The Effectiveness of Lived Experience Involvement in Eating Disorder Treatment: A Systematic Review
Abstract
Objective:
This systematic review sought to understand the effectiveness of lived experience mentoring, by people recovered from an eating disorder, with clinical samples currently receiving eating disorder treatment.
Methods:
The systematic review was conducted using PsycINFO, MEDLINE, Scopus, and ProQuest Dissertations and Theses Global and reviewing reference lists of included papers. Articles were included if they: (1) were intervention studies that included peer (recovered from an eating disorder) involvement, (2) delivered the intervention to clinical samples (or carers with direct involvement in treatment), (3) were in English, and (4) included quantitative results.
Results:
Eleven studies were included across randomized control trials (RCTs), case series, and a case study; there was variation in quality. Findings varied considerably with some concluding that lived experience mentoring led to significant improvements for mentees, while other studies found no significant differences. Mentor outcomes were often not evaluated. Of those that did assess mentors, there is preliminary evidence for some benefits to participation but also the potential for harm.
Discussion:
There is a need for further research in this area using high-quality RCTs that address the risk of bias. It is important that lived experience peer mentors are monitored on key outcomes, provided with adequate training and ongoing supervision, and are reimbursed for their involvement.
Public Significance:
This systematic review is the first review to focus on the use of peer mentors recovered from an eating disorder contributing to interventions for people receiving treatment for an eating disorder. All included studies present quantitative results. Given the emerging interest of lived experience mentoring, understanding its effectiveness for both mentees and impacts on mentors continues to be of critical importance.
Resumen
Objetivo:
Esta revisión sistemática buscó comprender la efectividad de la consejería de la experiencia vivida por parte de personas recuperadas de un trastorno de la conducta alimentaria, con muestras clínicas que actualmente reciben tratamiento para el trastorno alimentario.
Método:
La revisión sistemática se realizó utilizando PsycINFO, MEDLINE, Scopus y ProQuest Dissertations, and Theses Global y revisando las listas de referencias de los artículos incluidos. Los artículos se incluyeron si: (1) eran estudios de intervención que incluían la participación de pares (recuperados de un trastorno de la conducta alimentaria), (2) administraban la intervención a muestras clínicas (o cuidadores con participación directa en el tratamiento), (3) estaban en inglés y (4) incluían resultados cuantitativos.
Resultados:
Se incluyeron once estudios en ensayos controlados aleatorios (ECA), series de casos y un estudio de caso; hubo variación en la calidad. Los hallazgos variaron considerablemente y algunos concluyeron que la consejería de la experiencia vivida condujo a mejoras significativas para los aprendices, mientras que otros estudios no encontraron diferencias significativas. Los resultados del mentor a menudo no se evaluaron. De los que evaluaron a los mentores, hay evidencia preliminar de algunos beneficios de la participación, pero también del potencial de daño.
Discusión:
Se necesitan estudios de investigación adicionales en esta área que utilicen ECA de alta calidad que aborden el riesgo de sesgo. Es importante que los mentores de pares de la experiencia vivida sean monitoreados en los resultados clave, provistos de capacitación adecuada y supervisión continua, y sean remunerados por su participación.
Reprinted from Int J Eat Disord 2023; 56:331–349, with permission from Wiley. Copyright © 2023
Introduction
Eating disorders are serious mental health disorders that impact psychological and physical well-being (Fairburn & Harrison, 2003) and have one of the highest mortality rates of all psychiatric illnesses (Arcelus et al., 2011; Chesney et al., 2014). A recent systematic review conducted across multiple countries worldwide found an average lifetime prevalence of 8.4% for women and 2.2% for men (Galmiche et al., 2019). Furthermore, the weighted mean prevalence was found to have increased from the year 2000 to 2018 (Galmiche et al., 2019), highlighting the pressing need for improved prevention, early intervention, and effective treatments.
Current Treatment Effectiveness
Current psychological treatments for eating disorders have limited effectiveness. Recent meta-analyses focused on the rate of symptom abstinence following psychological treatment found rates (total weighted percentages) of 35.4% for treatment completers with Bulimia Nervosa (BN) and 50.9% for completers with Binge Eating Disorder ([BED]; Linardon, 2018; Linardon & Wade, 2018). For the treatment of Anorexia Nervosa (AN), the National Institute for Health and Care Excellence (NICE) guidelines recommend three first-line treatments, eating disorder-focused Cognitive Behavioral Therapy (CBT-ED), Maudsley Anorexia Nervosa Treatment for Adults (MANTRA), and Specialist Supportive Clinical Management (SSCM; NICE, 2017). A large, multi-center randomized controlled trial (RCT) for AN comparing the three treatments found no significant differences between them and a rate of 50% of participants achieving a healthy weight and 28.3% achieving criteria for remission at 12-month follow-up (Byrne et al., 2017). A recent systematic review and network meta-analysis concluded current psychological treatments for AN have only modest outcomes and do not significantly differ from each other in effectiveness (Solmi et al., 2021). In studies of Family Based Treatment (FBT) delivered to children with AN and their families, rates of poor outcome have ranged from 22.2% (Lock et al., 2010) to 42% at 12-month follow-up (Eisler et al., 2016). Thus, research focused on improving core treatments or adjunct treatments is of key importance.
Lived Experience Mentoring in Mental Health
The use of mentoring by peers with a lived experience of a mental disorder is a relatively new and increasingly adopted approach. A systematic review and meta-analysis of the use of one-on-one lived experience peer support provided to adults using mental health services found no significant impact on clinical symptoms (White et al., 2020). However, lived experience peer support did increase self-reported recovery and empowerment (White et al., 2020). The quality of the 23 trials was rated low to moderate and thus it was concluded that the effectiveness of lived experience mentoring requires further evaluation with substantial improvements made to the evidence base (White et al., 2020). Another recent systematic review focused on the use of lived experience mentoring digitally and concluded that of the 30 studies (on 24 interventions), the majority found preliminary evidence for clinical effectiveness and acceptability (Fortuna et al., 2020). However, several studies found no statistically significant findings and attrition rates varied widely (Fortuna et al., 2020). While the evidence base is limited and requires the addition of high-quality intervention trials, preliminary data across mental health has demonstrated some promise.
Lived Experience Mentoring and Eating Disorders
The application to eating disorders has been relatively new and limited. Two prior systematic reviews have been conducted. Fogarty et al. (2016) completed a systematic review and qualitative meta-synthesis on the use of peer mentoring for people with an eating disorder. However, of the four included studies, two used non-clinical samples with mentors without lived experience (Bailey et al., 2008; McCarroll, 2012). Of the two included studies with a clinical sample and lived experienced mentors, one was a qualitative doctoral thesis (Lippi, 2000), while the other was the only published paper included in the review (Perez et al., 2014). Lewis and Foye (2022) conducted a more recent review exploring the use of peer mentoring in eating disorders. Their review included 10 papers that focused exclusively on peer support provided by those with lived experience, a combination of intervention and prevention studies and qualitative and quantitative methodologies (Lewis & Foye, 2022). Lewis and Foye (2022) excluded exploratory or phenomenological studies that included co-design methodology for research agendas (such as Perez et al., 2014). Thus, the resulting 10 papers included had no overlap with the Fogarty et al. (2016) review. Lewis and Foye (2022) conducted a thematic qualitative analysis which suggested several benefits for mentees such as increased inspiration for recovery but also possible risks such as exposing mentors to triggering content. Taken together, the two reviews have found some preliminary, but not robust, evidence for the benefit of lived experience mentoring in the field of eating disorders.
Aim of This Review
The aim of the present review is to evaluate the effectiveness of lived experience mentoring in eating disorder treatment. In contrast to the two systematic reviews previously conducted, we included only intervention studies with clinical samples, and focused on quantitative findings (Fogarty et al., 2016; Lewis & Foye, 2022). The present review seeks to clarify what the role of recovered lived experience mentors is with clinical populations who are receiving eating disorder treatment. Furthermore, this review seeks to include only those studies with quantitative results. In doing so, we hope to better understand the role of lived experience mentoring in eating disorder interventions by eliminating confounding factors such as prevention work with non-clinical samples.
Methods
This systematic review was completed in accordance with the PRISMA statement (Page et al., 2021).
Eligibility Criteria
Articles were considered for inclusion in the review if they met the following criteria:
1.
Interventions that included peer involvement (peer-led or co-led/adjunct treatment), delivered to clinical samples or carers with direct involvement in treatment.
2.
Evaluation of quantitative outcomes of the intervention for clinical samples (i.e., participants met diagnostic criteria for an eating or feeding disorder). Prevention studies were thus excluded, as interventions focused solely on carers’ outcomes.
3.
Peers had direct lived experience of an eating disorder and were considered recovered.
4.
Publication in English.
Search Strategy
Four databases (PsycINFO, MEDLINE, Scopus, and ProQuest Dissertations and Theses Global) were selected and an initial search was conducted on April 14, 2022. Search terms were developed collaboratively by the authors and included variations of two key themes, peer counseling and eating disorders, searched in titles, abstracts, and author keywords (see Table 1). In addition, the literature referenced in included papers was scanned to ensure all relevant articles were found. This led to the discovery of the Adamson et al. (2019) case series which was included in the review by Lewis and Foye (2022) and the Hibbs et al. (2015) RCT in a recent review of carer interventions by Hannah et al. (2022).
| Peer counseling | Eating disorders |
|---|---|
| peer* adj5 (provid*, consumer*, survivor*, specialist*, companion*, tutor*, educat*, mentor*, intervention*, listen*, mediat*, befriend*, therap*, work*, counsel*, support*), consumer* adj2 (provider*, survivor*, consultant*), peer* support*, mental health peer*, peer-led*, live experience*, mentor* | eating disorders, anorexia nervosa, binge eating disorder, bulimia, pica, “purging (eating disorders)”, anorexi*, bulimi*, purg*, bing*, OSFED, UFED, EDNOS, ARFID, orthorexia, pica, eat* adj2 disorder*) |
a
Keywords within each search string were connected by Boolean operator “OR” and the two search strings were connected by “AND”. Some keywords specified proximity (e.g., adj5 specifies a word must be within five words to another listed keyword).
Review Strategy
The initial search yielded 744 records (however did not include the fourth database, ProQuest Dissertations and Theses Global). While revising for publication, the search was repeated on September 2, 2022, and extended to include the fourth database. This search yielded 1146 records. Figure 1 depicts the review of studies using the PRISMA flowchart (Page et al., 2021). No automation tools were used. Author MP removed duplicate records and made obvious exclusions (i.e., studies not in the field of eating disorders or in a vastly different area, book chapters, etc.) using titles and abstracts. This left 89 records which both authors reviewed independently to decide which records to review as a full text. Thirty-nine articles were rated by one or both authors as requiring full-text review. Author MP reviewed each full text and compiled a list of reasons for inclusion or exclusion for each which was reviewed by author TW. The authors discussed any discrepancies. Three abstracts of conference presentations were reviewed, and the authors were contacted to check if they had been written up; one study was never written up and two authors did not return correspondence. Therefore, after full-text review, this led to the inclusion of eight studies.
FIGURE 1. PRISMA flow diagram
[Publisher's Note: A color version of the figure, as originally published, appears in the online version of this article at focus.psychiatryonline.org.]
Several studies were published across multiple peer-reviewed articles as additional papers presented secondary analyses or qualitative findings. Where this occurred, the initial article with the primary results was included in overall count of included articles. Articles with secondary analyses are referred to as appropriate. Two studies (Adamson et al., 2019; Hibbs et al., 2015) were added following review of references in included papers and other systematic reviews (as above) and a further study was added as author TW was aware of a new in-press article (Rohrbach et al., 2022).
Data Extraction
The following details were extracted from each included article: Design, intervention type and modality (e.g., RCT and face-to-face), participant characteristics (e.g. diagnosis, age, and sample size), mentor characteristics (such as time recovered, age, and previous diagnosis), key outcome measures for mentees (e.g. eating disorder psychopathology, commonly measured by the Eating Disorder Examination Questionnaire [EDE-Q; Fairburn & Beglin, 2008]) and where available, mentor outcomes, training and supervision, and whether mentors were paid or volunteered. No automation tools were used as author MP manually extracted data from each included article.
Study Quality Assessment
The methodological quality of each included study was reviewed by author MP using the 2010 CONSORT guidelines extension to randomized pilot and feasibility trials (Eldridge et al., 2016). A subset of nine items relevant across all design types was chosen, as has been done in a previous eating disorder review (Robinson & Wade, 2021). The chosen items are specified in Table 2. In addition, the four RCTs included in the review were assessed using the Cochrane Collaboration’s tool for assessing risk of bias (Higgins et al., 2011). All seven items were reviewed and rated as Low Risk, High Risk, or Unclear Risk and an overall description of risk was concluded (see Table 3).
| Study | (4a) Eligibility criteria for participants | (5) The interventions for each group with sufficient details to allow replication, including how and when they were actually administered | (7a) Rationale for numbers in the pilot trial | (13a) For each group, the numbers of participants who were approached and/or assessed for eligibility, randomly assigned, received intended treatment, and were assessed for each objective | (13b) For each group, losses and exclusions after randomization, together with reasons | (15) A table showing baseline demographic and clinical characteristics for each group | (16) For each objective, number of participants (denominator) included in each analysis. If relevant, these numbers should be by randomized group | (17a) For each objective, results including expressions of uncertainty (such as 95% confidence interval) for any estimates. If relevant, these results should be by randomized group | (26) Ethical approval or approval by research review committee, confirmed with reference number | Total |
|---|---|---|---|---|---|---|---|---|---|---|
| Adamson et al. (2019) | Y | Y | N | Y | Y | Y | Y | P | Y | 7/9 |
| Beveridge et al. (2019) | Y | Y | Y | P | Y | Y | Y | P | Y | 7/9 |
| Cardi et al. (2020) | Y | Y | Y | Y | P | Y | Y | Y | Y | 8/9 |
| Hellner et al. (2021) | Y | Y | N | P | N | Y | Y | N | N | 4/9 |
| Hibbs et al. (2015) | Y | Y | Y | Y | Y | Y | Y | Y | Y | 9/9 |
| Perez et al. (2014) | N | P | N | Y | P | Y | Y | P | P | 3/9 |
| Ramjan et al. (2017) | Y | P | N | Y | Y | Y | Y | P | Y | 6/9 |
| Ramjan et al. (2018) | Y | P | N | Y | Y | Y | Y | P | Y | 6/9 |
| Ranzenhofer et al. (2020) | Y | Y | Y | Y | Y | Y | Y | P | P | 7/9 |
| Rohrbach et al. (2022) | Y | Y | Y | Y | Y | Y | Y | Y | Y | 9/9 |
| Steinberg et al. (2022) | Y | Y | N | N | N | Y | Y | Y | N | 5/9 |
a
Y=Yes; criteria fulfilled. N=No; criteria not fulfilled. P=Partial; criteria partially fulfilled. Item descriptions are replicated from Eldridge et al. (2016).
| Study | Selection bias–Random sequence generation | Selection bias–Allocation concealment | Performance bias | Detection bias | Attrition bias | Reporting bias | Other bias | Conclusion |
|---|---|---|---|---|---|---|---|---|
| Cardi et al. (2020) | Low Risk–Excel randomization used | Unclear Risk–Unknown if allocation predetermined | Unclear Risk–treatment centers blinded, unclear what participants told | Low Risk–Treatment centers blinded | Unclear Risk–Missing data handled well but attrition reasons not specified. Unequal attrition across groups–unclear if significant | Low Risk–Protocol published in advance and outcome data consistent with intentions | Low Risk–no other apparent bias | Some Risk |
| Hibbs et al. (2015) | Unclear Risk–External randomization but method not specified, and some randomization balanced by site and severity | Low Risk–Randomization by an independent database programmer | High Risk–No blinding (not possible) | Low Risk–Blinded assessors | Unclear Risk–Missing data handled well and use of ITT analyses. Unclear if attrition equal across groups. | Low Risk–Protocol published in advance and outcome data consistent with intentions | Low Risk–no other apparent bias | Some Risk |
| Ranzenhofer et al. (2020) | Low Risk–Random number generator used | High Risk–Blocks of 3 generated | High Risk–No blinding | Unclear Risk–Not reported | Low Risk–Attrition described well, ITT analyses | Low Risk–Outcomes pre-registered | Unclear Risk-Potential bias with recruitment (online methods not reported) | Some Risk |
| Rohrbach et al. (2022) | Low Risk–SPSS function to produce random numbers used | Low Risk–Blocks generated by independent researcher, concealed from principal researcher | High Risk–No blinding | Unclear Risk–Blinded assessors used for intervention check. Unknown remain outcomes | Low Risk–Attrition equal, missing data imputed, reasons specified | Low Risk–Protocol published in advance and outcome data consistent with intentions | Low Risk–no other apparent bias | Some Risk |
a
Item headings are replicated from Higgins et al. (2011). Each item is rated as Low Risk, High Risk, or Unclear Risk.
Results
Study Characteristics
Key information about each included study is presented in Table 4. Of the 11 studies included, 4 were RCTs, 1 was a case study, and the remaining 6 were case series. The majority of studies focused on adult outpatients while three focused on young people receiving FBT and two focused on carers of inpatients (varying ages). Participants (and recovered mentors) across all studies came from several diagnostic groups (but most commonly AN), were predominantly female, Caucasian, and young adults (i.e., most commonly in their 20s). Rohrbach et al. (2022) did not require a diagnosis of an eating disorder however most of the sample had either previously been diagnosed with an eating disorder (62.5%) or symptom severity indicated a diagnosis (25.6%). Therefore, considering the cohort of participants described as “Eating problems, but likely no ED diagnosis” were in the minority (11.8%), it was decided to include this paper given over 300 participants represented a clinical sample. Key outcomes varied across studies, but most included measures of weight or Body Mass Index (BMI), eating disorder psychopathology, quality of life, and mood. Key outcomes for mentors were only reported on in some studies (n=3 quantitative, n=1 qualitative only). Training and supervision and requirements for how long mentors needed to be recovered were reported on in most studies but it was often not clear whether mentors were paid or volunteered. The requirement for recovery duration was typically assessed via self-report.
| Study | Design | Intervention and modality | Tx group n | Control group n | Sessions N | Mentee characteristics (diagnosis, gender, age, ethnicity, SES indicators where reported) | Mentor characteristics (N, previous diagnosis, gender, age, ethnicity, SES) | Mentee outcomes | Mentor outcomes | Mentor training/ supervision and payment | Recovery criteria for mentors |
|---|---|---|---|---|---|---|---|---|---|---|---|
| Adamson et al. (2019) | Case Series | Augmented inpatient treatment, integrating carers using ECHOMANTRA. Past recovered patients co-facilitated a group workshop for carers. Other elements of intervention were not peer led or co-led and were typically one-on-one. | 31 patients and 21 of their carers | 152 patients (audit data spanning 10 years) | 1 with carers involving a peer mentor. | Patients: All AN and female, age M=27.0 SD=8.8 (range not reported), years of education M=15.7 SD=3.1, ethnicity not reported. Comparison patients: All AN, age M=26.6 SD=8.7, years of education M=15.1 SD=3.2, gender and ethnicity not reported. | Not reported. | Patients: BMI, EDE-Q, WSAS, HADS, 2 motivation questions. Carers: DASS-21, EDSIS, PVA, CASK, AESED. | None. | Not reported. | Recovered, duration not reported. |
| Carers: 80% female, 66% employed, 20% historical issues of weight and shape concerns, other characteristics not reported. | |||||||||||
| Beveridge et al. (2019) | Case Series | Mentees currently receiving ED treatment. Mentors provided one-on-one peer and emotional support, shared recovery experiences. Development of a Wellness Plan with goals and sessions focused on achieving these. Modality not specified. | 30 | N/A | 13 (up to 3 h each, every 2 weeks). | AN=28, BN=1, OSFED=1. Female 93.3%, age 18–50 years (M=27.8, SD=9.5), 90% Australian, Employment Status=6 full-time and 5 part-time or casual, 11 students, 7 unemployed, one “other.” Highest education=tertiary by 13, secondary by 7, vocational by 3, and 5 currently studying. | N=17 (2 withdrew, characteristics are for n=15). AN=10, BN=3, BED=1, EDNOS=1. Female 93.3%, age 23–39 years (M=29.5, SD=4.3), 80% Australian, Employment Status=3 full-time, 4 part-time, 2 “other,” and 6 students, Highest Education=6 tertiary, 2 vocational, 1 secondary, 6 unreported. | BMI, EDE-Q, DASS-21, BDQ, AQoL-8D, online reflection exercises (qualitative). | EDE-Q, DASS-21, BDQ, AQoL-8D, online reflection exercises (qualitative). | 3-day training at start. Bimonthly group supervision with an ED clinician. Paid role. | 1 year. |
| Cardi et al. (2020) | RCT | RecoveryMANTRA + TAU or TAU. RecoveryMANTRA sessions one-on-one led by either a psychology student, carer or individual recovered from an ED. Workbook and video clips focused on recovery-orientated identity. Text-chat sessions. | 99 | 88 | 6 (1 h, weekly). | N=187. All AN. Female 96.8%, age M=27.81 SD=9.3 (range not reported), 97.5% White, Education Years M=15.47 SD=3.15, Employment Status: Part time=20%, Full time=35.3%, Housewife =2.7%, Sick leave=8.7%, Student=26.7%, Retired=1.3%, Other=5.3%. | N=24. Students n=13, carers n=2, recovered n=9, 91.7% female, age >19 (details not reported), ethnicity, SES, and previous diagnosis not reported. | BMI, EDE-Q, DASS-21, WSAS, motivation to change, therapeutic alliance, cognitive and behavioral flexibility | None. | Two 3-day trainings in motivational interviewing and RecoveryMANTRA, 2 day booster training twice/year. Weekly email or telephone supervision with ED experienced supervisor. Not reported whether paid or volunteered. | 2 years. |
| Hellner et al. (2021) | Case Study | Augmented FBT–peer mentor and family mentor included in treatment team. Peer mentor offered support and self-disclosure, role model for recovery. Family mentor offered support and advice on providing effective nourishment and limiting disordered behaviors. Virtual, one-on-one. | 2 families | N/A | Patient 1=4 peer mentor and 5 family mentor, Patient 2=4 peer mentor and 3 family mentor sessions. Over 4 weeks. Session duration not reported. | Patient 1=AN, age 20. Patient 2=Atypical AN, age 15. Gender, ethnicity and SES not reported. Carer demographics not reported. | Not reported. | Weight, satisfaction ratings, engagements, GAD-7, PHQ-9, EDE-QS | None. | Not reported. | Recovered, duration not reported. |
| Hibbs et al. (2015) | RCT | Evaluation of ECHO vs. TAU for families with a loved one in inpatient treatment. ECHO consisted of self-help book and DVDs and 5 telephone sessions with a coach per caregiver, one-on-one. | 86 patients and 134 of their carers | 92 patients and 134 of their carers | 5 per carer or 10 if a single carer, up to 40 minutes each, fortnightly. | Patients: All AN, Female 97% (ECHO), 93% (TAU), age 12.52–62.72 median=23.16 (ECHO), age 13.73–57.31 median=24.34 (TAU), White 93% (ECHO), 88% (TAU), Employment Status=full time 9% (ECHO) 9% (TAU), part-time 5% (ECHO) 7 (TAU), homemaker/unemployed/sick/retired other 56% (ECHO) 51% (TAU), student 29% (ECHO) 30% (TAU), Missing 1% (ECHO) 3% (TAU), Highest Level Education=No qualification 5% (ECHO) 5% (TAU), O/A Levels 47% (ECHO) 53% (TAU), University/higher degrees 47% (ECHO) 36% (TAU), Other 1% (ECHO) 1% (TAU), Missing 1% (ECHO) 4% (TAU). | N = 20 (5 post-graduate level psychologists, 15 recovered from an ED or carer of a loved one who has recovered). Demographics not reported. | Patients: BMI, EDE-Q, DASS21, WHO-QuoL, Client Service Receipt Inventory. Carers: Client Service Receipt Inventory, DASS-21, FQ, Accommodation and Enabling Scale for Eating Disorders, WHO-QuoL, EDSIS. | None. | 8 face-to-face training days and homework assignments over a 5-month period. Focused on cognitive interpersonal maintenance model, behavior change strategies, and motivational interviewing. Supervision via email, telephone, and face-to-face contact at a minimum of 2 sessions per family. Costs reimbursed but not paid for time (volunteered). | 2 years. |
| | | | | | | Carers: Female 60% (ECHO) 60% (TAU), age 22.22–78.54 median=52.22 (ECHO), age 19.7–78.88 median=53.18 (TAU), White 93% (ECHO) 93% (TAU), Employment Status=full time 40% (ECHO) 45% (TAU), part-time 22% (ECHO) 19% (TAU), homemaker/unemployed/sick/retired other 34% (ECHO) 33% (TAU), student 3% (ECHO) 1% (TAU), Missing 1% (ECHO) 3% (TAU), Highest Level Education=No qualification 8% (ECHO) 7% (TAU), O/A Levels 38% (ECHO) 28% (TAU), University/higher degrees 43% (ECHO) 49% (TAU), Other 9% (ECHO) 13% (TAU), Missing 1% (ECHO) 4% (TAU). | | | | | |
| Perez et al. (2014) | Case Series | Evaluation of MentorCONNECT, a one-on-one program. First phase initiation – establishing boundaries, contact, getting to know each other. Second phase – cultivation, topics vary but are recovery focused. Third phase – separation, mentee becomes less dependent on mentor. Various modalities (communication type as preferenced by mentors). | 58 (Matched with a mentor; M) | 49 (Unmatched–waiting to be matched, not randomized; UM) | Variable, asked to communicate at least once/week for 1 h | N=107. Able to endorse more than 1 diagnosis AN=62% (M), 49% (UM), BN=29% (M), 37% (UM), BED=10% (M), 16% (UM), EDNOS=41% (M), 35% (UM). Mostly female (statistics not reported), age 19–59 years (M=31, SD=8.94), 90.9% (M) and 88.6% (UM) Caucasian. SES not reported. | N=34 (30 recovered from an ED, 4 mental health professionals). Able to endorse more than 1 diagnosis–AN=56%, BN=38%, BED=15%, EDNOS=38%. 100% female, age M=34 years SD=12.88 (range not reported), ethnicity not reported for mentors but 81% Caucasian across entire sample (both mentee groups and mentors). SES not reported. | EDDS, EDQLS, questions about motivation, energy, & confidence towards recovery, treatment compliance, length of mentoring relationship and frequency of communication. | Impact of program–open-ended, qualitative only question. | Receive package of materials and assisted by an experienced mentor. Volunteer. | 1 year. |
| Ramjan et al. (2017) | Case Series | Adjunct to ED treatment. Mentoring program developed using Participatory Action Research. Content flexible, focused on promoting hope. Face-to-face and one-on-one for the majority of mentor and mentee pairings, one was email only due to social anxiety. | 10 | N/A | Variable–minimum 1 h/week contact, and at least 3 of meetings face-to-face. 13 weeks. | AN=7, BED=1, BN=1, OSFED=1. 100% female, age 20–42 (M=29.2, SD=8.2), ethnicity not reported, Paid work=54.5%, Work Hours/week M=34.5 (range 20–40). | N=10. Mostly recovered from AN, some BN (exact numbers not reported). 100% female, age 23–52 years (M= 28.9, SD=8.2), ethnicity and SES not reported. | Domain Specific Hope Scale, SF-12, EDQoL, K10, MCQ. | Domain Specific Hope Scale, SF-12, EDQoL, K10, MCQ. | Aside from initial PAR workshop, details of training/supervision and whether paid or volunteered not reported. | Recovered, average of 5 years, minimum requirement for recovery not reported. |
| Ramjan et al. (2018) | Case Series | Adjunct to ED treatment. Mentoring program using Participatory Action Research. Content flexible, focused on promoting hope. Face-to-face and one-on-one. | 6 | N/A | Variable. 13 weeks. | All AN. 100% female, 18–38 years (M=26.83, SD=7.8), ethnicity and SES not reported. | N=5. All AN. 100% female, age 20–44 years (M=30.4, SD=8.79), ethnicity and SES not reported. | SF-12, EDQoL, K10, MCQ, qualitative feedback. | SF-12, EDQoL, K10, MCQ, qualitative feedback. | Initial PAR workshop, monitoring of weekly logbooks–follow up phone or email support and supervision as needed. Online check in at 6 weeks. Costs reimbursed. Not reported whether mentors were paid or volunteered. | 5 years. |
| Ranzenhofer et al. (2020) | RCT | Adjunct to outpatient ED treatment. Randomized to peer mentoring, social support, or waitlist. Peer mentoring focused on the “Eight Keys to Recovery from an Eating Disorder” and use of recovery record. Social support mentoring focused on life outside the ED and was not focused on ED recovery. Face-to-face or videoconferencing depending on participant location. One-on-one. | 20 Peer Mentorship (PM) & 18 Social Support (SS) | 22 Waitlist (WL) | Variable. 1 h/week, 6 months | AN=13 (PM), 10 (SS), 10 (WL), AAN=2 (PM), 4 (SS), 6 (WL), BN=4 (PM), 3 (SS), 5 (WL), BED=1 (PM), 1 (SS), 1 (WL). Female 100% PM, 94.4% SS, 100% WL. | Number of mentors and demographic information not reported. PM in full recovery for a minimum 2 years and SS no lived experience of an ED. Minimum age 18. | BMI, EPSI, weekly binge and purge frequency, EDQLS, PHQ-9, STAI, health care utilization. | None. | Online training program (35 hours over 8 weeks), supervision every other week. Volunteer. | 2 years. |
| Age 14–45 years (M=27.9, SD=7.6 PM; M=31.0, SD=5.0 SS; M=27.1, SD=6.9 WL). White/Caucasian (75% PM, 94.4% SS, 91% WL). Private Insurance=55% (PM), 76% (SS), 88% (WL). | |||||||||||
| Rohrbach et al. (2022) | RCT | Randomized to online automated self-help program Featback, expert-patient support, Featback expert-patient support, or waitlist control. Participants able to seek help for ED but were not all necessarily in treatment. Online–Featback via website and email, expert-patient support via email or online chat. One-on-one. | 88 Featback (F), 87 Expert-Patient Support (EPS), 90 Featback +Expert-Patient Support (F + EPS). | 90 Waiting List (WL) | 8–20 min weekly for EPS and F + EPS | Whole sample–222/355 officially diagnosed with an ED, 91 no diagnosis but ED likely, 42 eating problems but ED unlikely (rates across groups similar). Female 93.2% F, 96.6% EPS, 98.9% F + EPS, 97.8% WL. Age M =28 SD=1.7 F, M=26.8, SD=9.4 EPS, M=28.3 SD=10.4 F + EPS, M=28.1 SD=12.4 WL. Dutch 88.6% F, 92% EPS, 88.9% F + EPS, 90% WL, Education Status Low=5.6% F, 13.7% EPS, 13.3% F + EPS, 20.5% WL, Middle=37.5% F, 39% EPS, 34.4% F + EPS, 39.3% WL, High=56.8% F, 47.1% EPS, 52.2% F + EPS, 40.4% WL. | N=5, required to be recovered, no other details reported. | EDE-Q, PHQ-4, GSES, SSL-12-I, RSES, IOS, questions re motivation, satisfaction, help seeking. | None. | 1 day training + intervention protocol provided, monthly supervision, paid. | Recovered, duration not reported. |
| Steinberg et al. (2022) | Case Series | Augmented FBT–peer mentor and family mentor included in treatment team. Peer mentor role model for recovery to inspire hope and motivation. Family mentor offered support, sharing of skills and strategies, and validation. Virtual. One-on-one. | 210 | N/A | Weekly, 50-minute sessions. Variable, up to 12 months. | AN 80%, ARFID 14%, BED 2%, BN 1%, OSFED 2%. Cisgender female 83%. Age M=16.1 (SD=2.87). White 71%, Payor: Health insurance=66%, private pay=3%, Other=27%. | Number of mentors and demographic information not reported. | Weight, EDE-QS, NIAS, PHQ-9, GAD-7, BAS, PVED, 1 question of treatment acceptability/satisfaction. | None. | 90-h training program, supervision (unknown frequency and with whom), certification. Not reported whether mentors paid or volunteered. | 2 years (for both peer mentors + family mentors [recovery criteria for their loved one]). |
Abbreviations: AAN, Atypical AN; AESED, Accommodation and Enabling Scale; AN, Anorexia Nervosa; AQoL-8D, Assessment of Quality of Life; BAS, Burden Assessment Scale; BED, Binge Eating Disorder; BDQ, Brief Disability Questionnaire; BMI, Body Mass Index; BN, Bulimia Nervosa; CASK, Caregiver Skills Scale; DASS, Depression Anxiety Stress Scales; DASS-21, Depression Anxiety Stress Scales short form; ECHO, Experience Caregivers Helping Others; ED, Eating Disorder; EDDS, Eating Disorder Diagnostic Scale; EDE-Q, Eating Disorder Examination Questionnaire; EDE-QS, Eating Disorder Examination Questionnaire Short Form; EDNOS, Eating Disorder Not Otherwise Specified; EDSIS, Eating Disorder Impact Scale; EDQLS, Eating Disorder Quality of Life Scale; EDQol, Eating Disorder Quality of Life Scale; EPSI, Eating Pathology Symptoms Inventory; FBT, Family-Based Treatment; FQ, Family Questionnaire; GAD-7, Generalized Anxiety Disorder Scale; GMeRQS, Global Mentoring Relationship Questionnaire Scale; GSES, General Self-Efficacy Scale; HADS, Hospital Anxiety and Depression Scale; IOS, Other in the Self Scale; K10, Kessler Psychological Distress Scale; MCQ, Match Characteristics Questionnaire; NIAS, Nine Item Avoidant/Restrictive Food Intake Disorder Screen; OSFED, Other Specified Feeding or Eating Disorder; PHQ-4, Patient Health Questionnaire 4-item version; PHQ-9, Patient Health Questionnaire; PVA, Parent Versus Anorexia Scale; PVED, Parent Versus Eating Disorder; RCT, Randomized Control Trial; RSES, Rosenberg Self-Esteem Scale; SES, Socioeconomic Status; SF-12, 12-item Short Form Survey; SSL-12-1, 12-item Social Support List; STAI, State–Trait Anxiety Inventory; TAU, Treatment as Usual; Tx, Treatment; WHO-QuoL, World Health Organization Quality of Life Questionnaire short version; WSAS, Work and Social Adjustment Scale.
Intervention Type
Brief details of each intervention in the included studies are summarized in Table 4, along with training and supervision provided and whether mentors were paid or volunteered. Two of the included studies (Ramjan et al., 2017; Ramjan et al., 2018) used Participatory Action Research, a qualitative research methodology which involves active participation from a population group of interest to capture their thoughts and feelings on a subject to encourage empowerment (Nicholls et al., 2016). Another three of the included studies described lived experience mentoring programs that had flexible content where mentors and mentees had a high degree of autonomy in specifying what topics to focus on (Beveridge et al., 2019; Perez et al., 2014; Rohrbach et al., 2022). Four of the included studies used structured programs including RecoveryMANTRA (Cardi et al., 2020), Experience Carers Helping Others (ECHO; Hibbs et al., 2015), ECHO combined with MANTRA, ECHOMANTRA (Adamson et al., 2019), and use of the “Eight Keys to Recovery from an Eating Disorder” self-help book by Costin and Schubert Grabb (2012) (Ranzenhofer et al., 2020). Two of the included studies were specifically focused on lived experience mentoring as an adjunct to FBT (Hellner et al., 2021; Steinberg et al., 2022). Most interventions utilized one-on-one mentoring, rather than group programs.
Mentee Outcomes
Participatory action research.
Ramjan et al. (2017) found significant improvements in hope overall from pre- to post-intervention and in several specific domains. There were no significant changes in their secondary outcomes of quality of life, eating disorder quality of life, and psychological distress (Ramjan et al., 2017). In a similar study, Ramjan et al. (2018) found no significant difference on any outcome measure between pre- and post-intervention on measures of quality of life, eating disorder quality of life, psychological distress, or the mentoring relationship. However, the program had good retention (only one mentoring pair not completing the program).
Flexible content programs.
Beveridge et al. (2019) found mentees to have significantly higher BMI, reduced eating disorder psychopathology (excluding the Weight Concern subscale), and improved mood, quality of life, and level of disability from pre- to post-intervention. However, eight of the 22 (36%) mentees who completed the program were re-admitted to inpatient or day program services (Beveridge et al., 2019). There was a high level of drop out and only three participants completed the total number of planned sessions (Beveridge et al., 2019).
In their comparison of matched and unmatched (non-randomized control group) mentees, Perez et al. (2014) found matched mentees to have significantly higher eating disorder-specific quality of life overall and on several subscales which were in turn positively and significantly correlated with the frequency of communication with mentors. Matched mentees missed significantly less outpatient treatment appointments compared to unmatched mentees (Perez et al., 2014). There were no significant differences in the motivation to recover, energy spent on recovery, or confidence in recovery and unfortunately eating disorder symptoms appear to have been measured at baseline only and thus were not included in the main results (Perez et al., 2014).
In a four-arm RCT, Rohrbach et al. (2022) found significant improvements in eating disorder psychopathology for all three active conditions compared to the waiting list control; however, there were no significant differences between the three groups. Thus, the impact of lived experience mentoring was not found to be beneficial over the automated self-help online program. There were also no significant differences between conditions on secondary outcomes of anxiety, depression, social support, and self-efficacy. However, program satisfaction was significantly higher for both conditions involving lived experience mentoring compared to control and automated self-help. There were, however, no significant differences between conditions in attrition or help-seeking behavior, indicating satisfaction did not translate into tangible outcomes. This is somewhat at odds with the general literature evaluating computerized interventions for mental health problems, where guidance significantly increases the average amount of intervention completion and the proportion of intervention completers (Musić et al., 2022).
Structured programs.
BMI was the primary outcome in Cardi et al.’s (2020) evaluation of RecoveryMANTRA; however, there were no significant differences between the intervention and control group at 6 weeks or at the 6- or 12-month follow-ups. There were also no significant differences found on secondary outcome measures of eating disorder psychopathology, depression, stress, work and social adjustment, cognitive and behavioral flexibility, and motivation. Therapeutic alliance was significantly higher for the RecoveryMANTRA group at the 6-week assessment, as was confidence in the ability to change; however, confidence was no longer significantly different between groups at both followups (Cardi et al., 2020). Within the RecoveryMANTRA group, there were no significant differences on any outcome based on the type of mentor assigned (postgraduate student, carer, or recovered peer); however, therapeutic alliance was slightly higher for those assigned to recovered peers (Albano et al., 2021).
Hibbs et al. (2015) found significantly greater quality of life and improved eating disorder psychopathology for patients in the ECHO group compared to the Treatment as Usual (TAU) group at the 6-month follow-up point but differences were no longer significant at 12-month follow-up. For carers, caregiver burden and expressed emotion were significantly lower in the ECHO group at the 6-month follow-up however differences at 12-month follow-up were described as negligible (Hibbs et al., 2015). At 24-month follow-up, it was concluded that there were improvements in some patient (ECHO group higher BMI and quality of life and lower eating disorder psychopathology and general distress) and carer outcomes (ECHO group lower carer distress, expressed emotion, accommodation and enabling, and carer burden) with low to moderate effect sizes however there were no significant differences between the ECHO and TAU groups (Magill et al., 2016). Coaching was delivered by both doctoral-level psychologists (n=5) and a mixture of people either recovered from an eating disorder or carer of someone recovered (n=15; Hibbs et al., 2015). Data were not analyzed separately for coach type and thus it is unknown if the use of lived experience mentors offered additional benefit.
Adamson et al.’s (2019) case study of ECHOMANTRA found large reductions in eating disorder symptoms; however, this was not significantly different from the comparison cohort, nor were there significant differences in any of the other measures. However, participants in the ECHOMANTRA cohort averaged slightly more weight increases per week (0.51 kg compared to 0.47 kg) and shorter admission length (mean 88 days compared to 112 days). For carers, there were small improvements in reducing carer burden, and increasing skills and efficacy at reducing AN behavior, but no change in reducing stress or accommodating and enabling behaviors (Adamson et al., 2019). Lived experience mentors only participated in a small part of the study, coleading the one-day carer workshop, and thus it is unclear whether results are attributable to lived experience involvement or not.
In their three-arm RCT, Ranzenhofer et al. (2020) found participants in the (lived experience) peer mentorship group had a significantly higher level of attendance, engagement, and acceptability and significantly greater decrease in body dissatisfaction (Ranzenhofer et al., 2020). There were no significant differences for other eating pathology subscales or BMI for the AN/Atypical AN subgroup (Ranzenhofer et al., 2020). Participants in the peer mentorship BN/BED subsample had significantly greater decreases in binge eating frequency compared to the waitlist and purging after non-binge eating instances compared to the social support group however no other comparisons were significant, including for purging following binge eating (Ranzenhofer et al., 2020). On secondary outcomes, peer mentorship participants had significantly greater reductions in anxiety compared to both groups and depression compared to the waitlist, while eating disorder quality of life, level of care, and the number of restriction days per week were not significantly different across groups (Ranzenhofer et al., 2020). Effect sizes were not provided however visual inspection of mean and standard deviations demonstrated small differences when results were significant (Ranzenhofer et al., 2020).
Augmented FBT.
In their case study of two families, Hellner et al. (2021) focused on weight gain as a primary outcome while eating disorder psychopathology, anxiety, depression, satisfaction ratings, and engagement (session attendance) were secondary outcomes. Results are limited given the small sample size and provision of only pre- and post-treatment raw scores. After 4 weeks of treatment, both patients gained weight and demonstrated reduced scores on a measure of eating disorder psychopathology (Hellner et al., 2021). Scores on measures of anxiety and depression were stable and patients and their families reported high satisfaction with the program and good engagement (Hellner et al., 2021). As there was no comparison group, it is unclear whether improvements in weight and eating disorder psychopathology are due to FBT only or are attributable to the augmented version provided.
Steinberg et al. (2022) reported that of those patients on a weight restoration plan, 80% achieved 95% of their target weight by the 16-week assessment point. Eating disorder psychopathology, depression and anxiety symptoms, and caregiver self-efficacy also significantly reduced by the 16-week assessment point while caregiver burden and patient or caregiver satisfaction scores did not significantly change over the course of treatment (Steinberg et al., 2022). Like Hellner et al. (2021), the lack of comparison group makes it difficult to attribute results to the augmented FBT compared to standard FBT. Steinberg et al.’s (2022) evaluation is also confounded by using online sessions and multiple team members, making it unclear which components are responsible for the outcomes.
Mentor Outcomes
Of the 11 included studies, quantitative data for mentors was collected in only three. None of the augmented FBT studies or the RCTs evaluated mentor outcomes. On measures of hope, quality of life, eating disorder-specific quality of life, and psychological distress/anxiety, Ramjan et al. (2017) and Ramjan et al. (2018) found no significant differences between pre- and post-measures for mentors. On a measure of mentoring relationship, mentors in both studies placed higher value on talking/sharing with their mentees however reported feeling less close to mentees (compared to population norms) than mentees felt to mentors (Ramjan et al., 2017, 2018). Mentors also felt their mentees needed support (Ramjan et al., 2017) and felt less confident in their abilities to handle issues at the end of the program (Ramjan et al., 2018) compared to population norms. Given the stability of scores on key outcome measures, it was concluded that the mentoring program used in both studies was safe for mentors participating (Ramjan et al., 2017, 2018). Beveridge et al. (2019) assessed mentors on eating disorder psychopathology, quality of life, mood, disability, and hospital admissions. A significant increase in eating disorder psychopathology was found from baseline to the end of the program, particularly on the Eating and Weight Concern subscales and the Global score of the EDE-Q; however, it is noted that absolute scores did not reach the pathological range (Beveridge et al., 2019). All other outcome measures remained stable. Only two of the included studies reported that mentors were paid for their role (Beveridge et al., 2019; Rohrbach et al., 2022). Hibbs et al. (2015), Perez et al. (2014) and Ranzenhofer et al. (2020) specify that mentors volunteered. All other included studies did not report on payment of mentors.
Study Quality Assessment
Study quality was rated out of nine for each of the 11 included studies using the specified sub-selection of 2010 CONSORT guidelines (see Table 2). The average number of “yes” responses was 6.45/9. Hibbs et al. (2015) and Rohrbach et al. (2022) had the highest quality rating of nine while one study had the lowest quality rating of just three “yes” responses (Perez et al., 2014). The four RCTs included in the review were additionally assessed using the Cochrane Collaboration's tool for assessing risk of bias (see Table 3). Cardi et al. (2020), Hibbs et al. (2015), Ranzenhofer et al. (2020), and Rohrbach et al. (2022) were concluded to have some risk present. “Low risk” was rated for most items however all had items that were either rated as “high risk” or “unclear risk”.
Discussion
The systematic review aimed to better understand the effectiveness of lived experience mentoring interventions in eating disorder treatment. Unlike previous reviews, this review focused exclusively on clinical samples where participants were engaged in eating disorder treatment, receiving adjunct treatment from peer mentors who were all recovered from an eating disorder, and included studies that presented quantitative findings. Research in this area remains limited and as such only 11 studies were included. Findings varied considerably however there is preliminary evidence that mentoring by recovered lived experience peers is a beneficial adjunct to participants engaged in eating disorder treatment. However, there were some adverse effects found that are important to consider in the development of future lived experience mentoring intervention models. Included studies varied considerably in quality and the RCTs had numerous areas of unclear risk. Thus, it is important that any conclusions are viewed cautiously through this lens.
Impact on Mentees
Several studies found positive benefits to mentees such as reduced eating disorder psychopathology, improved weight and BMI, higher hope and quality of life, and mood (Beveridge et al., 2019; Hellner et al., 2021; Hibbs et al., 2015; Perez et al., 2014; Ramjan et al., 2017; Steinberg et al., 2022). Adamson et al. (2019) also found their intervention reduced the average length of admission for inpatients. However, except Hibbs et al. (2015), these studies were all case series with only one having a control group that was not randomized (Perez et al., 2014). For Hibbs et al. (2015) significant differences between groups were lost at later follow-ups. The other three RCTs all found no significant differences for most comparisons between peer mentoring interventions and control conditions (Cardi et al., 2020; Ranzenhofer et al., 2020; Rohrbach et al., 2022).
Engagement and acceptance of lived experience mentoring.
Several studies found lived experience mentoring to be significantly associated with higher retention and engagement in sessions (Hellner et al., 2021; Ramjan et al., 2018; Ranzenhofer et al., 2020) and Perez et al. (2014) found mentees missed significantly less outpatient treatment appointments. However, Beveridge et al. (2019) found a high level of dropout, with only three participants completing the total number of intended sessions. Overall, it is encouraging to see that lived experience mentoring increased engagement and that retention was generally high across studies. Given eating disorder intervention studies typically report only modest rates of recovery (Byrne et al., 2017; Eisler et al., 2016; Linardon, 2018; Linardon & Wade, 2018; Lock et al., 2010; Solmi et al., 2021) and high dropout (Fassino et al., 2009), this is a promising avenue to explore in further research. Lived experience mentoring may be a potential mechanism for increasing engagement and instilling hope (Ramjan et al., 2017) and thus result in better treatment outcomes. This suggests that future studies with lived experience mentors need to pay attention to measuring relevant variables such as hope and examine whether this mediates treatment condition and treatment outcomes. For instance, Ramjan et al. (2017) used the psychometrically robust Domain Specific Hope Scale (Sympson, 1999). Alternatively, researchers may wish to use the shorter Trait Hope Scale (Snyder et al., 1991) or State Hope Scale (Snyder et al., 1996).
Mentor Outcomes
Mentor outcomes were only assessed in three studies, demonstrating a significant limitation in the current literature. Fortunately, mentors did not experience pathological increases in eating disorder psychopathology, quality of life, or mood (Beveridge et al., 2019; Ramjan et al., 2017, 2018). However, there were some significant increases in eating and weight concern in one study (Beveridge et al., 2019; scores remained below clinical cut-offs). It is therefore important that any program using mentors who are recovered from an eating disorder ensures good support, training, and regular supervision to prevent adverse outcomes and empower mentors to feel confident in addressing challenges. All included studies required mentors to be recovered which is an important consideration in the prevention of adverse outcomes. This requirement differs from other fields of mental health, and thus application of a “one size fits all model” of lived experience mentoring should be avoided, with models specific to eating disorders being developed and tested. See Musić et al. (2022) for further discussion in this area. Interestingly, Beveridge et al. (2019) had one of the lowest lengths of recovery requirements (1 year) while mentors in the Ramjan et al. (2017) and Ramjan et al. (2018) studies had been recovered for approximately 5 years. This suggests that a longer duration of recovery may be required to prevent adverse effects to mentors.
Training and supervision of mentors.
The level of training and supervision varied considerably across studies. Five studies provided a high level of support to mentors including an initial training program (often over several days) and follow-up supervision with an eating disorder clinician weekly, fortnightly, or monthly (Beveridge et al., 2019; Cardi et al., 2020; Hibbs et al., 2015; Ranzenhofer et al., 2020; Rohrbach et al., 2022). Other studies often did not clearly specify the level of support provided. For instance, Ramjan et al. (2018) provided mentors with initial training and follow-up supervision on an as needed basis while Ramjan et al. (2017) do not report if supervision was provided beyond initial training. Perez et al. (2014) describe that mentors received a package of materials and were assisted by an experienced mentor however no details are provided nor is it clear whether there was any oversight by eating disorder clinicians. In the augmented FBT studies, Hellner et al. (2021) do not report whether family and peer-lived experience mentors received any training or supervision. Steinberg et al. (2022) state that mentors received a comprehensive training program of 90 hours and that supervision was provided; however, the frequency of supervision or whom it is with is not reported. Given the potential for adverse effects, it is essential that future studies provide adequate training and regular supervision, in addition to monitoring mentor outcomes, to ensure mentors are safe and well-supported. Additionally, it is important to foster a safe environment, that acknowledges and addresses power imbalances between mentors and researchers and clinical staff, for mentors to speak up and encourage regular self-monitoring of mental health and wellbeing and help-seeking as required (Musić et al., 2022). The support given needs to be clearly documented in publications.
Payment of mentors.
For most included studies, it was not reported whether mentors volunteered or if they were paid for their involvement. In Australia, the National Health and Medical Research Council (NHMRC) released a “Statement on Consumer and Community Involvement in Health and Medical Research” (Australian Government, National Health and Medical Research Council, Consumers Health Forum of Australia, 2016) that specifies that consumers and community members involved in research should be appropriately reimbursed for their time and expertise and suggest researchers’ budget for this in addition to ways to support and engage consumers (such as training). There are inconsistencies across the field of peer work as to whether peers with lived experience are paid or not for their work and where there is pay it is often low and perceived as inequitable, contributing to further feelings of disempowerment among people with lived experience (Meagher, 2011; Moran et al., 2013). There is also differing perspectives over the role people with lived experience have and whether they should be remunerated. For instance, the National Eating Disorder Collaboration (NEDC) in Australia differentiate between peer mentoring and peer workers, where peer mentoring is a voluntary role as compared to being a peer or lived experience worker which requires conformity to organization standards and may encompass a wide variety of tasks (National Eating Disorders Collaboration, 2019). It is important the issue of payment is addressed in future research involving lived experience mentors to ensure those involved are appropriately compensated commensurate to the level of involvement.
Research Quality, Limitations, and Future Directions
This systematic review presents an updated insight into the literature on lived experience mentoring and eating disorder interventions, specifically in clinical samples using quantitative methods. Given evidence in the field is emerging, and the specific parameters defined in this review, the sample size of included studies (11) is thus very small. In assessing all included studies for quality using relevant items of the 2010 CONSORT guidelines extension to randomized pilot and feasibility trials (Eldridge et al., 2016), the average number of “yes” responses was somewhat low (6.45/9). A common issue was incomplete reporting of results. Only four studies presented results for each objective, including expressions of uncertainty and by randomized group where relevant, while all other studies either did this partially or not at all for the case study (Hellner et al., 2021). Reporting of sample characteristics was also a common issue and demographic data such as ethnicity and socioeconomic status was often omitted. This is an important oversight given the influence such variables may have on mentee/mentor matching and relationship. Furthermore, of the four RCTs included in the review, ratings on the Cochrane Collaboration's tool for assessing risk of bias (Higgins et al., 2011) varied considerably as many items across the RCTs were rated as either “high risk” or “unclear risk” (Cardi et al., 2020; Hibbs et al., 2015; Ranzenhofer et al., 2020; Rohrbach et al., 2022). Therefore, the risk of bias across the included RCTs is high.
Of the 11 included papers, only two focused on FBT and are stated as being preliminary investigations. Hellner et al.’s (2021) case study was focused on two families and the only quantitative data presented were raw scores at baseline and discharge, thus there is no examination of statistical or clinical significance. Furthermore, the intervention was only evaluated over 4 weeks. The recent study by Steinberg et al. (2022) is the largest to date; however, the lack of control group and confounding of study variables makes it difficult to confidently attribute findings to the incorporation of lived experience mentoring. Of the two studies that evaluated the carer intervention ECHO (Adamson et al., 2019; Hibbs et al., 2015), outcomes were not examined separately by coach or facilitator type (lived experience, carer, or professional) and it is unclear whether results are attributable to the inclusion of recovered lived experience mentors.
Other limitations include small sample size. In both the Ramjan et al. (2017) and Ramjan et al. (2018) studies, the intervention group consisted of 10 and 6 participants, respectively, and neither included a control group. Beveridge et al. (2019) also did not include a control group. A further difficulty was a high level of dropout. Only three participants completed all 13 sessions over the 6-month period as intended (Beveridge et al., 2019) and the lack of control group limits conclusions that can be made about the reasons for this. Clinical significance was also a reoccurring limitation. For instance, Ranzenhofer et al. (2020) found statistically significant differences between their peer group and the other two arms of their RCT, but actual differences appear small in nature. Critically, this study confounded the intervention with the status of the mentor (peer or not), so it is unknown if the intervention or who delivered it was helpful. Primary and secondary outcomes across the studies typically included measures of eating disorder symptoms, quality of life, and mood however Perez et al. (2014) appeared to only assess eating disorder symptoms at baseline, limiting conclusions on the effectiveness of their intervention. A further limitation in this area is the wide range of interventions, ranging from a single session, to several hours at a time. Thus, further research may seek to clarify the required dose to balance clinical effectiveness with participant burden.
Conclusions
This systematic review has sought to understand the effectiveness of lived experience mentoring, by people recovered from an eating disorder, with clinical samples currently engaged in eating disorder treatment. All included studies presented quantitative results. Findings were mixed but there continues to be preliminary evidence that there are some benefits to both mentors and mentees, particularly regarding instilling hope for recovery (Ramjan et al., 2017), although increased hope did not translate to clinically significant reductions in eating disorder symptoms. Several studies did not find any significant benefits, such as the RCT by Cardi et al. (2020), and an increase in eating disorder psychopathology for mentors was found by Beveridge et al. (2019). Study quality and risk of bias varied considerably. Thus, overall findings are consistent with earlier reviews in this area by Fogarty et al. (2016) and Lewis and Foye (2022) and lived experience mentoring in mental health more broadly (Fortuna et al., 2020; White et al., 2020).
It is recommended that further research in the area conforms to the 2010 CONSORT guidelines (Eldridge et al., 2016) and Cochrane Collaboration’s tool for assessing risk of bias (Higgins et al., 2011). It is important that studies evaluate mentor outcomes and provide adequate training, supervision, reimbursement, and support and that for both mentee and mentor outcomes, complete reporting of statistical analyses is performed. Given most research in this area is focused on individual mentoring programs, future research may also seek to explore whether there are differences between group and individual approaches. Such improvements and additions will help to further understand the role of peer mentoring in this field and whether it is beneficial or detrimental to mentees and mentors.
Footnotes
Action Editor: Kelly L. Klump.
AUTHOR CONTRIBUTIONS: Mia Liane Pellizzer: Conceptualization; data curation; formal analysis; investigation; methodology; project administration; writing–original draft. Tracey Wade: Conceptualization; methodology; supervision; writing–review and editing.
DATA AVAILABILITY STATEMENT: Data Availability Statement is not available.
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Published in print: Summer 2024
Published online: 15 July 2024
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