Reluctance of patients with chronic obstructive pulmonary disease in its early stages and their families to participate in a partnership-based self-management trial: A search for explanation.

Helga Jónsdóttir, Thorbjörg Sóley Ingadóttir
Author Information
  1. Helga Jónsdóttir: 1 Faculty of Nursing, School of Health Sciences, University of Iceland, Reykjavik, Iceland.
  2. Thorbjörg Sóley Ingadóttir: 1 Faculty of Nursing, School of Health Sciences, University of Iceland, Reykjavik, Iceland.

Abstract

Recruitment, the process of accessing, screening, selecting and retaining participants for research remains a challenge. In a randomized controlled trial, partnership-based self-management intervention for patients who have chronic obstructive pulmonary disease (COPD) in its initial stages, and their families, a theoretical framework developed for patients with an advanced COPD and their families was modified and implemented in a primary care context. In contrast to recruitment to the original study where 4% decline participation, in this study 25% of the potential patients declined participation. Although participants were encouraged to bring a family member, only 25% of them did so. The main reason for not being accompanied by a family member was that patients did not want anybody accompany them. Those who had quit smoking were more often accompanied by a family member compared to those who smoked. Reviewing the literature, the most compelling explanations for non-participation are shame and self-blame due to smoking, and that potential participants may not have envisioned any benefits from participating since they might not have realized that they had COPD. An alternative recruitment process needs to embrace the situation that potential participants find themselves in and which takes account of the issues at stake.

Keywords

References

  1. Int J Chron Obstruct Pulmon Dis. 2015 Jun 08;10:1061-73 [PMID: 26089656]
  2. Scand J Caring Sci. 2011 Mar;25(1):100-7 [PMID: 20534028]
  3. J Clin Nurs. 2010 Oct;19(19-20):2795-805 [PMID: 20846229]
  4. J Clin Nurs. 2002 Sep;11(5):613-21 [PMID: 12201888]
  5. Prim Care Respir J. 2011 Sep;20(3):307-14, 1 p following 314 [PMID: 21509413]
  6. Qual Health Res. 2011 Jul;21(7):927-35 [PMID: 21429944]
  7. J Fam Nurs. 2007 Nov;13(4):443-60 [PMID: 18180469]
  8. Chron Respir Dis. 2011;8(2):89-99 [PMID: 21596892]
  9. Thorax. 2006 Dec;61(12):1043-7 [PMID: 17040932]
  10. NPJ Prim Care Respir Med. 2014 Aug 14;24:14036 [PMID: 25119845]
  11. Ont Health Technol Assess Ser. 2012;12(13):1-47 [PMID: 23074423]
  12. J Clin Nurs. 2018 Jan;27(1-2):57-64 [PMID: 28382766]
  13. BMC Fam Pract. 2015 Nov 04;16:164 [PMID: 26537703]
  14. Soc Sci Med. 2009 Jun;68(12):2215-22 [PMID: 19394741]
  15. Front Psychiatry. 2013 Oct 08;4:120 [PMID: 24115936]
  16. Prim Care Respir J. 2007 Aug;16(4):215-21 [PMID: 17625785]
  17. BMJ. 2012 Nov 28;345:e7642 [PMID: 23190905]
  18. ANS Adv Nurs Sci. 1999 Dec;22(2):62-73 [PMID: 10634188]
  19. J Psychosom Res. 2012 Jan;72(1):78-83 [PMID: 22200527]
  20. Int J Chron Obstruct Pulmon Dis. 2014 Feb 26;9:257-63 [PMID: 24600218]
  21. Laeknabladid. 2007 Jun;93(6):471-7 [PMID: 17541146]
  22. J Fam Nurs. 2010 Nov;16(4):355-77 [PMID: 21051754]
  23. J Health Psychol. 2010 Apr;15(3):456-66 [PMID: 20348366]
  24. Curr Opin Pulm Med. 2015 Mar;21(2):121-6 [PMID: 25575363]
  25. J Clin Nurs. 2013 Mar;22(5-6):621-37 [PMID: 23398312]
  26. BMJ. 2011 Jan 24;342:d142 [PMID: 21262897]
  27. Chron Respir Dis. 2012 Aug;9(3):163-74 [PMID: 22637746]
  28. Chron Respir Dis. 2016 Nov;13(4):337-343 [PMID: 27072019]
  29. Qual Health Res. 2011 Sep;21(9):1273-82 [PMID: 21474655]
  30. West J Nurs Res. 2011 Nov;33(7):916-32 [PMID: 20940446]
  31. J Adv Nurs. 2015 Nov;71(11):2634-49 [PMID: 26193907]
  32. J Adv Nurs. 2004 Aug;47(3):241-8; discussion 249-50 [PMID: 15238117]

MeSH Term

Aged
Cigarette Smoking
Family
Female
Humans
Male
Middle Aged
Patient Acceptance of Health Care
Patient Selection
Pulmonary Disease, Chronic Obstructive
Randomized Controlled Trials as Topic
Self Care
Self-Assessment
Shame
Tobacco Use Disorder

Word Cloud

Created with Highcharts 10.0.0patientsparticipantsfamiliesself-managementobstructivepulmonarydiseaseCOPDrecruitmentpotentialfamilymemberprocessrandomizedcontrolledtrialpartnership-basedchronicstagesstudyparticipation25%accompaniedsmokingshameRecruitmentaccessingscreeningselectingretainingresearchremainschallengeinterventioninitialtheoreticalframeworkdevelopedadvancedmodifiedimplementedprimarycarecontextcontrastoriginal4%declinedeclinedAlthoughencouragedbringmainreasonwantanybodyaccompanyquitoftencomparedsmokedReviewingliteraturecompellingexplanationsnon-participationself-blameduemayenvisionedbenefitsparticipatingsincemightrealizedalternativeneedsembracesituationfindtakesaccountissuesstakeReluctanceearlyparticipatetrial:searchexplanationChronic

Similar Articles

Cited By