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

Understanding and using experiences of dementia to develop a Socialcaretalk section for public, policy, educators and service providersMay 2022 - February 2024

What matters most to people with dementia? The understanding and using experiences of dementia project will develop and produce a Socialcaretalk section for the public, policymakers, educators and service providers, that tells people's stories about what worked for them.

Development of a decision support tool for older people who pay for social care, and their familiesJune 2021 - May 2023

In this study we will create a decision support tool that aims to help older people make decisions about paying for social care.

Supporting the complete care of children and young people with life-threatening or life-shortening conditions, and their familiesAugust 2020 - September 2022

The aim of this study is to gather evidence the NHS and children's hospices can use to guide how they meet the pastoral, spiritual and religious needs of children and young people living with a life-threatening or life-shortening condition, and their families.

Finding and funding social care: a qualitative study of the experiences of self-fundersSeptember 2019 - February 2021

The purpose of this project is to understand self-funders' experiences of finding and funding social care, and create an online resource of peer experiences.

Parents' stories of their children's lives: a follow-on study of QUEST parentsMay 2019 - March 2021

The purpose of this study is to understand the factors that influence the mental health and well-being of teenagers on the autism spectrum.

DETERMIND: Determinants of quality of life, care and costs, and consequences of inequalities in people with dementia and their family carersJanuary 2019 - December 2023

DETERMIND is designed to address critical, fundamental, and as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia.

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.

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.

The Making Sense? study: how do parents and young adults with Autistic Spectrum Disorders make sense of behaviour problems and mental health difficulties?September 2014 - April 2019

This study is exploring how young adults with Asperger syndrome, and parents of children with autism, understand and make sense of emotional and behavioural difficulties.

Completed research

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’.

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.

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.

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 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

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.

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.

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.

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.

The STEPP project: supporting health transitions for young people with life-limiting conditionsApril 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.

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.