Health and quality of life among the caregivers of children with disabilities: A review of literature

Isa, Siti Nor Ismalina; Ishak, Ismarulyusda; Rahman, Abdul; Saat, Nur Zakiah Mohd; Din, Normah Che; Lubis, Syarif Husin; Ismail, Muhammad Faiz Mohd

doi:10.1016/j.ajp.2016.07.007

Cited by 92 publications

(78 citation statements)

References 39 publications

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“…These findings are comparable with those reported by caregivers of older adults and with the outcomes of parental stress processes, which also lead to psychological and physical health problems (Isa et al, 2016;Murphy, Christian, Caplin, & Young, 2007). In fact, the main differences in between findings on caregivers of children with disabilities and those on caregivers of persons in other age groups derive more from the concepts used by different researchers than from the actual effects on carers of caregiving.…”

Section: Accepted M Manuscriptsupporting

confidence: 86%

“…Similarly, parents who are caring for children with disabilities experience a great level of stress (Hayes & Watson, 2013;Lee, 2013;Pousada et al, 2013), attributable to various causes, such as behavioural problems and the disability level of the care recipient, ineffective coping strategies, family functioning and poor social support (Isa et al, 2016;Plant & Sanders, 2007). These findings are comparable with those reported by caregivers of older adults and with the outcomes of parental stress processes, which also lead to psychological and physical health problems (Isa et al, 2016;Murphy, Christian, Caplin, & Young, 2007).…”

Section: Accepted M Manuscriptmentioning

confidence: 99%

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Reliability and validity of the COPE Index among caregivers of disabled people

Juntunen

Nikander

Törmäkangas

et al. 2017

Applied Nursing Research

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Aim: To study the reliability and validity of the Carers of Older People in Europe (COPE) Index among caregivers of disabled people of different ages.Methods: A cross-sectional design of Finnish caregivers (n=1 117). Exploratory factor analysis (EFA) was performed separately on samples of three different age groups, and the internal consistencies of the subscales were investigated.Results: Three factors were identified; Cronbach's alpha was .83-.86 for negative impact and .77-.78 for quality of support, indicating good internal consistency. The third factor, positive value, was less consistent across the age groups (α < .66).

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Section: Accepted M Manuscriptsupporting

confidence: 86%

Section: Accepted M Manuscriptmentioning

confidence: 99%

Reliability and validity of the COPE Index among caregivers of disabled people

Juntunen

Nikander

Törmäkangas

et al. 2017

Applied Nursing Research

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“…Variables schooling, employment and per capita income were shown to be positive for QoL and burden in this study. The relationship between worse socioeconomic conditions with lower QoL has been described, and the higher the caregiver's educational level, the better the QoL …”

Section: Discussionmentioning

confidence: 99%

“…Developmental disabilities such as cerebral palsy (CP), Down syndrome (DS), and autism spectrum disorder (ASD) have shown an increase in prevalence. These diseases limit different aspects of childhood development and generate profound changes in family dynamics . In addition, these diseases change the reality of families by demanding relatives to perform new functions …”

Section: Introductionmentioning

confidence: 99%

“…The role of the primary caregiver is essential in helping disabled individuals in maintaining their connection to the community in order to avoid exclusion situations. However, the tasks assigned to the caregiver, with changes in routine and time spent in care and often without adequate guidance and support from health institutions and social networks, may directly affect aspects of their family and social life and, consequently, their QoL …”

Section: Introductionmentioning

confidence: 99%

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

Barros

Gutierrez²,

Barros

et al. 2019

Special Care in Dentistry

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Aims To evaluate the quality of life (QoL) and burden of primary caregivers of children and young adults (PCCYAs) with and without disabilities. Methods A cross‐sectional study was carried out with sample composed of 336 PCCYAs with cerebral palsy (CP; n = 84), Down syndrome (DS; n = 84), autism spectrum disorder (ASD; n = 84), and without disabilities (control group: CG n = 84), matched by gender and age. The burden of caregivers was assessed with the Zarit Burden Interview (ZBI), whereas QoL was assessed using the WHOQOL‐BREF instrument. Results QoL and burden of CG presented better results compared to groups with disabilities, with the lowest environmental domain of all study groups (P <.001). The prevalence of burden was moderate for PCCAs of groups with disabilities. There was association between all WHOQOL‐BREF and ZBI domains and variables age, schooling, occupation and per capita income (Spearman's correlation coefficient, P <.05). There is a negative impact on WHOQOL‐BREF, with an increase in the level of burden of PCCAs with disabilities. Conclusion The majority of PCCYAs were unemployed married mothers, with low schooling and health problems. Older caregivers experience even higher burden and greater impact on QoL.

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Exploring role strain and experiences of caregivers of children living with disabilities

Sakwape¹,

Machailo²,

Koen³

2023

Nursing Open

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Aim To explore and describe caregiver role strain in caregivers of children living with disabilities. Design This study used qualitative explorative, descriptive and contextual design. Methods Eleven participants were purposively chosen from caregivers of children receiving help from the social and community development office. Data collection used semistructured interviews and data saturation occurred with the 11 participants. The data were analysed using content analysis process. The Consolidated Criteria for Reporting Qualitative Research Guidelines were used for reporting. Results Four main themes were identified: caring for a child with disability affects the overall health of the caregiver; caring for children living with disabilities puts financial strain on the caregivers; caring for children living with disabilities has an impact on other roles; and strategies employed to cope with the strain of caring for a child living with disability.

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Health and quality of life among the caregivers of children with disabilities: A review of literature

Cited by 92 publications

References 39 publications

Reliability and validity of the COPE Index among caregivers of disabled people

Reliability and validity of the COPE Index among caregivers of disabled people

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

Exploring role strain and experiences of caregivers of children living with disabilities

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