Needs more attention to family life

Family life deserves more attention in research into the quality of life of relatives of people with disabilities

In recent years, in the Netherlands, more and more attention has been paid to the quality of life of relatives – such as parents, partners and brothers and sisters – of people with disabilities. In addition to the well-being of individual relatives, recent research focuses on family life, the support needs of all family members and the organization of care. Mothers and partners are often the relatives involved in research, while others – such as brothers, sisters and children – remain underexposed. This is the result of research carried out by Nivel in collaboration with two academic workshops.

In order to improve the well-being not only of people with disabilities, but also of their relatives, it is important to know how family members experience and value their lives as ‘neighbors’ and how this develops over time. The previous research on this topic dates from 2019. Since then, a lot of research has been done on relatives, also in relation to the corona pandemic, which had major consequences for them. Therefore, a literature survey was carried out and presented to a meeting with experts. The results of this study provide guidance for follow-up research for the 2019 study.

Health burden and consequences for health are recurring topics
More recent studies have paid close attention to relatives’ mental and physical health in relation to their care burden. Incidentally, these topics have been researched for quite some time, so much is known about them. It is clear from the literature that the perceived pressure from caring and regulatory tasks has a negative effect on relatives’ health. In future research, it is therefore important to continue to monitor the situation in which family members find themselves and to continue to monitor their experiences.

New topics about family and family life deserve attention
If a family member has a disability, it changes the lives of all family members. More recent studies have therefore paid more attention to family life as a whole. For example, the work situation of the parents is included in the study, as is the occurrence of tension between family members, changes in the distribution of tasks between partners and the additional responsibilities that children receive in the family. The results of these studies, in turn, raise the question of the need to provide support to individual family members and to the family as a whole. There are not yet many studies on family life in specific single parent and blended families where a family member has a disability. Future research could focus on this.

Mainly research among mothers and partners of a family member with a disability
In the literature search of the past three years, we found mainly studies of mothers and partners of people with disabilities. Other relatives – such as fathers, children, brothers and sisters – were less frequently the subject of research. This also applies to people with a migration background and children of parents with disabilities. Future research could focus more on these groups.

About the research
For the literature review, 43 recently completed studies (January 2018-May 2022) on the quality of life of relatives of people with disabilities in the Netherlands were collected and analyzed. The results were discussed at an expert meeting with 25 participants, including relatives and experts from the subject area, politics and science. As in 2019, Nivel carried out the research in collaboration with Academic Workplace aimed at people with (very) severe and multiple disabilities (University of Groningen) and Academic Workplace Living with an Intellectual Disability (Tranzo, Tilburg University). The literature review was carried out within the ZonMw program ‘Simply Special’. The study is the springboard for follow-up research into the quality of life for relatives of people with disabilities.

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