Studies examining participation as defined by the International Classification of Functioning, Disability and Health (ICF) as well as autonomy among the spinal cord injury population (SCI) are only starting to emerge. Little research has looked at how this population perceives their health status and the role this plays in active participation within their lives. This exploratory study was developed to determine whether the perception of health has an impact on participation and autonomy among adults with SCI. A convenience sample of adults with SCI currently receiving outpatient services from a rehabilitation hospital completed the online questionnaire. Forty-two subjects responded and were categorized into 2 groups: Group 1, positive perceived health, and Group 2, negative perceived health. The sample completed the Impact on Autonomy and Participation (IPA) that has 5 subscales (autonomy indoors, family role, autonomy outdoors, social life, and work/education) and demographic questions. Multivariate analysis of variance (MANOVA) revealed that perceived health had a significant impact on family roles, autonomy outdoors, social life, and work/education. Perceived health did not have a significant impact on autonomy indoors. The perception of health may have an impact on participation and autonomy within the areas of family role, outdoors, work/education, and social life. Implications for rehabilitation are included.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4981011 | PMC |
http://dx.doi.org/10.1310/sci2203-165 | DOI Listing |
Palliat Support Care
January 2025
Department of Pediatrics, Faculty of Medicine, University of Ottawa, Ottawa, Canada.
Objectives: Explore humanitarian healthcare professionals' (HCPs) perceptions about implementing children's palliative care and to identify their educational needs and challenges, including learning topics, training methods, and barriers to education.
Methods: Humanitarian HCPs were interviewed about perspectives on children's palliative care and preferences and needs for training. Interviews were transcribed, coded, and arranged into overarching themes.
Palliat Support Care
January 2025
School of Nursing and Midwifery, University of Plymouth, Plymouth, UK.
Objectives: People with life-limiting diseases, who are no longer receiving active or curable treatment, often state their preferred place of care and death as the home. This requires coordinating a multidisciplinary approach, using available health and social care services to synchronize care. Family caregivers are key to enabling home-based end-of-life support; however, the 2 elements that facilitate success - coordination and family caregiver - are not necessarily associated as being intertwined or one and the same.
View Article and Find Full Text PDFParasitology
January 2025
CUNY Institute for Implementation Science in Population Health, City University of New York, NY, NY, Chile.
While telegenetic counseling has increased substantially since the start of the COVID-19 pandemic, previous studies reported concerns around building rapport, nonverbal communication, and the patient-counselor relationship. This qualitative evaluation elicited feedback from genetic counselors, referring clinicians, and patients from a single healthcare organization to understand the user-driven reasons for overall satisfaction and experience. We conducted 22 in-depth, semi-structured interviews with participants from all 3 groups between February 2022 and February 2023.
View Article and Find Full Text PDFCirc Genom Precis Med
January 2025
Centre for Heart Lung Innovation, University of British Columbia, Vancouver. (K.H., M.A., L.R., Y.L., A.S., H.H., L.R.B., Z.W.L.).
Background: Protein-truncating mutations in the titin gene are associated with increased risk of atrial fibrillation. However, little is known about the underlying pathophysiology.
Methods: We identified a heterozygous titin truncating variant (TTNtv) in a patient with unexplained early onset atrial fibrillation and normal ventricular function.
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