The ruling relations of patient involvement in cardiac rehabilitation programs
https://doi.org/10.4081/qrmh.2021.9489
Accepted: 1 April 2021
Appendix: 0
All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.
Patient involvement has often been defined and examined on the basis of conceptual theoretical frameworks. This article explores patient involvement contextually and locally, in encounters between patients and healthcare professionals in cardiac rehabilitation in Denmark. With inspiration from institutional ethnography, the goal is to unpack what involvement actually implies in rehabilitation activities. The analysis provides micro-sociological insights into how patient involvement is constituted and institutionally conditioned and shows how textually mediated ruling relations regulate activities and interactions, shaping patient involvement in local practices. The analysis reveals how patient involvement primarily relates to healthcare professionals involving patients in health knowledge. It explores how national guidelines and local instructions for healthcare professionals frame understandings of patient needs and problems. The concluding discussion highlights how patients have limited opportunities to influence their own care process. It also points out how it is left to the individual healthcare professional to solve contradictions between institutionally defined tasks and the ambition of patient involvement.
Tritter JQ. Revolution or evolution: the challenges of conceptualizing patient and public involvement in a consumerist world. Health Expect 2009;12:275-87. DOI: https://doi.org/10.1111/j.1369-7625.2009.00564.x
Barnes M, Cotterell P. From margin to mainstream. In: Barnes M, Cotterell P, eds. Critical perspectives on user involvement. Bristol: Policy Press; 2012: pp. xv-xxvi.
Dent M, Pahor M. Patient involvement in Europe: a comparative framework. J Health Organ Manag 2015;29:546-55. DOI: https://doi.org/10.1108/JHOM-05-2015-0078
Olejaz M, Juul Nielsen A, Rudkjøbing A, et al. Denmark: health system review. Health Syst Transit 2012;14:1-192.
Mead N, Bower P. Patient-centredness: a conceptual framework and review of the empirical literature. Soc Sci Med 2000;51:1087-110. DOI: https://doi.org/10.1016/S0277-9536(00)00098-8
Fotaki M. Towards developing new partnerships in public services: users as consumers, citizens, and/or co-producers in health and social care in England and Sweden, Pub Admin 2011;89:933-55. DOI: https://doi.org/10.1111/j.1467-9299.2010.01879.x
Mockford C, Staniszewska S, Griffiths F, Herron-Marx S. The impact of patient and public involvement on UK NHS health care: a systematic review. Int J Qual Health C 2012;24:28-38. DOI: https://doi.org/10.1093/intqhc/mzr066
Vrangbæk K. Patient involvement in Danish health care. J Health Organ Manag 2015;29:611-24. DOI: https://doi.org/10.1108/JHOM-01-2015-0002
Bochel C, Bochel H, Somerville P, Worley C. Marginalized or enabled voices? ‘User participation’ in policy and practice. Soc Policy Society 2008;7:201-10. DOI: https://doi.org/10.1017/S1474746407004150
Pluut B. Differences that matter: developing critical insights into discourses of patient-centeredness. Med Health Care Phil 2016;19:501-15. DOI: https://doi.org/10.1007/s11019-016-9712-7
Barnes M, Cotterell P. User involvement in services. In: Barnes M, Cotterell P, eds. Critical perspectives on user involvement. Bristol: Policy Press; 2012: pp. 73-77. DOI: https://doi.org/10.1332/policypress/9781847427519.001.0001
Ortiz Halabi I, Scholtes B, Voz B, et al. “Patient participation” and related concepts: a scoping review on their dimensional composition. Patient Edu Couns 2020;103:5-14. DOI: https://doi.org/10.1016/j.pec.2019.08.001
Askheim OP, Christensen K, Fluge S, Guldvik I. User participation in Norwegian welfare context: an analysis of policy discourses. J Soc Policy 2017;46:583-601. DOI: https://doi.org/10.1017/S0047279416000817
Christensen K, Pilling D. User participation policies in Norway and England: the case of older people and social care. J Soc Policy 2019;48:43-61. DOI: https://doi.org/10.1017/S0047279418000272
Jacobsen CB, Pedersen VH, Albeck K. Patientinddragelse mellem ideal og virkelighed: En empirisk undersøgelse af fælles beslutningstagning og dagligdagens møder mellem patient og behandler [Patient involvement between ideal and reality: An empirical study of joint decision-making and everyday meetings between patient and therapist]. Sundhedsstyrelsen, Monitorering & Medicinsk Teknologivurdering and Dansk Sundhedsinstitut. Medicinsk Teknologivurdering – puljeprojekter 2008;8.
Knudsen M, Højlund H. Grænser for inddragelse: en analyse af inddragelsesidealer og beslutningsprogrammer på genoptræningsområdet [Limits of involvement: an analysis of involvement ideals and decision-making programmes in rehabilitation]. In: Kjær P, Reff A, eds. Ledelse gennem patienten: nye styringsformer i sundhedsvæsenet [Management via the Patient: New forms of leadership in health care]. Copenhagen: Handelshøjskolens Forlag; 2010: pp. 75-99.
Hsieh E, Bruscella J, Zanin A, Kramer E. ‘It’s not like you need to live 10 or 20 years’: challenges to patient-centered care in gynecologic oncologist-patient interactions. Qual Health Res 2016;26:1191-202. DOI: https://doi.org/10.1177/1049732315589095
Smith DE. Institutional Ethnography: A sociology for people. Lanham: Altamira Press. 2005.
Smith DE. Texts and the ontology of organizations and institutions. Studies Cults Orgs Socs 2001;7:159-98. DOI: https://doi.org/10.1080/10245280108523557
Zwisler AD, Shou L, Sørensen LV, eds. Hjerterehabilitering: Rationale, arbejdsmetode og erfaringer fra Bispebjerg Hospital [Cardiac Rehabilitation: Rationale, Working Methods and Experiences from Bispebjerg Hospital]. København: Hjerterehabiliteringen, Kardiologisk klinik Y, H:S Bispebjerg Hospital; 2003.
Danish Health Authority. Hjerterehabilitering: en medicinsk teknologivurdering, evidens fra litteraturen og DANREHAB-forsøget [Cardiac rehabilitation: a medical technology evaluation, evidence from the literature and the DANREHAB trial]. Medicinsk Teknologivurdering – puljeprojekter 2006;6. Available from: https://www.sst.dk/~/media/97BEC54E347646C6BAFEB31426261575.ashx
Janssen V, De Gutht V, Van Exel H, Maes S. A self-regulation lifestyle program for post-cardiac rehabilitation patients has long term effect on exercise adherence, J Behav Med 2014;37:308-21. DOI: https://doi.org/10.1007/s10865-012-9489-y
Tolmie EP, Lindsay GM, Belcher PR. Coronary artery bypass graft operation: patients’ experience of health and well-being over time, Eur J Cardiovasc Nur 2006; 5: 228-36 DOI: https://doi.org/10.1016/j.ejcnurse.2006.01.007
Rolley JX, Thompson DR. Cardiovascular disease: is it time to finally recognize it as a complex, chronic life-span illness? Eur J Cardiovasc Nur 2012;11:135-37. DOI: https://doi.org/10.1177/1474515111429664
Hansen TB. Organisational, economic and patient perspectives on exercise-based cardiac rehabilitation following heart valve surgery. PhD Dissertation. SDU University of Southern Denmark. 2016.
Knowledge Centre for Patient Involvement (ViBIS): Sundhedsprofessionelles forståelser af patientinddragelse – en kvalitativ undersøgelse [Healthcare professionals’ understandings of patient involvement: a qualitative study]. 2013. https://danskepatienter.dk/files/media/Publikationer%20-%20Egne/B_ViBIS/A_Rapporter%20og%20unders%C3%B8gelser/sundhedsproffesionelles_forstaaelse_kvalitativ.pdf
Kamp A, Dybbroe B. Struggles of Professionalism and Emotional Labour in Standardized Mental Health Care. NJWLS 2016;6:67-86. DOI: https://doi.org/10.19154/njwls.v6i1.4886
Gripsrud BH, Ramvi E, Ribers B. Couldn’t care less? A psychosocial analysis of contemporary cancer care policy as a case of borderline welfare, J Psychosoc Stud 2020;13:247–62. DOI: https://doi.org/10.1332/147867320X15985348674895
Danish Health Authority. Pakkeforløb for ustabil angina pectoris (UAP) og akut myokardieinfarkt uden ST-elevation (NSTEMI) [Patient care pathway for unstable angina pectoris (UAP) and acute myocardial infarction without ST elevation (NSTEMI)]. 2013. https://docplayer.dk/7268127-Pakkeforloeb-for-ustabil-angina-pectoris-uap-og-akut-myokardieinfarkt.html
Danish Health Authority. National klinisk retningslinje for hjerterehabilitering 2013 [National Clinical Guideline for Cardiac Rehabilitation 2013]. 2015. https://www.sst.dk/da/sundhed/kvalitet-og-retningslinjer/nationale-kliniske-retningslinjer/udgivelser/~/media/401919781C684EE9AAE544EB5E76847B.ashx
Arnetz JE, Winblad U, Arnetz BB, Höglund AT. Physicians’ and nurses’ perceptions of patient involvement in myocardial infarction care. Eur J Cardiovasc Nur 2008;7:113-20. DOI: https://doi.org/10.1016/j.ejcnurse.2007.05.005
Knowledge Centre for Patient Involvement (ViBIS): Læger og sygeplejerskers forståelse af patientinddragelse – en spørgeskemaundersøgelse blandt ansatte på hospitaler [Doctors’ and nurses’ understandings of patient involvement: a questionnaire for hospital staff]. 2014. https://www.regioner.dk/media/10285/laeger-og-sygeplejerskers-forstaaelse-af-patientinddragelse.pdf
Légaré F, Ratté S, Gravel K, Graham ID. Barriers and facilitators to implementing shared decision-making in clinical practice: update of a systematic review of health professionals’ perceptions. Patient Educ Couns 2008;73:526-35. DOI: https://doi.org/10.1016/j.pec.2008.07.018
Angel S, Frederiksen KN. Challenges in achieving patient participation: a review of how patient participation is addressed in empirical studies. Int J Nurs Stud 2015;52:1525-38. DOI: https://doi.org/10.1016/j.ijnurstu.2015.04.008
Jønsson AR, Baker VH, Jacobsen CB, Pedersen LH. Brugerinddragelse: forhandlinger af autoritet, relation og viden [User involvement: negotiating authority, relations and knowledge]. Tidsskr Forsk Sygdom Samf 2015;22:5-17. DOI: https://doi.org/10.7146/tfss.v0i22.20817
PAGEPress has chosen to apply the Creative Commons Attribution NonCommercial 4.0 International License (CC BY-NC 4.0) to all manuscripts to be published.
Downloads
Citations
