Chronic conditions; paediatric transition; patient education; young people; Qualitative Research; Focus group; Intervention Research
Abstract :
[en] Introduction: Patient education is recommended to improve the transition from paediatric to adult care for young people with chronic conditions. But a consensus has not been reached regarding a particular model. This study aimed to understand how to prepare for the implementation of a Developmentally Appropriate Patient Education during Transition (DAPET), which would revolve around the young person’s psychosocial development. Method: Three focus groups were organised with healthcare providers and two focus groups took place with the parents of young people with chronic conditions. We used activity theory to explore practices and to identify obstacles to the implementation of DAPET, as well as to recognise which resources might be available to implement DAPET. Results: Healthcare providers agreed on the need to engage in an educational approach centred on the psychosocial development of young people during transition. However, study findings highlight the following obstacles to doing so: a lack of competencies in adolescent and young adult medicine and a lack of available resources to meet these goals. Furthermore, parents wanted to redefine their role in the transition process and to allow their children to develop self-management skills. Conclusion: Healthcare providers and parents considered the implementation of DAPET to be acceptable and even advisable. However, the programme’s feasibility was questioned due to perceived shortfalls in the hospital system as it currently stands and the ways in which an educational approach would be applied. An environment that facilitates healthcare providers’ educational initiatives and encourages the participation of parents is required.
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), Bobigny, France
Gagnayre, Rémi; Laboratory of Education and Health Practices (EA3412), Bobigny, France
Pomey, Marie-Pascale; Department of Health Management, Evaluation and Policy, School of Public Health, University of Montreal, Canada
Deccache, Carole; Laboratory of Education and Health Practices (EA3412), Bobigny, France
Lombrail, Pierre; Laboratory of Education and Health Practices (EA3412), Bobigny, France ; Department of Public Health, Paris Seine St-Denis Hospital, AP-HP, Paris, France
Language :
English
Title :
Developmentally appropriate patient education during transition: A study of healthcare providers’ and parents’ perspective
Adams JS, Woods ER, (2016) Redesign of chronic illness care in children and adolescents: Evidence for the chronic care model. Current Opinion in Pediatrics 28(4): 428–433.
Akre C, Suris J-C, Belot A, et al. (2018) Building a transitional care checklist in rheumatology: A Delphi-like survey. Joint Bone Spine 85(4): 435–440.
Blum RWM, Garell D, Hodgman CH, et al. (1993) Transition from child-centered to adult health-care systems for adolescents with chronic conditions. Journal of Adolescent Health 14(7): 570–576.
Britto MT, Vockell A-LB, Munafo JK, et al. (2014) Improving outcomes for underserved adolescents with asthma. Pediatrics 133(2): e418–e427.
Campbell F, Biggs K, Aldiss SK, et al. (2016) Transition of care for adolescents from paediatric services to adult health services. The Cochrane Database of Systematic Reviews 2016: CD009794.
Clemente D, Leon L, Foster H, et al. (2017) Transitional care for rheumatic conditions in Europe: Current clinical practice and available resources. Pediatric Rheumatology 15(1): 49.
Engeström Y, Miettinen R, Punamaki R-L, (eds) (1999) Perspectives on Activity Theory. Cambridge: Cambridge University Press.
Falzon P, (2005) Ergonomics, knowledge development and the design of enabling environments. In: Proceedings of the humanizing work and work environment (HWWE’2005) conference, Guwahati, India, 10–12 December, Conservatoire national des arts et métiers, Paris, France, pp. 1–8.
Farre A, Wood V, Rapley T, et al. (2015) Developmentally appropriate healthcare for young people: A scoping study. Archives of Disease in Childhood 100(2): 144–151.
Ferro MA, Boyle MH, (2013) Self-concept among youth with a chronic illness: A meta-analytic review. Health Psychology 32(8): 839–848.
Fonte D, Colson S, Côté J, et al. (2019) Representations and experiences of well-being among diabetic adolescents: Relational, normative, and identity tensions in diabetes self-management. Journal of Health Psychology 24(14): 1976–1992.
Gedera DSP, Williams PJ, (2016) Activity Theory in Education: Research and Practice. Available at: https://www.sensepublishers.com/media/2631-activity-theory-in-education.pdf (accessed 20 September 2019).
Gopalan G, Lee SJ, Harris R, et al. (2017) Utilization of peers in services for youth with emotional and behavioral challenges: A scoping review. Journal of Adolescence 55: 88–115.
Green J, Thorogood N, (2014) Qualitative Methods for Health Research (Introducing Qualitative Methods). 3rd ed. Los Angeles, CA: SAGE.
Heath G, Farre A, Shaw K, (2017) Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences. Patient Education and Counseling 100(1): 76–92.
Johnson R, Edwards R, Rivers A, et al. (2020) Evaluating literacy levels of patient education materials for a sickle cell transition group education programme. Health Education Journal 79(3): 253–265.
Klodnick VV, Sabella K, Brenner CJ, et al. (2015) Perspectives of young emerging adults with serious mental health conditions on vocational peer mentors. Journal of Emotional and Behavioral Disorders 23(4): 226–237.
Litt IF, (2003) Focusing on focus groups. Journal of Adolescent Health 32(5): 329–330.
McDonagh JE, (2007) Transition of care: How should we do it? Paediatrics and Child Health 17(12): 480–484.
McDonagh JE, Farre A, Gleeson H, et al. (2018) Making healthcare work for young people. Archives of Disease in Childhood 103(6): 623–623.
McDonagh JE, Minnaar G, Kelly K, et al. (2006) Unmet education and training needs in adolescent health of health professionals in a UK children’s hospital. Acta Paediatrica 95(6): 715–719.
McManus MA, Pollack LR, Cooley WC, et al. (2013) Current status of transition preparation among youth with special needs in the United States. Pediatrics 131(6): 1090–1097.
Modi AC, Pai AL, Hommel KA, et al. (2012) Pediatric self-management: A framework for research, practice, and policy. Pediatrics 129(2): e473–e485.
Morsa M, Gagnayre R, Deccache C, et al. (2017) Factors influencing the transition from pediatric to adult care: A scoping review of the literature to conceptualize a relevant education program. Patient Education and Counseling 100(10): 1796–1806.
Morsa M, Lombrail P, Boudailliez B, et al. (2018) A qualitative study on the educational needs of young people with chronic conditions transitioning from pediatric to adult care. Patient Preference and Adherence 2018(12): 2649–2660.
Nutt DJ, Fone K, Asherson P, et al. (2007) Evidence-based guidelines for management of attention-deficit/hyperactivity disorder in adolescents in transition to adult services and in adults: recommendations from the British Association for Psychopharmacology. Journal of Psychopharmacology 21(1): 10–41.
Payne D, (2013) Meeting the needs of young people in hospital. Archives of Disease in Childhood 98(12): 930–932.
Pomey M-P, Hihat H, Khalifa M, et al. (2015) Patient partnership in quality improvement of healthcare services: Patients’ inputs and challenges faced. Patient Experience Journal 2(1): 29–42.
Rivard M-C, Deslandes R, (2012) Engagement of educators and parents in students’ health education in a low socioeconomic school in Quebec: A case study. Health Education Journal 72(5): 537–544.
Sattoe JNT, Bal MI, Roelofs PD, et al. (2015) Self-management interventions for young people with chronic conditions: A systematic overview. Patient Education and Counseling 98(6): 704–715.
Sawyer SM, Afifi RA, Bearinger LH, et al. (2012) Adolescence: A foundation for future health. The Lancet 379(9826): 1630–1640.
White PH, Cooley WC, Transitions Clinical Report Authoring Group, et al. (2018) Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 142(5): e20182587.
Williams RG, Iverson EF, (2018) Developing transition policies, procedures, or guidelines. In: Hergenroeder AC, Wiemann CM, (eds) Health Care Transition. New York: Springer, pp. 107–112.
Wong LHL, Chan FWK, Wong FYY, et al. (2010) Transition care for adolescents and families with chronic illnesses. Journal of Adolescent Health 47(6): 540–546.
World Health Organization (WHO) (2001) The Second Decade: Improving Adolescent Health and Development. Available at: https://www.who.int/maternal_child_adolescent/documents/frh_adh_98_18/en/ (accessed 4 April 2019).
World Health Organization (WHO) (2003) Skills for Health: Skills-Based Health Education Including Life Skills: An Important Component of a Child-Friendly/Health-Promoting School. Geneva, Switzerland: World Health Organization.
Wright RJ, Chapman S, Cheer K, et al. (2015) Training needs in adolescent and young adult health and transition in UK paediatric and adult higher specialist trainees in endocrinology and diabetes. The British Journal of Diabetes 15(4): 159–165.
Zarotti N, Simpson J, Fletcher I, (2019) ‘I have a feeling I can’t speak to anybody’: A thematic analysis of communication perspectives in people with Huntington’s disease. Chronic Illness 15(1): 61–73.