In healthcare, the emphasis is on stimulating one’s own strength and increasing control over one’s own life. A current review showed that the concept of control in families with children with chronic illness, has a broad range of definitions and related aspects. This follow up study focuses on control in practice, the experiences of parents with children with a life-limiting or life-threatening illness to get a deeper understanding of their perspective on control.
A qualitive study was performed in the Netherlands, in seven Regional Networks Integrated Childcare (NIC). In every NIC a mirror-meeting was organized with 2 to 6 parents and professionals present as listeners. A Total of 28 parents participated.
The results showed that control is a broad concept and encompasses a wide range of translations into practice. Also, we see differences in what parents need and prefer and their individual experiences of their support to perceive control. These different needs require different approaches. Especially in the initial phase after diagnosis, parents are thrown into the deep and not able to take control. It seems important that professionals involved with the family pay attention to equip families. Shared decision- making is an important aspect of control, the results show different experiences to what extent decisions are made. Consciously putting shared decision-making on the agenda is not self-evident. Further, the results showed that you cannot change your child’s illness, you cannot have control over that part. Control is influenced by everything that happens around the child. Organizational barriers are frustrating here and interfere with taking control, especially administrative burdens, protocols and hassle around legislation/financing are not helpful. Parents are depending on the professionals around them. An open and friendly attitude towards the parents, truly listening is facilitating and helps parents to take control. Innovations for organizing a dedicated and trusted point of contact are mentioned by parents as helping to take control.