Dataset Information

Home care experience and nursing needs of caregivers of children undergoing congenital heart disease operations: A qualitative descriptive study.

ABSTRACT:

Aims and objectives

To explore the home care experiences of caregivers taking care of CHD children before and after cardiac surgery.

Background

Despite the prevalence of congenital heart disease (CHD) in childhood, little is known about the experiences and impacts on the children and their caregivers after CHD diagnosis and surgery. Such knowledge is needed for meaningful support.

Design

A qualitative descriptive study.

Methods

Twenty-two caregivers of CHD children undergoing cardiac surgery participated in semi-structured interviews at a University Children's Hospital in China. Data were collected by an experienced and trained interviewer. Qualitative content analysis was chosen to describe the experiences of the caregivers.

Results

Caregivers of CHD children experienced significant demands. After the children underwent their CHD operations, the caregivers experienced complex psychological feelings and excessive stress impacting upon theirlives. In addition, caregivers constantly adapted their roles with self-fulfillment in caring activities.

Conclusions

CHD surgery has a major impact on the emotions and daily lives of children and their caregivers. This study offers a framework for understanding the importance of actively listening to caregivers so coping strategies can be implemented.

Relevance to clinical practice

Theexperiencesdescribed in this study contribute to a better understanding of the needs of caregivers whose children underwent CHD operations. They also provide valuable information to professional medical care staff that developfuture nursing assessments.

SUBMITTER: Ni ZH

PROVIDER: S-EPMC6417691 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Home care experience and nursing needs of caregivers of children undergoing congenital heart disease operations: A qualitative descriptive study.

Ni Zhi Hong ZH Lv Hai Tao HT Ding Sheng S Yao Wen Ying WY

PloS one 20190314 3

<h4>Aims and objectives</h4>To explore the home care experiences of caregivers taking care of CHD children before and after cardiac surgery.<h4>Background</h4>Despite the prevalence of congenital heart disease (CHD) in childhood, little is known about the experiences and impacts on the children and their caregivers after CHD diagnosis and surgery. Such knowledge is needed for meaningful support.<h4>Design</h4>A qualitative descriptive study.<h4>Methods</h4>Twenty-two caregivers of CHD children u ...[more]

PMID: 30870440

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Project description:BackgroundVietnam has experienced a rapid increase in cancer incidence with many cancers (70%) being diagnosed at a late stage. The majority of physical and psychosocial care is provided by caregivers with minimal professional input. Due to limited resources in hospitals and social and cultural norms regarding caregiving in Vietnam, caregivers provide a range of supportive functions for family members diagnosed with cancer.ObjectivesThis study sought to provide empirical evidence on the self-identified unmet needs of caregivers of inpatients in national oncology hospitals in Vietnam.MethodsFocus groups and in-depth interviews were conducted with caregivers (n = 20) and health care providers (n = 22) in national oncology hospitals in Hanoi and Ho Chi Minh City. Data was collaboratively analysed using thematic analysis. Findings were validated through key stakeholder group discussions with both caregivers and healthcare providers across multiple regions in Vietnam.ResultsAnalysis demonstrated that the burden of informal care is high with many caregivers managing patient's severe and complex health needs with minimal support. Caregivers highlighted four main areas of critical need: (i) challenges in providing long term care, particularly in hospital and in-patient settings, such as accessing comfortable facilities, accommodation and finance; (ii) information needs about cancer, treatment, and nutrition; (iii) support for the emotional impact of cancer; and (iv) training about how to provide care to their family members during treatment and recovery phases.ConclusionsCaregivers provide invaluable support in supporting people with a cancer diagnosis, particularly given wider systemic challenges in delivering cancer services in Vietnam. Increasing visibility and formal support is likely to have both a positive impact upon the health and wellbeing of caregivers, as well as for cancer patients under their care. Given its absence, it is critical that comprehensive psychosocial care is developed for caregivers in Vietnam.

Dataset Information

Home care experience and nursing needs of caregivers of children undergoing congenital heart disease operations: A qualitative descriptive study.

Aims and objectives

Background

Design

Methods

Results

Conclusions

Relevance to clinical practice

Publications

Home care experience and nursing needs of caregivers of children undergoing congenital heart disease operations: A qualitative descriptive study.

Similar Datasets

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