KOMPAS

Recruiting

Who can enter

• Parents of children (0-18 years) with a life-limiting or life-threatening condition

• Healthcare professionals in primary, secondary, or tertiary care who provide care for a child with a life-limiting or life-threatening condition

Goal

The goal of this study is to gain insight into:

• The experiences of parents with collaboration with and between healthcare professionals involved in their child’s care

• The experiences of healthcare professionals with collaboration with parents and with other involved professionals

• How the process of developing and using a new working method for collaborative meetings within a healthcare organization unfolds

• How the collaborative meetings take place

• The changes in collaboration surrounding a child with a life-limiting or life threatening condition following the collaborative meeting

Background

When we talk about “care in the right place,” we see that in the care for children with a life-limiting or life-threatening condition (pediatric palliative care), an increasing number of children reside and receive care at home. This allows the child and family to remain in their home environment, with parents playing a key role. This shift from hospital-based care to daily care at home leads to an expanded role for parents, but also increases the responsibilities of home-based healthcare providers, such as home care nurses and general practitioners. Hospital-based professionals often remain involved in the child’s care as well.

High-quality care for children with a life-limiting or life-threatening condition is not possible without close collaboration between parents, home-based healthcare providers, and hospital-based professionals. However, these three worlds often look very different, which may lead to challenges in collaboration and communication.

As collaboration is not always easy, we have developed a plan together with parents, healthcare professionals from various backgrounds, policy makers, and researchers to improve mutual collaboration. We are doing this through a new working method for so-called collaborative meetings.

Among others, healthcare professionals at the Princess Máxima Center organize a collaborative meeting with parents and (a selection of) the professionals involved in the child’s care. This meeting is part of standard care. If parents and professionals agree, they receive a short questionnaire (filling in taking no more than 5 minutes) before and some weeks after the meeting. In this questionnaire, we ask them to rate how they think collaboration around the child is going. If parents and professionals are willing to, an additional interview may take place to discuss their experiences with collaboration and the collaborative meeting with the researcher.

Participation in this study may give a practical and emotional burden. The collaborative meeting is part of regular medical care, but completing the questionnaire and potentially participating in an interview takes time. Participation may be emotionally challenging for parents, as it involves reflecting on experiences during their child’s illness. However, previous research has shown that sharing these experiences can also be helpful for parents. Therefore, the burden of participating in this study is expected to be minimal.

In order to participate in a study please refer to your/your child’s doctor.

Last reviewed

October 9, 2025

The above information is intended as a brief summary only and may not reflect the most up-to-date information. For full details and the current status of a protocol, physicians can contact the Princess Máxima Center directly.