A qualitative exploration of the psychosocial needs of people living with long‐term conditions and their perspectives on online peer support

Abstract Introduction Approximately 20% of people with a long‐term condition (LTC) experience depressive symptoms (subthreshold depression [SUBD]). People with SUBD experience depressive symptoms that do not meet the diagnostic criteria for major depressive disorder. However, there is currently no targeted psychological support for people with LTCs also experiencing SUBD. Online peer support is accessible, inexpensive and scalable, and might offer a way of bridging the gap in psychosocial care for LTC patients. This article explores the psychosocial needs of people living with LTCs and investigates their perspectives on online peer support interventions to inform their future design. Methods Through a co‐produced participatory approach, online focus groups were completed with people with lived experience of LTCs. Focus groups were audio recorded and transcribed verbatim. Reflexive thematic analysis (TA) was conducted adopting a critical‐realist approach and an inductive analysis methodology that sought to follow participants' priorities and concerns. Results Ten people with a range of LTCs participated across three online focus groups, lasting an average of 95 (±10.1) min. The mean age was 57 (±11.4) years and 60% of participants identified as female. The three key emerging themes were: (1) relationship between self and outside world; (2) past experiences of peer support; and (3) philosophy and vision of peer support. Adults living with LTCs shared their past experiences of peer support and explored their perspectives on how future online peer support platforms may support their psychosocial needs. Conclusion Despite the negative impact(s) of having a long‐term physical health condition on mental health, physical and mental healthcare are often treated as separate entities. The need for an integrated approach for people with LTCs was clear. Implementation of online peer support to bridge this gap was supported, but there was a clear consensus that these interventions need to be co‐produced and carefully designed to ensure they feel safe and not commercialised or prescriptive. Shared explorations of the potential benefits and concerns of these online spaces can shape the philosophy and vision of future platforms. Patient or Public Contribution This work is set within a wider project which is developing an online peer support platform for those living with LTCs. A participatory, co‐produced approach is integral to this work. The initial vision was steered by the experiences of our Patient and Public Involvement (PPI) groups, who emphasised the therapeutic value of peer‐to‐peer interaction. The focus groups confirmed the importance and potential benefit of this project. This paper represents the perspectives of PPI members who collaborate on research and public engagement at the mental–physical interface. A separate, independent Research Advisory Group (RAG), formed of members also living with LTCs, co‐produced study documents, topic guides, and informed key decision‐making processes. Finally, our co‐investigator with lived experience (E. A.F.) undertook the analysis and write‐up alongside colleagues, further strengthening the interpretation and resonance of our work. She shares first joint authorship, and as a core member of the research team, ensures that the conduct of the study is firmly grounded in the experience of people living with LTCs.

Conclusion: Despite the negative impact(s) of having a long-term physical health condition on mental health, physical and mental healthcare are often treated as separate entities. The need for an integrated approach for people with LTCs was clear. Implementation of online peer support to bridge this gap was supported, but there was a clear consensus that these interventions need to be co-produced and carefully designed to ensure they feel safe and not commercialised or prescriptive.
Shared explorations of the potential benefits and concerns of these online spaces can shape the philosophy and vision of future platforms.
Patient or Public Contribution: This work is set within a wider project which is developing an online peer support platform for those living with LTCs. A participatory, co-produced approach is integral to this work. The initial vision was steered by the experiences of our Patient and Public Involvement (PPI) groups, who emphasised the therapeutic value of peer-to-peer interaction. The focus groups confirmed the importance and potential benefit of this project. This paper represents the perspectives of PPI members who collaborate on research and public engagement at the mental-physical interface. A separate, independent Research Advisory Group (RAG), formed of members also living with LTCs, co-produced study documents, topic guides, and informed key decision-making processes. Finally, our co-investigator with lived experience (E. A.F.) undertook the analysis and write-up alongside colleagues, further strengthening the interpretation and resonance of our work. She shares first joint authorship, and as a core member of the research team, ensures that the conduct of the study is firmly grounded in the experience of people living with LTCs. and a further 20% experience subthreshold depression (SUBD). 2,3 SUBD is the experience of depressive symptoms that do not meet the diagnostic criteria for MDD. 4,5 In those with LTCs, SUBD is associated with having a significant impact on people's lives, including reduced quality of life, poorer reported physical health outcomes and increased risk of MDD. [5][6][7] SUBD is also a key risk factor for major depression, with 42% of patients who have SUBD comorbid with type 2 diabetes or heart disease developing major depression within 2 years. 7,8 Currently, there is no targeted psychological support for people with LTCs who are also experiencing SUBD. To prevent the escalation to MDD, the needs of those with LTCs experiencing SUBD need to be more carefully understood. Online health interventions reportedly increase self-management behaviours and improve wellbeing. 9,10 Studies in patients with LTCs have highlighted improved self-efficacy, adaptive coping and empowerment as benefits of participating in online support groups. 11 Peer support is defined as 'a range of approaches through which people with similar LTCs or experiences support each other to better understand the condition and aid recovery or self-management'. 12 Peer support may take place face-to-face, over the phone or online. 13 Online peer support platforms often embed a psychoeducation element. Psychoeducation interventions are defined as a 'professionally delivered treatment modality that integrates and synergizes psychotherapeutic and educational interventions' 14 and are considered more holistic than traditional medical model interventions. 14 However, there is currently little evidence exploring the effectiveness of online peer support combined with psychoeducation interventions to support people with LTCs experiencing SUBD.
Recent findings suggest that online peer communities may offer similar benefits to face-to-face support. 15 A qualitative systematic review considered how people with LTCs describe their experiences with online peer support. The main findings suggested that feelings of reciprocity, social support and access to experiential knowledge were experienced when accessing online peer support. 16 To our knowledge, there have been no randomised controlled trials (RCTs) of online peer support and psychoeducation interventions available to people with a diverse range of LTCs and SUBD (i.e., platforms that are not condition-specific). However, RCTs of face-toface peer support were shown to be effective on mental and physical health outcomes for those with LTCs, including people with diabetes, asthma and cardiovascular disease. 17,18 Other research suggests peer support interventions for those currently experiencing depressive symptoms or higher scores of psychological distress were more effective at reducing depressive symptoms compared to usual care. 19,20 Online peer support platforms for varying health needs are abundant. Yet, there are no online peer support and psychoeducational interventions tailored to support those experiencing SUBD in the context of LTCs. This article is set within the context of a wider project aiming to develop an online peer support and psychoeducation platform for those living with LTCs and SUBD. Intervention mapping has been used to integrate theory and evidence and guide the development of the project. 21 The study reported in this article is nested within the step 'Intervention Mapping: Needs Assessment'. 21 This article aims to explore the psychosocial needs of people living with LTCs and investigates their perspectives on online peer support interventions to inform their future design.

| Design
A focus group study of the psychosocial needs of people living with LTCs and their perspectives on online peer support.

| Patient and public involvement (PPI)
This article is set within the context of a wider project that is developing an online peer support platform for those living with LTCs and SUBD. An intervention mapping 21 and participatory, co-production approach has been embedded throughout. Three groups were established as part of the participatory design as follows: (1) focus group participants; (2)  A separate, independent RAG was formed of members also living with LTCs. They supported the study throughout by co-producing all study documents and by collaborating on key decision-making processes. They also co-produced the focus group topic guide with the research team.
The PDP was made up of an external design agency, researchers, clinicians, a co-applicant with lived experience (E. A.F.) and participants from the focus groups. The PDP will also be involved in the subsequently planned co-design stages of developing the peer support platform.

| Participants
Participants with LTCs were invited to take part in this study through flyer advertisements circulated through established PPI groups (the ICCPG, the Guy's and St Thomas' PPI group, the King's College Hospital PPI group) and through snowball sampling via these groups (e.g., word of mouth). Inclusion criteria were over 18 years of age, living with an LTC and the ability to give informed consent to participate. Exclusion criteria were insufficient English to be able to engage in focus group discussions. Participants were aware that they were being invited to discuss issues such as how their physical health condition affects their mental wellbeing and that the platform was being developed for use among people with SUBD and LTCs specifically. Three focus groups, with 10 people in total, were conducted, exploring the psychosocial needs of people living with LTCs and their perspectives on online peer support.
Focus groups were intended to shift the experience of power from the researcher to the group of participants, and to enable participants to feel supported by the group and not isolated in their experiences. 22 Due to restrictions imposed secondary to the 2019 novel coronavirus (COVID-19) pandemic, focus groups were carried out online via videoconferencing platforms and group sizes were reduced due to the online shift. Consultations with the RAG and researchers with experience of online delivery of focus groups informed the choice of platform to ensure optimal engagement. Clear, standardised, step-by-step instructions were provided to participants on how to download, access and use the platform. All participants had the necessary equipment (i.e., a device to take part, a webcam and microphone) and were offered a practice call with a member of the

| Analysis
Focus groups were audio recorded and transcribed verbatim.
Transcripts were reread alongside listening to the audio recording to anonymise and check accuracy.
Reflexive thematic analysis (TA) was conducted (E. A.F. and H. R.) adopting a critical-realist approach 23,24 and an inductive analysis methodology that sought to follow participants' priorities and concerns. 25 This analysis was co-produced using a participatory approach and therefore reflexive TA was selected by the authors as most appropriate due to its accessibility and acknowledgement that the authors play an active role in the analysis. 23 The focus groups were not carried out in a social vacuum as our assumptions and experiences as researchers impact the research we conduct. 23 Table 2.

| Reporting
Reporting was guided by the Standards for Reporting Qualitative Research (SRQR), which consists of a 21-item checklist. 27 The SRQR has been used to ensure standards for presenting qualitative analysis are met, while also allowing the flexibility and approach of this work to be maintained.

| Participant characteristics
Ten people with a range of LTCs participated across three online focus groups. Table 1 provides an overview of participant characteristics. The mean age was 57 (±11.4) years and 60% of those taking part in the focus groups identified as female. The majority (80%) of the participants used technology daily, and 30% had used internet support groups before.

| THEMES AND SUBTHEMES
Throughout the focus groups, a range of experiences were described in relation to the psychosocial needs of people living with LTCs and their perspectives on online peer support. We present three themes: (1) relationship between self and outside world; (2) past experiences of peer support; and (3) philosophy and vision of peer support. Table 2 provides an overview of the themes presented, corresponding subthemes, definitions and evidencing quotations.

| Mind-body separation
Participants felt that healthcare culture generally groups physical and mental care as separate entities, even in the context of LTCs. This separation was felt in previous experiences of treatments received in healthcare environments, 'when I was diagnosed, mental health issues didn't come into it. You had your condition and that was your condition. But now when we're asked to talk about how we feel … I find it really hard' (focus group 2, participant 2), and was reflected in the way some participants viewed their own health: as two distinct halves of mental and physical. Participants showed awareness of the complex nature of health in certain contexts (e.g., social situations, in the workplace). Despite this, they reported health discussions with clinicians as seeming reductive and more two-dimensional in nature, without acknowledgement from their doctor or nurse that their physical health status was likely to be affected by the condition of their mental health. The discussion of these interactions with clinicians was broad and varied according to participants. For some, the emotional side of living with an LTC was never discussed with their healthcare professional (HCP).
Participants reported that clinicians either did not discuss mental health issues and/or did not seem to consider themselves to be in an appropriate role to discuss them, though this was not the case for all.

| Predictable variability
This subtheme was strongly emphasised by participants and captures how participants expect to experience good and bad days with their Severe allergic asthma 1 Spondylolisthesis Tension between self-reliance and needing help Wanting to be independent but also the discomfort with having to ask for help when support from others is needed.
I've asked for somebody's help to help me go upstairs, um, in, in the tube station to go through the stairs (…) And the person said, oh, I haven't got any money. (…) Can be tough on, on, on your mental health eventually. Because then you feel even more self-conscious and anxious and, um … And, and, and paranoid in a lot of respect. (focus group 2, participant 3) Total strangers who are, like, loads older than me asking if they can help me which is extremely sweet but it makes me feel a bit pathetic. (focus group 2, participant 1) But the thing I, I've noticed the most in regard to mental health and that's sort of relationship within oneone's's self and the outside world, is, um, how would you say? The atmosphere, um, around one in the outer world, I find very unsettling. You know, the, the sort of vulnerabilities and the frailties and the suspicions and all these unsettling things, um, that seem to be within others, uh, affect me it' (focus group 3, participant 1). Two rationales for this were given.
First, the conversation itself was perceived as negative or not solution-focused, or second, it served as a reminder of the participants' own health when they did not want to focus on it.
Traditionally, peer support in people with LTCs has been centred around a particular condition, but we found evidence that this approach did not work for everyone. Several participants described encountering attitudes of competitive comparison where symptoms were pitted against each other: 'condition-specific groups […] didn't help because everybody was comparing their back pain to your back pain and that just wasn't helpful' (focus group 2, participant 4).
Finally, while acknowledging that a condition-specific approach could be successful for some, participants pointed out that 'no size fits all' (focus group 3, participant 1) and it was important not to assume a particular initiative could engage all those who wanted support.

| A safe and credible zone
According to participants, successful peer support platforms should be a secure and confidential space and their development should involve co-production with members of the patient group that they aim to cater for. The need for safety while accessing peer support was a key concern, although there were different definitions of what it meant to be safe in this context. We found that being in a safe space could mean, amongst other things, an expectation of privacy, Interestingly, there was also an emphasis on accessibility to peer support, which in practice could result in a less private space, by virtue of online peer support being easy to find and participate in.
The need for accessibility and privacy is concisely summed up here: 'within my culture, it's like a taboo when it comes to mental health. So it's about making the site, […] easy to access' (focus group 3, participant 2). The ease of participating in online peer support was also discussed: 'we can do it from our homes, we can listen to each other, but you haven't got to think about how to get somewhere' (focus group 2, participant 4).

| Transparent motivations
Participants believed that peer support platforms should not feel prescriptive or commercial in nature. One participant explained that it could depend on the motivations of the platform creators (whether commercial or academic) that result in an unwanted and prescriptive user experience: 'But things can get corrupted along the way by […] other agendas, shall we just say. And it's very conspicuous in the commercial world' (focus group 1, participant 1). It was felt that a commercial imperative was not inherently negative but considered likely to impact the integrity or values of a platform, which participants were acutely sensitive towards. | 2085 that service users found changes to their usual mental healthcare worrying, particularly when these changes were not effectively communicated. 30 Participants recognised that online peer support and psychoeducation did not require them to leave home and could therefore reduce the burden of self-management by helping people to feel more connected and supported by others in similar situations.

| Technology becomes an essential skill
This links closely with Griffiths et al., 18  social support and access to experiential knowledge. 16 Whilst research assessing the efficacy of peer support for depression found that peer support interventions were more effective at reducing depressive symptoms compared to usual care, 19 mitigating the potential adverse effects of online peer support is also key. Easton et al. 31  Additionally, future work should explore the potential role that HCPs may have in facilitating online peer support. Their role(s) may be multifaceted, from screening, referral and signposting, to moderating the platform and contributing to the psychoeducational material. Therefore, future work is needed to explore these potential roles and what people with LTCs would view as the most valuable role HCPs may play. Also, a limitation of this work that should be recognised is that we did not use a clinical measure to assess the mental health of participants, so the findings are not specific to those with SUBD. However, the recruitment flyer was framed under the title of 'Online peer support for preventing depression in people with LTCs: focus groups' and all people recruited to this study were aware that they were being invited to discuss issues such as how their physical health condition affects their mental wellbeing.

| CONCLUSION
Adults living with a range of different LTCs expressed the potential benefits that online peer support may have on supporting their psychosocial needs. They also expressed potential concerns around negative engagement with online peer support, highlighted by their discussions that emphasised the importance of these spaces feeling safe. Based on the shared experience of those who took part in this work and the value of co-production, careful, collaborative consideration is essential to develop the guiding principles of a future peer support platform, to explore potential moderation processes, and coproduce a moderation policy. That participants expressed that any online peer support platform needs to be a safe and credible zone highlights the need for platforms to be co-designed with the people that will ultimately use them to ensure this is a priority throughout.
These findings evidence how important identifying needs in the preintervention design stage is to promote a more purposeful intervention design that is user-led.