The report Wie zorgt voor degenen die zorgen? Naar een betere mantelzorgondersteuning
came out in March 2018 and was published as the conclusion of a pilot study on informal caregivers. Social scientists Bianca Suanet
, Marieke van Wieringen
, Alice de Boer
, Bianca Beersma
and Olivier Taverne contributed to this report.
The aim of the pilot study is to gain a preliminary insight into how informal caregivers perceive the current level of the informal caregiving support system and how they would like it to be organized instead. Additionally, the report focuses on healthcare organizations and their staff and on how they deal with resilience in relation to the informal caregiving support system. To approach this subject from several different perspectives, interviews were conducted with informal caregivers, care professionals and management of healthcare organizations.
The creation of a participatiesamenleving, a society in which everyone plays their part, will lead to an increasingly pivotal role for informal caregivers in the healthcare process. As a result, more attention will need to be paid to the informal caregivers support system. Currently, healthcare organizations are still primarily focused on caretakers. Reports published in 2016 showed that one out of every ten informal Dutch caregivers was overworked. The report also states that in the near future this percentage will rise significantly when the participatiesamenleving becomes more commonplace. However, an alternative outcome could be that the support system will be organized in such a way that it will not lead to significant additional responsibilities for the informal caregivers. This would greatly improve the resilience of the informal caregivers and society on the whole.
The outcomes of the pilot study lead to four main conclusions. The first is that informal caregivers often have trouble indicating what it is they themselves need. This question should be asked more explicitly and discussed during the support process. Secondly, informal caregivers indicate that more often than not their wishes, opinions and interests are not considered in the care process: care professionals and managers predominantly focus on the caretaker. The informal caregivers often feel conflicted in indicating that the duties of informal caregiving weigh heavily on them and that additional caregiving support is actually required. The third conclusion is that informal caregivers see the informal caregiver support system and the regular care given by care professionals to caretakers as one and the same process, while the care professionals primarily see these as two separate processes. Finally, there seems to be some friction between care professionals and the perceived responsibility they feel for offering informal care giving support (is this an additional task or is it an integral part of their duties?) versus the limited possibilities they have to effectively offer the right level of informal care giving support.
The results of the pilot study underline that it is of the utmost importance to take into account the the wishes, opinions and interests of informal caregivers in the shaping of informal care-giving policy and the healthcare processes as a whole. Based on our findings, the report therefore also presents a series of practical recommendations.