The clinical effectiveness of the Mind/Body Program for Infertility on wellbeing and assisted reproduction outcomes: a randomized controlled trial in search for active ingredients.

STUDY QUESTION: Does the Mind/Body Program for Infertility (MBPI) perform better, due to certain distinctive elements, than a partly matched support group in improving the wellbeing and medically assisted reproduction (MAR) outcomes of women with elevated distress levels in a clinical setting? SUMMARY ANSWER: While robust enhancements occurred in the wellbeing overall, the cognitive behavioural and formalized stress management elements of the MBPI allowed a significantly stronger improvement in trait anxiety, but not in other mental health and MAR outcomes, compared with a support group. WHAT IS KNOWN ALREADY: Mind-body psychological programmes adjacent to MAR have been found to improve women's mental states and possibly increase chances of pregnancy. However, not enough is known about the programme's effectiveness among patients with elevated distress levels in routine clinical settings, nor is it clear which of its particular ingredients are specifically effective. STUDY DESIGN, SIZE, DURATION: A pre-post design, single-centre, randomized controlled trial was performed between December 2019 and October 2022 (start and end of recruitment, respectively). The sample size (n = 168) was calculated to detect superiority of the MBPI in improving fertility-related quality of life. Randomization was computer-based, with random numbers concealing identities of patients until after allocation. PARTICIPANTS/MATERIALS, SETTING, METHODS: The trial was conducted at a large university teaching hospital. A total of 168 patients were randomly assigned to the mind-body (MBPI) group (n = 84) and the fertility support (FS) control group (n = 84). Patients received a 10-week, 135-min/week group intervention, with the FS group following the same format as the MBPI group, but with a less restricted and systematic content, and without the presumed effective factors. The number of patients analysed was n = 74 (MBPI) and n = 68 (FS) for post-intervention psychological outcomes, and n = 54 (MBPI) and n = 56 (FS) for pregnancy outcomes at a 30-month follow-up. MAIN RESULTS AND THE ROLE OF CHANCE: Significant improvements occurred in both groups in all psychological domains (adjusted P < 0.001), except for treatment-related quality of life. Linear mixed-model regression analysis did not reveal significantly greater pre-post improvements in the MBPI group than in the FS group in fertility-related quality of life (difference in differences (DD) = 4.11 [0.42, 7.80], d = 0.32, adjusted P = 0.124), treatment-related quality of life (DD = -3.08 [-7.72, 1.55], d = -0.20, adjusted P = 0.582), infertility-specific stress (DD = -2.54 [-4.68, 0.41], d = -0.36, adjusted P = 0.105), depression (DD = -1.16 [3.61, 1.29], d = -0.13, adjusted P = 0.708), and general stress (DD = -0.62 [-1.91, 0.68], d = -0.13, adjusted P = 0.708), but it did show a significantly larger improvement in trait anxiety (DD = -3.60 [-6.16, -1.04], d = -0.32, adjusted P = 0.042). Logistic regression showed no group effect on MAR pregnancies, spontaneous pregnancies, or live births. LIMITATIONS, REASONS FOR CAUTION: The follow-up only covered MAR-related medical outcomes and no psychological variables, and their rates were not equal in the two groups. Biological factors other than age, aetiology, and duration of infertility may have confounded the study results. Loss to follow-up was between 5% and 10%, which may have led to some bias. WIDER IMPLICATIONS OF THE FINDINGS: The psychologically and medically heterogeneous sample, the normal clinical setting and the low attrition rate all raise the external validity and generalizability of our study. The MBPI works not only in controlled conditions, but also in routine MAR practice, where it can be introduced as a cost-effective, low-intensity psychological intervention, within the framework of stepped care. More studies are needed to further identify its active ingredients. STUDY FUNDING/COMPETING INTEREST(S): The authors received no financial support for the research, authorship, and/or publication of this article. The authors have no conflict of interest to disclose. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov NCT04151485. TRIAL REGISTRATION DATE: 5 November 2019. DATE OF FIRST PATIENT'S ENROLMENT: 15 December 2019.

The role of peer support in recovery among clients with mental illness attending the psychiatric service in a tertiary hospital in Malaysia: a qualitative study.

BACKGROUND: The understanding that mental health recovery is a personal and subjective experience informs mental health policies in many countries. However, most of the populations in these studies are from the West, limiting their applicability in Asia. Peer support in mental health refers to helping and mentoring people who have overcome similar obstacles. Despite being proven to be effective in promoting recovery, little is known about its use in Malaysian psychiatric patients. This study aims to explore the participants' perspectives on their concept of recovery and how the peer support group (PSG) aid them to achieve recovery. METHODOLOGY: This study was conducted on clients with mental illness who attended the PSG provided by the Community Psychiatry and Psychosocial Intervention Unit in National University Malaysia Medical Centre. A qualitative generic inductive approach was employed in this thematic exploratory study. Purposive sampling was the method used to collect the data for this thematic exploratory study. In-depth interviews of 11 study participants were audio recorded and transcribed verbatim. Data were analyzed using Braun and Clarke (2006) descriptive thematic analysis method. RESULTS: The findings of this study highlighted six key themes; three pertaining to the participants' perspectives on the meaning of recovery (1. Gaining self-reliance and social inclusion, 2. Personal growth and improved life circumstances in recovery, and 3. Symptoms improvement) and another three pertaining to how the peer support group aids recovery (1. Empowerment and growth through peer support, 2. Promoting well-being, 3. Social connection and support). CONCLUSION: The findings of this study provide valuable insights into the perspectives of psychiatry clinic patients enrolled in PSG on the concept of recovery and the role of such groups in their recovery journey. The findings demonstrated that the PSG complemented the participants' perspectives on recovery, reinforcing the notion that a comprehensive and person-centered approach to mental health services is essential for successful and sustained recovery outcomes.

Small programs, big challenges: Reimagining the evaluation of clinical teaching in genetic counseling.

Within the health professions education system, a significant proportion of teaching and learning occurs in the clinical setting. As such, the need to measure effective teaching for accreditation standards, faculty development, merit pay, academic promotion, and for monitoring the safety of the learning environment has led to numerous universities developing instruments to evaluate teaching effectiveness in this context. To date; however, these instruments typically focus on the student perspective, despite evidence demonstrating that student evaluations of teaching (SETs) lack correlation with learning outcomes and are not a true measure of teaching effectiveness. This issue is further exacerbated in small health professional training programs, such as genetic counseling, where clinical teachers may only supervise 1-3 students per year. As a result, not only are SETs more confounded due to small sample sizes, but a direct conflict exists between respecting learner anonymity and providing timely and relevant feedback to faculty. In such contexts, even using SETs to evaluate the nature of the learning environment may be unreliable due to student concerns about identifiability and fear of retaliation for unfavorable evaluation. This paper will review the literature regarding SETs, barriers to this process within the clinical setting, and the unintended downstream consequences. Options for addressing issues related to the use of SETs will be considered, with particular focus on the process of reflection and the use of teaching consultations or peer support groups as a means to improve teaching effectiveness in this learning environment.

Positive effects of speech and language therapy group interventions in primary progressive aphasia: A systematic review.

BACKGROUND: Primary progressive aphasia (PPA) is a neurodegenerative condition characterised by a prominent and progressive deterioration in language abilities, which significantly impacts quality of life and interpersonal relationships. Speech and language therapy plays a crucial role in offering interventions. Group intervention is one mode of delivery that could benefit communication functioning and overall wellbeing of people with PPA (pwPPA) and their care partners. Group interventions are also more efficient than one-to-one intervention and may facilitate peer support. AIMS: The aim of this review was to systematically evaluate the current evidence for the effectiveness of speech and language therapy groups for pwPPA and their care partners. Specifically, this paper considered three questions: 1.What evidence-based speech and language therapy groups for pwPPA and their care partners have been reported to date? 2.Are group communication interventions effective in improving quality of life and communication function for pwPPA and their care partners? 3.Are group communication interventions that are designed for people with communication difficulties of other aetiologies (such as stroke) effective for pwPPA? In addition, this review aimed to describe the structure and content of groups, including aims, disciplines involved, size and frequency of group meetings, and outcome measures. METHODS: MEDLINE, CINAHL and PsycINFO were used to retrieve articles of interest. A total of 10 studies published between 2009 and 2022 met the eligibility criteria and therefore were included in this study. Data were extracted from the articles regarding the structure and content of groups. MAIN CONTRIBUTION: Although evidence is currently limited, results suggest that speech and language therapy group intervention can improve specific linguistic processes, the use of communication strategies and psychosocial well-being. The importance of multidisciplinary input and care partners' involvement in groups was highlighted, along with the benefits of creative non-verbal activities as tools for self-expression. There is also initial evidence that telehealth group provision and one-off group sessions may be feasible and can benefit psychosocial well-being. Lastly, intentional recruitment and explicit education on different aphasia types are described as important when pwPPA participate in groups with mixed diagnoses. CONCLUSIONS: The literature on speech and language therapy group interventions for PPA shows promise of positive effects on communication function and psychosocial well-being of both pwPPA and their care partners. Speech and language therapists can consider these published interventions when designing and implementing similar groups, but more robust evidence is required to confirm the relative effectiveness of this approach. WHAT THIS PAPER ADDS: What is already known on this subject Speech pathology led group intervention shows some promise in benefitting communication functioning and overall well-being of pwPPA and their carers, but there has been no systematic evaluation of all the evidence regarding the efficacy of speech and language therapy led groups. Establishing feasibility, acceptability and efficacy of speech and language therapy group interventions for pwPPA and their carers may present a valuable addition for managing this progressive language disability. What this paper adds to existing knowledge Although evidence is currently limited, results from this systematic review suggest that speech and language therapy led group intervention can improve specific linguistic processes, the use of communication strategies and psychosocial well-being for pwPPA and their carers. The importance of multidisciplinary input and carers' involvement in groups was highlighted, along with the benefits of creative non-verbal activities as tools for self-expression. There is also initial evidence that telehealth group provision for carers may be feasible and can benefit psychosocial wellbeing. Lastly, intentional recruitment and explicit education on different aphasia types are described as important when pwPPA participate in groups with mixed diagnoses. What are the potential or actual clinical implications of this work? A synthesis of the evidence base for speech and language therapy led PPA groups, as well as a description of the group components and formats, will be valuable for clinical service planning, and will guide future examination of group options for pwPPA and their carers. Speech and language therapists can also consider the research findings from this systematic review when designing and implementing similar groups in their local context.

Group interventions for people with primary progressive aphasia and their care partners: Considerations for clinical practice.

Primary progressive aphasia (PPA) describes a group of language-led dementias. Speech and language therapy is the main available intervention for people with PPA. Despite best practice recommendations for speech and language therapy to include access to group therapies (Volkmer et al, 2023a), research evidence to date has predominantly focused on delivery in individual sessions. The aim of this study was to gather the collective intelligence of expert speech and language therapists/pathologists delivering group therapy for people with PPA to synthesize guidance for clinicians. This paper describes a qualitative study using narrative synthesis methods. Data were collected using the Template for Intervention Description and Replication - TIDiER. Eight respondents described a total of 17 different groups. Respondents worked across healthcare, research clinics and third sector organizations in Australia, Canada, Spain, the USA and the UK. For the purposes of analysis, groups were divided into two main types: (1) groups delivering specific therapy interventions; and (2) groups providing broader opportunities for conversational practice and support. This initial synthesis of the current state of the art in PPA therapy groups highlights several important considerations around candidacy, content and ecological validity of delivering group intervention for people with PPA.

Development of a hospital-academic collaboration to implement an interprofessional telehealth breastfeeding support group.

Accessible lactation support for breastfeeding parents, even in well-resourced areas, is often insufficient. At the same time, opportunities for real-life, sustainable interprofessional learning experiences for health professions students are scarce. Delivery of lactation support via telehealth allows for greater accessibility for both consumers and students. This study describes the development of an interprofessionally-facilitated telehealth breastfeeding support group, a partnership between a health professions graduate school and a teaching hospital in Boston, MA. Program conceptualization, theoretical basis, and development are reviewed. Occupational therapy and nursing students were involved in the group at various points of entry and with different degrees of engagement. Students developed skills in group facilitation, lactation support, and program evaluation. The group had consistent participation, ranging from 2 to more than 10 participants per session, serving parents across urban and rural areas. The group format and development could be replicated to provide needs for local communities of parents and interprofessional students.

Creating a Comprehensive Pandemic Response to Decrease Hospitalist Burnout During COVID-19: Intervention vs Control Results in 2 Comparable Hospitals (HOSP-CPR).

BACKGROUND: Physician burnout increased during the COVID-19 pandemic. OBJECTIVE: To evaluate the effectiveness of a multimodal workplace intervention designed to reduce hospitalist burnout. DESIGN: Participants and setting: Our intervention group was composed of internal medicine hospitalists at Providence Portland Medical Center (64 providers including 58 physicians and 6 nurse practitioners). Our control was composed of internal medicine hospitalists at Providence St Vincent's Hospital (59 physicians and 6 nurse practitioners). MEASUREMENTS: Two surveys were given during, before, and after a 12-month intervention period (October 2020 and again in October 2021). Surveys included demographics, job satisfaction, the Maslach Burnout Inventory, the Pandemic Experiences Survey, and 2 questions about leaving the job. INTERVENTIONS: Three hospitalists designated as wellness warriors created weekly COVID group meetings, providing up-to-date information about COVID-19 infection rates, treatments, and work-flow changes. Discussions included coping and vaccine hesitancy, difficult case debriefs, and intensive care unit updates. Individual coaching was also offered. Meeting minutes were taken and sessions were recorded for asynchronous access. RESULTS: No site differences in burnout or job satisfaction were evident pre-intervention. Post-intervention, the intervention group reported 32% burnout while controls reported 56% (p = .024). Forty-eight percent of the intervention group reported high wellness support vs. 0% of the controls (< .001). Intervention participants attributed 44% of wellness support to Providence alone, vs. controls at 12% (< .001). Regressions controlling sex, work hours, experience, race, and children in the home showed the intervention's positive effects on burnout and job satisfaction remained significant (all p < .02). LIMITATIONS: For privacy reasons, all survey responses were anonymous, meaning that individual pre-post changes could not be tracked. CONCLUSION: We believe the intervention resulted in substantial burnout prevention and is feasible for adoption in most hospitals and clinics.

Effect of a novel pilot support group on distress and quality of life in breast cancer patients in Nigeria.

OBJECTIVE: To assess the effect of a new breast cancer support group (BCSG) on breast cancer patients' self-reported distress and quality of life. METHODS: A single arm pre-post trial providing an eight session healthcare provider led BCSG. Primary outcome variables were distress and quality of life assessed using the National Comprehensive Cancer Network Distress Thermometer (DT) and The Functional Assessment of Cancer Therapy - Breast plus Arm Morbidity (FACT-B+4), respectively. Topics in each session addressed a wide range of issues some of which were pre-selected by the patients themselves. DATA ANALYSIS: Paired sample t-test was used for data analysis on International Business Machine Statistical Package for the Social Sciences 21. RESULTS: The participants (N = 18) had a mean age of 51. Most had secondary school level education (54%), were traders (59%) and had stage 3 or 4 disease (67%). A larger proportion (78% or n = 14) of the patients lived in rural areas, while 4 (22%) of the patients lived in Ibadan. Out of the 8 sessions, 12 (67%) of the participants attended 1-3 sessions while 6 (33%) attended 4-8 sessions. There were, significant improvements in emotional wellbeing (t = -4.253; p < 0.05) and functional wellbeing (t = -2.191; p < 0.05) on the FACT-B+4. There was a significant reduction in the DT score (t = 2.345; p < 0.05) but the number of items on the problem list were not significantly reduced (t = 1.191; p > 0.05). Majority (75%) of the patients rated the support group activities as satisfactory. CONCLUSION: These data show that the support group can benefit breast cancer patients in terms of reduced distress levels along with satisfaction and improvement in the functional and emotional wellbeing indices of quality of life.

Prospective analysis of the attendance behaviour of the participants of a facilitated support group for patients after allogeneic hematopoietic cell transplantation.

PURPOSE: Support groups might help survivors of allogeneic hematopoietic cell transplantations (HCT) to cope with medical, psychological, and social challenges. The aim of this project was (1) to establish a facilitated post-HCT support group and (2) to assess the participation behaviour. METHODS: From 11/2013 until 7/2017, all adult patients who had received a HCT at our centre were invited to participate in a professionally facilitated support group. The format of the group was unstructured without any rules regarding regular attendance. The attendance was prospectively minuted by the facilitator. Reasons for non-attendance were assessed by a survey. RESULTS: During the observation period, 53 group meetings were scheduled. Nine meetings were cancelled because of low attendance. Altogether 23 different patients (F: n=10; M: n=13) and 10 spouses (F: n=9; M: n=1) participated. Median participation was 5 [range 2-11]. With respect to all HCT patients who had the theoretical opportunity to attend, the mean participation rate was 7%. Thirteen patients and four spouses attended more than one meeting. The median count of participations among those participants was 8 [2-32]. The median interval from the first until the last participation was 16 months. The main reason reported for non-participation was the effort to get to the venue of the support group. CONCLUSIONS: To our knowledge, this is the first analysis on the attendance behaviour of the participants of a support group for HCT survivors. The results provide guidance for the organization of future support groups and indicate what participation rates can be expected and how they might be increased.

Virtual parent-led peer support groups for parents of children with eating disorders: A mixed methods feasibility study.

OBJECTIVE: To examine the feasibility of a virtual parent-led peer support group (vPLPSG) intervention for parents of children with eating disorders (EDs). METHODS: Forty-four parents were invited to attend 2-h-long vPLPSG sessions every other week for 6 months. A convergent mixed methods design was used to integrate quantitative survey data (collected at three timepoints and analyzed using repeated measures ANOVA) and qualitative interview data (collected at 6 months and analyzed using content analysis) to assess intervention feasibility. Feasibility was comprised of acceptability (e.g., recruitment and retention rates, desire to continue attending the groups) and preliminary effectiveness (e.g., change in parents' self-reported burden). RESULTS: The recruitment rate (67%), retention rate (77%), and attendance rate (60%) demonstrated adequate acceptability. All parents expressed their recommendation of this group to other parents, and most wanted to continue attending vPLPSG sessions. Participants qualitatively reported less isolation and burden as well as improvements in skills and confidence to manage their child's symptoms. These preliminary effectiveness findings were corroborated by quantitative data, with participants reporting a significant decrease in burden [mean difference (MD) = 6.61; p < .004], increase in confidence (MD = 11.17; p < .001), and decrease in unmet needs (MD = 5.03; p < .001) from baseline to 6-months. DISCUSSION: The vPLPSG intervention demonstrated feasibility with respect to acceptability and improvements in preliminary parental outcomes. Future research should evaluate the effectiveness of this intervention using a larger, more diverse sample. PUBLIC SIGNIFICANCE: Dedicated efforts to support caregivers, such as through virtual parent-led peer support groups, have the potential to increase confidence and decrease burden for parents managing their child's eating disorder.

Participating in Bariatric Support Groups: the Effects on Self-management Changes.

BACKGROUND: This study focused on changes in self-management as the main outcome of participation in bariatric psychoeducational support groups. We assessed the contribution of changes in cognitive and emotional variables to improved self-management among 155 participants. METHOD: Data for this longitudinal study were collected at the beginning (time 1) and at the end (time 2) of the support groups' 10-session program. The structured questionnaire included self-management (the Bariatric Surgery Self-Management Behaviors Questionnaire), cognitive variables (eating self-efficacy, eating awareness, weight control motivation), and emotional variables (positive and negative affect, emotional eating), as well as background variables. RESULTS: Significant improvements in self-management and in eating self-efficacy, eating awareness, and emotional eating were found at time 2. The hierarchical regression model showed that the improvements in eating self-efficacy, and in positive and negative affect, contributed significantly to improved self-management. Additionally, a modification effect of negative affect was found. CONCLUSION: We conclude that participation in psychoeducational bariatric support groups is beneficial to improving one's self-management.

Online support group for patients with inflammatory eye disease: Characterisation of members and assessment of benefits.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

The Impact of a Mobile Support Group on Distress and Physical Activity in Breast Cancer Survivors: Randomized, Parallel-Group, Open-Label, Controlled Trial.

BACKGROUND: While mobile health apps have demonstrated their potential in revolutionizing health behavior changes, the impact of a mobile community built on these apps on the level of physical activity and mental well-being in cancer survivors remains unexplored. OBJECTIVE: In this randomized controlled trial, we examine the effects of participation in a mobile health community specifically designed for breast cancer survivors on their physical activity levels and mental distress. METHODS: We performed a single-center, randomized, parallel-group, open-label, controlled trial. This trial enrolled women between 20 and 60 years of age with stage 0 to III breast cancer, an Eastern Cooperative Oncology Group performance status of 0, and the capability of using their own smartphone apps. From January 7, 2019, to April 17, 2020, a total of 2,616 patients were consecutively screened for eligibility after breast cancer surgery. Overall, 202 patients were enrolled in this trial, and 186 patients were randomly assigned (1:1) to either the intervention group (engagement in a mobile peer support community using an app for tracking steps; n=93) or the control group (using the app for step tracking only; n=93) with a block size of 10 without stratification. The mobile app provides a visual interface of daily step counts, while the community function also provides rankings among its members and regular notifications encouraging physical activity. The primary end point was the rate of moderate to severe distress for the 24-week study period, measured through an app-based survey using the Distress Thermometer. The secondary end point was the total weekly steps during the 24-week period. RESULTS: After excluding dropouts, 85 patients in the intervention group and 90 patients in the control group were included in the analysis. Multivariate analyses showed that patients in the intervention group had a significantly lower degree of moderate to severe distress (B=-0.558; odds ratio 0.572; P<.001) and a higher number of total weekly step counts (B=0.125; rate ratio 1.132; P<.001) during the 24-week period. CONCLUSIONS: Engagement in a mobile app-based patient community was effective in reducing mental distress and increasing physical activity in breast cancer survivors. TRIAL REGISTRATION: ClinicalTrials.gov NCT03783481; https://classic.clinicaltrials.gov/ct2/show/NCT03783481.

Mother-child dyad support needs to be expressed by mothers diagnosed with breast cancer.

AIMS AND OBJECTIVES: To investigate the support needs identified by Taiwanese breast cancer diagnosed mothers for themselves and their 6-12-year-old children for implementation in a support group. BACKGROUND: Mothers with dependent children are burdened with diverse child-centered concerns while battling breast cancer. A better understanding of the concomitant support needs of mothers and their children can yield tailored support for ill mothers and their children. DESIGN: A qualitative descriptive study employing content analysis of collected data. METHODS: Between February and June of 2020, semi-structured individual interviews were conducted with 20 mothers who had been diagnosed with breast cancer in the last 2 years. Qualitative content analysis was used. This study followed the COREQ guidelines. RESULTS: Ill mothers favoured a hybrid format for support groups, consisting of mother-only, child-only, and mother-child group sessions. The content analysis yielded four themes for mother-only group sessions: (1) learning to reach out to children; (2) dealing with negative emotions; (3) how to say goodbye to children; and (4) resetting for the future. Three themes related to child-only group sessions emerged: (1) emotional and health education; (2) getting along with a sick mother; and (3) preparing for uncertainty. The core theme for mother-child group sessions was relationship enhancement. CONCLUSION: The findings revealed that mother-reported support needs of ill mothers and their children included support for improving children's emotional well-being and mothers' emotional coping, preparing for uncertainty, and promoting intimacy in the mother-child relationship. RELEVANCE TO CLINICAL PRACTICE: A relation-focused approach to psychosocial support group development that allows mother-child mutual influences on each other's coping to be addressed bilaterally is suggested. PATIENT OR PUBLIC CONTRIBUTION: Mothers diagnosed with breast cancer were interviewed for data collection and invited to review and validate the synthesised data for enhancing the credibility of the study.

The impact of peer-led support groups on health-related quality of life, coping skills and depressive symptomatology for women with PCOS.

Support groups can be a powerful medium in providing psychological support to women with Polycystic Ovary Syndrome (PCOS). The study evaluated the impact of peer support group on Health-Related Quality of Life (HRQoL), depressive symptomatology and coping strategies among women with PCOS. The pre- and post-test experimental design was used. Women with PCOS not receiving psychiatric medication and attending clinics of a teaching hospital in Colombo were recruited. They were randomly allocated based on clinic days to the experimental (n = 20) and control (n = 22) groups. The Intervention group participated in the specific peer support program for 10 weeks, while the control group received general health reading material for 10 weeks through the post. The Modified Polycystic Ovary Syndrome Questionnaire (M-PCOSQ), Centre for Epidemiologic Studies Depression Scale (CES-D) and Brief COPE inventory were administered to both groups before and 1 month after completing the intervention. Before the intervention, there was no significant difference between the two groups regarding the scores of HRQoL, depressive symptomatology and coping skills. One month after the intervention, the support group exhibited improvement in HRQoL, depressive symptomatology and coping skills (p < 0.01) compared to the control group. The peer support group is an effective intervention to uplift the psycho-social wellbeing of women with PCOS through receiving emotional support from those similarly afflicted.

Feasibility of school-based parent support groups for transition-aged youth with intellectual disabilities.

BACKGROUND: Parents experience difficulties supporting children with intellectual disabilities when they exit the school system. One promising way to mitigate this problem is to set up school-based parent support groups. This study aimed to examine the development and feasibility of school-based parent support groups in South Korea designed to connect parents of transition-aged youth with intellectual disabilities. METHODS: This qualitative study included 29 participants. Five focus groups and seven individual interviews were conducted with parents as co-researchers. Data were analysed using thematic analysis. RESULTS: Participants reported meaningful experiences after participating in the parent support groups. However, it is critical to consider the following components to promote their feasibility: clearly defined roles, small group meetings, school-based initiatives, and collaboration. CONCLUSIONS: Parent support groups could be a valuable way to promote parental empowerment. Implications for future practices are suggested.

Autism spectrum disorder, parent coping, and parent concerns during the COVID-19 pandemic.

The COVID-19 outbreak beginning in 2019 has created a challenging period for families who have children with autism spectrum disorder (ASD). The purpose of this study was to examine parents' perceptions about the consequences of the pandemic on their child who has ASD and parents' concerns and resources during the pandemic. Data was collected between July to November 2020 from U.S. parents who have at least one child with ASD between 3 and 21 years old. An online survey, consisting of 88 items, was developed and distributed online in newsletters and Twitter pages of several ASD organizations, and various caregiving support groups on Facebook. Descriptive analysis showed that during the data collection time (N = 57), 79% of the children had immediate access to electronic devices to utilize online services. Many of the children used remote learning services for less than 2 h (74%) per day. Many children had difficulties following social distance rules. They spent more time in passive activities than active activities. Twenty-five percent of parents reported that they drank alcohol more often during the pandemic. However, parents who participated in support groups consumed less alcohol. Also, child symptom severity was associated with parents taking less times for themselves. These results can assist practitioners in identifying specific difficulties that parents and children with ASD experienced during the pandemic. This work also underlines the parents' needs for community supports and mental health services.

Utility of HIV support groups in advancing implementation research in resource-limited settings: experiences from an urban-setting HIV support group in Zimbabwe.

Support groups for people living with the Human Immunodeficiency Virus (HIV) have continued to evolve since their emergence over two decades ago. In addition to providing HIV education and fostering psychosocial support, recent efforts have shifted the focus to socio-economic activities and retention in care. The sense of urgency to adopt new treatment and prevention strategies in sub-Saharan Africa necessitates greater engagement of established HIV care programs, especially among researchers seeking to conduct implementation research, promote prevention strategies and optimize treatment as prevention. To maximize the utility of support groups in doing so, efforts to create an organized, collaborative framework should be considered. This paper aims to describe the process of refocusing an adult HIV peer-support group and illustrate how a structured program was strengthened to sustain implementation research in resource-limited settings, while promoting patient recruitment and retention. A multidisciplinary team of scientists supporting an HIV peer-support group spearheaded the implementation process that authored the successes, challenges and lessons documented over eight years. Psychosocial support, nutrition care and support, adherence education and income generating projects were the main interventions employed. The initiative resulted in seven peer-reviewed publications, submission of 23 scientific abstracts, scientific dissemination at 12 international conferences. Eleven research studies and 16 income generating projects were successfully conducted over eight years. More than 900 patients participated in peer-support group activities every month and 400 were engaged in income generating activities. This multidisciplinary structured program was valuable in the retention and recruitment of patients for implementation research and benefits extended to psychosocial support, microeconomic projects, and improved nutrition. The support group contributed to strengthening implementation research through providing a platform for identification of research priorities, patient recruitment and retention in studies and dissemination of research findings.

Feasibility trial of a telehealth support group intervention to reduce anxiety in multiple sclerosis.

OBJECTIVE: Anxiety is common among persons with MS (PwMS), but widely accepted treatments are lacking. Group-based interventions delivered via telehealth are an accessible treatment option requiring clinical trial evidence to support feasibility and initial efficacy. We conducted a pilot feasibility trial of an online support group intervention to reduce anxiety in PwMS. METHODS: A non-randomized, parallel arm clinical trial was conducted. A total of 31 PwMS were enrolled: 20 completed a 12-week telehealth-delivered support group intervention and 11 were assigned to a survey-only control group. Primary feasibility outcomes were adherence and completion rates. Primary efficacy outcome was anxiety, secondary outcomes were depression, loneliness, distress, self-efficacy, stress, and quality of life. RESULTS: Twenty-six participants completed the study. Intervention group adherence (75%) and completion (85%) rates were acceptable. Results indicated a medium size between-group effect, suggesting a greater reduction in anxiety in the intervention group compared to the control group [U = 39.50, p = 0.045, r = 0.39]. No group differences in other outcomes were observed. CONCLUSION: A telehealth-delivered support group intervention appears feasible for further study and shows initial efficacy for the reduction of anxiety in PwMS.

The Internet Knows More Than My Physician: Qualitative Interview Study of People With Rare Diseases and How They Use Online Support Groups.

BACKGROUND: Patients struggling with rare diseases may face challenges caused by care providers being unfamiliar with their condition. The life span of people with rare diseases may be the same as that of healthy people, but their quality of life is different. Patients with chronic pain are constantly looking for ways to mitigate their pain. Pain killers are not a permanent solution. In addition to the medical and nonmedical costs of rare diseases for both patients and health care providers, there is a need for sustainable sources of information that are available to help with pain and improve their quality of life, with the goal of reducing physician visits and hospital admissions. OBJECTIVE: This study investigated the challenges that patients with genetic disorders face in managing their health conditions and finding disease-related information as well as the effect of online peer support groups on pain mitigation and care management. METHODS: Interviews were conducted via Zoom between July 2021 and December 2021. Eligible participants were those who were aged >18 years, had a medical diagnosis of any type of Ehlers-Danlos syndrome (EDS) with chronic pain, and were members of any support group. Participants were recruited through an announcement in the research and survey section of The Ehlers-Danlos Syndrome Society web page. Interviews were analyzed using the framework approach. Data were systematically searched to identify patterns, analyze them, and identify themes. Interview audio files were transcribed and independently coded by two researchers (SA and AT). Through an iterative process, a final coding table was agreed upon by the researchers and used to thematically analyze the data. RESULTS: We interviewed 30 participants (mean age 37.7, SD 15 years; n=28, 93% were women; n=23, 77% were residing in the United States). Thematic analysis revealed that participants (patients with EDS) were constantly in pain and most of them have not received accurate and timely diagnoses for many years. They expressed their challenges with health care providers regarding diagnosis and treatment, and complained about their providers' lack of support and knowledge. Participants' main sources of information were web-based searches, academic journals, The Ehlers-Danlos Syndrome Society web page, and online peer support groups on Facebook, Reddit, Twitter, and Instagram. Although pain killers, cannabis, and opioids are providing some pain relief, most patients (28/30, 93%) focused on nonmedical approaches, such as hot or ice packs, physical therapy, exercises, massage, mindfulness, and meditation. CONCLUSIONS: This study highlights the information gap between health care providers and patients with genetic disorders. Patients with EDS seek access to information from different web-based sources. To meet the needs of patients with genetic disorders, future interventions via web-based resources for improving the quality of care must be considered by health care professionals and government agencies.