Establishing best practices in cancer online support groups: protocol for a realist review

Bender, Jacqueline L.; Babinski, Stephanie; Wong, Geoff; Tricco, Andrea C; Englesakis, Marina; Cyr, Alaina; Potts, Henry W W; Perski, Olga; Esplen, Mary Jane; Young, Colleen; Wassersug, Richard J.; Forster, Victoria J.; Papadakos, Janet; Soobiah, Charlene; Fox, Colleen; Gothard-Huang, Alison; Witteman, Holly O.

doi:10.1136/bmjopen-2021-053916

Cited by 15 publications

(10 citation statements)

References 52 publications

(80 reference statements)

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“…Cancer support groups have been shown to result in a higher quality of life in cancer survivors [ 40 ], reducing the psychological symptoms of cancer survivorship and aiding in cancer-related self-management [ 41 ]. This was echoed by the findings of this study, with those that attended support groups finding them extremely useful.…”

Section: Discussionmentioning

confidence: 99%

Cancer survivorship in urban people living with cancer following primary treatment: A secondary analysis of qualitative interview data

Mahmood,

Graham,

Cooke

et al. 2024

Support Care Cancer

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Purpose Urban cancer survivors have been shown to have better opportunities for recovery of health and wellbeing than their rural counterparts. Whilst there is a considerable body of evidence that explores urban people with cancers’ experiences and outcomes, there is a dearth of research that explicitly explores ‘urban cancer survivorship’ in its own right. This study aimed to explore cancer survivorship in urban people living with cancer who have completed primary treatment. Methods Secondary analysis of in-depth interview data (n = 18) with adults living with cancer who resided in urban parts of the UK. Data were drawn from a broader study on self-management of people living with cancer. An adapted version of Foster and Fenlon’s recovery of health and wellbeing in cancer survivorship framework was used to inform the analysis of the data. Results Recovery of health and wellbeing was impacted by a variety of contributory factors, which had a largely positive impact. Access to amenities, social support, travel, and healthcare factors were opportunities for urban cancer survivors, whilst pollution, traffic and a lack of green spaces acted as challenges for health management. Conclusion This study demonstrated how urban residency acted as both a barrier and a facilitator to recovery of health and wellbeing in urban cancer survivors following the completion of primary treatment. Area of residence should be taken into account by health providers and policymakers supporting cancer survivorship and the views of those with lived experiences should be included in informing future practice.

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Section: Discussionmentioning

confidence: 99%

Cancer survivorship in urban people living with cancer following primary treatment: A secondary analysis of qualitative interview data

Mahmood,

Graham,

Cooke

et al. 2024

Support Care Cancer

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Section: Introductionmentioning

confidence: 99%

“…Online cancer support group (OCSG) participants are composed of heterogeneous members who are generally younger and have higher levels of education compared to face-toface support groups [14][15][16]. Moreover, OCSGs provide several advantages to promote communication between cancer patients, as its members share different communication subjects and goals [16]. This is particularly true in South Korea, where there is increased diversity in OCSG member composition with Internet penetration in over 95% [17], which can swiftly disseminate the anti-cancer anthelmintic issue through Internet-based media.…”

Section: Introductionmentioning

confidence: 99%

Status of Using Complementary and Alternative Medicine among Patients with Cancer in Korea: an Online Survey of Online Cancer Support Groups (KCSG PC21-20)

Kim¹,

Kwon²,

Rha³

et al. 2023

Cancer Res Treat

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An increasing number of patients with cancers are interested in complementary and alternative medicine (CAM), which lacks scientific evidence. This study aimed to determine how CAM was used and how media affected patients in online cancer support groups (OCSG). Materials and MethodsBetween August 18 and September 12, 2021, an online survey was conducted among the members of OCSG. The survey consisted of five parts: baseline characteristics, attitudes toward and experience with CAM, source of information and reliabilities, experience with anthelmintics, and online health information literacy and usage. ResultsAmong the 644 responders, a total of 221 patients with cancer completed the survey, and 78.2% (173/221) used CAM. The users' median age was 52 years; 46.8% were males, and 43.9% had metastatic disease. Fifty-three CAM users (30.6%) discussed their physicians about CAM.

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“…Research has shown that cancer peer support for adult patients is an effective complement to professional health care, foremost by providing psychosocial relief and addressing unmet support needs of cancer patients, specifically those related to their daily life 14–17 . It fosters the empowerment of cancer patients to cope better with their disease and to find ways and solutions for adequate self‐management 18,19 .…”

Section: Introductionmentioning

confidence: 99%

“…13 Research has shown that cancer peer support for adult patients is an effective complement to professional health care, foremost by providing psychosocial relief and addressing unmet support needs of cancer patients, specifically those related to their daily life. [14][15][16][17] It fosters the empowerment of cancer patients to cope better with their disease and to find ways and solutions for adequate selfmanagement. 18,19 The main resource of nonprofessional psychosocial support are cancer self-help groups (SHGs) which are peer support groups of individuals with the same disease who meet outside professional settings in nonhierarchical relationships on a voluntary basis.…”

mentioning

confidence: 99%

Self‐help friendliness in cancer care: A cross‐sectional study among self‐help group leaders in Germany

Ziegler

Nickel

Trojan

et al. 2022

Health Expectations

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Background Peer support is increasingly recognized as crucial for improving health and psychosocial outcomes in oncological care. The integration of cancer self‐help groups (SHGs) into cancer care facilities has gained importance in recent years. Yet, there is a lack of knowledge of the extent and quality of cooperation between cancer care facilities and SHGs and their integration into routine care. The concept of self‐help friendliness (SHF) provides a feasible instrument for the measurement of cooperation and integration. Methods A cross‐sectional study across Germany investigates the experiences of 266 leaders of cancer SHGs concerning their cooperation with cancer care facilities based on the criteria for SHF. The participatory study was developed and conducted with representatives of the House of Cancer Self‐Help and the federal associations of cancer self‐help. Results According to the SHG leaders, about 80% of their members primarily find their way to an SHG via other patients and only less than 50% more or less frequently via hospitals or rehabilitation clinics. The quality of cooperation with cancer centres, hospitals and rehabilitation clinics, however, is rated as good to very good by more than 70% of the respondents. Nine out of 10 quality criteria for SHF are fully or at least partially implemented, the values vary between 53% and 87%. Overall, 58% of the SHG leaders feel well to be very well integrated into care facilities. Conclusions The results show a positive assessment of the involvement of SHGs in oncological care, but differences between inpatient and outpatient care and low referrals to SHGs are prominent. The concept of SHF is a feasible solution for a systematic and measurable involvement of SHGs. Patient or Public Contribution The perspectives and insight of patient representatives obtained through qualitative interviews were directly incorporated into this study. Representatives of cancer self‐help organizations were involved in the development of the questionnaire, reviewed it for content and comprehensibility, and further helped to recruit participants.

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Establishing best practices in cancer online support groups: protocol for a realist review

Cited by 15 publications

References 52 publications

Cancer survivorship in urban people living with cancer following primary treatment: A secondary analysis of qualitative interview data

Cancer survivorship in urban people living with cancer following primary treatment: A secondary analysis of qualitative interview data

Status of Using Complementary and Alternative Medicine among Patients with Cancer in Korea: an Online Survey of Online Cancer Support Groups (KCSG PC21-20)

Self‐help friendliness in cancer care: A cross‐sectional study among self‐help group leaders in Germany

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