‘I feel more part of the world’: Participatory action research to develop post-diagnostic dementia support

Many people living with dementia are ‘on the margins’, not accessing services and support, despite policy and care advancements. The COVID-19 pandemic exacerbated this, with the closure of face-to-face support during lockdowns in the UK and globally. The aim of the ‘Beyond the Margins’ project was to develop, implement, and evaluate a face-face programme of support with, by and for people with direct experience of dementia who are on the margins of existing services and support. In March 2020 the project was interrupted by the outbreak of the COVID-19 pandemic and it changed to an online format. The three-phase participatory action research project included 40 people living with dementia, 26 care partners and 31 health and social care practitioners. A seven-week online personal development programme called Getting On with Life (GO) was developed, delivered, and evaluated. This paper focuses on the participatory approaches used to develop and implement the GO programme, and the resulting aspects of its approach to facilitation and content. Key features include the GO Programme’s principles of providing a safe and a respectful space, and the programme’s values of: Everyone who comes already knows things, can learn things and can teach things; Doing things ‘with’ each other, rather than ‘for’ or ‘to’ each other; Personalised goals—led by the needs of participants rather than an imposed agenda. A key finding was the importance of developing post-diagnostic programmes as a ‘sandwich’, providing a safe space for learning that is preceded by understanding pathways to access the programme and followed by explicit consideration of the next steps in increasing social engagement

Predictors of consent to cell line creation and immortalisation in a South African schizophrenia genomics study

Background Cell line immortalisation is a growing component of African genomics research and biobanking. However, little is known about the factors influencing consent to cell line creation and immortalisation in African research settings. We contribute to addressing this gap by exploring three questions in a sample of Xhosa participants recruited for a South African psychiatric genomics study: First, what proportion of participants consented to cell line storage? Second, what were predictors of this consent? Third, what questions were raised by participants during this consent process? Methods 760 Xhose people with schizophrenia and 760 controls were matched to sex, age, level of education and recruitment region. We used descriptive statistics to determine the proportion of participants who consented to cell line creation and immortalization. Logistic regression methods were used to examine the predictors of consent. Reflections from study recruiters were elicited and discussed to identify key questions raised by participants about consent. Results Approximately 40% of participants consented to cell line storage. The recruiter who sought consent was a strong predictor of participant’s consent. Participants recruited from the South African Eastern Cape (as opposed to the Western Cape), and older participants (aged between 40 and 59 years), were more likely to consent; both these groups were more likely to hold traditional Xhosa values. Neither illness (schizophrenia vs control) nor education (primary vs secondary school) were significant predictors of consent. Key questions raised by participants included two broad themes: clarification of what cell immortalisation means, and issues around individual and community benefit. Conclusions These findings provide guidance on the proportion of participants likely to consent to cell line immortalisation in genomics research in Africa, and reinforce the important and influential role that study recruiters play during seeking of this consent. Our results reinforce the cultural and contextual factors underpinning consent choices, particularly around sharing and reciprocity. Finally, these results provide support for the growing literature challenging the stigmatizing perception that people with severe mental illness are overly vulnerable as a target group for heath research and specifically genomics studies

The behaviours that dementia care home staff in South Africa find challenging:An exploratory study

Background: Behavioural and psychological symptoms of dementia are often the reasons for moving to a care home. Care staff, often with limited dementia training, may have to support residents with distressed behaviour on a daily basis. Evidence about the support of residents with distressed or challenging behaviour in the South African context is lacking. This exploratory study aimed to gain an understanding of what care home staff perceived to be distressed behaviour, their coping strategies and how they learned to work with residents with behavioural symptoms of dementia. Methods: An exploratory study was conducted among 17 participants working in four care homes in the Western Cape province of South Africa in 2014. Semi-structured interviews were audio-recorded. Data were analysed thematically. Findings: Findings reflected the literature with regard to examples of behavioural symptoms of people with dementia that staff find challenging to manage. Overall, the majority of staff reported holding positive feelings about working with people with dementia. All preferred interpersonal approaches to manage distressed behaviour above medication although a small minority noted the use of medication in some cases. Dementia training was considered by most participants as an unmet need. Conclusion: This exploratory study identified care home workers’ desires for training about dementia and their preferences for interpersonal as opposed to pharmacological approaches to managing residents’ distressed behaviour. The legacy of race and cultural perspectives in South Africa appears to still influence care practice and provision. Staff commitment, their interest in advancing their practice and their aspirations to offer more person-centred care were evident. Dementia training was identified as potentially helpful to care home staff who manage residents’ distressed behaviour. Training should be developed in South Africa to promote good practice

The experiences of people with dementia and their care partners: voices from an ethnically diverse sample in the Eden District of South Africa

This thesis explores the experiences of an ethnically diverse sample of persons with dementia (PWDs) and their care partners (CPs) in the Eden District of South Africa. The study is theoretically grounded in symbolic interactionism (Blumer, 1969) and uses the Constructivist Grounded Theory method (Charmaz, 2014) to interrogate how dementia impacts on the relationships between PWDs and CPs. This was done through considering the mechanisms of reciprocity and social connectedness. It further used concepts from the Social Exchange Theory (Homans, 1958), Convoy Model of Social Relations (Kahn & Antonucci, 1980), and the Convoy of Care Model (Kemp et al., 2012) to interpret the findings. For the past few decades, qualitative dementia research reflected mostly the perspectives of CPs and later that of PWDs. Contemporary studies have seen a shift towards examining the impact of dementia on the social and care exchanges that take place between the PWDs and those who support them. This study broadens the existing body of evidence by including the perspectives of an ethnically diverse sample of PWDs and CPs. It specifically examines participants’ views on how dementia transformed their interpersonal relationships. Participants described a progression on the continuum between social connection at first and social disconnect when the dementia became more challenging in its later stages. Up to four repeated interviews were conducted with 18 PWDs and 30 CPs from Coloured, Black African, and White backgrounds. Following verbatim transcriptions and thematic analyses of 103 qualitative interviews, the themes of relationships and social connection emerged as central to participants’ experiences. The findings suggested that the combined effect of four factors, namely care practice (collectivist/individualist), relationship type (exchange or communal), attitude toward exchange (exchange or non-exchange), and predominant type of reciprocity (generalised/balanced), along with disease progression, determined where the PWDs were on the continuum with socially connected at one end and socially disconnected at the other. Overall, a combination of collectivist care practices, a communal relationship type, a non-exchange orientation to social exchanges, and generalised reciprocity were deemed optimal, resulting in a slower progression on the continuum. In this sample, the care convoys of Coloured participants were on average larger than for White participants. The sample of Black African participants was too small to compare with the other groups. Positive relationships and larger social convoys appeared to result in better psychosocial outcomes for both PWDs and their CPs. Further research is needed to test if this continuum also reflects the lived experiences of PWDs in the nine Black African ethnic groups of South Africa. A sample that is more representative of this socio-economic background can provide further insight into possible intergroup differences

Additional file 1: of Predictors of consent to cell line creation and immortalisation in a South African schizophrenia genomics study

Database. The original database used for analysis in this manuscript. (XLSX 66 kb