Amakali Kristofina, Small Louis F
School of Nursing and Public Health, University of Namibia, Namibia.
Glob J Health Sci. 2012 Dec 4;5(2):74-83. doi: 10.5539/gjhs.v5n2p74.
The purpose of this study was to describe how the parents/caregivers of children with heart diseases cope with the demands of caring for these children at home, with the purpose to develop a home-based health care programme to facilitate the parents/caregivers' coping with the demands of care.
A qualitative, exploratory, descriptive, and contextual study was conducted. Phenomenological data on the lived experiences of coping with the demands to care by the parents/caregivers and of living with the burden of the disease by the children were gathered and interpreted from a purposefully selected sample of 5 multiple cases of parents/caregivers and children with heart disease from the rural areas.
The findings have revealed poor coping with the demands of caring among the parents/caregivers, as characterized by the experiences of emotional challenges, disruptive social functioning and social relations, lack of support from the family and societal organizations, financial difficulties and of course the experiences of decreased vitality by the children. As a result, the need to empower the parents/caregivers for them to cope with providing a continuum care to their children who have heart disease was identified. The dynamics to mitigate the negative experiences were conceptualized. Therefore, the interventions of a home-based health care programme as an interface to facilitate the parents/caregivers to cope with the challenges caused by the demands to care were developed.
The need for empowerment of these parents/caregivers can be met through the implementation of multi-component interventions, which draw together all the possible determinants factors and the coping methods to facilitate coping.
本研究旨在描述患有心脏病儿童的父母/照料者如何应对在家照料这些孩子的需求，以便制定一项居家医疗保健计划，帮助父母/照料者应对照料需求。
开展了一项定性、探索性、描述性和情境性研究。从农村地区有目的地选取了5个父母/照料者与患有心脏病儿童的多案例样本，收集并解读了关于父母/照料者应对照料需求的生活经历以及孩子承受疾病负担的现象学数据。
研究结果显示，父母/照料者在应对照料需求方面存在困难，表现为情感挑战、社会功能和社会关系受到干扰、缺乏家庭和社会组织的支持、经济困难，当然还有孩子活力下降的经历。因此，确定了有必要增强父母/照料者的能力，使其能够持续照料患有心脏病的孩子。对减轻负面经历的动态过程进行了概念化。因此，制定了居家医疗保健计划的干预措施，作为促进父母/照料者应对照料需求所带来挑战的一个接口。
通过实施多成分干预措施可以满足增强这些父母/照料者能力的需求，这些干预措施汇集了所有可能的决定因素和应对方法以促进应对。
