Tag: sociology

Studying young people’s experiences of cancer

Jane's PhD

Clicking the image of the front page of Jane Davies‘ PhD in this post will download the complete text of this newly completed doctorate. Danny Kelly and I were Jane’s supervisors, and for a flavour of her study and its findings here is its abstract:

This thesis is the result of an in-depth study, which explored the experience of choice and control in decision making when five young people developed and were subsequently treated for cancer. The study was underpinned by the sociological theories of agency and structure against the backdrop of the developmental nature of adolescence and emerging adulthood. The experience of the disease was situated at a time when these young people were in the process of developing their early adult life plans and were at a fundamental crossroad in the life cycle. The diagnosis and subsequent treatment for cancer at this juncture impacted significantly on the lives of these five young people and those close to them.

Exploratory case studies were utilised in an attempt to examine more specifically each young person’s choice, intentionality, control and freedom in deciding all aspects of decision making, beginning with the onset of symptoms followed by diagnosis and treatment. Interviews, observations and documentary analysis were instigated to generate data. Multiple sources were selected to generate further insights and these included family, partners, friends and health care professionals who were close to the young people during their experience.

Three overarching themes were identified during analysis of the data: ‘life then’, ‘life interrupted’ and ‘life reclaimed’. Key elements of these themes included a number of complex and interrelating factors which were interwoven within the everyday lives of the young people. In the ‘life then’ phase, ‘holding on’ to agency prior to diagnosis and the importance of close and intimate relationships was illuminated. In ‘life interrupted’, agentic power during treatment, in terms of the range of decision making and the complexity of the parental role, were prominent. In ‘life reclaimed’ the ‘different but determined’ nature of young people’s behaviour and re-aligned agency was transparent as they made their way towards the end of treatment.

The findings culminated in the illumination of individual trajectories relating to the fluctuating nature of agency during the cancer experience. These incorporated the three overarching themes as three sequential phases. Commonalities in this regard were also identified across the five cases. Several discussions with practice colleagues resulted in the formulation of potential ways in which ultimately these trajectories might be applied to practice in the future.

For those who may need additional persuading: further to my post last week on qualitative research, Jane’s thesis is another example of why this type of study needs to be done. This is an excellent doctorate. The data therein were carefully and sensitively generated, analysed and written up. Jane has already lead authored this paper, which appeared in the Journal of Advanced Nursing last year. Expect more to follow.

Learning from the study of trajectories

Trajectories paperHere’s a post about research, which draws on the paper Complex caring trajectories in community mental health: contingencies, divisions of labor and care coordination which I authored with Davina Allen.

One of the things I’m interested in is the study of ‘trajectories’. With colleagues, the US sociologist Anselm Strauss wrote about these in the book Social Organization of Medical Work. Most people will be familiar with the idea of illnesses ‘running their course’. To this everyday concept Strauss and his collaborators added a whole lot more, introducing the term ‘trajectory’ to refer:

…not only to the physiological unfolding of a patient’s disease but to the total organization of work done over that course, plus the impact on those involved with that work and its organization (Strauss et al. 1985: 8).

Trajectories are dynamic and often unpredictable, not least because they involve people. They are also vulnerable to being tilted by what Strauss et al term ‘contingencies’. Contingencies can have origins in the health and illness experience. So, a trajectory can (for example) veer off in a new direction because of an acute exacerbation of a chronic illness. But trajectories can additionally be shaped by contingencies which have organisational origins. These can relate to the biographies of workers, and to features of the system such as the availability of resources.

Trajectories can be studied. In my PhD I borrowed the design and methods used by Davina Allen, Lesley Griffiths and Patricia Lyne in their study of stroke care, and used these to understand the trajectories of people using community mental health services. In each of two contrasting parts of Wales I recruited three people currently using secondary mental health services. Each became the starting point for a detailed, small-scale, trajectory case study. Over a period of months I followed each person’s unfolding experiences, and the organisation of work surrounding. Using snowball sampling I mapped the network of (paid and unpaid) people providing care to each, and interviewed those identified in this way about their work. I observed care planning meetings, home visits, and read each service user participant’s National Health Service (NHS) records.

Community Mental Health JournalIn the publication for Community Mental Health Journal to which this post relates, Davina and I drew on these data to show how trajectories unfolding in the mental health field are shaped. We offered instances of trajectories being tilted by mental health crises, but also by key professionals leaving their posts and by a lack of resources within the larger system.

We then used data to reveal actual divisions of labour, in a way which has not (to the best of my knowledge) been done before  in the mental health context. By mapping the networks of care surrounding each user participant we were able to learn about work being done by all sorts of people, including many who (I suspect) are rarely thought of as making significant contributions at all. We wrote about the work of community pharmacists, support workers, lay carers and indeed the work of service users themselves.

Having laid all this out we closed by pointing to the importance of what Strauss et al called ‘articulation work’. This is the work associated with the management of trajectories, through mechanisms such as care coordination. Mental health workers in the UK know all about this through things like the care programme approach (CPA).

The detail of this paper you can read for yourself, with the link at the top of this post taking you to our author’s copy of the manuscript as stored on Cardiff University’s ORCA repository. This, word-for-word, is the same as the version of the article which is currently in press here.

For those interested in the paper’s back story, just to note that when it came to selecting a journal I was keen not to submit to a nursing publication. I have no problem with nursing journals per se, but this ‘trajectories’ paper was (and is) aimed at a wider readership. Community Mental Health Journal is based in the US, and publishes papers on, well, community mental health. And that fitted well with the intended audience. This said, one of the anonymous reviewers of the submitted manuscript had things to say about the language used, reminding us that the journal to which we had submitted is read by mental health practitioners and academics and not, primarily, by sociologists. Attending to the review meant some rewriting to improve accessibility. I’ll leave future readers to judge for themselves whether we succeeded.