Liisa Holsti

Children Living with Health Complexity (CLHC) require continuity of health and community care to improve their quality of life and decrease family care burden. Due to medical complexity and numerous chronic conditions, these children rely heavily on multiple care providers. However, a fragmented health system and the communication challenges between stakeholders poses many obstacles for their caregivers, and the result is non-optimal care in both hospital and community. This leads to an immense burden on families who take on dual roles and become responsible for care coordination. Parent caregivers must continually manage and share masses of paper documents and repeat their child’s story for different stakeholders. A digital information management and care coordination solution to support these caregivers is long overdue.Our goal was to engage with parent caregivers of CLHC through the user-centered design process to understand their needs in a digital solution. Twelve caregivers participated in three rounds of user studies which were followed by design phases. In the first phase of the study, we aimed to understand the caregiver challenges, pain-points and strategies for dealing with masses of paper and electronic data. By utilizing thematic analysis, we found a set of caregiver challenges which closely aligned with previous research: access to health records, navigating the care system, organizing and managing information, finding resources, repeating their story, and managing finances. We mapped these challenges to the caregiver strategies and devised a set of design principles to address these challenges. We also collected data on caregivers’ feature preferences in a digital solution. Our emergent design principles are: providing a holistic view of patient care, allowing customizability and flexibility, personalizing and humanizing, facilitating communication and collaboration with care providers, avoiding jargon, capturing health history and providing insight, sharing and accessing confidentially, and integrating information. Finally, we developed an extensive prototype blueprint through an iterative process of feedback and design to serve as an example for implementing these design principles in a caregiver-centered interface. The design principles and the prototype are intended to be a stepping stone for developing the content and features of a caregiver-centered information management system.

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Introduction: Toe walking may develop with early ambulation, but is considered abnormal in healthy children after three years of age. Idiopathic toe walking is a diagnosis of exclusion characterized by forefoot weight bearing and lack of heel contact with the floor. This condition may be associated with pain in the legs or feet, frequent tripping or falling, and ankle injuries. In British Columbia, treatment for toe walking varies from physiotherapy, casts or braces, Botulinum toxin A injections into calf muscles, and/or surgery. Little evidence exists regarding long-term treatment effects. Objectives: To determine the natural history of idiopathic toe walking and the long-term impact of treatment on gait outcomes and severity of toe walking. Potential activity limitations and participation restrictions were also explored.Methods: Gait analysis data and severity of toe walking were compared from baseline to follow-up in 44 adolescents and young adults diagnosed with idiopathic toe walking between 1997 and 2005 in a non-experimental retrospective cohort study. Participants were grouped as receiving no treatment other than stretching exercises (n=20) or treatment (n=24), including casting +/- Botulinum toxin A injections (n=23) or tendo-Achilles lengthening (n=1). Levels of activity and participation were assessed using the Pediatric Outcomes Data Collection Instrument for adolescents and the Medical Outcomes Study 36-Item Short Form Survey Instrument for young adults. Results: Ankle kinematics improved in the treatment group only whereas improved ankle kinetics and compensatory knee hyperextension were observed in both groups. Ankle moments remained atypical in 89% of the participants at follow-up. Clinical ankle dorsiflexion decreased over time in both groups. Statistically significant differences in severity at follow-up were found only in the treatment group (p
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BACKGROUND: Motivation, a key factor influencing pediatric rehabilitation outcomes, is rarely measured in clinical settings and limited research has explored this construct. Currently, no scale exists with which to measure motivation during rehabilitation from a child’s perspective. PURPOSE: To review evidence about the effects of motivational interventions in children and youth with acquired brain injury (ABI) and to examine the application of Self Determination Theory (SDT) in the rehabilitation context. Based upon tenets of SDT, the aim of this pilot research was to develop an instrument, the Pediatric Motivation Scale (PMOT), to assess motivation from a child’s perspective.METHODS: This study involved two phases. Phase 1 established the PMOT content validity through: a) literature reviews related to motivation in ABI, SDT, and motivation measures; and b) expert feedback from 12 clinicians providing rehabilitation to children who have sustained either acquired brain injury (ABI) or orthopedic injury (OI). During Phase 2, the PMOT was field tested with 12 children with ABI, 9 children with OI, and 20 healthy children serving as controls. Face validity, response process, test-retest reliability, and internal consistency were examined. In addition, convergent validity was explored by comparing therapists' observations of the child's motivation, using the Pediatric Volitional Questionnaire (PVQ). Pearson Product Moment correlations were used to analyze sub-scale correlations, test-retest reliability, and the relationship between the PMOT and the PVQ; Cronbach's alpha was used to measure internal consistency.RESULTS: Literature review revealed a need for the development of valid and reliable measures of motivation in rehabilitation. Preliminary psychometric evaluation of the PMOT indicates strong internal consistency for the scale as a whole (α = .96) and for the subscales (α =.79 to .91). The PMOT was moderately correlated with the PVQ in the rehabilitation subsample (r=.71, p<.01 however="" no="" correlation="" was="" found="" in="" the="" healthy="" subsample="">.05). Test-retest reliability was excellent (r=.97).CONCLUSIONS: This study provides strong preliminary evidence for psychometric properties of the PMOT for use with children in rehabilitation post ABI or OI. Future research is recommended to build upon these pilot findings for the ongoing development of this scale.

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Background: Acquired brain injury (ABI) affects considerable numbers of Canadians every year, resulting in a range of functional impairments requiring rehabilitation. Virtual reality (VR) is a relatively new treatment approach being used increasingly for this purpose. A lack of research documents current practice in VR use, along with the barriers, facilitators and support needs of therapists expected to adopt the technology.Purpose: This research aimed to describe how the GestureTek VR system was being used clinically in ABI rehabilitation, to outline preliminary work addressing the resource needs of clinicians, to examine factors influencing therapists’ adoption of VR and to evaluate the impact of a multi-faceted knowledge translation (KT) intervention at mediating these factors to facilitate VR implementation.Hypotheses: The KT intervention will be associated with improvements in therapists' perceived ease of use and self efficacy in using the technology, and an associated increase in their intentions to use VR.Methods: A single group pretest-posttest design was used to examine the determinants of VR adoption as proposed by the Decomposed Theory of Planned Behaviour and to evaluate change following KT. The intervention included interactive education, the provision of clinical protocols and technical and clinical support. Forty-two therapists from two health centres completed the ADOPT-VR outcome measure. Descriptive measures recorded the nature of therapists’ use of VR with 29 clients. Related-samples Wilcoxon signed ranks tests were used to evaluate pretest-posttest changes in hypothesis variables. Descriptive statistics and content analysis were used to analyse nominal and qualitative data, respectively.Results: Differences existed between clinical application and existing research in both treatment and client characteristics. Overall, therapists had positive attitudes and intentions to use VR. Increases in perceived ease of use and self efficacy, but not behavioural intention, were observed following KT. The most significant barriers to VR use included time and client factors, while primary facilitators included peer influence and organisational-level supports.Conclusion: Preliminary knowledge of current VR practice trends can assist in the design of clinically relevant ABI research. Barriers and facilitators can be targeted by management to support VR implementation. Therapists’ identified knowledge and support needs can inform future KT strategies.

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Purpose: The timing of physiotherapy intervention for optimal motor outcomes in children with cerebral palsy (CP) remains unknown. Dynamic Systems Theory (DST) suggests this timing is during transition periods when new motor behaviour is emerging; transition periods are identified by increased variability in motor performance. Additionally, factors within the child and environment are thought to influence motor acquisition. The aim of this study was to explore the relationships between these factors and motor acquisition in young children with CP. Specifically the following were examined: 1. a) Variability in motor abilities during a preceding time interval,b) Variability in motor performance during a preceding time interval,2. Child factors, and3. Environmental factors.Methods: For this case series, the sample comprised five children with CP, aged three to five years, and classified in levels I to III of the Gross Motor Function Classification System. Each child’s gross motor abilities and performance were assessed during ten home visits using the Gross Motor Function Measure and the Quality FM respectively. Mastery motivation and engagement in daily life were assessed through questionnaires. Environmental factors were described using field notes at each home visit.Results: No associations were found between a) variability in motor abilities or b) variability in motor performance and subsequent motor acquisition in each child individually nor when data were pooled across children. Mastery motivation was inversely associated with motor change (rs=-0.90, p=0.04) for the pooled data set. Child engagement and GMFM scores were not related nor were there trends in field note data with GMFM change scores.Conclusions: Although this study failed to identify associations between the factors explored, the results were likely impacted by the inability of the measurement tools used to capture subtle changes in motor behaviour in this sample. Further investigation is warranted using a larger, diverse sample of children with CP using nonlinear tools designed to measure movement variability. Greater understanding of the implications of variability on the emergence of motor abilities in this population could offer critical insight into how children with CP acquire motor abilities and select optimal motor strategies under task constraints.

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Purpose: (1) to describe mothers’ experiences of an interdisciplinary feeding team process for their child with a feeding disorder; (2) to explore the perspectives of mothers as they implement recommendations from the feeding team.Methods: In this qualitative descriptive phenomenological study, nine mothers whose child had a complex feeding disorder and who recently went through an interdisciplinary feeding assessment participated in two semi-structured interviews. The first interview took place just after the feeding assessment, while the second was conducted a few months later. Colaizzi’s method of data analysis was used to analyze the data. Findings: Five themes emerged from the analysis. 'Taking Action' reflects the recognition and the action that was being taken by mothers to address their child’s feeding disorder. 'The Balancing Act' describes the range of experiences that mothers identified during the interdisciplinary assessment process. 'The Impact' reflects the mix of emotions that mothers experience at the conclusion of the feeding assessment, as well as the knowledge and insight gained regarding their child’s feeding. 'We Are On Our Own' represents the process of positive change that mothers go through as they implement recommendations from the team; and finally, 'We Can Now Move Forward' describes the restoration of balance in the lives of mothers as they adapt to the recommendations provided by the team. Knowledge gained from the feeding team facilitates mothers’ acceptance of their child’s feeding difficulties and helps them to look towards the future with renewed hope. The stressors that mothers’ experienced prior to the feeding assessment had an impact on their experience of the assessment. Mothers described uncertainties and anxieties prior to and during the feeding assessment. These stressors have the potential to be alleviated with increased communication with families.Implications: This study has highlighted the importance of using an interdisciplinary team to address paediatric feeding difficulties. In addition, the findings suggest that receiving knowledge helps to facilitate problem-focused coping in mothers. Understanding the broader impact of an interdisciplinary feeding team on decreasing caregiver stress is critical for further legitimizing the service and ensuring funding when the healthcare system is already strained.

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