Care in Balance for Families with Severe Disabilities

The presence of a child with profound intellectual and multiple disabilities (PIMD) has a major impact on family life. Within the research group Technology for Healthcare, Liesbeth Geuze investigated how care and support for these families can be improved by closely aligning with the lived experiences of parents. Her PhD research has now been completed and has yielded valuable new insights into what families need to remain in balance.

Families with children with PIMD

Children with PIMD—estimated at around 2,000 in the Netherlands—have severe intellectual and motor impairments, for example as a result of degenerative conditions, genetic abnormalities, or brain injury. They usually communicate non-verbally, through sounds, body language, and facial expressions, and require lifelong, often palliative, care. This care may include respiratory care, epilepsy management, infection prevention, support with eating and drinking, mobility and positioning, and pain and comfort care. Many children with PIMD die at a young age, while at the same time a growing group reaches adulthood. In the Netherlands, many of these children live at home, where their parents provide care. Care typically involves a large network of healthcare professionals.

These parents constantly have to juggle multiple responsibilities and are continuously searching for balance while operating in survival mode. This has a major impact on family life. In addition to physical and mental overload, parents often experience uncertainty, grief, and (ongoing) loss. Organising appropriate care, support, and assistive devices also requires a great deal of time and energy.

Research

This PhD research took an in-depth look at how parents experience their lives and the care for their child, and how the healthcare system affects them. Through literature reviews, analysis of parents’ blogs, and in-depth interviews, the study mapped how parents cope with the vulnerability of their situation and with the complex healthcare landscape.

The research also examined how so-called Wonder Labs can contribute to greater mutual understanding between parents, healthcare professionals, and students as future care providers. In these sessions, parents’ experiential stories serve as the starting point for joint reflection on what good care means in practice.

A key outcome of the research is the concept of “(re)creating habitat.” Daily family life is viewed as a whole set of circumstances that must remain in balance. Care and support should therefore not focus solely on individual “care problems,” but on supporting the entire interplay of factors that determine whether a family can continue to function and flourish.

Within the Bachelor of Nursing programme at The Hague University of Applied Sciences, students were involved in assignments linked to the research, for example concerning parents performing medical procedures in the home setting and collaboration with healthcare professionals.

Collaborations and completion

The research was funded by the Netherlands Organisation for Scientific Research (NWO) and carried out in collaboration between the University of Humanistic Studies and The Hague University of Applied Sciences.

The project led to broader collaborations with, among others, the Knowledge Centre for Children’s Palliative Care, Vilans, and the PIMD Knowledge Centre. Within these collaborations, the Wonder Labs were established. This approach contributes to greater understanding, better alignment, and care that more closely matches the lived world of families.

Duration

The project ran until July 2024 and has been completed with the successful PhD defence of Liesbeth Geuze at the University of Humanistic Studies.

Future

The insights gained are being used in education, research, and the further development of care and support for families with a child with PIMD.

Contact

Liesbeth Geuze ([email protected])