1 Children and youth with complex care needs (CCN) are individuals with multidimensional health and social care needs, who may or may not possess a diagnosis of a recognized medical condition (Brenner et al.). Children and youth with CCN present across diverse settings, requiring services from multiple care providers (Luke, Doucet, and Azar), which can result in significant physical, mental, emotional, and financial pressures on their caregivers. Moreover, families of children and youth with CCN often have multiple unmet informational needs (Roche and Skinner). Reading information on the Internet has been shown to help parents and guardians improve their understanding and gain a vocabulary related to their child’s health concerns (Ziebland and Wyke); however, conducting relevant searches with a limited understanding of a suspected or confirmed diagnosis and interpreting identified information are known barriers to accessing information and support (Roche and Skinner).

2 Online peer-to-peer (P2P) support represents an opportunity for families of children and youth with CCN to communicate with peers and receive support without leaving their homes (Cole et al.). P2P support can help families increase their knowledge of available services and resources (Santelli, Turnbull, and Higgins) and promote problem solving (Bray et al.). Social media websites in particular provide a platform for the exchange of emotional and informational support among users (Shavazi, Morowatisharifabad, and Mellat Ardekani; Setoyama, Nakayama, and Yamazaki). For example, Facebook has been identified as an online environment conducive to P2P support and health-related information seeking (Bender, Jimenez-Marroquin, and Jadad; Farmer et al.). However, the availability and use of P2P support groups for families of children and youth with CCN on Facebook is unclear. The current study aimed to identify P2P support groups on Facebook that target families of children and youth with CCN in New Brunswick and characterize the purpose, use, and reach of the identified groups.

3 Meeting the support needs of caregivers of children and youth with CCN can be challenging for care providers due to the complex nature of these conditions. Approximately 15% of children and youth in Canada live with a chronic condition affecting their everyday life (Strickland et al., 2015). They face a range of health concerns, including non-chronic, acute conditions (e.g., pneumonia, trauma); episodic chronic conditions (e.g., asthma, depression, anxiety); lifelong chronic conditions (e.g., Type I diabetes, congenital heart disease); progressive or life-limiting conditions (e.g., cystic fibrosis; cerebral palsy; down syndrome); and malignancies requiring treatment (e.g., leukemia, tumours) (Children’s Hospital Association, 2021). The exact incidence and prevalence rate of children and youth with CCN is not well understood due, in part, to ambiguity in the terms used to define this population (Carnevale et al., 2008).

4 Increasingly, caregivers are turning to the Internet to connect with individuals in similar circumstances to exchange informational and emotional support (Giustini et al.). Social media websites and mobile applications provide virtual spaces for caregivers to engage in health-related communication. In this paper, we define social media as any web-based tool used for “computer-mediated communication” between two or more individuals (Grajales et al.). Social media websites and applications may be a particularly useful means of facilitating P2P support for caregivers of children and youth with CCN, due to their accessibility, ease of use, and prevalence (Moorhead et al.).

5 Informal caregivers of children and youth with CCN (e.g., parents, other family members) often take on multiple roles related to the care of their child, including 24/7 medical care to ensure their well-being and survival (Kirk et al., 2005; Woodgate et al., 2015). These caregivers often carry the burden associated with lack of continuity of care and managing health system complexities, including coordinating care for their child (e.g., assessments, treatments) (Cady & Belew, 2017) and providing routine and/or special at-home medical care for their child (e.g., post-operative care) (Woodgate et al., 2015). The pressures associated with carrying out these tasks can be further compounded by work commitments, financial strain, transportation issues, and caring for other children (Pratt-Chapman & Willis, 2013), which can lead to increased caregiver stress and loneliness (Vasileiou et al.). Parent-to-parent support has been shown to decrease psychological distress, enhance coping skills, and increase self-efficacy toward problem solving in caregivers of children with CCN (Bray et al.; Santelli, Turnbull, and Higgins).

6 Online P2P support can promote access to information (Kaal et al.), improve knowledge about a particular condition (Rupert et al.), and facilitate the exchange of tailored informational and emotional support (Shavazi, Morowatisharifabad, and Mellat Ardekani; Diefenbeck, Klemm, and Hayes; Partridge et al.); this occurs through the sharing of personal experiences with others (Henwood et al.; Moorhead et al.), expression of frustrations (Diefenbeck, Klemm, and Hayes), and inquiries about one’s own care or the care of a family member (Scharett et al.). Moreover, relationships formed through online interactions can result in feelings of community and solidarity (Horter et al.). Finally, engaging in online P2P support can help fill a gap in support needs that may have been previously unmet by professional care providers (Niela-Vilén et al.).

7 P2P support on social media facilitates social support between peers by creating an environment that connects support seekers with support providers (Rains and Wright). Social support is further fostered through the availability of connection with individuals outside one’s personal social network (Rozzell et al., 2014), with whom individuals might share more health-related commonalities and experiences. The most common types of health-related support messages exchanged on social media consist of informational, emotional, and tangible support (i.e., provision of physical or instrumental aid) (Bender, Jimenez-Marroquin, and Jadad; Farmer et al.). Informational and emotional support is often found to be the most common type of support exchange in online P2P support groups (Rains, Peterson, and Wright); tangible support is the least common (Embuldeniya et al.; Mo and Coulson).

8 Potential risks identified with engagement of health-related online P2P support include the reliability of information posted to groups (Moorhead et al.; Stock, Martindale, and Cunniffe) and members’ ability to appraise relevant information (Park et al.). However, an emphasis on emotional support within some support groups has been observed to result in fewer posts related to medical information, suggesting that concerns regarding quality of information may not be a universal concern (Van Uden-Kraan et al.). Individuals who participate in online P2P support have also cited concerns related to lack of confidentiality and privacy (des Bordes et al.; Moorhead et al.; Zhang). Despite these concerns, the ability to share experiences and find validation through online P2P interactions is often perceived by users to outweigh risks around privacy and potentially low quality of information (Dumaij and Tijssen).

9 Although online health-related interventions have been criticized due to barriers typically experienced by low-socioeconomic and vulnerable populations (Love et al.), improved public accessibility of the Internet has led to a rise in accessibility in recent years (Rideout and Katz). By 2018, approximately 86% of Canadians had access to the Internet at home, with 61% reporting activity with social media websites (Canadian Internet Registration Authority). Among those available, Facebook led in popularity, with approximately 77% of users registered on the website (Canadian Internet Registration Authority). Today, Facebook communities include a wide diversity of users, including patients, caregivers, health professionals, and researchers (Green et al.). This increasingly widespread use of the Internet suggests that online P2P support is a more accessible path to P2P support for low-income families, who are often not able to attend in-person support groups due to various barriers (e.g., transportation, work) (Swindle et al.). New Brunswick, in particular, has one of the highest rates of poverty in the country (Conference Board of Canada); even so, approximately 77% of NB households had access to the Internet as of 2012 (Statistics Canada). Given recent reports on the quality and speed of Internet use in NB (Canadian Internet Registration Authority), it is likely that more New Brunswickers have gained access in recent years.

10 An important advantage of online P2P support is its ability to traverse geographical boundaries and time constraints (Naslund et al.). This benefit of online P2P support is particularly relevant for caregivers of children and youth with CCN in NB, who may not have the time or resources to attend inperson support groups or may be living in rural or isolated regions. The ability to connect with peers across the world has led to the development of numerous health-related Facebook support groups that aim to provide informational and emotional support to individuals in similar situations (Farmer et al.). Across the numerous social media platforms, Facebook appears to contain the largest number of support groups for caregivers and persons living with chronic diseases (de la Torre-Diez, Diaz-Pernas, Anton-Rodriguez, and Giustini et al). One disadvantage of these large-scale, international support groups is the inability of members to provide geographic-specific advice when a member expresses a need for particular services or resources. Caregivers of children and youth with CCN often require substantial support from services and care providers across multiple local settings (Luke, Doucet, and Azar), which can result in unmet informational needs (Roche and Skinner). Locally based P2P support groups on social media platforms, whether provincially or regionally based, represent an opportunity for caregivers to connect and provide navigational support through the provision of information and advice. Despite the widespread use of the Internet and social media, it remains unclear how NB caregivers of children and youth with CCN use social media to engage in P2P support for health-related communication. Moreover, the extent to which these types of P2P support groups are available and used by caregivers of children and youth with CCN in NB has not been previously explored.

11 The current study aimed to identify the number of P2P support groups on Facebook for caregivers of children and youth with CCN in NB and describe the purpose, use, and reach of identified groups. Caregivers of children and youth with CCN possess valuable knowledge obtained through lived experiences. Better understanding and awareness of online P2P support groups for caregivers may improve informal support networks and create bidirectional education opportunities between caregivers, health professionals, and community organizations. As a result, the following three broad research questions were identified and used to guide the environmental scan:

12 Few studies have attempted to identify and analyze health-related P2P support groups on Facebook. Farmer and colleagues aimed to quantify the number of Facebook groups connected to common medical conditions. These researchers noted that Facebook contains a large number of patient and carer groups (757), with over a quarter of a million individual users. Similarly, Mamun and colleagues examined the objectives, use, and reach of Facebook groups related to hypertension, revealing that the purpose of most identified groups was the creation awareness; active communication did not appear to occur between members. Another study examining the use of Facebook groups for persons with diabetes (Stellefson, Michael, et al.) found a greater emphasis on the exchange of informational support.

13 Bender and colleagues aimed to determine the purpose and use of Facebook groups related to breast cancer. Using content analysis, they applied a coding scheme to classify the age and geographical location of group creators. Results showed a large number of patient and carer groups (620) with over 1 million total members. Finally, in a study that analyzed user-generated content in a Facebook-based diabetes support group (Zhang, He, and Sang), researchers found that users’ interactions centre on the exchange of emotional and informational support and community building. All the observed support groups in these studies focused on an international audience of members across the social media platform, whereas the current study intends to explore geographic-specific Facebook groups. No studies, to the authors’ knowledge, have investigated Facebook-based P2P support groups that target caregivers of children and youth with CCN. The purpose of this study is to explore the purpose, use, and reach of P2P support groups on Facebook for caregivers of children and youth with CCN in NB.

14 An environmental scan was chosen to identify and describe available P2P support groups for caregivers of children and youth with CCN on Facebook. Environmental scanning is a process of collecting and organizing data about events or trends from multiple sources (Choo). Environmental scans, sometimes referred to as needs assessments (Rowell et al.) or internal assessments (Graham, Evitts, and Thomas-MacLean), are used in the health care sector to inform decision-making, strategic planning, and evidence-based policies (Charlton et al.; Graham, Evitts, and Thomas-MacLean). Although an agreed-upon, established methodology does not exist on conducting environmental scans (Rowell et al.), the process typically involves multiple methods of data collection (e.g., interviews, surveys, literature searches) (Society for Human Resource Management).

47 The current environmental scan sought to better understand the availability and reach of P2P support groups on Facebook for caregivers of children and youth with CCN in NB, as well as their purposes and use, by group members. We identified relevant Facebook groups that primarily target NB caregivers of individuals with CCN, including children and youth with CCN. Our environmental scan included a structured keyword search on the platform and consultations with key stakeholders from across the province. Facebook was selected due to its high rate of use by Canadians (Canadian Internet Registration Authority) and the large number of health-related P2P groups on the platform (Bender, Jimenez-Marroquin, and Jadad; Farmer et al.).

48 A total of forty-seven Facebook support groups were identified in the current scan with a combined 2,935 members. The purposes of groups were summarized into three overarching themes: (1) to facilitate the exchange of emotional and social support; (2) to provide a platform for the exchange of informational support; and (3) to create a “safe” space community conducive to sharing information.

49 True to the goal of online social networking in general, Facebook groups in the current study often aimed to develop an online community of peers facing similar situations. The purpose of groups, as created by group administrators (e.g., moderators), was communicated through the group descriptions. Analysis of these descriptions revealed that many groups encouraged members to share personal experiences, through narratives, that could lead to a community of support. Some groups even encouraged members to connect with peers one-on-one through private messaging on the platform or offline in person. Two groups existed to facilitate the organization and planning of offline meetings that took place in the local community; given the focus on geographic-specific groups in the current study (i.e., NB), this was not a surprising finding. These groups provided an online environment for members of the offline group to connect outside of meeting hours and exchange relevant information.

50 Despite the emphasis on the provision of emotional and social support in the description of Facebook groups, the exchange of informational support (inquiry-based posts or those detailing information or advice) appeared to be the most common use of groups. This finding is consistent with previous research on health-related Facebook P2P support groups (Greene et al.; Stellefson, Michael et al.; Zhang, He, and Sang). These findings also support the notion that caregivers of children and youth with CCN appear to be motivated to use online P2P support groups to supplement information on health-related issues (Martin et al.). Although informational posts (i.e., those providing unsolicited information) were most prevalent in public groups, these types of posts received fewer replies than inquiry-based posts (i.e., those requesting information). The latter result is not surprising, given that these types of posts generally ask a specific question or seek constructive feedback (Zhang et al.).

51 Previous content analyses of health-related Facebook support groups have noted a high percentage of posts advertising products or services (>25%) (Greene et al.; Mamun, Ibrahim, and Chowdhury). The current study found that only 9.3% of posts in public support groups were related to advertising; this finding is consistent with Stellefson and colleagues who found that only 6% posts in diabetes support groups promoted a product or service. In a similar study, Zhang and colleagues did not find any posts related to advertising. These types of posts can be problematic, particularly those promoting non-Canadian Food and Drug Administration and U.S. Food and Drug Administration–approved treatments (Greene et al.; Mamun, Ibrahim, and Chowdhury) or questioning the authenticity of health care authorities (Greene et al.). However, the current study did not find indications that P2P support groups for caregivers of children and youth with CCN are misleading or risky.

52 The majority of the groups were closed groups, meaning that the groups’ membership and content are not visible to non-members. Only fourteen groups were public groups, through which any user could view content published to the group. An additional twelve groups could not be categorized as either active or not active due to privacy restrictions. Facebook contains a feature that summarizes the number of posts over the past thirty days, which is visible even when a group is closed. Therefore, it is likely that many of the groups that could not be categorized were not active, as no posts were recorded over the past thirty-day period. Previous studies have limited their analysis of health-related Facebook groups to open groups due to this limited visibility for research purposes (Greene et al.; Mamun, Ibrahim, and Chowdhury; Stellefson et al.; Zhang, He, and Sang); however, the current study aimed to survey available P2P supports for caregivers of children and youth with CCN in NB, thus necessitating the consideration of both open and closed groups.

53 Previous research (Bender, Jimenez-Marroquin, and Jadad) has found that the majority of available online, health-related P2P support groups that specifically target individuals with breast cancer contained twenty-five or fewer wall posts. Although total wall posts were not counted in the current study, it is possible that this variable is linked to overall group activity level. The exact reasons why some groups are able to maintain sustained activity level (“successful”) over a longer period of time than others (“unsuccessful”) requires further research. It is possible that it is linked to the groups’ administration, specifically their moderators and administrators. The current study found that active groups had multiple moderators and group administrators, suggesting that perhaps these users influence active discussions in some way. Previous research (Stellefson et al.) has noted that inactive groups appear to have specific individuals (known as “engagement leaders”) publish the majority of posts, which typically include links to relevant resources or information but do not evoke discussions between members. This finding was also observed in the current study. These engagement leaders may contribute to declining participation in groups, perhaps being perceived as intrusive or “annoying” to members, in turn influencing activity in groups (Stellefson et al.).

54 Groups were included in the current scan if they targeted any NB caregivers of children and youth with CCN. While many general P2P support groups (i.e., not specific to NB) were identified through the keyword search, these groups were not included. It is likely that NB families use these non-geographically specific groups to exchange support and information with caregivers in similar situations (Farmer et al.). However, it is possible that locally based groups may provide families with navigational support relative to their specific needs as it pertains to their child’s care (Ammari and Schoenebeck). Indeed, some groups in the current scan did emphasize navigational support in their descriptions, which were used to determine the purpose of P2P support groups. Creators of groups often expressed feelings of isolation—encountering a lack of resources or support that led to the implementation of these groups on Facebook. Many of these groups emphasized the provision of navigational support as a primary purpose. Posts related to informational support and inquiries were also noted across public groups, which suggest that members use these P2P support groups for navigational support. It is possible that the emphasis on navigational support observed within the included Facebook groups may be unique to support groups that primarily target individuals in a specific geographic region, as opposed to large, international groups (Zhang, He, and Sang).

55 The current study included groups targeting caregivers and individuals with CCN, a category that involves multiple conditions and comorbidities. Indeed, a diverse range of conditions were targeted by groups in the current scan, with autism and related intellectual disabilities appearing most often. Only eight groups targeted caregivers of children and youth with any CCN (rather than specifying a condition), one of which invited families from the two other nearby Canadian Maritime provinces (i.e., Prince Edward Island and Nova Scotia). This was an important finding, as these three provinces share a regional children’s hospital based in Halifax. Therefore, caregivers of children and youth with CCN may benefit from the connections with peers in these other two provinces, particularly if they frequently travel to this hospital for services.

56 The majority of groups identified in the current scan (n = 44) were presented in English, despite identical keyword searches in French. Only one exclusively French support group was identified, with an additional two groups presenting information (i.e., title and description) in both English and French. It is unclear whether interactions within those two groups were bilingual due to the private nature of the groups. The province of NB is the only province in Canada that is officially bilingual (Office of the Commissioner of Official Languages). As of 2017, French was identified as the official first language of 32% of the NB population (Statistics Canada). The low number of bilingual and French language support groups identified in this scan suggests that there could be a lack of informal support available to Francophone caregivers of children and youth with CCN. However, this may also indicate a difference in the support needs of these two populations. For example, Francophone caregivers may preferentially seek support offline rather than online. More research is needed to determine potential cultural differences within this population.

57 Clarifying the range of available support groups for caregivers of children and youth with CCN has important implications for NB families, health professionals, and community organizations. For example, caregivers of children and youth with CCN may not be aware of the extent of social media– based support communities available from individuals in similar situations. Moreover, improved understanding of these groups can better equip care providers to direct caregivers to potentially useful support networks that optimize collective knowledge, obtained through lived experiences, with limited strain on existing resources.

63 NB caregivers of individuals with CCN of all ages, including children and youth with CCN, use Facebook to engage in P2P support. There are many groups available that aim to provide P2P support, across a broad range of conditions, such as autism, allergies, and brain injury. These groups primarily aim to create a safe community of emotional and informational support led by peers in similar situations. While most groups exist to provide this support online, some groups used as a source of support for members between offline meetings in the local community. Groups were often used by members in the exchange of navigational support, likely due to the focus on geographic-specific support groups in NB. Specifically, users were found to inquire about resources or services available to them in their geographic area to other users.

64 Further research is needed into the culture of closed P2P support groups on Facebook, particularly for health-related support. Future studies should determine potential differences between geographic-specific support groups, such as those described in this scan, and general support groups on Facebook that include international membership. It is unclear whether a large community of members would lead users to feel more or less comfortable when divulging personal information, particularly when considering the increased likelihood of individuals meeting offline in their local communities. Furthermore, it remains unclear whether the interactions between users differ between closed and public support groups on Facebook, where any user can view the content published by members, including the names of members themselves. For example, it remains to be seen whether users feel more comfortable divulging more information in private versus public groups or differ in their approach to communicating with other members.

65 This research provides clarity on the purposes and use of P2P support groups on Facebook for caregivers of children and youth with CCN in NB. The findings from this scan provide information that can inform health-related organizations and care providers about online P2P support groups. This work also lays a foundation for future scans of Facebook-based support groups in other Canadian provinces and beyond. Better understanding the health-related communication that takes place online between patients and caregivers may impact knowledge dissemination efforts and help to improve discourse between health care professionals and the general public. It may also highlight gaps in the system related to health literacy. Further research is needed to determine the potential impact of these groups on the health and well-being of patients and caregivers across diverse populations.