Illness Experiences of People Living with HIV in Kenya: A Case Study of Kisumu County

## Background to the Study More than thirty years after the onset of the global HIV pandemic, HIV continues to be both a huge public health burden and a social concern. By the end of 2013, an estimated 35 million people lived with HIV globally. Nearly 70% of people living with HIV (PLHIV) resided in Sub-Saharan Africa with Kenya accounting for an estimated 1.6 million over the same period. Despite highly active antiretroviral therapy (HAART) enhancing the chances for longer life, PLHIV still encounter multiple challenges including stigma and discrimination and livelihood insecurity. These difficulties notwithstanding, literature suggests that PLHIV struggle to innovate within their social spheres to find means of leading meaningful lives. However, little research has been done in Kenya from a phenomenological perspective to describe the lived experiences of PLHIV in the context of improved quality of life and longevity. ## Objective The main objective of this study was to provide a detailed phenomenological description of the illness experiences of PLHIV in Kisumu County of Kenya. The study inquired into how PLHIV in Kisumu County made sense of their HIV status, how being diagnosed HIV positive affected their lives and which coping strategies they adopted in order to adapt to a life with HIV. The study also researched into the difficulties that PLHIV faced in adapting to their new status. ## Theoretical Framework The study was guided by the symbolic interactionist and the chronic illness trajectory theories. Both theories are embedded in the interpretative tradition. The interpretivist tradition views meanings as products of the process of social interaction through which agents mutually interpret events and phenomena, thereby creating commonly negotiated meanings. According to symbolic interactionism, this interaction process is mediated by symbols, chiefly, a commonly shared language. ## Methodology The study adopted a qualitative research methodology. The hermeneutic phenomenological design was used to guide data collection, coding and analysis. Ethical approval was granted by the Kenyatta University Ethical Review Committee and the Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH). Data was collected through 49 in-depth interviews, (30 females and 19 males), eight (8) focus group discussions (FGDs) and six (6) key informant interviews. Data was digitally recorded, personally transcribed, deductively and inductively coded and analysed with the help of the MAXQDA qualitative data analysis software. Data is presented in form of quotations and interpretations of the researcher. ## Key Findings The study findings are presented in three parts, in chapters 3, 4, and 5 respectively. Each of these chapters deals with a specific domain as follows: being diagnosed HIV positive; effects of HIV on the lives of PLHIV and the coping strategies PLHIV adopted as well as the difficulties they faced. PLHIV got to know their status within four main circumstances: personal illness, spouse’s death or illness, antenatal care, and public health campaigns. The majority reported initially accepting their status and adopting positive living, although nearly all expressed some degree of fear, shock, and pain or sadness. Reconciliation to the diagnosis was mediated by psychosocial support, quest for health and longevity, the perception of high HIV prevalence and the present and future well-being of their children. The effects on social relationships involved stable, stigmatizing and discriminatory, improved and restructured interaction patterns. The effects on capacity to fulfill social obligations included retained, regained, and diminished capacity to work. The sense of self was perceived as either being stable, disrupted, or restored. Coping strategies adopted included receiving psychosocial and emotional support, practicing faith and religious beliefs, social engagement, adherence to medication and clinical appointments, livelihood enhancement, adoption of safe sexual behaviours, and abstinence from or minimizing the use of alcohol and other drugs. Difficulties faced included insecure livelihoods, stigma and discrimination, and inability to provide for their children’s education. ## Discussion People in Kisumu County were diagnosed HIV positive under a variety of circumstances and reacted in diverse ways in making sense of their diagnosis. The emotional and psychological reactions are a normal process that help people make sense of traumatic experiences. A number of conditions helped the participants reconcile with a positive HIV diagnosis. These included psychosocial support and counseling from patient support centers (PSC), families and support groups and the availability and accessibility of ART. PLHIV are creative agents who devise pragmatic mechanisms to live successfully with HIV amidst stigma, discrimination and morally judgmental attitudes. The coping strategies adopted have helped PLHIV to adapt well, and enabled them to continue with their social obligations, maintain their social relationships and retain relatively stable perceptions of self. PLHIV in Kisumu County are however still confronted by a number of difficulties that hamper their coping efforts. ## Conclusions and Recommendations PLHIV are able to cope and adapt well to the disruptions, contradictions and difficulties of living with HIV. However, for their coping to be adaptable, they need the psychosocial, emotional and material support of their families, communities, health providers and the wider society. It is therefore recommended that the design and implementation of policy and programmatic interventions should involve all stakeholders, including PLHIV. Other recommendations include provision of HIV-related information and education to the communities, review of the health education curriculum, ensuring sustainability of ART and provision of adequate health care resources.