Factors predicting distress among parents/caregivers of children with neurological disease and home enteral nutrition

Abstract

Background & aims. Caregivers of children with chronic diseases included in a home enteral nutrition (HEN) program are at risk of experiencing a feeling of burden, high level of anxiety and psychological distress. The aims of this study were: Firstly, to examine the prevalence of symptoms of anxiety-depression in caregivers of children with neurological diseases requiring HEN by gastrostomy tube (GT); secondly, to compare the characteristics of caregivers with high or low risk of exhibiting symptoms of anxiety-depression; thirdly, to investigate possible associations to child disease severity and nutrition support mode. Methods. 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. Results. All primary caregivers were mothers. Fifty-three percent 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 socioeconomic 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. Conclusions. 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.

Feeding Methods at Discharge Predict Long-Term Feeding and Neurodevelopmental Outcomes in Preterm Infants Referred for Gastrostomy Evaluation

“…(24, 25) Using an individualized approach, 40% of the complex infants referred with aerodigestive and severe FD ultimately needed a g-tube. Thus, patient-focused feeding programs may enhance decision-making and reduce economic and societal burden.…”

“…The interval between g-tube insertion and discharge is variable and dependent on parent comfort with handling the g-tube. (24, 25) The exact volume, and number of PO feeding attempts in the g-tube categories were not well recorded. We do not have accurate records of dose, volume, duration, or additional nutritional supplements to these infants during infancy.…”

A Core Outcome Set for Children With Feeding Tubes and Neurologic Impairment: A Systematic Review

“…The overall rate of disagreement was low; a third reviewer was requested for <5% of the screened articles. The majority of these articles (78%) were cohort studies, 5 23,44,53,65,71,74,80,81,83 systematic reviews (5%), 7,49,89,96,97 and controlled trials (5%). 22,28,48,55,91 The 5 systematic reviews performed analyses on 0 to 25 articles each.…”

Carga de la enfermedad crónica para los sujetos implicados en el cuidado

“…En las condiciones propias, el ser mujer [28], el no haber tenido la opción de decidir cuidar o no a su receptor [27,40], el convivir con este, el tener baja salud mental y el dedicar mucho tiempo y esfuerzo al cuidado [41,42] predisponen la presencia de carga. En las condiciones del receptor de cuidados, se ha observado que la carga se presenta acompañada de depresión, ansiedad, aislamiento, bajo optimismo y se aumenta cuando se cuida a una persona con enfermedad avanzada [27]; cuando se asumen terapéuticas invasivas y complejas [43], cuando se cuida a un niño [44,45], cuando aumenta la inestabilidad de la patología [25], cuando aumenta la dependencia del paciente [28][29][30] y cuando no se cuenta con apoyo social [46], situaciones todas que hacen que haya menor calidad de vida en el cuidador [47,48]. Para los profesionales de salud la carga como esfuerzo psicosocial tiene dos sentidos: el primero, en términos de lo que significa para una persona y su familia la vivencia de la ecnt y el segundo, lo que representa para el mismo profesional de la salud.…”