Parent perspectives on the assessment of quality of life of their children with profound intellectual and multiple disabilities in the Netherlands.
Parents of children with profound ID believe only trusted insiders—ideally parents—should judge quality of life.
01Research in Context
What this study did
Vassos et al. (2023) asked Dutch parents of children with profound intellectual and multiple disabilities how quality of life should be judged.
The team ran open interviews. Parents shared who they trust to read their child’s subtle cues.
What they found
Parents said only people who know the child well can spot tiny signs of joy or pain.
They picked family members, not paid staff, to give the most accurate picture.
How this fits with other research
Schertz et al. (2016) saw the same need for trust in end-of-life talks with doctors. Both studies show parents want long bonds before sharing big choices.
Heras et al. (2021) built a teacher-friendly QoL checklist, but the new paper warns outsiders may miss signs. The tools can coexist: teachers track class skills, parents track inner well-being.
Jalili et al. (2024) found that when bosses trust staff, families later report better QoL services. Together these works say trust is the glue at every level—parent-child, staff-supervisor, family-agency.
Why it matters
If you write QoL goals or send questionnaires, ask who fills them out. Parents in this study want first say. Keep forms short and let caregivers add notes so subtle signals are not lost.
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02At a glance
03Original abstract
BACKGROUND: Assessing Quality of Life (QoL) of persons with profound intellectual and multiple disabilities (PIMD) is challenging, yet QoL plays an important role in medical decision-making processes concerning persons with PIMD. The perspectives of parents of children with PIMD on the assessment of their QoL have not been studied. AIM: To explore the perspectives of parents on the assessment of QoL of their children. METHODS: We conducted a qualitative study, forming three focus groups with 22 parents of children with PIMD to explore their views on what is necessary to assess QoL of their children and subsequently, who is best suited to assess QoL. RESULTS: Parents describe a long-term relationship of the assessor with family (child and parents), with trust as an important aspect, as a requirement to assess QoL. Parents consider family members, preferably the parents themselves as the best assessors of QoL, followed by siblings. Professional caregivers, mostly mentioned by name, are considered the next alternative. Most parents thought that physicians do not know the child well enough to assess their QoL. CONCLUSIONS: In conclusion, the parents of children with PIMD in our study consider trust and a long-term relationship essential for assessing QoL.
Research in developmental disabilities, 2023 · doi:10.1016/j.ridd.2023.104536