The idea that research should be done with rather than on people who use services, who are subject to social policy interventions or who might be described as ‘vulnerable’, is no longer the radical challenge that it once was. As Aldridge notes, key research funders in health and social care require evidence of how such people are being involved in research. ‘Doing PPI’ (patient and public involvement) is a job description for some within the NHS and those teaching social workers are including service users in recruiting students and preparing them for practice. But this does not mean that such practice is done well, nor does it mean that the challenge is removed. There is continuing space for books that consider what participatory research means in practice, what it can achieve and what are the personal, political and ethical challenges for researchers, those they research and those they seek to influence.
The particular focus for this contribution is ‘vulnerability’: how it is defined and might be created, what are the different sources of vulnerability and what that implies for research methodologies and relationships. Aldridge's interest is in those who are ‘not connected to, or part of, a recognised organisation, locality or community’ (p.10). She usefully emphasises the contextuality of vulnerability and thus her approach is to use case studies of research with people whose vulnerability has different origins and expressions to develop her argument. She considers research with children and young people, specifically young carers; with people with learning difficulties, and with women who have experienced domestic abuse. In each case she starts by reviewing both the issues associated with vulnerability and those relating to research with individuals in these situations. She then discusses specific examples of participatory research, most of which she has been involved in herself. The methods she describes and advocates are narrative methods, utilising different means, including the use of photovoice, to enable individuals to tell their own stories. Her final two chapters deal with general issues relating to the analysis, interpretation and use of data generated from such research, and propose a ‘participatory model’ that can be used, she claims, to advance such approaches.
Any book that adopts a case study approach can be critiqued for what it does not include. Obvious ones here would include, for example, people with dementia. But for those wanting to work with individuals in the groups discussed this book is a useful source of ideas and information about what others have done, as well as enabling a way in to the complexities of what it means to be vulnerable. My reservations are not about content, but about style and approach.
I found the accounts of projects somewhat bloodless and lacking in emotion. Aldridge rejects a tendency on the part of some researchers to spend as much time reflecting on their own reactions and experiences as those of the people they are researching and I have some sympathy with this. But I had no real sense of the author and of the relationships she developed with those she was researching. And since the relational nature of participatory research is fundamental in terms of both methodology and ethics, it is important to understand the often messy, difficult, but also exciting and fun experience of working with people in research. Aldridge suggests that what is missing from many discussions of participatory research are ‘detailed descriptions of the time, energy and space needed to develop trusting relationships based on mutuality, understanding and empathy with research participants’ (p.138/9). But I wanted her to offer more descriptive accounts to leaven the rather abstract discussions she presents. I also found the language rather laboured and pedestrian in places – long sentences with lots of sub-clauses and qualifications in parentheses. This contributed to a sense of distancing from the issues she was discussing.
Aldridge makes the important point that we need to be thinking not only about how to research issues specific to the experience of, for example, living with profound learning difficulty, but also to find ways of including people with learning difficulty in general population research. This is not really developed and the challenges of including the narrative methods she advocates alongside other methods are not addressed. Her focus on individual subjective accounts does highlight the potential for deep insight into how people make sense of abuse, being a young carer, living with a learning difficulty, and how subjective interpretations may be at odds with those of researchers who do not have such experiences. But she has little to say about how this contributes to analysis of structural inequalities and how theory and subjective experience together can inform an even deeper understanding necessary to achieve social change. Whilst recognition of unequal power relations is central to her discussion and her aim is to realise the transformatory potential of emancipatory research, the book is rather quiet about the politics of this. From a social policy perspective this is one of the key challenges for those of us who genuinely agree that research with people whose lives are impacted by social and public policies should be influencing those policies. The ‘single human voice’ (p.120) she promotes through this work may never be loud enough to drown out other influences.
