Search results for ‘Subject term:"cerebral palsy"’ Sort:
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Cerebral palsy in adults: NG119
- Author:
- NATIONAL INSTITUTE FOR HEALTH AND CARE EXCELLENCE
- Publisher:
- National Institute for Health and Care Excellence
- Publication year:
- 2019
- Pagination:
- 64
- Place of publication:
- London
This guideline covers care and support for adults with cerebral palsy. It aims to improve health and wellbeing, promote access to services and support participation and independent living. The guideline is aimed at healthcare and social care practitioners, those responsible for commissioning and providing services, and adults with cerebral palsy, their families and carers. The recommendations relevant to social care practitioners include recommendations on support with communication, vocational skills and independent living, electronic assistive technology and physical activity. The guideline also contains recommendations on access to services and ongoing review, assessing and monitoring mental health needs, assessing and monitoring nutrition. (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)
Experiences of participation in a Swedish society among adults with cerebral palsy or spina bifida: involvement and challenges
- Authors:
- TORNBOM Karin, TORNBOM Marie, SUNNERHAGEN Stibrant
- Journal article citation:
- Journal of Social Work in Disability and Rehabilitation, 12(4), 2013, pp.256-271.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Participation in society is vital to mental health and is beneficial to individuals and society. The goal of this study was to provide insight into how people with cerebral palsy and spina bifida view their experiences of participation and to examine factors that might influence this issue. The results show that participants emphasised the importance of being accepted and treated equally. Living independently and being able to play an active and leading role in their lives was also essential. Participation was described as a process of interaction between a person and society, with mutual responsibility in respect to integration. (Publisher abstract)
The impact of caring for a child with cerebral palsy: quality of life for mothers and fathers
- Authors:
- DAVIS E., et al
- Journal article citation:
- Child: Care, Health and Development, 36(1), January 2010, pp.63-73.
- Publisher:
- Wiley
Although caring for a child with cerebral palsy (CP) can impact on the caregivers’ quality of life (QOL) this has yet to be adequately examined. The aims of this study were to explore the QOL of mothers and fathers of children with CP aged 3–18 years, and examine whether the impact of caring for a child with CP changes from childhood to adolescence. A qualitative study was conducted utilising a grounded theory framework. 24 mothers and 13 fathers of children and adolescents with CP and with varying levels of impairment participated in semi-structured interviews about their QOL. The transcripts were analysed to identify issues affecting parental QOL. Results revealed there were no differences in parental QOL among subgroups - mothers and fathers, age groups, GMFCS levels. Parental QOL ranged across a wide spectrum. Caring for a child with CP affects a parent's physical well-being, social well-being, freedom and independence, family well-being and financial stability. Parents indicated that they often feel unsupported by the services they access. The authors conclude that caring for a child with CP can both positively and negatively impact on a parent's life. If parental concerns and determinants of QOL are considered in overall programme planning and service delivery for children and their families, both parents and children benefit.
Health professionals’ perceptions of feeding-related quality of life in children with quadriplegic cerebral palsy
- Authors:
- MORROW A. M., QUINE S., CRAIG J. C.
- Journal article citation:
- Child: Care, Health and Development, 33(5), September 2007, pp.529-538.
- Publisher:
- Wiley
The aim was to identify the major determinants of feeding-related quality of life (QoL) in children with quadriplegic cerebral palsy (QCP) from the perspective of health professionals to provide a framework for comprehensive clinical evaluation of health status in this group. A trained facilitator conducted five semi-structured focus groups during September and November 2003. Participants were recruited through the two paediatric hospitals in Sydney and community-based services, and included general and specialist paediatricians (n = 18), nurses (n = 15) and allied health professionals (n = 13), with an 80% response rate. All sessions were audio- and videotaped. nvivo software was used to facilitate thematic analysis of the transcribed audiotapes. Responses clustered into five themes: delivery of health services, parent–child interaction, the child’s physical and emotional well-being, and social participation. Participants thought the QoL of child and parent was inseparable. Parent–child interaction, delivery of services and physical well-being were the topics which prompted most participant interaction. These findings did not vary across disciplines. Health professionals identified five domains which provide a framework within which clinicians may comprehensively evaluate the health status of children with QCP and feeding difficulties. These five domains may also be used to inform a new feeding-related QoL instrument for use in this group of patients.
Improving quality of life of children with cerebral palsy: a systematic review of clinical trials
- Authors:
- TSOI W.S.E., et al
- Journal article citation:
- Child: Care, Health and Development, 38(1), 2012, pp.21-31.
- Publisher:
- Wiley
Eight studies aimed at measuring the effects of intervention programmes on quality of life in children with cerebral palsy were included in the review. The interventions varied considerably, as did the measures of quality of life used. There was evidence that some physical and medical treatments can be effective but it was not possible to identify a single intervention that was most useful. A major drawback of most of the studies identified was the lack of a clear definition of quality of life.
Quality of life and leisure participation in children with neurodevelopmental disabilities: a thematic analysis of the literature
- Authors:
- DAHAN-OLIEL Noemi, SHIKAKO-THOMAS Keiko, MAJNEMER Annette
- Journal article citation:
- Quality of Life Research, 21(3), April 2012, pp.427-439.
Nineteen intervention programmes, including quantitative and qualitative studies, were included in this systematic review. Seven themes were identified as shedding light on the association between participation in leisure activities and quality of life in children with neurodevelopmental disabilities. The wide variety of outcome assessment tools and the range of study populations limited the validity of the results. The problems of a lack of consensus on how quality of life and participation in children should be measured, is highlighted.
Course of behaviour problems of children with cerebral palsy: the role of parental stress and support
- Authors:
- SIPAL R. F., et al
- Journal article citation:
- Child: Care, Health and Development, 36(1), January 2010, pp.74-84.
- Publisher:
- Wiley
Cerebral palsy (CP) is a well-recognised neurodevelopmental condition persisting through the lifespan. In many individuals with CP, motor disorders are accompanied by other disturbances, including emotional and behavioural problems. Little is known on the course of such problems, also in relation to possible exacerbating or mitigating factors. This study aimed to test whether parental stress and support played a significant role in the course of behaviour problems. Participants aged 9, 11 and 13 were assessed and followed up after 1, 2 and 3 years. Situational and relational sources of support and stress for the primary caregiver were rated with a questionnaire on behaviour problems using the Child Behaviour Check List. Motor ability was assessed using the Gross Motor Function Classification System. Behaviour problems of children with CP started significantly higher than in the general population, but diminished over the 3-year period. Older children showed fewer problems overall with girls showing fewer externalising problems than boys and children with the most severe CP having more externalising problems. Across time, an excess of stress vs. support related to parents' socio-economic and living situation and to parents' social relationships was positively related to total behaviour problems, both internalizing and externalising. The study concluded that levels of behaviour problems diminish during adolescence for children with CP. Severity of CP plays a role as well as the family context in terms of the stress and support that caregivers experience.
Development of a condition-specific measure of quality of life for children with cerebral palsy: empirical thematic data reported by parents and children
- Authors:
- WATERS E., et al
- Journal article citation:
- Child: Care, Health and Development, 31(2), March 2005, pp.127-135.
- Publisher:
- Wiley
Although there is increasing recognition that quality of life (QOL) and health-related quality of life (HRQOL) are important outcome variables in clinical trials for children with cerebral palsy, there are substantial limitations in existing measures of QOL. This study identify themes of QOL for children with cerebral palsy and their parents to guide the development of a new condition-specific QOL scale. A qualitative study of parent and child views on QOL composition was conducted, using a grounded theory framework. Families participated in semistructured interviews on QOL until thematic saturation was reached (n = 28 families). Overall, 13 themes emerged from the interviews: physical health, body pain and discomfort, daily living tasks, participation in regular physical and social activities, emotional well-being and self-esteem, interaction with the community, communication, family health, supportive physical environment, future QOL, provision of, and access to services, financial stability, and social well-being. Research with parents and children with cerebral palsy, representative of severity across the disease spectrum and socio-economic status, reinforced and expanded on the traditional themes that have underpinned QOL measurement development. This has implications not only for the development of a new QOL scale for children with cerebral palsy, but also for clinical interventions and community care management.
Cerebral palsy: what parents and doctors want to know
- Author:
- ROSENBAUM Peter
- Journal article citation:
- British Medical Journal, 05.05.03, 2003, pp.970-974.
- Publisher:
- British Medical Association
Provides a brief overview of the condition of cerebral palsy and its implications for child development. Looks at the role of the family and how doctors can help, highlights new developments in treatment, and lists a number of website resources for parents and doctors.