Open Access Open Access  Restricted Access Subscription or Fee Access

A Year in the Life of a Person Recently Diagnosed with Atrial Fibrillation: a Danish Single-Case Study.

Vibeke Hoegh, Elizabeth Cummings, Sam Riahi, Soeren Lundbye-Christensen, Kirsten Frederiksen, Charlotte Delmar

Abstract


Healthcare services target delivery of a connected patient journey as an indicator of a high quality of care, but knowledge of the patients’ experience is sparse. This case study explores the lived experience of the quality of life and perception of health during the first year of the journey of a person recently diagnosed with atrial fibrillation. Data sources include field notes, transcripts, medical records, letters, and scores from standardized questionnaires. A phenomenologically inspired approach for qualitative data analysis and a descriptive approach for discovering exceptional changes in scores from questionnaires are used. The patient journey in the study consists of; 38 visits to general practice, five visits to the outpatient clinic, and two radio frequency ablations at hospital. Four central themes; balancing responsibilities, navigating the system, adjusting to the situation, and recognizing bodily reactions, are elaborated. In conclusion, hope for a better future is evident throughout the journey. Difficulties of balancing responsibility, conflicting information and lack of support and connection between general practice and the hospital result in putting the participant’s dignity at stake. Despite two ablations the participant is affected in his daily life and family life due to physical limitations. Along the study adjustment to the situation is seen, and his new status as grandfather is surprisingly seen to facilitate this adjustment.

 


Keywords


patient journey; lived experience; patient reported outcomes; quality of life; health-related quality of life; health status; atrial fibrillation; phenomenological approach; case study

Full Text:

PDF

References


. Region Nordjylland [Northern Region of Denmark]. Handleplan 2015 [Action Plan 2015]. Northern Region, Denmark, 2015.

. OECD. Improving value in healthcare measuring quality. Paris : Organisation for Economic Co-operation and Development (OECD), Paris, 2010.

. Academy Health. Strategic Plan 2015-2019, 2015.

. WHO. Quality of care - A process for making strategic choises in heatlh systems - World Health Organization, Geneva, 2006

Mainz J, Bartels P, Bek T, Pedersen KM, Krøll V, Rhode P, editors. Kvalitetsudvikling i praksis [Quality development in practice] [Danish]. Kbh.: Munksgaard Danmark; 2011.

Rein A. Navigating Healthcare: Why It’s So Hard and What Can Be Done to Make It Easier for the Average Consumer 2007.

Berti D, Hendriks JML, Brandes A, Deaton C, Crijns HJGM, Camm a J, Hindricks G, Moons P, Heidbuchel H. A proposal for interdisciplinary, nurse-coordinated atrial fibrillation expert programmes as a way to structure daily practice. Eur Heart J 2013;34:2725–30. doi:10.1093/eurheartj/eht096.

Schumacher K, Meleis A. Transitions : A Central Concept in Nursing. IMAGE J Nurs Scholarsh 1994;26:119–27.

Henderson V. Basic principles of nursing care. Geneva Switzerland: International Council of Nurses; 1997.

Martinsen B, Dreyer P. Dependence on care experienced by people living with Duchenne muscular dystrophy and spinal cord injury. J Neurosci Nurs 2012;44:82–90. doi:10.1097/JNN.0b013e3182477a62.

Delmar C. The interplay between autonomy and dignity: summarizing patients voices. Med Heal Philos 2013;16:975–81. doi:10.1007/s11019-012-9416-6.

McCabe PJ, Rhudy LM, DeVon H a. Patients’ experiences from symptom onset to initial treatment for atrial fibrillation. J Clin Nurs 2015;24:786–96. doi:10.1111/jocn.12708.

Rahman F, Kwan GF, Benjamin EJ. Global epidemiology of atrial fibrillation. Nat Rev Cardiol 2014;11:639–54. doi:10.1038/nrcardio.2014.118.

Camm AJ, Kirchhof P, Lip GYH, Schotten U, Savelieva I, Ernst S, Van Gelder IC, Al-Attar N, Hindricks G, Prendergast B, et al. Guidelines for the management of atrial fibrillation: the Task Force for the Management of Atrial Fibrillation of the European Society of Cardiology (ESC). Eur Heart J 2010;31:2369–429. doi:10.1093/eurheartj/ehq278.

Fuster V, Rydén LE, Cannom DS, Crijns HJ, Curtis AB, Ellenbogen K a, Halperin JL, Le Heuzey J-Y, Kay GN, Lowe JE, et al. ACC/AHA/ESC 2006 Guidelines for the Management of Patients with Atrial Fibrillation: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines and the European Society of Cardiology Committee for Practice . Circulation 2006;114:e257–354. doi:10.1161/CIRCULATIONAHA.106.177292.

Heidbuchel H, Verhamme P, Alings M, Antz M, Hacke W, Oldgren J, Sinnaeve P, Camm a J, Kirchhof P. European Heart Rhythm Association Practical Guide on the use of new oral anticoagulants in patients with non-valvular atrial fibrillation. Europace 2013;15:625–51. doi:10.1093/europace/eut083.

Radwin LE, Alster K. Individualized nursing care: an empirically generated definition. Int Nurs Rev 2002;49:54–63. doi:10.1046/j.1466-7657.2002.00101.x.

Radwin LE. ’ Knowing the patient ': a review of research on an emerging concept 1996:1142–6.

Kirchhof P, Breithardt G, Aliot E, Al Khatib S, Apostolakis S, Auricchio A, Bailleul C, Bax J, Benninger G, Blomstrom-Lundqvist C, et al. Personalized management of atrial fibrillation: Proceedings from the fourth Atrial Fibrillation competence NETwork/European Heart Rhythm Association consensus conference. Europace 2013;15:1540–56. doi:10.1093/europace/eut232.

McCabe PJ, Schumacher K, Barnason S a. Living with atrial fibrillation: a qualitative study. J Cardiovasc Nurs 2011;26:336–44.

Thrall G, Lane D, Carroll D, Lip GYH. Quality of life in patients with atrial fibrillation: a systematic review. Am J Med 2006;119:448.e1–448.e19. doi:10.1016/j.amjmed.2005.10.057.

Aliot E, Botto GL, Crijns HJ, Kirchhof P. Quality of life in patients with atrial fibrillation: how to assess it and how to improve it. Europace 2014;Jun 16:787–96. doi:10.1093/europace/eut369.

Høgh V, Delmar C, Riahi S, Frederiksen K. Quality of Life - Exemplified through Patients Living with Atrial Fibrillation. J Nurs Care 2014;03. doi:10.4172/2167-1168.1000150.

World Health Organisation. WHOQOL Measuring Quality of Life. Div Ment Helath Prev Subst Abus 1997. http://www.who.int/mental_health/media/68.pdf.

Hoegh V, Lundbye-Christensen S, Delmar C, Frederiksen K, Riahi S, Overvad K. Association between the diagnosis of atrial fibrillation and aspects of health status: a Danish cross-sectional study. Scand J Caring Sci 2015. doi:10.1111/scs.12272.

Delmar C, Jacobsen C, Lisbeth F, Pedersen B. The existential significance of social support : patients ’ experiences after MI 2012:83–90.

McCabe PJ. Psychological distress in patients diagnosed with atrial fibrillation: the state of the science. J Cardiovasc Nurs 2010;25:40–51.

Yin R. Case study research : Design and Methods. 5th ed. SAGE Publication Inc.; 2014.

Fetters MD, Curry L a, Creswell JW. Achieving integration in mixed methods designs-principles and practices. Health Serv Res 2013;48:2134–56. doi:10.1111/1475-6773.12117.

Delmar C. ”Generalizability” as Recognition: Reflections on a Foundational Problem in Qualitative Research. Qual Stud 2010;1:115–28.

Løgstrup KE. Den etiske fordring [The ethical demand] [Danish]. 11th edn. Copenhagen, Denmark.: 1986.

Løgstrup KE. The ethical demand. Philadelphia: Fortress Press; 1971.

Flyvbjerg B. Making social science matter why social inquiry fails and how it can succeed again 2001.

Feinberg WM, Blackshear JL, Kronmal R, Hart RG. Prevalence, Age Distribution, and Gender of Patients With Atrial Fibrillation - Analysis and Implications. Arch Intern Med 1995;155.

Rich MW. Epidemiology of atrial fibrillation. J Interv Card Electrophysiol 2009;25:3–8. doi:10.1007/s10840-008-9337-8.

Frost L. The diagnosis atrial fibrillation or flutter in the Danish National Registry of Patients : incidence, risk factors, and prognosis. 2009.

McCabe PJ, Barnason S a. Illness perceptions, coping strategies, and symptoms contribute to psychological distress in patients with recurrent symptomatic atrial fibrillation. J Cardiovasc Nurs 2012;27:431–44. doi:10.1097/JCN.0b013e31821e7ab1; 10.1097/JCN.0b013e31821e7ab1.

The World Mecical Association. WMA Declaration of Helsinki. Ethical principles for medical research involving human subjects. J Indian Med Assoc 2009;107:403–5.

Sygepleiernes Samarbeid i Norden, [Northern Nurses’ Federation]. Ethical guidelines for nursing research in the Nordic countries [Etiske retningslinier for sygeplejeforskning i Norden Etiske retningslinjer for sykepleieforskning i Norden Etiska riktlinjer för omvårdnadsforskning i Norden Hoitotyön tutkimuksen eettiset]. 2003.

Marcus GE. Ethnography in/of the World System: The Emergence of Multi-Sited Ethnography. Annu Rev Anthropol 1995;24:95–117. doi:10.1146/annurev.an.24.100195.000523.

Wind G. Negotiated interactive observation: Doing fieldwork in hospital settings. Anthropol Med 2008;15:79–89. doi:10.1080/13648470802127098.

Van Manen M. Phenomenology of practice : meaning-giving methods in phenomenological research and writing. Left Coast Press, Inc.; 2014.

Spertus J, Dorian P, Bubien R, Lewis S, Godejohn D, Reynolds M, Lakkireddy D, Wimmer A, Bhandari A, Burk C. Development and Validation of the Atrial Fibrillation Effect on QualiTy-of-life (AFEQT) Questionnaire in Patients with Atrial Fibrillation. Circ Electrophysiol 2011;4:15–25.

Badia X, Arribas F, Ormaetxe JM, Peinado R, de Los Terreros MS. Development of a questionnaire to measure health-related quality of life (HRQoL) in patients with atrial fibrillation (AF-QoL). Health Qual Life Outcomes 2007;5:37. doi:10.1186/1477-7525-5-37.

Arribas F, Ormaetxe JM, Peinado R, Perulero N, Ramirez P, Badia X. Validation of the AF-QoL, a disease-specific quality of life questionnaire for patients with atrial fibrillation. Europace 2010;12:364–70. doi:10.1093/europace/eup421.

Maruish ME (Ed). NEW SF36v2 User Guide, 3rd Edition. Lincoln, RI: QualityMetric Incorporated; 2011.

Bjoerner JB, Trab Damsgaard M, Watt T, Bech P, Rasmussen NK, Soendergaard Kristensen T, Modvig J, Thunedborg K. Dansk manual til SF-36: et spørgeskema om helbredsstatus [Danish manual for SF-36: a questionnaire on health status] [Danish]. [S.l.]: Lif; 1997.

Giorgi A. The theory, practice, and evaluation of the phenomenological method as a qualitative research procedure. J Phenomenol Psychol 1997;28:235–60.

Kvale S, Brinkmann S. InterViews : learning the craft of qualitative research interviewing. Los Angeles: Sage Publications; 2009.

Delmar C, Bøje T, Dylmer D, Forup L, Jacobsen C, Møller M, Sønder H, Pedersen BD. Independence / dependence – a contradictory relationship? Life with a chronic illness. Scand J Caring Sci 2006;20:261–8.

Løgstrup KE. Den etiske fordring [The ethical demand] [Danish]. vol. 3. gennems. [Kbh.]: Gyldendal; 2008.

Jacobson N. A taxonomy of dignity: a grounded theory study. BMC Int Health Hum Rights 2009;9:3. doi:10.1186/1472-698X-9-3.

Thiel GJMW Van, Delden JJM Van. The principle of respect for autonomy in the care of nursing home residents. Nurs Ethics 2001;8:419–31.

Delmar C. Tillid & magt - en moralsk udfordring [Confidence and Power - a moral challenge] [Danish]. vol. 1. udgave. Kbh.: Munksgaard Danmark; 1999.

Rasmussen TS, Delmar C. Dignity as an empirical lifeworld construction In the field of surgery in Denmark Int J Qual Stud Health Well-being 2014;1:1–13.

McCabe PJ. What patients want and need to know about atrial fibrillation. J Multidiscip Healthc 2011;4:413–9.

Bohnen M, Shea JB, Michaud GF, John R, Stevenson WG, Epstein LM, Tedrow UB, Albert C, Koplan B a. Quality of Life with Atrial Fibrillation: Do the Spouses Suffer as Much as the Patients? Pacing Clin Electrophysiol 2011;34:804–9. doi:10.1111/j.1540-8159.2011.03111.x; 10.1111/j.1540-8159.2011.03111.x.

O’Hara NN, Mugarura R, Slobogean GP, Bouchard M. The orthopaedic trauma patient experience: a qualitative case study of orthopaedic trauma patients in Uganda. PLoS One 2014;9:e110940. doi:10.1371/journal.pone.0110940.

Showell C, Cummings E, Turner P. Language Games and Patient-centred eHealth. Stud Heal Technol Inf 2010;61:55–61.

Chick N, Meleis A. Transitions : A Nursing Concern. In: PL Chinn (Ed): Nursing Research Methodology. Boulder, CO: Aspen Publications, 1986, pp 237–57.

Wood K a, Wiener CL, Kayser-Jones J. Supraventricular tachycardia and the struggle to be believed. Eur J Cardiovasc Nurs 2007;6:293–302.

Eriksen TE, Risør MB. What is called symptom? Med Heal Philos 2013. doi:10.1007/s11019-013-9501-5.

Spradley J. Participant observation. New York: Holt Rinehart and Winston; 1980.




DOI: http://dx.doi.org/10.5750/ijpcm.v5i4.533

Refbacks

  • There are currently no refbacks.