The loss of privacy for AYAs with life threatening illness
by Dr. Anne Grinyer
Adolescence is a time when privacy is being negotiated between young people and their parents. Gradually the close monitoring and control, exercised over younger children by parents in order to protect them, is relaxed and adolescents begin to expect and value privacy in many areas of their lives. Hawk et al (2009:511) say that family members must negotiate satisfactory rules but this can be complicated as both individual and collective boundaries must be managed. In their study of perceived privacy invasion and adolescent-parent conflict, Hawk et al (2009:511) argue that ‘privacy boundary coordination is important’ as it can enhance relationship closeness and avoid the negativity of what they call ‘incongruent intimacy’. However, what might be interpreted as ‘incongruent intimacy’ may be a direct result of life-threatening illness in AYAs who are likely to become dependent on parents for care.
by Dr. Ronald Barr
There is growing recognition that adolescents and young adults (AYA) with cancer are a distinct population with respect to their development and psychosocial needs, the spectrum and biology of their malignant diseases, and their forced fit within the currently dichotomized (adult and pediatric) health care system. These realities provide challenges for optimal health care delivery as well as opportunities in the realms of education and research1,2.
In the UK, stimulated by the Teenage Cancer Trust (TCT), the National Institute for Health and Clinical Excellence (NICE) has described a strategy for “Improving Outcomes for Children and Young People with Cancer”3 that provides recommendations on service provision based on the best available evidence. It is aimed at both health care administrators and providers of clinical service. Likewise, in Australia the federal government invested $15 million in 2007 to develop a network of multi-disciplinary Youth Cancer Services across the country4.