1. Medical Psychology Research Unit, School of Psychology, University of Sydney
2. School of Psychology, University of Western Sydney
3. Department of Gynaecological Oncology, Westmead Hospital
OBJECTIVE: To explore the nature and structure of cancer support groups in the state of NSW Australia. METHOD: Support groups were identified through The Cancer Council NSW and a cancer consumer advocacy group. Participants (n = 179) were cancer support group coordinators who completed a cross-sectional audit assessing the group setting, facilitation, structure and difficulties experienced by groups. RESULTS: In NSW there has been a marked increase in the number of available cancer support groups. The main variations between groups related to their location, specificity, setting, leadership and structure. The most frequently identified objectives of groups were to provide psychological support and information. The main difficulty being faced by groups was poor attendance and referral. CONCLUSIONS: There is great diversity in the nature and structure of cancer support groups in NSW. There is an increased availability of cancer support groups in NSW. Mutual understanding between group coordinators and health professionals may help improve the usage and viability of cancer support groups.
Social support has been found to have a pivotal role in the adjustment and psychosocial well-being of people with cancer,1,2 yet cancer patients report high levels of unmet need in the area of support.3 Social support may be formal (such as that provided by health care professionals) or informal (as provided by family and friends). Comprehensive psychosocial support services are not currently part of routine patient care in most Australian cancer treatment centres. One response to the gaps in support services in mainstream health care has been the formation of cancer support groups existing either in association with or independent of the healthcare system.
While there is limited empirical research evaluating the nature and efficacy of cancer support groups,4 the research that does exist suggests that there may be benefits in attending a cancer support group.5 Clinicians however, report limited knowledge of available cancer support groups6 and their nature and structure. A Canadian study of a support group for women with early stage breast cancer found that 41% of participants found out about the group themselves, 40% found out about the group from nursing staff and only 10% found out about the group from their oncologist.7 This study set out to examine the nature and structure of cancer support groups, focusing on a specific geographical area, NSW Australia.
This study examined, through telephone interviews or self-report surveys, the nature and availability of support groups for adults with cancer in NSW. A state-wide, cross-sectional audit of existing groups assessed the organisational structure, practical features and modalities, aims and degree of integration with the health system or with voluntary organisations.
Group coordinators or a nominated contact person for all cancer support groups in NSW were identified both through listings in The Cancer Council NSW (TCCN) Services Directory (2001), as well as through a ‘snowballing’ technique. The list was further expanded after consultation with Cancer Voices, the peak cancer consumer advocacy group in NSW. The audit commenced in May 2002. By April 2003, 264 cancer support groups had been identified.
For the purpose of this study, the support groups included were those that: identified themselves as providing mutual support; were open to adults who had been diagnosed with cancer and/or for adult carers of adults who had been diagnosed with cancer; were located in NSW; and held face-to-face meetings. Groups that operated through individual phone or email contact, or operated through a web-based site only, were excluded.
Ethical approval for all aspects of the study was obtained from the University of Western Sydney and the University of Sydney Human Research Ethics Committees. Participant group coordinators were contacted by telephone. The aims of the project were outlined, verbal consent sought and either a telephone interview arranged or a self-report survey mailed, equivalent to the interview. One hundred and twenty-six coordinators were telephone interviewed and 53 were sent the self-report survey.
The telephone interview and self-report survey included open-ended and closed questions assessing various aspects of group functioning, including contact details, group setting, group aims, history and structure. Participants were also asked about any difficulties their group had experienced.
Of the 264 cancer support groups identified, 173 active and 11 non-active support groups participated in the audit. Of the 80 groups who did not participate, 20 groups did not meet the inclusion criteria and 21 were duplicate listings. Twenty-three of the groups listed had ceased to operate. The results presented in this article relate to the 184 participating cancer support groups.
The earliest recorded group started in 1978. Groups ranged in age from one month to 25 years (mean = 6.4 years, SD = 4.9) (see Table 1). Over one third of the groups (n=65) had commenced since 2000. Support groups had been established by a range of people including health professionals (nurses, social workers, psychologists and doctors), religious officials, speech pathologists and employees of TCCN. Of note, people with cancer founded at least a quarter of the groups surveyed (>70 groups).
Sixty-one cancer support groups were located within the Sydney metropolitan area (33%) (see Table 2). There was a roughly even split between general and specific (restricted to a particular cancer type or site) groups. Of the general cancer support groups, one restricted membership to male participants and two restricted membership to women. Four cultural and language-specific groups, all located in Sydney, were identified (Indigenous, Chinese, Spanish and Greek). There were three groups specifically for people with recurrent cancer or receiving palliative care, one for carers, one for people newly diagnosed with cancer and a group for people experiencing lymphoedema (not limited to participants with a breast cancer diagnosis). Five of the breast cancer groups were for young women only. Some groups included people with diagnoses other than cancer eg. the asbestos-related diseases group.
Cancer support group meetings were most frequently located in a health care setting (n = 110; 60%) (see Table 1). Other venues (n = 30; 17%) for meetings included business premises, local clubs or restaurants/cafes. Some groups varied the location of their meetings, thus identifying more than one venue.
Groups were facilitated by health professionals, people affected by cancer (which included a person with cancer, a carer or a volunteer with cancer experience), or a combination of these. A small number of groups were facilitated by a qualified health professional who also had a cancer diagnosis. Over half of the support groups (61%) were facilitated by either one or two health professionals, typically social workers, nurses or psychologists. Half (50%) of all group coordinators were conducting the group as part of their paid health professional role, while the other half were leading the group voluntarily. There were at least 39 groups with a person with cancer in a leadership role within the group.
The costs associated with running the group were subsidised by a charity organisation (n=23; 13%), group members’ contribution (n=39; 24%) or an external funding source (n=28; 17%) (see Table 1). Group members’ contributions varied from a “gold coin” donation to an annual subscription to the group. These funds were often used to offset the cost of beverages, room rental or insurance costs. External funding sources identified included the local community, hospital departments, government/cancer organisations, or businesses. Administrative assistance was received by 53% of groups from external sources including the hospital or community health centre to which the group was attached, cancer organisations such as TCCN, private businesses or other community organisations.
Support group coordinators were asked to identify the main aim or aims of their group. Most group leaders reported that the primary aims of the group were psychological and emotional support (n = 179; 98%) and information and education (n = 168; 92%). Smaller numbers identified social contact (n = 136; 74%), practical assistance (n = 112; 62%), spiritual assistance (n = 89; 49%), physical needs (n = 84; 47%), advocacy (n = 65; 37%) and other aims (such as fundraising) as aims of the group.
Support group meeting times varied from 45 minutes to two hours. Nearly two thirds of groups met monthly (n = 116; 64%) (see Table 1). Of the 31 groups that held weekly meetings, 17 ran set programs that were conducted over a fixed number of weeks.
Over three-quarters (n = 142; 79%) of the support groups regularly invited guest speakers to present topics of interest at their meetings. Guest speakers included doctors, nurses, psychologists, dieticians, naturopaths and pharmacists. Mutual support and sharing occurred in most support groups (n = 175; 98%).
Participants reported the most effective recruitment strategy was through “word of mouth”. Many group coordinators (n = 131; 82%) advertised their group through media including local newspapers, radio or television, or through pamphlets/public notices placed in various health care settings and/or the wider community. The majority of support groups (n = 140; 90%) reported that they maintained a mailing list of their group members.
Most support groups (n=170; 93%) were open for new participants to join at any time (see Table 1). There was a large variation in the reported attendance at support group meetings, ranging from one to 200 with an average of 13 participants at group meetings.
Attendance of carers or family members at meetings was permitted by 155 groups (n=155; 85%), with three such people attending on average (range 0-18). Some breast or gynaecological cancer groups restricted participation to female carers or family members only.
One hundred and eight group coordinators (61%) reported that their support group was currently experiencing some difficulties, including poor attendance/referral, unsuitable venue, lack of administrative and leadership resources and limited accessibility to guest speakers.
Among the 11 groups that were inactive, the most frequently identified difficulties were poor attendance because of illness/death, difficulties recruiting new members, support and information needs of participants having been satisfied by the group (leaving no reason for its continued existence), lack of support from the community and practical issues such as transport difficulties and work commitments. Some group coordinators reported planning to recommence group meetings employing a different format.
This study examined the nature and structure of cancer support groups in NSW. The study identified a large number of active cancer support groups in NSW with marked proliferation of these groups in the last decade. This finding may reflect an increasing role for groups in meeting the supportive care needs of cancer patients. Many of the groups identified had been functioning over many years, however the fluid nature of support group formation, evolution and cessation was very evident in this study.
Groups varied in their location, specificity, setting, leadership and structure. There was a wide variation in attendance with, on average, 13 attendees at group meetings. The frequency of meetings also differed, with many groups (63%) providing monthly meetings while nearly 20% held weekly meetings. Despite this diversity, groups appeared to be similar in their aims and function. Psychological support and information/education were found to be universally important.
Referral to support groups by health professionals was however, relatively uncommon. Word of mouth was the most frequent method of recruiting new members, with leaders frequently identifying that poor attendance and referral was one of the main difficulties being faced by the group. Groups typically operated with little direct financial support and variable formal input from health services and cancer organisations. This was reported to contribute to difficulties in maintaining a viable group. Mechanisms to rectify this situation need to be identified. It is possible that health professionals and support group leaders would benefit from developing a better level of mutual understanding, such that health professionals increase their awareness of the structure and content of the support groups that are available for their patients, while group leaders can be confident of ongoing professional support and assistance, thus overcoming some of the key difficulties faced by cancer support groups.
This research aimed to examine the nature and structure of cancer support groups specifically in NSW, Australia. This information was provided by leaders of cancer support groups and was cross-sectional. The generalisability of these findings to other regions is unknown. Despite these limitations this research has added to the small amount of literature available on the nature and structure of cancer support groups, specifically, those groups not engaged in formal psychotherapeutic intervention. Groups offer support to a large number of people at the one time and thus are a cost and time effective method of delivering social support. The small body of evidence that does exist on cancer support groups suggests that they may be beneficial to attendees. Little is known however about the effectiveness of cancer support groups not engaged in formal psychotherapeutic interventions. It would be of interest therefore to consider the effect of differing group structures on psychological well-being.
Funding for this project was provided by The Cancer Council NSW and by the National Health and Medical Research Council’s Biomedical Postgraduate Research Scholarship (Dr Laura Kirsten).