Health Care Transition Perceptions Among Parents of Adolescents with Congenital Heart Defects in Georgia and New York

Gaydos, Laura M.; Sommerhalter, Kristin M.; Raskind-Hood, Cheryl; Fapo, Olushola; Hsu, Daphne T.; Zutphen, Alissa Van; Glidewell, Jill; Farr, Sherry L.; Rodriguez, Fred H.; Hoffman, Trenton; Book, Wendy

doi:10.1007/s00246-020-02378-z

Cited by 10 publications

(8 citation statements)

References 40 publications

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“…The emotion‐based parental/caregiver outcomes reported in this survey are aligned with prior investigations and confirm parents' concerns about the new health care providers their AYASHCN will have in adult‐focused systems as described in the emotion‐based subtheme outcome of Satisfaction and Confidence (Coyne et al, 2019; Craig et al, 2007; Crawford et al, 2019; Davies et al, 2011; Franklin et al, 2019; Gaydos et al, 2020; Jivanjee et al, 2009; Kingsnorth et al, 2011; Shaw et al, 2006, 2007; Sonneveld et al, 2013; Woodward et al, 2012). Parents/caregivers also experience a shift in their role as they relinquish their responsibility of condition management (Cheak‐Zamora et al, 2017; Heath et al, 2017; Young et al, 2019).…”

Section: Discussionsupporting

confidence: 79%

Stakeholders' perspectives on caregiver outcomes for health care transition for adolescents and young adults with special health care needs: A qualitative study

Fair

Betz

Naranjo

et al. 2023

Child

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BackgroundPrevious literature has explored parent/caregiver perspectives and satisfaction with the health care transition (HCT) process for their adolescents and young adults with special health care needs (AYASHCN). Limited research has explored the opinion of health care providers and researchers on parent/caregiver outcomes associated with a successful HCT for AYASHCN.MethodsA web‐based survey was distributed through the international and interdisciplinary Health Care Transition Research Consortium listserv, which at the time of the survey was composed of 148 providers dedicated to optimizing the HCT of AYAHSCN. Participants responded to the open‐ended question, ‘What parent/caregiver‐related outcome(s) would represent a successful healthcare transition?’ Respondents included 109 providers (52 health care professionals, 38 social service professionals and 19 other). Responses were coded for emergent themes, and research suggestions were identified.ResultsQualitative analyses identified two major themes: emotion‐ and behaviour‐based outcomes. Emotion‐based subthemes included relinquishing control of child's health management (n = 50, 45.9%) as well as parental satisfaction and confidence in their child's care and HCT (n = 42, 38.5%). Respondents also noted that parents/caregivers should experience an improved sense of well‐being and decreased stress (n = 9, 8.2%) due to a successful HCT. Behaviour‐based outcomes included early preparation and planning for HCT (n = 12, 11.0%) and parental instruction on the knowledge and skills necessary for their adolescent to independently manage their health (n = 10, 9.1%).ConclusionsHealth care providers can assist parents/caregivers in learning strategies for instructing their AYASHCN about condition‐related knowledge and skills as well as provide support for ‘letting go’ of the caregiver role during the HCT to adult‐focused health services and adulthood. Communication between the AYASCH, their parents/caregivers and paediatric‐ and adult‐focused providers needs to be consistent and comprehensive to ensure continuity of care and a successful HCT. We also offered strategies to address the outcomes suggested by the participants of this study.

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Section: Discussionsupporting

confidence: 79%

Stakeholders' perspectives on caregiver outcomes for health care transition for adolescents and young adults with special health care needs: A qualitative study

Fair

Betz

Naranjo

et al. 2023

Child

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“…Subsequent CDC‐funded projects expanded surveillance across the lifespan efforts to five sites in 2015, and seven sites currently. These surveillance systems have also propagated other projects to examine barriers to transition to adult cardiac care, distance to care (Gaydos et al, 2020; Insaf et al, 2021; Schlichting, Insaf, Lui, Zaidi, & Van Zutphen, 2020; Sommerhalter et al, 2017), and validity of ICD codes (Rodriguez et al, 2018) for heart defects.…”

Section: Surveillance and Researchmentioning

confidence: 99%

“…Children begin to drop out of cardiology care in childhood, with higher loss to follow up among racial and ethnic minorities (Jackson et al, 2019). Barriers to transitioning from pediatric to adult cardiology care include replacing the strong relationship with the pediatric provider, locating an adult provider, and accessing adult health insurance (Gaydos et al, 2020), and over half of parents of children with heart conditions report not discussing transition issues with their child's provider (Downing, Oster, & Farr, 2017). While the number of centers specializing in care for adults with congenital heart defects has grown considerably over the past decade, it has been estimated that there are still too few adult congenital cardiologists to care for this growing population (Krasuski & Bashore, 2016).…”

Section: Clinical Services and Outcomesmentioning

confidence: 99%

Prevention and awareness of birth defects across the lifespan using examples from congenital heart defects and spina bifida

Farr

Riley

Zutphen

et al. 2021

Birth Defects Research

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“…Parents must make a challenging transition themselves from taking full responsibility for their adolescent’s healthcare to their child self‐managing their disease and becoming a competent patient. It has been shown that assessment of parental perceptions on the transition of AYA with congenital heart defects offered insights into how transition planning could be optimized 11 …”

Section: Introductionmentioning

confidence: 99%

“…It has been shown that assessment of parental perceptions on the transition of AYA with congenital heart defects offered insights into how transition planning could be optimized. 11 By obtaining the perspective of AYA's and their parents on EAACI draft recommendations for transitional care, we aimed (1) to evaluate the importance of each recommendation independently for each group and ( 2) to identify additional factors that need to be included in the 'other considerations' section of recommendations.…”

Section: Introductionmentioning

confidence: 99%

Perceptions of adolescents and young adults with allergy and/or asthma and their parents on EAACI guideline recommendations about transitional care: A European survey

Khaleva

Knibb

Galvin

et al. 2021

Allergy

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Background The European Academy of Allergy and Clinical Immunology has developed a guideline to provide evidence‐based recommendations for healthcare professionals to support the transitional care of adolescents and young adults (AYA) with allergy and/or asthma. The goal of this work was to ensure that the draft recommendations are also important for patients. Methods We surveyed patients aged 11–25 years with allergy and/or asthma and their parents across Europe between 17 February and 16 March 2020. The multilingual survey was distributed through national allergy and asthma patient organizations in Europe as well as through social media. Results A total of 1210 responses from 24 European countries were collected. There were 415 (34.3%) AYA and 795 (65.7%) parents. The majority of AYA (72.3%) and parents (81.9%) were female. Patients had a history of asthma (61.1%), allergic rhinoconjunctivitis (54.1%), food allergy (53.8%), atopic eczema (42.6%) and anaphylaxis (28.8%). All recommendations achieved the median score of either ‘important’ or ‘very important’. The least supported recommendations were the use of joint clinics with both paediatric and adult physicians attending and the use of web‐based or mobile technologies for communication with the AYA. The most supported recommendation was checking that the AYA is knowledgeable and compliant with their prescribed medication. Qualitative analysis revealed conditional approval for some recommendations. Conclusions There was agreement from patients and parents on the importance of the draft recommendations on transitional care for AYA with allergy and/or asthma and their parents. The recommendations now need to be implemented into clinical practice across Europe.

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Health Care Transition Perceptions Among Parents of Adolescents with Congenital Heart Defects in Georgia and New York

Cited by 10 publications

References 40 publications

Stakeholders' perspectives on caregiver outcomes for health care transition for adolescents and young adults with special health care needs: A qualitative study

Stakeholders' perspectives on caregiver outcomes for health care transition for adolescents and young adults with special health care needs: A qualitative study

Prevention and awareness of birth defects across the lifespan using examples from congenital heart defects and spina bifida

Perceptions of adolescents and young adults with allergy and/or asthma and their parents on EAACI guideline recommendations about transitional care: A European survey

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