Table 1 Definition and background of family care in the Netherlands

In this study, family caregiving is regarded as the wide range of aid or assistance in activities of daily living given by an unpaid and untrained person from someone’s direct social network, e.g. a partner, relative, grown-up child, friend, neighbor, or other acquaintance [1,2,3,4,5]. Family care may vary in intensity and duration, but, in any case, goes beyond what can reasonably be expected within the relationship [4]. In the Netherlands, several definitions and criteria for ‘family care’ exist, leading to different estimations of the number of caregivers [6]. Defined broadly, about 35% of people of 16 years and older reported providing unpaid help to someone close with health-related problems [6]. Although the terms are sometimes used interchangeably, we deliberately do not use the term ‘informal care’ to explicitly exclude volunteers from this study.

Family care occurs in several settings, i.e. for people suffering from serious illness, long-term mental health problems, or a disability. This study specifically focuses on family care in a palliative care context, as a consequence of metastasized cancer or long-term organ failure. Estimations concerning the number of caregivers in this context are difficult, especially if hand-on help from members of the wider social network, other than the ‘primary’ caring relative, is taken into account [7], which occurs in the majority of Dutch caregivers of terminally ill patients [8]. The lack of a clear-cut point of entering the end-of-life phase further problematizes the estimation [7, 9], as does the observation that not every ‘family caregiver’ recognizes himself or herself as such [3].