Journal of Pediatric Rehabilitation Medicine - Volume 7, issue 1

Article Type: Other

DOI: 10.3233/PRM-140268

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 7, no. 1, pp. 1-2, 2014

Authors: Betz, Cecily L. | Ferris, Maria E. | Woodward, Jason F. | Okumura, Megumi J. | Jan, Sophia | Wood, David L.

Article Type: Research Article

Abstract: The body of health care transition (HCT) research is in the early stages of development. One of the major limitations of this developing field of research is the lack of theoretically-directed studies. This research limitation has hindered understanding of the variables contributing to successful HCT. The inadequate understanding of HCT is due largely to the absence of an adequate conceptual model that addresses the complexity and the relationships amongst variables that influence HCT outcomes among adolescents …and emerging adults with special health care needs (AEA-SHCN). Existing conceptual models do not sufficiently address the significant interrelationships amongst variables to explain, predict and/or control AEA-SHCN's biopsychosocial HCT outcomes. This article provides a description of a health care transition theoretical model developed by the international and interdisciplinary Health Care Transition Research Consortium (HCTRC) that can be applied for testing in research and serve as a framework for clinical practice and policymaking. The HCTRC model is composed of four domains that are considered integral to the HCT phenomenon: Individual, Family/Social Support, Environment, and the Health Care System. The HCTRC model specifies the variables, processes, and potential mediators and moderators that affect the HCT outcomes. Show more

Keywords: Health care transition, theoretical framework, health care transition model, adolescents and emerging adults with special health care needs

DOI: 10.3233/PRM-140277

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 7, no. 1, pp. 3-15, 2014

Authors: DiFazio, Rachel L. | Harris, Marie | Vessey, Judith A. | Glader, Laurie | Shanske, Susan

Article Type: Research Article

Abstract: PURPOSE: To describe and define the experiences of adults with cerebral palsy (CP) and parents of adults with CP who have been involved in a transfer of physiatry care from pediatric to adult healthcare and to explore their experiences more generally in the transition from pediatric to adult services. METHODS: A qualitative research approach was used. Semi-structured focus group interviews were conducted with adults with CP (n=5) and parents of adults with CP (n=8) to …explore the health care transition (HCT) process from pediatric to adult healthcare. Four key content domains were used to facilitate the focus groups; 1) Transition Planning, 2) Accessibility of Services, 3) Experience with Adult Providers, and 4) Recommendations for Improving the Transition Process. Conventional content analysis was used to analyze the data. RESULTS: Four themes emerged from the focus groups; Lost in Transition, Roadmap to Care, List of None, and One Stop Shopping. Participants felt lost in the HCT process, requested a transparent transition plan, expressed concern regarding access to adult healthcare, and made recommendations for improvements. CONCLUSION: Challenges in transitioning from pediatric to adult health care were identified by all participants and several strategies were recommended for improvement. Show more

Keywords: Cerebral palsy, health care transition, physiatry

DOI: 10.3233/PRM-140276

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 7, no. 1, pp. 17-31, 2014

Authors: Peeters, Mariëlle A.C. | Hilberink, Sander R. | van Staa, AnneLoes

Article Type: Research Article

Abstract: PURPOSE: To gain insight into the development of young persons with chronic conditions towards independence by comparing their lived experiences to those of their parents. METHODS: Semi-structured interviews were held with 16 young persons (7 males, 9 females; 15–22 years) and one of their parents (n=16), asking about the young persons' daily lives and their development towards adulthood. Themes were deductively derived from the Skills for Growing Up framework, i.e. agency, living and daily …activities, social and intimate relationships, education, work, leisure activities, transportation, and healthcare. Parents also reflected on how they dealt with the child's chronic condition. A paired thematic analysis was conducted. RESULTS: Parents were often less convinced that their children could act independently than the young persons themselves. They were concerned about them and tended to interfere with their daily lives, often to the annoyance of their children. Also, parents often perceived more barriers in social participation, while young persons were more positive. CONCLUSION: The perceptions of young persons and their parents clashed on living independently, intimate relationships, leisure activities, and healthcare. Young people might benefit from professional support in these domains to help them strengthen their autonomy and to prevent child-parent conflict and negative outcomes. Show more

Keywords: Young persons, chronic conditions, parents, transition, lived experiences

DOI: 10.3233/PRM-140272

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 7, no. 1, pp. 33-42, 2014

Authors: Fernandes, Susan M. | O'Sullivan-Oliveira, Joanne | Landzberg, Michael J. | Khairy, Paul | Melvin, Patrice | Sawicki, Gregory S. | Ziniel, Sonja | Kenney, Lisa B. | Garvey, Katharine C. | Sobota, Amy | O'Brien, Rebecca | Nigrovic, Peter A. | Sharma, Niraj | Fishman, Laurie N.

Article Type: Research Article

Abstract: PURPOSE: To determine patients' and parents' perceptions regarding the delivery of transition education and perceived barriers to transfer to adult oriented care. METHODS: A self-report survey was administered to a convenience sample of patients (16–25 years old) with various childhood onset chronic diseases. A similar survey was administered to their parents/guardians. RESULTS: A total of 155 patients and 104 parents participated in the study. The mean age of patients was 18.8 ± …2.3 years; 57% were female. Although most patients and parents reported receiving information and training about their medical condition, significant gaps in other aspects of transition education were identified. These included stated deficiencies in education regarding unprotected intercourse, health of future offspring, birth control, pregnancy, illicit drug use, and future career or vocation counseling. Commonly cited barriers to transfer were emotional attachments and lack of adult medicine specialty providers; however, the majority anticipated being ready to transfer to adult oriented care by age 25 years. CONCLUSION: There are significant gaps in the delivery of transition education as perceived by patients and their parents. Standardization of transition education may help ensure that patients acquire the knowledge and skills for health care self-management in adulthood and successful transfer to adult oriented care. Show more

Keywords: Health care transition, health care self-management, pediatric onset chronic disease

DOI: 10.3233/PRM-140269

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 7, no. 1, pp. 43-51, 2014

Authors: Alriksson-Schmidt, Ann | Hägglund, Gunnar | Rodby-Bousquet, Elisabet | Westbom, Lena

Article Type: Research Article

Abstract: OBJECTIVE: To describe the process of providing healthcare through the transition years to individuals with cerebral palsy (CP) and to present data on living arrangements, education/occupation status, and use of personal assistance in young Swedish adults with CP. METHODS: A descriptive cross-sectional study of 102 participants (63 males) participating in a standardized follow-up program called CPUP. Data were analyzed in relation to the Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification …System (MACS). RESULTS: Of the participants, 58 "lived with parents", 29 reported "independent living", and 15 reported "special service housing". Living arrangements differed among GMFCS levels (p< 0.001) and 14 of 20 with severe disabilities lived with their parents. Thirty-four of 70 reported personal assistance; use of assistance correlated (p< 0.001) with GMFCS (r^{s} =0.71) and MACS (r^{s} = 0.70). Thirty five were "students", 20 "employed", 36 in "daily activities", and 9 were "unemployed". Of those employed, 18 had GMFCS levels I-II. CONCLUSION: Some young adults with CP and severe functional limitations manage independent living – however, many still live with their parents. Although many are students, a large number are unemployed. There is disconnect between the pediatric and adult healthcare systems. CPUP may facilitate in making the transition smoother. Show more

Keywords: Transition, cerebral palsy, young adulthood

DOI: 10.3233/PRM-140273

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 7, no. 1, pp. 53-61, 2014

Authors: McLaughlin, Suzanne Elizabeth | Machan, Jason | Fournier, Phillip | Chang, Tamara | Even, Katelyn | Sadof, Matthew

Article Type: Research Article

Abstract: PURPOSE: To assess the willingness of adult primary-care physicians to transfer young adults with special health care needs (YASHCN) into their practices, and the relative impact of patient characteristics and transition supports. METHODS: Survey of primary care internists and family practitioners using randomized patient characteristics and transition supports in clinical vignettes to assess physician willingness to accept a YASHCN into their practice. RESULTS: 404 responses were received from 601 …surveys (response rate 67%). Only 44% rated themselves "willing" or "enthusiastic" to accept a YASHCN. Using four-way ANOVA testing, provider and practice characteristics significantly associated with willingness to accept included gender, years in practice, presence of YASHCN in current practice and whether the practice was accepting new patients. Patient condition and transition support significantly affected willingness to accept; training in internal medicine versus family practice did not. CONCLUSION: Physicians providing primary care for adults express limited willingness to accept YASHCN into their practices. Provider, practice and patient characteristics affected willingness to accept. Although transition supports affected willingness to accept, effects varied markedly across diagnoses and physician gender. Findings have implications for patients and healthcare teams and policy planners. Show more

Keywords: Health care transition, transition to adult care, adolescents with special health care needs

DOI: 10.3233/PRM-140275

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 7, no. 1, pp. 63-70, 2014

Authors: Altman, Stephanie | O'Connor, Sarah | Anapolsky, Ellyce | Sexton, Laura

Article Type: Research Article

Abstract: While all children face challenges as they become adults, children with chronic medical conditions or disabilities face unique barriers in their transition to adulthood. Children, especially those who are low income and have special needs, are eligible for a range of supports including income supports, health care coverage, vocational and educational supports. These supports are critical to sound health because they ensure access to necessary medical services, while also offsetting the social determinants that negatively affect …health. Unfortunately, as children transition into adulthood, eligibility for these benefits can change abruptly or even end entirely. If medical providers have a better understanding of five transition key dates, they can positively impact their patients' health by ensuring continuous coverage through the transition to adulthood. The key dates are as follows: (1) transition services for students with an Individualized Education Program (IEP) must begin by age 16 (in some states such as Illinois, these services must be in place by age 14 1/2); (2) at age 18, eligibility for income supports may change; (3) at age 19, eligibility for Medicaid may change; (4) at graduation, eligibility for educational supports will end unless steps are taken to extend those benefits until age 22; and (5) when individuals prepare to enter the workforce, they will become eligible for vocational rehabilitation services. With an understanding of these key transition dates and how to partner with social services and advocacy organizations on behalf of their patients, medical providers can help to ensure that transition-age patients retain the holistic social services and supports they need to protect their health. Show more

Keywords: Transition, children, youth, medical-legal partnership, Medicaid, disability, Social Security, public benefits, health insurance, Affordable Care Act, vocational rehabilitation

DOI: 10.3233/PRM-140270

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 7, no. 1, pp. 71-77, 2014

Authors: Hamdani, Yani | Proulx, Meghann | Kingsnorth, Shauna | Lindsay, Sally | Maxwell, Joanne | Colantonio, Angela | Macarthur, Colin | Bayley, Mark

Article Type: Research Article

Abstract: PURPOSE: LIFEspan is a service delivery model of continuous coordinated care developed and implemented by a cross-organization partnership between a pediatric and an adult rehabilitation hospital. Previous work explored enablers and barriers to establishing the partnership service. This paper examines healthcare professionals' (HCPs') experiences of 'real world' service delivery aimed at supporting transitional rehabilitative care for youth with disabilities. METHODS: This qualitative study – part of an ongoing mixed method …longitudinal study – elicited HCPs' perspectives on their experiences of LIFEspan service delivery through in-depth interviews. Data were categorized into themes of service delivery activities, then interpreted from the lens of a service integration/coordination framework. RESULTS: Five main service delivery themes were identified: 1) addressing youth's transition readiness and capacities; 2) shifting responsibility for healthcare management from parents to youth; 3) determining services based on organizational resources; 4) linking between pediatric and adult rehabilitation services; and, 5) linking with multi-sector services. CONCLUSIONS: LIFEspan contributed to service delivery activities that coordinated care for youth and families and integrated inter-hospital services. However, gaps in service integration with primary care, education, social, and community services limited coordinated care to the rehabilitation sector. Recommendations are made to enhance service delivery using a systems/sector-based approach. Show more

Keywords: Transition, childhood disability, young adults, service delivery, coordinated care, continuity of care

DOI: 10.3233/PRM-140271

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 7, no. 1, pp. 79-91, 2014

Authors: Ciccarelli, Mary R. | Brown, Matthew W. | Gladstone, Erin B. | Woodward, Jason F. | Swigonski, Nancy L.

Article Type: Research Article

Abstract: PURPOSE: Significant gaps in care and limited existing models establish the need to innovate systems of care for youth with special health care needs in the transition between pediatric to adult health care settings. METHODS: Using implementation science, a statewide transition support program was created. University and community partners explored needs and adopted a strategic plan and funding sources. The existing consensus statement provided a framework. A team was hired, policies were piloted and the initial …ambulatory consultative transition service for youth with special needs ages 11 to 22 was launched. Full program activities during year four were analyzed. RESULTS: During 2011, there were 139 consultations for youth with intellectual disability and/or physical disability (average 16.74 years, 46% female). Services include routine and focused co-morbidity screening and recommendations, care coordination of complex health and community service needs, and support for families. The evolving transdisciplinary team adapted their methods to collaborate with a growing population of youth and primary care providers. CONCLUSION: A statewide transition support program is a viable delivery model to provide needed resources for youth, families and primary care practices. Weekly improvement meetings continue to adapt services to sustain family satisfaction and community provider satisfaction. Show more

Keywords: Adolescent health services, implementation science, intellectual disability, physical disability, transition to adult care, consultation and referral, program development, youth with special health care needs

DOI: 10.3233/PRM-140274

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 7, no. 1, pp. 93-104, 2014