Developmental trajectories of receptive and expressive communication in children and young adults with cerebral palsy.

AIM: The aim of this study was to determine the developmental trajectories of expressive (speech) and receptive (spoken and written language) communication by type of motor disorder and intellectual disability in individuals with cerebral palsy (CP). METHOD: The development of 418 participants (261 males, 157 females; mean age 9y 6mo [SD 6y 2mo], range 1-24y; Gross Motor Function Classification System (GMFCS) level I [n=206], II [n=57], III [n=59], IV [n=54], V [n=42]) was followed for 2 to 4 years in a longitudinal study. Communication performance was measured using the Vineland Adaptive Behavior Scales. The type of motor disorder was differentiated by type of CP as unilateral spastic (USCP, n=161), bilateral spastic (BSCP, n=202), and non-spastic (NSCP, n=55), while intellectual disability was determined by IQ or school type (regular or special). A multilevel analysis was then used to model the developmental trajectories. RESULTS: The most favourable development of expressive communication was seen in USCP (vs BSCP ß [SE]-2.74 [1.06], NSCP ß [SE]-2.67 [1.44]). The difference between the development trajectory levels of children with and without intellectual disability was smaller for children with USCP than for those with BSCP and NSCP. For receptive communication, the most favourable development was found for all children with USCP and for BSCP or NSCP without intellectual disability (vs intellectual disability ß [SE]-4.00 [1.16]). Development of written language was most favourable for children without intellectual disability (vs intellectual disability ß [SE]-23.11 [2.85]). INTERPRETATION: The development of expressive communication was found to be most closely related to type of motor disorder, whereas the development of receptive communication was found to be most closely related to intellectual disability.

Developmental trajectories of social participation in individuals with cerebral palsy: a multicentre longitudinal study.

AIM: This study aimed to determine the developmental trajectories of social participation, by level of gross motor function and intellectual disability, in a Dutch population of individuals with cerebral palsy (CP) aged 1 to 24 years. METHOD: As part of the Pediatric Rehabilitation Research in the Netherlands (PERRIN+), 424 individuals with CP (261 males, 163 females; mean age [SD] 9y 6mo [6y 2mo]; Gross Motor Function Classification [GMFCS] levels I-V [50% level I]; 87% with spastic CP; 26% with intellectual disability) were longitudinally followed for up to 4 years between 2002 and 2007. Social participation was assessed with the Vineland Adaptive Behavior Scales survey. Effects of age, GMFCS level and intellectual disability were analysed using multilevel modelling. RESULTS: The developmental trajectories for individuals in GMFCS levels I to IV did not significantly differ from each other. For individuals without intellectual disability, the degree of social participation increased with age and stabilized at about 18 years. These individuals reached social participation levels similar to typically developing individuals. The trajectories were significantly less favourable for individuals in GMFCS level V and individuals with intellectual disability. INTERPRETATION: Intellectual disability is more distinctive for the development of social participation than GMFCS level. The developmental trajectories will support individuals with CP and their families in setting realistic goals and professionals in optimizing the choice of interventions at an early age.

Personal and environmental factors contributing to participation in romantic relationships and sexual activity of young adults with cerebral palsy.

PURPOSE: To study determinants of romantic relationships and sexual activity of young adults with cerebral palsy (CP), focusing on personal and environmental factors. METHOD: A cohort study was performed with 74 young adults (46 men; 28 women) aged 20-25 years (SD 1.4) with CP (49% unilateral CP, 76% GMFCS level I, 85% MACS level I). All participants were of normal intelligence. Romantic relationships, sexual activity (outcome measures), personal and environmental factors (associated factors) were assessed. Associations were analyzed using logistic regression analyses. RESULTS: More females than males with CP were in a current romantic relationship. Self-esteem, sexual esteem and feelings of competence regarding self-efficacy contributed positively to having current romantic relationships. A negative parenting style contributed negatively. Age and gross motor functioning explained 20% of the variance in experience with intercourse. In addition, sexual esteem and taking initiative contributed significantly to intercourse experience. CONCLUSIONS: For young adults with CP personal factors (20-35% explained variances) seem to contribute more than environmental factors (9-12% explained variances) to current romantic relationships and sexual experiences. We advice parents and professionals to focus on self-efficacy, self-esteem and sexual self-esteem in development of young adults with CP. [ IMPLICATIONS FOR REHABILITATION: • The severity of gross motor functioning contributed somewhat to sexual activities, but not to romantic relationships.• High self-efficacy, self-esteem and sexual self-esteem can facilitate involvement in romantic and sexual relationships for young adults with CP.]

Importance of peers and dating in the development of romantic relationships and sexual activity of young adults with cerebral palsy.

AIM: The aim of this study was to describe the peer group activities, romantic relationships, and sexual activity and their interrelations of young adults with cerebral palsy (CP). METHOD: A cross-sectional study was performed in 87 participants (51 males, 36 females; mean age 20 y 4 mo, SD 1 y 3 mo range age 18-22 y) without cognitive disabilities. Ninety-four per cent had spastic CP and 49% unilateral CP, while 78% were classified at Gross Motor Function Classification System level I and 84% at Manual Ability Classification System level I. Peer group activities, dating, romantic relationships, and sexual activity were assessed with an interview and questionnaire. Associations were analysed using logistic regression analyses. RESULTS: The study cohort reported having friends and participating in activities with peers; 71% had experience of dating, 23% had a current romantic relationship, and 38% had experience of intercourse. Young adults with CP had less experience in romantic and sexual relationships than an age-appropriate Dutch reference population. Peer group activities and dating favoured development of romantic relationships and sexual activity. Older age was associated with greater sexual activity. Motor functioning, education level, and gender did not correlate with romantic relationships or sexual activity. INTERPRETATION: Being involved in peer group activities and creating a context to arrange dates seems relevant for young adults with CP to develop romantic relationships and sexual activity.

Transition to adulthood: validation of the Rotterdam Transition Profile for young adults with cerebral palsy and normal intelligence.

The aim of this study was to investigate the validity of the Rotterdam Transition Profile (RTP) to describe the transition process from childhood to adulthood in young adults with cerebral palsy (CP). Participants were recruited from rehabilitation centres and hospital departments of rehabilitation. In total, 81 young adults (47 males, 34 females) with CP and normal intelligence participated (mean age 20y 5mo [SD 1y 4mo] range 18-22y; 95% spastic CP, 48% hemiplegia, 38% diplegia, 14% quadriplegia; 78% Gross Motor Function Classification System Level I, 83% Manual Ability Classification System Level I). The RTP and the Assessment of Life Habits questionnaire are used to measure transition and functioning in daily activities and participation. Almost all participants were in the transition process or had reached an independent adult lifestyle (ranging from 60-100%, housing 42%). Compared with able-bodied peers, young adults with CP lagged behind in their development in housing (25 vs 36%; p<0.05), employment (33 vs 49%; p<0.05), and intimate relationships (37 vs 76%; p<0.01). Associations were found between the phase of transition and age, parents' level of education, gross motor functioning, manual ability, level of education, and level of functioning in daily activities and participation. The RTP is a valid tool to gain more insight into the transition process, at the individual as well as at group level.

Social, intimate and sexual relationships of adolescents with cerebral palsy compared with able-bodied age-mates.

OBJECTIVE: To describe the social, intimate and sexual relationships of Dutch adolescents with cerebral palsy compared with their able-bodied age mates. DESIGN: Cross-sectional study. SUBJECTS: A total of 103 adolescents with cerebral palsy without severe learning problems aged 16-20 years. METHODS: We used a structured interview and questionnaires to assess subject characteristics such as age, type of cerebral palsy, gross motor function and level of education. Main outcome measures on social, intimate and sexual relationships are the Life-Habits questionnaire, the Vineland Adaptive Behaviour Scale, and a structured interview developed for Dutch studies in able-bodied persons and persons with spina bifida. Experienced competence was assessed with the Dutch version of the Self-Perception Profile of Adolescents and the Physical Disability Sexual and Body Esteem Scale. These data were compared with matching reference data, mainly from able-bodied (Dutch) adolescents. RESULTS: Approximately 30% of the subjects functioned socially below their age level. Adolescents with cerebral palsy find it difficult to develop intimate relationships and they have less sexual experience than their able-bodied age mates. CONCLUSION: Although adolescents with cerebral palsy do have social relationships, it is difficult for them to develop intimate relationships. They perceive various barriers, but seem to have a positive self-perception.

Social and sexual relationships of adolescents and young adults with cerebral palsy: a review.

OBJECTIVE: To investigate possible barriers to successful social and sexual relationships in adolescents and young adults of normal intelligence with cerebral palsy. DESIGN: A literature review based on a PubMed and PsycINFO search for the period 1990-2003. Included were studies focusing on one or more of the outcome parameters (i.e. social, intimate and sexual relationships) or on associated factors that described relationships with the outcome parameters. RESULTS: Fourteen papers were selected. Two studies investigated exclusively people with cerebral palsy whereas 12 concerned people with a congenital disability and/or physical disabilities, including people with cerebral palsy. All studies addressed adolescents or adults of normal intelligence. A. Social and sexual relationships: In social relationships adolescents and young adults with cerebral palsy were less active than their age mates, and dating was often delayed and less frequent. Adolescents with congenital disabilities indicated that sexuality is an important aspect of their lives, but they experienced difficulties developing a sexual relationship. B. Associated factors: Psychological maladjustment, insufficient self-efficacy and low sexual self-esteem may impair the development of social and sexual relationships. Overprotection in raising children with cerebral palsy and the negative attitudes of other people may have a negative influence on the self-efficacy of people with cerebral palsy. CONCLUSION: The reviewed studies suggest many factors that may influence the development of social and sexual relationships in adolescents and young adults with cerebral palsy. However, evidence was found only for the personal factors self-efficacy and sexual self-esteem and their interrelationships with the parents' way of raising their children and successful experiences in social situations.