review (2016) include improving access (or ways into) the workings of healthcare organisations, providing patient support which is confidence building, offering different forms of involvement, resourcing outreach efforts, working on health literacy and working on communication practices more generally. Making high‐quality, condition‐specific information accessible to consumers in multiple forms and contexts (particularly by supporting the growth of strong information‐sharing peer networks) is increasingly understood to be vital in driving progress (Ramsey et al. 2017). Information is the essential seed from which knowledge and knowledge sharing can grow. A specific kind of information, patient feedback/perception data, is a further area which is gaining increasing attention in person‐centred care modelling. Better and more partnered approaches to this have been shown to yield benefits to both patients and providers, as the tools used become more relevant, and trust is built and acted upon across the patient–provider divide (Hall et al. 2018; Renedo et al. 2015).
Today’s drive towards more inclusive approaches to healthcare delivery is understood to be essential to progress in health organisations. People (particularly those with chronic and long‐term conditions) need and wish to take responsibility for their conditions and share in decision‐making about their treatment and management (Smith and Dransfield 2019). New and innovative models of care which prize partnership and peer networking are emerging. Models informed by PD principles are prominent among these (Heggdal 2015; Collier 2016). Existing studies of new models have yielded positive results for both patients and systems, but further studies which describe modelled approaches and the results arising from these are needed (Hall et al. 2018).
Examples of collaborative approaches
The two case studies presented in this chapter seek to illustrate such inclusive approaches. In both cases, people with long‐term conditions are provided with group‐based and informational support structures which offer them opportunities to ‘set the agenda’ around how the programmes run and, more generally, around the ongoing management of their condition. A key goal is that by being together with others in similar situations, participants can be supported to take responsibility for their health. The first example concerns an information group run by two regional Australian hospitals, supporting people living with a stoma, or people who are close to an ostomate. The second concerns a recovery course run by Norwegian municipal mental health services to provide opportunities for development and learning for persons with mental health or substance abuse problems. The common factors between the two examples are that the services provide frames and structures for inclusion (time, place, routine, professional commitment) and the founding values are person‐centred. In each case, there is a focus on acknowledging and including everybody who attends. At the same time, the agenda (e.g. topics and whose voices are given space) is decided together with the participants. There is awareness that knowledge based on lived experience is as valuable as the professional knowledge which the supporting professionals bring to the group‐based programmes.
Case 1 Illawarra Ostomy Information Group
Illawarra Ostomy Information Group (IOIG) is an example of service providers and end users working seamlessly together. The approach involves both flexibility and collaboration. Gumuchian et al. (2019) found that people with a chronic illness attend support groups for more than the giving/receiving of support from those with a similar experience or condition. People also attend to receive education and information and to enjoy opportunities to share their knowledge with other members. They also prefer the group to be facilitated by someone suitably trained (Gumuchian et al. 2019). A key goal of the IOIG is to keep the individual healthy whilst optimising use of the service provider’s time. Group members often self‐manage queries between each other. By sharing experiences, they can sometimes eliminate the need for intervention from the health professional. Such self‐management does not involve diagnosis or treatment, but it does involve learning, psycho‐emotional support and knowledge development. There is much for this group of people to learn from each other in relation to psychosocial adjustment, and the day‐to‐day complexities and challenges associated with living with a stoma.
The group has been running for 15 years and meets every second month for two hours in an education room in a private rehabilitation facility. On average, 25 people attend each session. Some people have been coming since the group’s inception, others come once or twice a year. New ostomates regularly join. The group is facilitated by two stoma nurses who serve the district, one from the public hospital and one from the private.
All new stoma patients are encouraged to attend and bring a partner or close friend. The value of the support person is not underestimated as they too need to receive support from others in a similar situation. People are told about the group either pre‐ or post‐operatively, depending on the circumstances. There have been times when a meeting has coincided just prior to a person’s surgery. In such situations, they have been able to attend and meet others with a stoma as part of their pre‐operative preparation and decision‐making.
Knowledge building/sharing within the group
The facilitators share news with the group relating to professional development activities they may have attended or participated in, such as conference and research activity. If there are any service provision‐related changes that may affect the group, these are also canvassed.
The facilitators organise guest speakers to present to the group on a topic basis. Speakers have included psychologists, exercise physiologists, legal aid practitioners and fellow ostomates who might share their story or particular experiences. The group is encouraged to contribute ideas for topics, during a yearly planning session.
Group members can also contribute by asking questions and by sharing experiences, for example about how they manage a particular problem or situation. This open‐forum style facilitates others to ask questions. Some members function as a resource for members with a new stoma during conversation and social chat which typically follows the forum. The social chat is also an opportunity for participants to talk to the facilitators, ask questions individually and make clinic appointments if needed. The facilitators actively connect those seeking information with others who have knowledge and experience which may help.
Sharing knowledge beyond the group
When knowledge that is transferable to other ostomates is shared within the group, members are encouraged to share this more widely by writing for a magazine that is mailed to all ostomates Australia‐wide. Examples of topics that group members have written about are ‘Managing overnight bag drainage: A self‐developed technique’ and ‘Travelling with a stoma’. The latter article provided advice for camping, cruising and flying. Information about navigating customs in relation to body scanners was found to be particularly useful. Another member designed and made stoma bag covers, including a shower cap‐style cover. This member donates the profits from the sales to the local ostomy association.
During every second year the Stomal Therapy Nurses (STNs) facilitate a community study day, which more than 80 community members have attended. Consumers are involved in the planning of the study day and contribute with presentations, manning the registration desk or serving refreshments.
Contributing to professional education
Members have participated in nurse education sessions conducted among non‐specialist nurses who work in Illawarra inpatient facilities. This involves attending and sitting with small groups of nurses and answering questions. The idea is to help nurses gain a better understanding of what it is like to live with a stoma and to know more about how to help the patient in hospital who has a stoma. Facilitating nurses in having conversations with people who have a stoma has significantly improved the nurse education programme. Feedback from staff about this aspect of the education programme suggests that it promotes empathy and increased confidence in looking after someone with a stoma. For nurses who are active in the busy climate we work in, it