"….and that, I think, is the biggest message you can deliver because it's 'look, see me, this is what I have done, this is me and what can be achieved'"
The study team were interested to meet with people across Scotland who have been active in the public telling of their story of recovery from mental health problems. These are people who describe themselves as either recovered or in a process of recovery. The stories they tell are designed to counter the stigma of mental illness and to promote recovery.
Aims and objectives
Aim: to explore and identify how personal narratives are used in Scotland to promote recovery and social inclusion by mental health service users.
- identify the core conditions that support personal narratives as part of the recovery processes
- identify unhelpful practices that have hindered the use of personal narratives
- identify the range of issues and potential dilemmas for those people whose 'stories' have been used in the public arena for the purpose of health promotion and education
- facilitate the development of research capacity by service users.
This study took the form of semi-structured interviews with 12 individuals in six locations across Scotland. This was followed up with a focus group discussion with four of the same individuals.
This study found that for these mental health service users, the act of finding and then sharing their personal story with others has a cathartic and healing effect. Personal narratives can be understood as a major element of the recovery process. The service users we spoke with had the additional experience of sharing their personal story publicly, e.g. conferences, training events, DVDs, websites, newspaper articles and books. This report identifies that the loss of anonymity is the biggest dilemma that participants face and that this may expose them to discrimination and challenge their own mental health. The decision therefore to 'go public' needs to be well thought out with consideration given to possible consequences including those for family and friends. The principle of informed consent was suggested as the foundation for story telling.
The report identified there is a process involved with story development and story telling. We have called this the journey of story telling. This involves a cyclical process:
- creating and planning a story
- developing, editing and refining a story
- telling the story
- de-briefing, review and re-editing.
It was observed that each of these stages involves feedback to the person which can enhance self awareness and a positive personal identity. The report identified that support is a central pillar in relation to recovery and story telling.
Support is essential to lessen the risks and to enable the process to be empowering. The report found this takes four forms:
- emotional/relational - to foster respect and feeling valued
- financial - the effect of payments for story telling activities on benefit payments
- training with peers
- guidelines or examples of best practice.
The participants expressed support for the principle of guidelines but there was considerable anxiety that these should not be prescriptive. The feeling was that there would need to be flexibility in the application of such guidelines and that the individual storyteller needs to be in control of the process. There was no agreement as to the most appropriate title for such a document.
This report provides further evidence that the use of personal narratives adds to the process of a positive re-framing of personal identity for people who use mental health services. This suggests, at a general level, a need for enhanced awareness that personal stories are no more idle chatter; in view of this we suggest a conversation with interested parties and organisations in Scotland might well be timely.
The report highlights how there are both risks and opportunities for individual users of mental health services in relation to 'going public' with their stories. This is a delicate area that requires responsibility to be exercised thoughtfully and with care by service users and public agencies. Such discussions and decisions need to be based on sound principles and evidence of what works in relation to service user involvement. In our view guidelines are essential in this context and will be credible where these are informed through examples of best practice. These should not take the form of a tick box approach as individuals and organisations need to invest in the process by working from first principles and using a certain amount of creativity, otherwise this process will be reduced to simply another procedure. We would like to see examples of best practice in relation to story telling placed online on several major websites.
The process of story development and story telling needs to be enabled though support. The examples cited by the participants are related to peer support groups that are associated with recovery, either in relation to 'recovery courses' or locally based recovery networks. We suggest that a conversation about the sustainability of support would be useful and might focus on the value of investing in social capital.
As people who use mental health services increasingly use their personal stories to promote recovery and provide an anti-stigma message, it is important to ensure that best practice in this area is recorded and made available in an easily accessible format. This report highlights the issues and dilemmas associated with 'going public'. It records the considerable commitment by the individual participants and suggests that support in its various forms are key elements in the process of story development and story telling.
Further details from:
Applied Social Studies