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Department of Health Research Programme
Choice and change: extending choice and control over the lifecourse -
a qualitative longitudinal panel study

Researchers: Caroline Glendinning, Tricia Sloper, Bryony Beresford, Hilary Arksey, Kate Baxter, Jan Heaton, Wendy Mitchell, Parvaneh Rabiee, Alison Wilde, Jane Maddison

Funder: Department of Health Policy Research Programme

Duration: May 2006 to December 2010

Background

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. This enabled us to examine the consequences of past choices, including the responses of service providers, and the impact of choices on perceived independence.

Study design

The panel study purposively sampled groups of people who were likely to experience considerable change in their support needs:

  • young people with increasing support needs and their parents
  • adults and older people with fluctuating support needs
  • adults and older people experiencing the sudden onset of disability.

Respondents were interviewed at regular intervals over two to three years. Complementary interviews were also carried out with key professionals and/or family members who were heavily involved in specific recent choices. As well as tracking changes in individual circumstances and responses to these, cross-cutting themes also examined issues such as:

  • the role of carers in supporting choice
  • the perceived response of service providers to user choice
  • the impact of choices on independence.

Interview data was coded and managed using MAXqda and charted using the Framework approach to identify common and contrasting patterns.

Findings

Choices were rarely simple, discrete events. Making choices took time, especially in order to realise desired options. Although having choice was central to feelings of independence, negative emotions were also often involved. Partly reflecting these, there was a reluctance to revise choices, even when circumstances changed. Access to information was confirmed as critically important in alerting people to the possibility of choice as well as in appraising choice options.

Choice was rarely a private, individual experience. Family members played important roles in supporting choice and the needs of others were taken into account in appraising options. Time was important in prompting choices, developing experience in making choices and in the growth of satisfaction with the outcomes of choice.

Health and social care professionals need to consider their roles in supporting choice and reducing inequalities that can arise from choice-based policies.

Outcomes

Most study participants consented to their interview data being lodged with the Timescapes qualitative longitudinal data archive, part of the UK Data Archive. The data will therefore be available for secondary analysis by future generations of researchers.

The Life Opportunities of Disabled People, Office for Disability Issues (2010). Acknowledgement to the Panel Study team for sharing our experience in interviewing learning disabled people.

Publications and presentations

Show Abstract...

2014

Trust, uncertainty and identity in health-related decision-making: the role of key professionals, 2014
Wilde, A. , Disability & Society, 29, 2, 198-212.
2013

Changing choices: disabled and chronically ill people's experiences of reconsidering choices, 2013
Baxter, K., Chronic Illness, 9, 2, 116-132.
The role of emotions in the process of making choices about welfare services: the experiences of disabled people in England, 2013
Baxter, K. and Glendinning, C., Social Policy and Society, 12, 3, 439-450.
Exploring the relationships between choice and independence: experiences of disabled and older people, 2013
Rabiee, P., British Journal of Social Work, 43, 5, 872-888.
2012

Exploring the temporal aspects of direct payments, 2012
Arksey, H. and Baxter, K., British Journal of Social Work, 42, 1, 147-164.
Choice and change: disabled adults' and older people's experiences of making choices. Invited.
Baxter, K. and Rabiee, P., Making Research Count Seminar, Innovation Centre, University of York, York, 25 January 2012.
Choice, control and well-being: the experiences of working age and older disabled people. Keynote.
Glendinning, C., Ageing in Place and Supported Living for Ageing and Disabled People Seminar, University of Lancaster, Lancaster, 31 May 2012.
Decision-making around moving on from full-time education: the roles and experiences of parents of disabled young people with degenerative conditions, 2012
Maddison, J. and Beresford, B., Health and Social Care in the Community, 20, 5, 477-487.
The development of satisfaction with service-related choices for disabled young people with degenerative conditions: evidence from parents' accounts, 2012
Maddison, J. and Beresford, B., Health and Social Care in the Community, 20, 4, 388-399.
Parents' accounts: factors considered when deciding how far to involve their son/daughter with learning disabilities in choice-making, 2012
Mitchell, W., Children and Youth Services Review, 34, 8, 1560-1569.
Perspectives of disabled young people with degenerative conditions on making choices with parents and peers, 2012
Mitchell, W., Qualitative Social Work, 11, 6, 621-643.
2011

Changing choices: revisiting service-related choices
Baxter, K., Choice and Change: Sharing Experiences of a Qualitative Longitudinal Study Seminar, Alcuin Research Resource Centre, University of York, York, 29 March 2011. Audio-visual of presentation available here
Changing choices: revisiting service-related choices (adults and older people)
Baxter, K., Choice and Change - Sharing Experiences of a Qualitative Longitudinal Study Seminar, School of Sociology and Social Policy, University of Leeds, Leeds, 16 February 2011.
Making choices about support services: disabled adults' and older people's use of information, 2011
Baxter, K. and Glendinning, C., Health and Social Care in the Community, 19, 3, 272-279.
Choice and change: disabled adults' and older people's experiences of making choices about services and support, 2011
Baxter, K., Rabiee, P. and Glendinning, C., Research Works, 2011-04, Social Policy Research Unit, University of York.
Choice and change
Glendinning, C., Choice and Change - Sharing Experiences of a Qualitative Longitudinal Study Seminar, School of Sociology and Social Policy, University of Leeds, Leeds, 10 February 2011.
Overview of the Choice & Change panel study and lessons learnt
Glendinning, C., Choice and Change - Sharing Experiences of a Qualitative Longitudinal Study Seminar, Alcuin Research Resource Centre, University of York, 29 March 2011. Audio-visual of presentations available here
People with disabilities making choices about their services and support. Keynote.
Glendinning, C., National Disability Conference, Dublin, Ireland, 13 October 2011. Available on Youtube
Developing satisfaction with service-related choices: Evidence from parents' accounts
Glendinning, C. and Maddison, J., Choice and Change: Sharing Experiences of a Qualitative Longitudinal Study Seminar, Alcuin Research Resource Centre, University of York, 29 March 2011. Audio-visual of presentation available here
Making choices about medical interventions: the experiences of disabled young people with degenerative conditions, (forthcoming)
Mitchell, W., Health Expectations.
Working with young people who have life-limiting illnesses and learning disabilities on a longitudinal study: some reflections
Mitchell, W., Choice and Change - Sharing Experiences of a Qualitative Longitudinal Study Seminar, School of Sociology and Social Policy, University of Leeds, Leeds, 10 February 2011.
Working with young people who have life-limiting illnesses and learning disabilities on a longitudinal study: some reflections
Mitchell, W., Choice and Change: Sharing Experiences of a Qualitative Longitudinal Study Seminar, Alcuin Research Resource Centre, University of York, York, 29 March 2011. Audio-visual of presentation available here
Making choices in my life: listening to the ideas and experiences of young people in the UK who communicate non-verbally, 2011
Mitchell, W. and Sloper, P., Children and Youth Services Review, 33, 4, 521-527.
Choice and change: how disabled young people with degenerative conditions and their parents make choices about care and services, 2011
Mitchell, W., Maddison, J. and Beresford, B., Research Works, 2011-05, Social Policy Research Unit.
Becoming an 'expert' consumer: learning from experience
Rabiee, P., Choice and Change - Sharing Experiences of a Qualitative Longitudinal Study Seminar, School of Sociology and Social Policy, University of Leeds, Leeds, 10 February 2011.
Becoming an expert consumer: learning from experience
Rabiee, P., Choice and Change: Sharing Experiences of a Qualitative Longitudinal Study Seminar, Alcuin Research Resource Centre, University of York, York, 29 March 2011. Audio-visual of presentation available here
2010

Emotions and choice-making by disabled adults and older people
Baxter, K., Social Policy in Times of Change, Social Policy Association Annual Conference, University of Lincoln, 5-7 July 2010.
The Choice and Change Study: the realities of making choices
Baxter, K., Personalisation - choices and challenges, Making Research Count Seminar, University of Brighton, Brighton, 15 December 2010.
Choice and change: conducting qualitative longitudinal research in adult social care
Glendinning, C., School for Social Care Research First Annual Conference, London School of Economics, London, 30 March 2010.
'I know how I feel': listening to young people with life-limiting conditions who have learning and communication impairments, 2010
Mitchell, W., Qualitative Social Work, 9, 2, 185-203.
'I know what I want': listening to the ideas and experiences of children and young people who have learning and/or communication impairments: adapting project wide research methods and lessons learnt
Mitchell, W., Children, Young People and Parents, University of Washington-Seattle and University of York Joint Seminar, University of Washington, Seattle, USA, 1-3 June 2010.
Adapting project wide research materials and methods for young people with life-limiting illnesses who have learning and/or communication impairments: lessons learnt
Mitchell, W., International Perspectives on Qualitative Research in Social Sciences (EUROQUAL) Conference, Institute of Civil Engineers, London, 4-6 May 2010.
Decision-making with family and peers: experiences of young people with life-limiting conditions
Mitchell, W., International Conference on Childhood and Youth in Transition, Sheffield, 6-8 July 2010.
Developing and using Talking Mats with young people with learning and/or communication impairments
Mitchell, W., Researching the Lives of Disabled Children and Young People: ESRC Methodological Approaches Seminar, ARRC, University of York, 20 May 2010.
Young people with life-limiting conditions making choices with family and peers: how can practitioners support and facilitate this?
Mitchell, W., Crossing the Bridge to the Future: The First Annual Paediatric Palliative Care Practitioners Conference, Bristol, 15-16 June 2010.
Young people with life-limiting conditions making decisions with family and peers: how can health professionals support and facilitate this?
Mitchell, W., Communication in Healthcare International Conference, University of Verona, Italy, 5-8 September 2010.
Choice: what, when and why? Exploring the importance of choice to disabled people, 2010
Rabiee, P. and Glendinning, C., Disability & Society, 25, 7, 827-839.
2009

Decision-making with family and peers: young people with life-limiting conditions' perspective
Mitchell, W., Office for Disability Issues Evidence Day, London, 19 November 2009.
Choice: what, when and why? Exploring the importance of choice to disabled people
Rabiee, P., Policy Futures - Learning from the Past? Social Policy Association Annual Conference, University of Edinburgh, 29 June-1 July 2009.
Choice: what, when and why? Exploring the importance of choice to disabled people
Rabiee, P., Office for Disability Issues Evidence Day, London, 19 November 2009.
What choices are important to younger and older disabled people, in what circumstances and why?
Rabiee, P., Research in Practice for Adults (RIPfA) Councillors and Trustees Seminar, Solihull, Birmingham, 6 February 2009.
2008

Increasing choice and control for older and disabled people: a critical review of new developments in England, 2008
Glendinning, C., Social Policy and Administration, 42, 5, 451-469.
'Choices and choice-making in my life': Listening to young people with learning disabilities and/or communication impairments
Mitchell, W., Re-Presenting Childhood 2nd International Conference, Kenwood Hotel, Sheffield, 8-10 July 2008.
'I know how I feel'. Exploring some challenges, lessons learnt and the future potential of using symbols to listen to young people with life-limiting conditions who have learning and communication impairments
Mitchell, W., 7th International Conference on Social Science Methodology, Campus di Monte Sant'Angelo, Naples, Italy, 1-5 September 2008.
Choices: what, when and why? Exploring the importance of choice to disabled people
Rabiee, P., 4th International Disability Studies Conference, Lancaster University, 2-4 September 2008.
2006

Choice and change: a qualitative longitudinal panel study
Baxter, K. and Glendinning, C., Department of Health Social Care Research Showcase, Department of Health, London, 10 November 2006.
Choice and independence across the lifecourse: a research agenda
Glendinning, C., Departmental Seminar, Personal Social Services Research Unit, London School of Economics, London School of Economics, London, 1 June 2006.
Choice and change: Extending choice and control over the life-course
Heaton, J., Mitchell, W. and Sloper, P., Martin House Children's Hospice Staff Training Day, Martin House, Boston Spa, 9 October 2006.

If you require further information about the project, please contact Kate Baxter email Kate Baxter

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