A systematic review and narrative synthesis of the experiences with caring for older people living with dementia in Sub-Saharan Africa.

BACKGROUND: In low- and middle-income countries, including sub-Saharan Africa little is known about the experiences with caring for people living with dementia. The purpose of this systematic review and narrative synthesis was to examine the experiences with caring for older people living with dementia at home. RESULTS: In total, 366 abstracts were identified and following screening, 19 studies were included in the synthesis. Six themes were identified: conceptualising dementia, caregiving arrangements, the impact of caregiving, caregiver identity and role, managing caregiving, unmet caregiver needs. CONCLUSION: There is a dearth of research in relation to caregiving for older people living with dementia in sub-Saharan Africa. There is need for better information campaigns and support programs directed at family and professional caregivers in this context.

Female genital mutilation and male involvement: Insights of men and women in two counties in Kenya.

This qualitative study, conducted in Meru and Kajiado counties in Kenya, explored the perceptions and attitudes of men and women regarding male involvement in FGM in order to inform the design of male involvement strategies in FGM abandonment. We used focus group discussions to collect the data which was then subjected to thematic analysis. Three main themes emerged from the data: i) culture and the role of men; ii) perceived awareness and knowledge of FGM among men, and iii) credible and customised education and engagement. The study found widespread agreement on the importance of male involvement in FGM abandonment. Culture played an important role in determining the extent of involvement, or lack thereof. We conclude that while culture needs to be respected it ought to be challenged to avoid the continued harm to girls. The potential of men as a collective to bring about change was evident, and policy makers and NGOs should utilise the power of male collectives to support efforts to abandon FGM.

Female genital mutilation and male involvement: Insights of men and women in two counties in Kenya

This qualitative study, conducted in Meru and Kajiado counties in Kenya, explored the perceptions and attitudes of men and women regarding male involvement in FGM in order to inform the design of male involvement strategies in FGM abandonment. We used focus group discussions to collect the data which was then subjected to thematic analysis. Three main themes emerged from the data: i) culture and the role of men; ii) perceived awareness and knowledge of FGM among men, and iii) credible and customised education and engagement. The study found widespread agreement on the importance of male involvement in FGM abandonment. Culture played an important role in determining the extent of involvement, or lack thereof. We conclude that while culture needs to be respected it ought to be challenged to avoid the continued harm to girls. The potential of men as a collective to bring about change was evident, and policy makers and NGOs should utilise the power of male collectives to support efforts to abandon FGM

'It is stressful, almost every hour ': Experiences of caring for people living with dementia in Kenya-An interpretive phenomenological approach.

INTRODUCTION: As chronic conditions such as dementia become increasingly prevalent, the role of caregivers will become ever more critical. In the East African region, little is known about the experiences of caring for people living with dementia. This study aims to describe the views of being a caregiver, including day-to-day responsibilities and duties, determine the impact of caregiving and understand participants' experiences of supports available or required to facilitate caring for a person living with dementia in Kenya. METHODS: This was a qualitative study that employed an interpretative phenomenological analysis (IPA) approach. We used convenience sampling to identify study participants in three counties in Kenya. Participants were main caregivers for the family and hence included both families and paid caregivers. We recruited 10 caregivers to participate in the study (9 females and 1 male). Data were analysed manually following the IPA approach. RESULTS: Three main themes emerged from the analysis: the personal experience of caregiving, supports to assist with caregiving and the perceived unmet care needs. The challenges experienced varied based on the support available to the caregiver, the number of years in the caregiving role and knowledge and skills related to providing care. CONCLUSION: Our study shows that caring for a person living with dementia is an arduous experience, requiring significant mental and physical effort. The study highlights a general lack of knowledge and awareness of dementia among families, healthcare professionals and the general public. Training programmes for caregivers, including dementia care skills, educating healthcare practitioners and organising public awareness programmes to understand and accept dementia are urgently needed.

Minding the gap: identifying values to enable public and patient involvement at the pre-commencement stage of research projects.

BACKGROUND: The University College Dublin (UCD) Public and Patient Invovlement (PPI) ignite program is focused on embedding PPI in health and social care related research, education and training, professional practice and administration. During a PPI knowledge sharing event challenges were noted during the pre-commencement stage of research projects. This stage includes the time before a research projects/partnership starts or when funding is being applied for. As a response, we agreed there was a need to spend time developing a values-based approach to be used from the pre-commencement of PPI projects and partnerships. Values are deeply held ideals that people consider to be important. They are vital in shaping our attitudes and motivating our choices and behaviours. METHODS: Using independent facilitators, we invited a diverse group of participants to a full-day workshop in February. During the workshop, the concept of a values statement and values-based approaches was introduced. The group via a majority consensus, agreed on a core set of values and a shared understanding of them. After the workshop, a draft was shared with participants for further comment and final agreement. RESULTS: The workshop had 22 people representing experts by experience, PPI charity partners, funders, academics and national PPI Ignite partners. The group via consensus identified four values of respect, openness, reciprocity and flexibility for the pre-commencement stage. A frequently reported experience of PPI partners was that some felt that the pre-commencement activities appeared at times like a performance; an act that had to be completed in order to move to the next stage rather than a genuine interest in a mutually beneficial partnership. Being open and transparent with all invovled that the funding application may not be successful was stressed. Another important feature related to 'openness' was the 'spaces' and 'places' in which meetings between partners could occur in an accessible and equitable way. The issue of 'space' is particularly critical for the involvement of seldom heard groups. The benefits of the research are often clear for academics, but for PPI partners, these are often less certain. To achieve reciprocity, academic and PPI partners need to engage in a timely, repeated and transparent dialogue to achieve beneficial outcomes for all stakeholders. Being open to new inputs and differing modes of knowledge and ideas was also stressed. For some, this will require a change in attitudes and behaviours and should result in more collective decision making. Several areas were identified using the four values. CONCLUSIONS: This work via majority consensus identified four values of respect, openness, reciprocity, and flexibility for the pre-commencement stage. These values should be used to support inclusive, effective and collective PPI across all stages of involvement. We hope this work will stimulate further action in this area. In particular, we would welcome the evaluation of these values involving diverse PPI groups.

"Promote locally led initiatives to fight female genital mutilation/cutting (FGM/C)" lessons from anti-FGM/C advocates in rural Kenya.

BACKGROUND: Female Genital Mutilation/cutting (FGM/C) is a tradition rooted in culture and involves the partial or total removal or other injury to the female genital organs for non-medical reasons. In Kenya, initiatives to abandon the practice have included 'alternative' ritualistic programmes (ARPs) combined with intensive community sensitisation about FGM/C to achieve attitudinal and behavioural changes. While there are indications of the effectiveness of these interventions, FGM/C continues to be practiced within certain groups in Kenya. This study explored the views of anti-FGM/C advocates on the barriers and facilitators to tackling FGM/C within the Meru community in Kenya. METHODS: Data were obtained using 4 Focus Groups (FGs) with 30 anti-FGM/C advocates from Tigania East and West in Meru county. Thematic framework analysis guided the analysis based on four main questions: 1) How has the cultural meaning of FGM/C evolved over time? 2) What are the perceptions in relation to the effectiveness of anti-FGM/C interventions? 3) How effective are interventions and campaigns to end FGM/C in Meru county? 4) What actions are perceived as the most likely to bring about change? RESULTS: There has been a substantial shift in the culture of FGM/C and the number of families carrying out the practice in Meru county has decreased in recent years. Participants noted five actions likely to bring about change; 1) reviving and supporting ARPs, 2) encouraging fathers' involvement in the upbringing of their daughters,3) inclusion of the topic of FGM/C in the current education curriculum and public fora, 4) strengthening the community policing strategy -Nyumba Kumi, 5) and setting up community centers for orphans. CONCLUSION: Our findings demonstrate the significance of locally led initiatives to fight FGM/C. It also became clear that change would have to start at the family level with parents, particularly fathers, taking on a more active role in the lives of their daughters. Providing education about FGM/C to communities, particularly young men coupled with keeping girls in school appeared to be some of the most effective ways of fighting FGM/C. At the community level, the church became particularly crucial in challenging the practice of FGM/C.

What contextual factors and mechanisms facilitate male involvement in women's sexual and reproductive health in Sub-Saharan Africa? A rapid realist review protocol.

Background:  Sexual and reproductive health (SRH) outcomes of women within low resource contexts continue to be of concern to policymakers. Notably, sub-Saharan Africa (SSA) continues to lag behind other regions of the world in improving SRH outcomes for women in the region. A key suggested strategy is male involvement through interventions that respect, promote and facilitate women in taking care of themselves and their new-borns. However, factors such as social-cultural barriers may preclude men's involvement in these programmes. There is a need for a context-specific understanding of gender dynamics and interaction and the mechanisms that enhance or impede men's involvement. Methods: We will employ a rapid realist review (RRR) methodology to examine what mechanisms and contextual factors are essential to facilitate the involvement of men in women's SRH programmes in SSA. In keeping with the realist literature we will follow six steps, which will include: (1) developing a theory, (2) developing a search strategy, (3) selecting and appraising documents, (4) extracting data, (5) analysing data and synthesising the evidence, and (6) presenting and disseminating a revised theory. We will also engage with key stakeholders who will provide local contextual insights and with experts in the subject area. The review findings will be shared with relevant stakeholders using a variety of avenues including through publications, at conferences and on social media platforms. Discussion: This review will identify the mechanisms and contextual factors that facilitate or hinder men's involvement in women's SRH programmes in SSA. The rationale for adopting an RRR approach is to help gather the information within a relatively short period to ensure relevance of findings to policymakers in SSA. Results from this work also have the potential to be adapted to the other contexts, for example, Ireland and the UK, which have a growing population of people from SSA.