Perspective of parents of children with type 1 diabetes on the future of their child: A qualitative study

Abstract

Background Type 1 diabetes mellitus (T1D) is one of the most common chronic diseases in children. Since the impact on both the child and its parents is great, parents are often concerned about their child's future. Objectives The primary aim of this study is to examine the life domains related to a child's future that generate concerns among parents of children with T1D mellitus and to identify the factors that influence these concerns. Methods A qualitative approach using semistructured interviews was used. Dutch-speaking parents of children with T1D were recruited on a voluntary basis at UZ Leuven. A total of 11 online interviews (15 parents) were conducted. The online interviews, recorded in audio format, were subsequently transcribed and analysed through coding. Results Mild to major concerns about independence were detected in 80% of parents. Three overarching themes were identified, each subdivided into specific subthemes, which account for the variability in the level of parental concern: diabetes-related factors, child-related factors and environmental influences. Within the theme of diabetes-related factors, concerns are explained by current metabolic control and coping, fear of hypoglycaemia and a sense of responsibility or control. The second factor influencing parental concerns is the child-specific characteristics, including the child's history, age/puberty and comorbidities. Lastly, relationships and role models in the environment, medical care and technological support are significant contributors. Conclusions This study is the first qualitative exploration of the perspective of parents of children with T1D regarding their child's future. Three major themes, along with different subthemes, were identified as influencing the level of parental concern related to their child's future independence. The findings aim to enhance healthcare providers' understanding of parental concerns.