Methodology and baseline characteristics of a randomized controlled trial testing a health care professional and peer-support program for patients with chronic obstructive pulmonary disease: The BREATHE2 study

Aboumatar, Hanan; Naqibuddin, Mohammad; Neiman, Joseph; Saunders, Jamia; Kim, Samuel; Chaudhry, Harman; Morales, Enrique; Robinson, Nancy; McBurney, Marjorie; Jager, Leah; Ajayi, Tokunbo; Bone, Lee R.; Chung, Suna; B, Farrell; Jin, Hui Joo; Linnell, John; Pirfo, Marlene; Rańd, Cynthia S.; Riley, Peggy; Salvaterra, Carmen; Shea, Kai; Singh, Jagdeepak; Wise, Robert A.

doi:10.1016/j.cct.2020.106023

Cited by 7 publications

(31 citation statements)

References 50 publications

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“…Therefore, the flexibility afforded by online peer support groups was distinctly advantageous in providing control [ 35 , 61 ]. Additionally, participants felt empowered when they could support others, as upheld by the literature [ 62 , 63 ]. Of course, individuals in this scenario could face undue burdens [ 62 ], though participants did not indicate this, perhaps as responsibility was shared across many group members.…”

Section: Discussionmentioning

confidence: 99%

“…Patients provided unique forms of knowledge based on embodied illness experience [ 59 , 77 ], often afforded greater credibility by other patients [ 63 ]. It is worth invoking Kleinman’s [ 78 ] disease versus illness distinction: disease as the biological mechanisms doctors focus on and illness as the “innately human experience of symptoms and suffering.” Long COVID has impacts beyond corporeal disease definitions prioritized by biomedicine; instead, it embodies illness narratives with implications felt heavily at the experiential level.…”

Section: Discussionmentioning

confidence: 99%

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Exploring Online Peer Support Groups for Adults Experiencing Long COVID in the United Kingdom: Qualitative Interview Study

Day¹

2022

J Med Internet Res

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Background Long COVID is an emerging public health concern. A growing number of individuals are experiencing prolonged, multifaceted health challenges and accompanying social impacts after COVID-19 infections. Support services in the United Kingdom remain insufficient and fraught with complexity. Responding to persistent gaps in care, patients joined forces in online peer support groups. However, little is known about how these groups impact patients with long COVID and their lived experiences of the condition. Objective The aim of this study is to explore the roles that online peer support groups take on and the impact they have on patients experiencing and recovering from long COVID in the United Kingdom. In doing so, this study aims to identify ways to inform future long COVID care, including online peer support and broader long COVID care structures. Methods I conducted 11 semistructured interviews virtually on Zoom in July 2021. Participants had long COVID, were UK-based, and used long COVID online peer support groups. Topics discussed in interviews included what led participants to these groups, experiences within them, and feelings about the roles that the groups took on. I analyzed the results by manually conducting thematic analysis. Results Long COVID online peer support groups had numerous roles, significantly impacting users. I identified 5 themes and 13 subthemes through thematic analysis. The identified themes were as follows: (1) filling professional care gaps, (2) societal awareness, (3) engagement behavior, (4) diversity, and (5) social connections. Given the void of professional support, those experiencing long COVID gained some benefit from these groups. However, participants emphasized notable concerns about the all-encompassing roles these groups embody and speculated over potential improvements. Conclusions If used appropriately, online peer support groups could be immensely beneficial for patient well-being, beyond simply filling gaps in long COVID care. However, it appears many groups take on more than they can manage and become potentially harmful. Through prioritizing patient voices, long COVID care could be restructured to maximize peer support’s benefits within broader care structures.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Exploring Online Peer Support Groups for Adults Experiencing Long COVID in the United Kingdom: Qualitative Interview Study

Day¹

2022

J Med Internet Res

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“…In studies on other chronic diseases (e.g., diabetes, chronic obstructive pulmonary disease), support from fellow patients has been found to help patients increase their ability to adapt to the illness and improve their health-related quality of life. 41 , 42 However, a qualitative study in Germany reported negative effects of social support on IBD patients. 43 Participants in this study described that in support groups, they tended to compare who was more successful in dealing with the condition, leading to competition and anxiety rather than emotional support for those in a worse condition.…”

Section: Discussionmentioning

confidence: 99%

Psychosocial Adaptation Among Inflammatory Bowel Disease Patients and Associated Factors: A Cross-Sectional Study

Xu¹,

Liu²,

Jiang³

et al. 2022

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Purpose Patients with inflammatory bowel disease (IBD) suffer from physical symptoms and psychosocial issues. This generates risks of psychosocial maladjustment that is closely linked with self-care ability and health-related quality of life. The study aimed to explore psychosocial adaptation of IBD patients in China and the influencing factors from individual and family levels. Patients and Methods Using a cross-sectional design, 191 Chinese patients with IBD were recruited from October 2020 to September 2021. General information questionnaire, general family functioning scale, resilience scale for IBD, and psychosocial adaptation questionnaire for IBD were used for investigation. Multivariate linear regression was used to identify predictive factors of psychosocial adaptation. Results IBD patients reported a moderate level of psychosocial adaptation. Regression analysis showed that personal resilience especially the three dimensions (i.e., positive illness perception, disease management, and support from fellow IBD patients), general family functioning, and disease conditions (i.e., extra-intestinal manifestations and current disease status) were the main contributing factors of psychosocial adaptation, explaining 49.3% of the total variance. Conclusion The findings suggest that healthcare providers could focus on improving patients’ illness perception about IBD and strengthening their disease management abilities, together with optimizing patients’ family functioning to enhance their psychosocial adaptation level.

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Section: Who Is the Expert? Examining The Patient-expert Relationshipmentioning

confidence: 99%

Exploring Online Peer Support Groups for Adults Experiencing Long COVID in the United Kingdom: Qualitative Interview Study (Preprint)

Day¹

2022

Preprint

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BACKGROUND Long COVID is an emerging public health concern. A growing number of individuals are experiencing prolonged, multifaceted health challenges and accompanying social impacts after COVID-19 infections. Support services in the United Kingdom remain insufficient and fraught with complexity. Responding to persistent gaps in care, patients joined forces in online peer support groups. However, little is known about how these groups impact patients with long COVID and their lived experiences of the condition. OBJECTIVE The aim of this study is to explore the roles that online peer support groups take on and the impact they have on patients experiencing and recovering from long COVID in the United Kingdom. In doing so, this study aims to identify ways to inform future long COVID care, including online peer support and broader long COVID care structures. METHODS I conducted 11 semistructured interviews virtually on Zoom in July 2021. Participants had long COVID, were UK-based, and used long COVID online peer support groups. Topics discussed in interviews included what led participants to these groups, experiences within them, and feelings about the roles that the groups took on. I analyzed the results by manually conducting thematic analysis. RESULTS Long COVID online peer support groups had numerous roles, significantly impacting users. I identified 5 themes and 13 subthemes through thematic analysis. The identified themes were as follows: (1) filling professional care gaps, (2) societal awareness, (3) engagement behavior, (4) diversity, and (5) social connections. Given the void of professional support, those experiencing long COVID gained some benefit from these groups. However, participants emphasized notable concerns about the all-encompassing roles these groups embody and speculated over potential improvements. CONCLUSIONS If used appropriately, online peer support groups could be immensely beneficial for patient well-being, beyond simply filling gaps in long COVID care. However, it appears many groups take on more than they can manage and become potentially harmful. Through prioritizing patient voices, long COVID care could be restructured to maximize peer support’s benefits within broader care structures.

show abstract

Methodology and baseline characteristics of a randomized controlled trial testing a health care professional and peer-support program for patients with chronic obstructive pulmonary disease: The BREATHE2 study

Cited by 7 publications

References 50 publications

Exploring Online Peer Support Groups for Adults Experiencing Long COVID in the United Kingdom: Qualitative Interview Study

Exploring Online Peer Support Groups for Adults Experiencing Long COVID in the United Kingdom: Qualitative Interview Study

Psychosocial Adaptation Among Inflammatory Bowel Disease Patients and Associated Factors: A Cross-Sectional Study

Exploring Online Peer Support Groups for Adults Experiencing Long COVID in the United Kingdom: Qualitative Interview Study (Preprint)

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