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Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents

BMJ 2003; 326 doi: https://doi.org/10.1136/bmj.326.7384.305 (Published 08 February 2003) Cite this as: BMJ 2003;326:305
  1. Bridget Young (B.Young{at}hull.ac.uk), lecturera,
  2. Mary Dixon-Woods, senior lecturerb,
  3. Kate C Windridge, research fellowc,
  4. David Heney, consultantd
  1. a Department of Psychology, University of Hull, Hull HU6 7RX
  2. b Department of Epidemiology and Public Health, University of Leicester, Leicester LE1 6TP
  3. c Department of General Practice and Primary Health Care, University of Leicester, Leicester General Hospital, Leicester LE5 4PW
  4. d Children's Hospital, Leicester Royal Infirmary, Leicester LE1 5WW
  1. Correspondence to: B Young
  • Accepted 5 November 2002

Abstract

Objectives: To examine young people's and parents' accounts of communication about cancer in childhood.

Design: Semistructured interviews analysed using the constant comparative method.

Setting: Paediatric oncology unit.

Participants: 13 families, comprising 19 parents (13 mothers, six fathers) and 13 patients aged 8–17 years, recruited from one paediatric oncology unit. The patients had cancer or brain tumour.

Results: Most parents described acting in an executive-like capacity, managing what and how their children were told about their illness, particularly at the time of diagnosis. Their accounts were shaped by concerns to manage their identity as strong and optimistic parents and to protect their child's wellbeing. The patients identified elements of their parents' role that both facilitated and constrained their communication, and while they welcomed their parents' involvement, some expressed unease with the constraining aspects of their parents' role. Some young people described feeling marginalised in consultations and pointed to difficulties they experienced in encounters with some doctors.

Conclusions: There are difficulties in managing communication with young people who have a chronic, life threatening illness. Health professionals need to be aware of how the social positioning of young people (relative to adults) and the executive role of parents can contribute to the marginalisation of young people and hamper the development of successful relationships between themselves and young patients.

What is already known on this topic

What is already known on this topic The BMA has supported the principle of open communication with young patients

Young people are sometimes excluded from participating in consultations and parents are reluctant to communicate openly with their seriously ill children

What this study adds

What this study adds Parents take on an executive-like role, managing what and how their children are told about their illnesses

This role both facilitates and constrains communication with young people

Some young people feel marginalised in consultations—they described unease with this and problems in their relationships with some doctors

Footnotes

  • Funding The Ward 27 Children's Cancer Fund.

  • Competing interests None declared.

  • Accepted 5 November 2002
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