Choice and change: extending choice and control over the lifecourse - a qualitative longitudinal panel study

SPRU research team

• Caroline Glendinning (Principal Investigator)
• Bryony Beresford
• Kate Baxter
• Parvaneh Rabiee

External collaborators

• Wendy Mitchell
• Hilary Arksey
• Jan Heaton
• Tricia Sloper

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.

Additional information