“You’re all going to hate the word ‘recovery’” by DJMac

Disagree-2One of the problems with an aspirational and non-prescriptive definition of recovery is that it is hard to measure. The definitions most commonly featured in the literature share some elements including wellbeing or health, abstinence and citizenship.

Clearly if you can’t define it precisely, then it’s hard to commission services to deliver on it. In this case proxy outcomes are used. There’s a lot of debate amongst professionals on recovery definitions and measurements, but what about service users? What do they make of ‘recovery’?

In a teasingly titled paper (‘‘You’re all going to hate the word ‘recovery’ by the end of this’’: Service users’ views of measuring addiction recovery) Joanne Neale and colleagues scope the views of clients and patients in a variety of settings and run past them professional perceptions on recovery measures. How different are the perspectives?

What did they do?
Ran five focus groups in two English cities with using clients, drinking clients, service users in detox, in residential rehab and with people who described themselves as ‘ex drug or alcohol users’. The numbers are small (44 service users), but this is qualitative research, so we’re looking for nuance, themes and meaning.

What did they ask?
Researchers asked service users to take a look at a list of 76 measures of recovery provided by ‘senior addiction service providers’. The list contains items as apparently inconsequent as ‘going to the toilet regularly’ and ‘dealing with toothache’, but also has enough meaty content (‘reduced drug use’, ‘using time meaningfully’) to make it look robust.

What did they find?
Nine themes came out of the research with reasonable agreement across the groups:

  1. Expecting the impossible: service users felt that service providers expected more of them than was reasonable.
  2. Outcomes that don’t capture the effort involved in recovery.
  3. The dangers of progress (e.g. confidence turning into complacency)
  4. The hidden benefits of negative outcomes: affective states in early recovery as indicators of change or tiredness being evidence of doing the work.
  5. Contradictory measures: the apparent finding that some recovery measures sit in opposition to each other (e.g. reduced drug use vs. abstinence or independence vs. seeking help and support)
  6. Failure to recognise individual differences: programmes being too generic.
  7. Entrenched vulnerabilities: resistance to some issues (e.g. trust) because of experiences and perspectives and this not being recognised
  8. Getting service users’ feelings and behaviours wrong (e.g. measuring getting appetite back when appetite was good all along)
  9. Getting the language wrong: outcome measures clearly designed by people who didn’t have experience of addiction and recovery.

Service users experience recovery as a process and personal journey that is often more about ‘coping’ than ‘cure’.

Involving service users in designing measures of recovery can lessen the likelihood that researchers develop assessment tools that use inappropriate, contradictory or objectionable outcomes, and ambiguous and unclear language. People who have experienced drug or alcohol problems can highlight important weaknesses in dominant recovery discourses.

I wonder if recruiting people who described themselves as being ‘in recovery’  or those in longer term recovery post-treatment would have added slightly more nuanced views or at least broader perspectives. I guess if you ask a wide range of people to comment on 76 points you will have a hell of a lot of information to make sense of.

I have to say that this is an incredibly good effort in that regard. It must have been a challenge to identify the 9 strands and lay them out so clearly. However now that you have these, what you do with them is harder still.

The point that’s made here is that it is not possible to have a reliable single tool that measures recovery. Recovery is a complex process and it’s not fundamentally a clinical journey, but a social one and doesn’t fit under the microscope easily and resists simplistic analysis.

Then there’s the issue that if some of points had been explained or dissected a bit, a rationale given say, then there may have been more agreement between professional markers of recovery and service users’. The comments of service users bring this paper to life and I really, really wanted to be there in the midst of the discussion. That would have been a lot of fun.

To be fair, the authors do acknowledge this – the idea that some of the conclusions might have worked out differently if feedback had been allowed. I didn’t end up hating the word recovery, but I did struggle to make sense of the meaning of the findings given some of the caveats.

Again I think folk who are a bit further along the recovery path would have had a different take from those actually in treatment. Maybe that’s what the researchers will do next; bring the stakeholders together and get some discussion going.

Insightful quotes from the research

On the nature of recovery
Thus, our findings support Laudet’s argument that recovery is experienced as more of a process than a fixed state or end point (Laudet, 2007).

On the reality of recovery
Recovery is often more about ‘coping’ than ‘cure’; for example, managing negative feelings and bodily changes rather than trying to prevent them from occurring or denying their existence.

On the paradoxes
Recovery will require balancing acts which involve developing confidence without becoming over confident; taking control whilst also handing over control to those who might help; acknowledging the need for both dependence and independence; combining self-belief and self-doubt; and being supported whilst supporting others.

On the dilemma of high aspirations
If we set expectations too high, we risk further excluding those who are already marginalized; if we set expectations too low, there will likely be little satisfaction in making progress.

On changing things for the better
Whilst undoubtedly an important scientific exercise, the clinical utility of measuring recovery will almost certainly be maximized when people who use services engage in the process because they find it interesting and helpful, rather than because it is imposed upon them by a target driven treatment system.

Neale, J., Tompkins, C., Wheeler, C., Finch, E., Marsden, J., Mitcheson, L., Rose, D., Wykes, T., & Strang, J. (2014). “You’re all going to hate the word ‘recovery’ by the end of this”: Service users’ views of measuring addiction recovery Drugs: Education, Prevention, and Policy, 1-9 DOI: 10.3109/09687637.2014.947564