Community-based study of health-related quality of life in spinal cord injury,muscular dystrophy,multiple sclerosis,and cerebral palsy

Purpose: To assess health-related quality of life (HRQOL) in adults with spinal cord injury (SCI), muscular dystrophy (MD), multiple sclerosis (MS), and cerebral palsy (CP). Methods: This is a multicenter, community-based, cross-sectional study of adults diagnosed with CP (94), MD (99), MS (98), SCI (99), and healthy adults (105). The WHOQOL-BREF and WHOQOL-DIS questionnaire were used. Results: Significant differences in physical functioning between adults with CP and SCI and adults with MS (p?=?0.003 and p < 0.001, respectively), as well as between adults with SCI and MD (p?=?0.001) were found. Univariate tests revealed significant psychological functioning differences between adults with SCI and MD (p?=?0.02) and SCI and MS (p?=?0.001). There was a significant difference in physical functioning between controls and adults with SCI (p?=?0.049) and a significant difference in psychological functioning between controls and adults with MS (p?=?0.039). No statistically significant differences were found between the groups in social and environmental domains. Conclusions: Physical and physiological functioning were affected to various degrees in the studied neurodisabilities, while all groups reported similar levels of functioning and well-being in social and environmental domains.

Implications for Rehabilitation

• Health-related quality of life (HRQOL) in adults with neurodisabilities living in a community differs from HRQOL in these individuals sampled in clinical and/or rehabilitation settings.

• Psychosocial aspects of HRQOL relevant to physical disability were similarly affected across those groups.

• Physical and physiological domains in HRQOL were affected to various degrees among adults with neurodisabilities living in a community.

• Levels of functioning and well-being in social and environment domains of HRQOL are similar among adults with neurodisabilities living in a community.

• Community-based study of health-related quality of life in spinal cord injury, muscular dystrophy, multiple sclerosis, and cerebral palsy.

     

Looking to the future: adolescents with cerebral palsy talk about their aspirations – a narrative study

Purpose: To explore the future hopes and aspirations of adolescents with cerebral palsy (CP) with a particular focus on their reflections on engagement in leisure activities. Method: This qualitative study used narrative inquiry methodology. Ten adolescents, aged 14–16 years with CP and Manual Ability Classification System levels ranging from I–IV, were purposively sampled from a longitudinal study of leisure participation. Data were gathered during two face–face interviews conducted approximately 1 month apart. Between interviews, photographs were taken by the adolescents to represent their visions of their future aspirations. In accordance with narrative inquiry methodology, the results were presented as individual stories constructed by the researcher. These narratives were subsequently analysed to produce themes representing the participants’ reflections on their future. Results: Three themes were developed: (i) Keeping close relationships, (ii) Choosing a future life of one’s own, (iii) Leisure in the years ahead. All the adolescents had aspirations for education, work, leisure and living situation. Conclusion: This study highlights the value of seeking information from adolescents with CP and suggests clinicians be aware of, and work to support their expectations for future study, employment and recreational engagement.

Implications for Rehabilitation

• To our knowledge, this is the first recent study to describe the aspirations of adolescents with cerebral palsy. The study findings reinforce the value of seeking information directly from the adolescents themselves.

• These adolescents with cerebral palsy had clear aspirations for future education, work, fun, friendship and travel. Although these aspirations seem common to us all, recent research into adult outcomes suggests adolescents with cerebral palsy will need focused support to attain their goals.

• The results highlight the need for educational and health professionals to be future-focused, to take a lifespan perspective, when working with adolescents with childhood disability.

     

Social support and adaptation outcomes in children and adolescents with cerebral palsy

Abstract

Objectives: This study had two main objectives: first, to describe the social support and psychological maladjustment of children and adolescents with cerebral palsy (CP); and second, to test a mediation model where psychological maladjustment was hypothesized to mediate the link between social support and health-related quality of life (HRQL). In addition, the moderating role of gender and age was examined for this mediation model. Methods: Self- and proxy-report questionnaires on the aforementioned variables were administered to a sample of 96 children/adolescents with CP and 118 healthy controls, as well as one of their parents. Univariate and multivariate analyses of covariance were conducted to examine differences in social support and psychological maladjustment, respectively. PROCESS computational tool was used for path analysis-based mediation, moderation and moderated mediation analyses. Results: Children/adolescents with CP reported lower levels of social support than their healthy peers, but no significant differences emerged in terms of their psychological maladjustment. For children/adolescents with CP, internalizing and externalizing problems were found to mediate the link between social support and HRQL, and these indirect effects were not conditional upon age or gender. Discussion: Children and adolescents with CP are likely have more negative perceptions of social support, but not necessarily more psychological adjustment problems than their healthy, able-bodied peers. Results further suggest that interventions targeting social support perceptions may positively affect HRQL outcomes in children/adolescents with CP, through the improvement of internalizing and externalizing dimensions of their psychological adjustment.

• Implications for Rehabilitation

• Social support perceptions are important intervention targets in psychosocial rehabilitation with children and adolescents with CP.

• Children and adolescents with CP do not necessarily present increased psychological maladjustment.

• Interventions targeting these children and adolescents’ social support may promote their psychological adjustment and health-related quality of life.

• Developmental specificities, such as age and gender differences, should be considered when planning and implementing psychosocial interventions.

     

Exploring the later life relationship between adults with cerebral palsy and their non-disabled siblings

Abstract

Purpose: Adults with moderate or severe cerebral palsy often require significant lifetime support from family and formal services. The aim of this study was to use a life course approach to explore how previous life experiences impact on the later life relationships of people with moderate to severe cerebral palsy aged 40 years and over and their non-disabled siblings. Method: Twelve adults with moderate to severe cerebral palsy and 16 of their non-disabled siblings were interviewed twice to explore their relationships. Constructivist grounded theory method was used to analyse the data. Results: Four themes were identified as important in understanding these later life sibling relationships: sharing childhood experiences, contact in adulthood, diminishing parental role and increasing support needs. Conclusions: The life course approach indicated that siblings’ growing up together was important for the development and maintenance of emotional closeness later in life. Emotional closeness and familial obligation were important factors in motivating siblings with and without cerebral palsy to maintain or re-establish contact with each other in adulthood. Maintenance of sibling relationships in later life is dependent on health, proximity and the ability to keep in contact with each other.

• Implications for Rehabilitation

• As adults with severe cerebral palsy live longer, their relationships with non-disabled siblings often take on increased importance and particularly as their parents may be no longer able to provide support.

• Service providers have a role in helping ageing siblings with and without disability to maintain and build their relationships, for example, by supporting geographically distant siblings to keep in touch.

• Service providers have a role in supporting the person with a disability and their siblings to make plans for the future.

     

Fatigue in the mothers of children with cerebral palsy

Purpose: To evaluate fatigue in the mothers of children with cerebral palsy (CP), and to determine its associations with clinical parameters of CP, depression and quality of life (QoL). Method: Ninety children (50 girls and 40 boys) with spastic CP and their mothers were included. Control group comprised mothers of healthy children. Gross motor function classification system (GMFCS) was used for determining functional status. Spasticity was evaluated by using modified Ashworth scale. Fatigue symptom inventory (FSI) was used for assessing maternal fatigue, Nottingham health profile (NHP) for maternal QoL, and Beck Depression Scale (BDS) for maternal depression. Results: Mothers of children with CP scored significantly higher in all FSI subgroups (intensity of fatigue, duration of fatigue and interference with QoL), all NHP subgroups and BDS (p?p?< 0.01). No association was found between FSI and clinical parameters of children with CP including age, gender, type of CP, tonus and functional impairment (p?>?0.05). Conclusions: Our findings indicate that fatigue levels of mothers with CP children are higher than those with healthy children and associated with depression and deterioration in QoL in terms of physical, social and emotional functioning. This should be considered while designing a family centred rehabilitation programme for children with CP.

• Implications for Rehabilitation

• Caring for a child with cerebral palsy has psychological, social and financial impacts on familiesand is associated with increased levels of fatigue among mothers.

• The capacity of current programs and services needs to be strengthened to accommodate theneeds of children with CP and their mothers in order to reduce fatigue of mothers.

• New programs need to be developed to provide psychosocial support for the mothers andto reduce their fatigue as they continue to care for their children.

• Provision of assistive technology devices (particularly suitable wheelchairs) will be useful inreduction of fatigue levels of mothers.

     

Service use and family-centred care in young people with severe cerebral palsy: a population-based,cross-sectional clinical survey

Abstract

Purpose: To assess healthcare use and family perception of family-centred care in children and young adults with severe cerebral palsy (CP) within a geographical region of the UK. Method: Young people (4–27years) with severe forms of CP; Gross Motor Function Classification System levels IV and V, were recruited via an established case register. Data were collected in the participant’s home using a standardised background proforma and validated questionnaires. The Measure of Processes of Care was used to assess the family’s perception of family-centred care. Results: One-hundred and twenty-three children, young people and their families/guardians participated. Results showed high accessing of specialist services in childhood with a considerable decrease in young adults. Use of generalist services remained relatively constant. The reported use of formal respite services and support groups/youth clubs was relatively poor. Family-centred care was poor in the area of “providing general information” (2.8?±?1.73) but more moderate in the areas of “providing specific information about the young person” (4.2?±?1.94), “enabling and partnership” (4.2?±?1.9), “co-ordinated and comprehensive care” (4.3?±?1.95) and “respectful and supportive care” (4.7?±?1.75). Conclusions: The accessing of specialist services and respite care notably decreases amongst adolescents with severe forms of CP and the perception of family-centred care amongst families was fair at best. In particular, the results highlight the need for families to be provided with more general information and advice.

• Implications for Rehabilitation

• In a quest to enhance the rehabilitation process in young people with severe forms of cerebral palsy:

• Commissioners and service providers need to a adopt a more rationalised, needs led approach to service provision across the lifespan of people with severe forms of cerebral palsy, to include an effective and efficient transitional period.

• Habilitation specialists working with young adults need to continue to recognise the importance of family-centred care in managing this complex and chronic condition.

• Professionals working within the healthcare system must provide better communication and improve their dissemination of information to the families of children and young people with complex needs.

     

Children’s perceptions of their cerebral palsy and their impact on life satisfaction

Purpose: To assess an individual child’s cognitive and emotional perceptions of their cerebral palsy (CP) and how these are associated with their reported life satisfaction and their functional walking ability.Method: Convenience sample of 48 children with cerebral palsy, GMFCS (Gross Motor Function Classification System) I-IV, mean age of 12.2 ± 2.5 years was recruited from tertiary level out-patient clinics. All children completed the Brief Illness Perception Questionnaire-Cerebral Palsy version (BIPQ–CP), Students’ Life Satisfaction Scale (SLSS) and 1- and 6-min walk tests.Results: Children with CP reported levels of global life satisfaction (mean score 31.4/42) equivalent to previous studies of typically developing children. Higher total SLSS scores were associated with lower concern about CP (rho = ?0.61, p < 0.001), lower emotional impact (rho = ?0.58, p < 0.001), fewer perceived consequences (rho = ?0.53, p < 0.001) and perceptions of higher levels of personal control (rho = 0.40, p = 0.01). Multiple regression models using BIPQ-CP constructs found that a combination of lower level of concern and fewer perceived consequences predicted 46% of the variance in SLSS score (p < 0.001). GMFCS levels, walk distance and age were not significant predictors of life satisfaction. Conclusions: Life satisfaction in this group of children was strongly associated with a child’s perceptions of their CP but was not associated with functional walking ability. Although the cross-sectional nature of the study precludes assumptions of causality, understanding children’s cognitive and emotional beliefs about their cerebral palsy would seem to be an important adjunct to clinical management.

Implications for Rehabilitation

• Children with cerebral palsy as young as eight years can self-report cognitive and emotional beliefs about their condition.

• The reported degree of concern about cerebral palsy is the strongest predictor of the child’s reported level of life satisfaction.

• Those children with cerebral palsy who do report high levels of concern about their condition also report that they have feelings of reduced personal control and are more affected emotionally, suggesting possible targets for intervention.

     

Sociometric status and the attribution of intentions in a sample of adolescents with cerebral palsy

Purpose To examine how cerebral palsy (CP) and sociometric status at age 10 explain the development of a cognitive bias across two groups of adolescents aged 15.

Method Children with CP (N?=?60) and without CP (N?=?57) are part of a follow-up study. Three categories of sociometric status (popular, average, rejected) were obtained by conducting a class-wide interview in the class of the target children at age 10. At 15 years old, the same children (CP and non-CP) were asked to complete the Home Interview With Child questionnaire measuring a cognitive bias (hostile attribution of intentions (AI)).

Results Children with CP, especially girls, were significantly more rejected and less popular than controls at age 10. At age 15, among all participants, sociometric rejected and popular children tended to have a higher percentage of hostile AI than sociometric average children.

Conclusions There were no significant results for the combined effect of CP and sociometric status on the development of hostile AI at age 15. However, knowing the risk incurred by children with CP of being socially rejected, attention should be paid in the rehabilitation process to opportunities for social participation to facilitate the development of social competence.

• Implications for Rehabilitation

• Level I or II cerebral palsy (CP) is a condition that affects not only motor abilities but also social competence in children.

• Sociometric status in a group tends to affect the development of the ability to interprete intentions of others during adolescence.

• Sociometric measures in the class of children with CP could be a useful tool in the rehabilitation process in order to better define social participation opportunities.

• To improve social participation attempts, rehabilitation interventions should target social initiating skills, flexibility in interpreting peers’ behaviours, and ability to react effectively to negative peer treatment.

     

International classification of functioning,disability and health in children with cerebral palsy

Purpose: We intended to describe how concepts from recent models of disability have been studied for evaluation of children with cerebral palsy (CP) and their clinical implications. Method: We revised studies that focused on the components of the International Classification of Functioning, Disability and Health (ICF) in children with CP. Results: Researchers have reported that children with CP exhibit impairments in various body functions/structures, limitations in functional activities performance and experience poorer participation outcomes than their typical peers. Moreover, it has been showed that participation of children with CP was affected by environmental factors. Conclusion: Therefore, evaluation and rehabilitation processes should be focused on the quality of life improvement by emphasizing what a child can and wants to execute within the environment. Also, environmental factors should be recognized so that barriers could be minimized and adaptations to the environment achieved. However, few studies have verified the interrelationship between contextual factors and the functioning and disability domains in children with CP. This would allow us to know about approaches specifically designed for these children’s needs.

Implications for Rehabilitation

• Cerebral palsy is a disabling disease which impacts in body structures and functions, functional activities performance and social participation.

• ICF is a model of disability that focuses on the integration of these three dimensions.

• The knowledge about the concepts of ICF applied in children with CP allows an evidence-based practice.

     

Quality of life of Finnish children with cerebral palsy

Purpose: The aim of this study was to examine the quality of life (QOL) of Finnish children with cerebral palsy (CP) in different parts of Finland from the children’s and caregivers’ perspectives. The acceptability of the Finnish version of the CP QOL-Child questionnaire for clinical use is also evaluated. Method: This study was conducted in 2010–2013 as a part of the national CP-project. It is based on validated CP QOL-Child questionnaires. Children between 9 and 12 years were asked to fill in the child-self-report version. Caregivers who had a 4- to 12-year-old child with CP filled in parent-proxy reports. Results: Responses were obtained from 63 children and 161 caregivers. The response rates were 63 and 60%, respectively. Overall QOL was reported to be fairly good with no significant regional differences within Finland. Children reported significantly higher QOL in all QOL-domains except “social wellbeing and acceptance” than their caregivers did. The results showed acceptable levels of internal consistency of the Finnish version of the CP QOL-Child. Conclusions: QOL of children with CP is quite good in Finland. However, barriers to participation and the impact of disability and pain impair QOL. The Finnish version of the CP QOL-Child questionnaire is an appropriate clinical tool to assess QOL.

• Implications for Rehabilitation

• The used questionnaire provides an effective tool to identify areas for targeting support actions and to set goals for rehabilitation plans.

• The study brings forward the voices of children.

• It was found that pain has a great role in QOL, which should be taken into account when making rehabilitation plans.

• The participation of children with CP should be strengthened in every possible ways.

     

An overview of systematic reviews of adaptive seating interventions for children with cerebral palsy: where do we go from here?

Purpose: This article provides an overview and assessment of systematic reviews of adaptive seating outcomes in children with cerebral palsy (CP) and proposes strategies to advance and improve the clinical utility of future research evidence. Methods: A comprehensive search for systematic reviews was performed to locate and evaluate the functional effects of adaptive seating in children with CP. Relevant electronic databases were searched to identify reviews published between January 1990 and December 2010. Results: The search yielded five reviews of adaptive seating interventions that found generally positive, but inconclusive evidence of effectiveness for postural control and management, seated posture, upper extremity function, and overall clinical outcomes. Review authors consistently reported that they were unable to combine data from original research studies to make sound clinical recommendations due to the low quality of studies, the lack of appropriate outcome indicators, and the heterogeneity and lack of clarity in population characteristics and adaptive seating interventions. Conclusions: Strategies to improve the quality and clinical relevance of new research evidence for adaptive seating interventions include the adoption of an expanded view of child functioning, a child motor function classification and development approach, and contemporary frameworks for the measurement and evaluation of assistive technology outcomes.

Implications for Rehabilitation

• Assistive technology practitioners recommend adaptive seating devices to improve child functioning.

• Past systematic reviews of adaptive seating outcomes in children with cerebral palsy provide limited empirical support.

• Current thinking about child health and assistive technology outcomes provides direction to inform research and clinical practice.

     

Motion interactive video games in home training for children with cerebral palsy: parents’ perceptions

Purpose: To explore parents’ perceptions of using low-cost motion interactive video games as home training for their children with mild/moderate cerebral palsy. Method: Semi-structured interviews were carried out with parents from 15 families after participation in an intervention where motion interactive games were used daily in home training for their child. A qualitative content analysis approach was applied. Results: The parents’ perception of the training was very positive. They expressed the view that motion interactive video games may promote positive experiences of physical training in rehabilitation, where the social aspects of gaming were especially valued. Further, the parents experienced less need to take on coaching while gaming stimulated independent training. However, there was a desire for more controlled and individualized games to better challenge the specific rehabilitative need of each child. Conclusions: Low-cost motion interactive games may provide increased motivation and social interaction to home training and promote independent training with reduced coaching efforts for the parents. In future designs of interactive games for rehabilitation purposes, it is important to preserve the motivational and social features of games while optimizing the individualized physical exercise.

Implications for Rehabilitation

• Children with neurodevelopmental disorders like cerebral palsy (CP) are in need of fun and engaging rehabilitation methods to enhance motivation and increase compliance with motor training.

• There is a rising interest among clinical professionals and parents to use motion interactive games as a rehabilitation device for these children.

• In this qualitative study parents perceived that motion interactive games can enhance motivation for practice, stimulate the child, and reduce the parental efforts related to home-based rehabilitation of children with CP.

     

The Cerebral Palsy Kinematic Assessment Tool (CPKAT): feasibility testing of a new portable tool for the objective evaluation of upper limb kinematics in children with cerebral palsy in the non-laboratory setting

Purpose: Efficacy of treatment to improve upper-limb activity of children with cerebral palsy (CP) is typically evaluated outside clinical/laboratory environments through functional outcome measures (e.g. ABILHAND kids). This study evaluates CPKAT, a new portable laptop-based tool designed to objectively measure upper-limb kinematics in children with CP. Methods: Seven children with unilateral CP (2 females; mean age 10 years 2 months (SD 2 years 3 months), median age 9 years 6 months, range 6 years 5 months, MACS II–IV) were evaluated on copying, tracking and tracing tasks at their homes using CPKAT. CPKAT recorded parameters relating to spatiotemporal hand movement: path length, movement time, smoothness, path accuracy and root mean square error. The Wilcoxon signed ranks test explored whether CPKAT could detect differences between the affected and less-affected limb. Results: CPKAT detected intra-limb differences for movement time and smoothness (aiming), and path length (tracing). No intra-limb tracking differences were found, as hypothesised. These findings are consistent with other studies showing that movements of the impaired upper limb in unilateral CP are slower and less smooth. Conclusion: CPKAT provides a potential solution for home-based assessment of upper limb kinematics in children with CP to supplement other measures and assess functional intervention outcomes. Further validation is required.

• Implications for Rehabilitation

• This paper demonstrates the feasibility of evaluating upper limb kinematics in home using CPKAT, a portable laptop-based evaluation tool.

• We found that CPKAT is easy to set-up and use in home environments and yields useful kinematic measures of upper limb function.

• CPKAT can complement less responsive patient reported or subjectively evaluated functional measures for a more complete evaluation of children with cerebral palsy.

• Thus, CPKAT can help guide a multi-disciplinary team to more effective intervention and rehabilitation for children with cerebral palsy.

     

“I refer to them as my colleagues”: the experience of mutual recognition of self,identity and empowerment in multiple sclerosis

Abstract

Purpose: To explore how persons with multiple sclerosis (MS) experience participating in inpatient rehabilitation, and how it might provide psychosocial benefits. Method: Ten participants with MS who had completed inpatient rehabilitation in Norway and on Tenerife participated in two focus groups. A semi-structured interview protocol was used. Data were analyzed using qualitative content analysis informed by a phenomenological perspective. Results: During inpatient rehabilitation participants shared experiences with symptoms of the disease, of social stigma and coping strategies. They communicated experiences of living with MS and they created a sense of community, they became “colleagues”. This experience gave rise to mutual recognition of ability, impairment, self and identity, and thus facilitated personal empowerment to counteract social stigma through adequate coping strategies. Conclusion: Participating in inpatient rehabilitation gave people with MS the possibility to exchange information and communicate strategies for coping with the disease-related conditions and societal demands. They established social relations recognizing each other’s resources. Participants felt equipped to make decisions and to mobilize individual and collective resources. Recognition of the individual with both ability and impairment can be a key to empowerment.

• Implications for Rehabilitation

• In multiple sclerosis (MS), the clinical symptoms and the unpredictability of the disease may have consequences for how patients relate to self and to others, and hence how they perform socially.

• Stigmatization is commonly experienced among people with MS.

• The recognition experienced from peers create a sense of community.

• We recommend health care professionals to acknowledge the importance of peer support for self, identity and empowerment in MS.

     

The course of health-related quality of life of preschool children with cerebral palsy

Purpose: The purpose of this paper is to describe the course of the health-related quality of life (HR-QoL) of children with cerebral palsy (CP) between the ages of 2.5 and 4.5 years, at both group and individual level. We also examined whether CP characteristics are helpful in understanding which children show a decrease in HR-QoL. Methods: HR-QoL of 72 children with CP was measured using the TNO-AZL Preschool children Quality of Life (TAPQOL) questionnaire at the ages of 2.5, 3.5 and 4.5 years. The course of HR-QoL was compared between groups with different CP characteristics. Results: Median scores for 10 of the 12 domains of the TAPQOL were found to be stable between ages 2.5 and 4.5 years. However, individual children showed great changes in HR-QoL at these ages, for all domains. A larger proportion of children with less severe CP showed a decrease in HR-QoL for the behaviour problems domain (p = 0.02), and a larger proportion of unilaterally affected children showed a decrease in HR-QoL regarding the anxiety (p < 0.001) and social functioning (p = 0.01) domains. Conclusions: Although the median HR-QoL of children with CP is generally stable at these ages, much variation in the course of HR-QoL exists between individual children. There is no clear association between motor functioning or limb distribution and a decrease in HR-QoL.

Implications for Rehabilitation

• Although preschool children with cerebral palsy (CP) generally have a fairly good health-related quality of life, large individual differences in the course of health-related quality of life exist.

• The type of CP or the level of motor disabilities is not related to the course of health-related quality of life.

• Because of its subjective nature, for young children with CP health-related quality of life is to be determined by asking their parents, not by doctor’s estimation depending on disease-specific factors.

     

School success and participation for students with cerebral palsy: a qualitative study exploring multiple perspectives

Purpose: This qualitative study investigated perceived successful school experiences for students with cerebral palsy in Australia. Participation and appropriate support in school are complex concepts, although few studies have investigated all stakeholders’ perspectives.

Methods: Phenomenology informed the study that centered on the concept of a successful school experience. In-depth interviews occurred with students (n?=?7), parents (n?=?11), teachers (n?=?10), school principals (n?=?9) and allied health practitioners (n?=?10) to gain the perspective from multiple vantage points. Specific research questions, interview guides and demographic questionnaires were configured for each group. Interviews were analyzed thematically within and between groups.

Results: Three key themes emerged: Collaborative partnerships between families, schools and outside organizations; School culture and attitude is key; and, allied health practitioners are part of home and school teams.

Conclusions: Student and school success was impacted substantially by the capacity of adults in the student’s life to collaborate – family, school professionals and allied health practitioners. An inclusive school culture was crucial to students with cerebral palsy. All parties needed to prioritize promotion of an open and positive school culture built around problem-solving inclusive practices. Involved people, such as allied health practitioners, bring knowledge and skills that are not otherwise readily available in school environments.

• Implications for rehabilitation

• Students with cerebral palsy have high needs at school and allied health practitioners have a role advocating for, educating and providing support to students within the school.

• Teachers of students with cerebral palsy need education, training and support from allied health practitioners.

• The need for allied health and rehabilitation services continues for children and youth with cerebral palsy outside of school and across the schooling years.

• School professionals; allied health practitioners; families and students can work together to improve the student experience

     

MAPx (Mobility Aid Personalization): examining why older adults “pimp their ride” and the impact of doing so

We all do this. We personalize things. We buy leopard-printed seat covers and fuzzy dice for our cars, and display action figures and photographs in our offices. Studying older adults who have extended this process of personalization to their mobility devices, the purpose of the mobility aid personalization (MAPx) project is to examine MAPx and its impact on the health and mobility of older adults. Using a qualitative research design, field observations and interviews were conducted with 72 older adults to gain an in-depth understanding of device customization from an emic (insider’s) perspective. Findings illustrate that older adults personalize their devices for reasons of fun, function and fashion. MAPx – the process of purposefully selecting or modifying a mobility device to suit individual needs and preferences – was also found to promote health and mobility by encouraging device acceptance, increasing social participation, enhancing joy and preserving identity. MAPx makes an important contribution to our understanding of the complex relationship between older adults and assistive devices and provides a new approach to some old problems including falls, inactivity and social isolation. Encouraging MAPx is a promising rehabilitation strategy for promoting health and community mobility among the older adult population.

• Implications for Rehabilitation

• Personalizing an assistive device facilitates device acceptance, promotes health and well-beingand should be supported and encouraged in rehabilitative care.

• Choice, variety and access are critical aspects of assistive devices; vendors, manufacturers andpractitioners should work together to provide clients with a greater range of affordable optionsfor new devices.

• Function is more than mechanical or physical; social factors including social identity, stigma andsocial roles must be adequately considered and explicit in rehabilitative practice.