Page 118 - Let them speak Towards a patient reported outcome measure set for

Chapter 5
Table 2. Main themes emerging from the focus groups and interviews.
Part 1 – Impact of (G)ID
Positive impact Citations
Physical- -
Mental Positive attitude, cheerful mood,
easily content, perseverance1
,
sensitive1, empathic1, mindful1
Social Easily connecting with others,
close relationships, reliable1
,
non-judgmental1
Other Social support, expectation
management and adjustment
environment, activities for
individuals with ID1, impact on
family1 , ambulatory care1
“I have always remained positive”, “X is always
happy in the morning”, “With three blocks she
is overjoyed”, “Despite a non-stable start, I
managed to make it this far”, “X senses very well
if someone means something well or not”, “They
always know if you are sad or happy”, “X lives in
the moment”
“He just chats with everyone”, “They can have
strong connections with people”, “She always
keeps her word”, “She only cares if someone is
nice, she does not see their disability”
“I have a huge social network around me”,
“The environment looks at what is feasible”,
“He is in athletics specifically for people with
ID”, “Siblings can become much more caring
towards others as they grow up”, “Ambulatory
care is available for the individual and family”
Negative impact Citations
Physical Fatigue, pain, activities,
mobility, sleep, hypotonia,
epilepsy, respiratory symptoms,
vision and hearing problems,
gastrointestinal symptoms,
self-care, sexual functioning,
length and weight, chewing and
swallowing1, dental problems1
,
tumor growth1
“I am always tired during the day”, “I am never
completely pain free”, “I cannot run much”,
“He has no good balance”, “They often wake
up at night”, “Standing or sitting upright takes
a lot of energy”, “She has small absences”,
“She has astma”, “X has impaired hearing and
vision”, “She suffers from reflux”, “He needs
24-hour care”, “Hypersexuality”, “Some children
are bedridden so they grow less well”, “X has
swallowing problems”, “We see many dental
problems”, “Risk of tumor growth’
Menstruation1, STIs1, immune
problems1, heart problems1
,
kidney problems1, respiratory
infections1
“Menstruation”, “Sexually transmitted diseases”,
etc.
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