Utilization of social media communities for caregiver information support in stroke recovery: An analysis of content and interactions

Lobo, Elton H; Johnson, Tara M.; Frølich, Anne; Kensing, Finn; Rasmussen, Lene Juel; Hosking, Sarah; Page, Amy; Livingston, Patricia M.; Islam, Sheikh Mohammed Shariful; Grundy, John; Abdelrazek, Mohamed

doi:10.1371/journal.pone.0262919

Cited by 9 publications

(40 citation statements)

References 35 publications

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“…While there is an increased interest in researching health related quality of life in MG patients [25], the impact of peer-to-peer support has, to date, been largely unaddressed within the scienti c literature on the subject. In focusing on such, this study contributes to a growing body of literature investigating online health communities targeted at patient populations with speci c conditions including breast cancer [26], diabetes [27], stroke [28,29] and numerous rare diseases [1,3,18,30,31]: the results of which have shown that social media is an important information resource for many in the affected populations MG is no different in this regard. The high need for information amongst those affected by MG was recently demonstrated in a study analysing emails written to a specialised treatment centre and patient organisation body [32] and it appears that this need is not restricted to these channels.…”

Section: Discussionmentioning

confidence: 99%

Myasthenia Gravis: Utilising cross-platform quantitative content analysis to uncover and validate unmet needs

Legg,

Meisel,

Stein

et al. 2024

Preprint

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Background and Aims: Recent years have seen a rapid growth in the number of online health communities targeted at patients with long-term conditions. Myasthenia Gravis (MG) is a rare neurological disease for which such communities have not been analysed before. The aim of this study was to better understand the needs of the MG population through the collation and categorisation of questions that users of MG social media were asking fellow users on these platforms. Methodology: Systematic observation of four MG Facebook groups was conducted over a two-month period. Groups were selected for analysis based on the following systematic criteria: Language (English), Membership (≥ 5000 members), group activity (≥ 2 posts per week), target audience (general MG population: no specified sub-group e.g. country or gender based) and researcher engagement with group administrators. The study protocol was reviewed by the institutional review board of the Charité – Universitätsmedizin Berlin (EA2/106/22). During the observation period, data was extracted from individual posts featuring questions made across each group using a systematic and objective coding scheme. All data points were coded directly from the source and collated into an SPSS database (IBM SPSS V.27, SPSS). Absolute and relative frequencies were calculated for categorical variables and proportions were compared across groups to validate the credibility and relevance of different requests. Results: Of the 2062 posts observed (N = 2062), 1392 featured questions (n = 1392). Questions were asked by 787 unique users: 531 were identified as one-time users (67%) and 256 were identified as repeat users (33%). 656 users were classified as diagnosed (83%), 61 as seeking diagnosis (8%), 69 as family and/or friends (9%) and 1 as other (< 0%). Eight unique categories of questions were observed including MG treatment (31%), Symptoms (19%), Living with MG (12%), Diagnosis (10%), non-MG medication (11%), Tests (8%), Location (4%) and Other (4%). Conclusions: Members of the MG population make active use of online health communities to seek and discuss practical information concerning various aspects of the disease, its diagnosis and care. The openness and willingness of the sample population to share sensitive medical information shows a high need for information not entirely catered to by the medical profession.

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Section: Discussionmentioning

confidence: 99%

Myasthenia Gravis: Utilising cross-platform quantitative content analysis to uncover and validate unmet needs

Legg,

Meisel,

Stein

et al. 2024

Preprint

View full text Add to dashboard Cite

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“…The information preferred by the caregiver is expected to be personalized to individual situations and health literacy; with a majority of caregivers preferring visual demonstrations. The importance of visual demonstrations for the delivery of stroke information is not new, and has been discussed previously in a study by Lobo et al [ 19 ] as a preferred method to ensure maximum interaction. However, our findings show that the information provided is in the form of generic pamphlets and brochures with limited explanation from the healthcare professional that led to confusion.…”

Section: Discussionmentioning

confidence: 99%

“…These social media platforms were selected as it has in the past been used by organizations and individuals to actively engage and participate in healthcare. Moreover, it can promote better health management and decision-making processes [ 19 ].…”

Section: Methodsmentioning

confidence: 99%

Information, involvement, self-care and support—The needs of caregivers of people with stroke: A grounded theory approach

et al. 2023

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Background Globally, stroke is a leading cause of death and disability, with most care undertaken by caregivers who are generally family and friends without prior experience of care. The lack of experience or unpreparedness results in feelings of uncertainty, burnout, anxiety, burden, etc. Hence, it is necessary to identify the needs of caregivers to better support them in their caregiving journey and improve the quality of care delivered. Methods The study employed a grounded theory methodology that utilizes information gathered from literature reviews and social media to represent the needs and create a storyline visually. The storyline is further refined and evaluated using an online survey of 72 participants recruited through online stroke caregiving communities. Results The study identified four core categories of needs: (i) Information: sufficient information delivered in layman’s terms based on the individual situation of the caregiver and survivor through oral and hands-on demonstrations, (ii) Involvement: inclusion in the decision-making processes at different stages of recovery through face-to-face communication at the hospital, (iii) Self-care: ability to engage in work and leisure activities, (iv) Support: receive support in the form of resources, services and finances from different other stakeholders. Conclusions There is a need to create a caregiver-centered approach in stroke recovery to ensure limited obstruction to care and reduced uncertainty in stroke recovery. Moreover, through the inclusion of caregivers in stroke recovery, it may be possible to reduce the burden of care to the caregiver and ensure the satisfaction of the healthcare system throughout stroke recovery.

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“…The companions of patients who have suffered stroke need subsidies to increase their interaction with survivors and play their role as companions and thus assist patients to perform self-care supported (18) . Interventions that contribute to the supported selfmanagement of care demonstrate positive results for both companions and patients (19) .…”

Section: Discussionmentioning

confidence: 99%

Construction and validation of a serial album for companions of patients with stroke

et al. 2022

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Objectives: to construct and validate a serial album, to be used in hospital discharge planning of patients with stroke. Methods: a methodological study, with construction of a serial album, validity by 22 judges and assessment by 22 companions. Data were collected from the Health Education Content Validity Instrument, with the companions, from the Suitability Assessment of Materials. Results: the serial album has 21 pages. The overall Content Validity Index was equal to 0.87 among expert judges and 1.0 among companions. Conclusions: the educational technology constructed was considered valid by the judges and assessed as understandable by the companions so that it presented itself as a viable technological resource for use in the health education of companions of patients with stroke.

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Utilization of social media communities for caregiver information support in stroke recovery: An analysis of content and interactions

Cited by 9 publications

References 35 publications

Myasthenia Gravis: Utilising cross-platform quantitative content analysis to uncover and validate unmet needs

Myasthenia Gravis: Utilising cross-platform quantitative content analysis to uncover and validate unmet needs

Information, involvement, self-care and support—The needs of caregivers of people with stroke: A grounded theory approach

Construction and validation of a serial album for companions of patients with stroke

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