Changing Family Roles: Coping Mechanism of Family Carers in Home Based Care in Zambia

Home based care is one important health care strategy to provide health care services to chronically ill individuals in households away from health facilities. In the advent of the HIV/AIDS epidemic, there are an increased number of individuals affected and infected. The chronicity of the disease has exerted different form of pressure on those who may find themselves caring for the infected. 

This interpretive phenomelogical study was conducted in Zambia. The study explored and described how family carers reconstructed their lived care life experiences as they dealt with them, how they coped or didn‟t cope with care demands. Data was generated, transcribed and translated over a period of 10 months through 16 in-depth interviews with family carers, and 10 focus group discussions (3 with Key Informants and 7 with family carers). Data was analysed using thematic analysis and NVIVO software was used to create models. The study adapted the salutogenic model and symbolic interactionism to describe the lived experiences of family carers in HBC situations. 

The study findings show that family members especially women and/or girls were key in the provision of care in households. However, there may be situations where men also became involved in care work. Family carers constructed their care lives based on the confirmed identity of being caregivers whose desire to provide care was mostly based on meaningfulness attached to the relationship with the patient, and derived satisfaction from their input to the health of their patient. There were strong interlinkages between comprehensibility, manageability and meaningfulness (the Generalised Resistance Resources components of the salutogenic model) and emotional closeness in the care situations. 

In the construction of their lived care experiences, one common coping factor was Godly devotions with strong relationship with spirituality and religion which was linked to the three aspects of the GRR. Other coping factors such as “training”, „love for the patient‟, “piece work” and “patient is a relative” were mostly linked to comprehensibility. Caregivers strived to find knowledge and skills to deal with any challenging care situation, and most caregivers lacked these attributes. 

However, their perceived identity as a caregiver generated and strengthened their desire to do something for the patient. In addition, self-identity as caregivers and the sense of filial piety encouraged the motivation to go on despite difficulties faced. Caregivers constructed their care lives based on the meaning the care input meant for the patient, and to those they were ii confirming their identity to as caregivers. Hence meaningfulness was one key component that was observed to be high amongst all as this resource provided them with the desire to go on caring, there were weakness found in comprehensibility and manageability. There were weaknesses felt in comprehensibility as a resource to facilitate cognitive elements of care. Caregivers felt that care work was ordered but not predictable as situations and conditions related to the patient and households were dynamic. They did not have easy access to resources to support their work. Those who devised any coping mechanisms did so within the boundaries of “suffering” with care work. Their care life was viewed as difficult and subjected them to different situations in the health of the patients which they could not provide. Family carers found coping with care giving not easy to attain. 

Family carers made cognisant of the care environment, which did not make available supportive structures to enhance coping with care work. As result of the breakdown of family structures especially the extended families from HIV/AIDS, most family carers experienced an environment that was not conducive to provision of care for chronically ill patients. 

The findings challenge the implementation of HBC as a strategy to help chronically ill PLWHA as health care service at the household. The study suggests that the country‟s recognition of HBC strategy through different policy pronouncement will require concerted efforts to ensure that those providing care in households are provided with effective and efficient support mechanisms to improve care of patients.