Young People Living with Cancer: Implications for Policy and Practice
6. The effect on physical appearance
The data show that the change of appearance brought about by the illness and its treatments has a profound effect on the morale and self confidence of the young people. In Emma’s case so great was her distress at her potential hair loss that she would have refused treatment had she not been referred to a specialist unit, thus demonstrating how crucial sensitive and effective communication by staff is at ensuring compliance and possibly survival. Yet, according to Shaw et al (2004) healthcare professionals’ ability to communicate effectively with young people with cancer, whose body image is fragile, is very limited. This may be the case particularly outside the specialist setting where the psychosocial aspects of the illness are not so well understood and difficulties in communication are exacerbated by a lack of expertise in knowing how to engage with the young adults in an area they find so distressing.
According to Hedstrom and von Essen (2004) while parents recognised that their children had experienced altered self image as particularly distressing only one nurse mentioned this as an issue in relationship to a single child. It is interesting to note that the children in Hedstrom and von Essen’s study were younger than adolescents at between 4-7 years; nevertheless, even at their age body image was of considerable significance. In a reflection from a social worker’s perspective, Arbuckle et al (2005) suggest that training is essential for staff who may lack confidence, and it awareness in the area, as young people may tend to minimise the physical effects out of ‘embarrassment, invincibility or fear’ (Arbuckle et al 2005:239).
There is a tendency to assume that hair loss in particular is a greater problem for the young women than for the young men. Indeed the young men and women themselves each assumed the other gender had it ‘easier’ in some sense, yet as we have seen both young men and young women were affected in a very similar way. Despite the age range from Ruth at 14 to Kelly at 26, the issues were similar, again suggesting that there is more that unites those across the age range than that which divides them. While it is likely that a person of any age will be distressed at a negative impact on their appearance, it seems that for children or for much older adults the effects will be mitigated by other factors. The amount of socialising done during teenage years and young adulthood coupled with the importance of appearing fashionable and part of a peer group all combine to make the experience of changing appearance more challenging to this age group. This may be exacerbated as we have seen by the stares and offensive comments made by casual passers by – again a phenomenon that might be less likely with either children or older adults.
‘Appearance’ may be a personal issue and seem at first sight to be unrelated to policy or outcomes. However, professionals’ recognition of the trauma endured when appearance is changed or damaged coupled with practical support in offering strategies to minimise or address the physical changes and deal with the distress may result in the young cancer patient being more willing to undergo radical or aggressive treatment. One of the strategies can be to offer a workshop run by volunteer beauticians that help to enable the teenagers look their best and which give them ‘tremendous self confidence’ (Robertson 2006). Additionally, recognition of the social stigma and misunderstanding that may result from hair loss can be addressed through the provision of a card supplied by the specialist unit and carried by the young person to show at night clubs where entry may otherwise be denied. These practical interventions and the support offered for the management of the detrimental effects on appearance may increase the likelihood of compliance and by extension survival. In addition, the increased confidence from such support may also contribute to a willingness to let friends visit and to lessen concern about the impact their appearance will have outside the confines and relative safety of the care setting.
We also remember from Chapter Three that being treated in a specialist facility alongside a peer group undergoing similar physical effects on their appearance created an environment where the young people were more at ease with showing their physical changes without needing to disguise them. As reintegration after treatment is central to social as well as emotional recovery, any chance of building confidence that can carry the young adult through to the next stage should be embedded into practice that runs alongside the medical treatments.
Key Points
The impact on appearance is of fundamental significance because:
- body image is central
- boys and girls are equally affected
- appearance signifies belonging
- identity may be threatened
- self confidence may be damaged
- abuse/taunting may be experienced
- rejection may be feared
- social isolation may result
- compliance may be affected