Who cares for those who care? Better support for informal caregivers is a report of a pilot study about caregivers support which was published in March 2018 with contributions of SSC researchers Bianca Suanet (Sociology), Marieke van Wieringen (Organization Sciences), Alice de Boer (Sociology and the Social and Cultural Planbureau), Bianca Beersma (Organization Sciences) and Olivier Taverne (Sociology).
The goal of the pilot study is to give insight into how informal caregivers experience the current support for informal caregivers and how they would like this to be organised. The report also looks at the resilience and the role of health care organizations and their employees in the support of informal caregivers. To look at the issue from several areas informal caregivers, health care professionals and healthcare managers have been interviewed.
The pursuit of a participatory society where informal caregivers play a more important role in the health care process, asks for more support for this group. Up to this moment, healthcare organizations are mostly focused on care receivers. In 2016 one in ten informal caregivers was burned out (a.o. De Klerk, 2017) and this could be increasing in the near future if participatory society policy becomes more common. However, an alternative outcome could be that the support for informal caregivers would be arranged so that informal caregivers can give care to their relatives without burdening them too much. This would benefit the resilience of this group, and of the society as a whole.
A foursome of core findings resulted from this pilot study. First of all, caregivers often struggle with explicitly indicating what is helpful for them; this should be inquired and discussed more often and thoroughly in the care process. Secondly, informal caregivers indicate that their wishes, opinions and concerns are often not included in the care process. The care receiver is taken as the main point of focus by professionals and managers and the informal caregiver often feels troubled to indicate the burden of their caregiving duties towards the professional caregiver. Thirdly, the informal caregivers consider the caregivers support and the support provided by professionals to the care receiver as one connected entity, more than the professionals. The professionals view these two forms of support as two separate worlds. Lastly, professionals seem to experience tension between the experienced responsibility for offering informal caregivers support (is it extra or is it an integral part of the regular work?) and the sometimes limited possibilities of time and available knowledge to successfully offer this informal caregiver his informal caregivers support.
The outcomes of this study emphasize the importance of taking the wishes, meanings and concerns into account when considering the policy for informal caregivers support and the care process as a whole. Therefore the report not only gives a description of the issues stated above but also a series of concrete recommendations for practice, based on our findings.
Who cares for those who care? Better support for informal caregivers