Adolescence; Chronic disease; Transition; Self Care; Patient Education as Topic; Transition to Adult Care; Qualitative Research
Abstract :
[en] [en] OBJECTIVE: To give a comprehensive overview of the factors that influence the transition from pediatric services to adult care, and to conceptualize a relevant education program.
METHOD: An evaluation grid was used to analyze the literature and classify factors depending on whether they were related to the patients, to the health care organization, to health care personnel, to the interaction between medical staff and patient, or to the illness and its treatment.
RESULTS: We based our analysis on a selection of 20 publications. The following factors were identified and classified in an integrative framework: self-management skills, trust in adult care, the feeling of self-efficacy, social support, the patient's gender and social position, the trust between child carers and adult carers, interdisciplinary cooperation, and the medical staff's consideration of the patient's projects.
CONCLUSIONS AND PRACTICE IMPLICATIONS: The current analysis makes it possible to formulate educational aims and to design a way of integrating them to a transition plan. However, the collected studies mainly focus on knowledge of the illness, on treatment, and on the health care system. Psychosocial dimensions at play at the time of the transition - such as identity development - are not sufficiently explored in the research.
Disciplines :
Social & behavioral sciences, psychology: Multidisciplinary, general & others
Author, co-author :
Morsa, Maxime ; Université de Liège - ULiège > Département de Psychologie > Recherche qualitative ; Laboratory of Education and Health Practices (EA3412), University Paris 13, Bobigny, France. Electronic address: maximemorsa@hotmail.com
Gagnayre, Rémi; Laboratory of Education and Health Practices (EA3412), University Paris 13, Bobigny, France. Electronic address: remi.gagnayre@univ-paris13.fr
Deccache, Carole; Laboratory of Education and Health Practices (EA3412), University Paris 13, Bobigny, France. Electronic address: carole.deccache@gmail.com
Lombrail, Pierre; Laboratory of Education and Health Practices (EA3412), University Paris 13, Bobigny, France, Department of Public Health, Paris Seine St-Denis hospital, AP-HP, France. Electronic address: pierre.lombrail@univ-paris13.fr
Language :
English
Title :
Factors influencing the transition from pediatric to adult care: A scoping review of the literature to conceptualize a relevant education program.
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Bibliography
Michaud, P.A., Suris, J.C., Viner, R., The Adolescent with a Chronic Condition. Epidemiology, Developmental Issues and Health Care Provision. WHO Discussion Papers on Adolescence. 2007, WHO, Geneva.
Crowley, R., Wolfe, I., Lock, K., McKee, M., Improving the transition between paediatric and adult healthcare: a systematic review. Arch. Dis. Child. 96:6 (2011), 548–553, 10.1136/adc.2010.202473.
Betz, C.L., Redcay, G., Tan, S., Self-reported health care self-care needs of transition-age youth: a pilot study. Compr. Pediatr. Nurs. 26 (2003), 159–181, 10.1080/01460860390223880.
Sawicki, G.S., Kelemen, S., Weitzman, E.R., Ready, set, stop: mismatch between self-care beliefs, transition readiness skills, and transition planning among adolescents, young adults, and parents. Clin. Pediatr. (Phila.) 53:11 (2014), 1062–1068, 10.1177/0009922814541169.
Westwood, A., Langerak, N., Fieggen, G., Transition from child- to adult-orientated care for children with long-term health conditions: a process, not an event. S. Afr. Med. J. 104:4 (2014), 310–313.
Dovey-Pearce, G., Christie, D., Transition in diabetes: young people move on-we should too. Pediatr. Child Health 23 (2013), 174–179, 10.1016/j.paed.2012.12.009.
Watson, A.R., Non-compliance and transfer from paediatric to adult transplant unit. Pediatr. Nephrol. 14:6 (2000), 469–472.
Yeung, E., Kay, J., Roosevelt, G.E., Brandon, M., Yetman, A.T., Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int. J. Cardiol. 125 (2008), 62–65.
Pacaud, D., Yale, J.F., Exploring a black hole: transition from paediatric to adult care services for youth with diabetes. Paediatr. Child Health 10 (2005), 31–34.
Ferro, M.A., Adolescents and young adults with physical illness: a comparative study of psychological distress. Acta Paediatr. 103 (2013), 32–37.
Tuchman, L.K., Schwartz, L.A., Sawicki, G.S., Britto, M.T., Cystic fibrosis and transition to adult medical care. Pediatrics 125:3 (2010), 566–573, 10.1542/peds.2009-2791.
McDonagh, J.E., Transition of care: how should we do it?. Paediatr. Child Health 17:12 (2007), 480–484.
Meleis, A.I., Transitions Theory: Middle-Range and Situation-Specific Theories in Nursing Research and Practice. 2010, Springer, New York.
WHO, http://www.who.int/maternal_child_adolescent/topics/adolescence/dev/fr/, [Accessed 7 April 2017].
OMS [WHO]. Education thérapeutique du patient-professionnels de soins dans le domaine de la prévention des maladies chroniques. Recommandations d'un groupe de travail de l'OMS, [Therapeutic education patient – the healthcare professional in the field of chronic disease prevention Recommendations of a WHO working group]. Bureau régional pour l'Europe (Copenhague) [Regional Office for Europe (Copenhagen)]. 1998. 88p.
Schmidt, S., Herrmann-Garitz, C., Bomba, F., Thyen, U., A multicenter prospective quasi-experimental study on the impact of a transition-oriented generic patient education program on health service participation and quality of life in adolescents and young adults. Patient Educ. Couns. 99:3 (2016), 421–428, 10.1016/j.pec.2015.10.024.
Rosen, D.S., Blum, R.W., Britto, M., Sawyer, S.M., Siegel, D.M., Transition to adult health care for adolescents and young adults with chronic conditions. J. Adolesc. Health 33:4 (2003), 309–311, 10.1016/S1054-139X(03)00208-8.
Deccache, A., Teaching, training or educating patients? Influence of contexts and models of education and care on practice in patient education. Patient Educ. Couns. 26 (1995), 119–129.
Fegran, L., Hall, E.O.C., Uhrenfeldt, L., Aagaard, H., Ludvigsen, M.S., Adolescents’ and young adults’ transition experiences when transferring from paediatric to adult care: a qualitative metasynthesis. Int. J. Nurs. Stud. 51:1 (2014), 123–135, 10.1016/j.ijnurstu.2013.02.001.
Pai, A.L., Ostendorf, H.M., Treatment adherence in adolescents and young adults affected by chronic illness during the health care Transition from pediatric to adult health care: a literature review. Child. Health Care 40:1 (2011), 16–33.
Lugasi, T., Achille, M., Stevenson, M., Patients'perspective on factors that facilitate transition from child-centered to adult-centered health care: a theory-integrated metasummary of quantitative and qualitative studies. J. Adolesc. Health 48:5 (2011), 429–440, 10.1016/j.jadohealth.2010.10.016.
Daudt, H.M.L., van Mossel, C., Scott, S., Enhancing the scoping study methodology: a large, inter-professional team's experience with Arksey and O'Malley's framework. BMC Med. Res. Methodol., 13, 2013, 48, 10.1186/1471-2288-13-48.
Petticrew, M., Roberts, H., Systematic Reviews in Social Sciences: A Practical Guide. 2005, Wiley Blackwell.
Arksey, H., O'Malley, L., Scoping studies: towards a methodological framework. Int. J. Soc. Res. Method 8 (2005), 19–31.
Moher, D., Liberati, A., Tetzlaff, J., Altman, D.G., Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann. Intern. Med. 151 (2009), 264–269, 10.1371/journal.pmed.1000097.
Burns, P.B., Rohrich, R.J., Chung, K.C., The levels of evidence and their role in evidence-based medicine. Plast. Reconstr. Surg. 128:1 (2011), 305–310, 10.1097/PRS.0b013e318219c171.
Porter, J.S., Graff, J.C., Lopez, A.D., Hankins, J.S., Transition from pediatric to adult care in sickle cell disease: perspectives on the family role. J. Pediatr. Nurs. 29:2 (2014), 158–167, 10.1016/j.pedn.2013.10.002.
Rutishauser, C., Sawyer, S.M., Ambresin, A.-E., Transition of young people with chronic conditions: a cross-sectional study of patient perceptions before and after transfer from pediatric to adult health care. Eur. J. Pediatr. 173:8 (2014), 1067–1074, 10.1007/s00431-014-2291-9.
Fair, C.D., Sullivan, K., Dizney, R., Stackpole, A., It's like losing a part of my family: transition expectations of adolescents living with perinatally acquired HIV and their guardians. Aids Patient Care STDs(June), 2012, 10.1089/apc.2012.0041 12061113155200.
Wong, L.H.L., Chan, F.W.K., Wong, F.Y.Y., et al. Transition care for adolescents and families with chronic illnesses. J. Adolesc. Health 47:6 (2010), 540–546, 10.1016/j.jadohealth.2010.04.002.
van der Toorn, M., Cobussen-Boekhorst, H., Kwak, K., et al. Needs of children with a chronic bladder in preparation for transfer to adult care. J. Pediatr. Urol. 9:4 (2013), 509–515, 10.1016/j.jpurol.2012.05.007.
Godbout, A., Tejedor, I., Malivoir, S., Polak, M., Touraine, P., Transition from pediatric to adult healthcare: assessment of specific needs of patients with chronic endocrine conditions. Horm. Res. Paediatr. 78:4 (2012), 247–255, 10.1159/000343818.
Fernandes, S.M., O'Sullivan-Oliveira, J., Landzberg, M.J., et al. Transition and transfer of adolescents and young adults with pediatric onset chronic disease: the patient and parent perspective. J. Pediatr. Rehabil. Med. 7:1 (2014), 43–51, 10.3233/PRM-140269.
Gibson-Scipio, W., Gourdin, D., Krouse, H.J., Asthma self-management goals, beliefs and behaviors of urban african american adolescents prior to transitioning to adult health care. J. Pediatr. Nurs. 30:6 (2015), e53–e61, 10.1016/j.pedn.2015.06.012.
Felsenstein, S., Reiff, A.O., Ramanathan, A., Transition of care and health-Related outcomes in pediatric-onset systemic lupus erythematosus. Arthritis Care Res. (Hoboken) 67:11 (2015), 1521–1528, 10.1002/acr.22611.
O'Sullivan-Oliveira, J., Fernandes, S.M., Borges, L.F., Fishman, L.N., Transition of pediatric patients to adult care: an analysis of provider perceptions across discipline and role. Pediatr. Nurs. 40:3 (2014), 113–120 142.
Javalkar, K., Johnson, M., Kshirsagar, A.V., Ocegueda, S., Detwiler, R.K., Ferris, M., Ecological factors predict transition readiness/self-management in youth with chronic conditions. J. Adolesc. Health 58:1 (2016), 40–46, 10.1016/j.jadohealth.2015.09.013.
van Staa, A., Sattoe, J.N.T., Young adults’ experiences and satisfaction with the transfer of care. J. Adolesc. Health 55:6 (2014), 796–803, 10.1016/j.jadohealth.2014.06.008.
Ishizaki, Y., Maru, M., Higashino, H., 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., 6, 2012, 8, 10.1186/1751-0759-6-8.
N. Heather Davies, Transition from pediatric to adult health care for young adults with neurological disorders: Parental perspectives. Board of directors, committee chairpersons and associated organization representatives/Conseil d'administration, responsables des comités et représentants des groupes associés 2011–2012, 32.
Huang, J.S., Gottschalk, M., Pian, M., Dillon, L., Barajas, D., Bartholomew, L.K., Transition to adult care: systematic assessment of adolescents with chronic illnesses and their medical teams. J. Pediatr., 159(6), 2011, 10.1016/j.jpeds.2011.05.038 994–998.e2.
Javalkar, K., Fenton, N., Cohen, S., Ferris, M., Socioecologic factors as predictors of readiness for self-management and transition, medication adherence, and health care utilization among adolescents and young adults with chronic kidney disease. Prev. Chronic Dis., 11, 2014, 140072, 10.5888/pcd11.140072.
Lulu, S., Julian, L., Shapiro, E., Hudson, K., Waubant, E., Treatment adherence and transitioning youth in pediatric multiple sclerosis. Multiple Scler. Relat. Disord. 3:6 (2014), 689–695, 10.1016/j.msard.2014.09.088.
Gilliam, P.P., Ellen, J.M., Leonard, L., Kinsman, S., Jevitt, C.M., Straub, D.M., Transition of adolescents with HIV to adult care: characteristics and current practices of the adolescent trials network for HIV/AIDS interventions. J. Assoc. Nurses AIDS Care 22:4 (2011), 283–294, 10.1016/j.jana.2010.04.003.
Suris, J.-C., Akre, C., Key elements for, and indicators of, a successful transition: an international Delphi study. J. Adolesc. Health 56:6 (2015), 612–618, 10.1016/j.jadohealth.2015.02.007.
Schwartz, L.A., Brumley, L.D., Tuchman, L.K., Barakat, L.P., Hobbie, W.L., Ginsberg, J.P., Daniel, L.C., Kazak, A.E., Bevans, K., Deatrick, J.A., Stakeholder validation of a model of readiness for transition to adult care. JAMA Pediatr. 167:10 (2013), 939–946, 10.1001/jamapediatrics.2013.2223.
Sattoe, J.N.T., Bal, M.I., Roelofs, P.D.D.M., Bal, R., Miedema, H.S., van Staa, A., Self-management interventions for young people with chronic conditions: a systematic overview. Patient Educ. Couns. 98:6 (2015), 704–715, 10.1016/j.pec.2015.03.004.
Luyckx, K., Seiffge-Krenke, I., Schwartz, S.J., et al. Identity development, coping, and adjustment in emerging adults with a chronic illness: the sample case of type 1 diabetes. J. Adolesc. Health 43:5 (2008), 451–458, 10.1016/j.jadohealth.2008.04.005.
Luyckx, K., Schwartz, S.J., Goossens, L., Beyers, W., Missotten, L., Processes of personal identity formation and evaluation. Schwartz, S.J., Luyckx, K., Vignoles, V.L., (eds.) Handbook of Identity Theory and Research, 2011, Springer, New York, 77–98.
Park, C.L., Bharadwaj, A.K., Blank, T.O., Illness centrality, disclosure, and well-being in younger and middle-aged adult cancer survivors: illness centrality in cancer survivors. Br. J. Health Psychol. 16:4 (2011), 880–889, 10.1111/j.2044-8287.2011.02024. x.
Helgeson, V.S., Novak, S.A., Illness centrality and well-being among male and female early adolescents with diabetes. J. Pediatr. Psychol. 32:3 (2007), 260–272, 10.1093/jpepsy/jsl018.
Tilden, B., Charman, D., Sharples, J., Fosbury, J., Identity and adherence in a diabetes patient: transformations in psychotherapy. Qual. Health Res. 15 (2005), 312–324, 10.1177/1049732304272965.
Adams, S., Pill, R., Jones, A., Medication, Chronic illness and identity: the perspective of people with asthma. Soc. Sci. Med. 45:2 (1997), 189–201.
Court, J.M., Cameron, F.J., Berg-Kelly, K., Swift PGF. ISPAD clinical practice consensus guidelines 2006–2007. diabetes in adolescence. Pediatr. Diabetes 9 (2008), 255–262, 10.1111/j.1399-5448.2008.00409. x.
Williams, G.C., Frankel, R., Campbell, T.L., Deci, E.L., Research on relationship-centered care and health-care outcomes from the Rochester biopsychosocial program: a self-determination theory integration. Fam. Syst. Health 18:1 (2000), 79–90, 10.1037/h0091854.
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