Family management experience of parents of children with chronic heart failure: A qualitative study

Ai, Zhang; Zheng, Xiao; Shen, Qiao; Zhang, Qin; Leng, Hongyao

doi:10.1016/j.pedn.2023.07.006

Cited by 3 publications

(6 citation statements)

References 23 publications

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“…To our knowledge, no previous synthesis has been completed on this topic. Our research uncovered only one recent qualitative study by Zhang et al (2023) that met our inclusion criteria, confirming a significant knowledge gap about caregivers' information needs and experiences caring for a child with HF. The study included 16 participants, uncovering three themes and ten subthemes relating to caregivers' family management who have a child with chronic heart failure (Table 3).…”

Section: Discussionsupporting

confidence: 57%

“…The results from the included Zhang et al (2023) study are not unexpected. The reviewers suspected it that families who have a child with chronic heart failure experience difficulties with socialization and economic burden, imposing psychological repercussions on caregivers.…”

Section: Discussionmentioning

confidence: 73%

“…The included study (Zhang et al, 2023) was conducted in China from April 2021 to 2022 and published in English. The study explored the experience of family management among caregivers who have a child with chronic HF, recruiting caregivers and interviewing them using semi-structured interviews.…”

Section: Resultsmentioning

confidence: 99%

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A Qualitative Evidence Synthesis Exploring Caregiver Information Needs and Experiences Caring for a Child with Chronic Heart Failure

Cunningham,

Schroeder,

Plesuk

et al. 2024

Preprint

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Aim: To synthesize qualitative studies relating to caregivers' information needs and experiences caring for a child with chronic heart failure. Background: Children with chronic heart failure (HF) place a considerable burden on healthcare systems each year and is associated with significant stress for caregivers. Despite substantial knowledge generation and implementation amongst healthcare providers in this field, knowledge translation strategies that target caregiver audiences have lagged. To date, little is known about what literature exists about caregiver's information needs and experiences caring for a child with HF. Design: Qualitative evidence synthesis Methods: Sandelowski and Barroso's Handbook for Synthesizing Qualitative Research guided our review, cross-referencing the ENTREQ statement to report our findings. With librarian guidance, seven databases were searched in November 2023. Search results were imported into Microsoft Excel from EndNote 21. Two independent reviewers (CC, KS), supervised by a senior author (SDS), conducted the initial title/abstract and secondary full-text screens. Results: One study met the inclusion criteria outlined in our synthesis, identifying three themes and ten subthemes. Our findings impeded the ability to conduct any analysis. Conclusion: This review was the first of its kind, looking to synthesize caregiver's information needs and experiences caring for a child with chronic HF. One article met the inclusion criteria. This synthesis highlights a significant knowledge gap in caregivers' experiences and information needs when caring for a child affected by chronic heart failure. This study emphasizes that previous educational tools were not designed using research evidence about parent experience. This also validates the critical need for qualitative interviews with parents about their information needs and experiences to provide more relevant and understandable information to parents in this difficult situation.

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Section: Discussionsupporting

confidence: 57%

Section: Discussionmentioning

confidence: 73%

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A Qualitative Evidence Synthesis Exploring Caregiver Information Needs and Experiences Caring for a Child with Chronic Heart Failure

Cunningham,

Schroeder,

Plesuk

et al. 2024

Preprint

View full text Add to dashboard Cite

show abstract

“…Elements of these themes can certainly be relatable in our 5 themes, namely our emotional distress category and Zhang (2023) psychological stages theme (worry and exhaustion). 26 Our paper provides new knowledge concerning parent learning, whereas Zhang suggests insufficient information was available under their family management dilemma theme but does not provide any further detail.…”

Section: Discussionmentioning

confidence: 92%

“…Zhang et al ( 2023) published a study from Asia that uncovered findings related to challenges with family management with a child with chronic heart failure, uncovering three themes. 26 The themes were titled 1) weakened family socialization, 2) the experience of five psychological stages, and 3) family management dilemmas. Each theme had 2-5 subthemes supporting the development of the main theme.…”

Section: Discussionmentioning

confidence: 99%

A Qualitative Descriptive Study Exploring Caregivers' Information Needs and Experience Caring for a Child with Chronic Heart Failure

Cunningham,

Conway,

Zahoui

et al. 2024

Preprint

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Background: Chronic phenotypes of pediatric heart failure pose life-long burdensome symptoms for the healthcare system and families. Treatment involves complex medical therapies with few surgical options until more advanced, refractory stages. Caregivers must become proficient in providing care to these vulnerable children in the home environment, which imposes a high amount of stress. Despite caregiver demands, little is known about caregiver information needs and experiences caring for a child with chronic heart failure. Therefore, a qualitative approach employing semi-structured interviews aimed to fill this knowledge gap. Methods: A qualitative descriptive methodology guided our study. Participants were recruited from a tertiary cardiac centre in Edmonton, Alberta, Canada. Data collection and analysis occurred concurrently. Semi-structured interviews were conducted until data redundancy was achieved. Inductive content analysis was used to uncover categories. Results: Eleven interviews identified five main categories. Three categories related to information needs: 1) sources of information, 2) profound stress steepens the learning curve, and 3) acknowledging that learning heart failure takes time. Two categories related to experience: 4) the emotional rollercoaster, feelings of emotional distress, and 5) the hard reality of caring for a child with heart failure: always on the clock. Conclusions: To our knowledge, this is the first North American situated qualitative study to provide key insights about caregivers? information needs and experiences caring for a child with chronic heart failure. This knowledge provides insight to enhance and optimize clinical care and outcomes in this population and will inform the design of an arts-based information tool targeting caregivers.

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Exploring Caregiver Learning and Experiences Caring for a Child With Heart Failure: A Qualitative Study

Cunningham,

Conway,

Zahoui

et al. 2024

CJC Pediatric and Congenital Heart Disease

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Family management experience of parents of children with chronic heart failure: A qualitative study

Cited by 3 publications

References 23 publications

A Qualitative Evidence Synthesis Exploring Caregiver Information Needs and Experiences Caring for a Child with Chronic Heart Failure

A Qualitative Evidence Synthesis Exploring Caregiver Information Needs and Experiences Caring for a Child with Chronic Heart Failure

A Qualitative Descriptive Study Exploring Caregivers' Information Needs and Experience Caring for a Child with Chronic Heart Failure

Exploring Caregiver Learning and Experiences Caring for a Child With Heart Failure: A Qualitative Study

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