Health-related Quality of Life of Primary Caregivers of Children With Cerebral Palsy at Hospital
Chapter One
Objectives of study
Primary Objective
To determine the health-related quality of life of primary caregivers of children with cerebral palsy at University of Lagos Teaching Hospital
Secondary Objectives
- To determine factors associated with health-related quality of life of primary caregivers of children with cerebral palsy.
CHAPTER TWO
LITERATURE REVIEW
Health-related quality of life of primary caregivers of children with Cerebral Palsy
Caring for a child that is suffering from a chronic disability such as cerebral palsy can have an adverse effect on the health-related quality of life (QoL) of caregivers. Different facets of the health-related quality of life of primary caregivers of children suffering from cerebral palsy are affected including physical, mental, emotional and social domains (22).
In the study of Yilmaz et al (2013) that investigated the QoL of 137 mothers of children having cerebral palsy compared with 140 mothers of children that were healthy, the mothers of children with CP scored significantly lower in the mental, social, emotional and the vitally aspects of SF- 36 health survey compared to controls (p<0.001). It was also observed that mothers of children suffering from cerebral palsy scored poorly in the Beck Depression Inventory (BDI) than controls, a 21-item scale that assesses key symptoms of depression, with those scoring BDI ≥17 evaluated in favour of depression. Depressed mothers scored poorer in all the domains of SF-36 survey(22).
Primary caregivers of children with cerebral palsy exhibit physical pain depending on the degree of motor disability in their children. Those caring for more dependent children were found to have worse bodily pain compared to those caring for less dependent children. This becomes more evident as the child becomes older and heavier (28,29). Brehaut et al. (2004) studied 468 caregivers of children suffering from cerebral palsy compared with the general population, and reported that caregivers of children with CP described more chronic physical conditions ranging from back pain, headaches and arthritis than the general population(30). Similar findings were reported by Kaya (2010) by comparing physical pain, depression and quality of life of mothers with children suffering from CP against mothers with children that were healthy. According to the study, more physical pain were reported in mothers caring for children suffering from cerebral palsy, with more severe pain experienced by those with higher levels of depression(10).
According to a qualitative study on psychological effects of cerebral palsy in African families, Participants reported that good knowledge of CP contributed positively in coping with the demands of caring for children suffering from CP. On the other hand, 38.5% of participants reported that they were accused of being the reason that their children developed cerebral palsy. They also reported experiencing problems that include loss of job, family disintegration, and financial constraints(31). Similarly, Singogo et al. reported that mothers with children suffering from CP were elatedly their families and the community at large. They were assumed to cause their children to develop the condition. Additionally, mothers also reported that their marriages suffered because of their children (32). On the contrary, Sen et al. (2007) and ones et al. (2005) have explained that mothers with children suffering from a disability blame themselves more and avoid engaging in social activities, and this affects their social life(33,34).
Factors associated with health-related quality of life of primary caregivers of children with cerebral palsy
Health related and demographic factors are associated with QoL of children suffering from cerebral palsy and their caregivers (13). Factors such as functional status of the child, the age of the caregiver, their sex, educational level, level of income, as well as religiosity consistently emerge in literature (20,35,36).
The increase in disability and presence of complications were shown to lower the QoLof the child (13), while low quality of life of the child was shown to significantly affect their caregiver’s quality of life(20). Contradictory findings exist in literature regarding the association of GMFCS, a measure of severity in functional disability in Children suffering from CP, and the caregivers’ QoL. Shirmard et al. found a negative association between GMFCS and QoL of caregivers, showing that severe disability in children correlated with parental stress, which could be a cause for lower QoL (35). Two other studies reported an association between QoL of caregivers and the degree of disability in their children based on GMFCS(22,37). However, other studies failed to demonstrate a relationship between caregivers’ QoL and the disability status in their children(9,34).
Studies by Huang (2014) and Lv (2019) (38,39) have proven linkage between caregivers’ age and QoL while in others found no significant correlation between the two(9,19). A study by Wu et al. in Anhui, China, investigated the QoL of primary caregivers of children suffering from CP that included52 grandmothersand125 mothers. The QoL of mothers and grandmothers of children suffering from CP were both found to be poorer than in the general population in both components of SF-36 health survey. Grandmother caregivers scored poorer than mother caregivers in all aspects(40).
Higher education levels in caregivers of children suffering from CP led to lower stress levels (41). Educated caregivers have the ability to obtain more information and develop a more positive attitude compared to illiterate caregivers (42). Caregivers with less education find it more difficult to access support services which in turn increases their burden of care (43). On the other hand, Adegoke et al. in Nigeria studied 40 mothers with children suffering from CP comparing with 40 mothers with normally developing children and found no significant correlation between caregivers’ education level and their quality of life and further reported that the educational status of caregivers did not affect their ability to deal with the demands arising from their roles as caregivers (19). Interestingly, Lawako and Soares concluded that level of education influenced QoLof caregivers of children suffering from chronic conditions, in their study caregivers that attained university education scored the lowest QoL(36).
CHAPTER THREE
METHODOLOGY
Study design
This was across-sectional study
Study area description
The study was done at University of Lagos Teaching Hospital. The hospital is one of the largest national referral facilities, situated in Lagos state. The hospital has a good number of specialized clinics and therefore attends to a large number of patients with different health conditions from a across the country. The study was conducted among patients visiting pediatric neurology, pediatric outpatient and inpatient (wards 3A, 3B, 3C, 3D) departments, physiotherapy and occupational therapy clinics. These clinics have been selected because it is in these clinics that the diagnosis and treatment of chronic conditions including cerebral palsy are being handled.
Study population
The study population consisted of primary caregivers of children aged 2-12 years who visited University of Lagos Teaching Hospital for care. The cases were caregivers with children aged 2-12 years and have been diagnosed with cerebral palsy after visiting paediatric neurology, paediatric outpatient and inpatient departments, physiotherapy and occupational therapy clinics. The comparison group consisted of primary caregivers of children without chronic illnesses aged 2-12 years who came to the outpatient clinic for care.
CHAPTERFOUR
RESULTS
The study groups were 50 caregivers of children suffering from CP who were compared with equal number of caregivers of children without chronic illnesses. As indicated in Table 1, the mean age of the study group was 32.7 years (sd 6.7 years) and 96% females taking care of children with CP with an average age of 4.7 years (sd 2.9 years) and 52% females. Majority of the study group caregivers were mothers (84%), married ((72%) and with secondary level of education (48%). A half (50%) were unemployed and 60% earned less than 20,000 a month. Majorities (92%) were Christians and 90% did not receive any support from external source. The comparison group were significantly older (mean 35.6 years, p=0.039), had higher proportion of fathers taking care of their children (28%, p=0.003), had lower rates of unemployment (12%, p<0.001). The CP children were mainly in GMFCS of level V (32%), level IV (26%) and level II (26%).
CHAPTER FIVE
DISCUSSION OF FINDINGS, CONCLUSION AND RECOMMENDATIONS
Discussion of Findings
This study compared the HRQoL of 50 primary caregivers of children suffering from CP against 50 primary caregivers of children without chronic illnesses. There existed differences between the two groups on the basis of their age, occupational status and income but otherwise had similar characteristics. Caregivers with children suffering from CP were younger; many of them were unemployed and earned less than the comparison group. The overall HRQoL of primary caregivers with children suffering from cerebral palsy (CP) was significantly poorer than that of caregivers of children without chronic illnesses. The scores for caregivers with children suffering from CP were also poorer in all the domains of SF-36 though significantly in the domains of physical functioning, role limitations due to emotional problems, vitality, mental health and social functioning. The results of this study are similar to results from other studies(19,20,22) that reported lower HRQoL of primary caregivers with children having CP. The overall scores of HRQoL of primary caregivers of children with CP were lower than their controls in all the studies(19,20,22).It is likely the differences between the two groups from the outset might have contributed in the outcome.
The functional levels of children suffering from cerebral palsy did not influence the overall HRQoL of caregivers with children having CP, a significant correlation was demonstrated only in the area of general health. The findings of this study appear similar to those found by other studies (9,34). On the contrary, in other studies a negative correlation was reported between the functional disability of the child assessed using GMFCS and caregivers’ quality of life (13,37), this was more evident in the domain of social functioning. The caregivers’ spent most of their time caring for their disabled children with little time left to socialize.
According to our study, the age of the child was not found to influence the overall HRQoL of caregivers with children suffering from CP. However, a negative association was found to exist between caregivers’ HRQoL and their age. Our findings were similar to what was found in other studies (38,39) that compared caregivers’ age and their quality of life, while in other studies authors found no connection between the two (9,19). The adverse effect of increasing age on the caregivers’ quality of life can also be explained by the strain the ageing process can have on the physical and social life of the caregivers.
Caregivers’ education level did not influence the overall HRQoL of caregivers with children suffering from CP. A similar finding was reported in a another study (40). On the other hand, a few other studies reported a correlation between caregivers’ education level and their quality of life (42,43), it was explained in these studies that educated caregivers had a better chance of accessing social and medical resources that contributed to the improvement in their QoL.
The income of caregivers of children suffering from CP was significantly poorer than that of caregivers of children without chronic illnesses in our study. This is consistent with findings of previous other studies (30,35,44). However, there are studies that showed no significant connection between caregivers’ income and their quality of life (20,45). In our setting caregivers who are mostly mothers prefer to spend more time caring for their children with reduced availability to work for pay, this is further compounded by the lack of social welfare.
Conclusion
According to the findings of our study, the HRQoL of primary caregivers of children with cerebral palsy was noted to be significantly lower than that of caregivers of children without chronic illnesses. The negative impact was more on the domains of physical functioning, role limitations due to emotional problems, vitality, mental health, social functioning and the overall HRQoL. It was also shown that caregivers’ age and income significantly correlated with low HRQoL in caregivers with children having CP.
Recommendations
Measures to improve the HRQoL of caregivers with children having CP should be incorporated in the care of these children.
Provision of financial support to caregivers of children with cerebral palsy to ease their financial burden.
Creation of labour laws and regulations that favor caregivers of children with disabilities.
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