Diabetes in childhood: everyday burden and professional consequences for parents

Abstract

To investigate the burden and the financial and professional consequences for mothers and fathers after the onset of diabetes in their child in relationship to age at onset and family structure. All families of children with an age at onset < 14 years and a diabetes duration < 10 years treated at four large pediatric diabetes centers received a structured questionnaire (burden of diabetes, professional position and career development, financial consequences for both parents, demographic data). 580 families with 583 children with type 1 diabetes (46 % girls, diabetes duration 5.0 +/- 3.2 years, age at onset 6.9 +/- 3.9 years) participated. 42 % of the children had an age at onset below 6 years. 11 % had single parents. Before the onset of diabetes in their children 93 % of the fathers worked full-time, thereafter 4 % changed their employment. Mothers worked at onset full-time in 22 % and part-time in 38 %; thereafter 31 % reduced their working time or stopped working. 33 % of the mothers reported handicaps in their professional career development, especially those with a child with age at onset below 6 years (44 %). Negative financial consequences were present in 44 % of the families. The day to day burden on a scale from 1 to 5 decreased both in mothers and in fathers with increasing age at onset. The individual burden was higher in mothers (3.6 +/-1.1) than in fathers (2.8 +/- 1.1) (p = 0.000). Initiatives to reduce the burden on families with a child with diabetes are urgently needed. Particularly the social and professional integration of mothers with younger children at diabetes onset need to be improved through support measures outside the family.