Factors predicting distress among parents/caregivers of children with neurological disease and home enteral nutrition
- As the corresponding author, I certify that all co-authors have actively participated in the design and development of this study, data analysis and interpretation, article drafting and revision and have approved the final version.
- This manuscript is an original contribution not previously published, is not currently under consideration for publication elsewhere, has ethical adherence in all aspects and its authors have no conflicts of interest.
- The specific contribution of each author has been the following: C. Pedrón-Giner was responsible for study design, data collection, data analysis and preparation of manuscript. C. Calderón and C. Martínez-Costa were involved in study design, data collection, data analysis and preparation of manuscript. S. Borraz Gracia advised on patient recruitment and data interpretation, and revised the manuscript. L. Gómez-López was implicated in study design, data interpretation and manuscript revision.
Background & aims
Caregivers of children with chronic diseases included in a home enteral nutrition (HEN) programme are at risk of experiencing a feeling of burden, high level of anxiety and psychological distress. The aims of this study were: first, to examine the prevalence of symptoms of anxiety–depression in caregivers of children with neurological diseases requiring HEN by gastrostomy tube (GT); second, to compare the characteristics of caregivers with high or low risk of exhibiting symptoms of anxiety–depression; and third, to investigate possible associations to child disease severity and nutrition support mode.
A cross-sectional observational study was performed in 58 caregivers of children (31 boys, aged 0.3–18 years) with neurological diseases and GT feeding. The characteristics of caregivers with high or low risk of presenting symptoms of anxiety–depression were compared regarding the following variables: socio-demographic characteristics, the primary caregiver's intrapsychic factors, anthropometric parameters of the child, length of HEN, type of nutrients delivered by GT and infusion regime.
All primary caregivers were mothers. Fifty-three per cent of them showed high risk of exhibiting symptoms of anxiety–depression. Mothers with high or low risk of presenting symptoms of anxiety–depression were comparable in age and family socio-economic status. They were also similar in terms of age, anthropometric conditions and length of HEN in their children.No differences were found between the two groups of mothers according to the level of the child's motor function impairment, type of nutrients delivered by GT and infusion regime. Higher levels of psychological distress and perception of burden overload were found in mothers with high risk of exhibiting symptoms of anxiety–depression.
This study found a high prevalence of symptoms of anxiety–depression, perception of burden overload and psychological distress in caregivers of children with HEN. Thus, greater practical and emotional support is required for these families.