Survivor Support Groups Research Articles

Evaluating Online Cannabis Health Information for Thai Breast Cancer Survivors Using the Quality Evaluation Scoring Tool (QUEST): Mixed Method Study.

Following medical cannabis legalization in Thailand in 2019, more people are seeking medical cannabis-related information, including women living with breast cancer. The extent to which they access cannabis-related information from internet sources and social media platforms and the quality of such content are relatively unknown and need further evaluation. This study aims to analyze the factors determining cannabis-related content quality for breast cancer care from internet sources and on social media platforms and examine the characteristics of such content accessed and consumed by Thai breast cancer survivors. A mixed methods study was conducted between January 2021 and May 2022, involving a breast cancer survivor support group. The group identified medical cannabis-related content from frequently accessed internet sources and social media platforms. The contents were categorized based on content creators, platforms, content category, and upload dates. Four researchers used the Quality Evaluation Scoring Tool (QUEST) to assess content quality, with scores ranging from 0 to 28. Contents were expert-rated as either high or poor. The QUEST interobserver reliability was analyzed. Receiver-operating characteristic curve analysis with the Youden index was used to determine the QUEST score cut-off point. Statistical significance was set at P<.05. Fairclough Critical Discourse Analysis was undertaken to examine the underlying discourses around poor-quality content. Sixty-two Thai-language cannabis-related items were evaluated. The content sources were categorized as follows: news channels (21/62, 34%), government sources (16/62, 26%), health care providers (12/62, 19%), and alternative medicine providers (12/62, 19%). Most of the contents (30/62, 48%) were uploaded to YouTube, whereas 31% (19/62) appeared on websites and Facebook. Forty of 62 content items (64%) were news-related and generic cannabis advertisements while 8 of 62 (13%) content items had no identifiable date. The interobserver QUEST score correlation was 0.86 (P<.001). The mean QUEST score was 12.1 (SD 7.6). Contents were considered "high" when the expert rating was >3. With a QUEST score of 15 as the threshold, the sensitivity and specificity for differentiating between high and poor content quality were 81% and 98%, respectively. Content creation was the only significant factor between high- and poor-quality content. Poor-quality contents were primarily created by alternative medicine providers and news channels. Two discourses were identified: advocacy for cannabis use normalization and cannabis romanticization as a panacea. These discourses overly normalize and romanticize the use of cannabis, focusing on indications and instructions for cannabis use, and medical cannabis promotion, while neglecting discussions on cannabis contraindications and potential side effects. The varying quality of medical cannabis-related information on internet sources and social media platforms accessed and shared by Thai breast cancer survivors is an issue of concern. Given that content creators are the sole predictive factors of high content quality, future studies should examine a wider range of cannabis-related sources accessible to both the public and patients to gain a more comprehensive understanding of the issue.

Peer Support Groups Integrated with Trauma-Sensitive Yoga for Women Survivors of Sexual Violence: A Feasibility Study and Qualitative Examination.

Trauma Center Trauma-Sensitive Yoga (TCTSY) is an evidence-based yoga protocol and approach used for somatic trauma care. Seven women participated in a 12-week TCTSY-integrated peer support group for sexual violence survivors at a community rape crisis center. Three semi-structured interviews were conducted: interview 1 at 1-2 months post-group, interview 2 at 8-9 months post-group, and interview 3 at 24-33 months post-group. Thematic analysis was conducted following Clandinin and Connelly's three-dimensional space approach. Participants described themes related to improvements in trauma symptoms, mind-body connection, present-centered awareness, self-regulation, and relationships with self and others. Changes were sustained at the final interview. TCTSY-integrated peer support groups appeared feasible and acceptable to women victim-survivors of sexual violence.

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

PurposeSupport 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.MethodsFrom 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.ResultsDuring 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.ConclusionsTo 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.

Peer-support groups for suicide loss survivors: a systematic review

ABSTRACT Despite the increase in research on suicide bereavement, the effectiveness of peer-support group programs in promoting the grief process and mental health of suicide loss survivors remains unclear. The goal of our study was to determine the effectiveness of peer-support group programs for suicide loss survivors. A systematic review (PROSPERO ID: CRD42022307591) of articles published from January 2000 to December 2021 was applied in the databases PubMed, Web of Science, Scopus, and SciELO. Articles written in English, Spanish, or Portuguese with full text availability were included in this review to perform a narrative synthesis of the results and a bias analysis. 12 qualitative and two quantitative studies, were selected. No evidence of efficacy in reducing suicidal behavior was found. Qualitative studies highlighted that these types of groups provide social support, enabling individuals to cope with grief and mitigating psychological discomfort. In conclusion, from evidence-based medicine, results on peer-support groups for suicide loss survivors has a low level of certainty and an insufficient grade of recommendation. Nevertheless, qualitative studies indicate the potential benefits of these programs. The prevailing use of qualitative methodologies accounts for a participatory and subjective epistemology, typical of community programs such as peer-support programs. Finally, both quantitative and qualitative perspectives are necessary for the integration and validation of mutual support groups for suicide survivors in public mental health services.

Cancer Survivors' Experiences With and Preferences for Medical Information Disclosure and Advance Care Planning: An Online Survey Among Indonesian Cancer Support Groups.

To understand the experiences and preferences of Indonesian cancer survivors regarding medical information disclosure and advance care planning. On the basis of systematic reviews of the scientific literature, qualitative studies, and expert-panel input, we developed an online survey that was distributed to nine cancer survivor support groups in Indonesia. A total of 1,030 valid responses were received. Most participants were younger than 60 years (92%), female (91%), married (78%), Muslim (75%), diagnosed with breast cancer (68%), highly educated (64%), and more than one year beyond diagnosis of their cancer. If diagnosed with a life-limiting illness, participants wished to be informed about their diagnosis (74%), disease severity (61%), estimated curability (81%), expected disease trajectory (66%), and estimated life expectancy (37%). Between 46%-69% of the participants wished to discuss four topics of advance care planning (end-of-life treatments, resuscitation, health care proxies, and what matters at the end of life); 21%-42% had done so. Of those who wished to discuss these topics, 36%-79% preferred to do so with their family members. The most important reasons for not being willing to engage in advance care planning were the desire to surrender to God's will and to focus on here and now. In a group of cancer survivors, most of them were highly educated, young, female, and diagnosed with breast cancer. Their preferences for medical information and advance care planning varied, with the majority wishing for information and involvement in advance care planning. Culturally sensitive advance care planning involves health care professionals eliciting individuals' preferences for medical information disclosure and discussing different topics in advance care planning conversations.

“Knowing I’m Not Alone”: The Development of a Support Group for College Victims and Survivors of Sexual Assault

ABSTRACT Group therapy is an effective modality to treat various mental health concerns and is proven to have significant interpersonal benefits. Despite the high prevalence of sexual violence amongst college-aged women, there are limited contemporary models for providing a trauma-specific group for this population. This article describes an innovative eight-session group for victims and survivors of sexual violence. Offered in a university setting, this semi-structured group incorporates psychoeducation about trauma, self-compassion and mindfulness techniques, coping skill development, trauma processing, expressive and creative therapeutic outlets, and peer connections in a confidential, affirming environment. The theoretical grounding and evidence-based framework underpinning this group is described, along with a detailed account of the weekly group sessions. Quantitative and qualitative data from the pilot study are reported, with preliminary results suggesting this is an effective group therapy model for improving post-traumatic stress symptoms, well-being, resilience, and self-compassion. Limitations and future directions are discussed.

The Efficacy of Psychoeducational Support Group for Saudi Breast Cancer Survivors.

The adverse effects of psychological distress and quality of life are common outcomes in breast cancer survivors. Psychoeducational interventions have been widely used to reduce these adverse outcomes among those patients. This study aims to assess the impact of the Blossom support group on psychological distress and quality of life in breast cancer patients in Saudi Arabia. This study is a retrospective cohort study for the Blossom program, which was held yearly for eight weeks from 2014 until 2018. Data was collected from the survivors' records at the Zahra Breast Cancer Association in Riyadh, Saudi Arabia. include the quality of life scale (SF-36) and Hospital Anxiety Depression Scale (HADS) with both were available in the Arabic translated version. Both tools were used as the screening measurement for the assessment of the quality of life, depression, and anxiety before and after the program. The data were analyzed using the Statistical Analytical Software (SAS), version 9.4. Statistical differences in median scores of SF-36 and HADS before and after the program was tested using Wilcoxon signed-rank test. A total of 54 breast cancer survivors were enrolled in the Blossom support program over the period 2014 to 2018. Of these participants, only 25 participants completed the full eight weeks program. There were statistically significant differences in the overall quality of life (SF-36) before and after the 8 weeks from baseline of the experiment (W = 60, P-value =0.0125). Moreover, the overall anxiety and depression scores were tested separately and the results reveal statistically significant differences in both dimensions before and after the program (Anxiety: W=132, P-value = 0.0059; depression: W=157, P-value = 0.0002). The Blossom support program showed a positive impact on the quality of life and the psychological well-being of breast cancer survivors. It is recommended to utilize this support program across a wide range of health organizations with breast cancer survivors as a baseline of psychological care to improve the quality of life.

Exploring the Role of Social Support in Mitigating Domestic Violence in Old-Age Marriages in Nigeria

Domestic violence is a pervasive problem in Nigeria, affecting individuals of all ages and backgrounds. However, research has shown that older adults may be particularly vulnerable to abuse, as they are often socially isolated and dependent on their partners for care and support. In this context, social support has been identified as a potential protective factor against domestic violence. This paper explores the role of social support in mitigating domestic violence in old age marriages in Nigeria. Drawing on a review of existing literature, the paper examines the various forms of social support that are available to older adults, including emotional, instrumental, and informational support. It also considers the ways in which social support can be mobilized to prevent and respond to domestic violence, such as through community-based interventions and support groups for survivors. The paper highlights several key findings. First, it notes that social support is a critical resource for older adults in preventing and coping with domestic violence. Second, it emphasizes the need for more research on the specific types of social support that are most effective in preventing and mitigating abuse in old age marriages. Third, it highlights the importance of community-based interventions that prioritize social support and address the unique needs of older adults. Overall, this paper underscores the critical role that social support can play in mitigating domestic violence in old age marriages in Nigeria. It suggests that greater attention should be paid to developing and implementing interventions that promote social support and address the unique needs of older adults in the context of domestic violence.

Abstract B051: A qualitative exploration of prostate cancer treatment and survivorship advice from employed prostate cancer survivors

Abstract Introduction: Prostate cancer is the most common and second most deadly non-skin cancer among American men. Prostate cancer outcomes are especially detrimental for African-American men. While prostate cancer treatment can prolong life, it can also produce debilitating results that can impact men’s ability to perform some jobs/work-related tasks, cause decisional regret, and affect their overall quality of life. Objective: To improve prostate cancer treatment decision-making and survivorship experiences of actively employed prostate cancer survivors, we asked survivors with jobs to provide advice for men facing prostate cancer treatment and their families/friends, employers/co-workers, and healthcare providers. Methods: African-American and White prostate cancer survivors were recruited primarily from support groups and two southeastern cancer centers: Inclusion criteria included having (1) had a prostatectomy or radiation therapy less than 36 months ago, (2) worked for pay within one month prior to treatment, and (3) expected at time of treatment initiation to be working 6 months later. Survivors were engaged in 60-to-90-minute in-depth interviews. Interview transcripts were analyzed using a content analysis approach to ascertain prominent themes within and between races. Results: Forty-five prostate cancer survivors (44% black and 55% white) had a mean age of 61. Over half of men from either racial group had a bachelor’s degree. Approximately 63% and 47% from both racial groups had undergone a prostatectomy or radiation therapy, respectively. Prominent themes related to advice for prostate cancer survivors included the importance of: conducting thorough research on treatment options and gaining awareness of the treatment side effects; identifying survivors or survivor support groups; and informing family, employers, and others about support needs. Advice for family and friends emphasized the significance of providing instrumental and emotional support to survivors. Employer and co-worker advice most often related to providing work-related accommodations/support (e.g., additional time or adapted work tasks) and avoiding stigmatizing treatment of the survivor. Most advice for healthcare providers focused on presenting survivors with honest, thorough, and plain-language communication about treatment options and side effects. No major differences existed in themes by race. Conclusion: Overarching needs of employed prostate cancer survivors commonly relate to the need for detailed information about their treatment process and their desire for social support from family/friends, employers/co-workers, and healthcare providers. The most vital concern for survivors is understanding how, and to what extent, side effects can affect them personally and professionally. Future research should determine what strategies might be effective for preparing these stakeholder groups to support employed prostate cancer survivors. Citation Format: Otis L. Owens, Joanne Sandberg, Andy Mayfield, Emily Dressler, Melyssa Foust. A qualitative exploration of prostate cancer treatment and survivorship advice from employed prostate cancer survivors [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr B051.

The other COVID-19 survivors: Timing, duration, and health impact of post-acute sequelae of SARS-CoV-2 infection.

Aims and ObjectivesTo determine the frequency, timing, and duration of post‐acute sequelae of SARS‐CoV‐2 infection (PASC) and their impact on health and function.BackgroundPost‐acute sequelae of SARS‐CoV‐2 infection is an emerging major public health problem that is poorly understood and has no current treatment or cure. PASC is a new syndrome that has yet to be fully clinically characterised.DesignDescriptive cross‐sectional survey (n = 5163) was conducted from online COVID‐19 survivor support groups who reported symptoms for more than 21 days following SARS‐CoV‐2 infection.MethodsParticipants reported background demographics and the date and method of their covid diagnosis, as well as all symptoms experienced since onset of covid in terms of the symptom start date, duration, and Likert scales measuring three symptom‐specific health impacts: pain and discomfort, work impairment, and social impairment. Descriptive statistics and measures of central tendencies were computed for participant demographics and symptom data.ResultsParticipants reported experiencing a mean of 21 symptoms (range 1–93); fatigue (79.0%), headache (55.3%), shortness of breath (55.3%) and difficulty concentrating (53.6%) were the most common. Symptoms often remitted and relapsed for extended periods of time (duration M = 112 days), longest lasting symptoms included the inability to exercise (M = 106.5 days), fatigue (M = 101.7 days) and difficulty concentrating, associated with memory impairment (M = 101.1 days). Participants reported extreme pressure at the base of the head, syncope, sharp or sudden chest pain, and “brain pressure” among the most distressing and impacting daily life.ConclusionsPost‐acute sequelae of SARS‐CoV‐2 infection can be characterised by a wide range of symptoms, many of which cause moderate‐to‐severe distress and can hinder survivors' overall well‐being.Relevance to Clinical PracticeThis study advances our understanding of the symptoms of PASC and their health impacts.

Feasibility and Acceptability of an Active Video Game-Based Physical Activity Support Group (Pink Warrior) for Survivors of Breast Cancer: Randomized Controlled Pilot Trial.

BackgroundSurvivors of breast cancer with functional limitations have a 40% higher mortality rate than those without. Despite the known benefits of physical activity (PA), <40% of survivors of breast cancer meet the recommendations for PA. The combination of active video games (AVGs) and group-based PA counseling may hold potential for motivating PA adoption and improving physical function. However, this method has not been widely studied in survivors of breast cancer.ObjectiveWe aimed to determine the feasibility and acceptability of a group AVG-based multicomponent PA intervention and estimate its effect size and variability on PA and physical function in female survivors of breast cancer in a clinic setting.MethodsFemale survivors of breast cancer (N=60) were recruited through the clinic and randomly assigned to the intervention group (12 weekly sessions) or the control group (existing support group). The intervention group received game-based pedometers and participated in weekly group AVG sessions, PA behavioral coaching, and survivorship navigation discussions. A participant manual with weekly reflection worksheets was provided to reinforce the coaching lessons and promote self-led PA. The control group received conventional pedometers and participated in an existing breast cancer support group. Feasibility was assessed by enrollment rate (≥50%), retention rate (≥80%), group attendance rate (75% attending ≥9 sessions [intervention group]), and the number of technological issues and adverse events. Acceptability was measured by participants’ attitudes (from strongly disagree=1 to strongly agree=5) toward the use of AVGs and the overall program. The outcomes included PA (accelerometers) and physical function (Short Physical Performance Battery and gait speed). Analysis of covariance was used to determine differences in PA and physical function between the groups. The Cohen d and its 95% CI determined the effect size and variability, respectively. All the analyses followed the intention-to-treat principle.ResultsParticipants were an average of 57.4 (SD 10.5) years old, 70% (42/60) White, and 58% (35/60) off treatment. The enrollment rate was 55.9% (66/118). Despite substantial long-term hurricane-related disruptions, we achieved an 80% (48/60) retention. The intervention group’s attendance rate was 78% (14/18), whereas the control group’s attendance rate was 53% (9/17). Of the 26 game-based pedometers, 3 (12%) were damaged or lost. No study-related adverse events occurred. Acceptability items were highly rated. Steps (β=1621.64; P=.01; d=0.72), Short Physical Performance Battery (β=.47; P=.01; d=0.25), and gait speed (β=.12; P=.004; d=0.48) had a significant intervention effect.ConclusionsThe intervention was feasible and acceptable in this population despite the occurrence of a natural disaster. Pilot results indicate that group AVG sessions, PA coaching, and survivorship navigation produced moderate effects on PA and physical functioning. AVGs with PA counseling can potentially be used in existing breast cancer support groups to encourage PA and improve physical function.Trial RegistrationClinicalTrials.gov NCT02750241; https://clinicaltrials.gov/ct2/show/NCT02750241

Supporting LGBTQA+ peoples’ recovery from sexual orientation and gender identity and expression change efforts

ABSTRACT Objective This paper reports on a critical survivor-driven study exploring how Australian lesbian, gay, bisexual, transgender, intersex, queer and asexual (LGBTQA+) adults attempt recovery from religious Sexual Orientation and Gender Identity and Expression Change Efforts (SOGIECE), and what supports they find useful in this process. The study privileged the critical communal lens of self-titled survivors of perspectives through its reference group, and applied Bronfenbrenner’s psycho-social lens, in an effort to ensure research used by psychologists was for and with survivors rather than on them. Method Qualitative data on SOGIECE survivor experiences and perspectives was collected using two focus groups and interviews including a total of 35 Australian SOGIECE survivors aged 18+ years. Results Findings suggested that post-SOGIECE recoveries were more successful if survivors experience three provisions: people who are affirming with whom to be freely themselves – especially health and mental health practitioners, family and friends, and survivor support groups; considerable time and internal motivation to enable support to be effective; and conflicting aspects of identities and beliefs are reconciled in ways that foreground survivors’ autonomy in their reconstruction. Conclusions SOGIECE survivors need recovery plans that consider complexities at all levels of their ecology of development; and diversify their exposure to affirming supports and ideas at all levels. Mental health practitioners should be especially careful to foreground survivors’ autonomy in therapies, recalling that they likely experienced past abusive therapies/therapy dynamics. Key Points What is already known about this topic: People exposed to Sexual Orientation and Gender Identity and Expression Change Efforts (SOGIECE) are at increased risk for many mental health conditions. People exposed to SOGIECE are at increased risk of self-harm and suicide. SOGIECE survivors need distinct treatment considerations distinguishing ‘pathology’ from SOGIECE’s ‘negative effects’, and challenging past social conformity-drives. What this topic adds: SOGIECE survivors need community (re)building aid in their recovery confluent with their own faith goals and avoiding conformity with therapists’ (faith-negative/faith-positive) ideals. SOGIECE survivors need considerable time and different phases in recovery processes, to do developmental work discussing and reconciling dualities in identities, beliefs and social (re)engagements. Support approaches and resources closely aligned to SOGIECE survivors’ presented identities were emphasised for the initial recovery decision-making, these could later vary more across treatment.

Electronic health records analytics to identify cancer patients with metabolic syndrome.

e18649 Background: Metabolic syndrome, defined as the presence of at least 3 of 5 clinical factors including hypertension, elevated triglyceride levels, low high-density lipoprotein level, insulin resistance, and central obesity, increases the risk of heart disease, fatty liver, and multiple cancers. Metabolic syndrome in cancer patients has been associated with poor cancer-specific and overall survival. Lifestyle modification in patients with metabolic syndrome may reduce the risk of poor outcomes. In this quality improvement project, we aimed to determine the prevalence of metabolic syndrome among cancer patients and survivors seen in an outpatient general internal medicine (GIM) clinic and to determine the feasibility of using electronic health records (EHR) analytics to systematically identify such patients and refer them to lifestyle interventions and liver imaging. Methods: Study period was January-December 2021. During this period, an EHR algorithm was used to identify patients with metabolic syndrome based on the presence of ICD-10 diagnoses of metabolic conditions (diabetes, hypertension, lipid disease, and obesity). This algorithm was used to direct data from patient visits into an interactive dashboard to track metabolic syndrome prevalence and continuously monitor referrals to interventions. In September 2021, a best practice alert based on the EHR algorithm was created to identify patients with metabolic syndrome and prompt providers to refer them to nutrition counseling, liver ultrasound with elastography, and/or a community-based active-living support group for cancer survivors. GIM clinic nurses also reviewed medications and utilized an EPIC SmartPhrase that incorporated laboratory values (e.g., glucose, A1c, and lipids), blood pressure, and body mass index to confirm whether patients actually met the criteria for metabolic syndrome, and if so, they notified medical providers who then ordered the interventions. Patients confirmed to have metabolic syndrome received educational materials about lifestyle modifications. Data extracted from the dashboard were analyzed using Minitab 17 statistical software. Results: Among 1133 patients seen in the GIM clinic during 2021, 609 (54%) had metabolic syndrome. A total of 1045 patients (92%) had hypertension, 802 (71%) had hyperlipidemia, 571 (50%) had obesity, and 483 (43%) had diabetes. Among the 609 patients with metabolic syndrome, 148 (24%) were referred to liver ultrasound with elastography, 124 (20%) to nutrition counseling, and 21 (3%) to the support group. Beginning September 1, the best practice alert was triggered for 1131 clinical encounters meeting criteria for metabolic syndrome. Conclusions: The prevalence of metabolic syndrome among cancer patients seen in a GIM clinic was high. EHR analytics can lead to systematic identification and referral of patients with metabolic syndrome to lifestyle interventions and liver imaging.

Lessons Learnt From the First Year of a First-of-Its-Kind Breast Cancer Patient Psychosocial Support Group in Ethiopia and Promising Practices for Initiation and Implementation of Survivor Support Programs in Low-Resource Settings

PURPOSE Psychosocial support helps cancer patients adjust to diagnosis and treatment and improve their overall well-being. With few resources committed to cancer prevention and treatment in Ethiopia, patients’ and survivors’ mental health needs are frequently disregarded, resulting in low quality of life. In October 2020, a support group for breast cancer (BC) patients was formed at Adama Hospital Medical College (AHMC), the first of its kind in Ethiopia. Here, we reflect on lessons learnt from the first year of implementation and share promising practices for establishing such groups in low-resource settings. METHODS The founder and facilitators of the AHMC BC patient and survivor support group describe the program and critically reflect on its impact, challenges to implementation, lessons learned, and ideas for further improvement. Ng and Colombani’s framework for selecting best practices in public health (2015) is used to organize key themes. RESULTS One Saturday each month, 20-30 patients and survivors gather with a traditional Ethiopian coffee ceremony. Participants report feelings of empowerment, hope, and confidence, a stronger sense of interconnectedness with others, and increased engagement in social activities. One notable success was the advocacy opportunity for the women to speak with hospital administrators and Ministry of Health officials at a BC Awareness Month celebration this year. Implementation challenges include a lack of funding, lack of a trained psychologist, and ethical uncertainty about distress caused when members die (not uncommon as patients typically present with advanced stage disease). Clinicians have learned important lessons about patients’ lay beliefs and consequently, patient counseling has been improved to incorporate topics of diet, sexuality, and pregnancy. CONCLUSION A first-of-its-kind BC patient and survivor support group improves perceived psychosocial well-being and quality of life for women in Ethiopia. The low-cost program shares promising practices for survivor support groups and patient-centered cancer treatment in low-resource contexts.

‘One-thousand miles and counting’: reflections on the trail to recovery

ABSTRACT While some studies have explored the effectiveness of self-directed participation in online support groups for survivors of cancer after treatment, there is a dearth of focus on participation in nontraditional support groups for extended periods of time, whether the individuals have ongoing treatment, metastatic cancer, or show no evidence of disease. This study is the second instalment of a longitudinal investigation into the benefits of a hiking programme for cancer survivors, four years after the original investigation. The purpose of the study is to determine whether participation in the hiking program contributes to members’ subjective sense of wellbeing and quality of life over the course of time.

Shared social identity and perceived social support among stroke groups during the COVID-19 pandemic: Relationship with psychosocial health.

Community‐based peer support groups for stroke survivors are common in the United Kingdom and aim to support rehabilitation. This study of 260 stroke survivors across 118 groups nationally used an online survey format, completed on average 3 months into the pandemic. Analysis of both quantitative and open‐ended responses provided insights into how stroke group members maintained contact during the COVID‐19 pandemic and how the group processes of shared social identity and perceived social support related to psychosocial outcomes (self‐esteem, well‐being and loneliness). Group members adapted to the pandemic early through telephone calls (61.6% of participants) and internet‐based contact (>70% of participants), although also showed a desire for greater contact with their groups. A stronger sense of shared social identity and perceptions of social support from the stroke groups were weakly associated with reductions in loneliness among members, and greater perceived social support was associated with higher self‐esteem. However, having poor health and living alone were more strongly associated with more negative psychosocial outcomes. The discussion considers how barriers to contact during pandemics can be managed, including access and use of online communication, limitations imposed by stroke‐related disability, and how the experience of feeling supported and social identification can be better nurtured within remote contexts.

Sobreviventes enlutados por suicídio e as possibilidades para posvenção no contexto da saúde pública brasileira

Abstract Death by suicide leaves many people negatively affected in its wake. Many so-called bereaved survivors will at some point need care and support, known as suicide postvention. This theoretical essay, based on the corresponding literature, institutional documents, and legal frameworks, seeks to discuss possibilities for suicide postvention within Brazilian public health. Suicide postvention is better structured internationally than in Brazil, which currently focuses on support groups for bereaved survivors centered in non-governmental organizations. We must look to territorial and community-based health services, like the Psychosocial Care Centers, and envisage affordable and resolute postvention actions, such as free prevention lines, early home visits, therapeutic listening and grief counseling.

Abstract PO-033: Qualitative analysis of the lifestyle programming preferences of Mexican-origin breast cancer survivors and cancer caregivers living on the U.S./Mexico border

Abstract Introduction: Hispanics face unique challenges after cancer treatment, including less cancer survivorship knowledge, lower quality of life, higher comorbid conditions, and socioeconomic disadvantages. Using a community-based participatory approach, we engaged in a qualitative exploration of lifestyle-related behaviors and behavior modifiers of Mexican-origin breast cancer survivors and their caregivers living in a border community to inform the development and implementation of an evidence-based lifestyle intervention to reduce cancer burden and metabolic co-morbidities. Methods: The study was conducted through a community-academic partnership (La Vida Plena) between the University of Arizona and Mariposa Community Health Center located on the Arizona/Mexico border. Eligibility criteria for cancer survivors included 1) self-identification as Hispanic and 2) cancer diagnosis in the previous 15 years. For cancer caregivers, eligibility criteria included 1) self-identification as a caregiver for an individual with cancer. Participants completed a questionnaire querying diet and physical activity behaviors pre- and post-cancer diagnosis. Semi-structured interviews included ten open-ended questions related to the impact of cancer on lifestyle, perceptions of lifestyle and health after cancer, and intervention content/delivery. Interviews were transcribed and analyzed using a deductive thematic approach grounded by the Cancer Survivorship Care Quality Framework. Results: A total of 23 participants were recruited with 19 (n=12 cancer survivors, n=7 caregivers) completing the study. Mean age was 55.6 ± 12.5 years and 41.1 ± 15.3 years for cancer survivors and caregivers, respectively. All survivors experience at least one comorbid condition with 58% experiencing 4 or more comorbid conditions. Key themes identified among cancer survivors included: 1) family as an influence on lifestyle behaviors; 2) perception of the Mexican diet as unhealthy; 3) financial barriers for a healthy lifestyle; 4) the role and challenges of physical activity after cancer treatment; 5) impact of physical effects of treatment on lifestyle behaviors; and 6) challenges to obtaining accurate health-related information. Key themes among caregivers included: 1) effects of the cancer experience on caregiver's lifestyle behaviors and 2) providing support to the survivor. Important considerations in adapting and developing lifestyle programming for border-dwelling cancer survivors include 1) access to content experts, 2) support with the management of physical symptoms, 3) inclusion of written materials, 4) incorporation of family in the program, and 5) inclusion of cancer survivor support groups. Conclusion: This study identified key concepts and themes important for the adaptation, development, and implementation of an evidence-based intervention supporting lifestyle behavior change to reduce the burden of cancer and comorbidities among cancer survivors and their caregivers living along the U.S./Mexico border. Citation Format: Samantha J. Werts, Melissa Lopez-Pentecost, Meghan Skiba, Rosi Vogel, Maia Ingram, Tatiana Enriquez, Lizzie Garcia, Cynthia Thomson. Qualitative analysis of the lifestyle programming preferences of Mexican-origin breast cancer survivors and cancer caregivers living on the U.S./Mexico border [abstract]. In: Proceedings of the AACR Virtual Conference: 14th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2021 Oct 6-8. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr PO-033.

Prevalence and risk factors for gastrointestinal symptoms after recovery from COVID-19.

BackgroundCOVID‐19 frequently presents with acute gastrointestinal (GI) symptoms, but it is unclear how common these symptoms are after recovery. The purpose of this study was to estimate the prevalence and characteristics of GI symptoms after COVID‐19.MethodsThe medical records of patients hospitalized with COVID‐19 between March 1 and June 30, 2020, were reviewed for the presence of GI symptoms at primary care follow‐up 1 to 6 months later. The prevalence of new GI symptoms was estimated, and risk factors were assessed. Additionally, an anonymous survey was used to determine the prevalence of new GI symptoms among online support groups for COVID‐19 survivors.Key ResultsAmong 147 patients without pre‐existing GI conditions, the most common GI symptoms at the time of hospitalization for COVID‐19 were diarrhea (23%), nausea/vomiting (21%), and abdominal pain (6.1%), and at a median follow‐up time of 106 days, the most common GI symptoms were abdominal pain (7.5%), constipation (6.8%), diarrhea (4.1%), and vomiting (4.1%), with 16% reporting at least one GI symptom at follow‐up (95% confidence interval 11 to 23%). Among 285 respondents to an online survey for self‐identified COVID‐19 survivors without pre‐existing GI symptoms, 113 (40%) reported new GI symptoms after COVID‐19 (95% CI 33.9 to 45.6%).Conclusion and inferencesAt a median of 106 days after discharge following hospitalization for COVID‐19, 16% of unselected patients reported new GI symptoms at follow‐up. 40% of patients from COVID survivor groups reported new GI symptoms. The ongoing GI effects of COVID‐19 after recovery require further study.

Abstract 430: Perceptions among African Americans of prostate cancer and clinical trials: A focus group study

Abstract Background: A disproportionally higher risk of chronic conditions such as cancer occurs among African Americans compared to other racial or ethnic groups. Among them, prostate cancer remains the most common cancer and the second leading cause of cancer deaths among African Americans, who are almost twice as likely to die of this disease compared to white men. In spite of this, in clinical trials for two of the most recent prostate cancer treatments, less than 10% of participants were African Americans. Improving clinical trial participation among African Americans is fundamental to reduce cancer health disparities knowing that their participation will significantly increase the state of knowledge regarding cancer treatment and survivability and ensure that African Americans can benefit from the newest therapies. Methods: A qualitative study was conducted with a two focus group of African American men and women (N=24), aged &amp;gt;50 who were cancer survivors, caregivers, and spouses of survivors from Los Angeles County. Focus groups were conducted virtually with one African American moderator for the women's group, and a male moderator for the men's group. The goal of these sessions was to assess participants' perceptions about cancer clinical trials, prostate cancer, and other health concerns, to identify leverage points to be used in future interventions to improve clinical trials participation rates. Results: Study findings underline doctors, health magazines, and survivor and cancer support groups as preferred sources to obtain health information. Men were less familiar with clinical trials than women, with several men expressing concerns about clinical trial participation due to a historical lack of trust, mentioning the Tuskegee Study as example. Both African American men and women expressed the importance of addressing the psychological impact of cancer as stated by “There is no health without mental health”, and their level of knowledge about prostate cancer and cancer in general varied although most had become more knowledgeable once diagnosed. Presence and companionship of wives or significant others were described for both men and women as key for men's support (“going to doctors' appointments”, “talking about health concerns such as erectile disfunction”, “when we talk about the issue it becomes less scary”). Conclusion: Cancer clinical trial participation among African Americans seems influenced by multiplicity of factors such as lack of trust, psychological impact of the disease, and family support. Addressing the lack of trust as well as the psychological impact of cancer in culturally sensitive ways may lead to improved perspectives about clinical trials, and facilitate and promote the participation of African Americans in clinical trials research. This in turn may help reduce the existing disparities in cancer survival in this population. Citation Format: Lourdes A. Baezconde-Garbanati, Carolina Aristizabal, Sandra Suther, Fern Webb, Mariana C. Stern. Perceptions among African Americans of prostate cancer and clinical trials: A focus group study [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2021; 2021 Apr 10-15 and May 17-21. Philadelphia (PA): AACR; Cancer Res 2021;81(13_Suppl):Abstract nr 430.