perspective of the patients who attend these sessions, they also gain from the experience. They may bring a stoma bag to show the staff and explain how they manage. Others prepare information ahead of time that they think will be useful for the nurses. Such material is distributed in handout form. It is clear they want to be heard, as this kind of participation is offered, not requested. Ostomates who have done this voluntary work report great satisfaction in having the opportunity to share their story with interested nurses. Nurses can be seen leaning in, nodding and engaging in active listening. The room is usually abuzz with conversation and learning.
Feedback from ostomates about being involved in the group
Qualitative evaluation has been conducted among IOIG participants. Key areas repeatedly voiced by group participants in response to questioning about their experience of the group and whether/how it helped relate to:
1 The relational aspects – connecting with fellow ostomates:‘It is just so nice to connect with others going through the same journey and struggle.’‘Talking to others helped me realise I wasn’t alone and some issues I had they also had.’
2 The informational aspects:‘I get tips on managing my stoma… this is so helpful.’‘I’ve learned different methods of dealing with my bag.’
The following statement from a long‐standing group participant offers a sense of what involvement has meant for many who participate:
‘I have found group to be so very helpful. In my early days it was just really nice to know that I wasn’t alone and I was a little surprised as to the amount of people and the varied reasons for their ostomy. Talking with the other members has given me an insight as to what to expect in my new life. An example of this is swimming … others said they go every day and that when I finally took the plunge – I would look back and wonder why I was so worried. I took the plunge and they were absolutely right! Another is travelling. I have listened to others talking about how they travel with their ostomy. I have yet to travel overseas but have done a few nights away now, so I’m getting a bit more confident. Just going to the meetings has given me more confidence, and I now feel that I am ready to talk about my experiences and help any newcomer to the group.’
Case 2 Recovery courses in municipalities in western Norway
The course ‘My life, my choices’ was developed in partnership between people with lived experience of mental health problems and/or substance abuse and people with professional experience of working in mental health and substance abuse services. The principles for course development were taken from Recovery Colleges (Cameron et al. 2018; King and Meddings 2019). All activities are co‐produced by participants and professionals. Course participants are understood to be participants rather than patients, and each person chooses what he or she wants to learn (Perkins et al. 2012, p. 4).
The model challenges the traditional understanding of it being the professionals who have the most important knowledge and competence. The professionals and the people with lived experience learn and create together, valuing lived experience equally with professional experience. The model also challenges established understandings of roles. Professionals and service users are all participants, and all participants contribute. Thus, the privilege of being of help to others is also experienced by persons who traditionally would be receivers of support (Eriksen and Storesund 2019).
The course
‘My life, my choices’ runs over five weeks, with one theme covered each week, and meets for two days a week. The facilitators (course leaders) are one person with lived experience of mental health problems and one health professional. The participants are service users in the municipal mental health services and healthcare workers in the same services. It is voluntary to take part.
The participants write individual goals at the start of the course and have the opportunity to work with these throughout the course. The ‘homework’ from week to week may be to do something or reflect on something relevant to a goal and then share this with the group in the following session if they wish. Each week, the groups focus on one theme taken from the conceptual framework of recovery (Leamy et al. 2011): connectedness; hope and optimism about the future; identity; meaning in life; and empowerment (CHIME). Groups explore the themes using methods like brainstorming, drawing, film, evoke cards, sharing experiences, etc., and relate what they share to their own goals and everyday lives.
The courses are planned ahead and the facilitators have a plan for each group session. At the same time, the participants are given the opportunity to shape the course. The participants start the course by agreeing ‘house rules’ and slowly become responsible for the processes of learning during the course. Taking part in co‐creational processes makes it possible to learn based on information and experiences from all those present in the group.
Data from focus groups (on the last course day) indicates that the course is useful to both professionals and service users. Participants learn more about themselves and become aware of areas for development in their own lives. This may be related to the themes: ‘The themes in the course are important, they are about life’ (Group 5). At the same time, they are perceived as challenging:
‘It has been good and bad – I’ve been exhausted after a session. But I believe the strain is part of moving on’ (Group 5).
Participants’ experiences
The facilitators strive to create a learning environment that is safe, supportive and non‐judgemental. They pay careful attention to how they can make everybody feel welcome and have tools that make it easier for all participants to become involved. On the last day of the course one participant said: ‘I feel safe, people are open, inclusive and understanding’ (Group 5). It is always a choice to speak in the group. However, experiences show that all participants contribute in the group even if the person may hesitate in the beginning. A woman (aged 40 plus) who was very active in the group said: ‘I haven’t dared to talk in a group before… I have always been shy from my seventh school year until now’ (Group 2).
The Evoke cards were useful: ‘Using pictures was brilliant… It’s easier to recognise oneself in the images’ (Group 3); ‘They make it easier to speak’ (Group 4). Each person’s contribution is appreciated and there are no right or wrong answers. One participant felt included: ‘I was told to feel free to say whatever I liked, nothing was too silly or weird’ (Group 3). Participants learn from each other: ‘I have been challenged by what others have shared and have learned a lot from listening’ (Group 5). The groups seem to represent a different way of being in a social setting: ‘I come as I am, I do not worry about details about how I’m dressed’ (Group 5); ‘This group is different’ (Group 1); ‘There is an acceptance of problems and challenges as a resource, a sense that everybody is vulnerable, and we all need each other. We meet and talk about things without the wrapping’ (Group 2).
The participants appreciated that the professionals participated at the same level as the service users. One participant (a service user) said: ‘I realised I know as much as the professionals’ (Group 5). Some of the participants experienced being of help to others and this contributed to a more positive view of oneself: ‘Think in a new way – being good enough – an experience of being good enough’ (Group 1).
Facilitators’ experiences
The health professionals who co‐facilitated courses were expected to participate in the group by drawing on their own lived life rather than re‐stating theoretical definitions and prescriptions about what would be good for other people (Eriksen and Storesund 2019). One facilitator explained: ‘The participants define the concepts, not the professionals’ (Group 2). This was perceived as positive: ‘What is shared is helpful for everyone, both facilitators and participants’ (Group 3). Thus, being a facilitator contributed to personal growth: ‘It led to extended understanding