30 research outputs found

    Assessing Health-Related Quality of Life and Subjective Well-Being in Adults with Spinal Cord Injury

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    This dissertation contributes to the scholarship on health outcomes among individuals with spinal cord injury (SCI). SCI is a dramatic, life-changing trauma that requires long-term and evolving care. Life with SCI entails learning to self-care, acquiring the right wheelchair, home adaptations, and learning to move inside and outside the home. Improving health outcomes measurement of this subgroup may benefit them by making SCI care more patient-centered, i.e. reflective of patients’ preferences and values. Three studies were conducted: (1) an assessment of associations between health-related quality of life (HRQOL) and evaluative well-being (EWB) measures collected in the United States (U.S.) Patient Reported Outcomes Measurement Information System (PROMIS�) project (Chapter 2); (2) a comparison of perceptions of quality of life (QOL) among adults with SCI in the U.S. versus the United Kingdom (UK) (Chapters 3 and 4); and (3) development and psychometric evaluation of a Fatigability Index for full-time wheelchair users with SCI (Chapter 5). The first study provides further evidence that there is an empirical overlap between HRQOL and EWB. The second study found that for adults living with SCI, good QOL is essential for successful rehabilitation. Differences between interviewees from the US and the UK in perceived medical care and functional adjustment suggest that factors affecting QOL may relate to broader health system characteristics. Also, understanding what HRQOL and subjective well-being (SWB) measures are valued by adults living with SCI can lead to selection of informative instruments, which could help clinicians to complement and tailor established care and rehabilitation protocols for individual needs. Specifically, measuring and managing fatigue in the context of SCI is important. The third study developed an instrument assessing physical and mental fatigability in adults with SCI. The instrument covers a comprehensive list of health problems and activities associated with fatigue. The psychometric evaluation shows high measurement precision in discriminating among individuals with a relatively wide range of fatigability. The resulting patient chart, the Fatigability Vector, highlights causes of fatigue and areas requiring immediate intervention

    Understanding sleep facilitators, barriers, and cultural dimensions in Native American urban youth.

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    OBJECTIVES: American Indian/Alaska Native (AI/AN) youth are a high-risk group for sleep problems and associated chronic conditions. Urban AI/AN youth may face certain challenges, including specific psychosocial stressors (e.g., discrimination) and environmental factors (e.g., noise, light) that render them particularly vulnerable to poor sleep health. However, few studies have explored AI/AN adolescent sleep. To our knowledge, this is the first study to use systematic qualitative methods with AI/AN youth to explore their sleep environment and sleep behaviors. DESIGN: In-depth interviews with 26 youth. SETTING: Two urban areas in Central and Southern California. PARTICIPANTS: Urban-dwelling AI/AN youth, age 12-16 years. INTERVENTION: N/A. MEASUREMENT: N/A. RESULTS: We identified five main themes, each with subthemes: sleep patterns and desired sleep, sleep barriers inside the home, environmental factors, sleep facilitators, and cultural dimensions. Key concerns discussed were poor sleep hygiene, excessive use of electronics prior to bedtime, issues with temperature regulation, and noise both within and outside the home. Parents can be an important vehicle for messaging around sleep health and for behavior management. Participating adolescents also indicated differing levels of attachment to Native identity, suggesting that culturally-targeted sleep interventions should build in openness and flexibility to a range of identity starting points. Further, we identified cultural practices, such as sweat lodges and dreamcatchers, that could be incorporated in future sleep interventions for this population. CONCLUSION: Findings increase our understanding of urban AI/AN youths sleep environments and behaviors, thus potentially informing program development around sleep health for this vulnerable population
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