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.
Background: The pandemic of coronavirus disease 2019 (COVID-19) was undoubtedly a stressful experience for everyone. General opinion believed that children with acute or chronic illness could experience additional burden, but this is not confirmed. The aim of this study is to understand how children and adolescents already suffering from acute or chronic illness (e.g., cancer, cystic fibrosis, neuropsychiatric disorders) feel about the COVID-19 pandemic, and if the experience is significantly different between these children and children without illness. Methods: Children and adolescents affected by acute or chronic illness (named the “fragile group”) treated at the Regina Margherita Children Hospital in Italy, were enrolled in the study by filling a questionnaire about their pandemic experiences. Also, a group of children and adolescents without acute or chronic illness (named the “low-risk group”) recruited in the emergency department of the hospital, participated in the study in order to compare experiences. Results: The study group was composed of 166 children and adolescents (Median age = 12 yrs; 78% fragile group, 22% low-risk group). Participants experienced a general state of fear of the virus and of a potential infection for both themselves and their families, while feelings and thoughts that interfere with daily functioning were less frequent. The fragile group seems to be more resilient towards the pandemic situation than low-risk group and some differences on the basis of the type of illness were found in the fragile group. Conclusions: Dedicated psychosocial intervention must be proposed in order to support fragile children and adolescents’ well-being during the pandemic, also on the basis of their clinical and mental history.
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