Quality of life and burden of caregivers of children and adolescents with disabilities

Barros, Alina Lúcia Oliveira; Gutierrez, Gabriela Mancia de; Barros, Amanda Oliveira; Santos, Maria Teresa Botti Rodrigues

doi:10.1111/scd.12400

Cited by 57 publications

(70 citation statements)

References 26 publications

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“…Moreover, 58% of caregivers were illiterate. The predominance of women as caregivers corroborates the findings of previous studies [ 22 – 24 ] which can be explained by the tendency of women to carry out many roles, frequently including domestic work, employment, and caregiving to the family members [ 25 ]. The profiles of the caregivers in the study reveal the cultural tendency and tradition of rural communities in Egypt where participation of illiterate and non-working women in familial caregiving is preferred, especially those who have motherhood experience.…”

Section: Discussionsupporting

confidence: 88%

“…This could be attributed to the fact that better-educated caregivers would have more resources available to manage the care situation and those who had a paid job outside the house are not always available to provide full-time primary care. Caregiver age was associated with the physical burden which was supported by the previous finding which stated that older caregivers experience higher burden and greater impact on their quality of life [22,37]. However, in contrast with Zahid and Ohaeri [38] who found that spouse caregivers reported more burden than other caregivers, we found that being a parent for a disabled person was significantly associated with increased social dimension burden.…”

Section: Determinants Of Caregiver Burdensupporting

confidence: 83%

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Determinants of caregiver burden of persons with disabilities in a rural district in Egypt

et al. 2020

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Background: Family caregivers are critical partners in the plan of care of people with disabilities. The study aims to demonstrate the factor structure and internal consistency of the Caregiver Burden Inventory (CBI) among the studied caregivers of disabled persons and to determine the effects of patients' and caregivers' characteristics on the burden and its dimensions. Methods: A cross-sectional study among 260 family caregivers of disabled patients was carried out in a randomly chosen rural area, Minia, Egypt, 2019. Exploratory factor analysis (EFA) was conducted to determine the factorial validity of the CBI. Multiple linear regression was used to identify the significant factors affecting the burden. Results: Factor analysis resulted in a five-factor solution using 20 items (four for each dimension) accounting for 72.7% of the total variance. The CBI and its dimensions showed high internal consistency (Cronbach's alpha value > 0.70). Education of caregiver, family income, mental impairments, and mixed disabilities were significant predictors of total CBI burden. Conclusions: CBI is an effective multidimensional measure of the caregiver burden of disabled subjects. Caregivers experienced a distinct level of burden that is determined by caregiver and care recipient characteristics. Therefore, support and individualized counseling services should be optimized.

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Section: Discussionsupporting

confidence: 88%

Section: Determinants Of Caregiver Burdensupporting

confidence: 83%

Determinants of caregiver burden of persons with disabilities in a rural district in Egypt

et al. 2020

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“…Caring for children with disabilities is a greater burden on older mothers, which has a negative impact on the assessment of their QOL (28). In our study, we did not find a correlation between QOL and age, except that there is a positive and weak correlation (rho = 0.20) of older mothers and the environmental domain.…”

Section: Discussioncontrasting

confidence: 85%

Quality of life of mothers who have children with developmental disabilities

Mahmutović

Veladžić

Hadžiomerović

et al. 2020

JHSCI

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Introduction: The primary source of strength and support is the child’s family. A special role in caring for a child with developmental disabilities is played by his mother. The objective of this research is to find out the assessment of the quality of life (QOL) of disabled children mothers as well as to research the relation of sociodemographic variables of the respondents, as specified in this study and estimate the quality of their life and health.Methods: The cross-sectional study was performed by the use of the descriptive-analytical method. In a targeted association of families which have children and persons with difficulties was conducted this research on a sample of 100 registered mothers. The research instrument was the standardized questionnaire for QOL, the World Health Organization QOL-BREF and the users’ records of the mothers in the association.Results: The average age of the respondents was M = 48. 01 ± 11. 68. About 62% of the respondents are married, 54% have a high school diploma, 67% are not employed, 68% of the respondents did not declare to have health problems, and among those who declared to have health problems, the most common disease was diabetes mellitus. The average number of household members was M = 3. 44 members. The number of the household members was significantly and positively related to the domain of social interaction (rs = 0. 219; p < 0. 05), the domain of the environment (rs = 0. 220; p < 0. 05) and to the general QOL (rs = 0. 227; p < 0. 05). The age of the respondents was significantly and positivelyrelated only to the environmental domain (rs = 0. 205; p < 0. 05). The respondents who drive a car showed a significantly higher level of QOL in the field of mental health (p = 0. 042) and the environment (p = 0. 005). Concerning mothers with higher incomes rate, their QOL was better in the following domains: Physical health (p = 0. 030), mental health (p = 0. 002), environment (p = 0. 000001), and general QOL (p = 0. 0002).Conclusion: The respondents with a larger number of household members, those who have the support of family members, who were without health problems, and who independently use own car for transportation, consider their QOL as being better. Therefore, a promotional – preventive program for improving the life quality of mothers of children and persons with disabilities should include accessible life in the community and the ability to recognize the unique needs of the entire family of children and persons with disabilities.

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“…Caregivers' potentially lower standard of education prevents them from entering the skilled labor market. Thus, they dedicate themselves exclusively to household chores and taking care of the individual with CP [28]. Emerging concepts of quality of life related to CP are emerging, and in the last five years, a total of 469 articles were found in the literature.…”

Section: Discussionmentioning

confidence: 99%

Clinical and Inflammatory Factors Influencing Constipation and Quality of Life in Cerebral Palsy

Acf

Freire

et al. 2019

Preprint

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Introduction: Intestinal constipation is a clinical consequence, secondary to neuromotor disturbances, which acts on subjects with cerebral palsy (CP). The aim of this study was to investigate the factors influencing constipation and the quality of life (QOL) of CP subjects. Materials and methods: We recruited a total of 63 subjects aging from 5-17 years with spastic CP who received physical rehabilitation. The subjects were divided into two groups including with and without constipation. Subjects were assigned into one of the 4 groups (G1-4) based on the prevalence of 1) CP and 2) Constipation. Subjects were assigned as CP with constipation (G1), CP without constipation (G2), and controls without CP with constipation (G3) and without CP and without constipation (G4). Subject demographics, use of antiepileptic drugs (AEDs), motor function, caregiver priorities and child health index of life with disabilities (CPCHILD) were included. In addition to medical metadata, a subset of subjects was evaluated for oral and systemic inflammation through gingival bleeding and serum cytokine levels (TNF-alpha, IL-1 beta, IL-6, IL-8, IL-10) respectively. Statistical significance was evaluated by ANOVA One-Way (parametric data) and Kruskal Wallis (non-parametric data). Results: A significant relationship was found between the type of medication and constipation. Subjects taking GABA and GABA+ (GABA in association with other medication) were more likely to be constipated than the other groups (P < 0.01). Additionally, quality of life was directly correlated with constipation; subjects in G1 presented the lower mean score of CPCHILD (49.0 SD13.1) compared to G2 (71.5 SD 16.7) when compared to G3 (88.9 SD 7.5), and G4 (95.5 SD5.0) (P < 0.01). Inflammation was more severe for patients in G1 (P < 0.001). There were no differences among groups regarding gender (P = 0.332) and age (P = 0.292). Conclusions: Our results suggest that constipation was mostly affected by the use of certain antiepileptic drugs, namely GABA. This showed a direct detrimental effect on CP quality of life, which was influenced by inflammatory cytokines and the dosage and type of AEDs.

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Quality of life and burden of caregivers of children and adolescents with disabilities

Cited by 57 publications

References 26 publications

Determinants of caregiver burden of persons with disabilities in a rural district in Egypt

Determinants of caregiver burden of persons with disabilities in a rural district in Egypt

Quality of life of mothers who have children with developmental disabilities

Clinical and Inflammatory Factors Influencing Constipation and Quality of Life in Cerebral Palsy

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