A DELPHI STUDY WITH SERVICE USERS – WHAT DOES RECOVERY MEAN TO SERVICE USERS WITH EXPERIENCE OF PSYCHOSIS?
Aim
The overall aim of this study is to determine the extent of the consensus among service users on the meaning of recovery from psychosis.
Objectives
To produce a list of statements related to the definition and conceptualisation of recovery from psychosis as identified through a search of the literature.
To circulate this list of statements to a service user focus group for consultation.
To format the list of statements into an online survey to be circulated more widely among people with experience of psychosis for extensive consultation.
Based on the above consultation process, to identify areas of consensus relating to the conceptualisation of recovery and extrapolate other key themes emerging from the survey.
Background
The word psychosis describes a common set of experiences including hearing voices, seeing things, unusual thoughts and unusual beliefs. Many people will have these experiences to some degree, but for some people experience of psychosis may interrupt or disturb daily activities or cause distress. Medically, psychosis is usually understood as a symptom of a psychiatric disorder such as schizophrenia, and from the traditional medical paradigm, people who experience psychosis are not expected to get better or recover.
Recovery in the field of mental health is a relatively new concept and encompasses ‘recovering’ in the traditional sense of ‘feeling well again’ but also acknowledging that recovery is a personal process involving rebuilding life, rebuilding self and hope for a better future (Pitt et al., 2007), rather than purely focusing on symptom reduction.19 Within the academic literature, service users themselves have led the ‘recovery movement’ by publishing personalised accounts of their recovery. This has brought a new sense of optimism for health professionals and service users alike. Health services and policy makers have taken on board this positive approach to mental health by advocating services which are recovery orientated.
Despite this interest in adopting a ‘recovery approach’, there is still no universally accepted and unambiguous definition of recovery. The word has a completely different meaning to service users compared with clinicians and academics. Generally the term recovery implies a cure or healing after illness or injury and a return to the normal condition. However, based on this connotation, few people with severe mental illness would ever be fully recovered.17
The service user movement in conceptualising recovery has moved away from professional classifications towards self-definition. Service users view recovery as something very different to clinicians18 and are not limited to purely considering recovery as the absence of symptoms, disability or reduction in the use of mental health services.76 There is a strong belief that recovery is different for everyone and that it is a complex process rather than an outcome or end point.19
As part of a larger project titled ‘Understanding recovery in psychosis’, this study will aim to address the gap in the literature by exploring what recovery from psychosis means to service users. Service users should be recognised as ‘experts on their own experiences’ (British Psychological Society, 2000) and as such this study will consult a large number of service users about what recovery means to them.
This study will use a method known as the Delphi process which aims to elicit the opinions of a group of experts and reach a consensus on a given topic. In this case, the topic is defining and conceptualising recovery from psychosis and the group of experts will be service users with experience of psychosis.
Method
Participants
Participants will be recruited via convenience sampling through mental health services (including Community Mental Health Teams and Early Intervention Services), non-NHS groups/voluntary groups and networks (such as MIND, RETHINK and the Hearing Voices Network), and advertising of the study by leaflets, posters, e-mail networks and voluntary organisations websites, social media and local media (including press releases). This is to ensure the study is advertised as widely as possible allowing as many people as possible to submit their views.
It is also hoped that recruitment can also make use of a new pilot system being implemented at Greater Manchester West Mental Health NHS Foundation Trust. This system (called FAIR-Free Access to Involvement in Research) allows all service users to opt in to hearing about possible research studies. The R&D department send letters to service users who have asked to hear about research. The letters do not give details of the research study itself but allow people to contact the research team directly for more information.
Participants will be included in the study if they have (or have had in the past) experience of psychosis, are over the age of 16 and are able to understand English.
Demographic details including age, gender, location and mental health diagnosis or description will be collected.
Participants who express an interest in the study will have the option of having the study information and link e-mailed directly to them to facilitate easy access to the study website. Participants who do not have access to the computer will be offered a paper copy of the survey to allow them to take part.
Participants who request a paper copy of the survey will also be given a paper version of the consent form. Participants completing the survey online will complete an online declaration which reminds them that once they submit their responses they are agreeing to take part in the research.
Procedure
The Delphi process will consist of three stages:
Stage 1
Elements identified as pertinent to the definition or conceptualisation of recovery from psychosis will be identified through a literature search and collated into a list of statements. This list will then be sent via e-mail and post to a panel of service users (experts by their experiences) to take part in this initial consultation phase. Those who agree to take part will be asked to rate, add to and amend the list of statements. Any amendments and new items (except duplications) will be added to the list to form the questionnaire for the next stage.
Stage 2
The finalised statement list from the first stage will be collated and formatted into an online questionnaire (with a paper alternative made available). Participants will be asked to rate the importance of each item, in relation to defining recovery, on a five point Likert scale (1-essential, 2-important, 3-do not know/depends, 4-unimportant and 5-should not be included). Responses to this stage of the consultation are analysed to inform the final round of questionnaires. At this stage, participants are asked if they would like to provide a contact e-mail or postal address so that they are able to take part in the final stage of the consultation.
Stage 3
In stage 3, participants will be asked to re-rate only those items that 70–79% of respondents had rated as essential or important during stage 2. The questionnaire will take exactly the same format as above, but will only include items which were rated as essential or important by 70–79% of the stage 2 respondents.
Materials
Materials will include advertising posters and leaflets, information sheets, consent, consent forms and the statement list in questionnaire format. These will be made available in an online and paper version where possible.
Analysis
Survey responses were recorded in a secure anonymised database and analysed by obtaining group percentages. The following cut-off points were used in relation to inclusion, re-rating and exclusion criteria for the items:
Items rated by 80% or more participants as essential or very important to defining or conceptualising recovery are included as standard.
Items rated as essential or important to defining or conceptualising recovery by 70–79% of respondents in stage 2 will be re-rated in stage 3.
Any statements that did not meet the above 2 conditions were excluded.
Potential risks/ethical issues
It is not envisaged that there will be any risks or ethical issues from taking part in this research.
Confidentiality
Participation in this study is completely anonymous. Responses are submitted online without entering any personal identifiable information or on an anonymised paper version. All responses are anonymous.
Right to withdraw
Participants are free to withdraw at any time without detriment to their care and this will be made clear on the information sheets and consent forms.
Data storage
Data will be held (in accordance with University of Manchester policy) for 5 years after the last publication of the study or for 10 years, whichever is the greater. Consent forms will be retained as essential documents, but personal contact details will be deleted following stage 3 of the study.
