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 5 publications

(11 citation statements)

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“…In the last decade, research has found that parents can be a significant resource during adolescents' transition (Colver et al, 2018;Nightingale et al, 2023). Studies have found that adolescents need their parents' support to advocate for treatment, navigate the adult healthcare system and in medical decision making well into their twenties (Lerch & Thrane, 2019;Sattoe et al, 2021) and that parental monitoring is associated with improved adolescent health (Sattoe et al, 2021). However, studies…”

Section: Backg Rou N Dmentioning

confidence: 99%

“…However, previous research has found an association between parental involvement and successful transitions, and thus highlighted the importance of incorporating parents in the transitional phase (Colver et al, 2018;Sattoe et al, 2021). For this reason, we developed a comprehensive nurse-led transfer program for parents of adolescents with chronic illness (Parents in Transition-a Nurse-led Support and Transfer Educational Program [ParTNerSTEPs]), following the Medical Research Council's (MRC) framework for developing and evaluating complex interventions (Craig et al, 2013;Thomsen et al, 2022b).…”

Section: Introductionmentioning

confidence: 99%

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Nurses' and physicians' perspectives on implementation barriers and facilitators in a transfer program for parents of adolescents with chronic illness

Thomsen,

Koppelhus,

Boisen

et al. 2024

Journal of Advanced Nursing

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AimTo identify barriers and facilitators impacting the implementation of a comprehensive transfer program aimed at parents of adolescents with chronic illness in clinical practice.DesignA real‐time, qualitative process evaluation.MethodsIndividual interviews were conducted with 10 nurses and seven physicians from paediatric and adult outpatient clinics: Nephrology, hepatology, neurology, and rheumatology. Data were analysed through the lens of normalization process theory.ResultsThemes were framed within the theory's four components. (1) Coherence: Healthcare professionals' views on their core tasks and on the parents' role influenced their perception of the program. (2) Cognitive participation: A named key worker, autonomy, and collaboration impacted healthcare professionals' involvement in the program. (3) Collective action: Department prioritization and understanding of the program's aim were key factors in its successful delivery. (4) Reflective monitoring: Participants experienced that the program helped parents during transfer but questioned if the program was needed by all families.ConclusionWe identified three barriers: Healthcare professionals' lack of understanding of the parental role during transfer, top‐down decisions among nurses, and physicians' uncertainty about their role in joint consultations. Facilitators: Healthcare professionals' understanding of the program's purpose and expected effect, the nurses' significant role as named keyworkers, and good collaboration across paediatric and adult departments.Implications for the Profession and/or Patient CareImplementation strategies should be developed before implementing a transfer program in clinical practice.Impact Implementing a parental transfer program in clinical practice can be challenging. Therefore, for successful implementation, it is crucial to identify barriers and facilitators. Barriers and facilitators exist at the personal, professional, and organizational levels, and it is important to understand them. The results of this qualitative study could support the implementation of transfer programs in other settings. Reporting MethodConsolidated criteria for reporting qualitative studies (COREQ).Patient or Public ContributionNo patient or public contribution.What does this paper contribute to the wider global clinical community? Nurses' and physicians' experiences of ownership of the transfer program is essential for successful implementation. Clinics should appoint a named keyworker, preferably a nurse, as the driving force during the implementation of a transfer program. Nurses and physicians should receive training about the purpose, justification, and expected effect of a transfer program before implementation.

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Section: Backg Rou N Dmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Nurses' and physicians' perspectives on implementation barriers and facilitators in a transfer program for parents of adolescents with chronic illness

Thomsen,

Koppelhus,

Boisen

et al. 2024

Journal of Advanced Nursing

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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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“…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

Self Cite

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

Cited by 5 publications

References 61 publications

Nurses' and physicians' perspectives on implementation barriers and facilitators in a transfer program for parents of adolescents with chronic illness

Nurses' and physicians' perspectives on implementation barriers and facilitators in a transfer program for parents of adolescents with chronic illness

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

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