A life worth sharing: Understanding quality of life of persons with profound intellectual and multiple disabilities

We conducted a qualitative study, in which we explored Quality of Life (QoL) of persons with profound, intellectual and multiple disabilities (PIMD).
In this study, we interviewed 7 physicians, 11 professional caregivers, 5 mothers and conducted focus groups with the parents of 16 children and adults with PIMD. We analyzed the data thematically.
Based on our findings, we clustered the elements of QoL in four groups: emotional, physical, relational elements and “capability to influence the environment”. Furthermore, we found that assessment of good and poor QoL is always linked to the history of the unique individual. Therefore, good or poor QoL of persons with PIMD cannot be described in general terms.
Physicians reported on a positive influence of relationships on the QoL of persons with PIMD, especially emphasizing the importance of parent-child relationships. In addition, professional caregivers emphasized the dependency of persons with PIMD on them to reach (good) QoL. Parents underscored the importance of relations for their child’s QoL. Moreover, they were convinced that the ability to assess their child’s QoL required a longstanding relationship with their child.
Our studies revealed that long-term relationships of good quality are both a prerequisite for good QoL and for assessing QoL of persons with PIMD. This acknowledges how important persons living or working with persons with PIMD are for those with PIMD, and vice versa.