Good Life with Dementia - Peer Support

What might make peer support effective?

My name is Orla Phipps and I am a PhD student and research trainee at The University of York. As part of my research trainee role, I am working on a research project exploring the “Good life with dementia” peer support approach. You can learn more about the “Good life with dementia” project here: https://sscr.nihr.ac.uk/research/dementia/good-life-with-dementia/

My name is Hannah Charman, and I am a research trainee, in the Older Adults Social Care Research Group at the University of York. I have been working alongside Orla to explore what makes peer support effective.

The ‘Good life with dementia’ course is a peer-led post-diagnostic course co-produced by people living with dementia and co-delivered by them. This course is unique as it is tailored exclusively for people living with dementia themselves, not for families/carers.

As part of a research project exploring the ‘Good life with dementia’ course, our team performed a literature search in order to understand the current research that has been done on peer support. Through reading this literature, we have identified two interesting elements of effective peer support, which we will discuss below.

So, what might make peer support effective?

Knowledge

An important element of peer support that came out in the literature is the unique knowledge that peer supporters bring to the table.

There are 3 areas of knowledge that were beneficial to the peer support groups in the studies we read:

1. Knowledge of commonly shared experiences with others in the group.

In some instances, people living with a condition felt that advice and support from a peer was more credible than other support systems due to their shared experiences (Krulic et al. 2022) .When peer supporters shared common cultural or ethnic backgrounds with participants, this was found to improve outcomes of peer support by improving communication, relevance of advice, trust and overall feelings of connection. (Patil et al. 2016; Chaffey and Bigby 2018)

2. Knowledge of the disease or condition that the people in the peer support group live with.

Knowledge about the disease or condition that the peer supporters and people receiving the support have in common, was found to improve medical outcomes for people receiving support. One example of this is for people with HIV, who received peer support interventions, showed a decrease in viral load and an increase in CD4 cell counts, meaning that they experienced positive physiological outcomes (Han et al. 2023). Findings of improvement in medical outcomes were also found for people living with diabetes receiving peer support, who experienced improved HbA levels (Patil et al. 2016)

3. Knowledge about navigating the service system.

Peer support has been found to provide support to overcome common barriers within the healthcare system. Peer supporters were reported to help by linking people receiving support to clinical care and community services, providing practical support and reminders. This also helped people to build more effective communication with their doctors (Krulic et al. 2022; Cabassa et al. 2017; Øgård-Repål et al. 2023; Barclay and Hilton 2019).

An older gentleman wearing a wooly hat facing toward the camera while sitting in front of a laptop, while another gentleman in the foreground is pointing at the screen and speaking

The roles and approaches of peer supporters

According to the literature, the roles, attitudes and approaches of the peer mentors are also important.

1. The roles of peers.

Peers can fulfil multiple roles, for example a support, role model, and advisor (Barclay et al. 2019). As a role model, peers could model success and healthy living, which empowers people. These behaviours could also be modelled by experienced participants.

The peer mentors were also described as being a living example of what a person could achieve, and a resource to help them achieve it (Divanoglou. 2017). For example, the peers can assist in sign-posting and act as a link to other services. These services can include clinical care, community resources and assistance in daily management. Peer mentors can demonstrate skills and provide practical and emotional mechanisms for improving internalised stigma and use of health services and medication (Øgård-Repål et al. 2023).They can also support the participants to use established behavioural strategies, such as action planning, goal-setting, problem-solving, motivational support and shared decision making (Cabassa et al. 2017).

2. Personal Approaches of Peers.

There are certain personal approaches of peers that were mentioned in the literature that help contribute to effective peer support, such as peers having a positive can-do attitude. Peer supporters having a positive mentality also helped the participants become more motivated to reach their goals (Divanoglou. 2017).

The shared lived experience between the peer and participant creates trust and credibility (Embuldeniya et al. 2013). Some of the peers were described as having a more flexible approach, which not only allowed the participants to interact more informally with the peers, but also allowed them to individualise their learning experience to best suit them (Divanoglou. 2017).

A group of 3 older women sitting around a table with their hands on a magazine, which they are discussing

Conclusion

To conclude, the most crucial aspect of peer support that makes it effective is the peers themselves. The lived experience of the peers facilitates a shared bond between the peers and those seeking peer support, creating a high level of trust and credibility. When peer support works, it allows those seeking support to become more sociable, confident, and in some cases, lead a healthier life. The findings from the literature show the importance of facilitating and including peers in post-diagnostic support, as it creates a support system that is more trusted by the users.

An older woman and an older man having a conversation while sat a table in a village hall

References

Barclay, Linda, and Gillean Mary Hilton. 2019. “A Scoping Review of Peer-Led Interventions Following Spinal Cord Injury.” Spinal Cord 57 (8): 626–635.

Cabassa, Leopoldo J., David Camacho, Carolina M. Vélez-Grau, and Ana Stefancic. 2017. “Peer-Based Health Interventions for People with Serious Mental Illness: A Systematic Literature Review.” Journal of Psychiatric Research 84 (January): 80–89.

Chaffey, Lisa, and Christine Bigby. 2018. “Health Education by Peers with Spinal Cord Injury: A Scoping Review.” Journal of Developmental and Physical Disabilities 30 (1): 141–154.

Divanoglou, A. and Georgiou, M., 2017. Perceived effectiveness and mechanisms of community peer-based programmes for spinal cord injuries—a systematic review of qualitative findings. Spinal Cord, 55(3), pp.225-234.

Embuldeniya, G., Veinot, P., Bell, E., Bell, M., Nyhof-Young, J., Sale, J.E. and Britten, N., 2013. The experience and impact of chronic disease peer support interventions: a qualitative synthesis. Patient education and counseling, 92(1), pp.3-12.

Han, Shuyu, Yizhu Zhang, Xianxia Yang, et al. 2023. “The Effectiveness and Sustainability of Peer Support Interventions for Persons Living with HIV: A Realist Synthesis.” BMJ Global Health 8 (2): e010966.

Krulic, Timothy, Graham Brown, and Adam Bourne. 2022. “A Scoping Review of Peer Navigation Programs for People Living with HIV: Form, Function and Effects.” AIDS and Behavior 26 (12): 4034–4054.

Øgård-Repål, Anita, Rigmor C. Berg, and Mariann Fossum. 2023. “Peer Support for People Living with HIV: A Scoping Review.” Health Promotion Practice 24 (1): 172–190.

Patil, Sonal J., Todd Ruppar, Richelle J. Koopman, et al. 2016. “Peer Support Interventions for Adults with Diabetes: A Meta-Analysis of Hemoglobin A1c Outcomes.” Annals of Family Medicine 14 (6): 540–551.