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Background and Objectives Understanding how older people experience independence has implications for person-centered care. Existing understanding of older people's experience of independence, generated through methods that provide a "snapshot" view of a person's independence at a given time point, provides little insight into the process of maintaining independence through time. The aim of this study was to explore older participants' perceptions to understand the processes and resources that were most important for maintaining independence. Research Design and Methods Two semistructured interviews were conducted longitudinally to explore the perspectives of 12 community-dwelling, older people, aged 76–85 years. A social constructivist approach, using dramaturgical and descriptive codes, facilitated the interpretation of the data. Sixteen analytical questions guided the exploration of participants' perceptions of independence through time. Results Older people suggested that objective representations underestimated, and omitted, important aspects of their independence through time. Some participants perceived "snapshot" judgments of their independence as insensitive to their individual values and context. Change over time required some participants to adapt their methods for maintaining independence. The stability of participants' sense of independence was value dependent and informed by the purpose a participant ascribed to maintaining independence. Discussion and Implications This study augments the understanding of independence as a complex and multifaceted construct. The findings challenge the congruence of common interpretations of independence with older people's views, showing areas of commonality, and discrepancy. Exploration of independence in terms of form and function provides an important understanding of how function takes precedence to form in determining the maintenance of independence through time. [ABSTRACT FROM AUTHOR]

Background: The diversity of patient experiences of orphan drug development has until recently been overlooked, with the existing literature reporting the experience of some patients and not others. The current evidence base (the best available current research) is dominated by quantitative surveys and patient reported outcome measures defined by researchers. Where research that uses qualitative methods of data collection and analysis has been conducted, patient experiences have been studied using content analysis and automatic textual analysis, rather than in-depth qualitative analytical methods. Systematic reviews of patient engagement in orphan drug development have also excluded qualitative studies. The aim of this paper is to review qualitative literature about how patients and other members of the public engage with orphan drug development. Methods: We conducted a systematic search of qualitative papers describing a range of patient engagement practices and experiences were identified and screened. Included papers were appraised using a validated tool (CASP), supplemented by reporting guidance (COREQ), by two independent researchers. Results: 262 papers were identified. Thirteen papers reported a range of methods of qualitative data collection. Many conflated patient and public involvement and engagement (PPIE) with qualitative research. Patients were typically recruited via their physician or patient organisations. We identified an absence of overarching philosophical or methodological frameworks, limited details of informed consent processes, and an absence of recognisable methods of data analysis. Our narrative synthesis suggests that patients and caregivers need to be involved in all aspects of trial design, including the selection of clinical endpoints that capture a wider range of outcomes, the identification of means to widen access to trial participation, the development of patient facing materials to optimise their decision making, and patients included in the dissemination of trial results. Conclusions: This narrative qualitative synthesis identified the explicit need for methodological rigour in research with patients with rare diseases (e.g. appropriate and innovative use of qualitative methods or PPIE, rather than their conflation); strenuous efforts to capture the perspectives of under-served, under-researched or seldom listened to communities with experience of rare diseases (e.g. creative recruitment and wider adoption of post-colonial practices); and a re-alignment of the research agenda (e.g. the use of co-design to enable patients to set the agenda, rather than respond to what they are being offered). [ABSTRACT FROM AUTHOR]