Quality of life among caregivers of children with epilepsy: A cross‐sectional study at Eastern Nepal

Abstract

Objective To assess the quality of life among caregivers of children with epilepsy in a tertiary care center of eastern Nepal. Methods A cross‐sectional study was conducted among primary caregivers of children with epilepsy, who accompanied their child in child neurology clinic. Consecutive sampling was done, and 106 respondents were interviewed. Data were collected using World Health Organization Quality of Life‐BREF (WHOQOL‐BREF) scale and analyzed using Statistical Package for the Social Sciences. Descriptive and Inferential statistics were applied. Results Mean WHOQOL‐BREF score was 82.25 {standard deviation (SD) ±12. 11}. Transformed scores (0‐100) for each domain were 57.98 ± 14.55 in physical, 55.87 ± 13.16 in psychological, 53.12 ± 13.42 in social, and 52.52 ± 13.04 in environmental domain. Mean score for overall perception of quality of life (QOL) was 2.71 ± 0.79 and was 3.12 ± 0.75 for overall perception of health. Living below poverty line (P = .03) and poor seizure control status of children (P = .46) were significantly associated with lower total QOL score. Living below poverty line was significantly associated with low social relationship (P = .003) and environment domain (<0.001) scores. Significance Epilepsy has a multifaceted impact on the lives of affected people. Caring children with epilepsy is associated with enormous psychosocial effects on parents and family members. Caregivers' QOL may affect the treatment and outcome of epilepsy in children. Given the consideration to scarcity of this kind of literature in Nepalese context, this study was conducted.

Preliminary Assessment of the Quality of Life and Daily Burden of Caregivers of Persons with Special Needs: A Questionnaire-Based, Cross-Sectional Survey

“…A recent study showed that mothers of persons diagnosed with autistic spectrum disorder represent the main caregivers, who report a relatively high burden particularly associated with a care towards children aged 6 and 12 years, increasing in correlation with the severity of autism. Considering reports of married women taking care of their child with special needs, the results of this study coincide with those found by other authors [21,24], who revealed that the wellbeing of married female caregivers may be maintained, as their ability to share tasks with their husbands can also positively affect their perception of QoL [23]. These interesting findings were also observed in our study, despite the fact that the family income was in the range of two to five minimum wages, allocating families to a group of low socioeconomic status and compromising their livelihood.…”

“…Schreiner et al [28] observed that a ZBI cut-off score ranging from 24 to 26 has significant predictive validity for identifying caregivers susceptible to depression. The authors stated that these caregivers could be reliably identified by administering the ZBI scale alone and their data confirm the anxiety-related overload shown in other studies [21,23]. The moderate overload found seems consistent with the findings of several other studies [26][27][28], although Moreira et al [29] and Estrada-Hernandez [23] demonstrated more intense overload.…”

“…While many forms of the aspects of direct, continuous care dedicated toward patients with special requirements exist, the care provided to PSN is associated with a lifetime of dedication, which raises the question of whether this can lead to an overload of work and whether it influences the personal perception of one's QoL. In our study, middleaged (41-50) females, specifically mothers, were the main caregivers considering the fact that they were responsible for the permanent support and assistance of care-receivers, as similarly noted in several other studies [9,[20][21][22][23]. Predominantly, the cultural factor tends to impose the role of informal caregiver onto women [9].…”

“…As with other studies [9,23], the environment domain reflected the lowest score of 48.8%, addressing unresolved issues related to security, housing, financial resources, health services, leisure, and transport. This domain would require the presence of public policies that guarantee the proper functioning of these services [21].…”

Quality of life among caregivers of epileptic children with degree of controlling seizures in Aseer region

“…[ 5 ] Various aspects of family life can be altered and affected indirectly due to epilepsy as it has been associated with loss of control, independence, fear, confusion, discrimination, problems related to the side effects of antiepileptic drugs, depression, and stigmatization. [ 1 6 7 ] Studies show that having a child with epilepsy produces an elevated stress level on the caregiver that is greater than that noted with other chronic conditions. [ 8 ] They are subjected to long-term stressors, which affect their daily lives and health such as disrupted sleep patterns and sleep deprivation, high rates of depression for both mothers and fathers of children with epilepsy increasing the risk for the poor quality of life (QOL).…”