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

In order to improve the well-being of not only people with disabilities, but also their loved ones, it is important to know how family members experience and value their lives as ‘neighbours’, and how this develops over time. Previous research on this topic dates back to 2019. Since then, a lot of research has been done about relatives, as well as regarding the Corona epidemic that has had serious consequences for them. That is why an exploration of the literature is carried out and submitted to a meeting with experts. The results of this study provide guidance for further research in the 2019 study.

The burden of health care and its consequences for health are a recurring topic
Recent studies have paid much attention to the mental and physical health of relatives in relation to the burden of their care. By the way, these topics have been researched for quite some time, and a lot is known about them. It is clear from the literature that the perceived stress of care and task organization has a negative impact on the health of relatives. It is therefore important in future research 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. Therefore, recent studies have paid more attention to family life as a whole. For example, the work status of parents is included in the study, as well as the occurrence of tensions between family members, changes in the division of tasks between partners and additional responsibilities given to children in the family. The results of these studies, in turn, raise the question of the need to provide support to family members and the family as a whole. There are not yet many studies of family life in single-parent families and mixed families where one family member has a disability. Future research could focus on this.

Research mainly between mothers and partners of a family member with a disability
In a literature search in the past three years, we mainly found studies on mothers and partners of people with disabilities. Other relatives – such as parents, children, brothers and sisters – were less likely to be researched. This also applies to persons with immigrant backgrounds and children of parents with disabilities. Future research could focus more on these groups.

About Search
For the literature review, 43 recently completed studies (January 2018 – May 2022) on the quality of life of relatives of persons with disabilities in the Netherlands were collected and analyzed. The results were discussed in an expert meeting with 25 participants, including relatives and experts in the professional field, politics and science. Just as in 2019, Nivel conducted the research in collaboration with Academic Workplace targeting people with severe (severe) and multiple disabilities (University of Groningen) and the academic workplace living with an intellectual disability (Transo, Tilburg University). The literature review was conducted within the ZonMw “Simply Special” programme. The study is a starting point for further research into the quality of life of relatives of persons with disabilities.

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