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Mental health service users and carers as researchers: reflections on a qualitative study of citizens’ experiences of compulsory mental health laws. Damien Kavanagh , Martin Daly, Moira Harper, Gavin Davidson, Jim Campbell. Damien Kavanagh
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Mental health service users and carers as researchers:reflections on a qualitative study of citizens’ experiences of compulsory mental health laws Damien Kavanagh,Martin Daly, Moira Harper, Gavin Davidson, Jim Campbell
Damien Kavanagh Student Social Worker (former Carer Advocate), Queen’s University Belfast Martin Daly Service User Consultant (former Service User Advocate), Belfast Health and Social Care Trust Moira Harper Carer Advocate, CAUSE for Mental Health DrGavin Davidson Lecturer in Social Work, Queen’s University Belfast Dr Jim Campbell Senior Lecturer in Social Work, Queen’s University Belfast
Overview • Study • Context • Methodology • Themes • Summary of reflections • Advantages of this study • Limitations of this study • Discussion questions
Context • Increasing diversity • Integrated service – complexities • Legacy-related issues from the ‘Troubles’ (for service users and workers) • Community and voluntary sectors • Legislative framework • Partnership
Methodology • 2 Carer Researchers • 1 Service User Researcher • 2 Academic Researchers • Qualitative Interviews
Methodology • Samples • Open process • 6 Service Users • 5 Carers • Participants recruited through service user and carer organisations • Detention at least once
Methodology • Interview Schedule • Collaborative Process in Design • 4 Main Sections • Demographics • Initial Contact with Services • Admission and Inpatient Experience • Experiences of Recovery • 4 key areas at each stage: • Availability of information • Clarification of staff roles and responsibilities • Involvement in each stage • Satisfaction / Dis-satisfaction levels
Methodology • Thematic Analysis • Initially by service users and carers • Independent analysis by academic researchers • Comparison and Discussion
Ethical Considerations • University Ethics Committee • Before and during interviews: sensitive to the immediate experience of individuals • Clear information • Consent and anonymity • Support throughout and following interview
Demographics – Service Users • Age: 28, 21, 40, 34, 19, 31 • Gender: 2m, 4f • Religion: 5 Catholics, 1 Protestant • Hospital admissions: 2, 3&5yrs; 3, 2, 2& 20yrs, 4&9yrs
Demographics - Carers • Age: 65, 61, 46, 46, 65 • Gender: 3f, 2m • Religion: 5 Protestants • Hospital admissions: 6, 4, 3, 4, 3; 1985 - present
Mapping the Journey • 5 Sections: • A - Demographics • B - Initial Contact with Services • C - Admission and Inpatient Experience, leading to Discharge • D - Experiences of ‘Recovery’ • E - Other Comments
Service User Themes • Communication and Information • “I only remember the doctor; everything was withheld – all I knew, I was down, I was sectioned, getting pumped full of drugs. The doctor checked me and the next thing I knew I was detained.” • Care and Discharge Planning • “No, not in the slightest. Nobody. I was bunged full of haloperidol and drugs, and just not involved.” • Inappropriate use of low-secure Psychiatric Intensive Care Units (PICU) • “That felt like a punishment – I had to be on my best behaviour and do what I was told. There was no compromise; I was on obs and wasn’t allowed out. I saw ICU as punishment – do as you’re told or we’ll keep you here. It was just hell.”
Service User Themes • Institutionalisation • “I sat there and didn’t know what to do – I was so used to being interrogated and used to being questioned. I still don’t know what psychotherapy is.” • Compassion Fatigue • “ ... on the first admission they’re brilliant with you, but see after two weeks you’re part of the furniture, and it’s the same each time after. The very first time they were fantastic but the others weren’t.” • Attitudes • “The ASW’s manner – I remember all the lights being on and the blinds open. She said: “right, we’ve 20 minutes and then we’ve got to go”. I said “why?” She said, “You’ve got to pack and go”. She was standing up – I said, “what’s the rush? You’re scaring me”. She said “come on, get some stuff together”. I kept questioning – the ASW was looking at her watch, becoming agitated.”
Carer Themes • Information “This most recent time I got a letter a day or two afterwards.” • Involvement/communication/exclusion “Other than ringing us to let us know that he had been admitted. I can’t remember; he was transferred the last time and the ward rang us after. That was it.” “Not at all, my son was just handed to me when he was coming home. I don’t know what a care plan looks like; I’ve never had one.” “... my husband tried to hang himself five times on the ward in a month – he doesn’t know how it happened...... He hid behind the door, cut his bed sheets, went out to ask for a paperclip. He was given one by the nurse. He used the clip to pin 2 photos of the kids to his chest and hung himself. Another time I had to phone the hospital to tell them a window was loose as he got to the off licence whilst he was a detained patient.”
Carer Themes • Feelings/emotional impact/lack of support “None, I was given nothing – I ended up with my own CPN eventually.” • Follow-up “The first time they told me nothing – the CPN arrived at the door 3 months down the line. I remember constantly running to my doctor – He was the only support.” • Positive Relationship “She can relate to him, she speaks his language, speaks to us both and gives us options. We sit and we talk about what we would all be happy doing. She’s very caring and takes the time to talk to him when he’s well.”
“It was a privilege to be witness to the honesty and the thoughtfulness of the people we spoke with … ” Service User Researcher “This was the first time that I have taken seriously the prospect of a partnership with service users and carers as co-researchers and it has been rewarding as well as thought-provoking. Academic Researcher 1
“I was excited to be involved in this research because of the focus of the study on experiences of detention but also because it was my first experience of service user and carer led research.” Academic Researcher 2
“I initially felt enthusiastic and hopeful at the prospect of my involvement in ….. this research project.” Carer Researcher 1 “… when I was invited to get involved with the peer research project with carers it was a very interesting and humbling experience.” Carer Researcher 2
Summary of Reflections • Common view about the need to explore the impact of detention on the lives of service users and carers, expressed in different ways. • Academics were keen to use the project to confirm or deny what they suspected were coercive professional practices sometimes used when mental health law was being applied in these circumstances • Service user and carer researchers tended to view the process in terms of increased opportunities for participation and catharsis for respondents. • One of the carers had modified their views as they moved into a professional role as a student social worker.
Summary of Reflections • Tensions in the way that the constituent groups comprehended the research process. • The discourse and jargon of research methodologies had to be demystified if the project was to work. • Academics felt ‘nervous’ about ‘letting go’ or not being directly involved in the interviews. • Service user and carer researchers felt a sense of powerlessness until they began to grasp and influence the research design and process. • Empowering and illuminating for the researchers and the respondents.
Summary of Reflections • Using experiences to communicate with respondents to address the challenges of engaging with the emotive issues associated with detention. It is noticeable, in their reflections, the degree to which interviews had reawakened powerful memories and emotions in the interviewers. • The complementary knowledge and experiences that each constituency brought to the project. • Peer researchers gained confidence in carrying out interviews with respondents who shared similar experiences, and the consensus about the findings tended to confirm a sense of expertise across team members.
Final reflection • “ The actions of professionals before, during and after detention are very often not sensitive to the rights and needs of services users and carers. Despite this, there is a sense of optimism about the future, but only if mental health services are reconstructed to take account of the views of service users and carers.”
Advantages • The involvement of service users and carers brought a new dimension to the conventional academic approach to research in this field, particularly in terms of skills in communicating with peers. • There appeared to be a cathartic effect created by the participatory nature of the interviews that empowered interviewers and interviewees. • Service user and carer researchers became confident about the research process as the project developed.
Limitations • Not enough time was spent on preparing the researchers for the task, an education and training programme would enhance such studies. • The academics at times felt overly responsible for the processes. • There were concerns about the potential for interviewer bias, a more triangulated approach involving interviews with professionals might help capture a more holistic picture of the detention process.
Discussion Questions • If there is a growing interest in service user and carer led research projects, how can the academic community respond to this trend? • Should there be a balance in terms of academic and service user/carer involvement and responsibilities for these projects? • What are the educational and training needs of service users and carers and how can these be met? • Is it possible to develop enough capacity to enable service users and carers to carry out their own research?
