Life In Parents Of Children Research Articles

발달장애아동 부모의 양육스트레스가 삶의 질에 미치는 영향 : 정보활용의 조절효과를 중심으로

발달장애아동 부모의 양육스트레스가 삶의 질에 미치는 영향 : 정보활용의 조절효과를 중심으로

Parent illness appraisals, parent adjustment, and parent-reported child quality of life in pediatric cancer

ABSTRACTPsychosocial distress is a salient construct experienced by families of children with newly diagnosed cancer, but little is known about parental appraisal of the child's illness and the subsequent impact this may have on child and parent functioning. The goal of the present study was to examine the interrelationships among multiple parent illness appraisals, parent adjustment outcomes, and parent-reported child quality of life in parents of children diagnosed with cancer. Parents completed measures of illness appraisal (illness uncertainty and attitude toward illness), parent adjustment (general distress, posttraumatic stress, parenting stress), and child quality of life (general and cancer-related). Path analysis revealed direct effects for parent illness uncertainty and illness attitudes on all 3 measures of parent adjustment. Illness uncertainty, but not illness attitudes, demonstrated a direct effect on parent-reported child general quality of life; parenting stress had direct effects on general and cancer-related quality of life. Exploratory analyses indicated that parent illness uncertainty and illness attitudes conferred indirect effects on parent-reported general and cancer-related quality of life through parenting stress. Negative parent illness appraisals appear to have adverse impacts on parents' psychosocial functioning and have implications for the well-being of their child with cancer.

Pathways to mental health-related quality of life for parents of children with autism spectrum disorder: roles of parental stress, children’s performance, medical support, and neighbor support

Parental mental health-related quality of life affects the ability of a family to cope with and adapt to the presence of a disability in a family member, such as their child. Therefore, understanding variables that influence parental mental health-related quality of life in families of children with autism spectrum disorder is important. The purpose of this study was to examine the pathways to parental mental health-related quality of life, focusing on the variables of parental stress, children’s performance, medical support, and neighbor support. These variables were hypothesized to be interrelated with one another and directly or indirectly associated with parental mental health-related quality of life. Samples of this study were 429 parents of children with autism spectrum disorder aged 6–17 years in the United States. These parents were selected from the respondents interviewed over the telephone by the 2007 National Survey of Children’s Health. The item indicators selected from the survey were used to construct latent variables for the investigated variables. Structural equation modeling was used to analyze the data. Results showed that parental stress, children’s performance, medical support, and neighbor support played important roles in the pathways. Implications and limitations are discussed.

Hope and subjective well‐being among parents of children with special needs

AbstractThe current study examined subjective well‐being (SWB) in parents who raise children with special needs. Previous studies that focused on parenting children with special needs stressed increased risk of depression. This study examined parental level of hope, the significance of being involved in a partner relationship and parental perception of the seriousness of their child's disability, each a factor that may influence parental SWB. A random sample of 92 parents raising children with special needs in Israel participated in the study. They completed three questionnaires, examining parent's perception of the severity of their child's disability, parental SWB and parents' level of hope. Results revealed that a high level of hope, being in a partnered relationship, and perception of the child's disability as having some positive influence on central aspects of the parents' life, are all significant contributors to raising parental SWB. Study findings show that ‘agency’, a component of the concept of ‘hope’, is a significant factor in predicting SWB in parents of a child with special needs. Perhaps awareness of how they can improve their SWB by using certain aspects of their lifestyle to their advantage can help improve quality of life for parents of children with special needs.

Quality of life for parents of children with autism spectrum disorders

This project describes health-related quality of life (HRQoL) of parents of children with autism spectrum disorders (ASDs) using mixed methods. Parents of children with ASDs (N=224) reported on their HRQoL, depression, and caregiving burden using quantitative tools. HRQoL scores were slightly worse than from those in normative populations especially related to stress and mental health. For example, parents reported average HRQoL scores from SF-6D of 0.74, which was clinically significant lower than an average normative U.S. population. 40% of parents reported having clinical depression symptoms. Married parents reported lower depression symptoms than parents who were not. In addition, families with three or more children with special health care needs (CSHCN) reported lower HRQL and higher caregiving burden than families with less CSHCN. In the qualitative study, we conducted five focus groups to gain insight as to the reasons a child's ASD might influence a parent's HRQoL. Qualitative data further supports the notion that parental HRQoL was negatively influenced by their child's ASDs. Studies that seek to quantify the influence of ASDs and to assess the effect of interventions for children with ASDs may consider measuring the effects on family members as well.

Stress and family quality of life in parents of children with autism spectrum disorder: parent gender and the double ABCX model.

Past research has supported the utility of the Double ABCX model of family adaptation for parents raising a child with autism spectrum disorder (ASD). What remains unclear is the impact of family-related variables on outcomes in both mothers and fathers within the same family. We explored the potential predictors of maternal and paternal stress and family quality of life in an Australian sample of 196 parents of children with ASD aged 3-16years. Using a cross-sectional design, parents completed questionnaires assessing factors within the Double ABCX model attributed to family adaptation. Findings provide further evidence of the negative impact of child externalising behaviours and highlight the importance of family sense of coherence on positive parental outcomes.

Psychological and educational interventions for atopic eczema in children

Psychological and educational interventions have been used as an adjunct to conventional therapy for children with atopic eczema to enhance the effectiveness of topical therapy. This is an update of the original Cochrane review. To assess the effect of psychological and educational interventions for atopic eczema in children. We updated our searches of the following databases to January 2013: the Cochrane Skin Group Specialised Register, CENTRAL in The Cochrane Library (2012, Issue 12), MEDLINE (from 1946), EMBASE (from 1974), OpenGrey, and PsycINFO (from 1806). We also searched six trials registers and checked the reference lists of included and excluded studies for further references to relevant randomised controlled trials (RCTs). Randomised controlled trials of psychological or educational interventions, or both, used to assist children and their carers in managing atopic eczema. Three authors independently applied eligibility criteria, assessed trial quality, and extracted data. A lack of comparable data prevented data synthesis, and we were unable to conduct meta-analysis because there were insufficient data. We included 10 RCTs, of which 5 were new to this update; all interventions were adjuncts to conventional therapy and were delivered in primary- and secondary-care settings. There were 2003 participants in the 9 educational interventions and 44 participants in the 1 psychological study. Some included studies had methodological weaknesses; for example, we judged four studies to have high risk of detection bias, attrition bias, or other bias. Our primary outcomes were participant-rated global assessment, reduction in disease severity (reported as objective SCORAD (SCORing Atopic Dermatitis)), and improvement in sleep and quality of life. No study reported participant-rated global assessment or improvement of sleep.The largest and most robust study (n = 992) demonstrated significant reduction in disease severity and improvement in quality of life, in both nurse- and dermatologist-led intervention groups. It provided six standardised, age-appropriate group education sessions. Statistically significant improvements in objective severity using the SCORAD clinical tool were recorded for all intervention groups when compared with controls. Improvements in objective severity (intervention minus no intervention) by age group were as follows: age 3 months to 7 years = 4.2, 95% confidence interval (CI) 1.7 to 6.8; age 8 to 12 years = 6.7, 95% CI 2.1 to 11.2; and age 13 to 18 years = 9.9, 95% CI 4.3 to 15.5. In three of five studies, which could not be combined because of their heterogeneity, the objective SCORAD measure was statistically significantly better in the intervention group compared with the usual care groups. However, in all of the above studies, the confidence interval limits do not exceed the minimum clinically important difference of 8.2 for objective SCORAD.The largest study measured quality of life using the German 'Quality of life in parents of children with atopic dermatitis' questionnaire, a validated tool with five subscales. Parents of children under seven years had significantly better improvements in the intervention group on all five subscales. Parents of children aged 8 to 12 years experienced significantly better improvements in the intervention group on 3 of the 5 subscales. This update has incorporated five new RCTs using educational interventions as an adjunct to conventional treatment for children with atopic eczema. We did not identify any further studies using psychological interventions. The inclusion of new studies has not substantially altered the conclusions from the original review. The educational studies in both the original review and this update lack detail about intervention design and do not use a complex interventions framework. Few use an explicit theoretical base, and the components of each intervention are not sufficiently well described to allow replication. A relative lack of rigorously designed trials provides limited evidence of the effectiveness of educational and psychological interventions in helping to manage the condition of atopic eczema in children. However, there is some evidence from included paediatric studies using different educational intervention delivery models (multiprofessional eczema interventions and nurse-led clinics) that these may lead to improvements in disease severity and quality of life. Educational and psychological interventions require further development using a complex interventions framework. Comparative evaluation is needed to examine their impact on eczema severity, quality of life, psychological distress, and cost-effectiveness. There is also a need for comparison of educational interventions with stand-alone psychosocial self-help.

Health related quality of life in parents of children with speech and hearing impairment

ObjectivesHearing impairment and specific language disorder are two entities that seriously affect language acquisition in children and reduce their communication skills. These children require specific treatment and higher levels of care than healthy children. Their language abilities also strongly influence parent–child interactions. The purpose of our study was to evaluate the health-related quality of life (HRQOL) of the parents of hearing-impaired children and the parents of children with speech difficulties (specific language disorder). MethodsOur study subjects included 349 parents (182 mothers and 167 fathers) of preschool-aged children with receptive expressive language disorder and 131 parents (71 mothers and 60 fathers) of children with severe hearing impairment. A control group was composed of 146 parents (82 mothers and 64 fathers) of healthy children of the same age. HRQOL was assessed using the SF-36 questionnaire. ResultsFor all groups of parents, the mothers had poorer scores compared with the fathers, but large differences were apparent depending on the child's impairment. In the control group, the scores of the mothers were significantly lower than the fathers’ scores in only two (of eight) health domains. In contrast, the scores were lower in three domains for the mothers of speech-impaired children and in six domains for the mothers of hearing-impaired children, representing the greatest difference between the parents. When compared with the control group, both the mothers and fathers of speech-impaired children scored significantly worse in five health domains. Fathers of hearing-impaired children scored significantly worse than controls in three health domains. The lowest scores, indicating the poorest HRQOL, were observed for mothers of hearing-impaired children, who obtained significantly lower scores than the control mothers in all health domains except the emotional role. ConclusionsThe parents of preschool-aged speech-and hearing-impaired children experience poorer HRQOL than parents of healthy children of the same age. Mothers of hearing-impaired children are especially affected, demonstrating a negative impact in almost all health domains.

Quality of life for parents of children with influenza-like illness: development and validation of Care-ILI-QoL

Influenza-like illnesses (ILI) cause paediatric morbidity and affect the quality of life (QoL) of children and their parents. We have developed a disease-specific questionnaire (Care-ILI-QoL) to measure the QoL of caregivers of children with ILI. The drafting of the Care-ILI-QoL questionnaire was based on a systematic review, a quantitative survey, qualitative interviews with parents, and meetings with paediatricians. Children aged 6-48months recruited from childcare centres in Sydney, Australia, were followed up during the 2011 influenza season. Care-ILI-QoL and SF-12v2 Acute Form were administered to the parent of a sick child 2weeks after the onset of ILI, and again 2weeks after the child had recovered. Exploratory factor analysis was conducted. Internal consistency, concurrent validity, discriminant validity, homogeneity of items, and responsiveness were tested. Out of the 125 children enrolled from 48 childcare centres, 55 children had ILI (total 75 ILI episodes). Care-ILI-QoL was reduced from 25 to 16 items covering four factors: Daily Activities, Perceived Support, Social Life, and Emotions (Cronbach's alphas 0.90, 0.92, 0.78, and 0.72, respectively). Care-ILI-QoL has satisfactory concurrent and discriminant validity, good internal consistency, and excellent responsiveness. Total QoL and factor scores correlated well with SF-12v2 scores. Total QoL scores were significantly lower in parents who perceived their child as very/extremely sick, sacrificed 10hours or more in work or recreation in caring for the child, or whose child had two or more general practitioner visits. Total QoL and factor scores were significantly higher after the child had recovered than when the child had ILI. Care-ILI-QoL is the first ILI-specific QoL instrument for parents and is demonstrated to be valid and reliable in a developed country setting where the child is affected by ILI. It has the potential to be applied in clinical and research settings to assist measurement of disease burden, as a needs assessment tool for resources or to inform policy changes.

Predictors of Health Related Quality of Life in parents of children with Down syndrome

METHODS Parents of 100 children with DS (response rate 55%) completed the TNO-AZL adult quality of life questionnaire (TAAQOL). Using linear regression analyses, scores in each of the four HRQoL-domains were predicted by socio-demographic variables, child characteristics and psychosocial variables, as measured with a self-constructed questionnaire. To limit the number of predictors, a preselection was made per category of predictors, by linear regression analyses .

Health Related Quality of Life for Monosymptomatic Enuretic Children and Their Mothers

There have been few reports addressing how nocturnal enuresis affects the health related quality of life of patients and their mothers. Thus, we evaluated the health related quality of life of enuretic children and their mothers. The health related quality of life of 139 patients with nocturnal enuresis and that of their mothers were evaluated before and after treatment. The children's health related quality of life was evaluated with the Kid-KINDL® protocol. The mothers' health related quality of life was evaluated using the SF-36®, the SDS (Self-Rating Depression Scale) for rating depression and the STAI (State-Trait Anxiety Inventory) for assessing anxiety. In the health related quality of life of enuretic children, the family domain score was significantly lower than that of controls (p = 0.02). In the health related quality of life of the mothers as shown by SF-36, the vitality domain score was significantly lower compared to controls (p = 0.01). The evaluation of the STAI score demonstrated a higher state anxiety score (p = 0.003), which represents current suffering from anxiety, and a similar trait anxiety score (p = 0.22), which represents a similar level of underlying tendency to anxiety. There was no significant difference between the mothers of enuretic children and the controls in the SDS evaluation. After treatment for enuresis the health related quality of life score was improved not only for the enuretic children as assessed by the Kid-KINDL protocol, but also for the mothers of enuretic children as assessed by the SF-36 and STAI. Similar to other pediatric chronic diseases, nocturnal enuresis is a condition that negatively affects the health related quality of life of children and their mothers. Impaired health related quality of life can be improved after the successful treatment of nocturnal enuresis.

P-881 - Anxiety, depression and quality of life in parents of children affected by rare diseases

Rare diseases are chronically debilitating, possibly impairing the quality of life both of the patient and of his parents. To examine the quality of life and the coping strategies of the parents of children affected with rare diseases comparing 30 mothers and 25 fathers of children affected by rare diseases with 30 mothers and 26 fathers of non-rare chronic diseases. Anxiety, depression, coping strategies, satisfaction about their life are assessed. All the subjects are interviewed and undergo an evaluation with the self-report tools Satisfaction With Life Scale, Profile of Mood States, COPE, Hamilton Rating Scale for Depression and Hamilton Rating Scale for Anxiety. The data are analyzed using the statistical package SPSS. Our results show that subjects having children with rare diseases experience more anxiety, but not a more severe depression, worse psychological well-being and have more difficulties to face the daily living. Comparing the mothers and the fathers of children with rare diseases, the first group show higher scores in HRSA. So the feature of uncertainty of a rare disease in terms of aetiology, course and treatment can be associated with a more severe impact on the parents’ psychological end emotional well-being.

Health-related quality of life in parents of children with intermittent exotropia

To assess the health-related quality of life (HRQOL) of parents of children with intermittent exotropia with use of the newly developed condition-specific Parent Intermittent Exotropia Questionnaire (Parent IXTQ) and the generic PedsQL Family Impact Module (PedsQL FIM) and to compare the performance of both instruments. One parent was recruited for each of 59 children with intermittent exotropia (age range, 3-16; median, 7 years) and for each of 29 visually normal children (age range, 5-13; median, 8 years). The parent completed the Parent IXTQ and the PedsQL FIM. For each questionnaire, we compared median HRQOL scores between the intermittent exotropia group and visually normal group. We also calculated normal thresholds, which were defined as the 5th percentile score in the cohort of parents of visually normal children. The proportion of subnormal scores between questionnaires in parents of children with intermittent exotropia was compared. The Parent IXTQ score was worse in the intermittent exotropia group than in the visually normal group (70.6 vs 94.1, p < 0.0001), whereas the PedsQL FIM scores were similar (97.9 vs 95.8, p = 0.8). More parents scored below normal when the Parent IXTQ was used than when the PedsQL FIM was used (31% vs 12%; p = 0.008, McNemar's test). The Parent IXTQ detects subnormal HRQOL in parents of children with intermittent exotropia more often than the PedsQL FIM. It is possible that parental worry may influence management decisions in children with intermittent exotropia and therefore parental HRQOL is worthy of further study.

Erratum to: Subjective Quality of Life for Parents of Children with Autism Spectrum Disorders in Croatia

Erratum to: Subjective Quality of Life for Parents of Children with Autism Spectrum Disorders in Croatia

Subjective Quality of Life for Parents of Children with Autism Spectrum Disorders in Croatia

The purpose of this study was to investigate the subjective quality of life (SQoL) of parents of children with autism spectrum disorders (ASD) who are primary carers. The study included 346 parents: 177 parents of children with ASD and 169 parents of non-disabled children comprised the control group. The Personal Wellbeing Index (PWI) was used to assess SQoL. Parents’ general health perception was assessed with a single question scored on a scale from 1 (poor health) to 5 (excellent health). Parents of children with ASD reported a significantly lower SQoL and general health perception with more physiological symptoms as compared to parents of non-disabled children. In Croatia parents of children with ASD, as primary caregivers, is an especially vulnerable part of the population and need increased social support and assistance in order to achieve and maintain the well-being of the whole family.

The relationship between parental overprotection and health-related quality of life in pediatric cancer: the mediating role of perceived child vulnerability

The current study sought to examine the relation of parental overprotection and perceived child vulnerability to parent-reported health-related quality of life in parents of children with cancer. Parents (N = 89) of children who had been diagnosed with cancer completed measures of parental overprotection, perceived child vulnerability, and parent-proxy report of health-related quality of life. After controlling for theoretically relevant covariates, parental overprotection and perceived child vulnerability were both found to be significantly related to child health-related quality of life. Additional analyses revealed that perceived child vulnerability mediated the relationship between overprotective parenting behaviors and the child's health-related quality of life. The findings highlight the need to assess for these discrete parenting variables in parents of children with cancer and to develop interventions to target parental perceptions of vulnerability.

Quality of Life in Parents of Children with Cerebral Palsy: Is it Influenced by the Child's Behaviour?

The aims of the present study were: to examine the quality of life (QOL) of parents of children with cerebral palsy (CP) and to establish the possible effect of behaviour problems on their QOL. One-hundred children with CP, aged between 4 and 10 years, and both their parents were included in the study. Both parents completed the WHOQOL-BREF, to assess their QOL. A sample of 60 parents of healthy children was used as control group. The primary caregiver also completed the CHILD BEHAVIOUR CHECKLIST (CBCL). Parents of children with CP showed lower scores on physical and psychological domains than the control group on QOL. In the psychological domain the mothers of children with hemiplegia had the lowest scores. The mothers reported lower scores than the fathers for the physical domain in the group of children with diplegia and quadriplegia and for the psychological domain in the group of children with hemiplegia. Children with hemiplegia showed externalizing scores at CBCL higher than the other groups, that could explain the poorer QOL scores of their mothers. In conclusions our results provide useful information on the QOL in families with different forms of CP, useful in planning interventions for the family of children with CP.

Psychosocial burden and quality of life in parents of children with anorectal malformation

Aim:To assess the psychosocial burden and quality of life in parents of children with anorectal malformation.Subjects and Methods:This is a prospective study conducted in a tertiary care specialty hospital. Sample consisted of 50 parents (care givers), having children with anorectal malformation in the age group of 0-14 years. Data were collected through a semi structured interview with the care givers, using Zarit Burden Interview for assessing extent of burden and WHOQOL-BREF for assessing different aspects of quality of life. Statistical analysis used: frequencies, percentages, mean and standard deviations were calculated for analyzing the data.Results:The study reveals greater psychosocial burden and poor quality of life, in terms of the psychological and environmental aspects as compared to the physical and social aspects, among the care givers.Conclusions:The study found increased psychosocial burden and negative impact on the quality of life of parents, which varies with the stages of management and proper continuous counseling is recommended.

Depression, anxiety and quality of life in parents of children with epilepsy

To assess the impact of childhood epilepsy on parental quality of life (QOL) and psychological health, and to investigate possible correlations between parental QOL and background variables as well as parental anxiety and depression. Parents having an epileptic child (n = 263) and parents having a healthy child (n = 270) were enrolled. Groups were in balance for background variables. Short-Form Health Survey (SF-36) Questionnaire, Zung Depression Scale (ZDS) and Zung Anxiety Scale (ZAS) were applied to all parents. Patients were divided into the first visit group (newly diagnosed epilepsy) and follow-up visit group. The parents of children with epilepsy had significantly lower QOL scores in SF-36 for all subscales and higher levels of depression and anxiety by using ZDS and ZAS. The factors correlated with parental QOL were seizure control, visit status, anxiety, depression, employment, cost of epilepsy, status epilepticus, drug side effect and age of parents. Childhood epilepsy has a severe impact on parental QOL and psychological health, and recognition of possible correlations between parental QOL and background variables will be helpful to improve parental QOL.

Quality of Life in Parents of Children with Attention-Deficit–Hyperactivity Disorder in Hong Kong

There is no study on the quality of life (QOL) of parents of children with attention-deficit-hyperactivity disorder (ADHD), although QOL is increasingly gaining more attention and the interactions between children and their parents are bi-directional. The aim of the present study was therefore to survey the QOL of parents of children with ADHD in Hong Kong, and explore the relationships of sociodemographic and clinical variables with QOL. Seventy-seven parents of children with ADHD were consecutively selected and the sociodemographic and clinical characteristics of the parents and their children were assessed. Compared with the general population in Hong Kong, significantly lower scores in physical, psychological, social and environmental QOL domains were found in the parents of children with ADHD. On multivariate analysis, for the children with ADHD, the severity of emotional and hyperactivity/inattention symptoms, and having a comorbid pervasive developmental disorder were significantly correlated with one or more domains of QOL; while for the parents, educational level, household monthly income and having major medical conditions were significantly correlated with one or more domains of QOL. Parents of children with ADHD have low QOL and research is needed to understand the underlying problems.