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Parent's perception of their children's health, quality of life and burden of diabetes: testing reliability and validity of 'Check your Health' by proxy.
Karolinska institutet.ORCID iD: 0000-0002-8136-6340
2017 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 31, no 3, p. 497-504Article in journal (Refereed) Published
Abstract [en]

AIM: To test the validity and reliability of the 'Check your Health by proxy' instrument in parents to children with diabetes aged 8-17 years.

METHODS: One hundred and ninety-one caregivers and their children, aged 8-17 years, were included. All completed the 'Check your Health' questionnaire measuring quality of life and burden of diabetes, DISABKIDS self- or proxy version, and 45 completed the same questionnaires 2 weeks later.

RESULTS: Test-retest reliability on the 'Check your Health' questionnaire by proxy was moderate to strong (r = 0.48-0.74), p < 0.002). Convergent validity was weak to moderate (r = 0.15-0.49, p < 0.05). The instrument showed acceptable discriminant validity. Parents reported lower scores than the children on emotional health and social relations and higher scores on physical and emotional burden and higher burden on quality of life. Poorer social relationships and quality of life were associated with higher reported disease severity. The diabetes burden domain of the questionnaire correlated to perceived severity of diabetes and to perceived health. Discriminant validity showed that poorer social relationships and quality of life were associated with higher severity of the disease. The diabetes burden domain of 'Check your Health' by proxy showed discriminant validity on perceived severity of diabetes.

CONCLUSIONS: The instrument 'Check your Health' by proxy showed acceptable psychometric characteristics in parents to young people (8-17 years of age) with diabetes. We also concluded that parents reported that their children had lower health and higher burden of diabetes than the children did, and it correlated to reported disease severity.

Place, publisher, year, edition, pages
2017. Vol. 31, no 3, p. 497-504
Keywords [en]
burden of diabetes, parents, perceived health, quality of life, type 1 diabetes
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:du-27246DOI: 10.1111/scs.12362PubMedID: 27440173OAI: oai:DiVA.org:du-27246DiVA, id: diva2:1188705
Available from: 2018-03-08 Created: 2018-03-08 Last updated: 2018-03-28Bibliographically approved
In thesis
1. Diabetes during childhood and adolescence: studies of insulin treatment, patient-reported outcomes, and evaluation of an empowerment-based education
Open this publication in new window or tab >>Diabetes during childhood and adolescence: studies of insulin treatment, patient-reported outcomes, and evaluation of an empowerment-based education
2017 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

There is a lack of studies demonstrating positive effects on glycaemic control and HRQoL in children and adolescents starting CSII treatment. Guidelines recommend measuring perceived HRQoL routinely. It is important to have questionnaires, not overly comprehensive or timeconsuming, to measure HRQoL in children and adolescents as well as their parents. Structured and person-centred education has been emphasized as a key to successful selfmanagement. Guided Self-Determination-Young (GSD-Y) is a person-centred communication and reflection method. The overall aim of this thesis was to increase the knowledge regarding glycaemic control, type of treatment, HRQoL, and a theory-based education among youth with type 1 diabetes.

Study I was a retrospective case-control study comparing children and adolescents starting CSII (n=216), with a control group treated with MDI (n=215). Children and adolescents who had started CSII showed improvement in glycaemic control, measured as HbA1c, during the first six months. For boys, this improvement could be identified throughout the first year.

In Study II, 197 parents and their children with type 1 diabetes completed the proxy and child versions of the questionnaires Check your Health and DISABKIDS to test the psychometric properties of Check your Health by proxy. The test of the reliability and validity of this questionnaire showed acceptable psychometric properties.

Study III, an RCT evaluating a GSD-Y education, included 71 adolescents starting CSII and their parents. The intervention group (n=37) attended seven group education sessions, lasting for about two hours each, using the GSD-Y method. The participants were followed for six months. The GSD-Y method showed a positive effect on glycaemic control, especially for participants with an HbA1c above 63 mmol/mol (n=48) at inclusion (p= 0.037); furthermore, readiness to change increased (p=0.037). A correlation was identified between HbA1c and goal achievement (rs=-0.475, p=0.001), and readiness to change (rs=-0.487, p=0.001).

In Study IV, 13 adolescents were interviewed after the intervention with GSD-Y. From the qualitative analysis, two categories emerged: the importance of context, and growing in power through the group process. An overarching theme that emerged from the interviews was the importance of expert and referent power in growing awareness of the importance of self-management, as well as mitigating the loneliness of diabetes. Further, the findings showed that it is valuable for adolescents to meet other young people in the same situation, and to share their experiences from living with diabetes.

In conclusion the four studies showed, treatment with CSII may initially result in improved HbA1c. Group education with the GSD-Y method, for adolescents and their parents, has the potential to further improve HbA1c, mitigate the loneliness of diabetes, and contribute to conscious reflection about self-management. The Check your Health questionnaire by proxy has shown acceptable psychometric characteristics, and may be useful in both studies and clinical settings.

Place, publisher, year, edition, pages
Stockholm: Karolinska Institutet, Dept of Women's and Children's Health, 2017
National Category
Health Sciences
Identifiers
urn:nbn:se:du-27436 (URN)978-91-7676-778-8 (ISBN)
Available from: 2018-03-28 Created: 2018-03-28 Last updated: 2018-03-28Bibliographically approved

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Brorsson, Anna Lena

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