Patient Support Groups Research Articles

Celiac disease care differs significantly between high- and low-middle-income countries: a global survey of celiac experts from 63 countries.

Celiac disease (CeD) is increasingly diagnosed but significant disparities exist in awareness, practices, resources, and legislation worldwide. We conducted a global online survey with CeD experts to assess this disparity internationally. A 55 questions survey encompassing nine domains relevant to CeD care (awareness, gluten-free [GF] foods availability/cost/quality, GF labeling, CeD dietician availability, insurance for CeD patients, medical training, research funding, patient support groups, and unmet needs) was generated and sent to CeD experts worldwide electronically. Countries were stratified based on per capita income as high-income (HIC) and lower-income countries (LIC) (including upper-middle-, lower-middle-, and low-income countries). Survey responses were summarized as a single score using principal component analysis. Valid responses were obtained from 131(37.4%) [HIC: 71; LIC: 60] of contacted CeD experts from 63 countries. Compared with HIC, LIC experts perceived worse availability (HIC:80% vs LIC: 47%; P<0.001), quality (52% vs 20%; P<0.001), and legislation for labeling of GF foods (82% vs 37%; P<0.001), with unfavorable reimbursement policies (27% vs 12%; P=0.002), subsidies (32% vs 13%; P<0.001), and insurance (76% vs 43%; P<0.001) for CeD patients. LIC also lacked awareness about CeD among general physicians (69% vs 32%; P<0.001), trained celiac dieticians (39% vs 12%; P=0.002), and active CeD patient support groups (93% vs 50%; P<0.001). All experts believed that GF foods were costly (94% vs 87%), frequently contaminated (27% vs 32%), and unfavorably taxed (97% and 93%). The experts agreed on key unmet needs and better research funding. Overall CeD preparedness score (median 58.3 vs 33.0; P<0.001) was also associated with income. The present survey highlights the opinion of global experts on the challenges, opportunities, and preparedness related to CeD and differences worldwide by income.

The journey to diagnosis of wild-type transthyretin-mediated (ATTRwt) amyloidosis: a path with multisystem involvement

BackgroundWild-type and hereditary transthyretin-mediated amyloidosis (ATTRwt and ATTRv amyloidosis, respectively) are progressive, fatal diseases with a broad range of clinical presentations and multisystem effects. Despite having a higher prevalence, ATTRwt amyloidosis is less well characterized due to its non-hereditary nature, and its relatively poorer disease awareness delays diagnosis. Understanding of its natural history has evolved in recent years, but this is largely based on physician-collected data rather than patients’ reports of their own experiences. A mixed methods approach was used to evaluate how the healthcare journeys of patients with ATTRv and ATTRwt amyloidosis compare.MethodsA quantitative survey was administered to US-patients diagnosed with both ATTRwt amyloidosis and ATTRv amyloidosis identified through a patient support group. Subsequent in-depth interviews with participants with ATTRwt amyloidosis were conducted. Quantitative data with related qualitative quotes from patients were produced to characterize their paths to diagnosis and the disease burden experienced.ResultsA total of 47 respondents completed the survey (ATTRv, n = 20 and ATTRwt, n = 27) and a total of 14 survey respondents with ATTRwt amyloidosis were interviewed. Survey results reported a high disease burden for patients with both conditions, with patients with ATTRwt amyloidosis reporting more diagnoses and procedures prior to their final diagnosis. Interviews with participants with ATTRwt amyloidosis revealed that patients face a high symptomatic burden of disease. Diagnosis was often delayed due to three key factors: (1) early signs of ATTRwt amyloidosis were often assumed to be related to old age; (2) many medical specialists working in silos were involved in participants’ diagnostic; and (3) there was a general lack of disease awareness. Early indicators such as carpal tunnel syndrome were often overlooked. Participants were typically diagnosed after the disease had progressed to include severe cardiac symptoms such as atrial fibrillation and severe shortness of breath. Sleep apnoea was also reported by a number of participants, with a considerable impact on quality of life.ConclusionsOur study provides insight into the overall impact of the patient journey on their quality of life and demonstrates how increased awareness of ATTRwt amyloidosis and more coordinated engagement with physicians could reduce the time to diagnosis.

Society for endocrinology guideline for understanding, diagnosing and treating female hypogonadism.

Female hypogonadism (FH) is a relatively common endocrine disorder in women of premenopausal age, but there are significant uncertainties and wide variation in its management. Most current guidelines are monospecialty and only address premature ovarian insufficiency (POI); some allude to management in very brief and general terms, and most rely upon the extrapolation of evidence from the studies relating to physiological estrogen deficiency in postmenopausal women. The Society for Endocrinology commissioned new guidance to provide all care providers with a multidisciplinary perspective on managing patients with all forms of FH. It has been compiled using expertise from Endocrinology, Primary Care, Gynaecology and Reproductive Health practices, with contributions from expert patients and a patient support group, to help clinicians best manage FH resulting from both POI and hypothalamo-pituitary disorders, whether organic or functional.

E-Learning Modules for the Care of Caregivers of Older Filipinos

As the population ages, so does the challenge to the care of older people with mental health problems. Geriatric syndromes such as delirium, dementia, and depression are amenable to medical management. Beyond care of the patient, however, is care for the caregiver. Behavioral and Psychological symptoms of Dementia (BPSD) such as agitation, aggression, and delusions increase the risk of caregiver stress. This may lead to strain of individual carers and household members, increasing the patient’s risk for poor care, abuse, or institutionalization. Caregiver education and skills training help reduce the level of caregiver stress. These are usually delivered face to face during clinic visits or training modules by dementia care professionals. However, remote alternatives for education, learning and counselling became essential during the COVID-19 pandemic. E-workbooks and online learning modules on dementia, delirium, and depression written by professionals in the Philippines and Asia Pacific are available. An example is the Dementia Community Toolkit in English and its Filipino adaptation. The latter was developed by the Institute on Aging, National Institutes of Health, University of the Philippines Manila, with support from the Mental Health Unit of WHO WPRO. Patient support groups such as the Alzheimer’s Disease Association of the Philippines likewise developed online learning materials. These were and are still freely available via their websites and the webinars have been uploaded in internet and social media sites. The efficacy and acceptability of remote education to reduce informal caregiver burden, negative mood, and quality of life was published in a Cochrane meta-analysis. The authors analyzed experimental trials on information, training, or support compared to usual treatment, waitlist, or attention controls. Following several eligibility criteria, they identified 26 studies with 2367 participants in their review. Although most studies were of low quality and had uncertain risks of bias, there was small evidence that training plus support modules resulted in an improvement of caregiver knowledge. Training alone had no benefit on knowledge. Furthermore, there was no significant effect on patient institutionalization, caregiver burden depression, or quality of life. The article on E-Learning on knowledge on the 3Ds of Geriatric Psychiatry is a good start in understanding the capacity of well-educated Filipino caregivers to improve their knowledge on the subject. Beyond individual knowledge, E-learning modules have the capacity to guide families and communities in reducing ageism and improve patient care for older people with dementia, depression, and delirium. Further experimental studies are needed using locally developed modules. The bigger challenge is accessibility and acceptability of remote learning materials for the greater majority of informal caregivers with lower levels of education and poor access to online resources.

Use of a Facebook Support Group for Kidney Transplant Patients

Background: Facebook groups have been used to foster social support of transplant patients. Examining the use and content strategies for generating member interactions within transplant-specific groups can inform how we leverage these groups to expand access to social support resources. This study characterizes the use of a closed Facebook group for kidney transplant patient support linked to a hospital in Buffalo, NY to identify the most engaging content. Methods: The sample consisted of 387 individuals (372 patients/family, eight transplant professionals, and seven community advocates) and the administrator. Content analysis was conducted of posts and comments made to the group. Descriptive measures of post content associated with interactions (reactions and comments) were computed. Results: Between 5/2020 and 5/2023, there were 484 posts with 8233 interactions (2793 comments, 5440 reactions). Half of the posts (n = 241) were made by the administrator, 166 (34%) by patients/family, 70 (14%) by community advocates, and 7 (1%) by transplant professionals. Content analysis revealed that post types with the most interactions were personal experiences, monthly transplant volume, and monthly new members added; the least interactions involved posts about holidays, observances, and information. Conclusions: The interaction metrics varied according to the content strategies used by members and provided insights into the types of content members interact with.

Relationship Between Social Isolation, Loneliness and Psychological Well-Being in Inflammatory Bowel Disease Patients: The Mediating Role of Disease Activity Social Isolation in Inflammatory Bowel Disease.

To evaluate the relationship between social isolation, loneliness and psychological well-being in patients with inflammatory bowel disease (IBD). Additionally, we examined the mediating effect of disease activity on the relationships between social isolation, loneliness and psychological well-being. Cross-sectional descriptive study. A total of 218 participants were recruited from outpatient clinic at a university hospital in Turkey and from the community membership of the patient support group. Participants provided their socio-demographic and disease-related information and completed (online and paper based) the Turkish Lubben Social Network Scale-6, the Turkish UCLA Loneliness Scale Short Form and the Turkish Psychological Well-being Scale. The data were analysed using univariate linear regression analysis. This study adhered to the STROBE checklist for reporting. The majority of the participants (72%) were socially isolated, and over half (54.1%) reported moderate to high levels of loneliness. Participants also had low psychological well-being. Linear regression analysis revealed that high loneliness level and social isolation were negative predictors of psychological well-being. The results revealed that the effect of social isolation and loneliness on psychological well-being was mediated by disease activity. In line with the findings, it can be recommended to enhance social support and networks, along with regular psychological evaluation, should be integrated into the holistic care approach for IBD patients. The findings of this study hold significant implications for the management and support of patients with IBD, particularly within clinical settings in Turkey. Patients were invited to complete questionnaires. The investigators explained the study's content and purpose, and addressed any concerns during the data collection process.

Influence of Interpretation on Patient-Healthcare Provider Communication and Management of Chronic Conditions in Kenya: A Case of JOOTRH Hospital Kisumu

The Ministry of Health in Kenya projects that deaths from chronic conditions will increase by 65% by 2030. To efficiently manage chronic illnesses, effective communication between patients and healthcare providers is of crucial importance. However, studies have shown that many patients lack knowledge about their conditions and the treatment processes. This study investigated the experiences of patients and caregivers while communicating with healthcare-providers on management of chronic conditions. The study was undertaken at the Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) in Kisumu County, Kenya. It adopted the relativist-interpretivist paradigm and qualitative approach to generate and analyze data. Purposive and snowball sampling techniques were used to identify 10 patients and 5 caregivers who were drawn from patient support groups at the hospital. 10 healthcare providers were sampled. Data was generated through in-depth interviews and focus group discussions which were transcribed and analyzed using a thematic approach. Study findings indicate that healthcare providers were knowledgeable and believed that patients needed to be given relevant information. English was the main language used by health providers, which often created a language barrier among patients and caregivers who did not understand the language. This created opportunities for misinformation when interpreters were used. The hospital lacked trained interpreters, hence caregivers and hospital staff acted as interpreters. This was found to affect patients’ privacy and disclosure, especially where the patient did not want their health information to be accessed by a third party. Patients felt the information they received to be inadequate.

Impact of Various Treatment Modalities on Long-Term Quality of Life in Cervical Cancer Survivors.

Introduction Given treatment advancements and the long life expectancy of mostly young patients with cervical cancer, their post-treatment quality of life (QoL) is essential to consider. This study aimed to evaluate the long-term QoL in cervical cancer survivors treated with various approaches. Methods We conducted a cross-sectional survey-based study using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC-QLQ-C30) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Cervical Cancer Module 24 (EORTC-QLQ-CX24) questionnaires and involved members of the online cervical cancer patient support group (01/2024-02/2024). Eligible participants were ≥18 years old, diagnosed with stage IA2-IIB cervical cancer, and had completed their treatment. Respondents were stratified into four management groups: neoadjuvant chemotherapy + surgery +/- radiation therapy (RT), surgery + RT, RT alone, and surgery alone. Results Overall, 173 patients participated: 20 (11.6%) received neoadjuvant chemotherapy + surgery +/- RT, 50 (28.9%) had surgery + RT, 69 (39.9%) had RT alone, and 34 (19.7%) had surgery alone. Patients after surgery alone had significantly better global QoL (p<0.001). Their physical (p<0.001), role (p=0.037), emotional (p=0.024), and social (p=0.006) functioning were also substantially better. This group also reported the lowest severity of fatigue (p=0.001), nausea and vomiting (p<0.001), and diarrhea (p<0.001). Sexual functioning was better in the surgery-alone group in almost all aspects. There were no major differences in QoL among the groups, receiving RT alone or combined with other treatments. Conclusions Cervical cancer survivors who underwent surgery alone reported the highest QoL and lower symptom intensity compared to those treated with RT or treatment combinations. RT combined with other modalities did not appear to substantially decrease QoL compared to RT alone.

Over 25 Years of Hope: Development of Lymphatic Filariasis Patient Support Groups in Haiti.

Support groups can create environments that are conducive to healing and well-being, particularly for persons with stigmatizing chronic diseases. In 1998, the support group concept was adapted in Haiti for persons with disabling lymphedema caused by lymphatic filariasis (LF). The project was developed with the expectation that the support group model conceived in the developed world be interpreted and modified by persons affected with lymphedema in the Haitian setting. Initiated with modest financial support within a research initiative to eliminate LF, a total of 50 "Hope Clubs" were formed from 1998 to 2023 across seven communes (districts) located in 3 of Haiti's 10 regional Departments. Documented benefits of the support groups included improved limb self-care, decreased incidence of inflammatory episodes (adenolymphangitis), enhanced self-efficacy, economic benefit through microenterprise, and improved quality of life. Despite challenges of funding shortfalls, natural disasters, and political insecurity, persistence of LF support groups in Haiti highlights the crucial role of group ownership by affected persons and the freedom to reinvent the support group concept in light of local social, cultural, and economic conditions.

Myositis India: Early lessons from a patient support group in a resource‐limited setting

Myositis India: Early lessons from a patient support group in a resource‐limited setting

Patient and Caregiver Experience of Accessing Information on Hidradenitis Suppurativa through Social Media.

This study demonstrates that individuals with HS are actively seeking information regarding the condition online. It also highlights the valuable contribution of patient support groups and raises the question of whether there is a role for dermatologists to contribute through such channels of communication in the future to support the dissemination of verified information.

Self-care styles of patients with chronic obstructive pulmonary disease: A mixed methods case study

BackgroundIn people affected by chronic obstructive pulmonary disease (COPD), self-care is crucial for improving quality of life, decreasing symptom burden, and reducing health care-related costs. Unlike other chronic conditions, little is known about the factors that influence different self-care styles in COPD patients. ObjectivesTo explore the factors that could influence the self-care styles of patients with COPD. MethodsA mixed methods case study design was used. Quantitative and qualitative data were collected at the same stage in a purposive sample of patients with COPD through questionnaires, interviews, and focus groups. Data were analyzed separately and then integrated to compare the cases. ResultsThirty-seven patients with COPD were recruited from an outpatient clinic, pulmonary rehabilitation unit and online in a patient support group. On average, participants scored below the level of adequacy in all self-care dimensions. Self-care maintenance was influenced by patient age, education level, and economic status. Most participants reported performing self-care behaviors, while some did not because they found it difficult or because they did not recognize their importance. When the quantitative and qualitative data of patients with higher and lower levels of self-care were integrated, four different styles of self-care were identified according to COPD severity, psychological distress and level of self-efficacy: proactive, inactive, reactive, and hypoactive. ConclusionsPersonal, clinical, psychological, and social factors not only influence the level of self-care performed by COPD patients but also contribute to the understanding of different self-care styles. This knowledge could support health care professionals in tailoring educational interventions.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Impact on Quality of Life (QoL) of Persons with ME/CFS.

Background and Objectives: We previously reported on the impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the QoL of persons with ME/CFS and their family members. Here, we present the findings of the impact on the QoL of individuals with ME/CFS whose family members did not participate in the survey. Materials and Methods: A prospective multinational online survey was disseminated via patient charities, support groups and social media. Persons with ME/CFS completed the EuroQoL questionnaire (EQ-5D-3L). Results: Data were analysed from 876 participants from 26 countries who reported a health care professional diagnosis of ME/CFS. In total, 742 participants identified as female, 124 male and 10 preferred not to say. The mean age of the participants was 47 years (range 18-82), and the mean time to diagnosis was 14 years. The mean overall health status on a visual analogue scale for people with ME/CFS was 36.4 (100 = best health). People with ME/CFS were most often affected by inability to perform usual activities (n = 852, 97%), followed by pain (n = 809, 92%), impaired mobility (n = 724, 83%), difficulty in self-care (n = 561, 64%) and least often affected by anxiety and depression (n = 540, 62%). Conclusions: The QoL of people with ME/CFS is significantly affected globally. There was no significant difference in quality of life compared with previously published data on those with ME/CFS who did have a family member complete the family member quality of life questionnaire (FROM16). Contrary to popular misconception, anxiety and depression are the least often affected areas in persons with ME/CFS who are most impacted by their inability to perform usual activities.

Online Support Group For Chronic Disease Patients in The Context of Health Communication on Social Media

In the context of health communication, support groups are believed to act as a protective measure against detrimental physical and psychological effects for patients by promoting adaptation both endocrinologically (related to hormones), cognitively, and behaviorally. Such adaptation also brings benefits in enhancing the immune system, adherence to medication consumption, and improving patient health. Support groups are crucial for patients, especially those with similar conditions, as there is a higher level of empathy, mutual information sharing, messages of hope and inspiration, and a platform for expression to enhance the life expectancy of patients with chronic diseases. These support groups emerged since the 1970s, constituting an integral component of healthcare. The existence of support groups is closely linked to helping improve health outcomes and reduce patient mortality rates. The diagnosis given by doctors to individuals can be a traumatic event. In such conditions, effective support systems are needed. These support systems can include friends, family, doctors, or other patients who have experienced similar illnesses. The similarity among members of the support group makes them a "support system" capable of providing both physical and psychological benefits and increasing adherence to the treatment process. The difficulties experienced by patients and their families in managing chronic diseases become highly complex when they do not receive support from their social environment. This motivates the existence of online support groups, which provide them with the flexibility to exchange information and discuss their health problems. To achieve the goals of this research, the researcher used content analysis with the object being the posts of HGM Community from September to December 2022, while the unit of analysis used was proportional analysis unit. This research found that the most frequently used form of support by group members was instrumental support. The results from 149 posts in HGM Community posts obtained in this study showed that instrumental support with the category of "problem-solving" was the most commonly found.

Sickle cell anaemia control mission: Implementation of a comprehensive care model in Anuppur, Madhya Pradesh.

Background & objectives Sickle cell disease (SCD) is a common genetic disorder, predominantly found in the tribal population of India. The examples of models providing comprehensive care and management to individuals with SCD in public health facilities are sparse. The Sickle Cell Anaemia Control Mission is one such model implemented by Jan Swasthya Sahyog, a non-profit organization in collaboration with the National Health Mission in the Anuppur district of Madhya Pradesh. This article aimed to identify the key learnings from this programme that can guide the public health system strengthening with respect to SCD. Methods The Sickle Cell Anemia Control Mission Programme included door to door screening for anaemia, SCD and blood group. SCD cases were included in the programme and other individuals with Anemia were referred for further care. Care for individuals with SCD included counselling, provision of hydroxyurea, regular follow up of clinical parameters and management of complications. Care for individuals with SCD was provided through monthly patient support group (PSG) meetings and regular outpatient /in-patient care at public health facilities. Quantitative data on programme design, screening and patient management collected during programme implementation were used for analysis. Results A total of 39421 persons were screened in 18 months (August 2018-March 2020). Of these 81.9 per cent persons were anaemic, 16.9 per cent had sickle cell trait and 779 (1.98%) had SCD. Eighty-six already diagnosed individuals joined the programme for care. People from all caste categories were diagnosed with SCD. Out of 865 individuals with SCD, 157 underwent regular 9-11 months follow up and showed improvement in clinical symptoms and drug compliance. Interpretation & conclusions Central India has a significant burden of anaemia and SCD. This study found that SCD is present in non-tribals as well. PSGs are an efficient way to deliver non-emergency care for chronic diseases such as SCD.

Focus groups in the metaverse: shared virtual spaces for patients, clinicians, and researchers

Patient focus groups can be invaluable for facilitating user-centered design of medical devices and new technologies, effectively capturing the richness and depth of patient experiences to help thoroughly assess feasibility, tolerance, and usability. While the metaverse holds promise for healthcare applications, its use in patient focus groups remains unexplored. In this Perspective we discuss the potential of the metaverse for conducting focus groups with patients. The theme of the focus group was the design and development of a therapeutic virtual reality application for patients with chronic low back pain. We carried out a pilot study comparing a focus group in a shared virtual space versus a physical location. This experience was positively received by patients, researchers, and clinicians, suggesting the metaverse is a viable medium for conducting these meetings and has potential advantages for remotely located participants, opening the doors for future expansion beyond focus groups to encompass all kinds of patient support and information groups. This approach fosters patient-centered healthcare by helping to facilitate patient voices directly into the design process, which may help lead to improved healthcare delivery, patient satisfaction, and treatment outcomes.

Genetic therapies for cardiomyopathy: survey of attitudes of the patient community for the CureHeart project

Cardiomyopathies are a group of inherited heart muscle disorders. Expressivity is variable and while sometimes mild, complications can result in sudden cardiac death (SCD) at any age, heart failure and stroke. In around a third of patients a monogenic cause is identifiable, and development of genetic therapies that aim to correct the underlying genetic defect is underway. Here we describe results of a survey designed to understand preliminary views of the patient community about genetic therapies in the context of disease burden. The internet survey was publicized with a bespoke information video via patient support groups in the UK and USA; 634 people responded of whom 96% had a personal and/or family history of cardiomyopathy. Findings show that concern about cardiomyopathy-related issues with a future dimension, such as disease progression, is significantly greater than concern about current issues. A total of 93.6% thought that genetic therapies should be developed for cardiomyopathy. A majority would consider participation in a genetic therapy trial in six scenarios varying by age and clinical situation significantly more in the scenario of an adult with symptomatic disease and evident progression than an asymptomatic adult with SCD risk, or a child. In all scenarios, a majority said that the chance genetic therapy would stop or slow progression, and risk of serious adverse and unintended effects, were important considerations. Qualitative analysis of free-text responses found that concern was often informed by family experience. Patient consideration of genetic therapy is likely to require individualized assessment of the benefits and risks.

Protocol for the development of a core outcome set for clinical trials in primary sclerosing cholangitis

BackgroundPrimary sclerosing cholangitis (PSC) is a progressive immune-mediated liver disease, for which no medical therapy has been shown to slow disease progression. However, the horizon for new therapies is encouraging,...

Adherence to Hidradenitis Suppurativa Treatment.

Hidradenitis suppurativa (HS) is a chronic, debilitating skin condition that requires multimodal treatment. Adherence remains a significant challenge for many patients due to complex nature of treatment, thus presenting a barrier to management success. This review summarizes the current literature on the factors associated with adherence to medications, and lifestyle behaviors in patients with HS and proposes strategies to improve adherence. In February 2023, a systematic literature search was conducted by two independent authors on PubMed and EMBASE for articles from 2000 to 2023 on hidradenitis suppurativa adherence. A total of 21 articles met inclusion/exclusion criteria for this review. Of the studies, 11 addressed systemic medication adherence, 3 addressed topical medication adherence, 2 addressed both systemic and topical medication adherence, and 5 addressed lifestyle/behavioral modification adherence. The generalizability of results was limited by differences in study design, outcome measures, and sample size. English-only articles with full texts were used. The most reported reasons for non-adherence included presence of side effects, cost of medications, low efficacy, and unclear instructions. Proposed strategies to improve adherence in HS patients include management of side effects, use of reminder systems, improved patient education, patient support groups, aid of family and caregivers, personalization of the medication regimen, and regular follow-ups with patients. PROSPERO Registration Number: CRD42023488549.

Perceived benefits of patient support groups and their format for people with an implantable cardioverter defibrillator

BackgroundSupport groups for people with Implantable Cardioverter Defibrillators (ICDs) are widely used, however, it is not clear what people with ICDs gain from a support group or what format they should take. ObjectivesThe aim of the present study is to define the perceived benefit of ICD support groups and develop practical recommendations for group format. Methods14 individuals with ICDs were interviewed using a semi-structured interview guide. Reflexive thematic analysis methods were utilised to code and analyse the transcripts before generating themes. ResultsFour themes were defined: confronting mortality, coping through sharing, coping through learning, and providing space. Making connections with other people with ICDs, reassurance, access to information, and advice from health care professionals were important perceived benefits of the support group. ConclusionPeople with ICDs may have to confront their own mortality and adapt to considerable life changes after implant. The findings from the present study have improved understanding of how support groups are perceived and how ICD indication and group format influence the experience. A blended format of in-person community meetings, online forums, HCP-led education and space for person-person interaction is recommended. Importantly, provision of support should not be time-limited to allow people to access it when it most likely to be of benefit to them.