Lived experience of people living with HIV in Blantyre, Malawi: an exploratory qualitative study.

Background: People living with the Human Immunodeficiency Virus (HIV) encounter a range of complex challenges that impact their physical, psychological, and social well-being. The combined effects of these challenges significantly impact their daily functioning. Despite the relatively high prevalence of HIV in Malawi, there is limited knowledge on how the challenges experienced by people living with HIV correlate with their societal participation and performance of activities. Objectives: This study aimed to explore the lived experience of people living with HIV and how the challenges experienced impact societal participation and activity performance. Method: A qualitative exploratory study design was used. Fourteen participants were purposefully selected for the study, with an equal number of males and females. The data was gathered through semi-structured interviews and manually analyzed using thematic analysis. Results: It was found that participants faced discrimination, stigma, depression, anxiety, and worries. The study participants associated their taking of antiretroviral therapy with physical impairments such as dizziness, leg pain, yellow eyes, and fatigue. The physical impairments hampered participants' ability to walk, work, conduct business, perform household chores, and care for children. Conclusion: This study identified the difficulties that people living with HIV faced in their communities and how these challenges impact societal participation and performance in activities. There is a need for a holistic approach to managing these challenges and making referrals to specialized professionals.

Lived experience of people living with HIV in Blantyre, Malawi: an exploratory qualitative study

Background People living with the Human Immunodeficiency Virus (HIV) encounter a range of complex challenges that impact their physical, psychological, and social well-being. The combined effects of these challenges significantly impact their daily functioning. Despite the relatively high prevalence of HIV in Malawi, there is limited knowledge on how the challenges experienced by people living with HIV correlate with their societal participation and performance of activities. Objectives This study aimed to explore the lived experience of people living with HIV and how the challenges experienced impact societal participation and activity performance. Method: A qualitative exploratory study design was used. Fourteen participants were purposefully selected for the study, with an equal number of males and females. The data was gathered through semi-structured interviews and manually analyzed using thematic analysis. Results It was found that participants faced discrimination, stigma, depression, anxiety, and worries. The study participants associated their taking of antiretroviral therapy with physical impairments such as dizziness, leg pain, yellow eyes, and fatigue. The physical impairments hampered participants' ability to walk, work, conduct business, perform household chores, and care for children. Conclusion This study identified the difficulties that people living with HIV faced in their communities and how these challenges impact societal participation and performance in activities. There is a need for a holistic approach to managing these challenges and making referrals to specialized professionals.

Protocol for a single-centre mixed-method pre-post single-arm feasibility trial of a culturally appropriate 6-week pulmonary rehabilitation programme among adults with functionally limiting chronic respiratory diseases in Malawi.

INTRODUCTION: Malawi has a substantial burden of chronic respiratory diseases (CRDs) which cause significant morbidity and loss of economic productivity, affecting patients, families and health systems. Pulmonary rehabilitation (PR) is a highly recommended non-pharmacological intervention in the clinical management of people with CRDs. However, Malawi lacks published evidence on the implementation of PR for people with CRDs. This trial will test the feasibility and acceptability of implementing a culturally appropriate hospital-based PR programme among adults with functionally limiting CRDs at Queen Elizabeth Central Hospital in Blantyre, Malawi. METHODS AND ANALYSIS: This is a single-centre mixed-methods pre-post single-arm feasibility trial. Ten patients aged ≥18 years, with a spirometry confirmed diagnosis of a CRD and breathlessness of ≥2 on the modified Medical Research Council dyspnoea scale, will be consecutively recruited. Their baseline lung function, exercise tolerance and health status will be assessed; including spirometry, Incremental Shuttle Walk Test and Chronic Obstructive Pulmonary Disease Assessment Test, respectively. Pretrial semistructured in-depth interviews will explore their experiences of living with CRD and potential enablers and barriers to their PR uptake. Along with international PR guidelines, these data will inform culturally appropriate delivery of PR. We initially propose a 6-week, twice-weekly, supervised centre-based PR programme, with an additional weekly home-based non-supervised session. Using combination of researcher observation, interaction with the participants, field notes and informal interviews with the participants, we will assess the feasibility of running the programme in the following areas: participants' recruitment, retention, engagement and protocol adherence. Following programme completion (after 6 weeks), repeat assessments of lung function, exercise tolerance and health status will be conducted. Quantitative changes in clinical outcomes will be described in relation to published minimal clinically important differences. Post-trial semistructured interviews will capture participants' perceived impact of the PR programme on their quality of life, enablers, and barriers to fully engaging with the programme, and allow iteration of its design. ETHICS AND DISSEMINATION: Ethical approval for this trial was obtained from University of Malawi College of Medicine Research and Ethics Committee (COMREC), Blantyre, Malawi (protocol number: P.07/19/2752) and University of Leicester Research Ethics Committee, Leicester, UK (ethics reference: 31574). The results of the trial will be disseminated through oral presentations at local and international scientific conferences or seminars and publication in a peer-reviewed journal. We will also engage the participants who complete the PR trial and the Science Communication Department at Malawi-Liverpool-Wellcome Trust Clinical Research Programme to organise community outreach activities within Blantyre to educate communities about CRDs and PR. We will also broadcast our trial results through national radio station programmes such as the weekly "Thanzi la Onse" (Health of All) programme by Times Radio Malawi. We will formally present our trial results to Blantyre District Health Office and Malawi Ministry of Health. TRIAL REGISTRATION NUMBER: ISRCTN13836793.