Community Support for Injured Patients: A Scoping Review and Narrative Synthesis
Program in Global Surgery and Social Change, Harvard Medical School, Boston, Massachusetts, USA
Department of Surgery, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA
Countway Library, Harvard Medical School, Boston, Massachusetts, USA
Institute of Applied Health Research, University of Birmingham, Birmingham, UK
Centre for Global Surgery, Department of Global Health, Faculty of Medicine and Health Sciences, Stellenbosch University, Stellenbosch, South Africa
#Corresponding Author: Prof Justine Davies; J.Davies.6@bham.ac.uk, Corresponding Author for Submission: Rashi Jhunjhunwala; rjhunjhu@bidmc.harvard.eduAbstract
BACKGROUND
Community-based support 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 community and peer support groups for injured patients.
ELIGIBILITY
We included primary research on studies that evaluated community 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.
CHARTING METHODS
We utilized a narrative synthesis approach to data analysis.
RESULTS
4,989 references were retrieved from database search; 25 were included in final data extraction. There was a variety of methodologies represented, and the groups represented 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.
CONCLUSIONS
community-based peer support groups can provide education, community, and may have implications for retention in care for injured patients.
Article notes
Competing Interest Statement
The authors have declared no competing interest.
Funding Statement
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.
Introduction
The 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 often require care for ongoing psychological issues or matters of daily living which are often neglected by 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 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 and impact of community and 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 use of and benefits 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 community-based patient support 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 supplementary document.
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. 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.
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.
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 or inter-library loan. Of the 99 full texts that were reviewed, 25 studies met criteria for data extraction (Figure 1).
Study characteristics
Of the 25 studies included, eleven used purely qualitative methodology, six were cross-sectional quantitative studies, three used mixed-methods, three were case reports, and there were two randomized controlled trials. Studies were published from 1981 to 2022. Eleven studies were conducted in the US, seven in Canada, and three in both countries. There was one study each from the UK and South Africa. There were two studies in which the peer support occurred in the form of online forums and thereby were not limited by geographic region. Table 2 presents an overview of the 25 studies included in data extraction.
Support Group Characteristics
Community-based peer support 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 the majority 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. Of these fifteen studies, seven reported that the groups were run by professionals rather than participant volunteers, two groups were run by non-professional facilitators, five groups reported that peers volunteered or rotated through leading the groups, and one group utilized one-to-one peer mentorship. 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 and six from philanthropic organizations.
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 (Figure 2).
Thirteen of 25 studies concluded that shared educational or didactic material in the group was a benefit of participation (21–33). 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 (24,26–30,32,34).
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 (21,23–26,28–33,35–42), 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 (24,26,30,33–35,37–39,41–44,25). Social interaction was mentioned as a positive outcome in eleven studies (22–24,26,32,33,36,38,40,42,44).
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 (21,24,26–29,31–33,38–42), and fourteen studies reported that group members felt a sense of not feeling alone (22–24,28,29,31,33–35,37,39,40,42,44) after they joined the group. Group participants in eleven studies reported a benefit to their self-esteem, empowerment, and overall quality of life (22,24,25,32,34,35,37,38,40–42). Six studies noted that support groups gave participants a sense of hope for the future (26,32,35,37,39,42). 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 (25,26,28,30,35,37,39). On a practical 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 (23,26–30,32,40–42,45).
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 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 found support in the form of guidance and coping strategies from the groups (21,26,28,30,32,33). Of the four studies reporting on patients with burn injuries, three reported that participants appreciated the feeling of not being alone that they received from the group (22,35,37). All five studies reporting on intimate partner violence support groups reported that participants gained a sense of group identity or solidarity from the group (31,40,41,43,44). Lastly, four of the five support groups for mixed injuries reported that they appreciated the assistance they received from peers in navigating health and legal systems (23,29,42,45).
Discussion
We found only 25 studies which assessed the benefits of community support groups for injured persons, globally. The majority were created for specific types of injury and only one was located in a low- or middle-income country (South Africa). Injury, especially in males under 30 years of age, is responsible for a significant portion of illness around the world; the need to be retained in care for chronic disabilities that may result from injuries is essential for maximising health and well-being. In addition, the psychological components of both intentional (46) (i.e. interpersonal violence) as well as unintentional (road traffic crashes) injuries can be substantial (47). Community support 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. This scoping review shows there are few community-based peer support groups offered for patients with injuries, and although these studies report on mental health benefits of peer support, there is little data on whether they improve physical health or retention in care.
People with traumatic injuries potentially face a unique challenge in finding peer support after their injury as injured patients often experience multiple types of injuries in the same event resulting in a broad range of outcomes (48). This means that injuries do not easily fit into specific disease-based support groups, which is evident even in the array and distribution of community-based peer support groups identified in this review. While there were four support groups for those with mixed injuries, twenty-one of the groups for which injury-related support groups exist focus on a specific type of injury with which prospective participants could identify. This distribution of injury groups which we found in our review does not represent the full spectrum of injury types. For example, there were no studies which reported on groups that focused on people with abdominal or thoracic trauma, which can result in significant disability and often is followed by fragmentation of care (49). Additionally, there were no specific peer support groups identified for those with mechanism-based injuries, such as road traffic injuries or firearm injury, although these mechanisms are some of the highest contributors to death and disability worldwide (50–52). This fragmentation of support groups that we found means that many people with injuries will miss out on opportunities for support. It also means that there is less of an opportunity for groups to advocate for general injury prevention or access to care, if they are limited to individual types of injuries. Whereas, it is known that there is power in bringing fragmented groups together (53–55).
The studies in this review identified positive benefits of community support groups for injured people, including creation of a group identity and regaining of self-esteem, emotional support and guidance, and delivery of practical knowledge about their disease, recovery and treatment process, or ways to access medical, legal, or social support. Several studies reported multiple types of benefit. This mirrors the positive effects of support groups for people living with diabetes (56), mental health problems (57), and heart disease (58), where support groups have been shown to help with sharing of practical knowledge and health education, social and emotional support, navigation of the medical system, and building trust-based relationships. Further, and highly applicable to injured patients, peer-led and community-based support groups have implications for rehabilitation, which can reduce limitations in functionality (59) especially in LMICs when access to medical care can be difficult to obtain.
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 community-based peer support groups to help bridge the gaps in these much-needed services. There is a lack of reporting on the presence of these types of 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. 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 more narrow or 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).
There are data describing the benefits of community-based peer-to-peer support for patients who experience a broader range of conditions as well, such as mental health conditions or cancer (64), but these studies are also largely limited to high-income country (HIC) settings. In a systematic review and meta-analysis, Lyons et al analysed 8 RCTs evaluating peer group support for people experiencing mental health disorders; 7 of these were set in the USA, and one in Switzerland (65). Moreover, Arjadi et al found only 3 RCTs in their systematic review evaluating online interventions for mental health set in LMICs (66). While cancer and mental health disorders are common in LMICs as well as HICs and support groups for these conditions could improve outcomes for these patients, community-based peer support 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, as the community-based nature of these types of support groups at the center of this topic, it would be difficult to conduct any true RCTs. 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 may be more grey literature available that speaks to the existence and experience of other peer support groups, which was not covered in our review. Additionally, since almost all groups studied existed in high income countries it is highly possible that peer support groups also exist in LMICs but were not studied or published in peer-reviewed journals. This also limits the cultural perspective of the studies, and this review might not include aspects of patient experience and care that are important in countries not included in this study. Finally, with such a small sample of studies, our conclusions are limited.
Conclusions
While sparse, these data show 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.
Data Availability
All relevant data are within the manuscript and its Supporting Information files.
SUPPLEMENT 1: SEARCH STRATEGIES BY DATABASE
PubMed / Medline (National Library of Medicine, NCBI)
2,343 records March 1, 2023
(“Self-Help Groups”[Mesh:NoExp] OR community engagement[tiab] OR community group*[tiab] OR community support[tiab] OR help group*[tiab] OR patient support[tiab] OR peer support[tiab] OR peer counsel*[tiab] OR support group*[tiab] OR online support[tiab])
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(“Wounds and Injuries”[Mesh] OR “Accidents”[Mesh] OR “Violence”[Mesh] OR accidental[tiab] OR accidents[tiab] OR burn[tiab] OR burns[tiab] OR domestic abuse[tiab] OR fallers[tiab] OR falls[tiab] OR fractures[tiab] OR gunshot[tiab] OR injuries[tiab] OR injury[tiab] OR injured[tiab] OR partner abuse[tiab] OR physical abuse[tiab] OR spousal abuse[tiab] OR spouse abuse[tiab] OR stabbing*[tiab] OR trauma[tiab] OR traumas[tiab] OR wound[tiab] OR wounds[tiab] OR violence[tiab])
Cumulative Index to Nursing and Allied Health Literature (CINAHL Complete, EBSCOhost) 1077 records, March 1, 2023
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MH “Wounds and Injuries+” OR MH “Accidents+” OR MH “Trauma” OR MH “Violence+”
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accidental OR accidents OR burn OR burns OR “domestic abuse” OR fallers OR falls OR fractures OR gunshot OR injuries OR injury OR injured OR “partner abuse” OR “physical abuse” OR “spousal abuse” OR “spouse abuse” OR stabbing* OR trauma OR traumas OR wound OR wounds OR violence
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(TI=(accidental OR accidents OR burn OR burns OR domestic abuse OR fallers OR falls OR fractures OR gunshot OR injuries OR injury OR injured OR “partner abuse” OR “physical abuse” OR “spousal abuse” OR “spouse abuse” OR stabbing* OR trauma OR traumas OR wound OR wounds OR violence)) OR (AB=(accidental OR accidents OR burn OR burns OR domestic abuse OR fallers OR falls OR fractures OR gunshot OR injuries OR injury OR injured OR “partner abuse” OR “physical abuse” OR “spousal abuse” OR “spouse abuse” OR stabbing* OR trauma OR traumas OR wound OR wounds OR violence))
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PubMed: 2,343
CINAHL: 1077
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total # of references retrieved across 3 databases March 1, 2023: 4,989