We Got to Move it, Move it: The Lived Experiences of Family Carers of Youth with Chronic Neurodevelopmental Disorders as They Enter into Adult Health Care
Michelle G. Sy, Maria Minerva P. Calimag, Rosalina Q. de Sagun, Maria Antonia Aurora M. Valencia
May 2020 DOI 10.35460/2546-1621.2019-0070 Access
Background and objective
Neurodevelopmental disabilities in adolescents have significant effects on medical and social function. One of these challenges is their transition into adult care. Parental involvement is critical because these young adults may have more difficulties in making informed decisions independently. Thus, the transition process involves not only the direct health care needs of the young adult, but the needs and concerns of the parents or carers who are instrumental in guiding that process. This study aims to explore the expectations and experiences of family carers of youths with chronic neurodevelopmental disorders who have undergone or are about to undergo transition into adult healthcare in a Filipino-based health care system.
A descriptive phenomenology was used to gain an in-depth understanding of parents’ perceptions and experiences of their youths’ transition process from a pediatric to an adult health care setting. The results were analyzed manually using Colaizzi’s method, which involves integrating both the destructured and restructured analysis principles of phenomenology. Purposive sampling was used to interview 13 family carers of 13 youths with various neurodevelopmental disorders using a semi-structured interview questionnaire.
Despite the lack of information on the transition process, our study found that carers did not have a strong inclination to resist the transition event. Most of the carers treat the health care provider as a major decision maker in determining the timing and manner of transition, adopting a “doctor knows best” attitude. Several other hindrances and facilitators to successful transition were also identified and are similar to the current literature.
This study provides a greater understanding of carers’ perceptions and experiences of transition care for youths with neurodevelopmental disorders in the local setting. They exhibited trust and confidence in the medical profession as a whole, and had a “doctor knows best” attitude that may enable successful transitioning.
- Stewart D. Transition to adult services for young people with disabilities: current evidence to guide future research. 2009;51:169–73.
- Camfield P, Camfield C. Transition to adult care for children with chronic neurological disorders. Annals of Neurology [Internet]. 2011;69(3):437–44. Available from: https://onlinelibrary.wiley.com/doi/abs/10.1002/ana.22393
- Andrade DM, Bassett AS, Bercovici E, Borlot F, Bui E, Camfield P, et al. Epilepsy: Transition from pediatric to adult care. Recommendations of the Ontario epilepsy implementation task force. Epilepsia. 2017;58(9):1502–17.
- Epilepsy: addressing the transition from pediatric to adult care. Adolesc Health Med Ther. 2016;77–87.
- Carrizosa J, An I, Appleton R, Camfield P, Moers A Von. Transition of epilepsy care from children to adults. Models for transition clinics. Transition in Canada. 2014;55:46–51.
- Patel A. Lost in transition? A practice tool for finding your way to adulthood. Epilepsy Curr. 2013 Jul;13(4):186–7.
- Adams RC, Levy SE. Shared Decision-Making and Children With Disabilities: Pathways to Consensus. Pediatrics [Internet]. 2017 May 29;139(6):e20170956. Available from: http://dx.doi.org/10.1542/peds.2017-0956
- Racine E, Bell E, Yan A, Mdcm GA, Mdcm LEB, Clarke M, et al. Ethics challenges of transition from paediatric to adult health care services for young adults with neurodevelopmental disabilities. 2014;19(2):65–8.
- Young NL, Barden WS, Mills WA, Burke TA, Law M, Boydell K. Transition to adult-oriented health care: Perspectives of youth and adults with complex physical disabilities. Phys Occup Ther Pediatr. 2009;29(4):345–61.
- Gauthier-Boudreault C, Gallagher F, Couture M. Research in developmental disabilities specific needs of families of young adults with profound intellectual disability during and after transition to adulthood: What are we missing? Res Dev Disabil. [Internet]. 2017;66(June 2016):16–26. Available from: http://dx.doi.org/10.1016/j.ridd.2017.05.001
- Magill-evans J, Wiart L, Darrah J, Kratochvil M, Wiart L, Darrah J, et al. Physical & occupational therapy in pediatrics beginning the transition to adulthood beginning the transition to adulthood: the experiences of six families with youths with cerebral palsy. 2016;2638(March).
- Crane S, Self A, Network A. Autistic self advocacy network. 2013;(July):1–12.
- Heus KGCBB, Staa A Van, Vliet I Van, Ewals FVPM, Hilberink SR. Transferring young people with profound intellectual and multiple disabilities from pediatric to adult medical care: parents’ experiences and recommendations. 2013;51(3):176–89.
- Brown M, Macarthur J, Higgins A, Chouliara Z. Transitions from child to adult health care for young people with intellectual disabilities: A systematic review. J Adv Nurs. 2019;0–2.
- Morsa M, Gagnayre R, Deccache C, Lombrail P. Patient education and counseling factors influencing the transition from pediatric to adult care: A scoping review of the literature to conceptualize a relevant education program. 2017;100:1796–806.
- Gabriel P, McManus M, Rogers K, White P. Outcome Evidence for Structured Pediatric to Adult Health Care Transition Interventions: A Systematic Review. The Journal of Pediatrics [Internet]. 2017 Sep;188:263-269.e15. Available from: http://dx.doi.org/10.1016/j.jpeds.2017.05.066
- Wang G, McGrath BB, Watts C. Health Care Transitions Among Youth With Disabilities or Special Health Care Needs: An Ecological Approach. Journal of Pediatric Nursing [Internet]. 2010 Dec;25(6):505–50. Available from: http://dx.doi.org/10.1016/j.pedn.2009.07.003
- Sonneveld HM, Strating MMH, van Staa AL, Nieboer AP. Gaps in transitional care: what are the perceptions of adolescents, parents and providers? Child: Care, Health and Development [Internet]. 2012 Feb 13;39(1):69–80. Available from: http://dx.doi.org/10.1111/j.1365-2214.2011.01354.x
- Davies BH, Cnn C, Rennick J, Majnemer A. Transition from pediatric to adult health care for young adults with neurological disorders: Parental Perspectives. 2011;33(2).
- Tuffrey C, Pearce A. Transition from paediatric to adult medical services for young people with chronic neurological problems. J Neurol Neurosurg Psychiatry. 2003 Aug;74(8):1011–3.
- Mu PF. Transition experience of parents caring of children with epilepsy: A phenomenological study. Int J Nurs Stud. 2008;45(4):543–51.
- Cabbeh KD, Jerome B, Villafuerte A, Kaye J, Ruiz O, Adanza JR. Lived experiences of parents of children with intellectual disability undergoing pre-vocational education. 2015;3:1–15.
- Schultz RJ. Parental experiences transitioning their adolescent with epilepsy and cognitive impairments to adult health care. J Pediatr Heal Care [Internet]. 2013;27(5):359–66. Available from: http://dx.doi.org/10.1016/j.pedhc.2012.03.004
- Kuhlthau KA, Delahaye J, Erickson-Warfi M. Health care transition services for youth with autism spectrum disorders: Perspectives of caregivers. 2016;137(February).
- Burkhard A. A different life: caring for an adolescent or young adult with severe cerebral palsy. J Pediatr Nurs [Internet]. 2013;28(4):357–63. Available from: http://dx.doi.org/10.1016/j.pedn.2013.01.001
- Norlyk A. Qualitative Health Research. 2014;(February).
- Lopez KA, Willis DG. Qualitative health research descriptive versus interpretive phenomenology: their contributions to nursing knowledge. 2014;(June 2004).
- Banchetti-Robino MP. Phenomenology of science and the problem of induction. 1995.
- Morley J. The descriptive phenomenological psychological method. 2017;(July).
- Groenewald T. A phenomenological research design illustrated. 2004;42–55. Available from: https://doi.org/10.1177/160940690400300104
- Shenton AK. Strategies for ensuring trustworthiness in qualitative research projects strategies for ensuring trustworthiness in qualitative research projects. 2016;(July 2004).
- Nowell LS, Norris JM, White DE, Moules NJ. Thematic analysis: Striving to meet the trustworthiness criteria. 2017;16:1–13. Available from: https://doi.org/10.1177/1609406917733847
- Anney VN, Dar POB, Salaam E. Ensuring the quality of the findings of qualitative research: Looking at trustworthiness criteria. 2014;5(2):272–81.
- Campbell F, Biggs K, Sk A, Pm ON, Clowes M, Mcdonagh J, et al. Transition of care for adolescents from paediatric services to adult health services (Review) Summary of findings for the main comparison. 2016;(4).
- Wong LHL, Chan FWK, Wong FYY, Wong ELY, Huen KF, Yeoh EK, et al. Transition care for adolescents and families with chronic illnesses. J Adolesc Heal [Internet]. 2010;47(6):540–6. Available from: http://dx.doi.org/10.1016/j.jadohealth.2010.04.002
- Jin YT, Chen CM, Chien WC. Factors influencing transitional care from adolescents to young adults with cancer in Taiwan: A population-based study. BMC Pediatr [Internet]. 2016;16(1):1–8. Available from: http://dx.doi.org/10.1186/s12887-016-0657-z
- Ishizaki Y, Maru M, Higashino H, Katsumoto S, Egawa K, Yanagimoto Y, et al. The transition of adult patients with childhood-onset chronic diseases from pediatric to adult healthcare systems: A survey of the perceptions of Japanese pediatricians and child health nurses. Biopsychosoc Med [Internet]. 2012;6(1):8. Available from: http://www.bpsmedicine.com/content/6/1/8
- Ishizaki Y, Higashino H, Kaneko K. Promotion of the transition of adult patients with childhood-onset chronic diseases among pediatricians in Japan. Front Pediatr. 2016;4(Oct):1–5.
- vanStaa AL, Jedeloo S, van Meeteren J, Latour JM. Crossing the transition chasm: Experiences and recommendations for improving transitional care of young adults, parents and providers. Child Care Health Dev. 2011;37(6):821–32.
- McLaughlin LA, Braun KL. Asian and Pacific islander cultural values: Considerations for health care decision making. Heal Soc Work. 1998;23(2):116–26.
- Weijer C. Bioethics: An anthology. BMJ. 2000;320(7243):1215.
- Reiss JG, Gibson RW, Walker LR. Health Care Transition: Youth, Family, and Provider Perspectives. Pediatrics [Internet]. 2005 Jan;115(1):112–20. Available from: http://dx.doi.org/10.1542/peds.2004-1321
- Camfield P, Camfield C, Pohlmann-Eden B. Transition from pediatric to adult epilepsy care: A difficult process marked by medical and social crisis. Epilepsy Curr. 2012;12(4_suppl):13–21.
- Franklin MS, Beyer LN, Brotkin SM, Maslow GR, Pollock MD, Docherty SL. Health care transition for adolescent and young adults with intellectual disability: Views from the parents. J Pediatr Nurs. 2019;47:148–58.
- Cheak-Zamora NC, Teti M, First J. “Transitions are Scary for our Kids, and They’re Scary for us”: Family member and youth perspectives on the challenges of transitioning to adulthood with autism. J Appl Res Intellect Disabil. 2015;28(6):548–60.
- Iyer A, Rajendran S. Epilepsy: addressing the transition from pediatric to adult care. Adolesc Health Med Ther. 2016; 7:77–87.
- Camfield PR, Gibson PA, Douglass LM. Strategies for transitioning to adult care for youth with Lennox-Gastaut syndrome and related disorders. Epilepsia. 2011;52(Suppl. 5):21–7.
- Gorter JW. Transition to adult-oriented health care: Perspectives of youth and adults with complex physical disabilities. 2009;29(4):362–7.
Articles related to the one you are viewing
There are currently no results to show, please try again later
CC BY: Open Access Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/