The Development of Self-Management in Young People with Chronic Conditions: A Transitional Process

Sattoe, Jane N. T.; Staa, AnneLoes van

doi:10.1007/978-3-030-64293-8_3

Cited by 4 publications

(3 citation statements)

References 61 publications

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“…Parents of children with a chronic illness have an important and significant role when it comes to their child's daily care and treatment. During adolescence, a gradual shift in treatment responsibilities from parents to the adolescent with a chronic illness is expected [1][2][3][4].…”

Section: Background and Rationale {6a}mentioning

confidence: 99%

A comprehensive transfer program from pediatrics to adult care for parents of adolescents with chronic illness (ParTNerSTEPs): study protocol for a randomized controlled trial

Thomsen

Boisen

Hanghøj

et al. 2022

Trials

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Background Previous research shows that adolescents with a chronic illness have more successful transfers to adult care if their parents are involved during the transition. However, there is a lack of structured and evaluated transfer programs for parents. Our aim will be to test a comprehensive transfer program for parents of adolescents with chronic illness during the transfer from pediatric to adult care and to evaluate the program’s effectiveness, acceptability, and costs. Methods The overall design for this protocol will be a randomized controlled trial. A total of 62 dyads consisting of an adolescent (age 16.5–17.5) and at least one parent will be recruited from one of four pediatric outpatient clinics (nephrology, hepatology, neurology, or rheumatology) at Copenhagen University Hospital - Rigshospitalet, Denmark. The dyads will be randomized to receive the transfer program in addition to usual care or to receive usual care only. The program includes an informative website, bi-annual online educational events, and transfer consultations across pediatric and adult care. Outcome measures will include transition readiness, allocation of responsibility, parental uncertainty level, and transfer satisfaction. Data will be collected from participants at baseline, every 6 months until transfer, at transfer, and 3 months after transfer. The parents’ acceptance of and satisfaction with the program will be explored through semi-structured interviews. Cost, barriers, and facilitators affecting future implementation will be identified in interviews with health care professionals, using the Normalization Process Theory as a framework for the process analysis. Discussion To our knowledge, this transfer program is one of the first interventions for parents of adolescents with a chronic illness during their child’s transfer to adult care. Our trial will include parental and adolescent measures allowing us to examine whether a transfer program for parents will improve transfer to adult care for both parents and adolescents. We believe that results from our trial will be helpful in forming recommendations to ensure better involvement of parents in transitional care. Trial registration ClinicalTrials.gov NCT04969328. Retrospectively registered on 20 July 2021.

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Section: Background and Rationale {6a}mentioning

confidence: 99%

A comprehensive transfer program from pediatrics to adult care for parents of adolescents with chronic illness (ParTNerSTEPs): study protocol for a randomized controlled trial

Thomsen

Boisen

Hanghøj

et al. 2022

Trials

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“…The need to improve transitional care for young people (YP) with chronic conditions has been repeatedly emphasized in scientific literature and professional guidelines (Bert et al, 2020). The transition from childhood to adulthood and the parallel transfer from paediatric to adult care come with profound challenges for YP (Campbell et al, 2016; Crowley et al, 2011; Sattoe, van Staa, & Hilberink, 2021; Varty & Popejoy, 2020). While guidelines offer advice to health care professionals (HCP) about how to improve transitional care (Got Transition, n.d.; National Institute for Health Care Excellence, n.d.; Mazur et al, 2017; Surís & Akré, 2015; van Staa et al, 2020), implementation takes time and often lacks the voices of YP (Betz et al, 2013, 2021; Coyne et al, 2019).…”

Section: Introductionmentioning

confidence: 99%

Mirror meetings as a tool to enhance professionals' awareness of the lived experiences of young people with inflammatory bowel disease

Sattoe,

van Heijningen‐Tousain,

van Staa

2023

Child

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During mirror meetings, professionals were confronted with the experiences of young people (YP) with inflammatory bowel disease to encourage them to improve their transitional care arrangements. The mirror meetings were held under guidance of an independent moderator. YP conversed about their transition experiences, while health care providers listened without interfering. Meetings were audio‐recorded and summarized. Qualitative thematic analysis was conducted. Thirty‐two YP participated in six mirror meetings with 26 professionals from paediatric and adult care. Professionals received concrete suggestions for improving their transitional care arrangements. These were about holistic care, tailored to individual needs and preferences, attention for mental health and the role of parents and peers. Advice given by YP matched transitional care guidelines' recommendations. Mirror meetings are a powerful tool to enhance professionals' awareness of YP's needs.

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“…Empowerment is a transactional and developmental process that may be essential to facilitating autonomy. 6,8,9 Autonomy results from being empowered and pertains to the capacity of independent decision-making and initiative in which adolescents gradually separate from parental and other influences, and build the skills required for adulthood. In addition, the end stages of the transition to selfmanagement of T1DM can occur in parallel with the transfer from pediatric care services to adult care services.…”

mentioning

confidence: 99%

Adolescents’ Experiences of Transition to Self-Management of Type 1 Diabetes: Systematic Review and Future Directions

Leocadio,

Kelleher,

Fernández

et al. 2023

The Science of Diabetes Self-Management and Care

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Purpose: The purpose of this systematic literature review was to explore studies that report the experiences of adolescents, their families, and health care professionals of adolescents’ transition to self-management of type 1 diabetes (T1DM). Methods: SocINDEX, PsycInfo, APA PsycArticles, and MEDLINE electronic databases were searched. Studies reporting on experiences of transition to self-management of T1DM for adolescents, their parents, siblings, and health care professionals published between January 2010 amd December 2021 were included. The Mixed Methods Appraisal Tool guided trustworthiness and relevance of selected studies. Results: A total of 29 studies met the inclusion criteria. Findings indicate that adolescents’ experiences of transitioning to self-management of T1DM are interconnected with the supports provided by others (eg, family, teachers, friends). Considering interdependence and collective lived experiences is essential to developing effective and personalized family, peer, and social interventions to facilitate transition and to avoid negative outcomes in later life. The renegotiation of roles within the network of supports that impact adolescents’ transition and adolescents’ self-negotiation have been neglected. Conclusion: Transition to self-management of T1DM is a dynamic and iterative process comprising of continuous shifts between interdependence and independence, making it challenging for all involved. A number of research gaps and avenues for future research are outlined.

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The Development of Self-Management in Young People with Chronic Conditions: A Transitional Process

Cited by 4 publications

References 61 publications

A comprehensive transfer program from pediatrics to adult care for parents of adolescents with chronic illness (ParTNerSTEPs): study protocol for a randomized controlled trial

A comprehensive transfer program from pediatrics to adult care for parents of adolescents with chronic illness (ParTNerSTEPs): study protocol for a randomized controlled trial

Mirror meetings as a tool to enhance professionals' awareness of the lived experiences of young people with inflammatory bowel disease

Adolescents’ Experiences of Transition to Self-Management of Type 1 Diabetes: Systematic Review and Future Directions

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