Young People Living with Cancer: Implications for Policy and Practice

3. Settings of Care

The need for ‘respect’ as a basis for following medical advice and compliance with treatment has been established as significant in the wider population, particularly amongst those groups who may feel that they are disrespected because of their ethnicity or lack of educational attainment (Blanchard and Lurie 2004). Many of the same issues apply to the young adults whose need to be respected for their individuality is fundamental, yet as we have seen staff in the non specialist setting may find it difficult to relate to them. The evidence from the young adults supports Albritton and Bleyer’s (2003) assertion with which this chapter began, that the two settings of non specialist care – adult and paediatric – may not know how to treat young adults.

The young people who had been treated in non specialist settings of care reacted to their environments in differing ways. Some felt isolated and wanted visitors while others had felt too ill to care. Some found their fellow patients challenging while others found them distracting or good company. Some experienced the staff as uncaring while others found them to have been supportive and understanding. Some liked the privacy of a single room, others felt scared and isolated.

While those in the non specialist care setting had a wide range of experiences – both positive and negative – those treated in the specialist environment had much more commonality of experience. Many of the extracts taken from accounts of those who have been treated in the specialist environment speak of a culture on the ward that is qualitatively different from the non specialist setting of care. It is evidenced, for example, by the lack of rigidity in ward routines that acknowledges teenaged preferences, as Thomas et al (2006:303) say ‘adherence to treatment regimes can be challenging, especially if it results in loss of autonomy’. But interestingly, it seems that it was those who had experience of both the specialist and the non-specialist setting and who were as a result able to make a direct comparison, who were most critical of the non specialist care and most appreciative of the age specific unit.

The creation of a certain ‘atmosphere’ in the specialist units was commented on by Diane (TCT ward sister) and this was echoed throughout the testimonies of the young people. It is clear that while many of the young people spoke of the ward as being like a family and referred to staff as being like ‘mates’ having a laugh and a joke, this interaction was carefully managed by the staff whose central relationship to the young people was as their health care providers thus necessitating the maintenance of a professional relationship that inspired confidence in their treatment. The maintenance of appropriate boundaries is of fundamental importance, while the banter and jokey atmosphere works well by providing a relaxed environment, at a deeper level all are aware of the professionalism of the staff and the centrality of their medical skill. Flaherty (2006) quotes Sheets who warns of the danger of becoming a friend rather than being a professional and as Arbuckle et al say:

Expressing empathy whilst maintaining boundaries and an ability to reflect and develop a flexible approach when working with young people are all very important issues for training. (Arbuckle et al 2005:239)

Additionally, professional boundaries need to be kept in place because as Morgan and Hubber say, the situation needs to be managed in such a way that dependence does not become an issue. As they point out, while professionals are a small and admittedly important part of the lives of the patients, they are not integral to them (Morgan and Hubber 2004:134). In a similar vein Woodgate (2006) reports that the negative side of developing a very close relationship with a member of staff could be that some adolescents have a hard time dealing with a reduction in attention as their health improves. The result can be a feeling of sadness that they are no longer the most ‘important’ patient and that staff no longer care for them in the same way.

Interestingly Morgan and Hubber report that when the TCT Unit in Leeds was set up the teenagers were asked if the staff should wear uniforms or everyday clothes. Given the value placed on informality and being treated like a ‘mate’ it is at first sight perhaps surprising that Morgan and Hubber (2004:134) report this response ‘Definitely uniforms, you are professionals, not our friends’; but fundamentally the young people need to have confidence in the staff and a uniform is a signifier of professional expertise that does not preclude the ability to relate to the young people on an individual and age appropriate level.

My observations on the TCT ward suggest that the environment allowed as normal an engagement as possible with peers undergoing similar experiences. When feeling well enough the young people would congregate in the day room and did not appear to focus primarily on their illness or treatment but talked about all the usual interests of the age group. Facilities for playing music, computer games, and other such age appropriate activities made for a relaxed and informal ‘youth club’ type environment where staff were talked to as friends. Despite this ‘youth club’ atmosphere, there did not appear to be the usual peer pressure in relationship to self presentation. Indeed the ward was a place where the young people felt confident enough to be seen without wigs and make up by fellow patients. Nevertheless, such an environment may not suit younger teenagers who like Thomas can feel it is too noisy and would rather be on a children’s ward, at least during certain periods of their illness and treatment, and Ross who at the upper end of the age range preferred to stay on the adult ward but receive much of his care on the TCT ward, thus indicating a variety of needs in the age band and a need for a fluidity and flexibility that can accommodate changing needs along the continuum.

Despite the variations, I would argue that the diversity represented in this chapter is of less significance than the life stage features that unite the group. For example, as we have seen, being treated with young children or the elderly can be experienced as stressful and exacerbate feelings of isolation. This isolation has been mitigated in cases where young adults have been invited to visit the specialist ward giving them both the opportunity to meet others in the same age group who are also being treated for cancer. Where the young people feel that staff cannot relate to them or their age specific needs there are indications that this can compromise compliance as we saw in Emma’ case.

The loss of the ‘normality’ of teenage life separates young people from their peers, may result in low self esteem and a belief that they are different in some fundamental way that cannot be compensated for. This can spill over into a reluctance to allow even good friends to visit as we have seen in Nathan’s case. If such feelings are experienced while on a non specialist ward away from the proximity of peers, however good the medical care, the feeling that life is passing by while the young adults are losing touch with youth culture can be acute.

While the experience of being treated with patients of a similar age and at a similar stage of life appears to be preferable for many of the young people who need to know that they are not the only ones in their age group to have cancer, the potential to make a friend who subsequently dies is a real issue. As Nicola said, young people do not expect their friends to die, and if the death is from an illness that they also have, their own potential mortality becomes conceivable. Nevertheless, the positivity of the experience in general outweighs the negative impact of such a rare occurrence.

So, it can be seen that specialist centres of care are experienced predominantly as supportive and age appropriate, yet it is unrealistic to suppose that resources can be found to treat all young adults on wards similar to those offered by the Teenage Cancer Trust facilities. Whelan (2005) says it important to know how to support young adults who are treated outside the centres of specialist care. The TCT wards clearly offer a model of good practice, while some accounts of treatment on general wards suggest elements of bad or at least insensitive practice. We have seen that while the medical care outside the specialist setting has not come under criticism, the young adults did not always feel ‘safe’ on non specialist wards. This was identified by Diane (TCT ward sister) as an issue, even though – as she said – they were of course safe.

Despite the negative experiences, there were nevertheless enough examples of good practice outside the specialist facilities to suggest that an age appropriate approach can be implemented in a variety of care settings. For example, Michelle’s account of her stay on a general ward should be encouraging to both staff and patients in non specialist environments of care. If life stage issues are understood, the model of the specialist ward and its philosophy of care can be adopted in the non specialist environment and result in a culture that can transform a setting that may be considered less than ideal.

This chapter has shown that age appropriate care is of great significance to young adults, but that there are also a variety of needs within the age band to be recognised and catered for. At the present time this seems most likely to be experienced in the specialist environment, but evidence that good practice can be found outside the age specific wards suggests that models of age appropriate care could be implemented elsewhere if outreach programmes and the training of staff were undertaken by those with specialist experience who understand so well the particular problems faced by the young adults. This is an issue that is further explored in the final chapter.

Key Points

Through an in depth understanding of the age related issues, staff in specialist settings can help to:

• reduce isolation and ‘difference’
• maintain peer contact
• offer educational opportunities and activities
• offer practical help for altered appearance
• provide an informal, relaxed atmosphere
• organise ward routine round teenage patterns
• relieve boredom
• engage at an age appropriate level but maintain professional boundaries
• improve compliance