Peer Support for Individuals with Major Limb Loss: a Scoping Review

BACKGROUND: Major limb loss can have profound physical and psychosocial implications for individuals, impacting their quality of life and well-being. Despite the effectiveness of peer support in improving outcomes for various chronic conditions, its impact on individuals with major limb loss remains understudied. OBJECTIVE(S): This review aims to explore the existing literature on peer support for individuals with major limb loss. Specifically, exploring how the literature defines peer support; examining its implementation, identifying outcomes measured in peer support interventions, assessing the benefits for individuals with major limb loss, and identifying barriers associated with peer support provision. STUDY DESIGN: This review followed Arksey and O'Malley's methodological framework, analysing relevant literature to identify evidence, definitions, and key factors related to peer support for individuals with major limb loss. METHODOLOGY: A comprehensive search in January 2023 utilized databases: MEDLINE, PsychInfo, Embase, and CINAHL. After a two-phase screening process, articles meeting specific criteria were included. Thematic and descriptive numerical analyses were applied to the extracted data. FINDINGS: Twenty-two articles were reviewed. Peer support was described as an opportunity to provide education, advice, and encouragement between individuals with lived experiences. Across the two intervention-based studies investigating peer support programs, outcome measures included physical, psychological, social, and quality of life. Qualitative studies described perceived benefits as improved psychosocial well-being and the opportunity to exchange knowledge. Perceived barriers included a lack of formal training and male-dominated groups, which deterred individuals with amputation from participating. CONCLUSION: The evidence from the findings of the review sheds light on the current understanding of peer support for individuals with amputation. Due to the limited number of studies available, future research is necessary to develop and evaluate the effectiveness of peer support interventions tailored to this population.

et al. 13 used PeerTECH, a peer support program supplemented by technological use, and found improvements in quality of life, self-management, and selfefficacy for managing health conditions, including mental illnesses such as schizophrenia and bipolar disorders, and comorbidities like diabetes and cardiovascular disease.Proudfoot et al. 14 examined the inclusion of peer support in a psychoeducational program and found that the peer support programs led to greater adherence to treatment compared to the unsupported program.In addition, the peer support group led to decreases in stigmatization, a reduction in anxiety and depression. 14Similarly, individuals with diabetes reported that community-based peer support programs led by trained peers showed improvements in symptoms of depression, communication with healthcare practitioners, healthier lifestyle behaviours and increased self-efficacy. 15though there is a breadth of evidence available about peer support among other populations with chronic conditions (e.g., diabetes, mental illnesses), less is known about the nature and scope of research on peer support for individuals living with major limb amputation.A scoping review on peer support for trauma survivors, which included individuals with traumatic amputations, found that peer support provided trauma survivors with socioemotional support as well as assistance in daily management and life navigation postinjury. 16However, studies of peer support following trauma may not be transferable to all individuals with limb loss, most of whom have amputations due to diabetes. 17To address this gap, the purpose of this scoping review was to examine the extent, nature, and scope of existing literature on peer support for people living with major limb loss to inform future research and practice.

METHODOLOGY
A scoping review was performed to identify existing literature and clarify the definitions and key factors associated with this topic. 18The review followed Arksey and O'Malley's five-stage methodological framework, which outlines: (i) identifying the research questions; (ii) identifying relevant studies; (iii) study selection; (iv) charting the data; and (v) collating, summarizing, and reporting the results. 19

Identifying Research Question (Stage 1)
The research questions used to guide the review were: (1)  how does the current literature define peer support?(2) how has peer support been implemented (e.g., programs, interventions, informal supports) and at what stage (e.g., acute care, rehab, community)?(3) what are the outcomes measured in peer support interventions? (4) what are the benefits of peer support for the quality of life of individuals with major amputations, and (5) what are the risks or barriers to the provision of peer support?

Identifying Relevant Studies (Stage 2)
Literature searches were conducted in a period spanning January 2023 to April 2023 using the electronic databases of MEDLINE, PsychInfo, Embase, and CINAHL.The search strategy was customized to each database and used key terms that included "peer support", "amputation", and "major limb loss" (see Appendix A-D for search strategies).To supplement these searchers, a hand search of reference lists of retrieved articles was also conducted to scan for additional relevant studies.The four databases and handsearched articles were uploaded to the software Covidence.A two-phase screening process was conducted; the first involved the elimination of articles based on title and abstract, and the second involved a full-text review.To establish inter-rater reliability, two authors (Di Lella A.M and Costa-Parke A) separately conducted each phase and then met to reach a consensus.Disagreements between reviewers were resolved by consensus or by the decision of a third reviewer (MacKay C).

Study Selection (Stage 3)
The following inclusion criteria were used to guide the search and retrieve the articles: (1) published in the English language; (2) individuals with a major amputation, including trauma-related, surgical-related (cancer, infection, vascular, etc.), and congenital; (3) age range: 18 years and older; (4) studies should include some aspect of peer support, either formal or informal; (5) participants have either received peer support or provided peer support (with or without training); (6) articles should include primary data.Articles were excluded if: (a) they focused on minor limb amputations; (b) they focused on amputations in youth populations; (c) dissertations, study protocols, editorials, and conference proceedings.

Charting the Data (Stage 4)
The data-charting form was developed using an Excel sheet by two authors (Di Lella A.M and Costa-Parke A) to maintain the consistency of the variables being extracted.The authors independently extracted the data and met to reach a consensus on the variables.The data extracted were summarized and inputted into tables that included: (i) study details (e.g., title, authors, year, country); (ii) population characteristics and eligibility (e.g., type of major limb amputation); (iii) study design/methodology (e.g., study objectives, types of measures used); (iv) peer support (e.g., definition, delivery method, practice setting); and (v) major findings (e.g., how studies define peer support, outcome measures, risks, and benefits).

Collecting, Summarizing and Reporting the Results (Stage 5)
After charting information from included studies, we produced a narrative account of findings in two ways.First, quantitative analysis was conducted including a frequency analysis of the extent, nature and distribution of the studies included in the review.Second, the findings were organized thematically.We used a descriptive approach which involved allocating concepts or characteristics relevant to each research objective into overall categories.This included comparing information across studies, combining similar concepts, and summarizing ideas.Two authors (Di Lella A.M and Costa-Parke A) independently categorized data extracted from the articles to summarize the key ideas identified across articles and later met to reach a consensus on the findings.Other members of the research team were consulted to enhance validity and reduce biases in the results of the study.

Overview of study characteristics
A total of 1103 articles were identified from four databases, and after duplicates were removed, 688 articles remained.The two authors (Di Lella A.M and Costa-Parke A) separately screened the titles and abstracts of the articles and a total of 147 were deemed eligible for full text review.Two authors (Di Lella A.M and Costa-Parke A) individually conducted a full-text review of these 147 and a total 22 articles met the inclusion criteria (Figure 1).
Articles reported primary data using qualitative methods (n=16), randomized controlled trials (RCT) (n=2), crosssectional studies (n=2), cost-analysis (n=1), and noncontrolled retrospective cohort study (n=1).Studies were conducted in Canada (n=4), the United States of America (n=7), Australia (n=4), the United Kingdom (n=2), the Democratic Republic of Congo (n=1), Scotland (n=1), Taiwan (n=1), and Iran (n=1).One of the studies by Anderson et al. 20 was conducted in both the United Kingdom and Australia.The types of amputations discussed among the articles included participants with major lower extremity loss (n=15) or both major lower and upper extremity loss (n=7).Two studies reported on the effects of a peer support intervention.Seven articles explored the impacts of peer support as a primary objective, and 13 articles explored peer support as a secondary or other finding (i.e., the articles did not study peer support but generated findings that demonstrated peer support as relevant to its participants).See the full study details in Table 1.

Definition of peer support
Of the articles included in this study (n=22), there were only six that defined peer support, and these definitions varied in their explanations.2][23] Peer support involved individuals with amputation sharing their lived experiences, either one-onone or between groups of individuals. 21,22,24-26Observing peers further along in their amputation recovery was defined as a form of peer support. 21Three articles indicated that peer support was an opportunity for amputees to educate each other on how to engage in activities of daily living. 22,24,26This included guidance on improving mobility and functionality, such as walking on uneven surfaces, moving through crowds and navigating stairs. 25In addition, amputees were able to receive emotional and moral support from their peers by providing inspiration and encouragement. 22,26

Implementation of Peer Support
Twelve studies discussed the types of settings in which peer support may be implemented.Seven of these studies described programs implemented in community settings, including charities, organizations, and clinics. 21,22,24,27-302][33] While one study discussed peer support being implemented within a hospital and community setting. 34fteen studies described the method by which peer support programs are delivered, which varied between formal and informal delivery formats.][34]36

Outcomes in Peer Support Interventions
The effect of using peer support as a study intervention was explored by two RCTs. 29,30Physical health outcomes were measured using the Short Musculoskeletal Function Assessment, Chronic Pain Grade Questionnaire, 29 and Brief Pain Inventory, 30 which allowed for the assessment of musculoskeletal function and pain, respectively.The studies also examined psychological well-being outcomes such as depression, affect, and self-efficacy, including: the Patient Health Questionnaire Depression Module, 29 the Centre for Epidemiologic Studies Depression, 30 Positive and Negative Affect Schedule, 30 Positive States of Mind, 30 and a Modified Self-Efficacy Scale. 30Social support outcomes were assessed using a multidimensional scale of perceived social support.Lastly, the studies examined quality of life as an outcome, and this was assessed using the World Health Organization Quality of Life Scale 29 and Satisfaction with Life Scale. 30

Benefits of Peer Support
All 22 articles included in this scoping review discussed the physical or psychosocial benefits of the provision of peer support.

Improved physical functioning
Two RCTs 29,30 reported on the impact of peer support on physical function.Wegener et al. 30 reported that participants experienced a decrease in functional limitations six months following their participation in a peer support intervention.However, Turner et al. 29 did not report an improvement; nevertheless, the authors noted possible explanations to be a lower physical baseline prior to study involvement as the participants were older adults. 29

Enhanced psychological well-being
Four studies explored the benefits of psychological wellbeing; these included two studies that examined peer support as a secondary objective 32,37 and two RCTs. 29,30 While Liu et al. 31 found that talking to peers provided an opportunity to alleviate emotional distress.
Nineteen reported on the perceived benefits of social support and connectedness.Amorelli et al. 21reported that when participants observed other individuals with amputation engage in daily activities, they felt hopeful that they could still enjoy life like they once had.Likewise, Richardson et al. 22 discussed how peer support helped participants see that meaningful engagement in life can continue even after limb loss.
Seven articles discussed how amputee peer support groups facilitated the building of friendships and communities beyond those of family and non-amputee friends.The relationships built while engaging in peer support groups were reported by three studies to have reduced the perceived social isolation participants felt after experiencing their amputation .24,31,37Two articles also discussed how the relationships built in peer support groups provided individuals with amputation with emotional and social support. 33,39

Community participation and engagement
Amorelli et al. 21studied peer support as a primary objective, and both studies reported that the advice and support received from peers inspired participants' engagement in the community and daily activities. 38

Impact on self-management, self-efficacy and well-being
Participants reported that this type of social support boosted their self-esteem, confidence, 27,32,37 and self-efficacy. 30In addition, this type of support group led to increased autonomy and well-being.One study, by Richardson et al. 22 examined the impact of peer support from the mentors' perspective and found that it gave them a sense of purpose and a feeling of usefulness.Additionally, Wegener et al. 30 measured the effect of a peer support intervention on self-efficacy and found it led to an increase in participants.
The acceptance and adaptation to major limb loss were explored in two qualitative studies 22,31 and one RCT. 29The study by Liu et al. 31 reported that observing peers' success with limb loss helped participants put their experiences into perspective.Richardson et al. 22 examined the impact of providing support as a peer mentor and found that this was a useful experience, as it not only increased well-being, but it aided the peer mentor in adjusting to their limb loss.The RCT conducted by Turner et al. 29 measured satisfaction with life using the World Health Quality of Life Scale.The study found greater improvements in participants led by a licensed health professional paired with a peer support compared to the control participants that were provided with educational materials and no support from a professional or peer. 29

Barriers and Risks in the Provision of Peer Support
Six studies discussed the perceived barriers and risks to the provision of peer support.

Physical and Organizational-Level Barriers
One cross-sectional study exploring peer support as a primary objective discussed a physical barrier to peer support. 26Participants in this study reported that the geographical distance of peer support meetings was inaccessible and inconvenient to them.
Nathan et al. 26 reported that the short duration and frequency of peer support meetings deterred participants from joining groups.While Richardson et al. 22 reported that participants felt there was a lack of formal training for peer mentors facilitating peer support programs, which resulted in uncertainty about the role of peers and their reputability.

Individual Level Barriers
Three qualitative studies discussed barriers specific to the individual. 22,24,26Participant reluctance to join support groups stemmed from various factors, encompassing feelings of self-consciousness regarding involvement, 24 apprehension about opening up to peers and displaying vulnerability, 26 or a perception that the discussed topics did not directly address their individual needs. 26The peer mentors facilitating peer support groups also expressed feelings of doubt and uncertainty about whether their delivery of peer support was beneficial to their participants. 22 Richardson et al. 22 reported that peer support was physically and emotionally burdensome for peer mentors and that there was a lack of support for their well-being.Mortimer et al. 28 reported that the information discussed between peer mentors and mentees during informal peer support interventions can be misleading and cause distress to participants.

Barriers to group dynamics
Participants report that peer support groups can be intimidating to engage in due to their "cliquey" environments 24, 26 and they can increase an individual's negative thoughts about their amputation. 35oor leadership and a lack of commonality among group members have also been described as factors deterring amputees from wanting to engage in peer support groups. 26hree studies discussed that their peer support groups were male-dominated, making it difficult for women to connect with other female amputees, and reported a lack of support available for addressing female-specific needs. The inconsistency in definitions might be attributed to the diverse nature of peer support interventions and the contextual variations in their implementation.Comparable challenges in defining peer support have been identified in studies focusing on peer support for mental health and chronic disease populations. 43,44This may be due to the more recent introduction of peer support as an integral part of the healthcare system.This discrepancy underscores the need for standardized terminology to facilitate effective communication and comprehension among researchers, practitioners, and participants.
Peer support groups were positively reported by all studies included in this scoping review.The perceived benefit with the greatest amount of evidence was social support and connectedness.This was achieved through sharing experiences and giving or receiving advice from other group members. 22In a previous integrated review, Reichmann et al. 45 similarly identified that peer support interventions benefited psychosocial outcomes during rehabilitation.The unique value of peer support provides participants with the opportunity to obtain reassurance from others in a similar position as themselves. 34For instance, peers with major limb losses reported that they were able to provide others with feelings of optimism and hope for the future. 21Similar claims were reported in peer support studies for individuals with diabetes, stating that sharing experiences enabled participants to receive validation from others when expressing their frustrations and concerns about their diabetes management. 46 According to Wasilewski et al. 16 this is attributed to participants finding educational information more informative and engaging when delivered by a peer, as they were able to resonate better due to shared experiences.In addition, peer support led to the building of friendships and a community for individuals with major limb loss. 20,22,24,31,39-41Peers were able to share advice amongst each other, which inspired them to engage more in the community, in daily activities, and build a life outside their family and non-amputee friends. 16,42,47 Flexible communication options, like telephone or online platforms, have been proposed as solutions and proven effective in increasing attendance frequency and participation. 20,39,46A meta-analysis of patients with diabetes found that support groups offered through telephone-based communications were equally effective as in person. 16Additionally, barriers to participation or engagement occurred due to a lack of peer mentor training, which resulted in poor leadership skills and selfdoubt among participants and mentors.

Strengths and Limitations
The strength of this scoping review is in the methodological rigour of the approach.This review followed Arksey and O'Malley's methodological framework and was guided by a university-affiliated scientific librarian.As a result, this review provides a comprehensive summary of existing literature on the topic of peer support specific to individuals with amputations.This scoping review had some limitations.First, most of the articles included in this study did not explore peer support as their primary objective.This and the lack of RCTs made it difficult for the authors to understand the direct impact of peer support on health outcomes, as most studies only focused on its perceived benefits.This limited our study objective to understanding the impact of peer support as an intervention.

CONCLUSION
This scoping review provided an understanding of what is known in the literature about peer support and people with major limb amputations.For this population, studies have shown that there are many perceived benefits to the provision of peer support.However, given the small number of studies in this field, future research is needed to explore the implementation process and evaluate the effectiveness of peer support for this population.

22,26
TI voluntary OR AB voluntary OR SU voluntary) N2 ((TI work?OR AB work?OR SU work?) OR (TI care OR AB care OR SU care) OR (TI involvement OR AB involvement OR SU involvement) OR (TI help?OR AB help?OR SU help?) OR (TI counsel?OR AB counsel?OR SU counsel?))) OR AB user?OR SU user?) N2 ((TI led OR AB led OR SU led) OR (TI run OR AB run OR SU run) OR (TI help?OR AB help?OR SU help?) OR (TI support?OR AB support?OR SU support?) OR (TI visit?OR AB visit?OR SU visit?) OR (TI based OR AB based OR SU based) OR (TI deliver?OR AB deliver?OR SU deliver?))) TI lay? OR AB lay? OR SU lay?) N2 ((TI led OR AB led OR SU led) OR (TI run OR AB run OR SU run) OR (TI help?OR AB help?OR SU help?) OR (TI support?OR AB support?OR SU support?) OR (TI visit?OR AB visit?OR SU visit?) OR (TI based OR AB based OR SU based) OR (TI deliver?OR AB deliver?OR SU deliver?) OR (TI worker# OR AB worker# OR SU worker#) OR (TI person?OR AB person?OR SU person?)))TI peer OR AB peer OR SU peer) N2 ((TI group* OR AB group* OR SU group*) OR (TI support* OR AB support* OR SU support*) OR (TI coach* OR AB coach* OR SU coach*) OR (TI mentor* OR AB mentor* OR SU mentor*))) TI leg OR AB leg OR SU leg) OR (TI knee OR AB knee OR SU knee) OR (TI arm OR AB arm OR SU arm) OR (TI foot OR AB foot OR SU foot) OR (TI hand OR AB hand OR SU hand) OR (TI wrist OR AB wrist OR SU wrist) OR (TI ankle OR AB ankle OR SU ankle) OR (TI limb OR AB limb OR SU limb)) N3 (TI amputat* OR AB amputat* OR SU amputat*))