Tag: trajectories

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.

Critical junctures (reprise)

This morning Nicola Evans’ and my paper on Critical junctures has appeared in advance online publication form on the Social Theory & Health website. This is very pleasing, though as I noted in my original post the terms of Palgrave’s copyright agreement mean that we have to wait for a period of 18 months from now before depositing a green open access version of the full text to accompany the article’s ORCA entry.

In the meantime, here again is the article’s abstract, which I hope at least whets readers’ appetites:

This article makes an original contribution through the revitalisation, refinement and exemplification of the idea of the ‘critical juncture’. In the health and illness context, a critical juncture is a temporally bounded sequence of events and interactions which alters, significantly and in a lasting way, both the experience of the person most directly affected and the caring work which is done. It is a punctuating moment initiating or embedded within a longer trajectory and is characterised by uncertainty. As contingencies come to the fore, individual actions have a higher-than-usual chance of affecting future, enduring, arrangements. These ideas we illustrate with detailed qualitative data relating to one individual’s journey through an interconnected system of mental health care. We then draw on observations made in a second study, concerned with the improvement of mental health services, to show how micro-level critical junctures can be purposefully used to introduce instability at the meso-level in the pursuit of larger organisational change. In addition to demonstrating why scholars and practitioners should pay closer attention to understanding and responding to critical junctures we are, therefore, also able to demonstrate how their emergence and impact can be examined vertically, as well as horizontally.

The accidental grounded theorists

On Friday I had reason to ponder the relationships between theory and data, and the boundaries between different types of qualitative research. This was day two of my Working and Leading in Complex Systems professional doctorate module. What I discovered is that I may, in fact, have become an accidental grounded theorist. Or possibly not…I’ll let the reader decide.

During a talk about critical junctures I said how, in our recent paper, Nicola Evans and I had elected to lay out our theoretical contribution (i.e., our idea of ‘critical junctures’ as pivotal, punctuating, moments initiating or taking place within longer individual trajectories of care) ahead of displaying our data. We had done this even though our ‘theory’ had in fact been fieldwork-driven, as we then demonstrated in our article with extended, illustrative, extracts. Quite reasonably, in the classroom I was asked if we had therefore used a grounded theory approach.

This question got me thinking. My immediate response was that Nicola and I had developed a concept from empirical data but had absolutely not claimed to be ‘doing grounded theory’. In fact, the thought had never occurred to us (or to me, at any rate).

And there’s the nub of it. What does it actually mean to ‘do grounded theory’? Follow a stepwise recipe from a methodological cookbook? Or range freely over one or more sets of data in the search for new insights? Without wanting to suggest that ‘anything goes’ in terms of methods, I wonder if we can sometimes get too hung up on techniques and ‘rules’ when it’s the principles which really matter? In our critical junctures paper these included a commitment to the inductive ‘drawing out’ of conceptual insights from an analysis of talk and action. They also included the idea of staying close to our data, and of offering fieldwork extracts in support of the theory. I personally have no wish to agonise over what flavour of ‘doing qualitative research’ we have done here, and I’m also not sure that all of the finer distinctions and sub-divisions necessarily matter or even make sense.

But perhaps I’m missing something.

Learning about complexity and systems

Today has reminded me of the pleasures of university teaching. A day in a classroom with lively doctoral students is to be savoured. Most (but not all) of the group were nurses, and most (but again, not all) were completing the taught elements of their professional doctorate programme ahead of beginning their research.

The module is concerned with understanding health system complexity, and is liberally sprinkled with local research (my own included). Today we began with an overview of the territory, and then discussed policy and services at the large scale using the idea of wicked problems. Pauline Tang gave a fabulous talk based on her study of electronic health records, before we closed with a whistlestop tour of systems of work and divisions of labour.

We meet again tomorrow for sessions led by students, to think about trajectories and critical junctures, and to hear Nicola Evans being interviewed about change in organisations. I’m looking forward.

Using research

I very much hope that UK readers of this blog have enjoyed this year’s summer (which, at least, coincided with the early May bank holiday weekend). Right now we’ve been plunged back into autumn, or so it feels here in South Wales. Wind and rain are everywhere.

Here’s a wordcloud used during Friday morning’s teaching with students of mental health nursing, during which I shared something about COCAPP and other (past and present) research projects involving people working in the Cardiff School of Nursing and Midwifery Studies. One of the things I did was to draw students’ attention to my paper on complex trajectories in community mental health, as previously blogged about here. Unrelatedly, towards the end of Friday I also caught sight of some newly delivered reviewers’ feedback on a grant proposal on which I am a co-applicant. One of the points the reviewers made was to encourage us, as a research team, to plan to do more to get future findings into services and practice.

The first of these otherwise unconnected events was a modest attempt to close the gap between research and education. The second was a reminder of the importance of closing the gap between research and the world of health and social care. So with both experiences in mind this post is about getting research out of the hands of academics and into the hands of others who might use it: practitioners and students, service managers, policymakers, users, carers. Coming not long after my recent post on the assessment of outputs in the Research Excellence Framework, this post might also be thought of as an excursion into ‘impact’.

Within single university departments it ought to be reasonably straightforward to bring research and teaching closer together. This said, I can still clearly remember co-presenting with Cardiff colleagues at a nursing research conference in London in the late 1990s only to be told, by a student who had travelled from our own school, that she had had no previous idea who we were or that the research projects we had discussed were ongoing. That was a salutary moment, and since then I have taken opportunities to directly bring research (mine, my colleagues’, other people’s) into the modules I have led and contributed to. And of course, I am hardly alone in doing this kind of thing. But across the whole higher education sector demarcations are growing between ‘teachers’ and ‘researchers’, with universities routinely differentiating between staff on the basis of their expected roles. If researchers become less involved in teaching then the risk is run that naturally occurring opportunities for projects to be brought into the classroom, by those who are running them, will dwindle.

But if integrating research and teaching can be challenging then getting research findings out of universities’ doors for the benefit of all is harder still. In the health and social care fields the publication of findings in peer reviewed journals comes with no guarantee that these will be read, or used to inform anything which happens outside of academia. In nursing (and I imagine in many other practitioner disciplines too) this has often been seen as part of the ‘theory/practice gap’ problem. Nurses have spent a long time agonising over this, and typing some suitable search terms into Google Scholar produces some 200,000 documents (that’s the slightly obscured number circled in red in this screenshot) evidently devoted to its examination:

Nurses are not alone in having concerns of this type. The Cooksey review of UK health research funding talked about tackling the ‘translation gap’ through getting ‘ideas from basic and clinical research into the development of new products and approaches to treatment of disease and illness‘, and at the same time ‘implementing those new products and approaches into clinical practice‘. Universities are increasingly urged to do better with their ‘knowledge exchange’ activities. And, as we know, the Research Excellence Framework 2014 has introduced the idea of assessing ‘impact’.

‘Impact’ in the REF2014 Assessment framework and guidance on submissions document is defined ‘as an effect on, change or benefit to the economy, society, culture, public policy or services, health, the environment or quality of life, beyond academia‘. It’s about research being ‘felt’ beyond universities, and assessing this. The assessed bit is important in the formal REF exercise because impact (presented using case studies, and counting for 20% of the overall quality profile to be awarded to each individual submission) will be graded using this scale:

Four star Outstanding impacts in terms of their reach and significance.
Three star Very considerable impacts in terms of their reach and significance
Two star Considerable impacts in terms of their reach and significance
One star Recognised but modest impacts in terms of their reach and significance
Unclassified The impact is of little or no reach and significance; or the impact was not eligible; or the impact was not underpinned by excellent research produced by the submitted unit.

As in the case of the assessment of outputs I am struck by the fine judgements that will be required by the REF’s experts. I suggest that one person’s time-pressed ‘very considerable’ may well turn out to be another’s ‘considerable’, or even ‘modest’.

Issues of reliability aside, the inclusion of ‘impact’ in REF2014 has got people to think, again, about how to close some of the gaps I have referred to above. For researchers in health and social care there has been new work to do to demonstrate how findings have been felt in policymaking, in services and in the provision of care and treatment. Who would object to the idea that research for nursing practice should have benefits beyond academia? But as many of the documents I identified when searching for papers on the theory/practice gap (along with newer materials on ‘knowledge exchange’) will no doubt confirm, demonstrably getting research into policy, organisations and practice can be fiendishly hard.

There are many reasons why this is so. Not all research findings have immediate and direct applications to everyday health and social care. Even when findings do have clear and obvious application, university-based researchers may not be best-placed to do the necessary ‘mobilisation’ (to use the currently fashionable phrase), including in relation to knowledge which they themselves have created. And by the time peer reviewed findings have reached the public domain, policy and services in fickle, fast-moving, environments may have moved on. In cases where we think research has made a difference there is also the small matter, in the context of the REF, of marshalling the evidence necessary to demonstrate this to the satisfaction of an expert panel. In any event research is often incremental, with knowledge growing cumulatively as new insights are added over time. Given this we should, perhaps, have rather modest expectations of the likely influence of single papers or projects.

Beyond this it is always good to hear of new ways in which wider attention might be drawn to research and its benefits, and a rich resource for people with interests in this area is the multi-author blog and associated materials on the impact of the social sciences run by the LSE. This is a suitably interdisciplinary initiative, which can be followed on Twitter at @LSEImpactBlog. I recommend it (and not just to social scientists), and as a starting point its Maximising the impacts of your research document. This sets out to provide ‘a large menu of sound and evidence-based advice and guidance on how to ensure that your work achieves its maximum visibility and influence with both academic and external audiences‘, and as such has lots of useful observations and suggestions.

Critical junctures

How pleasing it is to report that the paper I blogged about in this earlier post has now been accepted for publication. Co-written with Nicola Evans this (re)introduces the idea of ‘critical junctures’ and will appear in Social Theory & Health. We draw on two project datasets and show how action at pivotal moments can set individual service user trajectories on directions which are hard to reverse. We also show how, in certain circumstances, small-scale critical junctures can trigger (or be used to lever) larger organisational change.

Next up will be the checking of page proofs, and advance online publication via the journal’s website. What we won’t be able to do for another 18 months is upload a PDF of the post-peer review manuscript to ORCA. This is something Palgrave’s copyright rules are very clear about. In the meantime here’s the abstract which will, of course, be freely available:

Hannigan B. and Evans N. (in press) Critical junctures in health and social care: service user experiences, work and system connections. Social Theory & Health

This article makes an original contribution through the revitalisation, refinement and exemplification of the idea of the ‘critical juncture’. In the health and illness context, a critical juncture is a temporally bounded sequence of events and interactions which alters, significantly and in a lasting way, both the experience of the person most directly affected and the caring work which is done. It is a punctuating moment initiating or embedded within a longer trajectory and is characterised by uncertainty. As contingencies come to the fore, individual actions have a higher-than-usual chance of affecting future, enduring, arrangements. These ideas we illustrate with detailed qualitative data relating to one individual’s journey through an interconnected system of mental health care. We then draw on observations made in a second study, concerned with the improvement of mental health services, to show how micro-level critical junctures can be purposefully used to introduce instability at the meso-level in the pursuit of larger organisational change. In addition to demonstrating why scholars and practitioners should pay closer attention to understanding and responding to critical junctures we are, therefore, also able to demonstrate how their emergence and impact can be examined vertically, as well as horizontally.

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.