| 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, 1965-, et al.
(författare)
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A comparison of the concept of patient participation and patients' descriptions as related to healthcare definitions
- 2010
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Ingår i: International Journal of Nursing Terminologies and Classifications. - Malden, USA : Wiley-Blackwell. - 2047-3087 .- 2047-3095 .- 1744-618X. ; 21:1, s. 21-32
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To depict what patients describe as patient participation and whether descriptions of patient participation are affected by gender, age, healthcare contact, and duration of disease.Data sources: Current patients (n= 362) responded to a questionnaire on participation.Data synthesis: Patients' descriptions focused on having knowledge, rather than being informed, and on interacting with health professionals, rather than merely partaking in decision making.Conclusions: Patients' descriptions of participation correspond with the International Classification of Functioning, Disability and Health's definition, which includes "being involved in a life situation." Healthcare legislation and professionals employ a narrower concept of patient participation as defined by, e.g., Medical Subject Headings.Practice implications: Findings suggest that health professionals need to embrace what patients describe as participation.
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| 3. |
- Flam, B, et al.
(författare)
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Authors' Response
- 2015
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Ingår i: Journal of intensive care medicine. - : SAGE Publications. - 1525-1489 .- 0885-0666. ; 52:1, s. 493-4
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)
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| 4. |
- Öhlen, Joakim, 1958-, et al.
(författare)
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Conceptual development of "at-homeness'' despite illness and disease : A review
- 2014
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Informa UK Limited. - 1748-2623 .- 1748-2631. ; 9
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Forskningsöversikt (refereegranskat)abstract
- Only one empirical study, the one by Zingmark, Norberg and Sandman published in 1995, explicitly focuses on at-homeness, the feeling of being metaphorically at-home, as a particular aspect of wellness. However, other studies reveal aspects of at-homeness, but if or how such aspects of at-homeness are related to each other is unclear. For this reason, the aim was to review Scandinavian nursing research related to at-homeness in the context of wellness-illness in severe and long-term conditions in order to take a step towards conceptual clarification of "at-homeness.'' The review included interpretive studies related to severe and long-term illness conducted in Sweden: 10 original articles and 5 doctoral theses. "At-homeness'' was found to be a contextually related meaning of wellness despite illness and disease embedded in the continuum of being metaphorically at-home and metaphorically homeless. This was characterized by three interrelated aspects and four processes: being safe through expanding-limiting experiences of illness and time, being connected through reunifying-detaching ways of relating, and being centred through recognition-non-recognition of oneself in the experience and others giving-withdrawing a place for oneself. This conceptualization is to be regarded as a step in conceptual clarification. Further empirical investigation and theoretical development of "at-homeness'' are needed. The conceptualization will be a step of plausible significance for the evaluation of interventions aimed at enhancing wellness for people with severe long-term illness, such as the frail elderly, and people with chronic illness or palliative care needs.
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| 5. |
- Ekman, Inger, 1952, et al.
(författare)
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Person-centered care -ready for prime time.
- 2011
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Ingår i: European Journal of Cardiovascular Nursing. - : Sage Publications. - 1474-5151 .- 1873-1953. ; 10:4, s. 248-251
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Tidskriftsartikel (refereegranskat)abstract
- Long-term diseases are today the leading cause of mortality worldwide and are estimated to be the leading cause of disability by 2020. Person-centered care (PCC) has been shown to advance concordance between care provider and patient on treatment plans, improve health outcomes and increase patient satisfaction. Yet, despite these and other documented benefits, there are a variety of significant challenges to putting PCC into clinical practice. Although care providers today broadly acknowledge PCC to be an important part of care, in our experience we must establish routines that initiate, integrate, and safeguard PCC in daily clinical practice to ensure that PCC is systematically and consistently practiced, i.e. not just when we feel we have time for it. In this paper, we propose a few simple routines to facilitate and safeguard the transition to PCC. We believe that if conscientiously and systematically applied, they will help to make PCC the focus and mainstay of care in long-term illness.
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| 6. |
- 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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| 7. |
- 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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| 8. |
- 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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| 9. |
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| 10. |
- Berghammer, Malin, 1970-, et al.
(författare)
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Committed to Life : Adolescents’ and Young Adults’ Experiences of Living with Fontan Circulation
- 2015
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Ingår i: Congenital Heart Disease. - : Computers, Materials and Continua (Tech Science Press). - 1747-079X .- 1747-0803. ; 10:5, s. 403-412
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Tidskriftsartikel (refereegranskat)abstract
- Background Single ventricle defects are among the most complex congenital heart defects and the development of advanced surgical procedures in recent decades has created the first generation of adolescents and young adults living with this condition. Yet little is known about how these individuals experience life and what impact the heart defect has on their life in general. Objective The aim was to illuminate and gain a deeper understanding of adolescents’ and young adults’ experiences of living with a surgically palliated univentricular heart. Design Seven open-ended in-depth interviews were conducted, transcribed, and analyzed according to the henomenological hermeneutical method. All adolescents and young adults operated before 1995 according to the Fontan procedure or the total cavo-pulmonary connection procedure at one pediatric cardiology unit were included in the study. They were 17–32 years of age (median age 22 years). Results The interpretation of the interview transcripts showed that the participants experienced living with a surgically palliated univentricular heart in terms of feeling exceptional, strong, and healthy. This was supported by two structural analyses, where three themes emerged: happiness over being me, focusing on possibilities, and being committed to life. Conclusion Living with a Fontan circulation included negative experiences but the analyses clearly demonstrated a feeling of being strong and healthy. An appreciation of having survived and being committed to life was found to be an integral part of the development of the interviewees’ existential growth. This probably strengthens them further in their ability to balance expectations and hurdles in life. This study provides valuable insights into the experience of patients after the Fontan procedure and the importance of a positive health care environment throughout their lives.
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