Needs and Experiences of Adolescents with Congenital Heart Disease and Parents in the Transitional Process: A Qualitative Study

Hosson, Michèle de; Goossens, Peter; Backer, Julie De; Wolf, Daniël De; Hecke, Ann Van

doi:10.1016/j.pedn.2021.03.016

Cited by 12 publications

(6 citation statements)

References 28 publications

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“…At the same time, young people also looked forward to increased choice and autonomy, and parents/caregivers viewed the transition as part of a natural progression to adulthood. These findings support the work of other qualitative researchers in that young people and parents/caregivers have both positive and negative expectations of the transition 64 65. The commonly reported fear of leaving the family-centred approach to care, standard within the paediatric healthcare setting, and the sense of safety associated with this model58 59 66 highlights the value young people and parents/caregivers place on the patient–healthcare professional relationship.…”

Section: Resultssupporting

confidence: 83%

“…These findings support the work of other qualitative researchers in that young people and parents/caregivers have both positive and negative expectations of the transition. 64 65 The commonly reported fear of leaving the family-centred approach to care, standard within the paediatric healthcare setting, and the sense of safety associated with this model 58 59 66 highlights the value young people and parents/caregivers place on the patient–healthcare professional relationship. It further re-affirms the importance of meeting the new adult healthcare team so that relationships are established early.…”

Section: Resultsmentioning

confidence: 99%

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Transitioning between paediatric and adult healthcare services: a qualitative study of the experiences of young people with spinal cord injuries and parents/caregivers

et al. 2022

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ObjectivesHealthcare transition (HCT) interventions are pivotal to paediatric rehabilitation. However, there has been limited research focusing on HCT in young people with spinal cord injury (SCI). To date, little has been reported on key factors that may contribute to a positive or negative transition experience and what, if any, are the gaps in the transition process. This study explored the experiences of transition from paediatric to adult healthcare for young people with SCI and parents/caregivers in pursuit of co-designing and developing an intervention to support transition.Design, setting and participantsThis qualitative study forms part of the planning phase of a larger participatory action research project. It supports obtaining a rich understanding of the phenomenon and the issues and actions necessary to achieve change. Semi-structured individual interviews were conducted online between April and June 2021 with young people with SCI and parents/caregivers who had transitioned or were preparing for the transition from paediatric to adult healthcare in NSW, Australia. The interviews were analysed using an inductive reflexive thematic analysis approach.ResultsThe study recruited nine participants, five young people with SCI and four parents/caregivers. The interviews provided invaluable insight into young people with SCI and their parents’/caregivers’ experiences of HCT. As HCT experiences were often less than optimal and needs were not adequately met, some recommendations were offered. These included a coordinated and streamlined handover from paediatric to adult healthcare providers, and a ‘one-stop shop’ for young people with SCI and their parents/caregivers to access transition information, such as how it occurs, who to call for ongoing support and advice, and tips on how to transition successfully.ConclusionProviding a coordinated and streamlined handover process as well as access to more context-related information could improve the transition experiences of young people with SCI and parents/caregivers, resulting in improved health outcomes and greater independence.Trial registrationACTRN12621000500853.

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Section: Resultssupporting

confidence: 83%

Section: Resultsmentioning

confidence: 99%

Transitioning between paediatric and adult healthcare services: a qualitative study of the experiences of young people with spinal cord injuries and parents/caregivers

et al. 2022

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“…The more active the parents of the patient are, the lower the sense of disease uncertainty. de Hosson M et al [ 12 ] also obtained similar results regarding parents' uncertainty and coping styles in their study of children with congenital heart disease after surgery. Some researchers also found that the higher the educational level of family members, the lower the disease uncertainty [ 31 , 32 ].…”

Section: Discussionmentioning

confidence: 56%

“…Illness uncertainty can damage family members' quality of life and physical and mental health, affect family members' role adaptation, interfere with their decision-making functions, and affect the patient's disease recovery [ 9 , 10 ]. In recent years, disease uncertainty among parents has received increasing attention, but research has mainly focused on the parents of children receiving palliative care [ 11 ] or children with congenital heart disease [ 12 ] or epilepsy [ 13 ]. Parents of children with SWS have a high level of illness uncertainty, and their psychological state is not good.…”

Section: Introductionmentioning

confidence: 99%

Current situation and influencing factors of disease uncertainty in parents of children with Sturge‒Weber syndrome: a retrospective study

Xiong

et al. 2023

BMC Pediatr

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Background Sturge Weber syndrome (SWS), can cause extensive capillary malformations on the face, head, trunk, and other parts of the body, and the eyes can also suffer optic nerve injury. Secondary glaucoma can cause blindness, which has the characteristics of a relatively hidden onset and unclear pathogenesis. The treatment of SWS secondary glaucoma has always been difficult, and due to the characteristics of the disease, there is uncertainty about the long-term efficacy and safety of various treatment methods for such patients. Methods A total of 105 parents of children with SWS completed a self-designed general information questionnaire, a generalized anxiety questionnaire (GAD-7), a patient health questionnaire (PHQ-2), a stress perception scale (PSS-4), a simple coping scale (SCSQ) and a disease-uncertainty scale (PPUS). Results The total uncertainty score of parents of children with SWS was 79.07 ± 13.24, and the average item score was 2.82 ± 0.47. Multiple linear regression analysis revealed that anxiety and simple coping were the main influencing factors of disease uncertainty among parents of children with SWS (P < 0.05). Conclusions Parents of children with SWS exhibit a high level of disease uncertainty. Medical staff should pay attention to the source of parents' disease uncertainty and provide targeted interventions, which are of great importance in reducing parents' disease uncertainty.

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“…22 Similarly, De Hosson et al commented that parents often see the pediatric cardiologist as a confidant. 23 That, combined with their longstanding relationship, which often started at the time of the diagnosis during the child's infancy or even before the child's birth, may make it especially stressful for parents to leave the pediatric service. With that in mind, ideally medical centers should offer "transfer visits" where both the adult and pediatric cardiologists attend.…”

Section: Results and Commentsmentioning

confidence: 99%

Adolescents and Adults With Congenital Heart Disease: Why Are They Lost to Follow-Up?

Liu

Jackson

Menahem

2023

World J Pediatr Congenit Heart Surg

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Almost 90% of infants with congenital heart disease (CHD) now reach adulthood but require long-term surveillance to recognize and manage residual and/or evolving lesions. Yet many are lost to follow-up. A scoping review identified four specific domains that pose barriers to consistent follow-up. There are multiple issues associated with transition from pediatric to adult care which included—the lack of a seamless transfer, the establishment of a new trusting relationship, promoting the right balance of patient autonomy and addressing knowledge gaps. Additional issues related to logistic problems of time, distance, cost, and the availability of specialized care, are further compounded by the psychosocial factors and the heterogeneity of the cardiac abnormality affecting our patients. Further study of all these issues is warranted to improve ongoing engagement.

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Needs and Experiences of Adolescents with Congenital Heart Disease and Parents in the Transitional Process: A Qualitative Study

Cited by 12 publications

References 28 publications

Transitioning between paediatric and adult healthcare services: a qualitative study of the experiences of young people with spinal cord injuries and parents/caregivers

Transitioning between paediatric and adult healthcare services: a qualitative study of the experiences of young people with spinal cord injuries and parents/caregivers

Current situation and influencing factors of disease uncertainty in parents of children with Sturge‒Weber syndrome: a retrospective study

Adolescents and Adults With Congenital Heart Disease: Why Are They Lost to Follow-Up?

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