Navigating the healthcare system with my child with CHD: parental perspectives on developmental follow-up practices Article Swipe
Marie-Ève Bolduc
,
Janet E. Rennick
,
Isabelle Gagnon
,
Eva Sokol
,
Annette Majnemer
,
Marie Brossard‐Racine
·
YOU?
·
· 2023
· Open Access
·
· DOI: https://doi.org/10.1017/s1047951123001051
YOU?
·
· 2023
· Open Access
·
· DOI: https://doi.org/10.1017/s1047951123001051
Background: Parents of children with CHD face several barriers when trying to access the services needed to support their child’s development. In fact, current developmental follow-up practices may not identify developmental challenges in a timely manner and important opportunities for interventions may be lost. This study aimed to explore the perspectives of parents of children and adolescents with CHD with respect to developmental follow-up in Canada. Methods: Interpretive description was used as a methodological approach for this qualitative study. Parents of children aged 5–15 years with complex CHD were eligible. Semi-structured interviews that aimed to explore their perspectives regarding their child’s developmental follow-up were conducted. Results: Fifteen parents of children with CHD were recruited for this study. They expressed that the lack of systematic and responsive developmental follow-up services and limited access to resources to support their child’s development placed an undue burden on their families, and as a result, they needed to assume new roles as case managers or advocates to address these limitations. This additional burden resulted in a high level of parental stress, which, in turn, affected the parent–child relationship and siblings. Conclusions: The limitations of the current Canadian developmental follow-up practices put undue pressure on the parents of children with complex CHD. The parents stressed the importance of implementing a universal and systematic approach to developmental follow-up to allow for the timely identification of challenges, enabling the initiation of interventions and supports and promoting more positive parent–child relationships.
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- Type
- article
- Language
- en
- Landing Page
- https://doi.org/10.1017/s1047951123001051
- https://www.cambridge.org/core/services/aop-cambridge-core/content/view/C93D5CFC339BD3C7B5E82B647EE0673A/S1047951123001051a.pdf/div-class-title-navigating-the-healthcare-system-with-my-child-with-chd-parental-perspectives-on-developmental-follow-up-practices-div.pdf
- OA Status
- hybrid
- Cited By
- 8
- References
- 28
- Related Works
- 10
- OpenAlex ID
- https://openalex.org/W4368359053
All OpenAlex metadata
Raw OpenAlex JSON
- OpenAlex ID
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https://openalex.org/W4368359053Canonical identifier for this work in OpenAlex
- DOI
-
https://doi.org/10.1017/s1047951123001051Digital Object Identifier
- Title
-
Navigating the healthcare system with my child with CHD: parental perspectives on developmental follow-up practicesWork title
- Type
-
articleOpenAlex work type
- Language
-
enPrimary language
- Publication year
-
2023Year of publication
- Publication date
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2023-05-04Full publication date if available
- Authors
-
Marie-Ève Bolduc, Janet E. Rennick, Isabelle Gagnon, Eva Sokol, Annette Majnemer, Marie Brossard‐RacineList of authors in order
- Landing page
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https://doi.org/10.1017/s1047951123001051Publisher landing page
- PDF URL
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https://www.cambridge.org/core/services/aop-cambridge-core/content/view/C93D5CFC339BD3C7B5E82B647EE0673A/S1047951123001051a.pdf/div-class-title-navigating-the-healthcare-system-with-my-child-with-chd-parental-perspectives-on-developmental-follow-up-practices-div.pdfDirect link to full text PDF
- Open access
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YesWhether a free full text is available
- OA status
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hybridOpen access status per OpenAlex
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https://www.cambridge.org/core/services/aop-cambridge-core/content/view/C93D5CFC339BD3C7B5E82B647EE0673A/S1047951123001051a.pdf/div-class-title-navigating-the-healthcare-system-with-my-child-with-chd-parental-perspectives-on-developmental-follow-up-practices-div.pdfDirect OA link when available
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Psychological intervention, Medicine, Qualitative research, Developmental psychology, Child development, Nursing, Psychology, Psychiatry, Social science, SociologyTop concepts (fields/topics) attached by OpenAlex
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8Total citation count in OpenAlex
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2025: 5, 2024: 3Per-year citation counts (last 5 years)
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28Number of works referenced by this work
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10Other works algorithmically related by OpenAlex
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