Parents of children with complex care needs get little rest. As the child gets older, it also becomes increasingly difficult to ask for help and support from the environment. That's why many parents are on their own. How can we help them catch their breath more often?
The Vereniging Gehandicaptenzorg Utrecht (VGU) (in English: Utrecht Disability Care Association) asked us to help them with their project “a Breather”. While so-called “respite care” (services to relieve parents) is increasingly being stripped down, they noticed that parents actually needed more help. They asked us; how can we offer those parents more breathing space, despite the financial and logistical challenges in healthcare delivery?
We interviewed parents of children with complex care needs, counselors and care coordinators. We visited care locations and looked at the options that already exist for parents. We discovered that respite care (for example spending a weekend at a care location every month) is a last lifesaver for parents who feel they are otherwise alone. They often experience a high threshold for asking friends or family for help, especially when their child's care needs intensify. It also proved very difficult for parents to put their own well-being first, even though they know their well-being is closely linked with their child's well-being. If they do come to the organisation for respite care, their capacity is already limited. These parents are extremely overburdened, and rarely catch their breath. It is therefore important to help them expand and strengthen their support network. So they don't have to face it alone anymore. In a co-creation workshop with the VGU project team, we developed a vision for the future; A world where the well-being of parents with a high burden of care is central: By timely and proactively guiding parents to a range of support that suits their families, we prevent them from being overburdened and isolated, and we help them build a strong safety net. The focus in the current healthcare delivery service for complex needs children is now on the children, but our research showed that it is essential to take care of the parents.
The team at the VGU was enthusiastic about the three promising concepts that were designed, as they lay a good basis for services that really put parents first. That is why we are now starting a pilot phase in the spring of 2024. Here, we will test all three services with a small group of parents; what do they think of these new services? Does it meet their needs? Does it really give them more breathing space? We always learn a lot from doing such pilots. After that, it is usually necessary to adapt the concepts and prepare them to be implemented on a larger scale. We will take these next steps while working very closely with the VGU team.
We designed a range of services that intervene in parents' care journey at various locations. All of the concepts help parents to build their support network wider and stronger. Facilitated and supported by the dedicated healthcare professionals at the VGU. We came up with 3 innovative forms of services for the VGU: 1. Parent welfare evening - Facilitated conversation where VGU partners and other care partners guide parents in setting up a support network. This innovation is an answer to the challenge of how parents can build a supportive network not once but for a long time. 2. Parents check-in - Easy way to connect parents at local and regional levels ('allies' contact '). This innovation is an answer to the challenge of how parents can have more valuable contact with each other in the concerns they share. 3. Babysitting Coach - A toolkit of services and products that make it possible for VGU partners and other care partners to stay or babysit with friends or family. This innovation is an answer to the challenge of how it will be easier and more natural to organize babysitting and staying within the parents' own network.
