Developing guidance on providing psychoeducation after an autism diagnosis1 March 2021 - 31 June 2021

This is a short piece of work commissioned by NHS England arising directly from previous research we have done on specialist provision for autistic adults (the SHAPE project). This identified the importance of high quality, extended psychoeducation following a diagnosis of autism. In this new project we are working with expert groups to develop guidance on providing group-delivered, psychoeducation for autistic adults.

The preferences of older self-funders navigating community social care (the PRESENCE study)January 2020 - December 2021

Investigating the preferences and decisions of older self-funders of community social care as they navigate the system.

Scoping the evidence on the use and effectiveness of decision aids in adult social careDecember 2019 - March 2020

This study will assess the research evidence about, and current availability of, online decision aids in adult social care

Helping older people to engage effectively with community social care (The HOPES study)September 2019 - February 2021

This study aims to understand how support workers help older adults with mental health needs to accept and receive social care.

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.

Care Leavers' Transition into the Labour Market in EnglandMarch 2019 - August 2020

Using linked national datasets and interviews with stakeholders, this research explores factors and trajectories contributing to employability for care leavers.

Implementing the Person-Centred Community Care Inventory (PERCCI) as a measure for quality in social care servicesJanuary 2019 - August 2019

How can we translate a person-centredness score into something meaningful for understanding service quality?

The Early Days Project: parents’ experiences of the early days of bereavement and the support they receive from children’s hospicesMay 2018 - December 2020

This project is about parents’ experiences of the very early days of bereavement and how the support receiving during those early days affects longer-term grief processes and outcomes.

Developing new veteran housing in Kent: An investigation of needs and optionsMarch 2017 - May 2017

This piece of work will investigate the needs and options for the development of new veteran housing in Kent. The aim of the research is to inform development of any future housing for veterans in Kent.

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.

Independent financial advice about funding social care in later life – a project exploring evidence and practiceNovember 2016 – December 2017

This study explored existing research and current practice regarding independent financial advice about funding social care in older age.

The THINC project: therapy interventions for children with neurodisability - a scoping study of current practice and perceived research needsMay 2016 - February 2017

This scoping study will be used to inform future research into physical, occupational and speech and language therapy support used by children with neurodisabilities.

Pharmacological and non-pharmacological interventions for non-respiratory sleep disturbances in children with neurodevelopmental disorders: a systematic reviewFebruary 2016 - January 2017

Many children with neurodisabilities experience sleep problems: this project is reviewing existing evidence on the effectiveness of the different ways sleep difficulties may be managed.

Workplace Personal Assistants: exploring the role of workplace personal assistants for physically disabled peopleJanuary 2016 - September 2017

An exploration of the role of workplace personal assistants and their relationships with disabled people and colleagues.

Children's WorldsJanuary 2016 - December 2018

International comparative school based survey of eight, ten and twelve year old children’s subjective well-being in 2017.

Specialist nursing support for unpaid carers of people with dementiaNovember 2015 - July 2017

This project is evaluating a specialist support service for the carers of people with dementia.

The IRIS project: Improving Rehabilitation for People with Impaired SightSeptember 2015 - May 2018

The project examines the effectiveness and cost-effectiveness of two types of community-based vision rehabilitation services funded by LAs in England.

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’.

Evaluation of Tameside Cultural Arts Pilot ProjectApril 2015 - September 2016

Tameside Metropolitan Borough Council’s (TMBC) public health team is currently undertaking a pilot project around the use of cultural arts interventions to manage behaviours that challenge in people with dementia.

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.

Co-design, co-evaluation & co-learning: street triage, mental health & policingFebruary 2015 - July 2015

2013 is the European Year of Citizens. The EU funded this research to provide knowledge that will help to achieve the full and effective participation of persons with disabilities in society and the economy.

The MoRE project: models of reablement evaluation: a mixed methods evaluation of a complex interventionOctober 2014 - July 2017

This mixed-methods study aims to evaluate the effectiveness and cost-effectiveness of different ways of providing reablement in England.

Provision of informal care in England: exploring geographical and cultural associations and neighbourhood characteristics to inform policyOctober 2014 - July 2015

Previous studies have found that the likelihood of unpaid caregiving varies across local authorities. In this small pilot study, we extended the analysis of geographic variations by studying what influences unpaid care at the level of neighbourhoods.

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.

NIHR Evidence Synthesis CentreMarch 2014 - February 2017

The Centre appraises and synthesises evidence on effectiveness, cost effectiveness, patient experience, service delivery, implementation, resource use and equity to inform the organisation and delivery of health services.

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

Sunlight Exposure: Communicating the benefits and risks of ultraviolet lightJanuary 2014 - June 2014

The purpose of this work is two-fold. First, to examine the accuracy and comprehensiveness of UK national newspaper and magazine reporting of research evidence on the health benefits and risks associated with sun exposures. Second, to identify and describe how the UK media present the health benefits and risks associated with sun exposure.

Risk, safety and safeguarding: understanding and application of concepts and implications for integrated care servicesJanuary 2014 - April 2014

This research aims to explore conceptual understandings of risk, safety and safeguarding in different organisational contexts and assess whether any differences might impact on effective integrated service provision or act as barriers to closer working and integration of health and social care.

People who fund their own social care: a scoping reviewJanuary 2014 - April 2014

This was a short, relatively limited scoping review that aimed rapidly to map recent published evidence about people who fund their own social care, complemented by a focussed search of the websites of key organisations and, if time permitted, a small number of semi-structured interviews with key informants.

Household finances of carer's allowance recipientsApril 2013 - December 2013

In-depth interviews with 44 people who claimed Carer's Allowance (CA) or had an underlying entitlement to it, were carried out in three areas of the UK in summer 2013.

Risk, safeguarding and personal budgets: exploring relationships and identifying good practiceNovember 2012 - April 2014

This study explored the relationships between safeguarding and personalisation. Safeguarding is about enabling people to maintain independence, well-being and choice, as well as the right to live a life free from abuse and neglect. Personalisation is about tailoring services to the needs of the end user.

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.

Vision rehabilitation services: increasing the evidence baseOctober 2012 - June 2014

This project will explore the evidence base for the different service models that are being used and identify key features to be tested in future evaluation studies.

Fuel poverty and disabilitySeptember 2012 - February 2015

Taking on and taking over: physically disabled young adults and their care and support arrangements (the TOTO project)July 2012 - April 2014

This study focused on physically disabled young adults and those with chronic, complex or degenerative health conditions (but without learning disabilities). It identified what support was needed and provided for them to achieve their aspirations for choice and control over their support arrangements.

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.

Improving Care for people with Dementia: development & initial feasibility study for evaluation of Life Story work in dementia careJuly 2012 - March 2015

To carry out the development and initial feasibility stages of evaluation of a complex intervention – life story work – for people with dementia.

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 TraCCS project: Transforming community health services for children and young people who are ill: a quasi-experimental evaluationJune 2012 - June 2015

Current policy for children and young people who are ill advocates for care to be provided in the community and close to the patient and family. In response to this, health communities in England are redesigning their services to include comprehensive Children's Community Nursing (CCN) teams that can deliver this type of care. The purpose of this project is to evaluate the impact of introducing CCN teams.

Growing up and living with ataxia-telangiectasia (A-T)April 2012 - September 2012

Ataxia-telangiectasia (A-T) is a very rare, complex, progressive genetic condition which affects physical coordination and control. The A-T Society is concerned that current understandings of young people’s lives are primarily based on parents’ accounts. They commissioned this project in order to hear directly from young people about their experiences of growing up and living with A-T.

Informing the NHS Outcomes Framework: evaluating meaningful health outcomes for children with neurodisabilityFebruary 2012 - May 2013

The identification of suitable outcome measures will improve the evaluation of integrated NHS care for the large number of children affected by neurodisability, and has the potential to encourage the provision of more appropriate and effective health care. This research sought to appraise the potential of patient-reported outcome measures (PROMs) for children and young people with neurodisability.

Personal budgets, direct payments and self-directed support for people with severe mental health problemsJanuary 2012 - December 2013

There is limited evidence of the effectiveness of personalised care in mental health services. This project will carry out initial research to inform the development of a full evaluation programme of personalised care (comprising a personal budget or direct payment and self-directed support), subject to feasibility testing, to provide gold standard evidence of its effectiveness.

NHS Panel Study Data ArchivingDecember 2011 - January 2012

Research review of risk and adult social care: focused updateAugust 2011 – October 2011

During 2007, the Social Policy Research Unit conducted a review of research evidence on perceptions and management of risk amongst users of adult social care services. This update aims to identify empirical research conducted and published within the UK since 2007 (and, to a limited extent, currently in progress).

Personalisation of home care for older people using managed personal budgetsJanuary 2011 – December 2012

This study aimed to explore factors affecting the delivery of personalised support to older service users who opt for managed personal budgets.

Personalisation and carers: the roles of carers in assessment, support planning and managing personal budgetsJanuary 2011 - September 2013

This project will examine how far current practice in social care recognises and balances the needs and interests of service users and informal carers; and how far this practice is consistent with what service users and carers actually want. Clarifying the role of carers within personalisation is particularly important for service users with communication and/or cognitive impairments who depend on carers to communicate their needs and wishes.

Care and support for people with complex and severe needs: innovations and practice. A scoping studyJune 2010 - February 2012

People with complex and severe needs constitute a relatively small proportion of all adult social care users.

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.

Assessing outcomes of integrated care for long-term conditionsApril 2010 - February 2013

Home care for the elderly and disabled in foreign countriesJanuary 2010 - March 2011

The study aims to identify how European countries have reformed their home help and home care systems in order to achieve: High quality care which meets increasingly diversified and individualised needs, Effective and efficient services, Stronger user orientations in the provision of care, optimal balance of responsibility between formal and informal care, best way of attracting and retaining home care workers.

Transition to adult services and adulthood for young people with autistic spectrum conditionsNovember 2009 - April 2012

There was little research which explores transition for young people with ASC to identify the components of good practice that are associated with more positive experiences for young people and their parents. The research addressed these issues in order to inform standards of good practice in services for young people with ASC and their families at transition.

Reforms in long-term care policies in European Union countriesNovember 2009 - December 2010

The study aims to identify how European countries have reformed their home help and home care systems in order to achieve: High quality care which meets increasingly diversified and individualised needs, Effective and efficient services, Stronger user orientations in the provision of care, optimal balance of responsibility between formal and informal care, best way of attracting and retaining home care workers.

Personal Budgets: learning from experiences of older people and people with mental health problemsNovember 2009 - November 2010

The evaluation aims to establish whether personal health budgets ensure better health and social care outcomes, compared with conventional healthcare delivery

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.

Exploring the effects of the economic slowdown on adult social careMarch 2009 - November 2009

This study aims to explore the effects - positive and negative, direct and indirect - of the economic downturn on social care and support services and the consequent impacts on service users.

The LIPOP project: life in paediatric oncology: development and validation of a measure of work-related stresors and rewardsFebruary 2009 – January 2011

The purpose of this project is to develop a measure of the work-related stressors and rewards experienced by staff working in multi-disciplinary teams in paediatric and adolescent oncology treatment centres (doctors, nurses, social workers, play specialists and youth workers).

The effectiveness and costs of behavioural approaches to the management of sleep and behaviour problems among disabled childrenAugust 2008 - October 2011

This project investigated the effectiveness and costs of behavioural approaches to the management of sleep and behaviour problems among disabled children. The study was funded by the government funded Centre for Excellence in Outcomes in Children and Young People's Services (C4EO).

Rethinking adult social care in England - lessons from other countriesJuly 2008 - October 2008

This project will contribute to the consultation process on the principles that should underpin the funding and delivery of care and support for adults and older people. The consultation will inform a Green Paper, to be published in early 2009. The project draws on existing published material on the funding and organisation of social care in other countries, ranging from Scotland and Wales to Australia, Germany, Japan and the Netherlands.

Evaluating the Caring with Confidence ProgrammeJune 2008 - May 2011

Evaluation of Caring with Confidence Programme which will offer carers new opportunities to gain the knowledge, skills and expertise they require to look after both themselves, and those they care for, in a safe, efficient and effective manner, and to access the information and support they need.

Investigating the longer-term impacts of home care re-ablement servicesApril 2008 - December 2010

Individual budgets sit at the heart of government policy for improving choice and control for people needing social care support. Individual budgets bring together a number of different funding streams and offer a transparent way of allocating resources to individuals. There are 13 pilot areas for individual budgets. Evaluating these pilot projects is fundamental to a future decision by government about whether this approach will be rolled out more widely.

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.

Transition to adult services of disabled young people leaving ‘out of authority’ residential schoolsFebruary 2008 - June 2008

Little has been known about the transitions of young people leaving residential schools which are outside their home authority. This was a small exploratory study of local authority practice with regard to how the transitions from residential schools of pupils of school leaving age were planned and managed.

Investigating the longer-term effects of home care reablement servicesJune 2007 - September 2007

This project will examine changes in the subsequent use of social care services following a period of home care reablement intervention.

Models of multi-agency services for transition to adult services for disabled young people and those with complex health needs: Impact and costsMarch 2007 - December 2009

A survey of all local authorities in England was undertaken to investigate arrangements for multi-agency assessment for planning of and actual transfer from child to adult services for young people with disabilities or complex health needs.

Individual budgets: impact and outcomes for carersJanuary 2007 - October 2008

Individual budgets sit at the heart of government policy for improving choice and control for people needing social care support. Knowing the level of resources at their disposal can help individuals plan and control how their support needs are met.Putting the service user in control of their own budget for social care support is going to have an effect on the amount and type of care provided to them by their informal carers i.e. family members or friends.

Domiciliary care agencies' responses to increased user choice: perceived threats, barriers and opportunities from a changing marketJanuary 2007 - March 2008

The aim of this study was to examine, from the perspectives of domiciliary care agencies, the perceived threats, barriers and opportunities for responding to increases in user choice exercised through mechanisms such as direct payments and personal budgets.

Integrated services for people with long-term neurological conditions: an evaluation of the National Service FrameworkMay 2006 – September 2010

This project identified what helps or hinders integrated services and designed a benchmarking system, based on these factors. The key question was how different people with long-term neurological conditions (LTNCs), men/women; older people/younger people; people from minority ethnic communities, etc., and people with different types of LTNCs experienced integration.

Choice and change: extending choice and control over the lifecourseMay 2006 - December 2010

The Panel Study formed the core of SPRU’s Department of Health Research Programme from 2006-11. It examined the realities of choice in the context of changing circumstances, whether these changes arose from changes in illness or disability or from other social transitions.

The IBSEN project - National evaluation of the Individual Budgets pilot projectsApril 2006 - March 2008

Individual budgets sit at the heart of government policy for improving choice and control for people needing social care support. Individual budgets bring together a number of different funding streams and offer a transparent way of allocating resources to individuals. There are 13 pilot areas for individual budgets. Evaluating these pilot projects is fundamental to a future decision by government about whether this approach will be rolled out more widely.

Review of the research evidence surrounding risk perceptions, risk management strategies and their consequences in adult social care for different groups of service usersApril 2006 – September 2006

The aim of this scoping study was to identify and review recent research evidence on perceptions of risk and risk-related practice in the field of adult social care.

Person- and carer-centred respite care for people with dementia: developing methods of evaluating the effectiveness of different modelsMarch 2006 - September 2008

Little is known about the effectiveness of these different models of respite care. This project will develop tools to assess person- and carer-centredness which will offer a new approach to evaluating respite care.

Access to information about social care – response to recommendation from the Better Regulation Task ForceJanuary 2006 - July 2006

SPRU was commissioned to undertake a scoping review of available evidence about accessibility and availability of information for service users and carers across the spectrum of adult social care.

Examining the dynamics of choice: the context for informal caredult social care: focused updateMay 2005 - December 2005

The work undertaken as part of the Anniversary Lectureship involved a literature review of empirical work on issues related to carers and choice. One of the aims was to provide a background scoping paper for the Department of Health programme, summarising evidence about the dynamics of choice for carers.

Respite care for frail older people: an appraisal of effectiveness and cost effectivenessMarch 2005 - February 2006

This project will assess the effectiveness and cost-effectiveness of different types of community-based respite care for frail older people and their carers. It will carry out a systematic review of the effectiveness and cost-effectiveness literature on community-based respite care for frail older people and their carers. Studies of persons with frailty, disability, dementia or cancer will be eligible for inclusion in the review. We define 'frail' as 'having one or more long-term health problems and/or difficulties in one or more aspects of personal care, such that support to live independently is required.

Quality of life in children with congenital heart defectsNovember 2001 - April 2004

Yvonne Birks led work to develop a quality of life measure for children with heart disease (the ConQol).

Involving children and young people with a chronic illness or physical disability in local decisions about health services developmentJuly 1999 - January 2002

The aim of this project is to investigate the extent and nature of involvement of physically disabled or chronically ill children and young people in local health service development.