‘Being in the same boat’: ethnographic insights into an adolescent cancer unit

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Abstract

Cancer may be considered a particularly challenging diagnosis for adolescents. Treatment for adolescents in the United Kingdom may be provided in paediatric or adult settings or, more rarely, in specialist adolescent cancer units. An ethnographic approach was adopted to gather ‘insiders’ views of one such unit using in-depth interviews with patients, parents and professionals, as well as non-participant observation of key events. Two data themes ‘cancer and the cancer unit’ and ‘changes over time’ are discussed in this paper. Benefits of the unit included shared understandings and the manner in which the privations of adolescent cancer were contained and managed by those involved.

Introduction

The transition from childhood to adulthood is marked by a series of social and cultural rituals, such as experimenting with alcohol and sexual relationships, and testing the boundaries of parental and social authority. In embodied terms, adolescence is also characterised by an over-riding sense of ‘unfinishedness’; the young person is neither an adult nor a child, but is seeking to establish an identity in relation to their peer group and the wider social world (Lupton and Tulloch, 1998). Such factors require consideration in relation to the care needs of adolescents who face the disruption brought about by a diagnosis of cancer. Research into the adolescent cancer experience is needed to ensure that appropriate services are provided for this unique patient group.

The complexity of the challenges facing adolescents with cancer should prompt health-care providers to question the adequacy of the services available. However, there is a lack of evidence, certainly in the UK context, concerning the needs of adolescents and the appropriateness of available services (Kelly et al., 2002; Hollis and Morgan, 2001).

For example, little attention has been paid to whether, or to what extent, specialist adolescent cancer units are more effective, or more acceptable, than general cancer care settings. Less than 10 specialist adolescent oncology units are currently established in the United Kingdom. They often rely on financial support being provided by dedicated adolescent cancer charities. Such developments have stemmed from a belief that it is inappropriate to provide care to adolescents in existing child or adult oncology settings. Those specialised care settings which do exist, whilst having the primary aim of improving standards of treatment, care and support, also offer the opportunity to examine the experience of adolescent cancer in more depth.

Section snippets

Adolescence and cancer

Cancer in adolescents is rare; it is estimated that there are about 600–800 new cases of teenage cancer diagnosed in the UK annually (Stiller, 1994; Souhami et al., 1996). Those cancers that do occur differ from those of younger children or adults making it also a specialist area of biomedical practice and research. For instance, there is a higher incidence of leukaemias, lymphomas, germ cell tumours, bone and soft tissue sarcomas, and brain and central nervous system tumours amongst

Methods

This project set out to provide insight into the experiences of adolescents, parents and professionals within the adolescent cancer unit of an inner London hospital. An ethnographic approach was employed to provide some description of the workings of this setting, whilst also allowing the issues that arose to be explored further during in-depth interviews (Atkinson and Hammersley, 1994; Pawson and Tilley, 1997). The researchers intended that adolescent cancer care would be better understood as

Analysis

Data analysis involved each researcher first reading the transcripts of ‘their’ interviews to obtain an overall impression of the data. Significant statements were highlighted on a line-by-line basis, and clusters of these were grouped brought together as themes, and over-riding these, data categories. For each group of participants (patients, parents and staff) data categories were mapped out to identify points of connection and overlap. These maps were then discussed and revisions made to the

‘Cancer is not a label’

The fact that the unit was concerned solely with adolescent cancer emerged as highly significant. This theme incorporated the social image of cancer; how it felt to be the parent of a child with the disease; and the experiences of those who found themselves becoming part of a cancer unit.

Clearly, negative images of cancer had impacted on the adolescents and their families. However, the unit appeared to help people to cope with such attitudes. The benefits included the provision of a ‘haven’

Diagnosis, recurrence and other ‘difficult times’

The experience of a cancer diagnosis was the first step in a journey that the participants described vividly. For the majority of the adolescents, discovering that symptoms were actually indicative of cancer had resulted in feelings of shock, especially as many were just starting to establish some degree of independence in life:

When they said I had to go to Birmingham that was a bit of a shock…it was a shock because I was at University and it was unexpected…but you get vibes…waiting for the

Limitations

Despite the richness of these data the study is limited by a number of factors. Only one unit was accessed due to resource constraints. It would now be worth comparing the culture and practices on this unit with others in the United Kingdom, as well as in other countries. The findings also reflect the views of those involved in the unit at this time and a longitudinal approach would help strengthen the findings further. Ethnographic approaches are also limited by factors such as observer bias,

Conclusions

This study provides insight into the experience of cancer in adolescence from the perspective of one specialist cancer unit. The culture of the unit emerged as a pivotal source of support and expertise. The benefits gained from the unit, however, were more than having particular facilities or professionals available. Equally important were the values, skills and personalities of those who were working there, as well the contribution made by the patients and families who entered and left the

Acknowledgements

We wish to acknowledge the Teenage Cancer Trust for funding this study and to thank all those who agreed to take part.

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