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

By Bridget Young, Mary Dixon-Woods, Kate C. Windridge and David Heney

Abstract

Also available from the BMJ website at http://www.bmj.comObjectives: To examine young people's and parents' accounts of communication about cancer in childhood.\ud \ud Design: Semistructured interviews analysed using the constant comparative method.\ud \ud Setting: Paediatric oncology unit.\ud \ud Participants: 13 families, comprising 19 parents (13 mothers, six fathers) and 13 patients aged 8­-17 years, recruited from one paediatric oncology unit. The\ud patients had cancer or brain tumour.\ud \ud Results: Most parents described acting in an\ud 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\ud 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\ud 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.\ud \ud 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\ud 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\ud young patients

Publisher: British Medical Journal
Year: 2003
OAI identifier: oai:lra.le.ac.uk:2381/159

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Citations

  1. (2001). Association. Consent, rights and choices in health care for chil› dren and young people. doi
  2. Cancer patients’ information needs and information seeking behav› iour: in depth interview study.
  3. Children as patients: a communications process study in family practice.
  4. (1982). Children in clinics.London:
  5. (1993). Children’s consent to surgery. Buckingham: doi
  6. (1998). Children’s contributions to pediatric outpatient encounters. Pediatrics doi
  7. (2002). Communicating with children and adolescents about their cancer. Cochrane Library. Issue 4. Oxford: Update Software,
  8. Competing interests: None declared. doi
  9. (1990). Constructing and reconstructing childhood.
  10. (2006). Doctor›parent›child communication. A (re)view of the literature. Soc Sci Med 2001;52:839›51. What is already known on this topic on 29
  11. (1991). Does “telling” less protect more? Relationships among age, information disclosure, and what children with cancer see and feel. doi
  12. (1998). Doing qualitative analysis with doi
  13. (1994). Dying of awareness: the theory of awareness contexts revisited. Soc Health Illn doi
  14. (1989). Emotional labour: skill and work in the social regulation of feel› ings. Soc Rev
  15. Grounded theory and the constant comparative method. doi
  16. (1996). health and the social order. Buckingham: Open Univer›
  17. Information and par› ticipation preferences among cancer patients.
  18. (1995). No news is not good news: information preferences of patients with cancer. Psycho›oncol doi
  19. Partnerships with children. doi
  20. Qualitative interview study of communication between parents and children about maternal breast cancer. doi
  21. (1979). The ceremonial order of the clinic. doi
  22. (1967). The discovery of grounded theory: strategies for quali› tative research
  23. The presentation of the self in everyday life. doi
  24. (1978). The private worlds of dying children.

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