Association between functional independence of children with myelomeningocele and the burden of informal caregiving

• Grant number: 14/26225-1
• Support Opportunities: Scholarships in Brazil - Scientific Initiation
• Start date: April 01, 2015
• End date: March 31, 2016
• Field of knowledge: Health Sciences - Nursing - Medical-Surgical Nursing
• Principal Investigator: Marla Andréia Garcia de Avila
• Grantee: Karen Negrão Cavalari
• Host Institution: Faculdade de Medicina (FMB). Universidade Estadual Paulista (UNESP). Campus de Botucatu. Botucatu , SP, Brazil

Abstract

Association between functional independence of children with myelomeningocele and the burden of informal caregivingChildren with myelomeningocele have a chronic condition and may undergo different surgical procedures throughout their lives. As a consequence, the family may experience fragility and require restructuring to meet the child's basic needs, which may vary according to the neuro-motor impairment involved. Even though the entire family is affected, one member, usually the mother, called the family or informal caregiver, assumes the responsibility to provide care, regardless of technical and/or emotional preparation. Qualifying informal caregivers to provide such care is an action that may favor the child's functional independence and consequently minimize stress among caregivers. This study's aim is to verify the association between the functional independence of children after late spinal dysraphism correction (myelomeningocele) and stress among informal caregivers. This cross-sectional study will be conducted in a child neurosurgery clinic of a university hospital. Informal caregivers of children, who are between six months and seven-and-a-half years old, in the postoperative of spinal dysraphism due to myelomeningocele, will be included. To be considered an informal caregiver, participants have to be the main caregivers and not receive any payment for the activity. The following instruments will be used: Pediatric Evaluation of Disabilit Inventory - PEDI (Informal Caregiver Part II) and Caregiver Burden Scale - CBScale. According to the statistical analysis, 41 caregivers will be needed, considering that the time (hours per day) spent with the child is a potential confounding factor. This study can support guidance protocols to improve the quality of life of both caregivers and children.

Scientific publications

(References retrieved automatically from Web of Science and SciELO through information on FAPESP grants and their corresponding numbers as mentioned in the publications by the authors)

CAVALARI, KAREN NEGRAO; HAMAMOTO FILHO, PEDRO TADAO; CALDEIRA, SILVIA MARIA; DE CARVALHO NUNES, HELIO RUBENS; ALVES LIMA, FERNANDA MARIA; GARCIA DE AVILA, MARLA ANDREIA. Functional Independence of Children With Myelomeningocele: Is It Associated With the Informal Caregivers' Burden?. JOURNAL OF PEDIATRIC NURSING-NURSING CARE OF CHILDREN & FAMILIES, v. 36, p. 232-235, SEP-OCT 2017. (14/26225-1)