| 1. |
- Eldh, Ann Catrine, et al.
(författare)
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Conditions for patient participation and non-participation in health care
- 2006
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Ingår i: Nursing Ethics. - Malden, USA : SAGE Publications. - 0969-7330 .- 1477-0989. ; 13:5, s. 503-514
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Tidskriftsartikel (refereegranskat)abstract
- This study explored patients' experiences of participation and non-participation in their health care. A questionnaire-based survey method was used. Content analysis showed that conditions for patient participation occurred when information was provided not by using standard procedures but based on individual needs and accompanied by explanations, when the patient was regarded as an individual, when the patient's knowledge was recognized by staff, and when the patient made decisions based on knowledge and needs, or performed self-care. Thus, to provide conditions for true patient participation, professionals need to recognize each patient's unique knowledge and respect the individual's description of his or her situation rather than just inviting the person to participate in decision making.
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| 2. |
- Eldh, Ann Catrine, et al.
(författare)
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The meaning of patient participation for patients and nurses at a nurse-led clinic for chronic heart failure
- 2006
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Ingår i: European Journal of Cardiovascular Nursing. - : Oxford University Press (OUP). - 1474-5151 .- 1873-1953. ; 5:1, s. 45-53
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundThe legislation of many Western countries emphasizes active patient participation. Patients with chronic heart failure (CHF), however, have experienced participation differently from the general interpretation of legal definitions. Education improves uptake of self-management strategies yet knowledge is lacking about support of patients' own resources in CHF. AimTo explore the phenomena of patient participation and non-participation as shown in patient visits to a nurse-led clinic for CHF and as experienced by the patients and nurses. MethodsData triangulation of field notes from participatory observations and texts from narrative interviews with the patients and assigned nurse specialists. Data were analyzed according to the phenomenological hermeneutic tradition. FindingsPatients' experience of participation and non-participation was interpreted as “Being responsible and accepting responsibility” and “Lacking an equal relationship while being controlled”, respectively. Nurses experienced patient participation as “Getting information and security to act” and patient non-participation as “Not accepting”. ConclusionConflicting values of patients and nurses, which were interpreted with respect to participation and non-participation, presumably might influence patient information and education negatively. The issue of participation should be raised as a means of attaining concordance and to facilitate patient participation with education specifically tailored to the individual patient's needs.
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| 3. |
- Eldh, Ann Catrine, et al.
(författare)
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The phenomena of participation and non-participation in health care : experiences of patients attending a nurse-led clinic for chronic heart failure
- 2004
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Ingår i: European Journal of Cardiovascular Nursing. - : Oxford University Press (OUP). - 1474-5151 .- 1873-1953. ; 3:3, s. 239-246
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Tidskriftsartikel (refereegranskat)abstract
- Background: Patient participation is stressed in the health care acts of many western countries yet a common definition of the concept is lacking. The understanding of experiences of patients with chronic heart failure (CHF) who attend nurse-led specialist clinics, a form of care suggested as beneficiary to this group, may promote a better understanding of participation. Aim: To investigate the meanings of participation and non-participation as experienced by patients living with CHF. Methods: Narrative interviews analysed in the phenomenological hermeneutic tradition inspired by Ricoeur where the interpretation is made in the hermeneutic circle, explaining and understanding the experienced phenomena. Findings: Participation was experienced as to “be confident”, “comprehend” and “seek and maintain a sense of control”. Non-participation was experienced as to “not understand”, “not be in control”, “lack a relationship” and “not be accountable”. The findings indicate that the experiences of participation and non-participation can change over time and phases of the disease and treatment. Conclusion: The study suggests an extended view on the concept of participation. Patients' experiences of participation in health care can vary and should therefore be an issue for dialogue between nurses and patients with CHF in nurse-led specialist clinics.
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| 4. |
- Eldh, Ann Catrine, et al.
(författare)
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Considering patient non-participation in health care
- 2008
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Ingår i: Health Expectations. - : Wiley. - 1369-7625 .- 1369-6513. ; 11:3, s. 263-71
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: The aim of this study was to depict patient non-participation as described by a diverse group with recent experiences of being patients. BACKGROUND: Patient participation is regarded as a primary condition for optimal quality of care, suggesting that non-participation should be avoided. A common understanding of the concept of patient non-participation is needed. A discrepancy in definitions of patient non-participation has been found in health-care interactions, health-care classifications and health-care research, and little is known of what patient non-participation represents to patients. STUDY DESIGN: A survey consisting of closed-ended and open-ended questions was administered to persons that had recently been patients to gather respondents' descriptions of what they considered as patient non-participation. Qualitative content analysis was used to analyse free-text descriptions, and descriptive statistics were used for the close-ended alternatives. FINDINGS: Lacking information (e.g. not being provided with appropriate information) and lacking recognition (e.g. not being listened to and/or lacking recognition as an individual with individual needs and concerns) were significant aspects of patient non-participation. Furthermore, non-participation encompassed facing organization-centred, as opposed to patient-centred, health care as well as feeling insecure in health care interactions. CONCLUSION: The findings provide input for a better understanding of what patients experience as non-participation. Organising for the caregivers to be able to thoroughly listen to the patients' illness narratives would easily reduce the risk of patient's experiencing what is described as non-participation and would provide a sound base for patient learning needs.
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| 5. |
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| 6. |
- Brännström, Margareta, et al.
(författare)
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Living with severe chronic heart failure in palliative advanced home care.
- 2006
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Ingår i: European Journal of Cardiovascular Nursing. - : Oxford University Press (OUP). - 1474-5151 .- 1873-1953. ; 5:4, s. 295-302
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Living with severe chronic heart failure (CHF) in palliative care has been little studied. AIM: The aim of this study is to illuminate meaning of living with severe CHF in palliative advanced home care through patients' narratives. METHODS: Narrative interviews were conducted with 4 patients, tape-recorded and transcribed verbatim. A phenomenological-hermeneutic method was used to interpret the text. RESULTS: Meaning of living with severe CHF in palliative advanced home care emerged as 'knocking on death's door' although surviving. The course of the illness forces one to live a 'roller coaster life,' with an ongoing oscillation between ups and downs. Making it through the downs breeds a kind of confidence in one's ability to survive and the will to live is strong. Being offered a safety belt in the 'roller coaster' by the palliative advanced home care team evokes feelings of security. CONCLUSIONS: Meaning of living with severe CHF in palliative advanced home care is on one hand, being aware of one's imminent death, on the other hand, making it through the downs i.e. surviving life-threatening conditions, breed confidence in also surviving the current down. Being constructively dependent on palliative advanced home care facilitates everyday life at home.
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| 7. |
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| 8. |
- Ågård, Anders, et al.
(författare)
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Views of patients with heart failure about their role in the decision to start implantable cardioverter defibrillator treatment: prescription rather than participation
- 2007
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Ingår i: Journal of medical ethics. - : BMJ. - 0306-6800 .- 1473-4257. ; 33:9, s. 514-8
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: There is a shortage of reports on what potential recipients of implantable cardioverter-defibrillators (ICDs) need to be informed about and what role they can and want to play in the decision-making process when it comes to whether or not to implant an ICD. AIMS: To explore how patients with heart failure and previous episodes of malignant arrhythmia experience and view their role in the decision to initiate ICD treatment. Patients and METHODS: A qualitative content analysis of semistructured interviews was used. The study population consisted of 31 outpatients with moderate heart failure at the time of their first ICD implantation. SETTING: The study was performed at Sahlgrenska University Hospital, Goteborg, Sweden. RESULTS: None of the respondents had discussed the alternative option of receiving treatment with anti-arrhythmic drugs, the estimated risk of a fatal arrhythmia, or the expected time of survival from heart failure in itself. Even so, very little criticism was directed at the lack of information or the lack of participation in the decision-making process. The respondents felt that they had to rely on the doctors' recommendation when it comes to such a complex and important decision. None of them regretted implantation of the ICD. CONCLUSIONS: The respondents were confronted by a matter of fact. They needed an ICD and were given an offer they could not refuse, simply because life was precious to them. Being able to give well-informed consent seemed to be a matter of less importance for them.
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| 9. |
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| 10. |
- Jaarsma, Tiny, et al.
(författare)
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Palliative care in heart failure: a position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology.
- 2009
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Ingår i: European journal of heart failure : journal of the Working Group on Heart Failure of the European Society of Cardiology. - : Wiley. - 1388-9842 .- 1879-0844. ; 11:5, s. 433-43
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Tidskriftsartikel (refereegranskat)abstract
- Heart failure is a serious condition and equivalent to malignant disease in terms of symptom burden and mortality. At this moment only a comparatively small number of heart failure patients receive specialist palliative care. Heart failure patients may have generic palliative care needs, such as refractory multifaceted symptoms, communication and decision making issues and the requirement for family support. The Advanced Heart Failure Study Group of the Heart Failure Association of the European Society of Cardiology organized a workshop to address the issue of palliative care in heart failure to increase awareness of the need for palliative care. Additional objectives included improving the accessibility and quality of palliative care for heart failure patients and promoting the development of heart failure-orientated palliative care services across Europe. This document represents a synthesis of the presentations and discussion during the workshop and describes recommendations in the area of delivery of quality care to patients and families, education, treatment coordination, research and policy.
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