Young People Living with Cancer: Implications for Policy and Practice

8. The implications for policy and practice

The aim of the research was to reach a largely unstudied group of people many of whose needs have remained unmet (Albritton and Bleyer 2003). Through entering the life world of the young adult with cancer, I have attempted to capture the essence of what it is like to be a young adult with cancer and to glimpse the meaning of the experience for the participants thus identifying how provision to support them through the cancer journey can be best delivered.

What the preceding testimonies have established is that the age group has specific needs and the accounts have identified what these consist of in the young people’s own terms rather than relying on an interpretation from parents or professionals. Some of the topics covered in the book relate directly to issues raised in the NICE guidance (2005a) and can thus help to inform policy, others are more personally orientated, but nevertheless still contribute to a necessary understanding of what the young person is facing and what might affect their compliance and thus the eventual outcome.

It is clear that there is much good practice, particularly in the specialist centres, and that staff in these centres of excellence have a sound grasp of the issues and a deep understanding of the experiences that the young people are going through, yet as we have seen, ‘evidence’ of this has hitherto been regarded as ‘anecdotal’. What this volume offers is evidence based on personal accounts organised in a way that is designed to act as an accessible reference point for those who are charged with the care of young adults in whatever setting. I also hope it provides a contribution to the ‘proof’ required by those who are responsible for the design and implementation of policy.

It seems likely that the testimonies in this volume will come as no surprise to staff in the specialist care setting, yet according to Morgan and Hubber (2004) medical opinion about adolescent units still varies enormously and many doctors are reluctant to refer their patients to such a unit. Similarly Lewis (2005:241) suggests that the concept of specialist units still generates controversy and that ‘some clinicians doubt the need to consider teenagers and young adults as an identifiable and separate group’ and believe that ‘the group should be managed within the context of site-specific teams’. It is to be hoped that the first hand accounts included in this volume will speak clearly to the reader of the significance of life stage and of the particular need that it carries with it when travelling the cancer journey, and as a consequence the central importance of incorporating age specific awareness and expertise into the care setting be it specialist or non specialist will accepted. The case for age appropriate care seems compelling, but are patient numbers sufficient to justify such provision? According to Michelagnoli et al (2003:2571) the epidemiological data is ‘persuasive of a ‘critical mass’, not just reflecting patient numbers but highlighting a huge “unmet” need.’

Finally, much of this volume has focused on the treatment period, but as Neville (2000) points out the journey does not end when treatment ceases, and the ramifications may be felt for years. However, Decker et al (2004:332) report ‘survivors’ lack of knowledge about late effects and lack of awareness of their risks’. While Viner (2003) is aware of the danger of ‘over-medicalising’ well survivors, he argues that they may nevertheless benefit from long term support to deal with physical and psychosocial late effects; hence ongoing opportunities to talk through the experience should be made available. Thomas et al (2006) say lower levels of family cohesion are experienced by adolescent cancer survivors; this is therefore a group that need to have a safety net in place for a possibly lengthy period after recovery in order that their physical healing can be matched by social and psychological healing.

Key Points

• Despite their differences young adults have particular age related needs
• There is more that unites young adults than divides them
• Young adults do not fit easily within adult or children’s care settings
• Staff in non-specialist settings can find young adults challenging
• The philosophy of care in the specialist setting can improve compliance
• Issues of concern to young adults are understood in the specialist setting
• Inclusion in clinical trials – more likely in the specialist setting – may improve outcomes
• Managing the family’s role and consent procedures may be more familiar in the specialist setting
• Fertility issues may be more skilfully handled in the specialist setting
• Staff caring for young adults with cancer need both training and support
• Support staff in the specialist centres are recognised as key members of the team
• Good practice can be rolled out across non specialist settings
• Virtual units, peripatetic teams and shared care can be adopted to good effect