Making choices about medical interventions: the experience of disabled young people with degenerative conditions

Research output: Contribution to journalArticlepeer-review


Background –Current western policy, including the UK advocates choice for service users and their families, taking greater control and being more involved in decision-making. However, children’s role in health decision-making, especially from their own perspective has received less research attention compared to doctors and parents’ perspectives.

Objective – To explore the perspective and experiences of disabled young people with degenerative conditions as they face significant medical interventions and engage in decision-making processes.

Design and Methods – Findings from a longitudinal qualitative study of 10 young people (13-22 years) with degenerative conditions are reported. Individual semi-structured interviews were conducted with participants over three years (2007-2010), the paper reports data from all three interview rounds. Interviews focused on medical intervention choices the young people identified as significant.

Results – Although the young people in this study felt involved in the medical intervention choices discussed, findings demonstrate a complex and diverse picture of decision-making. Results highlighted different decisional roles adopted by the young people, the importance of information heuristics and working with other people whilst engaging in complex processes weighing up different decisional factors.

Discussion – Young people’s experiences demonstrate the importance of moving beyond viewing health choices as technical or rational decisions. How each young person framed their decision was important. Recognising this diversity and the importance of emerging themes such as, living a normal life, independence, fear of decisions viewed as ‘irreversible’ and the role of parents and peers in decision-making; there are clear practice implications including active practitioner listening, sensitivity and continued holistic family working.
Original languageEnglish
Pages (from-to)n/a
JournalHealth Expectations
Volumeearly online
Issue numbern/a
Early online date2 Feb 2013
Publication statusPublished - 3 Feb 2013


  • Young people with degenerative conditions
  • disabled young people
  • decision-making processes
  • medical intervention choices
  • young people making health decisions

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