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.

Challenges and solutions to cancer-related financial toxicity according to Australian health professionals: qualitative results from a national survey.

PURPOSE: To qualitatively explore Australian healthcare professionals' perspectives on how to improve the care and management of cancer-related financial toxicity, including relevant practices, services, and unmet needs. METHODS: We invited healthcare professionals (HCP) who currently provide care to people with cancer within their role to complete an online survey, which was distributed via the networks of Australian clinical oncology professional associations/organisations. The survey was developed by the Clinical Oncology Society of Australia's Financial Toxicity Working Group and contained 12 open-ended items which we analysed using descriptive content analysis and NVivo software. RESULTS: HCPs (n = 277) believed that identifying and addressing financial concerns within routine cancer care was important and most believed this to be the responsibility of all HCP involved in the patient's care. However, financial toxicity was viewed as a "blind spot" within a medical model of healthcare, with a lack of services, resources, and training identified as barriers to care. Social workers reported assessment and advocacy were part of their role, but many reported lacking formal training and understanding of financial complexities/laws. HCPs reported positive attitudes towards transparent discussions of costs and actioning cost-reduction strategies within their control, but feelings of helplessness when they perceived no solution was available. CONCLUSION: Identifying financial needs and providing transparent information about cancer-related costs was viewed as a cross-disciplinary responsibility, however, a lack of training and services limited the provision of support. Increased cancer-specific financial counselling and advocacy, via dedicated roles or developing HCPs' skills, is urgently needed within the healthcare system.

Opinions and strategies of Australian health professionals on tackling cancer-related financial toxicity: A nationwide survey.

AIM: To understand the opinions and current practices of health professionals on the topic of addressing cancer-related financial toxicity among patients. METHODS: A cross-sectional online survey was distributed through Australian clinical oncology professional organizations/networks. The multidisciplinary Clinical Oncology Society of Australia Financial Toxicity Working Group developed 25 questions relating to the frequency and comfort levels of patient-clinician discussions, opinions about their role, strategies used, and barriers to providing solutions for patients. Descriptive statistics were used and subgroup analyses were undertaken by occupational groups. RESULTS: Two hundred and seventy-seven health professionals completed the survey. The majority were female (n = 213, 77%), worked in public facilities (200, 72%), and treated patients with varied cancer types across all of Australia. Most participants agreed that it was appropriate in their clinical role to discuss financial concerns and 231 (88%) believed that these discussions were an important part of high-quality care. However, 73 (28%) stated that they did not have the appropriate information on support services or resources to facilitate such conversations, differing by occupation group; 7 (11%) social workers, 34 (44%) medical specialists, 18 (25%) nurses, and 14 (27%) of other occupations. Hindrances to discussing financial concerns were insufficient resources or support systems to refer to, followed by lack of time in a typical consultation. CONCLUSION: Health professionals in cancer care commonly address the financial concerns of their patients but attitudes differed across occupations about their role, and frustrations were raised about available solutions. Resources supporting financial-related discussions for all health professionals are urgently needed to advance action in this field.

Assessing health literacy among adult outpatients attending allied health clinics in western sydney: A cross-sectional survey using a multidimensional instrument.

ISSUE ADDRESSED: Low health literacy disproportionately affects adults from culturally and linguistically diverse backgrounds. This study investigated the health literacy of adults attending outpatient allied health services in western Sydney, a highly diverse region in Sydney with residents from a range of cultural and linguistic backgrounds. METHODS: A cross-sectional survey was undertaken between March and April 2017 using the Health Literacy Questionnaire (HLQ). Participants, aged over 18 years and with a primary language of English, Arabic, Chinese or Hindi, were recruited from outpatient allied health clinics at Westmead Hospital. Means (standard deviation) for each of the nine HLQ domains were calculated and associations with demographic variables were investigated using analysis of variance (ANOVA). RESULTS: Two hundred and thirty people were included with mean age of 45.1 years (SD = 19.0), the majority were female (75.5%), over half were born overseas (55.7%) and 77.6% reported speaking English at home. The highest mean score on a HLQ domain (out of 5) was "Understanding health information well enough to know what to do" (M = 4.19; SD = 0.67), and the lowest mean score (out of 4) was "Appraisal of health information" (M = 2.97; SD = 0.54). Participants who did not speak English at home had significantly lower scores on seven of the nine HLQ domains. CONCLUSIONS: Important health literacy strengths and limitations of a diverse sample of adults attending outpatient allied health services in western Sydney were identified. Findings should be considered in the light of the cross-sectional survey methodology with non-random sampling. SO WHAT: Data will inform future interventions to improve health literacy and health outcomes among vulnerable population groups in western Sydney.

Juggling cancer and life in survivorship: The role of general practitioners.

BACKGROUND: The number of cancer survivors in Australia is growing. General practitioners (GPs) have a key role in providing holistic care to people experiencing a cancer diagnosis, receiving treatment or enduring long-term effects of cancer and its treatment. Cancer survivors experience a range of unique biopsychosocial issues, requiring significant and coordinated care to optimise their quality of life. OBJECTIVE: The aim of this article is to provide an overview of management strategies for GPs in addressing three highly distressing cancer-related issues: fear of cancer recurrence, financial toxicity and management of relationships. DISCUSSION: Recommendations are provided for effective screening and monitoring of cancer-related issues, with management strategies outlined to facilitate GP-initiated discussions and referral to credible resources and other health services. Useful materials relevant to the Australian primary care setting are presented together with an overview of information to support GP provision of cancer survivorship care for fear of cancer recurrence, financial toxicity and relationship issues.

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.

Development and evaluation of a health literacy training program for allied health professionals: A pre-post study assessing impact and implementation outcomes.

ISSUE ADDRESSED: We developed and evaluated a health literacy training program for allied health professionals, and explored the feasibility of a train-the-trainer model to support dissemination. METHODS: The program combined didactic and experiential teaching methods and behaviour change techniques, with a focus on teach-back and developing easy-to-understand written materials. Outcomes included participant reactions, confidence (range: 6-30), behavioural intentions (range: 6-42), and dissemination of training content. Implementation outcomes were evaluated using the Normalization MeAsure Development (NoMAD) tool, assessing the constructs of coherence (range: 4-20), cognitive participation (range: 4-20), collective action (range: 7-35) and reflexive monitoring (range: 5-25). RESULTS: Of the 29 allied health professionals who participated, 90% rated the program as 'excellent'/'very good', and 97% said the information was 'extremely'/'very' helpful for their everyday practice. We observed increases in confidence (mean difference [MD] = 6.3, standard deviation [SD] = 2.7, t25  = 11.87, P < .001) and intentions (MD = 3.6, SD = 8.1, t23  = 2.2, P = .04) related to health literacy practices after 6 weeks. Improved confidence was retained over 6 months (MD = 7.1, SD = 5.2, t18  = 5.96, P < .001). After 6 months, 95% of participants (n = 19) reported using teach-back and 50% (n = 10) reported having used a readability formula. Eight-five per cent of participants (17/20) had trained others in health literacy, reaching n = 201 allied health professionals and students. NoMAD scores were highest in relation to cognitive participation (/20) (M = 18.2, SD = 2.1) and lowest in relation to collective action (/35) (M = 25.4, SD = 3.0). CONCLUSIONS: A train-the-trainer model appears to be a feasible method to disseminate health literacy training, but additional work may be needed to improve the collective work done to enable health literacy practices in real-world clinical contexts. SO WHAT: Staff training is particularly important in highly diverse areas where patients are disproportionately affected by low health literacy.

Age-related supportive care needs of women with gynaecological cancer: A qualitative exploration.

Women with gynaecological cancer (GC) experience significant morbidity with associated needs for support, not all of which are currently met by the current system. Types and levels of unmet needs vary across age and the care continuum. This study aimed to identify the shared and unique supportive care needs of younger and older GC patients and survivors to inform improved supportive care. Nineteen younger and ten older women, 3 months to 5 years post a GC diagnosis, were purposively recruited during active treatment, and at early and extended survivorship. Audiotaped and transcribed semi-structured interviews were thematically analysed to establish areas of needs. GC patients reported nine shared needs relating to support, isolation, uncertainty, information, asking questions, escape from illness, advocacy, loss and finding meaning. Younger patients reported unique needs related to the impact of treatment-induced menopause. There is a need for a systematic screening process to identify women who require and want additional help, to ensure appropriate and timely assistance or referrals are provided. Identification of needs will allow health professionals to provide relevant and timely information and support services, resulting in improved quality of life for women affected by GC.

The characteristics of oncology social work in Australia: Implications for workforce planning in integrated cancer care.

AIMS: To describe the demographics, professional characteristics, self-reported professional development needs and research involvement of oncology social workers in Australia and to describe perceived barriers to provision of quality psychosocial care. METHODS: A cross-sectional online survey was administered to social workers working in the oncology field who were contacted through three professional organizations; the Australian Association of Social Workers, Oncology Social Work Australia and the Psycho-oncology Co-operative Research Group, the University of Sydney. A snowball recruitment method was adopted to maximize the sample size. RESULTS: Two thirds of respondents had over 10 years professional practice experience but with lesser experience in oncology settings. Twenty-eight percent had post-graduate qualifications. Professional development needs were reported as moderate or high by 68% of respondents. No association between professional needs and work setting was found. Years of experience in oncology practice and living in an urban area increased the likelihood of involvement in research. Barriers to psychosocial care included poor understandings of the social work role, time constraints and an inadequate number of social work positions. CONCLUSION: In this first Australian study of the social work oncology workforce, the results demonstrated active, well-qualified and experienced social workers providing frontline services to people with cancer and their caregivers in geographically diverse locations across Australia. Inadequate resources and a lack of integrated psychosocial care were identified as barriers to comprehensive cancer care. The need for Aboriginal and Torres Strait Islander social workers was identified as an urgent workforce priority.

Social Work Intervention Research With Adult Cancer Patients: A Literature Review and Reflection on Knowledge-Building for Practice.

The results of a literature review of social work intervention research with adult cancer patients found only a small number of studies conducted by social work researchers. The findings of the review are presented followed by a reflective discussion on the nature of knowledge-building and research knowledge for practice. Knowledge building is considered as a continuous, negotiated process within communities of practice focused on psychosocial perspectives that draw on a range of knowledge sources. Epistemology, worldviews and research orientations are considered along with the values and stance of social work, all of which create the domain of the practice-researcher.

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.

Men's experiences of sexuality after cancer: a material discursive intra-psychic approach.

Men can experience significant changes to their sexuality following the onset of cancer. However, research on men's sexuality post-cancer has focused almost exclusively on those with prostate and testicular cancer, despite evidence that the diagnosis and treatment for most cancers can impact on men's sexuality. This Australian qualitative study explores the experiences of changes to sexuality for 21 men across a range of cancer types and stages, sexual orientations and relationship contexts. Semi-structured interviews were analysed with theoretical thematic analysis guided by a material discursive intra-psychic approach, recognising the materiality of sexual changes, men's intrapsychic experience of such changes within a relational context and the influence of the discursive construction of masculine sexuality. Material changes included erectile difficulty, decreased desire, and difficulty with orgasm. The use of medical aids to minimise the impact of erectile difficulties was shaped by discursive constructions of 'normal' masculine sexuality. The majority of men reported accepting the changes to their sexuality post-cancer and normalised them as part of the natural ageing process. Men's relationship status and context played a key role managing the changes to their sexuality. We conclude by discussing the implications for clinical practice.

Renegotiating sex and intimacy after cancer: resisting the coital imperative.

BACKGROUND: Previous research on sex and intimacy in the context of cancer has focused on documenting sexual changes and difficulties, primarily focusing on heterosexual individuals who have sexual or reproductive cancers. Analyses of sexual renegotiation and the social construction of sex are largely absent from the research agenda. OBJECTIVE: The objective of this study was to explore renegotiation of sex in individuals with cancer, and in partners, across a broad range of cancer types and relational contexts. METHODS: Semistructured interviews were conducted with 44 people with cancer (23 women, 21 men) and 35 partners (18 women, 17 men), 86% of whom identified as heterosexual. The data were analyzed with theoretical thematic analysis, from a material-discursive-intrapsychic perspective. RESULTS: Renegotiation of sex or intimacy was reported by 70% of participants, reflected in 3 themes: "resisting the coital imperative: redefining 'sex,'" "resisting the coital imperative: embracing intimacy," and "adopting the coital imperative: refiguring the body through techno-medicine." The importance of relational context was reflected in the theme "the inter-subjective nature of sexual re-negotiation: relationship context and communication." CONCLUSIONS: Whereas previous research has focused on embodied changes associated with sexuality after cancer, or their psychological consequences, the findings of the present study suggest that hegemonic constructions of "sex," in particular the coital imperative, are central to the experience and negotiation of sex and intimacy after cancer. IMPLICATIONS FOR PRACTICE: Resistance of the coital imperative should be a fundamental aspect of information and support provided by health professionals who seek to reduce distress associated with sexual changes after cancer.

The perils of a vanishing cohort: a study of social comparisons by women with advanced ovarian cancer.

OBJECTIVE: To examine the role social comparisons play in the experience of ovarian cancer patients and to consider the implications this may have for provision of supportive care services for ovarian cancer patients. METHODS: We conducted a longitudinal qualitative study of women with advanced ovarian cancer in Sydney, Australia. Semi-structured interviews were conducted with women with advanced ovarian cancer over a period of 2.5 years. Social comparisons made by 13 study participants in 33 interviews were extracted and analysed using coding categories based on social comparison theory. RESULTS: Participants favoured downward contrasts and lateral comparisons and avoided downward identifications, upward contrasts and upward identifications. Participants expressed a preference for avoiding contact with ovarian cancer patients, for the company of 'normal' others, for normalising information and information that facilitated upward identifications. CONCLUSIONS: We suggest that social comparisons made by women with ovarian cancer are influenced by specific clinical factors associated with their diagnosis-in particular, their status as a member of a 'vanishing cohort'-and argue for further research examining the specific comparison needs and preferences of patients with advanced disease and types of cancer with poor prognoses. PRACTICE IMPLICATIONS: These findings raise questions about uniform approaches to the provision of cancer care and suggest that further research may be required to ensure that interventions are appropriately tailored to the supportive care needs of patients with different types and stages of disease.

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.

Cancergazing? CA125 and post-treatment surveillance in advanced ovarian cancer.

Post-treatment surveillance of advanced ovarian cancer involves regular testing of asymptomatic patients using the CA125 test. This practice is based on a rationale that is not supported by evidence from clinical trials. This paper aims to stimulate critical reflection concerning the effect of investigative tests on clinical decisions and interactions, and the experience of illness, particularly in the context of advanced malignant disease. Drawing on the idea of the "medical gaze", and building on previous health communication research, we present an analysis of in-depth interviews and psychometric tests collected in a prospective study of 20 Australian women with advanced ovarian cancer conducted between 2006 and 2009. We describe the demands placed on patients by the use of the CA125 test, some hazards it creates for decision-making, and some of the test's subjective benefits. It is widely believed that the CA125 test generates anxiety among patients, and the proposed solution is to educate women more about the test. We found no evidence that anxiety was a problem requiring a response over and above existing services. We conclude that the current debate is simplistic and limited. Focussing on patient anxiety does not account for other important effects of post-treatment surveillance, and educating patients about the test is unlikely to mitigate anxiety because testing is part of a wider process by which patients become aware of a disease that--once it has relapsed--will certainly kill them in the near future.

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.

After cancer: the unmet supportive care needs of survivors and their partners.

Cancer patients and their partners experience elevated distress and unmet supportive care needs at the time of treatment, however, their ongoing needs have not been adequately described. This qualitative study explores the needs of disease-free cancer survivors and their partners using semi-structured telephone interviews. A convenience sample of 25 key informants' identified needs in the domains of information, health care, physical functioning, relationships, emotions, socio-economic issues, expectations and life perspective; and the positive outcomes are widely reported. The identification of unique needs of survivors and partners supports the development of supportive care measures to specifically assess ongoing care need in these populations.

What is the ideal support group? Views of Australian people with cancer and their carers.

AIMS: To explore views on the ideal structure and process of support groups for cancer patients. PATIENTS AND METHODS: From 184 cancer support groups identified in NSW, Australia, 50 were randomly selected within strata of five variations in group structure: homogenous versus heterogenous participants; urban versus rural; community versus hospital setting, leader with cancer experience or not; and with professional training or not. Four hundred and seventy-six group members completed a questionnaire. RESULTS: Participants valued being with others like them, gaining information about cancer and having an effective leader. Groups were seen to be currently failing people from culturally and linguistically diverse backgrounds, and links with oncology health professionals were inadequate. Few clear preferences for structure were expressed, except for the non-exclusion of those with a poor prognosis. Patients tended to prefer the structure of their own group, but patients longer since diagnosis, those with better informal support and carers preferred to meet in the community setting, while men with prostate cancer preferred a medical setting. CONCLUSIONS: Some suggestions for group structure and process can be made on the basis of these findings; however, individual variation suggests that a needs analysis should be made by individual groups.