Illness and impairment: individual experiences and impact

Since its inception in the mid 1970’s SPRU has always had a stream of work related to individuals' experiences of illness and impairment. Including those of carers or other family members.  It is an area of work which can be methodologically challenging, but is essential. Often our projects are the first to have explored a particular topic.   

Current / recently completed research

Disability, care and participation: secondary analysis of the Life Opportunities Survey and the 2009/10 Survey of Carers in HouseholdsMarch 2015 - August 2016

This project is reanalysing data from three national surveys of caring and of impairment and disability.

The SIgN project: self-funders and information needsFebruary 2015 - October 2016

This project will produce a short film and leaflet to help people looking for care and support as they get older.

A systematic scoping review of research prioritisation exercises relevant to children and young people with life-limiting conditionsJanuary 2017 - September 2017

This review is part of the early priority-setting work by the Martin House Research Centre. The results will contribute to the Centre’s decisions regarding the focus of its work.

Completed research

Children in Scotland requiring palliative care: identifying numbers and needs (ChiSP)May 2014 - September 2015

The purpose of this project is to identify those children and young people who may be affected with life-limiting conditions and discover what their needs are.

Living with inflammatory bowel disease: the experiences of adults of South Asian origin (the LISA project)November 2012 - May 2014

The primary aims of the study are to describe what living with Inflammatory Bowel Disease is like for South Asian adults, including their experiences as health service users, and to understand whether ethnicity impacts on this experience and, if so, how.

Parents' experiences of being responsible for painful procedures (the PEAPIP project)May 2014 - October 2015

Parents' experiences of administering painful and invasive nursing procedures as part of caring for their ill child at home. The purpose of this study is to explore and better understand these issues.

The personal is political: women's experience of dementiaJanuary 2014 - September 2015

Dementia is an issue that disproportionately affects women. Little is known about the particular experiences of women living with or caring for people with dementia, particularly in respect of issues such as power, control, choice and influence. This project aims to address this gendered gap in evidence by consulting women and using their stories to change the tenor of policy and practice debates and to adjust the focus of future research

The personal is political: women's experience of dementiaApril 2014 - April 2015

White Rose is a three university consortium that fosters joint working across the universities of Leeds, York and Sheffield. White Rose is supporting a collaboration in 'dementia, cognition and care' through 2014 and into 2015. Using this support, we created a virtual centre for dementia care research, which involved researchers from the three universities, in partnership with dementia practitioners and people living with the condition.

The STEPP project: supporting health transitions for young people with life-limiting conditions April 2010 - August 2013

This research address a key gap in evidence on health care transitions by focusing particularly on young adults' experience of adult health care, as well as parental involvement in decision-making in adult health care settings.

Social, economic and health impacts of WaveLength's work with loneliness and isolationMay 2015 - August 2015

The overarching aim of the project is to understand the ways and means through which media technology contributes to reducing loneliness and social isolation among vulnerable groups. The project will seek to understand what difference the technologies provided by WaveLength have made in different domains of an individual’s life – including emotional, social and economic – contributing to their overall sense of wellbeing and ‘connectedness’.

Loneliness and social isolation among older people in rural North YorkshireNovember 2012 - September 2013

This piece of work builds on a survey about loneliness and social isolation among older people in rural North Yorkshire, carried out by North Yorkshire Older People's Partnership Board (NYOPPB) in 2009.

Supporting carers of people with dementiaJuly 2012 - June 2013

The project will look at the increasing numbers of people who live with impaired cognition or communication. These groups have traditionally been without a ‘voice’ in research about their lives and needs, particularly in health services research.

Scoping review of research on interventions to support carersAugust 2009 - January 2010

The study comprises a scoping review of the research literature on carers; the findings are intended to inform policy and practice for carers, as well as identifying future research areas.

Care provision within families and its socio-economic impact on care providersMarch 2008 - December 2008

This project aims to identify research evidence on the prevalence of and socio-economic consequences for, carers of older people and of other groups of disabled peopleand design a benchmarking system, based on these factors.

Evaluation of 'Life Story' intervention: Feasibility studyJuly 2012 - March 2015

Everybody has a life story. These are rich and varied and can be used to communicate who we are to the people around us. People with dementia sometimes need help to communicate their histories and identities, and 'life story work' might provide a way for them to do this more easily.