Intended for healthcare professionals

Letters

Needs of teenagers with chronic disability

BMJ 1999; 318 doi: https://doi.org/10.1136/bmj.318.7188.945 (Published 03 April 1999) Cite this as: BMJ 1999;318:945
  1. Clare Williams, Research fellow
  1. Postgraduate Centre, United Medical and Dental Schools, St Thomas's Hospital, London SE1 7EH

    EDITOR—In Smith's editorial on the needs of teenagers with epilepsy, he states that “the consultation must focus on the needs and independence of the teenager, with the parents taking a back seat.”1 This view replicates the individualistic approach of health education by treating teenagers as autonomous individuals, with little recognition of the constraints that might impact on choices.

    In line with other work,2 my qualitative research on teenagers with either diabetes or asthma found that they tended to manage chronic disability in ways according to their sex (unpublished data). Teenage boys were more likely to try to hide any disability or to appear as being in control and unaffected by illness, particularly in public settings. Teenage girls, however, were happier to admit to having a chronic disability in both public and private settings.

    In teenage boys, this minimising of disability in public was usually only possible because of the support they were given in managing their disease by their parents—almost always mothers—at home. In contrast to the mothers of teenage girls, mothers of teenage boys were often very involved with the management of their sons' disability. Girls were much more likely to be independent in managing their disease—and often had been from an early age—and felt that this responsible behaviour was expected of them by others such as parents, teachers, and health professionals. This independence in management, however, did not always have positive effects for teenage girls. They were more likely than boys to be secretively non-compliant with aspects of their treatment regimens and to feel guilty because of this.

    In terms of consultations, focusing on the needs of teenagers should mean listening to them in a non-judgemental way, with the recognition that young people are the experts in living with their chronic disability. What may be perceived as rebellious adolescent non-compliance may be teenagers skilfully adapting the regimen to fit in with their daily lives. If parents are present at consultations, it may be that they play a major role in helping the teenager to manage, and this could well be what the teenager has chosen. It should also be recognised that negative outcomes may result from promoting independence regardless and in encouraging parents to “take a back seat.” Instead of independence, it may be more helpful to talk about interdependence, recognising that very few of us are completely independent, and that this may not be particularly desirable anyway.

    References

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