Parental Quality Of Life Research Articles

COVID-19 발생 상황에서 장애아동 부모의 스트레스, 불안, 우울과 삶의 질의 관련성

목적 : 본 연구는 COVID-19 발생 상황에서 장애아동 부모의 일반적 특성에 따른 스트레스, 불안, 우울과 삶의 질을 알아보고 이에 따라 스트레스, 불안, 우울과 삶의 질 간의 관련성을 알아보고자 한다. 연구방법 : 2022년 2월 21일부터 3월 21일까지 경상지역 3개의 광역도시에 소재한 장애인 복지관, 재활 병원, 아동발달센터에서 치료 서비스를 이용하고 있는 만 13세 미만 장애아동 자녀를 둔 부모 242명을 대상으로 실시하였다. 결과 : 장애아동 부모의 스트레스, 불안, 우울과 삶의 질의 상관관계를 확인한 결과 삶의 질은 스트레스, 불안, 우울과 음의 상관관계로 나타났다. 장애아동 부모의 일반적 특성에 따른 결과 스트레스는 교육 수 준, 월 소득에서 유의미한 차이가 있었고 불안은 자녀양육시간, 교육 수준, 직업 유무, 교통수단, 월 소득 에서 유의한 차이가 있었으며 우울과 삶의 질은 자녀양육시간, 교육 수준, 직업 유무, 월 소득에서 유의 미한 차이가 있었다. 결론 : 장애아동 부모의 일반적 특성에 따른 스트레스, 불안, 우울과 삶의 질의 관련성을 확인하였다. 장애 아동의 사회적 거리두기 및 방역수칙은 장애아동의 교육과 치료의 기회를 제한시켰고 이로 인해 다양한 어려움을 가지는 장애아동을 양육하는 부모의 스트레스, 불안 및 우울에 미친 영향을 고려해 볼 수 있다. COVID-19 발생 상황 뿐만 아니라 또 다른 재난 상황을 대비하여 장애아동 부모의 스트레스, 불안, 우 울을 관리하고 삶의 질을 증진 시킬 수 있는 지원 서비스 개발의 기초 자료로 제공하는데 의의를 갖는다.

Experiences of peer support amongst parents of children with neurodevelopmental disorders: A qualitative systematic review

ProblemPeer support is a form of social support that can address the complexities of support needs and challenges of parenting children with Neurodevelopmental Disorders (NDDs). However, there is paucity of research on the roles and influences of peer support experienced amongst parents of neurodivergent children. This qualitative systematic review therefore aimed to consolidate and synthesize the experiences of peer support amongst parents caring for neurodivergent children. Eligibility criteriaArticles were selected if they reported primary qualitative findings on the experiences of peer-support amongst parents of children diagnosed with at least one NDD as classified by DSM-5. SampleEleven articles were finalised and included in the review. ResultsFour themes emerged: (1) reasons for seeking peer support, (2) different roles of peer support, (3) contributing elements of successful peer support, and (4) barriers against facilitating peer support. The findings of this review revealed that peer support was a valuable social support resource that met the complex support needs of parents. It enabled parents to provide quality care for their children whilst living with quality of life for themselves. ConclusionsPeer support could be a valuable resource for parents of neurodivergent children as it could potentially enhance quality of life for parents while providing quality care for their children with complex needs. ImplicationsHealthcare providers should integrate peer support as an adjunct resource of social support to help ease caregiver burdens of parents with neurodivergent children.

Quality of life and neurological disability in children and young people with ataxia telangiectasia.

To explore neurological factors affecting quality of life (QoL) in children and young people with ataxia-telangiectasia (A-T), from both child and parent perspective. 24 children/young people with A-T (mean age 11.2±3.5 years; 13 males) and 20 parents were recruited, and 58% were reassessed after an average interval of 3.4 years. Participants completed the PedsQL QoL assessment. Participants with A-T underwent structured neurological examination. QoL data from 20 healthy controls and their parents was used for comparison. Children/young people with A-T rated their QoL higher than parental ratings across time points, with no longitudinal change. Higher age of the child participant correlated with lower parental (r=-0.43, p=.008) but not child ratings of QoL (r=-0.16, p=.380). Child and parent QoL ratings from the A-T group were lower than respective ratings from controls (ηp2=0.44 and ηp2=0.75 respectively, both p<.0005, controlled for socioeconomic status). Parental, but not child, ratings of QoL was predicted by a regression model based on neurological scores (R2=0.44, p=<.001). Neurological disability does not determine child/young person QoL ratings in A-T. While certain aspects of neurological disability predict parent-proxy ratings, there is no decline in QoL over time. These results may reflect resilience in the face of a complex life-limiting disorder.

Characteristics of children attending an autism specific early learning and care setting prior to and following introduction of the National Disability Insurance Scheme

ABSTRACT Background The rollout of the National Disability Insurance Scheme (NDIS) has transformed the Australian funding landscape for individuals with disability and their families. This study examined whether the profiles of autistic children and their families accessing an early intervention (EI) setting have changed following its introduction. Methods The cognition and behavioural profiles of children funded under the NDIS (n = 58) were compared to children who had received block government funding (n = 58). Parental mental health and quality of life (QoL) outcomes were compared. Results Children presented with similar baseline cognition, functional abilities and autism behaviours at intake into EI irrespective of funding type. While parental QoL was similar across groups, parents funded by the NDIS reported significantly higher stress and depression levels. Conclusions The current findings suggest that modifications to the NDIS framework may be necessary to extend benefits beyond the individual living with disability to foster the health and wellbeing of their primary carers.

Quality of life of parents of children with Autism Spectrum Disorder: An integrative literature review.

This paper presents an integrated literature review of the quality of life (QOL) in parents of individuals with Autism Spectrum Disorder (ASD). The rate of ASD is increasing. Parents of children with ASD have higher levels of stress and burden, which may lead to lower QOL. A comprehensive, electronic search was performed to retrieve 15 relevant articles, including 5565 participants. An integrative review was performed to appraise and synthesize findings. QOL was found to be lower in parents of children with ASD in physical, psychological, and social health and in spirituality, as compared with adults who were not parents of children with ASD. The strongest risk factor for parental QOL was the severity of the diagnosis of ASD. Protective factors for parental QOL were parent education level and levels of severity of ASD in the child. Nurses can support families impacted by ASD, particularly severe ASD, through tailored resources to support early diagnosis and intervention, through the support of policies affecting low-income families, and through increased awareness of severe ASD and its' impact on the child and the family.

Symptom Burden of Children with Cancer and Parental Quality of Life: The Mediating Role of Parental Stress.

Background: The aim of this study was to investigate the association between children’s reported symptom burden and their parents’ quality of life, and whether parents’ perceived stress mediates this relationship. Method: this was a cross-sectional quantitative research study. Convenience sampling was used to recruit 80 pairs of parents and their children with cancer. Advanced statistical methods were used to analyse the mediating effects of parental stress between children’s symptom burden and parents’ quality of life. Results: The results showed that parental stress was the mediator in the relationship between children’s reported symptom burden and their parents’ quality of life. Conclusions: Symptom burden was prevalent in Chinese children with cancer living in the community. Children’s symptom burden is an important factor in predicting parental stress level, which simultaneously and directly lower parents’ quality of life. The evidence in this study enlarges the knowledge base about the mediating effect of parental stress on the association between the symptom burden of children with cancer and their parents’ quality of life. This evidence is crucial in paving the way for the development of interventions that improve the parental quality of life through stress-reduction programs.

Relationship of Spiritual Well-being, Social Health, and Parent-Child Interaction with Health-Related Quality of Life in Parents of Children with Specific Learning Disorders

Background: Health encompasses physical, mental, emotional, intellectual, spiritual, and social dimensions. Parents' spiritual well-being can affect their social health and, therefore, their health-related quality of life (HRQOL). Objectives: In this study, we investigated the relationship between spiritual well-being, social health, parent-child interaction, and HRQOL in parents of children with specific learning disorders. Methods: This study investigated the relationship between spiritual well-being, social health, and the statistical population in this descriptive-correlational study comprised all parents of children with certain learning disorders in Andimeshk, Iran, in 2020. Through convenience sampling, 174 parents were selected as the sample. The study used instruments, including the Health-related Quality of Life Questionnaire, the Spiritual Well-being Questionnaire, Keyes's Social Wellbeing Questionnaire (KSWBQ), and the Pianta Child-Parent Relationship Scale (CPRS). Statistical analysis of the data was conducted using Pearson correlation coefficients and simultaneous regression models. Results: There was a significant positive relationship between HRQOL and spiritual well-being, social health, and parent-child interaction (P &lt; 0.001). In addition, the regression analysis demonstrated multiple correlations between HRQOL and spiritual well-being, social health, and parent-child interaction (R = 0.48, P &lt; 0.001). Conclusions: The study found that spiritual well-being, social health, and parent-child interactions were essential in the HRQOL of parents of children with specific learning disabilities.

Supplemental oxygen strategies in infants with bronchopulmonary dysplasia after the neonatal intensive care unit period: study protocol for a randomised controlled trial (SOS BPD study)

IntroductionSupplemental oxygen is the most important treatment for preterm born infants with established bronchopulmonary dysplasia (BPD). However, it is unknown what oxygen saturation levels are optimal to improve outcomes in...

Leisure, employment, community participation and quality of life in caregivers of autistic children: A scoping review

We searched a wide range of academic journals for published information on the participation levels of caregivers of autistic children in activities relating to leisure, social, community and employment contexts, and the impact that participation may have on caregiver quality of life. Overall, we found that the impact of parenting an autistic child is broad with caregivers often prioritising their child's needs over their own, particularly in occupational participation, which impacts their quality of life. Findings also highlighted a need for further research to investigate the experience of caregivers, and the relationship between participation and quality of life in caregivers of autistic children, as the results can inform the development of better supports for them.

To assess autism spectrum disorder parental quality of life during covid 19 in Taif, KSA

To assess autism spectrum disorder parental quality of life during covid 19 in Taif, KSA

Developing the resilience of families with children with special needs

People frequently seek counselling at times of crisis or change. A current precipitating event such as a major life event (e.g. from married to widowed or single, have children with special needs) may spur a person to seek help. Our objectives for this paper are: the assessment of resistance and attachment levels of the families with children with neuro-developmental disorders and evaluating how the parental quality of life is perceived after applying the individualized intervention on the child with special needs.

77-LB: How the Incidence of Anxiety and Other Psychosocial Factors Impact Quality of Life in Parents of Children with Type 1 Diabetes Who Used a Continuous Glucose Monitor (CGM) —A Systematic Review

This study aimed to perform a systematic review related to how anxiety and other psychosocial factors impact quality of life in parents and their children with type 1 diabetes (T1D) who utilize a continuous glucose monitor (CGM) . Electronic databases and published references were utilized to establish studies published between 2012 and 2022. There were 29 studies identified that included the search terms T1D, anxiety, parents, CGM. After careful quantitative measurements analysis, seven studies remained. The researchers of the seven studies utilized CGM in children with T1D and surveyed parental anxiety, psychosocial care and quality of life. The results presented in Table 1 and Table 2 show implications for programming and treatment to support parents of T1D children in reducing the psychosocial and quality of life outcomes when utilizing CGM technology. Disclosure B. C. Sawyer: None. L. M. Hutson: None. A. P. Ciprich: Other Relationship; DarioHealth Corp., Medtronic.

The Impact of ADHD on Maternal Quality of Life.

Childhood attention-deficit/hyperactivity disorder (ADHD) is associated with substantial burden to caregiver quality of life (QoL). However, a paucity of work has focused on quantifying QoL among caregivers of adolescents with a history of ADHD. The purpose of the current study was (1) to quantify maternal QoL in a sample of mothers of adolescents with and without childhood ADHD; and (2) to examine predictors (i.e., parent and child characteristics and behavior)associated with maternal QoL. Participants included mothers of adolescents with (N = 110) and without ADHD (N = 90) ranging in age from 13 to 18 (M = 16.09, 92% male). The Quality Adjusted Life-Year (QALY) was used to calculate maternal QoL using two health domains (i.e., anxiety/depression and disruption in daily activities) commonly impacted by raising youth with ADHD. QALYs are valued monetarily to estimate disease burden. Mothers of adolescents with childhood ADHD experienced significantly worse QoL relative to mothers in the comparison group. Maternal depression, as well as adolescent age, ADHD status, and discipline problems significantly predicted lower levels of maternal QALY health status index, with ADHD being the strongest predictor. This is equal to a reduction in 1.96 QALYs when summed over the course of a child's lifetime and is associated with a loss of $98,000 to $196,000. Results of the investigation help to further elucidate the health impacts incurred by families of adolescents with ADHD and have important public health implications. Further, parental QoL should be considered when conceptualizing the financial and negative health impact of ADHD.

Quality of Life of Parents of Children with Cancer—Single-Center, Prospective Cross-Sectional Study from South India

Abstract Introduction Holistic care for children with chronic diseases including cancer should include psychological support for children and their families. The impact of pediatric malignancies in regard to quality of life (QOL) of parents is poorly described. Objectives We aim to study the QOL of parents of children diagnosed with cancer in physical, psychosocial, environmental, and social domains. Materials and Methods A prospective, cross-sectional study was conducted with 162 parents of children diagnosed with malignancy for 3 months or more. Assessment was done by World Health Organization quality of life (WHOQOL-BREF) questionnaire that includes four domains with a total of 26 questions. Data analysis was done by using Statistical Package for Social Sciences (SPSS) version 20.0; p-value less than 0.05 was considered significant. Results on continuous measurements were presented as “Mean ± SD” and categorical measurements were presented as percentages (%). Differences in the quantitative variables between groups were assessed by unpaired-t-test; comparison between groups by nonparametric Mann–Whitney U test and chi-squared test was used to analyze categorical variables with p-value of &lt; 0.05 using a two-tailed taken as statistically significant. Results Mean raw scores of QOL in physical health, psychological, social, and environmental domains were 20.10, 15.28, 8.10, and 25.24, respectively, with social relationships being the lowest; inadequate or low QOL was noted in 50% study population and it was maximally affected by increased duration of treatment, multimodality treatment, socioeconomic status, rural population, education and occupation status of the parents, and increased cost of care. Type of family or place of residence, family history of psychiatric illness, or malignancy did not influence the QOL of parents of children with cancer. Conclusion Psychological support from the beginning of the treatment along with financial, social support should be offered through a comprehensive care program to improve the QOL.

Family and Individual Quality of Life in Parents of Children with Developmental Disorders and Diabetes Type 1.

Background: This cross-sectional study assessed both family and individual quality of life (QOL), and their association with self-esteem, optimism, chronic psychological stress, anxiety, and depression in parents of children with chronic conditions. Methods: Parents of children with Down syndrome (DS), autistic spectrum disorder (ASD), cerebral palsy (CP), diabetes mellitus type 1 (DMT1), and parents of children without chronic diseases with typical development (TD) were included. Multivariate linear regression analysis was used to assess parental characteristics associated with the domains of individual and family QOL. Results: Compared to the parents of TD children, parents of children with ASD and DS were more likely to report reduced family QOL in all domains, while parents of children with DMT1 had lower parental perception. Self-esteem was positively associated with all domains of individual QOL, while optimism was associated with the overall individual QOL perception and health. Higher stress perception was negatively associated with most of the domains of individual and family QOL. Conclusions: This study confirmed that parents of children with chronic conditions are more likely to have lower perception of both individual and family QOL, which were associated with self-esteem, chronic stress, anxiety, and depression. Interventions should focus not only on the child with a chronic condition but on parents too.

Anxiety, depression, and quality of life in parents of children with congenital hyperinsulinism

This study aimed to assess mental health, family burden, and quality of life (PQoL) in parents of children with persistent congenital hyperinsulinism (CHI). Forty-eight individual CHI parents (75% female) completed self-reported questionnaires and screening tools for anxiety (GAD-7), depression (PHQ-8), PQoL (ULQIE), and family burden (FaBeL). Additional data on sociodemographics, social support, and child- and disease-related data were recorded. 29.8% of parents showed major depressive symptoms and 38.3% had a probable general anxiety disorder, including 20.8% who had both. The family burden was moderate and assessment of PQoL yielded average scores. Neurological impairment in an affected child (p = .002 and p < .001, respectively) and lower working hours (p = .001 and p = .012, respectively) were the strongest predictors of worse GAD-7 and PHQ-8 scores. Furthermore, lower working hours (p = .012) and comorbidities in the affected child (p = .007) were significantly associated with lower PQoL. Mothers had worse GAD-7 scores (p = .006) and lower PQoL (p = .035) than fathers. Indication of sleep disturbance was associated with worse PHQ-8 scores (p = .003), higher family burden (p = .039), and reduced PQoL (p = .003). A higher number of caretakers besides parents was associated with decreased family burden (p = .019), improved PQoL (p < .001), and lower scores for anxiety (p = .016) and depressive (p = .021) symptoms. Conclusion: Symptoms of depression and anxiety are alarmingly prevalent in parents of children with CHI. Psychological screening of parents should be initiated to ensure early identification of psychological strains and psychosocial support should be offered as needed. A good support network and regular work activities can improve parental mental health and well-being.What is Known:• Psychosocial strains and reduced quality of life are common in parents of chronically ill children.What is New:• In this first study evaluating mental health, family burden, and quality of life in parents of children with congenital hyperinsulinism (CHI), symptoms of depression and anxiety were alarmingly prevalent.• Parents of children with CHI should receive regular psychological screening and psychosocial support should be offered as needed. A good support network and regular work activities can improve parental mental health and well-being.

Quality of Life of Parents of Children With Refractory Seizures Referred to a Hospital in Ahvaz, Iran

Background and Objectives Up to 25% of children with epilepsy experience resistance to treatment and recurrence of seizures and have low quality of life (QoL) in various dimensions. Limited evidence is available on the QoL of the parents of these patients in the south of Iran. Therefore, this study aims to evaluate the QoL of parents with children having refractory epilepsy in Ahvaz, Iran Subjects and Methods Using a sequential sampling method, 157 parents of 113 children with refractory epilepsy who referred to the neurology clinic of Golestan Hospital in Ahvaz city during 2009-2016 were selected to participate in the study. The 36-item short form health survey (SF-36) was used to assess the QoL of parents. The significance level of statistical tests was set at 0.05. Results The mean age of parents was 35.2±8.5 years and the mean age of children was 7.1±2.6 years. Of 157 parents, 98 (62.4%) were mothers and the rest were fathers. The children had seizures for 3.1±1.6 years. The mean score of SF-36 was 62.6±21.4. In all domains of the SF-36, mothers had significantly lower scores than fathers (P&lt;0.000). Conclusion The QoL of parents with children having resistant epilepsy, especially their mothers, in Ahvaz is lower compared to the general population of Iranian

Severity of disease and the quality of life indexes in infants with atopic dermatitis.

Atopic dermatitis (AD) is a chronic, relapsing, inflammatory skin disease. In this study, the relationship between the severity of AD and the quality of life (QoL) of patients and their families were evaluated; also, the factors that predict the severity of AD and the QoL index were determined. Infants with AD were enrolled in the study. Pruritus, sleep disturbance, and dermatitis severity scores were obtained. The QoL of infants was assessed using the Infants' Dermatitis Quality of Life Index (IDQOL), while the Family Dermatology Life Quality Index (FDLQI) was used to assess the impact of disease on the QoL of parents. 122 patients diagnosed with AD were enrolled in the study. The correlation analysis of score showed a positive correlation between IDQOL and FDLQI (r = 0.444, p < 0.0001). Positive correlations between the pruritus, sleep disturbance, Severity Scoring of Atopic Dermatitis (SCORAD), Eczema Area and Severity Index (EASI), and dermatitis severity scores and the QoL indexes were found. While pruritus, sleep disturbance scores, and EASI were the most significant parameters for predicting a severe SCORAD score, IDOQL, FDLQI, and SCORAD were the most significant parameters for predicting severe EASI. In the analysis of QoL indexes, sleep disturbance and FDLQI were the most significant parameters for predicting severe IDQOL index, while IDQOL was the most significant parameter for predicting severe FDLQI scores. AD has a negative effect on the QoL of infants and their parents. Pruritus and sleep disturbance should be evaluated during clinical practice due to their strong relationship with disease severity and QoL index.

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.

Lived experiences of patients with distal renal tubular acidosis treated with ADV7103 and of their caregivers: a qualitative study

BackgroundConsequences of distal renal tubular acidosis (dRTA) on growth, bone and kidney, sometimes associated with hearing loss, may significantly affect quality of life (QoL). This descriptive qualitative study explores QoL linked to dRTA and gathers the impressions of patients with this rare disease (and caregivers) 5 years after enrolment in a clinical study, during which patients were treated with ADV7103, a prolonged-release granule formulation combining potassium citrate and potassium bicarbonate. Semi-structured, one-hour interviews with 6 adult and 13 paediatric patients with a confirmed diagnosis of dRTA and with parents of paediatric patients were performed using an interview guide. Qualitative analysis of anonymized interview transcripts based on grounded theory was conducted.ResultsThe main QoL domains impacted by dRTA and its treatment were education/work, social/family life, and emotional and physical well-being. ADV7103 (administered twice daily) was compared with the standard of care (SoC) taken before study entry (more than twice daily). Patients/parents reported that switching from previous SoC to ADV7103 had changed their lives:Difficulties at school due to burdensome administrative issues and need to explain disease and treatment affecting all families of paediatric patients (n = 13) disappeared, facilitating parents who had stopped working (to deal with their child’s treatment) to return to work,Family functioning was improved (n = 18), as travel and holidays became easier to organise and patients/parents stopped thinking about managing treatment daily/nightly, reducing tension in the family or couple,The emotional burden of disease perceived was relieved (n = 12) in the absence of treatment-related invasive questions from others,Gastro-intestinal adverse events and taste problems improved with ADV7103 (n = 18) and better compliance led to milder physical impacts and less need to be hospitalised.The mean satisfaction score with ADV7103 compared to SoC was 9 out of 10 (10 = very satisfied). ADV7103 exceeded or met the expectations of 14 out of 17 patients that commented on that.ConclusionsQualitative interviews show that dRTA and its treatment have a significant impact on QoL of patients and parents and that ADV7103 helps improve daily-life and reduces treatment burden, resulting in greater overall satisfaction of the patients and their families.Trial registration EU Clinical Trials Register, EudraCT 2013-003828-36 on the 3rd of September 2013.