Parental perceptions of health-related quality of life of Albanian children with epilepsy

Kalyva, Efrosini; Melonashi, Erika

doi:10.4081/hpr.2015.2244

Cited by 4 publications

(6 citation statements)

References 27 publications

(21 reference statements)

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“…This can be explained by the fact that more than two-thirds of cases were disclosure the diagnosis over a year ago (at the time of the study), and according to the adaptation theory, the negative feelings and caregiving burden declines over time due to the development of new adaptation capacities [30]. The gender of the children' guardian was not significant in present study and it was consistent with other studies [19] [31] [32]. In Malaysia, the women were the main caregiver in providing care during child sickness.…”

Section: Discussionsupporting

confidence: 88%

Coping Strategies among Parents of Children with Acute Lymphoblastic Leukemia

Sutan¹,

Al-Saidi²,

Latiff³

et al. 2017

Health

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Background: Having a child with acute lymphoblastic leukemia represents challenges to the family which may impact their quality of life. In such circumstances, parents use various coping strategies to face this stressful situation, and understanding the relation of coping strategies on quality of life among parents of children with acute lymphoblastic leukemia may provide professionals with ideas about how to support them which in turn may improve their quality of life. Aim: The aim of the present study was to assess the correlation between coping strategies and the health related quality of life of parents whose children are suffering from acute lymphoblastic leukemia. Study design: A cross-sectional design using guided self-administered questionnaire by a single researcher was used. Methods: A universal sample consisted of 299 parents of children with acute lymphoblastic leukemia (ALL) was recruited from Hospital Universiti Kebangsaan Malaysia and Kuala Lumpur Institute Pediatrics. The response rate was 98%. The data collection tools were WHOQOL BREF which is the World Health Organization Quality of Life shorter version and Brief COPE questionnaires. Results: The results revealed that half of the parents perceived their health related quality of life as good. The highest scores for parents were reported on the social relationship domain meanwhile the lowest were reported on the environmental health domain. In regard to the coping strategies, it was found that religion was most frequently used while humor was the least to be used. Moreover, there was a significant positive relationship between quality of life of the parents and problem-focused coping style and a significant negative relationship with emotion-focused coping style. Conclusion: On the basis of the finding of present study, an appropriate intervention could be design to include program that promote the use of problem-focused copings such as active coping and planning and discourage the use of emotion-focused copings such as selfblaming to enhance parents' health related quality of life.

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Section: Discussionsupporting

confidence: 88%

Coping Strategies among Parents of Children with Acute Lymphoblastic Leukemia

Sutan¹,

Al-Saidi²,

Latiff³

et al. 2017

Health

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“…These high mother-father agreements are in line with current research, that reported moderate to strong agreements [35, 37, 50, 57–59]. But while most studies investigated internalizing and externalizing behavior, only two studies are available, that focused on inter-parental agreement of parent-reported child HRQOL [56, 60]. These samples consisted of parents of children with mental disorders in a clinical setting or parents of healthy children.…”

Section: Discussionsupporting

confidence: 83%

“…These samples consisted of parents of children with mental disorders in a clinical setting or parents of healthy children. Only one study included parents of chronically ill children [60].…”

Section: Discussionmentioning

confidence: 99%

Agreement between mothers’, fathers’, and children’s’ ratings on health-related quality of life in children born with esophageal atresia – a German cross-sectional study

et al. 2019

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Background Esophageal atresia (EA) is a rare congenital malformation, which is characterized by the discontinuity of the esophagus. We investigated the agreement between mothers’, fathers’, and children’s’ ratings on health-related quality of life (HRQOL) in children born with EA. We aimed to broaden the understanding of subjective experiences of HRQOL from different perspectives. We hypothesized that the agreement between mother and father ratings would be high, whereas the agreement between child and mother ratings as well as child and father ratings would show more substantial differences. Methods We obtained data from 40 families (23 mother-father dyads of children aged 2–7 years and 17 mother-father-child triads of children and adolescents aged 8–18 years) with children born with EA, who were treated in two German hospitals. HRQOL was measured using the generic PedsQL™ questionnaires and the condition-specific EA-QOL© questionnaires. We calculated intraclass coefficients and performed one-way repeated measures ANOVAs to analyze differences for each domain as well as for the total scores. Results Intraclass correlation coefficients (ICCs) indicated a strong agreement (≥.80) between mother and father reports of children’s HRQOL for both generic and condition-specific measurements. The ICCs for the generic HRQOL for mother/father-child-dyads revealed only fair to good agreement, whereas ICCs for condition-specific HRQOL showed high agreement for mother-child and father-child-agreement. Analyses of Covariance revealed differences in mother/father-child agreement in the generic domain School, both parents reporting lower HRQOL scores than the children themselves. Fathers reported significantly higher scores in the condition-specific domain Social than their children. Conclusions Results showed that mothers’ and fathers’ reports corresponded to each other. Nonetheless, these reports might not be interchangeably used because mother-child and father-child agreement showed differences. Children might know the best on how they feel, and parent proxy-report is recommended when reasons such as young age, illness, or cognitive impairments do not allow to ask the child. But parent-report – no matter if reported by mother or father – should only be an additional source to broaden the view on the child’s health status and well-being. The current study contributes to a better understanding of the complex family relationships involved when parenting a child born with EA.

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“…Firstly, we wanted to identify differences between mothers and fathers in their assessment of their children’s HRQoL. Previously, only a few studies investigated parent-reported child HRQoL [ 26 – 28 ]. However, parent-reported HRQoL of early childhood cancer survivors has not been examined before.…”

Section: Discussionmentioning

confidence: 99%

Parent-reported health-related quality of life in pediatric childhood cancer survivors and factors associated with poor health-related quality of life in aftercare

Winzig,

Inhestern,

Paul

et al. 2023

Qual Life Res

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Purpose Despite advances in cancer treatment, there is a prevalence of pediatric childhood cancer survivors still at risk of developing adverse disease and treatment outcomes, even after the end of treatment. The present study aimed to (1) explore how mothers and fathers assess the health-related quality of life (HRQoL) of their surviving child and (2) evaluate risk factors for poor parent-reported HRQoL in childhood cancer survivors about 2.5 years after diagnosis. Methods We assessed parent-reported HRQoL of 305 child and adolescent survivors < 18 years diagnosed with leukemia or tumors of central nervous system (CNS) with the KINDL-R questionnaire in a prospective observational study with a longitudinal mixed-methods design. Results In agreement with our hypotheses, our results show that fathers rate their children’s HRQoL total score as well as the condition-specific domains family (p = .013, d = 0.3), friends (p = .027, d = 0.27), and disease (p = .035, d = 0.26) higher than mothers about 2.5 years after diagnosis. Taking variance of inter-individual differences due to family affiliation into account, the mixed model regression revealed significant associations between the diagnosis of CNS tumors (p = .018, 95% CI [− 7.78, − 0.75]), an older age at diagnosis, (p = .011, 95% CI [− 0.96, − 0.12]), and non-participation in rehabilitation (p = .013, 95% CI [− 10.85, − 1.28]) with poor HRQoL in children more than 2 years after being diagnosed with cancer. Conclusion Based on the results, it is necessary for health care professionals to consider the differences in parental perceptions regarding children’s aftercare after surviving childhood cancer. High risk patients for poor HRQoL should be detected early, and families should be offered support post-cancer diagnosis to protect survivors’ HRQoL during aftercare. Further research should focus on characteristics of pediatric childhood cancer survivors and families with low participation in rehabilitation programs.

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Parental perceptions of health-related quality of life of Albanian children with epilepsy

Cited by 4 publications

References 27 publications

Coping Strategies among Parents of Children with Acute Lymphoblastic Leukemia

Coping Strategies among Parents of Children with Acute Lymphoblastic Leukemia

Agreement between mothers’, fathers’, and children’s’ ratings on health-related quality of life in children born with esophageal atresia – a German cross-sectional study

Parent-reported health-related quality of life in pediatric childhood cancer survivors and factors associated with poor health-related quality of life in aftercare

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