The experience of being a father of a son or daughter with an intellectual disability: older fathers’ perspectives

Background: As life expectancy for people with an intellectual disability increases, there is a growing cohort of older father carers. This study aimed to gain a more in‐depth understanding of older father carers’ experiences of parenting. Methods: Semi‐structured interviews were conducted with 7 older fathers (M = 63.9 years) and analysed using constructivist grounded theory. Results: Three conceptual categories were identified. “Wearing different hats: how fathers’ sense of identity had altered over the years. “Family comes first”: importance placed on the family unit. “Getting on in years”: the challenges faced by ageing fathers parenting their son/daughter. Conclusions: Fathers re‐evaluated their priorities and found a new identity in their parenting role, although they continued to see themselves as secondary carers. Fathers worried about the future as their health declined but drew strength from the benefits they had derived and the challenges that they had overcome to do their best for their son/daughter and their family

The development and validation of the Dementia Quality of Life Scale for Older Family Carers (DQoL-OC)

Purpose: Little is known about how caregiving affects the quality of life (QoL) of older family carers and no dementia and age-specific QoL scale is available for use with this population. This study aimed to develop and validate a unique dementia caregiving- and age-specific tool – the ‘Dementia Quality of Life Scale for Older Family Carers’ (DQoL-OC). Methods: The scale items were identified in focus groups with older family carers in the UK. Content and face validity were evaluated by a panel of six experts. A set of 100 items assessed on a 5-point Likert scale was tested with 182 older family carers. Test–re-test reliability was conducted with 18 individuals. Exploratory factor analysis was used to identify the QoL model and reduce the number of scale items. Convergent construct validity and internal consistency were also established. Results: A one-factor solution containing 22 items was obtained. Test–re-test reliability (lower bound r = 0.835; p < 0.001), internal consistency (Cronbach's α = 0.936), and convergent construct validity were established. Significantly lower levels of QoL were found in female older carers; those who perceived their relatives with dementia as being at the earlier stages of the disease and with unstable dementia symptoms; those providing care more hours per day and more days per week; and those in younger-old age. Conclusions: The DQoL-OC is a valid and reliable scale that will be useful for research and in clinical practice with older family carers of people with dementia. These study results will inform future health and social care aiming to improve life quality for this overlooked population of carers

A Social Capital Approach to Understanding Community Resilience during the Covid-19 Pandemic

As the world begins to take stock of the impact of Covid-19, this paper provides a critical review of the role of mutual aid groups in the UK community response. Drawing on inter-views with community members and selective case studies, this position paper considers what forms of social capital impact on availability of mutual aid support in the community response to Covid-19. Based on our own experiences and Covid-19 specific research, we found that communities with social capital have been among the most organised in providing formal mutual aid, and sometimes this has extended to supporting the more marginalised and disadvantaged communities. The phenomenon of collective resilience in the pandemic, and in particular the activities of mutual aid groups as described in this paper, testify to the relevance of key concepts in social and community psychology. Without psychological ‘groupness’ there would be no adaptive community response. Further research is needed to better understand the role that social capital played in both the individual and community resilience of those offering and receiving mutual aid. This is of particular importance, given that communities lacking social capital are more vulnerable to social exclusion, in a global context where societal inequalities are widening. Whilst appreciating the limitations of social capital (particularly that it does not explain the new group relationships and forms of solidarity that have emerged), we argue that developing social capital, particularly bridging and linking social capital, can help to build community resilience and promote inclusions in communities bearing the collective economic and societal burden of the pandemic

Problematising carer identification: A narrative study with older partner's providing end-of-life care

Internationally health and social care policies have increasingly promoted carer selfidentification as the best way to target and support people in caring roles.There has been remarkably little research concerning how people adopt the identity. This paper explores the carer identification practices of older partners providing end-of-life care. A narrative interview study comprising 41 interviews with 20 participants from 17 couples were conducted between in August 2018–August 2019 in the United Kingdom.This paper coins the term carering to denote the co-constructive practices of policy makers, researchers and broader cultural narratives calling forth the carer identity and the unfolding practices of people interacting with the carer identity in relation to their sense of self.Through three narrative case studies, this paper captures the diversity of older partners carering with three categories defined as engaged, ambivalent and disengaged carering.The carer identity was only taken-up when participants felt that the qualities assigned to being a carer, such as experiencing social isolation and providing 24/7 care, reflected their own personal experience. Given that not every older partner wants to, or will, selfidentify as a carer, this paper suggests that carer selfidentification should not be the only strategy to identify and support people involved in caring. Qualitative health researchers also need to be reflexive in their use of the carer identity when studying caring-related topics

Неравенство социальной нагрузки: особенности социально-экономического положения населения, испытывающего "сэндвич-синдром"

In this paper, a study of the socio-economic situation of persons experiencing "sandwich syndrome" is carried out. The work includes a critical analysis of the literature on the impact of the "sandwich syndrome" on various aspects of human life, as well as an empirical analysis of the prevalence, demographic and socio-economic characteristics of the "sandwich syndrome" in Russia

“Same but different”: A visual ethnography of the everyday lives of siblings with autistic children in South Korea

This study explores the ordinary daily lives of siblings of autistic children in South Korea and draws on four theoretical perspectives: social psychological, young carers, the new sociology of childhood and cross-cultural. Building on knowledge of sibling’s of autistic and other disabled children in western context, I used techniques of visual ethnography to extend understanding of the everyday lives of children with autistic siblings. Nine children, aged between aged 7 and 15, in two South Korean cities were given cameras to make 'video diaries' and 'home movies' over a two week period. This was followed by reviewing sessions with the researcher to discuss the films and invitations to prepare further, age appropriate, visual representations of family life. Interviews were also held with nine mothers and two fathers to elicit their understandings of the expectations and experiences of the child participants. Despite the modernising effects of globalisation in South Korea, the values and normative expectations of Confucian familism still provided firm foundations for family life and family expectations. Reflected by limited support from the State or voluntary organisations, the children carried important responsibilities for their autistic siblings. Important insights into their ordinary daily lives included: i) 'sacrifice' as a key part of the fulfilment of filial obligation across the life span, ii) children conceptualized their relationships with their autistic siblings as 'same but different' from those of other children; iii) the children and their autistic siblings developed 'Jeong' (strong interpersonal ties) and 'Woori’ (togetherness) that are typical of sibling relationships in Korea, iv) high value was placed on 'harmonious family life' with significant implications for the siblings' daily lives, v) autism was integrated as part of everyday life despite experiences of stigmatising attitudes and vi) invisible vulnerabilities were reinforced by the strength of traditional expectations that discouraged consideration of die 'costs' of’ being a good sibling’. The voices and world views of the children in this study lead to the conclusion that Confucian familist values represent a source of strength as well as challenges for the siblings of autistic children in South Korea

Embodying 'active' ageing: bodies, emotions and risk in later life

The promotion of 'active' ageing in later life has been a key development in recent health policy. These changes not only challenge the prevalent view of old age as an inevitable process of biological decline but signify the tendency of lay and expert discourses to increasingly use the notion of risk. Older people's social identities also need to be negotiated in the context of positive (active/freedom/fluid) and negative (passive/dependence/decline) images of ageing. This thesis explored older people's social identities; meanings about lifestyles, emotions, and bodies; and the salience and limitations to 'risk' and 'reflexivity' within everyday life. The research involved the intersection of in-depth qualitative interviews with photo-elicitation with 50 men and women aged between 50 and 96 years. Thematic analysis using Atlas Ti was undertaken. Three interconnected themes emerged: 1) Participants experienced their bodies as a taken-for- granted aspect of their everyday lives until moments when an awareness of the body interrupted their daily activities. At these moments the everyday visibility of the body was heightened and participants reflected on their own meanings and identities about ageing. 2) Emotions were significant as participants described their everyday lives and social interactions. There was a continual tension between inner (private) subjective feelings and experiences of emotions and the outer (public) bodily and spatial expression of these emotions. 3) Reflexive meanings about risk were multifaceted as participants drew upon diverse discourses when making choices about health-related lifestyles. A sense of embodied vulnerability associated with ageing was evident. Meanings and perspectives associated with ageing bodies were therefore central to everyday experiences of growing older. Alternative images of ageing were intertwined within the accounts of the participants as they fluctuated between a sense of ageing as a time of possibilities and a heightened awareness of their embodied vulnerabilities

Positive adaptation to Dementia: A Realist Evaluation of family carers’ journey towards Resilience

Background: Prevalence of dementia and especially Alzheimer’s disease (AD) is increasing exponentially, both in the U.K. and more globally. Reliance on family carers of people living with AD (FCOPWA) to provide the backbone of care remains critical and continued reliance on such carers also represents current governmental policy. However, carers are vulnerable to salient health inequalities and chronic variable stress in particular as a direct consequence of taking on the carer role. The numbers of those family carers whose own health and wellbeing might be affected has reached unprecedented levels which are set to increase further in future. Aims: This study therefore aims to investigate ways in which FCOPWA can be optimally supported to maintain and sustain family care over the course of the AD trajectory. Research questions: ‘What works’ ‘when’ and ‘in what circumstances’ to enable the FCOPWA?’ Design: this study adopted a scientific realist methodology to identify ‘generative mechanisms’ which support the long-term maintenance and sustenance of FCOPWA. A rapid realist review (RRR) is employed to investigate a comprehensive range of candidates for ‘what enables the FCOPWA,’ draw up a new conceptual framework based on ‘what works’ and formulate candidate Program Theories (CPTs) to be empirically tested. Testing comprised eighteen in-depth interviews with family carers to gather data which could be analysed to further investigate the CPTs. This led to the establishment of more specific and narrowly defined Program Theories (PTs). Findings: Five PTs emerged, presenting an adaptive carer pathway covering the three main stages of the AD trajectory. This adaptive pathway was underpinned by resilience as a key mechanism and facilitated by the adaptive and differentiated employment of a range of problem and emotion-focused coping approaches and strategies. Hope was also found to provide a pivotal positive and motivating influence throughout the FCOPWA. The pathway offered a way to promote the sustainability of FCOPWA. Conclusions: The adaptive pathway outlined by this study may also prove useful in similar adult care contexts beyond AD and dementia. Additionally, the three main emergent strands: resilience, coping and salutogenesis might be usefully combined to represent an alternative paradigm to the traditional Medical model as part of the solution to the burgeoning question of how diseases which are chronic and life-limiting but not life-threatening such as dementia, but also other diseases with similar criteria, can be better served and supported in future by health and social care system