Professionally led support groups for people living with advanced or metastatic cancer: a systematic scoping review of effectiveness and factors critical to implementation success within real-world healthcare and community settings.

PURPOSE: To examine the effectiveness of professionally led support groups for people with advanced or metastatic cancer, and identify factors critical to implementation success within real-world settings. METHODS: Databases (MEDLINE; PsychINFO; CINAHL) and grey literature were searched for empirical publications and evaluations. Articles were screened for eligibility and data systematically extracted, charted and summarised using a modified scoping review methodology. Implementation factors were mapped using Proctor's implementation framework and the Consolidated Framework for Implementation Research 2.0. RESULTS: A total of 1691 publications were identified; 19 were eligible for inclusion (8 randomised controlled trials, 7 qualitative studies, 2 cohort studies, 2 mixed methods studies). Most (n=18) studies focused on tumour-specific support groups. Evidence supported professionally led support groups in reducing mood disturbances (n=5), distress (i.e. traumatic stress, depression) (n=4) and pain (n=2). Other benefits included social connectedness (n=6), addressing existential distress (n=5), information and knowledge (n=6), empowerment and sense of control (n=2), relationships with families (n=2) and communication with health professionals (n=2). Thirteen studies identified factors predicting successful adoption, implementation or sustainment, including acceptability (n=12; 63%), feasibility (n=6; 32%) and appropriateness (n=1; 5%). Key determinants of successful implementation included group leaders' skills/experience, mode of operation, travelling distance, group composition and membership and resourcing. CONCLUSIONS: Professionally led tumour-specific support groups demonstrate effectiveness in reducing mood disturbances, distress and pain among patients. Successful implementation hinges on factors such as leadership expertise, operational methods and resource allocation. IMPLICATIONS FOR CANCER SURVIVORS: Professionally led support groups may fill an important gap in supportive care for people with advanced or metastatic cancer.

Stakeholder perspectives on the impact of COVID-19 on oncology services: a qualitative study.

BACKGROUND: As COVID-19 spread across the globe, cancer services were required to rapidly pivot to minimise risks without compromising outcomes for patients or staff. The aim of this study was to document changes to oncology services as a result of COVID-19 from the perspectives of both providers and receivers of care during the initial phase of the pandemic. METHODS: Participants were recruited between June and December 2020 through an email invitation via professional or consumer organisations, two hospital-based oncology services and snowballing. Semi-structured interviews focused on health service changes and their impacts, which were then analysed by thematic analysis. RESULTS: Thirty-two patients, 16 carers and 29 health professionals were recruited. Fifteen patients (n = 47%) had localised disease, and 19 (n = 59%) were currently receiving treatment. Oncology staff included oncologists, palliative care physicians, nurses, allied health and psychosocial practitioners. Four themes arose from the data: safety, increased stress and burnout, communication challenges and quality of cancer care. CONCLUSIONS: There is an ongoing need for cancer-specific information from a single, trusted source to inform medical practitioners and patients/carers. More data are required to inform evidence-based guidelines for cancer care during future pandemics. All stakeholders require ongoing support to avoid stress and burnout.

Effect of core versus enhanced implementation strategies on adherence to a clinical pathway for managing anxiety and depression in cancer patients in routine care: a cluster randomised controlled trial.

BACKGROUND: Optimal strategies to facilitate implementation of evidence-based clinical pathways are unclear. We evaluated two implementation strategies (Core versus Enhanced) to facilitate implementation of a clinical pathway for the management of anxiety and depression in cancer patients (the ADAPT CP). METHODS: Twelve cancer services in NSW Australia were cluster randomised, stratified by service size, to the Core versus Enhanced implementation strategy. Each strategy was in place for 12 months, facilitating uptake of the ADAPT CP (the intervention being implemented). The Core strategy included a lead team with champions, staff training and awareness campaigns prior to implementation, plus access to feedback reports and telephone or online support during implementation. The Enhanced strategy included all Core supports plus monthly lead team meetings, and proactive, ongoing advice on managing barriers, staff training and awareness campaigns throughout implementation. All patients at participating sites were offered the ADAPT CP as part of routine care, and if agreeable, completed screening measures. They were allocated a severity step for anxiety/depression from one (minimal) to five (severe) and recommended management appropriate to their severity step. Multi-level mixed-effect regression analyses examined the effect of Core versus Enhanced implementation strategy on adherence to the ADAPT CP (binary primary outcome: adherent ≥ 70% of key ADAPT CP components achieved versus non-adherent < 70%), with continuous adherence as a secondary outcome. Interaction between study arm and anxiety/depression severity step was also explored. RESULTS: Of 1280 registered patients, 696 (54%) completed at least one screening. As patients were encouraged to re-screen, there were in total 1323 screening events (883 in Core and 440 in Enhanced services). The main effect of implementation strategy on adherence was non-significant in both binary and continuous analyses. Anxiety/depression step was significant, with adherence being higher for step 1 than for other steps (p = 0.001, OR = 0.05, 95% CI 0.02-0.10). The interaction between study arm and anxiety/depression step was significant (p = 0.02) in the continuous adherence analysis only: adherence was significantly higher (by 7.6% points (95% CI 0.08-15.1%) for step 3 in the Enhanced arm (p = .048) and trending to significance for step 4. DISCUSSION: These results support ongoing implementation effort for the first year of implementation to ensure successful uptake of new clinical pathways in over-burdened clinical services. TRIAL REGISTRATION: ANZCTR Registration: ACTRN12617000411347 (Trial registered 22/03/2017; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=372486&isReview=true ).

Barriers and enablers to implementing telehealth consultations in psycho-oncology.

OBJECTIVE: In response to the COVID-19 pandemic, use of telehealth to deliver care was recommended across the Australian health system. This study aims to explore the barriers and enablers to delivery of psycho-oncology services via telehealth and attitudes to use of telehealth in psycho-oncology. METHODS: Twenty-one psycho-oncology clinicians participated in semi-structured telephone interviews. Transcribed interviews were thematically analysed using the framework method. RESULTS: Three key themes were identified which described the overall experience of delivering psycho-oncology services via telehealth: (1) Context Matters-for whom is telehealth effective, when is it less effective; (2) Therapy content and telehealth implementation; (3) Recommendations for Sustainability. CONCLUSIONS: These insights into the barriers and enablers to delivering psycho-oncology services via telehealth inform future research and clinical practice. While there is support for the continued use of telehealth in psycho-oncology, there are significant improvements needed to ensure effective implementation and continued benefit.

Psychosocial well-being and supportive care needs of cancer patients and survivors living in rural or regional areas: a systematic review from 2010 to 2021.

PURPOSE: To summarise what is currently known about the psychosocial morbidity, experiences, and needs of people with cancer and their informal caregivers, who live in rural or regional areas of developed countries. METHODS: Eligible studies dating from August 2010 until May 2021 were identified through several online databases, including MEDLINE, EMBASE, PsychINFO, and RURAL (Rural and Remote Health Database). Results were reported according to the PRISMA guidelines and the protocol was registered on PROSPERO (CRD42020171764). RESULTS: Sixty-five studies were included in this review, including 20 qualitative studies, 41 quantitative studies, and 4 mixed methods studies. Qualitative research demonstrated that many unique psychosocial needs of rural people remain unmet, particularly relating to finances, travel, and accessing care. However, most (9/19) quantitative studies that compared rural and urban groups reported no significant differences in psychosocial needs, morbidity, or quality of life (QOL). Five quantitative studies reported poorer psychosocial outcomes (social and emotional functioning) in urban cancer survivors, while three highlighted poorer outcomes (physical functioning, role functioning, and self-reported mental health outcomes) in the rural group. CONCLUSION: Recent research shows that rural people affected by cancer have unique unmet psychosocial needs relating to rurality. However, there was little evidence that rural cancer survivors report greater unmet needs than their urban counterparts. This contrasts to the findings from a 2011 systematic review that found rural survivors consistently reported worse psychosocial outcomes. More population-based research is needed to establish whether uniquely rural unmet needs are due to general or cancer-specific factors.

The impact of cancer-related fertility concerns on current and future couple relationships: People with cancer and partner perspectives.

OBJECTIVE: The purpose of this study was to examine how cancer-related fertility concerns impact on couple relationships from the perspectives of people with cancer (PWC) and partners of people with cancer. METHODS: A qualitative research design was used, drawing data from open-ended responses to a survey and in-depth individual interviews. Eight hundred and seventy-eight PWC (693 women, 185 men) and 144 partners (82 women, 62 men), across a range of tumour types and age groups, completed a survey, and 78 PWC (61 women and 17 men) and 26 partners (13 women and 13 men), participated in semi-structured interviews. RESULTS: Thematic analysis identified that many PWC and partners experience a 'double burden', manifested by cancer-related fertility concerns creating relational stress, changes to couple sexual intimacy and feelings of inadequacy when forming new relationships. However, many participants adopted strategies to facilitate coping with infertility or fertility concerns. This included acceptance of infertility and privileging of survival, focusing on relationship growth, optimism and nurturing in other ways. CONCLUSION: Cancer-related fertility concerns can have a significant impact on couple relationships. Psychological support from clinicians may facilitate couple coping, as well as help to address concerns about future relationships for un-partnered people with cancer.

Barriers and facilitators to community-based psycho-oncology services: A qualitative study of health professionals' attitudes to the feasibility and acceptability of a shared care model.

OBJECTIVE: Psychological therapies combined with medication are effective treatments for depression and anxiety in patients with cancer. However, the psycho-oncology workforce is insufficient to meet patient need and is hard to access outside of the major cities. To bridge this gap, innovative models of care are required. Implementation of a new model of care requires attention to the facilitators and barriers. The aim of this study was to explore stakeholders' attitudes to the feasibility and acceptability of a community-based, shared care model for the treatment of depression and anxiety. METHODS: Semi-structured interviews were conducted with community-based clinical psychologists (n = 10), general practitioners (n = 6), and hospital-based psychologists working in psycho-oncology (n = 9). Framework analysis was conducted to identify key themes. RESULTS: All stakeholders perceived the model as feasible and acceptable. Potential barriers/facilitators to implementation were summarised under six key themes: (a) initiative, ownership, and autonomy; (b) resources; (c) pathway establishment; (d) support; (e) skill acquisition; and (f) patient engagement. Facilitators included quality communication between health professionals across primary and tertiary care and appropriate education and support for community-based clinicians. CONCLUSIONS: This in-depth exploration of Australian health professionals' perceptions of the feasibility and acceptability of a community-based model of psycho-oncology care revealed that most clinicians were willing to adopt the proposed changes into practice. An RCT of a shared care intervention for depressed patients with cancer is needed.

Is care really shared? A systematic review of collaborative care (shared care) interventions for adult cancer patients with depression.

BACKGROUND: Collaborative care involves active engagement of primary care and hospital physicians in shared care of patients beyond usual discharge summaries. This enhances community-based care and reduces dependence on specialists and hospitals. The model, successfully implemented in chronic care management, may have utility for treatment of depression in cancer. The aim of this systematic review was to identify components, delivery and roles and responsibilities within collaborative interventions for depression in the context of cancer. METHODS: Medline, PsycINFO, CINAHL, Embase, Cochrane Library and Central Register for Controlled Trials databases were searched to identify studies of randomised controlled trials comparing a treatment intervention that met the definition of collaborative model of depression care with usual care or other control condition. Studies of adult cancer patients with major depression or a non-bipolar depressive disorder published in English between 2005 and January 2018 were included. Cochrane checklist for risk of bias was completed (Study Prospero registration: CRD42018086515). RESULTS: Of 8 studies identified, none adhered to the definition of 'collaborative care'. Interventions delivered were multi-disciplinary, with care co-ordinated by nurses (n = 5) or social workers (n = 2) under the direction of psychiatrists (n = 7). Care was primarily delivered in cancer centres (n = 5). Care co-ordinators advised primary care physicians (GPs) of medication changes (n = 3) but few studies (n = 2) actively involved GPs in medication prescribing and management. CONCLUSIONS: This review highlighted joint participation of GPs and specialist care physicians in collaborative care depression management is promoted but not achieved in cancer care. Current models reflect hospital-based multi-disciplinary models of care. PROTOCOL REGISTRATION: The protocol for this systematic review has been registered with PROSPERO. The registration number is CRD42018086515.

The development of a template for psychological assessment of women considering risk-reducing or contralateral prophylactic mastectomy: A national Delphi consensus study.

OBJECTIVE: Risk-reducing mastectomies (RRM) and contralateral prophylactic mastectomies (CPM) are increasingly prevalent strategies to reduce breast cancer risk. Given the associated physical and emotional challenges, presurgical psychological assessment is frequently recommended for this population, yet limited research exists to guide this. This study aimed to reach a consensus on the most relevant content and format of a psychological consultation prior to RRM/CPM. METHODS: A modified two-round online Delphi study was conducted Australia-wide. Expert participants (n = 25), including psychologists, surgeons, nurses, oncologists, genetic specialists, and researchers completed a round-one survey, informed by a literature review, previous qualitative study and expert clinicians' input. This required participants to rate their agreement with 36 statements regarding potential content of a psychological consultation and provide feedback on format/structure. A round-two survey comprised items that had not reached consensus and six new items suggested by participants. Parameters for statement consensus were set a priori at >75% agreement. RESULTS: Expert participants indicated agreement with the majority of statements (39/42, 92.8%), endorsing that the assessment should include (1) patient understanding of the RRM/CPM procedure/cancer risk, (2) potential physical/emotional impact of surgery, (3) informed decision-making, and (4) past/current psychological issues (anxiety and body image). A provisional assessment template and user manual is provided. CONCLUSIONS: This research culminated in a consensus-based template to guide psychological assessment of women considering RRM/CPM. This enables health professionals to assess suitability for surgery and preempt challenges within a standardised framework. Future evaluation of the acceptability and effectiveness of the template in clinical settings is warranted.

A systematic review of women's satisfaction and regret following risk-reducing mastectomy.

OBJECTIVE: A systematic review of quantitative and qualitative studies, to describe patient satisfaction and regret associated with risk-reducing mastectomies (RRM), and the patient-reported factors associated with these among women at high risk of developing breast cancer. METHODS: Studies were identified using Medline, CINAHL, Embase and PsycInfo databases (1995-2016). Data were extracted and crosschecked for accuracy. Article quality was assessed using standardised criteria. RESULTS: Of the 1657 unique articles identified, 30 studies met the inclusion criteria (n=23 quantitative studies, n=3 qualitative studies, n=4 mixed-method studies). Studies included were cross-sectional (n=23) or retrospective (n=7). General satisfaction with RRM, decision satisfaction and aesthetic satisfaction were generally high, although some women expressed regret around their decision and dissatisfaction with their appearance. Factors associated with both patient satisfaction and regret included: post-operative complications, body image changes, psychological distress and perceived inadequacy of information. CONCLUSION: While satisfaction with RRM was generally high, some women had regrets and expressed dissatisfaction. Future research is needed to further explore RRM, and to investigate current satisfaction trends given the ongoing improvements to surgical and clinical practice. PRACTICE IMPLICATIONS: Offering pre-operative preparation, decisional support and continuous psychological input may help to facilitate satisfaction with this complex procedure.

An exploration of Australian psychologists' role in assessing women considering risk-reducing or contralateral prophylactic mastectomy.

OBJECTIVES: Given increasing rates of risk-reducing mastectomies (RRM) and contralateral prophylactic mastectomies (CPM), and the potentially significant psychological sequelae of this irreversible procedure, health professionals (HPs) regularly refer patients to psychologists for pre-operative assessment and support. This is the first study to provide qualitative insights from HPs into the role of psychologists who are working with women considering RRM or CPM. MATERIALS AND METHODS: 24 HPs (psychologists, surgeons, breast care nurses and genetic counsellors) experienced in treating patients before or after RRM/CPM completed semi-structured interviews (n = 15) or participated in a focus group (n = 10). Interviews were qualitatively analysed using Framework methods. RESULTS: Qualitative analysis revealed four interconnected themes: (1) perceived patient motivation to undergo RRM/CPM; (2) HP reasons for psychologist referral; (3) role of the psychologist; and (4) value of psychologist involvement. The reported psychologist role included: mental health assessment, checking understanding of information, ensuring informed decision-making, preparation for the procedure, and management of post-surgical challenges. CONCLUSION: Psychologists are perceived by HPs to have a key role in the multi-disciplinary care of patients considering RRM or CPM.

Burnout among psychosocial oncologists: an application and extension of the effort-reward imbalance model.

OBJECTIVES: Burnout is a significant problem among healthcare professionals working within the oncology setting. This study aimed to investigate predictors of emotional exhaustion (EE) and depersonalisation (DP) in psychosocial oncologists, through the application of the effort-reward imbalance (ERI) model with an additional focus on the role of meaningful work in the burnout process. METHODS: Psychosocial oncology clinicians (n = 417) in direct patient contact who were proficient in English were recruited from 10 international psychosocial oncology societies. Participants completed an online questionnaire, which included measures of demographic and work characteristics, EE and DP subscales of the Maslach Burnout Inventory-Human Services Survey, the Short Version ERI Questionnaire and the Work and Meaning Inventory. RESULTS: Higher effort and lower reward were both significantly associated with greater EE, although not DP. The interaction of higher effort and lower reward did not predict greater EE or DP. Overcommitment predicted both EE and DP but did not moderate the impact of effort and reward on burnout. Overall, the ERI model accounted for 33% of the variance in EE. Meaningful work significantly predicted both EE and DP but accounted for only 2% more of the variance in EE above and beyond the ERI model. CONCLUSIONS: The ERI was only partially supported as a useful framework for investigating burnout in psychosocial oncology professionals. Meaningful work may be a viable extension of the ERI model. Burnout among health professionals may be reduced by interventions aimed at increasing self-efficacy and changes to the supportive work environment.

An exploration of the prevalence and predictors of work-related well-being among psychosocial oncology professionals: An application of the job demands-resources model.

OBJECTIVE: Burnout is reportedly high among oncology healthcare workers. Psychosocial oncologists may be particularly vulnerable to burnout. However, their work engagement may also be high, counteracting stress in the workplace. This study aimed to document the prevalence of both burnout and work engagement, and the predictors of both, utilizing the job demands-resources (JD-R) model, within a sample of psychosocial oncologists. METHOD: Psychosocial-oncologist (N = 417) clinicians, recruited through 10 international and national psychosocial-oncology societies, completed an online questionnaire. Measures included demographic and work characteristics, burnout (the MBI-HSS Emotional Exhaustion (EE) and Depersonalization (DP) subscales), the Utrecht Work Engagement Scale, and measures of job demands and resources. RESULTS: High EE and DP was reported by 20.2 and 6.6% of participants, respectively, while 95.3% reported average to high work engagement. Lower levels of job resources and higher levels of job demands predicted greater burnout, as predicted by the JD-R model, but the predicted interaction between these characteristics and burnout was not significant. Higher levels of job resources predicted higher levels of work engagement. SIGNIFICANCE OF RESULTS: Burnout was surprisingly low and work engagement high in this sample. Nonetheless, one in five psychosocial oncologists have high EE. Our results suggest that both the positive (resources) and negative (demands) aspects of this work environment have an on impact burnout and engagement, offering opportunities for intervention. Theories such as the JD-R model can be useful in guiding research in this area.

Clinical pathway for the screening, assessment and management of anxiety and depression in adult cancer patients: Australian guidelines.

PURPOSE: A clinical pathway for anxiety and depression in adult cancer patients was developed to guide best practice in Australia. METHODS: The pathway was based on a rapid review of existing guidelines, systematic reviews and meta-analyses, stakeholder interviews, a Delphi process with 87 multidisciplinary stakeholders and input from a multidisciplinary advisory panel. RESULTS: The pathway recommends formalized routine screening for anxiety and depression in patients with cancer at key points in the patient's journey. The Edmonton Symptom Assessment System or distress thermometer with problem checklist is recommended as brief screening tools, combined with a more detailed tool, such as the Hospital Anxiety and Depression Scale, to identify possible cases. A structured clinical interview will be required to confirm diagnosis. When anxiety or depression is identified, it is recommended that one person in a treating team takes responsibility for coordinating appropriate assessment, referral and follow-up (not necessarily carrying these out themselves). A stepped care model of intervention is proposed, beginning with the least intensive available that is still likely to provide significant health gain. The exact intervention, treatment length and follow-up timelines, as well as professionals involved, are provided as a guide only. Each service should identify their own referral network based on local resources and current service structure, as well as patient preference. DISCUSSION: This clinical pathway will assist cancer services to design their own systems to detect and manage anxiety and depression in their patients, to improve the quality of care.

Talking about sex after cancer: a discourse analytic study of health care professional accounts of sexual communication with patients.

There is consistent evidence that health care professionals (hcps) are not addressing the sexual information and support needs of people with cancer. Thirty-eight Australian hcps across a range of professions working in cancer care were interviewed, to examine constructions of sexuality post-cancer, the subject positions adopted in relation to sexual communication, and the ways in which discourses and subject positions shape information provision and communication about sexuality. Participants constructed sexual changes post-cancer in physical, psychological and relational terms, and positioned such changes as having the potential to significantly impact on patient and partner well-being. This was associated with widespread adoption of a discourse of psychosocial support, which legitimated discussion of sexual changes within a clinical consultation, to alleviate distress, dispel myths and facilitate renegotiation of sexual practices. However, this did not necessarily translate into patient-centred practice outcomes, with the majority of participants positioning personal, patient-centred and situational factors as barriers to the discussion of sex within many clinical consultations. This included: absence of knowledge, confidence and comfort; positioning sex as irrelevant or inappropriate for some people; and limitations of the clinical context. In contrast, those who did routinely discuss sexuality adopted a subject position of agency, responsibility and confidence.

The development of novel interventions to assist the leaders of cancer support groups.

PURPOSE: The literature on cancer support groups supports the provision of ongoing education and training for cancer support group leaders, with evidence suggesting that more skilled and experienced leaders create better outcomes for group members. To address support and training needs reported by leaders, three novel interventions were developed and pilot-tested. These included a leaders' website and discussion forum, DVD and manual, and a 2-day training workshop. METHODS: The interventions were developed using a combination of literature review, expert consensus, and consumer feedback. A convenience sample of ten leaders pilot-tested the Website and discussion forum. Using a mixed-method approach, evaluation of the workshop and the DVD and manual was conducted with 35 leaders. RESULTS: Overall, satisfaction with all aspects of the Website and discussion forum was high. Analysis of the quantitative data revealed extremely high satisfaction with the workshop and DVD and manual. The qualitative responses of workshop participants further supported the quantitative findings with enhanced knowledge, understanding, and confidence reported by leaders. CONCLUSIONS: All three interventions exhibited a high degree of user acceptance, regardless of the skill or experience of the cancer support group leader. The overall positive findings from the evaluation of the leader Website and discussion forum, the DVD and manual, and the workshop for cancer support group leaders provides evidence to support more rigorous evaluation of these resources in a randomized controlled trial.

Positive and negative interactions with health professionals: a qualitative investigation of the experiences of informal cancer carers.

BACKGROUND: Empathic and informative interactions with health professionals are important for the well-being of people with cancer. However, there is a dearth of research examining the construction and experience of interactions with health professionals from the perspective of informal cancer carers. OBJECTIVE: The aim of this study was to explore how cancer carers subjectively position their experiences of interactions with health professionals, in particular, their construction of experiences as positive or negative, and the perceived consequences of such interactions. Positioning theory is used to examine how the sociomedical construction of health professionals shapes carers' experiences of interactions with them. METHOD: Semistructured interviews were carried out with 53 informal cancer carers across a range of cancer types and stages, analyzed using thematic decomposition. RESULTS: Carers positioned positive interactions as those involving health professionals who were warm and genuine, accessible and approachable, and who made carers feel accepted and comfortable. In the case of allied health professionals, the provision of a space for carers' cathartic release was also constructed positively. Negative interactions were positioned as those involving poor communication and a lack of empathy, poor or absent information provision, and absence of guidance about additional support. CONCLUSIONS: Positive experiences with health professionals were positioned by carers as leading to feelings of empowerment, value, and recognition, and negative interactions as leading to distress, anger, frustration, and feelings of isolation. IMPLICATIONS FOR PRACTICE: It is important for health professionals to be supportive of carers' needs, to communicate in an empathic manner, to be approachable and accessible, and to recognize carers needs and concerns.

Exploring the impact of training on the experience of Australian support group leaders: current practices and implications for research.

BACKGROUND: Existing literature suggests that the effectiveness of a support group is linked to the qualifications, skills and experience of the group leader. Yet, little research has been conducted into the experiences of trained vs. untrained support group leaders of chronic-illness support groups. The current study aimed to compare the experience of leaders, trained vs. untrained in group facilitation, in terms of challenges, rewards and psychological wellbeing. METHODS: A total of 358 Australian leaders of cancer and multiple sclerosis (MS) support groups, recruited through State Cancer Councils and the MS society (response rate of 66%), completed a mailed survey. RESULTS: Compared with untrained leaders, those with training were significantly younger, leading smaller groups and facilitating more groups, more frequently (all P < 0.05). Trained leaders were more likely to be female, educated beyond high school, paid to facilitate, a recipient of formal supervision and more experienced (in years) (all P < 0.01). Untrained leaders reported more challenges than trained leaders (P < 0.03), particularly struggling with being contacted outside of group meetings (52%) and a lack of leadership training (47%). Regardless of level of training, leaders identified a number of unmet support and training needs. Overwhelmingly, leaders found their facilitation role rewarding and the majority reported a high level of psychological wellbeing. CONCLUSIONS: Group facilitator training has the potential to reduce the burden of support group leadership. Developing interventions to assist support group leaders will be particularly beneficial for leaders with minimal or no training group facilitation training.