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.
Areas of life that are impacted by the loss of privacy for AYAs are multiple and include: loss of privacy over their bodies, loss of privacy over medical knowledge about their illness, loss of privacy if parents attend medical consultations. AYAs also tend to be very private about their sexual relationships; as Brannen et al (1994) argue, it is usual for adolescents to withhold information about their sexual activity from parents; but this privacy too is compromised as a result of the illness. However, of all the losses of privacy, the loss of privacy over their bodies and bodily functions may be what are experienced as most distressing by both the AYAs and their parents and can be particularly acute towards the end of life. It is this issue that the article takes as its focus.
As Andrews (2006) points out, learning the rules about when it is appropriate to cover our ‘private parts’ varies from culture to culture, and the age at which this becomes significant can vary even between siblings, but at some point children become self-conscious about their bodies and privacy assumes great importance. However, when a teenage son or daughter has cancer, there can be periods during the illness when they require the kind of intimate care they were given by their parents in infancy. The extent to which this is experienced as problematic varies between families; examples from my research with parents caring for an AYA with cancer demonstrate a variety of challenges and differing responses to those challenges.
Brenda, the mother of Miles diagnosed at 23 with neuroblastoma, said: “Often he had soiled himself during the night and woken up demoralised. With a young child, a parent can make light of such things but in our case we were always ‘treading on hot coals’ “ (Grinyer 2002:27). For Miles and for his mother, this reversion to a parent/child relationship so reminiscent of infancy must have been uncomfortable as, however lovingly care is given, it is nevertheless in Hawk et al’s (2009) terms ‘incongruent’.
Gabrielle, too needed to give intimate care to her son Steve who died from melanoma aged 24; she said the following: “Throughout all this you never lost your dignity as a young man. You allowed me to look after your body as I had when you were a baby. I fed you, washed you, wiped you clean but you remained in control” (Grinyer 2002:28). Despite Steve’s apparent ability to remain ‘in control’ the very fact that Gabrielle refers to the similarity to the care she had given her son as an infant, speaks of incongruity. Some families find it impossible to undertake such care. Anne, the mother of Chris who died at 21 from chronic myeloid leukaemia, was a medical doctor and presumably well used to patients’ bodies and bodily functions. However, she spoke of how she felt unable to help her son to shower. She recalled how humiliating he found it, how much he hated it, as she put it: “in fact the loss of any small dignity he had left” (Grinyer 2002:27). Her medical professionalism was apparently of little use to either of them. Both Brenda and Anne refer to the ‘dignity’ of their sons – Brenda feeling Miles had retained his while Anne felt Chris had lost his. Yet both were in similar situations indicating very individual and personal responses probably reflective of pre-existing relationships and family dynamics.
Hawk et al (2009:512) suggest that ‘Adolescents and mothers often have closer relationships compared to fathers’. I suggest that it is not coincidental that all the parents cited here are mothers – indeed the majority of parents who participated in my research were mothers. It is also likely that it will be mothers who are the parents who take responsibility for intimate physical care. However, Hawk et al also argue that there is a ‘stronger social expectation for male adolescent autonomy compared to females’ (517). So it seems there may also be a gendered difference between caring for a son or daughter. Arguably, it is significant that none of the examples offered were about the intimate care of daughters which may appear to be more ‘natural’ between mothers and daughters than between mothers and sons.
All my research findings suggest that parents are willing to do anything to support their sons and daughters through cancer. They make physical, emotional and financial sacrifices of the highest magnitude, yet many are not prepared for the intimate care that they need to provide or the distress that an AYA will feel at being dependent on such care. There is no easy answer to this distressing situation; some families may be able to access professional carers; others feel they have no choice but to do what they believe to be their ‘duty’. For those who do so with difficulty, it might lessen any feelings of guilt if they know that it is not unusual that giving intimate care to AYAs generates feelings of ‘incongruent intimacy’.
Andrews, S. (2006) Sexuality and sexual health throughout the childhood and teenage years, in Sexuality and Fertility Issues in Ill Health and Disability, in Balen, R. and Crawshaw, M. (eds) London, Jessica Kinglsey, pp. 19-32.
Brannen, J., Dodd, K., Oakley, A., and Storey, P. (1994) Young people, health and family Life, Buckingham: Open University Press.
Grinyer, A. (2002) Cancer in young adults: through parents’ eyes, Buckingham, Open University Press.
Hawk, S.T., Keijsers, L., Hale, W.W. and Meeus, W. (2009) Mind your own business! Longitudinal relations between perceived privacy invasion and adolescent-parent conflict, Journal of Family Psychology, pp. 511- 520.
 ‘Incongruent intimacy’ is a term I have borrowed from Hawk et al (2009) and used throughout as a way of interpreting the family dynamic when intimate care is needed by AYAs.
Dr Anne Grinyer is a medical sociologist and Senior Lecturer in the Faculty of Health and Medicine at Lancaster University, UK. Since 1999 Dr. Grinyer’s research, supported by the George Easton Memorial Trust, has focused on the effect of life stage in adolescents and young adults (AYAs) with cancer, and covers four main phases. The first phase focused on the impact a cancer diagnosis at this age has on family dynamics particularly in terms of the life stage of the AYAs. The second phase was based on interviews with young adults with cancer in order to understand the life stage issues from their perspective with a particular focus on the setting of care. The third phase examined long term survivorship and the ongoing impact of life stage at diagnosis. The fourth phase addressed palliative and end of life care for the age group and the challenge of providing age appropriate care. Each phase of the research has resulted in a number of publications including books based on the qualitative data collected from participants. The books are:
Grinyer, A. (2002) Cancer in Young Adults: Through Parents’ Eyes, Buckingham, Open University Press.
Grinyer A. (2007) Young People Living with Cancer: Implications for Policy and Practice, Buckingham, Open University Press.
Grinyer, A. (2009) Life after Cancer In Adolescence and Young Adulthood: Late Effects and Long Term Survivorship, Oxford, Routledge.
Grinyer A. (2012) Palliative & End of Life Care for Children & Young People: home, hospice and hospital, Oxford, Wiley Blackwell.
Anne also has an interest in the ethics of health research and in research design and has published a number of papers on this topic.