Skip to main content
Intended for healthcare professionals
Restricted access
Research article
First published online August 9, 2011

Perspectives of disabled young people with degenerative conditions on making choices with parents and peers


English government policy advocates providing greater choice-making opportunities for service users and their families. However, there is a gap in our knowledge about the role family, especially parents, and also friends play in the choice-making processes of disabled young people. Drawing on data from an English longitudinal study, this article begins to address this gap by exploring disabled young people's shared choice-making with parents and peers. Using qualitative data from 27 interviews with disabled young people with degenerative conditions, it demonstrates that young people want to participate in making choices about their own lives but choices are often made with other people, especially parents and peers. Processes of choice-making are diverse. Parents and/or peers are involved at different stages and in varying degrees with young people depending on personal circumstances. For example, circumstances such as young people's age and experience and the type of choice and its perceived seriousness. Recognizing this complexity and the importance of a holistic approach to choice-making, the article concludes with some practice suggestions.

Get full access to this article

View all access and purchase options for this article.


Alderson P (2007) Competent children? Minors consent to health care treatment and research. Social Science and Medicine 65(11): 2272–2283.
Alderson P, Montgomery J (1996) Healthcare Choices: Making Decisions with Children, London: Institute for Public Policy Research.
Antle B, Montgomery G, Stapleford C (2009) The many layers of social support: Capturing the voices of young people with Spina Bifida and their parents. Health and Social Work 34(2): 97–106.
Arksey H and Kemp P (2008) Dimensions of Choice: A Narrative Review of Cash-for-care Schemes. York: Social Policy Research Unit, University of York. Available at:
Beresford B and Sloper P (1999) The Information Needs of Chronically Ill or Physically Disabled Children and Adolescents. York: Social Policy Research Unit, University of York. Available at:
Beresford B and Sloper P (2008) Understanding the Dynamics of Decision-making and Choice: A scoping study of key psychological theories. York: Social Policy Research Unit, University of York. Available at:
Brannen J, Dodd K, Oakley A, Storey P (1994) Young People, Health and Family Life, Buckingham: OUP.
Butler I, Robinson M, Scanlan L (2005) Children and Decision-making, York: NCB and JRF.
Cameron L, Murphy J (2002) Enabling young people with a learning disability to make choices at a time of transition. British Journal of Learning Disabilities 30(3): 105–112.
Cannella H, O’Reilly M, Lancioni G (2005) Choice and preference assessment with people with severe to profound developmental disabilities: A review of the literature. Research in Developmental Disabilities 26(1): 1–15.
Coyne I (2008) Children's participation in consultations and decision-making at health service level: A review of the literature. International Journal of Nursing Studies 45(11): 1682–1689.
Giddens A (1992) The Transformation of Intimacy: Sexuality, Love and Eroticism in Modern Societies, Cambridge: Polity.
Jamieson L (1999) Intimacy transformed? A critical look at the ‘pure relationship’. Sociology 33(3): 477–494.
Kearney C, McKnight T (1997) Preference, choice, and persons with disabilities: A synopsis of assessments, interventions, and future directions. Clinical Psychological Review 17(2): 217–238.
Kirchler E, Rodler C, Holzl E, Meier K (2001) Conflict and Decision-Making in Close Relationships: Love, Money and Daily Routines. European Monographs in Social Psychology, Hove: Psychology Press.
Lord J, Hutchinson P (2003) Individualised support and funding: Building blocks for capacity building and inclusion. Disability and Society 18(1): 71–86.
Mayall B(2006) Child-adult relations in social space. In: Tisdall EK, Davis J, Hill M, Prout A (eds) Children, Young People and Social Inclusion: Participation for what?, Bristol: Policy Press.
Miller V (2009) Parent-child collaborative decision-making for the management of chronic illness: A qualitative analysis. Families, Systems and Health 27(3): 249–266.
Mitchell W (2010) ‘I know how I feel’: Listening to young people with life-limiting conditions who have learning and communication impairments. Qualitative Social Work 9(2): 185–203.
Moore L, Kirk S (2010) A literature review of children's and young people's participation in decisions relating to health care. Journal of Clinical Nursing 19(15/16): 2215–2225.
Murphy J (1998) Talking mats: Speech and language research in practice. Speech and Language Therapy in Practice. Autumn 1998. 11–14.
Murphy J, Tester S, Hubbard G, Downs M, MacDonald C (2005) Enabling frail older people with a communication difficulty to express their views: The use of Talking Mats™ as an interview tool. Health and Social Care in the Community 13(2): 95–107.
Nind M (2008) Conducting Qualitative Research with People with Learning, Communication and other Disabilities: Methodological Challenges, ESRC Review Paper 12, National Centre for Research Methods.
Ottmann G, Laragy C, Haddon M (2009) Experiences of disability consumer-directed care users in Australia: Results from a longitudinal qualitative study. Health and Social Care in the Community 17(5): 466–475.
Ritchie J, Lewis J (2003) Qualitative Research Practice: A guide for Social Science Students and Researchers, SAGE: London.
Rosenbaum P, Lepp M, McKenzie M, Miller H (1998) Family-centred service: A conceptual framework and research review. Physical and Occupational Therapy in Paediatrics 18(1): 1–20.
Smart C (2007) Personal Life: New Directions in Sociological Thinking, Cambridge: Polity.
Smith L, Coleman V, Bradshaw M (2002) Family-Centred Care: Concept, Theory and Practice, Basingstoke: Palgrave.
Stevens M, Lord B, Proctor M-T, Nagy S, O’Riordan E (2010) Research with vulnerable families caring for children with life-limiting conditions. Qualitative Health Research 20(4): 496–505.
Tisdall K (2006) National Contexts Affecting the Lives of Disabled Children in Denmark, France, Germany, Ireland, Italy, Sweden and UK. Newcastle: University of Newcastle. Available at:
UK HM Treasury/Department for Education and Skills (2007) Aiming High for Disabled Children: Better Support for Families, London: HM Treasury.
Wright B, Aldridge J, Wurr K, Sloper P, Tomlinson H, Miller M (2009) Clinical dilemmas in children with life-limiting illnesses: Decision-making and the law. Palliative Medicine 23(3): 238–247.

Cite article

Cite article

Cite article


Download to reference manager

If you have citation software installed, you can download article citation data to the citation manager of your choice

Share options


Share this article

Share with email
Share on social media

Share access to this article

Sharing links are not relevant where the article is open access and not available if you do not have a subscription.

For more information view the SAGE Journals article sharing page.

Information, rights and permissions


Published In

Article first published online: August 9, 2011
Issue published: November 2012


  1. Choice-making
  2. disabled young people
  3. listening to young people
  4. parents
  5. shared decision-making
  6. visual methods
  7. young people with degenerative conditions

Rights and permissions

© The Author(s) 2011 Reprints and permissions:
Request permissions for this article.


Published online: August 9, 2011
Issue published: November 2012



Wendy Mitchell
Social Policy Research Unit, University of York, UK


Wendy Mitchell, Social Policy Research Unit, University of York, Heslington, York YO10 5DD, UK. Email: [email protected]

Metrics and citations


Journals metrics

This article was published in Qualitative Social Work.


Article usage*

Total views and downloads: 289

*Article usage tracking started in December 2016


See the impact this article is making through the number of times it’s been read, and the Altmetric Score.
Learn more about the Altmetric Scores

Articles citing this one

Web of Science: 11 view articles Opens in new tab

Crossref: 12

  1. Perspectives of the National Disability Insurance Scheme: participants...
    Go to citation Crossref Google Scholar
  2. Perspectives of self-direction: a systematic review of key areas contr...
    Go to citation Crossref Google Scholar
  3. The participation of parents of disabled children and young people in ...
    Go to citation Crossref Google Scholar
  4. Decision-making and future planning for children with life-limiting co...
    Go to citation Crossref Google Scholar
  5. Taking on choice and control in personal care and support: The experie...
    Go to citation Crossref Google Scholar
  6. Assistive Technology
    Go to citation Crossref Google Scholar
  7. Assistive Technology
    Go to citation Crossref Google Scholar
  8. The Participation of Disabled Children and Young People: A Social Just...
    Go to citation Crossref Google Scholar
  9. Persons With Multiple Disabilities Engage in Stimulus Choice and Postu...
    Go to citation Crossref Google ScholarPub Med
  10. What is a person-centred approach? Familiarity and understanding of in...
    Go to citation Crossref Google Scholar
  11. Informed Choice for Disabled Young People in Transition: A Secondary A...
    Go to citation Crossref Google Scholar
  12. Hospice support and the transition to adult services and adulthood for...
    Go to citation Crossref Google ScholarPub Med

Figures and tables

Figures & Media


View Options

Get access

Access options

If you have access to journal content via a personal subscription, university, library, employer or society, select from the options below:

CoramBAAF members can access this journal content using society membership credentials.

CoramBAAF members can access this journal content using society membership credentials.

Alternatively, view purchase options below:

Purchase 24 hour online access to view and download content.

Access journal content via a DeepDyve subscription or find out more about this option.

View options


View PDF/ePub

Full Text

View Full Text