by Dr Anne Grinyer, Director Masters Programmes, Division of Health Research, Faculty of Health and Medicine, Lancaster University
The diagnosis of life threatening illness in a child or young person is experienced as a devastating shock to the whole family; parents, siblings and wider family members are all affected as are their family relationships. The diagnosis of cancer in adolescents and young adults (AYAs) brings with it particular challenges that are related to the life stage of the young person at a transitional moment between childhood and adulthood; they are beginning to establish their independence but it is extremely fragile and thrown into crisis under these circumstances. This chapter considers how family relationships are affected: the tensions that can arise between parents and a son or daughter struggling to retain their autonomy; the negotiation of roles when the AYA has a partner or is married; the difficulty parents have in creating ‘open awareness’ about the prognosis; and finally how parents manage their own health issues under such circumstances.
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.
Adolescent and young adult cancer in popular culture
by Dr Anne Grinyer, Faculty of Health and Medicine, Lancaster University, UK
The Fault in Our Stars by John Green (2012) is the fictional account of the love story of two teenagers, Hazel and Gus, both living with terminal cancer. The book is a bestseller and the film topped the box office on its opening weekend. Having been involved in researching the life stage impact of Adolescent and Young Adult (AYA) cancer for the last 15 years, I read the book and watched the film, interested in how issues I had discovered in my research might be addressed in popular culture. However, for many readers and audiences, it will be the first time they have encountered a story about cancer in this age group; if the audience at the screening I attended was typical, many tears are being shed. However, I had been determined not to be moved to tears by what mixed reviews described as a film: ‘sink[ing] slowly into gooey mawkishness’ and a ‘manipulative, lachrymose melodrama’ (The Independent); ‘an effective (and affecting) weepie’ (The Guardian); ‘an emotionally draining movie’ (Natalie Stendall) and the Telegraph review – which after suggesting that the film draws on moral equivalences that are ‘actively repulsive’ – says ‘there’s fine work here’.
How can we respectfully make our child feel independent even when he or she becomes dependent?
Dr Anne Grinyer, Faculty of Health and Medicine, Lancaster University UK
NOTE: AYA = Adolescent/Young Adult
When parents care for an adolescent or young adult (AYA) son or daughter with cancer, the struggle that the AYA has in retaining their fragile independence throughout the treatment period can cause tensions within the family. If treatment fails and the AYA faces the end of life, the situation can become even more challenging for both the parents and the AYA whose failing health will necessitate increasing reliance on parental support. Yet despite deteriorating health, the AYA may attempt to assert their independence in order to live the remainder of their lives to the full – often causing parents acute anxiety in the process. How can this situation be managed?
by Dr Anne Grinyer, Faculty of Health and Medicine, Lancaster University UK
Through four phases of research on the psychosocial impact of cancer in adolescents and young adults, I have looked at the effect on the family, the experience of treatment and the care setting, survivorship and finally palliative and end of life care. All my observations throughout the process suggest that this age group – from 16-24 – are particularly shocked by a cancer diagnosis, they do not fit well in either paediatric or adult care settings, and they struggle with the loss of their burgeoning independence. However, when treatment fails and there is a terminal diagnosis, all of these age-related issues are exacerbated for the young people, their families and their health care professionals. While most of my research is UK based, these are challenges that transcend national boundaries and are situated in the life stage of the young people.