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The development of a tool to track participation in activity-based therapy (ABT) for people with spinal cord injury or disease (SCI/D) was identified as a priority of the Canadian ABT Community of Practice. The objective of this study was to understand multi-stakeholder perspectives on tracking ABT participation across the continuum of care. Forty-eight individuals from six stakeholder groups (persons living with SCI/D; hospital therapists; community trainers; administrators; researchers; and funders, advocates and policy experts) were recruited to participate in focus group interviews. Participants were asked open-ended questions concerning the importance of and parameters around tracking ABT. Transcripts were analyzed using conventional content analysis. Themes reflected the Who, What, Where, When, Why and How of tracking ABT. Participants described the importance of involving hospital therapists, community trainers and individuals with SCI/D in tracking ABT to capture both subjective and objective parameters across the continuum of care and injury trajectory. Digital tracking tools were favoured, although paper-based versions were regarded as a necessity in some circumstances. Findings highlighted the importance of tracking ABT participation for individuals with SCI/D. The information may guide the development of ABT practice guidelines and support the implementation of ABT in Canada. Tracking the details of activity-based therapy (ABT) sessions and programs across the continuum of care and injury trajectory may provide important information to support the development of ABT practice guidelines and implementation strategies. Tracking objective and subjective parameters are needed to provide a comprehensive description of an ABT session and program. Clinicians and individuals with spinal cord injury or disease (SCI/D) should both be able to track ABT to accommodate all settings and types of data. Digital tracking tools, such as an app, may provide an accessible, versatile and efficient way of tracking ABT. [ABSTRACT FROM AUTHOR]

Self-management can lead to increased self-efficacy and improved quality of life for individuals with chronic conditions; however, there is little research exploring how self-management approaches can be used for chronic communication disorders, such as aphasia. Modifications to self-management approaches would be required to accommodate for aphasia; therefore, the input of people with aphasia (PwA) should be sought. The aims of the present study were: (1) To investigate and document the experiences and perspectives of PwA regarding self-management; (2) To explore how technology can be used to support aphasia self-management. In-depth, semi-structured interviews were conducted with 26 PwA living in Australia. Qualitative content analysis was used to analyse interview data. Analysis resulted in six themes: (1) In self-management, PwA take control of life with aphasia and assume responsibility for engaging in opportunities to improve overall communication; (2) Community aphasia groups are important enablers of self-management because they facilitate peer support; (3) Communication partners (CPs) provide multifaceted support in aphasia self-management; (4) SLPs provide integrated support and coordination in aphasia self-management; (5) Technology supports PwA to self-manage speech therapy and communication in daily life; (6) Psychological and physical health issues and societal factors may impact aphasia self-management abilities. From the perspective of PwA, aphasia self-management involves enhancing skills enabling communication and life participation. PwA are central to aphasia self-management, with support provided by CPs, peers, and SLPs. Technology has a range of applications in aphasia self-management. PwA identified potential personal and contextual barriers that may impact self-management. For people with aphasia, engaging in conversation and social interaction are primary means of managing/improving communicative life participation; therefore, this should be a key focus of aphasia self-management programs. Aphasia self-management approaches should maximise the use of available support and provide tailored information, education, and training in the area of self-management to key stakeholders (people with aphasia, communication partners, and speech-language pathologists). People with aphasia should be supported to use technology for aphasia self-management, encompassing communication specific and daily life use. People with aphasia should be heavily involved in the development of structured aphasia self-management approaches. [ABSTRACT FROM AUTHOR]

The purpose of the current review is to synthesize the evidence of patients' perspectives of recovery after hip fracture across the care continuum. A systematic search was conducted, focusing on qualitative data from hip fracture patients. Screening, quality appraisal, and a subset of articles for extraction were completed in duplicate. Themes were generated using a thematic synthesis of data from original studies. Fourteen high-quality qualitative studies were included. Four review themes were identified: recovery as participation, feelings of vulnerability, driving recovery, and reliance on support. Patients considered recovery as a return to pre-fracture activities or "normal" enabling independence. Feelings of vulnerability were observed irrespective of the time since hip fracture and only diminished when recovery of function and activities enabled participation in valued activities, e.g., outdoor mobility. Participants expressed a desire to engage in recovery with realistic expectations and the benefits of meaningful feedback reported. While reliance on healthcare professionals decreased towards a later stage of recovery, reliance on social support persisted until recovery was perceived to have been achieved. Patient perspectives highlighted hip fracture as a major life event requiring health professional and social support to overcome feelings of vulnerability and enable active engagement in recovery. Rehabilitation professionals should ensure expectations and goals are set early in the recovery process. Rehabilitation professionals should ensure goals set with patients are tailored to the individual's pre-fracture activities or "normal" promoting independence. Rehabilitation professionals should monitor goals ensuring they are providing support, motivation, and managing expectations across the care continuum. Rehabilitation professionals should address patients' feelings of vulnerability, particularly in the absence of social support, and ensure appropriate ongoing input to maximize recovery. [ABSTRACT FROM AUTHOR]

To identify the impact of upper limb spasticity on stroke survivors by linking their shared experience to the International Classification of Functioning, Disability, and Health (ICF). Ten community dwelling adults with a chronic stroke and spasticity, who had completed an upper limb rehabilitation trial participated in semi-structured interviews. Data were analysed using content analysis and linked to the ICF Comprehensive Core Set for stroke using standard linking rules. Four hundred and thirty-nine meaningful concepts eligible for linking were identified. The majority (n = 178) linked to Body Function, n = 137 to Activities and Participation, n = 115 to Environmental Factors, and n = 9 to Body Structures. Sixty-two of the 130 Comprehensive Core Set categories were used; an additional eight were required to fully represent experience. Stroke survivors with upper limb spasticity use words and discuss topics concentrated around mental functions, functions of the joints and bones, muscles and movements, carrying, moving and handling objects, support and relationships with immediate family and health professionals, products and technology, and health services. Half of the Comprehensive Core Set categories for stroke were relevant, but to adequately capture experience an additional eight were needed. The ICF category profile may be unique to our participants or may suggest further research is needed to determine if additions to core set categories are required. Our ICF mapping demonstrated that the Brief Core Set for stroke was not sufficient to capture the range of experience for stroke survivors with upper limb spasticity, instead the Comprehensive Core Set for stroke supplemented with eight clinical-cohort specific second-level-categories should be used. Our findings suggest that rehabilitation may better reflect lived experience if it focuses on Body Function (Chapters 1, 2, 4, 7), Activity and Participation (Chapters 1–9), and Environment (Chapters 1, 2, 3, 5) because Body Structure was rarely mentioned in this or previous post-stroke ICF mapping research. [ABSTRACT FROM AUTHOR]

Purpose: To describe shared meanings of success, happiness, and health of adults with cerebral palsy and physiotherapists. Materials and methods: Ethnography employed open ended/semi-structured interviews and structured questionnaires (Satisfaction with Life Scale, Beck Depression Inventory-II®, Oxford Happiness Questionnaire, Life Habits Questionnaire, Medical Outcomes Study-Social Support Survey, and PROMIS® Pain Interference Scale). Content analysis of qualitative data and principal components analysis of questionnaire responses identified shared meanings. Results: Fourteen adults with cerebral palsy and 15 physiotherapists (median age 46) had similar levels of education. For both groups, social achievements, personal goals, employment, and supporting a family defined success. Adults with cerebral palsy more frequently identified tenacity and persistence as important for success. Both groups described happiness as spending time with loved ones, recreational activities, and having purpose in life. Adults with cerebral palsy identified the importance of self-acceptance for happiness. For both, health included self-care of mind/spirit, cardiovascular and musculoskeletal wellness, and physical fitness (the ability to perform physical tasks). Analysis of questionnaire responses identified shared meanings (eigenvalue 41, 95% explained variance). Conclusions: Adults with cerebral palsy and physiotherapists share similar experiences, behaviors, and feelings about success, happiness, and health. This knowledge may improve communication, enhance evidence-based practice, and foster services to support wellbeing. Cerebral palsy is a life-long condition, but we know little about social and physical outcomes for adults with cerebral palsy. Lack of understanding about meanings of success, happiness, and health may be a barrier for consumers accessing and for providers delivering evidence-based services. Physiotherapists and adults with cerebral palsy share similar meanings (feelings, experiences, beliefs, behaviors) of success, happiness, and health- or wellbeing. Knowledge of this common ground may result in improved communication between providers and consumers, and foster more relevant and meaningful services to support the wellbeing of adults with cerebral palsy. [ABSTRACT FROM AUTHOR]

Purpose: This study investigated two of the stresses experienced by parents caring for offspring with Angelman syndrome (AS) and Prader-Willi syndrome (PWS) in Western Australia, and identified their coping strategies. Methods: Parents of 19 offspring with AS and PWS participated in the Family Stress and Coping Interview which provides a stress level score, and a discussion of stressors and coping methods associated with 24 life situations, two of which are reported. All text was examined using directed content analysis. Results: Family carers (14/19) reported high stress associated with the initial diagnosis of AS or PWS in their offspring; and finding time for themselves. Stressors identified included lack of quality information about the disorder, time constraints and physical and emotional tiredness. Parents adopted a variety of coping strategies, including learning about the disorder, accepting the situation, seeking instrumental and social supports and dealing with problems. Conclusions: No specific coping strategy was associated with reduced stress. However, parents felt that accurate and timely information during the diagnostic period helped. Parents used family and community support although there were difficulties accessing respite care. It is advised that government agencies, service providers, family members and peer support associations should provide practical and emotional support to assist the parents of offspring with AS and PWS, and indeed any form of intellectual disability, across the lifespan. [ABSTRACT FROM AUTHOR]

Purpose:To examine the usability of the self-report instrument, Your Ideas about Participation and Environment (YIPE), among adults with a brain injury by exploring the value and acceptability of the instrument. Methods:A qualitative descriptive research design was used for the purpose of testing and developing the YIPE for use among adults with a brain injury. The study involved administering the YIPE followed by in-depth interviewing about the experience of taking the instrument with seven adults with a brain injury, recruited through a community-based support service organization. A descriptive thematic approach was used to analyse the content of the interview data, categorize common ideas and identify areas for improvement within the instrument. Results:Participants were generally positive about the importance of the participation and environment topics and willing to engage in self report. The YIPE (2012), resulting from changes made to the language and structure, was found to be more useable, valued and accepted by these participants than the previous version, YIPE (2011). Conclusions:The YIPE was found to be a useful tool among study participants. The YIPE topics were found to have importance and relevance when considering participants’ satisfaction with areas of life and aspects of environment requiring change. More development of the tool is required in terms of the wording, format and method of administration to improve the overall usability of the instrument.Implications for RehabilitationThe preliminary results from this small sample study illustrated that people with brain injury were able to use an International Classification of Functioning, Disability and Health-based tool, and confirmed the importance of considering both participation and the environment together.People with cognitive impairments associated with brain injury reported on areas of everyday life where they were satisfied or dissatisfied. They related their satisfaction to environmental factors that were facilitators or barriers to valued everyday activities. The opportunity to choose important life areas promotes individuals’ motivation to engage and enables service providers to tailor rehabilitation.In the course of the two stages of research, it was necessary to make minor modifications to the language, structure and scoring system of the tool, to simplify the task and shorten the time to interview participants. [ABSTRACT FROM PUBLISHER]

Purpose: School reintegration following children's traumatic brain injury (TBI) is still poorly understood from families' perspectives. We aimed to understand how both unique and common experiences during children's school reintegration were explained by parents to influence the family. Methods: Data came from an investigation using descriptive phenomenology (2005-2007) to understand parents' experiences in the first five years following children's moderate to severe TBI. Parents ( N = 42 from 37 families in the United States) participated in two 90-min interviews (first M = 15 months; second M = 27 months). Two investigators independently coded parents' discussions of school reintegration using content analysis to understand the unique and common factors that parents perceived affected the family. Results: Parents' school negotiation themes included the following: (1) legal versus moral basis for helping the child; (2) inappropriate state and local services that did not consider needs specific to TBI; and (3) involvement in planning, implementing and evaluating the child's education plan. Parents perceived that coordinated and collaboration leadership with school personnel lessened families' workload. Families who home-schooled had unique challenges. Conclusions: School reintegration can add to family workload by changing roles and relationships and by adding to parents' perceived stress in managing of the child's condition. [ABSTRACT FROM AUTHOR]