Participating in social activities can be challenging for a person with cerebral palsy for a variety of reasons. Children with cerebral palsy often have to attend special schools for the physically impaired, which sets them apart from other "normal" children. On the other hand, when a child with cerebral palsy attends a typical school, he or she is usually a prime target for teasing and other social ostracism. Children the disease experience more than the average child's trouble with social adjustment, and tend to be socially immature. Older children with cerebral palsy find it difficult to foster intimate relationships with others, and adults with the disease experience a great deal of loneliness.
Purpose. To review research that examined the participation in activities of children who have cerebral palsy, in order to understand their extent of participation and the factors that influenced participation.
Methods. A comprehensive search of seven databases retrieved 2,111 papers, 40 of which met criteria and were relevant for critique. As this paper intended to examine participation broadly, an ecological framework was used to organise the relevant papers into those studies that considered personal, environmental and occupational factors related to participation.
Results. Children with cerebral palsy participated in a diverse array of activities across a range of occupational contexts. Their participation was not always a positive experience. Factors most commonly identified as barriers to participation were social attitudes and the physical environment. This review identified only emergent understandings of the naturally occurring changes in the participation of children with cerebral palsy that come with increasing age and, concurrently, with increasing social and environmental demands.
Conclusions. Future research designs must accommodate the complexity of participation to further our knowledge and improve our ability to target therapeutic interventions at community, family and child levels.
[Imms, C. (2008). Children with cerebral palsy participate: A review of the literature. Disability and Rehabilitation, 30(24), 1867-84.]
Purpose. To compare three dimensions of social adjustment (social status, friendship and victimization) across four groups of children between the ages of nine and 12 who differ by their birth status (premature vs. at term) and the presence or absence of a motor impairment (with and without cerebral palsy [CP]).
Method. All premature (n = 72) and term children (n = 118) without CP and all children with CP (premature with CP: n = 49; term with CP: n = 29) are part of a follow-up study. Social adjustment measures were obtained by conducting a classwide sociometric interview in the class of the target child.
Results. Irrespective of their birth status, girls with CP have more social adjustment problems than those without a disability. With respect to victimization, the results show that, irrespective of gender, both CP children and premature children (without CP) differ from their term peers (without CP).
Conclusions. By comparing the four groups, we are able to qualify the impact of a visible clinical impairment such as CP versus that of extreme prematurity on social adjustment.
[Nadeau, L. & Tessier, R. (2008). Social adjustment at school: Are children with cerebral palsy perceived more negatively by their peers than other at-risk children? Disability and Rehabilitation, 1-7 [epublication ahead of print].]
The aim of this study was to describe the social experience of children with cerebral palsy (CP) in mainstream classes in Canada and compare it with that of their classmates without disability. The CP group included 25 females and 35 males (mean age 10 y 5 mo [SD 0.95], range 10 y 4 mo-10 y 10 mo) diagnosed as having hemiplegia (n=44) or diplegia (n=16) and classified as Level I on the Gross Motor Function Classification System (GMFCS). Fifty-seven comparison children, born at term and without any motor and/or sensory impairment, were recruited from the classes of the children with CP during a school visit (mean age 10 y 3 mo, [SD 1.0], range 10 y-10 y 6 mo). They were matched to children with CP for sex, age, parents' education level, and family income. Social adjustment measures (social status, reciprocated friendships, social isolation, aggression, sociability/leadership, and verbal and/or physical victimization) were obtained by conducting a class-wide sociometric interview (n=943) in the classes of the children with CP. Findings showed that children with CP (specifically females with CP and irrespective of their type of disability) had fewer reciprocated friendships, exhibited fewer sociable/leadership behaviours, and were more isolated and victimized by their peers than their classmates without a disability. This seems to suggest that females and males with CP are perceived differently from their peers in a mainstreaming context. The discussion addresses the issue of age- and sex-related differences and provides avenues of intervention relating to personal and environmental factors that could facilitate or interfere with the social experience of children with CP in a mainstream environment.
[Nadeau, L. & Tessier, R. (2006). Social adjustment of children with cerebral palsy in mainstream classes: Peer perception. Developmental Medicine and Child Neurology, 48(5), 331-6.]
Participation in home, school and community is important for all children; and little is known about the frequency of participation of disabled children. Frequency of participation is a valuable outcome measure for evaluating habilitation programmes for disabled children and for planning social and health services. We investigated how frequency of participation varied between children with cerebral palsy and the general population; and examined variation across countries to understand better how the environmental factors such as legislation, public attitudes and regulation in different countries might influence participation. We undertook a multi-centre, population-based study in children with and without cerebral palsy. Working from the Life-H instrument, we developed a questionnaire to capture frequency of participation in 8-12-year-old children. In nine regions of seven European countries, parents of 813 children with cerebral palsy and 2939 children from the general populations completed the questionnaire. Frequency of participation for each question was dichotomised about the median; multivariable logistic regressions were carried out. In the general population, frequency of participation varied between countries. Children with cerebral palsy participated less frequently in many but not all areas of everyday life, compared with children from the general population. There was regional variation in the domains with reduced participation and in the magnitude of the differences. We discuss how this regional variation might be explained by the different environments in which children live. Attending a special school or class was not associated with further reduction in participation in most areas of everyday life.
[Michelsen, S. I., Flachs, E. M., Uldall, P., Eriksen, E. L., McManus, V., Parkes, J., Parkinson, K. N., Thyen, U., Arnaud, C., Beckung, E., Dickinson, H. O., Fauconnier, J., Marcelli, M. & Colver, A. (2008). Frequency of participation of 8-12-year-old children with cerebral palsy: A multi-centre cross-sectional European study. European Journal of Paediatric Neurology [epublication ahead of print].]
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.
[Wiegerink, D. J., Roebroeck, M. E., Donkervoort, M., Cohen-Kettenis, P. T., Stam, H. J. & Transition Research Group South West Netherlands. (2008). Social, intimate and sexual relationships of adolescents with cerebral palsy compared with able-bodied age-mates. Journal of Rehabilitation Medicine, 40(2), 112-8.]
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.
[Wiegerink, D. J., Roebroeck, M. E., Donkervoort, M., Stam, H. J. & Cohen-Kettenis, P. T. (2006). Social and sexual relationships of adolescents and young adults with cerebral palsy: A review. Clinical Rehabi
litation, 20(12), 1023-31.]
BACKGROUND: There is a large body of research focusing on the experiences of loneliness of older adults, yet little is known about the loneliness experiences of older adults with lifelong disability. In this paper, the authors present some findings from a larger qualitative study on the loneliness experiences of older people with cerebral palsy.
METHOD: Seven older adults with cerebral palsy participated in in-depth interviews. Analysis of the interviews identified overarching themes and recurrent topics in the data. These topics were coded and then grouped under the overarching themes.
RESULTS: Six themes were identified. All participants agreed that the themes of communication and social networks are most important when considering loneliness. In this paper, the participants' discussion of these two themes and their related topics are presented.
CONCLUSIONS: The results demonstrate the need to provide support and training in communication to older people with cerebral palsy who experience communication difficulty, as well as to their communication partners. They also indicate the need for policy development to assist older adults with cerebral palsy to develop and maintain their social networks and form relationships that are rewarding and enriching.
[Ballin, L. & Baladin, S. (2007). An exploration of loneliness: Communication and the social networks of older people with cerebral palsy. Journal of Intellectual & Developmental Disability, 32(4), 315-26.]
PURPOSE: To use the University of California Los Angeles Loneliness Scale Version 3 to (a) explore and compare the levels of loneliness experienced between two groups of older adults (aged 40 years and over) with cerebral palsy, a group who use natural speech to communicate and a group who use augmentative and alternative communication (AAC) and (b) to test the reliability of the UCLA Loneliness Scale (Version 3) when used with the older adults with cerebral palsy who use a variety of communication modes.
METHOD: The UCLA Loneliness Scale (Version 3) was administered twice to two groups of older participants with cerebral palsy. Group 1 consisted of 11 participants who used natural speech and Group 2 consisted of nine participants who used augmentative and alternative communication systems. The scores from the second assessment were used to calculate test retest reliability.
RESULTS: The mean loneliness scores for the two groups indicated that older people with cerebral palsy experience more loneliness than older adults without disability. There was no significant difference between the scores of Groups 1 and 2. The UCLA Loneliness Scale (Version 3) is a reliable tool for use with people who communicate using a variety of communication modes.
CONCLUSIONS: The UCLA Loneliness Scale (Version 3) items are pertinent to participants' perceived satisfaction with the quantity and quality of their relationships with others. Policy makers, service providers and the general community have a responsibility to ensure that older people with cerebral palsy are given the support they need to achieve satisfactory relationships and thus facilitate a good quality of life as they age.
[Baladin, S., Berg, N. & Waller, A. (2006). Assessing the loneliness of older people with cerebral palsy. Disability and Rehabilitation, 28(8), 469-79.]
The aim of this study was to use family-assessed instruments and details of children's impairments to explore factors affecting the activities and participation of children with cerebral palsy (CP). A postal survey was conducted with families of a geographically defined population of children with CP aged 6 to 12 years. Family-assessed indices of children's activities and participation were the Activities Scale for Kids (ASK) and Lifestyle Assessment Questionnaire (LAQ-CP). Families also assessed children's abilities using the Gross Motor Function and Manual Ability Classification Systems (GMFCS; MACS). Details of children's impairments were available from the 4Child epidemiological database and used with the GMFCS and MACS as explanatory variables in multiple regression analyses to identify their effect on children's activities and participation. Families of 175/314 (56%) children returned an assessment using the GMFCS and 129 (41%) children participated fully by returning all the questionnaires. Full participants (72 males, 57 females) did not differ from those who did not take part by their age, sex, CP characteristics, or associated impairments: GMFCS Level I-25, Level II-43, Level III-15, Level IV-14, Level V-23; MACS Level I-14, Level II-30, Level III-18, Level IV-13, Level V-13. Scores for the ASK and LAQ-CP Physical Independence and Mobility domains were predicted well by children's movement, manual, and intellectual disability, and also, to some extent, by the presence of seizures or speech problems. LAQ-CP domains for Economic and Clinical Burden and Social Integration were not well explained by children's abilities and impairments. Family assessment, therefore, offers a useful method for measuring children's activities and participation; however, currently available instruments do not fully represent all the domains in the International Classification of Functioning, Disability and Health. Children's abilities only partially explain their activities and participation.
[Morris, C., Kurinczuk, J. J., Fitzpatrick, R. & Rosenbaum, P. L. (2006). Do the abilities of children with cerebral palsy explain their activities and participation? Developmental Medicine and Child Neurology, 48(12), 954-61.]
The aim of this study was to investigate the participation of children with cerebral palsy (CP) in activities outside school and to compare their participation with a large representative sample of children. A population-based survey was conducted of children with CP born in Victoria, Australia in 1994 and 1995. Of 219 living children identified, 114 (52.1%) returned completed surveys. The children (65 males, 49 females) were aged between 10 years 9 months and 12 years 9 months (mean age 11y 9mo, SD 6mo). Thirty-eight per cent had hemiplegia, 23% diplegia, 4% triplegia, 34% quadriplegia, and 1% was of unknown topography. Distribution according to the Gross Motor Function Classification System (GMFCS) was 22.8% Level I, 36% Level II, 10.5% Level III, 8.8% Level IV, and 21.9% Level V. Distribution according to the Manual Ability Classification System (MACS) was: 19.3% Level I, 38.6% Level II, 14.0% Level III, 8.8% Level IV, and 19.3% Level V. Participation was measured using the Children's Assessment of Participation and Enjoyment. Participation in selected sport, cultural, and quiet leisure activities was compared with population-based data for 11-year-olds from the Australian Bureau of Statistics. Children with CP undertook a median of 26.5 activities (interquartile range 10) in 4 months which were commonly informal rather than formal. Intensity of participation was low. Diversity and intensity of participation was similar for children in each level of the MACS and the GMFCS, except for participants in Level V. More children with CP participated in organized sports (p<0.001) compared with other Australian children, although with lower frequency (p<0.001). Participation diversity and level of intensity of Australian children with CP were similar to those reported in a Canadian study.
[Imms, C., Reilly, S., Carlin, J. & Dodd, K. (2008). Diversity of participation in children with cerebral palsy. Developmental Medicine and Child Neurology, 50(5), 363-9.]
Social integration and independence is the ultimate goal of habilitation and social support for patients with cerebral palsy (CP). Having a partner and having children provide support for social integration of adults with or without a disability. We studied 416 participants with CP born between 1965 and 1970 (243 males, 173 females; mean age 32 y 2 mo [SD 2 y]; age range 29-35 y) and compared them with 2247 age-matched comparison individuals. Diagnostic subtypes of the 416 participants were: 31% hemiplegia, 49% diplegia, 11% tetraplegia, and 9% other types. The level of motor impairment, estimated in childhood, with regard to walking ability was 65% able to walk without assistance, 22% with assistance, and 12% not able to walk (for 1% of the participants their walking ability was not known). We found no sign of increased social integration over the past two or three decades in Denmark. Sixty-eight per cent lived independently, 13% lived with their parents, and 16% lived at an accommodation facility arranged by the county (institution). Twenty-eight per cent of the participants were cohabiting and 19% had children. The presence of epilepsy and the severity of physical or cognitive impairment as assessed in childhood predicted independent living and physical and cognitive impairment predicted cohabitation, but parents' socioeconomic position and region of living did not. Fifty-five percent of the participants, compared with 4% of the comparison group, had no competitive employment, cohabiting partner, or biological children. The remaining participants had at least one of these types of social contact, but this more optimally socially integrated half of the participants only combined all three types of social contact half as often as the comparison group. This could be due to cognitive difficulties or premature ageing.
[Michelsen, S. I., Uldall, P., Hansen, T. & Madsen, M. (2006). Social integration of adults with cerebral palsy. Developmental Medicine and Child Neurology, 48(8), 643-9.]
OBJECTIVE: To assess the social and employment status of adults with cerebral palsy. DESIGN: Detailed medical history, physical examination, and functional rating in the PULTIBEC system were performed on all study participants; they also responded to a standardized social adaptation questionnaire.
SETTING: Outpatient clinic.
SUBJECTS: Volunteer participants (n = 101), all with cerebral palsy, between the ages of 27 and 74 years, living independently in the community. RESULTS: More than 80% wished that their physician knew more about cerebral palsy. The majority (84%) felt their parents overprotected them in childhood. More than 90% desired more sexual education. More than half (67%) lived independently, 34% with and 33% without attendant. Of the 53% who were competitively employed, 22% earned an income high enough that advancement would cause financial loss through termination of disability benefits. Speech deficits severely compromised functional verbal communication in 50%. Type of employment correlated more with adequate cognition than with physical or communicative impairments.
CONCLUSIONS: Compared with earlier studies, the present study showed more adults with cerebral palsy achieving competitive employment and independent living, despite moderate to severe physical disability. Advances in rehabilitation technology, better home support services, and legal mandates in education and environmental access may have facilitated positive change for persons with cerebral palsy. Further studies are encouraged with emphasis on longitudinal designs.
[Murphy, K. P., Molnar, G. E. & Lankasky, K. (2000). Employment and social issues in adults with cerebral palsy. Archives of Physical Medicine and Rehabilitation, 81(6), 807-11.]