Short time, few available resources and need for measuring the strain in parents of children with chronic diseases: Utility of the Family Strain Questionnaire, Short Pediatric Form

Abstract

Measuring caregivers’ strain due to chronic disease of childhood is an important complement of the quality of children’s care but it may imply resources not always available. Short questionnaires may then be useful, especially for clinical nurses and care-teams. In this study we present the Family Strain Questionnaire-Short Pediatric Form (FSQ-SPF), which is brief, easy to use, and does not require any specific psychological training. The questionnaire was administered to 96 parents of children affected by genetic/congenital or acquired diseases recruited at two pediatric hospitals. The psychometric properties were analyzed in the context of the requirements for scale construction of the Rasch model. The characteristics of the parents and their levels of strain were then estimated. The parents analyzed (n.96) showed to suffer from severe strain over time, which was independent of the severity of the child’s disability. This was particularly true for mothers with lower levels of education (i.e. one-third of the sample). Forty-four percent of these mothers experienced a difficult relationship with their partner. In general, more than 40% of the subjects declared economic difficulties, reduced social life and problems to move to hospital or for medical visits. The FSQ-SPF seems to be a useful and practical instrument for the evaluation of caregivers' strain in a pediatric/adolescent context. It provides an appropriate and brief screening test, helping to target interventions and improving the quality of care.