Abstract
Background/aims: In 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. The perspective of family caregivers of patients with lifethreatening diseases other than Covid-19 has been underrepresented in
the literature so far. This online media search investigates 1) the experiences of bereaved and non-bereaved family caregivers of non-Covid19-patients in the palliative phase during the first wave of the pandemic
and 2) family caregivers’ communicative intentions for posting online.
Methods: To investigate family caregivers’ experiences during the pandemic, 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.
Results: In total, 412 posts and articles were included, of which the
majority were Tweets (87%). Four themes were constructed:
1) ‘Being out of touch’,
2) ‘Fear, worries and insecurities’,
3) ‘A call to action’, and
4) ‘Understanding, acceptance and gratitude’.
Mostly, family caregivers felt overwhelmed with anger, sadness, and
anxiety, yet some expressed 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.
Conclusions: The 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 each individual context to
ensure that contact between patients, family caregivers and healthcare
professionals is remained at all times.
The project was funded by The Netherlands Organization for Health
Research and Development (ZonMw; grant numbers 844001804 and
844001706) and the Jonker Driessen Foundation.
to spend time with and care for the patient, and to receive (in)formal
support. These elements were compromised during the Covid-19-
pandemic. The perspective of family caregivers of patients with lifethreatening diseases other than Covid-19 has been underrepresented in
the literature so far. This online media search investigates 1) the experiences of bereaved and non-bereaved family caregivers of non-Covid19-patients in the palliative phase during the first wave of the pandemic
and 2) family caregivers’ communicative intentions for posting online.
Methods: To investigate family caregivers’ experiences during the pandemic, 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.
Results: In total, 412 posts and articles were included, of which the
majority were Tweets (87%). Four themes were constructed:
1) ‘Being out of touch’,
2) ‘Fear, worries and insecurities’,
3) ‘A call to action’, and
4) ‘Understanding, acceptance and gratitude’.
Mostly, family caregivers felt overwhelmed with anger, sadness, and
anxiety, yet some expressed 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.
Conclusions: The 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 each individual context to
ensure that contact between patients, family caregivers and healthcare
professionals is remained at all times.
The project was funded by The Netherlands Organization for Health
Research and Development (ZonMw; grant numbers 844001804 and
844001706) and the Jonker Driessen Foundation.
| Original language | English |
|---|---|
| Article number | doi.org/10.1177/02692163241242338 |
| Pages (from-to) | 86-87 |
| Journal | Palliative Medicine |
| Volume | 38 |
| Issue number | S1 |
| DOIs | |
| Publication status | Published - 2024 |
| Event | European Association of Palliative Care World Research Congress - Barcelona, Spain Duration: 16 May 2024 → 18 May 2024 https://eapccongress.eu/2024/ |