M A Lyons : December 2012
How does the application of a recovery model/approach improve the quality of a service users life?
This is a short paper exploring how application of the WRAP recovery model (Copeland 2000) might improve the quality of service users lives in Wales. This will be explored using an RCT (Randomised Control Trial) methodology (Bowling & Ebrahim 2005). “RCTs are quantitative, comparative, controlled experiments in which investigators study two or more interventions in a series of individuals who receive them in random order” (Medicine.net.com 2012)
There are numerous recovery approaches (Barker 2001, AA/NA 1939/2001) but it is this model which has been evaluated in the US with RCT methodology (Cook 2011), and consequently, supported, in the important NREPP recommendations[1]. Is this ‘success’ transferable to Wales?
Definitions/discussions of both ‘recovery’ and ‘quality of life’ are contained in appendix 1. Space precludes further detail but how a phenomenon is defined may be relevant in research.
Research Design: Schultz & Grimes cited this method as the “Gold Standard of clinical research…no other approach surpasses simple randomisation for the prevention of bias” (pp 515 : 2002). If the model is to be adopted and funded for treatment in the UK, then a successful RCT study would accelerate acceptance (NICE 2005). Additionally the experience of subjecting a recovery model to this methodology is unusual (Cook 2012) and the American study offers a springboard for learning from this experience and a potential comparative base.
Disadvantages include : achieving proper randomisation and correct study/trial procedure is challenging and time consuming, allocation concealment can be difficult and RCTs are generally costly (Sapsford & Abbot 1992). External validity from country to country will vary (Black 1996), and the successful research outcome in the US is no guarantee of success in Wales.
Contrasting an RCT approach to an auto/ethnographic approach from the qualitative tradition (Silverman 1997), it might be argued that each person’s experience of mental illness is unique, and thus each person’s researched treatment should be uniquely tailored/researched. (Roth 2005, Danahay 1997) This approach would involve an in depth study of inevitably a sample of many fewer clients yet surfacing richer qualitative data. In this approach there would be an acceptance of bias, even a celebration of it (Moustakas 1990), an acknowledgement of the researcher as part of the picture - the researcher could even be the patient (Romme et al, 2009). Disadvantages include difficulty in analysing and generalising from the data (Silverman 1997), even if this is desirable, and in picking out implications for future treatment across the service[2] and/or getting NHS support/funding for the latter.
Balancing the above, (and recognising that I am comparing apples with pears) then I would select an RCT approach for reasons of funding, support (Rees : 2003) and for the experience of doing an RCT study with a recovery model plus the opportunity for international comparison.
Implementing RCT
Sampling To effect ‘simple randomisation’ of the sample, the sample also needs to be taken from the general population, it should be big enough, and the C and E groups of similar size (Schultz 2002). Mirroring the US, the sample will be of SMI (Severely mentally ill) population currently using services – therefore the population is already ’stratified’ (Tilling, 2005) – thus limiting the generalizability of findings but conversely enabling the study to focus.
Size & Proportion To compare with US, a size of around 900 is needed for initial screening. Percentages should reflect the populational tendency for SMI which currently stand at around 1.5% for Bi Polar and Schizophrenia, 4-5% for personality disorder and 8% meeting criteria for depression & anxiety (Halliwell 2007). These are quite comparable with US statistics (US c1% higher) for the same illnesses (NIMH : 2012). Limitations include smaller percentages actually presenting for treatment and the figures not accounting for co morbidity and substance misuse -although probabilities could be factored in for these elements (Tilling 2005).
Ohio’s population is 11.5m whilst Wales’ is just 3m so the study may need to go further afield, trying to retain the urban, suburban and rural typology (Cook 2012) - comparable with US but prioritising integrity with the UK human geography. In the US confining the study to Ohio was also seen as a (pragmatic) limitation; the same could be said if the study were limited to Wales.
C versus E In terms of the ‘control’ group Tilling (2005) recommends a ‘completely inactive placebo’ (pp91) but recognises the questionable ethics of offering no treatment in some cases. In the US study members of control received other treatments and this was acknowledged (Cook 2012). Wales will need to consider how control treatments might vary and influence this element of the study.
‘Blinding’[3] (Schultz 2010) the sample might be difficult with implementing something so obvious as the recovery model – so here there is likely to be some respondent and interviewer bias (Tilling 2005). Finally ‘allocation concealment’[4] (Sapsford and Abbot 1992) is important in RCT and robust advance planning could address this (Tilling 2005).
Data Collection
Data should be collected beforehand –via a pre survey evaluation (Tilling 2005), which offers a starting point for a comprehensive statistical analysis. During the study data should be gathered at regular intervals. Interim analyses enable a surfacing of unexpected issues during the study (safety, environment, sudden illness etc). It is important to keep the ‘confounding variables’ (Schultz 2010) low– an obvious one being differences between the facilitators’ styles and how they work with SUs on ‘WRAP’. In the US study this was addressed by training ‘experienced’ facilitators via a ‘fidelity assessment’ (Cook 2012) to ensure delivery “using the manual and maintaining fidelity” - the emphasis was on a “standardised curriculum” with as little deviation as possible. On site observations were frequent, telephone supervision was weekly and any “drift” was “addressed” (Cook 2011 Slide 19)
Here it is interesting to reflect on the tension between the research method and the integrity of the model - how realistic, ethical or desirable is it to deliver the model to individuals in exactly the same way? In the keenness to attract funding/support –could ethical tensions get minimised/denied/ignored? People are not the same and to treat them as such reduces the chances of building a truly facilitative relationship which is core to sustainable change (Rogers 1951).
In Wales there are currently few experienced facilitators of the model and significant up front training would be necessary – and expensive. The investment would therefore be risky and possibly wasteful? – indeed this could be an argument to reduce the study to a pilot initially.
Data Analysis
Statistical analysis is core to making inferences and central to the RCT methodology. Tilling recommends that there “should be a detailed analysis plan specifying covariates to be included in the regression model for final outcome” [5] (pp509 : 2005). She also argued that statisticians should be ‘blind’ to the treatment allocation codes until final report –but understood this may not be practical. The rigour of the mathematics cannot be underestimated and it is essential than an experienced statistician be involved in the research from start to finish.
Limitations include the ‘missing out’ of data and the non monitoring of withdrawal information. This is known as the ‘Intention to treat analysis’ (Tilling pp509) – where it is very important to retain/analyse figures for withdrawals during treatment – such comparisons of those who did and did not adhere to the treatment allows for the bias to be assessed and then compared with the control group. Without this, credibility and internal validity shrink (Rees 2003).
In terms of the analysis and reporting of the data, the international CONSORT 2010[6] statement (Schultz 2010) provides 25 extremely useful guidelines for reporting on RCTs and has been referenced in this short discussion.
Evaluation 10 evaluative tools were used in the US study including the Recovery Assessment Scale (Corrigan/Giffort 1999, recommended by Burgess 2011 who found the scale to be internally valid & robust) and the WHO QoL scale, to evaluate change. I recommend that a study in Wales do the same for comparative purposes.
These allow for extensive statistical analysis. A limitation not acknowledged in the US study relates to literacy skills/dyslexia and any support offered for those who struggled with questionnaires and this may have interfered with results. CONSORT (Schultz 2010) recommends full discussion of the limitations and problems associated with RCT studies. However the US noted the limitation of ‘self’ reporting. In Wales we could include a more comprehensive picture based on the observations of significant family/friends/professionals and research for appropriate evaluation tools constructed for this purpose.
In the US study qualitative data was also surfaced through individual reports of participants. If we added this into the Welsh study it might lend access to a cultural comparative dimension.
Conclusion
The WRAP model relies on the individual’s motivation to move forward, however research suggests that external factors like discrimination and absence of “crucial resources and support” can have a detrimental effect on MH (Davidson 2010). RCT can be ‘reductionist’ (Parahoo 2006) and exclude what is difficult to quantify. If significant factors get ignored, this could result in the study becoming less ‘valid’ (Rees : 2003) . Green (2008) reminds us that the relationship between clinician and SU is central and that the approach to recovery must be collaborative. This raises ethical tensions about potentially inflexible facilitator adherence to the ‘handbook’ on the one hand and ‘Facilitator Values’ on the other (Copeland 2011) – where the latter clearly place a high significance on ‘honouring’ the SUs as unique individuals. Can the Copeland model be appropriately implemented within an RCT framework? The discussion raises questions about the model’s internal consistency and congruence (Heron : 1988).
Klapheck’s work (2012) in Germany noted, like Copeland, positive experiences ascribed to psychosis but argued for a more “biographical and in depth psychological orientation to treatment”. This fully recognises the individual SU experience. Thus implications for methodology might lead us back[7] to arguing that the auto ethnographic (Roth 2005) and narrative methodologies (Clandinin : 2000) may be more valid/sustainable for measuring ‘talking’ treatments of SMI than RCT in the longer run.
Is how we treat and involve service users as important as the treatment that we offer them?. What are the implications of this for research methodologies?. RCN argue that ethical research should be done with individuals not ‘on’ them (pp4: 2004), further that SUs should be involved and protected.
Could this mean that treating-researching staff don’t need to behave as robots? Conversely SUs are entitled, as any other group, to access treatments which have been robustly researched. Robust doesn’t need to equate to rigid though.
Where are the lines drawn in practice? Should they be reviewed?
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Appendix 1
Copeland (2000) advocates 5 key principles in (personal) recovery and these are: Hope, Personal responsibility, Education, Self advocacy and Support. Cavelti (2012) distinguishes between 2 kinds of recovery a) clinical recovery (meaning reduction in symptoms) and personal recovery (see Copeland) and argues that both are important. There are many perspectives on recovery (Dodge 2010, Darcy 2010, Rush 2011). Important critiques have included the extent to which people of other cultures (eg Asian) and people at either end of the life spectrum really ‘identify’ with the concept (Lai 2010) (Bowl 2007).
Quality of life (QoL), like recovery, is multi layered but fundamentally includes physical, safety, relational and employment needs and tendency toward depression (WHO 2004).
Both QoL and recovery are positively correlated with supportive social/family networks and structured daily activity (De Maeyer 2011; Sibitz 2011) and negatively correlated with depression (Sibitz 2011; IsHak 2011).
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