Children and adolescents with Type 1 Diabetes Mellitus - family dynamics and health-related quality of life after diabetes onset
Year: 2015
Type: dissertation
Study design: Clinical Trial
Abstract: ABSTRACT \n\nAim: The main aim of this thesis was to explore different aspects of family dynamics and health-\nrelated quality of life (HRQOL) after the onset of T1DM in children and adolescents. A second aim \nwas to evaluate the effects of a two-year prospective family intervention randomized controlled trial \n(RCT) with additional psychological support after the onset of T1DM, focusing on facilitating \ncommunication skills within the family in the initial and ongoing diabetes care. \n\nMethods: In Paper I, children and parents completed the Swedish versions of the PedsQL 4.0 and \nPedsQL 3.0 questionnaires measuring generic and diabetes-specific HRQOL, respectively. In Paper II, \n30 parents and eight siblings participated in focus group discussions and individual interviews about \ntheir preconceptions about diabetes, their reactions to the child’s diagnosis of T1DM, and its impact \non family relationships. Papers III and IV examined different aspects of the two-year family \nintervention study in which children aged 3–15 years, recently diagnosed with T1DM, participated \nwith their parents. In this RCT, two different treatment regimens at T1DM diagnosis were compared. \nThe treatment-as-usual regimen provided support from the whole diabetes team except for the specific \nsupport of a family psychologist-psychotherapist with special training in diabetes. Families in the \nintervention group were also provided with therapy focusing on improving communication. \n\nResults: In Paper I, the Total Score of the PedsQL 4.0 Generic Core Scales and the PedsQL 3.0 \nDiabetes Module exceeded the criterion for satisfactory internal consistency, for both child self-reports \nand parent proxy reports (a-values >0.88). In Paper II, fathers showed more uniform emotional and \nbehavioral patterns than mothers did. Among mothers, more distinct differences appeared, depending \non the age of the child with T1DM and the civil status of the mother. Siblings reported increased \ndemands on them in terms of greater responsibility and maturity. Reactions such as competition and \njealousy occurred at younger ages, whereas older siblings were more caring but also carried an \nincreased burden of worry. In Paper III, a higher education level in the father was associated with a \nlower HbA1c level in the child. Furthermore, in Paper IV, at 24 months the children and their fathers \nin the intervention group rated the child’s diabetes-specific HRQOL as significantly better and the \nchild’s worry as lower compared to the control group. Communication skills improved significantly \nover time in the intervention group. \n\nConclusion: The two-year prospective family intervention study showed promising results. The \nchildren in the intervention group showed several indications of improved generic and diabetes-\nspecific HRQOL. Actively involving both parents, not only immediately after T1DM onset but also \nduring two years of ongoing care, had a positive impact on the children’s and adolescents’ HRQOL. \n\nKeywords: health-related quality of life, children, adolescents, type 1 diabetes, families, parental \neducation, family intervention, glycemic control, family intervention.
Author: Peter Sand
Language: English
Subfield: Endocrinology, Diabetes and Metabolism
Field: Medicine
Domain: Health Sciences
Open Access status: green
Funder: Vardalinstitutet
OpenAlex ID: W1779307599