Muscle strengthening in children and adolescents with spastic cerebral palsy: considerations for future resistance training protocols

Resistance training of the lower limbs is now commonly used in clinical practice in children and adolescents with spastic cerebral palsy (CP). However, the effectiveness of this type of training is still disputed. The most recently published systematic review with meta-analysis included interventions such as electrical stimulation and resistance training and found insufficient evidence to support or refute the efficacy of these exercises in children with CP. Thus, the aim of this article is to evaluate the extent to which training protocols from the most recent randomized controlled trials are in keeping with the evidence for effective resistance training in children who are developing typically, as reflected in the training guidelines of the National Strength and Conditioning Association. RECOMMENDATIONS: for resistance training protocols, based on this evidence and appropriate to children with CP, are provided to help guide both future research and clinical practice for resistance training in children with CP.     

The psychosocial well-being of parents of children with cerebral palsy: a comparison study

Purpose.?Parents of children with cerebral palsy (CP) may be at risk from poor psychosocial well-being, compared with parents of children without a long-term health condition (LTHC). However, research has produced some conflicting findings on the topic and no comparison studies have been conducted in the UK. Furthermore, studies have only used measures of negative psychosocial well-being. The aim of this study was to conduct a comparative study of parents of children with CP and parents of children without a LTHC in the UK.

Method.?Seventy parents of children with CP and 70 parents of children without a LTHC completed self-administered questionnaires, comprising measures of psychosocial distress and positive psychosocial well-being.

Results.?This study demonstrated that parents of children with CP have significantly poorer psychosocial well-being compared with parents of children without a LTHC: parents of children with CP had lower satisfaction with life and higher levels of anxious and depressed mood.

Conclusions.?These results suggest caring for a child with CP may put parents at risk from poor psychosocial well-being. Interventions to improve parental well-being are urgently needed.     

Impact of Caring for a Child with Cerebral Palsy on the Quality of Life of Parents: A Systematic Review of the Literature

The implications of caring for a child with cerebral palsy (CP) are considerable, and parents have to cope with many changing demands related to the specific needs of their child. A new research field, devoted to the consequences of these caring tasks, has recently emerged. However, an overall vision is lacking, one that would enable us to understand how research is evolving and the relevant data that should be taken into account when planning interventions with these families. In this paper, we review the literature on the effects of caregiving on parents of children with CP, and summarize the factors related to these effects. A systematic search of online databases was performed and further studies were identified based on the reference lists of selected articles. Forty six articles that met the inclusion criteria were analysed. The review shows that caregivers of children with CP tend to have high levels of stress and depression and lower quality of life than parents of healthy children. We identify child behaviour and cognitive problems, low caregiver self-efficacy and low social support as factors that are consistently related with higher levels of stress and depression. The implications of these findings are discussed, especially those related to interventions that should be addressed to the family as a whole and which should aim to enhance parents’ competence and resources to better cope with the demands of the caring task.     

Psychological Correlates of Quality of Life in Children with Cerebral Palsy

Psychosocial outcomes have come to the front as a main concern for individuals with Cerebral Palsy (CP), promoting the need to understand the quality of life experienced by children and adolescents diagnosed with CP. As a result, the current study examined the relationships among quality of life in children with CP, the psychological symptoms and parenting characteristics of the parents of these children, and the emotional and behavioral functioning of these children. Results of this study suggested that these variables are related in interesting ways. Further, parenting stress, parents’ depressive symptoms, and children’s internalizing behavior problems were significant predictors of the quality of life experienced by the children in this sample. Thus, the direct benefits from optimizing parents’ mental health as well as that of their children may prove to be an important intervention in helping to improve the quality of life of children who have been diagnosed with CP.     

Cardiovascular risk in parents of children with extreme lipoprotein cholesterol levels: the Bogalusa Heart Study

Fasting serum lipids, lipoprotein cholesterol, and other cardiovascular disease risk factors were examined in 321 natural parents of children with low and/or high levels of beta- and pre-beta-lipoprotein cholesterol. Parents of children from low pre-beta-lipoprotein groups had elevated alpha- and lower pre-beta-lipoprotein cholesterol levels. Parents whose children had high beta-lipoprotein cholesterol levels also had high serum total and beta-lipoprotein cholesterol levels. Parents of children with high levels of both beta- and pre-beta-lipoprotein cholesterol had a high prevalence of both abnormal risk factor levels, as well as clinical evidence of early coronary artery disease (before age 50 years). These observations show that parents of children with high beta- and/or pre-beta-lipoprotein cholesterol levels have greatly enhanced risk for cardiovascular disease, and children mirror their parents' lipoprotein cholesterol levels. These observations emphasize the need for cardiovascular risk evaluation early in life, especially in high-risk families.     

Determinants of early life leptin levels and later life degenerative outcomes

The early (intrauterine and neonatal) life environment plays an important role in programming the susceptibility in later life to chronic degenerative diseases, such as obesity, cardiovascular diseases, diabetes mellitus, cancer and osteoporosis.Among other hormones, leptin plays a major role in the regulation of the overall metabolism and has multiple neuroendocrine (adeno- and neuro-hypophysis axes and the hypothalamus-pituitary-adrenal axis) and immune functions.The hormone exerts its actions beginning in the early life time period, regulating the intrauterine and early extrauterine life growth and development, as well as the adaptation to extrauterine life, neonatal thermogenesis and response to stress. Recent findings also support a role of leptin in the process of fetal bone remodeling and brain development.Therefore, it is of interest to explore the physiology of leptin in early life, as well as those factors that may perturb the balance of the hormone with pathological consequences in terms of confining an increased risk for disease in later life.This review aims to summarize reported findings concerning the role of leptin in early life, as well as the association of fetal, maternal and placental factors with leptin levels, while attempting to speculate mechanisms through which these factors may influence the risk for developing chronic diseases in later life.     

Caffeine and cerebral palsy: A systematic review of randomized controlled trials and cohort studies

ObjectiveTo systematically review the effects of caffeine on the development of cerebral palsy (CP). Design: Systematic review.SettingA search of five databases was performed to identify randomized controlled trials (RCT) or cohort studies published through May 2022. Studies conducted on newborns at risk of developing CP upon receiving caffeine in the first days of life were included as well. Two independent researchers assessed the screening, data extraction, and methodological quality assessment.Main outcome measures: Percentage of children with CP.ResultsFour studies met our inclusion criteria. The only RCT found a decreased risk (approximately 40 %) of developing CP with 20 mg/kg caffeine citrate (OR 0.59, 95 % CI 0.39, 0.89). In addition, when comparing the period over which caffeine citrate was administered, one retrospective cohort study reported that infants who received caffeine up to the second day of life were also less likely to develop CP.Some methodological issues should be highlighted: in the RCT, the differences between the groups with respect to loss to follow-up were not explored. Similarly, intention-to-treat analyses were not performed. Most cohort studies have not adequately identified the primary confounding factors. Conclusions: Caffeine could be an important intervention in preventing CP. However, few studies have assessed the effects of caffeine on the risk of CP development. Due to methodological differences, no recommendation regarding its use can be safely made. The findings suggest a positive effect of caffeine citrate in the early stages of life with approximately 20 mg/kg of weight; however, well-designed RCTs with adequate sample size and power, randomization process, outcome measurement, and data analysis are still required.     

The impact of caring on young carer's lives. An international literature review (1990-2006)

Children growing up with chronically ill parents and those who are involved into the care of their parents are at risk to experience adverse effects on their whole development. This literature study is part of a research project that intends to work out a basis for specific support for young carers and their families in Germany. Questions concerning the impact on young carers, and also experiences of growing up with a chronically ill parent where addressed to the last 15 years' relevant literature. Children experience positive as well as negative effects, but it is difficult to distinguish between caring responsibilities and the impact of growing up with a chronically ill parent. Positive effects are a good sense of self-esteem, maturity, identity, a close relation to the parents, as well as feeling well prepared for further life. Negative effects become apparent for the child's physical, psychosocial and educational development. Not every young carer experiences negative effects, and not every child of a chronically ill parent will necessarily experience disadvantage. Nevertheless, research results refer to the need for action in order to prevent negative consequences for the child's future life. Projects of support need to integrate the whole family and besides supporting the children, the parents need to be stabilised as well.     

Social support and adaptation outcomes in children and adolescents with cerebral palsy

Abstract

Objectives: This study had two main objectives: first, to describe the social support and psychological maladjustment of children and adolescents with cerebral palsy (CP); and second, to test a mediation model where psychological maladjustment was hypothesized to mediate the link between social support and health-related quality of life (HRQL). In addition, the moderating role of gender and age was examined for this mediation model. Methods: Self- and proxy-report questionnaires on the aforementioned variables were administered to a sample of 96 children/adolescents with CP and 118 healthy controls, as well as one of their parents. Univariate and multivariate analyses of covariance were conducted to examine differences in social support and psychological maladjustment, respectively. PROCESS computational tool was used for path analysis-based mediation, moderation and moderated mediation analyses. Results: Children/adolescents with CP reported lower levels of social support than their healthy peers, but no significant differences emerged in terms of their psychological maladjustment. For children/adolescents with CP, internalizing and externalizing problems were found to mediate the link between social support and HRQL, and these indirect effects were not conditional upon age or gender. Discussion: Children and adolescents with CP are likely have more negative perceptions of social support, but not necessarily more psychological adjustment problems than their healthy, able-bodied peers. Results further suggest that interventions targeting social support perceptions may positively affect HRQL outcomes in children/adolescents with CP, through the improvement of internalizing and externalizing dimensions of their psychological adjustment.

• Implications for Rehabilitation

• Social support perceptions are important intervention targets in psychosocial rehabilitation with children and adolescents with CP.

• Children and adolescents with CP do not necessarily present increased psychological maladjustment.

• Interventions targeting these children and adolescents’ social support may promote their psychological adjustment and health-related quality of life.

• Developmental specificities, such as age and gender differences, should be considered when planning and implementing psychosocial interventions.

     

Genetics of cleft lip and palate

Cleft lip with or without cleft palate (CL/CP) is one of the most common structural birth defects, with treatment including multiple surgeries, speech therapy, and dental and orthodontic treatments over the first 18 years of life. As a result of the treatment interventions, pediatric nurses may be required to care for these children beginning in infancy through adolescence. Providing care for these patients and families can include educating patients and parents about the genetics of CL/CP, as well as meeting their immediate medical needs. A basic overview of normal lip and palate development, classification of clefts, pathophysiology of CL/CP, incidence, inheritance, genetic and environmental causes, genetic counseling, prenatal diagnosis, fetal surgery, and nursing implications is provided to educate pediatric nurses about the basics of the genetics of CL/CP.     

Navigating in an unpredictable daily life: a metasynthesis on children's experiences living with a parent with severe mental illness

A large group of individuals suffering from mental illness are parents living with their children. These children are invisible in the health care even though at risk for illhealth. The aim of this metasynthesis was to advance knowledge of how children of parents with mental illness experience their lives, thus contributing to the evidence of this phenomenon. The metasynthesis is following Sandelowski and Barroso's guidelines. Literature searches covering the years 2000 to 2013 resulted in 22 reports which were synthesised into the theme ‘navigating in an unpredictable everyday life’ and the metaphor compass. Children of parents with mental illness irrespective of age are responsible, loving and worrying children who want to do everything to help and support. Children feel shame when the parent behaves differently, and they conceal their family life being afraid of stigmatisation and bullying. When their parent becomes ill, they distance to protect themselves. The children cope through information, knowledge, frankness and trustful relationships. These children need support from healthcare services because they subjugate own needs in favour of the parental needs, they should be encouraged to talk about their family situation, and especially, young children should to be child‐like, playing and seeing friends.     

Health-related quality of life in childhood cerebral palsy

OBJECTIVE: To describe the health-related quality of life (HRQOL) of a cross-section of children with cerebral palsy (CP) using the Child Health Questionnaire. DESIGN: Survey of the parents or guardians of children with CP. SETTING: Outpatient clinics at a tertiary care children's hospital. PARTICIPANTS: Children (N=177; 98 boys, 79 girls; mean age +/- standard deviation [SD], 8.6+/-4.2y) with CP were enrolled as a convenience sample. Study subjects were stratified by severity of CP using the Gross Motor Function Classification System. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: HRQOL scores, as determined by the Child Health Questionnaire-Parent Form 50. RESULTS: Parents reported reduced HRQOL for their children with CP. In the physical function domain, most children scored over 3 SDs below a normative sample, and scores in parental impact domains were at least 1 SD below the normative sample. Psychosocial domains were less impaired. Most of the effects on physical and parent impact domains were greater in children with more severe CP, although they were significant in most strata of severity. CONCLUSIONS: Children with CP have reduced HRQOL and the degree to which it is reduced is related to the severity of their CP.     

Important aspects of care and assistance for children 0–7 years of age being treated for cancer

Aspects of care and assistance that are important for children aged 0-7 years who are being treated for cancer were examined. Parents ( N=57) and nurses ( N=59) were asked: "What caring aspects are important in ensuring that your child/the child feels cared for?" and "What help, if any, does your child/the child need outside the hospital?". Data were analysed by content analysis. The following aspects of care were identified: amusement, clinical competence, continuity, emotional support, family participation, honest communication, information, participation in decision making, satisfaction of basic needs, social competence, the parents are well cared for, and time. Parents most frequently mentioned social competence and amusement, while nurses most frequently mentioned continuity and information. The following aspects of assistance were identified: accessible care, amusement, emotional support, family life, meeting friends, normal life, practical support, rehabilitation and school support. At least a third of the children did not need any assistance, according to parents and nurses. Parents most frequently mentioned family life, meeting friends and practical support. Nurses most frequently mentioned normal life and family life. Taken together, the results indicate that not only a family but many more people need to be involved to help children with cancer to be cured not only in a biological but also a psychosocial sense.     

Parent decision making for life support for extremely premature infants: from the prenatal through end-of-life period

Most deaths of extremely premature infants occur in the perinatal period. Yet, little is known about how parents make life support decisions in such a short period of time. In the paper, how parents make life support decisions for extremely premature infants from the prenatal period through death from the perspectives of parents, nurses, and physicians is described. Five cases, comprised of five mothers, four neonatologists, three nurses, and one neonatal nurse practitioner, are drawn from a larger collective case study. Prenatal, postnatal and end-of-life interviews were conducted, and medical record data were obtained. In an analysis by two research team members, mothers were found to exhibit these characteristics: desire for and actual involvement in life support decisions, weighing pain, suffering and hope in decision making, and wanting everything done for their infants. All mothers received decision making help and support from partners and family, but relationships with providers were also important. Finally, external resources impacted parental decision making in several of the cases. By understanding what factors contribute to parents' decision making, providers may be better equipped to prepare and assist parents when making life support decisions for their extremely premature infants.     

Course of health-related quality of life in 9–16-year-old children with cerebral palsy: Associations with gross motor abilities and mental health

Purpose.?To chart the 3-year course of health-related quality of life (HRQoL) of 9–13-year-old children with cerebral palsy (CP), and to determine its relationship with gross motor abilities and mental health.

Methods.?Children (n?=?91; 58 boys, mean age 11 years, age ranging from 8 years and 6 months to 13 years and 8 months) and parents were assessed annually with the TNO-AZL questionnaires for children's health-related quality of life as a dependent variable, and the gross motor function measure for children with CP and the child behaviour check list as independent variables.

Results.?The children reported lower HRQoL compared with children in the general population, but reported a higher HRQoL than their parents. The HRQoL remained fairly stable over the 3 years, except for an increase in the autonomy domain. The HRQOL was moderately associated with gross motor abilities, and negatively associated with internalising mental health problems. Externalising problems were only negatively associated with parent-reported HRQoL.

Conclusions.?Children with CP are more resilient and positive about their HRQoL than their parents think they are. In general, mental health in children with CP appeared to be important in understanding their perceived QoL, in addition to the severity of the CP itself.