Dialysis Patient Perspectives on CKD Advocacy: A Semistructured Interview Study

American Journal of Kidney Diseases

Volumn 69, Issue 1, 2017, Pages 29-40

  Schober, Gregory S ^a,b   Wenger, Julia B ^a   Lee, Celeste C ^a   Oberlander, Jonathan ^a,c   Flythe, Jennifer E ^a,d  

^a UNIVERSITY OF NORTH CAROLINA SCHOOL OF MEDICINE   (United States)

^b UNIVERSITY OF TEXAS AT EL PASO   (United States)

^c University of North Carolina at Chapel Hill   (United States)

^d UNIVERSITY OF NORTH CAROLINA   (United States)

Author keywords

advocacy participation; altruism; chronic kidney disease (CKD); dialysis; dialysis community; disease awareness; education; fundraising; Health advocacy; interview; lobbying; patient activism; patient engagement; qualitative research

Indexed keywords

ADULT; ALTRUISM; ARTICLE; AWARENESS; CHRONIC KIDNEY DISEASE; CLINICAL ARTICLE; FEMALE; FINANCIAL MANAGEMENT; HEALTH STATUS; HEMODIALYSIS; HEMODIALYSIS PATIENT; HOME DIALYSIS; HUMAN; INTERPERSONAL COMMUNICATION; KNOWLEDGE; MALE; MIDDLE AGED; MOTIVATION; PATIENT ADVOCACY; PATIENT ATTITUDE; PATIENT PARTICIPATION; PATIENT TRANSPORT; PERITONEAL DIALYSIS; QUALITATIVE RESEARCH; SEMI STRUCTURED INTERVIEW; TIME; UNITED STATES; ATTITUDE TO HEALTH; INTERVIEW; RENAL INSUFFICIENCY, CHRONIC;

FEMALE; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; QUALITATIVE RESEARCH; RENAL DIALYSIS; RENAL INSUFFICIENCY, CHRONIC;

EID: 84996602595     PISSN: 02726386     EISSN: 15236838     Source Type: Journal    
DOI: 10.1053/j.ajkd.2016.06.018     Document Type: Article

References (22)

1. 1 Stevenson A, ed. Oxford Dictionary of English. Oxford, UK: Oxford University Press; 2010.
2. 2 Wright, J., Only your calamity: the beginnings of activism by and for people with AIDS. Am J Public Health 103:10 (2013), 1788–1798.
3. 3 Platner, J.H., Bennett, L.M., Millikan, R., Barker, M.D., The partnership between breast cancer advocates and scientists. Environ Mol Mutagen 39:2-3 (2002), 102–107.
4. 4 Braun, S., The history of breast cancer advocacy. Breast J 9:suppl 2 (2003), S101–S103.
5. 5 National Kidney Foundation. Advocacy & policy. https://www.kidney.org/advocacy. Accessed February 22, 2016.
6. 6 American Society of Nephrology. Kidney research is under-funded compared to the cost of care. http://www.asn-online.org/policy/webdocs/KidneyResearch.pdf, 2015. Accessed February 22, 2016.
7. 7 Center for Advancing Health. A new definition of patient engagement: what is engagement and why is it important? 2010. http://www.cfah.org/pdfs/CFAH_Engagement_Behavior_Framework_current.pdf. Accessed February 22, 2016.
8. 8 Mosen, D.M., Schmittdiel, J., Hibbard, J., Sobel, D., Remmers, C., Bellows, J., Is patient activation associated with outcomes of care for adults with chronic conditions?. J Ambul Care Manage 30:1 (2007), 21–29.
9. 9 Remmers, C., Hibbard, J., Mosen, D.M., Wagenfield, M., Hoye, R.E., Jones, C., Is patient activation associated with future health outcomes and healthcare utilization among patients with diabetes?. J Ambul Care Manage 32:4 (2009), 320–327.
10. 10 Hibbard, J.H., Mahoney, E., Toward a theory of patient and consumer activation. Patient Educ Couns 78:3 (2010), 377–381.
11. 11 Keller, A.C., Packel, L., Going for the cure: patient interest groups and health advocacy in the United States. J Health Polit Policy Law 39:2 (2014), 331–367.
12. 12 Rabeharisoa, V., From representation to mediation: the shaping of collective mobilization on muscular dystrophy in France. Soc Sci Med 62:3 (2006), 564–576.
13. 13 Putnam, R., Making Democracy Work: Civic Traditions in Modern Italy. 1993, Princeton University Press, Princeton, NJ.
14. 14 Tong, A., Sainsbury, P., Craig, J., Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 19:6 (2007), 349–357.
15. 15 Palinkas, L.A., Horwitz, S.M., Green, C.A., Wisdom, J.P., Duan, N., Hoagwood, K., Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Adm Policy Ment Health 42:5 (2015), 533–544.
16. 16 Biernacki, P., Waldorf, D., Snowball sampling: problems and techniques of chain referral sampling. Soc Methods Res 10:2 (1981), 141–163.
17. 17 Goodman, L., Snowball sampling. Ann Math Stat 32:1 (1961), 148–170.
18. 18 Fusch, P., Ness, L., Are we there yet? Data saturation in qualitative research. Qual Rep 20:9 (2015), 1408–1416.
19. 19 Liamputtong, P., Qualitative Research Methods. 2009, Oxford University Press, New York, NY.
20. 20 Kvale, S., Interviews: An Introduction to Qualitative Research Interviewing. 1996, Sage Publications, Thousand Oaks, CA.
21. 21 Glaser, B., Strauss, A., The Discovery of Grounded Theory: Strategies for Qualitative Research. 2008, Aldine Transaction, New Brunswick, NJ.
22. 22 End Stage Renal Disease Network 5, Mid-Atlantic Renal Coalition. Peer Up! Program Toolkit. http://esrdnet5.org/Peer-Up!-Program-Toolkit.aspx. Accessed February 22, 2016.