Peer Support Groups: Identifying Disparities to Improve Participation

Abstract

Disparities in psychosocial outcomes after burn injury exist in patients from racial or ethnic minority groups in the United States. Peer support groups can help patients with many psychosocial aspects of recovery from burns; however, access to such support among patients of racial and ethnic minority or low socioeconomic groups are unknown. The present study examined participation rates in outpatient peer support within this patient population. Patients attending outpatient clinic at an urban safety-net hospital and regional burn center with a majority minority patient population were asked about participation in burn survivor group, interest in joining a group, and given validated survey questions about managing emotions and social interactions since injury. Current or past participation in peer support was low (4.2%), and 30.3% of patients not already in support group were interested in joining. Interest in future participation in peer support was highest among Hispanic patients (37.0%) and lowest among Black patients (0%). Logistic regression models demonstrated that increased total body surface area burned, hospital length of stay, and need for surgical intervention were associated with interest in joining or having joined a peer support group. Effectiveness of management of emotions and social interactions were not associated with interest in joining peer support in the future. These findings demonstrate a considerable difference between levels of interest and participation in peer support within this population. Improving access to and education about benefits of peer support in underresourced communities may help to address the variation in psychosocial outcomes of patients across racial or ethnic minority groups recovering from burns.

INTRODUCTION

Advancements in care for burn patients have significantly improved survival rates after burn injury. With falling mortality rates, the focus of burn care has expanded to include improving long-term quality of life after injury. Through the first year of recovery, patients report progressive improvement in overall quality of life,^1,2 however, symptoms of anxiety and depression^1,3–5 and difficulty with social interactions^6,7 remain present. Compounding these issues, a significant portion of burn survivors are unable to return to work,^8–10 or experience psychological stress returning to work after a workplace injury,¹¹ adding loss of income as a major stressor for patients and their families. The trajectory of postburn recovery is not only impacted by burn severity; poorer socioeconomic status and racial or ethnic minority status also are important factors. Patients who identify as racial or ethnic minorities experience less community reintegration^12,13 and lower satisfaction with appearance¹² compared to white burn survivors. The reasons for this disparity are unclear. Total expenditure exceeding income, used as a proxy for economic status, has also been found to correlate with increased psychosocial needs after injury.¹⁴

These social impacts on mental health, hereafter referred to as psychosocial outcomes,¹⁵ can be addressed through participation in peer support group during recovery from burn injury. Peer support participants gain a sense of belonging, positive change in perspective, hope for the future, and the opportunity to give back to other survivors.^16–21 Peer support can improve social reintegration^22,23 and reduce psychological symptoms.²⁴ These support groups may be of particular aid to populations at risk of worse psychosocial outcomes. Despite the growing evidence of the importance of peer support in recovery, to the authors’ knowledge, the rate of participation in peer support among disadvantaged communities has not been explored.

The delivery of culturally competent healthcare requires tailoring of care to the social, cultural, and linguistic needs of patients.²⁵ In order to improve delivery of culturally competent care at our institution, we sought to study access to a utilization of outpatient peer support, a tool aimed at psychosocial recovery from burns, in our predominantly minority and socioeconomically underserved patient population.

The primary aim of this study was to explore current, past, and interest in future participation in outpatient peer support among burn survivors at a single safety-net hospital and regional burn center. The secondary aim of this study was to explore additional factors related to interest in joining an outpatient burn survivor group, including measures of injury severity and psychosocial outcomes after burn injury. Bandura’s theory of self-efficacy states that perception of capabilities may better predict function than objective level of impairment.²⁶ For this reason, we chose scores on the Managing Emotions and Managing Social Interactions subdomains of the Patient Reported Outcomes Measures (PROMIS ©) Self-Efficacy for Managing Chronic Conditions survey as markers for psychosocial outcome. The PROMIS survey used here has better predicted mental health, global health, and disability than both disease severity and diagnosis in patients with chronic neurologic conditions.²⁷

METHODS

Study Design

The study was conducted at a single time point, that is, the study used a cross-sectional design. Assessments were all competed on that same study day but there were three components of the assessment. The first was retrospective assessments by participants regarding prior peer support group attendance. The second was cross-sectional assessments regarding present interest in attending outpatient peer group. The third and final component was prospective assessments by participants regarding future expectations of interest and intent in attending outpatient peer support groups.

Sample Population

Adult patients attending appointments at an outpatient burn clinic affiliated with a regional burn center and safety-net hospital were approached for participation between 06/09/2021 and 09/01/2021. Only patients speaking English or Spanish were eligible. Incarcerated patients and those lacking capacity for consent were excluded. Clinic schedules were reviewed for eligible patients who were then approached at their clinic appointments. This study aimed to evaluate patient interest in outpatient peer support groups so that the burn center can use this data to go to hospital administration for resources to set up peer support. Patients who desired peer support in the interim were given information of local and national burn charities that hold outpatient peer support groups at present. Informed consent was obtained from all participants and study procedures were approved and overseen by the Institutional Review Board at the affiliated university.

Data Collection

Enrolled patients completed a questionnaire about current or past participation in peer support: “After discharge from the hospital, did you join a burn survivor group?,” interest in future participation “If you did not join a burn survivor group, are you interested in joining one?”. These questions were developed by the first author without the assistance of a test developer or reading level specialist. A bilingual burn unit nurse involved in the care of the population here translated these questions to Spanish. Patients also completed two subdomains of the National Institute of Health PROMIS® Self-Efficacy for Managing Chronic Conditions: Managing Emotions (SEME-4) and Managing Social Interactions (SEMSI-4) 4-question short forms, which were developed and calibrated across an array of chronic conditions, and have demonstrated cross-sectional validity.²⁸ Participants were given the option to complete the survey independently or with verbal assistance from the first or second author. Patient demographics (race/ethnicity, payer type, and home zip code), and three indicators of injury severity (percentage of total body surface area burned (TBSA), initial hospital length of stay, and surgical intervention), were collected from the medical record by retrospective chart review.

Statistical Analysis

The rates of participation and interest in participation in outpatient peer support across the whole cohort were calculated along with Wilson score 95% confidence intervals. Subgroup analysis was performed for participation and interest rates by language.

The association between each indicator of injury severity and interest in burn survivor group was examined by Firth logistic regression while adjusting for age and sex. The Firth method was used to avoid separation and small-sample bias. Interest in peer support was defined as current, past, or interest in future participation in burn survivor group.

All subdomains of the 4-item version of Self-Efficacy for Managing Chronic includes 4 items scored from 1 (not at all confident) to 5 (very confident) for a total possible raw score of 20 for each subdomain. Each subdomain has a scale to standardize raw scores to the US population mean 50 with SD 10. For each of the two psychosocial measures administered, the relationship between raw score on the measure (SEME-4 or SEMSI-4) and interest in future participation in a burn survivor group was evaluated using a Firth regression model adjusting for age and sex. Because there was a clustering of participants at the upper limit of each of the two psychosocial scales, a variable indicating whether the score was at the limit was included in each of the two models.

The conventional significance level of 0.05 was chosen. Analyses were done using R version 4.0.4 (Vienna, Austria).

RESULTS

Cohort Characteristics

During the study period, 187 adults speaking English or Spanish had clinic appointments for burn injuries; 5 patients were excluded due to lack of consent capacity or incarcerated status, 53 patients did not attend their scheduled appointments, and 17 patients who attended their clinic appointments were not approached for participation due to high clinic volume and time needed for Spanish interpretation. Of 102 patients approached, 70 agreed to participate in the study for a respondent rate of 68.6%. The median age of participants was 40 years (IQR 27-49), and most were male (65.7%). Demographic data and insurance status are shown in Table 1. The majority of participants identified as Hispanic (77.1%, 54/70), and many patients spoke Spanish as their primary language (40%, 28/70). Most patients (71.4%, 50/70) had insurance through the state of California’s public insurance program for low-income individuals (Medi-Cal). Of 12 self-pay patients, 9 had a secondary form of payment including worker’s comp (2/11), charity/liability (4/11) or were pending Medi-Cal (4/12). Total unemployment in this cohort was 37.1% (25/70), with 15.7% (11/70) of participants unemployed and seeking employment. Based on the US Census data, the median percentage of patients’ home zip code living below the federal poverty line in this cohort was 17.8%.

Table 1.

Cohort demographics and interest in peer support group by race/ethnicity and language

	% of Cohort	Current/Past Peer Support Participation (%)	Interest in Future Peer Support Participation (%)
All participants		4.2 (3/70)	30.3 (20/66)
Race/Ethnicity
Hispanic or Latino	77.1 (54/70)	5.6 (3/54)	31.5 (17/54)
Black or African-American	8.5 (6/70)	0 (0/6)	0 (0/6)
Asian	7.1 (5/70)	0 (0/5)	20 (1/5)
White non–Hispanic	5.7 (4/70)	0 (0/4)	50 (2/4)
Native Hawaiian or Pacific Islander	1.4 (1/70)	0 (0/1)	0 (0/1)
Language		3/70	20/66
English Fluency	60 (42/70)	7.1 (3/42)	17.5 (7/40)
Spanish Fluency without English Fluency	40 (28/70)	0 (0/28)	50 (13/26)
Insurance Type
Medi-Cal	71.4 (50/70)	–	–
Self-Pay	17.1 (12/70)	–	–
Medicare	5.7 (4/70)	–	–
Private	5.7 (4/70)	–	–

Outpatient Peer Support Utilization and Interest

Only 4.2% of patients had participated in peer support, all of whom were English-speaking (3/70, 95% CI 0.011-0.129). No significant difference was seen in peer support participation between English-speaking and Spanish-speaking respondents (P= .270). Of patients who had not previously participated in peer support, 30.3% (20/66, 95% CI 0.199-0.430), were interested in joining a support group. The majority of patients who wanted to join a support group were Spanish-speaking (65%, 13/20). More Spanish-language compared to English-language respondents wanted to join a group (50.0% vs 17.5%, P = .007). No Black or African-American participant indicated interest in peer support (0/6, P = .329).

Clinical/Psychosocial Factors and Peer Support Interest

Higher TBSA, increased hospital length of stay and surgical intervention were each significantly associated with peer support current, past, or interest in future participation in peer support (Table 2). More specifically, each doubling of TBSA was associated with an estimated 37% higher odds of participation or interest in a burn survivor group (OR 1.37, 95% CI 1.05-1.82, P = .018).

Table 2.

Multivariable Firth binary logistic regression analysis of clinical factors and burn survivor group interest (joined or wants to join a group)

Factor	Complete Cases n	Factor of Interest Median (IQR), or %	O^R	95% CI	P
log2 %TBSA	69	2 (1–5)	1.37	1.05–1.82	.018
log2 hospital LOS (days)	67	1 (1–7)	1.44	1.11–1.91	.007
Surgery (%)	69	25.7	6.45	2.11–21.76	.001

Neither self-efficacy for self-management of emotions (SEME-4) nor self-efficacy for managing social reintegration (SEMSI-4) was significantly associated with interest in future participation in a survivor group after adjustment for age and sex (Table 3).

Table 3.

Multivariable Firth binary logistic regression analysis of psychosocial factors and burn survivor group interest (wants to join a group)

Factor	Complete Cases n	Factor of Interest Median (IQR)	O^R	95% CI	P
SEME4 raw score	65	16 (13.25–19)	0.96	0.79–1.16	.636
SEMSI4 raw score	66	17 (16–20)	0.83	0.63–1.07	.157

DISCUSSION

Postdischarge burn reintegration and recovery continues to be a challenge. One method to help with this process is the advent of peer support groups where patients and families can discuss the challenges and solutions with others who have shared experiences. The primary aim of this study was to evaluate the use of peer support groups in the patient population of a safety net hospital where most patients are from minority and socioeconomic populations who have limited access to healthcare post discharge. Patients enrolled in the present study were majority non-White and on public health insurance. 16.7% patients were unemployed seeking employment; during the enrollment period, unemployment in the greater Los Angeles area and the Unites States were 10.2% and 5.4% respectively.²⁹ The median percentage of people living below the federal poverty line in patients’ home zip code was 17.8%; the median in the county and Los Angeles United States during the same year were 13.4% and 11.8%.³⁰

There was a substantive gap between active participation and interest in peer support group, particularly for Hispanic patients, demonstrating an unmet need in this population of burn survivors. Previous studies of English speaking burn patients from across the Unites States and internationally have reported participation in peer support closer to 50%^21,22; only 20% of one study’s cohort was minority.²² A single-center study where 95% of the cohort was Caucasian reported 17% of the cohort participated peer support.³¹ In contrast, our study involves an almost 95% minority population and an equally economically disadvantaged population. The unmet need for peer support in the present study highlights a health disparity in burn recovery, particularly for minority-language patients. These findings echo previous work demonstrating less community reintegration among Black and Hispanic adult burn survivors compared to white survivors.¹³

In this study, the proportion of Hispanic participants who wanted to join a support group in the future was significantly higher than non-Hispanic participants, though the lack of interest in peer support among Black survey participants was not statistically significant. Because of the small sample size of Black patients in the present cohort, careful consideration to ensure adequate sample sizes of this population are enrolled are necessary to estimate the interest in peer support in this patient population. The reasons for these differences in interest in peer support across groups are not known. A study of an adolescent burn camp found that attendees of racial and ethnic minorities experienced less improvements in self-esteem compared to white burn camp attendees.³² Black patients made up a smaller proportion of burn survivors in this population and may feel numerically isolated in a typical peer support group. Mistrust of the medical system may also play a role in lack of interest. For this reason, developing more targeted peer support with involvement of cultural liaisons, such as community organizations, can help burn care teams to better understand how to help specific underserved populations. The data from this study also demonstrate the need for more Spanish-language peer support groups and educational materials.

Previous work has reported distance and lack of awareness as primary barriers to participation in peer support³¹ Lifestyle coaches of adults with diabetes participating in the National Diabetes Prevention Program rated inability to take time off work as the greatest barrier to lifestyle change in their lower income participants,³³ Residents of an underserved neighborhood reported lack of childcare, lack of time, and low awareness as barriers to joining physical activity classes.³⁴ Similar barriers may be at play in this population. Further, expenditures beyond a patient’s income have been associated with greater psychosocial needs after burn.¹⁴ Previous research has demonstrated the need for integration of acute and community services to make psychosocial recovery a central component of the rehabilitation process.³² Further research to optimize peer support should include multiple aspects of the psychosocial support network, including but not limited to burn teams, peer support teams, patient families, and charity organizations. Improving access to peer support in this population through charity partnerships and ongoing education about the benefits of peer support in the outpatient setting may help address the need in this population.

The secondary aim of this study was to assess clinical and psychosocial factors impacting interest in peer support. There has been conflicting data on the relationship between TBSA and psychosocial outcomes,^5,31,35 therefore we sought to explore the relationship between severity of injury and interest in peer support. TBSA, longer hospital length of stay, and surgical intervention were each associated with an increased odd of interest or active participation in peer support. The desire for more peer support in patients with more severe burn injuries is a finding consistent with previous work.^22,31 One study found a barrier to participation in peer support was the belief that one’s injuries were not severe enough to merit participation.^31,36 This observed relationship may stem from those with more severe injury being engaged in other outpatient services such as physical or occupational therapy, where the value of peer support may be reinforced. These findings about injury severity and interest in peer support helps target patients and families who would benefit from peer support and can be approached near the end of their inpatient stays for information about outpatient support options.

Burn survivors report high rates of depression, anxiety, and posttraumatic stress postinjury.^1,3–5 Therefore patients with lower Self-Efficacy for Managing Emotions scores were expected to have greater interest in joining peer support group. Similarly, because burn survivors have reported that support from their social networks is a critical component of burn rehabilitation,^21,37 lower Self-Efficacy for Managing Social Interactions scores were hypothesized to be associated with greater interest in support group participation. However, neither SEME-4 nor SEMSI-4 scores were significantly associated with interest in joining a peer support group, suggesting that motivation to participate in peer support may not be principally driven by difficulties coping with these specific aspects of recovery from injury. Qualitative research demonstrates that the benefits patients derive from peer support are multifactorial^18–20; patient motivations for interest in participation in peer support may be similarly variable. Further study on this topic could explore differences among minority group attendees and nonattendees on peer support, such as expectations of benefits of peer support as well as other barriers to peer support not previously described.

The present study was limited to the patient population at a single regional burn center and safety net hospital. The rate of peer support participation in this cohort may reflect institution-level variation, however, an estimated 8.3% of people living in the United States are non–English speaking³⁸; efforts should be made to include these patients in research to address the disparities in psychosocial outcomes discussed here.

CONCLUSION

This study provides evidence of a disconnect between interest and participation in outpatient support groups in a predominately ethnic minority and economically underresourced population. The next steps would be to try to create peer support groups and outpatient resources which are specifically tailored to different minority groups to help improve burn recovery. This involves peer support in multiple languages and utilizing different types of resources such as videos and other mediums to address challenges which are tailored more specifically to different burn survivor groups.

Conflict of Interest Statement: No Disclosures or Conflicts of Interest.