ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2015
Data collection challenges in community settings: insights from two field studies of patients with chronic disease.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 33 papers, 1 of them a synthesis that pooled it.
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Who cites it
33 citing papers in PubMed, 1 synthesis or guideline pooled it.
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- The role of health-related quality of life in improving cancer outcomes.Journal of clinical and translational research · 2023Article
- Lessons learned on data collection for a digital health intervention-insights and challenges from Nigeria.SAGE open medicine · 2023Article
- Co-establishing an infrastructure for routine data collection to address disparities in infant mortality: planning and implementation.BMC health services research · 2022Article
- Human factors and ergonomics methods for pharmacy research and clinical practice.Research in social & administrative pharmacy : RSAP · 2021Review
- Usability-In-Place-Remote Usability Testing Methods for Homebound Older Adults: Rapid Literature Review.JMIR formative research · 2021Review
- REFINING AUTOMATIC SPEECH RECOGNITION SYSTEM FOR OLDER ADULTS.Proceedings of the ... IEEE International Conference on Acoustics, Speech, and Signal Processing. ICASSP (Conference) · 2021Article
- Conducting household surveys on reproductive health in urban settings: lessons from Karachi, Pakistan.BMC medical research methodology · 2021Article
- Motivators and barriers to research among doctors in the Indian medical scenario: A cross-sectional study from Karnataka, India.Journal of family medicine and primary care · 2020Article
- Untold Stories in User-Centered Design of Mobile Health: Practical Challenges and Strategies Learned From the Design and Evaluation of an App for Older Adults With Heart Failure.JMIR mHealth and uHealth · 2020Article
- Repurposing NGO data for better research outcomes: a scoping review of the use and secondary analysis of NGO data in health policy and systems research.Health research policy and systems · 2020Article
- Challenges in addressing the knowledge gap on endomyocardial fibrosis through community-based studies.Cardiovascular diagnosis and therapy · 2020Review
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
purposeCollecting 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.
methodsA 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.
resultsThe 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.
conclusionCollecting 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.
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