Studying Care Transitions from the Perspective of Older Adults and Their Carers – First Impressions from the BUILD Qualitative Longitudinal Study

Qualitative Interviews

BUILD aims at building ecosystems of integrated care through a participatory and community engagement approach – understanding older adults not just as passive recipients of care, but as active agents in shaping integrated care solutions on an everyday basis. To grasp these everyday practices of integrated care, WP2 of BUILD conducts a qualitative, longitudinal study that involves care triads (older adults in need of care, family carers and formal caregivers) in three waves of qualitative interviews.

We interview people across Austria, Czech Republic, Denmark and Portugal, and follow up with them twice over the course of eleven months. To date, we have conducted 53 interviews with older adults and 49 with their caregivers across the four participating countries. These interviews give insights into how (integrated) care is practically organized in everyday life, which challenges arise as people move from one care situation to another and how these care transitions are shaped by the unequal distribution of risks and resources.

As one example of the challenges experienced in and through care transitions, we now share one case from an Austrian interview: Peter (name changed for publication purposes), who is a 89-year old man from Austria living with dementia. In his interview, Peter focusses on one care transition that was particularly hard for him – losing his car and with that, his ability to drive.

In her interview, his daughter – highly involved in the care for her father – highlights that the loss of his car was only partly due to medical concerns of doctors, but more based on a decision she made independently out of concern for her father’s safety: “With the excuse that we partly need the car. He can accept that quite well. (…) I just have a bad feeling. (…) I don’t know, when he drives somewhere now, whether he will make it back home again.”  Peter, on the other hand, is well aware that it was indeed his daughter who made the decision, instead of doctors or medical personnel: “Yes, the children have taken the car into safekeeping.”

Even though this example might seem mundane, it gives an insight into how transitions in care (e.g. transitions from mobility to immobility, or from autonomy to dependency) are not always determined by deteriorating health in later life, but embedded into complex social systems, interactions and the distribution of responsibilities between individuals, families and the health care sector. Doctors and medical staff – usually the ones expected to make the important decisions about health care – did not give the daughter enough information and reassurance whether her father was still able to drive. As a consequence, she described intense caregiver burden from having to make hard decisions on behalf of her father: “There’s absolutely no statement [from doctors] about that. As a family carer, I find that a real pity, because I’m always the one holding the short straw.”

Peter’s case illustrates how integrating care systems is not just an institutional framework or policy challenge – it remains on the people involved in complex care networks to shape integrated care ecosystems in everyday life. In the BUILD project, we remain committed to asking which support older adults and their caregivers need in order to be able to successfully integrate care and manage care transitions in everyday life.

Authors: Julia Birke & Vera Gallistl (Karl Landsteiner University of Health Sciences)