Peer support in chronic health conditions
BMJ 2024; 386 doi: https://doi.org/10.1136/bmj-2022-070443 (Published 01 July 2024) Cite this as: BMJ 2024;386:e070443
- Claire Reidy, health services researcher1 2,
- Emma Doble, patient and public partnership editor (Education and Strategy)2 3,
- Aimee Robson, deputy director improvement, primary and community care4,
- Partha Kar, type 1 diabetes and technology lead, GIRFT clinical lead, diabetes, consultant in diabetes and endocrinology, clinical adviser, international medical graduates, councillor 4 5 6 67
- 1Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK
- 2Patient author
- 3The BMJ
- 4NHS England
- 5Portsmouth Hospitals NHS Trust, Portsmouth
- 6General Medical Council, London
- 7Royal College of Physicians, London
- Correspondence to C Reidy claire.reidy{at}phc.ox.ac.uk
What you need to know
Peer support can be particularly helpful at the point of diagnosis or during periods of transition in health or life stages
Peer support can be accessed face to face, online, in clinical or non-clinical groups, or through activities
Clinicians can collaborate with peer support groups by signposting patients to peer support, offering to attend peer support sessions, and helping with meetings
Most people living with a long term condition spend only a small fraction of their time with healthcare professionals. Someone with diabetes, for example, will spend three hours a year with a healthcare professional on average, and the remaining 8757 hours caring for themselves.1 Considering this limited time, and that 40-80% of medical information provided in health consultations is forgotten immediately,2 additional access to means of support could allow people to address issues not dealt with in traditional clinical settings.3 Self-management alone can be tiring, isolating, overwhelming, and tough on mental health.
Peer support offers a valuable way for people with chronic health conditions to learn to live with and manage the complexities of their condition day to day, giving them the confidence, knowledge, and support to do this.45 This article offers an overview of peer support, its place in long term condition management, and tips for discussing it with patients.
What is peer support?
Peer support is the connection of two or more people with shared lived experiences. It can take the shape of spontaneous or arranged one-to-one interactions, buddy programmes, or a group setting (table 1). Meetings can occur face to face (eg, coaching and information sharing), virtually (blogs or online communities, following tags or specific members of the community, or by accessing group talks or podcasts), or in formal groups (self-management education, semi-structured support groups, group consultations/clinics).
Types of peer support
Peer support can be initiated through healthcare professionals or peers themselves, either informally or formally. Groups can be set up in a healthcare setting or community, through voluntary organisations such as charities, or through community networks.
What impact can it have?
The varied and often informal nature of peer support means that specific outcomes can be difficult to capture in complex, real world settings, which can lead to inconsistent or context specific findings in the current evidence.6789 Our experience shows that peer support can have a positive effect on the management of a chronic condition.
Peer support is most often valuable to people with long term conditions, or their carers. Groups and connections can give members the opportunity to share the same frustrations and relate to each other’s experiences, feelings, and concerns.1011 They can enable sharing of experiences from different stages of living with the condition (or caring for someone who has it), and those with newer diagnoses can share thoughts and concerns with people who have more experience of the condition.6 This can help normalise their experience, allow shared learning, and reduce feelings of isolation. Peer support communities can enable people to find support and information by increasing awareness, connectivity, and motivation,512 while those located online have the benefit of being available around the clock.
For people who have a chronic health condition, talking to others can provide access to clinical care and resources, mutual encouragement, accessibility, relatability, and ongoing informational, instrumental, and emotional support.5131415 Support from peers can unlock opportunities to enhance healthcare provision, eg, through the provision of practical tips and examples to manage day-to-day challenges, and improving knowledge of the medical condition.1622 Support from peers can also help reduce depression, improve quality of life, and reduce levels of distress and anxiety for those experiencing mental health difficulties.1718 Further, this collective support, which encompasses beneficial emotional, practical and illness related “work”619 may contribute to improved clinical outcomes for people living with a long term condition by ameliorating the effects of condition-related distress.20
Peer support can enable people to feel in control and supported, and can provide a perception of choice around which self-management practices to undertake.20 A systematic review of randomised controlled trials found that telephone delivered self-management support for people with diabetes and vascular diseases, delivered by lay and peer support workers, significantly improved blood glucose levels and self-management behaviours.2122 The benefits of peer support extend to family carers,11 and some studies have also shown that peer support can help clinicians meet the needs of underserved populations.2425
What are the challenges and how can we address them?
Misinformation and harms
Concerns about peer support networks are often centred around the potential for overly negative conversations, sharing of unhelpful or misleading information, and reinforcement of erroneous health beliefs.1426 Other concerns include the potential for lack of accountability, reliability, or credibility of information.272829 In our experience, however, while misinformation can sometimes occur in peer support, peers are often quick to call it out to ensure it is not accepted or spread. Moderators of groups are particularly active in doing this, and other group members commonly question any potential medical misinformation. Moderators are typically individuals who take responsibility for checking that the members of an online group are keeping within the rules of the group, such as ensuring that no medical advice will be given, and that product promotions will not be shared.
Use of social media to host peer support comes with concerns around misinformation and privacy. Having group moderators can encourage confidence about online support groups, for both clinicians and patients, and can help to mitigate the risk of harm from any misinformation. Many find using social media an accessible way to gain valuable support from peers and we have found many positive examples.
Collaborating with clinicians
Peer support groups have been described as a movement of expert “patient-hood,” which may be out of keeping with traditional medical roles.6 Healthcare workers may be uncertain of the relevance of peer support, or have fears about professional responsibility from promoting peer support networks within clinical roles. Lack of attention to the emotional and psychological needs of patients, and fear of “creating problems for problems’ sake” have also been reported as barriers to clinicians promoting these networks.262730
Many people who are part of these support groups see peer support as a complementary addition to the care they receive from health professionals. In our experience, having collaboration between peers and clinicians can help facilitate peer support groups. Clinicians can offer clarification and assurance for specific health concerns, and support through open discussions about topics that arise in the group. This can create opportunities for clinicians to learn more about the things that matter to patients and allows members of the group to feel they are supported and heard, while building trust between clinicians and those with lived experience. For example, we have seen examples of clinicians engaging with groups and responding to needs, hosting online sessions for groups about particular topics or concerns that have arisen in the group (eg, managing sickness or travelling), or offering support from the NHS relating to self-management education, mental health, or different treatment options.2731 Clinicians can also support patients by providing a meeting space, facilitating engagement between patients who may wish to run a peer support group, and exploring how much involvement patients may want from the clinic or service, as well as the clinician’s capacity to provide this support. In this context, clinicians and peer leaders should operate as equals, and be aware of any potential power imbalance.
How and when might peer support be suggested to patients?
Box 1 outlines when clinicians might consider discussing peer support with their patients. In particular, peer support may play a role when something new is introduced into a person’s life, when needs can be notably heightened.32 In these instances of “newness,” peers can benefit from problem solving, practical tips, and reassessing illness experience and perspectives.1326 For example, in a peer buddy programme in the US, people living with diabetes who had just had a child were paired together to provide specific information, activities, and emotional support.15
When to consider discussing peer support
New diagnosis
New therapeutic health technology
New medication or therapy
Illness complication or progression
Life events that require new or renewed knowledge, confidence, support, and resources (eg, pregnancy, attending university)
Patient new to area
Patient struggling with attending clinical appointments
Patient distrust in traditional healthcare or health service
Transitional groups (eg, adolescents)
The value that peer support may bring to an individual varies according to their current circumstance, the stage of their journey, and what is important to them. When suggesting peer support, it can help to explain that there are different types available, recognising that preferences for online, group, or one-to-one interaction, as well as accessibility barriers, may be important factors for patients. For example, online peer support can create a space for anonymity for adolescents who feel embarrassment or anxiety about questions or interactions with healthcare professionals.533 Tips for these consultations are given in box 2.
Consultation tips for discussing peer support
Use life events or times of importance (eg, a new diagnosis, starting university, pregnancy, etc) to introduce peer support as part of a person’s care plan
Explore the most accessible types of peer support (eg, online or in person)
Share examples of peer support groups and the role they can play
Ensure patients know that peer support groups are not to provide medical advice but more to focus on how to live well with their condition
A good place to start for interested patients is with relevant charities (box 3), which often run or keep directories of peer support groups. Many GP practices have a social prescribing link worker who should have good knowledge of local peer support. Searching social media for key terms such as the condition name and peer support can also provide a good route into peer support networks. It can be helpful to have a short list of peer support resources to give your patient. Peer support may not be for everyone, but if patients have information on the peer support available they can make an informed decision on whether they’d like to engage with peers.
Where to suggest patients may find peer support groups
Social media (through hashtags on X, eg, #GBDOC; or Facebook groups)
Charity networks of peer support groups (eg, Diabetes UK, Parkinson’s UK, Terrence Higgins Trust, Macmillan Cancer Support)
Local community centres
Condition specific community or secondary care centres (if connected to groups in the local area)
Social prescribing link workers in some GP surgeries
Education into practice
What peer support groups or networks are available to your patients?
When and how could you discuss peer support with patients?
What prevents you from sharing information on peer support? How could you overcome obstacles to sharing?
What education or support do you need to have these conversations with patients?
Sugarbuddies: an example of peer support
Sugarbuddies is an informal, peer led support group for people living with diabetes on the south coast of England. The group was launched in 2015 by a small collection of people living with diabetes and a parent of someone living with the condition. The group discussed the idea with a local clinician for support, and recruited other local clinicians and clinics to support setting up the network and letting people with diabetes know of its existence.
Format of the group—The group is based mainly online (through a closed Facebook group), but also arranges face-to-face meet ups which consist of walks, social meet ups, and events (such as a one day conference for people living with type 1 diabetes with a range of speakers covering technology, psychological wellbeing, and lived experiences of peers).
Group moderation—A small number of peers run group events and moderate the Facebook group. Moderators find that fellow peers usually correct any potential misinformation, or refer peers back to health professionals for specific advice.
Healthcare professional input and engagement—The group has good connections with the diabetes centres in the region, and those centres often let patients know about the group, either during structured education courses run by the clinics, or when the patient is starting a new diabetes technology such as an insulin pump. One clinic hosts a patient conference each year and Sugarbuddies presents at the conference to spread the word about the group. Healthcare professionals have also presented at these events.
While connections with healthcare professionals are strong, the online group does not have a healthcare professional presence (except for those also living with a form of diabetes). This is to encourage peers to feel comfortable talking honestly about their experiences of living with diabetes, or about the care that they are receiving.
How patients were involved in the creation of this article
Authors CR and ED both live with type 1 diabetes. They were both involved in the conception, development, and writing of this article.
How this article was created
Authors worked together to compile academic, clinical, policymaking, and personal experience of engagement in peer support for people with chronic conditions, and compiled relevant literature to explore the topic. Observations from personal, clinical, and policy making perspectives were outlined to consider the relevance, key questions, and pointers to address for practice.
Footnotes
Contributorship and the guarantor: CR and ED conceived the article and are the guarantors. All authors wrote and reviewed the article including the boxes. CR and ED were patient authors.
The authors would like to acknowledge Chris Bright, Shaun Carpenter, Muhammad Irfan, and Alex Silverstein for their involvement in the concept of this article.
Competing interests: none to declare.
Provenance and peer review: commissioned; externally peer reviewed.