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Table 3 Illustration of coding

From: The participatory development of a national core set of person-centred diabetes outcome constructs for use in routine diabetes care across healthcare sectors

Outcome category Examples of individual quotes (sample codes) Examples of group session results/moderator notes. (sample codes)
Physical impact “I have some problems which I think really many of us somewhat old men with diabetes have, that is sexual problems—it is in reality the thing that worries me the most—that I am most sad about in my situation.”
(Symptom distress- sexual dysfunction)
“Focus on being asked about sexual function by hospital and general practitioner” (Symptom distress—sexual dysfunction)
“nocturnal hypoglycemia causes poor sleep and tiredness”
(symptom distress—sleep, impact of hypoglycemia)
Psychological impact “Risk of complications affect me a lot. I worry if I will get them. I don’t think I actually will, but, in any case, I worry about it. The worry is there all the time” (diabetes stress—worry about complications) “It’s experienced as a big part of life to always have to plan—it’s a challenge to never have a day off (treatment burden—constant demand)
Social impact “It affects me a lot that when I am with other people that I always have to have my gear close to me. I have a pump and the bag always has to be close to me. I can’t just let it be and it affects me all the time.” (social impact—impaired enjoyment) “Lack of understanding from others”
(social impact—lack of understanding)
“Feeling different. always having to explain oneself” to others
(social impact—impaired enjoyment)
Desired outcomes/goals to achieve “Feeling I got the handle on my carb intake, my insulin consumption and activity level (yesterday, today and tomorrow) without feeling that my life is controlled by numbers” “To get a more stable blood sugar”
(blood sugar regulation—stable blood sugar)
“Getting better sleep”
(symptom distress—sleep)
Disutility of treatment “Frustrating to have to make finger pricks several times daily and constantly think about my blood sugar levels and the insecurity that comes with it—and that my fingers are ruined”
(treatment burden—glucose measurement)
“Its difficult to always remember to have BG device, insulin, needles, and juice/food” (Treatment burden—glucose measurement/medication management)
“Always having to be on—Burn-out” (Diabetes related distress, treatment burden)
Requirements for achieving good long-term care results “The diabetes group course I went to was a tremendous success. It meant the world to me, but I know many PWD who have not attended one. You learn to regulate the three elements; Physical activity, eating and medicine.”
(Access—social-motivational support (community))
“PWD want better communication in care and in general language”
(Access—person-centred communication)
“Better diabetes know-how in primary care” (Access—quality care)
“relevant technology is not limited due to budget gaps/silo thinking”
(Access—needed technology)