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Caregiving can affect people of all ages and can have significant negative health impacts on family caregivers themselves. Research has shown that social support acts as a buffer against many negative health impacts. A common source of social support is support groups. Although traditionally, these groups were conducted in a face-to-face setting, the advent of the internet, social media applications, and the smartphone have seen online support groups (OSGs) develop as a space where many caregivers seek support. The number of OSGs has increased exponentially, but there is no clear consensus on what factors or characteristics of OSGs contribute to social support development within them or what types of OSGs are available to family caregivers. This study aimed to conduct a scoping review to contribute to the understanding of the types and characteristics of OSGs for family caregivers. Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines, the CINAHL, PsychInfo, Psych Articles, Social Sciences, Communication Source, Medline, and Web of Science databases were searched for studies (caregiver focused, adults aged 18 years or older, online social support groups, caring for a living person, peer-reviewed journal publications on empirical research). In total, 19 studies were included in the review. The research questions were (1) what type of social support groups are online for adult family caregivers, (2) what the communication mediums and characteristics of these OSGs are, and (3) what psychosocial or other factors make OSGs successful or unsuccessful for participants. In response to the first research question, we found that the majority of OSGs took place on public text-based forums and were illness specific. Where demographics were reported, participants were predominately women, White, and working with university-level education. There were a variety of caregiving relationships. For the second research question, the most common communication medium found was text-based communication, with the use of emojis, photos, and GIF (Graphics Interchange Format) files as part of these exchanges. Most frequently, the OSGs were asynchronous with a degree of anonymity, not time-limited by the frequency of contact or duration, and moderated by peer or professional moderators or facilitators. Results for the third research question explored the overarching categories of safe communication and engagement and group management. These described successful OSGs as having a focus on similar others with shared lived experiences communicated in a nonjudgmental space overseen by trained peer or professional facilitators. There are several key considerations for OSGs to be successful for family caregivers. A general recommendation for practitioners is to give importance to building active moderation and multifaceted structures of support to meet different levels of caregiver needs and the ability to engage.

Background: Loneliness, social isolation, and feeling disconnected from society are commonly experienced by parents of children with rare diseases and are, among others, important reasons for special supportive care needs. Social networking platforms are increasingly used for health communication, information exchange, and support. In the field of rare pediatric diseases, qualitative studies have shown that Facebook online support groups are utilized by and beneficial for persons affected by rare pediatric diseases. Nonetheless, the extent of this usage has not been investigated. Objective: This study aims to provide a comprehensive quantitative analysis of the extent of Facebook usage as a tool for rare pediatric disease support groups and to explore factors that influence a disease’s representation on Facebook. These results potentially offer important insights for future public health initiatives and give direction to further research that can give much needed support to parents of children with rare diseases. Methods: We determined rare pediatric diseases using the inventory of the online portal Orphanet. Facebook support groups were identified by searching 5 synonymous disease descriptions using the group category search bar. Disease- and group-describing parameters were statistically analyzed using standard descriptive statistical methods. Results: 6398 Facebook support groups, representing 826 diseases (19.5% of all searched diseases), were found. 69% are private groups. Group type, size, activity (sum of posts, comments, and reactions calculated by Facebook), new memberships, and language varied largely between groups (member count: minimum 1, maximum 23,414; activity last 30 days: minimum 0, maximum 3606). The highest percentage of awareness and information groups was found for teratogenic diseases (18/68, 26%). The odds of finding a Facebook group increased according to the level of information available about the disease: known prevalence (odds ratio [OR] 3.98, 95% CI 3.39-4.66, P<.001), known disease type (OR 3.15, 95% CI 2.70-3.68, P<.001), and known inheritance mode (OR 2.06, 95% CI 1.68-2.52, P<.001) were all associated with higher odds of finding a Facebook group, as was dominant compared to nondominant inheritance (OR 2.05, 95% CI 1.74-3.42, P<.001). The number of groups per disease increased with higher prevalence. Conclusions: Facebook is widely used as a tool for support groups for rare pediatric diseases and continues to be relevant. Two-thirds of the groups are private groups, indicating group participants’ need for privacy, which should be further explored. The advantages and limitations of Facebook as a tool for support groups in the field of rare diseases should be further investigated as it will allow health professionals to use Facebook more meaningfully in their counseling and guidance of affected individuals and their family members.

BackgroundAs social media are evolving rapidly online support groups (OSG) are becoming increasingly important for patients. Therefore, the aim of our study was to compare the users of traditional face-to-face support groups and OSG.Patients and methodsWe performed a cross-sectional comparison study of all regional face-to-face support groups and the largest OSG in Germany. By applying validated instruments, the survey covered sociodemographic and disease-related information, decision-making habits, psychological aspects, and quality of life.ResultsWe analyzed the complete data of 955 patients visiting face-to-face support groups and 686 patients using OSG. Patients using OSG were 6 years younger (65.3 vs. 71.5 years; p < 0.001), had higher education levels (47 vs. 21%; p < 0.001), and had higher income. Patients using OSG reported a higher share of metastatic disease (17 vs. 12%; p < 0.001). Patients using OSG reported greater distress. There were no significant differences in anxiety, depression, and global quality of life. In the face-to-face support groups, patient ratings were better for exchanging information, gaining recognition, and caring for others. Patients using OSG demanded a more active role in the treatment decision-making process (58 vs. 33%; p < 0.001) and changed their initial treatment decision more frequently (29 vs. 25%; p < 0.001).ConclusionsBoth modalities of peer support received very positive ratings by their users and have significant impact on treatment decision-making.Implications for cancer survivorsOlder patients might benefit more from the continuous social support in face-to-face support groups. OSG offer low-threshold advice for acute problems to younger and better educated patients with high distress.Trial registrationwww.germanctr.de, number DRKS00005086

Why did you do this work?The Patient Navigator role was established as the first of its kind in Scotland in 2023, and continues to run to date. The Navigator provides holistic care that addresses physical, mental, financial and social needs of families. By listening to these families, the Navigator can identify barriers to care and offer guidance that is tailored to each family’s journey, and signpost to connect families to relevant healthcare professionals, support groups and third sector organisations for education, research, housing and financial advice.The Navigator collaborated with the health board, attending acute wards and outpatient clinics, raising awareness of rare conditions amongst healthcare professionals. Referrals from various sectors were made to ensure families received timely access to information and resources. Additionally, the role focused on service improvement by gathering feedback from families and liaising with services to enhance the patient experience. Continuous development of the Patient Navigator role aimed to bridge gaps in care, support, and services for families affected by rare conditions. We aimed to show that this role is busy and effective, and should be considered by other centres caring for those with rare conditions.What did you do?The Navigators patient logs were reviewed, including number of contacts families had with the navigator, reasons for contacting and what information was given by the Navigator. Feedback questionnaires were offered to families and also reviewed.What did you find?From the origin of the role, the Navigator has had 560 interactions with 201 families, an increase from 369 interactions with 140 families in its first 12 months. Contact methods ranged from face to face, email or phone depending on the family needs. The number of contacts with each family ranged from 1-24, with a median of 2 contacts per family. The patients ranged from neonates to adults, with a mean age of 3.6 years. Of the 201 patients that had contact with the navigator, 28 are undiagnosed. A wide variety of rare conditions were encountered, prevalence ranging from 1 in 2000, to one of a few world-wide.Issues managed included offering general support and signposting to support groups, linking to healthcare staff and psychological support, assisting with seeking funding and educational support, linking with other families and end of life care. Resources developed included holistic needs assessment, contact log of healthcare professionals, database for resources for information for families on finance, housing, activities, mental health and wellbeing, refugees, sibling support and charity contacts.Feedback questionnaires reported that 96% of respondents felt the information received was helpful and 100% reported that they knew who to contact if further support was needed.What does it mean?The Navigator has proved a busy and effective role with excellent feedback. Families often contacted the Navigator feeling lost and helpless, and were offered diverse support. This role should be considered by other centres caring for those affected by rare conditions.

Why did you do this work?Allergic disorders impose a significant global health burden, affecting children and their families.1 Support groups can be instrumental in helping parents navigate the complexities of managing paediatric allergies. Our aim was to establish a Paediatric Allergy Parent Support Group (PAPSG) at a District General Hospital and assess its initial impact.What did you do?In April 2024, we shared a survey with parents of children with allergies via flyers with QR code links alongside clinic letters. This survey gauged interest in joining PAPSG and collected data on the types of allergies managed. Based on the responses, we held our first face-to-face session in July 2024 for parents titled ‘Managing Children with Allergies During Summer Holidays.’ 11 parents attended this session and completed feedback forms evaluating their knowledge before and after the session on topics such as travel documentation, medication management, and practical considerations when eating out or traveling. Our feedback also assessed the usefulness of the presentations and ideas for improvement and topics for future sessions.What did you find?38 parents filled in our initial survey expressing interest in joining the support group over 2 months. The parents had children with ages 4 months-16 years. The most common allergies for their children were food(42%), pets(24%) and aeroallergens(24%). The majority(89%) were not previously part of any support group, highlighting the need for a local parent support group.The parents who attended the first face-to-face session found it helpful, supportive and had many suggestions for others on managing allergies while travelling. The feedback demonstrated substantial improvements in their confidence across the 3 topics. Understanding travel documentation increased from an average score of 4.54 (SD=3.45) before the session to 8.82 (SD=1.70) after the session. Knowledge about carrying medications improved from 5.00 (SD=3.33) to 8.73 (SD=1.48), and practical considerations when eating out increased from 6.27 (SD=2.77) to 8.91 (SD=1.68). The presentations were highly rated, with scores 9.55 out of 10. Parents also had a list of suggestions for future topics.What does it mean?There is a huge unmet need for local parent support group for children with allergies. The group provides a platform for parents to share experiences, gain knowledge, and receive support. Our first session demonstrated significant improvements in parental confidence with high level of engagement and positive feedback. We aim to work with parent representatives in planning regular sessions for the future.ReferenceStatistics and Figures. Allergy UK | National Charity. http://allergyuk.org [Accessed 2nd August 2024].

Siblings of persons with neurodevelopmental conditions (NDCs) have increased risk of poorer psychosocial functioning. This systematic review evaluated quantitative and qualitative evidence on sibling mental health and wellbeing outcomes following psychosocial interventions and the risk and protective factors associated with post-intervention outcomes. From 2025 identified studies published from 1991 to 2022 across ten databases, 24 studies were included. The largest immediate post-intervention improvements were in self-esteem, social wellbeing and knowledge of NDCs. The most sustained improvements in intervention groups at follow-up periods were in emotional and behavioural adjustment and NDC knowledge. There were positive, but small, differences in favour of the intervention groups on knowledge of NDCs, self-esteem, coping and the sibling relationship as compared to waitlist control groups. Psychosocial interventions for siblings are heterogeneous, and more data, including consideration of unique family circumstances, are needed to improve reporting and replicability, to measure effectiveness and tailor necessary supports.

Online support groups provide opportunities for individuals affected by HIV and AIDS to seek information, advice, and support from peers. However, whether and how engagement with online support groups helps individuals affected by HIV and AIDS remains unclear, as does the nature of the evidence on this topic. This scoping review sought to explore whether engagement with HIV and AIDS-related online support groups benefits members in terms of psychosocial well-being and illness management, whether members experienced any negative aspects of these groups, and what types of social support are exchanged within HIV and AIDS-related online support groups. A scoping review of English-language articles (including both qualitative and quantitative studies) was undertaken using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. The databases searched included MEDLINE, PubMed, EMBASE, CINAHL, PsycINFO, CENTRAL (Cochrane Register of Controlled Trials), and Scopus. Key findings were synthesized using a narrative and thematic approach. A total of 22 papers met the inclusion criteria from an initial pool of 3332 abstracts. These papers included 23% (5/22) quantitative studies, 9% (2/22) mixed methods studies, and 68% (15/22) qualitative studies published between 2007 and 2019. Cross-sectional evidence suggests that engagement with HIV and AIDS-related online support groups is empowering for members and may lead to a range of psychosocial benefits. Furthermore, qualitative evidence suggests that these groups provide an opportunity to connect with similar people and share experiences. This can help improve self-worth, reduce stigma, facilitate improved illness management, and gain greater confidence when interacting with health professionals. However, online support groups are not without their limitations as qualitative evidence suggests that users may encounter examples of interpersonal conflict between members as well as be exposed to challenging content. Finally, HIV and AIDS-related online support groups are avenues through which individuals can solicit support, most commonly informational or emotional. HIV and AIDS-related online support groups may have some benefits for members, particularly in terms of providing social support. There is a need for a systematic review of this literature that includes an assessment of the methodological quality of the available evidence.

Background Loneliness is a common experience following stroke. Stroke support groups may protect against loneliness, but little is known about how these groups exert their influence. This research drew upon current theorising on the role of groups for health and explored i) social identification as a potential mechanism for overcoming loneliness, and ii) psychological group resources (support, control, self-esteem), and functional group processes (clear goals, group autonomy, member continuity) which might structure social identification. Methods Five hundred seventy-nine stroke survivors from 84 Stroke Association support groups across the UK completed a cross-sectional survey measuring: support group identification; psychological resources (given and received social support, control, self-esteem, identity centrality); functional processes (goal clarity, group autonomy, member continuity); and loneliness (3-item UCLA Loneliness Scale). Results Greater support group identification was associated with reduced loneliness (β = -0.45, p  < 0.001). Given (β = 0.17, p  = 0.001) and received (β = 0.10, p  < 0.001) social support, goal clarity (β = 0.17, p  = 0.002), and group member continuity (β = 0.19, p  < 0.001) were all associated with greater support group identification. Conclusions Social identification with the group may be a mechanism by which stroke support groups alleviate loneliness, potentially through facilitating attendance, mutual social support and the development of collective goals. Further research should explore how these processes influence social identification in newly formed groups, where social identity has not yet been established.