Kwetsbaarheid én kracht in gezinnen met een zorgintensief kind. Zoeken naar goede balans in complexe alledaagse gezinslevens door samenwerking vanuit zorg, (proto)professionaliteit en (ongevraagde) vriendschap

This collaborative and innovative practice-based research focuses on good care for families with a child with (very) severe intellectual and/or multiple disabilities. Due to the specific 24/7 care, these families often have to collaborate with care professionals from the birth of a care-intensive child and have to relate to care providers/systems. At times parents feel that they are not taken seriously, recognized and understood; for care professionals it is often a constant search for how 'close' they can and may come. Family life also becomes more complex because both parents and their other children relate to each other in different ways because of the 24/7 care, for example with regard to dividing tasks. Parents may also begin to feel guilty about the little attention and care that goes to their other children. By exploring the lived experience of the everyday complexity of those families and of the complex (collaborative) relationships between all family members and care professionals, we aim to arrive at more (knowledge about) appropriate and sustainable forms of collaboration that take into account what each person involved needs to feel taken seriously, heard or understood - starting with family members.

To this end, we are conducting care ethic case research around 9 families with a care-intensive child, working collaboratively with family members as well as care professionals over 18 months, and using ethnographic and phenomenological methods in data collection and analysis (Bos, et al. 2019; Cook, 2006; Finlay, 2014, Smaling, 2008, Leget et al. 2017)