Burden and quality of life of mothers of children and adolescents with chronic illnesses: an integrative review

Abstract

Objective: to identify and analyze the evidence available regarding evaluation of burden and quality of life of mothers who are caregivers for children and adolescents with chronic illnesses. Method: an integrative review, undertaken in the electronic sources MEDLINE; Academic Search Premier; CINAHL; LILACS; SciELO and PubMed, between 2010 and 2014. Results: among the 22 documents selected, there was a predominance of convenience samples and non-experimental transversal designs, at the levels IV and III2. The caregiver burden scales used were the Zarit Burden Interview and Montgomery-Borgatta Caregiver Burden Scale-Revised along with the following instruments for evaluating quality of life: The World Health Organization Quality of Life-BREF Scale; Self-report questionnaires; The Ulm Quality of Life Inventory for Parents of chronically ill children; Asthma Caregiver Quality of Life Questionnaire; and the Nottingham Health Profile. Quality-of-life appears to be influenced in a complex and interrelated way by the physical and mental health of the mothers who are caregivers, in accordance with their level of independence, social relationships, environment, and the extent to which they see themselves as burdened. Conclusion: the revealing of the results for the evaluation of burden and quality of life of mothers who are caregivers has implications for the planning and implementation of effective interventions, by the multidisciplinary team, if they are to relieve the burden.

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

“…In our study, 81% of the mothers did not have paid work, and were dedicated exclusively to child care and other activities of home and family. These data are similar to other studies (Figueiredo et al, 2016;Macedo et al, 2015;Rofail et al, 2013;Valença et al, 2012). The lack of a support system for caregivers who need to give up paid work in order to care for the child is one of the health system's weaknesses (Neves, Pietrovski, & Claudino, 2015) and is still a neglected topic.…”

“…Children with myelomeningocele were cared for by their mothers, corroborating the literature documenting that mothers continue to be the primary caregivers (Figueiredo et al, 2016;Macedo et al, 2015;Rofail et al, 2013;Valença et al, 2012). In a recent review, mothers were the primary caregivers (up to 100% in samples varying from 15 to 787 caregivers) (Macedo et al, 2015).…”

“…They are the informal caregivers. Sometimes the informal caregiver may have neither the formal knowledge for completing technical tasks (like urinary catheterization) nor psychological support (Macedo, da Silva, Paiva, & Ramos, 2015). Different areas of the caregivers' lives are affected by their caregiver role: social, psychological, and economic domains are radically changed (Rofail, Maguire, Kissner, Colligs, & Abetz-Webb, 2013).…”

My role and responsibility: mothers’ perspectives on overload in caring for children with cancer*

“…As important as the treatment of this pathology itself seen through the biomedical prism, there is also concern regarding the comprehensive care provided to these young hospitalized cancer patients and their families. The family is considered one of the supporting pillars for promoting well-being and assistance to these patients (2) . Cancer diagnosis in a child invades the family and triggers destabilization in multiple aspects of family life.…”

“…The concept of overload refers to objective aspects, since it involves concrete issues related to physical and mental conditions, and subjective aspects when it involves negative feelings induced in the caregiver by care providing activities (8) . Caregiver overload has been addressed in various contexts and population profiles such as in caring for a child with chronic sickness independent of the pathology, as well as in the psychiatric field (2,12) .…”