title: An exploration of the phenomenon of formal care from the perspective of middle-aged heart failure patients.
abstract: BACKGROUND
  Despite a considerable amount of research into heart failure there remains a divergence between the care available and patient's needs. The predominant biomedical perspective is more focused on the disease rather than the patient. In order to deliver formal care appropriate to the needs of middle-aged patients with moderate-severe HF it is imperative to gain the perspective of the individual patient.
  
  
  OBJECTIVE
  The aim of the current study was to explore and understand the phenomenon: Formal care as experienced from the perspective of middle-aged patients living with HF.
  
  
  METHODS
  The study was performed using a lifeworld perspective. Data was collected in seven unstructured interviews with middle-aged people living with moderate-severe HF. Data was analysed using a phenomenological approach.
  
  
  RESULTS
  Formal care, as experienced by middle-aged patients living with moderate to severe HF, means hope to once again be able to have access to life. However, the meaning of formal care is ambiguous, which signifies that care means both health and suffering at the same time. The essence's meaning constituents are: dependency of care, surrender to care and unclear participation.
  
  
  CONCLUSIONS
  The experience of formal care means both well-being and suffering at the same time. Patients' suffering in relation to formal care can be reduced if formal carers act from an ethical patient perspective point of view and if carers regard patients' lived experiences.
authors.affiliation: Department of Caring and Public Health Sciences, Mälardalen University, 631 05 Eskilstuna, Sweden. lena.nordgren@mdh.se
authors.forename: Lena
authors.initials: L
authors.lastname: Nordgren
authors.forename: Margareta
authors.initials: M
authors.lastname: Asp
authors.forename: Ingegerd
authors.initials: I
authors.lastname: Fagerberg
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001294:Attitude to Health; D003657:Decision Making; D004645:Empathy; D005260:Female; D006301:Health Services Needs and Demand; D006333:Heart Failure / Q000517:prevention & control / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D009013:Morale; D033262:Narration; D015404:Nursing Methodology Research; D018802:Patient-Centered Care; D011209:Power, Psychological; D024382:Professional Role / Q000523:psychology; D011369:Professional-Patient Relations; D011787:Quality of Health Care / Q000592:standards; D012649:Self Concept; D012720:Severity of Illness Index; D012944:Social Support; D011795:Surveys and Questionnaires; D013548:Sweden