Participation In Support Groups Research Articles

Enhanced Adherence Counselling, Support Groups and Viral Load Suppression amongst HIV-Positive Adolescents in a Tertiary Health Care Facility in Cameroon

Background: Globally, HIV viral load suppression rate, which is an indirect measure of the efficacy of antiretroviral (ART) medication, is 47% and 52% in Africa. In Cameroon, the viral load (VL) suppression rate is 44.7% and poor adherence is widely documented as being responsible for the large gap in VL Suppression. Enhanced adherence counselling (EAC) sessions, and enrolment and participation in support groups are specific interventions to improve ART adherence and improve viral load suppression. Purpose: This study assesses the uptake and contribution of support groups and EAC sessions in the management of adolescents with unsuppressed VL results at Centre Hospitalier d’Essos, Yaounde. Methods: A retrospective correlational quantitative patient files review was conducted for 138 files of HIV positive adolescents aged between 10 - 19 years with HIV VL above 1000 copies/ml enrolled in care between January 2009 and December 2019. Data from the questionnaire was entered into CSPRO version 7.4. and analyzed by using SPSS version 25.0. Results: A total of 138 participants (75 females and 63 males) with a mean age of 15 ± 3 years were included in our study. Sixty-nine (50%) participants were in World Health Organization (WHO) stage I; 32.6% were in Stage II; 13.0% and 4.3% were in stages III and IV, respectively. Thirty (21.7%) had a history of tuberculosis and 76% of the adolescents were being cared for primarily by their parents. The charts of the adolescents revealed that there was an association between completion of EAC sessions in adolescents with unsuppressed VL and eventual VL suppression (R.R = 2.5; CI 0.848 - 6.162; p = 0.033). However, there was no significant association between support group enrolment and active participation, and eventual VL Suppression. Furthermore, combining EAC and support group interventions was strongly associated with eventual VL Suppression in this group of initially unsuppressed adolescents (R.R = 7.5; C.I 2.544 - 22.360; p < 0.001). Conclusion: Suppression rates were good after completion of EAC sessions and participation in support group enrolment for adolescents with a high VL. As we move towards having 95% of ART-treated adolescents achieve and maintain viral suppression, there is a need to reinforce EAC sessions and support group enrolment in ART clinics targeting this priority group.

Use of YouTube to watch health-related videos and participation in online support groups among US adults with heart disease, diabetes, and hypertension.

ObjectiveSocial media use has grown over time. However, it is unclear how people with a self-reported history of cardiovascular disease or cardiovascular disease-related risk factors such as diabetes and hypertension use social media.MethodsData from the 2020 Health Information National Trends Survey (HINTS 5, Cycle 4) were analyzed (N = 3865). Only respondents with complete data for all variables of interest were included in the analyses, resulting in 306 respondents with a heart condition, 1291 with hypertension, and 608 with diabetes. We explored associations between two dependent variables: (1) participated in an online forum or support group and (2) watched a health-related video on YouTube, and sociodemographic factors and patient-provider communication. Analyses were conducted separately by medical condition. Odds ratios, 95% confidence intervals, and p-values were calculated.ResultsIn respondents with a heart condition, hypertension, or diabetes, 5.4%, 8.4%, and 10.3% had participated in an online support group and 29.6%, 40.4%, and 36.6% had watched health-related videos on YouTube, respectively. Univariately, the odds of using online support groups was associated with younger age (vs. > = 65) in people with a heart condition and hypertension, but not diabetes. Regarding YouTube, younger age was associated with watching health-related videos across all three medical conditions, with additional gender and education associations observed in those with hypertension. There were no associations between social media use and patient-provider communication.ConclusionsThese findings may inform the selection of social media platforms for behavioral interventions depending on the intended patient population and goals (e.g. social support vs. video-based health education).

Through the lens of schizophrenia: visual hallucinations in a patient with congenital cataract – case report

Schizoaffective disorder is a chronic mental illness characterized by a combination of symptoms seen in both schizophrenia and mood disorders. It is considered a subtype of schizophrenia spectrum disorders. People with schizoaffective disorder experience various symptoms, including hallucinations, delusions, disorganized thinking, impaired social functioning, and mood disturbances, which can manifest as manic, depressive, or mixed episodes. This case report examines a 33-yearold male patient diagnosed with schizoaffective disorder who presented with negative symptoms, depressive mood, and cognitive impairments. He also experienced visual hallucinations, which represents the particularity of this case. The patient had a history of congenital cataracts, which affected his visual acuity from an early age. Despite undergoing surgery to replace the affected lenses, he developed myopia and continued to experience visual impairment. This case highlights the differential diagnosis challenges in this rare situation. It also raises questions about the relationship between visual hallucinations and somatic impairments. The patient’s successful treatment included a combination of antipsychotic, antidepressant, and mood stabilizer medications. Recommendations were provided for continued outpatient treatment, psychiatric monitoring, and participation in support groups and therapy sessions.

Telehealth adaptation of perinatal mental health mother-infant group programming for the COVID-19 pandemic.

The COVID‐19 pandemic and ensuing isolation stressed pregnant and postpartum women and their families pervasively. This necessitated addressing young families’ mental health needs while protecting both patients and providers from COVID‐19 exposure. Our experience of rapidly adapting Pregnancy, Maternal Postpartum Peer Support, and Mother–Infant Postpartum Group interventions to high‐quality telehealth modalities elucidates benefits and challenges of mother–infant dyadic treatment amidst the pandemic. This study compares 2019 in‐person and 2020 telehealth services during the period from mid‐March through mid‐December in each year. Initial program Warmline contacts were similar across years despite pandemic‐related restrictions, with 2020 program contacts surpassing the 147 unique patient outreaches during the commensurate 2019 period. Pregnancy Group enrollment remained consistent. Maternal Postpartum Peer Support Group participation increased with transition to telehealth with 27 individuals with over 100 group‐based visits in 2020. Twenty‐five mother–infant Postpartum pairs initially enrolled in the 12‐week multicomponent Mother–Infant Therapy Group (M‐ITG) during 2019 in‐person services, and 16 completed the program (36% non‐completion rate). During 2020 telehealth, 15 of 18 mother–infant pairs completed the program (17% non‐completion rate); a greater than 50% reduction in non‐completion. We further compare pre‐/post‐pandemic onset M‐ITG participant demographics, enrollment, and Edinburgh Postnatal Depression Scale (EPDS) scores.

Stress biomarkers as outcomes for support groups for people with memory loss and their caregivers (SO CALM)

AbstractBackgroundDespite the significant burden neuropsychiatric symptoms impose, rigorous research on behavioral interventions to address anxiety, apathy, and depression in people with dementia is limited, especially in those with mid‐ to late‐stage dementia. The Memory Counseling Program (MCP) at Wake Forest School of Medicine offers multi‐tiered support groups that are unique because 1) they are 10‐week, structured groups rather than open, monthly support groups and 2) they include the person living with dementia (PLWD) rather than targeting the caregiver alone.MethodWe measured quantitative biomarkers of stress to complement self‐reports at baseline, prior to initiation of support groups, with follow‐up visit within 10 days of last support group. We used paired t‐tests to examine the differences between pre‐group and post‐group measures for caregivers (Perceived Stress Scale, urinary cortisol, and allostatic load) and for PLWD (Apathy Evaluation Scale, urinary cortisol, and allostatic load). Allostatic load is the burden of chronic and repeated exposure to stress and a marker of stress resilience derived from a combination of labs, blood pressure, waist‐to‐hip ratio, and body‐mass index.ResultAmong 20 participants (1:1 caregiver and PLWD), self‐reports of Perceived Stress Scale and Apathy Evaluation Scales did not change after support group participation, however biomarkers of urinary cortisol and allostatic load decreased significantly after group participation. Among 10 caregivers, urinary cortisol changed from baseline mean 15.6µg/L (SD 12.7) to follow‐up mean 10.3 µg/L (SD 11.4, p&lt;0.05) and allostatic load from baseline mean 5.6 (SD 2.1) to follow‐up mean 4.4 (SD 1.4, p&lt;0.06). Among 10 PLWD, their mean baseline urinary cortisol 22 µg/L (SD 18.3) decreased to 9.8 µg/L (SD 8.0) at follow up and their allostatic load decreased from 5.9 (SD 2.1) at baseline to 5.1 (SD 1.5, p&lt;0.05) at follow up.ConclusionThe Wake Forest Memory Counseling program non‐pharmacologic 10‐week structured support groups may be able to reduce objective stress biomarkers for both caregivers and PLWD. Future studies should test structured support groups with an active attention control in a prospective manner.

Augmenting Traditional Support Groups for Adolescents With Type 1 Diabetes Using Instagram: Mixed Methods Feasibility Study.

BackgroundIn-person support groups have been shown to benefit adolescents with type 1 diabetes (T1D) by helping to decrease perceived diabetes burden and improving knowledge related to chronic disease management. However, barriers exist to participation in traditional support groups, including the timing and location of meetings and resources needed to attend. Adolescents are increasingly utilizing online support groups, which may provide solutions to some of the challenges faced when implementing in-person support groups.ObjectiveThe purpose of this study was to assess the feasibility and acceptability of a hybrid support group model where traditional in-person support groups were augmented with Instagram participation between monthly support group sessions for adolescents with T1D.MethodsParticipants (13-18 years old with T1D for ≥6 months) were asked to post photos each week for 3 months based on predetermined topics related to diabetes management. At the end of each month, participants attended an in-person support group to discuss their photos using the Photovoice method. Feasibility was assessed through enrollment and retention, number of Instagram posts, poststudy questionnaire, and a template analysis of the focus groups.ResultsOf 24 eligible participants, 16 (67%) enrolled in the study, with 3 dropping out prior to support group participation. The number of photos posted over 3 months ranged from 14 to 41. Among the 11 participants who completed a follow-up questionnaire, the majority of participants (6/11, 55%) reported that they very much enjoyed participating in the hybrid support group, and more than three-quarters (9/11, 82%) of participants reported that they “related to the photos posted.” Over half of participants (8/11, 73%) reported “learning something new from the photos posted,” which arose from sharing knowledge and experiences related to navigating the common challenges of diabetes management. Additionally, the use of Instagram posts helped facilitate peer discussions during the in-person support groups.ConclusionsThe novel combination of using Instagram to augment traditional in-person support groups was feasible and acceptable to adolescents with T1D. The overall satisfaction with the hybrid support group model, combined with the observed engagement with peers between support group sessions over social media, suggests that a hybrid support group model may have the potential to provide more pronounced benefits to adolescents than in-person meetings alone. Future research should investigate the use of social media as part of the support group model and examine the potential improvement of self-esteem, benefit-finding, and social support using validated tools in adolescents with diabetes.

638P Evaluating the contribution of virtual peer-led support to comprehensive prostate cancer (PCa) care: The AnCan experience

Comprehensive care for PCa patients (pts) extends well beyond selecting therapies based on available guidelines. Pts should be supported to understand the disease, diagnostics, treatment strategies suited to them, side-effects, avert morbidity and adjust diet and exercise while combating stress. We present data supporting that pt participation in a video peer-led support group is integral to attaining these goals. Peer groups are not readily accessible to pts for face to face meetings. AnCan hosts monthly virtual meeting support groups across the spectrum of malignancies and stages since 2010.

General and health-related social media use among adults with children in the household: Findings from a national survey in the United States

ObjectiveExamine predictors of social media use among a nationally representative sample of adults with children in the household. MethodsData were collected from the Health Information National Trends (HINTS) Survey from 2017 to 2020 (N = 3559). Multivariate logistic regression models assessed the association between sociodemographic variables and social networking site (SNS) use, SNS use to share health information, participation in online forum or support groups for health issues and watching health-related videos on YouTube. ResultsOlder adults and men were significantly less likely to use social media (p<.05). Non-Hispanic African American (aOR: 1.83; 95%CI: 1.30–2.57), Hispanic (aOR: 2.16; 95%CI: 1.56–2.99), and Asian (aOR: 2.82; 95%CI: 1.67–4.75) adults were more likely to watch health-related videos on YouTube. ConclusionsRacial/ethnic minorities with children in the household were more likely to seek health information on YouTube, highlighting opportunities to disseminate culturally relevant, accurate messages on the platform. Effective health communication targeted to specific demographics can help counter misinformation and promote health behavior particularly during public health emergencies. Practice ImplicationsProviders need to foster trust so that patients are comfortable to ask questions in addition to seeking information online. Providers can direct patients to credible resources to counter misinformation exposure and promote healthy behavior.

Patient Perspective: We have embraced digital technologies to support arrhythmia patients during the COVID-19 pandemic

Patient Perspective: We have embraced digital technologies to support arrhythmia patients during the COVID-19 pandemic

Revamping the delivery of cancer support, education, and wellness programming during the COVID-19 pandemic.

e24127 Background: Supportive care is considered essential to standard care for patients with a history of cancer. The interdisciplinary team at Sidney Kimmel Cancer Center (SKCC) of Thomas Jefferson University, an NCI-designated cancer center in Philadelphia, offers a robust variety of supportive care services including support groups, educational and wellness programs. SKCC includes four academic hubs across the Greater Philadelphia region. With the onset of the COVID-19 pandemic and the subsequent statewide shutdown of services, SKCC quickly pivoted to virtual offerings, to address patients’ supportive care needs. Recent research has shown patients self-reporting higher incidence of anxiety and loneliness due to the pandemic. Direct patient feedback identified programs of greatest need, the preferred times and format. Methods: At the beginning of the pandemic SKCC offered a program “Coping with Cancer and Covid-19: as You Navigate Cancer Treatment.” This program helped patients understand their risk of COVID-19 and provided emotional support as patients and caregivers began facing loneliness. Additional virtual offerings included Mindfulness Sessions, Yoga, Stretching for Stress Relief, Healing through Humor. SKCC began evaluating the impact of the programming beginning in June 2020. Attendees completed surveys evaluating the presentation, their level of psychological distress, perceived quality of life, and feelings of hope, loneliness, and connection. Participants were asked if they would attend another program and were asked to rate the program on a Likert scale. Results: In 2019 SKCC offered 273 programs and attracted 984 participants. Only 90 of the 984 participants attended virtually prior to the pandemic. Since the start of the pandemic, SKCC has hosted 334 programs, all virtually, with 3,346 participants. Surveys were sent electronically and completed immediately after the completion of all support programs offered at SKCC. 40% of program participants’ completed an evaluation form and 94% rated the program exceptional or very good. Overall, 88% of participants in virtual wellness, support groups and educational programs indicated they would attend another program offered by SKCC. Conclusions: Virtual supportive care offerings have engaged more patients and caregivers than ever across SKCC hubs and have proven an effective means to continue to support patients during the pandemic. It is important to continue to evaluate and create meaningful programs to match the ongoing needs of patients and caregivers.[Table: see text]

Needs of caregivers of children with cerebral palsy: A literature review

Background and objective: Cerebral palsy (CP) is the most common motor disability that affects two to three children per 1000 worldwide. Caregivers are most often parents of children with CP (CCP) who are responsible for providing primary care. Caregivers of CCP face multiple challenges, such as the manifestation of the disease and difficulty in providing daily care. They also have psychological, social, financial, and informational needs. These needs may be met through participation in support groups. The objective of this paper is to identify the needs of caregivers of CCP and how participation in support groups may meet those needs.Methods: A literature review was conducted to identify relevant articles on the needs of caregivers of CCP. Eleven articles published between 2008 and 2018 on caregivers’ needs were retrieved and their quality was assessed using the Mixed Methods Appraisal Tool. The data collected were analyzed to identify key themes related to caregivers’ needs.Results: Four key themes of caregivers’ needs were identified: informational, financial, social, and psychological. Support groups may help caregivers to meet their needs. As caregivers receive their needed support, they will able to improve their role in providing a high quality care for their children.Conclusions: Caregivers of CCP have informational, financial, social, and psychological needs which may be met by membership in support groups. Support groups may potentially increase caregivers’ knowledge, receive the needed support, decrease their level of stress, and improve their quality of life.

Mindfulness at Methodist-A Prospective Pilot Study of Mindfulness and Stress Resiliency Interventions in Patients at a Tertiary Care Medical Center.

Individuals with chronic medical conditions like cancer often experience heightened stress levels that can impact medical decision-making. The aim of this study was assess the impact of mindful stress-reduction interventions in cancer patients and support group participants (which included current and former cancer patients and their caregivers). A pilot study was conducted in which participants were provided a mindful stress-reduction intervention to determine whether they reduced stress, anxiety, and communication issues. Participants were provided a one-hour mindful stress-reduction intervention by a licensed physical therapist. Surveys were given to participants immediately before and after, and again 7-days after the intervention. Perceived stress was ascertained by asking participants: “Which emotional/mental state do you most frequently find yourself in?” Anxiety and communication abilities were measured using Neuro-QoL™ Anxiety and Communication v.1 instruments. Fifty-nine participants with a mean age of 60.6 years completed the study. Of these, 30.5%, 6.8%, 23.7%, and 39% were diagnosed (or were a caregiver to someone diagnosed) with pancreas, liver, breast, or unknown cancers, respectively. The surveys showed that participants’ perceived stress scores (p < 0.001), anxiety levels (p = 0.0067), and pain scores (p < 0.0001) were reduced after the mindful stress-reduction intervention. Larger studies with control groups are needed to confirm the interventions’ benefits.

Does a peer social support group intervention using the cares skills framework improve emotional expression and emotion-focused coping in paramedic students?

There is growing concern for the health and wellbeing of paramedic students who are required to undertake work integrated learning (WIL) in the ambulance setting to become a registered paramedic. Paramedic culture, barriers to help seeking, and difficulty in accessing peer support is limiting their ability to express emotions and cope with workplace stress. This study aimed to examine whether participation in a peer social support group, using the CARES skills framework, changed paramedic students’ emotional expression and emotion-focused coping.A convenience sample of seventy-eight participants were recruited from a paramedic program at a single regional university in Australia. Due to small participant numbers third year students were assigned to the intervention group (n = 44) and second year students were assigned to the control group (n = 34). The intervention group received training on how to undertake a peer social support group using the skills embedded in the CARES framework and were encouraged to meet every two weeks over a twelve-week period. All participants completed online surveys consisting of the DASS-21 stress subscale, General Help Seeking Questionnaire, Emotional Approach Coping Scale, Emotional Expressivity Scale and Multidimensional Scale of Perceived Social Support in week 1 and in week 12.Findings suggest that peer social support participation significantly increased emotional expression and emotion-focused coping when compared to the control group. Furthermore, this intervention significantly reduced participants’ reliance upon help seeking without a significant increase in external social support. This is the first known study to investigate the role of peer social support amongst paramedic students, and the findings provide new information on how to help individuals cope with the stressors of working in the ambulance setting. Future studies should investigate whether the positive effects of peer social support are consistent over time and focus on minimising sampling issues.

Impacts of online support groups on quality of life, and perceived anxiety and depression in those with ME/CFS: a survey

ABSTRACT Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition that can negatively affect physical and mental health [1,2]. People with ME/CFS report lower perceived levels of social support, which further exacerbate challenges with mental health and has been linked to a higher prevalence of depression and anxiety in this population [3]. There are many mental health benefits associated with participation in in-person support groups; however, it is unknown if these benefits translate to online support groups [5]. Purpose To examine the perceived impacts of participation in online support groups on depression, anxiety and quality of life among people with ME/CFS. Results Responses (n = 76) to an online survey indicated positive and negative experiences with participation in online support groups. Positive experiences included a sense of belonging, validation, supportive friendships and feelings of positively impacting others. Negative experiences included jealousy, decreased hope and optimism and disagreement regarding treatment strategies. Conclusion Participation in online support groups was believed to decrease perceived feelings of depression and increase the quality of life in those with ME/CFS. No significant impacts on anxiety were found. Overall, participants reported engagement in online support groups to be a positive experience.

Participation in pulmonary hypertension support group improves patient-reported health quality outcomes: a patient and caregiver survey.

Support group participation has been shown to be effective in many chronic medical conditions. The evidence for integrating support group into pulmonary hypertension care and its effect on quality of life, physical and psychological well-being is limited. We sought to assess the effect of support group participation on quality of life in patients diagnosed with pulmonary hypertension and their caregivers. The emPHasis-10 questionnaire (a tool validated for quality of life assessment in pulmonary hypertension) was used to evaluate the effect of support group participation. Additional demographic and health-related quality measures were examined. Results showed that 165 subjects were enrolled in the study; 122 (74.4%) were patients with pulmonary hypertension, 41 (25.0%) were their caregivers, and 2 (0.02%) did not respond. The cohort was predominantly female (n = 128, 78%), Caucasian (n = 10, 61%), and the principal self-reported classification of pulmonary hypertension was World Health Organization Group 1 (n = 85, 51.8%) and the self-reported New York Heart Association Functional Class was II and III (n = 43, 57.3%). Most participants (n = 118, 71.5%) attended support groups and of them, a majority (n = 107, 90.6%) stated it helped them. There was no difference in quality of life as assessed by emPHasis-10 scores with support group participation (median score 30 vs 32, p = 0.387). There was self-reported improvement in understanding condition better including procedures such as right heart catheterization, medication compliance, and confidence in self-care (p < 0.05). Using multivariate logistic regression, baseline variables that were independently associated with emPHasis-10 scores for the entire cohort included knowledge of New York Heart Association Functional Class (odds ratio: 1.919, 95% CI: 1.004–3.67, p = 0.04) and greater distance traveled to visit pulmonary hypertension physician (odds ratio: 1.391, 95% CI: 0.998--1.94, p = 0.05). In conclusion, support group participation does not improve quality of life as assessed by emPHasis-10 scores but improves other meaningful health-related quality outcomes.

504 Creative Aftercare Program Amidst Coronavirus Pandemic

IntroductionCoronavirus disease presented itself early in 2019 inducing a considerable degree of fear, worry, and unknown throughout the United States. National and State governed laws imposed social distancing measures, quarantining citizens, and isolating infected persons. Apart from its physical impact, COVID-19 pandemic has brought numerous changes to people’s lives affecting people both physically and psychologically. A key component of quality of life of burn survivors consist of maintaining a long-term burn center connection through support groups. Our burn center developed a virtual format for aftercare to provide psychological support during the pandemic.MethodsRegular attendees and new burn survivors were contacted by the aftercare specialist from an American Burn Associated verified burn center. Participants were surveyed on the best mode of contact and current addresses were obtained. “Happy Mail” was mailed to support group participants 3 times/month. Items included in these packages ranged from motivational sayings, gift cards, essential oils, candies, art projects, and reminders to log onto the virtual support groups. The gift packages also included a mental health check-in icebreaker. These gift packages took the place of our in-person support groups and contained all materials needed to engage and guide participation in the virtual monthly support group. Participants were then invited to join a social media support group for our local burn center.ResultsBurn survivors continued to receive quality psychosocial support to cope with and process feelings as well as validate emotions. Attendees regularly expressed gratitude in receiving “Happy Mail” as it brought a feeling of connectiveness to a group of burn survivors who rely on each other for peer support. The gift packages also served as a reminder of the upcoming virtual aftercare support groups as our attendance did not see a decline at monthly meetings.ConclusionsOur experience suggests that a method of offering “Happy Mail” as part of a curriculum to augment virtual aftercare can be a model to adapt to the emotional support burn survivors and their family members need during the pandemic.

Coping with Dementia Clinical Trial Interruption: Virtual Support Group for Participants and Study Partners

<h3>Introduction</h3> Biopsychosocial benefits of participation in longitudinal research – increased access to specialized physicians, frequent medical supervision, social support from research staff, a sense of purpose and routine, etc. – have been documented and are valuable contributors to patient wellbeing. An important but lesser-examined consequence of the COVID-19 pandemic is the sweeping disruption of ongoing clinical trials – in particular, those investigating the safety and efficacy of disease-modifying therapeutics for dementia, as older adults have been disproportionately affected by the pandemic. <h3>Methods</h3> To address the potential negative outcomes of clinical trial interruption, we initiated weekly virtual clinician-led support groups: one for dementia clinical trial participants and one for their study partners. Each group met once weekly for 5 weeks via Zoom, and content included coping strategies, sharing resources, voicing challenges, and answering questions about the future. <h3>Results</h3> According to feedback gathered anonymously, support group participants found the aspect of listening to and sharing experiences to be highly useful and overall felt that participation in the group had helped them cope with the negative effects of the pandemic. <h3>Conclusions</h3> The positive impact and feedback gathered from the pilot of this support group can help to inform our understanding of the complex ways in which longitudinal clinical trials participation affects the lives of participants and their families, and how best we can support them even after the research has paused or ended.

Addressing Phantom Pain Through Occupational Participation: A Qualitative Study of Support Group Participants.

The purpose of this qualitative phenomenological study was to explore the adaptation process of support group participants who are survivors of lower limb amputation (LLA) experiencing phantom limb pain (PLP). The study followed a qualitative, descriptive phenomenological design. Ten adult participants with LLA met inclusion criteria and through semi-structured interviews shared their lived experience. A qualitative descriptive methodology was used to analyze the data collected from interview transcriptions. Analysis involved coding and theme development. Three themes emerged: PLP interrupted but does not prevent participation, adapting to PLP allowed for continued participation in meaningful occupations, and education to promote self-management of PLP. Themes identified highlight the importance of social support and early education on PLP to facilitate the adaption process and promote occupational participation. The finding underscores the value of empowering survivors to self-manage pain through their own personal and unique ways.

Natural Language Processing-Based Virtual Cofacilitator for Online Cancer Support Groups: Protocol for an Algorithm Development and Validation Study.

BackgroundCancer and its treatment can significantly impact the short- and long-term psychological well-being of patients and families. Emotional distress and depressive symptomatology are often associated with poor treatment adherence, reduced quality of life, and higher mortality. Cancer support groups, especially those led by health care professionals, provide a safe place for participants to discuss fear, normalize stress reactions, share solidarity, and learn about effective strategies to build resilience and enhance coping. However, in-person support groups may not always be accessible to individuals; geographic distance is one of the barriers for access, and compromised physical condition (eg, fatigue, pain) is another. Emerging evidence supports the effectiveness of online support groups in reducing access barriers. Text-based and professional-led online support groups have been offered by Cancer Chat Canada. Participants join the group discussion using text in real time. However, therapist leaders report some challenges leading text-based online support groups in the absence of visual cues, particularly in tracking participant distress. With multiple participants typing at the same time, the nuances of the text messages or red flags for distress can sometimes be missed. Recent advances in artificial intelligence such as deep learning–based natural language processing offer potential solutions. This technology can be used to analyze online support group text data to track participants’ expressed emotional distress, including fear, sadness, and hopelessness. Artificial intelligence allows session activities to be monitored in real time and alerts the therapist to participant disengagement.ObjectiveWe aim to develop and evaluate an artificial intelligence–based cofacilitator prototype to track and monitor online support group participants’ distress through real-time analysis of text-based messages posted during synchronous sessions.MethodsAn artificial intelligence–based cofacilitator will be developed to identify participants who are at-risk for increased emotional distress and track participant engagement and in-session group cohesion levels, providing real-time alerts for therapist to follow-up; generate postsession participant profiles that contain discussion content keywords and emotion profiles for each session; and automatically suggest tailored resources to participants according to their needs. The study is designed to be conducted in 4 phases consisting of (1) development based on a subset of data and an existing natural language processing framework, (2) performance evaluation using human scoring, (3) beta testing, and (4) user experience evaluation.ResultsThis study received ethics approval in August 2019. Phase 1, development of an artificial intelligence–based cofacilitator, was completed in January 2020. As of December 2020, phase 2 is underway. The study is expected to be completed by September 2021.ConclusionsAn artificial intelligence–based cofacilitator offers a promising new mode of delivery of person-centered online support groups tailored to individual needs.International Registered Report Identifier (IRRID)DERR1-10.2196/21453

Support group participation among people living with human immunodeficiency virus in tertiary hospitals in Enugu: Benefits, perceived barriers, and factors associated with participation

Background: Support groups have been advocated in the care of patients with HIV and are integrated into HIV care and treatment programs. Objectives: This study aimed to assess in patients living with HIV, their awareness of support groups, knowledge of its benefits, and perceived barriers to their participation. Materials and Methods: A cross-sectional descriptive study was conducted on 430 consenting adult patients being managed for HIV/AIDS at the University of Nigeria Teaching Hospital Ituku-Ozalla, Enugu. Patients were recruited consecutively over 4 weeks, and information on their sociodemographic data, knowledge, and membership of HIV support groups was obtained using a structured interviewer-administered questionnaire. Data were analyzed using Statistical Packages for Social Sciences (SPSS) version 23. The level of significance was < 0.05, and the confidence interval was 95%. Results: The mean age of the participants was 42.8 ± 6.58 years and 70.5% were female. A diagnosis of HIV for more than 10 years was reported in 141 participants (32.8%). While 260 (60.5%) were aware of support groups, only 41 (15.8%) belonged to a support group. While 84 (21.6%) did not participate because support group meetings were hard to find where they live, 79 (20.3%) could not attend because of their job. HIV diagnosis for more than 10 years was significantly associated with higher participation in support groups (P = 0.005). Conclusion: Participation in support groups was low in our patients and several barriers were reported, with the most common being poor accessibility to support group meetings.