Sepulveda and colleagues estimated that each year, at least one in 200 people in the five African countries that they included in their study (Botswana, Ethiopia, Tanzania, Uganda, and Zimbabwe) needed palliative care at the terminal stages of HIV/AIDS or cancer . This study assessed care and support activities provided to PLWHAs by various institutions in the town of Arba Minch, Ethiopia. The current study showed that 141(62.4%) participants who received care and support services were females and between 26–30 years of age. Our findings underscore that almost all of the care and support activities available are not adequate and not well organized. This is evidenced by the proportion of PLWHA who received care and support as well as by the various components of the care and support activities.
PLWHA have diverse and complex needs in terms of access and provision of care and support services. From our sample of 226 (100%) participants, only a quarter obtained some type of material support. This reflects the limited access to care and support services that is prevalent, and points out to the urgent need to scale-up these services in this region. Scaling-up services could potentially have a significant impact in the social skills of PLWHA and could further impact productivity within their communities. Furthermore, technical support and material support should be increased to adequately provide services and to identify barriers and challenges for service provision and to develop plans to address them.
According to WHO Palliative Care Project in Africa, the basic palliative care package should include analgesics and drugs for symptomatic relief, food and family support . In our study, we found that approximately half of the participants were receiving some type of food support, which was limited to basic cooking materials. This underscores the need to scale-up programs that provide these basic services and to develop mechanisms to ensure that food reaches target populations, while evaluating the impact of such services.
Care should include psychological, social, and economic support as well as broad based medical care incorporating nutritional guidance, prevention and treatment of opportunistic infections and palliative care . In our study setting, local health facilities emphasized medical and nursing care; however, this was not according to the continuum of care and was entirely dependent on external financial support. Given the limited number of associations providing this services in the area, current and new methods of communication should be strengthened and implemented to prevent overlap and make service provision of better quality and more efficient. Services should also include home-based care and support, which was reported as preferable by PLWHA who participated in this study. Previous research conducted in Jimma, Ethiopia showed that home is an ideal place for medical, social and psychosocial care and support . These findings are supported by research in East Africa that explored quality of care and unmet needs of people requiring palliative care [21, 23, 24].
Important issues that need to be addressed are the need for food, the severe financial constraints on the family and caregivers, the need for training of family caregivers, lack of psychosocial support, and social isolation due to the stigma attached to a diagnosis of HIV/AIDS . A study carried out in Ghana showed that even though PLWHA have better health outcomes with ART, they still face psychological isolation and condemnation from their family, friends and society because people around them are aware of their HIV status . Stigma and discrimination can disrupt efforts to receive care and support services. These experiences can have a long-term impact on recovery, and also on the health and psychological status of PLWHA . A study carried out on utilization of ART in Ethiopia reported that female accessibility to this service remained low due to the stigma attached to seeking treatment , emphasizing the need for stronger community and home based care programs . Various community-based programs, which can complement the institution-based approach pursued by the government, focus on community and home-based care and support [30–32].These approaches are currently being implemented by GOs and NGOs . By 2006, home and community-based care programs that are improving benefits and quality of life of PLWHA were being implemented in 14 major towns in Ethiopia . Our study also showed that medical and nursing care, including family planning, preventive therapy, Sexually Transmitted Infections (STI) diagnosis and treatment, bed-based nutritional support, laboratory support, and palliative care are given less attention by care givers. It was said that families and the community should first accept the patient and respect them, and not judge or ostracize them . Protection of human rights and the provision of legal support, as well as psychosocial support are neglected by health facilities or by organizations that have, as their fundamental purpose, to provide these services. Similar findings have been documented in needs assessment carried out in Addis Ababa, Ethiopia, which showed protection of legal and human rights of PLWHA and AIDS orphans as one of their most important concerns . Policymakers can also influence the quality of health care through legislation, regulation and accreditation of minimum standards. Legislation can protect the rights of people with chronic conditions. The promotion of human rights occurs, in part, through access to health care and voluntary treatment. Regulatory frameworks can be developed and enforced that protect healthcare institutions and workers. Anti-discrimination laws for housing and employing persons with chronic conditions can also be adopted . Stigma was a recurrent issue that arose in the interviews that were conducted. It was evident that youths had been denied many rights related to health. We concluded that young people living with HIV/AIDS need comprehensive care based on a human rights approach . The other problem that was given little attention but can have a major impact in the implementation of care and support activities is the lack of client referral and linkage between caregivers and organization. This is mainly reflected by the inadequate range of services and their redundancy. We recommend that this failure can be overcome by improving coordination between organizations through the creation of a local assembly that would gather heads of local organizations, care-givers, community and PLWHA.
Some of the strengths that were identified in our study were that it was conducted to assess care and support services both at the community level and to PLWHA association, this design can provide us with more robust information than relying on either of them individually. Furthermore, we employed qualified and trained data collectors who had adequate and relevant educational background and work experience. We also utilized home based care givers for the household survey to collect data from PLWHAs who are bed ridden and are getting home based care and support. Some of the limitations that we identified in our study were that the study relied on information dating back up to one year of care and support which, may not exactly reflect the recent care and support services provided, recall bias might affect the information obtained from the participants and critically sick respondents, the potential for a selection bias in HIV palliative care evaluation was demonstrated in a study that found patients reported less anxiety, and fewer spiritual problems than in providers’ assessments . Patient self-reports are also subject to bias because of more unwell patients being unable or unwilling to participate.