F. Virginia Wright

The prosthetic upper extremity functional index: Development and reliability testing of a new functional status questionnaire for children who use upper extremity prostheses

The Prosthetic Upper Extremity Functional Index (PUFI) was developed by the authors clinical research group to evaluate the extent to which a child actually uses a prosthetic limb for daily activities, the comparative ease of task performance with and without the prosthesis, and its perceived usefulness. The PUFIs test-retest and interrater reliability were evaluated with 24 children. Intraclass coefficients (ICCs) were calculated for each of four subscales of the PUFI--specifically, method of performance, ease of prosthetic use, usefulness of the prosthesis, and ease of performance without the prosthesis. The ICCs were greater than 0.65, indicating good test-retest reliability for the older-child respondents (n = 10) and fair to good reliability (ICCs, 0.40 to 0.84) for the parent respondents overall (n= 21). Interrater (child-parent) reliability was lower, with ICCs from 0.30 to 0.77. This finding was not unexpected, since a child and parent may rate in the context of different functional environments. The prosthesis was used 53% of the time by older children and more than 75% of the time by younger children. The results provide evidence that the PUFI has good test-retest reliability overall as a measure of a childs ability to perform upper extremity activities with a prosthesis.

Addressing the challenges of collaborative goal setting with children and their families.

ABSTRACT Collaborative goal setting between clinicians and clients/families is considered a fundamental component of the pediatric rehabilitation process. However, truly client-centered goal setting is not without its challenges. The purpose of this paper is to highlight theoretical concepts relevant to rehabilitation goal setting, review clinical studies directly evaluating relationships between goal setting and pediatric rehabilitation outcomes, and provide recommendations to facilitate collaborative goal processes. Four theoretical frameworks were identified that may lie behind and help explain the effectiveness of collaborative goal setting. The four relevant outcome studies found in the review revealed that individualized goal setting is an important component of the intervention, engages families more actively in therapy, and is associated to some extent with positive outcomes. The evidence suggests that the impact of fully collaborative goal setting is sufficiently positive to support investment of organizational and individual time, energy, and resources to make it an integral part of the rehabilitation process.

A qualitative study of fitness instructors' experiences leading an exercise program for children with juvenile idiopathic arthritis.

ABSTRACT. Children with arthritis face challenges when they try to increase their physical activity. The studys objective was to identify elements of a successful community-based exercise program for children with arthritis by investigating the perspectives of fitness instructors who led the program. This qualitative study used a phenomenological approach. Four fitness instructors participated in individual interviews. Themes were developed through inductive analytic methods. Three main themes were identified: (a) children with arthritis require encouragement and guidance throughout the program from fitness instructors who understand their arthritis, and support from parents and peers; (b) children need help to overcome their negative perceptions about exercise; and (c) exercise program participation can launch the adoption of a more active lifestyle. Pediatric physiotherapists can encourage the establishment of successful exercise programs for children with arthritis in nonmedical or community environments through the formation of supportive, education-based partnerships with community-based fitness instructors.

What is it like to walk with the help of a robot? Children’s perspectives on robotic gait training technology

Abstract Purpose: Robotic gait training is an emerging intervention that holds great therapeutic promise in the rehabilitation of children with neuromotor disorders such as cerebral palsy (CP). Little is known about children and parents’ views on this new technology. The purpose of this qualitative study was to investigate the expectations and experiences of children with CP in relation to robotic gait training using the Lokomat®Pro. Method: An interpretivist qualitative design was employed in which perspectives of children and parents were elicited through separate semi-structured interviews to examine expectations of and experiences with the Lokomat. Results: Four themes related to children’s expectations and experiences using the Lokomat were identified: (1) Not sure what to expect, but okay, I will do it; (2) It’s more than just the Lokomat, it’s the people that make the difference; (3) Having mixed impressions about the Lokomat; and (4) It’s probably helping me, but I don’t really know. Conclusions: Rehabilitation professionals, researchers and parents are encouraged to reflect on why and how one might engage children in gait-related rehabilitation in ways that appeal to children’s desires and expectations. This may shape how interventions are presented to children and how goals and outcomes are framed. Implications for Rehabilitation Children in this study did not consistently feel excited about, have a wish to use, or have a sustained interest in the use of a robotic technology, and at times experienced some anxiety in relation to their participation in the intervention. Contrary to assumptions that disabled children value walking “normally”, children in this study did not express a desire to walk in typical (non-disabled) gait patterns, and equated so-called “normal” walking with their usual walking styles. Thus, we encourage clinicians, researchers and parents to reflect on why, when and how best to engage children in gait-related rehabilitation in ways that appeal to and align with children’s desires and expectations.

“You gotta try it all”: Parents’ Experiences with Robotic Gait Training for their Children with Cerebral Palsy

ABSTRACT Aims: Innovative robotic technologies hold strong promise for improving walking abilities of children with cerebral palsy (CP), but may create expectations for parents pursuing the “newest thing” in treatment. The aim of this qualitative study was to explore parents’ values about walking in relation to their experiences with robotic gait training for their children. Methods: Semi-structured interviews were conducted with parents of five ambulatory children with CP participating in a randomized trial investigating robotic gait training effectiveness. Results: Parents valued walking, especially “correct” walking, as a key component of their childrens present and future well-being. They continually sought the “next best thing” in therapy and viewed the robotic gait trainer as a potentially revolutionary technology despite mixed experiences. Conclusions: The results can help inform rehabilitation therapists’ knowledge of parents’ values and perspectives, and guide effective collaborations toward meeting the therapeutic needs of children with CP.

Evaluation of the longer-term use of the David Hart Walker Orthosis by children with cerebral palsy: a 3-year prospective evaluation

Purpose.u2003To evaluate a walking device, the David Hart Walker Orthosis (HW), that was designed to allow children with severe cerebral palsy to ambulate with hands-free support. Method.u2003A pre-/post-test prospective one-group study evaluated outcomes three years after receiving the HW. Physical therapy assessment, parent interview and satisfaction questionnaire provided details on outcomes. Results.u2003The HW remained the sole walking device for 13 of 20 children at 3 years. Six of seven children who discontinued use were over 12 years old and had outgrown its maximum size. Twelve of 13 children who still used the HW were assessed. GMFM Stand and Walk Dimension mean score increases of about 3% points for the 1 – 3-year follow-up were not significant (P > 0.16). Timed walk scores were unchanged. Steering ability gains were demonstrated on a directional mobility assessment (from 12.0 to 27.9% [P = 0.02]). Despite its eventual height limitations, parents considered HW use to be worthwhile (mean satisfaction = 8.2/10). Conclusions.u2003Sixty-five percent of the children continued to use the HW as their sole walking device, and demonstrated improved ability overall to manoeuvre it during functional ambulation. The primary reason for discontinuation was inability to accommodate taller children.

Development of Child and Family-Centered Engagement Guidelines for Clinical Administration of the Challenge to Measure Advanced Gross Motor Skills: A Qualitative Study

ABSTRACT Aims: This article describes a qualitative study aimed at producing child-centered guidelines for the administration of a measure of childrens advanced gross motor skills, the Challenge. The purpose of the guidelines is to promote collaborative interpretation and application of results. Methods: The study was conducted in three Canadian cities and included 31 children with cerebral palsy (GMFCS Level I or II) ages 8 to 18 and one parent/caregiver per child (N = 62 participants). Following Challenge administration, each child and one of their caregivers took part in separate qualitative interviews. Analyses were oriented to exploring understandings of the purposes of testing, impressions of the childs performance, and perceptions of how results might inform activity choices and interventions. Results: Three themes were generated: investments in doing well; I know my child/myself; and caregivers interpretations of childs performance. Themes were then integrated with principles of child and family-centered care to develop The Challenge Engagement Guidelines directed at reducing test anxiety and enhancing shared decision making. Conclusions: The Guidelines are the first of their kind to integrate child and family-centered principles into the administration protocol of a motor measure. Although developed for the Challenge, the principles have applicability to other rehabilitation measures.

Evaluation of the Reliability of the Challenge when used to Measure Advanced Motor Skills of Children with Cerebral Palsy

ABSTRACT Aims: The Challenge was designed as an extension to the GMFM-66 to assess advanced motor skills of children with cerebral palsy (CP) who walk/run independently. This study evaluated the Challenges inter-rater and test–retest reliability. Methods: Thirty children with CP (GMFCS level I [n = 24] and II [n = 6]) completed the Challenge, with re-testing one to two weeks later. Seven physiotherapist assessors passed the Challenge criterion test pre-administration. A single assessor administered and scored test and retest sessions (test–retest reliability). A second assessor independently scored one of these sessions (inter-rater reliability). Results: Inter-rater reliability was excellent (ICC = 0.97, 95%CI 0.94–0.99, CoV < 10%), with no bias (Bland-Altman plot). Test–retest ICC was excellent (ICC = 0.94, 95% CI 0.88–0.97. CoV < 10%, and Minimum Detectable Change (MDC90) was 4.47 points. Many participants indicated practising at home pre-retest session. Conclusions: There was strong rating consistency between assessors. While test–retest ICC estimates were also high, Challenge scores were higher at retest. The MDC90 was still in a range (>4.5 points) that seems clinically viable for change detection. Test–retest reliability could be reassessed with children instructed not to practice between assessments to determine the extent to which between-session practice influenced scores.

Long-term clinical evaluation of the automatic stance-phase lock-controlled prosthetic knee joint in young adults with unilateral above-knee amputation

Abstract Purpose: The purpose of this study was to clinically evaluate the automatic stance-phase lock (ASPL) knee mechanism against participants’ existing weight-activated braking (WAB) prosthetic knee joint. Method: This prospective crossover study involved 10 young adults with an above-knee amputation. Primary measurements consisted of tests of walking speeds and capacity. Heart rate was measured during the six-minute walk test and the Physiological Cost Index (PCI) which was calculated from heart rate estimated energy expenditure. Activity was measured with a pedometer. User function and quality of life were assessed using the Lower Limb Function Questionnaire (LLFQ) and Prosthetic Evaluation Questionnaire (PEQ). Long-term follow-up over 12 months were completed. Results: Walking speeds were the same for WAB and APSL knees. Energy expenditure (PCI) was lower for the ASPL knees (pu2009=u20090.007). Step counts were the same for both knees, and questionnaires indicated ASPL knee preference attributed primarily to knee stability and improved walking, while limitations included terminal impact noise. Nine of 10 participants chose to keep using the ASPL knee as part of the long-term follow-up. Conclusions: Potential benefits of the ASPL knee were identified in this study by functional measures, questionnaires and user feedback, but not changes in activity or the PEQ. Keywords: Amputee; artificial knee joint; energy expenditure; prosthesis; stance-phase control; transfemoral amputation, stance-phase control