What does management mean for parents with a child with a life-limiting or life-threatening illness? Researchers spoke to various parents about their experiences with the care.
In healthcare, the emphasis is on stimulating one's own strength, adapting to a changing state of health or circumstances and increasing control over one's own life. This focus on self-direction and adaptability is reflected in the mission and vision of municipalities, care organizations, health insurers, etc. In 2015, this was translated into a transition of system changes with new legislation and decentralization of care and youth. This led to a change in working methods and relationships. On the one hand, professionals were expected to work independently, to offer customization and to establish a connection between the living and system world. On the other hand, (active) clients/patients were expected to realize their care and support from their own direction and network.
The interaction between client and professionals requires a new attitude
Research by the Social Cultural Planning Office (2021) into the expectations and results of five years of decentralized policy shows that this is not realistic. The interaction between client and professionals requires a new role and attitude in order to realize appropriate care. In child care for families with a serious child, we also see difficulties in providing proper care and support. Care that should be appropriate for the whole family. Specifically, you cannot treat a sick child like a small adult. Child care really requires something different and you also have to deal with the child, the parents, brothers / sisters and the professionals.
A recent review (Vallianatos 2021) explains what we mean by management in the context of families with a seriously ill child. It shows that the concept of direction has a multitude of definitions and related aspects. It also shows that the operationalization is unclear and not measurable.
Different needs require different approaches
But what about in practice? What does management mean for parents with a child with a life-limiting or life-threatening illness? The researchers talked to these parents about their experiences with the care and support. They talked extensively about directing. With this they hope to gain more insight into the parents' perspective on control. And they discover what is helpful for parents and what is not.
Qualitative research has been carried out at the seven regional Networks for Integral Child Care (NIK). A mirror meeting was organized in each NIK with 2 to 6 parents and professionals as listeners. A total of 28 parents participated. The results show that self-direction is a broad concept and encompasses a wide range of translations into practice. We also see differences in what parents need and want. Parents also experience control in their own way. These different needs require different approaches. Especially in the post-diagnosis phase, parents are thrown into the deep end and are unable to take control.
It seems important that engaged professionals pay attention to equipping families with information and skills. To be able to take control and make choices. Joint decision-making is an important aspect of governance. The results show different experiences in the extent to which decisions are made. Unfortunately, joint decision-making is not self-evident.
Parents also indicate that they cannot change their child's illness and therefore have no control over it. But that directing is influenced by everything that happens around their child. For example, organizational barriers are frustrating and hinder taking control. In particular, administrative burdens, protocols and red tape surrounding legislation and financing do not help. Parents depend on the professionals around them. What does help parents to take control? An open and friendly attitude towards the parents and really listening. Finally, innovations for organizing a dedicated and trusted point of contact are mentioned by parents as helping to take matters into their own hands. An example of this is the nursing case manager of a Kinder Comfort Team.
A qualitative study by Stephanie Vallianatos, Jessica Michgelsen, Hedwig JA van Bakel, Mirella MN Minkman