Social Work in Health

How is your ethics committee dealing with inclusive research?

Social work is a social justice project and in our teaching we alert our students to structural factors in our cultures and societies when they have limiting implications for the opportunities of particular groups. This is inherently linked to the empowerment project. Whether for homeless young men, women affected by domestic violence or people with a mental illness we are committed to advocating for their access to services, supporting their development of their own confidence to speak up and working for social change that validates their right to be heard.

In the study of disability researchers have made important progress in the inclusion of these excluded voices. As a social work researcher this is really exciting stuff. The voices of children, the intellectually disabled and other ‘vulnerable’ people will increasingly be heard and included in the knowledge base of western social research.

Historically ethics committees have been inclined to protect these people from research on the basis that they may not have the capacity to give consent (children, intellectually and mentally disabled) and that they require protection.

There is a power disparity, at least potentially between any researcher and their participants. The researcher establishes the parameters of the research including its conceptualisation, how that conceptualisation will be operationalised and what and how it will be measured or characterised. This is equally true for quantitative research where values are embedded in statistical processes, choice of variables and measures, prior research and research procedures. It is more obviously true of qualitative research though more acknowledged.

Managing this power disparity is of concern to ethics committees. In research with aboriginal Australians these can be referred to aboriginal ethics committees. If those other voices are going to be included in research and thus our knowledge base, our ethics committees will need to be able approve research in which they can be included and their safety to do so ensured.

One of the issues that arises from this is that of consent. Typically we have a participant information statement and and a participant consent form. While ethics committees encourage us to use accessible language they still tend to be formal, they require a signature and of course literacy.

Some alternative ways of giving consent have emerged including: if the person turns up to participate in a research activity, they are deemed to have consented. This would be predicated on them knowing what they were getting themselves in for. This can be done by verbal explanation and consent collected by voice recording. This recording can include any discussion or clarification that takes place.

Instead of expecting people to hold onto their participant information statement, the purpose of the research can be re-stated at each contact and commitment to not affecting any service, and freedom to withdraw at any time also re-iterated at each contact.

What strategies for inclusion have been approved by your ethics committee?

A Book Review

Ann Taket, Beth R. Crisp, Melissa Graham, Lisa Hanna, Sophie Goldingay, Linda Wilson

This is where the left right divide often pivots. Should we bother with the wellbeing of people who are affected by disadvantage or should we leave it up to them. Ergo, is social disadvantage the fault of the individual or a structural issue. Pretty obviously both but we’ll tend to cluster around ‘yes, a humane sophisticated and wealthy society should attempt to ameliorate the worst of structural disadvantage’ and ‘no, we can’t afford to help people who don’t help themselves and shouldn’t be indulging in a ‘nanny state’.

This book is for people who observe the structural issues that trap some people, families and communities and believe that reducing these impediments is an essential social and economic investment.

Taket et al’s (2009) previous volume Theorising Social Inclusion looked at the dynamics of structural and cultural inclusion and exclusion. In this new volume they make a worthy contribution to the task of  providing signposts to action.

The 20 chapters are grouped in seven parts: Introduction (Scoping social inclusion practice), Practising inclusion in policy, Practising inclusion in service design, Practising inclusion in service delivery, Practising inclusion in community life, Practising inclusion in research and the Conclusion (Implementing the social inclusion agenda).

In Part 5, Inclusive service development the chapter by Pollock and Taket,  Exploring a whole-of-organisation approach in the community service sector there is a detailed indication of the type of methodology required to address disadvantage at the organisational level. This is rather lovely in how it brings into focus the paternalistic and disrespectful way many of our human services are delivered. Not that the chapter critiques others but it does specify the processes and challenges of being mindful and purposeful in the attempt to be inclusive across three programmes in a large non-government organisation. Six months to build the required relationships and engagement alone. Straight up it is clear the impediments to being inclusive; the expense of the time required alone, it is so much easier to just dump a programme on top of those in need and then if it doesn’t work blame them.

The challenges of using ‘experts by experience’ in a service development or research team are shared and grappled with here and in Wilson and Campain’s, chapter 16 Recognising the value of social relationships as a process of inclusive research. In this latter they describe how inclusion could be somewhat marginal according to the ability of some of the people involved, but that marginal  involvement itself was valuable.

I was also taken by Foster and Freeman’s chapter 17  Examining the notion of informed consent and lessons learned for increasing inclusion among marginalised research groups. In particular the observation that formal Participant Information Statements and Participant Consent Forms ‘can stifle participant recruitment’ in the wider population, quite aside from any desire to include ‘minority or socially excluded groups  (who) are underrepresented in Western research’. They make a case for further training for ethics committees to understand alternative forms of consent especially in non-invasive social science research.

Practising Social Inclusion is a singularly useful volume for those genuinely interested in the lived experience of people who are affected by disadvantages of all types, and actually want to involve them in the process of collecting and using that knowledge.