Who helps the leaders? Difficulties experienced by cancer support group leaders

Kirsten, Laura; Butow, Phyllis; Price, Melanie A.; Hobbs, Kim; Sunquist, Kendra

doi:10.1007/s00520-005-0896-2

Cited by 21 publications

(26 citation statements)

References 14 publications

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“…Although group members were adamant that PCSGs needed to be survivor led and our observations suggested that leaders derived much satisfaction from their hard work, being a group leader required significant time, energy, and commitment that few men were able or willing to take on. Similar to problems described by both professional and nonprofessional leaders of cancer support groups (Kirsten, Butow, Price, Hobbs, & Sunquist, 2006), PCSG dependence on one or two leaders and lack of defined terms and tenure meant that leaders were at risk for "burnout." In these situations, the long-term viability of the PCSG was often at risk.…”

Section: Discussionmentioning

confidence: 97%

How Prostate Cancer Support Groups Do and Do Not Survive: British Columbian Perspectives

et al. 2007

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). Research to date has demonstrated that men have prostate-specific and general health needs across the entire illness trajectory, and a growing body of empirical evidence indicates that psychosocial support and health and illness information are integral to the well-being of men who have prostate cancer. Increasingly, community-based support services such as prostate cancer support groups (PCSGs) have emerged as resources for men and their families to deal with the challenges of living with prostate cancer.PCSGs are relatively recent phenomena in several countries and are more common in North America than the rest of the world (Coreil & Behal, 1999;Visser, Riemens, Van der Jagt, Vingerhoets, & Voerman, 2001). Canadian-based PCSGs began in the early 1990s in urban centers, and two British Columbian (BC; Vancouver and Victoria) groups were among the first to operate. Since that time, the number of PCSGs has grown to 31 in BC and 118 P rostate cancer is the most common malignancy among men in Western society (Schiff & Mulhall, 2005) and results in diverse psychosocial and health issues for survivors and their families. There is evidence about the associated challenges and effects of prostate cancer and its treatments on quality of life (Kirschner-Hermanns & Jakse, 2002;Palmer, Fogarty, Somerfield, & Powel, 2003) Many prostate cancer support groups (PCSGs) have formed in North America during the past decade, yet their operation or factors influencing sustainability are poorly understood. This article reports micro (intragroup), meso (intergroup), and macro (group/structure) analyses drawn from the fieldwork and participant observations conducted for an ethnographic study of PCSGs based in British Columbia, Canada. The findings indicate that effective group leadership is integral to group sustainability and the recruitment and retention of attendees. At the meso level, intergroup connections and communication were often informal; however, the primary purpose of all the PCSGs was to provide information and support to men and their families. Many PCSGs were uncertain how formal associations with cancer fund-raising societies would influence group effectiveness. Macro issues such as prostate cancer activism resided with individual group "champions" through activities coordinated by provincial and national PCSG organizations. However, activism did not guarantee group sustainability. The study findings reveal why some groups flourish while others appear untenable, and form the basis for discussion about how PCSG sustainability might be best achieved.

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Section: Discussionmentioning

confidence: 97%

How Prostate Cancer Support Groups Do and Do Not Survive: British Columbian Perspectives

et al. 2007

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“…As such, it should be incorporated into undergraduate and postgraduate medical education. There are also important implications for continuing professional development and staff peer support [115]. Reluctance to disclose uncomfortable information should be informally discussed with colleagues and more formally raised during supervision.…”

Section: Discussionmentioning

confidence: 99%

Reluctance to disclose difficult diagnoses: a narrative review comparing communication by psychiatrists and oncologists

Mitchell

2007

Support Care Cancer

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Psychiatrists and general practitioners may be equally reluctant to reveal difficult diagnoses and prognoses of conditions such as schizophrenia and dementia. The reluctance to reveal a difficult diagnosis may be a routine, but little acknowledged the aspect of medical care that should be incorporated into undergraduate and postgraduate education and openly discussed during peer group supervision.

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“…The DVD and accompanying manual were developed to demonstrate how support group leaders can address a variety of support group scenarios previously reported as challenging [14]. These include: (1) interviewing potential members, (2) how to welcome a new group member, managing (3) dominating, (4) angry, and (5) silent group members, (6) facilitating the first meeting after the death of a group member, and (7) dealing with a controversial group discussion.…”

Section: Development Of the Information And Training Interventionsmentioning

confidence: 99%

“…Theoretical and practical information on support group facilitation were included on the Website (see Table 1). Topics covered addressed challenges previously reported in the cancer support group leader literature [10,13,14]. Information provided was developed after a systematic search of the literature on group facilitation and included material from a variety of sources [19][20][21][22][23][24][25][26][27][28].…”

Section: Development Of the Information And Training Interventionsmentioning

confidence: 99%

“…The group leader plays a key role in the success of a support group [3,9,10] and the experience of group members, both positive and negative [11]. Support group leaders have commonly reported challenges associated with group dynamics (e.g., difficult personalities) and practical issues (e.g., poor recognition of the group by health professionals and difficulties recruiting and retaining members) [10,[12][13][14]. The limited literature on cancer support group leaders supports the provision of ongoing education and training for both professional and volunteer leaders [13,15,16], with evidence suggesting that more skilled and experienced leaders create better outcomes for group members [3].…”

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confidence: 99%

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

Zordan

Butow

Kirsten

et al. 2011

Support Care Cancer

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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.

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Who helps the leaders? Difficulties experienced by cancer support group leaders

Cited by 21 publications

References 14 publications

How Prostate Cancer Support Groups Do and Do Not Survive: British Columbian Perspectives

How Prostate Cancer Support Groups Do and Do Not Survive: British Columbian Perspectives

Reluctance to disclose difficult diagnoses: a narrative review comparing communication by psychiatrists and oncologists

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

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