Understanding the Role of Health Care Providers During the Transition of Adolescents With Disabilities and Special Health Care Needs

doi:10.1016/S1054-139X(02)00396-8

Journal of Adolescent Health

Volume 32, Issue 3, March 2003, Pages 225-233

https://doi.org/10.1016/S1054-139X(02)00396-8 Get rights and content

Abstract

Purpose

To evaluate the role of health care providers in the transition from pediatric to adult health care for adolescents with disabilities and special health care needs (SHCN) from both the families’ and providers’ perspectives.

Methods

A total of 753 parents of adolescents with SHCN (e.g. developmental, physical, behavioral/emotional, learning, or health-related disabilities) were surveyed by questionnaire to assess their perceptions of their health care provider’s level of involvement in various transition activities and the extent to which they felt it was the provider’s responsibility to assist in a particular activity. One hundred forty-one health care providers (primarily pediatricians) completed a parallel survey to assess their level of participation in the same transition activities and the extent to which they felt it was their responsibility to assist with each transition activity. The questionnaire listed 13 different transition activities health providers may engage in to help young people prepare for adulthood and also asked questions about areas such as employment and health insurance. To investigate whether parents and providers share the same views regarding the involvement and responsibility of providers across the 13 transition activities, two sets of Student’s t-tests were calculated.

Results

There were significant differences between providers and parents concerning both the level of provider involvement and the extent to which it was the provider’s responsibility to assist in various transition activities (e.g., health providers reported significantly more involvement than did parents for 11 of the 13 transition activities and, compared with parents, providers reported that it was more within their role to assist in these 11 transition activities).

Conclusion

The findings suggest a need for health care providers and parents to have open discussions about the nature and extent to which providers assist families in key transition activities.

Section snippets

Transition and health care

It is important that adolescents with SHCN transition from pediatric to adult health care in a thoughtful, supported, and coordinated way. The belief that an adolescent should be shifting toward an adult care provider helps to move responsibility, decision-making, and control from the parent to the young adult and is based on the philosophy that youth are expected to mature and become more independent as they enter the adult world [8]. It is also important that the approaches used by health

The role of health in other areas of transition

Transition is more than movement from pediatric to adult health care. Rather, transition is multidimensional and involves other important areas such as employment, education, independent living, and community inclusion. However, health transition facilitates or affects transition in these other areas as well. Although the role of the health care professional in general areas of transition has focused primarily on mental health [9], the health care professional can assume an important and active

Sample

The questionnaire was mailed to 2397 parents whose children fell between the ages of 13 and 21 years and experienced a physical, developmental, behavioral/emotional, learning, or health-related disability. Parents were identified through either Portland Public Schools (a large urban school district in Oregon) or Oregon’s Title V Program. The survey was also mailed to 409 physicians identified through the Oregon Pediatric Society (state chapter of the American Academy of Pediatrics) and Oregon’s

Acknowledgements

We are grateful to Ardis Olson at Dartmouth Medical School, Mary Oschwald at Oregon Health & Science University, and Catherine Renken and Kathleen Williams at Oregon Title V for their input and assistance with the study. In addition, we would like to thank the parents and providers who participated in the study for their willingness to share their views and experiences with us.

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Caregiver reports of physician risk counseling for adolescents with special health care needs
2022, Patient Education and Counseling
Citation Excerpt :
For example, doctors viewed helping an adolescent learn how to self-manage their health conditions as more important than did parents [19]. Similarly, although parents of children with special healthcare needs rated discussions with providers about ‘drugs and alcohol’ and ‘sexual issues’ among the least important topics, providers felt these areas were significantly more important [19]. This view more closely aligns with those of the adolescents, who desire discussions with their provider about risky behaviors, and the option to see their provider privately to facilitate these discussions [15–17,20–22].
Research has indicated disagreement between physicians, caregivers, and adolescents with special health care needs regarding appropriate risk counseling.
The study examines caregivers’ perceptions of adolescent risk counseling. We hypothesize caregivers of adolescents with special healthcare needs will perceive a lower rate of risk counseling.
Data come from the 2016 National Survey of Children’s Health. The sample included 13,542 adolescents. Analysis completed using logistic regression with odds ratios.
The results indicate no difference in caregiver perceptions of risk counseling for adolescents with special healthcare needs. Gender, race/ethnicity, and relationship between caregiver and provider influenced perception of receipt of risk counseling, regardless of health status.
Although adolescents with special healthcare needs perceive their risk behavior counseling to be lacking in quantity/quality, caregivers perceive such counseling does occur. These results highlight the need for comprehensive risk counseling for groups at risk of known health disparities.
Physicians and providers should be provided with the training and resources needed to be comfortable to engage in risk counseling. Adolescents need the opportunity to see their provider privately, and education to advocate for information risky behaviors. Parents, providers, and adolescents should be included in future risk counseling intervention plans.
Perceptions of adult and child neurologists of transition programs in epilepsy in Latin America: A cross-sectional study
2020, Epilepsy and Behavior
The objective of this study was to review the existence and opinion Latin American adult and child neurologists have about the development and function of transition programs in epilepsy.
This was a cross-sectional study. A questionnaire was constructed with sociodemographic variables, knowledge about transition programs, barriers for building up transition programs, and 21 topics regarding the degree of involvement of healthcare providers and carers should have during the transition process. The online questionnaire was sent to 136 Latin American chapter officers registered in the International League Against Epilepsy (ILAE) webpage and to 36 clinicians assisting to the 13th Latin American Summer School on Epilepsy.
The answer rate was 68% (117/172), and all 19 Latin American countries were represented. Adult neurologists represented 60.7%. Only 16.2% knew of transition programs in epilepsy. The main limitations for transition programs were poor education about transition (76.9%), inflexible healthcare systems (75.2%), absence of financial support (61.5%), need of multidisciplinary teams (59%), and scarce communication between child and adult neurologists (53%). Providers and carers are expected to get involved at a high degree in all 21 presented topics for a transition process. The topics with highest percentage of commitment were violence and carrying weapons (93.2%), mental health (92.3%), alcohol and drugs (91.4%), suicide (90.6%), care of own's disease (90.5%), mortality risk (89.7%), and integral healthcare (92.2%).
Only a few transition programs exist in Latin America. Knowing the benefits of and barriers for transition programs opens the opportunity to move further this strategy in the region considering local specificities. Education, communication skills, team working, and advocacy for adolescents with epilepsy could be initial starting points.
Transition of patients with childhood onset epilepsy: Perspectives from pediatric and adult neurologists
2020, Epilepsy and Behavior
Citation Excerpt :
Transition in patients followed in pediatric neurology has been little studied in comparison with the transition in chronic diseases like diabetes mellitus [5–8] or cystic fibrosis [9–11]. This is surprising considering that cognitive impairment and progressive disability with specific healthcare needs are among the principal medical barriers for a good transition [12,13]. In a previous study regarding the user points of view, 40% of patients with Dravet syndrome estimated that the quality of the preparation was inadequate [14].
Transition from pediatric to adult care systems is a major challenge in the management of adolescents with epilepsy. The comparison of pediatric and adult physicians' points of view on this issue is scarcely described. The aim of this study was to understand pediatric and adult neurologists' experience and opinions on transition in epilepsy in France. We investigate the age at which they usually transfer patients, their opinion on the factors that positively or negatively impact transition, on the help provided during this transition period, and their propositions to improve this process. We prepared a targeted questionnaire with two versions, one adapted for neurologists and the other for child neurologists. The questionnaires were diffused through the Reference Centre for Rare Epilepsies, the French Chapter of the League Against Epilepsy, the French Association for Office-based Neurologists, and the French Pediatric Neurology Society. A total of sixty-eight physicians involved mostly in epilepsy care answered this questionnaire: 39 child neurologists and 29 neurologists. Questionnaires were filled at 96.8%. Twenty-six child neurologists followed patients aged over 18 years (70%), and 18 neurologists followed patients under the age of 12 years (66.6%). Cognitive impairment in childhood led significantly to a later transfer to adult care. The major factors believed to delay the transfer were attachment between child neurologists and families as reported in 96.3% by neurologists and in 81.1% by child neurologists, p = 0.07 and lack of adaptation of adult neurology facilities to adolescents especially with intellectual disability (59.3% neurologists, 75.7% child neurologists, p = 0.16). Factors that helped a transfer around 18–19 years were mainly pharmacoresistant epilepsy (71% for neurologists vs. 19% for child neurologists, p < 10⁵) and pregnancy (72% for child neurologists versus 50% for neurologists, p = 0.08). Factors that negatively impacted transition were the lack of information about daily life in adulthood (driving license, contraception, sexuality, carrier guidance, etc.), the weak transition preparation in pediatric system, the lack of knowledge of pediatric epilepsy syndromes, and the lack of global support for patients with intellectual disability and multidisciplinary care needs in adult system. Both groups proposed joint clinics (> 65% of providers) and development of care networks between pediatric and adult care for patients with epilepsy (> 55%) to improve transition as well as introducing courses on transition. Few physicians were aware of transition and transfer recommendations.
Although child and adult neurologists still have some preconceived beliefs, they were able to identify the strengths and weaknesses of both care systems paving the way for proposals to improve transition and transfer of patients with epilepsy from pediatric to adult care.
Systematic review of study designs and methods in health transition research for young people with intellectual disabilities
2019, Heliyon
Transition for young people with intellectual disabilities from paediatric or adolescent services into adult health care services remains a difficult process for all stakeholders. The study assessed the type of interventions, the methodological approaches, study designs and location of existing published evidence in health care transitions.
A systematic review utilising the PRISMA protocol with an amended quality appraisal tool to explore the nature of published evidence on health care transitions for young people.
Findings demonstrate that health transition research for this population lacks a robust evidence base and researchers favour exploratory studies investigating the experiential dimension of transition. The lack of involvement of young people in the studies indicates a problematic absence of genuinely participatory research.
The study is the first systematic review of empirical studies in health transition of young people with intellectual disabilities exploring the nature of existing evidence. The results will support setting priorities for future research.
How do paediatric psychologists represent the transition to the adult environment? A qualitative study of perceived facilitators and barriers
2018, Pratiques Psychologiques
La transition entre les milieux pédiatrique et adulte est souvent source de difficultés pour les jeunes patients atteints d’une maladie sévère. L’objectif de cette étude qualitative était d’obtenir une définition et caractériser la transition en interrogeant des psychologues en pédiatrie.
Dix psychologues ont répondu à un entretien de recherche semi-structuré qui a été audio-enregistré.
L’analyse thématique des verbatims a permis de dégager des thèmes communs aux participants quant à la représentation de la transition, aux facilitateurs et obstacles rencontrés dans leur travail.
Cette recherche a permis de mettre en évidence des nouveaux éléments dans le travail des psychologues par rapport à la transition tels que le jugement clinique, les aspects relationnels et les liens d’attachement.
Transition between the paediatric and adult environments is often a challenge for young patients with severe diseases. The objective of this qualitative study was to define and identify descriptive characteristics of the transition by interviewing paediatric psychologists.
Ten psychologists responded to a semi-structured research interview that was audiotaped.
The thematic analysis of the verbatim revealed common themes among participants regarding the representation of the transition as well as the facilitators and obstacles encountered in their work.
This research has highlighted new elements in the work of psychologists with regards to the transition process such as clinical judgment, interpersonal aspects and therapeutic alliance.
The Medical Transition from Pediatric to Adult-Oriented Care: Considerations for Child and Adolescent Psychiatrists
2018, Child and Adolescent Psychiatric Clinics of North America

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^☆: This study was supported in part by grant #93.110D from the U.S. Department of Health and Human Services, Bureau of Maternal and Child Health. The views stated in this report to do not necessarily reflect those of the funders.

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Original articleUnderstanding the Role of Health Care Providers During the Transition of Adolescents With Disabilities and Special Health Care Needs☆

Abstract

Purpose

Methods

Results

Conclusion

Section snippets

Transition and health care

The role of health in other areas of transition

Sample

Acknowledgements

J Adolesc Health

J Adolesc Health

Prevalence and impact of chronic illness among adolescents

Am J Dis Child

Improved disability population estimates of functional limitation among American children 5–17

Matern Child Health J

Prevalence and impact of disabling chronic conditions in childhood

Am J Public Health

The IDEA AmendmentsA four step approach for determining supplementary aids and services

Except Child

Longitudinal postschool outcomes of youth with disabilitiesFindings from the National Longitudinal Transition Study

Except Child

Original article
Understanding the Role of Health Care Providers During the Transition of Adolescents With Disabilities and Special Health Care Needs☆