Perspectives on Emancipatory Research Methods in a Service-User-Led Study
Pathways Research Team Galway
Introduction
This project originated out of a perceived need for an investigation of users’ experiences of the of mental health services in the Galway city area. It explores the experiences of 51 service users in West Galway. It was agreed that a participatory action research approach should be adopted. Given the lack of current research and policy on which to base future service development and the belief held by the originators of this project, namely that any development must place users’ views at the centre, we sought funding from the Western Health Board (WHB) to set up a research project carried out by service users and about service users. This project became ‘Pathways’.
Aims of Pathways Project
The aims of this project were twofold:
- To facilitate empowerment of service users
- To evaluate existing services and inform future developments
The team members were sourced through members of staff, word of mouth and personal contacts. The criteria for inclusion were simple, people who had used the mental health services and were willing to commit time and energy to the project. The group’s experiences varied from limited outpatient contact with the service to many and long, inpatient stays in an acute unit.
Design of Questionnaire by Group Process
Initially, because the team had no specific brief in terms of defining the research, there was a lot of anxiety in attempting to draw up a research proposal. It was decided to compare and contrast the different experiences of individual group members in an attempt to identify the points of concurrence and departure. The service users on the research team met as a group to explore their own experiences and constructed the questionnaire around emerging themes. This process was referred to as “mapping our pathways”.
Selecting our Sample
The West Galway Mental Health Service staff on the team selected an opportunistic random sample of 300 names. These people had attended the service, either as inpatients or outpatients, during the period June to December 2000. A consent form was sent to these 300 people and they were asked to return this if they were willing to participate in the project. Once the signed consent forms were returned, the research team gained access to their names. About 80 consent forms were returned out of a total of 300 (a response rate of 26.7%).
Results
Brief Summary of the Principal Themes Emerging from the Main Findings:
Demographics
For the first time we now have a profile of mental health service users in Galway city
- In this sample, we found that contact with the service was lengthy and began early in the lifespan
- The majority of participants (70%) at the time of the survey were single
- 67% were on social welfare, of which 69% were on disability allowance.
- It was of great concern to us to discover that two-thirds of participants were fearful of contacting the service and 85% had been ill for over 1-5 yrs before contacting the service.
- Even though so many were fearful of going for help, a massive 37% went alone (to seek help)
Treatment
The recurring theme for service users is the lack of communication between service users and service providers. Mostly participants’ felt that they did not know why various treatments were prescribed, they did not get enough information on treatments and they did not have a say. For example 73% of our sample would like to have had more information on their diagnosis.
The main issue to emerge in this chapter was the desire for increased involvement and collaboration in all aspects of care and treatment of service users. This is sharply highlighted by the section on the primary treatment offered, medication.
- Although 98% were prescribed medication, less than a quarter had been involved in planning their drug treatment and 40% did not understand why they were taking their particular drug.
- 67%, almost 2/3 of the sample, stopped taking their medication without consultation.
Unfortunately this lack of information, collaboration and involvement is replicated throughout this chapter on treatment, having obvious consequences in the area of discharge planning. Although it is not ideal that people are not involved in decisions about their care while in hospital, it is completely unacceptable that 50% of the sample had absolutely no say in planning their discharge.
Community Care
Similar themes relating to lack of service users’ involvement and poor communication emerge in this chapter.
| Casualty: | 87% reported attending casualty whilst experiencing a crisis after hours added to their distress. |
|---|---|
| Day hospitals: | 62% experienced boredom while in the day hospital |
| Training centres: | 71% did not receive any recognized qualification as result of their training. |
Taking into account the National Health Strategy’s vision and the above findings, surely service users, as consumers, must be encouraged to become full partners in service planning and delivery.
Aftercare
In Promoting Mental Health in the West (Evans & Jones, 2001), it clearly states that the vast majority (88%) of the public view mental health, in a negative way. How can service users possibly begin to integrate with the public in light of these findings and the following worrying statistics?
| Employment: | 94% of participants stated that employment was important to them, yet 40% were long term unemployed and nearly 70% reported receiving no help in seeking employment |
|---|---|
| Isolation: | 85% reported that their illness made them feel isolated |
| Social exclusion: | 71% reported they felt socially excluded. |
| Housing: | 14% reported experiencing homelessness since using the mental health services |
Aftercare, in our opinion is perhaps the most overlooked aspect of the entire service. Further, there is evidence that service users are not being enabled to reach their potential following contact with the services. As one user stated, “When you are sick, you learn (and I stress learn) to accept less”.
Summary
Of the 18 sections in this report, each one warrants further investigation.
Methodological Perspectives
Experiences of Mental Health Services From A User-Led Perspective - Galway City
It is our desire to cast some light on our unique and highly original research by exploring certain elements of our research methodology. We are exploring these issues in order to provide guidelines for those who may consider conducting similar research in the future.
Methodological Advantages
Mapping our pathways: i.e. brainstorming about our personal experiences. This process generated the information that was used in the construction of the questionnaire. Furthermore, this process facilitated the development of trust between all the team members along with encouraging an environment of openness and acceptance. It also allowed us to develop a strong sense of ownership of the project.
Facilitators: Both facilitators were particularly enthusiastic and committed to the project. They were very much part of the team and because of the high level of respect shown by them to the service users, they allowed us to reclaim our power as valuable, competent individuals, which in turn made it much easier for us to conduct the research.
Teamwork: As with any piece of group research there were minor conflicts along the way but throughout the research period, the individuals involved in Pathways always worked as a team. As a result, the finished product is a well-rounded and representative report of service users in general and not merely the more vocal members. Also, this allowed the development of lasting friendships.
Supportive System: We met once a week as a support group in which each member was given the opportunity to express their feelings and frustrations in a nurturing, supportive environment. This served to build both individual and group empowerment
Enthusiasm: As it was the first time ever that such a study had been conducted there was a lot of group enthusiasm and interest, which helped to keep the momentum going during the more arduous phases of the research. This said however, it should also be noted that the fact that this research was the first of its kind meant that the members could not be fully privy to possible pitfalls at the outset.
Summary - Advantages: The main point we wish to stress is that the process of mapping our pathways allowed us to deal effectively with challenges that arose.
Methodological Difficulties
Administration & Housekeeping: Various minor yet quite disabling administration faults arose during the research because we didn’t set up a proper system for handling the mountain of paper that accumulated. At the initial stages there was no summary of the prior research made in the field and as a result it was difficult to consolidate this information when it came to be written up. As no one computer was used during the write-up stage the group were working off different variations of the draft at times, which caused some confusion. Also, time scheduling to suit all team members on occasions also proved problematic.
Finances: The project was dogged by ongoing financial uncertainty. The payment was not a weekly wage but rather in the form of an expense-based allowance, which meant that the service users had control over the amount of time they wished to devote to the project up to a maximum of 20 hrs per week. However, administrative difficulties in accessing this fund meant excessive delays in payment occurred frequently. As with most research projects, Pathways ran over time. This meant that our original budget was exhausted and it was necessary to negotiate for an additional grant. We never knew in advance whether the extra money was available. The uncertainty was unreal. Huge commitment was demanded from the team members to continue working on a voluntary basis.
Lack of research experience: None of the Pathways team had experience using this type of approach, which led to some lack of clarity and direction. As a direct result, the team was unclear as to what to request in terms of research guidance. For example, we were unaware of the importance of the pilot study as a learning tool to critique the questionnaire. Therefore, we would recommend that service users adopting this approach, explore their needs and expectations of outside help.
Imbalance of Workload: As different members of the team had varying levels of commitment to the completion of the project, there was at times an uneven distribution of the work to be done. Members had to juggle the demands of other commitments such as work and family.
Lack of proper planning: Some areas of the research were not planned sufficiently in advance often resulting in time wasting exercises. For example, although graphs were drawn to represent the results of all eighteen sections of the report, in the final draft they were used in merely two of the sections.
Summary - Difficulties: The greatest challenge encountered was due to the pioneering aspect of this project. We had to make all our own mistakes rather than learning from the obstacles encountered by others, which we hope you can do by listening to our process. We did not have a sense of direction, other than our vision of improving services and the quality of life of service users.
Discussion
Factors that Influence Recovery
Turner-Crowson and Wallcraft (2002) list nine factors that influence recovery and it is with great pride that we can assert that all nine were achieved during this research. The factors are outlined as follows:
- Being believed in and encouraged by at least one other person who believes progress and change are possible;
- Developing perspective on the past including grieving over what is lost;
- Taking personal responsibility for one’s life, for example identifying preferred and unacceptable forms of treatment;
- Acting to rebuild one’s life;
- Developing valued relationships and roles, i.e. a support system;
- Changing other people’s expectations of what one can achieve, i.e. resisting an identity dominated by an illness model;
- Gradually gaining a sense of greater well-being and contentment;
- Developing new meaning and purpose in life including accepting personal limitations;
- Persevering through pain, struggle, symptoms and setbacks with an acknowledgement that recovery is not a linear process.
Practical Outcomes-Examples of Recovery Factors
This project required a leap of faith by all involved. It was never done before, there were no precedents and the service users had no prior experiences in research. There were many positive outcomes for us because of this project, in particular in relation to empowerment and recovery. There are some very tangible, practical outcomes as follows:
- Four of the team are founder members of Cruinniú, an original and innovative user-led drop-in centre, based in Galway city, which was established last year
- Two members of Pathways, plus other service users, completed the Open College Network of Northern Ireland’s accredited training in peer advocacy, under the umbrella of the Irish Advocacy Network
- Pathways team members had input into the accreditation process carried in West Galway Mental Health Services
- One of the service users on the team was invited to represent users and the Pathways’ project on the WHB’s Mental Health Strategy Working Group
- One team member was selected onto the NDA Research Advisory Committee
Conclusions
The emancipatory research model, as defined by Mike Oliver, describes the process we experienced.
As evident from the report, the main themes emerging are the need for improved communication and increased collaboration between service users and providers.
Many of the changes we recommend cost nothing to implement but require a change of attitude on the part of both service users and providers.
We believe that this project has enabled service users not used to speaking out, to be heard by service providers not used to listening and real changes have started to happen.