Life In Caregivers Of Children Research Articles

Exploring Factors Associated with Quality of Life in Caregivers of Children and Adolescents with Sickle Cell Disease and HIV: A Comparative Analysis.

Paediatric HIV and sickle cell disease (SCD) are two stigmatising and potentially fatal illnesses that place a significant burden on families. HIV patients benefit from a longstanding free-service national programme in Cameroon, and this could considerably alleviate burden of care on HIV caregivers, possibly leading to better quality of life (QoL) in HIV caregivers compared to SCD caregivers. Our study aimed to compare the QoL between caregivers of children and adolescents with SCD and HIV and explore factors associated with this QoL in Cameroon. We conducted a hospital-based cross-sectional analytic study at Douala Laquintinie Hospital from February to May 2023. A questionnaire was administered to caregivers of paediatric patients (≤18 years) with SCD and HIV. The Pediatrics Quality of Life-Family Impact Module (PedsQL FIM), the 7-item Generalized Anxiety Disorder (GAD-7), and the 9-item Patient Health Question (PHQ-9) tools were used as measures of quality of life, anxiety, and depression, respectively. Multivariable linear regression was used to determine factors associated with quality of life. A significance level was set at p < 0.05. We included 199 caregivers: SCD = 104 and HIV = 95. The mean age of caregivers in our sample was 40.47 ± 10.18 years. Caregivers of paediatric patients with HIV had a better mean quality of life than SCD (93.01 ± 7.35SD versus 64.86 ± 9.20SD, p < 0.001). PHQ-9 score (B = -1.52, 95% CI = [-2.08; -0.96], p=<0.001), GAD-7 score (B = -1.46, 95% CI = [-2.09; -0.83], p=<0.001), spending less than 75 000 FCFA on medications monthly (B = 12.13, 95% CI = [5.73; 18.94], p=<0.001), and being a SCD caregiver (B = -11.62, 95% CI = [-18.46; -4.78], p=0.001) were factors independently associated with quality of life on multivariable analysis. Quality of life is lower in caregivers of children and adolescents with SCD than with HIV. Preventing depression and anxiety as well as advocating for the subsidization of medications through a national SCD program may improve quality of life in SCD caregivers.

Quality of Life in Caregivers of Children with Cerebral Palsy in Rivers State, Nigeria

Introduction: Cerebral palsy (CP) is a common neurologic disorder which leads to physical disability in children. Children with CP require more care and attention from their care givers. Hence the quality of life (QoL) of the care givers can be adversely affected.&#x0D; Aim: The aim of this study is to assess the QoL and its determinants among caregivers of children with CP in Port Harcourt, Nigeria.&#x0D; Materials and Methods: Using a convenience sampling method, a hospital based cross-sectional descriptive study was carried out, participants were 96 caregivers of children on follow up for CP. The English Version of the World Health Organization Quality of Life-Bref (WHOQOL-Bref) was used to evaluate the QoL of the participants. A structured questionnaire was used to obtain socio-demographic characteristic of the participants and children with CP, while the patients hospital record was used to obtain the medical history of the patients. The functional disability level of the child was measured by the Gross Motor Function Classification System (GMFCS levels I-V) scale. Multiple regression analysis was carried out to determine the predictors of the care givers QoL on all four domains of the WHOQOL-Bref.&#x0D; Results: The age of the participant ranged from 23 -58 years with a mean age of 37.67± 8.27 years. Seventy-eight (81.3%) were females, 77(80.0%) had secondary education and above while 56 (58.3%) of the patients had co-morbidity. The care givers had lower level of QoL &lt; 60 points in all domains except for Physical Health Domain which had mean point of 61.3.&#x0D; The GMFCS level of the patients with CP and the marital status of the caregivers significantly determined the different domains of the caregivers QoL (p ≤ 0.05). Age of care giver (p 0.00), presence of comorbidity (0.03) significantly predicted the psychological domain of the QoL of the care givers. In addition, the socioeconomic class significantly predicted the environment and psychological domains of the caregivers QoL. (p &lt; 0.05)&#x0D; Conclusion: The quality of life in caregivers of children with cerebral palsy is low. The predictors include GMFCS level of the patient, age of the care giver, marital status, presence of comorbidity and socioeconomic status. The treatment of CP should include strategies to enhance the health and quality of life of caregivers of children with the condition.

Effects of Hippotherapy on Health-Related Quality of Life in Caregivers of Children with Cerebral Palsy: A Pilot Quasi-Experimental Study in Japan.

Despite accumulating data regarding the beneficial effects of hippotherapy on gait and balance skills in children with cerebral palsy (CP), its effects on caregivers' quality of life (QOL) are limited, presumably due to a lack of reliable and valid measurement tools. This study aims to evaluate the impact of hippotherapy on the health-related QOL of primary caregivers using the Japanese version of the Cerebral Palsy Quality of Life for Children (CP QOL) questionnaire. A quasi-experimental design embedded within our existing cohort was utilized. A total of 29 children with CP (range 4-12 years) and their caregivers participated in either a weekly hippotherapy or recreation (usual care) program for 1 year. In addition to gait-related measurements (Gross Motor Function Measure [GMFM]-E) of children, CP QOL-evidenced determinants of the caregivers' health-related QOL and well-being were compared before and after the intervention. In addition to improvements in children's GMFM-E scores, hippotherapy improved CP QOL domains related to participation and physical health, children's emotional well-being, and parents' overall health (p < 0.05). Linear regression analysis showed a positive relationship between the children's GMFM-E scores and their caregivers' health domains in participants who received hippotherapy (r2 = 0.404; p = 0.011). Hippotherapy has a beneficial effect on the physical and mental well-being and satisfaction of Japanese parents caring for children with CP.

Health-related quality of life in caregivers of children with and without neurodevelopmental disorders during the COVID-19 pandemic

Background Family caregivers face health issues that affect their quality of life, especially during the COVID-19 pandemic, which challenges people’s resilience resources. Methods This cross-sectional design study investigated the health-related quality of life (HRQOL) of family caregivers of children with and without neurodevelopmental disorders (N1 = 129, N2 = 126), focusing on four domains: physical, psychological, social, and environmental. Also, we explored the differences between caregivers, considering the child’s comorbidities and disorder severity. Results Participants in group one had lower HRQOL than group two, especially in the social and psychological areas. In addition, as expected, caregivers of children with severe disorders had a more negative perception of HRQOL’s social domain than caregivers of children with mild conditions. Finally, there were differences between HRQOL depending on comorbidities in psychological, social and environmental domains. Conclusions Caregivers of children with neurodevelopmental disorders (especially if the disorder is severe and there are comorbidities) are more vulnerable than other caregivers regarding HRQOL, which conveys the message that social support policies should pay more attention to them.

Stress, anxiety, depression, and health-related quality of life in caregivers of children with intestinal failure receiving parenteral nutrition: A cross-sectional survey study.

Improved survival rates for children with intestinal failure (IF) have resulted in an increased population of children receiving long-term parenteral nutrition (PN). Our objective was to determine burden on caregivers of children with IF receiving long-term PN. We performed a cross-sectional study of caregivers of children with IF receiving long-term PN in our intestinal rehabilitation program. A healthy comparison group matched on age of the child was enrolled. All participants completed standardized questionnaires, including the Parental Stress Index - Short Form (PSI-SF), Hospital Anxiety and Depression Scale (HADS), and PedsQL Family Impact Module (PedsQL FIM). Univariate analysis was completed using a Student t test and chi-square, with an alpha value of <0.05 considered significant. Thirty-eight caregivers of children with IF and 29 caregivers of healthy children consented, with response rates of 89% and 96.5%, respectively. Our study demonstrated increased stress for caregivers compared with comparison parents (PSI-SF total score of 83 [SD = 26.8] vs 62.9 [SD = 13.5]; P < 0.01). Caregivers had increased anxiety (HADS anxiety score of 9.3 [SD = 4.8] vs 6.7 [SD = 3.2]; P = 0.02) and higher depression scores (HADS depression score of 6.3 [SD = 4.3] vs 4.1 [SD = 2.6]; P = 0.02) compared with the comparison group. Caregivers of children with IF demonstrated decreased health-related quality of life (HRQoL) (reduced PedsQL FIM total score of 50.6 [SD = 18.2] vs 84.1 [SD = 20.5]; P < 0.01). Our results demonstrated significant burden of care in caregivers of children with IF receiving long-term PN, with elevated stress, anxiety, and depression and decreased HRQoL.

P38 Dupilumab Improves Quality of Life in Caregivers of Children with Uncontrolled Moderate-to-Severe Asthma: Liberty Asthma Voyage Study

Children with uncontrolled treatment-refractory asthma have poor quality of life (QoL), which also affects their caregivers. Dupilumab blocks interleukin (IL)-4/IL-13 signaling, key and central drivers of type 2 inflammation. In VOYAGE, a 52-week (wk), randomized, double-blind, placebo-controlled phase–3 study (NCT02948959), add-on dupilumab demonstrated efficacy/safety in children aged 6–11 years with uncontrolled moderate-to-severe type 2 asthma. This analysis assessed QoL in caregivers of pediatric participants in VOYAGE.

Anxiety, Depression, and Quality of Life in Caregivers of Children with Cleft Lip and Palate: A Systematic Review

Context: Cleft Lip and Palate (CL/P) is the most common craniofacial malformation in the oral cavity, with a prevalence of “1 to 2in 1,000 live births worldwide. Parents with CL/P children are more prone to experience emotional disorders, especially depression, and have higher child-related stress than the parents of normal children. Due to the effect of the mental status of parents on children, the assessment of the psychological aspects of this problem and its effects on the patients and their parents is critical. Evidence Acquisition: This systematic review was carried out to determine the quality of life (QoL) and emotional problems, including anxiety and depression, in the mothers of CL/P children. All the published studies were searched in three electronic databases, including MEDLINE, PubMed, and Web of Science, up to December 30, 2020, using the keywords "Orofacial Clefts” and “Cleft Lip and Palate” in combination with “Anxiety," "Stress," "Depression," and "Quality of Life” in addition to “Parents," "Mothers," "Fathers," and "Caregivers." Results: Finally, 29 articles met the eligibility criteria for this review. Due to the differences in health care and culture, controversial findings were obtained on the QoL of parents with CL/P children. Social support plays a vital role in the prevention, resolution, and treatment of psychological problems of parents with CL/P children. The majority of studies confirmed the higher levels of anxiety and depression in caregivers of children with CL/P than in normal individuals. Conclusions: These findings emphasize the necessity of psychological screening in the first few months following the diagnosis to facilitate providing appropriate psychological support for parents with CL/P children.

Burden of care and quality of life in caregivers of children and adolescents with autism spectrum disorder.

Autism spectrum disorder is a neurodevelopmental disorder which is increasing across the globe. The disorder in children not only creates burden of care in caregivers but also leads to impaired quality of life of families. To study the burden of care and quality of life in caregivers of children and adolescents with ASD. Cross sectional study conducted in Child and Adolescent psychiatry outpatient services at a government centre in north India between September 2014 to August 2015. The sample consisted of 40 caregivers of children with Autism. Mean age of the caregiver's were 34.72±6.32 years. Burden of care and quality of life were measured by Burden Assessment Schedule (BAS) and World Health Organization Quality of Life Instrument, Short Form (WHOQOL-BREF) questionnaire respectively. Mean burden of care on BAS was 71.73±8.62 indicating quite a high degree of burden on the caregivers of ASD. Significantly higher burden was reported by caregivers belonging to low income families and caregivers of children in age group 6-12 years. A positive correlation was observed between severity of autism and burden of care in caregivers. The study also found that as the severity of symptom increases the QoL in caregiver worsens. Caregivers of children with ASD suffer from high burden of care and impaired QoL.

Quality of life and disease perceptions in caregivers of children with Congenital Adrenal Hyperplasia

BackgroundCongenital adrenal hyperplasia (CAH) is a chronic disorder requiring lifelong therapy. False perceptions, poor knowledge, and social isolation adversely affect the psychosocial health and quality of life of patients and caregivers. The study was undertaken to ascertain the quality of life of caregivers of children with CAH. MethodA hospital-based cross-sectional study enrolled caregivers of children diagnosed with CAH where newborn screening was unavailable. Quality of life (QoL) was measured using the WHO-QoL-BREF questionnaire to compare physical, psychological health, social relationships, and environment. ResultsEighteen children with CAH (9 males), 14 salt-wasting, and 4 simple virilizing CAH with median (IQR) age of 4.3 (2.6, 9.8) years and a follow-up period of 3.8 (1.3, 8.4) years were enrolled. Out of 18 caregivers, 6 were fathers and 12 mothers with a mean (SD) age of 38 (8) years. The mean (SD) of the total score was 69.2 (10.6); physical, psychological, environmental, and social domain were 69.8 (15.1), 57 (12.6), 64 (14.5), and 65 (9.9), respectively. Physical, psychological, and environmental domain scores were significantly higher in upper-middle than lower-middle socioeconomic strata (P < 0.05) and similar between salt-wasting and simple virilizing phenotypes. There was no significant correlation between QoL scores and duration of disease (r = 0.257, P = 0.44). Parents of 7 (38%) patients discussed disease with extended families or neighbors, but none of the school teachers were informed. Death (56%), social acceptance (27%), and infertility (18%) were the major concerns acknowledged. ConclusionThe study reflects the suboptimal quality of life in caregivers of children with CAH. There was no correlation of the duration of disease with the QoL scores. Psychological and social relationship scores were poorest, indicating the need to creating more awareness to remove social taboos associated with this disease.

Quality of Life in Caregivers of Children and Adolescents with Autistic Spectrum Disorder: Development and Validation of the Questionnaire.

Studies have shown that children and adolescents with autism and their relatives present a high level of stress and more family problems, impacting parents’ and caregivers’ quality of life (QoL). Despite studies on this subject, there is no specific questionnaire to evaluate QoL in parents or caregivers of children and adolescents with an autistic spectrum disorder (ASD) in Brazil. Therefore, this study’s primary purpose was to develop and validate a specific questionnaire to evaluate QoL in these individuals. The study was performed using the following steps: development of the ASD Parent/caregiver QoL questionnaire (autistic spectrum disorder parent/caregiver quality of life—ASDPC-QoL), subjective evaluation, validation of the questionnaire by the Delphi method, assessment of internal consistency, responsiveness, and reliability of the ASLPC-QoL, and administration of the questionnaire to 881 Brazilian ASD caregivers or parents. ASDPC-QoL comprises 28 questions divided into four domains (social, concerns, physical and mental health) with good psychometric properties (reproducibility, reliability, internal consistency, responsiveness, and validity). Our data showed that worries and physical health were the domains with the lowest scores in ASDPCA-QoL. ASDPCA-QoL did not differ among gender and age of child considering the total and all domains. Older participants (≥41 y/o) presented the best scores for social and worries domains but did not differ in other domains and the total. Parents or caregivers of ASD children diagnosed for more than three years have better mental and physical health domains than those recently diagnosed (up to 1 year) but did not differ in the total and other domains. Individuals with a partner and with the highest educational level present the best score for the social domain. Employed individuals showed better scores than unemployed ones for all domains and the total, except for worries, which did not differ. It also occurred comparing the individuals that do not use antidepressants and the ones that use them. Assessing and better understanding the QoL of caregivers is highly relevant. By understanding the social, worries, physical, and emotional health domains of caregivers, it is possible to track harmful aspects, prevent and treat pathologies, in addition to assisting in the implementation of effective public policies.

Predicting Quality of Life in Caregivers of Children with Cancer Within One Year Post-Diagnosis

Predicting Quality of Life in Caregivers of Children with Cancer Within One Year Post-Diagnosis

O-45: Stress, Anxiety and Health-Related Quality of Life in Caregivers of Children with Intestinal Failure on Parenteral Nutrition

O-45: Stress, Anxiety and Health-Related Quality of Life in Caregivers of Children with Intestinal Failure on Parenteral Nutrition

Correlates of Social Support and Family Quality of Life in Chinese Caregivers of Children with Autism Spectrum Disorder

ABSTRACT This article identified social support and family quality of life in caregivers of children with autism spectrum disorder (ASD) and examined the correlations between the two variables. Survey research was conducted with 165 caregivers of children with ASD in Sichuan province of China using the Social Support Rating Scale and Beach Center Family Quality of Life Scale. The results revealed that caregivers of children with ASD perceived a moderate level of social support and a medium level of satisfaction on family quality of life. Social support and family quality of life were significantly positively correlated and social support had a positive predictive power on family quality of life. On this basis, it was suggested to develop a social support program for helping families create a beneficial family environment for the development of children with ASD.

Quality of life in caregivers of children with developmental delay – A case–control study

Quality of life in caregivers of children with developmental delay – A case–control study

Abstract B038: A community-based participatory research approach to address healthcare disparities in quality of life of Latino parents of children with cancer

Abstract Disparities in quality of life in Latino youth in cancer treatment and their families have been well documented. Parents of children undergoing cancer treatment experience increased stress that impacts physical and emotional health and subsequently, quality of care received by children. Access to supportive interventions may also be limited for Latino caregivers, due to myriad factors such as lack of insurance, income, language barriers, and documentation status. Accordingly, we aimed to address this gap in the literature by engaging in an equitable collaboration with community partners to develop an intervention to improve quality of life in Latino caregivers of children with cancer. Specifically, we utilized a community-based participatory research (CBPR) model to create a community advisory board with which to partner in this endeavor. Spanish-speaking parents of youth who were in or had previously undergone cancer treatment were recruited. We held regular meetings over the course of one year to identify themes of recurring experiences and barriers to optimal quality of life during children’s cancer treatment. Meetings were continuously evaluated to ensure adherence to the following CBPR principles: 1. collaborative &amp; equitable, 2. mutually beneficial, 3. co-learning process and were transcribed and coded for thematic elements. Significant themes unique to this population included: increased parental stress given cancer care generally fell to one parent, minimal access to self-care strategies, lack of culturally competent healthcare, lack of access to appropriate health-related information, and language barriers affecting quality of communication and information transfer. These themes were used to identify components of a caregiver intervention that includes modules addressing interactions with healthcare providers, self-care with a focus on stress management, and health literacy. Next steps in this program of research are to vet the intervention components with a larger community advisory board to ensure cultural relevance and appropriateness and develop and implement the intervention. This program of research has the potential to minimize disparities in psychosocial outcomes in underserved Latino families of children with cancer. Citation Format: Michelle A Fortier, Ramon Garcia, Lessley Torres, Sonia Zavala, Beverly Mendoza, Elisa Ornelas, Haydee Cortes, Zeev N Kain, Belinda Campos. A community-based participatory research approach to address healthcare disparities in quality of life of Latino parents of children with cancer [abstract]. In: Proceedings of the Twelfth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2019 Sep 20-23; San Francisco, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl_2):Abstract nr B038.

Effects of Drug Provocation Test on the Quality of life in Caregivers of Children with Drug Hypersensitivity

An assessment of the quality of life in caregivers of drug hypersensitive children has rarely been considered. Generally, only one-quarter of the children with suspected drug hypersensitivity are confirmed drug allergy by a drug provocation test (DPT). It would be of great benefit to consider implementing a DPT that may help improve the quality of life of the caregivers. This was a prospective study. The subjects were caregivers of children with drug hypersensitivity who underwent a DPT at the Pediatric Allergy Clinic at Songklanagarind Hospital between November 2017 and April 2019. The PSU-Parent-reported Drug Hypersensitivity Quality of Life Questionnaire (PSU-PDrHy-Q) was used to evaluate the quality of life of the caregivers before and at 2 weeks after the children underwent a DPT. Sixty-eight caregivers were recruited into the study. The median age (IQR) was 38.0 (35.0, 44.0) years. The median age (IQR) of the children with drug hypersensitivity was 6.7 (3.3, 10.5) years. Positive DPT results occurred in 17 (25%) children. According to the PSU-PDrHy-Q, the median total scores (IQR) after the DPTs were lower than before the DPTs (32.6 [20.6, 46.5] vs. 48.3 [26.8, 65.5], p < 0.001). The median score for mental health before and after the DPT were 35.7 (18.3, 49.8) and 24.4 (14.5, 36.2) and for social activity were 10.9 (4.6, 17.7) and 9.1 (5.8, 12.6), respectively (p < 0.001). Taking care of children with drug hypersensitivity affected the quality of life of the caregivers. The quality of life improved after the DPT.

Commentary: "Quality of Life in Caregivers of Children and Adolescents with Osteogenesis Imperfecta"

Commentary: "Quality of Life in Caregivers of Children and Adolescents with Osteogenesis Imperfecta"

Evaluation of the Burden of Care and the Quality of Life in the Parents of Turkish Children with Familial Mediterranean Fever

PurposeThis study aimed to determine the burden of care and the quality of life in caregivers of children with FMF. Design and methodsA cross-sectional study was conducted. Caregivers of the 109 children with FMF followed by a pediatric nephrology department were invited to join the study. Besides demographic information, the Zarit Care Burden Scale (ZCBS) and the World Health Organization Quality of Life Questionnaire-Short Form (WHOQOL-BREF) were used to collect data. Results for 90 patients were analyzed. ResultsThe mean (±SD) ZCBS score of the caregivers was 44.78 ± 13.55. Care burden of the caregivers according to the ZCBS was categorized as; 61.1% (n = 55) mild, 25.6% (n = 23) moderate, and 13.3% (n = 12) severe. Although single caregivers were perceived as having a relatively higher burden than those who were married (80% and 36%), this difference was not significant. There were no statistically significant differences between ZCBS categories concerning caregivers' gender, educational status, and having comorbidities (p > 0.05). Also, there were no significant correlations between ZCBS and the WHOQOL-BREF domains (p > 0.05). ConclusionThis study showed that the quality of life of the caregivers of children with FMF was not adversely affected, but a significant number of caregivers perceived care burden in moderate severity. Attention should be paid to the needs of caregivers, and they should be provided with adequate social, economic, physical, and psychological support. Practice implicationResponsive strategies to support caregivers' should be taken as means of social, economic, physical, and psychological needs.

Caregiver perceptions of when to offer an oral food challenge for children with food allergy

Food allergy (FA) is a rising public health concern, affecting up to 5% of the pediatric population. 1 Sicherer S.H. Sampson H.A. Food allergy: epidemiology, pathogenesis, diagnosis, and treatment. J Allergy Clin Immunol. 2014; 133: 291-307 Abstract Full Text Full Text PDF PubMed Scopus (967) Google Scholar Oral food challenges (OFCs) are the gold standard for diagnosing FA. 2 Bindslev-Jensen C. Ballmer-Weber B.K. Bengtsson U. et al. Standardization of food challenges in patients with immediate reactions to foods—position paper from the European Academy of Allergology and Clinical Immunology. Allergy. 2004; 59: 690-697 Crossref PubMed Scopus (585) Google Scholar Although the decision to undergo an OFC is multifactorial, current guidelines suggest considering an OFC when the likelihood of passing the challenge is approximately 50%. 3 Nowak-Węgrzyn Assa'ad A.H. Bahna S.L. et al. Work Group report: oral food challenge testing. Adverse Reactions to Food Committee of the American Academy of Allergy. Asthma & Immunology. 2009; 123: S365-S383 Scopus (446) Google Scholar Prior studies have shown that performing an OFC is associated with better quality of life (QOL) among caregivers of individuals with FA and reduced parental burden of FA, regardless of challenge outcome. 4 Franxman T.J. Howe L. Teich E. Greenhawt M.J. Oral food challenge and food allergy quality of life in caregivers of children with food allergy. J Allergy Clin Immunol. 2015; 3: 50-56 Scopus (42) Google Scholar , 5 Kansen H.M. Le T.M. Meijer Y. et al. The impact of oral food challenges for food allergy on quality of life: a systematic review. Pediatr Allergy Immunol. 2018; 29: 527-537 Crossref PubMed Scopus (32) Google Scholar Others have reported that maternal anxiety regarding allergic reactions decreases after children pass an OFC. 6 Herbert L.J. Dahlquist L.M. Bollinger M.E. Maternal intolerance of uncertainty, anxiety, and adherence with food challenge referrals. J Health Psychol. 2013; 18: 1209-1219 Google Scholar When caregivers believe it is appropriate to undergo an OFC and whether they are conflicted about that decision is unclear. The aim of our study was to gain further understanding of caregiver knowledge, perceptions, and comfort level participating in OFCs.

Care-related quality of life in caregivers of children with drug-resistant epilepsy.

Epilepsy in children negatively impacts on caregiver quality of life (QOL). The study aimed to evaluate the relationships between patient factors [demographics, clinical factors, health-related quality of life (HRQL)], contextual factors (socio-economic factors), caregiver mood, and caregiver QOL, and whether family factors mediate the relationship between patient HRQL and caregiver QOL. Children aged 4-18years with medically intractable epilepsy were enrolled. Patient demographics, clinical data, patient HRQL [measured using Quality of Life in Childhood Epilepsy Questionnaire (QOLCE)], socio-economic factors, caregiver anxiety and depression, and family factors (adaptation, resources and demands) were assessed. Caregiver QOL was measured using CarerQol, which evaluates care-related QOL, incorporating the negative and positive effects of caregiving. One hundred and eighty-one children were studied. In bivariable regression analysis, higher patient HRQL (QOLCE) (β = 0.54, p < 0.001) and household income (β = 10.49, p = 0.019) were associated with higher caregiver QOL. Higher depression (β = - 2.48, p < 0.001) and anxiety (β = - 2.04, p < 0.001) were associated with lower caregiver QOL. Seizure severity and other socio-economic factors did not influence caregiver QOL (all p > 0.05). In multivariable regression analysis, higher QOLCE (β = 0.21, p = 0.001), lower depression (β = - 1.07, p < 0.001) and lower anxiety (β = - 1.19, p < 0.001) were associated with higher caregiver QOL. Family demands and resources moderated the relationship between patient HRQL and caregiver QOL. Patient HRQL and caregiver mood were more important correlates of caregiver QOL than seizure severity in medically intractable epilepsy. The findings are significant in delineating variables (caregiver mood and family factors) that are potentially modifiable, and show promise for improving caregiver QOL.