Health-related quality of life in parents of pediatric brain tumor survivors at the end of tumor-directed therapy

Quast, Lauren F; Turner, Elise; McCurdy, Matthew R.; Hocking, Matthew C.

doi:10.1080/07347332.2016.1175535

Cited by 19 publications

(24 citation statements)

References 44 publications

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“…HRQoL has been previously studied in caregivers of children with different diseases, including pediatric oncology populations . In most studies, caregivers reported significant impairment in both mental and physical HRQoL domains.…”

Section: Introductionmentioning

confidence: 99%

“…Identified risk factors were (among others) female parent gender, preexistent parental illness, lack of social or emotional support, less effective coping strategies, and child characteristics such as worse functional status, higher care dependency, and more symptoms or increased disease activity . In childhood oncology, additionally described risk factors are treatment intensity, shorter time since diagnosis, high parental distress and family burden, and lower socioeconomic status …”

Section: Introductionmentioning

confidence: 99%

“…15 HRQoL has been previously studied in caregivers of children with different diseases, including pediatric oncology populations. [16][17][18][19][20][21][22][23] In most studies, caregivers reported significant impairment in both mental and physical HRQoL domains. Identified risk factors were (among others) female parent gender, preexistent parental illness, lack of social or emotional support, less effective coping strategies, and child characteristics such as worse functional status, higher care dependency, and more symptoms or increased disease activity.…”

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confidence: 99%

“…17,18,24 In childhood oncology, additionally described risk factors are treatment intensity, shorter time since diagnosis, high parental distress and family burden, and lower socioeconomic status. [21][22][23]25,26 These determinants are predominantly based on responses provided by one parent, mostly mothers. Few pediatric studies have investigated HRQoL in parental couples, often with small sample sizes.…”

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confidence: 99%

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Gender‐specific differences in parental health‐related quality of life in childhood cancer

Rensen

Steur

Schepers

et al. 2019

Pediatric Blood & Cancer

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Background Parents of children with cancer are at risk for impaired health‐related quality of life (HRQoL). Most prior research has focused on the HRQoL of mothers. The aim of this study is to describe HRQoL in mothers and fathers, and determine the influence of sociodemographic, medical, and psychosocial factors. Procedure In a cross‐sectional study, both parents completed questionnaires on sociodemographics, distress, and HRQoL. Parental HRQoL was compared to healthy population values. Differences between mothers and fathers were evaluated with multilevel analysis. Gender‐specific HRQoL determinants were assessed via multiple linear regression analysis. Results Parents (202 mothers, 150 fathers; comprising 121 couples) of 231 children with different cancer diagnoses (mean time since diagnosis 3.3 ± 1.4 years, 90% posttreatment) participated. Compared to healthy women and men, mothers and fathers reported significantly impaired HRQoL on the following domains: cognitive functioning, sleep, daily activities, and vitality (Cohen's d = 0.3‐0.9). Additionally, maternal HRQoL was reduced on the domains gross motor functioning, pain, social functioning, sexuality, and depressive emotions. Mothers scored worse than fathers on six of 12 domains. Risk factors for adverse outcomes in both parents were higher distress, emotional and parenting problems, little social support, medication use, and active treatment of the child. Other determinants in mothers were non‐Dutch background and unemployment, while lower HRQoL in fathers was predicted by their child's diagnosis type, shorter time since diagnosis, and treatment intensity. Conclusion These outcomes illustrate the need for family‐centered care. Future interventions aimed at improving parental functioning should take into account gender‐specific differences in HRQoL to reach optimal efficacy.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

mentioning

confidence: 99%

mentioning

confidence: 99%

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Gender‐specific differences in parental health‐related quality of life in childhood cancer

Rensen

Steur

Schepers

et al. 2019

Pediatric Blood & Cancer

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“…Parents of AYA brain tumor survivors remained at-risk for adverse QOL at an average of 10 years post-diagnosis. One explanation for this finding is that parents of AYA brain tumor survivors continue to deal with disabilities and chronic health conditions which necessitate long-term aftercare and negatively impact QOL [24]. Additional characterization of these high-risk parents across the trajectory of survivorship care is needed.…”

Section: Discussionmentioning

confidence: 99%

Quality of Life Among Parents of Adolescent and Young Adult Brain Tumor Survivors

Buchbinder

Fortier

Osann³

et al. 2017

Journal of Pediatric Hematology/Oncology

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We aimed to describe the quality of life (QOL) among parents of adolescent and young adult (AYA) brain tumor survivors as well as parent, survivor, and diagnosis/treatment-related factors associated with adverse QOL. A cross-sectional study of 28 parents of AYA brain tumor survivors (who were on average 10 years post-diagnosis) was used to assess QOL. Parent QOL was measured using the Patient-Reported Outcomes Measurement Information System Global Health measure. Factors associated with adverse parent QOL were explored using logistic regression including: parent, survivor, and diagnosis/treatment-related factors. Parent QOL was within the normal range; however, 40% scored below the clinical threshold of 0.5 SD below the mean for physical and mental health. Parent perceptions of greater family impact, survivor emotional/behavioral health problems, improved cognitive function, and recurrence were associated with adverse parent physical health. Parent anger/sorrow, uncertainty, survivor emotional/behavioral health problems, speech/language problems, and recurrence were associated with adverse parent mental health. Parental emotional resources and perceptions of improved survivor peer relationships were associated with greater parent physical and mental health. The impact of a brain tumor diagnosis and treatment on the QOL of parents may be significant. Interventions are needed to ensure that the needs of parents are met.

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Mothers participation in caring for hospitalized children with acute gastroenteritis: A quasi‐experimental study

Nankali,

Cheraghi,

Tehrani

et al. 2023

Nursing Open

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AimsTo identify informational and practical deficits of mothers of hospitalized children with acute gastroenteritis and to determine the effect of intervention on enhancing mothers' participation in providing care.DesignThis study was a two‐group pre‐ and post‐test quasi‐experimental study.MethodsSample size was eighty mothers of hospitalized children younger than 5 years with acute gastroenteritis in each group using consecutive sampling method. Based on the needs assessment, the training and practical demonstration were performed individually in the intervention group. The control group received usual and standard care. The care practice of mothers were observed before and three times after the intervention at a 1‐day interval. The confidence level was 0.95.ResultsAfter intervention, there was a significant increase in the mothers' care practice in the intervention group and a significant difference between the two groups. The participatory care approach could enhance mothers' practice in providing care to the hospitalized children with AGE.

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Health-related quality of life in parents of pediatric brain tumor survivors at the end of tumor-directed therapy

Cited by 19 publications

References 44 publications

Gender‐specific differences in parental health‐related quality of life in childhood cancer

Gender‐specific differences in parental health‐related quality of life in childhood cancer

Quality of Life Among Parents of Adolescent and Young Adult Brain Tumor Survivors

Mothers participation in caring for hospitalized children with acute gastroenteritis: A quasi‐experimental study

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