Development of a condition-specific measure of quality of life for children with cerebral palsy: empirical thematic data reported by parents and children

Background: 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. Methods: 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). Results: 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. Conclusions: 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.

Efficacy of neuromuscular electrical stimulation in improving ankle kinetics during walking in children with cerebral palsy

Neuromuscular electrical stimulation (NMES) applied to the triceps surae muscle is claimed to be effective in improving gait in children with cerebral palsy. The main aim of this study was to determine the effect of NMES on the triceps surae muscle in improving the gait and function of children with cerebral palsy. Twelve children with spastic diplegia or hemiplegia were recruited and randomly assigned to the two experimental groups. The period of the study was 8 weeks (2-4-2 week design). The initial 2 weeks was the control period, in which usual treatment was given to both groups of patients with a pre- and post-treatment assessment. The middle 4 weeks was the experimental period, in which the Treadmill+NMES group received NMES plus treadmill walking training and the Treadmill group underwent treadmill walking training only. Assessment was performed at 2-week intervals. The final 2 weeks was the carryover period, in which treatment to be tested was stopped and reassessment performed again at the end of week 8. An additional treatment and post-treatment assessment were given at weeks 2, 4 and 6 to test for the immediate effect of treatment. Altogether, eight repeated measures with three-dimensional gait analysis and five clinical measurements using the gross motor function measure (GMFM) were performed. Kinetic changes in ankle moment quotient (AMQ) and ankle power quotient (APQ) were not significant either immediately or cumulatively in both groups. Improvement in trend was observed in both groups immediately but not cumulatively. Using the GMFM, functional changes were detected in standing (GMST, p < 0.001) and in walking (GMWK, p = 0.003) using a 'time' comparison. Significant interaction was also detected in GMWK using 'treatment by time' (p = 0.035). The difference between the two groups was not significant on 'treatment' comparison of both GMST and GMWK. Both groups showed improvement in GMST and GMWK cumulatively but there was no difference between the two groups. The effects in both groups could be carried over to 2 weeks after interventions stopped. Both the Treadmill+NMES and Treadmill groups showed improvement in functional outcomes. The trend in the changes of the GMFM score suggested that improvements were greater in the Treadmill+NMES group. There was also a trend showing some immediate improvement in AMQ and APQ.

To do or not to do (exercise) : physical activity in the lives of people with cerebral palsy

We examined the lives of adults with cerebral palsy who had minimal involvement in physical activity (Judy, aged 60; Alana, aged 29), who were involved in physical activity (Amy, aged 25; Ben, aged, 30), or who had minimal involvement in physical activity and who then participated in physical activity (David, aged 27; Tim, aged, 24). After receiving ethical approval, a life-history research approach (Denzin, 1989: Interpretive biography. Newbury Park, CA: Sage) was used, with the participants’ stories being interpreted using primarily psychodynamic theory (Freud, Erikson, Adler, Basch) to gain insight into their meaning and experiences of physical activity.

Judy and Alana had similar childhood experiences, which included: performing difficult, and sometimes painful, physiotherapy; wearing callipers to assist their walking; lacking competence at physical activity; and being socially isolated from their classmates. These aspects of their life histories seemed to contribute to their subsequent avoidance of physical activity and early onset of functional decline.

Amy and Ben had negative experiences with physical activity as children (similar to Judy and Alana), but were involved in, and valued, physical activity as adults. Physical activity was a means of displaying competence, delaying further functional loss, and becoming socially connected.

David and Tim lost the ability to walk in early adolescence. The minimal physical activity in which they engaged during their adult lives was directed towards trying to walk again. Walking seemed to be intimately connected with psychosocial growth. David’s weight-training programme seemed to provide him with another avenue for self-improvement towards his goal of attracting a life partner. Tim’s warm-water aerobic programme provided him with an opportunity to develop competence at swimming and at walking, and to enhance his self-esteem for these activities.

Involvement in physical activity may be important for people with cerebral palsy in their endeavours to successfully face the various psychosocial challenges throughout life. Implications of this research include: parents and teachers of children with cerebral palsy should provide support for their involvement in physical activity; physiotherapists should try to reduce the pain and increase the perceived relevancy of the treatments they deliver to young people with cerebral palsy; and psychologists should be aware of some of the difficulties people with cerebral palsy face and how they may manifest in adults with the condition.

Adults with cerebral palsy benefit from participating in a strength training programme at a community gymnasium

Purpose : This study examined whether a community-based progressive resistance strength training programme could improve muscle strength and functional activity in a group of adults with cerebral palsy with high support needs.

Method : Using a single group pre-post clinical design, 10 adults (7 males, 3 females; mean age 47.8 SD 5.7 years) with cerebral palsy and high support needs completed 4 weeks of introduction and familiarization, followed by a 10-week progressive resistance strength training programme in a community gymnasium. Participants were measured for muscle strength, locomotion speed and timed sit-to-stand.

Results : After establishment of a stable baseline from weeks 2 to 5 with no systematic change and a high degree of association ( r  > 0.86), participants increased leg strength by 22.0% ( p  = 0.02), arm strength by 17.2% ( p  = 0.01) and improved performance of sit-to-stand ( p  = 0.02) during the 10-week strength training intervention.

Conclusions : This study adds to the accumulating evidence that strength training can be beneficial for people with cerebral palsy by demonstrating benefits for adults with cerebral palsy and high support needs who are subject to decline in physical function associated with the ageing process.

Strength training can be enjoyable and beneficial for adults with cerebral palsy

Purpose: To explore the positive and negative perceptions of participating in a strength- training programme for adults with cerebral palsy.

Method: Ten adults aged over 40 years with cerebral palsy participated in a group-based 10-week progressive resistance strength-training programme in a community gymnasium. After the programme, each participant was interviewed using an in-depth semi-structured format and the results coded thematically.

Results: Participants perceived that their strength, and ability to perform everyday activities had improved. However, the main benefit for participants was enjoyment and social interaction. The only negative perceptions related to fatigue, short-term muscle soreness and a feeling that they had not improved as much as they had expected.

Conclusions: Enjoyment, a factor that can promote adherence and sustainability, was a key benefit of this strength-training programme for adults with cerebral palsy that led to perceptions of increased strength and physical functioning. These findings suggest that exercise programmes for adults with cerebral palsy should be conducted in a group in the community, thereby promoting community inclusion. In addition, it is important to provide education to participants about the normal responses and expectations of an exercise programme.

The impact of caring for a child with cerebral palsy : quality of life for mothers and fathers

Background:  Although it is expected that caring for a child with cerebral palsy (CP) can impact on the quality of life (QOL) of caregivers, the QOL of carers' has yet to be adequately examined. The aims of this study are to: (1) explore the QOL of mothers and fathers of children with CP aged 3–18 years; and (2) examine whether the impact of caring for a child with CP changes from childhood to adolescence.

Method: A qualitative study was conducted utilizing a grounded theory framework. Twenty-four mothers and 13 fathers of children and adolescents with CP aged 3–7 years (n = 15), 8–12 years (n = 10) and 13–18 years (n = 12) and with varying levels of impairment (GMFCS Level I = 1, II = 4, II = 3, IV = 5, V = 12) participated in semi-structured interviews about their QOL. The transcripts were analysed to identify issues affecting parental QOL.

Results: There were no differences in parental QOL among subgroups (i.e. 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.

Conclusions: Caring for a child with CP can both positively and negatively impact on a parent's life. There is value for both parents and children if parental concerns and determinants of QOL are considered in overall programme planning and service delivery for children and their families.

Pretend play of children with cerebral palsy

Background and Purpose: Evaluate self-initiated pretend play of children with cerebral palsy.

Method: Twenty preschool children participated in the study. Pretend play ability was measured by using the child-initiated pretend play assessment culturally adapted to Brazil.

Results: There were significant negative correlations between the children’s motor severity level and their elaborateness of play with conventionalimaginative and symbolic play materials and a number of object substitutions in symbolic play. This indicated that children with greater motor limitations had diminished play ability. In this sample, 35% of the children showed typical play styles, identified by good scores in elaborate pretend play actions, number of object substitutions, and ability to self-initiate play, whereas 65% showed delay in their play.

Implications: The type of pretend play deficits that might be expected in children with cerebral palsy were described. Furthermore, suggested directions for therapeutic intervention to enhance pretend play performance in cerebral palsy children were proposed.

Oral baclofen in children with cerebral palsy : a double-blind cross-over pilot study

Aim: To assess the effectiveness of oral baclofen in reducing spasticity and improving function in children with cerebral palsy. Methods: A double-blind, randomised cross-over pilot study of oral baclofen versus placebo. Assessment tools included the Goal Attainment Scale, Pediatric Evaluation of Disability Inventory, Modified Tardieu Scale and parent questionnaire. Results: Fifteen children with mean age 7.4 years (SD = 2.7 years) and spastic or spastic/dystonic quadriplegia (Gross Motor Function Classification System Level IV or V) were enrolled. Children scored significantly better on the Goal Attainment Scale with baclofen compared with placebo (F(1,13) = 4.5, P = 0.05). There was no significant difference between baclofen and placebo for the Pediatric Evaluation of Disability Inventory or Modified Tardieu Scale. Parent questionnaire results are described. Conclusion: This pilot study demonstrates that oral baclofen has an effect beyond placebo in improving goal-oriented tasks, such as transfers, in children with spastic quadriplegic cerebral palsy.