Direct Parenting Methods to Facilitate the Social Functioning of Children with Cerebral Palsy

Studies with typically developing children have supported the efficacy of parents’ direct efforts to facilitate social development. In this study, it was hypothesized that use of direct parenting methods would be associated with aspects of social functioning of children with cerebral palsy. Study participants were 60 children with cerebral palsy, ages 5–12 (M = 8.75; SD = 1.82), 62.3% male and their parents or guardians. Direct parenting methods were assessed with a modified empirically validated survey strategy. In contrast with findings from the typically developing population, there were no significant associations between direct parenting methods and children’s social functioning. Findings suggest the need to develop alternative models of multidimensional influences on social development of children with cerebral palsy.     

Temperament as a predictor of internalising and externalising problems in adolescent children of parents diagnosed with cancer

Objective This study examined the relationship between temperament and internalising and externalising problems among children of parents diagnosed with cancer, beyond the effects of socio-demographics, illness-related variables and life events. Materials and methods Three hundred and forty adolescent children and their 212 parents diagnosed with cancer participated. Children and parents completed the Youth Self Report and the Child Behaviour Checklist, respectively. Children completed also the Early Adolescent Temperament Questionnaire. Main results Daughters of parents with cancer were reported as having more internalising problems than their counterparts did. Prevalence of problems did not depend on children’s and parents’ age or educational level. Recurrent disease and number of life events experienced by children and parents affected the problems reported. The most important temperament dimensions in the prediction of internalising problems in children were shyness and fear/worry, to a lesser extent, frustration and perceptual sensitivity (children only) and lower scores on pleasure intensity (parents only). Externalising problems were associated with effortful control and in children’s reports with frustration. Temperament seemed to be a more important predictor of problems reported by children than parents. Conclusion Findings suggest that temperament is useful in determining the relative vulnerability of children of parents who have been diagnosed with cancer. Social workers may help parents to recognise individual differences between children and to support children by using techniques that are compatible with the temperament of children.     

The Efficacy of a Pilot Prevention Program for Children and Caregivers Coping with Economic Strain

Poverty and economic stress are risk factors for child psychopathology; however, primary and secondary control coping can buffer children against the negative effects of these risks. A 4-week (12 h) pilot prevention program aimed at enhancing coping skills and preventing symptoms of psychopathology among children growing up in poverty was evaluated using a multiple baseline design. Participants were 24 children (ages 8–12) and their primary caregivers. Attrition was low and parent-reports of program satisfaction were high. Children’s ability to generate positive coping thoughts and high quality solutions to problems improved from pre- to post-intervention. At the post-intervention measurement, parents’ and children’s involuntary engagement stress responses had declined and parents’ secondary control coping had increased. Children’s internalizing and externalizing symptoms also decreased from pre- to post-intervention, according to parent-reports. Results provide preliminary evidence for the feasibility and efficacy of the intervention.     

Locus of Control,Perceived Parenting Style,and Anxiety in Children with Cerebral Palsy

In this study we examined interrelations among locus of control (LOC), disease severity, anxiety, and parenting style (PS) in children with cerebral palsy (CP). Thirty children with CP and their 30 healthy siblings completed self-report measures of LOC, anxiety, and perceived PS of the mother. A neurological assessment determined severity of CP. Children with CP, regardless of severity, did not differ from their siblings in LOC, anxiety, or perceived PS. Multiple-regression analyses showed that LOC was predicted only by the acceptance/rejection dimension of PS in children with CP; whereas for their siblings, age, and anxiety were the best predictors. The findings suggest a central influence of the home environment on children’s psychological development. For children with CP, experiencing parental acceptance may enhance development of resilience-related qualities, such as an internal LOC.     

Relationships among parenting stress,health-promoting behaviors,and health-related quality of life in Korean mothers of children with cerebral palsy

Health-promoting behaviors have been shown to enhance the quality of life across diverse populations. In this study, we examined the indirect effects of several health-promoting behaviors on the relationship between parenting stress and health-related quality of life in mothers of children with cerebral palsy (CP). A convenience sample of Korean mothers (N = 180) of children aged 10 months to 12 years with CP was recruited from clinical and school settings. Health-promoting behaviors were measured using the health-promoting lifestyle profile II, which is comprised of six subscales: health responsibility, physical activity, nutrition, spiritual growth, interpersonal relations, and stress management. Multiple mediation analyses were conducted to examine the mediating role of these behavioral categories. Spiritual growth (β = .56, p < .05) had an indirect effect on the relationship between parenting stress and physical health-related quality of life while spiritual growth (β = −1.00, p < .01) and stress management (β = −.80, p < .05) were found to mediate the association between parenting stress and mental health-related quality of life. The findings of multiple mediation analyses provide evidence of the influence of specific health-promoting behaviors on health-related quality of life, thereby informing the development of intervention programs for mothers of children with disabilities.     

The Parenting Journey of Mothers of Young Adults with Multiple Impairments

Parenting children with cerebral palsy can impact parental health and life satisfaction but few studies have addressed parenting a young adult with multiple impairments. This mixed methods study examined 21 mothers’ well being at 2 time points; when their child with cerebral palsy was 13–22 years old and when their child was 20–30 years old. Scores on three questionnaires indicated that, on average, mothers’ life satisfaction, social support, and perceptions of family functioning did not change significantly between assessment points. Six mothers reported low life satisfaction at both time points. Qualitative analysis of semi-structured interviews at Time 2 revealed that 15 mothers reported physical and/or emotional health challenges as a result of the parenting demands. Their work choices were also affected. For most mothers, their experiences of parenting young adults with extensive impairments had influenced their views of disability, themselves, and life in a positive manner.     

Oral mucositis: a phenomenological study of pediatric patients’ and their parents’ perspectives and experiences

Goal  The purpose of this qualitative phenomenological study was to describe children’s and their parents’ lived experiences of oral mucositis (OM) and to explore their needs in relation to OM. Materials and methods  Individual semistructured interviews were conducted with 22 children who had experienced WHO grade ≥ 2 OM during chemotherapy within the previous 6 months. Parents from each family were also interviewed in the same way. Interviews were audio recorded and fully transcribed verbatim. Data were analyzed using inductive content analysis. Results  The mean ages of the children and parents were 12 and 41 years, respectively. Regarding gender, 55% of the children were boys, and 95% of the parents were mothers or grandmother. Forty-one percent of the children were diagnosed with acute lymphoblastic leukemia, and 36% were treated with methotrexate. The findings illustrated that the experience of OM impacted on the lives of the children and their parents. Five themes, which subsumed a number of categories, were constructed: “Symptoms experienced,” “Negative emotional outcomes,” “The dilemma of eating (or not eating),” “Challenges in oral care,” “Health care needs.” Mouth and throat pain were found to cause a number of severe consequences in daily life. Many children experienced turmoil characterized by a panoply of emotions. All parents described psychological distress on various levels which they attributed to the burden of care and the suffering of their children. OM can present a difficult dilemma to patients: on the one hand, children found it too painful to chew and swallow food, while on the other hand they felt very hungry. Children were aware of the significance of oral care. Discomfort associated with oral care forced some children to neglect oral care. Parents also described oral care as a stressful event for their children and for them. Children needed more activities coordinated by the ward to distract them from their OM, as well as psychological support from the health care professionals. Parents indicated the need for more information about the process of OM and food selection. Conclusion  Findings from this study illustrate the complex biopsychosocial impact of chemotherapy-induced OM on children and their parents. Optimal OM pain management guidelines and holistic supportive care strategies should be developed in conjunction with OM strategies in the future. This study was supported by the Lee Hysan Foundation Research Grant of United College of the Chinese University of Hong Kong. The abstract of this paper was partially presented at the 2nd Annual Mucositis Research Workshop of the 2008 MASCC/ISOO International Symposium, Houston, 24 to 28 June 2008.     

Quality of life of parents with children living at home: when one parent has cancer

Goals of work This study examined the quality of life (QoL) of cancer patients diagnosed 1–5 years previously and their spouses, with children 4–18 years living at home. Relationships between parents’ QoL and the children’s functioning were explored. Patients and methods 166 cancer patients and their spouses provided information on their QoL (RAND-36) and on their children’s functioning (Child Behavior Checklist). Main results Male and female patients scored similarly to a norm population on five domains. Patients’ QoL was clinically relevantly and/or statistically lower on social functioning, role limitations because of physical problems, and vitality than the norm. Male spouses’ QoL was comparable to the norm. However, female spouses reported better physical functioning but more social problems. QoL varied according to type of cancer, treatment intensity, and recurrence. Using the QoL composite scores, a significant relationship was found between patients’ psychosocial and physical functioning and spouses’ psychosocial functioning. Patients’ psychosocial functioning correlated moderately strongly to weakly with their reports of their younger children’s and adolescents’ functioning; physical functioning correlated only weakly with adolescents’ functioning. The patients’ functioning related weakly to moderately strongly to adolescents’ self-reports of functioning. Spouses’ psychosocial functioning weakly related to their and adolescents’ reports of adolescents’ functioning. Conclusions Cancer patients’ QoL 1–5 years after diagnosis was decreased in three of eight domains; their spouses seem to be doing well. Parents’ physical and psychosocial functioning related weakly to moderately strongly to their children’s functioning, depending on the child’s age and information source. The patients’ functioning related more strongly to the children’s functioning than the spouses’ did.     

The role for hip surveillance in children with cerebral palsy

Spastic hip displacement is the second most common deformity seen in children with cerebral palsy (CP), and the long-term effects can be debilitating. Progressive hip displacement leading to dislocation can result in severe pain as well as impaired function and quality of life. Recent population-based studies have demonstrated that a child’s Gross Motor Functional Classification System (GMFCS) level is most predictive for identifying hips “at-risk” for progressive lateral displacement. As a result, in many developed countries, hip surveillance has now been adopted as an integral piece of the comprehensive care puzzle for the management of children with spastic hip displacement. This paper reviews the spectrum of treatments available for progressive hip displacement, examines the current literature on the success of hip surveillance, and illustrates an example of a current hip surveillance program stratified by the GMFCS level.     

Self-generated Domains of Quality of Life in Children with and Without Cerebral Palsy

This study was conducted to demonstrate feasibility of utilizing a modified SEIQoL-DW with children by examining self-generated domains of quality of life in children with and without cerebral palsy. Study samples were children, ages 6–12, (mean 8.9, SD 1.8) including 41 children with cerebral palsy (CP) and 60 children who were age and gender matched peers without disability. Quality of life was assessed with a modified Schedule for the Evaluation of Individual Quality of Life-Direct Weight (SEIQoL-DW). Group differences in overall ratings of quality of life were not significant; however, there were significant group differences in the frequency and hierarchy of self-generated domains. Within the group with CP, functional ability was not associated with quality of life.     

Addressing spasticity-related pain in children with spastic cerebral palsy.

Children with spastic cerebral palsy (CP) often suffer pain as a result of their spasms. Some studies have suggested that the pain experienced by these children may be poorly controlled or respond poorly to treatment. Limited research is available that addresses the treatment of pain due to spasms in children. Therefore, clinicians do not have empirical evidence to guide their decisions. Many current treatment options have not been tested for their effect on pain. Previous research has been guided more by the ability of these treatments to increase functional abilities. Pain also is an important indicator of quality of life; however, this has been overlooked in research.     

Music��s relevance for pediatric cancer patients: a constructivist and mosaic research approach

Purpose  

Music is important in most children’s lives. To advance efficacious pediatric supportive care, it is necessary to understand young cancer patients’ thoughts about music. Concern about inviting unwell children to express opinions has resulted in scant research examining their views. “Mosaic” research examines children’s experiences through investigating multiple perspectives which inform a “co-constructed meaning.” This study examines pediatric cancer patients’ and their parents’ perspectives about music and music therapy’s role in the children’s lives.     

Symptom burden in individuals with cerebral palsy

The current study sought to (1) determine the relative frequency and severity of eight symptoms in adults with cerebral palsy (CP), (2) examine the perceived course of these eight symptoms over time, and (3) determine the associations between the severity of these symptoms and psychosocial functioning. Eighty-three adults with CP completed a measure assessing the frequency, severity, and perceived course of eight symptoms (pain, weakness, fatigue, imbalance, numbness, memory loss, vision loss, and shortness of breath). Respondents also completed measures of community integration and psychological functioning. The results indicated that pain, fatigue, imbalance, and weakness were the most common and severe symptoms reported. All symptoms were reported to have either stayed the same or worsened, rather than resolved, over time. The symptoms were more closely related to social integration than to home integration, productive activity, or psychological functioning. Memory loss was a unique predictor of social integration in the multivariate context. This study highlighted several common and problematic symptoms experienced by adults with CP. Additional research is needed to identify the most effective treatments for those symptoms that affect community integration and psychological functioning as a way to improve the quality of life of individuals with CP.     

Effect of Social Support on Parenting Stress of Korean Mothers of Children with Cerebral Palsy

[Purpose] This study investigated the effect of perceived social support on the parenting stress of mothers who have children with cerebral palsy (CP). [Methods] This study was conducted using surveys, literature review, and interviews. Survey data were collected from 181 mothers of children (under 18 years of age) with CP. [Results] Level of disability, mother''s health status and social support were significant predictors of the parenting stress of mothers. [Conclusion] We have to comprehend and share the psychological and physical affliction of mothers having much difficulty nurturing children with CP. Also, the government should take social responsibility for the upbringing of their children, developing back-up programs for mothers and making them comprehensively available to support the psychological and physical health of mothers of children with CP.Key words: Cerebral palsy, Parenting stress, Social support     

Parenting Stress in Families of Children with Cornelia de Lange Syndrome and Down Syndrome

We assessed similarities and differences in self-reported stress (Parenting Stress Index: Short Form [PSI-SF]), patterns of challenging child behavior (Nisonger Child Behavior Rating Form [NCBRF]), and characteristics of autism (Gilliam Autism Rating Scale 2nd Edition [GARS-2]) across two distinct groups of children and young adults 5 to 24 years old: Cornelia de Lange Syndrome (CdLS, n = 25, M _age (SD) = 11.4 (4.7) years), and Down syndrome (DS, n = 23, M _age (SD) = 13.4 (6.0) years). Parents were recruited from the CdLS-USA Foundation and DS parent support groups across the United States. The study focused on identifying specific patterns of (a) parenting stress and (b) challenging behavior and autism-like characteristics in children with CdLS and DS. It was found that parents of CdLS children experienced far more stress than those of children with DS, and the difference could not be explained completely by demographic variables or children’s developmental level. Rather it appears that the especially elevated stress in parents of children with CdLS can be traced in significant part to the children’s high levels of challenging behavior, low levels of pro-social behavior, and self-injury / stereotypy. Additional results revealed that children with CdLS exhibited significantly higher levels of challenging behavior and autism-like characteristics, and lower levels of pro-social behavior, and appropriate communicative behaviors. Multivariate regression showed that optimum prediction of stress for the total sample was yielded by a combination of the child’s elevated self-injury / stereotypy and decreased social interaction skills (R ²  = 0.217, R ² _adj  = 0.182, p _model  = 0.004), and the addition of the child’s diagnosis significantly increased predictability, R ²  = 0.273, R ² _adj  = 0.223, p _model  = 0.003. The elevated stress in parents of children with CdLS appears to be focused primarily on their children’s specific difficult child behaviors, a factor that was of much less concern to parents of children with DS. Results are discussed in terms of a possible behavioral phenotype for CdLS and future research on early intervention for parenting stress. It is noted that parenting stress in the CdLS sample is so high as to be unmeasurable (i.e., ceiling effect) in a large minority of the parents, and this makes it an urgent priority to develop well-targeted early interventions for parenting stress in these families.     

直立不耐受患儿生活质量及其家庭影响因素分析

目的了解直立不耐受患儿生活质量现状,分析影响生活质量的家庭因素。方法以74例确诊的直立不耐受患儿作为病例组,74例与患儿人口统计学资料相匹配的健康儿童作为对照组,采用一般情况调查表、焦虑自评量表、家庭关怀度指数问卷以及儿少主观生活质量问卷等工具,对两组儿童及家长进行调查与访谈。结果直立不耐受患儿生活质量总体满意度得分(62.39±14.82分)显著低于对照组儿童(72.49±17.31分)(t=-3.811,P<0.01)。单因素分析表明,患儿的父母教养方式、家庭关系与家庭功能是影响其生活质量的主要家庭因素。结论直立不耐受患儿生活质量低于健康儿童,家庭因素是其重要影响因素。提示医护人员应关注患儿的生活质量及其家庭环境的影响与作用。     

Contributions of the Cognitive Style Questionnaire and the Dysfunctional Attitude Scale to Measuring Cognitive Vulnerability to Depression

The first objective of this study was to separate the contributions of the Cognitive Style Questionnaire (CSQ) and the Dysfunctional Attitude Scale (DAS) to maladaptive cognitive patterns in their relations to symptoms of depression and their potential developmental origins: emotional maltreatment, parents’ typical feedback styles, and parents’ dysfunctional attitudes regarding their offspring. Other objectives were to examine these relations in the context of symptoms of anxiety and to learn whether selected aspects of the Cognitive Vulnerability to Depression Project (CVD Project; Alloy, & Abramson, 1999) would generalize to a distinctive sample (n = 98). The same relations between the DAS and the CSQ and depression and developmental origins emerged as in the CVD Project,  but relations with the DAS were somewhat more robust.

Mothers of children with cerebral palsy with or without epilepsy: a quality of life perspective

Purpose.?Disability in a child affects not only the child's life but also the family's life. The aim of our study is to verify the quality of life (QOL) of mothers of disabled children with cerebral palsy (CP) with epilepsy compared with non-epilepsy children evaluated in a Brazilian center.

Methods.?Thirty mothers of disabled children participated in the study. The control group comprised of 18 healthy mothers of children without disabilities. All mothers agreed to participate in the study. They completed the evaluation forms of the SF-36 health survey, a well-documented, self-administered QOL scoring system.

Results.?The results of our study support the premise that mothers of children with CP, as a group, have poorer QOL than mothers of not disabled children.

Conclusions.?We also observed that mothers of children with CP and epilepsy have poorer QOL than mothers of children with CP without epilepsy.     

The course of health-related quality of life of preschool children with cerebral palsy

Purpose: The purpose of this paper is to describe the course of the health-related quality of life (HR-QoL) of children with cerebral palsy (CP) between the ages of 2.5 and 4.5 years, at both group and individual level. We also examined whether CP characteristics are helpful in understanding which children show a decrease in HR-QoL. Methods: HR-QoL of 72 children with CP was measured using the TNO-AZL Preschool children Quality of Life (TAPQOL) questionnaire at the ages of 2.5, 3.5 and 4.5 years. The course of HR-QoL was compared between groups with different CP characteristics. Results: Median scores for 10 of the 12 domains of the TAPQOL were found to be stable between ages 2.5 and 4.5 years. However, individual children showed great changes in HR-QoL at these ages, for all domains. A larger proportion of children with less severe CP showed a decrease in HR-QoL for the behaviour problems domain (p = 0.02), and a larger proportion of unilaterally affected children showed a decrease in HR-QoL regarding the anxiety (p < 0.001) and social functioning (p = 0.01) domains. Conclusions: Although the median HR-QoL of children with CP is generally stable at these ages, much variation in the course of HR-QoL exists between individual children. There is no clear association between motor functioning or limb distribution and a decrease in HR-QoL.

Implications for Rehabilitation

• Although preschool children with cerebral palsy (CP) generally have a fairly good health-related quality of life, large individual differences in the course of health-related quality of life exist.

• The type of CP or the level of motor disabilities is not related to the course of health-related quality of life.

• Because of its subjective nature, for young children with CP health-related quality of life is to be determined by asking their parents, not by doctor’s estimation depending on disease-specific factors.