Children with Type 1 diabetes The initial education process and the impact on children and their parents over the first two years

Research output: ThesisDoctoral Thesis (compilation)

Abstract

The overall aim of this thesis was to investigate the initial diabetes education process, the impact on children and their parents and parental satisfaction with the care received one and two years subsequent to the child’s diagnosis. In order to seek a deeper understanding for how the diabetes team’s initial education process works from admission to discharge among families with a child newly diagnosed with type 1 diabetes, three diabetes teams from three different paediatric hospitals, two county hospitals and one university hospital were interviewed through focus groups interviews (Paper I). In Paper II, 10 mothers and 8 fathers were individually interviewed to describe their perceptions of the initial diabetes educational process when their child was diagnosed with type 1 diabetes. A qualitative method was used and the interviews were analysed with two different types of content analysis, inductive and deductive. In order to describe and compare the disease impact on parents and children respectively, data were collected focusing parents’ HRQOL one and two years subsequent to the child’s diagnosis (Paper III and IV) and children’s experiences of diabetes-specific HRQOL (Paper III), children’s experiences of diabetes-specific family support (Paper IV) and parents’ satisfaction with the care received (Paper III and IV).
The results of the interviews showed that the goal for the diabetes education is to achieve self-care for the child and their parents. The education is aimed to guide the child and parents towards self-help whereby the diabetes team immediately after the child’s diagnosis provides the child and their parents with knowledge and skills about the disease and how to manage the child’s treatment. Furthermore, the diabetes team tries to get an overall picture on each family by focusing on their daily life before the child was diagnosed with type 1 diabetes in order to optimize the new situation for the family. Parents experienced that the educational process was overall satisfactory. However, they wanted the education to be more adapted to each individual family to help them in their everyday life. They described the education process as almost a type of knowledge overload according to a rigid schedule and that there was no time for feeling grief and sadness. Parents felt that it was a difficult task to manage the child’s disease and at the same time continue their normal family life.
The results from Paper III and IV showed that both parents’ HRQOL were affected at diagnosis and one and two years subsequent to their child’s diagnosis. The results also showed that mothers were especially emotionally affected during the first two years after the child’s diagnosis and they also had a higher degree of worry than fathers. Both children between 5-7 years and their parents estimated a higher degree of worry after one year than the children between 8-18 years and their respective parents did. After two years there was no relationship between how children experienced parental support and their HbA1c value. Parents were overall satisfied with their child’s healthcare both at diagnosis and one and two years subsequent to the child’s diagnosis.
The findings from this thesis can elucidate the understanding of how it is to live with type 1 diabetes from the both the child’s and their parent’s perspective the first years subsequent to the child’s diagnosis. By reflecting on the findings, the diabetes teams may more clearly increase the focus on each family’s individual needs at diagnosis to further develop the education process to be more adapted to the individual family and thereby promote the transition to home. To further elucidate the disease effects on parents, and especially mothers, longitudinal interview studies need to be carried out with both mothers and fathers. Furthermore, it is also important to highlight children's experiences from their perspectives as well as their siblings.

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Subject classification (UKÄ) – MANDATORY

  • Health Sciences
Original languageEnglish
QualificationDoctor
Awarding Institution
Supervisors/Assistant supervisor
Award date2014 May 15
Publisher
  • Department of Health Sciences, Lund University
Print ISBNs978-91-87651-82-3
Publication statusPublished - 2014
Publication categoryResearch

Bibliographic note

Defence details Date: 2014-05-15 Time: 13:00 Place: SSSH-salen, Health Sciences Centre, Institutionen för Hälsovetenskaper, Lund External reviewer(s) Name: Hall, Elisabeth Title: Professor emeritus Affiliation: Afdeling for Public Health, Aarhus universitet ---

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