Search results for ‘Subject term:"cerebral palsy"’ Sort:
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A systematic review of the self-concept of children with cerebral palsy compared with children without disability
- Authors:
- SHIELDS Nora, et al
- Journal article citation:
- Developmental Medicine and Child Neurology, 48(2), February 2006, pp.151-157.
- Publisher:
- John Wiley and Sons
Six papers met the inclusion and quality criteria for this review of English language studies of how children and adolescents with cerebral palsy feel about themselves. The results show no evidence of a general reduction in self-concept among this group, but adolescent girls may be at risk: in the four studies for which effect sizes could be calculated, this sub-group showed lower scores in the domains of physical appearance, social acceptance, athletic competence and scholastic competence. Clinicians need to monitor and implement appropriate intervention strategies with this group.
Beyond physiotherapy: voices of children and young people with cerebral palsy and their carers about ‘Participation’ in recreational activities (VOCAL)
- Author:
- PICKERING Dawn
- Publisher:
- Cardiff University
- Publication year:
- 2021
- Pagination:
- 342
- Place of publication:
- Cardiff
This thesis is about children and young people with cerebral palsy and the emotional well-being impact from their level of participation in recreational activities. A literature review highlighted the gap in knowledge for non-verbal disabled children with limited mobility, who are usually excluded from research studies. They also have less choices for recreational activities than typically developing children. Very little is known about these disabled children’s perceptions of their own well-being. By centrally positioning their voices at the centre of the enquiry, their agency was heard to facilitate their social justice. The research question explored how children and young people with cerebral palsy and their carers viewed, experienced and chose their level of participation in recreational activities. Evidence of their well-being, was brought out in the analysis. A comparative case study design was developed using visual methods, this enabled the storylines of the children to be socially constructed from the evidence of the social forces at play, in the activities where they were positioned. There were two groups, a Participatory Group (N=4) and a Limited Participatory Group (N=3). The disabled children and young people were aged nine to sixteen years and were supported by their parents in the data collection. Each case included two interviews at the beginning and end of twelve weeks, during which time they kept a diary, observations were carried out at one of their usual activities within this time period. Photographs were taken by the parent and the researcher for context. These photographs were used to elicit discussion in the second interview. The seven cases were analysed by an interpretative approach, using Braun and Clark’s six stages of analysis. Pseudonyms were chosen and care was taken to anonymise photographs used. First the Participatory Group were analysed, then the Limited Participatory Group, then across case analysis was carried out. Three overall themes were identified: 1. Participation enhancers; 2.Champions for disabled children’s emotional well-being; 3.Hindrances to participation. Innovative designs, advocacy and positive attitudes came out as key features that enhanced participation and pain, mood, epilepsy, as well as lack of choices and perceived negative attitudes, hindered participation. Positioning theory has been applied and adapted to represent the well-being of disabled children and young people with a kaleidoscope. This relates to both their physical positioning and agency to choose to participate, or not. This proposed ‘Kaleidoscope of Well-being’ suggests that well-being can fluctuate in different environments, influenced by the social forces of advocates to promote their needs, with specialist equipment. The non-verbal children also showed they could choose not to participate, even when opportunities were offered to them, to determine their own storylines. Those who enjoyed participation included physical activities such as bike riding, surfing, skiing, and trampolining, but there were less choices in the arts and cultural based activities, which were more sensory based. Having the social confidence to relate to non-verbal children was seen as helpful, but there were many examples where this was missing, perceived as negative attitudes. Currently the needs of these disabled children and young people are overlooked, reducing their social justice as valued citizens in society. Policy makers, designers of equipment and environments could take notice of these findings, to consider how to move the boundaries further of what might be possible to increase the choices for non-verbal children with mobility limitations. Practitioners should consider how they include participation as an outcome from their interventions, which at a minimum requires signposting to available choices. There is a need to explore how health and social care professionals perceive the role of advocacy with disabled children and young people, to enhance the children’s participatory opportunities. Further research requires a cross-disciplinary approach to address the complexities of non-mobile, non-verbal disabled children and young people’s participation in recreational activities. This should focus on increasing their choices, to enhance their well-being and visual methods should be developed further to illuminate the experiences of non-verbal children. (Edited publisher abstract)
How do adolescents with cerebral palsy participate? Learning from their personal experiences
- Authors:
- WINTELS Sophie Catharina, et al
- Journal article citation:
- Health Expectations, 21(6), 2018, pp.1024-1034. Online only
- Publisher:
- Wiley
Background: Participation in society can be difficult for adolescents with cerebral palsy (CP). Information is often based on quantitative studies, and little is known about their personal participation experiences. Objective: The aim of this study was to examine the participation experiences of adolescents (aged 12‐17 years) with CP. Methods: A qualitative participatory research method was used. Twenty‐three semi‐structured open interviews were conducted with 13 male and 10 female adolescents (mean age 15 years) with CP. An interview checklist was developed jointly with adolescents with CP. This checklist ensured that the adolescents reflected on various participation areas, that is school, sports, health care and work. The analysis was based on principles of grounded theory. Findings: From the adolescents’ experiences, 4 key categories were identified. One concerned participation, as such, expressed as “My participation experiences,” including experiences, thoughts and feelings while participating in daily life. Three other categories concerned factors that influence participation experiences, expressed as “My disability,” “Me as a person” and “My environment.” These 4 categories together formed a model showing the interactions and dynamics of participation according to adolescents with CP. Conclusion: Adolescents with CP expressed their participation experiences, including various important influencing factors. This study conceptualized these experiences into a dynamic model. This experience‐based participation model may provide new, personalized perspectives for practice, for instance in rehabilitation, but also for schools and sports (or sports clubs) attended by adolescents. Focusing on personal and environmental factors might be the key to successful participation. (Edited publisher abstract)
"If I had been given that information back then": an interpretive description exploring the information needs of adults with cerebral palsy looking back on their transition to adulthood
- Authors:
- FREEMAN M., et al
- Journal article citation:
- Child: Care, Health and Development, 44(5), 2018, pp.689-696.
- Publisher:
- Wiley
Background: Young people with cerebral palsy (CP) and their families have identified lack of information received during the transition to adulthood as a barrier to successful outcomes. To date, few studies have explored the information needs, preferences, timing, and method of provision from the perspective of individuals with CP. Method: The methodological approach to this qualitative study was interpretive description. Nine adults living with CP, between the ages of 20 and 40, were purposively recruited in Ontario, Canada, to explore, retrospectively, their information needs during the transition to adulthood. Participants completed a 1‐hour interview that explored their experiences seeking and receiving information. Interviews were transcribed verbatim, and data were analysed to create a thematic description of adults' experiences with information. Results: Three themes emerged: (a) “Recognizing and supporting information needs,” which highlighted the importance of support systems to assist young people in receiving and seeking information throughout the transition; (b) “Getting creative,” which highlighted strategies young people use when confronted with environmental barriers when seeking information; and (c) “Gaps and advice for the future,” which highlighted the need for real‐life opportunities, during the transition to adulthood, to experience some of the responsibilities of adult life. Conclusion: Clinicians assisting young people with CP need purposefully to foster knowledge and skills during the transition to adulthood. They should be not only providers of information but also enablers of opportunities for immersion in real‐life experiences to prepare for adult life. It is important for young people to have the opportunity to discuss challenges and exchange information with their peers. (Edited publisher abstract)
Understanding frames: a qualitative study of young people's experiences of using standing frames as part of postural management for cerebral palsy
- Authors:
- GOODWIN J., et al
- Journal article citation:
- Child: Care, Health and Development, 44(2), 2018, pp.203-211.
- Publisher:
- Wiley
Background: Consensus opinion supports standing frame use as part of postural management for nonambulant young people with cerebral palsy. Although the rationale for standing frame use and the associated challenges have been described, little attention has been given to the users' experiences. The aim of the current study was to explore young people's positive and negative experiences, and attitudes regarding standing frame use. Methods: Framework analysis informed an open exploration of young people's opinions of standing frames. Using semistructured interviews, 12 young people with cerebral palsy (6 female) were interviewed, providing the data set for transcription and thematic analysis. Findings: The first theme “attitudes to standing frames” describes the young people's understanding of why they use standing frames. Although standing frames can be painful, some young people believe they should be endured to improve their body structure and function. There were mixed views about the impact standing frames have socially, with some young people feeling excluded from their peers, and others feeling as though standing frames helped them “fit in.” Some young people are not offered a choice about how and when they use their standing frame. The second theme “challenges of standing frame use” highlights the issues with standing frame use such as manual handling, interference from siblings, and the lack of aesthetically pleasing standing frame designs. Conclusions: Young people report benefits related to choice, pain relief, and participation but can also cause pain, discomfort, and reduced independence and participation. Healthcare professionals should have open, informative conversations about potential benefits and challenges of standing frames on all aspects of the young people's lives, including participation and activity. (Edited publisher abstract)
Exploring quality of life of children with cerebral palsy and intellectual disability: what are the important domains of life?
- Authors:
- DAVIS E., et al
- Journal article citation:
- Child: Care, Health and Development, 43(6), 2017, pp.854-860.
- Publisher:
- Wiley
Background: Although it is estimated that half of all children with cerebral palsy also have comorbid intellectual disability, the domains of quality of life (QOL) important for these children are not well understood. The aim of this study was to identify important domains of QOL for these children and adolescents. Methods: Due to the children's communication impairments, qualitative semi‐structured interviews were conducted with 18 parents. The children (9 males) had a median age of 12 (range 7 to 17) years at interview and nearly two thirds were classified as Gross Motor Function Classification System IV or V. A grounded theory approach was used to identify domains of QOL. Results: The 11 domains identified as important to QOL were physical health, body comfort, behaviour and emotion, communication, predictability and routine, movement and physical activity, nature and outdoors, variety of activity, independence and autonomy, social connectedness, and access to services. Conclusions: The domains of QOL that emerged from this study will be useful for professionals who support children with cerebral palsy and their families. They will also be important for developing a QOL instrument essential for informing the development of interventions and their monitoring and evaluation. (Edited publisher abstract)
Working through physical disability in psychoanalytic psychotherapy with an adolescent boy
- Authors:
- FLOROU Aliki, et al
- Journal article citation:
- Psychoanalytic Social Work, 23(2), 2016, pp.119-129.
- Publisher:
- Taylor and Francis
The narcissistic injury that may be caused by physical disability in infancy and the possible familial traumatization may block the integration of the infant's body and self-image, and can consequently hinder the child's identity formation. This article presents how an adolescent boy with cerebral palsy in short-term psychoanalytic psychotherapy works through the mental impact of his physical disability using a story. Transference and countertransference reactions are discussed. The positive impact of short-term psychoanalytic psychotherapy highlights the importance of caring for the mental health of children with physical impairments. (Publisher abstract)
Rehabilitation service utilization in children and youth with cerebral palsy
- Authors:
- MAJNEMER Annette, et al
- Journal article citation:
- Child: Care, Health and Development, 40(2), 2014, pp.275-282.
- Publisher:
- Wiley
Aim: To describe the pattern of use of rehabilitation services in children and adolescents with cerebral palsy (CP), and to identify factors associated with use. Methods: In this study, parents of 91 school-age children and 167 adolescents with CP completed a questionnaire regarding educational and rehabilitation resources received within the last 6 months. Rehabilitation services included occupational therapy (OT), physical therapy (PT), speech language pathology (SLP), psychology and special education. Demographic characteristics were documented and developmental and functional status was assessed. Relationships between service utilisation and sociodemographic factors, functioning and school setting were determined. Results: Over half of children (53.2%) and adolescents (57.5%) were in regular schools; however, 41% of these required special education resources. The remainder (42.5–46.8%) was in special schools. The majority of children (84.6%) were receiving at least one rehabilitation service although this decreased (68.1%) in adolescence. PT and OT were most common and services were provided predominantly in the school setting. Services were primarily weekly direct interventions at school age, with weekly interventions or consultations most common for adolescents. Younger age was associated with service receipt at school age only. Children with greater motor limitations, lower IQ and greater activity limitations were more likely to receive OT, PT, SLP or special education. Children in segregated schools were significantly more likely to receive rehabilitation services, when compared with children in regular schools. Conclusions: The majority of children and youth received one or more services. Individuals with greater motor or cognitive challenges were more likely to receive a range of school-based services from rehabilitation specialists. When compared with children of school age, adolescents were less likely to receive services and when provided, services were more likely to be consultative. Services may need to be more optimally organised through childhood to enhance benefits to children with CP across activity limitation profiles. (Edited publisher abstract)
Cross-cultural validation of the Children's Assessment of Participation and Enjoyment (CAPE) in Spain
- Authors:
- LONGO E., et al
- Journal article citation:
- Child: Care, Health and Development, 40(2), 2014, pp.231-241.
- Publisher:
- Wiley
Background: Despite growing interest in the topic of participation, the construct has not yet been assessed in children and adolescents with and without cerebral palsy (CP) in Spain. As there are no available instruments to measure participation in leisure activities which have been adapted in this country, the goal of this study was to validate a Spanish version of the Children's Assessment of Participation and Enjoyment (CAPE). Method: The sample comprised 199 children and adolescents with CP and 199 without CP, between 8 and 18 years of age, from seven regions in Spain. The adaptation of the original version of CAPE was carried out through translation and backward translation, and the validity of the instrument was analysed. Construct validity was assessed through the correlation of the diverse CAPE domains and the quality of life domains (KIDSCREEN questionnaire). Discriminant validity was established by comparing children and adolescents with CP and typically developing children and adolescents. For test–retest reliability, the children and adolescents with and without CP completed the CAPE questionnaire twice within 4 weeks. Results: The correlations found between the CAPE domains and the quality of life domains show that the CAPE presents construct validity. The CAPE discriminated children and adolescents with CP from those without any disability in the results of participation. According to most CAPE domains, typically developing children and adolescents engage in a greater number of activities than children and adolescents with CP. Test–retest reliability for the Spanish version of CAPE was adequate. Conclusion: The study provides a valid instrument to assess the participation of children and adolescents with and without CP who live in Spain. (Publisher abstract)
Speech, communication and use of augmentative communication in young people with cerebral palsy: The SH&PE population study
- Authors:
- COCKERILL H., et al
- Journal article citation:
- Child: Care, Health and Development, 40(2), 2014, pp.149-157.
- Publisher:
- Wiley
Background: Communication is frequently impaired in young people (YP) with bilateral cerebral palsy (CP). Important factors include motoric speech problems (dysarthria) and intellectual disability. Augmentative and Alternative Communication (AAC) techniques are often employed. The aim was to describe the speech problems in bilateral CP, factors associated with speech problems, current AAC provision and use, and to explore the views of both the parent/carer and young person about communication. Methods: A total population of children with bilateral CP (n = 346) from four consecutive years of births (1989–1992 inclusive) with onset of CP before 15 months were reassessed at age 16–18 years. Motor skills and speech were directly assessed and both parent/carer and the young person asked about communication and satisfaction with it. Results: Sixty had died, eight had other conditions, 243 consented and speech was assessed in 224 of whom 141 (63%) had impaired speech. Fifty-two (23% of total YP) were mainly intelligible to unfamiliar people, 22 (10%) were mostly unintelligible to unfamiliar people, 67 (30%) were mostly or wholly unintelligible even to familiar adults. However, 89% of parent/carers said that they could communicate 1:1 with their young person. Of the 128 YP who could independently complete the questions, 107 (83.6%) were happy with their communication, nine (7%) neither happy nor unhappy and 12 (9.4%) unhappy. A total of 72 of 224 (32%) were provided with one or more types of AAC but in a significant number (75% of 52 recorded) AAC was not used at home, only in school. Factors associated with speech impairment were severity of physical impairment, as measured by Gross Motor Function Scale level and manipulation in the best hand, intellectual disability and current epilepsy. Conclusions: In a population representative group of YP, aged 16–18 years, with bilateral CP, 63% had impaired speech of varying severity, most had been provided with AAC but few used it at home for communication. (Publisher abstract)