Development of a scale to gain insight into the experience of living with chronic heart failurethe UNAV-Experience of Living with Chronic Heart Failure Scale
- Maribel Saracíbar-Razquin 1
- Amparo Zaragoza-Salcedo 1
- Jesús Martín-Martín 1
- José Luis Cobo-Sanchez
- Santiago Pérez-García 2
- Aurora Simón-Ricart 3
- Pilar Ara-Lucea 3
- Leticia Jimeno-San Martín 3
- Montserrat Ducay-Eguillor 3
- Noelia De La Torre-Lomas 4
- Jesica Pérez-Herreros 5
- Maddi Olano-Lizarraga 1
-
1
Universidad de Navarra
info
- 2 Clínica Mompía. Mompía
-
3
Clínica Universitaria de Navarra
info
- 4 Hospital 12 de Octubre, Madrid
- 5 Hospital Universitario Marqués de Valdecilla, Santander
ISSN: 1137-6627
Datum der Publikation: 2024
Ausgabe: 47
Nummer: 1
Seiten: 55-66
Art: Artikel
Andere Publikationen in: Anales del sistema sanitario de Navarra
Zusammenfassung
Background. To date, there are no tools for the nursing staff to gain systematic insight on the experience lived by patients with chronic heart failure. The objective of this study was to develop a scale for this purpose.Methods. The study was conducted between January 2018 and December 2020 in three Spanish hospitals. The process de-scribed by DeVellis was used for the development of the scale. The items were built based on a phenomenological study and a systematic review of the literature. Next, feedback from a panel of experts was obtained, the scale was administered to a sample of patients with chronic heart failure, and a cognitive interview and an observational study were conducted to create the final version of the scale.Results. The first version of the scale had in seven domains and 76 items. After its evaluation by a panel of experts, it was reduced to a second version with six domains and 55 items. Following the administration of Version 2 to 17 patients (58.8% male, mean age 59.53, 70.6% classified as NYHA functional class II), five items were modified and two eliminated. Thus, the third version of the UNAV-CHF Experience Scale was com-posed of six domains and 53 items.Conclusions. This study presents the development of the UNAV-experience of living with chronic heart failure scale. It is an original and novel instrument that allows systematically explore this experience. A larger-scale study is necessary to confirm the validity of our scale
Bibliographische Referenzen
- MCDONAGH TA, METRA M, ADAMO M, GARDNER RS, BAUMBACH A, BÖHM M et al. 2021 ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure. Eur Heart J 2021; 42(36): 3599-3726. https://doi.org/10.1093/eurheartj/ehab368
- SACKS CA, JARCHO JA, CURFMAN GD. Paradigm Shifts in Heart-Failure Therapy — A Timeline. N Engl J Med. 2014; 371(11): 989-991. https://doi.org/10.1056/nejmp1410241
- CALERO-MOLINA E, MOLINER P, HIDALGO E, ROSENFELD L, VERDÚ-ROTELLAR JM, VERDÚ-SORIANO J et al. Interplay between psychosocial and heart failure related factors may partially explain limitations in self-efficacy in patients with heart failure: Insights from a real-world cohort of 1,123 patients. Int J Nurs Stud 2022; 129: 104233. https://doi.org/10.1016/j.ijnurstu.2022.104233
- VIRANI SS, ALONSO A, BENJAMIN EJ, BITTENCOURT MS, CALLAWAY CW, CARSON AP et al. Heart disease and stroke statistics-2020 update: a report from the American Heart Association. Circulation 2020; 141(9): e139-596. https://doi.org/10.1161/cir.0000000000000757
- MÜLLER-TASCH T, LÖWE B, LOSSNITZER N, FRANKENSTEIN L, TÄGER T, HAASS M et al. Anxiety and self-care behaviour in patients with chronic systolic heart failure: A multivariate model. Eur J Cardiovasc Nurs 2018; 17(2): 170-177. https://doi.org/10.1177/1474515117722255
- SEAH ACW, TAN KK, GAN JCH, WANG W. Experiences of patients living with heart failure: A descriptive qualitative study. J Transcult Nurs 2016; 27(4): 392-399. https://doi.org/10.1177/1043659615573840
- CHECA C, MEDINA-PERUCHA L, MUÑOZ MÁ, VERDÚ-ROTELLAR JM, BERENGUERA A. Living with advanced heart failure: A qualitative study. PLoS One 2020; 15(12): e0243974. https://doi.org/10.1371/journal.pone.0243974
- JEON YH, KRAUS SG, JOWSEY T, GLASGOW NJ. The experience of living with chronic heart failure: A narrative review of qualitative studies. BMC Health Serv Res 2010; 10. https://doi.org/10.1186/1472-6963-10-77
- YU DSFF, LEE DTFF, KWONG ANTT, THOMPSON DR, WOO J. Living with chronic heart failure: A review of qualitative studies of older people. J Adv Nurs 2008; 61(5): 474-483. https://doi.org/10.1111/j.1365-2648.2007.04553.x
- WELSTAND J, CARSON A, RUTHERFORD P. Living with heart failure: An integrative review. Int J Nurs Stud 2009; 46(10): 1374-1385. https://doi.org/10.1016/j.ijnurstu.2009.03.009
- OLANO-LIZARRAGA M, OROVIOGOICOECHEA C, ERRASTI-IBARRONDO B, SARACÍBAR-RAZQUIN M. The personal experience of living with chronic heart failure: a qualitative meta-synthesis of the literature. J Clin Nurs. 2016; 25(17-18): 2413-2429. https://doi.org/10.1111/jocn.13285
- OLANO-LIZARRAGA M, MARTÍN-MARTÍN J, OROVIOGOICOECHEA C, SARACÍBAR-RAZQUIN M. 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. Clin Nurs Res 2021; 30(2): 171-182. https://doi.org/10.1177/1054773819898825
- OYANGUREN J, LATORRE GARCÍA PM, TORCAL LAGUNA J, LEKUONA GOYA I, RUBIO MARTÍN S, MAULL LAFUENTE E et al. Effectiveness and factors determining the success of management programs for patients with heart failure: a systematic review and meta-analysis. Rev Esp Cardiol 2016; 69(10): 900-914.
- GARIN O, HERDMAN M, VILAGUT G, FERRER M, RIBERA A, RAJMIL L et al. Assessing health-related quality of life in patients with heart failure: A systematic, standardized comparison of available measures. Heart Fail Rev 2014; 19(3): 359-367. https://doi.org/10.1007/s10741-013-9394-7
- MARTÍN J, CARVAJAL A, ARANTZAMENDI M. Instrumentos para valorar al paciente con insuficiencia cardiaca avanzada: Una revisión de la literatura. An Sist Sanit Navar 2015; 38(3): 439-452. https://doi.org/10.4321/S1137-66272015000300008
- ASANO R, ANDERSON KM, KOIRALA B, ABSHIRE M, HIMMELFARB CD, DAVIDSON PM. The edmonton symptom assessment scale in heart failure. J Cardiovasc Nurs. 2022; 37(4): 341-349. https://doi.org/10.1097/jcn.0000000000000835
- GIANNITSI S, BOUGIAKLI M, BECHLIOULIS A, KOTSIA A, MICHALIS LK, NAKA KK. 6-Minute walking test: a useful tool in the management of heart failure patients. Ther Adv Cardiovasc Dis 2019; 13: 1-10. https://doi.org/10.1177%2F1753944719870084
- FREEDLAND KE, STEINMEYER BC, CARNEY RM, RUBIN EH, RICH MW. Use of the PROMIS® depression scale and the beck depression inventory in patients with heart failure. Health Psychol 2019; 38(5): 369-375. https://doi.org/10.1037/hea0000682
- WALDRÉUS N, JAARSMA T, VAN DER WAL MHL, KATO NP. Development and psychometric evaluation of the Thirst Distress Scale for patients with heart failure. Eur J Cardiovasc Nurs 2018; 17(3): 226-234. https://doi.org/10.1177/1474515117728624
- EL HADIDI S, DARWEESH E, BYRNE S, BERMINGHAM M. A tool for assessment of heart failure prescribing quality: A systematic review and meta‐analysis. Pharmacoepidemiol Drug Saf 2018; 27(7): 685-694. https://doi.org/10.1002/pds.4430
- KÖBERICH S, KATO NP, KUGLER C, STRÖMBERG A, JAARSMA T. Methodological quality of studies assessing validity and reliability of the European Heart Failure Self-care Behaviour Scale: a systematic review using the COSMIN methodology. Eur J Cardiovasc Nurs 2021; 20(5): 501-512. https://doi.org/10.1093/eurjcn/zvab018
- MATSUOKA S, KATO N, KAYANE T, YAMADA M, KOIZUMI M, IKEGAME T et al. Development and validation of a heart failureyspecific health literacy scale. J Cardiovasc Nurs 2016; 31(2): 131-139. https://doi.org/10.1097/jcn.0000000000000226
- EKMAN I, SWEDBERG K, TAFT C, LINDSETH A, NORBERG A, BRINK E et al. Person-centered care - Ready for prime time. Eur J Cardiovasc Nurs 2011; 10(4): 248-251. https://doi.org/10.1016/j.ejcnurse.2011.06.008
- OLANO-LIZARRAGA M, MARTÍN-MARTÍN J, OROVIOGOICOECHEA C, SARACÍBAR-RAZQUIN M. 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. Clin Nurs Res 2021; 30(2): 171-182. https://doi.org/10.1177/1054773819898825
- KRAAI IH, VERMEULEN KM, HILLEGE HL, JAARSMA T. “Not getting worse” a qualitative study of patients perceptions of treatment goals in patients with heart failure. Appl Nurs Res 2018; 39: 41-45. https://doi.org/10.1016/j.apnr.2017.10.010
- SARACÍBAR RAZQUIN MI. Acerca de la naturaleza de la relación entre la enfermera y la persona enferma. Comprender su significado. Pamplona: Universidad de Navarra, 2009.
- OLANO-LIZARRAGA M, ZARAGOZA-SALCEDO A, MARTÍN-MARTÍN J, SARACÍBAR-RAZQUIN M. Redefining a “new normality”: A hermeneutic phenomenological study of the experiences of patients with chronic heart failure. J Adv Nurs 2020; 76(1): 275-286. https://doi.org/10.1111/jan.14237
- OLANO-LIZARRAGA M, MARTÍN-MARTÍN J, PÉREZ-DÍEZ DEL CORRAL M, SARACÍBAR-RAZQUIN M. Experiencing the possibility of near death on a daily basis: A phenomenological study of patients with chronic heart failure. Heart Lung 2022; 51: 32-39. https://doi.org/10.1016/j.hrtlng.2021.08.006
- MARTÍN-MARTÍN J, PÉREZ-DÍEZ-DEL-CORRAL M, OLANO-LIZARRAGA M, VALENCIA-GIL S, SARACÍBAR-RAZQUIN MI. Family narratives about providing end-of-life care at home. J Fam Nurs 2022; 107484072110255. https://doi.org/10.1177/10748407211025579
- DEVELLIS RF. Scale development: theory and applications. 4th ed. Los Angeles: Sage Publications, 2017.
- GRAY JR, GROVE SK, SUTHERLAND S. Sampling. In: Burns & Grove’s the practice of nursing research: appraisal, synthesis, and generation of evidence. 8th ed. St. Louis: Elsevier, 2017.
- VAN BULCK L, WAMPERS M, MOONS P. Research Electronic Data Capture (REDCap): tackling data collection, management, storage, and privacy challenges. Eur J Cardiovasc Nurs 2022; 21(1): 85-91. https://doi.org/10.1093/eurjcn/zvab104
- BURNARD P. A method of analysing interview transcripts in qualitative research. Nurse Educ Today 1991; 11(6): 461-466. https://doi.org/10.1016/0260-6917(91)90009-y
- WALTHALL H, JENKINSON C, BOULTON M. Living with breathlessness in chronic heart failure: a qualitative study. J Clin Nurs 2017; 26(13-14): 2036-2044. https://doi.org/10.1111/jocn.13615
- SCHJOEDT I, SOMMER I, BJERRUM MB. Experiences and management of fatigue in everyday life among adult patients living with heart failure: a systematic review of qualitative evidence. JBI Database System Rev Implement Rep 2016 Mar; 14(3): 68-115. https://doi.org/10.11124/jbisrir-2016-2441
- SEDLAR N, LAINSCAK M, FARKAS J. Living with chronic heart failure: Exploring patient, informal caregiver, and healthcare professional perceptions. Int J Environ Res Public Health 2020; 17(8). https://doi.org/10.3390/ijerph17082666
- LEWIS S, WILLIS K, YEE J, KILBREATH S. Living Well? Strategies Used by Women Living with Metastatic Breast Cancer. Qual Health Res 2016; 26(9): 1167-1179. https://doi.org/10.1177/1049732315591787
- AASBØ G, SOLBRÆKKE KN, KRISTVIK E, WERNER A. Between disruption and continuity: challenges in maintaining the ‘biographical we’ when caring for a partner with a severe, chronic illness. Sociol Health Illn 2016; 38(5): 782-796. https://doi.org/10.1111/1467-9566.12396
- MENDENHALL E, MCMURRY HS, SHIVASHANKAR R, NARAYAN KMV, TANDON N, PRABHAKARAN D. Normalizing diabetes in Delhi: a qualitative study of health and health care. Anthropol Med 2016; 23(3): 295-310. https://doi.org/10.1080/13648470.2016.1184010
- SANDERSON T, CALNAN M, MORRIS M, RICHARDS P, HEWLETT S. Shifting normalities: Interactions of changing conceptions of a normal life and the normalisation of symptoms in rheumatoid arthritis. Sociol Health Illn 2011; 33(4): 618-633. https://doi.org/10.1111/j.1467-9566.2010.01305.x
- DAVIDSON PM, DRACUP K, PHILLIPS J, DALY J, PADILLA G. Preparing for the worst while hoping for the best: The relevance of hope in the heart failure illness trajectory. J Cardiovasc Nurs 2007; 22(3): 159-165. https://doi.org/10.1097/01.jcn.0000267821.74084.72
- RUSTØEN, T, HOWIE, J, EIDSMO, I, MOUM T. Hope in patients hospitalized with heart failure. Am J Crit Care 2005; 14(5): 417-425.
- STRÖMBERG A, JAARSMA T. Thoughts about death and perceived health status in elderly patients with heart failure. Eur J Heart Fail 2008; 10(6): 608-613. https://doi.org/10.1016/j.ejheart.2008.04.011
- WILLEMS DL, HAK A, VISSER F, VAN DER WAL G. Thoughts of patients with advanced heart failure on dying. Palliat Med 2004; 18(6): 564-572. https://doi.org/10.1191/0269216304pm919oa
- Schulz VM, Crombeen AM, Marshall D, Shadd J, LaDonna KA, Lingard L. Beyond simple planning: existential dimensions of conversations with patients at risk of dying from heart failure. J Pain Symptom Manage 2017; 54(5): 637-644. https://doi.org/10.1016/j.jpainsymman.2017.07.041
- TESTA M, CAPPUCCIO A, LATELLA M, NAPOLITANO S, MILLI M, VOLPE M et al. The emotional and social burden of heart failure: integrating physicians’, patients’, and caregivers’ perspectives through narrative medicine. BMC Cardiovasc Disord 2020; 20(1): 522. https://doi.org/10.1186/s12872-020-01809-2
- HOPP FP, THORNTON N, MARTIN L. The lived experience of heart failure at the end of life: a systematic literature review. Health Soc Work 2010; 35(2): 109-117. https://doi.org/10.1093/hsw/35.2.109