{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,15]],"date-time":"2025-12-15T14:07:40Z","timestamp":1765807660827,"version":"3.37.3"},"reference-count":34,"publisher":"FapUNIFESP (SciELO)","issue":"1","license":[{"start":{"date-parts":[[2019,2,1]],"date-time":"2019-02-01T00:00:00Z","timestamp":1548979200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2019,2,1]],"date-time":"2019-02-01T00:00:00Z","timestamp":1548979200000},"content-version":"am","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2019,2,1]],"date-time":"2019-02-01T00:00:00Z","timestamp":1548979200000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Rev. Bras. Enferm."],"abstract":"<jats:p>ABSTRACT  Objective: To explore the meaning of being a family caregiver for a relative with advanced heart failure (HF) in their own home, and to gain an understanding of how dignity is upheld in family caregiving contexts.  Method: We used a phenomenological-hermeneutical method inspired by the Ricoeurian philosophy. Portuguese caregivers for relatives with advanced HF participated in two reflective interviews over a four-month period.  Results: The ten family caregivers enrolled in this study included two daughters and eight spouses with a mean age of 70 years. We identified two main themes: (1) Struggle between inner force and sense of duty; (2) Struggle between feelings of burden and security.  Final considerations: People with HF have debilitating symptoms associated with psychological stress, which can burden both them and their family caregivers. Findings support that family caregivers require participation in the planning and execution of their relative's health care.<\/jats:p>","DOI":"10.1590\/0034-7167-2018-0645","type":"journal-article","created":{"date-parts":[[2019,3,26]],"date-time":"2019-03-26T22:05:17Z","timestamp":1553637917000},"page":"162-169","source":"Crossref","is-referenced-by-count":7,"title":["Illness trajectory in heart failure: narratives of family caregivers"],"prefix":"10.1590","volume":"72","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7999-1203","authenticated-orcid":false,"given":"Carlos","family":"Sampaio","sequence":"first","affiliation":[{"name":"Universidade Cat\u00f3lica Portuguesa,  Portugal"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5712-8679","authenticated-orcid":false,"given":"Isabel","family":"Renaud","sequence":"additional","affiliation":[{"name":"Universidade Cat\u00f3lica Portuguesa,  Portugal"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5155-0120","authenticated-orcid":false,"given":"Paula Ponce","family":"Le\u00e3o","sequence":"additional","affiliation":[{"name":"Universidade de Coimbra,  Portugal"}]}],"member":"530","published-online":{"date-parts":[[2019,2]]},"reference":[{"issue":"12","key":"ref1","doi-asserted-by":"crossref","first-page":"1123","DOI":"10.1016\/j.jacc.2013.11.053","article-title":"The global health and economic burden of hospitalizations for heart failure: lessons learned from hospitalized heart failure registries","volume":"63","author":"Ambrosy A","year":"2014","journal-title":"J Am Coll Cardiol"},{"issue":"9970","key":"ref2","doi-asserted-by":"crossref","first-page":"812","DOI":"10.1016\/S0140-6736(14)61889-4","article-title":"The war against heart failure: The Lancet lecture","volume":"385","author":"Braunwald E","year":"2015","journal-title":"Lancet"},{"key":"ref3","doi-asserted-by":"crossref","first-page":"1137","DOI":"10.1136\/hrt.2003.025270","article-title":"Clinical epidemiology of heart failure","volume":"93","author":"Mosterd A","year":"2007","journal-title":"Heart"},{"key":"ref4","doi-asserted-by":"crossref","first-page":"531","DOI":"10.1016\/S1388-9842(02)00034-X","article-title":"Prevalence of chronic heart failure in Southwestern Europe: the EPICA study","volume":"4","author":"Ceia F","year":"2002","journal-title":"Eur J Heart Fail"},{"issue":"10","key":"ref5","doi-asserted-by":"crossref","first-page":"e146","DOI":"10.1161\/CIR.0000000000000485","article-title":"American Heart Association Statistics Committee and Stroke Statistics Subcommittee. Heart disease and stroke statistics - 2017 update: a report from the American Heart Association","volume":"135","author":"Benjamin E","year":"2017","journal-title":"Circulation"},{"issue":"6","key":"ref6","doi-asserted-by":"crossref","first-page":"646","DOI":"10.1161\/CIRCRESAHA.113.300268","article-title":"Epidemiology of heart failure","volume":"113","author":"Roger V","year":"2013","journal-title":"Circ Res"},{"key":"ref7","article-title":"Older people living with chronic illness","author":"Chiaranai C","year":"2018","journal-title":"Geriatr Nurs"},{"issue":"1","key":"ref8","doi-asserted-by":"crossref","first-page":"34","DOI":"10.1111\/j.1440-1630.2009.00847.x","article-title":"Impact of fatigue on everyday life among older people with chronic heart failure","volume":"57","author":"Norberg E","year":"2010","journal-title":"Aust Occup Ther J"},{"issue":"4","key":"ref9","doi-asserted-by":"crossref","first-page":"304","DOI":"10.1177\/1742395315574765","article-title":"Needs of caregivers in heart failure management: A qualitative study","volume":"11","author":"Wingham J","year":"2015","journal-title":"Chronic Illn"},{"issue":"9","key":"ref10","doi-asserted-by":"crossref","first-page":"716","DOI":"10.1136\/heartjnl-2013-304852","article-title":"Determinants of effective heart failure self-care: a systematic review of patients and caregivers perceptions","volume":"100","author":"Clark A","year":"2014","journal-title":"Heart"},{"issue":"5","key":"ref11","doi-asserted-by":"crossref","first-page":"386","DOI":"10.1097\/JCN.0b013e3182076a69","article-title":"Informal caregivers' experiences of caring for patients with chronic heart failure: systematic review and metasynthesis of qualitative studies","volume":"26","author":"Kang X","year":"2011","journal-title":"J Cardiovasc Nurs"},{"issue":"5","key":"ref12","doi-asserted-by":"crossref","first-page":"543","DOI":"10.1007\/s10741-017-9597-4","article-title":"Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review","volume":"22","author":"Dionne-Odom J","year":"2017","journal-title":"Heart Fail Rev"},{"issue":"3","key":"ref13","doi-asserted-by":"crossref","first-page":"113","DOI":"10.1111\/j.1751-7117.2009.00046.x","article-title":"Heart Failure and Family Caregiver Burden: an update","volume":"24","author":"Usher B","year":"2009","journal-title":"Prog Cardiovasc Nurs"},{"issue":"1","key":"ref14","doi-asserted-by":"crossref","first-page":"79","DOI":"10.1177\/1474515113518434","article-title":"Caregivers' contributions to heart failure self-care: a systematic review","volume":"14","author":"Buck H","year":"2015","journal-title":"Eur J Cardiovasc Nurs"},{"issue":"4","key":"ref15","doi-asserted-by":"crossref","first-page":"306","DOI":"10.1016\/j.hrtlng.2014.05.002","article-title":"Caregiving in heart failure: Relationship quality is associated with caregiver benefit finding and caregiver burden","volume":"43","author":"Lum H","year":"2014","journal-title":"Heart Lung"},{"issue":"2","key":"ref16","doi-asserted-by":"crossref","first-page":"130","DOI":"10.1191\/0969733006ne851oa","article-title":"Views on dignity of elderly nursing home residents","volume":"13","author":"Franklin L","year":"2006","journal-title":"Nurs Ethics"},{"year":"2006","series-title":"The suffering human being","author":"Eriksson K","key":"ref17"},{"issue":"8","key":"ref18","doi-asserted-by":"crossref","first-page":"904","DOI":"10.1177\/0969733013484488","article-title":"Ethical issues in patient safety: Implications for nursing management","volume":"20","author":"Kangasniemi M","year":"2013","journal-title":"Nurs Ethics"},{"issue":"8","key":"ref19","doi-asserted-by":"crossref","first-page":"851","DOI":"10.1177\/0969733013487193","article-title":"Concept determination of human dignity","volume":"20","author":"Edlund M","year":"2013","journal-title":"Nurs Ethics"},{"issue":"3","key":"ref20","doi-asserted-by":"crossref","first-page":"251","DOI":"10.1016\/j.ejcnurse.2005.01.006","article-title":"Developing clinical knowledge through a narrative-based method of interpretation","volume":"4","author":"Ekman I","year":"2005","journal-title":"Eur J Cardiovasc Nurs"},{"year":"1976","series-title":"Interpretation theory: discourse and surplus of meaning","author":"Ricoeur P","key":"ref21"},{"year":"1995","series-title":"Hermeneutics and the human sciences: essays on language, action and interpretation","author":"Ricoeur P","key":"ref22"},{"year":"2004","series-title":"Truth and Method","author":"Gadamer H","key":"ref23"},{"issue":"17","key":"ref24","doi-asserted-by":"crossref","first-page":"1527","DOI":"10.1053\/euhj.2001.2783","article-title":"Guidelines for the diagnosis and treatment of chronic heart failure","volume":"22","author":"Remme WJ","year":"2001","journal-title":"Eur Heart J"},{"year":"2012","series-title":"NVIVO","key":"ref25"},{"issue":"2","key":"ref26","doi-asserted-by":"crossref","first-page":"145","DOI":"10.1111\/j.1471-6712.2004.00258.x","article-title":"A phenomenological hermeneutical method for researching lived experience","volume":"18","author":"Lindseth A","year":"2004","journal-title":"Scand J Caring Sci"},{"issue":"2","key":"ref27","doi-asserted-by":"crossref","first-page":"105","DOI":"10.1016\/j.nedt.2003.10.001","article-title":"Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness","volume":"24","author":"Graneheim U","year":"2004","journal-title":"Nurse Educ Today"},{"key":"ref28","doi-asserted-by":"crossref","first-page":"50","DOI":"10.1186\/1477-7525-2-50","article-title":"Caring for family members with chronic physical illness: a critical review of caregiver literature","volume":"2","author":"Lim JW","year":"2004","journal-title":"Health Qual Life Outcomes"},{"issue":"3","key":"ref29","doi-asserted-by":"crossref","first-page":"261","DOI":"10.1111\/j.1471-6712.2006.00403.x","article-title":"Independence\/dependence - a contradictory relationship? Life with a chronic illness","volume":"20","author":"Delmar C","year":"2006","journal-title":"Scand J Caring Sci"},{"issue":"4","key":"ref30","doi-asserted-by":"crossref","first-page":"503","DOI":"10.1177\/1074840715606244","article-title":"Eckhart Tolle&apos;s spiritual words of wisdom: Application to family nursing practice","volume":"21","author":"Wright L","year":"2015","journal-title":"J Fam Nurs"},{"issue":"3","key":"ref31","doi-asserted-by":"crossref","first-page":"142","DOI":"10.1097\/NJH.0b013e31820ce15e","article-title":"Palliative Needs of Spousal Caregivers of Patients with Heart Failure Followed at Specialized Heart Failure Centers","volume":"13","author":"Hupcey J","year":"2011","journal-title":"J Hosp Palliat Nurs"},{"issue":"7","key":"ref32","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2016-014126","article-title":"Behind the smile: qualitative study of caregivers' anguish and management responses while caring for someone living with heart failure","volume":"7","author":"Wingham J","year":"2017","journal-title":"BMJ Open"},{"issue":"1","key":"ref33","doi-asserted-by":"crossref","first-page":"21","DOI":"10.1177\/1742395314532142","article-title":"Family member accompaniment to routine medical visits is associated with better self-care in heart failure patients","volume":"11","author":"Cen\u00e9 C","year":"2014","journal-title":"Chronic Illn"},{"year":"2018","series-title":"National Policy Statement","key":"ref34"}],"container-title":["Revista Brasileira de Enfermagem"],"original-title":[],"link":[{"URL":"http:\/\/www.scielo.br\/pdf\/reben\/v72n1\/0034-7167-reben-72-01-0162.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2020,2,11]],"date-time":"2020-02-11T15:41:58Z","timestamp":1581435718000},"score":1,"resource":{"primary":{"URL":"http:\/\/www.scielo.br\/scielo.php?script=sci_arttext&pid=S0034-71672019000100162&tlng=en"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,2]]},"references-count":34,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2019,2]]}},"alternative-id":["S0034-71672019000100162"],"URL":"https:\/\/doi.org\/10.1590\/0034-7167-2018-0645","relation":{},"ISSN":["1984-0446","0034-7167"],"issn-type":[{"type":"electronic","value":"1984-0446"},{"type":"print","value":"0034-7167"}],"subject":[],"published":{"date-parts":[[2019,2]]}}}