Professional Development We have created a monthly support group for our oncology nurses. Oncology nursing can be very challenging mentally, physically, and emotionally. It is especially true when we ...bear witness to the suffering and pain that an oncology patient may endure. Our nursing leadership recognized the need for additional support. We have created a monthly support group that is modeled after a research study article. The objective of this meeting is to provide safe space where our nursing staff can discuss difficult topics like how to handle grief and loss of our well- known oncology patients. Other topics discussed are how to approach the patient/families after the provider has just given bad news and ways to practice self-care. This meeting is peer led by 2 of our department's nurses and is offered virtually after clinic hours. Our goal for this meeting is to improve self-care, strengthen connections with team/colleagues, learn efficient coping practices, empower staff, and emotionally recharge. The meetings are on a volunteer basis, but we do offer compensation for those who attend. We have invited our inpatient oncology department to attend as well. We have received positive feedback from those who have attended. It is a time to reflect with colleagues and come up with strategies to stay healthy and positive.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, OILJ, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK, VSZLJ
Objective:
This study compared the utilization and outcomes of face-to-face (F2F) vestibular support groups and online support communities (OSC) for individuals with vestibular disorders.
Methods:
We ...distributed a 31-question anonymous electronic survey through the Vestibular Disorders Association (VeDA) to F2F participants, categorizing user involvement in F2F, OSCs, or both and assessed impact on medical decision-making, psychosocial benefits, and goals achieved.
Results:
The F2F cohort consisted of 97 individuals comprising primarily of non-Hispanic White women (mean age = 57 years, SD ± 14 years) with diagnoses including persistent postural-perceptual dizziness (19%), Meniere’s disease (15%), and vestibular neuritis (13%). Most participants were diagnosed by an otolaryngologist (65%) and attended F2F meetings monthly or less frequently (78%). The OSC group comprised of 551 individuals, primarily of non-Hispanic White women, but was younger in age (mean age = 50 years, SD ± 13 years). OSC participants notably engaged more, with 36% participating on a daily basis and 32% multiple times a week. F2F participants were older (mean age 57 years vs 50 years, P < .001) and more commonly referred by medical professionals (22% F2F vs 6% OSC, P < .001). Both groups had similar achieved goals, including hearing from others with the same diagnosis (84% vs 89%, P > .05) and similar impact on medical decision-making (75% vs 78%, P > .05). More F2F participants reported increased development of coping skills (79% F2F vs 69% OSC, P = .037). OSC participants typically found the group via an online search (75%), compared to 51% for F2F. OSC participants had higher daily engagement (36%) compared to F2F (1%).
Conclusion:
F2F users are older and more commonly referred by medical professionals. Despite less frequent engagement, F2F participants reported similar influences on achieved goals, medical decision-making, and impact on psychosocial benefits. These findings highlight the importance of both F2F and OSC support groups for individuals with vestibular disorders.
Objectives/Hypothesis
To formally document online support community (OSC) use among patients with vestibular symptoms and gain an appreciation for the perceived influence of participation on ...psychosocial outcomes and the impact on medical decision‐making.
Study Design
Self reported internet‐based questionnaire.
Methods
The Facebook search function was paired with a comprehensive list of vestibular diagnoses to systematically collect publicly available information on vestibular OSCs. Next, a survey was designed to gather clinicodemographic information, OSC characteristics, participation measures, perceived outcomes, and influence on medical decision‐making. The anonymous instrument was posted to two OSCs that provide support for patients with general vestibular symptoms.
Results
Seventy‐three OSCs were identified with >250,000 cumulative members and >10,000 posts per month. The survey was completed by 549 participants, a cohort of primarily educated middle‐aged (median = 50, interquartile range 40–60), non‐Hispanic white (84%), and female (89%) participants. The participants' most cited initial motivation and achieved goal of participants was to hear from others with the same diagnosis (89% and 88%, respectively). Daily users and those who reported seeing ≥5 providers before receiving a diagnosis indicated that OSC utilization significantly influenced their requested medical treatments (72% daily vs. 61% nondaily, P = .012; 61% <5 providers vs. 71% ≥5 providers P = .019, respectively). Most participants agreed that OSC engagement provides emotional support (74%) and helps to develop coping strategies (68%). Membership of ≥1 year was associated with a higher rate of learned coping skills (61% membership <1‐year vs. 71% ≥1‐year P = .016).
Conclusions
The use of OSCs is widespread among vestibular diagnoses. A survey of two OSCs suggests these groups provide a significant source of peer support and can influence users' ability to interface with the medical system.
Level of Evidence
NA Laryngoscope, 132:1835–1842, 2022
Support groups in ophthalmology may be of utmost importance for patients and caregivers. We aimed to characterise members of an online support group for patients and parents of children with ...inflammatory eye disease and assess the members' expectations and perceived benefits.
A survey based on a voluntary, anonymous web questionnaire was distributed to the members of the 'Lirot' association online support group. The questionnaire included demographic, ocular and systemic information, functional and psychosocial data, support group use patterns, expectations and perceived benefits. Analysis was done for patients and parents.
Out of 67 respondents, 43 (64%) were patients, and 24 (36%) were parents. Fifty-eight (88%) were women. The mean age of respondents was 42.9 ± 1.34 years. Anterior uveitis was the most common, and most patients had good visual acuity (<0.3 logMAR). Parents reported higher anxiety levels (p = 0.044) and a more significant effect of their child's disease on their general function (p = 0.005). Most members sought several experts' opinions, psychological treatments and alternative medicine. All members used the WhatsApp group, while only approximately half used Facebook (p < 0.001). Members' expectations were fulfilled for social support, a sense of shared experience and being able to help others, but not for receiving information (p < 0.001). All members reported being willing to recommend the group to others.
Support group participation benefited group members. We suggest that ophthalmologists encourage their inflammatory eye disease patients to use online support groups, which may significantly improve their well-being.
Background: Attending bariatric support groups is associated with higher weight loss post-bariatric surgery; however, attendance can be low due to several important barriers (e.g., time, motivation, ...distance). Incentivizing participation in desired behaviors is one strategy that has been used widely in many areas (e.g., health behaviors, work performance) but has not been used specifically to increase attendance to bariatric support groups. Methods: A single-center, prospective, pilot study was performed from January 1, 2020 - March 1, 2020 (timeline shortened drastically due to COVID-19 pandemic). Participants who were > 1-year postoperative were eligible to receive a monetary incentive ($20 per support group meeting) for attending bariatric surgery support groups. They also were asked to complete the Treatment Self-Regulation Questionnaire (TSRQ) to assess motivation at each support group they attended. Results: Attendance pre-incentive (2019) to post-incentive (2020) increased significantly (RR = 9.1, 95% CI: 4.8-19.2, p < .0001). Results from the TSRQ at baseline suggested higher intrinsic motivation (m = 4.75, sd = 1.09) than extrinsic motivation (m= 1.55, sd = 0.91), and there was no change in motivation level over time (p's > .05). Conclusions: This pilot study suggests the potential benefit of providing incentives to increase attendance to bariatric surgery support groups. It also suggests that motivation for many people participating in this study was intrinsic despite the provision of an extrinsic reward for attendance. Future research over a longer period may clarify what level and type of incentives provide the most benefit and how this impacts motivation over time.
Typically developing siblings of a child with autism spectrum disorder may be at increased risk of mental health difficulties. A support group is one approach to improve mental health outcomes for ...typically developing siblings. During support groups, typically developing siblings discuss their feelings, learn coping strategies and problem-solving skills, and develop a peer network. We conducted a randomized controlled trial comparing a support group to an attention-only social control group. Some areas of mental health improved. Autism spectrum disorder symptom severity in the sibling with autism spectrum disorder moderated effects. Findings suggest continuing to examine what areas of mental health and adjustment are improved with support groups and subgroups of typically developing siblings for whom support groups might be particularly effective.
Lay abstract
Typically developing siblings of a child with autism spectrum disorder may show mental health difficulties. A support group is one approach to help typically developing siblings. During support groups, typically developing siblings discuss their feelings, learn coping strategies and problem-solving skills, and develop a peer network. We compared a support group to participation in a similar group without a focus on the sibling with autism spectrum disorder. Some areas of mental health improved. Improvements were also impacted by autism spectrum disorder symptom severity in the sibling with autism spectrum disorder. Findings suggest continuing to examine how support groups can help typically developing siblings and for which siblings support groups might be particularly effective.
The use of solution-focused approach tools in a peer support group aimed at tackling social breakdown among teenagers - In our practice in psycho-pedagogical medical centers, we meet teenagers in ...situations of school and social breakdown. It seemed to us that group practice, supported by solution-focused approach tools, could contribute to the resumption of supportive social ties. In the field of addiction, for instance, support groups for people with similar experiences have existed for a long time. Support groups enable people to break out of isolation and support psychosocial rehabilitation. They also provide an opportunity for people in difficulty to step out of the status of «patient» and become actors in their recovery. With the experience and skills they have acquired, each member of the group will be able to pass on to others what has been useful to them in coping with their difficulties or the tools they themselves have experienced. The use of solution-focused approach intervention techniques fosters dialog about exceptions to the problem. By highlighting people's strengths and resources, and their existential concerns, the solution-focused approach promotes the building of shared solutions. This approach helps to emphasize the elements of stability in everyone's present life and also contributes to the establishment of stable relationships in the group.
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.
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