Functional Independence of Children With Myelomeningocele: Is It Associated With the Informal Caregivers' Burden?

Abstract

The effect of functional independence of children with myelomeningocele may be balanced by the caregivers' resilience so that caregivers' burden is not dependent upon the child's independence.

Construction and Validation of Educational Material for Children with Hydrocephalus and Their Informal Caregivers

“…35 By occupation, 77.8% of the informal caregivers were unemployed and were fully dedicated to caring for their children with hydrocephalus, as similarly observed in other Brazilian studies. 36,37 As children with chronic disease need their mother's care, these women often quit their jobs and assume the exclusive role of caregivers. Consequently, the caregivers are often exposed to emotional exhaustion.…”

Seeking tirelessly for better health and life conditions for the child with myelomeningocele

“…Although a number of studies demonstrate the role of primary caregiver assigned to the mother (10,12,(33)(34) , this study showed, in a predominant manner, that in families where the father was present in the family nucleus, he also exercised the role of caregiver, sharing care and enhancing the family bond. The father's participation has been evidenced in the life and care of the child with special health needs through daily care, stimulating the bond and affection of the relationships between them (35)(36) ; caring for the child in a shared way improves family interactions (36)(37) .…”

“…Another aggravating fact which emerges is that mothers, when taking care of a child with a chronic condition, quit their jobs, due to the difficulty of the duality of the routine ( 8 , 33 ) . Giving up professional life was also a behavior observed in this study, where five mothers, feeling overwhelmed with the excess of functions attributed to the chronic disease, left their professional life.…”

“…The need to purchase supplies for care and support and mobility devices, when the supply of the public health service is insufficient, increases the financial burden, psychosocial issues and changes family functioning; this reality is also portrayed in other studies of families of children with MMC and other chronic health conditions (8,24) . Another aggravating fact which emerges is that mothers, when taking care of a child with a chronic condition, quit their jobs, due to the difficulty of the duality of the routine (8,33) . Giving up professional life was also a behavior observed in this study, where five mothers, feeling overwhelmed with the excess of functions attributed to the chronic disease, left their professional life.…”

Investigation of Factors Affecting Caregiver Burden and Functional Level of Children with Spina Bifida

“…6 Daha önceki çalışmalarda, SB'li çocuklarda fonksiyonellik ile bakıcı yükü arasındaki ilişki, ortopedik problemlerin bakıcı yükü üzerine etkisi ve ambulasyon seviyesi ile bakıcı yükü arasındaki ilişki incelenmiştir. 2,7 Çalışmamızda, daha geniş bir perspektiften bakarak SB'li çocuklarda lezyon seviyesi, ambulasyon düzeyi, ortopedik ve nörojenik mesanebağırsak gibi komplikasyonlar ile bakıcı yükü ve fonksiyonel durum arasındaki ilişkiyi incelemeyi amaçladık.…”