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

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ResearchBlogging.orgOne 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

Conclusions

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.

Reflections

ResistanceI 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

 

    8 Responses to "“You’re all going to hate the word ‘recovery'”"
    1. Peter Sheath says:

      Now this is a really interesting piece of work. I’ve always said that the subjective experience of people in receipt of treatment is vastly different than that of the policy makers and treatment providers. Take none attendance for appointments for example, providers talk about people being chaotic, uncommitted, unmotivated, unable to prioritise. Whilst service users talk about inconvenience, not liking their worker, not getting what they feel they should be.
      I’ve just posted a TED talk by a research scientist called Uri Alon and I think he nails the problems we continue to encounter by being outcome focused. We, as clearly demonstrated by this paper, forget the process and become frustrated and stuck when people fall short of the proscribed outcome. I know we do need some sort of definitive state that is our collective ambition but perhaps, rather than it being concrete, it needs to be fluid and adaptable, perhaps more aligned with what people want rather than what we think they need?

      • djmac says:

        I agree, this was a really interesting read. As I said in the blog, I ended up wanting to be part of the discussions. You can’t say that about all research!

        Wants and needs are always in tension and of course both wants and needs are not binary, they are spectrums and nuanced and change according to a variety of circumstances. Trying to deliver high quality treatment that gives folk the best of all worlds is a huge challenge.

    2. Innocent Abroad says:

      I have been recovering from alcohol abuse for well over 16 years. I now realise that at no time in my life have I been free of a crutch, be it childhood fantasy & aspiration, political activism, alcohol, or therapeutic support (including my children’s love, which so contrasts with what went on in my family of origin). In detox I promised myself “I’m going to take all the help I can get” and the truth is that I need to repeat that to myself all these years later.

      In discussion with a good friend over the week-end, he said to me “stick with your Group therapy, however painful it is” (and it is) “don’t go back to A.A. – they’re all mad there.” From my recollection of the Fellowship – I haven’t been to a meeting in three or four years now, if not longer, he’s right. Not as bad as when they were drinking, and almost certainly not as dangerous to know – but sane? I am beginning to think that sanity is something I shall no more experience than I shall walk on a planet in another galaxy.

      I don’t think my experience of “recovery” is in any way special or different. There is no “bridge to normal living”, because alcohol (or whatever cocktail of drugs any individual used) was only a crutch. And if you take a crutch away, either the patient falls over or s/he gets a new one. But they stay disabled. And this is the truth that neither the Fellowships nor the “recovery professionals” dare speak. I will be interested to see the reaction to this comment here.

      • djmac says:

        What’s the difference between a crutch and a support I wonder. We all need supports, but I guess there are healthy supports and less healthy supports.

        You really don’t like AA much do you? Sweeping statements like ‘they are all mad there’ are clearly not accurate, pretty disrespectful and not very helpful in my view.

    3. I think this article is really necessary. I am speaking from a user perspective. When people are in so called ‘recovery’ it is dividing everybody and users or ex users are turning against one another. It is not right. using the word Clean is derogatory. Oh are you not Clean yet??? This is the kind of language some people have to put up with. Recovery vs Abstinence. That is what it is about. You are supposed to be Clean. They do not explain RECOVERY enough.
      Thank you
      I have been in MANY groups and run many groups so I know what I am talking about

    4. Robert McGregor says:

      Good work. No big surprises there. I think it is important to remind services that the objectives of the service need to be constantly reviewed to ensure that they meet the objectives of service users – but also of the communities within which they are embedded. It is hugely important for workers to remember that what may be straightforward for them – for instance: remembering appointments, making it to appointments, getting to your group instead of turning on daytime TV and vegging out, are often significant hurdles for service users and should be celebrated when they happen, identified as achievements and support should be put in place if they are not happening. Little things like text reminders, “check-in” texts or calls being free to the user, and many other things can establish that all-important sense of being valued.

    5. Carl Cundall says:

      Great article, I was interested to hear what was said about aspiration. The UK treatment sector has for decades had virtually none for the people it was set up to help. The drug strategy changed in 2010 but for most workers agencies and service users who still populate it little else has. In Sheffield we still have 1000+ on long term high dose methadone scripts with little hope of anything changing other than the nameplate over the door at the clinic. As the expensive and pointless commissioning circus rides in to town.

      • djmac says:

        Thanks Carl. Your comments reminded me of a recent blog where I had a think about low aspirations versus the evidence of what actually does happen. I guess we need a recovery movement, peer support, service user involvement and recovery advocacy because in some places the bar is still set very low indeed.

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