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

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“Never at ease” – family carers within integrated palliative care: a multinational, mixed method study. / Ateş, Gülay ; Ebenau, Anne; Busa, Csilla; Csikos, Agnes; Hasselaar, Jeroen; Jaspers, Birgit ; Menten, Johan; Payne, Sheila; van Beek, Karen; Varey, Sandra; Groot, Marieke; Radbruch, Lukas.

In: BMC Palliative Care, Vol. 17, 39, 01.03.2018.

Research output: Contribution to journalJournal articlepeer-review

Harvard

Ateş, G, Ebenau, A, Busa, C, Csikos, A, Hasselaar, J, Jaspers, B, Menten, J, Payne, S, van Beek, K, Varey, S, Groot, M & Radbruch, L 2018, '“Never at ease” – family carers within integrated palliative care: a multinational, mixed method study', BMC Palliative Care, vol. 17, 39. https://doi.org/10.1186/s12904-018-0291-7

APA

Ateş, G., Ebenau, A., Busa, C., Csikos, A., Hasselaar, J., Jaspers, B., Menten, J., Payne, S., van Beek, K., Varey, S., Groot, M., & Radbruch, L. (2018). “Never at ease” – family carers within integrated palliative care: a multinational, mixed method study. BMC Palliative Care, 17, [39]. https://doi.org/10.1186/s12904-018-0291-7

Vancouver

Ateş G, Ebenau A, Busa C, Csikos A, Hasselaar J, Jaspers B et al. “Never at ease” – family carers within integrated palliative care: a multinational, mixed method study. BMC Palliative Care. 2018 Mar 1;17. 39. https://doi.org/10.1186/s12904-018-0291-7

Author

Ateş, Gülay ; Ebenau, Anne ; Busa, Csilla ; Csikos, Agnes ; Hasselaar, Jeroen ; Jaspers, Birgit ; Menten, Johan ; Payne, Sheila ; van Beek, Karen ; Varey, Sandra ; Groot, Marieke ; Radbruch, Lukas. / “Never at ease” – family carers within integrated palliative care: a multinational, mixed method study. In: BMC Palliative Care. 2018 ; Vol. 17.

Bibtex

@article{66b6852ce3d141aab33affd3f526804f,
title = "“Never at ease” – family carers within integrated palliative care: a multinational, mixed method study",
abstract = "BackgroundFamily 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{\textquoteright} 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.MethodsFamily 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.ResultsOn 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{\textquoteright} 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.ConclusionsData 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 {\textquoteleft}unit of care{\textquoteright} and partner in caregiving, to improve their knowledge about, and access to, and the support available.",
author = "G{\"u}lay Ate{\c s} and Anne Ebenau and Csilla Busa and Agnes Csikos and Jeroen Hasselaar and Birgit Jaspers and Johan Menten and Sheila Payne and {van Beek}, Karen and Sandra Varey and Marieke Groot and Lukas Radbruch",
year = "2018",
month = mar,
day = "1",
doi = "10.1186/s12904-018-0291-7",
language = "English",
volume = "17",
journal = "BMC Palliative Care",
issn = "1472-684X",
publisher = "BIOMED CENTRAL LTD",

}

RIS

TY - JOUR

T1 - “Never at ease” – family carers within integrated palliative care: a multinational, mixed method study

AU - Ateş, Gülay

AU - Ebenau, Anne

AU - Busa, Csilla

AU - Csikos, Agnes

AU - Hasselaar, Jeroen

AU - Jaspers, Birgit

AU - Menten, Johan

AU - Payne, Sheila

AU - van Beek, Karen

AU - Varey, Sandra

AU - Groot, Marieke

AU - Radbruch, Lukas

PY - 2018/3/1

Y1 - 2018/3/1

N2 - BackgroundFamily 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.MethodsFamily 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.ResultsOn 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.ConclusionsData 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.

AB - BackgroundFamily 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.MethodsFamily 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.ResultsOn 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.ConclusionsData 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.

U2 - 10.1186/s12904-018-0291-7

DO - 10.1186/s12904-018-0291-7

M3 - Journal article

VL - 17

JO - BMC Palliative Care

JF - BMC Palliative Care

SN - 1472-684X

M1 - 39

ER -