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