Peer-support needs and experiences of young adults with chronic conditions: A mixed methods study.

Sydney Reed: Writing – original draft, Validation, Resources, Conceptualization. Sneha Dave: Writing – review & editing, Validation, Resources, Funding acquisition, Conceptualization. Peyton Miles: Writing – original draft, Validation. Brynn Telenko: Writing – review & editing, Formal analysis. Katherine Melton: Writing – original draft, Project administration, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Kathleen Walsh: Writing – review & editing, Supervision, Formal analysis, Conceptualization. Shannon O'Donnell: Writing – review & editing, Conceptualization. Caroline Walsh: Writing – review & editing, Conceptualization. Rosa Kelekian: Writing – original draft, Validation, Resources, Conceptualization.

Peer-support needs and experiences of young adults with chronic conditions: A mixed methods study The authors of this study confirm that this manuscript is original work that accurately represents the data that was collected. We confirm that this is an entirely original work that is not under review elsewhere, and that artificial intelligence was not used to write this manuscript. All listed authors have made a significant contribution to this work (please refer to author contribution statements for additional information). All authors approve this manuscript and take collective responsibility for this work. All study procedures were conducted ethically, and this study was approved by the Institutional Review Board at Boston Children's Hospital.

This study was funded by the Agency for Healthcare Research and Quality (AHRQ) T32HS000063 which Dr. Walsh is a principal investigator and Dr. Melton is a trainee. Generation Patient provided funding for participant incentives.

We recruited young adults (18–35 years) with chronic conditions to participate in an online survey. Survey items included demographics, general peer-support experiences, the UCLA 3-item loneliness scale, satisfaction with the peer-support program, and free text responses. To address Aim 1, we used qualitative and quantitative data to describe the sample and their psychosocial and peer-support needs. To address Aim 2, we measured satisfaction with a virtual peer-support program, including analysis of quantitative data and free text responses. This study was approved by the Boston Children’s Hospital institutional review board (IRB: A00046516). We recruited participants, ages 18–35 years, through an email listserv maintained by the nonprofit, community-based organization, Generation Patient. This organization serves young adults with any chronic or rare medical condition, including arthritis, lupus, inflammatory bowel disease, and Ehlers-Danlos syndrome. The listserv is promoted on social media and the organization’s website. It is free and open to anyone who wishes to be updated on Generation Patient’s activities and resources which include free advocacy and peer support programs for young adults with chronic conditions. It includes ∼1200 subscribers total, including young adults with chronic conditions, their care partners, healthcare professionals, and community advocates who work with this population. Of these, ∼ 390 subscribers are young adult patients who have expressed interest in learning more about peer support programming. Listserv subscribers are predominantly from the United States, however, there is a small community of international subscribers as well. We elected to include participants from outside of the United States to include the perspectives of young adults from other countries who may face additional barriers to accessing peer support (i.e., stigma and technology access). To be eligible for the study, participants needed to be 18–35 years old and self-report a diagnosis of one or more chronic health conditions or the presence of a chronic, undiagnosed condition. Eligibility was determined by participant’s response to the multiple-choice question: “What chronic condition(s) have you been diagnosed with?” Participants could select from 17 conditions which commonly affect young adults, utilize a free text box to indicate conditions that were not listed, or note the presence of a chronic but currently undiagnosed condition. Participants screened out if they responded: “I do not have a chronic condition.” An information sheet was provided to participants prior to accessing the survey. To consent to participate, participants attested that they had read the information sheet and were willing to participate. All participants who completed the survey received a $10 electronic gift card. The research team co-developed and pilot-tested an original 64-item online survey with feedback from multiple young adults with chronic conditions. The online survey platform REDCap (Research Electronic Data Capture) 21 was used to administer the survey. CAPTCHA was enabled to reduce the risk of automated survey responses. The survey consisted of an eligibility screener followed by multiple-choice and free-text questions about demographics (i.e., race, ethnicity, age, diagnosis), general peer-support experiences (15 items, i.e., “Please share the social media websites or apps you receive peer support from, if applicable.”) and program use and satisfaction for those exposed to the virtual peer-support program (9 items, i.e., “In general, how satisfied are you with the Generation Patient peer support meetings you have attended?”). To evoke qualitative context for the above data, free-text questions such as “What do you think is the most important thing that people do not understand about being a young adult living with a chronic condition?” and “Is there anything you’d like to share about your feelings about or experiences with peer support?” were also included. The UCLA three-item loneliness scale – a widely used, validated, and reliable short form measure of loneliness 22 (Cronbach’s alpha 0.86) – was administered to all participants. Scores range from three to nine, with greater scores indicating greater loneliness. Scores of 6 and above are considered to be clinically indicative of loneliness. 22 This measure is frequently used in adolescent and young adult populations, including those with chronic conditions. 23 For this study, we calculated total scores on the UCLA 3-item loneliness scale, as well as binary scores based on the clinical cut point; for analysis purposes, scores < 6 were considered “not lonely” and scores of ≥ 6 were considered “lonely.” The peer-support program evaluated in this study is a virtual (Zoom-based) peer-support group run by Generation Patient. The meetings are led by trained peer facilitators who guide participants through semi-structured activities (i.e., discussion prompts or a creative activity such as poetry writing), designed to foster group connection and community support. Peer facilitators (young adults with chronic conditions, many of whom also have professional training in fields such as counseling or healthcare) receive group facilitation training and are required to attend the peer groups as participants prior to leading. Facilitators receive regular supervision and support from the Program Manager (who holds a Master's in Social Work), including group co-facilitation, planning support, and 1:1 post-group debriefing. As a community-led program, efforts have been made to balance fidelity of this intervention while also remaining flexible and responsive to the changing needs of participants. Generation Patient began offering free virtual peer-support meetings in March 2020 and has since held over 600 peer-support meetings. Generation Patient currently offers between six and eight peer-support meetings per month via Zoom. While there is no specific age requirement to attend, these meetings are geared towards young adults (ages 18–35). Three different types of peer-support groups are available, and participants can attend all groups that they are eligible for. Generation Patient offers two types of cross-disease peer-support programming: a “general support” meeting (open to any young adult with a chronic or rare health condition or who has a chronic but undiagnosed condition), and a “higher education” group for young adult patients in college, graduate school, or on medical leave from higher education. Generation Patient also offers one disease-specific group for young adults with inflammatory bowel diseases. A wide variety of health needs are represented in Generation Patient’s peer-support programs. Participants needed to self-report program attendance of “a few times a year” or more, to be considered exposed to the program and included in Aim 2; those who attended less than once a year were not considered sufficiently exposed to the program to be included in the program evaluation. Guided by qualitative descriptive methodology, 24 we extracted the free-text responses and used deductive and inductive coding guided by conventional content analysis 25 to identify individual meaning units from the text and group them into categories. Themes that tied together participant experiences were then developed and used to enhance the quantitative data. 26 An iterative codebook 27 guided the qualitative analysis. Two coders (KM and BT) independently coded the qualitative data and met weekly to reach a consensus and resolve discrepancies through discussion. KM is a PhD-prepared pediatric nurse with extensive qualitative research experience, and BT is a research assistant with training in qualitative methods. Both KM and BT practiced reflexivity throughout data analysis. Excel spreadsheets (Microsoft Corporation) were used to organize the qualitative data during analysis and the study team kept an audit trail of all coding decisions. In the process of member checking, the qualitative themes were presented to a group of young adults with chronic conditions to confirm that the researchers’ interpretations of the data resonated with the experience of chronically ill young adults. The research team employed several strategies to enhance qualitative rigor. 28 These included thick description (detailed description of the study setting and participants) and inclusion of rich exemplar quotes to enhance transferability, triangulation (use of multiple researcher perspectives and collection of both survey and qualitative data) to enhance the credibility of the findings, and the practice of researcher reflexivity (awareness and setting aside of researcher preconceptions) to enhance confirmability or the reduction of researcher bias. 28 We calculated descriptive statistics (mean, median) for survey questions relating to demographics, the UCLA loneliness scale, general peer support experiences, and satisfaction with and use of the peer-support program. Counts, percentages, and univariate statistics were used to describe the sample. We also compared demographic characteristics of 18–25-year-olds and 26–35-year-olds using Chi Square tests to test for significant differences between these two groups, as experiences may vary widely within the period of young adulthood. All analyses were conducted using SAS version 9.4 software (SAS Institute, Cary, NC, USA). Responses with “straight lining” or significant missing data were evaluated on a case-by-case basis and excluded if determined to be invalid. Responses with > 20 % missing data for a given measure were excluded from analysis. Aligning with convergent parallel mixed methods designs, quantitative and qualitative data analysis occurred simultaneously, and qualitative data was used to add additional depth to the survey results. The quantitative results and qualitative codes were systematically compared to look for concordance or discordance between the two data sources. To integrate the data, the research team analyzed the qualitative and quantitative data in parallel with a focus on how both types of data were either complimentary or contradictory. Individual qualitative themes were matched with corresponding results from the survey (i.e., data on barriers to peer support and the theme Peer support is not one size fits all ) and examined to see if the qualitative data provided additional richness to the quantitative results or presented a contradictory story. In the event of contradictory qualitative and quantitative data, the research team generated hypotheses through group discussion to understand and explain the discrepancy in the context of the study as a whole. In the results section, the qualitative themes are matched with corresponding quantitative results and presented together to provide a more comprehensive description of peer support needs and experiences among young adults with chronic conditions.

One hundred thirty-six young adults participated in this study (approximately 35 % response rate based on the estimated number of young adults with chronic conditions subscribed to the listserv). The sample was predominantly cisgender female (65 %, n = 88) and White (71 %, n = 97). ( Table 1 ) . In the sample, 52 % (n = 75) were ages 18–25 and 48 % (n = 69) were ages 26–35. No significant differences in demographics were noted, aside from a comparatively greater proportion of 26–35-year-olds reporting achievement of advanced degrees, being married, or living with a partner. Most participants resided in the United States (87 %, n = 118); however, young adults from Asia (n = 2), Africa (n = 4), Europe (n = 2) and elsewhere in North America (n = 9) also participated. Table 1 Participant characteristics. Table 1 Demographics (n = 127) N (%) Female (cisgender) 88 (69 %) Race Asian 10 (8 %) Black 6 (5 %) More than one race 7 (6 %) White 97 (76 %) Another race 6 (5 %) Ethnicity Hispanic/ Latino/a 13 (10 %) Region Midwest 17 (13 %) Northeast 44 (34 %) South 25 (19 %) West 26 (20 %) International 18 (14 %) Age (years) Mean (SD) 26 (4.3) Diagnosis 1 (n = 136) N (%) Arthritis (any) 7 (5 %) Asthma 24 (18 %) Celiac disease 6 (4 %) Diabetes (any type) 8 (6 %) Ehlers- Danlos syndrome (EDS) 27 (20 %) Endometriosis 8 (6 %) Fibromyalgia 9 (6 %) Gastroparesis 12 (9 %) Genetic condition (any) 16 (12 %) Inflammatory bowel disease 44 (32 %) Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) 5 (4 %) Postural Orthostatic Tachycardia Syndrome (POTS) or dysautonomia 28 (21 %) Another chronic condition 67 (49 %) Undiagnosed chronic symptoms 16 (12 %) Disease Severity (n = 136) N (%) Have you ever been hospitalized due to your chronic condition? 105 (77 %) Have you visited the emergency room in the past 12 months due to your chronic condition? 59 (43 %) Do symptoms/ physical limitations from your chronic condition limit you from doing things you want to do? 122 (90 %) Social Factors Living arrangement a (n = 130) N (%) Alone 28 (19 %) Friends 7 (5 %) Roommates 12 (8 %) Parents 51 (35 %) Family other than parents 13 (9 %) Spouse or partner 33 (23 %) Relationship status (n = 127) Single 68 (54 %) In a relationship but not living together 33 (26 %) In a relationship and living together 26 (20 %) a Categories are not mutually exclusive Participant characteristics. Categories are not mutually exclusive Three overarching themes connecting Aims 1 and 2 were identified from the qualitative data : Peer support is not one size fits all (peer-support must be tailored to an individual’s needs to be most effective) , grieving your life as you’re living it (chronic illness in young adulthood can feel like the loss of the chance at a “normal life”) , and the intersectional experience of being young and chronically ill (the unique lived experience of being both young and chronically ill is often poorly understood by those without that experience). The themes and exemplar quotes are presented in Table 2 . Additional exemplar quotes are presented with the quantitative data. Table 2 Qualitative themes and exemplar quotes. Table 2 Theme Summary Exemplar quotes Peer support isn’t one size fits all Peer support is experienced differently by different people and needs to be tailored to an individual’s needs to be most effective. “Sometimes I feel out of my element in them because I do have problems I'd like to address in a support group but it never seems as dire of needs as others.” (#148, intestinal pseudo obstruction, genetic condition) “I think the shared interests piece is key, too - just because you share a condition doesn't necessary mean you will bond/connect. It really helps to have things in common, just like with any other friendship!” (#121, narcolepsy) “Talking with other young adults has really allowed me to have people in my life who understand when I need someone to talk or vent to. It has also made me more comfortable and confident in talking about my chronic illness and advocating for myself.” (#101, inflammatory bowel disease) Grieving your life as you’re living it Chronic illness in young adulthood can feel like the loss of the chance at a “normal life” resulting in feelings of grief, isolation, and physical and psychological burden. “The isolation. My in-person friends don't show up for me.” (#3, asthma, arthritis) “You gain a visceral understanding of the fragility of all things and must come face to face with your own mortality at a very young age.” (#7, undiagnosed symptoms) “People tend to think of young adults as "healthy" and in the "prime" of their lives. When you are not healthy and it doesn't feel like you're in your prime, it feels like you're missing out on what society says should be the best years of your life.” (#51, inflammatory bowel disease) The intersectional experience of being young and chronically ill The intersectional experience of being young and chronically ill is often poorly understood by those without that lived experience “How lonely, exhausting, and misunderstood it is. I'm not just lazy or a homebody, I can't do the same things everyone else can. I'm also not being difficult if I say I need something or can't do something-I just genuinely can't.” (#35, gastroparesis, other comorbidities) Since it's an invisible condition, people don't take it seriously.” (#109, lupus) “I feel like I'm years behind my abled bodied peers. I'd love to buy a house, get married, and have children but I'm constantly worried about housing, food security, and doctors appointments.” (#65, Ehlers-Danlos syndrome) Qualitative themes and exemplar quotes. Among all respondents, the mean score on the UCLA loneliness index was 6.6 ( ± 1.9). When the UCLA loneliness scores were converted to a binary variable using the clinical cut point of ≥ 6, 72 % (n = 96) of participants had a score that indicated clinically significant loneliness. No difference in proportion of participants with a UCLA loneliness index score of ≥ 6 was noted between participants who were 18–25 and those who were 26–35 (p = 0.497). Experiences of loneliness and isolation were also found in the qualitative theme of grieving your life as you’re living it , which describes the physical and psychosocial toll of living with chronic illness in young adulthood. One participant shared their feelings of isolation as a young adult with a chronic condition: “It can get incredibly lonely because you aren't really seen – loved ones try but they just don't get it” (#135, fibromyalgia). Another participant shared about a source of this loneliness: “When you are not healthy and it doesn’t feel like you’re in your prime, it feels like you’re missing out on what society says should be the best years of your life” (#51, inflammatory bowel disease). This feeling of ‘missing out’ was seen quantitatively as well; 90 % of respondents (n = 122) noted that symptoms or physical limitations from their chronic condition limited them from doing things they wanted to do. Quantitative results addressing Aim 1 are presented in Table 3 . The young adults in this study reported accessing peer support from a variety of sources outside of the virtual peer-support program. Social media was the most used source of support (n = 87, 60 %), followed by virtual peer-support programs (n = 59, 41 %) and in-person support groups or camps (n = 42, 29 %). Accessing peer support was often challenging, and participants reported an unmet need for peer support: “I think peer support should be promoted even more than it is right now. It can be difficult to grow the community, so the more access there is, the better” (#127 inflammatory bowel disease). Participants noted that this lack of peer support opportunities was impactful, as they felt it difficult to relate to individuals their age who were not chronically ill. Of our participants, 97 % (n = 128) felt it was important to talk to others with their condition and 91 % (n = 119) wanted to connect with chronically ill peers regardless of their condition. The theme " The intersectional experience of being young and chronically ill " demonstrates that peer support may help provide a sense of validation and understanding that is not met by healthy peers. One young adult shared: “I think that most people do not understand that I don't want to be sick and it is not my fault. I am already doing the best I can and I do not need unsolicited advice, I just want emotional support because it is very hard to be sick, especially at my age” (#118, inflammatory bowel disease). Table 3 Peer support needs and experiences. Table 3 N % Feels that it is somewhat or very important to talk to other young adults with their chronic conditions 128 97 % Feels that it is somewhat or very important to talk to/know other young adults with any chronic condition (even if that condition is different from own) 119 91 % Wishes that peer support was offered by their hospital/clinic 99 88 % Ever used social media for peer support 87 60 % Feels like there are people in their life that really understand what it’s like to be a young adult with a chronic condition 78 60 % Ever participated in a virtual peer support program 59 41 % Ever participated in an in-person peer support program 42 29 % Hospital/clinic offers peer support 15 11 % Peer support needs and experiences. Participants desired more peer-support opportunities, particularly those tailored to the unique needs of young adult patients. One participant shared: “The [foundation] offers group support for young people but then let in those who are older and have been diagnosed forever, which scared me away and I'm sure others” (#241, multiple sclerosis and other comorbidities). Hospital-based peer-support programs were a particularly unmet need: while 88 % (n = 99) of participants wished their hospital or clinic provided peer-support groups for people living with their chronic condition, only 11 % (n = 15) reported such a program was actually offered. One participant shared their experience trying to access hospital-based peer support: “Here's what sucks. Groups that offer the support (like one of our previous hospitals) [is] that they cancel. Also groups you reach out to and they never answer. It's cruel” (#144, genetic condition). The qualitative theme peer support is not one size fits all emphasizes how peer-support needs and experiences can vary person to person and over time. While some participants shared a desire to talk to others with the same condition, others emphasized the importance of forming connections based on shared experiences and interests, rather than shared diagnoses or treatments. One participant shared: “Peer support can be a really amazing thing. But it can be hard to make sure everyone feels included since sometimes people focus too much on the specific illness or condition or symptoms rather than shared experiences” (#89, fibromyalgia and other comorbidities). Overall, most participants felt that peer support is important but needs to be tailored to individual needs, ideally with multiple options available. Participants reported benefitting from peer support in different ways: gaining knowledge or resources, making social connections with others, and finding a space to be heard and understood. One participant shared how peer support gave them the knowledge to advocate for their health: “I've had a combination of good and bad experiences but overall I'm truly grateful I've gained community throughout my medical journey, it helped me learn things I never would have been able to learn without having a community that was eager and able to help me when I've needed them” (#160, neurofibromatosis). The mutual understanding found in peer-support spaces was also beneficial to participants: “Peer support is a game changer! It's important for me to have someone with shared experiences for me to talk through challenges and wins with. They just 'get it' on another level” (#162, Type 1 diabetes). This sentiment of mutual understanding was echoed by a different participant: “I think peer support is so important to feel validated as a patient and person. Even if you do not have the same conditions it is someone who can relate to the struggles you have and also understand where you are mentally because you have a chronic illness” (#252, inflammatory bowel disease and other comorbidities). While the general experience of peer support was positive, a few participants shared experiences of negative group dynamics and “trauma ranking” in these spaces: “I feel that sometimes peer support can get a little toxic (like when it becomes a competition of who's sicker), so I avoid some spaces because of it. In general, though, it's a positive thing” (#75, Ehlers-Danlos Syndrome). Skilled group moderators were valued as a way to help mitigate this. The importance of creating an inclusive and welcoming peer-support environment was also highlighted, particularly for individuals with intersecting identities (e.g., chronically ill and non-binary gender identity). Among all survey respondents, 34 regularly participated in the virtual peer-support program. Quantitative results which address Aim 2 are presented in Table 4 . No difference in proportion of young adults who attended the virtual peer-support program was noted when comparing 18–25-year-olds and 26–35-year-olds (p = 0.497). Of those that participated in the program, 56 % (n = 19) attended a few times a year, 29 % (n = 10) attended about once a month, and 15 % (n = 5) attended more than once a month. Table 4 Peer-support program acceptability and use. Table 4 Virtual Peer Support Program Use (n = 34) N % Satisfaction with program: Completely satisfied 21 62 % Somewhat satisfied 11 32 % Neither satisfied nor dissatisfied 2 6 % Found out about the program through: Social media 18 53 % Internet search 5 14 % Friend or family member 4 12 % Through attending another Generation Patient event 4 12 % Healthcare provider 3 9 % Frequency of program attendance: A few times per year 19 56 % About once a month 10 29 % More than once a month 5 15 % Reasons for not attending for those aware of the program (n = 53) a N % Too busy 21 40 % Timing of the meetings is inconvenient 18 34 % Already receives peer support from another source 16 30 % Concerned about not feeling welcome 6 11 % Another reason 6 11 % No need for peer support 5 9 % a Categories are not mutually exclusive Peer-support program acceptability and use. Categories are not mutually exclusive Most program participants (53 %, n = 18) found out about this virtual program through social media. Other ways participants found out about the program included through a friend or family member (12 %, n = 4), through participating in another program sponsored by Generation Patient (12 %, n = 4), or through an internet search (14 %, n = 5). Most participants reported that they were completely or somewhat satisfied (94 %, n = 32) and 6 % (n = 2) reported being neither satisfied nor dissatisfied with the virtual peer support program. Qualitative data from the 34 program participants indicated that those who accessed the meetings generally reported a positive experience. One participant shared: Peer support has been something that keeps me going. I need that monthly or bi-weekly check in to be ok with dealing with the hard stuff. Even if we are not discussing our medical stuff just being around others that I don't need to explain or apologize if I’m unwell or can't answer a question (#12, inflammatory bowel disease, other comorbidities). Participants shared that peer-support meetings provided them with a supportive community and a place where their experiences could be understood: I never felt like there was a place to talk so openly about chronic illness and different topics that weighed so heavily on my mind in my group around me. These support groups make it easier to foster connections with others which have made a really positive impact in my life (#47, inflammatory bowel disease, other comorbidities). Among the 53 (58 %) respondents who were interested in the peer-support program but had not yet attended, the most common barriers to attendance were being too busy to attend (n = 21) and the timing of the meetings (n = 18). The qualitative data additionally identified that the meeting times (generally 8 pm EST) were a particular barrier for international participants and those living on the West Coast of the United States. Other suggestions for improving the program included encouraging social connections outside of the peer-support meetings and offering a wider variety of meeting topics and activities.

Thriving as a young adult with a chronic health condition requires tremendous resilience, encompassing not only the ability to adapt and cope with physical symptoms but also managing the emotional and psychological challenges that often accompany such conditions. Chronic illness can impose significant limitations, hindering the ability of young adult patients to form and maintain meaningful interpersonal connections, leading to feelings of isolation and loneliness. This study of young adult patients with a range of chronic conditions highlights the crucial role that virtual peer-support programs may play in enhancing quality of life and wellbeing among young adults with various chronic conditions. In both the qualitative and quantitative data, participants reported numerous benefits of peer support, such as increased emotional support and a strengthened sense of community. Despite these positive outcomes, the study also identified significant gaps in access to tailored peer-support interventions that meet the diverse needs of young adult patients. This underscores the necessity for further research and development in this area to maximize the effect of peer support on health outcomes. Future research and targeted funding are essential to develop more effective, accessible, and tailored peer-support interventions. Moreover, involving patients in the creation and ongoing development of research and peer-support programs is essential to ensuring that peer-support interventions are truly patient-centered and capable of addressing the varied needs of individual patients.

This work demonstrates the psychological impacts of living with chronic illness in young adulthood, particularly significant feelings of loneliness and being misunderstood by healthy peers. Our participants identified that peer support can help to alleviate some of these feelings, however, this need can remain unmet if these programs are not tailored specifically towards young adults. Participants who attended the virtual peer-support meetings we evaluated expressed high levels of satisfaction. Overall, this study demonstrates the psychosocial impact of living with chronic illness as a young adult and the need for additional support to foster social and emotional wellbeing in this population. This work also identifies areas for improvement in the delivery of peer support which should be addressed in future research, in particular, difficulty accessing peer support and a lack of programs tailored to the unique needs of young adults. While prior research primarily focuses on disease-specific peer support, 29 , 30 , 31 , 32 particularly in oncology, 33 , 34 , 35 , 36 our study utilized a cross-disease model, exploring the potential benefits of disease-agnostic peer-support programs for young adults with chronic illnesses. Both disease-specific and disease-agnostic peer support offer unique and often complementary benefits. Disease-specific peer support offers the opportunity for participants to discuss specifics of diagnosis and treatments with their peers, allowing for the sharing of illness management strategies. Complementing disease-specific support, disease-agnostic support can provide a sense of validation and the opportunity to connect with others who understand the complexities of living with a chronic illness, allowing for connections to be built on characteristics beyond a shared diagnosis. Our participants highlighted the importance of both types of support, emphasizing that support which was tailored to the needs of young adults was of primary importance to them. On a systemic level, increasing access to appropriate and accessible peer support is a common challenge. 37 Work in the hematology-oncology space has already well-established peer-support needs among adolescents and young adult (AYA) patients. Allen and colleagues 38 surveyed AYAs aged 13–34 years with cancer, sickle cell disease, primary immunodeficiency, or neurofibromatosis, and their caregivers at a large research hospital, identifying that AYA patients desired tailored social activities with peers. 38 Similarly, our participants discussed the need for options tailored to the psychosocial needs of young adults, such as navigating relationships, school, work, or reproductive health. As ‘young adulthood’ can span a relatively wide age range, even further narrowing or specifying support – either by age, developmental stage, or topic – may be beneficial. An online survey of young adults with epilepsy 39 also identified a need for easy-to-access programs that were tailored to young adults. This was echoed by our participants, who expressed difficulties accessing peer-support groups due to a lack of local programs, frequent cancellations, or other barriers to attending. Interventions delivered in a virtual format 18 may help to alleviate some of these barriers to access. While disease-specific programming remains a valuable resource, our findings suggest that some future peer-support programming may benefit from a focus on overall experience of chronic illness, rather than specific symptoms or conditions. This shift, in combination with other patient-identified considerations, may help increase access to supportive communities. This study is inherently limited by an observational study design, and future work using randomized controlled trials and comparative effectiveness research is needed. Due to the observational design of the study and potential recall bias, our calculation of dose of exposure to the program is limited by self-report data and the overall dose and sample size of those exposed is low. While an important outcome, the UCLA loneliness scale may be limited in its brevity and future work should include other outcomes including self-efficacy, social support, and quality of life. While important for increasing accessibility of the survey, use of self-report of presence of a chronic condition is an inherent limitation. Generalizability is limited due to selection bias and the demographic composition of this organization’s participants (predominately White and cisgender female). The results of this study have limited generalizability to other groups and future study in a more diverse sample is needed. Health disparities and other sociodemographic factors may hinder certain groups from accessing healthcare and peer support during young adulthood. The limited demographic diversity of its participants of this current study neglects under-represented perspectives and expanding work with under-represented voices is an important area for future research. Similarly, findings may not be generalizable worldwide given the small proportion of participants from outside the United States. Despite these limitations, this study provides valuable information about the peer-support needs and experiences of young adults across chronic conditions.

Emerging adulthood is a life phase characterized by increased independence as young adults create their own social identities and begin to build lives separate from their parents. 1 Starting in adolescence, young people begin to shift away from relying on their parents as their primary source of social support, to receiving social support from their friends and peer groups. 2 For the approximately 25 % of young adults in the United States who live with a chronic condition, establishing a peer-support network and receiving adequate social support can be particularly challenging. 3 Living with a chronic condition can be an isolating experience, and young people with chronic conditions have been shown to lag behind their healthy peers in terms of social participation. 4 Young adults with chronic conditions may feel less connected to their healthy peers, fearing judgement or concern that their experiences will not be understood. 5 , 6 Therefore, this population may benefit from connections with other young adults with similar chronic conditions, or ‘peer-to-peer’ support. 7 For the purpose of this study, we define ‘peers’ as individuals of a similar age or developmental stage who share a common experience (i.e., diagnosis of a chronic condition). Peer-support programs encompass a wide range of interventions that leverage shared experience and may include activities such as in-person support groups, specialized summer camps, online message boards, telephone support, or peer mentoring. 2 , 8 Peer-support interventions are well studied in adult healthcare spaces as a means to support psychosocial health and health-related quality of life for people living with chronic conditions. 8 , 9 , 10 , 11 , 12 , 13 However, peer-support interventions for young adults are generally understudied. 14 , 15 , 16 While the evidence is limited compared to research in adult populations, peer-based interventions have been shown to support effective self-management, promote positive health outcomes, and decrease loneliness for adolescents and young adults with chronic conditions. 2 , 17 , 18 Further study of these types of interventions in this population is needed, as young adults are a unique population with distinct psychosocial needs. 1 While young adulthood is generally described as ages 18–26, 19 broader definitions that focus on life milestones (i.e., living independently but not yet having children of one’s own) rather than chronological age may be more appropriate for those living with chronic conditions, and be more aligned with the broader concept of emerging adulthood. 1 The COVID-19 pandemic exacerbated loneliness in young adults with and without chronic conditions and created a pressing need for virtual peer-support programming. 17 , 20 These types of programs utilize technology to facilitate peer interactions, as opposed to in-person meetings, and may be synchronous (i.e., support groups using a video conferencing platform or a live chat group such as Slack) or asynchronous (i.e., an online forum such as Reddit or a social media group such as Facebook). While many in-person social activities have resumed, young adults with chronic conditions may continue to face barriers to in-person participation, such as immunosuppression, mobility limitations, or fatigue. Because of this, virtual peer-support programs may be more easily accessible to some individuals with chronic conditions. A 2022 systematic review of technology-based peer-support interventions for adolescents with chronic conditions identified 32 studies that used discussion forums, online chatting, or video conferencing to facilitate interactions between adolescents who shared the same chronic condition. 7 Compared to face-to-face peer support, few virtual peer-support programs have been comprehensively evaluated in the literature, indicating a gap that does not match the apparent demand for these types of interventions. 7 Additionally, there are gaps in the literature on peer support which focuses on the young adult populations. Therefore, the aims of this mixed methods study are to (1) describe the psychosocial and peer-support needs and experiences of a medically diverse sample of young adults with chronic conditions and (2) evaluate the acceptability of an existing virtual peer-support program for young adults with chronic conditions.

The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Katherine Melton reports financial support was provided by Agency for Healthcare Research and Quality (AHRQ). Katherine Melton reports a relationship with Generation Patient that includes: consulting or advisory. Dr. Melton receives an honorarium from the Patient-Centered Outcomes Research Institute grant EASO-29054 awarded to Generation Patient. This work is not directly connected to the present study. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.