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.

     

Sociometric status and the attribution of intentions in a sample of adolescents with cerebral palsy

Purpose To examine how cerebral palsy (CP) and sociometric status at age 10 explain the development of a cognitive bias across two groups of adolescents aged 15.

Method Children with CP (N?=?60) and without CP (N?=?57) are part of a follow-up study. Three categories of sociometric status (popular, average, rejected) were obtained by conducting a class-wide interview in the class of the target children at age 10. At 15 years old, the same children (CP and non-CP) were asked to complete the Home Interview With Child questionnaire measuring a cognitive bias (hostile attribution of intentions (AI)).

Results Children with CP, especially girls, were significantly more rejected and less popular than controls at age 10. At age 15, among all participants, sociometric rejected and popular children tended to have a higher percentage of hostile AI than sociometric average children.

Conclusions There were no significant results for the combined effect of CP and sociometric status on the development of hostile AI at age 15. However, knowing the risk incurred by children with CP of being socially rejected, attention should be paid in the rehabilitation process to opportunities for social participation to facilitate the development of social competence.

• Implications for Rehabilitation

• Level I or II cerebral palsy (CP) is a condition that affects not only motor abilities but also social competence in children.

• Sociometric status in a group tends to affect the development of the ability to interprete intentions of others during adolescence.

• Sociometric measures in the class of children with CP could be a useful tool in the rehabilitation process in order to better define social participation opportunities.

• To improve social participation attempts, rehabilitation interventions should target social initiating skills, flexibility in interpreting peers’ behaviours, and ability to react effectively to negative peer treatment.

     

Transcultural adaptation and validation of the Korean version of Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD)

Abstract

Purpose: The aim of this study was to translate and transculturally adapt the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) questionnaire into Korean language, and to test the reliability and validity, including the internal consistency, known-group validity and factor analysis of the Korean version of the CPCHILD. Methods: A Korean version of CPCHILD was produced according to internationally accepted guidelines. For validity testing, 194 consecutive parents or caregivers of children with cerebral palsy (CP) were recruited and completed the questionnaire. Internal consistency, test–retest reliability, and known-groups validity were evaluated and factor analysis was performed to validate the Korean version of the CPCHILD. Results: In terms of internal consistency, a Cronbach's alpha was above 0.90 in all domains of the CPCHILD (range 0.921 to 0.966), except the 5th domain (0.628). In terms of known-groups validity, the total score of the CPCHILD was significantly different according to the Gross Motor Function Classification System (GMFCS) level (p?<?0.001). Intra-class correlation coefficient spanned from 0.517 to 0.801. Factor analysis showed that the five-factor solution of the CPCHILD explained 76.7% of the variance with 59.0, 6.5, 5.1, 4.2 and 3.2% of variance by each components number. Conclusions: The Korean version of CPCHILD was found to be a reliable and valid questionnaire of caregivers’ perspectives on the health-related quality of life in severely affected children with CP. However, the Korean version of CPCHILD contains some redundant items, and factor analysis suggested a five-domain questionnaire.

• Implication for Rehabilitation

• The Korean version of CPCHILD is a reliable, internally consistent, valid instrument for assessing the health-related quality of life in severely affected children with CP from the perspective of caregivers.

• After the transcultural adaptation and validation of the Korean CPCHILD, it can be reliably used in clinical and research settings to evaluate the health-related quality of life in Korean patients with CP.

     

Quality of life of Finnish children with cerebral palsy

Purpose: The aim of this study was to examine the quality of life (QOL) of Finnish children with cerebral palsy (CP) in different parts of Finland from the children’s and caregivers’ perspectives. The acceptability of the Finnish version of the CP QOL-Child questionnaire for clinical use is also evaluated. Method: This study was conducted in 2010–2013 as a part of the national CP-project. It is based on validated CP QOL-Child questionnaires. Children between 9 and 12 years were asked to fill in the child-self-report version. Caregivers who had a 4- to 12-year-old child with CP filled in parent-proxy reports. Results: Responses were obtained from 63 children and 161 caregivers. The response rates were 63 and 60%, respectively. Overall QOL was reported to be fairly good with no significant regional differences within Finland. Children reported significantly higher QOL in all QOL-domains except “social wellbeing and acceptance” than their caregivers did. The results showed acceptable levels of internal consistency of the Finnish version of the CP QOL-Child. Conclusions: QOL of children with CP is quite good in Finland. However, barriers to participation and the impact of disability and pain impair QOL. The Finnish version of the CP QOL-Child questionnaire is an appropriate clinical tool to assess QOL.

• Implications for Rehabilitation

• The used questionnaire provides an effective tool to identify areas for targeting support actions and to set goals for rehabilitation plans.

• The study brings forward the voices of children.

• It was found that pain has a great role in QOL, which should be taken into account when making rehabilitation plans.

• The participation of children with CP should be strengthened in every possible ways.

     

Service use and family-centred care in young people with severe cerebral palsy: a population-based,cross-sectional clinical survey

Abstract

Purpose: To assess healthcare use and family perception of family-centred care in children and young adults with severe cerebral palsy (CP) within a geographical region of the UK. Method: Young people (4–27years) with severe forms of CP; Gross Motor Function Classification System levels IV and V, were recruited via an established case register. Data were collected in the participant’s home using a standardised background proforma and validated questionnaires. The Measure of Processes of Care was used to assess the family’s perception of family-centred care. Results: One-hundred and twenty-three children, young people and their families/guardians participated. Results showed high accessing of specialist services in childhood with a considerable decrease in young adults. Use of generalist services remained relatively constant. The reported use of formal respite services and support groups/youth clubs was relatively poor. Family-centred care was poor in the area of “providing general information” (2.8?±?1.73) but more moderate in the areas of “providing specific information about the young person” (4.2?±?1.94), “enabling and partnership” (4.2?±?1.9), “co-ordinated and comprehensive care” (4.3?±?1.95) and “respectful and supportive care” (4.7?±?1.75). Conclusions: The accessing of specialist services and respite care notably decreases amongst adolescents with severe forms of CP and the perception of family-centred care amongst families was fair at best. In particular, the results highlight the need for families to be provided with more general information and advice.

• Implications for Rehabilitation

• In a quest to enhance the rehabilitation process in young people with severe forms of cerebral palsy:

• Commissioners and service providers need to a adopt a more rationalised, needs led approach to service provision across the lifespan of people with severe forms of cerebral palsy, to include an effective and efficient transitional period.

• Habilitation specialists working with young adults need to continue to recognise the importance of family-centred care in managing this complex and chronic condition.

• Professionals working within the healthcare system must provide better communication and improve their dissemination of information to the families of children and young people with complex needs.

     

Stages of change in physical activity behavior in children and adolescents with cerebral palsy

Abstract

Purpose: To identify facilitators and barriers frequently experienced by families of children with cerebral palsy (CP) and associated with being at the pre-intention, intention and action stages for physical activity. Method: Qualitative study involving in-depth focus group interviews with 33 ambulatory children and adolescents with CP and their parents (n?=?33). These interviews were followed by questionnaires to determine stage of behavior change (i.e. pre-intention, intention and action) related to the child’s participation in physical activity. Results: Families who were classified in the intention stage of behavioral change were more likely to identify environmental barriers related to the social environment and the facility or program than parents at the pre-intention stage. Families who were classified into intention and action stages were more likely to identify facilitators related to parental factors than families at the pre-intention stage. Moreover, at the action stage facilitators were related to the facility/program. Conclusions: The identified facilitators and barriers, organized according to three stages of change (pre-intention, intention and action), provide important theoretical insights into how and why children and adolescents with CP and their parents might change their physical activity behavior.

• Implications for rehabilitation

• Understanding the barriers and facilitators of physical activity for children and adolescents with CP is essential for designing effective interventions to promote participation in this group.

• Using the three stages of change and the identified barriers and facilitators for participation can result in tailored advice to increase physical activity behavior.

     

Fatigue in the mothers of children with cerebral palsy

Purpose: To evaluate fatigue in the mothers of children with cerebral palsy (CP), and to determine its associations with clinical parameters of CP, depression and quality of life (QoL). Method: Ninety children (50 girls and 40 boys) with spastic CP and their mothers were included. Control group comprised mothers of healthy children. Gross motor function classification system (GMFCS) was used for determining functional status. Spasticity was evaluated by using modified Ashworth scale. Fatigue symptom inventory (FSI) was used for assessing maternal fatigue, Nottingham health profile (NHP) for maternal QoL, and Beck Depression Scale (BDS) for maternal depression. Results: Mothers of children with CP scored significantly higher in all FSI subgroups (intensity of fatigue, duration of fatigue and interference with QoL), all NHP subgroups and BDS (p?p?< 0.01). No association was found between FSI and clinical parameters of children with CP including age, gender, type of CP, tonus and functional impairment (p?>?0.05). Conclusions: Our findings indicate that fatigue levels of mothers with CP children are higher than those with healthy children and associated with depression and deterioration in QoL in terms of physical, social and emotional functioning. This should be considered while designing a family centred rehabilitation programme for children with CP.

• Implications for Rehabilitation

• Caring for a child with cerebral palsy has psychological, social and financial impacts on familiesand is associated with increased levels of fatigue among mothers.

• The capacity of current programs and services needs to be strengthened to accommodate theneeds of children with CP and their mothers in order to reduce fatigue of mothers.

• New programs need to be developed to provide psychosocial support for the mothers andto reduce their fatigue as they continue to care for their children.

• Provision of assistive technology devices (particularly suitable wheelchairs) will be useful inreduction of fatigue levels of mothers.

     

Inter-rater agreement of the Arabic Gross Motor Classification System Expanded & Revised in children with cerebral palsy in Jordan

Abstract

Purpose: To examine the agreement among parents-report, research physiotherapists-report, and clinical physiotherapists-report using the Arabic-Gross Motor Classification System Expanded & Revised (GMFCS E&R) in classifying Jordanian children with cerebral palsy (CP). Methods: One-hundred and sixteen child with CP [mean age 4 years 7 months (SD?=?4 years 5 months)] participated in the study. Parents were asked to classify their children using the Arabic-GMFCS family report questionnaires. Clinical and research physiotherapists were asked to classify children using the Arabic-GMFCS E&R. Agreement between respondents was determined using Cohen’s linear weighted kappa statistic. Results: An excellent level of agreement was reported between research physiotherapists and clinical physiotherapists, substantial level of agreement between parents and research physiotherapists and moderate agreement between parents and clinical physiotherapists. Conclusions: The Arabic-GMFCS E&R is a reliable classification system that can be administrated by health care providers and parents of children with CP in Jordan to help plan services for children.

• Implications for Rehabilitation

• The Arabic GMFCS E&R is a reliable and user friendly system that can be administrated by health care providers and parents of children with CP in Jordan to guide services planning.

• Classifying the children with CP should be performed by the team members (including the family and the children when they are transitioning from childhood to adulthood) independently first, then discussed among and consensus can be reached.

• The Arabic GMFCS E& R is a reliable classification system that can be used in Jordanian health care system despite the fact that therapists who practice in these settings were not familiar with this classification.

     

An exploration of the relationship between two measures of children’s participation

Purpose: To investigate the relationship between the Children Participation Questionnaire and the Children’s Assessment of Participation with Hands.

Materials and methods: Two researchers classified the item contents independently using the International Classification of Functioning, Disability and Health-Child and Youth version as a guide. Parents of 51 children with intellectual and developmental disabilities completed both measures within one month.

Results: The linking results indicated that the two participation measures covered a broad range of life domains, which corresponded well to the conceptually matched Activities and Participation categories/chapters of the International Classification of Functioning, Disability and Health-Child and Youth version. A significant moderate link (Spearman’s ρ coefficient?=?0.68, p?ρ?=?0.47–0.71, p?Conclusion: This study provides evidence for the content and construct validity of the two children’s participation measures. The findings also offer important insights about the similarities and differences between the two measures. This knowledge will assist clinicians in selecting outcome measures.

• Implications for rehabilitation

• The Children Participation Questionnaire and Children’s Assessment of Participation with Hands demonstrate good content and convergent validity.

• The two measures capture distinctive aspects and/or degrees of children’s participation.

• Clinicians and researchers need to be aware of the similarities and differences between the two measures before selecting outcome measure.

     

Interobserver reliability of the Turkish version of the expanded and revised gross motor function classification system

Purpose: Cerebral palsy (CP) is the most common disability in childhood. The gross motor function classification system (GMFCS) has become an important tool to assess motor function in CP patient. In 2007, the expanded and revised (E&R) version of GMFCS which includes age band for youth 12–18 years of age was developed. The aim of this study was to evaluate reliability of Turkish version of expanded and revised GMCS. Methods: We assessed interobserver reliability between two physical medicine and rehabilitation specialists in 136 children with CP and test-retest reliability within a subgroup of 48 patients. Percent agreement, intraclass correlation coefficient (ICC) and μ statistics were used to evaluate reliability. Result: The ICC between two physicians was 0.97 and the total agreement was 89%. This result indicates excellent agreement. The overall weighted μ was 0.86. High test-retest reliability was found (ICC: 0.94 95% confidence interval) and the total agreement was 75% for test-retest reliability. Conclusion: The Turkish version of the E&R GMFCS is shown to be reliable and valid for assessment of Turkish CP children.

Implications for Rehabilitation

• Cerebral palsy (CP) is the major developmental disability affecting function in children.

• Assessment of functional status of children with CP is important for planning treatment.

• The gross motor function classification system (GMFCS) can be considered to be a diagnostic tool for predicting motor development in children with CP based on self-initiated movement, emphasising on sitting, transfers and mobility. The expanded GMFCS includes an age band for youth 12–18 years of age.

     

Investigation of quality of life in mothers of children withcerebral palsy in Iran: association with socio-economic status,marital satisfaction and fatigue

Purpose: This study aimed to compare the quality of life (QOL) of Mothers of Children with Cerebral Palsy (MCCPs) with mothers of Typically Developing (TD) children as a Control Group (CG). The association of the mediating variables including socio-economic status (SES), marital satisfaction and fatigue with maternal QOL was also evaluated. Method: The MCCPs group consisted of 120 mothers (mean age: 30.3?±?5.5 years) of children with CP. The CG included 100 mothers (mean age: 29.9?±?4.5 years) of TD children. Demographic characteristics of the participants were recorded and the data was collected by World Health Organization Quality of Life-BREF (WHOQOL-BREF), SES Questionnaire, Index of Marital Satisfaction (IMS) and Fatigue Severity Scale–Persian (FSS-P). Data analysis was done by SPSS version 16.0. Results: The QOL and SES were lower, while FSS-P and IMS were higher in MCCPs group than CG (p < 0.001). The SES, IMS and FSS-P associated with all domains of QOL in MCCPs group, while they did just with some domains of QOL in CG (p < 0.05). Conclusions: The lower QOL in MCCPs group is supposed to be mediated by the SES, marital satisfaction and fatigue so, maternal empowerment in terms of these mediators and family-centered approach are recommended.

Implications for Rehabilitation

• The mothers of children with CP compared to mothers of typically developing children face particular challenges relating to rearing the child with disability.

• These tedious and chronic challenges influence on QOL, socio-economic status, marital satisfaction and perceived fatigue in mothers of children with CP.

• The QOL of mothers of children with CP seems to be exacerbated by factors such as lower SES, marital dissatisfaction and higher perceived fatigue.

     

Balance improvement after physical therapy training using specially developed serious games for cerebral palsy children: preliminary results

Purpose: Cerebral palsy (CP) leads to various clinical signs mainly induced by muscle spasticity and muscle weakness. Among these ones impaired balance and posture are very common. Traditional physical therapy exercise programs are focusing on this aspect, but it is difficult to motivate patients to regularly perform these exercises, especially at home without therapist supervision. Specially developed serious games (SG) could therefore be an interesting option to motivate children to perform specific exercise for balance improvement. Method: Ten CP children participated in this study. Patients received four sessions of SG included into conventional therapy (1 session of 30?min a week during 4 weeks). Trunk control and balance were assessed using Trunk Control Motor Scale (TCMS) before and after interventions. Results: Children presented a significant improvement in TCMS global score after interventions [37.6 (8.7) and 39.6 (9.5) before and after interventions, respectively, p?=?0.04]. Conclusion: SG could therefore be an interesting option to integrate in the conventional treatment of CP children.

• Implication for Rehabilitation

• Cerebral palsy (CP) leads to balance issues.

• Rehabilitation exercises are not performed (enough) at home.

• Serious games (SG) could increase patients’ motivation.

• SG increase balance control of CP children.

     

Child engagement in daily life: a measure of participation for young children with cerebral palsy

Abstract

Purpose: The objectives of this study were to determine the: (1) internal consistency and test–retest reliability of the Child Engagement in Daily Life measure; (2) construct validity of the measure (known groups methods), that is, the ability of the measure to discriminate participation in family and recreational activities and self-care among young children of varying age and motor ability and between children with and without cerebral palsy, and (3) stability and hierarchical ordering of the items for young children with CP to devise an interval-level scoring system. Methods: 429 children with CP and their parents and 110 parents of children without CP participated in this methodological study. Parents completed the Child Engagement in Daily Life measure and therapists assessed the children's gross motor function. Rasch analysis was used to create an interval-level measure. Results: Children's frequency in and enjoyment of participation in family and recreational activities and self-care varied by age and gross motor ability. Internal consistency of the domains of the measure was high, Cronbach alpha values ranging from 0.86 to 0.91; test–retest for participation in family and recreational activities was acceptable, ICC?=?0.70, and in self-care was high, ICC?=?0.96. The items in the measure had a good fit and a logical hierarchical ordering. Conclusion: Study results support the validity and reliability of the Child Engagement in Daily Life measure as an assessment of participation in family and recreational activities and self-care for young children with CP.

• Implications for Rehabilitation

• Participation in family and recreational activities and self-care for young children with cerebral palsy can be reliably and validly assessed using the Child Engagement in Daily Life measure.

• Service providers are encouraged to support young children's participation in family and recreational activities and self-care.

     

An ICF-CY-based approach to assessing self- and observer-reported functioning in young persons with achondroplasia – development of the pilot version of the Achondroplasia Personal Life Experience Scale (APLES)

Purpose: Achondroplasia is the most common disproportionate short stature which impacts patients’ well-being. Little is known about the burden of disease in terms of functioning of patients and few disease-specific patient-reported outcome (PRO) measures exist. To understand the consequences of achondroplasia, the objective of the study was to develop an achondroplasia-specific PRO tool.

Method: Focus group discussions including 34 German patients (age 8–18 years) and 21 parents were conducted and qualitatively analyzed. To identify relevant concepts, statements were coded according to the International Classification of Functioning, Disability and Health: Children & Youth version (ICF-CY). Upon condensation, relevant statements were reformulated as items.

Results: 1950 statements related to 125 ICF-CY categories were identified. After condensation and prioritization, 59 items were retained. These were generated based on the ICF-CY domains environmental factors (27 items), activities and participation (18 items), body functions (9 items), and body structures (5 items).

Conclusions: A new instrument, the Achondroplasia Personal Life Experience Scale (APLES) to assess burden of disease and functioning from the patients perspective of children and adolescents with achondroplasia has been developed in its pilot version based on the classification of the ICF-CY. Psychometric performance of the APLES is currently being examined.

• Implications for Rehabilitation

• Using the ICF-CY within the development of a disease-specific instrument to assess burden of disease and functioning provides guidance for clinicians and researchers in the selection of appropriate instruments complying with ICF categories.

• Qualitative research based on focus group interviews is an effective method to elicit experiences, beliefs, points of view, understandings, perceptions, impressions, needs and concerns as well as attitudes from the perspective of the individuals on a specific topic such as functioning.

• Direct assessment of the patient perspective is necessary to thoroughly understand a patient’s experience of disease and treatment, the impact on their functioning and relevant health-care needs.

• Including the perspective of the patient and its family is an important component in the provision of health-care services.

• Patient-reported outcomes are not only important for the development of interventions and the use in clinical trials but can also be used in medical decision-making processes.

     

How are actual needs recognized in the content and goals of written rehabilitation plans?

Abstract

Purpose: The primary aim of the study was to investigate the interrelation between needs and functional difficulties and the therapeutic goals in children with cerebral palsy (CP) as documented in individual written rehabilitation plans. Method: The study was a retrospective cross-sectional register study. The data consisted of randomly chosen register documents for 77 children and adolescents with CP in different predetermined age ranges. The International Classification of Functioning, Disability and Health – Child and Youth version (ICF-CY) was used as a reference for analyzing the content of the written statements. Results: The rehabilitation plans for 70 children, 1–16 years of age, representing all GMFCS levels were analyzed. Goals were not well reflected in the children’s needs and functional difficulties. The needs, functional difficulties and goals mainly encompassed the components of body functions and activity/participation. In half of the plans the presence of the parents was mentioned, and the plans were made in multidisciplinary collaboration. Conclusions: The results of this study indicate deficiencies in the content and goals of the written rehabilitation plans. The ICF-CY could serve as a framework to help professionals and parents identify the child’s needs and those areas where the goals should be targeted.

• Implications for Rehabilitation

• Documenting the child’s and family’s needs in relation to activity and participation preferences is critical to rehabilitation and intervention planning.

• Goals, based on the child’s needs, should be identified in collaboration with all parties involved, and focus on the child’s functioning in meaningful everyday activities.

• The ICF-CY could serve as a framework for the family and professionals to identify needs and to communicate rehabilitation goals.

     

International classification of functioning,disability and health in children with cerebral palsy

Purpose: We intended to describe how concepts from recent models of disability have been studied for evaluation of children with cerebral palsy (CP) and their clinical implications. Method: We revised studies that focused on the components of the International Classification of Functioning, Disability and Health (ICF) in children with CP. Results: Researchers have reported that children with CP exhibit impairments in various body functions/structures, limitations in functional activities performance and experience poorer participation outcomes than their typical peers. Moreover, it has been showed that participation of children with CP was affected by environmental factors. Conclusion: Therefore, evaluation and rehabilitation processes should be focused on the quality of life improvement by emphasizing what a child can and wants to execute within the environment. Also, environmental factors should be recognized so that barriers could be minimized and adaptations to the environment achieved. However, few studies have verified the interrelationship between contextual factors and the functioning and disability domains in children with CP. This would allow us to know about approaches specifically designed for these children’s needs.

Implications for Rehabilitation

• Cerebral palsy is a disabling disease which impacts in body structures and functions, functional activities performance and social participation.

• ICF is a model of disability that focuses on the integration of these three dimensions.

• The knowledge about the concepts of ICF applied in children with CP allows an evidence-based practice.

     

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.

     

What does the literature say about using robots on children with disabilities?

Purpose: The purpose of this study is to examine the extent and type of robots used for the rehabilitation and education of children and young people with CP and ASD and the associated outcomes.

Methods: The scholarly literature was systematically searched and analyzed. Articles were included if they reported the results of robots used or intended to be used for the rehabilitation and education of children and young people with CP and ASD during play and educative and social interaction activities.

Results: We found 15 robotic systems reported in 34 studies that provided a low level of evidence. The outcomes were mainly for children with ASD interaction and who had a reduction in autistic behaviour, and for CP cognitive development, learning, and play.

Conclusion: More research is needed in this area using designs that provide higher validity. A centred design approach is needed for developing new low-cost robots for this population.

• Implications for rehabilitation

• In spite of the potential of robots to promote development in children with ASD and CP, the limited available evidence requires researchers to conduct studies with higher validity.

• The low level of evidence plus the need for specialized technical support should be considered critical factors before making the decision to purchase robots for use in treatment for children with CP and ASD.

• A user-entered design approach would increase the chances of success for robots to improve functional, learning, and educative outcomes in children with ASD and CP. We recommend that developers use this approach.

• The participation of interdisciplinary teams in the design, development, and implementation of new robotic systems is of extra value.

• We recommend the design and development of low-cost robotic systems to make robots more affordable.