Psychological outcomes, coping and illness perceptions among parents of children with neurological disorders

Kelada, Lauren; Wakefield, Claire E.; Muppavaram, Nagesh; Lingappa, Lokesh; Chittem, Mahati

doi:10.1080/08870446.2020.1859113

Cited by 15 publications

(25 citation statements)

References 56 publications

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“…Partially in line with our hypotheses, parents of children with chronic diseases reported significantly more anxiety, but not more depressive symptoms, compared to parents of healthy children. These findings are in line with other studies reporting high anxiety scores in parents of children with chronic diseases (e.g., Bassi et al, 2020 ; Jones & Reilly, 2016 ; Kelada et al, 2020 ). However, literature on the topic of parental well-being of children with chronic diseases is not univocal (e.g., Kelada et al, 2020 ; Ljungman et al, 2014 ).…”

Section: Discussionsupporting

confidence: 93%

“…These findings are in line with other studies reporting high anxiety scores in parents of children with chronic diseases (e.g., Bassi et al, 2020 ; Jones & Reilly, 2016 ; Kelada et al, 2020 ). However, literature on the topic of parental well-being of children with chronic diseases is not univocal (e.g., Kelada et al, 2020 ; Ljungman et al, 2014 ). This study is the first to compare mental health outcomes between parents of children with chronic diseases and parents of healthy children specifically during the COVID-19 pandemic.…”

Section: Discussionsupporting

confidence: 93%

“…Parents of children suffering from chronic diseases are generally particularly vulnerable for experiencing psychological distress (i.e., depressive symptoms and anxiety) and parenting distress (e.g., Bassi et al, 2020 ; Jones & Reilly, 2016 ; Kelada et al, 2020 ; Ljungman et al, 2014 ). These parents also report lower overall parental quality of life than parents of healthy children ( Goldbeck, 2006 ).…”

Section: Introductionmentioning

confidence: 99%

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Mental Health Outcomes Among Parents of Children With a Chronic Disease During the COVID-19 Pandemic: The Role of Parental Burn-Out

Wauters

Vervoort

Dhondt

et al. 2021

Journal of Pediatric Psychology

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Objective The COVID-19 pandemic and associated quarantine measures highly impacted parental psychological well-being. Parents of children with chronic diseases might be specifically vulnerable as they already face multiple challenges to provide adequate care for their child. The research questions of the current study were twofold: (a) to examine whether parents of children with a chronic disease experienced more anxiety and depression compared to parents of healthy children and (b) to examine a series of risk factors for worsened well-being (i.e., depression, anxiety, and sleep problems), such as sociodemographic variables, COVID-19-specific variables (i.e., financial worries, living space, and perceived quality of health care), and parental psychological experiences (i.e., parental burn-out and less positive parenting experiences). Methods Parents of children with a chronic disease (i.e., the clinical sample; N = 599 and 507 for Research Questions 1 and 2, respectively) and parents of healthy children (i.e., the reference sample: N = 417) filled out an online survey. Results Findings demonstrated that the parents in the clinical sample reported higher levels of anxiety than parents in the reference sample. Analyses within the clinical sample indicated that COVID-19-specific stressors and parental psychological experiences were associated with higher levels of anxiety, depression, and sleep problems. Mediation analyses furthermore indicated that the association of COVID-19-specific stressors with all outcome measures was mediated by parental burn-out. Conclusions Parents of children with a chronic disease constitute a vulnerable group for worse well-being during the current pandemic. Findings suggest interventions directly targeting parental burn-out are warranted.

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Section: Discussionsupporting

confidence: 93%

Section: Discussionsupporting

confidence: 93%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Mental Health Outcomes Among Parents of Children With a Chronic Disease During the COVID-19 Pandemic: The Role of Parental Burn-Out

Wauters

Vervoort

Dhondt

et al. 2021

Journal of Pediatric Psychology

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“…Validated in numerous populations 43 Measure of perceived view of the illness and previously used in caregivers who have a child with a neurological condition 44 Patient Activation Measure-Short Form 45 -adapted 13 items; 1=disagree strongly to 4=agree strongly, with N/A option Validated in adults patients, 45 including those with neurological conditions 46 ; adapted for this study to be completed by a caregiver Measure of patient knowledge, skill and confidence for self-management; using this measure, we found that better patient activation appears to be linked to better health outcomes and healthcare satisfaction, and improved selfmanagement. 47 48 Information searching preferences and experiences 3 items; response descriptors vary Purpose-designed Items regarding time spent searching for information over the past month, where information is sourced from and any barriers to seeking information Note: Q1, baseline; Q2, 3-month follow-up questionnaire; Q2B, bereaved caregivers' follow-up questionnaire; report feedback, report-specific feedback.…”

Section: Open Accessmentioning

confidence: 99%

Acceptability and feasibility of an online information linker service for caregivers who have a child with genetic epilepsy: a mixed-method pilot study protocol

et al. 2022

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IntroductionDevelopmental and epileptic encephalopathies (DEEs) are rare epilepsy conditions that collectively impact 1 in 2000 children. They are highly genetically heterogeneous, resulting in significant barriers to accurate and adequate information for caregivers. This can lead to increased distress and dissatisfaction with the healthcare system. To address this gap, we developed ‘GenE Compass’ to provide caregivers with the highest-quality possible, understandable and relevant information in response to specific questions about their child’s DEE. Using a mixed-method design, we will now pilot GenE Compass to evaluate the acceptability to caregivers and clinicians, feasibility and impact to caregivers.Methods and analysisWe will recruit 88 caregivers (estimated final sample of 50 at follow-up) who have a child under 18 years of age with a suspected or confirmed DEE diagnosis. Following consent and a baseline questionnaire (questionnaire 1 (Q1)), participants will be able to submit questions to GenE Compass over a 3-month period. After 3 months, participants will complete a follow-up questionnaire (Q2) and an optional telephone interview to answer the research questions. Primary outcomes are acceptability of GenE Compass and feasibility of delivering the intervention (eg, cost of the intervention, number of questions submitted and time taken to respond to questions). Secondary outcomes include the impact of GenE Compass on caregivers’ quality of life, information searching behaviours, perceptions of their child’s illness and activation.Ethics and discussionThe study protocol (V.2, dated 16 September 2021) has been approved by the Sydney Children’s Hospitals Network Human Research Ethics Committee (ETH11277). The results will be disseminated in peer-reviewed journals and at scientific conferences. A lay summary will be disseminated to all participants.Trial registration numberACTRN12621001544864.

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“…The burden of disease and treatment may also impact parents’ HRQoL, however, research assessing the impact of chILD on families is lacking 2. Research in other illness groups has shown that parents’ poor mental health and well-being is associated with lower satisfaction with their child’s care, and lower understanding of the illness and treatments 6 7. As such, satisfaction with clinical care may therefore help buffer the impact of chILD on parents, although further research is needed to confirm this.…”

mentioning

confidence: 99%

Genomic testing for children with interstitial and diffuse lung disease (chILD): parent satisfaction, understanding and health-related quality of life

et al. 2022

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ObjectiveResearch is needed to determine best practice for genomic testing in the context of child interstitial or diffuse lung disease (chILD). We explored parent’s and child’s health-related quality of life (HRQoL), parents’ perceived understanding of a genomic testing study, satisfaction with information and the study and decisional regret to undertake genomic testing.MethodsParents of children with diagnosed or suspected chILD who were enrolled in a genomic sequencing study were invited to complete questionnaires pretesting (T1) and after receiving the result (T2).ResultsParents’ (T1, n=19; T2, n=17) HRQoL was lower than population norms. Study satisfaction (T1) and perceived understanding (T2) were positively correlated (rs=0.68, p=0.014). Satisfaction with information (T1 and T2) and decisional regret (T2) were negatively correlated (T1 rs=−0.71, p=0.01; T2 rs=−0.56, p=0.03). Parents reported wanting more frequent communication with staff throughout the genomic sequencing study, and greater information about the confidentiality of test results.ConclusionsUnderstanding of genomic testing, satisfaction with information and participation and decisional regret are inter-related. Pretest consultations are important and can allow researchers to explain confidentiality of data and the variable turnaround times for receiving a test result. Staff can also update parents when there will be delays to receiving a result.

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Psychological outcomes, coping and illness perceptions among parents of children with neurological disorders

Cited by 15 publications

References 56 publications

Mental Health Outcomes Among Parents of Children With a Chronic Disease During the COVID-19 Pandemic: The Role of Parental Burn-Out

Mental Health Outcomes Among Parents of Children With a Chronic Disease During the COVID-19 Pandemic: The Role of Parental Burn-Out

Acceptability and feasibility of an online information linker service for caregivers who have a child with genetic epilepsy: a mixed-method pilot study protocol

Genomic testing for children with interstitial and diffuse lung disease (chILD): parent satisfaction, understanding and health-related quality of life

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