Preliminary Programme

Objectives: This study examined the experiences of older parents who provide long-term care for their adult children with learning disabilities and how they conceptualise their quality of life.
Method: Data were collected using semi-structured interviews with 27 older parent carers from four London boroughs and were analysed using framework technique.
Findings: Findings indicate benefits as well as challenges. Most participants appraised their quality of life positively, despite the challenges they had to negotiate on a daily basis. They reported rewards and benefits from caregiving, more so in later life, such as: a connected family from shared caregiving; having a sense of belonging; purposeful living; a reciprocal relationship with their adult children; and personal transformations from providing care which improved their quality of life.
The challenges that participants regularly encountered were: the added stress of the government’s Personalisation Agenda of caring services (particularly through direct payments); struggles for access to services; multiple losses (sleep, career, identity and friends); worry about future care; fear of abuse when carers are unable to continue in their role; unhelpful attitudes of health and social care professionals; and a lack of empathy from friends as well as the public towards people with learning disabilities.
Conclusion: The findings indicate that caregiving and quality of life are inextricably linked. The difficulties that parent carers experienced were mainly associated with socio-structural barriers, rather than their children’s disabilities. Importantly, the findings inform the practice of social workers and others who support this unique group of carers by providing new insights into how caring impacts on quality of life and how best these parents’ needs can be met. This study makes a specific contribution to understanding the phenomenological realities of older carers and extends current conceptualisations of quality of life among older people. (Show less)

Few studies have investigated family formation among people with disabilities. Available evidence on disability and family formation shows people with disabilities to have a low propensity of finding a life partner, those that succeed do so later in life compared to the general population. Moreover, people with disabilities have a higher risk of separation and divorce compared to those without disabilities, although some studies have contrasted these findings. There is a general lack of investigations on how family formation among people with disability has changed in recent decades. Important to note, there is scanty of evidence of how the situation of disability and family formation looks like in Sweden today.
Using a life-course perspective, this study investigates the impact of disability on family formation and assesses whether this effect varies, as a function of demographic and socio-economic characteristics. We apply statistical life course techniques such as Cox regression and sequence analysis to perform this investigation. Our study uses data with national wide coverage available in the Swedish Initiative for Research on Microdata in Social and Medical Sciences (Umeå SIMSAM Lab). We follow-up the life courses of persons born in 1973-1977, from age 16 up to 37 years, which is in 1990 and 2010, comparisons are made between people with disabilities and those without disability. Our findings will indicate whether there are differences in partnership and reproduction between people with disabilities and those without disabilities. In addition, our findings will clarify the role of demographic and socio-economic factors on the relationship between disability and family formation. This evidence will suggest direction of future research on disability and family formation and; possibly inform social institutions on ways to improve the lives of people with disability. (Show less)

We now know a considerable amount about the lives of parents who have a learning disability and the children they care for. With the right support, many such parents can nurture their children in the context of a stable family household. Almost all research in this field focuses on and reflects the experiences of mothers. To our knowledge, this is only the second empirical study that have focused on the voices of fathers with learning disabilities themselves.

This paper will present the findings from a 12 month study about the lives of fathers with learning disabilities conducted at the University of Bristol and funded by the School for Social Care Research. Interviews were held with 8 fathers from different parts of England and 9 practitioners from learning disability services in three local authorities.

Fathers in the study shared experiences of pride in being a father, and everyday stresses of being a parent. For some, this resulted in serious mental illness. However, support services tended to focus on providing practical support to the fathers and emotional and practical support to the mother. Fathers in this study were rarely engaged as parents themselves.

This presentation will draw on interviews from fathers and practitioners to consider the experiences of the fathers themselves and those of practitioners working in adult learning disability services. It will consider factors associated with examples of good practice and where gaps continue to exist in recognising the needs of fathers with learning disabilities and how they can make positive contributions to the lives of their children. (Show less)

Historically, marriage was the aim of most young people. Having a partner and family still signify the transition to adulthood and constitute one key to be recognized as a ‘real’ man or woman. Present-day studies suggest that disability makes people more likely to live without a partner than the ‘able’ majority. As for past society, data on disabled people’s lives are limited due to poor or biased documentation in historical sources.
This study’s purpose is to identify how disability manifested itself in individuals’ transition to marriage during the 19th century represented by the Sundsvall region in northern Sweden. Parish registers digitized by the Demographic Data Base, Umeå University, provide exceptional micro- data on the lives of some 25,000 individuals and with regards to impairments. First, we conduct Cox regression models and find that disability negatively affected the marital chances. Second, sequence analysis helps us to further detect how disability shaped people’s trajectories toward work, marriage and childbearing during adulthood. Comparisons are consistently made between different disabilities, the genders and other demographic features using a reference group of non-disabled persons. Third, we take a closer look at the disabled men and women who married to picture their partner and find evidence to whether any spouse selection governed these unions.
This is one of the first analysis comprising a substantially large number of cases to obtain quantitative life course findings on the impact of disability. Our results show that it significantly impeded people’s transition to marriage in the past but with variations across different disabilities and genders. Theoretically, we view the marital prospects and spouse characteristics as indicative for the level of inclusion of individuals in social life and society on the basis of disability (Show less)