Facilitating online support groups for cancer patients: the learning experience of psycho‐oncology clinicians

Stephen, Joanne; Christie, Glenda; Flood, Karen; Golant, Mitch; Rahn, Michelle; Rennie, Heather; Speca, Michael; Taylor‐Brown, Jill; Turner, Jill

doi:10.1002/pon.1791

Cited by 22 publications

(30 citation statements)

References 19 publications

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“…Whilst peer support is used in those with cancer, there appear to be no studies of peer mentoring specifically for those with advanced cancer[62–64]. Most peer support is offered in groups[62, 63], with a developing focus on internet facilitation[65–68], there is no research evidence for individual peer support for those with advanced cancer, as proposed by participants in this research.…”

Section: Discussionmentioning

confidence: 99%

Coping Well with Advanced Cancer: A Serial Qualitative Interview Study with Patients and Family Carers

et al. 2017

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ObjectivesTo understand successful strategies used by people to cope well when living with advanced cancer; to explore how professionals can support effective coping strategies; to understand how to support development of effective coping strategies for patients and family carers.DesignQualitative serial (4–12 week intervals) interview study with people with advanced cancer and their informal carers followed by focus groups. The iterative design had a novel focus on positive coping strategies. Interview analysis focused on patients and carers as individuals and pairs, exploring multiple dimensions of their coping experiences. Focus group analysis explored strategies for intervention development.Participants26 people with advanced (stage 3–4) breast, prostate, lung or colorectal cancer, or in receipt of palliative care, and 24 paired nominated informal/family carers.SettingParticipants recruited through outpatient clinics at two tertiary cancer centres in Merseyside and Manchester, UK, between June 2012 and July 2013.Results45 patient and 41 carer interviews were conducted plus 4 focus groups (16 participants). People with advanced cancer and their informal/family carers develop coping strategies which enable effective management of psychological wellbeing. People draw from pre-diagnosis coping strategies, but these develop through responding to the experience of living with advanced cancer. Strategies include being realistic, indulgence, support, and learning from others, which enabled participants to regain a sense of wellbeing after emotional challenge. Learning from peers emerged as particularly important in promoting psychological wellbeing through the development of effective ‘everyday’, non-clinical coping strategies.ConclusionsOur findings challenge current models of providing psychological support for those with advanced cancer which focus on professional intervention. It is important to recognise, enable and support peoples’ own resources and coping strategies. Peer support may have potential, and could be a patient-centred, cost effective way of managing the needs of a growing population of those living with advanced cancer.

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Section: Discussionmentioning

confidence: 99%

Coping Well with Advanced Cancer: A Serial Qualitative Interview Study with Patients and Family Carers

et al. 2017

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“…41 The choice of an in-person counseling format may also have discouraged some women who expressed reluctance to come to the cancer center for extra appointments, probably accounting for the greater drop-out rate in the counseled group after women found out their assigned treatment arm. Counseling may be more appealing if delivered by phone, 42 email, 25 or in bulletin board 27,28 or realtime 43 internet groups.…”

Section: Discussionmentioning

confidence: 99%

Efficacy Trial of An Internet-Based Intervention for Cancer-Related Female Sexual Dysfunction

Schover¹,

Yuan²,

Fellman³

et al. 2013

J Natl Compr Canc Netw

121

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The recent National Comprehensive Cancer Network Survivorship Guideline recommends systematic evaluation and multidisciplinary treatment of cancer-related sexual dysfunctions. Yet, most oncology professionals fail to routinely assess sexual problems and lack expertise to treat them. An internet-based intervention was designed to educate female patients and their partners about cancer-related sexual problems, to describe medical treatment options and how to find expert care, and to provide self-help strategies. A randomized trial assessed efficacy of the intervention when used as self-help versus the same web access plus three supplemental counseling sessions. Survivors of localized breast or gynecological cancer completed online questionnaires at baseline, post-treatment, and 3- and 6-month follow-up, including the Female Sexual Function Index (FSFI); the Menopausal Sexual Interest Questionnaire (MSIQ), the Brief Symptom Inventory-18 (BSI-18) to assess emotional distress, and the Quality of Life in Adult Cancer Survivors Scale (QLACS). Program evaluation ratings were completed post-treatment. Fifty-eight women completed baseline questionnaires (mean age 53 ± 9). Drop-out rates were 22% during treatment and 34% at 6-month follow-up. Linear mixed models for each outcome across time showed improvement in total scores on the FSFI, MSIQ, and QLACS (P<0.001) and BSI-18 (P=0.001). The counseled group improved significantly more on sexuality measures, but changes in emotional distress and quality of life did not differ between groups. Program content and ease of use were rated positively. Research is needed on how best to integrate this intervention into routine clinical practice, particularly how to improve uptake and adherence.

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“…Although these groups did not suit all users or meet all psychosocial needs, most participants appeared to gain some or many of the well-documented benefits of participation in support groups for medical patients 8,36 . That finding challenges a belief held by many health care professionals that Internet-based social relationships are inherently superficial, tenuous, and lacking commitment 31,37 . Participation rates in online groups vary and can be low, but participation rates in our osgs were comparable or better than have been reported for other online group interventions 26,38,39 and for other face-to-face group interventions 13 .…”

Section: Discussionmentioning

confidence: 72%

“…All hold masters or doctorate qualifications in the fields of social work, psychology, clinical counselling, or nursing. Facilitators take part in a minimum of 10 weeks of training to learn facilitation techniques for text-only groups, as first developed by the Cancer Support Community in the United States 31,32 . They also adapt cognitive behavioral and supportive expressive approaches for the online chat groups they lead.…”

Section: Facilitator Training and Supervisionmentioning

confidence: 99%

Evaluation of CancerChatCanada: A Program of Online Support for Canadians Affected by Cancer

et al. 2013

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Background: Professional-led cancer support groups can improve quality of life and address unmet needs, but most Canadians affected by cancer do not have access to or do not make use of cancer support groups. A collaborative interdisciplinary team developed, operated, and evaluated Internet-based, professional-led, live-chat support groups (osgs) for cancer patients, caregivers, and survivors across Canada. Objective: Our study aimed to report participant and participation characteristics in the pan-Canadian initiative known as CancerChatCanada, and to understand participant perspectives about the quality of communication and professional facilitation, overall satisfaction, and psychosocial benefits and outcomes. Methods: Participants in osgs provided informed consent. Participant and participation characteristics were gathered from program data collection tools and are described using frequencies, means, and chi-squares. Patient, survivor, and caregiver perspectives were derived from 102 telephone interviews conducted after osg completion and subjected to a directed qualitative content analysis. Results: The 55 professional-led osgs enrolled 351 participants from 9 provinces. More than half the participants came from rural or semirural areas, and more than 84% had no received previous cancer support. The attendance rate was 75%, the dropout rate was 26%, and 80% of participants were satisfied or very satisfied. The convenience and privacy of osgs were benefits. Meaningful communication about important and difficult topics, kinship and bonding with others, and improved mood and self-care were perceived outcomes. Conclusions: Our results demonstrate that this collaborative initiative was successful in increasing reach and access, and that pan-Canadian, professional-led osgs provide psychosocial benefit to underserved and burdened cancer patients, survivors, and family caregivers.

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Facilitating online support groups for cancer patients: the learning experience of psycho‐oncology clinicians

Cited by 22 publications

References 19 publications

Coping Well with Advanced Cancer: A Serial Qualitative Interview Study with Patients and Family Carers

Coping Well with Advanced Cancer: A Serial Qualitative Interview Study with Patients and Family Carers

Efficacy Trial of An Internet-Based Intervention for Cancer-Related Female Sexual Dysfunction

Evaluation of CancerChatCanada: A Program of Online Support for Canadians Affected by Cancer

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