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Department of Health Research Programme
Priorities and perceptions of disabled children and young people and their families regarding outcomes of social care

Researchers: Bryony Beresford, Parvaneh Rabiee, Tricia Sloper

Funder: Department of Health Policy Research Programme

Duration: October 2001 to December 2005

Background

There was a lack of research on what outcomes disabled children and their parents desire from support services. The Looked after Children (LAC) system provides an initial framework within which to investigate such outcomes: defining the seven dimensions on which progress should be assessed (health, education, identity, family and social relationships, social presentation, emotional and behavioural development, and self care skills).

However, problems of its applicability to disabled children, whose development may be compromised in one or more areas by their impairment, have long been recognised. For example, how do we view the assessment of self care skills for a child with a degenerative condition, or the health record of a child with a life limiting illness? In addition, the LAC system does not address the issue of outcomes for parents/carers.

Research has shown that parents with disabled children provide extra care, over and above that of ‘the reasonable parent’, and that parents with disabled children are particularly vulnerable to stress, which is often produced by trying to meet the extra demands of caring for the child without the necessary resources and support. Parental stress in turn impinges upon children’s development. Thus, in looking at outcomes of services for disabled children it was necessary to consider outcomes for both parents and child, identifying where these concur and where they differ.

This study built on the LAC framework, and on work carried out here in SPRU on outcomes for disabled adults and their carers, to investigate the views of disabled children and young people and their parents on their desired outcomes from social care services. The results informed the development of systems of outcome assessment applicable to disabled children and their families.

Aims

  • To identify the desired outcomes of social care from the perspectives of disabled children and young people and their parents;
  • to explore managers’ and practitioners’ perspectives on outcomes.
  • working with local authority staff, children and parents, to develop tools by which outcome information that can be collected in practice.
  • to pilot and evaluate the implementation of these tools.

Methods

Working in three local authority areas, interviews and focus groups with disabled children and parents, and participatory workshops with key stakeholders amongst staff, were used to investigate views of outcomes. Using the research findings, the research team worked with local steering groups of staff and parents in two sites to develop tools by which information about outcomes for parents and children could be collected in practice. One site developed a tool to support outcome focused assessment within the core assessment process. The other site developed an outcomes-focused tool looking at parental well-being. These tools were piloted by practitioners, with researchers in SPRU conducting an independent evaluation of the tools from practitioner and parent perspectives.

Conferences

Two successful conferences were held in 2006 in the Spring and Autumn to disseminate the findings from this research and explore the implications of the Every Child Matters five universal outcomes as they affect disabled children.

Publications and presentations

Show Abstract...

2012

Desired outcomes for young people with degenerative conditions. Plenary.
Beresford, B., International Conference on Paediatric and Palliative Care, University of Cardiff, Cardiff, 11-13 July 2012.
2009

Interviewing kids who don't use speech
Rabiee, P., Doing Research with Kids: Design, Dilemmas and Directions (3D Workshops) Conference, Bloorview Research Institute, Toronto, Canada, 22-23 October 2009.
Every Child Matters outcomes: what do they mean for disabled children and young people?, 2009
Sloper, P., Beresford, B. and Rabiee, P., Children & Society, 23, 4, 265-278.
2007

Outcomes for parents with disabled children and carers of disabled or older adults: Similarities, differences and the implications for assessment practice, 2007
Arksey, H., Beresford, B., Glendinning, C., Greco, V. and Sloper, P., Social Policy Research Unit.
More than Tom's mum: parents desired outcomes from support services
Beresford, B., National Portage Association Annual Conference, Hilton Hotel, Northampton, 28 September 2007.
Outcomes for parents with disabled children, 2007
Beresford, B., Rabiee, P. and Sloper, P., Research Works, 2007-03, Social Policy Research Unit.
Priorities and Perceptions of Disabled Children and Young People and Their Parents Regarding Outcomes from Support Services, 2007
Beresford, B., Rabiee, P. and Sloper, P., Social Policy Research Unit.
Priorities and Perceptions of Disabled Children and Young People and Their Parents Regarding Outcomes from Support Services: Appendices, 2007
Beresford, B., Rabiee, P. and Sloper, P., Social Policy Research Unit.
Desired outcomes for children and adolescents with autistic spectrum disorders, 2007
Beresford, B., Tozer, R., Rabiee, P. and Sloper, P., Children & Society, 21, 1, 4-16.
Outcomes for disabled children, 2007
Sloper, P., Rabiee, P. and Beresford, B., Research Works, 2007-02, Social Policy Research Unit.
2006

How can we collect disabled children's views about outcomes?
Rabiee, P., Every Child Matters Outcomes: What do they mean for disabled children?, Alcuin Research Resource Centre, University of York, York, 5 May 2006.
How can we collect disabled children's views about outcomes?
Rabiee, P., Every Child Matters Outcomes: What do they mean for disabled children?, Alcuin Research Resource Centre, University of York, York, 6 October 2006.
Collecting information about parents' desired outcomes
Sloper, P., Every Child Matters Outcomes: What do they mean for disabled children?, Alcuin Research Resource Centre, University of York, York, 5 May 2006.
Outcomes for disabled children: what does the research tell us?
Sloper, P., Every Child Matters Outcomes: What do they mean for disabled children?, Alcuin Research Resource Centre, University of York, York, 5 May 2006.
Outcomes for disabled children: what does the research tell us?
Sloper, P., Every Child Matters Outcomes: What do they mean for disabled children?, Alcuin Research Resource Centre, University of York, York, 6 October 2006.
2005

Desired outcomes for children and young people with complex health care needs, and children who do not use speech for communication, 2005
Rabiee, P., Sloper, P. and Beresford, B., Health and Social Care in the Community, 13, 5, 478-87.
Doing research with children and young people who do not use speech for communication, 2005
Rabiee, P., Sloper, P. and Beresford, B., Children & Society, 19, 5, 385-96.
2004

Developing an approach to involving children with autistic spectrum disorders in a social care research project, 2004
Beresford, B., Tozer, R., Rabiee, P. and Sloper, P., British Journal of Learning Disabilities, 32, 4, 180-185.

Professional press

Children & Young People Now, 17 October 2007. Outcomes overlook disabled young

If you require further information about the project, please contact Bryony Beresford Email Bryony Beresford

Associated research
 
 
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