Mirroring, monitoring, modelling, belonging, and distancing: Psychosocial processes in an online support group of breast cancer patients

Montali, Lorenzo; Zulato, Edoardo; Frigerio, Alessandra; Frangi, Elisa; Camussi, E

doi:10.1002/jcop.22696

Cited by 18 publications

(7 citation statements)

References 47 publications

(69 reference statements)

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“…Difficulty accessing the COP platform via usual workstations [ 39 ] or operating systems [ 42 ] was listed as a barrier in two of the studies. A lack of understanding of the concept of the COP was reported as a barrier in one study [ 10 ]; two studies cited fear of judgement as barriers to engagement [ 11 , 53 ]. One study noted that those who were encouraged to join the COP by peers had lower engagement than those who self-selected [ 29 ], whilst another found that lack of participation by peripheral members caused frustration among core members [ 21 ].…”

Section: Resultsmentioning

confidence: 99%

The aims and effectiveness of communities of practice in healthcare: A systematic review

Noar,

Jeffery,

Subbiah Ponniah

et al. 2023

PLoS ONE

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Communities of practice (CoPs) are defined as "groups of people who share a concern, a set of problems, or a passion about a topic, and who deepen their knowledge and expertise by interacting on an ongoing basis". They are an effective form of knowledge management that have been successfully used in the business sector and increasingly so in healthcare. In May 2023 the electronic databases MEDLINE and EMBASE were systematically searched for primary research studies on CoPs published between 1st January 1950 and 31st December 2022. PRISMA guidelines were followed. The following search terms were used: community/communities of practice AND (healthcare OR medicine OR patient/s). The database search picked up 2009 studies for screening. Of these, 50 papers met the inclusion criteria. The most common aim of CoPs was to directly improve a clinical outcome, with 19 studies aiming to achieve this. In terms of outcomes, qualitative outcomes were the most common measure used in 21 studies. Only 11 of the studies with a quantitative element had the appropriate statistical methodology to report significance. Of the 9 studies that showed a statistically significant effect, 5 showed improvements in hospital-based provision of services such as discharge planning or rehabilitation services. 2 of the studies showed improvements in primary-care, such as management of hepatitis C, and 2 studies showed improvements in direct clinical outcomes, such as central line infections. CoPs in healthcare are aimed at improving clinical outcomes and have been shown to be effective. There is still progress to be made and a need for further studies with more rigorous methodologies, such as RCTs, to provide further support of the causality of CoPs on outcomes.

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Section: Resultsmentioning

confidence: 99%

The aims and effectiveness of communities of practice in healthcare: A systematic review

Noar,

Jeffery,

Subbiah Ponniah

et al. 2023

PLoS ONE

View full text Add to dashboard Cite

show abstract

“…Some participants in previous studies have also stated that having T1DM made them grow and mature faster (Saylor et al, 2019) and even gave them more life skills, such as maths and empathy (Abdoli et al, 2017;Saylor et al, 2019). The importance of positive growth is not limited to the patient with diabetes, as shown by studies on patients who have faced a life-threatening illness such as cancer, both at a young age and as adults (Kim, 2017;Montali et al, 2021).…”

Section: Discussionmentioning

confidence: 99%

Barriers and facilitators of type 1 diabetes self-care in adolescents and young adults

Montali

Zulato

Cornara

et al. 2022

Journal of Pediatric Nursing

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“…Hopefully things will continue for now. [Nancy; lockdown 1] As before the pandemic, forum users frequently referred each other for information to their NHS breast care team members, especially the nurses [49]. The resulting experiences were mixed, suggesting that COVID-19 changes may have rendered acquiring information from these sources difficult for some people:…”

Section: When You're Self-isolating It's Hard To Know What's Best To ...mentioning

confidence: 99%

“…Lung and breast cancer were frequently discussed on Twitter and OHFs by people living with cancer during COVID-19 lockdowns, with concerns regarding “delayed diagnosis, cancellations, missed treatments, and weakened immunity” [ 48 ]. Forum users were worried about the impact of COVID-19 on treatment, health, everyday life, and finances—they expressed a strong need for information and advice on COVID-19 and self-management [ 49 ]. The emotional health of patients with breast cancer was affected by COVID-19, and they desired one-to-one therapies, advice, and emotional support [ 50 ].…”

Section: Introductionmentioning

confidence: 99%

Use of Online Health Forums by People Living With Breast Cancer During the COVID-19 Pandemic: Thematic Analysis

et al. 2023

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Background At the time of the UK COVID-19 lockdowns, online health forums (OHFs) were one of the relatively few remaining accessible sources of peer support for people living with breast cancer. Cancer services were heavily affected by the pandemic in many ways, including the closure of many of the customary support services. Previous studies indicate that loneliness, anxiety, distress, and depression caused by COVID-19 were common among people living with breast cancer, and this suggests that the role of OHFs in providing users with support, information, and empathy could have been of increased importance at that time. Objective This study aimed to examine how people living with breast cancer shared information, experiences, and emotions in an OHF during the COVID-19 pandemic. Methods This qualitative study thematically analyzed posts from the discussion forums of an OHF provided by the UK charity, Breast Cancer Now. We selected 1053 posts from the time of 2 UK lockdowns: March 16, 2020, to June 15, 2020 (lockdown 1), and January 6, 2021, to March 8, 2021 (lockdown 3), for analysis, from 2 of the forum’s boards (for recently diagnosed people and for those undergoing chemotherapy). We analyzed the data using the original 6 steps for thematic analysis by Braun and Clarke but by following a codebook approach. Descriptive statistics for posts were also derived. Results We found that COVID-19 amplified the forum’s value to its users. As patients with cancer, participants were in a situation that was “bad enough already,” and the COVID-19 pandemic heightened this difficult situation. The forum’s value, which was already high for the information and peer support it provided, increased because COVID-19 caused some special information needs that forum users were uniquely well placed to fulfill as people experiencing the combined effects of having breast cancer during the pandemic. The forum also met the emotional needs generated by the COVID-19 pandemic and was valued as a place where loneliness during the pandemic may be relieved and users’ spirits lifted in a variety of ways specific to this period. We found some differences in use between the 2 periods and the 2 boards—most noticeable was the great fear and anxiety expressed at the beginning of lockdown 1. Both the beginning and end of lockdown periods were particularly difficult for participants, with the ends seen as potentially increasing isolation. Conclusions The forums were an important source of support and information to their users, with their value increasing during the lockdowns for a variety of reasons. Our findings will be helpful to organizations offering OHFs and to health care workers advising people living with breast cancer about sources of support.

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Mirroring, monitoring, modelling, belonging, and distancing: Psychosocial processes in an online support group of breast cancer patients

Cited by 18 publications

References 47 publications

The aims and effectiveness of communities of practice in healthcare: A systematic review

The aims and effectiveness of communities of practice in healthcare: A systematic review

Barriers and facilitators of type 1 diabetes self-care in adolescents and young adults

Use of Online Health Forums by People Living With Breast Cancer During the COVID-19 Pandemic: Thematic Analysis

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