Persons with chronic obstructive pulmonary disease (COPD) require complex follow-up by healthcare professionals (HCPs) and may experience several health literacy (HL) needs. This study aimed to explore such needs in people with COPD and the HCPs who care for them.
Methods
From October 2016 to August 2017 a qualitative study with four focus groups (FG) were performed in people with COPD (n = 14) and three in multidisciplinary HCPs (n = 21). An inductive thematic analysis was used to investigate HL needs.
Results
Four HL needs emerged: 1) strengthening the feeling of security; 2) combating the burden of insufficient knowledge on COPD and lack of informational flow; 3) supporting motivation for endurance and self-management; and 4) strengthening dignity.
Discussion
This study highlights a gap between people with COPD who express important HL needs and HCPs’ capabilities to care for these needs. For HCPs to increase HL in such cases, HCPs need to improve their own HL. It is essential to find solutions on how to improve HL in HCPs who care for people with COPD and to increase the availability of interventions that increase HL in COPD. Education programs, health organizations, and governments should be aware of HL needs in such situations.
GOLD. Global Initiative for Chronic Obstructive Lung Disease. Global strategy for the diagnosis, managment, and prevention of chronic obstructive pulmonary disease, www. goldcopd. org (2020, accessed 5 June 2020).
2.
ManelMMahaDThourayaAAliMMohamedD, et al.
Factors determining the quality of life of patients with COPD a review. Clin Pulmon Med2017;
24: 227–231.
RussellSOgunbayoOJNewhamJJ, et al.
Qualitative systematic review of barriers and facilitators to self-management of chronic obstructive pulmonary disease: views of patients and healthcare professionals. NPJ Prim Care Respir Med2018;
28: 2–01.
5.
KayyaliROdehBFrerichsI, et al.
COPD care delivery pathways in five European Union countries: mapping and health care professionals' perceptions. Int J Chron Obstruct Pulmon Dis2016;
11: 2831–2838.
6.
RobertsNJGhiassiRPartridgeMR.Health literacy in COPD. Int J Chron Obstruct Pulmon Dis2008;
3: 499–507.
7.
ClariMIvzikuDCasciaroR, et al.
The unmet needs of people with chronic obstructive pulmonary disease: a systematic review of qualitative findings. Copd2018;
15: 79–88.
8.
HutchinsonABarclay-KlingleNGalvinK, et al.
Living with breathlessness: a systematic review and qualitative synthesis. Eur Respir J2018;
51: 1701477.
9.
AmbrosinoNBertellaE.Lifestyle interventions in prevention and comprehensive management of COPD. Breathe (Sheff)2018;
14: 186–194.
10.
RaymondBLuckettTJohnsonM, et al.
Low-intensity educational interventions supporting self-management to improve outcomes related to chronic breathlessness: a systematic review. Npj Prim Care Respir Med2019;
29: 41.
KaleMSFedermanADKrauskopfK, et al.
The association of health literacy with illness and medication beliefs among patients with chronic obstructive pulmonary disease. PLoS One2015;
10: e0123937.
13.
Puente-MaestuLCalleMRodriguez-HermosaJL, et al.
Health literacy and health outcomes in chronic obstructive pulmonary disease. Respir Med2016;
115: 78–82.
14.
SadeghiSBrooksDGoldsteinRS.Patients' and providers' perceptions of the impact of health literacy on communication in pulmonary rehabilitation. Chron Respir Dis2013;
10: 65–76.
15.
BatterhamRWBuchbinderRBeauchampA, et al.
The OPtimising HEalth LIterAcy (ophelia) process: study protocol for using health literacy profiling and community engagement to create and implement health reform. BMC Public Health2014;
14: 694.
16.
BeauchampABatterhamRWDodsonS, et al.
Systematic development and implementation of interventions to OPtimise health literacy and access (ophelia). BMC Public Health2017;
17: 230–203.
17.
KingNBrooksJHorrocksC.Interviews in qualitative research. 2nd ed.London:
Sage, 2019.
18.
TongASainsburyPCraigJ.Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Quality Health Care2007;
19: 349–357.
19.
DislerRTGreenALuckettT, et al.
Experience of advanced chronic obstructive pulmonary disease: meta-synthesis of qualitative research. J Pain Symptom Manage2014; 48(6): 1182-1199 DOI: S0885-3924(14)00225-5
20.
BraunVClarkeV.Using thematic analysis in psychology. Qual Res Psychol2006;
3: 77–101.
21.
BorgeCRHagenKBMengshoelAM, et al.
Effects of controlled breathing exercises and respiratory muscle training in people with chronic obstructive pulmonary disease: results from evaluating the quality of evidence in systematic reviews. BMC Pulm Med2014;
14: 184.
22.
BorgeCRMengshoelAMOmenaasE, et al.
Effects of guided deep breathing on breathlessness and the breathing pattern in chronic obstructive pulmonary disease: a double-blind randomized control study. Patient Educ Couns2015;
98: 182–190.
23.
GardenerACEwingGKuhnI, et al.
Support needs of patients with COPD: a systematic literature search and narrative review. Int J Chron Obstruct Pulmon Dis2018;
13: 1021–1035.
24.
LeineMWahlAKBorgeCR, et al.
Feeling safe and motivated to achieve better health: experiences with a partnership-based nursing practice programme for in-home patients with chronic obstructive pulmonary disease. J Clin Nurs2017;
26: 2755–2764.
25.
HynninenMJBjerkeNPallesenS, et al.
A randomized controlled trial of cognitive behavioral therapy for anxiety and depression in COPD. Respir Med2010;
104: 986–994.
VitaccaMMontiniACominiL.How will telemedicine change clinical practice in chronic obstructive pulmonary disease?Ther Adv Respir Dis2018;
12: 1753465818754778–1753465818754702.
28.
JordanREMajothiSHeneghanNR, et al.
Supported self-management for patients with moderate to severe chronic obstructive pulmonary disease (COPD): an evidence synthesis and economic analysis. Health Technol Assess2015;
19: 1–516.
29.
NissenLLindhardtT.A qualitative study of COPD-patients' experience of a telemedicine intervention. Int J Med Inform2017;
107: 11–17.
30.
CornettS.Assessing and addressing health literacy. Online J Issues Nurs2009;
14(3), Manuscript 2.
31.
PoureslamiIShumJGoldsteinR, et al.; Canadian Airways Health Literacy Study Group.
Asthma and COPD patients’ perceived link between health literacy core domains and self-management of their condition. Patient Educ Couns2020;
103: 1415–1421.
32.
BurgessTYoungMCrawfordGB, et al.
Best-practice care for people with advanced chronic obstructive pulmonary disease: the potential role of a chronic obstructive pulmonary disease care co-ordinator. Aust Health Rev2013;
37: 474–481.
33.
SandelowskyHHylanderIKrakauI, et al.
Time pressured deprioritization of COPD in primary care: a qualitative study. Scand J Prim Health Care2016;
34: 55–65.
34.
BerlandABentsenSB.Patients with chronic obstructive pulmonary disease in safe hands: an education programme for nurses in primary care in Norway. Nurse Educ Pract2015;
15: 271–276.
35.
Ha DinhTTBonnerAClarkR, et al.
The effectiveness of the teach-back method on adherence and self-management in health education for people with chronic disease: a systematic review. JBI Datab Syst Rev Implement Rep2016;
14: 210–247.
36.
WortzKCadeAMenardJR, et al.
A qualitative study of patients' goals and expectations for self-management of COPD. Prim Care Respir J2012;
21: 384–391.
37.
LundahlBMoleniTBurkeBL, et al.
Motivational interviewing in medical care settings: a systematic review and meta-analysis of randomized controlled trials. Patient Educ Couns2013;
93: 157–168.
38.
MillerWRRollnickS.Motivational interviewing: helping people change. 3rd ed.New York:
The Guilford Press, 2019.
39.
BenzoRVickersKNovotnyPJ, et al.
Health coaching and chronic obstructive pulmonary disease rehospitalization. A randomized study. Am J Respir Crit Care Med2016;
194: 672–680.
ElwynGFroschDThomsonR, et al.
Shared decision making: a model for clinical practice. J Gen Intern Med2012;
27: 1361–1367.
42.
DurandMACarpenterLDolanH, et al.
Do interventions designed to support shared decision-making reduce health inequalities? A systematic review and Meta-analysis. PLoS One2014;
9: e94670.
43.
IshikawaHKiuchiT.Health literacy and health communication. Biopsychosoc Med2010;
4: 18–11.
44.
TrezonaADodsonSOsborneRH.Development of the organisational health literacy responsiveness (Org-HLR) self-assessment tool and process. BMC Health Serv Res2018;
18: 694–609.
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
