ArticlePloS one2024
"Are you listening?": Experiences shared online by family caregivers of patients in the palliative phase during the Covid-19-pandemic.
Article in PloS one, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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10 authors.
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Abstract
objectivesIn palliative care, it is important for family caregivers to spend time with and care for the patient, and to receive (in)formal support. These elements were compromised during the Covid-19-pandemic. This study investigates what family caregivers of non-Covid-19-patients in the palliative phase shared online during the first wave of the pandemic, and what their communicative intentions were with posting online.
methodsTo investigate what family caregivers shared online, a reflexive thematic analysis was performed on online newspaper articles and posts on Twitter, Facebook and online forums. To investigate family caregivers' communicative intentions with social media posts, content analysis was conducted guided by Speech Act Theory.
resultsIn total, 412 posts and articles were included, the majority being Tweets (86.7%). Four themes were constructed: 1) 'Being out of touch', 2) 'Fear, worries and uncertainties, 3) 'Disbelief, anger and resistance', and 4) 'Understanding, acceptance and gratitude'. Family caregivers felt overwhelmed with anger, sadness and anxiety, yet some expressing milder or positive attitudes towards the new circumstances. Family caregivers mostly posted online to share their personal experiences and emotions, and to express their opinions about the restrictions.
conclusionsThe pandemic had distinct implications for family caregivers of non-Covid-19-patients in the palliative phase. In future similar circumstances, restrictions should be tailored to individual conditions and interventions should be in place to facilitate contact between patients, family caregivers and healthcare professionals and to support family caregivers.
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