Page 117 - Let them speak Towards a patient reported outcome measure set for

PROs emerging from focus groups and interviews
“Numerous activities revolve around children, yet when a
40-year-old man is not coming out of his apartment, people tend
to care less.” [Focus group 2 – January 12, 2023]
Other
Impact on the family was also reported as an important topic for
discussion. They pointed out that family members adjust to the child
with (G)ID, sometimes resulting in challenging family dynamics. Parents
often experience fatigue, struggle to accept their child’s condition and its
consequences, feel a sense of helplessness, endure a constant state of
mourning, perceive a lack of understanding from others, and persistently
worry about their child’s future.
“I believe that the greatest impact of (G)ID is on the family.
Therefore, we always need to consider how to support the
family.” [Focus group 9 – May 30, 2023]
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