Young People Living with Cancer: Implications for Policy and Practice

4. Loss of Independence

It is clear from the young peoples’ accounts that the illness brought with it a loss of independence. The age range of the participants suggests that there might be a wide spectrum of experience and attitudes, yet we find that Ruth diagnosed at 14 found the prospect of the loss of privacy and the physical reliance on her parents as challenging as those at the older end of the range who were facing the loss of a more established independence from their family. While there are differing scenarios represented, such as that of Michelle who clearly wanted to live at home, through to the contrast of Philip who refused to return for care by his parents, we can still see similarities. Michelle recognised that she did not know how or when she might eventually gain her independence, and Philip still had to deal with what he perceived as ‘over anxious fussing’ from a distance in addition to severe financial hardship. Although dealing with the situation in different ways, these are young people struggling with a disrupted life trajectory and the loss of not just independence but of the ability to fulfil the ‘normal’ expectations of the age group.

There is evidence from the accounts that throughout the age range and variety of life styles the loss of independence was upsetting. Few young adults at this stage of life are likely to have the material or social resources to sustain them through such an experience. The reluctant need to acknowledge that their newly found independence is so easily lost – particularly at a time when as Craig (2006) points out peers are establishing their own independence successfully – generates a great deal of distress. Given that under most circumstances it will be parents to whom the young adult turns for support, there is also the likelihood that there will be a reversion to previous dependencies and patterns of behaviour redolent of an earlier family dynamic that will be experienced as inappropriate and challenging by all family members.

We have also seen that a manifestation of independence can be to attend medical consultations alone believing it inappropriate to be accompanied by a parent – usually the mother (Grinyer 2002a). This can present problems not only for the young adult who may be given bad news that they do not understand fully without the support of a family member, it can also be difficult for professionals who are faced with having to balance judgements about capacity, competence and confidentiality. This theme is explored further in the final chapter.

In addition to the loss of physical independence the loss of financial independence was an issue for some. At this age when so little in terms of material resources have been amassed, and a minimal contribution to State Benefits made, young adults may find themselves struggling not only with the loss of financial independence but also be facing real financial hardship as we saw in Adrian’s case when the bailiffs were called in to distrain goods.

It is clear that the Benefits system was challenging. It was experienced as complex and unsympathetic to the age related needs and financially precarious situation in which many young people find themselves. Officials dealing with claims were perceived to be unhelpful and on occasion hostile, and in the cases of hardship presented here it seems that no social worker or other professional involved in the medical care was readily identifiable to assist the young person. Interestingly the young adults who raised financial issues as a problem were not treated on a specialist ward, thus it seems likely that the complexity of the Benefits system was not well understood by professionals outside the age specific care setting, suggesting another advantage of the specialist environment where support staff become expert in the Benefits system as it applies to teenagers and young adults.

While not of direct clinical significance to the medical professionals providing care, the loss of independence and concerns over financial issues affect the young people at a profound level, and must therefore impact upon their well being. The example of the social work support that resulted in financial assistance was experienced by Charlotte and her family as immensely helpful and supportive. This suggests that specialist expertise in the age specific care setting can additionally transform the experience in ways that are not directly related to medical care but which impact upon quality of life in a meaningful way and thus may affect compliance and ultimately outcomes.

Key Points

The loss of independence is felt acutely because:

• it is fragile in this age group
• it is experienced across the age spectrum
• dependence on parents is perceived as a retrograde step
• there can be a renewal of infantile dependency
• family dynamics are disrupted
• financial resources may be limited
• access to Benefits may be difficult
• a key worker in an age specific setting may have expertise in entitlements
• such support may improve compliance