A critical analysis of online social support for young people experiencing chronic pain

ABSTRACT

Objective

Chronic pain is a prevalent and costly public health problem for young people. The associated physical, psychosocial, and psychological burdens, including higher degrees of social isolation, are well documented. Pathways to receive and offer support can be found with online social support (OSS). Research indicates OSS features impact the frequency of use, reach, safety and overall experience for the user.

Methods

We conducted a rigorous internet search to identify and appraise the available English-language OSS worldwide for young people with chronic pain. Through Google, two complementary search strategies were used to identify the available OSS. The general characteristics and features of the available OSS were then extracted.

Results

The search strategies produced a total yield of 1319 websites of which 11 OSS websites were identified as meeting inclusion criteria. Characteristics of OSS varied significantly, such as moderation, site access requirements and safeguarding features. Only two of the OSS sites, both being affiliated with a hospital, offered all of the features suggested by the literature to mitigate the potential for harm.

Conclusions

Despite the prevalence of chronic pain in young people and clear benefits to utilise support online, there is a paucity of available high-quality OSS available for access and support. When young people do go online with the hope to receive support, a safe space to share experiences may not be easily found. It appears an important opportunity is being missed for this group to foster social connections that may be unavailable offline.

KEY POINTS

What is already known about this topic:

1. Young people with chronic pain experience higher degrees of social isolation and are more likely to have difficulties relating to peers.

2. Given the accessibility, ubiquitous usage and the unmatched technology literacy of today’s youth, young people with chronic pain represent a unique population who would appear to benefit from online social support (OSS).

3. Despite the prevalence of chronic pain in young people and clear benefits of OSS for this population, there is a paucity of research into the available OSS or associated outcome measures.

What this topic adds:

1. This article identifies the available English-language OSS worldwide for young people experiencing chronic pain. A rigorous internet search revealed only 11 OSS websites for young people with chronic pain worldwide.

2. The “gold standard” website features explored in this paper may provide a framework to facilitate the development of improved OSS for young people with chronic pain.

3. Given the prevalence, emotional and social and burden associated with chronic pain in young people, we posit the need for accessible and safe spaces to share experiences is timely.

KEYWORDS:

• Chronic pain
• online
• social support
• young people

Introduction

Chronic pain is a common experience for young people, defined in this study as those aged up to 25 years (McGorry et al., 2013). Chronic pain is linked with significant physical, psychosocial, financial, and psychological burdens for young people and their families (Palermo et al., 2014). The management of chronic pain for young people is complex and challenging, and differs from the management of pain in adults for many developmental, psychological, and social reasons (World Health Organization [WHO], 2020). Young people with chronic pain experience higher degrees of social isolation and are more likely to have difficulties relating to peers (Forgeron et al., 2013). Clinical guidelines for the management of chronic pain have recommended children and their families to be cared for from a biopsychosocial perspective, with recommendations to integrate social support to alleviate distress (WHO, 2020).

It is widely recognised that social support improves physical and psychological health outcomes through sharing concerns, experiences and offering guidance to navigate stress (Thoits, 2011). Advances in technology have provided new pathways to receive and offer support. Social support found online can replace or extend traditional social support networks (Chung, 2013; Feng et al., 2013; Wright, 2016). The internet is frequently used (eSafety Commissioner, 2021), and with nearly universal access, low cost and the removal of geographical barriers, has facilitated the development of online social support (OSS). Emerging evidence suggests that by engaging with OSS, young people with pain can explore their identity and create, maintain, and strengthen social interactions in ways that may be unavailable offline (Forgeron et al., 2019; Kohut et al., 2016; Stinson et al., 2014). A qualitative analysis exploring adolescents’ use of the internet for pain advice showed the internet is seen by this group as an anonymous space to seek information, which may be embarrassing to speak about with friends or family (Henderson et al., 2014). OSS can allow young people living with chronic pain to foster connection to otherwise inaccessible individuals with a shared experience, worldwide.

Research investigating available OSS for young people with chronic pain and its associated outcomes is limited. Henderson et al. (2012) explored websites offering adolescents help with headache, abdomen pain and dysmenorrhoea. Of the 63 websites included in the review, only 7 of these websites offered an interactive posting facility in which young people could connect. Many OSS websites are open, allowing individuals to disclose personal and confidential experiences, which lends opportunity for unqualified and potentially unhelpful advice to be disseminated and potential bullying to occur (Forgeron et al., 2019).

To mitigate the potential for harm and promote a thriving OSS environment, many online groups rely on a variety of website features and structures. For example, OSS communities can operate on synchronous schedules, with messages exchanged in real time in the form of chat rooms or virtual meetings, or on asynchronous schedules with messages exchanged over time, and does not require users to be online at the same time, such as forums and message or discussion boards (Fox et al., 2007). Compared to synchronous platforms, asynchronous platforms may increase perceptions of credibility and connection but also reduce opinions of usefulness and influence (Ng & Detenber, 2005; Nowak et al., 2005).

During the COVID-19 pandemic, when video teleconferencing platforms (e.g., Zoom or Skype) increased, many synchronous OSS platforms enriched interactions via chat rooms and virtual meetings (Borup et al., 2012) and may even be preferred (McCabe et al., 2015). El Morr et al.’s (2020) qualitative research exploring university students’ preferences of online communities suggest safety protocols by keeping video cameras and microphones off by default. Yet, young people with chronic pain may seek this connection with peers and be at greater risk. Guidelines promoting autonomy should therefore be afforded to the young person (WHO, 2020).

Moderation is a key feature of reducing OSS safety risk (Y. X. Ho et al., 2014; Lindsay et al., 2009; Wise et al., 2006). A clearly accessible “report abuse” button to contact moderators responsible for corrective action is recommended by El Morr et al. (2020). It is also suggested that users provide contact details to moderators so that a young person, or their caregiver, can seek information or report any concerns (Henderson & Eccleston, 2015). In online settings, moderators can also positively influence social interactions by providing structure to unproductive or maladaptive health behaviours (Y. X. Ho et al., 2014) and though moderation can be valuable in many forms, such as with volunteers or OSS users themselves (Wise et al., 2006), the presence of a medical expert or professional as a moderator can improve information quality control and can lead to improved health outcomes (Bakke, 2019; Henderson et al., 2012).

Whilst OSS can have open access, participant OSS is further safeguarded with locked access via membership or password access to the site or group. However, studies have shown the majority of site visitors do not post or interact with OSS but simply read posts, also known as lurking (Preece & Maloney-Krichmar, 2005; Sun et al., 2014). Open asynchronous OSS allows the audience to extend beyond the forum’s intended audience and provides an opportunity for lurking to occur with both associated positives and negatives (Zimmermann & Jucks, 2018). A drawback of open OSS may involve the young person reading distressing messages, which may exacerbate their negative experience of chronic pain. Furthermore, “lurking” does not directly foster social connection, and those with problems with peers in offline lives may be particularly vulnerable to the negative effects of “lurking” (Underwood & Ehrenreich, 2017). Contrastingly, the ability to passively view information rather than contribute may allow a young person to feel validated and have pain normalised. In a qualitative analysis exploring why young people with chronic pain use the internet, the perceived embarrassing nature of questions was identified to be their primary motivator, as the internet was considered an anonymous space (Henderson et al., 2014). The option for young people to remain anonymous may encourage disclosure without the risk of stigmatisation and promote equality between users of differing status (Feng et al., 2013). Moreover, for this population, anonymity is suggested as an essential component to protect privacy (Becker, 2013; El Morr et al., 2020).

Recommendations stipulate OSS developers to be cognizant of the needs of their users in the development, preservation and refinement of OSS groups and the associated policies, rules and guidelines (Jaeger & Xie, 2009). Group Agreements, Community Guidelines and Frequently Asked Questions (FAQs) files are utilised to orient new users and for existing users’ reference. For this population, community guidelines for both the young person and their caregiver are recommended to establish a set of rules to ensure an expected standard of behaviour to create a safe environment for users to interact. Furthermore, as clinical guidelines for paediatric chronic pain have recommended, families and caregivers must receive timely and accurate information as clear communication is essential to good clinical practice (WHO, 2020).

Whilst OSS is typically free of cost, users of OSS may be required to pay a membership fee to access and contribute to the forum or chat room. The financial burden associated with chronic pain for both the young person and their family is clearly established (Groenewald et al., 2014; I. K. Ho et al., 2008). This may include numerous healthcare, outpatient and specialist visits, and substantial indirect financial burden (e.g., attending appointments and work absenteeism) (I. K. Ho et al., 2008). Associated costs may pose additional barriers to the accessibility and availability of OSS for young people with chronic pain.

The current study aims to fill a gap in the literature by identifying the available English-language OSS worldwide for young people experiencing chronic pain. Evaluating the features of OSS is important, as these factors may impact the frequency of use, understanding, reach, safety and overall experience and impact for the young people using them. This study aims to critically appraise the features of the currently available OSS as of 2021, to enable the development of better online support, specific to young people experiencing chronic pain.

Method

Low-risk research ethics approval was granted from the University of Adelaide School of Psychology Human Research Ethics Committee (#21/47). Only open and publicly accessible online social support sites (OSS) were included, and user data or content of user posts were not considered for the purpose of this study, which involved two phases: (a) identifying the available English-language OSS for young people experiencing chronic pain, and (b) identifying and appraising the website features of the available OSS.

Included websites

Websites were only included if website names, home pages, welcome pages or descriptions explicitly targeted young people experiencing chronic pain. OSS websites were included if they contained communication in the form of a message board, forum, chat room or virtual meeting (video). OSS forum websites were included if they contained evidence of a chronic pain specific related forum threads created by the site owner or the young person themselves. Furthermore, they were included only if they contained content in English and were publicly available. Following Kaicker et al.’s (2010) methodology, websites that were considered “for-profit” were included only if they offered support and information about pain and excluded if their only intention was to advertise or sell a product.

Excluded websites

Chronic pain OSS websites that did not specifically indicate they were for young people or specific to adults, caregivers or family members of children experiencing chronic pain were excluded. Following the methodology of Kaicker et al. (2010) sponsored links and banner advertisements were excluded. Chronic pain related single author blogs with comment sections and related groups for adolescents that existed within other social media networks (e.g., Facebook, YouTube) were excluded. OSS indicated to target chronic illness or a specific health or mental health condition (e.g., juvenile arthritis or psychological pain) were also excluded.

OSS search strategy and selection

An expert librarian at the University of Adelaide Barr Smith Library assisted with searching the internet for relevant results and following the review and analysis of online communities for breast cancer survivors, two complementary search strategies were used to locate relevant OSS (Bender et al., 2013). Websites were identified in both search strategies through a search of Google (www.google.com) as it represented the most popular search engine used by over 92.2% of the worldwide market at the time of the study (Statcounter, 2021). To ensure each Google search produced new and unbiased results, the “incognito mode” setting was utilised.

A standard academic literature search, utilised Boolean operators (e.g., “OR” and “AND”) to connect a string of terms related to the research question. Henderson et al. (2012) asked a sample of adolescents to produce search terms relating to seeking information about pain online. Phrases adolescents endorsed they would use to search for pain-related websites included: “sore”, “uncomfortable”, “throbbing”, “ache”, “pain” and “hurt”, as we wished to focus on websites adolescents would find online, but these terms were also used in the final search string. A logic board was created by combining sets of synonyms for “adolescents” (e.g., teen*, young, juvenile, youth), “children” (e.g., kid*, paediatric), “chronic” (e.g., persistent, long-standing, long-term, continuing, continuous) and “online social support” (e.g., forum, chat, online, virtual, group, discussion, community). As the Google search engine limits queries to 32 words, the Boolean operators were broken down into five individual searches (See Appendix A for Final Boolean Search Strings). Using this first approach, five searches were conducted in May 2021, and all accessible hits, excluding advertising websites, were investigated.

To access OSS websites young people might find online, a second approach was used following a standard Google query including four to six words. Twelve searches were conducted in the Google search engine in May 2021 using query terms generated in the logic board grid (e.g., “chronic pain forum teen*”) (See Appendix B for Final Search Strings). Following Bender et al. (2013) strategy, the top 100 search hits for each search were reviewed and determined if they met the inclusion criteria, totalling 1200 return search results. All sites were reviewed over a two-month period (July to August, 2021).

Identification of website features

The second phase involved the first author extracting information on the OSS’ general characteristics (e.g., name of website, URL, purpose, country of origin, affiliation, description). The type of communication was identified (e.g., asynchronous forum, synchronous chat room or synchronous virtual video meeting). The date of the most recent forum post was recorded for the asynchronous forums. Furthermore, it was recorded if OSS contained evidence of moderation, and if so, if moderated by a clinician. Information regarding site access was gathered (e.g., registration requirements, the specified age range, unlocked or locked nature and any cost associated). Finally, specific features were extracted for review (e.g., if community guidelines were available, anonymous function, if contact details were provided, video function and report abuse function).

Following the methodology of Bender et al. (2013), a coding scheme was developed to classify the purpose and affiliation. Websites were classified as moderated if stated. If specific site functions were not outlined in the website description the function was identified as unknown. The first author extracted the data, and cross-checking was conducted by all authors.

Results

The initial search totalled a yield of 1319 websites. Seventy-five websites were considered potentially eligible and subject to preliminary analysis. As shown in Figure 1, 40 sites were excluded and 24 were identified as duplicate websites (See Appendix C for Duplicate OSS Sites and Appendix D for Excluded OSS Sites). Websites excluded were as follows: age not specified (n = 8); open to all ages (n = 11); OSS for caregivers (n = 2); OSS for clinicians (n = 1); OSS not specific to chronic pain (n = 6); condition specific (n = 11); OSS for chronic illness (n = 2); social media network (n = 5) and blog (n = 8). A total of 11 OSS websites met the inclusion criteria. The complete inventory can be found listed in alphabetical order in Table 1.

Figure 1. Flow diagram of included OSS websites.

Table 1. Overview of included online social support websites^†.

	Name	URL	Purpose	Country of Origin	Affiliation	Description
1	Chronic Pain Anonymous	https://chronicpainanonymous.org/find-meetings/video-chat-meetings/	Chronic Pain	USA	Not-for-profit Organisation	‘CPA Young Persons Zoom Meeting’
2	Chronic Pain Australia	https://chronicpainaustralia.org.au/forum/a-home-for-under-25-s-who-hurt	Chronic Pain	Australia	Not-for-profit Organisation	‘A home for UNDER 25’s Who Hurt!’
3	ConnectAbility	https://myconnectability.org/event/virtual-teen-parent-chronic-pain-support-group-2/2021-01-09/	General Health	USA	Not-for-profit Organisation	Virtual ‘Teen/Parent Chronic Pain Support Group’
4	Creative Healing for Youth in Pain	https://mychyp.org/what-we-offer/	Chronic Pain	USA	Not-for-profit Organisation	‘CypChat’ Online Zoom Video Meeting for Youth
5	Daily Strength	https://www.dailystrength.org/group/chronic-pain/discussion/young-women-20s-suffering-from-chronic-pain	General Health and Mental Health	USA	For-profit Organisation	‘Young women (20s) suffering from chronic pain’
6	Forum Scope	https://forum.scope.org.uk/discussion/80534/hi-my-name-is-lys-teenager-suffering-from-chronic-pain-want-to-meet-people	Disability	UK	Not-for-profit Organisation	‘Hi, my name is Lys! Teenager suffering from chronic pain, want to meet people’
7	Growing Pains	http://growingpains.org/	Chronic Pain	USA	Not-for-profit Organisation	‘For Adolescents Living with Pain - ACPA Growing Pains Community’
8	Reachout Forum	https://forums.au.reachout.com/t5/Disability-and-chronic-illness/Coping-with-chronic-pain/m-p/425284	Mental Health	Australia	Not-for-profit Organisation	‘Coping with Chronic Pain’
9	The Comfort Ability Program	https://www.thecomfortability.com/pages/sign-up-for-online-health-chats	Chronic Pain	USA	Hospital	‘Online Health Chats & Webinars’
10	US Pain Foundation	https://uspainfoundation.org/news/join-the-pediatric-pain-warrior-programs-online-events/	Chronic Pain	USA	Not-for-profit Organisation	‘Paediatric Pain Warrior Group Meetings’
11	WCH Paediatric Chronic Pain Service	https://www.wch.sa.gov.au/patients-visitors/children/care-and-support/paediatric-chronic-pain-service	General Health	Australia	Hospital	‘Online Health Support Chat’

^†All sites last accessed August 31st, 2021.

Purpose and affiliation

Six (54.5%) of the websites provided OSS on chronic-pain-specific websites. The remaining OSS were published on general health, mental health or disability specific websites. The majority of the OSS sites (81.8%) were affiliated with not-for-profit organisations. Only two sites (18.1%) were affiliated with a hospital, namely, the Women’s and Children’s Hospital in Adelaide, Australia, and Boston Children’s Hospital in Boston, USA. One website was affiliated with a for-profit organisation (www.dailystrength.org). However, the intention of this site is to offer free online health communities although it has paid advertisements on the banners of the site (www.dailystrength.org).

Features adherence to recommendations

Seven of the features identified in Table 2 (e.g., moderation, registration required, community guidelines, no cost associated, anonymous function, contact details and report abuse function) have been reported in previous research to impact the frequency of use, understanding, reach, safety and overall experience for young people using OSS. Sites were scored 0 to 7 with the number of recommendations adhered to. These scores were based on publicly accessible information, thus some locked sites may include features suggested in the literature.

Table 2. Features of online social support websites in order of most features adhered to.

	Name	Type of OSS Communication	Most recent post	Target Age	Cost	Locked	Moderation	Community Guidelines Available	Anonymous Function	Contact Details Provided	Report Abuse Function	Video Function	Available as of 31.08.21	Features Adherence (0–7)
1	The Comfort Ability Program	Synchronous Online Chat	N/A	13+ (parental consent)	No	Yes	Yes Clinician Moderated	Yes	Yes	Yes	Yes	No	Yes	7
2	WCH Paediatric Chronic Pain Service	Synchronous Online Chat	N/A	10–18 (parental consent)	No	Yes	Yes Clinician Moderated	Yes	Yes	Yes	Yes	No	Yes	7
3	Chronic Pain Australia	Asynchronous Forum	Sept 2018	Under 25	No	No	Yes	Yes	Yes	Yes	Yes	No	No	6
4	Forum Scope	Asynchronous Forum	May 2021	Unknown	No	No	Yes	Yes	Yes	Yes	Yes	No	Yes	6
5	Reachout Forum	Asynchronous Forum	May 2021	14–25	No	No	Yes	Yes	Yes	Yes	Yes	No	Yes	6
6	Daily Strength	Asynchronous Forum	Oct 2009	‘20s’	No	No	No	Yes	Yes	Yes	Yes	No	No	5
7	Growing Pains	Asynchronous Forum	Unknown	13–18	No	Yes	Yes	Unknown	Yes	Yes	Unknown	No	No	5
8	Chronic Pain Anonymous	Synchronous Video Meeting	N/A	Unknown	No	No	Unknown	Yes	Unknown	Yes	Unknown	Yes	Yes	3
9	ConnectAbility	Synchronous Video Meeting	N/A	Unknown	Unknown	No	Yes Clinician Moderated	No	Unknown	Yes	Unknown	Yes	No	2
10	Creative Healing for Youth in Pain	Synchronous Video Meeting	N/A	Unknown	Unknown	Yes	Unknown	Unknown	Unknown	Yes	Unknown	Yes	No	2
11	US Pain Foundation	Synchronous Video Meeting	N/A	Unknown	Unknown	Yes	Unknown	Unknown	Unknown	Unknown	Unknown	Yes	No	1

Type of communication

Five of the OSS sites (45.5%) used asynchronous communication via a forum, message or discussion board. The number of posts published across these forums were 34, 14, 5 and 62 (one site was locked, and the researchers were unable to view posts). The most recent post on the five forum sites was in May 2021 (Forum Scope UK). However, the most recent forum post on one site was over 10 years ago in October 2009 (Daily Strength). One of the sites published had over 35,000 views on their forum specific to young people with chronic pain, this is indicative of the wide reach of these sites (Chronic Pain Australia).

Four of the sites (36.4%) used synchronous communication via a virtual video meeting link to connect users. These four sites published a title, description and meeting time with a password and link to a video meeting platform. The remaining two OSS sites (18.2%) utilised synchronous communication via an online chat.

Age and costs

The target age group for the OSS sites was only explicitly indicated on six (54.5%) of the websites. Across these six sites, the target audience age spanned from 10 to 25 years of age. The majority of the websites reported (n = 8, 72.7%) to be free of charge for young people experiencing chronic pain. Three of the websites did not explicitly indicate they were free of charge; however, a registration or membership fee was not mentioned across any of the identified OSS sites.

Moderation and site access requirements

More than half of the OSS sites (n = 7, 63.6%) were classified as moderated, and three (27.3%) of the sites were indicated to be moderated by a clinician, including professional counsellors and paediatric psychologists.

Access requirements across the OSS sites varied, six (54.5%) of the sites did not require registration or a password to view the site. Two of the four synchronous video meeting sites offered the date, time and password to enter the video chat without registration. The remaining five sites were locked and although these sites provided a description, registration was required to enter the group or to view any users’ information or posts.

Two of the sites were not open to registration at the time the data were collected. One site indicated “Our CHYP chat groups are currently full”, directing the user to sign up their newsletter to receive information about new groups to be announced soon (https://mychyp.org). Another site, the US Pain Foundation, had published information in April 2020 offering a “Teen Talk” weekly video meeting; however, the link provided led to a broken Zoom meeting link (https://uspainfoundation.org). It is unclear if this broken link was to be updated or if there were no future meetings scheduled.

Community guidelines and anonymity

Community guidelines were available for public viewing for more than half of the OSS sites (n = 7, 63.6%). It appeared only one of the open access websites did not publish community guidelines or rules. It is unknown if the remaining three (27.3%) OSS sites, due to the locked nature of these sites, had published community guidelines available to those who register.

Seven of the sites (63.6%) specified users had the option to remain anonymous in both asynchronous and synchronous forms of communication. Additionally, two of the synchronous sites, both being affiliated with a hospital, explicitly indicated for users to remain anonymous at all times. For the remaining four OSS sites offering a virtual video meeting for young people experiencing chronic pain, anonymity is unlikely to be maintained. However, as the community guidelines did not indicate or could be available for these four video meeting sites, it could be an option for young people to turn off their camera and create an anonymous or non-identifiable username.

Four of the sites offered information on their website about a virtual video meeting, including a link to a video-conferencing platform. Most of these sites offered a time and a date for the virtual meeting to occur specifying this would be ongoing weekly or monthly. However, it is unknown if these meetings occurred as frequently as specified and if the default option was to keep the video function off.

Contact details and ‘report abuse function’

All of the websites (n = 11, 100%) provided contact details via an email address, phone number or contact form. However, the response rate or response procedures to any contact made is unknown. Following the recommendation of El Morr et al. (2020), OSS sites were reviewed for the “Report Abuse Function”. Seven of the OSS sites (63.6%) had a clearly accessible “Report Abuse Function” or similar function (e.g., Report Inappropriate Content) or stated in the guidelines to uphold this function in real-time via the constant presence of a moderator. It is unknown for the other sites (n = 4, 36.4%) if this feature was used, as these sites were locked or exist via a video meeting platform.

Discussion

To our knowledge, this study has offered the first critical analysis of the available English-language OSS for young people with chronic pain and revealed only 11 OSS websites for young people with chronic pain worldwide. Given the low-cost, near universal access and ubiquitous usage of the internet for young people, this is surprising.

The 11 websites were from the USA, the UK and Australia and affiliated with both non-profit and for-profit organisations. No cost was specified to register or engage with any of the OSS sites, improving access for all users. Cultural factors, such as religion, were not included in this study, although one website was affiliated with spiritual fellowship (www.chronicpainanonymous.org). Cultural factors have been recognised as influential in engagement with online content (Stinson et al., 2014). It is noteworthy that all 11 sites were from only three westernized countries. Of the 11 websites, one website link was broken in the observation period of this study. As of August 2021, this website (www.growingpains.org) is unable to be located; it is unknown if this forum has been deleted or is undergoing maintenance. This is disappointing as this website followed many of the recommendations in the literature, such as moderation, to provide a safer online community. Furthermore, three of the sites advertising virtual video meetings offered broken links, and appeared to only have details of past meetings or were closed to registration. For two of the asynchronous forums, the most recent posts were published in 2009 and 2018. Consequently, only 5 of the 11 OSS websites may be considered active or accessible as of August 2021. In a qualitative study, young people with chronic pain (aged 6–17) were found to oscillate between hope and despair (Sällfors et al., 2002). This oscillating point may coincide with a young person searching for support online, only to find an inaccessible or inactive community.

The majority of the 11 websites identified were described as moderated or contained evidence of moderation, a strength supported by the literature to mitigate safety concerns and the potential of online bullying (Fales et al., 2018; Forgeron et al., 2019; Y. X. Ho et al., 2014). Three of the sites indicated moderation by a clinician, including professional counsellors and paediatric psychologists with expertise in paediatric chronic pain. Technical communication scholars recognise the need to build and preserve trust in online communities and so the presence of a health care professional can improve quality control and improve outcomes in OSS (Bakke, 2019; Henderson et al., 2012). Moderators in this instance may be able to identify offer evidence-based advice and encourage professional help seeking.

The option to remain anonymous was afforded by seven of the websites. Moreover, only three of the sites allowed young people to remain anonymous. Research has identified the anonymity of a screen name can remove the risk of stigmatisation and encourage disclosure (Becker, 2013), both important for a young person with chronic pain. Though research has also suggested anonymity can encourage users to behave differently than they would in face-to-face interactions, such as in group polarisation, deceptions, provision of poor-quality information, flaming (e.g., insulting other users) and trolling (e.g., intentionally antagonising other users) (Barlett et al., 2016; Feng et al., 2013; Omernick & Sood, 2013) the OSS guideline is worthy of value for a young person’s freedom of choice.

Five of the sites were locked, requiring a password to enter the OSS group. For the remaining sites, the posts on the forum were publicly viewable or the virtual video meeting time, and password were publicly accessible. This is of particular concern due to safety and privacy concerns for young people using the internet. It is unknown if once the young person was to click the link to the virtual video meeting, if they would be taken to a waiting room or required to complete further registration.

To promote accessibility and transparency of the online environment, creators and developers of OSS groups are recommended to clearly publish the guidelines or rules of the community (White & Dorman, 2001). In line with recommendations, seven of the websites published community guidelines. Furthermore, consistent with suggestions in the research, all of the websites provided contact details for the young person, or their family member or caregiver to contact. However, the response rate or quality of the responses if a young person was to reach out remains unknown.

Overall, there was significant variability in the features of the 11 identified websites. Of the five sites considered active and available as of August 2021, it appeared only two of these sites follow all of the recommendations in the literature with respect to mitigating the potential for harm or safety concerns. For example, being moderated by clinicians, requiring registration, encouraging anonymity, publishing community guidelines and providing contact details. Both of these sites were hospital affiliated and offering support for those aged 10 to 18. Additionally, both offered separate online chats for parents or caregivers of young people experiencing chronic pain. A direction for future research may be to consider the benefits of parent/caregiver specific OSS websites or groups.

There were a number of websites excluded as they were described to be for young people with specific conditions (e.g., juvenile arthritis, myalgic encephalomyelitis/chronic fatigue syndrome, musculoskeletal pain, myasthenia gravis and migraines). This is a positive finding as some of these conditions are considered less common in young people, indicating the potential for OSS to leverage the “long tail” (Bender et al., 2013). The “long tail” approach stems from business models and has been applied in health research to represent a better impact for individuals with rare or less common conditions that are poorly supported by traditional public health models (Armstrong, 2008; Kreuter et al., 2014). However, in contrast, chronic pain can be notoriously hard to diagnose. For many young people with chronic pain, to correctly receive a diagnosis may take considerable time, or they may not receive a diagnosis at all. For these young people, OSS targeting specific conditions is less helpful and may add to confusion.

Five social media network sites, hosted on Facebook, described as supporting young people with chronic pain, were revealed in the search. These sites were excluded for the purpose of this study as we focussed on traditional OSS. The proliferation and growing popularity of social media will inevitably continue to increase opportunities to access support online. Tolley et al. (2020) concluded adolescents with chronic pain appear ideally suited to benefit from online peer support groups and social networks; however, research into outcome measures is lacking (Tolley et al., 2020). Undoubtedly, this population is accessing online support through social media; however, the potential to increase wellbeing through social connection is balanced against the risk of an unregulated online environment, increased exposure to online bullying and potentially misleading or harmful health advice (Brown & Gauntlett-Gilbert, 2021; Forgeron et al., 2019). An in-depth analysis of the available social media groups for this population is warranted. Additionally, the full range of social media contexts, the features of these groups (e.g., moderation) and the associated outcomes should be explored.

The target age ranges for the identified OSS websites in this study were broad (e.g., 14–25), vague (e.g., “20s”) or not stated at all. This is of interest as chronic pain in young people must also be considered within the developmental trajectory. The experience of pain differs for younger children (e.g., 8–12 years of age) and adolescents (e.g., 13–18 years of age) (Palermo et al., 2014). Adolescents, considered “emerging adults”, face a challenging transition regarding developmental tasks, social development and transitions in health care systems (Stinson et al., 2014). Additionally, adolescence represents a sensitive period for developing personal self-identify, often occurring in the context of peer relationships (Kohut et al., 2016). It is possible that this developmental process is disrupted when pain impedes on social connections (Forgeron et al., 2013). Thus, accessible social support is developmentally timely for this group.

Professionals and clinicians seeking guidance on the value of the available OSS for youth with chronic pain should consider the website features highlighted in this study. Despite the perceived benefits of these online communities, without objective evidence or outcome data, it remains too early to provide concrete recommendations with regards to specific OSS sites. However, two hospitals affiliated OSS websites (The Comfortability and WCH Online Health Chat) did follow safeguarding recommendations identified in the literature.

Our study points to features that may be considered “gold standard” for future websites. Moderation is an important key feature of OSS communities to mitigate safety concerns and the risk of bullying incidences. Where possible, the presence of a medical expert, clinician or professional as a moderator or contributor in OSS communities can improve information quality control and lead to improved health outcomes. In online settings, moderators can also increase participation, and positively influence social interactions. Lack of content moderation on these sites may also lead to the normalisation of maladaptive behaviours. Registration should be required, or alternatively a password provided by the moderating team to access the site. Young people using OSS may share confidential information posing safety concerns, a locked site with registration required may contribute to members’ privacy and safety. Contact details should be provided via an email address, phone number or contact form to ensure a responsive form of communication if the young person, or their caregiver, is seeking information or to report any concerns. The response rate and response procedure to contact made should be thorough and appropriate. A “Report Abuse Function” or similar function (e.g., Report Inappropriate Content) should be provided to extend safeguarding of OSS users. This function is recommended to send an immediate message to moderators to take corrective action. Alternatively, to uphold this function in real-time via the constant presence of a moderator. Websites should be free of charge as associated costs may pose additional barriers to the accessibility and availability of OSS for young people with chronic pain. An anonymous function should be afforded for young people to protect privacy and may encourage disclosure without the risk of stigmatisation. However, it should be noted that the relative anonymity afforded in OSS may inspire users to behave differently than they would in face-to-face interactions. It is important moderation is provided for all OSS affording anonymity to mitigate this potential concern. A website description should be clearly visible on the main page specifying the target age range for the OSS. Due to the varied developmental needs, preferences, interests and communication styles for younger children, early adolescents, and adolescents this is an important feature to improve user engagement. Community guidelines and Frequently Asked Questions (FAQs) pages should be stipulated for public viewing to orient new users and for existing users’ reference. These guidelines can be viewed by both the young person, and their caregiver, to establish rules to ensure an expected standard of behaviour to create a safe environment for users to interact.

Whilst this research study has highlighted the dearth of high-quality OSS for young people living with chronic pain, the sites were limited to content published in English, thus there may be OSS sites that have been missed from other countries. Secondly, the search results are contingent on the search engine used and the terms included in the search strategy. To overcome this limitation methods included using common terms, a range of terms, terms endorsed in the research by young people with pain, two complementary strategies and the search engine with the greatest market share, Google (www.google.com). Additionally, the findings of this study are time specific: OSS and their features are not static. As has been reported, sites were removed or modified during the observation period. In the time that has passed since the last search, additional OSS may have emerged. Lastly, some information about the site features could not be obtained due to the locked nature of the groups.

To support clinical recommendations, more research is required to determine how the usage of OSS, and the association between usage and website features, may influence outcomes such as social connections, emotional wellbeing, school attendance and physical functioning. To improve our understanding, it is essential to understand directly from young people how they experience these websites, including opinions about usability, trust and engagement. Longitudinal research is also required, with the possibility of considering the impact of developmental shifts on OSS usage and outcomes.

Conclusions

This study found few websites (N = 11) and variability in the features of OSS for young people with chronic pain. Only two of the OSS sites were considered active and available as of August 2021, both being affiliated with a hospital and offered features suggested by the literature to protect their users and mitigate the potential for harm. When young people go online with the hope of receiving support, a safe space to share experiences may not be easily found. It appears a significant opportunity is being missed to foster social connections that may be unavailable offline. To facilitate the development of better OSS for young people with chronic pain, the website features explored in this study contextualised by the “gold standard” of evidence-based literature should be carefully considered.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The data on which this research is based are available at the internet links provided for each OSS site.

Appendix A

- First search strategy Google Boolean search term strings

Search 1: “pain AND (sore OR uncomfortable OR throbbing OR ache OR hurt OR chronic OR persistent OR long-term OR recurrent OR continuing OR nociceptive)) AND (kid OR child OR young person OR young people OR adolescent OR teen OR youth OR paediatric) AND ((online OR internet OR live OR electronic OR websites OR mobile OR on-line OR virtual) AND (forum OR message OR board OR discussion OR conversation OR group OR chat OR community OR meet OR video))”

Search 2: “pain AND (sore OR uncomfortable OR throbbing OR ache OR hurt OR chronic OR persistent OR long-term OR recurrent OR continuing OR nociceptive)) AND (kid OR child OR young person OR young people OR adolescent OR teen OR youth OR paediatric)) AND (online OR social OR support OR community)”

Search 3: “pain AND (sore OR uncomfortable OR throbbing OR ache OR hurt OR chronic OR persistent OR long-term OR recurrent OR continuing OR nociceptive)) AND (kid OR child OR young person OR young people OR adolescent OR teen OR youth OR paediatric)) AND (message OR board OR forum))”

Search 4: “pain AND (sore OR uncomfortable OR throbbing OR ache OR hurt OR chronic OR persistent OR long-term OR recurrent OR continuing OR nociceptive)) AND (kid OR child OR young person OR young people OR adolescent OR teen OR youth OR paediatric)) AND (chat OR room OR chat-room))”

Search 5: “pain AND (sore OR uncomfortable OR throbbing OR ache OR hurt OR chronic OR persistent OR long-term OR recurrent OR continuing OR nociceptive)) AND (kid OR child OR young person OR young people OR adolescent OR teen OR youth OR paediatric)) AND (virtual OR group OR Zoom OR video OR video meeting OR meet-up))”

Appendix B

- Second search strategy Google search term strings

Search 1: “chronic pain teen adolescent young chat”

Search 2: “chronic pain teen young message board”

Search 3: “chronic pain young online support group”

Search 4: “chronic pain teen adolescent young forum”

Search 5: “chronic pain young people online community”

Search 6: “chronic pain teen video zoom meeting”

Search 7: “chronic pain kids children message board”

Search 8: “chronic pain kids children chat room”

Search 9: “chronic pain kids online group community”

Search 10: “chronic pain children kids forum”

Search 11: “chronic pain children virtual video meeting”

Search 12: “chronic pain kids young zoom meet-up”

Appendix C:

Duplicate OSS sites

Table

	Name	URL	Number of Duplicate Search Appearances
1	Forum Scope	https://forum.scope.org.uk/discussion/80780/help-i-am-24-and-im-basically-handicapped-from-pain	1
2	Growing Pains	http://growingpains.org/	6
3	The Comfort Ability Program	https://www.thecomfortability.com/	7
4	WCH Paediatric Chronic Pain Service	https://www.wch.sa.gov.au/patients-visitors/children/care-and-support/paediatric-chronic-pain-service	10

Appendix D:

Excluded OSS sites*

Table

	Name	URL	Reason for Exclusion
1	Arthritis ACT Pain Support	http://www.painsupportact.org.au/	Age not specified Condition specific – arthritis
2	Beyond Blue	https://www.beyondblue.org.au/get-support/online-forums/young-people/life-is-pain	OSS not specific to chronic pain
3	Cassie and Friends	https://cassieandfriends.ca/event/teen-talks/	Condition specific – arthritis
4	Cheshire East Council Live Well Services	https://livewellservices.cheshireeast.gov.uk/Services/4958	Chronic Illness OSS
5	Connect Groups – Arthritis	https://connectgroups.arthritis.org/	Condition specific – arthritis Open to all ages
6	Creating Accessible Neighbourhoods	http://canbc.org/blog/community/	Blog
7	Daily Strength – Chronic Pain	https://www.dailystrength.org/group/chronic-pain	Age not specified
8	Daily Strength – Juvenile Arthritis	https://www.dailystrength.org/group/arthritis-juvenile	Condition specific – juvenile arthritis
9	Dragon Claw	https://www.dragonclaw.net/forum-introduction	Condition specific – arthritis Age not specified
10	Emerge Australia	https://www.emerge.org.au/young-people-living-with-mecfs	Condition specific - myalgic encephalomyelitis/chronic fatigue syndrome
11	Facebook – Chronic Illness? More like Chronic Chill-ness Group	https://www.facebook.com/groups/264228794003164/	Social media network
12	Facebook – Headache Australia Support Group	https://www.facebook.com/groups/HeadacheAustraliaSupportGroup/	Social media network
13	Facebook – Juvenile Arthritis Support Group	https://www.facebook.com/groups/1671853906377379/	Social media network
14	Facebook – Teens and Kids with Chronic Pain, Fatigue and Illness Group	https://www.facebook.com/chronicallyyoung/	Social media network
15	Headspace Community	https://headspace.org.au/eheadspace/spaces/community/	OSS not specific to chronic pain
16	Headspace Group Chat	https://headspace.org.au/eheadspace/group-chat/	OSS not specific to chronic pain
17	Health Unlocked	https://healthunlocked.com/painconcern	Age not specified
18	Huggies	https://www.huggies.com.au/forum/14-your-babys-family/130-older-siblings/1182775	OSS for caregivers
19	Joint Pain Relief	https://jointpainrelief.com.au/	Blog
20	Kids Helpline	https://kidshelpline.com.au/get-help/webchat-counselling	OSS not specific to pain
21	Lupus Foundation Help	https://www.lupus.org/resources/lupusconnect	Condition specific – lupus
22	Miles for Migraine – Teen Talks	https://www.milesformigraine.org/teen-talks/	Condition specific – migraine
23	Musculoskeletal Australia	https://www.msk.org.au/msk-kids/	Condition specific – musculoskeletal
24	National Fibromyalgia & Chronic Pain Association	https://www.inspire.com/groups/chronic-pain/	Condition specific – myasthenia gravis
25	Pain BC	https://www.painbc.ca/about/programs/pain-support-wellness-groups	Age not specified
26	Pain Concern	https://painconcern.org.uk/transcript-programme-10-young-people-pain/	Blog
27	Pain Connection	https://painconnection.org/support-groups/national/	Open to all ages
28	Pain Management	https://www.painmanagement.org.au/pain-support-groups-1	Open to all ages
29	Pain Research Forum	https://www.painresearchforum.org/news/25893-new-cause-unexplained-pain-children	Blog
30	Pain Source	https://painresource.com/life-with-chronic-pain/teens-living-with-chronic-pain-face-unique-challenges/	Blog
31	Starlight Livewire	https://www.starlight.org.au/about-us/what-we-do/livewire	Chronic Illness OSS
32	Take Pain Check	https://www.takeapaincheck.com/blog	Blog Social media network
33	Teen Pain Help	http://www.teenpainhelp.org/	Blog
34	The Australian Pain Society	https://www.apsoc.org.au/pain-in-childhood	OSS for clinicians
35	The Mighty	https://themighty.com/2020/05/teenager-chronic-pain/	Blog
36	Therapy Tribe	https://support.therapytribe.com/teen-support-group/	OSS not specific to chronic pain
37	Valley View	https://www.vvh.org/event/virtual-chronic-pain-support-group-3/	Age not specified
38	What to Expect	https://community.whattoexpect.com/forums/school-age-years/topic/growing-pains.html	OSS for caregivers
39	Wrong Planet Forum	https://dev.wrongplanet.net/forums/viewtopic.php?f=34&t=327341	OSS not specific to chronic pain Broken link (31/08/21)
40	Young Adults with Arthritis Plus	https://www.youngadultswitharthritisplus.com/	Condition specific – JA Broken link (31/08/21)

*All sites last accessed August 31st, 2021.