Like most websites, the website of the University of Humanistic Studies uses cookies. Dutch regulations require websites to ask for approval the first time the site is visited. More information

ZonMw Pearl for research on informal carers with migration background

15 April 2024

In 'Taking Care of Caregivers', research and practice come together

The Taking Care of Caregivers project supports informal carers with a migration background and encourages shared care. The project, conducted by social partners Pharos, NOOM, and MantelzorgNL, in collaboration with the University of Humanistic Studies, was awarded a 'Parel' from ZonMw on Monday for its successful way of linking research and practice. UvH professor Evelien Tonkens: "Fantastic that we could directly develop tools for practice".  

"The group of migrants with dementia is growing. And with this group, care is often on the shoulders of 1 informal carer. Sharing care is little talked about, neither with other family members nor with care professionals. Care professionals themselves sometimes find it difficult to talk to family members. Informal carers can become overburdened as a result." Mijke Elbers of MantelzorgNL clearly explains the reason for Taking Care of Caregivers. 

With the Parel, ZonMw gives extra attention to a project result. The Taking Care of Caregivers project supports informal carers with a migration background and encourages better cooperation between informal and formal care. By making the sharing of care negotiable, overburdening of informal carers can be prevented.  

Making it discussable

Making it discussable is very important to prevent overburdening informal carers, says professor Evelien Tonkens of the University of Humanistic Studies and one of the initiators of the project. She has been researching informal carers with a migration background for some time. "Not talking about task sharing with other family members and little use of professional support are factors that cause overburdening," she says. Together with Sawitri Saharso, Evelien Tonkens supervised Menal Ahmad's PhD research, which focused on the problems of informal carers with a migration background.

There are, the study shows, several reasons why the care use of these informal carers lags behind. Tonkens: "If you care for a loved one for a long time, a sense of pride develops after a while. Pride that you take on all these tasks in addition to all the other things that are expected. And sometimes moral superiority over family members who do less or nothing at all. That pride and moral superiority become part of your identity, and make sharing care more difficult." In addition, Dutch care work is demand-driven, which can make caregivers think that where there is no demand, there is no need.

According to Tonkens, for good care, it is important that care providers start the conversation about these issues. With knowledge from the research, practical tools have been developed to better support both the informal carer and the care provider and stimulate the conversation. An open attitude, sincere curiosity, cultural sensitivity and recognition of the informal carer can help initiate this conversation. 

Developing a toolkit

From the Taking Care of Caregivers project, several practical tools have been developed to have this good conversation. The tools are aimed at both informal carers themselves and care professionals. The comprehensive toolkit (in Dutch) is available on the Pharos website and includes a podcast, stories from practice, a webpage and an e-learning for professionals.

Collaboration between research and practice  

What makes this Parel-project special is the cooperation between Pharos, expertise centre for health inequalities, MantelzorgNL, NOOM and the University of Humanistic Studies. As a result, all insights from the research were directly incorporated into the development of instruments in care among informal carers with a migration background. 

Evelien Tonkens emphasises that, as project leader, Pharos linked all parties and areas of expertise "It is fantastic that this project also allowed us to directly develop instruments for practice. Everyone had their own tasks and goals, more research-oriented or more practice-oriented, and went for it."

Active involvement of carers themselves

Informal carers were also actively involved and heard, stresses Jeanny Vreeswijk- Manusiwa, working at NOOM during the project. Much needed, she thinks.  The voice of these informal carers is often not heard. "But you cannot research people's circumstances and behaviour without involving them yourself," she says. 

Using the photovoice method, participants recorded their lives, literally giving researchers a glimpse into their lives. "The reactions are very positive: people really feel seen and heard." Chinese, Moroccan, Moluccan and Turkish informal carers are actively involved in the project through MantelzorgNL. Mijke Elbers: "With videos and stories, we share the experiences and perspectives of these informal carers. After all, they are central to this research. Ultimately, the tools were developed for them."

Source: ZonMw.

photo: Valerie Kuypers

PhD research

In November 2022, Menal Ahmad received his PhD from the University of Humanistic Studies with the thesis Dementia care in families with a migration background: Dealing with gendered and cultural obstacles to shared care.

Read about it and download the thesis:
Dementia care in families with a migration background

The Taking Care of Caregivers project supports informal carers with a migration background and encourages shared care. The project was awarded a 'Parel' by ZonMw.