Managing the move from assisted to independent living: an inclusive qualitative study among adults with cerebral palsy.

PURPOSE: To understand aspects important to adults with severe cerebral palsy (CP) as they prepare to move from assisted to independent living and to create an appropriate intervention. MATERIALS AND METHODS: An inclusive qualitative study was conducted together with adults with severe CP (Gross Motor Function Classification Scale 4-5) preparing to move to independent living. It included semi-structured interviews which were recorded, transcribed, and analyzed by two occupational therapists to create themes. The themes were reviewed and adjusted by the partners in a group context. RESULTS: Seven partners aged 23-47 years (median= 35 years, standard deviation = 10; 4 female) participated. Four themes arose with sub-themes: (1) house management (finances, meals, maintenance, and housework), (2) interactions and boundaries (with a caregiver, family, friends, and romantic partners), (3) schedules (work, leisure, volunteering, education, and health management), and (4) "my way" (autonomy, independence, and self-advocacy; emotions and group power). These themes expressed the concerns of the partners and formed the basis of a group intervention before their move from assisted to independent living. CONCLUSIONS: The inclusive research revealed themes the partners raised that expressed their concerns; these became the basis for a group intervention to prepare for their move from assisted to independent living.

People with severe cerebral palsy raise many concerns regarding living independently.The theme most often discussed illuminated the desire for control over the process.Inclusive research allows participants to co-create a tailor-built intervention.

Lessons learned from a pediatric powered mobility lending program.

PURPOSE: To evaluate children's characteristics and impact of a powered wheelchair lending program including comparisons of diagnostic sub-groups, and validation of a predictive model of powered mobility proficiency. METHODS AND MATERIALS: This retrospective study included 172 children who participated in the ALYN powered mobility lending program from 3/2009-7/2022. Demographics and functional levels were measured via questionnaires; driving proficiency was evaluated when the wheelchair was returned, and parents and children were interviewed following their participation in the program. RESULTS: Two diagnostic groups were identified: cerebral palsy (CP) (n = 136, median = 9.75 yrs) and other neuromuscular diseases (NMD) (n = 30, median = 5.83 yrs). They differed significantly in the age they commenced PM training, the male/female ratio, walking ability and access mode. Fifty-seven percent of the participants with CP achieved powered mobility proficiency, a rate that was significantly lower than the 73% proficiency found for the NMD group. Four significant predictors were identified: communication, manual wheelchair operation, access mode and go-stop upon request. They predicted proficiency in approximately 80% of cases. Overall feedback from the parents and children indicated that their personal and family's quality of life improved as a result of their child's ability to use a powered wheelchair. CONCLUSIONS: A lending program provides children with opportunities to improve mobility skills in an appropriate powered wheelchair. Children who can communicate verbally, propel a manual wheelchair, use a joystick and go-stop upon request are significantly more likely to become proficient drivers; however, many who were unable to complete these tasks also improved and even became proficient drivers.

Children who are able to engage in verbal communication, propel a manual wheelchair for short distances, use a joystick and go-stop upon request are significantly likely to become a proficient powered wheelchair drivers.Children with cerebral palsy who have greater physical challenges (e.g., cannot walk at all or propel a manual wheelchair) can reach powered mobility proficiency following practice with a powered wheelchair borrowed from a lending program, although at a lower rate than those with other neuromuscular diseases; additional training strategies should be developed to increase the percent success for children with cerebral palsy.A multivariate logistic regression was able to correctly predict whether a child will become proficient driver in 80% of case.Training with a powered wheelchair from the lending program enabled parents to observe their children's independent mobility in their home environment; they reported improvement in the family's quality of life.

Effects of a powered mobility summer camp as perceived by school staff: a qualitative study.

PURPOSE: Powered mobility has a positive effect on social skills, self-esteem and overall development of children with motor impairments, but almost all previous studies were conducted with pre-school children. The aim of this study was to explore change beyond mobility following a therapeutic powered mobility summer camp for school-aged children and adolescents with severe cerebral palsy, as perceived by school staff. MATERIALS AND METHODS: The participants in the therapeutic camp, which ran for 3 weeks, 5 days a week, three times over the summers 2018-2019, were children ages 7-19 (median age 11) with severe cerebral palsy who needed assistance in mobility and had limited hand function. Following the intervention, 19 semi-structured audio-recorded interviews were conducted with school staff, then transcribed and thematically analyzed using an inductive qualitative descriptive design with a phenomenological theoretical framework. RESULTS: Four overarching themes were identified: (1) "Every step you take: mastering new, sometimes unexpected, skills", (2) "Break on through to the other side: changes in behaviour", (3) "Make new friends (but keep the old): Boosting social behaviour" and (4) "I'm a believer: The journey through self-efficacy to empowerment". CONCLUSIONS: The interviews showed the immediate positive influence of powered mobility for children who previously did not have independent mobility, following an intensive intervention. Changes in initiative, empowerment, social relationships and behaviour highlight the importance of self-generated mobility, regardless of whether independence was achieved. School-aged children with severe cerebral palsy seem to benefit from an intensive powered mobility intervention in areas other than mobility skills themselves.IMPLICATIONS FOR REHABILITATIONPowered mobility intervention seems to encourage activity and initiation among children and youth with severe CP.This research adds to the understanding of the effect powered mobility can have on social interaction and communication.Powered mobility might be a means to allow development, in addition to being an important end.

Development of a new tool: progression of paediatric powered mobility- 3PM.

PURPOSE: To develop a tool to assess the progression of powered mobility skills for children and determine its psychometric properties. METHOD: A three-phase, the mixed-method design included: I) conceptualisation based on international specialists' input through a focus group or interview to generate initial items; II) tool development using a two-round Delphi survey and III) evaluation of psychometric properties from eight video recordings of children. The Progression of Paediatric Powered Mobility (3PM) was validated via Intraclass correlation coefficients (ICC) calculated from conventionally powered mobility assessments: the Powered Mobility Program, the Assessment of Learning Powered Mobility tool, and the Powered Mobility Proficiency test. RESULTS: Content derived from 20 clinical experts led to the development of the first version consisting of 19 demographic and 61 driving skill items. Following two Delphi rounds, the final tool included 14 demographic and 41 driving skill items. Internal consistency was excellent (Cronbach alpha = 0.96) as was the inter-rater reliability (ICC = 0.96, 95% confidence interval = 0.95-0.96). Pearson correlation coefficients between the 3PM and other PM assessments demonstrated good convergent validity. CONCLUSION: The 3PM, created through international collaboration with experts in PM, has excellent psychometric values as a valid measure that can be used reliably to assess children's powered mobility skills.Implications for rehabilitationThe 3PM reflects the three stages of powered mobility development: exploratory, operational, and functional stages.Input from clinical experts in PM mobility contributed to the identification of the key driving skills important to include in the 3PM.A reliable and valid tool can facilitate assessment and tailored intervention in paediatric powered mobility.

Evaluating a Therapeutic Powered Mobility Camp for Children with Severe Cerebral Palsy.

Background. Children and youth with severe cerebral palsy (CP) have limited independent mobility, which affects opportunities for overall development. Purpose. To examine the effectiveness of Power Fun, a therapeutic powered mobility summer camp. Methods. A quasi-experimental, repeated-measure design was used, with participants acting as their own control. Twenty-four participants with severe CP (aged 7-20 years) attended Power Fun for three weeks, five days/week. Assessments of powered mobility skills and functional mobility goals were conducted three weeks before the camp (T1), at baseline (T2), postintervention (T3), and at three-week follow-up (T4). Findings. An analysis of variance results indicated significant improvements in powered mobility skills (F(1,22) = 56.61, p < 0.001, η2p = 0.74) and functional mobility goals (F(1,58) = 80.17, p < 0.001, η2p = 0.74), with 70% of goals achieved postintervention. A descriptive analysis revealed three learning profiles. Implications. This study provides initial evidence supporting the effectiveness of Power Fun as an intervention promoting powered mobility for children with severe CP, across a range of abilities.

Feasibility Study of a Therapeutic Mobility Summer Camp for Children with Severe Cerebral Palsy: Power Fun.

Aim: Powered mobility has positive effects on development of children with limited independent locomotion, but many are deprived of this opportunity due to their limitations. This study aimed to evaluate the feasibility of Power Fun, a therapeutic summer camp, for students with severe cerebral palsy (CP).Methods: Five students with CP, ages 11-15, received personally adapted powered wheelchairs and participated daily in the camp. The camp ran five days a week during three weeks and included two mobility sessions daily. Assessments were conducted three weeks prior to the camp (T1), at baseline (T2), post-intervention (T3) and six weeks follow-up (T4). Measures used were Power Mobility Program (PMP), Assessment of Learning Power mobility use (ALP), Wheelchair Outcome Measure for Young People (WhOM-YP), Goal Attainment Scaling (GAS) and Dimensions of Mastery Questionnaire (DMQ).Results: All participants finished the camp. Outcome measures showed no change between T1-T2 but improved significantly (p<.05) after the intervention (T2-T3), and gains were maintained at T4 (Wilcoxon signed-rank test). Goals improved to slightly above the expected outcome (GAS average 0.11).Conclusions: Power Fun shows good feasibility and significant improvement in mobility skills and goals of children with severe CP. Further studies are warranted.

Effectiveness of a cognitive-functional group intervention among preschoolers with attention deficit hyperactivity disorder: a pilot study.

OBJECTIVE: To test functional improvement after a group cognitive-functional occupational therapy intervention for preschoolers with attention deficit hyperactivity disorder (ADHD). METHOD: Seventeen preschooler-parent dyads attended 11 weekly group sessions focused on acquiring executive strategies through occupational performance. Functional improvement was measured using the Canadian Occupational Performance Measure (COPM) and Goal Attainment Scaling (GAS); executive function, using the Behavior Rating Inventory of Executive Function-Pediatric; ADHD symptomatology, using Conners' Parent Rating Scale-Revised and Conners' Teacher Rating Scale-Revised; and social functioning, using the Social Participation scale of the Sensory Processing Measure. RESULTS: Significant improvement was found on the COPM and GAS measures, whereas mixed results were found on the other measures, with improvements found in children whose scores indicated impairment at baseline. CONCLUSIONS: Cognitive-functional group intervention appears to significantly improve daily functioning, executive function, and social functioning for children who demonstrate clinical impairment. Further research with a larger sample, a control group, and follow-up is required.