https://orcid.org/0000-0002-0970-8369
Figures
Abstract
Background
Community-based peer support (CBPS) groups have been effective in facilitating access to and retention in the healthcare system for patients with HIV/AIDS, cancer, diabetes, and other communicable and non-communicable diseases. Given the high incidence of morbidity that results from traumatic injuries, and the barriers to reaching and accessing care for injured patients, community-based support groups may prove to be similarly effective in this population.
Objectives
The objective of this review is to identify the extent and impact of CBPS for injured patients.
Eligibility
We included primary research on studies that evaluated peer-support groups that were solely based in the community. Hospital-based or healthcare-professional led groups were excluded.
Evidence
Sources were identified from a systematic search of Medline / PubMed, CINAHL, and Web of Science Core Collection.
Results
4,989 references were retrieved; 25 were included in final data extraction. There was a variety of methodologies represented and the groups included patients with spinal cord injury (N = 2), traumatic brain or head injury (N = 7), burns (N = 4), intimate partner violence (IPV) (N = 5), mixed injuries (N = 5), torture (N = 1), and brachial plexus injury (N = 1). Multiple benefits were reported by support group participants; categorized as social, emotional, logistical, or educational benefits.
Citation: Jhunjhunwala R, Jayaram A, Mita C, Davies J, Chu K (2024) Community support for injured patients: A scoping review and narrative synthesis. PLoS ONE 19(2): e0289861. https://doi.org/10.1371/journal.pone.0289861
Editor: Rayan Jafnan Alharbi, Jazan University College of Applied Medical Science, SAUDI ARABIA
Received: July 26, 2023; Accepted: January 8, 2024; Published: February 1, 2024
Copyright: © 2024 Jhunjhunwala et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Data Availability: All relevant data are within the manuscript and its Supporting Information files.
Funding: This study was conducted as part of the Equi-Injury Study, funded by the UK National Institute of Health and Care Research, NIHR Global Health Groups Call 3, application 133135. Authors who received award are JD and KC. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Competing interests: The authors have declared that no competing interests exist.
Introduction
The World Health Organization (WHO) estimates that 4.4 million people die from injuries such as acts of violence, road traffic accidents, falls, and burns annually, and 90% of these deaths occur in low- and middle-income countries (LMICs) [1]. Millions more suffer non-fatal injuries that require extensive medical care and support [2]. Injured patients often face many barriers to seeking, reaching, and receiving care [3]. These barriers can prevent or delay rehabilitation that allows for return to optimal function, especially after the acute injury has been addressed. Given the potentially chronic conditions that result from injury, retention in care is necessary. However, injured peoples’ needs go beyond retention in medical care; they can also require care for ongoing psychological issues or matters of daily living which are often not addressed within healthcare systems.
For patients with other medical conditions, peer and community support has been shown to facilitate access to healthcare through improved retention of current care, introduction to other providers of care, and provision of information and psychological support [4–7]. Peer support has long been used within mental health services and has been defined as social emotional support that is mutually offered or provided by those with similar lived experiences [8]. This process of support, companionship, and assistance often counter feelings of loneliness, discrimination, and frustration. The most common form of peer support has been self-help groups, which have been defined as a voluntary small group for mutual aid [9]. Studies on peer support amongst HIV patients also demonstrate increased retention in care, improved anti-retroviral therapy adherence and viral suppression, and increased financial and moral support [10, 11]. Further, studies of pregnant women demonstrate the positive impact that peer-support can have on motherhood and coping with issues like substance use [12, 13]. Engaging the community, especially for historically marginalized groups, has also been demonstrated to result in positive health outcomes [14, 15]. Further, meaningful engagement of and advocacy by members of the HIV/AIDS community has been shown to lead to improved HIV/AIDS services and policy changes that lead to better access to care and service provision [16, 17].
Despite the similar needs of injured patients for ongoing medical care and the often life-changing nature of their injuries requiring psychological and physical support, there is little known about whether community-based peer support (CBPS) groups exist, benefit injured persons, or whether they play a role improving and retaining access to acute and chronic injury care. This scoping review aims to identify the extent, distribution, benefits, utility, and impact of community-based peer support groups for injured patients.
Methods
This scoping review is conducted based on the expanded Arksey and O’Malley framework and uses PRISMA-ScR guidelines [18, 19].
Defining the research question
We aimed to answer the question: what research has been done on the extent, distribution, benefits, utility, and impact of health-system independent community-based support groups (i.e. those which are not based in healthcare facilities or run by healthcare professionals) for injured persons?
Search strategy
Studies reporting on CBPS groups for physical injuries were identified by a systematic search of Medline / PubMed (National Library of Medicine, NCBI); CINAHL (CINAHL Complete, EBSCOhost), and Web of Science Core Collection (Clarivate). Controlled vocabulary terms (i.e., MeSH; CINAHL thesaurus subject headings) were included when available and appropriate. The search strategies were designed and carried out by a librarian (CM). No language limits or date restrictions were applied. The exact search terms used for each of the databases are provided in the S1 File.
These searches were undertaken on March 1st, 2023. We also searched the grey literature via Google searches, reviewed injury society and trauma society web pages, and communicated with global experts in the field of injury research to identify additional studies evaluating the impact of these groups.
Study inclusion and exclusion
Study inclusion and exclusion criteria are shown in Table 1. We included primary research studies as well as those which describe advocacy or policy changes to manage injuries, since community support groups have been advocates for improved care for other conditions such as HIV/AIDS [16, 17].
We excluded studies that evaluated groups that were hospital or rehabilitation facility-based or led/created by healthcare providers. We also excluded all studies that focused on Post Traumatic Stress Disorder (PTSD) where it was not clear that the PTSD occurred because of physical injury.
Study screening & data extraction
All studies found were uploaded into Covidence for screening and data extraction. Covidence is a web-based collaboration software platform that streamlines the production of systematic and other literature reviews [20]. Two reviewers (RJ, AJ) screened all titles and abstracts independently for inclusion. In case of disagreement, RJ and AJ resolved conflicts through discussion. This process was repeated for full text review in Covidence.
A data extraction form was developed and each of two reviewers independently extracted data from each article, after which consensus was reached through review and discussion. Study data points collected were study design, funding, injury type, the study population, number of participants, what content was shared in the group, and discussion themes in the group. We also collected data on the country in which the support group was based, the country of the study’s first and last author, and the years the study was conducted and published.
Data analysis
We approached the data analysis for this review via a narrative synthesis methodology. This methodology was chosen as it is a widely utilized and accepted mechanism for conducting scoping reviews, as it is a way to synthesize and aggregate the existing body of knowledge on a topic to then elucidate areas of opportunity for further investigation. Since our inclusion criteria did not preclude any specific study methodologies, we expected variety and heterogeneity in our final study sample. We did not assess study quality in this scoping review as we believed all relevant articles per the inclusion criteria should be assessed.
Synthesis of results
The outcomes were grouped into three categories. The first category was study characteristics, which includes study methodology, years during which the studies were conducted, geographic location of support groups, and presence or absence of study funding. We next reported on support group characteristics, including type of injury, number of participants, leadership, and facilitation of the groups, and whether the group itself received funding. Finally, we reported the summary of benefits described by the support group members–this was categorised by outcomes for all injury types together and then by specific injury type.
Results
Study characteristics
4,989 references (PubMed: 2343; CINAHL: 1077; Web of Science: 1569) were retrieved from the database searches on March 1, 2023. Duplicate records were removed using EndNote; import into Covidence resulted in 3489 unique references for screening. Of these, 112 were included for full text review. Full text was not recoverable for 13 studies due to unavailability online through Harvard libraries, inter-library loan, or other formal retrieval mechanisms. Four of 13 unavailable studies were published prior to 1990 and contact information for the authors was not available. Attempts to contact the other nine authors were unsuccessful. Of the 99 full texts that were reviewed, 25 studies met criteria for data extraction (Fig 1).
Study characteristics
Of the 25 studies included, eleven used purely qualitative methodology [21–31], six were cross-sectional quantitative studies [32–37], three used mixed-methods [38–40], three were case reports [41–43], and there were two randomized controlled trials [44, 45]. Studies were published from 1981 to 2022. Eleven studies were conducted in the US [23, 25, 30, 31, 34, 36, 38, 40, 42, 43, 45], six in Canada [21, 22, 27–29, 44], and three in both countries [32, 35, 39]. There was one study each from the UK [37] and South Africa [41]. There were two studies in which the peer support occurred in the form of online forums and thereby were not limited by geographic region [24, 26]. Table 2 presents an overview of the 25 studies included in data extraction.
Support group characteristics
CBPS groups have been studied for persons with spinal cord injury (N = 2), traumatic brain or head injury (N = 7), burns (N = 4), intimate partner violence (IPV) (N = 5), mixed injuries (N = 5), torture (N = 1), and brachial plexus injury (N = 1). The number of support group members ranged from 2 to 60+, with most of the groups reporting 20–40 active members. Fifteen studies reported on whether group leadership was provided by members themselves or an external facilitator such as professional facilitators, therapists, social workers, or social work or therapy students [22, 25, 27, 28, 31, 34, 36–38, 40–45]. Of these fifteen studies, seven [22, 25, 36–38, 40, 42] reported that the groups were run by professionals rather than participant volunteers, two groups were run by non-professional facilitators [31, 34]. Five groups reported that peers volunteered or rotated through leading the groups [28, 41, 43–45] and one group utilized one-to-one peer mentorship [27]. Data about the group facilitators were unavailable or unclear for the remaining studies. Seven peer-support groups reported receiving funding for the groups’ activities or meetings–one from the Alberta Worker’s Compensation Board [33] and six from philanthropic organizations [23, 25, 28, 38–40].
Benefits reported by support group participants
There were a variety of positive benefits reported by support group members. These were grouped into educational benefits, social benefits, emotional benefits, and logistical benefits (Fig 2). Educational benefits include explanations and descriptions of various disease processes and what participants could expect for their disease course. Social benefits were defined as those benefits that ameliorated the participants’ social network, solidarity with others with similar lived experiences, and community building. Emotional benefits are those benefits that participants indicated were impactful to their sense of self or emotional safety and wellbeing. Lastly, logistical benefits are those that directly pertain to making connections with aid services, legal assistance, guidance on workers’ compensation claims, and other administrative issues.
Thirteen of 25 studies concluded that shared educational or didactic material in the group was a benefit of participation [21–27, 32–34, 41, 44, 45]. Eight studies reported that they valued and appreciated the sharing of medical knowledge, either via dissemination from the group leadership or between participants within the groups [22–25, 28, 33, 34, 44].
From a social perspective, nineteen studies reported that support group members indicated they were able to obtain guidance and coping strategies as a result of group participation [21–23, 25–27, 29–31, 33–36, 38–45], and fourteen studies reported that the groups created a sense of solidarity and group identity that members found lacking in other areas of their lives [22, 23, 27–31, 34, 38–43]. Social interaction was mentioned as a positive outcome in eleven studies [21–23, 27, 31, 32, 35, 36, 40, 42, 44].
Emotional outcomes constituted a substantial portion of the reported benefits. Fourteen of the studies reported that participants found emotional support and/or catharsis as a function of group membership [22–27, 31, 33, 36, 38, 42–45], and fourteen studies reported that group members felt a sense of not feeling alone [21, 22, 25–33, 36, 40, 43] after they joined the group. Group participants in eleven studies reported a benefit to their self-esteem, empowerment, and overall quality of life [22, 28–32, 36, 38, 41, 42, 44]. Six studies noted that support groups gave participants a sense of hope for the future [23, 29–31, 43, 44]. Finally, seven studies reported that participants felt a sense of altruism and being able to give back to other injury survivors as a result of group participation [23, 25, 29, 30, 34, 41, 43]. On a logistical level, eleven studies reported that group members found that they were able to gain assistance in navigating the health, legal, and/or social systems from their peers [21, 23–25, 31, 33, 34, 36–38, 44].
We also evaluated the types of benefits reported by groups for people with specific types of injuries. We focused on studies reporting on brain injury support groups, burn injury support groups, intimate partner violence (IPV) support groups, and mixed injury support groups, as these injury types were the subject of more than two studies included in this review. Table 3 shows the distribution of each type of support reported by each injury group.
Considering the types of benefits reported by people with specific types of injuries, out of the seven studies reporting on brain injury support groups, six studies mentioned that participants guidance and coping strategies from the groups [23, 25, 27, 34, 44, 45]. Of the four studies reporting on persons with burn injuries, three reported that participants appreciated the feeling of camaraderie and reduced isolation [29, 30, 32]. All five studies reporting on intimate partner violence support groups reported that participants gained a sense of group identity or solidarity [26, 36, 38–40]. Lastly, four of the five support groups for mixed injuries reported that they appreciated peer assistance in navigating health and legal systems [21, 31, 33, 37].
Discussion
We found 25 studies which assessed the benefits of CBPS groups for injured persons, globally. The majority were created for specific types of injury, including spinal cord, brain or head, and brachial plexus injuries as well as burns. There were also groups for intimate partner violence (IPV), torture, and some for mixed injuries. All injury support groups except one were located in high-income countries. Most commonly, participants noted gaining social support, emotional support and catharsis, and educational or didactic materials from CBPS groups. Mental health support was the main reported benefit with few data on improved physical health or retention in care.
Our review identified positive benefits of CBPS for injured people, including group identity, regaining of self-esteem, emotional support and guidance, delivery of practical knowledge about their disease, recovery and treatment process, or ways to access medical, legal, or social support. This mirrors the positive effects of support groups for people living with diabetes [46], mental health problems [47], and heart disease [48], which have been shown to disseminate practical knowledge and health education, social and emotional support, navigation of the medical system, and building trust-based relationships. In addition, the psychological components of both intentional [49] (i.e. interpersonal violence) as well as unintentional (road traffic crashes) injuries can be substantial [50]. Further, and highly applicable to injured patients, peer-led and community-based support groups have implications for rehabilitation, which can reduce limitations in functionality [51] especially in LMICs when access to medical care can be difficult to obtain. CBPS groups have been shown to be useful for retention in care and both physical and mental health improvement in other conditions, and thus offer potential for people who have been injured.
People with injuries potentially face unique challenges in finding peer support compared to people seeking support for specific disease processes, since trauma can result in an array of injuries even given the same mechanism [52]. While we found four mixed-injury support groups, twenty-one were injury-specific. Thus, CBPS groups for injured persons are difficult to set up because persons with injuries may not identify with just one injury type. Furthermore, we did not find support groups for people with certain injury types. For example, there were no studies that reported on CBPS groups for abdominal or thoracic trauma, which can result in significant disability and often is followed by fragmented care in which patients suffer unplanned admissions often at multiple different care sites. This fragmentation ultimately isolates patients and contributes to worse outcomes [53]. Additionally, there were no specific CBPS groups for people who have been injured by certain mechanisms, such as road traffic injuries or firearm injury, although these mechanisms are some of the highest contributors to death and disability worldwide [54–56]. Victims of these types of trauma might have similar health needs having gone through the same traumatic mechanism, and peer-support could be useful in navigating their care post-injury. These broader groups can also act as powerful advocacy agents; by bringing people with various injuries and mechanisms together, there is a greater opportunity to advocate for general injury prevention and access to consistent and unfragmented care [57–59].
We found only one study that was conducted in an LMIC setting. Given the high burden of injury in LMICs where trauma care systems can be especially fragmented resulting in worse access and outcomes for patients [60], there is scope for CBPS groups to help bridge the gaps in these much-needed services. This lack of CBPS in LMICs for people with injuries is congruent with the lack of reporting on the presence of CBPS groups in LMICs aside from those developed for patients who carry diagnoses like HIV/AIDS that have been given prominent status on the global health agenda. Worldwide, peer support has shown efficacy in reducing costs of care, engaging those who are often hard to reach, and providing patient-centered support to empower individuals to manage and direct their care [61]. In LMICs, these effects are most often reported in groups that are focused on a defined disease process that are commonly diagnosed in LMIC settings. Twenty-six of the 53 studies in Øgård-Repål et al’s review of peer support groups for people living with HIV were undertaken in LMICs [62] and Ayala reported 27 of the 48 studies in a separate scoping review of peer and community led responses to HIV were based in the global south [63]. CBPS groups may be especially useful in providing psychosocial, knowledge, and logistical support to those affected by the high burden of injuries in LMICs in addition to ameliorating challenges in healthcare access that delay rehabilitation and medical treatment in these settings.
Gaps in the literature
The literature is sparse & highly observational in nature, which limits the conclusions that can be drawn on the effectiveness of the groups. However, given the community-based nature of these types of support groups, it might be difficult to conduct true RCTs. This is reflected in only two RCTs fitting inclusion criteria for our review. Additional observational or survey-based studies might be the only way to discern the effects of the studies. Furthermore, many of the studies that were screened but excluded during this review involved support groups run out of healthcare facilities or under the leadership of healthcare professionals, which shows that while support groups do exist, many still are linked to health care systems.
Limitations
Our scoping review was limited to articles in the databases we searched and to articles for which we were able to locate full texts. There were 13 (out of 112) articles not found by our search strategy that could have added additional insight. There may be more grey literature available that speaks to the existence and experience of other peer support groups, which was not covered. Furthermore, the studies included in this review were heterogeneous both in peer support group characteristics and study design, which limits the generalizability of these findings. Additionally, community-based peer support groups in LMICs may be underrepresented because they have not been studied or written about and thus could not be located via our search strategy. This also limits the cultural perspective of our review, as it might not include key aspects of the patient experience in regions other than North America or Europe. Finally, with such a small sample of studies, our conclusions are limited.
Conclusions
Our study shows that community-based support groups play a role in patient recovery and emotional wellbeing after injury. There is a role for information sharing and support that may lead to increased access and retention of care for injured persons. Aside from access and retention in the medical system, support groups can provide practical guidance for participants in navigating legal systems, as well as in developing connections with other patients and survivors to access to support services. Given the burden of injury that occurs in LMICs, support for development of community-based peer support groups in LMICs may increase access to care and has implications for overall improvement in healthcare delivery.
Supporting information
S1 Checklist. Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist.
https://doi.org/10.1371/journal.pone.0289861.s001
(DOCX)
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