Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2018 Mar 1;17(1):39.
doi: 10.1186/s12904-018-0291-7.

"Never at ease" - family carers within integrated palliative care: a multinational, mixed method study

Gülay Ateş  1 , Anne Frederieke Ebenau  2 , Csilla Busa  3 , Ágnes Csikos  3 , Jeroen Hasselaar  2 , Birgit Jaspers  4   5 , Johan Menten  6 , Sheila Payne  7 , Karen Van Beek  6 , Sandra Varey  7 , Marieke Groot  2 , Lukas Radbruch  4   5
Affiliations

"Never at ease" - family carers within integrated palliative care: a multinational, mixed method study

Gülay Ateş et al. BMC Palliat Care. .

Abstract

Background: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

Keywords: Burden; End-of-life; Family caregiving; Family carers; Integrated palliative care; Mixed methods; Palliative care; Rewards.

PubMed Disclaimer

Conflict of interest statement

Ethics approval and consent to participate

Informed consent was obtained before the start of the first interview. Participants were able to withdraw at any time if they wished to do so. Questionnaires were selected for their brief completion time, which was a maximum of approximately 10 minutes to reduce family carers’ burden [32, 34, 35]. In BE, DE HU, and UK, ethical approval was granted by the local ethical review committees. In the NL the study was waived from formal ethical review by the committee Arnhem-Nijmegen as this did not fall within the remit of the Dutch Act on Human Research.

Consent for publication

Not applicable.

Competing interests

The authors declare that they have no competing interest.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

References

    1. Gomes B, Higginson IJ, Calanzani N, Cohen J, Deliens L, Daveson BA, Bechinger-English D, Bausewein C, Ferreira PL, Toscani F, et al. Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. Ann Oncol. 2012;23(8):2006–2015. doi: 10.1093/annonc/mdr602. - DOI - PubMed
    1. Woodman C, Baillie J, Sivell S. The preferences and perspectives of family caregivers towards place of care for their relatives at the end-of-life. BMJ Supportive & Palliative Care: A systematic review and thematic synthesis of the qualitative evidence; 2015. - PMC - PubMed
    1. Broese van Groenou MI, De Boer A. Providing informal care in a changing society. Eur J Ageing. 2016;13(3):271–279. doi: 10.1007/s10433-016-0370-7. - DOI - PMC - PubMed
    1. Payne S, Brearley S, Milligan C, Seamark D, Thomas C, Wang X, Blake S, Turner M. The perspectives of bereaved family carers on dying at home: the study protocol of ‘unpacking the home: family carers’ reflections on dying at home. BMC Palliati Care. 2012;11:23. doi: 10.1186/1472-684X-11-23. - DOI - PMC - PubMed
    1. Hudson P, Payne S. Family caregivers and palliative care: current status and agenda for the future. J Palliat Med. 2011;14(7):864–869. doi: 10.1089/jpm.2010.0413. - DOI - PubMed

MeSH terms