Markus Saarijärvi1,2, Lars Wallin3,4, Philip Moons3,5,6, Hanna Gyllensten3,7, Ewa-Lena Bratt3,8. 1. Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden. markus.saarijarvi@gu.se. 2. Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium. markus.saarijarvi@gu.se. 3. Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden. 4. School of Education, Health and Social Studies, Dalarna University, Falun, Sweden. 5. Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium. 6. Department of Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa. 7. University of Gothenburg Centre for Person-Centred Care (GPCC), Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden. 8. Department of Pediatric Cardiology, The Queen Silvia Children's Hospital, Gothenburg, Sweden.
Abstract
BACKGROUND: During the past decade there has been some evaluation of transition programmes for adolescents with chronic conditions. However, this has rarely involved process evaluations focusing on mechanisms leading to outcomes, thus hampering implementation of these complex interventions. Our aim was to (I) describe adolescents' and parents' experiences of participating in a person-centred transition programme aiming to empower them in transition to adulthood and (II) explore the mechanisms of impact. METHODS: A qualitative process evaluation was performed, embedded in a randomized controlled trial evaluating the effectiveness of a transition programme for adolescents with congenital heart disease in Sweden. A purposive sample of 14 adolescents and 12 parents randomized to the intervention group were interviewed after participation in the programme. Data were analysed deductively and inductively in NVivo v12. RESULTS: Experiences of participation in the transition programme were generally positive. Meeting a transition coordinator trained in person-centred care and adolescent health and embarking on an educational process based on the adolescents' prerequisites in combination with peer support were considered key change mechanisms. However, support to parents were not sufficient for some participants, resulting in ambivalence about changing roles and the unmet needs of parents who required additional support. CONCLUSIONS: Participants experienced increased empowerment in several dimensions of this construct, thus demonstrating that the transition programme was largely implemented as intended and the evidence-based behaviour-change techniques used proved effective in reaching the outcome. These findings can inform future implementation of transition programmes and illuminate challenges associated with delivering a complex intervention for adolescents with chronic conditions.
RCT Entities:
BACKGROUND: During the past decade there has been some evaluation of transition programmes for adolescents with chronic conditions. However, this has rarely involved process evaluations focusing on mechanisms leading to outcomes, thus hampering implementation of these complex interventions. Our aim was to (I) describe adolescents' and parents' experiences of participating in a person-centred transition programme aiming to empower them in transition to adulthood and (II) explore the mechanisms of impact. METHODS: A qualitative process evaluation was performed, embedded in a randomized controlled trial evaluating the effectiveness of a transition programme for adolescents with congenital heart disease in Sweden. A purposive sample of 14 adolescents and 12 parents randomized to the intervention group were interviewed after participation in the programme. Data were analysed deductively and inductively in NVivo v12. RESULTS: Experiences of participation in the transition programme were generally positive. Meeting a transition coordinator trained in person-centred care and adolescent health and embarking on an educational process based on the adolescents' prerequisites in combination with peer support were considered key change mechanisms. However, support to parents were not sufficient for some participants, resulting in ambivalence about changing roles and the unmet needs of parents who required additional support. CONCLUSIONS:Participants experienced increased empowerment in several dimensions of this construct, thus demonstrating that the transition programme was largely implemented as intended and the evidence-based behaviour-change techniques used proved effective in reaching the outcome. These findings can inform future implementation of transition programmes and illuminate challenges associated with delivering a complex intervention for adolescents with chronic conditions.
Entities:
Keywords:
Adolescent; Chronic disease; Parent; Process evaluation; Qualitative research; Randomized controlled trial; Transition of care
Authors: Craig Sable; Elyse Foster; Karen Uzark; Katherine Bjornsen; Mary M Canobbio; Heidi M Connolly; Thomas P Graham; Michelle Z Gurvitz; Adrienne Kovacs; Alison K Meadows; Graham J Reid; John G Reiss; Kenneth N Rosenbaum; Paul J Sagerman; Arwa Saidi; Rhonda Schonberg; Sangeeta Shah; Elizabeth Tong; Roberta G Williams Journal: Circulation Date: 2011-02-28 Impact factor: 29.690
Authors: Markus Saarijärvi; Lars Wallin; Philip Moons; Hanna Gyllensten; Ewa-Lena Bratt Journal: BMC Health Serv Res Date: 2022-02-05 Impact factor: 2.655