PhD Defence Liesbeth Geuze

Supervisor and co-supervisor: Prof. Anne Goossensen (UvH) Dr. Sam Schrevel (LUMC).

Summary

This thesis explores the implications of insider perspectives of parents caring for children with profound intellectual and multiple disabilities (PIMD) at home for providing good care and support. The research examines parents’ (lived) experiences through a literature review, parents’ blogs, and interviews with parents. The phenomenological interviews are analysed with different lenses. During the course of the research, Wonder Labs are organised with blended groups of parents, healthcare professionals, and students to foster a better mutual understanding of different frames of reference and underlying values. Therefore, a fourth sub-study includes interviews with Wonder Lab participants.

The thesis employs several concepts, such as resilience and ‘social imaginaries’, to clarify parents’ insider perspectives. The parents face enormous challenges where they struggle to keep or regain balance under high pressure. The idea of ‘recreating habitat’ emerged to explain the consequences for innovating care and support. Understanding day-to-day family life as a habitat highlights the importance of recognising the dynamic and sensitive balance of interacting influences. The thesis discusses the implications at the macro, meso, and micro levels of care practices within this orientation.