Fathers involved in children with type 1 diabetes : finding the balance between disease control and health promotion

Sammanfattning: Background:Type I diabetes is a chronic disease that places great demands on the child and family. Parental involvement has been found to be essential for disease outcome. However, fathers’ involvement has been less studied, even though high paternal involvement has been correlated with less disease impact on the family and higher quality of life among adolescents.Aim: The overall aim of the study was to explore and analyze constructions of fathers’ involvement in their child’s everyday life with type 1 diabetes from an ecological and health promotion perspective. Four specific aims were applied: 1) explore and describe discourses in health care guidelines for children with type 1 diabetes in Nordic countries, focusing on parents' positioning (I), 2) analyze how Swedish pediatric diabetes teams perceived and discussed fathers’ involvement in the care of their child with type 1 diabetes, and to discuss how the teams’ attitudes toward the fathers’ involvement developed during a focus group process (II), 3) explore and discuss how fathers involved in caring for their child with type 1 diabetes experience support from their pediatric diabetes team in everyday life with their child (III), and 4) analyze how involved fathers to children with type 1 diabetes understand their involvement in their child’s daily life and to discuss their perceptions from a health promotion perspective (IV).Material and methods: A qualitative and inductive approach was applied. Data were collected and analyzed during 2010-2012. The sample consisted of three pediatric guidelines originating from Norway, Denmark and Sweden (I), three Swedish pediatric diabetes teams (PDTs) (II), and 11 (III) and 16 (IV) fathers of children with type 1 diabetes who scored high involvement on the Parental Responsibility Questionnaire. Data were collected through repeated focus group discussions with the PDTs (II), online focus group discussions (III) and individual interviews (III, IV) with the fathers. Three analysis methods were applied: analysis of discourses (I), Constructivist Grounded Theory (II, III) and content analysis (IV).Findings: The findings illuminated the complex interaction between the pediatric guidelines, the PDTs and the fathers. Fathers highly involved in their child’s daily life experienced different levels of tension between the general recommendations and their personal experiences of living with a child with type 1 diabetes (III). The fathers regarded their involvement in their child’s diabetes care as additional to their general parenting, and a fine balance was identified between a health promotion perspective and a controlling involvement. The common denominator between the highly involved fathers was their use of parental leave (IV). The PDTs initially perceived fathers’ involvement as gendered and balanced on the mother’s agement, but as focus was set on fathers’ engagement the PDTs increased their awareness of this and started to identify and encourage their engagement II). At the macro-level, parents’ voices were diminished in Nordic pediatric diabetes guidelines in favor of an expert discourse (I).Conclusions: Fathers’ involvement concerning a child with type 1diabetes is constructed in a complex way, based on an interaction between the fathers’ perceptions of their additional involvement and the support provided by the PDTs; the PDTs’ perceptions of the fathers’ involvement; and how parents/fathers are constructed in pediatric diabetes guidelines. In order to promote the health and well-being of children with type 1 diabetes, fathers’ involvement needs to be taken into account in the pediatric guidelines as well as in clinical practice.