Caregiver Burden in Pediatric Asthma: A Systematic Review

Ekim, Ayfer; Ocakçi, Ayşe Ferda

doi:10.21767/1791-809x.1000476

Cited by 15 publications

(22 citation statements)

References 25 publications

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“…This aligns well with the findings of other researchers who reported that psychosocial determinants are more crucial in predicting parental QOL than medical and demographic variables (Hatzmann et al 2009, Fidika, Salewski, & Goldbeck 2013. In a systematic review on QOL of parents caring for children with Asthma involving 22 studies, Ekim and Ocakci (2016) found that providing higher level of care to child can be burdensome and have negative effect on the physical and psychosocial health of caregivers. The review supports the findings of this study that the QOL of caregivers is lower.…”

Section: Data Collectionsupporting

confidence: 89%

Caring for a Chronically Ill Child While Employed: A cross sectional study on the impact on the quality of life of Jordanian mothers

Gharaibeh

2019

Preprint

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1. Abstract Background: The quality of life of working women who cares for a child with chronic illness is of interest to families and health care professionals, as balancing work-life and routines of daily life gets complex when a child is chronically ill. The purpose of the study was to examine the QOL of working and non-working mothers caring for children with a chronic illness in Jordan. Results: Data from 164 mothers who cared for children with chronic illness were collected between November 2015 and April 2016 for this descriptive comparative cross sectional study using The World Health Organization Quality of Life – BREF (WHOQOL-BREF) tool and examined the physical, psychological, social relationships, and environment domains of their quality of life. The quality of life of working mothers was significantly lower than those of non-working mothers on all domains of WHOQOL-BREF. Mother’s working status, monthly income, evaluation of their own health explained 41% of the variance; adjusted R2 was 0.41, F= (22.17, 157), P <0.0001 Conclusions: Social, family and employer support may help mothers overcome the challenges of caring for a child with a chronic illness and maintain good QOL. Key words: Quality of life, mothers, chronic illness, children

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Section: Data Collectionsupporting

confidence: 89%

Caring for a Chronically Ill Child While Employed: A cross sectional study on the impact on the quality of life of Jordanian mothers

Gharaibeh

2019

Preprint

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“…This was not expected as literature has noted the increased burden of care for a chronically-ill individual [ 9 , 10 , 12 – 16 ]. This has been shown in children diagnosed with asthma [ 12 , 16 ], genetic conditions [ 13 ], Autism Spectrum Disorders [ 15 ], Spina Bifida [ 19 ] and mental health concerns [ 14 ]. It was thus surprising that care for CI children in this sample did not result in either a decreased VAS or index score in the caregiver.…”

Section: Discussionmentioning

confidence: 87%

“…Instruments such as the CarerQoL have yielded important information in the spill-over effect of caring for an ill adult, but little work has been done in measuring the spill-over effect in caring for ill children. It has however been noted that providing care to a child with a chronic condition is burdensome and may affect the physical and psychosocial health of the caregiver negatively [ 12 ]. This is attributed to the fact that delivering this care is mostly unexpected, complex and often leads to extra expenses for medication and equipment as well as extended time for caring of the child [ 12 ].…”

Section: Introductionmentioning

confidence: 99%

Influence of the child’s perceived general health on the primary caregiver’s health status

Verstraete

Ramma²,

Jelsma³

2018

Health Qual Life Outcomes

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BackgroundIn estimating the impact of an intervention, ignoring the effect of improving the health of one member of the caregiver/child dyad on the Health Related Quality of Life (HRQoL) of the other member may lead to an underestimation of the utility gained. This may be particularly true for infants/young children and their caregivers. The aim of this study was to quantify the interaction between the child’s perceived general health as assessed by the newly developed Toddler and Infant Questionnaire (TANDI) on the reporting of the caregiver’s own HRQoL as assessed by the EQ-5D-3 L.MethodsA sample of 187 caregivers participated. A total of 60 caregivers of acutely-ill (AI) and 60 caregivers of chronically-ill (CI) children were recruited from a children’s hospital. The 67 caregivers of general population (GP) children were recruited at a pre-school. Each caregiver completed the proxy rating of their child’s HRQoL on the TANDI (The TANDI is an experimental HRQoL instrument, modelled on the EQ-5D-Y proxy, for children aged 1-36 months), which comprises of six dimensions of health and a rating of general health on a Visual Analogue Scale (VAS). The caregiver completed the EQ-5D-3 L, a self-report measure of their own HRQoL. Forward stepwise regression models were developed with 1) the VAS score of the caregiver and 2) the VAS score of the child as dependent variables. The independent variables for the caregiver included dummy variables for the presence or absence of problems on the EQ-5D-3 L and the VAS score of the child. The independent variables for the child included dummy variables for each TANDI dimension and the VAS of the caregiver.ResultsThe TANDI results indicated that in five of the six dimensions AI children had more problems than the other two groups and the GP children were reported to have a significantly higher VAS than the other two groups. The child’s VAS was significantly correlated with the caregiver’s VAS in all groups, but most strongly in the AI group. The preference based scores (using the UK TTO tariff) were only correlated in the AI group. The inclusion of the child’s VAS increased the variance accounted for 11% of the VAS score of the caregiver. Anxiety and depression was the only dimension which accounted for more variance (18%). Similarly the perceived health state, VAS of the caregiver accounted for 14% of the variance in the child’s VAS, second only to problems with play (25%).ConclusionThere does indeed appear to be a strong relationship between the VAS scores of the children and their caregivers. The perceived general health of the child influences the caregivers reporting of their general health, more than their own report of experiencing pain or discomfort or problems with mobility. Thus, improving the HRQoL of the very young child may improve the caregiver’s HRQoL as well. Conversely, if the caregiver has a lower perceived HRQoL this may result in a decrement in the reported VAS of the child, independent of the presence or absence of problems in the different dimensions. This imp...

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“…A child's chronic illness, such as asthma, induces excessive stress and physical and psychological burdens to parents and the whole family (Ekim and Ocakci 2016;Kim and Yoo 2007;Silva et al 2015). At the same time, caregiver stress is known to contribute to the development and course of child asthma, with depression in the parent predicting poorer asthma control (Celano 2006;Rioseco et al 2017;Rodriguez et al 2017;Wood et al 2015).…”

Section: Parental Burdenmentioning

confidence: 99%