PLWHIV are disempowered

ASSESSING PATIENTS EMPOWERMENT AND INVOLVEMENT IN HIV/AIDS MANAGEMENT AND PREVENTING TRANSMISSION 

Mandisa Nikita Dukashe¹   

High levels of patients engagement in HIV care are considered essential to maintaining optimal health benefits, and patients who are on treatment and retained in HIV care are known to have better health outcomes. The main objective of this study was to understand whether patients with HIV are empowered and involved in managing their HIV/AIDS illness and prevention of its transmission. The study adopted a qualitative phenomenological approach to understand clients’ empowerment and involvement in HIV care, the researcher conducted 8 focus group discussions and 3 in-depth interviews with two distinct groups: clients who attended medical appointments and collected their treatment from the health facility and health care providers who serve these clients. Study findings showed that powerlessness extends well beyond strictly medical and treatment-related issues. Study participants expressed or demonstrated to have at some point lack of knowledge that is a threat to self-management, might impact negatively on their treatment outcome and their ability to prevent transmitting HIV. The key recommendation is to ensure that the health care system makes information available to patients (and their families) to make informed decisions when selecting a health plan, hospital, and choosing alternative treatments. The system should also ensure patients are empowered about their role in preventing transmission of HIV. This should include information describing treatment side effects, potency of drugs, alternative medicines, connection between treatment adherence and virus suppression in preventing HIV transmission, and patient satisfaction surveys which are also critical to monitor the quality of care provided to individual patients. Strengthening patient’s involvement in decision making should be considered “patient centred” in ensuring patients see themselves as part of the team, not as passive recipients of care. More vulnerable patients may feel less secure in health care interactions, and these feelings may be amplified if patients have an unreasonable impression of what constitutes a ‘good’ patient; thereby leading to disengagement in care. Insights from our findings can inform the development of patient-centred, tailored messages and other compliance strategies to better assist non-complying patients to adhere to HIV treatment and care. 

Keywords: HIV, health care system, empowerment, patient engagement, patient centred