caa a22 4500 606180184 CHVBK 20210128100804.0 cr unu---uuuuu 210128e20150501xx s 000 0 eng 10.1007/s11136-014-0780-y doi (NATIONALLICENCE)springer-10.1007/s11136-014-0780-y Data collection challenges in community settings: insights from two field studies of patients with chronic disease [Elektronische Daten] [Richard Holden, Amanda McDougald Scott, Peter Hoonakker, Ann Hundt, Pascale Carayon] Purpose: Collecting information about health and disease directly from patients can be fruitfully accomplished using contextual approaches, ones that combine more and less structured methods in home and community settings. This paper's purpose was to describe and illustrate a framework of the challenges of contextual data collection. Methods: A framework is presented based on prior work in community-based participatory research and organizational science, comprised of ten types of challenges across four broader categories. Illustrations of challenges and suggestions for addressing them are drawn from two mixed method, contextual studies of patients with chronic disease in two regions of the USA. Results: The first major category of challenges was concerned with the researcher-participant partnership, for example, the initial lack of mutual trust and understanding between researchers, patients, and family members. The second category concerned patient characteristics such as cognitive limitations and a busy personal schedule that created barriers to successful data collection. The third concerned research logistics and procedures such as recruitment, travel distances, and compensation. The fourth concerned scientific quality and interpretation, including issues of validity, reliability, and combining data from multiple sources. The two illustrative studies faced both common and diverse research challenges and used many different strategies to address them. Conclusion: Collecting less structured data from patients and others in the community is potentially very productive but requires the anticipation, avoidance, or negotiation of various challenges. Future work is necessary to better understand these challenges across different methods and settings, as well as to test and identify strategies to address them. Springer International Publishing Switzerland, 2014 Community-based participatory research nationallicence Field study nationallicence Methodology nationallicence Mixed methods nationallicence Chronic illness nationallicence Patient engagement nationallicence Holden Richard Department of BioHealth Informatics, Indiana University School of Informatics and Computing, Indiana University-Purdue University Indianapolis, Walker Plaza (WK), 719 Indiana Avenue, WK 319, 46202, Indianapolis, IN, USA aut McDougald Scott Amanda Institute on Family and Neighborhood Life, Clemson University, Clemson, SC, USA aut Hoonakker Peter Center for Quality and Productivity Improvement, University of Wisconsin-Madison, Madison, WI, USA aut Hundt Ann Center for Quality and Productivity Improvement, University of Wisconsin-Madison, Madison, WI, USA aut Carayon Pascale Center for Quality and Productivity Improvement, University of Wisconsin-Madison, Madison, WI, USA aut Quality of Life Research Springer International Publishing 24/5(2015-05-01), 1043-1055 0962-9343 24:5<1043 2015 24 11136 https://doi.org/10.1007/s11136-014-0780-y text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s11136-014-0780-y text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Holden Richard Department of BioHealth Informatics, Indiana University School of Informatics and Computing, Indiana University-Purdue University Indianapolis, Walker Plaza (WK), 719 Indiana Avenue, WK 319, 46202, Indianapolis, IN, USA aut NATIONALLICENCE 700 1- McDougald Scott Amanda Institute on Family and Neighborhood Life, Clemson University, Clemson, SC, USA aut NATIONALLICENCE 700 1- Hoonakker Peter Center for Quality and Productivity Improvement, University of Wisconsin-Madison, Madison, WI, USA aut NATIONALLICENCE 700 1- Hundt Ann Center for Quality and Productivity Improvement, University of Wisconsin-Madison, Madison, WI, USA aut NATIONALLICENCE 700 1- Carayon Pascale Center for Quality and Productivity Improvement, University of Wisconsin-Madison, Madison, WI, USA aut NATIONALLICENCE 773 0- Quality of Life Research Springer International Publishing 24/5(2015-05-01), 1043-1055 0962-9343 24:5<1043 2015 24 11136