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’ 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.
Highlights
Carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care
The initiative was either targeting one or more of the following diagnostic groups: advanced cancer, Chronic Obstructive Pulmonary Disease (COPD), Chronic Heart Failure (CHF) [23]. Within the literature, it is largely unknown how family carers experience integrated palliative care, with this paper we aim to investigate 1) the burdens and rewards associated with family caregiving within IPC networks, and 2) the effects of Integrated Palliative Care initiative(s) (IPC-i) support systems and interventions for family carers
We investigated correlations between family carers’ burden and demographics, patients’ quality of life (QOL) and family carers’ experiences with care
Summary
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. Van Groenou and de Boer, among others, draw attention to the fact that in European countries, an increase of persons requiring palliative care coincides with a “shrinking family size, the increased labour market participation of women and the rising retirement age”. These societal changes affect the availability of and pressure to informal carers and therewith the care situation of patients with noncurable disease [3, 6, 7]. Providing informal care usually lasts until the death of a patient, which makes the situation for family carers even more demanding [13]
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