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“Never at ease” – family carers within integrated palliative care: a multinational, mixed method study

Overview of attention for article published in BMC Palliative Care, March 2018
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About this Attention Score

  • In the top 25% of all research outputs scored by Altmetric
  • High Attention Score compared to outputs of the same age (89th percentile)
  • Good Attention Score compared to outputs of the same age and source (79th percentile)

Mentioned by

news
1 news outlet
blogs
1 blog
policy
1 policy source
twitter
9 X users
facebook
2 Facebook pages

Citations

dimensions_citation
50 Dimensions

Readers on

mendeley
232 Mendeley
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Title
“Never at ease” – family carers within integrated palliative care: a multinational, mixed method study
Published in
BMC Palliative Care, March 2018
DOI 10.1186/s12904-018-0291-7
Pubmed ID
Authors

Gülay Ateş, Anne Frederieke Ebenau, Csilla Busa, Ágnes Csikos, Jeroen Hasselaar, Birgit Jaspers, Johan Menten, Sheila Payne, Karen Van Beek, Sandra Varey, Marieke Groot, Lukas Radbruch

Abstract

Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers' every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services. Family carers looking after patients with cancer, chronic obstructive pulmonary disease or chronic heart failure were purposefully recruited at 22 IPC-i in Belgium, Germany, Hungary, the Netherlands and the United Kingdom in the course of the project "Patient-centred palliative care pathways in advanced cancer and chronic disease" (InSup-C). Semi-structured interviews (n = 156) and 87 quantitative questionnaires (CRA, POS, CANHELP Lite) were conducted with family carers. Interviews were analysed with transnationally agreed thematic codes (MAXQDA or NVivo). Statistical tests (SPSS) were carried out in accordance with the characteristic value of the items and distributions. On average, quantitative data showed moderate burden, but the qualitative findings indicated that this burden might be underrated. There is some evidence that IPC-i with well-developed professional care networks and communication systems relieved family carers' burden by direct and indirect interventions; e.g. provision of night shift nurses or psychological support. Needs of family carers were similar in all participating countries. However, in all countries IPC-i mostly offered one-off events for family carers, lacking systematic or institutionalised support structures. Data suggest that, most IPC-i did not pay enough attention to the needs of most family carers, and did not offer proactive care and access to supportive resources to them (e.g. training, respite care, access to resources). We recommend recognizing family carers as part of the 'unit of care' and partner in caregiving, to improve their knowledge about, and access to, and the support available.

X Demographics

X Demographics

The data shown below were collected from the profiles of 9 X users who shared this research output. Click here to find out more about how the information was compiled.
Mendeley readers

Mendeley readers

The data shown below were compiled from readership statistics for 232 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 232 100%

Demographic breakdown

Readers by professional status Count As %
Student > Master 31 13%
Student > Bachelor 23 10%
Researcher 17 7%
Student > Ph. D. Student 16 7%
Unspecified 14 6%
Other 43 19%
Unknown 88 38%
Readers by discipline Count As %
Nursing and Health Professions 50 22%
Medicine and Dentistry 34 15%
Unspecified 14 6%
Social Sciences 12 5%
Psychology 6 3%
Other 20 9%
Unknown 96 41%
Attention Score in Context

Attention Score in Context

This research output has an Altmetric Attention Score of 24. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 20 May 2022.
All research outputs
#1,548,927
of 24,914,266 outputs
Outputs from BMC Palliative Care
#115
of 1,440 outputs
Outputs of similar age
#33,689
of 336,547 outputs
Outputs of similar age from BMC Palliative Care
#10
of 43 outputs
Altmetric has tracked 24,914,266 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 93rd percentile: it's in the top 10% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 1,440 research outputs from this source. They typically receive more attention than average, with a mean Attention Score of 9.2. This one has done particularly well, scoring higher than 92% of its peers.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 336,547 tracked outputs that were published within six weeks on either side of this one in any source. This one has done well, scoring higher than 89% of its contemporaries.
We're also able to compare this research output to 43 others from the same source and published within six weeks on either side of this one. This one has done well, scoring higher than 79% of its contemporaries.