Search

Objective: To examine the relationship between affiliate stigma, stress, and perceived quality of life among parents of children with cerebral palsy (CP). Method: Surveys (Study 1) and semi-structured interviews (Study 2) were used to collect data. Thirtyeight respondents completed the Affiliate Stigma Scale (ASS), Caregiver Burden Inventory (CBI), and Carerelated Quality of Life (CarerQol) scales (GMFCS). Eleven respondents took part in semi-structured interviews, which were then thematically evaluated. Results: Parents did not feel stigmatized because they had a child with CP. However, parents needed some form of short-term relief from caregiving. After controlling for demographics, high stress respondents experienced high affiliate stigma whereas low stress respondents had better quality of life. Although the respondents with less stigma had a better quality of life, this effect was moderate. Three major themes emerged from the interviews. Conclusion: Counseling, support groups, and helper services should be offered to parents. Also, healthcare professionals participating in CP rehabilitation, community-based rehabilitation, and health institutions should be educated on how to better help parents of children with CP. [ABSTRACT FROM AUTHOR]

During the diagnostic evaluation period for autism or intellectual disability (ID), families of young children are at risk for poor adjustment. The present study aimed to document family quality of life (FQOL), along with associated risk and protective factors, during this critical step of families' services trajectory. FQOL was measured in a large sample of families of children recently diagnosed with a neurodevelopmental disorder and examined in relation to the type of services received, children's clinical profile, and family variables. FQOL was related to types of services, children's challenging behavior, parenting stress, and several aspects of family composition and status. These findings highlight a need for mental health support for parents, coaching interventions for challenging behaviors, and family-centered supports. [ABSTRACT FROM AUTHOR]

Introduction: Concerns about the quality of life (QoL) of parents of children with autism spectrum disorder have been raised by previous study. Policy decision-makers and healthcare professionals can be better informed about the environmental factors associated with parental QoL, which will enhance outcomes for both parents and children. The objective of this review is to perform a comprehensive review that assesses the environmental relevant factors associated with quality of life (QoL) of parents of ASD children (under 18 years old). Methods: To identify the environmental factors associated with parental QoL, a scoping review was conducted using the Arksey and O'Malley original and enhanced framework. Three electronic database (PubMed, Scopus & WOS) and reference list checks were used in the search. Results: Social support, family support, residential condition, and access to services were all factors linked to the parental quality of life in this group. Conclusions: The review highlighted environmental factors as one of the variables that have an association with parental QoL. The results of this analysis also highlighted potential areas of support that have implications on future policy and practices. [ABSTRACT FROM AUTHOR]

Objective: To analyze the quality of life of family caregivers of patients under hemodialysis and the existence of an association with their sociodemographic and clinics characteristics. Methods: This is a cross-sectional study conducted with 75 family caregivers in two hemodialysis centers. Caregivers' quality of life was measured using the World Health Organization Quality of Life – BREF instrument, and its association with sociodemographic characteristics was assessed using the Kruskal-Wallis test (significance level equal to 5%). Results: Most family caregivers were women (84%), spouses (41.3%), children (38.7%), housewives (38.7%) and had a family income of one to three minimum wages (85.4 %). The variable working outside the home had a positive influence on overall quality of life (p=0.014), psychological domains (p=0.009) and social relationships (p≤0.001). Being male (p=0.016), not having diseases (p=0.002) and not using medications (p=0.007) positively interfered with the physical domain. The absence of financial help from other people and/or family members had a negative influence on the social relationships (p=0.050) and environment (p=0.001) domains. Conclusion: Male family caregivers, or those who work outside the home or receive financial help from other people and/or family members had better quality of life levels. On the other hand, clinical conditions such as using a drug or having diseases have negatively influenced quality of life levels. [ABSTRACT FROM AUTHOR]

Purpose: Social support is associated with breast cancer survivors' health-related quality of life (HRQoL). More nuanced information is needed regarding aspects of social support associated with different HRQoL domains among diverse populations. We assessed the association between emotional/informational and tangible support and five HRQoL domains and evaluated race as an effect modifier.Methods: African American and White women (n = 545) diagnosed with hormone-receptor-positive breast cancer completed a survey that assessed sociodemographic, clinical, and psychosocial factors. We assessed bivariate relationships between emotional/informational and tangible support along with overall HRQoL and each HRQoL domain.We tested interactions between race and emotional/informational and tangible social support using linear regression.Results: The sample included African American (29%) and White (71%) breast cancer survivors. Emotional/informational social support had a statistically significant positive association with emotional well-being (β = .08, p = 0.005), social well-being (β = 0.36, p < 0.001), functional well-being (β = .22, p < .001), breast cancer concerns (β = .16, p = 0.002), and overall HRQoL (β = .83, p < .001). Similarly, tangible social support had a statistically significant positive association with emotional well-being (β = .14, p = 0.004), social well-being (β = .51, p < .001), functional well-being (β = .39, p < .001), and overall HRQoL (β = 1.27, p < .001). The interactions between race and social support were not statistically significant (p > 0.05).Conclusions: Results underscore the importance of the different social support types among breast cancer survivors, regardless of survivors' race.Implications For Cancer Survivors: Population-based interventions can be standardized and disseminated to provide guidance on how to increase emotional/information and tangible support for all breast cancer survivors by caregivers, health providers, and communities. [ABSTRACT FROM AUTHOR]

Down Syndrome (DS) is the most common chromosome abnormality and the most frequent cause of developmental delay/intellectual disabilities in children. Although the investigation of the quality of life (QoL) is crucial in children with DS, relatively poor attention has been paid to this topic. The current study aimed to evaluate parent-reported QoL in a group of children with DS and identify children’s individual and clinical features associated with different levels of QoL. We included in the study 73 children with DS (5–12 years) and investigated the parent-reported levels of QoL by means of the Pediatric Quality of Life Inventory. Cognitive level and the presence of behavioral difficulties were also evaluated. The overall parent-reported QoL of children with DS was high; emotional functioning was the domain with the highest level of QoL. Moreover, parents perceived low levels of QoL in children who exhibited low IQ, worse analogical reasoning, worse adaptive skills, more frequent challenging behaviors, more ritualistic/sameness behavior and more autistic symptoms. No differences emerged for family variables, namely parental education and employment, between the two groups with high and low QoL, as perceived by parents. The understanding of cognitive and behavioral factors - such as analogical reasoning, socio-communication abilities and challenging behaviors - related with different degrees of QoL in children with DS is crucial for the development of effective strategies to promote the improvement of the QoL. [ABSTRACT FROM AUTHOR]

Background: Anxiety, depression, and reduced quality of life (QOL) are common problems for hospice family caregivers, but it is unknown if disparities in these experiences exist among Black and White caregivers. Objectives: To compare anxiety, depression, QOL, caregiver burden, and perceptions of caregiver-centered hospice team communication between Black and White hospice family caregivers. Design: Secondary analysis of baseline data from two randomized clinical trials. Setting/Subjects: Seven hundred twenty-two Black and White hospice family caregivers ages 18+ from Midwestern and Northeastern United States. Measurements: Measures included the Generalized Anxiety Disorder-7 (GAD-7), Patient Health Questionnaire (PHQ-9), Caregiver Quality-of-Life Index–Revised (CQLI-R), Zarit Burden Interview (ZBI-7), and Caregiver-Centered Communication Questionnaire (CCCQ). Results: Black and White caregivers differed across demographic and socioeconomic variables. Nearly one-third of hospice family caregivers reported moderate-to-severe anxiety (32.1%) and moderate-to-severe depressive symptoms (32.0%). White caregivers reported lower QOL than Black caregivers (p = 0.04), specifically in emotional (p = 0.02) and social (p = 0.0005) domains. In multiple regression analyses controlling for caregiver and patient factors, we found no racial differences in depression, anxiety, QOL, caregiver burden, or perceptions of caregiver-centered hospice communication. Conclusions: Despite demographic and socioeconomic differences, Black and White hospice family caregivers experience similarly high levels of anxiety, depression, burden, and perceptions of hospice communication. Interventions to support hospice family caregivers across racial groups and research that identifies factors that mediate social determinants of health in this population are needed. The development and validation of culture-concordant mental health screening tools in racially diverse populations is recommended. Trial registration: ClinicalTrials.gov NCT02929108 and ClinicalTrials.gov NCT01444027. [ABSTRACT FROM AUTHOR]

Objective: The aim of the present study is to investigate whether parenting stress mediate the relationship between social support and quality of life in parents of children with Autistic Spectrum Disorder. In addition, we examined what other variables moderate the relationships in this mediation model. Methods: Using the two-stage meta-analytic structural equation modeling approach (MASEM), 44 correlation matrices were synthesized from 28 empirical studies (N = 13,270) and fitted to the hypothesized mediation model. Results: There is a significant partial mediation effect of parenting stress on the relationship between social support and quality of life. Subgroup analysis through the first stage analysis suggested that social support measurements, parental role, and child's age moderated the relationship between social support and parenting stress, and that the focus of quality of life moderated the relationship between social support and quality of life. Subgroup analysis through the second stage analysis indicated that parenting stress had a significantly stronger predictive effect on quality of life in Western culture, while the predictive effect of social support on quality of life was significantly stronger in Eastern culture. Conclusion: Having more social support can reduce parents' stress and then improving their quality of life, which can help them cope more positively and effectively with their autistic children. [ABSTRACT FROM AUTHOR]

Copyright of Acta Paulista de Enfermagem is the property of Universidade Federal de Sao Paulo, Escola Paulista de Enfermagem and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

This paper reported the quality of life (QoL) of 260 Malaysian parents with autism spectrum disorder (ASD) and factors which influencing it. About half of these parents reported to having good QoL. The factors identified in the double ABCX model showed that perceived social support and sense of coherence (SOC) were mediated by coping strategies and had a positive direct and indirect effect on parents' QoL. These finding reiterate the importance of social support, coping skills, and strong SOC reflection skills in influencing the QoL of parents with ASD child. We therefore suggest parents to utilize the widely available social and organization supports to gain good QoL, which is also important for the wellbeing of their child. [ABSTRACT FROM AUTHOR]

Background: Most autism spectrum disorder (ASD) interventions evaluated child outcomes and ignoring the role of parent and family factors on both the immediate- and long-term effects of therapy. The purpose of this study was to determine the relationship between stigma, parent mental health problems, and quality of life and burden in families of children with ASD in Egypt and its risk factors. Seventy parents of ASD children were recruited from two child intervention centers. Participants were divided into two groups based on burden scale: caregivers of moderate burden (n = 27) and caregivers of severe burden (n = 43). All parents were evaluated for demographic data, zarit Burden Interview, socioeconomic scale, symptom checklist–90 (SCL90), Explanatory Model Interview Catalogue Community Stigma Scale (EMIC-CSS), and the World Health Organization Quality of Life–BREF (WHOQOL-BREF). Results: Half of the parents reported significant stigma, particularly caregivers with a severe burden. Caregivers with severe burden had more depression and about twice the frequency of sensitivity and somatization problems, lower QoL (20%) as compared with caregivers with moderate burden. Parents with ASD had many associate factors such as work, male autistic children and their caregiver, age of children and parents, the severity of the condition, and disease duration with burden, stigma, QoL, and mental health problems. Conclusions: This study linked the interrelationships between increased burden and stigma, impaired quality of life, and parental mental health problems; the presence of one of these variables was found to increase the risk of other variables. [ABSTRACT FROM AUTHOR]

Background: Family caregivers of hemodialysis patients are the first and most crucial source of care at home. They experience many problems in the care of hemodialysis patients, which can affect their quality of life and hope, affecting the quality of care provided to patients. This study aimed to determine the relationship between quality of life and hope in family caregivers of hemodialysis patients.Methods: A cross-sectional (descriptive-analytical) study performed on 300 family caregivers in the east of Mazandaran province in Iran. Data were collected using the Family Caregiver Quality of Life (FQOL), SF8 and adult hope scale. Data analysis was performed in SPSS version 16, and a P-value of below 0.05 was considered statistically significant.Results: The results showed that, there was a direct and significant relationship between hope and quality of life. However, the quality of life was significantly lower in suburban residents, the unemployed, spouses, people with lower education and income levels, caregivers who cannot leave their patients alone, those living with their patients in the same house, and those taking care of male patients, compared to other participants (P < 0.05). Suburban residents, the unemployed, people with an insufficient level of income, and those living with their patients in the same house had significantly lower hope, compared to other subjects.Conclusion: Since an increase of hope and quality of life of caregivers can cause improved quality of patient care, it is recommended that hope-based educational programs and interventions be implemented for caregivers. [ABSTRACT FROM AUTHOR]

This systematic review summarises the parenting intervention literature for parents of children who have a sibling with a chronic health condition, and evaluates intervention efficacy for improving parent (parenting skills, parenting efficacy) and child (emotional and behavioural adjustment, condition knowledge, quality of life) outcomes. Electronic databases were searched to identify relevant papers published in English from inception until May 2020. Reference lists of eligible papers were further searched for relevant articles. Six papers (two controlled trials, four uncontrolled trials) evaluating four separate intervention programs met inclusion criteria. All included parent- and child-focused intervention components. Results showed an overall trend for pre- to post-intervention improvement in children's behavioural and emotional adjustment and health condition knowledge. Few studies examined effects on parent outcomes, and there was no evidence of change on these measures. Overall, results suggest that parenting interventions may help to improve siblings' emotional and behavioural adjustment and condition knowledge; however, all of the interventions combined parent- and child-directed intervention components, making it difficult to determine which intervention elements drive change. Further research is needed to test mechanisms by which parenting interventions may improve outcomes for siblings of children with chronic health conditions, and to establish the efficacy of this approach. [ABSTRACT FROM AUTHOR]

Introduction: The aim of the present study is to carry out a multidimensional analysis of the relationship of social support with quality of life and the stress perceived by cancer patients. Methods: The participants were 200 patients with cancer. Data was gathered on sociodemographic characteristics, health, quality of life, social support and perceived stress. Results: Frequency of and satisfaction with different sources and types of support are related positively with improvement of quality of life and negatively with perceived stress. The emotional support from the partner and the emotional and informational support from the family are significant predictors of quality of life. Emotional support from the family reduces patients' perceived stress. Satisfaction with emotional support from the partner and with the informational support from friends and family increases quality of life. Satisfaction with emotional support from the family and with informational support from friends decreases patients' perceived stress. Instrumental support and support provided by health professionals are not good predictors of quality of life and perceived stress. Satisfaction with the support received is more significantly related with quality of life and stress than the frequency with which the sources provide support. Conclusions: These results have important practical implications to improve cancer patients' quality of life and reduce their perceived stress through social support. Designing intervention strategies to improve satisfaction with the support provided to patients by their closest networks results in a global benefit for the patient's quality of life. [ABSTRACT FROM AUTHOR]

Background: Long-term use of adjuvant endocrine therapy (AET) among women with early-stage, hormone receptor-positive breast cancer significantly reduces the risk of hospitalizations, cancer recurrence, and mortality. AET is associated with adverse symptoms that often result in poor adherence. A web-enabled app offers a novel way to communicate and manage symptoms for women on AET. In a region with significant racial disparities in breast cancer outcomes, our study tests the impact of a web-enabled app that collects and transmits patient-reported symptoms to healthcare teams to facilitate timely and responsive symptom management on medication adherence.Methods: In this randomized controlled trial, we randomize 300 patients initiating AET to one of three arms: 1) an "App" group (n = 100) that receives weekly reminders to use the THRIVE study app; 2) an "App+Feedback" group (n = 100) that receives weekly reminders and tailored feedback based on their use of the app; or 3) a "Usual Care" group (n = 100) that receives usual care only. Participants are stratified by race: 50% White and 50% Black. The duration of the intervention is six months following enrollment, and outcomes are assessed at 12-months. The primary outcome is adherence, which is captured using an electronic monitoring pillbox. Secondary outcomes include symptom burden, quality of life, self-efficacy for managing symptoms, and healthcare costs. We also evaluate the impact of the intervention on racial disparities in adherence. Data are derived from three sources: electronic health record data to capture treatment changes, healthcare utilization, and health outcomes; self-report survey data related to adherence, symptom burden, and quality of life; and an electronic medication monitoring device that captures adherence.Discussion: A successful web-enabled intervention could be disseminated across systems, conditions, and populations. By evaluating the impact of this intervention on a comprehensive set of measures, including AET adherence, patient outcomes, and costs, our study will provide valuable and actionable results for providers, policy makers, and insurers who strive to achieve the "Triple Aim" - reduce costs while improving health outcomes and the patient care experience.Trial Registration: NCT03592771. Prospectively registered on July 19, 2018. [ABSTRACT FROM AUTHOR]

Purpose: The level of support needed for adaptive functioning and behavioral problems of individuals with intellectual disabilities (ID) can be a source of stress for caregivers. The aim of this study was to explore the moderating role of caregivers' age on the associations between these stressors and quality of life (QoL) of the family caregivers. As these sources of stress in people with ID can coexist, the triple interaction between stressors and age was also examined.Methods: 208 relatives (mean age = 50.98 years, SD = 12.86) of people with ID participated in the research. Participants answered a questionnaire with sociodemographic variables, measures of stressors (level of support for adaptive functioning of the people with ID and behavioral problems) and measures of QoL (WHOQOL-BREF).Results: The association between the level of support needed for adaptive functioning and lower QoL was only significant among older relatives, whereas the association between behavioral problems and lower QoL was only significant among younger relatives. A three-way interaction between behavioral problems, level of support needed, and age indicated that the association between the level of support for adaptive functioning and QoL in older relatives was greater when there were higher levels of behavioral problems.Conclusions: The role of caregivers' age in their QoL differs depending on the nature of the stressor, and an accumulation of stressors can have a particularly negative impact on older caregivers. Interventions should be adapted for caregivers of different ages and take into account the particular sources of stress they have to cope with. [ABSTRACT FROM AUTHOR]

To deal with stress, parents of children with ASD use coping strategies that help to tackle the challenging situations of raising their child. This systematic review examines parental coping strategy's questionnaires, factors which influence these coping strategies, interactions between these strategies and perceived stress and their impact on parental quality of life. According to PRISMA guidelines, an electronic search was conducted on Medline, PsycInfo and Eric: 156 articles were identified and 11 studies were selected. Many types of self-reported questionnaires were used to assess parental coping strategies. Studies highlighted that parents of a child with ASD used more avoidance strategies and less social support-seeking strategies than those of typical children. Furthermore, problem-focused coping protects parental stress and quality of life, that on the contrary, emotion-focused coping is a risk factor for alteration. Our systematic review illustrates the need to adapt psychoeducational interventions for parents of children with ASD. [ABSTRACT FROM AUTHOR]

Background: Young people with Down syndrome experience varying abilities in activities of daily living, cognitive functioning, behaviour and social skills. The aim of this research was to investigate, from a carer’s perspective, the factors that influenced the quality of life of these young people. Methods: Families of young people with Down syndrome (n = 197), aged 16–31 years, living in Western Australia, took part in a questionnaire study regarding young person daily functioning, family characteristics, medical background and quality of life measured by the Kidscreen 27-item scale. Kidscreen-10 total score was used as an outcome in the investigation of determinants with higher scores indicating better quality of life. Results: After adjustment for confounders including carer’s mental health measured by the Depression and Anxiety Scale (DASS), global impact of illness as well as impact of mental health and bowel conditions were all negatively associated with the young person’s quality of life. Young people who had three or more friends had better quality of life than those with no friends. Scores were lower (reflecting poor quality of life) in individuals who had more behavioural problems but these relationships were attenuated after adjustment for confounders and DASS. Conclusions: Overall, our findings revealed that quality of life of young people with Down syndrome was most negatively associated with burden of medical conditions, but also with lack of friendships. We were somewhat surprised to find the effect of medical problems on quality of life persisting into adolescence and adulthood where in general the burden of medical comorbidities is much less than in childhood. [ABSTRACT FROM AUTHOR]

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Coping with the stress and anxiety caused by end stage kidney disease (ESKD) symptoms, treatment, restrictions, and social, financial and family stressors, consumes many afflicted with kidney disease. Meditation has been shown to decrease anxiety and stress, and improve wellbeing and quality of life of people with chronic disease. However, the clinical uptake of meditation is low in the ESKD dialysis population. This review describes what meditation and mindful meditation are and how they have been used for people with ESKD. Further research, using active control conditions and larger sample size, is required to identify effective meditation interventions that can improve the wellbeing of our patients and their ability to cope with the demands of ESKD. [ABSTRACT FROM AUTHOR]

This study investigated the psychometric properties of the Child and Family Quality of Life scale, a measure of psychosocial quality of life in those with autism and related developmental disorders. Parents of 212 children suspected of autism spectrum disorder completed the Child and Family Quality of Life prior to a diagnostic evaluation. Results indicated that the Child and Family Quality of Life measured six unique quality-of-life constructs (child, family/caregiver, financial, external support, partner relationship, and coping), had good reliability across score ranges and exhibited expected patterns of convergent validity. Caregivers of autism spectrum disorder–affected children reported reduced family quality of life prior to the time of diagnosis relative to caregivers of children with other developmental disabilities. The Child and Family Quality of Life is a brief, reliable measure for assessing psychosocial quality of life in families affected by developmental disability. This study is the first to demonstrate impairments in family quality of life early in the developmental course of autism spectrum disorder, prior to formal diagnosis. In addition to traditional child-focused intervention strategies, families with autism spectrum disorder–affected children require early, broad intervention strategies that positively impact the whole family. [ABSTRACT FROM AUTHOR]

Copyright of Prävention und Gesundheitsförderung is the property of Springer Nature and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Purpose: To assess the quality of life (QoL) of caregivers of children with sickle cell disease (SCD) and to determine the risk factors associated with poor QoL.Method: A cross sectional study was conducted between 01 and 30 June 2015, in a tertiary care center in western Saudi Arabia to assess various dimensions of QoL by using TNO-AZL Questionnaire for Adult's Health-related Quality of Life (TAAQOL). A total 164 adult caregivers (aged 16 years or more) of children with SCD, who were regularly visiting the department were enrolled (refusal rate = 61.6%). The questionnaire scores were transformed into 0-100 scale; with higher scores indicating less difficulty and better QoL Demographic, socioeconomic data and a satisfaction questionnaire regarding participants' lifestyle were collected and analyzed as risk factors for impaired QoL, by comparing different QoL dimensions' scores using independent t-test, Oneway ANOVA, or linear regression, as appropriate.Results: Sixty-three caregivers were included; 79.4% were mothers, age range 21-71 years, 64.5% were from low social class receiving insufficient support and financial needs were unmet for considerable number of families. Analysis of QoL using TAAQOL showed that emotions (median [75th centile] = 44.44 [66.67] for negative and 61.11 [72.22] for positive emotions), sleep quality (66.67 [91.67]) and sexual life (50.00 [83.33]) were the most affected dimensions. Professional achievement (91.67 [100]), cognitive skills (83.33 [100]), and social contact (100 [100]) were relatively preserved. Negative emotions were more marked in mothers and mostly predicted by satisfaction with social relations notably with partner (B = 3.14, p = 0.016), friends (B = 2.51, p = 0.015) and relatives (B = 2.69, p = 0.016). Positive emotions were predicted by the levels of satisfaction of the caregiver with his/her health (B = 2.56, p = 0.001), job achievement (B = 4.54, p = 0.001), living conditions (B = 2.60, p = 0.034) and the condition of the diseased child (B = 2.55, p = 0.011). A strong correlation was found between sleep quality and cognitive skills.Conclusion: There are notable financial and emotional burdens on the caregivers of children with SCD affecting various aspects of their QoL, which are likely to be impacted by the individual levels of social and professional achievement. Physicians and health authorities should give particular attention to the QoL of caregivers and families of children with SCD, to help them cope up with the disease and overcome its related psychological and financial impacts. [ABSTRACT FROM AUTHOR]