Contribution of caregivers in community home based care programmes : the case of Kanye, Botswana

Abstract

The aim of the study was to assess the contribution that Kanye caregivers make to Kanye Community Home Based Care (CHBC) programme for the people living with HIV /AIDS (PLWHA's) and other terminally ill patients. The following were the study's specific objectives: To assess the contribution of the caregivers in the programme; to explore the psychosocial support available to the caregivers in the programme; to determine the involvement of the caregivers in planning and designing the care package in the programme; to determine the training needs of the caregivers in the programme; and to devise strategies to enhance delivery capacities of the caregivers in the programme. Qualitative design was used in the study and entailed the whole population of the registered caregivers and the only four CHBC nurses in the programme and their coordinator. The nurses served to confirm and cross check the responses of the caregivers. The study revealed that caregivers have adequate ownership spirit because they care for their close blood relatives and thus guarantee sustainability of the programme. The following factors were found detrimental to the care process and thus compromising the quality of care and marginalizing caregivers' contribution: Stress and burnout; age and gender dimension of the caregivers; lack of training; inadequate community support networks; lack of supervision by health care providers; inadequate services of the social workers; use of traditional and spiritual healers; inadequate psychological support; lack of support groups; lack of caregiver motivation or incentives; inadequate care package and food basket; poverty; lack of caregivers' recognition and involvement in decision making process; and poor state of referral hospital. The study also confirmed all the researcher's assumptions, namely, that: the caregivers are overwhelmed, frustrated ,

stressed and suffer burn out due to lack of psychosocial support; care giving process as practiced by the CHBC programme does not satisfy the Government objective of being a safety valve for congestion in the hospitals; lack of training poses a big challenge to the caregivers and contributes largely to poor service delivery; and that the caregivers' morale, working capacity and state of duty ownership is negatively affected by lack of consultation in planning and designing the care package. In addition, the study has shown that the operation on the ground does not meet programme's objectives, that is, the programme does not serve as a good alternative to the congested health facilities. On the basis of the findings, the following are recommended in order to improve care giving quality: training, civil society participation, donor support intervention, youth participation, men to take caring duties, fundraising, recognition to the caregivers and their roles, strategies to alleviate poverty, adequate health care providers, need for care respite and relief for the caregivers, making food basket adequate to meet the clients' needs. Furthermore, there should be provision of adequate financial and material incentives, improvement of the conditions of the referral network and referral hospital, starting of caregivers' support groups, involvement of caregivers and clients in decision making process, mounting anti-stigma and anti-discriminatory campaign and having national policies sensitive to the needs of caregivers. It is also recommended that researches be carried out to find out why the Kanye caregivers are shunning the services of traditional and spiritual healers; how a strong partnership can be forged between hospices and care programmes; and coming up with a Botswana caregivers' operational model. It is hoped that the Government will accept the current care giving status quo and critically look at each assumption and work

towards filling the gaps if the current dented care giving image is to change and promise good results.