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Quality of Life Research
Gepubliceerd in: Quality of Life Research 5/2015

01-05-2015 | Patient Engagement Special Section

Data collection challenges in community settings: insights from two field studies of patients with chronic disease

Auteurs: Richard J. Holden, Amanda M. McDougald Scott, Peter L. T. Hoonakker, Ann S. Hundt, Pascale Carayon

Gepubliceerd in: Quality of Life Research | Uitgave 5/2015

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Abstract

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.
vorige artikel Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute
volgende artikel Building new roles and relationships in research: a model of patient engagement research
Literatuur
1.
Greenhalgh, J. (2009). The applications of PROs in clinical practice: What are they, do they work, and why? Quality of Life Research, 18(1), 115–123.CrossRefPubMed
2.
Higginson, I. J., & Carr, A. J. (2001). Measuring quality of life: Using quality of life measures in the clinical setting. British Medical Journal, 322(7297), 1297–1300.CrossRefPubMedCentralPubMed
3.
von Korff, M., Jensen, M. P., & Karoly, P. (2000). Assessing global pain severity by self-report in clinical and health services research. Spine, 25, 3140–3151.CrossRef
4.
Ráheim, M. (2006). Lived experience of chronic pain and fibromyalgia: Women’s stories from daily life. Qualitative Health Research, 16, 741–761.CrossRefPubMed
5.
Delvecchio Good, M. J., Browdin, P. E., Good, B. J., & Kleinman, A. (Eds.). (1992). Pain as human experience: An anthropological perspective. Berkley, CA: University of California Press.
6.
Doward, L. C., & McKenna, S. P. (2004). Defining patient-reported outcomes. Value in health, 7, S4–S8.
7.
8.
Coulter, A., & Ellins, J. (2006). Patient-focused Interventions: A review of the evidence. London: The Health Foundation.
9.
Eton, D. E. A. (2013). A systematic review of patient-reported measures of burden of treatment in three chronic diseases. Patient Related Outcome Measures, 4, 7–20.CrossRefPubMedCentralPubMed
10.
Bayliss, E. A., Steiner, J. F., Fernald, D. H., Crane, L. A., & Main, D. S. (2003). Descriptions of barriers to self-care by persons with comorbid chronic diseases. Annals of Family Medicine, 1, 15–21.CrossRefPubMedCentralPubMed
11.
Bayliss, E. A., Ellis, J. L., & Stiener, J. F. (2007). Barriers to self-management and quality-of-life outcomes in seniors with multimorbidities. Annals of Family Medicine, 5, 392–402.CrossRef
12.
Sabate, E. (2003). Adherence to long-term therapies: Evidence for action (pp. 1–194). Geneva (Switzerland): World Health Organization.
13.
McEntee, et al. (2009). Patient-, provider-, and system-level barriers to heart failure care. Journal of Cardiovascular Nursing, 24, 290–298.CrossRefPubMed
14.
Schoenberg, N. E., Amey, C. H., & Coward, R. T. (1998). Stories of meaning: Lay perspectives on the origin and management of noninsulin dependent diabetes mellitus among older women in the United States. Social Science and Medicine, 47, 2113–2125.CrossRefPubMed
15.
Braveman, P., Egerter, S., & Williams, D. R. (2011). The social determinants of health: Coming of age. Annual Review of Public Health, 32, 381–398.CrossRefPubMed
16.
Stetson, B., Schlundt, D., Rothschild, C., Floyd, J. E., Rogers, W., & Mokshagundam, S. P. (2011). Development and validation of The Personal Diabetes Questionnaire (PDQ): A measure of diabetes self-care behaviors, perceptions, and barriers. Diabetes Research and Clinical Practice, 91, 321–332.CrossRefPubMed
17.
Harkness, K., Spaling, M. A., Currie, K., Strachan, P. H., & Clark, A. M. (2014). A systematic review of patient heart failure self-care strategies. Journal of Cardiovascular Nursing. [Epub ahead of print].
18.
Israel, B. A., Krieger, J., Vlahov, D., Ciske, S., Foley, M., Fortin, P., et al. (2006). Challenges and facilitating factors in sustaining community-based participatory research partnerships: Lessons learned from the Detroit, New York City, and Seattle urban research centers. Journal of Urban Health, 83(6), 1022–1040.CrossRefPubMedCentralPubMed
19.
Israel, B. A., Schulz, A. J., Parker, E. A., & Becker, A. B. (1998). Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health, 19, 173–202.CrossRefPubMed
20.
Barkin, S., Schlundt, D., & Smith, P. (2013). Community-engaged research perspectives: Then and now. Academic Pediatric, 13(2), 93–97.CrossRef
21.
Reason, P., & Bradbury, H. (Eds.). (2008). The SAGE handbook of action research: Participative inquiry and practice. London: SAGE Publications Ltd.
22.
McIntyre, A. (2008). In V. Knight (Ed.), Participatory action research. Qualitative research methods series 52. Thousand Oaks, CA: Sage Publications, Inc.
23.
24.
Wallerstein, N., & Duran, B. (2010). Community-based participatory research contributions to intervention research: The intersection of science and practice to improve health equity. American Journal of Public Health, 100(S1), S40–S46.CrossRefPubMedCentralPubMed
25.
Viswanathan, M., Ammerman, A., Eng, E., Gartlehner, G., Lohr, K. N., Griffith, D., et al. (2004). Community-based participatory research: Assessing the evidence. Rockville, MD: AHRQ.
26.
Green, J., & Thorogood, N. (Eds.). (2009). Qualitative methods for health research (2nd ed.). Thousand Oaks, CA: Sage.
27.
Pope, C., & Mays, N. (2006). Qualitative research in health care (3rd ed.). Malden, MA: Blackwell Publishing Ltd.CrossRef
28.
Council, National. Research. (2011). Health care comes home: The human factors. Washington, DC: The National Academies Press.
29.
Holden, R. J., Carayon, P., Gurses, A. P., Hoonakker, P., Hundt, A. S., Ozok, A. A., et al. (2013). SEIPS 2.0: A human factors framework for studying and improving the work of healthcare professionals and patients. Ergonomics, 56(11), 1669–1686.CrossRefPubMed
30.
Tashiro, J. (2002). Exploring health promoting lifestyle behaviors of Japanese college women: Perceptions, practices, and issues. Health Care for Women International, 23, 59–70.CrossRefPubMed
31.
Greenhalgh, J., Long, A. F., & Flynn, R. (2005). The use of patient reported outcome measures in routine clinical practice: Lack of impact or lack of theory? Social Science and Medicine, 60, 833–843.CrossRefPubMed
32.
Fetters, M. D., Curry, L. A., & Creswell, J. W. (2013). Achieving integration in mixed methods designs—principles and practices. Health Services Research, 48(6pt2), 2134–2156.CrossRefPubMedCentralPubMed
33.
Scammon, D. L., et al. (2013). Connecting the dots and merging meaning: Using mixed methods to study primary care delivery transformation. Health Services Research, 48(6pt2), 2181–2207.CrossRefPubMedCentralPubMed
34.
Miller, W. L., et al. (2013). Integrating mixed methods in health services and delivery system research. Health Services Research, 48(6pt2), 2125–2267.CrossRefPubMedCentralPubMed
35.
36.
Holden, R. J., Or, C. K. L., Alper, S. J., Rivera, A. J., & Karsh, B. T. (2008). A change management framework for macroergonomic field research. Applied Ergonomics, 39, 459–474.CrossRefPubMed
37.
Carayon, P., et al. (2006). Work system design for patient safety: The SEIPS model. Quality & Safety in Health Care, 15, i50–i58.CrossRef
38.
39.
N.B.A.C. (2001). Ethical and policy issues in research involving human participants: Report and recommendations of the National Bioethics Advisory Commission. Rockville, MD: NBAC.
40.
Revicki, D., Hays, R. D., Cella, D., & Sloan, J. (2008). Recommended methods for determining responsiveness and minimally important differences for patient-reported outcomes. Journal of Clinical Epidemiology, 61, 102–109.CrossRefPubMed
41.
Fayers, P., & Machin, D. (Eds.). (2007). Quality of life: The assessment, analysis, and interpretation of patient-reported outcomes (2nd ed.). Hoboken, NJ: Wilen.
42.
Hjollund, N. H. I., Larsen, L. P., Biering, K., Johnsen, S. P., Riiskajaer, E., Schougaard, L. M. (2014). Use of patient-reported outcome (PRO) measures at group and patient levels: Experiences from the generic integrated PRO system, WestChronic. Interactive Journal of Medical Research, 3(1). doi:10.​2196/​ijmr.​2885
43.
Molinari, A. L., et al. (2011). Barriers to conducting research with Community-dwelling adults who have intellectual disabilities. Intellectual and Developmental Disabilities, 49(5), 392–396.CrossRefPubMed
44.
Wright, P. B., Curran, G. M., Stewart, K. E., & Booth, B. M. (2013). A qualitative analysis of provider barriers and solutions to HIV testing for substance users in a small, largely rural Southern state. The Journal of Rural Health, 29, 420–431.CrossRefPubMedCentralPubMed
45.
Lasker, R. D., & Weiss, E. S. (2003). Broadening participation in community problem solving: A multidisciplinary model to support collaborative practice and research. Journal of Urban Health, 80(1), 14–34.CrossRefPubMedCentralPubMed
46.
Fisher, E. B., Brownson, C. A., O’Toole, M. L., Shetty, G., Anwuri, V. V., & Glasgow, R. E. (2005). Ecological approaches to self-management: The case of diabetes. American Journal of Public Health, 95, 1523–1535.CrossRefPubMedCentralPubMed
47.
Richard, L., Gauvin, L., & Raine, K. (2010). Ecological models revisited: Their uses and evolution in health promotion over two decades. Annual Review of Public Health, 32, 307–326.CrossRef
48.
Walker, J., Holloway, I., & Sofaer, B. (1999). In the system: The lived experience of chronic back pain from the perspectives of those seeking help from pain clinics. Pain, 80, 621–628.CrossRefPubMed
49.
Forsythe, D. E. (1996). New bottles, old wine: Hidden cultural assumptions in a computerized explanation system for migraine sufferers. Medical Anthropology Quarterly, 10, 551–574.CrossRefPubMed
Metagegevens
Titel
Data collection challenges in community settings: insights from two field studies of patients with chronic disease
Auteurs
Richard J. Holden
Amanda M. McDougald Scott
Peter L. T. Hoonakker
Ann S. Hundt
Pascale Carayon
Publicatiedatum
01-05-2015
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 5/2015
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-014-0780-y

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