Investigating the need for a home-based health care programme in support of the parents/ caregivers of children diagnosed with heart disease in the rural areas of Namibia
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Date
2013
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Abstract
The incidence of congenital heart disease (CHD) has been reported to be 8 out of 1000 live born infants worldwide. Accordingly, congenital heart defects and rheumatic heart diseases contribute to approximately ten percent (10%) of all paediatric admissions to health care facilities in Namibia as compared to the proportion of diarrheal (3%) and acute respiratory infection (3%). Congenital heart diseases account for 9% of neonatal deaths in Namibia (WHO 2006; WHO 2009). Clearly, the situation in Namibia is grave as regard to profile of heart diseases among children. The majority of children with heart disease are from the rural areas. If they are not acute sick, the majority of these children often receive treatment as outpatients and their parents/caregivers are expected to cope
with the demands of caring for these children at home. Taking care of a child with a
heart disease at home is daunting task for the parents and the caregivers as extreme vigilance on their part is required. However, this degree of vigilance cannot be realized by the parents of children with heart diseases who are from the rural areas in Namibia, because there is no support system in place to enable them to cope with the demands of caring at home. The aim of this study was to explore and describe the lived experiences of their parents/caregivers as regard caring for a child with a heart disease at home and the experience of living with heart diseases by the children with the purpose to identify the needs for facilitation of coping with the demands of caring and to develop a home-based health care programme to facilitate coping with such a situation. A qualitative, exploratory, descriptive, contextual and phenomenological study was conducted to describe the participants’ experiences, identify need for assistance and assess the possibility of remedial actions to help parents and caregivers cope with caring at home. The study was performed in three sequential research phases. Phase I involved the situational analysis through the description of the participants experiences of caring for a child with a heart disease and of living with a heart disease
respectively. Phenomenological data was collected from a purposefully selected sample of 5 multiple cases of parents/caregivers and children with heart disease from the rural areas in Namibia. The data was collected by means of in-depth interviews, field note and the pictorial naïve drawings by the child participants until data saturation was reached. The data were analysed using the Tesch method of qualitative data analysis. The findings revealed that the parents/caregivers were struggling to cope with the demands of care and, hence, there was a clear need to empower them so as to facilitate their coping. Phase II involved the conceptualisation of the research and the development of a homebased
health care programme. Accordingly, a home-based, health care programme,
which encompassed multi-component interventions to facilitate coping, was developed for the parents/caregivers and the children concerned. Phase III involved the implementation and evaluation of the programme at the households of the study participants. A two-day workshop was facilitated at each household in order to implement the programme interventions. The programme outcome evaluation was conducted three months after the programme implementation with the findings of the evaluation indicating that the programme interventions has, indeed,
empowered the parents/caregivers to cope with the demands of care. In conclusion, the experiences of poor coping on the part of the caregivers of children
with heart diseases from the rural areas in Namibia calls for innovations from both
health care providers and other social systems to support the caregivers and enable them to cope in providing home acre to their children with heart disease. In this regard, the recommendations were made with regard to health care providers to implement contextualised health education to the parents/caregivers of children with heart disease to enable parents/caregivers to continue with palliative care at home, the inclusion of interventions contained in this programme in the health care programmes at the district level of health care delivery and the provision of social grant to children diagnosed with heart diseases whose parents/caregivers are economically vulnerable.
Description
A dissertation submitted in fulfilment of the requirements for the Degree of Doctoral of Nursing Science.
Keywords
Heart disease