Portuguese Validation of FACES-IV in Adult Children Caregivers Facing Parental Cancer

The purpose of the present study was to examine the psychometric properties of the FACES-IV in Portuguese caregivers of cancer patients. In this cross-sectional study, a sample of 214 adult children caregivers of cancer patients receiving chemotherapy, completed FACES-IV, Family Communication Scale (FCS), Family Satisfaction Scale (FSS), and Satisfaction with Social Support Scale (SSSS). Internal consistencies above .70 were found for all FACES-IV scales, except for Enmeshed and Rigid scales, as well as for the FCS, FSS, and SSSS (except for Intimacy). Strong correlations between FACES-IV and the validation scales FCS and FSS were found except for the Enmeshed and Rigid scales. Confirmatory analysis yielded an acceptable model for the six theoretical subscales. The discriminant analysis between problematic and non-problematic family systems showed results similar to the original study. These findings suggest that FACES-IV is a valid measure of family functioning in oncological family caregiving’s contexts.     

Correction to: Quality of Life among Caregivers of Children with Autism Spectrum Disorders,Intellectual Disability,and Typical Development

Applied Research in Quality of Life - A Correction to this paper has been published: https://doi.org/10.1007/s11482-020-09896-1     

The Impact of Ethnicity,Language, and Anxiety on Quality of Life in Children with Cancer

Undergoing cancer treatment significantly impacts quality of life (QOL). This study evaluated the role of anxiety, ethnicity, and language on QOL in children with a cancer diagnosis. Participants included 156 parent–child dyads in 3 groups: English-speaking Hispanic, Spanish-speaking Hispanic, and English-speaking non-Hispanic White. Parents completed measures of self-reported anxiety and their children’s perceived QOL. Children completed self-reported measures of anxiety and QOL. Families in which parents primarily spoke English reported higher parent-reported generic-module QOL (p?=?0.0062), higher parent-reported cancer-specific QOL (p?=?0.004), lower parent trait anxiety (p?=?0.0005)), and lower child trait anxiety (p?=?0.013), compared to families in which parents primarily spoke Spanish. Regression analyses were strongly supportive of a mediational role of parent trait anxiety in the association of ethnicity/language and parent-reported QOL. The results of this study suggest that children of Spanish-speaking parents may be at greater risk of decreased quality of life, as a function of increased parental anxiety.     

Predicting Quality of Life After Lumbar Spondylodesis

Quality of life after spondylodesis was predicted by pretreatment psychological variables and findings in a standardized physical examination. Four quality-of-life criteria were used: functional capacity, vocational rehabilitation, satisfaction with the outcome of the operation, and pain intensity recorded in a pain diary. Those of six presurgery variables that proved to be associated with the outcome 9 months postsurgery, by means of a multiple stepwise regression procedure, were selected for discriminant analyses. The sample consisted of 50 consecutive patients who underwent either ventral (n = 10) or posterolateral (n = 40) spondylodesis with or without posterior instrumentation. Their average age was 44.9 years (SD = 12.9) with an average duration of pain of 8.6 years (SD = 8.8). Nearly half of the patients had had previous spine surgery. Follow-up data indicate that about half of the patients show a beneficial outcome in terms of quality-of-life measures. Discriminant analyses suggest that poor presurgical functional capacity and an unclear finding in the physical examination before surgery contribute to our knowledge about patients who are likely to show continuous pain and poor functional capacity after surgery.     

Predicting Potentially Harmful Psychological and Physical Behaviours by Parental Caregivers toward Children with Autism Spectrum Disorder

Mistreatment of dementia patients by spousal care providers is fairly common. Caregivers’ characteristics, particularly their psychosocial, physical and cognitive functioning, and coping behaviours, predict reports of elder mistreatment. Parental caregivers of children with autism spectrum disorder (ASD) however, despite the similarities they share with dementia caregivers, have not been studied in this context. A sample of N?=?95 caregivers of children with ASD completed an online survey assessing: (a) psychosocial, physical and cognitive functioning, and (b) coping behaviours. Caregivers also: (c) rated the extent to which they used potentially harmful psychological (e.g., screamed at the child) and physical (e.g., slapped the child) behaviours to cope with caregiving challenges over the last 12 months. Rates of potentially harmful psychological and physical behaviours were extremely low. However, 95% of caregivers reported using at least one potentially harmful psychological behaviour at some point in the last 12 months, and almost 38% reported using at least one potentially harmful physical behaviour. Mediation analysis yielded an indirect effect of psychological distress on potentially harmful psychological behaviours through disengaged coping. In conclusion, rates of potentially harmful behaviours appear to be low in the context of caring for a child with ASD. Caregivers reporting increased psychological distress were more likely to use potentially harmful psychological behaviours, and this effect was partially mediated by greater use of disengaged coping.     

Stigma,Expressed Emotion,and Quality of Life in Caregivers of Individuals with Dementia

Expressed emotion (EE) is a measure of a caregiver's critical and emotionally overinvolved (EOI; e.g., intrusive, self‐sacrificing) attitudes and behaviors toward a person with a mental illness. Mounting evidence indicates that high levels of these critical and EOI attitudes and behaviors (collectively termed high EE) in family members are associated with a poorer course of illness for people with a range of disorders, including dementia (Nomura et al., 2005). However, less is known about factors that might trigger high EE and how high EE might impact dementia caregivers’ own mental health. In this study we propose that caregivers who perceive stigma from their relative's illness may be more likely to be critical or intrusive (high EOI) toward their relative in an attempt to control symptomatic behaviors. We further hypothesized that high EE would partially mediate the link between stigma and quality of life (QoL) as there is some evidence that high EE is associated with poorer mental health in caregivers themselves (Safavi et al., 2015). In line with study hypotheses and using a sample of 106 dementia caregivers, we found that greater caregiver stigma was associated with both high EE (for criticism and EOI) and with poorer QoL. Mediational analyses further confirmed that high EE accounts for much of the association between stigma and poorer QoL. Study results suggest that addressing caregiver stigma in therapy could reduce levels of high EE and indirectly therefore improve caregiver QoL. Intervening directly to reduce high EE could also improve caregiver QoL.     

Health Related Quality of Life in Children with Congenital Heart Disease

Health-related quality of life in children with congenital heart disease (CHD) was compared to that of healthy children. Furthermore, agreement between child and parent reports was examined. In addition, differences in quality of life related to the severity of CHD were evaluated. One hundred children with CHD aged between 8-18 years and their parents answered a health-related quality of life-questionnaire during their visit to the paediatric cardiology outpatient department. CHD children reported reduced motor functioning and autonomy compared to healthy children. Parents of children with CHD reported their children to have a reduced quality of life in the domains of: motor functioning, autonomy and cognitive functioning. Agreement between child and parent reports was moderate. Children systematically reported lower health related quality of life on the domain of positive emotions than did parents. Health related quality of life in children with CHD appeared not to be influenced by severity of the disease. In conclusion, regardless of the severity of the disease, children with CHD reported their health related quality of life on several domains to be lower than that of healthy children. This means that on several domains, the emotional impact of problems in health status is greater for children with CHD than for healthy children. When CHD patients visit the clinic, it is important that physicians actively ask patients as well as parents about the child's motor functioning, autonomy and cognitive functioning. Children with problems in these domains can then be identified, and psychological interventions can take place at an early stage.     

五种干预措施对癌症儿童主要照顾者心理韧性影响的网状Meta分析

采用网状Meta分析评价不同干预措施对癌症儿童主要照顾者心理韧性的影响。检索国内外数据库自建库至2021年8月公开发表的癌症儿童主要照顾者心理韧性干预的相关文献,共纳入6项研究,涉及5种干预措施,合计327例癌症儿童主要照顾者。研究结果表明,自我表露干预（MD=29.08,95%CI：16.35～41.24）、同伴教育干预（MD=23.58,95%CI：9.80～37.43）与常规护理相比有统计学意义（P＜0.05）,其排序的优劣顺序为：自我表露干预、同伴教育干预、同伴支持干预、自我同情训练、常规护理、压力管理干预。目前证据表明,自我表露干预可能是提高癌症儿童主要照顾者心理韧性的最优干预措施,但还需大样本临床研究证实。

     

The Role of Contextual Threat in Predicting Self-Reported Distress among Siblings of Children with Cancer

Each year, 14,000 children are diagnosed with cancer in the United States. Prolonged, intensive treatment regimens disrupt the entire family system, but effects on siblings are poorly understood. In this preliminary investigation, we employed a risk and resistance framework to study adjustment among 30 siblings (aged 10–17) of children undergoing cancer treatment. We examined whether or not objective stress associated with the cancer experience (contextual threat) predicted sibling distress and explored demographic and disease-related predictors of sibling adjustment. Contextual threat was positively associated with sibling-reported distress, independent of sibling age, gender, birth order relative to the child with cancer, and cancer treatment intensity. From among the demographic and disease-related factors, only younger birth order relative to the child with cancer was independently associated with sibling distress. These results suggest that a subset of siblings may be at increased risk for elevated distress in the face of their brother’s or sister’s illness.     

A Comparison of Mood and Quality of Life Among People with Progressive Neurological Illnesses and Their Caregivers

The current study was designed to investigate differences in mood and a range of QOL domains among 423 patients and 335 caregivers of people with motor neurone disease (MND), Huntington’s disease (HD), Parkinson’s, and multiple sclerosis (MS). Patients and caregivers completed an anonymous questionnaire that evaluated their mood (anxiety, depression, fatigue, confusion) and QOL (physical, psychological, social, environment). The results demonstrated that caregivers of people with MND and HD experienced most problems with their mood and QOL compared to caregivers of people in the other illness groups. There were few differences in mood or QOL between patients and caregivers. Patients generally showed greater confusion, physical impairment, and psychological maladjustment. The findings suggest that educational and intervention programs need to be developed to help both patients and their caregivers to adjust and cope with these illnesses, particularly caregivers of people with MND and HD.     

癌症患者生存质量研究进展

随着癌症患者生存时间和生存人数的增加,生存者本人和家属更加重视生存质量。本文总结分析近年来国内外癌症患者生存质量的研究状况,以期在癌症治疗过程中,不仅关注躯体功能和疾病本身以及由治疗带来的症状和体征,同时注重心理和社会职能。     

癌症患者生存质量研究进展

随着癌症患者生存时间和生存人数的增加,生存者本人和家属更加重视生存质量.本文总结分析近年来国内外癌症患者生存质量的研究状况,以期在癌症治疗过程中,不仅关注躯体功能和疾病本身以及由治疗带来的症状和体征,同时注重心理和社会职能.     

癌症病人的生活质量及心理干预研究

本研究在前期研究的基础上进一步探讨癌症病人的生活质量状况和心理干预的效果。运用病例对照实验设计 ,选用生活质量问卷 (QLQ C3 0 )作为主要测查工具 ,采用两因素混合实验方差分析统计方法 ,对 1 2 0名住院化疗病人进行了比较分析。结果显示 :躯体功能 (PF)、角色功能 (RF)、情绪功能(EF)、认知功能 (CF)和整体生活质量 (QL)得分在治疗前后和实验与对照组之间的交互作用均显著和非常显著 ;症状量表和单项症状中交互作用显著和非常显著的有 :疲乏 (FA)、呼吸困难 (DY)、失眠 (SL)、食欲丧失 (AP)。因此 ,化疗对病人的生活质量有明显的影响 ,经心理干预后癌症病人的各种功能状况和症状得到不同程度的改善。     

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.     

Quality of Life among Caregivers of children with Autism Spectrum Disorders,Intellectual Disability,and Typical Development

Applied Research in Quality of Life - The quality of life (QoL) of the caregivers of children with autism spectrum disorder and intellectual disabilities has received limited attention in emerging...     

Children of Incarcerated Mothers and Their Caregivers: Factors Affecting the Quality of Their Relationship

We examined the quality of the relationship between children of incarcerated mothers and their kinship caregivers, to investigate whether perceived levels of warmth and acceptance were related to assessments of the children's behaviors. The sample consisted of 69 children (6 to 12 years) with currently incarcerated mothers who attended a recreational summer camp, and 25 of their caregivers. Children who felt lower levels of warmth and acceptance from their caregivers self-reported greater internalizing and externalizing behaviors. Caregivers' warmth and acceptance toward the children was lower when they assessed the children's behavior as difficult and the caregivers' parenting stress was high.