Parent-Child Dyadic Coping and Quality of Life in Chronically Diseased Children.
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ABSTRACT:
SUBMITTER: Nap-van der Vlist MM
PROVIDER: S-EPMC8355494 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Research has shown that television viewing cultivates a materialistic worldview in children. However, other socialization factors may also influence children's materialism. The current research tests two socialization pathways of parental influence: (a) an indirect path in which parents pass on their own materialism to their children, and the parent's materialism is at least partly the result of a parent cultivation effect (parent cultivation); (b) an indirect path in which parents pass on their television viewing behavior to their children, which in turn positively predicts the children's level of materialism (child cultivation). The results of two studies (initial study plus direct replication, N = 818) of U.S. parent-child dyads with 14- to 17-year-old children support the first path but not the second: The relation between parent TV viewing and child materialism is mediated through parent materialism. Child TV viewing is positively correlated with child materialism, but is nonsignificant when parent materialism is controlled.
| S-EPMC8252968 | biostudies-literature
Project description:BackgroundDiscrepancy between self-reports and parent-proxy reports of adolescent health-related quality of life (HRQoL) has been repeatedly acknowledged in the literature as the proxy problem. However, little is known about the extent and direction of this discrepancy. The purpose of this study is to explore to what extent and in what direction HRQoL self-reports of adolescents with chronic conditions and those of their parents differ.MethodsA cross-sectional survey was conducted among adolescents suffering from chronic conditions and their parents. Socio-demographic and disease-related characteristics were collected and information about consequences of the chronic condition was assessed. HRQoL was measured with KIDSCREEN-10 and DISABKIDS condition generic measure (DCGM-10). Agreement was analysed through defining a threshold of agreement based on half of the standard deviation of the HRQoL score with the highest variance. Agreement occurred if the difference between adolescent and parent scores was less than or equal to half of the standard deviation. Intra-class correlation coefficients and Bland-Altman plots were also computed. The characteristics associated with direction of disagreement were statistically tested with one-way ANOVA and Chi-square tests.Results584 paired HRQoL scores were obtained. Ratings from both adolescents and parents were high, compared to European norm data. Differences between adolescents and parents were statistically significant, yet relatively small. Disagreement existed in both directions: in 24.5% (KIDSCREEN-10) and 16.8% (DCGM-10) of the cases adolescents rated their HRQoL lower than did their parent, while in 32.2% (KIDSCREEN-10) and 31.7% (DCGM-10) of the cases the opposite was true. Adolescent's age, educational level and type of education, parent's educational level, number of hospital admissions and several other disease-related factors influenced direction of disagreement.ConclusionsIn a reasonable proportion of cases the adolescent and parent agreed on the adolescent's HRQoL (43-51% of the cases) and most disagreement tended to be minor. Thus, the proxy problem may be smaller than presented in the literature and its extent may differ per population. As adolescents are expected to become partners in their own health care, it is recommended to focus on adolescents' own perceptions of HRQoL.
| S-EPMC3299605 | biostudies-literature
Project description:It is unknown whether children with functional gastrointestinal (GI) disorders identify specific foods that exacerbate their GI symptoms. The objectives of this study were to determine the perceived role of food on GI symptoms and to determine the impact of food-induced symptoms on quality of life (QOL) in children with functional GI disorders. Between August and November 2010, 25 children ages 11 to 17 years old with functional GI disorders and a parent completed a food symptom association questionnaire and validated questionnaires assessing FGID symptoms and QOL. In addition, children completed a 24-hour food recall, participated in focus groups to identify problematic foods and any coping strategies, and discussed how their QOL was affected. Statistical analyses were conducted using ?2, t test, Mann-Whitney U test, Wilcoxon signed rank, and Spearman's ?. Children identified a median of 11 (range=2 to 25) foods as exacerbating a GI symptom, with the most commonly identified foods being spicy foods, cow's milk, and pizza. Several coping strategies were identified, including consuming smaller portions, modifying foods, and avoiding a median of 8 (range=1 to 20) foods. Children reported that food-induced symptoms interfered with school performance, sports, and social activities. Although the parent's assessment of their child's QOL negatively correlated with the number of perceived symptom-inducing foods in their child, this relationship was not found in the children. Findings suggest that specific foods are perceived to exacerbate GI symptoms in children with functional GI disorders. In addition, despite use of several coping strategies, food-induced symptoms can adversely impact children's QOL in several important areas.
| S-EPMC4267718 | biostudies-literature
Project description:OBJECTIVES:Severe to profound hearing loss is associated with worse health-related quality of life (HRQoL), reflecting the wide-ranging effects of deafness on spoken language, cognition, and social/behavioral development. However, there are currently no cochlear implant (CI)-specific HRQoL measures that were developed using the Food and Drug Administration Guidance on patient-reported outcomes. This study developed the first HRQoL instruments (CI-QoL) for children with CIs, ages 6 to 12, and a parent-proxy measure for this age group. DESIGN:Two phases of instrument development were conducted. Phase 1 consisted of a literature review yielding a conceptual framework and discussion guides to elicit information from stakeholder focus groups at CI clinics in Miami and Philadelphia (n = 30; e.g., physicians, speech pathologists). During phase 2, open-ended interviews were conducted with 21 parent-child dyads (M child age = 9.1 years) recruited from these two clinics. Interviews were transcribed, followed by content analysis in NVivo to identify the most frequent and difficult themes. Items were then derived from these themes to form the initial draft instruments. A multimodal approach was used to create the child-report version (i.e., pictorial representations, audio recording of items, written text above the drawings) to maximize comprehension and ease of responding. Both measures were developed to be administered electronically on a tablet device. In phase 3, a new set of parent-child dyads (n = 20; child age M = 9.2 years) completed a cognitive testing protocol to ensure clarity, ease of use, and comprehensiveness. Cognitive testing led to revisions and finalization of the instruments. RESULTS:The final self-report measure contained 33 items across eight domains: Noisy Environments, Academic Functioning, Child Acceptance, Oral Communication, Social Functioning, Fatigue, Emotional Functioning, and Device Management. The final parent-proxy measure included 42 items on nine scales: the same eight scales that appear on the child version, with the addition of Behavior Problems. Correlations between child and parent reports on each scale ranged from r = 0.08 to 0.48. CONCLUSIONS:CI-specific HRQoL instruments have now been developed for school-age children with CIs, with an accompanying parent-proxy version. After a psychometric validation, these CI-specific measures will enable us to track long-term outcomes, evaluate the efficacy of interventions to improve CI use (e.g., single versus bilateral implantation, AV therapy, maternal sensitivity training), and provide a profile of the "whole child's" functioning to facilitate care.
| S-EPMC6348146 | biostudies-literature
Project description:BackgroundSuccessfully coping with a chronic disease depends significantly on social support, particularly that of a significant other. Thus, it depends on the ways of dealing with stress within a couple (dyadic coping). In this study, the relationship between dyadic coping and well-being was investigated among couples in which one partner suffers from chronic obstructive pulmonary disease (COPD).MethodsA total of 43 couples participated. They were mailed questionnaires on anxiety and depression (Hospital Anxiety and Depression Scale), quality of life (World Health Organization Quality of Life Questionnaire-BREF), and dyadic coping (Dyadic Coping Inventory).ResultsLow scores of positive and high scores of negative dyadic coping were associated with poorer quality of life and higher psychological distress among couples. Delegated coping (assistance with daily tasks) was higher among partners. When estimated by patients, high delegated partner coping (frequent provision of support by partners) and low delegated personal coping (low provision of support by patients) were associated with poorer quality of life for both patient and partner. COPD patients suffering from depression were supported more often and attributed deficits in dyadic coping primarily to themselves, whereas partners with higher scores of depression provided higher estimates of both their own negative coping and the negative coping of their partner.ConclusionThe higher the patient perceived the imbalance in delegated dyadic coping, the lower the couple's quality of life. More negative and less positive dyadic coping were associated with lower quality of life and higher psychological distress. Psychotherapeutic interventions to improve dyadic coping may lead to better quality of life and less psychological distress among COPD patients and their partners.
| S-EPMC3224653 | biostudies-literature
Project description:BACKGROUND:Caring for teens with special health care needs places physical and mental health burdens on parents, which can be exacerbated by the stresses of transitions to independence. Medical homes can improve teen transitions to greater self-management and reduce health care-related time and financial burdens for families. We examined the association between parent-reported teen medical home status and caregiver health-related quality of life (HRQOL). METHODS:The study sample included parents or caregivers of teens with special health care needs aged 15 to 18 recruited from a pediatric Medicaid accountable care organization who participated in a survey (response rate,?40.5%). The primary outcome was parent HRQOL scores (0-100 points) measured using the Pediatric Quality of Life Inventory Family Impact Module. Medical home status was based on parent report of teen's health care meeting medical home criteria. Linear regression models were used to estimate HRQOL scores, adjusted for demographic characteristics, health literacy, and teen functional limitation. RESULTS:Among 488 parents, 27% reported their teen received care consistent with a medical home. Adjusted parent HRQOL scores were significantly higher among those whose teens had a medical home (74.40; 95% confidence interval, 71.31-77.48), relative to those whose teens did not (65.78; 95% confidence interval, 63.92-67.65). Medical home subscale analyses showed HRQOL scores had significant positive associations with family-centered care and coordinated care, but not other subscales. CONCLUSIONS:Teen medical home status was positively associated with caregiver HRQOL, suggesting that the medical home may benefit overall caregiver well-being. In particular, receiving care that was family centered and coordinated appeared to be the most beneficial.
| S-EPMC6078780 | biostudies-literature
Project description:BackgroundThe KIDSCREEN-27 is a measure of child and adolescent quality of life (QoL), with excellent psychometric properties, available in child-report and parent-rating versions in 38 languages. This study provides child-reported and parent-rated norms for the KIDSCREEN-27 among Swedish 11-16 year-olds, as well as child-parent agreement. Sociodemographic correlates of self-reported wellbeing and parent-rated wellbeing were also measured.MethodsA random population sample consisting of 600 children aged 11-16, 100 per age group and one of their parents (N = 1200), were approached for response to self-reported and parent-rated versions of the KIDSCREEN-27. Parents were also asked about their education, employment status and their own QoL based on the 26-item WHOQOL-Bref. Based on the final sampling pool of 1158 persons, a 34.8% response rate of 403 individuals was obtained, including 175 child-parent pairs, 27 child singleton responders and 26 parent singletons. Gender and age differences for parent ratings and child-reported data were analyzed using t-tests and the Mann-Whitney U-test. Post-hoc Dunn tests were conducted for pairwise comparisons when the p-value for specific subscales was 0.05 or lower. Child-parent agreement was tested item-by-item, using the Prevalence- and Bias-Adjusted Kappa (PABAK) coefficient for ordinal data (PABAK-OS); dimensional and total score agreement was evaluated based on dichotomous cut-offs for lower well-being, using the PABAK and total, continuous scores were evaluated using Bland-Altman plots.ResultsCompared to European norms, Swedish children in this sample scored lower on Physical wellbeing (48.8 SE/49.94 EU) but higher on the other KIDSCREEN-27 dimensions: Psychological wellbeing (53.4/49.77), Parent relations and autonomy (55.1/49.99), Social Support and peers (54.1/49.94) and School (55.8/50.01). Older children self-reported lower wellbeing than younger children. No significant self-reported gender differences occurred and parent ratings showed no gender or age differences. Item-by-item child-parent agreement was slight for 14 items (51.9%), fair for 12 items (44.4%), and less than chance for one item (3.7%), but agreement on all dimensions as well as the total score was substantial according to the PABAK-OS. Visual interpretation of the Bland-Altman plot suggested that when children's average wellbeing score was lower parents seemed to rate their children as having relatively higher total wellbeing, but as children's average wellbeing score increased, parents tended to rate their children as having relatively lower total wellbeing. Children living with both parents had higher wellbeing than those who lived with only one parent.ConclusionsResults agreed with European findings that adolescent wellbeing decreases with age but contrasted with some prior Swedish research identifying better wellbeing for boys on all dimensions but Social support and peers. The study suggests the importance of considering children's own reports and not only parental or other informant ratings. Future research should be conducted at regular intervals and encompass larger samples.
| S-EPMC4784934 | biostudies-literature
Project description:BackgroundResearch to date has largely conceptualized irritability in terms of intraindividual differences. However, the role of interpersonal dyadic processes has received little consideration. Nevertheless, difficulties in how parent-child dyads synchronize during interactions may be an important correlate of irritably in early childhood. Innovations in developmentally sensitive neuroimaging methods now enable the use of measures of neural synchrony to quantify synchronous responses in parent-child dyads and can help clarify the neural underpinnings of these difficulties. We introduce the Disruptive Behavior Diagnostic Observation Schedule: Biological Synchrony (DB-DOS:BioSync) as a paradigm for exploring parent-child neural synchrony as a potential biological mechanism for interpersonal difficulties in preschool psychopathology.MethodsUsing functional near-infrared spectroscopy (fNIRS) 4- to 5-year-olds (N = 116) and their mothers completed the DB-DOS:BioSync while assessing neural synchrony during mild frustration and recovery. Child irritability was measured using a latent irritability factor that was calculated from four developmentally sensitive indicators.ResultsBoth the mild frustration and the recovery contexts resulted in neural synchrony. However, less neural synchrony during the recovery context only was associated with more child irritability.ConclusionsOur results suggest that recovering after a frustrating period might be particularly challenging for children high in irritability and offer support for the use of the DB-DOS:BioSync task to elucidate interpersonal neural mechanisms of developmental psychopathology.
| S-EPMC7247953 | biostudies-literature
Project description:ObjectiveUsing structural equation modeling, test a conceptual model of associations between constructs predicting parent and child asthma quality of life.MethodsChildren with a confirmed asthma diagnosis and their parents completed measures of health status and independently reported on psychological functioning, family functioning, and quality of life.ResultsMeasurement and structural models for predicting parent and child quality of life provided a good fit of data to the conceptual model. Parent and child independent reports of quality of life are dependent upon family functioning and child psychological functioning. Long-term asthma symptom control is the only health status variable that impacts quality of life.ConclusionsWith minor modifications, both parent and child data fit the conceptual model. Child psychological functioning and long-term asthma control jointly contribute to quality of life outcomes. Findings suggest that both acute and long-term asthma health status outcomes have different determinants.
| S-EPMC2924120 | biostudies-literature
Project description:ObjectiveThis study aims to explore the influence of dyadic coping (DC) on the quality of life (QoL) of spousal caregivers for patients with cervical cancer and to investigate the mediating role of self-efficacy in this relationship.MethodsA convenience sample of 206 spouses of cervical cancer patients from five hospitals in Jiangsu Province, China, was included in the study. The participants completed three instruments: the 12-item Short-Form Health Survey, the General Self-Efficacy Scale, and the Dyadic Coping Inventory. Structural Equation Modeling (SEM) was used to analyze the mediating effect of self-efficacy in the DC and QoL relationship.ResultsThe study found a positive correlation between self-efficacy and DC. Self-efficacy partially mediated the impact of DC on QoL, accounting for 16% of the total effect. Self-efficacy played a mediating role in facilitating the indirect positive effects of DC on QoL.ConclusionsSpousal caregivers of cervical cancer patients frequently experience a relatively low QoL. The results suggest that interventions aimed at enhancing DC among spousal caregivers should incorporate strategies to improve self-efficacy, given its mediating role in the positive relationship between DC and QoL.
| S-EPMC10904169 | biostudies-literature