Health-related quality of life and emotional well-being in parents of children with epilepsy referred for presurgical evaluation in Sweden

Reilly, Colin; Taft, Charles; Nelander, Maria; Malmgren, Kristina; Olssøn, Ingrid

doi:10.1016/j.yebeh.2015.09.025

Cited by 35 publications

(33 citation statements)

References 31 publications

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“…5 Regarding perceived differences between mothers and fathers, our results are in line with the current literature. [18][19][20][21][22] Our sample of mothers showed significant lower MCSs than fathers. Similar results were shown by Pisula and Porębowicz-Dörsmann.…”

Section: Discussionmentioning

confidence: 99%

Quality of Life in Parents of Children Born with Esophageal Atresia

et al. 2018

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Section: Discussionmentioning

confidence: 99%

Quality of Life in Parents of Children Born with Esophageal Atresia

et al. 2018

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“…Moreover, mothers report lower HRQoL than fathers (Aras et al, 2014, Reilly et al, 2015, which is consistent with the Swedish reference population, where women report lower HRQoL than men (Sullivan et al, 2002).…”

Section: Health-related Quality Of Lifesupporting

confidence: 81%

“…Previous studies report a diminished HRQoL in parents of children 0-18 years old, with different chronic conditions, compared to parents of healthy children (Aras et al, 2014, Bella et al, 2011, Reilly et al, 2015, Meltzer et al, 2015. Furthermore, mothers caring for children with cerebral palsy have reported low HRQoL, especially in the domain of vitality, along with low CAR (Bella et al, 2011).…”

Section: Health-related Quality Of Lifementioning

confidence: 98%

What about the parents? : Sleep quality, mood, saliva cortisol response and sense of coherence in parents with a child admitted to pediatric care

Angelhoff¹

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Parents experience many stressful situations when their child is ill and needs medical care, irrespective of the child’s age, diagnosis or the severity of the illness. Poor sleep quality and negative mood decrease the parents’ ability to sustain attention and focus, to care for their ill child, and to cope with the challenges they face. The overall aim of this thesis was to evaluate sleep, mood, cortisol response, and sense of coherence (SOC) in parents caring for children in need of medical care, and to identify factors that may influence parents’ sleep. This thesis includes four original studies; two of these are quantitative, prospective, descriptive and comparative studies including parents (n=82) accommodated in six pediatric wards with their ill child, using questionnaires and sleep logs to measure sleep, mood and SOC, and saliva cortisol to measure cortisol response. A follow-up was performed four weeks later at home, after hospital discharge. The other two studies are qualitative, inductive and explorative interview studies, including parents (n=12) staying overnight with their preterm and/or ill infant in three neonatal intensive care units, and parents (n=15) with a child receiving hospital-based home care in two pediatric outpatient clinics. The interviews were analyzed with a phenomenographic method. Being together with one’s family seems beneficial for sleep and may decrease stress. The ability to stay with the child, in the hospital or at home, was highly appreciated by the parents. When caring for a child with illness, parents’ sleep quality was sufficient in the hospital; however, sleep quality improved further (p<0.05) at home after discharge. The parents reported frequent nocturnal awakenings in the hospital caused by the child, medical treatment and hospital staff. Concern and anxiety about the child’s health, and uncertainty about the future were stressors affecting the parents’ sleep and mood negatively. The parents had lower (p=0.01) morning awakening cortisol levels in the pediatric ward compared to at home, and parents accommodated for more than one night had lower (p<0.05) post-awakening cortisol levels compared to parents staying their first night. The findings of this thesis conclude that being together as a family is important for the parents’ sleep. The ability to be accommodated in the hospital and gather the family around the child may have given the parents time for relaxation and recovery, that in turn may lead to a less stressful hospital stay. When it is beneficial for the child, the whole family should be included in the pediatric care. Moreover, pediatric nurses must acknowledge parents’ sleep, in hospital and at home. Medical treatment and care at night should be scheduled and sleep promoted for the parents in order to maintain health and well-being in the family.

The electronic version of the thesis is a corrected version of the printed thesis.

This thesis has also been funded by Barnklinikens 60-årsfond, Filip SchelinsStiftelse, Riksföreningen för barnsjuk...

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“…Recent systematic reviews have shown that parents of CWE have poorer quality of life relative to controls, and a significant proportion score above the clinical cutoff for major depressive disorder (up to 50% of mothers) and anxiety (up to 58% of parents) . Relative to fathers, mothers of CWE have also been found to have poorer quality of life, and more symptoms of anxiety, depression, and stress; however, it is unclear whether these differences are the result of sex differences or associated with being a primary caregiver . Importantly, the literature to date indicates that poor family environment and parental mental health often have a greater impact on children’s quality of life and health outcomes, relative to epilepsy‐related factors .…”

Section: Introductionmentioning
confidence: 99%

“…11 Relative to fathers, mothers of CWE have also been found to have poorer quality of life, and more symptoms of anxiety, depression, and stress; however, it is unclear whether these differences are the result of sex differences or associated with being a primary caregiver. 9,[11][12][13][14] Importantly, the literature to date indicates that poor family environment and parental mental health often have a greater impact on children's quality of life and health outcomes, relative to epilepsy-related factors. 7,[9][10][11][15][16][17] Some studies have also found that various aspects of family environment act as mediators or moderators in the relationship between parents' mental health and children's quality of life.…”

mentioning
confidence: 99%

Prevalence and trajectories of depressive symptoms among mothers of children with newly diagnosed epilepsy: A longitudinal 10‐year study
Puka
¹
,
Ferro
²
,
Anderson
³

et al. 2019
Epilepsia
14
0
14
0
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Summary Objective Parental depression significantly impacts children’s health and well‐being. This study aimed to (1) estimate the prevalence of depressive symptoms, at six time points, among mothers over the first 10 years after their child was diagnosed with epilepsy; (2) identify trajectories of maternal depressive symptoms over time; and (3) identify baseline factors associated with each trajectory. Methods Data came from the Health‐Related Quality of Life in Children with Epilepsy Study (HERQULES), a Canada‐wide prospective cohort study. Data on child, parent, and family characteristics were collected at the time of diagnosis, and follow‐ups at 0.5, 1, 2, 8, and 10 years. Maternal depressive symptoms were measured using the Center for Epidemiological Studies Depression Scale. Trajectories of depressive symptoms were evaluated using latent class growth modeling, and multinomial logistic regression was used to identify baseline factors associated with each trajectory. Results A total of 356 mothers participated in the study, of whom 57% scored in the at‐risk range for major depression disorder (period‐prevalence). Four unique trajectories were identified as follows: “Low‐Stable” (29% of mothers), “Intermediate‐Stable” (46%), “High‐Stable” (20%), and “High‐Decreasing” (5%). Positive family environment was consistently associated with a better trajectory of depressive symptoms over time; other significant factors included type of seizures, child cognitive comorbidity, maternal age, and maternal education. Significance A substantial proportion of mothers of children with epilepsy are at risk for depression, and this risk is stable over the long term. Family environment at the time of diagnosis has long‐term and persistent effects and may be an ideal target for interventions.

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Health-related quality of life and emotional well-being in parents of children with epilepsy referred for presurgical evaluation in Sweden

Cited by 35 publications

References 31 publications

Quality of Life in Parents of Children Born with Esophageal Atresia

Quality of Life in Parents of Children Born with Esophageal Atresia

What about the parents? : Sleep quality, mood, saliva cortisol response and sense of coherence in parents with a child admitted to pediatric care

Prevalence and trajectories of depressive symptoms among mothers of children with newly diagnosed epilepsy: A longitudinal 10‐year study

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