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.
