Providing online support for young people with mental health difficulties: challenges and opportunities explored

Authors


Ms Marianne Webb, Inspire Foundation, PO BOX 1790, Rozelle NSW 2039, Australia. Email: marianne@inspire.org.au

Abstract

Despite its growing popularity there is a paucity of information exploring the potential of the Internet to build a trusted community that helps reduce stigma, facilitates help-seeking and aids in the prevention or helps in the management of mental health difficulties for young people. Unsupervised online forums or chat rooms hold potential dangers for young people including the possibility of attracting adults who may take advantage of vulnerable adolescents. Contagion with members organizing suicide pacts, or describing suicidal or self-harming intentions and methods and young people ruminating about feeling depressed are also potential risks. This paper describes the development and conceptual underpinnings of the Reach Out! Online Community Forum, a moderated bulletin board, developed in consultation with, and facilitated by young people aged 16–25. The Forum, although facilitated by young people, is supported and monitored by trained moderators. Anecdotal evidence collected via unsolicited feedback from young people using the Forum suggests that it is a positive, unique and helpful online experience although little is known about the impact on stigma reduction and help seeking in the offline world. Given the proliferation of unsupervised forums and chat rooms there is a need for further research to determine the effectiveness or potential dangers of online forums in mental health prevention and early intervention work.

INTRODUCTION

Over the last decade the growth of the Internet has had a profound effect on society, creating new communities, redefining the practise of relationships and diversifying and enhancing social interactions.1,2 In Australia, 85% of 14- to 24-year olds use the Internet.3 Evidence suggests that young people feel empowered online and are provided a degree of anonymity which means they are more confident talking about sensitive or embarrassing issues.4–9

Given that one in five young people experience mental health difficulties and less than 30% seek professional help,10 the Internet has the potential to reduce the stigma associated with mental health problems and facilitate help seeking. A national survey of 7014 Internet users in the USA found that those with stigmatized illnesses, including depression and anxiety, were significantly more likely to have used the Internet to access health information and to communicate with professionals about their condition than those with non-stigmatized conditions.11 In an Australian study of 3998 participants, the authors concluded that web sites ‘that maintain anonymity may be preferred by those who choose to or find themselves dealing with mental illness alone’, suggesting that web sites may be an important medium for engaging with people experiencing mental health difficulties or at risk of mental health problems but who are not yet seeking face to face professional help.7

The impact of the Internet and the role it plays in young people's everyday lives has been fiercely debated, particularly in the popular press. A literature metasearch was conducted using Medline, PsychArticles, PubMed and PsychInfo databases. Search terms included ‘young people, adolescence, teenagers’, ‘suicide, self-harm’, ‘depression, anxiety’, ‘online support, Internet, www’ and ‘mental health’. Over 500 articles were found, and key research and major themes are referred to in this article, although the literature predominantly consists of case studies or current opinions rather than empirical studies.

Early research suggested that increased Internet use could diminish social involvement, because it reduced the time young people spent with others offline.12,13 However, the Internet has also been shown to increase community participation14,15 and support social networks and existing social connections both on and offline.16,17 Young people indicate there are many direct links between their activities online, including the information they access, and their daily lives, viewing this as a form of ‘social capital’.2,17

The literature examining the relative psychosocial benefits and risks to individuals is also contradictory. Some studies show a correlation between Internet use and Internet addiction, which manifests itself as antisocial behaviour and may be associated with poorer social skills, lower self-esteem and confidence.18–21 However, Australian studies conducted in adult populations suggest that the Internet can play a significant role in increasing mental health literacy and reducing stigma associated with help-seeking.22–24 Griffiths et al.24 in a randomized control trial of 525 Australians found that a web-based cognitive–behavioural intervention and a web-based depression literacy programme resulted in significant reductions in stigmatizing attitudes towards depression among people with high levels of depressive symptoms.

Most of the research examining the use of the Internet by young people has come from the USA, highlighting the need for equivalent Australian data. Of 1209 young Americans aged 15–24, 75% reported accessing health information online or through search engines and sites.1 A study of 2054 adolescents from three junior high schools and one senior school in the USA investigated the use and impact of a dedicated health information web site for adolescents. Use of the web site was found to be ‘positively associated with visits to school health centres, guidance counsellors and referrals to health professionals’.25

Research on online support groups suggests that level of moderation plays an important role in building a safe and positive community. In online groups that have low to medium levels of moderation, higher levels of self-harm, depressive symptoms, contagion and normalizing self harming behaviour were evident in young people.26 Conversely, research of moderated online support groups indicates that they can provide essential social support for otherwise isolated adolescents,26–28 offer the ‘same assistance strategies as face-to-face groups’29 and can provide ‘a supportive conversation or a referral to appropriate help resources’.30,31 Using a web-based questionnaire, a study of 102 members from a moderated online self-harm discussion group evaluated how self-harm was influenced by membership. It found that the majority of respondents reduced the frequency and severity of their self-harming behaviour as a consequence of group membership.28

This paper describes the Reach Out! Online Community Forum, an asynchronous bulletin board. The Forum model aims to mitigate against the risks and maximize the benefits of using an online environment to provide support for young people experiencing mental health difficulties.

THE REACH OUT! ONLINE COMMUNITY FORUM

Reach Out! (http://www.reachout.com.au) is a unique Australian Internet-based mental health service for young people aged 16–25. With over 6.5 million individual visits to Reach Out! since 1998, and more than 230 000 individual visits each month, Reach Out! has established itself as a popular source of mental health advice and support for young Australians.32,33

The Online Community Forum is one element of the Reach Out! service and aims to provide a place where young people can safely and anonymously explore their experiences of mental health difficulties and share strategies and resources for addressing these. Young people define and direct discussions, emphasizing positive strategies for information and help-seeking with support from Reach Out! staff who draw on the advice of a clinical advisory board. Although the Forum is always viewable, members can only post comments between 6 p.m. and 10 p.m. AEST (Australian Eastern Standard Time) every Monday and Thursday. Moderation and supervision is provided during these hours and a trained staff member is on call. The Forum is underpinned by youth involvement and aims to increase mental health literacy, reduce stigma and promote help-seeking.

The evidence base regarding online forums is sparse, and therefore, the conceptual framework underpinning the model draws on evidence from the offline world including principles of Cognitive Behavioural Therapy and positive psychology.34 In addition, an analysis of six different online communities was conducted to explore two specific questions:

  • 1Is it possible to build a strong online community with a high level of youth participation?
  • 2Is it possible to minimize harm and maximize safety for community members?

The online communities were:

Operationalizing the Reach Out! Online Community Forum

Three key elements underpin the Forum: (i) explicit and reinforced guidelines and terms of use; (ii) structured discussion threads; and (iii) trained peer supervisors and moderators. Each element is explained in more detail below.

Guidelines

Guidelines were developed for the safety of all members and include policies about being negative, sharing personal information and detailing suicidal or self-harming behaviour. When members join they must read and agree to abide by the Terms of Use which state clearly that the Forum is a peer support group, not a counselling service. The guidelines direct anyone who is suicidal or at risk of self-harming to Lifeline or Kidshelpline, both free national telephone counselling services, and to the relevant fact sheets on Reach Out!. Links to the guidelines are positioned prominently; in the page headers, pinned to the top of issue streams, and in moderators' signatures which are automatically added to their posts. Behaviour is monitored and the guidelines are upheld by peer moderators and supervisors.

I really like that the rules are enforced here and that there are moderators to keep discussions on topic.

Male, 19

Facilitated discussions

Reflecting the mental health content on Reach Out!, the discussion streams initially included six sections covering broad topics: (i) Inspire; (ii) School, university and work; (iii) Relationships, friends and family; (iv) Health; (v) Chatterbox; and (vi) Feedback.

When it became evident that members were frequently posting about mental health difficulties two new streams were added; Feeling Crap and Feeling Great. The latter was suggested by a member, who felt the Forum needed a stream where members could post about feeling positive without alienating those who were feeling down: to ‘juxtapose the feeling crap section and therefore create a happy equilibrium’ (male, 18). This member lobbied online and initiated a discussion about whether such a stream should be added. The poll he posted resulted in 85% of members in favour of the section.

People obviously feel comfortable sharing their hard times as well as their good times in the anonymity of the forums. It's great that people are sharing their victories and not just bad stuff.

Female, 21

Given the success of the ‘Feeling Great’ section, further positive discussion threads were introduced. These threads suggest activities to challenge members' negative thoughts and the stigma around help-seeking. Posts are pinned to the top of the relevant issue stream, and members have since started their own similar threads, such as strategies for building and using a support network, and managing negative thoughts.

how bout u beat that male pride and get some help! . . . Hmm . . . mental pictures are hard to deal with, especially when they just come at you, but there are distractions e.g. putting the picture in a box, or actually drawing the picture and ripping it up gives it a sense of leaving you . . . 

Female, 18

Role of supervisors and moderators

Developed in consultation with mental health professionals and young people, the roles of supervisor and moderator are to promote a safe and supportive environment. Supervisors are experienced Reach Out! staff who manage the overall direction and safety of the Forum and provide support and training to moderators. Moderators read and edit posts, facilitate discussion and ensure members abide by the Guidelines (Table 1).

Table 1.  Responsibilities of the ROOCF supervisor and moderator
SupervisorModerator
  1. ROOCF, Reach Out! Online Community Forum.

• Ensure the safety of a member if they are at risk of harming themselves or others.
• Provide on-call support for moderators, including debriefing a moderator after incidents occur.
• Ban or suspend members who continue to use forums inappropriately, as outlined in the Terms of Use.
• Provide feedback and suggestions to moderators during monthly debriefs or as required.
• Manage the training of new moderators.
• Oversee systems and processes for developing positive forum culture.
• Use helper and support skills to foster a safe, healthy, positive atmosphere and discussion where young people can be supported, help themselves and help others.
• Read all posts and respond to anything inappropriate, referral requests or to a post that has been on the board for 24 h without a response (or that has not been responded to adequately).
• Complete one moderating shift on the Reach Out! public forums per fortnight for a 6-month period. If moderators cannot make a shift, they must notify the Reach Out! Web site Manager at least 24 h before their shift and/or organize to swap with another moderator.
• Report any crisis posts immediately (ie. suicide in progress or any case of abuse) to the supervisor.
• Contact the supervisor if uncertain about how to respond to a post, in need of support or debrief.
• Set clear boundaries between themselves and members by using two different member names – one for when they are moderating and another when they are a general member on the site.
• Take part in a monthly debrief with the Reach Out! Web site Manager.

Moderators are Reach Out! Youth Ambassadors, aged 18 or over who have attended at least one of the annual Youth Ambassador skills workshops.35 They participate in a 2-day scenario-based training session. The Supervisors support the moderators in their role and conduct monthly debriefs. Moderators are also encouraged to share experiences and concerns with each other via a separate online forum. Moderator posts are designed to affirm and validate members' experiences, encourage the use of evidence-based information resources and promote help-seeking. This is achieved by consistently encouraging members to access supports, such as a mental health professional or telephone counselling, as well as suggesting alternative and constructive ways of managing a problem. As some members access the Forum frequently moderators also remind users that it is not a replacement for counselling.

I am really proud and inspired by the positive steps people around here have been taking in seeking help lately . . . those people who have been seeing their GP's and counsellors, etc. It feels like we are really creating a community here where people are inspired to seek help!

Moderator, 20

Moderators are trained to recognize and respond to posts that could be harmful, such as posts that describe methods or intentions to self-harm or suicide, or may in any way be perceived as triggering, promoting or encouraging self-harm. These are deleted, as is medical advice and personal information. Any post that states an intention or plan to suicide is taken seriously. Moderators contact the supervisor immediately, who emails the member stressing the need to keep safe, directing them to relevant Reach Out! fact sheets and strongly encouraging them to access supports, such as a mental health professional or telephone counselling. In order to further mitigate risk, protect member confidentiality and dissuade potential online predators, private messaging, a common function in most forums, is disabled.

Future directions

The Australian Government recently committed significant resources to improving the nation's mental health, specifically focusing on improving services by increasing the number of professionals trained to treat and manage mental health difficulties. Given that many mental health problems have their onset in adolescence a major focus has been a new youth mental health initiative (http://www.headspace.org.au). The full potential of this initiative will only be realized if alongside systemic change we see a reduction in the stigma surrounding mental health difficulties, an increase in help-seeking, an improvement in compliance to treatment and continuity of care for young people. This shift can only occur if we move beyond the confines of traditional clinical care and recognize the potential of reaching and interacting with young people through the Internet. This logic theoretically fits with the clinical staging model framework (Stage 0 and 1a) suggesting that large populations of ‘at risk’ young people could be provided with evidence-based literature to improve mental health literacy, brief cognitive skills training, or that screening and funnelling to appropriate mental health services could occur on line.36

The Reach Out! Online Community Forum could potentially be used by mental health professionals alongside traditional counselling to improve communication and enhance treatment. In addition, the Forum could be used in a collaborative care model with primary health care providers (specifically general practitioners, school counsellors and nurses). This would reduce the demand placed on clinicians, freeing them to focus on those young people with more severe disorders. Specific initiatives may include:

  • • A section dedicated to a featured mental health professional that explains their role and provides young people with an opportunity to post questions that can then be answered online by the professional.
  • • An increase in positive discussion threads to include more exercises based on Cognitive Behavioural Therapy (optimistic thinking, reframing, diary keeping) which could be utilized in enhancing compliance to clinical intervention.
  • • The introduction of regular guests to help reduce the stigma associated with getting help. These guests may be mental health professionals or young people, and include celebrities answering members' questions about tough times, goals and inspirations.

Wolak et al. emphasize the need for further research to extend our understanding of the nature and impact of young people's online relationships, particularly for those experiencing mental health difficulties.37 While anecdotal evidence from young people and mental health professionals suggests that the Reach Out! Online Community Forum is a positive and helpful experience for young people, there is a need for further research to determine its effectiveness and to ensure that use of the forum is not detrimental to young people's mental health. Longitudinal tracking of forum users, with surveys and in depth interviews, will explore user responses to standard mental health measures over time. In addition, content analysis of forum discussions will determine how online interactions contribute to improvement in mental health literacy, stigma reduction and an increase in help-seeking behaviour.

ACKNOWLEDGEMENTS

The authors acknowledge the young people, the mental health professionals and the Inspire team who have given their time to help create the Reach Out! website. Reach Out! is a programme of the Inspire Foundation (http://www.inspire.org.au), a national charity that uses the Internet and related technologies to improve the mental health of young people.

Ancillary