilepsy’’ as affecting the transition process. Therefore this finding may not be representative of those who have poorly controlled epilepsy. Nonetheless, these results add to the body of literature attesting to the difficulty in transitioning adolescents with cognitive impairments (Betz et al., 2003; Magill-Evans et al., 2005; Reiss et al., 2005; Ward et al., 2003). Furthermore, the parental statements describing the difficulty in accessing adult providers who accepted Medicaid affirm the 2001 Surgeon General’s report entitled Closing the Gap, which states that individuals with cognitive impairments have more difficulty accessing and paying for health care (Surgeon General’s Conference on Health Disparities and Mental Retardation, 2002). Journal of Pediatric Health Care
Limitations of this study are that all parents lived in a large urban area and were highly educated and recruited from a parent support group, and the adolescents had severe to profound cognitive impairments and relatively well-controlled epilepsy. These parents may differ in their ability to advocate for their adolescent and therefore have different experiences in the transition process. In addition, the credibility of this study could be strengthened by returning to the participants for a follow-up interview to review the identified categories and concepts. Nonetheless, the findings of this study highlight the advocacy role of parents, the importance of family support groups, and the barriers to transitioning cognitively impaired adolescents with epilepsy. CONCLUSIONS The Journey of Advocacy demonstrates the interaction between the parents of these adolescents and individuals or systems in their environment who directly affect the transition process. Transitioning this group of adolescents was multidimensional; it not only involved locating an adult health care provider, but also other systems, including the school and insurance/government funding programs. Multiple sectors of the community interacted during the process of transitioning; unfortunately, information and services were fragmented, which led to parental turmoil, which in turn promoted parental advocacy. Clearly, national policy guidelines endorsing a planned, family-centered, coordinated, comprehensive transition process (AAP Committee on Children with Disabilities & Committee on Adolescence, 1996; Blum et al., 2002) have This study affirms not been accomplished the need to develop with this group of adolescents with severe to a transition profound cognitive improgram for this pairments and epigroup of lepsy. This study affirms the need to deadolescents that velop a transition proacknowledges the gram for this group of interrelationship adolescents that acknowledges the interbetween these relationship between parents and their these parents and their environment during environment during this process. Nurses this process. can play a pivotal role in the development and implementation of such a program. Providing holistic care that incorporates the family, their cultural beliefs, and their psychosocial needs is core to nursing. Developing programs that capitalize on the networking and advocacy skills of parents and providing them access to transparent, accurate funding and community www.jpedhc.org
resources would not only enhance their ability to assist in developing a family-centered, individualized package of resources for their adolescent but also would diminish the cycle of turmoil experienced in this process. Furthermore, easy access to community support services and funding resources would decrease dependence on agencies to assist with these services, thereby decreasing the burden on an already stressed system. Further research should be conducted to further explore and understand the transition experiences of parents of adolescents with uncontrolled epilepsy and mild to moderate cognitive impairments. These findings would allow for generalization to a broader group and lead to the development of a more comprehensive transition program. Further research on transition models is needed. Developing and measuring the outcome of a theoretically based transition program designed specifically for adolescents with epilepsy and cognitive impairments would add to the body of literature and possibly lead to improved health care not only for these parents and their adolescents, but also for other adolescents with SHCNs. As evidenced in this study, transitioning involved more that finding a health care provider; it entailed interacting with multiple sectors in the environment. An ecological framework such as Bronfenbrenner’s ecological theory (Bronfenbrenner, 1999), which includes the parent and adolescent, school, health care systems, cultural beliefs, and the economic/political system, could provide the structure for future research that incorporates all these systems. I thank my dissertation committee, Brenda Binder, PhD, RN, Lene Symes, PhD, RN, and Judith McFarlane, PhD, RN, for their expertise, time, and guidance; Elaine Hime for her assistance in recruiting families; and the parents who graciously allowed a stranger into their home and shared their personal stories of transitioning.
REFERENCES American Academy of Pediatrics, Committee on Children with Disabilities and Committee on Adolescence. (1996). Transition of care provided for adolescents with special health care needs. Pediatrics, 98(6), 1203-1206. Betz, C. L. (1998). Facilitating the transition of adolescents with chronic conditions from pediatric to adult health care and community settings. Issues in Comprehensive Pediatric Nursing, 21(2), 97-115. Betz, C. L. (2000). California Healthy and Ready to Work Transition health care guide: Developmental guidelines for teaching health care. Issues in Comprehensive Pediatric Nursing, 23(3), 203-244. Betz, C. L., Redcay, G., & Tan, S. (2003). Self-reported health care self-care needs of transition-age youth: A pilot study. Issues in Comprehensive Pediatric Nursing, 26, 159-181. Blum, R. W., Hirsch, D., Kastner, T. A., Quint, R. D., Sandler, A. D., & Anderson, S. M. (2002). A consensus statement on health care transitions for young adults with special health care needs. Pediatrics, 110(6), 1304-1306. Blumer, H. (1969). Symbolic interactionism. Englewood Cliffs, NJ: Prentice-Hall.
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Bronfenbrenner, U. (1999). Environments in developmental perspective: Theoretical and operational models. In S. L. Friedman & T. D. Wachs (Eds.), Measuring environment across the life span (pp. 3-28). Washington, DC: American Psychological Association. Brumfield, K., & Lansbury, G. (2004). Experiences of adolescents with cystic fibrosis during their transition from paediatric to adult health care: A qualitative study of young Australian adults. Disability and Rehabilitation, 26(4), 223-234. Child and Adolescent Health Measurement Initiative. (2005/2006). National survey of children with special health care needs. Data Resource Center for Child & Adolescent Health, 2005/ 2006 [Data file]. Retrieved from Data Resource Center website: http://www.cshcndata.org Court, J. M. (1993). Issues of transition to adult care. Journal of Pediatric Child Health, 29(Suppl 1), S53-S55. Glaser, B. G., & Strauss, A. L. (1965). Discovery of substantive theory: A basic strategy underlying qualitative research. American Behavioral Scientist, 8(6), 5-12. Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory. Chicago, IL: Aldine Publishing Company. Hauser, E. S., & Dorn, L. (1999). Transitioning adolescents with sickle cell disease to adult-centered care. Pediatric Nursing, 25(5), 479-488. Lincoln, Y. S., & Guba, E. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage. Lutenbacher, M., Karp, S., Ajero, G., Howe, D., & Williams, M. (2005). Crossing community sectors: Challenges faced by families of children with special health care needs. Journal of Family Nursing, 11(2), 162-182. Madge, S., & Bryon, M. (2002). A model for transition from pediatric to adult care in cystic fibrosis. Journal of Pediatric Nursing, 17(4), 283-288. Magill-Evans, J., Wiart, L., Darrah, J., & Kratochvil, M. (2005). Beginning the transition to adulthood: The experiences of six families with youths with cerebral palsy. Physical & Occupational Therapy in Pediatrics, 25(3), 19-36.
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Patton, M. Q. (1990). Qualitative evaluation and research methods. Newbury Park, CA: Sage. Reiss, J. G., Gibson, R. W., & Walker, L. R. (2005). Health care transition: Youth, family, and provider perspectives. Pediatrics, 115(1), 112-120. Scal, P., & Ireland, M. (2005). Addressing transition to adult health care for adolescents with special health care needs. Pediatrics, 115(6), 1607-1612. Shaw, K. L., Southwood, T. R., McDonagh, J. E. & (on behalf of the British Paediatric Rheumatology Group). (2004). User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology, 43, 770-778. Shaw, K. L., Southwood, T. R., & McDonagh, J. E. (2006). Young people’s satisfaction of transitional care in adolescent rheumatology in the UK. Child Care, Health and Development, 33(4), 368-379. Soanes, C., & Timmons, S. (2004). Improving transition: A qualitative study examining the attitudes of young people with chronic illness transferring to adult care. Journal of Child Health Care, 8(2), 102-112. Strauss, A. L. (1987). Qualitative analysis for social scientists. New York: Cambridge University Press. Surgeon General’s Conference on Health Disparities and Mental Retardation. (2002). Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation. Retrieved from http://www.nichd.nih.gov/publications/pubs/ closingthegap/index.cfm U.S. Department of Health & Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. (2008). The National Survey of Children with Special Health Care Needs Chartbook 2005-2006. Rockville, MD: U.S. Department of Health & Human Services. Ward, L., Heslop, P., Mallett, R., & Simons, K. (2003). Transition: The experiences of young people with learning disabilities and their families in England. Tizard Learning Disability Review, 8(4), 19-28.
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