Parental uncertainty about transferring their adolescent with congenital heart disease to adult care

Burström, Åsa; Mora, Mariela Acuña; Öjmyr-Joelsson, Maria; Sparud-Lundin, Carina; Rydberg, Annika; Hanséus, Katarina; Frenckner, Björn; Nisell, Margret; Moons, Philip; Bratt, Ewa‐Lena

doi:10.1111/jan.13852

Cited by 15 publications

(8 citation statements)

References 27 publications

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“…In line with previous research, the current study highlighted the uncertainty adults born with OA/TOF and parents often faced when moving into adult health care (Burström et al, 2019; Coyne et al, 2019). Feelings of uncertainty can be increased by a lack of information, so being well prepared and informed can help parents feel more secure in the process of transition (Burström et al, 2019). Similarly, greater knowledge of one's health condition can help the young adults transferring into adult healthcare to feel more confident in their ability to self‐manage and become more independent in managing their health condition (Clarizia et al, 2009).…”

Section: Discussionsupporting

confidence: 86%

The lived experience of adults and parents: Transitioning from paediatric to adult health care with oesophageal atresia and tracheo‐oesophageal fistula

Haig‐Ferguson

Wallace

Davis

2022

Journal of Clinical Nursing

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Aim and Objective: To explore the experience of healthcare transition from paediatric to adult health care for adults born with oesophageal atresia and tracheo-oesophageal fistula (OA/TOF) and parents.Background: OA/TOF is a rare and chronic health condition that can require lifelong medical follow-up and management. There is evidence to suggest that transitioning from paediatric to adult health care can be problematic for people with rare and chronic conditions, including OA/TOF. The previous literature suggests that the experience of transitioning with a rare condition is more complex than transitioning with a common chronic condition. Design:The current study was a qualitative, cross-sectional, survey-based study. Methods: Data were collected through an online survey. Parents of children born with OA/TOF (n = 23) and adults born with OA/TOF (n = 16) were recruited through a UKbased OA/TOF patient charity.Data from six open-ended questions were analysed using a hybrid approach combining elements of inductive and deductive thematic analyses. Throughout the research process, the SRQR were followed.Results: Five themes were constructed during the analysis, reflecting the experience of parents and adults transitioning from paediatric to adult health care: thrown into the unknown; a cultural shift; stepping back and stepping up; 'no transition as such'; and living with uncertainty. Conclusions:The findings suggested that a formalised, managed healthcare transition is not commonly experienced by people born with OA/TOF and parents.Relevance to Clinical Practice: We recommend a formalised healthcare transition process in OA/TOF, including preparation for transition and having a named key worker to manage the multidisciplinary transition process. The results also highlighted the need for adults born with OA/TOF to have access to a specialist health service with knowledge and understanding of issues related to OA/TOF.

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Section: Discussionsupporting

confidence: 86%

The lived experience of adults and parents: Transitioning from paediatric to adult health care with oesophageal atresia and tracheo‐oesophageal fistula

Haig‐Ferguson

Wallace

Davis

2022

Journal of Clinical Nursing

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“…Parenting style and parental support is of paramount importance for adolescents with congenital heart disease throughout transition. Parental uncertainty regarding transition is prevalent, 33 and parental anxiety can lead to overprotection, including reluctance to shift greater responsibility for illness management to their adolescent. 34 , 35 Indeed, parenting styles that are characterized by overprotection, psychological control, punishment, and rejection are associated with the development of heart‐focused anxiety, depressive symptoms, loneliness, worse perceived health, lower QoL, and more risk behaviors.…”

Section: Socioeconomic Psychosocial and Neurocognitive Considerationsmentioning

confidence: 99%

Advances in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease: A Practical Approach to Transition Program Design: A Scientific Statement From the American Heart Association

John¹,

Jackson²,

Moons³

et al. 2022

JAHA

Self Cite

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It is now expected that most individuals with congenital heart disease will survive to adulthood, including those with complex heart conditions. Maintaining lifelong medical care requires those with congenital heart disease to eventually transfer from pediatric to adult‐oriented health care systems. Developing health care transition skills and gaining independence in managing one’s own health care is imperative to this process and to ongoing medical and psychosocial success. This scientific statement reviews the recent evidence regarding transition and provides resources, components, and suggestions for development of congenital heart disease transition programs with the goals of improving patient knowledge, self‐management, and self‐efficacy skills to the level they are capable to eventually integrate smoothly into adult‐oriented health care. Specifically, the scientific statement updates 3 sections relevant to transition programming. First, there is a review of specific factors to consider, including social determinants of health, psychosocial well‐being, and neurocognitive status. The second section reviews costs of inadequate transition including the public health burden and the impairment in individual quality of life. Finally, the last section discusses considerations and suggestions for transition program design including communication platforms, a family‐centered approach, and individual models. Although this scientific statement reviews recent literature surrounding transitions of care for individuals with congenital heart disease there remain significant knowledge gaps. As a field, we have yet to determine ideal timing and methods of transition, and barriers to transition and transfer remain, particularly for the underserved populations. The consequences of poor health care transition are great and garnering outcomes and information through organized, multifaceted, collaborative approaches to transition is critical to improving the lifelong care of individuals with congenital heart disease.

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“…The Uncertainty Scale will measure parental uncertainty. The scale was developed and validated by Burström et al [ 38 ]. The Uncertainty Scale will be completed only by the parents.…”

Section: Interventionsmentioning

confidence: 99%

“…A high total score indicates a high level of adolescent responsibility. (ii) Uncertainty will be measured by the Uncertainty Scale [ 38 ]. The scale measures parental uncertainty during their child’s transfer from pediatric to adult care on a linear analog scale from 0 (not uncertain at all) to 100 (extremely uncertain).…”

Section: Data Collection and Managementmentioning

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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Parental uncertainty about transferring their adolescent with congenital heart disease to adult care

Abstract: A wide range in the levels of uncertainty was found. Parents who were less involved in the care, or perceived their adolescent as readier for the transition, felt less uncertain. Still, thirty percent of the parents had not started to think about the transfer to adult care.

Cited by 15 publications

References 27 publications

The lived experience of adults and parents: Transitioning from paediatric to adult health care with oesophageal atresia and tracheo‐oesophageal fistula

The lived experience of adults and parents: Transitioning from paediatric to adult health care with oesophageal atresia and tracheo‐oesophageal fistula

Advances in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease: A Practical Approach to Transition Program Design: A Scientific Statement From the American Heart Association

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

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