"Honestly, this problem has affected me a lot": a qualitative exploration of the lived experiences of people with chronic respiratory disease in Sudan and Tanzania.

BACKGROUND: Over 500 million people live with chronic respiratory diseases globally and approximately 4 million of these, mostly from the low- and middle-income countries including sub-Saharan Africa, die prematurely every year. Despite high CRD morbidity and mortality, only very few studies describe CRDs and little is known about the economic, social and psychological dimensions of living with CRDs in sub-Saharan Africa. We aimed to gain an in-depth understanding of the social, livelihood and psychological dimensions of living with CRD to inform management of CRDs in Sudan and Tanzania. METHOD: We conducted 12 in-depth interviews in 2019 with people with known or suspected CRD and 14 focus group discussions with community members in Gezira state, Sudan and Dodoma region, Tanzania, to share their understanding and experience with CRD. The data was analysed using thematic framework analysis. RESULTS: People with CRD in both contexts reported experiences under two broad themes: impact on economic wellbeing and impact on social and psychological wellbeing. Capacity to do hard physical work was significantly diminished, resulting in direct and indirect economic impacts for them and their families. Direct costs were incurred while seeking healthcare, including expenditures on transportation to health facility and procurement of diagnostic tests and treatments, whilst loss of working hours and jobs resulted in substantial indirect costs. Enacted and internalised stigma leading to withdrawal and social exclusion was described by participants and resulted partly from association of chronic cough with tuberculosis and HIV/AIDS. In Sudan, asthma was described as having negative impact on marital prospects for young women and non-disclosure related to stigma was a particular issue for young people. Impaired community participation and restrictions on social activity led to psychological stress for both people with CRD and their families. CONCLUSION: Chronic respiratory diseases have substantial social and economic impacts among people with CRD and their families in Sudan and Tanzania. Stigma is particularly strong and appears to be driven partly by association of chronic cough with infectiousness. Context-appropriate measures to address economic impacts and chronic cough stigma are urgently needed as part of interventions for chronic respiratory diseases in these sub-Saharan African contexts.

'Why would they spend all this money and give us these items for free?': Exploring precarity and power in a cleaner cookstove intervention in rural Malawi.

We carried out a qualitative study to gain a deeper understanding of the social context of the Cooking and Pneumonia Study (CAPS) and implications for implementation of clean cooking and similar interventions. Such initiatives are recognised as complex, power-laden processes, which has consequences for outcomes and uptake. However, understanding of how precarious livelihoods and unequal power differentials impact on trials of technology is limited and potentially hampers the achievement of the SDGs including SDG 7, Affordable and Clean Energy. An in-depth exploration of experiences and perceptions of cooking and cookstove use within CAPS was completed using qualitative methods and the participatory methodology Photovoice. Ten CAPS participants from each of five villages participated in Photovoice activities and five village representatives were interviewed. Twelve fieldworkers participated in gender specific focus groups and four were interviewed. A thematic content approach was used for data analysis. The analysis showed that economic and power inequity underpinned the complex social relationships within CAPS impacting on trial participation, perceptions of the cookstoves, and on the potential of the intervention to affect health and other benefits. Power can be understood as relational and productive within the research environment. This is illustrated by an analysis of the role of fieldworkers and community representatives who needed to negotiate resistance to trial compliance decisions, including 'satanic' rumours about cookstoves and blood-taking. Transformative approaches that challenge existing power inequities are needed to maximise the success and beneficence of cookstove and other health promoting interventions, and achievement of the SDGs.

'Cooking is for everyone?': Exploring the complexity of gendered dynamics in a cookstove intervention study in rural Malawi.

BACKGROUND: Household air pollution (HAP) resulting from cooking on open fires has been linked to considerable ill-health in women and girls, including chronic respiratory diseases, and has been identified as a contributor to climate change. It has been suggested that cleaner burning cookstoves can mitigate these risks, and that time saved through speedier cooking can lead to the economic empowerment of women. Despite these and other potential advantages of cookstoves, sustained use is difficult to achieve. OBJECTIVE: We used qualitative methods (focus groups, interviews, observation) and the participatory methodology Photovoice in order to inform a deeper understanding of gendered social relationships within the Cooking and Pneumonia Study (CAPS) in rural Malawi. METHODS: Over five CAPS villages, forty women and ten men were recruited for Photovoice activities, including image collection, village-level focus group discussion and interviews. Data were also collected from interviews with village-based community representatives. RESULTS: This study facilitated a rich exploration of context-specific gendered household roles and power relations which found that there was space for contestation in seemingly entrenched and 'traditional' household responsibilities. The results suggest that the introduction of cookstoves through CAPS provided a focus for this contestation. It was evident that men and children also cooked, and that cooking played a central role in the gendered socialisation of children. However, there were no indications that time saved resulted in the empowerment of women. CONCLUSION: Our findings suggest that dominant narratives of the links between gender and cookstoves are often reductive and fail to reflect the complexity of gender power relations. The use of qualitative methods incorporating Photovoice helped to facilitate an alternative 'bottom-up' view of cookstove use which demonstrated that while cookstoves may disrupt gendered relationships in target communities, positive impacts for women and girls cannot be assumed.

'Pneumonia has gone': exploring perceptions of health in a cookstove intervention trial in rural Malawi.

INTRODUCTION: Air pollution through cooking on open fires or inefficient cookstoves using biomass fuels has been linked with impaired lung health and with over 4 million premature deaths per annum. However, use of cleaner cookstoves is often sporadic and there are indications that longer-term health benefits are not prioritised by users. There is also limited information about how recipients of cookstoves perceive the health benefits of clean cooking interventions. We therefore conducted a qualitative study alongside the Cooking and Pneumonia Study (CAPS). METHODS: Qualitative methods and the participatory methodology Photovoice were used in an in-depth examination of health perceptions and understandings of CAPS trial participants. Fifty participants in five CAPS intervention villages collected images about cooking. These were discussed in village-level focus groups and in interviews with 12 representative participants. Village community representatives were also interviewed. Four female and eight male CAPS fieldworkers took part in gender-specific focus groups and two female and two male fieldworkers were interviewed. A thematic content approach was used for data analysis. RESULTS: We found a disconnect between locally situated perceptions of health and the biomedically focused trial model. This included the development of potentially harmful understandings such as that pneumonia was no longer a threat and potential confusion between the symptoms of pneumonia and malaria. Study participants perceived health and well-being benefits including: cookstoves saved bodily energy; quick cooking helped maintain family harmony. CONCLUSION: A deeper understanding of narratives of health within CAPS showed how context-specific perceptions of the health benefits of cookstoves were developed. This highlighted the conflicting priorities of cookstove intervention researchers and participants, and unintended and potentially harmful health understandings. The study also emphasises the importance of including qualitative explorations in similar complex interventions where potential pathways to beneficial (and harmful) effects, cannot be completely explicated through biomedical models alone.

Solid fuel users' perceptions of household solid fuel use in low- and middle-income countries: A scoping review.

Almost half of the global population is exposed to household air pollution (HAP) from the burning of biomass fuels primarily for cooking, and this has been linked with considerable mortality and morbidity. While alternative cooking technologies exist, sustained adoption of these is piecemeal, indicating that there is insufficient knowledge of understandings of HAP within target communities. To identify potential gaps in the literature, a scoping review was conducted focused on solid fuel users' perceptions of HAP and solid fuel use in low- and middle-income countries. From the initial 14,877 search returns, 56 were included for final analysis. An international multi-disciplinary workshop was convened to develop the research question; six key domains: health; family and community life; home, space, place and roles; cooking and cultural practices, environment; and policy and practice development, were also identified using a Social Ecological Model framework. The review showed a series of disconnects across the domains which highlighted the limited research on perceptions of HAP in the literature. Reviewed studies showed that participants emphasized short-term health impacts of HAP as opposed to longer-term health benefits of interventions and prioritized household security over improved ventilation. There was also a socio-demographic gendered disconnect as although women and children generally have most exposure to HAP, their decision-making power about use of solid fuels is often limited. In the domain of policy and practice, the review identified the importance of community norms and cultural traditions (including taste). Research in this domain, and within the environment domain is however limited and merits further attention. We suggest that interventions need to be locally situated and community-led and a deeper understanding of perceptions of HAP could be obtained using participatory and innovative research methods. Bridging the disconnects and gaps identified in this review is essential if the global disease burden associated with HAP is to be reduced.

Household concepts of wellbeing and the contribution of palliative care in the context of advanced cancer: A Photovoice study from Blantyre, Malawi.

INTRODUCTION: Cancer and other life-limiting non-communicable diseases are on the increase in Africa affecting younger populations frequently diagnosed at an advanced stage of disease. The United Nations Sustainable Development Goal 3 aims for 'healthy life and wellbeing for all at all ages', though there is a limited understanding of wellbeing particularly from patients' and families' perspectives in these populations. Palliative care is an approach which aims to improve the quality of life for patients and families affected by life-limiting disease, though access to palliative care has been described as an issue which is 'largely ignored' on the global health agenda. The aim of this Photovoice study was to explore patient and family perspectives of wellbeing and the contribution of palliative care following a diagnosis of advanced cancer in Blantyre, Malawi. METHODS: Between November 2016 and February 2017, 13 co-researchers (6 patients receiving palliative care for advanced cancer and 7 un-paid family caregivers) gathered photographs to depict aspects of their daily lives. Participatory analysis was conducted and an advocacy event (including photographic exhibits) held. RESULTS: Wellbeing was described as seeing improvements in the patients' function facilitating inclusion in activities of daily living (including income generation) that had not previously been possible due to their illness. Family caregivers, neighbours and community members play a key role as 'courage givers' supported by health workers and religious groups, though discrimination in the form of social exclusion was also reported to be significant with patients expressing that they may be considered 'prematurely dead' in their community. Palliative care improves wellbeing by providing pain and symptom management enabling patients and / or family caregivers to return to household and income generating tasks. Through close interaction with households and ongoing counselling palliative care services assist to reduce fear and discrimination. CONCLUSIONS: To achieve Sustainable Development Goal 3 for patients and families affected by life limiting illnesses in low resource settings, further understanding of the frequency and impact of discrimination is required as well as improved access to palliative care.

Enhanced patient research participation: a Photovoice study in Blantyre Malawi.

OBJECTIVES: Patient involvement in palliative care research is a desirable if challenging goal. Photovoice is an action research method in which affected communities gather photographs to document and discuss their communities' strengths and concerns. Engagement with policymakers is a separately stated goal. Photovoice is increasingly used in health-related research but has not been widely described in the palliative care literature. We report on experiences and lessons learnt using Photovoice in Blantyre, Malawi to encourage its wider use in research and practice. METHODS: Thirteen co-researchers (six patients and seven household carers, mean age 47 years) receiving community-based palliative care, attended nine half-day group sessions over a 4-month period. Co-researchers produced, selected and analysed photographs. On completion of data collection, they conducted an advocacy event, including a photographic exhibition, to which media representatives and community leaders were invited. RESULTS: Procedures to ensure safety of co-researchers and to obtain consent of individuals identified in the photographs were developed during the planning phase. Co-researchers engaged with the Photovoice process with enthusiasm, although frailty and physical disability (poor sight) limited participation for some older adults. Inclusion of palliative care staff within the research team helped to facilitate open dialogue and clinical review where appropriate. CONCLUSIONS: In this Photovoice study, patients and family members receiving palliative care engaged in an exploration of household well-being using photography, participatory analysis and an advocacy event. With appropriate planning, Photovoice can be adapted to a range of settings to enhance patient participation.

The Cooking and Pneumonia Study (CAPS) in Malawi: A Nested Pilot of Photovoice Participatory Research Methodology.

The Cooking and Pneumonia Study (CAPS) is a village-level randomised controlled trial of an advanced cookstove intervention to prevent pneumonia in children under the age of 5 in rural Malawi (www.capstudy.org). The trial offers a unique opportunity to gain understanding about the social and cultural factors that may facilitate sustained use of improved cookstoves. In January 2015, the use of Photovoice as a participatory research methodology was piloted at the CAPS Chikhwawa site. Photovoice is a photographic technique that allows communities (including women and marginalised groups) to share knowledge about their perspectives and priorities. Four households were given digital cameras and asked to collect images over 24-48 hours and were then interviewed on film about their selection. This resulted in over 400 images and a one hour long film that revealed community concerns and could be thematically analysed. The collection of interview data through film was useful for capturing discussion and was acceptable to participants. Photovoice is a feasible participatory research methodology that can play a valuable role in qualitative studies of improved cookstove adoption in challenging resource poor settings.