Advertisement

Parents' experiences with health care transition of their adolescents and young adults with medically complex conditions: A scoping review

      Highlights

      • As chronic childhood conditions are treated successfully, an increasing number of AYAs navigate health care transition (HCT).
      • Parents play an important role in HCT. Understanding factors that influence their readiness for their child's HCT is vital.
      • This scoping review revealed themes among facilitators and barriers to parental readiness for HCT.
      • Further study of parents' eperiences will better inform potenital interventions to increase parental readiness for HCT.

      Abstract

      Background

      Health care transition (HCT) has become increasingly important as adolescents and young adults (AYAs) with complex medical conditions now live well into adulthood but little attention has been given to parents of AYAs preparing for HCT.

      Objective

      This scoping review aimed to identify and synthesize information on parental facilitators and barriers to health care transition readiness.

      Eligibility criteria

      English-language, peer-reviewed original studies focused on the parents' experience of HCT were included. Studies were excluded if AYAs were not anticipated to be independent or if AYAs had only mental health disorders.

      Charting methods

      Parent-reported facilitators and barriers were identified in each study and then categorized to identify common themes.

      Results

      Themes related to parental facilitators included evidence of coordination between pediatric and adult levels of care, healthcare provider guidance for HCT, and parental awareness and acceptance of natural seasons of life. Themes related to parental barriers included relationship loss, loss of parental role, lack of knowledge and/or skills, and concerns related to the health care system in general.

      Conclusion

      Common facilitators and barriers were found across studies, regardless of medical diagnosis. Relationships and role change figure prominently in parents' perceptions of the HCT experience and their readiness for their AYA children to transition. These findings suggest potential areas for future research inquiry as well as potential nursing interventions designed to aid parents through HCT.

      Keywords

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      References

        • Allemang B.
        • Dimitropoulos G.
        • Samuel S.
        • Mackie A.
        • Morgan-Maver E.
        More than simply “letting go”: Stakeholder perspectives on parental roles in health care transition.
        Journal of Adolescent and Family Health. 2019; 10: 1
        • American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians-American Society of Internal Medicine
        A consensus statement on health care transition for young adults with special health care needs.
        Pediatrics. 2002; 110: 1304-1306
        • Andreoni K.A.
        • Forbes R.
        • Andreoni R.M.
        • Phillips G.
        • Stewart H.
        • Ferris M.
        Age-related kidney transplant outcomes: Health disparities amplified in adolescence.
        JAMA Internal Medicine. 2013; 173: 1524-1532
        • Annunziato R.A.
        • Emre S.
        • Shneider B.
        • Barton C.
        • Dugan C.A.
        • Shemesh E.
        Adherence and medical outcomes in pediatric liver transplant recipients who transition to adult services.
        Pediatric Transplantation. 2007; 11: 608-614
        • Balling K.
        • McCubbin M.
        Hospitalized children with chronic illness: Parental caregiveing needs and valuing parental expertise.
        Journal of Pediatric Nursing. 2001; 16: 110-119
        • Barriers to health care
        Office of Disease Prevention and Health Promotion.
        • Bashore L.
        • Bender J.
        Evaluation of the utility of a transition workbook in preparing adolescent and young adult cancer survivors for transition to adult services: A pilot study.
        Journal of Pediatric Oncology Nursing. 2016; 33: 111-118
        • Berry J.G.
        • Kusminsky M.
        • Foley S.M.
        • Hobbs N.
        • Queally J.T.
        • Bauer S.B.
        • Weitzman E.R.
        Strategic directions for transition to adulthood for patients with spina bifida.
        Journal of Pediatric Neurology. 2013; 11: 211-220
        • Betz C.L.
        • Nehring W.M.
        • Lobo M.L.
        Transition needs of parents of adolescents and emerging adults with special health care needs and disabilities.
        Journal of Family Nursing. 2015; 21: 362-412
        • Blinder M.A.
        • Vekeman F.
        • Sasan M.
        • Trahey A.
        • Paley C.
        • Dugh M.S.
        Age-related treatment patterns in sickle cell disease patients and the associated sickle cell complications and healthcare costs.
        Pediatric Blood & Cancer. 2013; 60: 828-835
        • Blum R.W.
        • Garell D.
        • Hodgman C.H.
        • Jorissen T.W.
        • Okinow N.A.
        • Orr D.P.
        • Slap G.B.
        Transition from child-centered to adult health-care systems for adolescents with chronic conditions: A position paper of the Society for Adolescent Medicine.
        Journal of Adolescent Health. 1993; 14: 570-576
        • Bratt E.L.
        • Burstrom A.
        • Hanseus K.
        • Rydberg A.
        • Berghammer M.
        Do not forget the parents—Parents’ concerns during transition to adult care for adolescents with congenital heart disease.
        Child: Care, Health and Development. 2018; 44: 278-284
        • Bronfenbrenner U.
        Toward an experimental ecology of human development.
        American Psychologist. 1977; 32: 513-531
        • Buckner L.G.
        Healthcare transition from the family perspective.
        in: Hergenroeder A.C. Wiemann C.M. Health care transition: Building a program for adolescents and young adults with chronic illness and disability. Springer International Publishing AG, Cham, Switzerland2018: 43-54
        • Burstom A.
        • Ojmyr-Joelsson M.
        • Bratt E.
        • Lundell B.
        • Nisell M.
        Adolescents with congenital heart disease and their parents: Needs before transfer to adult care.
        Journal of Cardiovascular Nursing. 2016; 31: 399-404
        • Byrnes I.Y.S.
        Healthcare transition from the AYASHCN’s perspective.
        in: Hergenroeder A.C. Wiemann C.M. Health care transition: Building a program for adolescents and young adults with chronic illness and disability. Springer International Publishing AG, Cham, Switzerland2018: 33-42
        • Chandra S.
        • Luetkemeyer S.
        • Romero R.
        • Gupta N.A.
        Growing up: Not an easy transition—Perspectives of patients and parents regarding transfer from a pediatric liver transplant center to adult care.
        International Journal of Hepatology. 2015; 2015765957
        • Clarizia N.A.
        • Chahal N.
        • Manlhiot C.
        • Kilburn J.
        • Redington A.N.
        • McCrindle B.W.
        Transition to adult health care for adolescents and young adults with congenital heart disease: Perspectives of the patient, parent, and health care provider.
        Canadian Journal of Cardiology. 2009; 25: e317-e322
        • Coyne I.
        • Malone H.
        • Chubb E.
        • While A.E.
        Transition from paediatric to adult healthcare for young people with cystic fibrosis: Parents’ information needs.
        Journal of Child Health Care. 2018; 22: 646-657
        • Escherich G.
        • Bielack S.
        • Maier S.
        • Braungart R.
        • Brummendorf T.H.
        • Freund M.
        • Dirksen U.
        Building a national framework for adolescent and young adult hematology and oncology and transition from pediatric to adult care: Report of the inaugural meeting of the “AjET” working group of the German society for pediatric oncology and hematology.
        Journal of Adolescent and Young Adult Oncology. 2017; 6: 194-199
        • Fernandes S.M.
        • O’Sullivan-Oliveira J.
        • Landzberg M.J.
        • Khairy P.
        • Melvin P.
        • Sawicki G.S.
        • Fishman L.N.
        Transitioning and transfer of adolescents and young adults with pediatric onset chronic disease: The patient and parent perspective.
        Journal of Pediatric Rehabilitative Medicine. 2014; 7: 43-51
        • Gabay G.
        • Tarabeih M.
        “A bridge over troubled water”: Nurses’ leadership in establishing young adults’ trust upon the transition to adult renal-care—A dual-perspective qualitative study.
        Journal of Pediatric Nursing. 2020; 6: 194-199
        • Gray W.N.
        • Resmini A.R.
        • Baker K.D.
        • Holbrook E.
        • Morgan P.J.
        • Ryan J.
        • Hommel K.A.
        Concerns, barriers, and recommendations to improve transition from pediatric to adult IBD care: Perspectives of patients, parents, and health professionals.
        Inflammatory Bowel Diseases. 2015; 21: 1641-1651
        • Heath G.
        • Farre A.
        • Shaw K.
        Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences.
        Patient Education and Counseling. 2017; 100: 76-92
        • Heaton J.
        • Noyes J.
        • Sloper P.
        • Shah R.
        Families’ experiences of caring for technology-dependent children: A temporal perspective.
        Health & Social Care in the Community. 2005; 13: 441-450
        • Kuhlthau K.A.
        • Delahaye J.
        • Erickson-Warfield M.
        • Shui A.
        • Crossman M.
        • van der Weerd E.
        Health care transition services for youth with autism spectrum disorders: Perspectives of caregivers.
        Pediatrics. 2016; 137: S158-S166
        • Lindsay S.
        • Fellin M.
        • Cruickshank H.
        • McPherson A.
        • Maxwell J.
        Youth and parents’ experiences of a new inter-agency transition model for spina bifida compared to youth who did not take part in the model.
        Disability and Health Journal. 2016; 9: 705-712
        • Lindsay S.
        • McAdam L.
        • Mahendiran T.
        Enablers and barriers of men with Duchenne muscular dystrophy transitioning from an adult clinic within a pediatric hospital.
        Disability and Health Journal. 2017; 10: 73-79
        • Lochridge J.
        • Wolff J.
        • Oliva M.
        • O’Sullivan-Oliveira J.
        Perceptions of solid organ transplant recipients regarding self-care management and transitioning.
        Pediatric Nursing. 2013; 39: 81-89
        • Lorenzi M.F.
        • Xie L.
        • Rogers P.C.
        • Pritchard S.
        • Goddard K.
        • McBride M.L.
        Hospital-related morbidity among childhood cancer survivors in British Columbia, Canada: Report of the childhood, adolescent, young adult cancer survivors (CAYACS) program.
        International Journal of Cancer. 2011; 28: 1624-1631
        • Magrab P.R.
        • Millar H.E.C.
        Surgeon General’s conference growing up and getting medical care: Youth with special health care needs: A summary of conference proceedings.
        Georgetown University Child Development Center, Washington, D. C1989
        • McCann L.
        • Kearney N.
        • Wengstrom Y.
        It’s just going to a new hospital . . . that’s it. Or is it? An experiential perspective on moving from pediatric to adult cancer services.
        Cancer Nursing. 2014; 37: E23-E31
        • Meleis A.I.
        Role insufficiency and role supplementation: A conceptual framework.
        Nursing Research. 1975; 24: 264-271
        • Morsa M.
        • Gagnayre R.
        • Pomey M.
        • Deccache C.
        • Lombrail P.
        Developmentally appropriate patient education during transition: A study of healthcare providers’ and parents’ perspective.
        Health Education Journal. 2020; 79: 377-389
        • Nakhla M.
        • Daneman D.
        • To T.
        • Paradis G.
        • Guttmann A.
        Transition to adult health care for youths with diabetes mellitus: Findings from a universal health care system.
        Pediatrics. 2009; 124: e1134-e1141
        • Nandakumar B.S.
        • Fardell J.E.
        • Wakefield C.E.
        • Signorelli C.
        • McLoone J.K.
        • Skeen J.
        • Cohn R.J.
        Attitudes and experiences of childhood cancer survivors transitioning from pediatric care to adult care.
        Supportive Care in Cancer. 2018; 26: 2743-2750
        • Nazareth M.
        • Hart L.
        • Ferris M.
        • Rak E.
        • Hooper S.
        • van Tilburg M.A.L.
        A parental report of youth transition readiness: The parent STARx questionnaire (STARx-P) and re-evaluation of the STARx child report.
        Journal of Pediatric Nursing. 2018; 38: 122-126
        • Nicholas D.B.
        • Pinsk M.
        • Hamiwka L.
        • Kaufman M.
        • Samuel S.
        • Molzahn A.E.
        Examining the transition from child to adult care in chronic kidney disease: An open exploratory approach.
        Nephrology Nursing Journal. 2018; 45: 553-559
        • Prior M.
        • McManus M.
        • White P.
        • Davidson L.
        Measuring the “triple aim” in transition care: A systematic review.
        Pediatrics. 2014; 134: e1648-e1661
        • Psihogios A.M.
        • Schwartz L.A.
        • Deatrick J.A.
        • Ver Hoere E.S.
        • Anderson L.M.
        • Wartman E.C.
        • Szalda D.
        Preferences for cancer survivorship care among adolescents and young adults who experienced health care transitions and their parents.
        Journal of Cancer Survivorship. 2019; 13: 620-631
        • Quinn C.T.
        • Rogers Z.R.
        • McCavit T.L.
        • Buchanan G.R.
        Improved survival of children and adolescents with sickle cell disease.
        Blood. 2010; 115: 3447-3452
        • Schwartz L.A.
        • Brumley L.D.
        • Tuchman L.K.
        • Barakat L.P.
        • Hobbie W.L.
        • Ginsberg J.P.
        • Deatrick J.A.
        Stakeholder validation of a model of readiness for transition to adult care.
        JAMA Pediatrics. 2013; 167: 939-946
        • Smith M.A.
        • Reaman G.H.
        Remaining challenges in childhood cancer and newer targeted therapies.
        Pediatric Clinics of North America. 2015; 62: 301-312
        • van Staa A.L.
        • Jedeloo S.
        • van Meeteren J.
        • Latour J.M.
        Crossing the transition chasm: Experiences and recommendations for improving transitional care of young adults, parents and providers.
        Child: Care, Health and Development. 2011; 37: 821-832
        • Suris J.C.
        • Larbre J.
        • Hofer M.
        • Hauschild M.
        • Barrense-Dias Y.
        • Berchtold A.
        • Akre C.
        Transition from paediatric to adult care: What makes it easier for parents?.
        Child: Care, Health and Development. 2017; 43: 152-155
        • Turner R.H.
        Role theory.
        in: Turner J.H. Handbook of sociological theory. Klewer Academic/Plenum Publishers, 2001: 233-254
        • White P.
        • Schmidt A.
        • Shorr J.
        • Ilango S.
        • Beck D.
        • McManus M.
        Six Core Elements of Health Care TransitionTM 3.0. Washington, DC: Got Transition.
        The National Alliance to Advance Health, 2020
        • White P.H.
        • McManus M.A.
        Introduction: Historical perspectives, current priorities, and healthcare transition processes, evidence, and measurement.
        in: Hergenroeder A.C. Wiemann C.M. Health care transition: Building a program for adolescents and young adults with chronic illness and disability, (pp. 3–11). Springer International Publishing AG, 2018
        • Wright J.
        • Elwell L.
        • McDonagh J.E.
        • Kelly D.A.
        • Wray J.
        Parents in transition: Experiences of parents of young people with a liver transplant transferring to adult services.
        Pediatric Transplantation. 2017; 21e12760