Restricted accessResearch articleFirst published online 2021-2
Unexplored Aspects of the Meaning of Living with Chronic Heart Failure: A Phenomenological Study within the Framework of the Model of Interpersonal Relationship between the Nurse and the Person/Family Cared for
The complicated situation experienced by chronic heart failure (CHF) patients affects their entire well-being but clinical practice continues to fail to adequately respond to their demands. The aim of this study was to understand the meaning of living with CHF from the patient’s perspective. A hermeneutic phenomenological study was conducted according to Van Manen’s phenomenology of practice method. Individual conversational interviews were held with 20 outpatients with CHF. Six main themes emerged from the analysis: (1) Living with CHF involves a profound change in the person; (2) The person living with CHF has to accept their situation; (3) The person with CHF needs to feel that their life is normal and demonstrate it to others; (4) The person with CHF needs to have hope; (5) Having CHF makes the person continuously aware of the possibility of dying; (6) The person with CHF feels that it negatively influences their close environment.
AllenJ. W.Arslanian-EngorenC.Lynch-SauerJ. (2009). The lived experience of middle-aged women with New York Heart Association Class III heart failure: A pilot study. Progress in Cardiovascular Nursing, 24(3), 96–101.
2.
AmbrosyA. P.FonarowG. C.ButlerJ.ChioncelO.GreeneS. J.VaduganathanM.NodariS.LamC. S. P.SatoN.ShahA. N.GheorghiadeM. (2014). The global health and economic burden of hospitalizations for heart failure: Lessons learned from hospitalized heart failure registries. Journal of American College of Cardiology, 63(12), 1123–1133.
3.
BennerP. (1994). Interpretive phenomenology: Embodiment, caring, and ethics in health and illness. Sage Publications.
4.
CarpenterD. R. (2011). Phenomenology as method. In: SpezialeH. S.CarpenterD. R. (Eds.), Qualitative research in nursing: Advancing the humanistic imperative (5th ed.). Wolters Kluwer Health/Lippincott Williams & Wilkins.
5.
ClarkA. M.SpalingM.HarknessK.SpiersJ.StrachanP. H.ThompsonD. R.CurrieK. (2014). Determinants of effective heart failure self-care: A systematic review of patients’ and caregivers’ perceptions. Heart, 100(9), 716–721.
6.
DavidsonP. M.DracupK.PhillipsJ.DalyJ.PadillaG. (2007). Preparing for the worst while hoping for the best: The relevance of hope in the heart failure illness trajectory. Journal of Cardiovascular Nursing, 22(3), 159–165.
7.
Declaration of Helsinki. (1964). Human experimentation code of ethics of the world medical association. British Medical Journal, 2(5402), 177.
8.
DuboulozC. J.KingJ.PatersonB.AsheB.ChevrierJ.MoldoveanuM. (2010). A model of the process of transformation in primary care for people living with chronic illnesses. Chronic Illness, 6(4), 282–293.
9.
EricksonJ. I.JonesD. A.DitomassiM. (2013). Fostering nurse-led care: Professional practice for the bedside leader from Massachusetts general hospital. Sigma Theta Tau International.
10.
EuropeE.Tyni-LennéR. (2004). Qualitative analysis of the male experience of heart failure. Heart and Lung, 33(4), 227–234.
11.
EvangelistaL. S.DoeringL. V.DracupK.VassilakisM. E.KobashigawaJ. (2003). Hope, mood states and quality of life in female heart transplant recipients. Journal of Heart Lung Transplantation, 22(6), 681–686.
12.
FalkS.WahnA. K.LidellE. (2007). Keeping the maintenance of daily life in spite of chronic heart failure. A qualitative study. European Journal of Cardiovascular Nursing, 6(3), 192–199.
13.
FarréN.VelaE.ClèriesM.BustinsM.Cainzos-AchiricaM.EnjuanesC.MolinerP.RuizS.Verdú-RotellarJ. M.Comín-ColetJ. (2016). Medical resource use and expenditure in patients with chronic heart failure: A population-based analysis of 88 195 patients. European Journal of Heart Failure, 18(9), 1132–1140.
14.
FeoR.ConroyT.MarshallR. J.RasmussenP.WiechulaR.KitsonA. L. (2017). Using holistic interpretive synthesis to create practice-relevant guidance for person-centred fundamental care delivered by nurses. Nursing Inquiry, 24(2), e12152.
15.
FraserD. D.KeeC. C.MinickP. (2006). Living with chronic obstructive pulmonary disease: Insiders’ perspectives. Journal of Advance Nursing, 55(5), 550–558.
16.
GottM.SmallN.BarnesS.PayneS.SeamarkD. (2008). Older people’s views of a good death in heart failure: Implications for palliative care provision. Social Science & Medicine, 67(7), 1113–1121.
17.
GrecoA.PancaniL.SalaM.AnnoniA. M.StecaP.PaturzoM.D’AgostinoF.AlvaroR.VelloneE. (2017). Psychometric characteristics of the caregiver burden inventory in caregivers of adults with heart failure. European Journal of Cardiovascular Nursing, 16(6), 502–510.
18.
GusdalA. K.JosefssonK.Thors AdolfssonE.MartinL. (2017). Nurses’ attitudes toward family importance in heart failure care. European Journal of Cardiovascular Nursing, 16(3), 256–266.
19.
HeideggerM. (1996). Being and time. State University of New York Press.
20.
HjelmforsL.SandgrenA.StrömbergA.MårtenssonJ.JaarsmaT.FriedrichsenM. (2018). “I was told that I would not die from heart failure”: Patient perceptions of prognosis communication. Applied Nursing Research, 41, 41–45.
21.
Hurd ClarkeL.KorotchenkoA.BundonA. (2012). ‘The calendar is just about up’: Older adults with multiple chronic conditions reflect on death and dying. Ageing & Society, 32(8), 1399–1417.
JoachimG.AcornG. (2000). Living with chronic illness: The interface of stigma and normalization. Canadian Journal of Nursing Research, 32(3), 37–48.
24.
JohnsonL. H.DahlenR.RobertsS. L. (1997). Supporting hope in congestive heart failure patients. Dimensions of Critical Care Nursing, 16(2), 65–78.
25.
KahanaB.DanA.KahanaE.KercherK. (2004). The personal and social context of planning for end-of-life care. Journal of the American Geriatrics Society, 52(7), 1163–1167.
26.
KessingD.DenolletJ.WiddershovenJ.KupperN. (2017). Self-care and health-related quality of life in chronic heart failure: A longitudinal analysis. European Journal of Cardiovascular Nursing, 16(7), 605–613.
27.
KraaiI. H.VermeulenK. M.HillegeH. L.JaarsmaT. (2018). “Not getting worse” a qualitative study of patients perceptions of treatment goals in patients with heart failure. Applied Nursing Research, 39, 41–45.
28.
KralikD. (2002). The quest for ordinariness: Transition experienced by midlife women living with chronic illness. Journal of Advance Nursing, 39(2), 146–154.
29.
KylmäJ.Vehviläinen-JulkunenK. (1997). Hope in nursing research: A meta-analysis of the ontological and epistemological foundations of the research on hope. Journal of Advanced Nursing, 25(2), 364–371.
30.
LeemingA.MurrayS. A.KendallM. (2014). The impact of advanced heart failure on social, psychological and existential aspects and personhood. European Journal of Cardiovascular Nursing, 13(2), 162–167.
31.
LewisS.WillisK.YeeY.KilbreathS. (2016). Living well? Strategies used by women living with metastatic breast cancer. Qualitative Health Research, 26(9), 1167–1179.
32.
LocockL.ZieblandS.DumelowC. (2009). Biographical disruption, abruption and repair in the context of motor neurone disease. Sociology of Health & Illness, 31(7), 1043–1058.
33.
MartinC. M.GradyD.DeaconkingS.McMahonC.ZarabzadehA.O’SheaB. (2011). Complex adaptive chronic care - typologies of patient journey: A case study. Journal of Evaluation in Clinical Practice, 17(3), 520–524.
34.
MolloyG. J.JohnstonD. W.WithamM. D. (2005). Family caregiving and congestive heart failure. Review and analysis. European Journal of Heart Failure, 7(4), 592–603.
35.
NewmanM. A.SmithM. C.PharrisM. D.JonesD. (2008). The focus of the discipline revisited. Advances in Nursing Science, 31(1), 16–27.
36.
Olano-LizarragaM.OroviogoicoecheaC.Errasti-IbarrondoB.Saracíbar-RazquinM. (2016). The personal experience of living with chronic heart failure: A qualitative meta-synthesis of the literature. Journal of Clinical Nursing, 25(17–18), 2413–2429.
37.
OyangurenJ.Latorre GarcíaP. M.Torcal LagunaJ.Lekuona GoyaI.Rubio MartínS.Maull LafuenteE.GrandesG. (2016). Effectiveness and factors determining the success of management programs for patients with heart failure: A systematic review and meta-analysis. Revista Española de Cardiología, 69(10), 900–914.
38.
PetruzzoA.PaturzoM.NalettoM.CohenM. Z.AlvaroR.VelloneE. (2017). The lived experience of caregivers of persons with heart failure: A phenomenological study. European Journal of Cardiovascular Nursing, 16(7), 638–645.
39.
PonikowskiP.VoorsA. A.AnkerS. D.BuenoH.ClelandJ. G. F.CoatsA. J. S.FalkV.González-JuanateyJ. R.HarjolaV. P.JankowskaE. A.JessupM.LindeC.NihoyannopoulosP.ParissisJ. T.PieskeB.RileyJ. P.RosanoG. M. C.RuilopeL. M.RuschitzkaF.. . . ESC Scientific Document Group. (2016). 2016 ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure: The task force for the diagnosis and treatment of acute and chronic heart failure of the European Society of Cardiology (ESC). Developed with the special contribution of the Heart Failure Association (HFA) of the ESC. European Heart Journal, 37(27), 2129–2200.
40.
Pratt HoppF.ThorntonN.MartinL. (2010). The lived experience of heart failure at the end of life: A systematic literature review. Health & Social Work, 35(2), 109–117.
41.
PresslerS. J.Gradus-PizloI.ChubinskiS. D.SmithG.WheelerS.SloanR.JungM. (2013). Family caregivers of patients with heart failure. A longitudinal study. Journal of Cardiovascular Nursing, 28(5), 417–428.
42.
RoyC.JonesD. A. (2007). Nursing knowledge development and clinical practice. Springer Publishing Company.
43.
Rumeu-CasaresC.OroviogoicoecheaC.JonesD.Saracíbar-RazquinM. (2017). Modelo de Práctica Profesional de Enfermería Clínica Universidad de Navarra: marco para el desarrollo de la práctica enfermera. Tesela, 22, 1–6.
44.
Saracíbar RázquinM. I. (2009). About the nature of the relationship between the nurse and the ill person. Understanding its meaning. Doctoral dissertation. University of Navarra.
45.
Sayago-SilvaI.García-LópezF.Segovia-CuberoJ. (2013). Epidemiología de la insuficiencia cardiaca en España en los últimos 20 años. Revista Española de Cardiología, 66(8), 649–656.
46.
SeahA. C. W.TanK. K.GanJ. C. H.WangW. (2016). Experiences of patients living with heart failure: A descriptive qualitative study. Journal of Transcultural Nursing, 27(4), 392–399.
47.
SedlarN.LainscakM.MårtenssonJ.StrömbergA.JaarsmaT.FarkasJ. (2017). Factors related to self-care behaviours in heart failure: A systematic review of European heart failure self-care behaviour scale studies. European Journal of Cardiovascular Nursing, 16(4), 272–282.
48.
SezginD.MertH.ÖzpelitE.AkdenizB. (2017). The effect on patient outcomes of a nursing care and follow-up program for patients with heart failure: A randomized controlled trial. International Journal of Nursing Studies, 70, 17–26.
49.
SmithC. E.PiamjariyakulU.DaltonK. M.RussellC.WickJ.EllerbeckE. F. (2015). Nurse-led multidisciplinary heart failure group clinic appointments methods, materials, and outcomes used in the clinical trial. Journal of Cardiovascular Nursing, 30(4), 25–34.
50.
StrömbergA.JaarsmaT. (2008). Thoughts about death and perceived health status in elderly patients with heart failure. European Journal of Heart Failure, 10(6), 608–613.
51.
TelfordK.KralikD.KochT. (2006). Acceptance and denial: implications for people adapting to chronic illness: Literature review. Journal of Advanced Nursing, 55(4), 457–464.
52.
ThornhillK.LyonsA. C.NouwenA.LipG. Y. H. (2008). Experiences of living with congestive heart failure: A qualitative study. British Journal of Health Psychology, 13, 155–175.
53.
Van ManenM. (1990). Researching lived experience: Human science for an action sensitive pedagogy. SUNY Press.
54.
Van ManenM. (2014). Phenomenology of practice: Meaning-giving methods in phenomenological research and writing. Left Coast Press.
55.
WellardS. (1998). Constructions of chronic illness. International Journal of Nursing Studies, 35(1–2), 49–55.
56.
WelstandJ.CarsonA.RutherfordP. (2009). Living with heart failure: An integrative review. International Journal of Nursing Studies, 46(10), 1374–1385.
57.
YoullJ.MeekoshaH. (2013). Always look on the bright side of life: Cancer and positive thinking. Journal of Sociology, 49(1), 22–40.
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