Help-seeking barriers and online peer-to-peer support for eating disorders

Abstract Many individuals with eating disorder symptoms do not seek or receive appropriate help. Understanding the barriers to low help-seeking rates and identifying digital approaches that facilitate help-seeking may improve outcomes. However, little is known about these factors and approaches, especially among emerging adults, who are a particularly vulnerable population for eating disorders. This thesis includes two systematic reviews which examined perceived help-seeking barriers and the effectiveness of online peer-to-peer support for eating disorders, respectively. These served as a framework for three empirical studies which aimed to address identified gaps in the help-seeking literature for eating disorders among emerging adults. The empirical studies were: (1) a large-scale cross-sectional study of perceived help-seeking barriers, (2) a case study of the effects of an Internet-based prevention program on help-seeking barriers and behaviour, and (3) a randomised controlled trial of the effectiveness of online peer support in an indicated Internet-based prevention program. The first systematic review identified a broad range of perceived barriers towards seeking help for eating disorders, of which stigma, shame, denial, and failure to perceive the severity of the illness were the most commonly investigated. However, the review identified a need for more rigorous studies examining younger people and a lack of a multi-factorial assessment tool for measuring help-seeking barriers. The cross-sectional study employed a newly developed, purpose-designed measure (Barriers Towards Seeking Help for Eating Disorders Questionnaire; BATSH-ED) and found that concern for others and self-sufficiency were the most commonly endorsed barriers among emerging adults, suggesting that barriers may manifest differently as a function of age and eating disorder symptomatology. It has been suggested that online peer support may reduce help-seeking barriers. However, the second systematic review identified a lack of studies investigating the role of online peer support for eating disorders, with no study investigating its effect on help-seeking. The case report in this thesis suggested that synchronous peer support in an Internet-based program (ProYouth) may assist in reducing help-seeking barriers such as stigma and facilitate more intensive help-seeking. To address the lack of high-quality studies of the effects of online peer support, we undertook a randomised controlled indicated prevention trial of an adapted version of ProYouth (ProYouth OZ). The trial was designed to compare the effects of ProYouth OZ with and without peer support on eating disorder symptoms, help-seeking barriers, intentions, and behaviour among emerging adults with eating disorder symptoms in Australia. Despite some promising indications, challenges with recruitment resulted in an underpowered study which precluded reliable conclusions. Instead, the study offered novel insight into the challenges of reaching and engaging emerging adults who experience symptoms of an eating disorder without meeting diagnostic criteria. We concluded that there is a need for high quality trials regarding the impact of peer-to-peer support on help-seeking for eating disorder symptoms, and that the design and implementation of these trials should be informed by research that has systematically investigated the most effective methods for reaching, identifying, and engaging emerging adults at risk for eating disorders in Internet-based interventions. In addition to informing the development and tailoring of online interventions, there may be value in educating the community as well as health professionals on the barriers to help-seeking among individuals with eating disorder symptoms, enabling them to identify and address these barriers early

Development of the Uni Virtual Clinic: an online programme for improving the mental health of university students

There is growing recognition of the importance of addressing the mental health needs of young people attending university. Anonymous, scalable, and evidence-based online interventions can help to reduce burden on university services and increase access to care for marginalised or disconnected students. This paper reports the participatory design methods used to develop the Uni Virtual Clinic (UVC), a comprehensive online programme that was designed to prevent and treat mental health problems and related issues in university students. Data evaluating the participatory design process is also presented. The potential for the implementation of the UVC within university-based counselling services is strong, and has potential to reduce the prevalence of mental disorders in a high-risk group of young people.This project was resourced by the Young and Well CRC (youngandwellcrc.org.au). The Young and Well CRC was established under the Australian Government’s Cooperative Research Centres Programme

Online Peer-to-Peer Support for Young People With Mental Health Problems: A Systematic Review

Adolescence and early adulthood are critical periods for the development of mental disorders. Online peer-to-peer communication is popular among young people and may improve mental health by providing social support. Previous systematic reviews have targeted Internet support groups for adults with mental health problems, including depression. However, there have been no systematic reviews examining the effectiveness of online peer-to-peer support in improving the mental health of adolescents and young adults. This systematic review identified an overall lack of high-quality studies examining online peer-to-peer support for young people. Given that peer support is frequently used as an adjunct to Internet interventions for a variety of mental health conditions, there is an urgent need to determine the effectiveness of peer support alone as an active intervention

Enhancing help-seeking behavior in individuals with eating disorder symptoms via Internet: A case report

Internet-based programs may help to reduce barriers to help-seeking and to refer individuals in need to appropriate levels of care. This case report of an 18-year-old female who participated in the Internet-based program ProYouth for prevention and early intervention of eating disorders (ED) demonstrates how program utilization could contribute to enhancing help-seeking behavior. Data on user characteristics, ED related risk factors and help-seeking were assessed by online questionnaires. Usage data of the program were extracted from server logs. Although promising, findings from this case study cannot be generalized to the entirety of users. Systematic research on this topic is required.The ProYouth initiative was funded by the European Union, in the framework of the Health Programme (PROYOUTH 20101209; 〈www.pro‐youth.eu〉)

From Help-Seekers to Influential Users: A Systematic Review of Participation Styles in Online Health Communities

Background: Understanding how people participate in and contribute to online health communities (OHCs) is useful knowledge in multiple domains. It is helpful for community managers in developing strategies for building community, for organizations in disseminating information about health interventions, and for researchers in understanding the social dynamics of peer support. Objective: We sought to determine if any patterns were apparent in the nature of user participation across online health communities. Methods: The current study involved a systematic review of all studies that have investigated the nature of participation in an online health community and have provided a quantifiable method for categorizing a person based on their participation style. A systematic search yielded 20 papers. Results: Participatory styles were classified as either multidimensional (based on multiple metrics) or unidimensional (based on one metric). With respect to the multidimensional category, a total of 41 different participation styles were identified ranging from Influential Users who were leaders on the board to Topic-Focused Responders who focused on a specific topic and tended to respond to rather than initiate posts. However, there was little overlap in participation styles identified both across OHCs for different health conditions and within OHCs for specific health conditions. Five of the 41 styles emerged in more than one study (Hubs, Authorities, Facilitators, Prime Givers, and Discussants), but the remainder were reported in only one study. The focus of the unidimensional studies was on level of engagement and particularly on high-engaged users. Eight different metrics were used to evaluate level of engagement with the greatest focus on frequency of posts. Conclusions: With the exception of high-engaged users based on high post frequency, the current review found little evidence for consistent participatory styles across different health communities. However, this area of research is in its infancy, with most of the studies included in the review being published in the last 2 years. Nevertheless, the review delivers a nomenclature for OHC participation styles and metrics and discusses important methodological issues that will provide a basis for future comparative research in the area. Further studies are required to systematically investigate a range of participatory styles, to investigate their association with different types of online health communities and to determine the contribution of different participatory styles within and across online health communities

Perceived Barriers and Facilitators Towards Help-seeking for Eating Disorders: A Systematic Review

OBJECTIVE: To systematically review the literature on perceived barriers and facilitators of help-seeking for eating disorders. METHOD: Three databases (PubMed, PsychInfo, Cochrane) were searched using keywords and Medical Subject Headings (MeSH) terms. Retrieved abstracts (N = 3493) were double screened and relevant papers (n = 13) were double coded. Qualitative and quantitative studies were included if they reported perceived barriers and facilitators towards seeking help for eating disorders. Barriers and facilitators were extracted from the included papers and coded under themes. The most prominent barriers and facilitators were determined by the number of studies reporting each theme. RESULTS: Eight qualitative, three quantitative, and two mixed-methods studies met the inclusion criteria for the current review. The most prominent perceived barriers to help-seeking were stigma and shame, denial of and failure to perceive the severity of the illness, practical barriers (e.g., cost of treatment), low motivation to change, negative attitudes towards seeking help, lack of encouragement from others to seek help and lack of knowledge about help resources. Facilitators of help-seeking were reported in six studies, with the most prominent themes identified as the presence of other mental health problems or emotional distress, and concerns about health. DISCUSSION: Programs targeting prevention and early intervention for eating disorders should focus on reducing stigma and shame, educating individuals about the severity of eating disorders, and increasing knowledge around help-seeking pathways for eating disorders.This project was conducted within the AustraliaGermany Joint Research Cooperation Scheme. The project was resourced by the Young and Well CRC. The Young and Well CRC is established under the Australian Government’s Cooperative Research Centres Progra

Comparison of clinicians' and researchers' ratings of proposed diagnostic criteria for compulsive buying-shopping disorder within a Delphi study.

Diagnostic criteria for compulsive buying shopping disorder were recently proposed based on a Delphi consensus study including 138 experts from 35 countries. The present study represents a secondary analysis of those data. To provide further support for the validity of expert responses in the Delphi study, the sample was retrospectively divided into clinician and researcher subgroups. The two groups were compared with respect to demographic variables, their importance ratings of clinical features, possible diagnostic criteria, differential diagnoses and specifiers of compulsive buying shopping disorder. Researchers reported less years of treating/assessing individuals with compulsive buying shopping disorder and stated that they have treated/assessed individuals with compulsive buying shopping disorder less often in the last 12 months than clinicians. Responses from the two groups concerning the importance ratings of possible diagnostic criteria of compulsive buying shopping disorder converged with only few minor differences with small to moderate group effects. However, even for those criteria, the consensus threshold (≥75% agreement with the proposed criterion) was reached in both groups. The lack of differences in the responses of the two groups indicates good validity for the proposed diagnostic criteria. Future research should address the clinical applicability and diagnostic validity of the criteria

The unmet treatment need for eating disorders: What has changed in more than 10 years? An updated systematic review and meta-analysis

A minority of people with eating disorders seek and receive appropriate professional help. This review assessed the proportion of individuals with eating disorders who had sought help or received treatment, as an update to the Hart et al. (2011) review conducted more than a decade ago. Three databases were searched for studies that: 1) included a community sample of help-seekers and non-help seekers, 2) used a standardized eating disorder screening instrument, and 3) assessed the percentage of participants who had sought help specifically for eating disorder concerns. Of 599 articles, 21 studies met inclusion criteria, representing 37,423 participants. The pooled proportion reporting help-seeking from any source was 30% (95% CI = 22%-38%). The pooled proportion reporting formal treatment seeking from appropriate health professionals specifically for eating disorder concerns was 31% (95% CI = 22%-39%). These rates suggest little to no improvement in the unmet need for treatment since 1989 with reviewed studies continuing to focus on white adult women. Help-seeking rates among other populations remain unclear and there is and an urgent need to understand reasons for overall low help-seeking rates. Better visibility of health professionals qualified to provide eating disorder treatment could help reduce the substantial treatment gap