Usefulness and Relevance of an eHealth Tool in Supporting the Self-Management of Chronic Obstructive Pulmonary Disease: Explorative Qualitative Study of a Cocreative Process

Malin Tistad, Sara Lundell, Maria Wiklund, André Nyberg, Åsa Holmner, Karin Wadell, Malin Tistad, Sara Lundell, Maria Wiklund, André Nyberg, Åsa Holmner, Karin Wadell

Abstract

Background: New strategies are urgently needed to support self-management for people with chronic obstructive pulmonary disease (COPD) in primary care. The use of electronic health (eHealth) solutions is promising. However, there is a lack of knowledge about how such eHealth tools should be designed in order to be perceived as relevant and useful and meet the needs and expectations of the health professionals as well as people with COPD and their relatives.

Objective: The objective of this study was to explore the aspects of an eHealth tool design and content that make it relevant and useful for supporting COPD-related self-management strategies from the perspective of health care professionals, people with COPD and their relatives, and external researchers.

Methods: Data were collected during the development of an eHealth tool. A cocreation process was carried out with participants from two primary care units in northern Sweden and external researchers. Individual interviews were performed with health care professionals (n=13) as well as people with COPD (n=6) and their relatives (n=2), and focus group discussions (n=9) were held with all groups of participants. Data were analyzed using qualitative content analysis.

Results: The overarching theme, reinforcing existing support structures, reflects participant views that the eHealth tool needs to be directly applicable and create a sense of commitment in users. Moreover, participants felt that the tool needs to fit with existing routines and contexts and preferably should not challenge existing hierarchies between health care professionals and people with COPD. Important content for health care professionals and people with COPD included knowledge about self-management strategies. Videos were regarded as the most effective method for communicating such knowledge.

Conclusions: The cocreation in the development process enables participant perspectives and priorities to be built into the eHealth tool. This is assumed to contribute to a tool that is useful and relevant and, therefore, adopted into clinical practice and everyday life. Findings from this study can inform the development of eHealth tools for people with COPD in other contexts, as well as the development of eHealth tools for self-management support of other chronic diseases.

Keywords: COPD; cocreation; eHealth; primary care, chronic disease; self-management.

Conflict of interest statement

Conflicts of Interest: None declared.

©Malin Tistad, Sara Lundell, Maria Wiklund, André Nyberg, Åsa Holmner, Karin Wadell. Originally published in JMIR Human Factors (http://humanfactors.jmir.org), 26.10.2018.

Figures

Figure 1
Figure 1
Structure of the development process of the eHealth tool. COPD: chronic obstructive pulmonary disease.

References

    1. Spruit MA, Singh SJ, Garvey C, ZuWallack R, Nici L, Rochester C, Hill K, Holland AE, Lareau SC, Man WD, Pitta F, Sewell L, Raskin J, Bourbeau J, Crouch R, Franssen FME, Casaburi R, Vercoulen JH, Vogiatzis I, Gosselink R, Clini EM, Effing TW, Maltais F, van DPJ, Troosters T, Janssen DJA, Collins E, Garcia-Aymerich J, Brooks D, Fahy BF, Puhan MA, Hoogendoorn M, Garrod R, Schols AMWJ, Carlin B, Benzo R, Meek P, Morgan M, Rutten-van MMPMH, Ries AL, Make B, Goldstein RS, Dowson CA, Brozek JL, Donner CF, Wouters EFM, ATS/ EFOPR. An official American Thoracic Society/European Respiratory Society statement: key concepts and advances in pulmonary rehabilitation. Am J Respir Crit Care Med. 2013 Oct 15;188(8):e13–64. doi: 10.1164/rccm.201309-1634ST.
    1. Wehrmeister FC, Knorst M, Jardim JR, Macedo EC, Noal RB, Martínez-Mesa J, González DA, Dumith SC, Maia MDF, Hallal PC, Menezes AMB. Pulmonary rehabilitation programs for patients with COPD. J Bras Pneumol. 2011;37(4):544–55.
    1. McCarthy B, Casey D, Devane D, Murphy K, Murphy E, Lacasse Y. Pulmonary rehabilitation for chronic obstructive pulmonary disease. Cochrane Database Syst Rev. 2015 Feb 23;(2):CD003793. doi: 10.1002/14651858.CD003793.pub3.
    1. Wadell K, Webb KA, Preston ME, Amornputtisathaporn N, Samis L, Patelli J, Guenette JA, O'Donnell DE. Impact of pulmonary rehabilitation on the major dimensions of dyspnea in COPD. COPD. 2013 Aug;10(4):425–35. doi: 10.3109/15412555.2012.758696.
    1. Griffiths TL, Phillips CJ, Davies S, Burr ML, Campbell IA. Cost effectiveness of an outpatient multidisciplinary pulmonary rehabilitation programme. Thorax. 2001 Oct;56(10):779–84.
    1. Wadell K, Janaudis FT, Arne M, Lisspers K, Ställberg B, Emtner M. Hospital-based pulmonary rehabilitation in patients with COPD in Sweden--a national survey. Respir Med. 2013 Aug;107(8):1195–200. doi: 10.1016/j.rmed.2013.04.019.
    1. Yohannes AM, Connolly MJ. Pulmonary rehabilitation programmes in the UK: a national representative survey. Clin Rehabil. 2004 Jun;18(4):444–9. doi: 10.1191/0269215504cr736oa.
    1. Brooks D, Sottana R, Bell B, Hanna M, Laframboise L, Selvanayagarajah S, Goldstein R. Characterization of pulmonary rehabilitation programs in Canada in 2005. Can Respir J. 2007 Mar;14(2):87–92.
    1. Levack WMM, Weatherall M, Reeve JC, Mans C, Mauro A. Uptake of pulmonary rehabilitation in New Zealand by people with chronic obstructive pulmonary disease in 2009. N Z Med J. 2012 Jan 20;125(1348):23–33.
    1. Sehl J, O'Doherty J, O'Connor R, O'Sullivan B, O'Regan A. Adherence to COPD management guidelines in general practice? A review of the literature. Ir J Med Sci. 2017 Jul 22; doi: 10.1007/s11845-017-1651-7.
    1. Shaw T, McGregor D, Brunner M, Keep M, Janssen A, Barnet S. What is eHealth (6)? Development of a Conceptual Model for eHealth: Qualitative Study with Key Informants. J Med Internet Res. 2017 Oct 24;19(10):e324. doi: 10.2196/jmir.8106.
    1. Lundell S, Holmner A, Rehn B, Nyberg A, Wadell K. Telehealthcare in COPD: a systematic review and meta-analysis on physical outcomes and dyspnea. Respir Med. 2015 Jan;109(1):11–26. doi: 10.1016/j.rmed.2014.10.008.
    1. Hanlon P, Daines L, Campbell C, McKinstry B, Weller D, Pinnock H. Telehealth Interventions to Support Self-Management of Long-Term Conditions: A Systematic Metareview of Diabetes, Heart Failure, Asthma, Chronic Obstructive Pulmonary Disease, and Cancer. J Med Internet Res. 2017 May 17;19(5):e172. doi: 10.2196/jmir.6688.
    1. Talboom-Kamp EP, Verdijk NA, Kasteleyn MJ, Harmans LM, Talboom IJ, Looijmans-van den Akker I, van Geloven N, Numans ME, Chavannes NH. The Effect of Integration of Self-Management Web Platforms on Health Status in Chronic Obstructive Pulmonary Disease Management in Primary Care (e-Vita Study): Interrupted Time Series Design. J Med Internet Res. 2017 Aug 16;19(8):e291. doi: 10.2196/jmir.8262.
    1. Farmer A, Williams V, Velardo C, Shah SA, Yu L, Rutter H, Jones L, Williams N, Heneghan C, Price J, Hardinge M, Tarassenko L. Self-Management Support Using a Digital Health System Compared With Usual Care for Chronic Obstructive Pulmonary Disease: Randomized Controlled Trial. J Med Internet Res. 2017 May 03;19(5):e144. doi: 10.2196/jmir.7116.
    1. Brewster L, Mountain G, Wessels B, Kelly C, Hawley M. Factors affecting front line staff acceptance of telehealth technologies: a mixed-method systematic review. J Adv Nurs. 2014 Jan;70(1):21–33. doi: 10.1111/jan.12196.
    1. Thies K, Anderson D, Cramer B. Lack of Adoption of a Mobile App to Support Patient Self-Management of Diabetes and Hypertension in a Federally Qualified Health Center: Interview Analysis of Staff and Patients in a Failed Randomized Trial. JMIR Hum Factors. 2017 Oct 03;4(4):e24. doi: 10.2196/humanfactors.7709.
    1. Flottorp SA, Oxman AD, Krause J, Musila NR, Wensing M, Godycki-Cwirko M, Baker R, Eccles MP. A checklist for identifying determinants of practice: a systematic review and synthesis of frameworks and taxonomies of factors that prevent or enable improvements in healthcare professional practice. Implement Sci. 2013 Mar 23;8:35. doi: 10.1186/1748-5908-8-35.
    1. Kujala S. User involvement: A review of the benefits and challenges. Behaviour & Information Technology. 2003 Jan;22(1):1–16. doi: 10.1080/01449290301782.
    1. Kayser L, Kushniruk A, Osborne RH, Norgaard O, Turner P. Enhancing the Effectiveness of Consumer-Focused Health Information Technology Systems Through eHealth Literacy: A Framework for Understanding Users' Needs. JMIR Hum Factors. 2015 May 20;2(1):e9. doi: 10.2196/humanfactors.3696.
    1. Vorrink S, Huisman C, Kort H, Troosters T, Lammers J. Perceptions of Patients With Chronic Obstructive Pulmonary Disease and Their Physiotherapists Regarding the Use of an eHealth Intervention. JMIR Hum Factors. 2017 Sep 19;4(3):e20. doi: 10.2196/humanfactors.7196.
    1. Nyberg A, Wadell K, Lindgren H, Tistad M. Internet-based support for self-management strategies for people with COPD-protocol for a controlled pragmatic pilot trial of effectiveness and a process evaluation in primary healthcare. BMJ Open. 2017 Aug 01;7(7):e016851. doi: 10.1136/bmjopen-2017-016851.
    1. Lundell S, Tistad M, Rehn B, Wiklund M, Holmner A, Wadell K. Building COPD care on shaky ground: a mixed methods study from Swedish primary care professional perspective. BMC Health Serv Res. 2017 Dec 10;17(1):467. doi: 10.1186/s12913-017-2393-y.
    1. Post-och telestyrelsen [The Swedish Post and Telecom Authority] Tillgång till telefoni och grundläggande internet PTS uppföljningsrapport 2017 [Access to telephone and basic internet PTS Follow-up Report 2017] .
    1. Svenskarna och internet Undersökning om svenskarnas internetvanor. 2017. Internetstiftelsen i Sverige [The Internet Foundation In Sweden] .
    1. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004 Feb;24(2):105–12. doi: 10.1016/j.nedt.2003.10.001.
    1. ICT Services and System Development and Division of Epidemiology and Global Health (2015) Umeå, Sweden: University of Umeå; OpenCode 4.03
    1. Socialstyrelsen. [2018-09-26]. Nationella riktlinjer för vård vid astma och KOL .
    1. Johnston KN, Young M, Grimmer KA, Antic R, Frith PA. Barriers to, and facilitators for, referral to pulmonary rehabilitation in COPD patients from the perspective of Australian general practitioners: a qualitative study. Prim Care Respir J. 2013 Sep;22(3):319–24. doi: 10.4104/pcrj.2013.00062. doi: 10.4104/pcrj.2013.00062.
    1. Sandelowsky H, Natalishvili N, Krakau I, Modin S, Ställberg B, Nager A. COPD management by Swedish general practitioners - baseline results of the PRIMAIR study. Scand J Prim Health Care. 2018 Mar;36(1):5–13. doi: 10.1080/02813432.2018.1426148.
    1. Young HML, Apps LD, Harrison SL, Johnson-Warrington VL, Hudson N, Singh SJ. Important, misunderstood, and challenging: a qualitative study of nurses' and allied health professionals' perceptions of implementing self-management for patients with COPD. Int J Chron Obstruct Pulmon Dis. 2015;10:1043–52. doi: 10.2147/COPD.S78670. doi: 10.2147/COPD.S78670.
    1. Harvey G, Kitson A. PARIHS revisited: from heuristic to integrated framework for the successful implementation of knowledge into practice. Implement Sci. 2016 Mar 10;11:33. doi: 10.1186/s13012-016-0398-2.
    1. Graham ID, Logan J. Innovations in knowledge transfer and continuity of care. Can J Nurs Res. 2004 Jun;36(2):89–103.
    1. May C, Finch T. Implementing, Embedding, and Integrating Practices: An Outline of Normalization Process Theory. Sociology. 2009 Jun 15;43(3):535–554. doi: 10.1177/0038038509103208.
    1. Sveriges kommuner och landsting 2015 [Swedish Association of Local Authorities and Regions] Överenskommelse mellan staten och Sveriges kommuner och landsting om tillgänglighet och samordning för en mer personcentrerad vård 2015 [Agreement between the state and Sweden's municipalities and county council on accessibility and coordination for a more person-centered care 2015] .
    1. Institute of Medicine . Crossing the Quality Chasm: A New Health System for the 21st Century. Washington (DC): Institute of Medicine (US) Committee on Quality of Health Care in America; 2001.
    1. Constand MK, MacDermid JC, Dal BV, Law M. Scoping review of patient-centered care approaches in healthcare. BMC Health Serv Res. 2014 Jun 19;14:271. doi: 10.1186/1472-6963-14-271.
    1. Ekman I, Swedberg K, Taft C, Lindseth A, Norberg A, Brink E, Carlsson J, Dahlin-Ivanoff S, Johansson I, Kjellgren K, Lidén E, Öhlén J, Olsson L, Rosén H, Rydmark M, Sunnerhagen KS. Person-centered care--ready for prime time. Eur J Cardiovasc Nurs. 2011 Dec;10(4):248–51. doi: 10.1016/j.ejcnurse.2011.06.008.
    1. Castro EM, Van Regenmortel T, Vanhaecht K, Sermeus W, Van Hecke A. Patient empowerment, patient participation and patient-centeredness in hospital care: A concept analysis based on a literature review. Patient Educ Couns. 2016 Dec;99(12):1923–1939. doi: 10.1016/j.pec.2016.07.026.
    1. Myndigheten för vårdanalys VIP i vården? Om utmaningar i vården av personer med kronisk sjukdom. 2014. [The Swedish Agency for Health and Care Services Analysis. VIP in care? - On challenges in the care of people with chronic disease] .
    1. Longtin Y, Sax H, Leape LL, Sheridan SE, Donaldson L, Pittet D. Patient participation: current knowledge and applicability to patient safety. Mayo Clin Proc. 2010 Jan;85(1):53–62. doi: 10.4065/mcp.2009.0248.
    1. Stoilkova-Hartmann A, Janssen DJA, Franssen FME, Spruit MA, Wouters EFM. Attitudes of healthcare professionals providing pulmonary rehabilitation toward partnership in care. Heart Lung. 2015;44(4):347–52. doi: 10.1016/j.hrtlng.2015.05.003.
    1. Khan A, Dickens AP, Adab P, Jordan RE. Self-management behaviour and support among primary care COPD patients: cross-sectional analysis of data from the Birmingham Chronic Obstructive Pulmonary Disease Cohort. NPJ Prim Care Respir Med. 2017 Jul 20;27(1):46. doi: 10.1038/s41533-017-0046-6.
    1. Nakken N, Janssen DJA, van den Bogaart EHA, Muris JWM, Vercoulen JH, Custers FL, Bootsma GP, Gronenschild MHM, Wouters EFM, Spruit MA. Knowledge gaps in patients with COPD and their proxies. BMC Pulm Med. 2017 Oct 30;17(1):136. doi: 10.1186/s12890-017-0481-8.
    1. Lindqvist G, Hallberg LR. 'Feelings of guilt due to self-inflicted disease': a grounded theory of suffering from chronic obstructive pulmonary disease (COPD) J Health Psychol. 2010 Apr;15(3):456–66. doi: 10.1177/1359105309353646.
    1. Arne M, Emtner M, Janson S, Wilde-Larsson B. COPD patients perspectives at the time of diagnosis: a qualitative study. Prim Care Respir J. 2007 Aug;16(4):215–21. doi: 10.3132/pcrj.2007.00033. doi: 10.3132/pcrj.2007.00033.
    1. Ali L, Fors A, Ekman I. Need of support in people with chronic obstructive pulmonary disease. J Clin Nurs. 2018 Mar;27(5-6):e1089–e1096. doi: 10.1111/jocn.14170.
    1. Harrison SL, Robertson N, Apps L, Morgan MDL, Singh SJ. "We are not worthy"--understanding why patients decline pulmonary rehabilitation following an acute exacerbation of COPD. Disabil Rehabil. 2015;37(9):750–6. doi: 10.3109/09638288.2014.939770.
    1. Bartlett YK, Webb TL, Hawley MS. Using Persuasive Technology to Increase Physical Activity in People With Chronic Obstructive Pulmonary Disease by Encouraging Regular Walking: A Mixed-Methods Study Exploring Opinions and Preferences. J Med Internet Res. 2017 Apr 20;19(4):e124. doi: 10.2196/jmir.6616.
    1. Talboom-Kamp EP, Verdijk NA, Kasteleyn MJ, Harmans LM, Talboom IJ, Numans ME, Chavannes NH. High Level of Integration in Integrated Disease Management Leads to Higher Usage in the e-Vita Study: Self-Management of Chronic Obstructive Pulmonary Disease With Web-Based Platforms in a Parallel Cohort Design. J Med Internet Res. 2017 May 31;19(5):e185. doi: 10.2196/jmir.7037.
    1. Lorig KR, Holman H. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med. 2003 Aug;26(1):1–7.

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