Diana Wiegerink

Determinants of functioning of adolescents and young adults with cerebral palsy

Purpose. To describe the level of functioning of adolescents and young adults with cerebral palsy (CP) and study determinants of their level of functioning. Method. In the CP Transition study, adolescents and young adults aged 16 – 20 years, diagnosed with CP without severe learning disabilities (n = 103) participated. In this group we assessed subject characteristics, i.e., age, type of CP, gross motor function (GMFCS), level of education as well as outcome measures on functioning in daily activities and social participation (Life Habits questionnaire, Vineland Adaptive Behavior Scale, Functional Independence Measure). Multivariate regression analyses were performed. Results. About 20 – 30% of the participants encountered restrictions in daily activities (mobility, self-care, nutrition) and social participation (taking responsibility, community living, leisure activities and employment). The GMFCS level, level of education, and age proved to be important determinants of functioning in daily activities and social participation, explaining 70% and 66% of the variance in outcome respectively. Conclusion. A significant number of adolescents and young adults with CP without severe learning disabilities are restricted in daily activities and social participation. These problems are mainly attributable to restricted gross motor functioning, a low level of education and younger age.

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.

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).

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

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).

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

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.

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.