Disease burden
weight loss, fever, pain
DISEASE, SAID, SECONDARY
The disease burden experienced by parents influenced their expectations of GPs. Burden comprised the duration and severity of symptoms, the presence of additional symptoms (eg, weight loss), the impact on everyday life and the degree of concern about the symptoms (Mother (M8): ‘For one year he was pain free and … during the last couple of months it returned. He has lost … weight, and the pain is limiting him in daily life … and in school. He arrived late to school because his belly hurt and he had to go to the toilet again. So, I just wanted further investigation.’Most parents with a low disease burden emphasised that they had no specific expectations of the GP.Mother (M6): ‘Yes, exactly [the GP fulfilled my expectations]. Because it was not a severe situation, I did not have high expectations. I did not have a tense feeling,… so… GPs can help just by being friendly.’Parents had higher expectations with higher disease burdens, typically expressing concern that ‘something must be wrong’. This often resulted in questions about the cause of symptoms and expectations for the GP to label symptoms, conduct further investigations, or refer to secondary care.Father (F1): ‘At some point you are fed up… you want to know the answer, where it could come from? I know that my symptoms are clearly due to stress and everything, but I do not think that is the case for [my daughter].’’Mother (M3): ‘And then I said ‘You did not find anything but I would like it to be further investigated because 1) she is losing weight and 2) she just has an awful lot of pain attacks while turning pale, feeling bad, and not eating’. Her stool is almost never normal, so that cannot be right. But then, I got the response ‘What investigations were you thinking of?’… I am no doctor! So… I said… ‘Just send me to a paediatrician’… ‘There must be a cause for this, this cannot be right’.’Concern about symptoms varied among the parents. A couple of parents expressed concern over additional symptoms (eg, fever), while others worried about the impact of symptoms on everyday life (eg, school absenteeism and disturbed sleep) or the lack of explanation. By contrast, a few parents emphasised that they usually do not worry easily about their child’s health and did not in this case.Although both children mentioned that their symptoms affected them negatively during school and that they hoped the GP could find the cause and a solution, their parents had taken the initiative to consult the GP in both cases.