| 1. |
- Alvariza, Anette, et al.
(författare)
-
Family members' experiences of integrated palliative advanced home and heart failure care : a qualitative study of the PREFER intervention
- 2018
-
Ingår i: Palliative & Supportive Care. - New York : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 16:3, s. 278-285
-
Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Chronic heart failure is a disease with high morbidity and symptom burden for patients, and it also places great demands on family members. Patients with heart failure should have access to palliative care for the purpose of improving quality of life for both patients and their families. In the PREFER randomized controlled intervention, patients with New York Heart Association classes III-IV heart failure received person-centered care with a multidisciplinary approach involving collaboration between specialists in palliative and heart failure care. The aim of the present study was to describe family members' experiences of the intervention, which integrated palliative advanced home and heart failure care.METHOD: This study had a qualitative descriptive design based on family member interviews. Altogether, 14 family members participated in semistructured interviews for evaluation after intervention completion. The data were analyzed by means of content analysis.RESULTS: Family members expressed gratitude and happiness after witnessing the patient feeling better due to symptom relief and empowerment. They also felt relieved and less worried, as they were reassured that the patient was being cared for properly and that their own responsibility for care was shared with healthcare professionals. However, some family members also felt as though they were living in the shadow of severe illness, without receiving any support for themselves.SIGNIFICANCE OF RESULTS: Several benefits were found for family members from the PREFER intervention, and our results indicate the significance of integrated palliative advanced home and heart failure care. However, in order to improve this intervention, psychosocial professionals should be included on the intervention team and should contribute by paying closer attention and providing targeted support for family members.
|
|
| 2. |
- Benzein, Eva, et al.
(författare)
-
Familj och sociala relationer.
- 2009
-
Ingår i: Omvårdnadens grunder. - Lund : Studentlitteratur AB. - 9789144049069 ; , s. 65-84
-
Bokkapitel (övrigt vetenskapligt/konstnärligt)
|
|
| 3. |
- Holmberg, Bodil, 1970-, et al.
(författare)
-
Assenting to exposedness : meanings of receiving assisted bodily care in a nursing home as narrated by older persons
- 2019
-
Ingår i: Scandinavian Journal of Caring Sciences. - : John Wiley & Sons. - 0283-9318 .- 1471-6712. ; 33:4, s. 868-877
-
Tidskriftsartikel (refereegranskat)abstract
- Most older persons moving to a nursing home need to receive assisted bodily care, which means being in a position of vulnerability. However, few studies have explicitly focused on the meanings of receiving assisted bodily care from the older persons' perspective. This study aimed to elucidate meanings of receiving assisted bodily care, as narrated by older persons living in a nursing home. Twelve men and women, aged 80 or older, living in a Swedish nursing home, participated in the study. Data were generated by narrative interviews and analysed with a phenomenological-hermeneutical method. The regional ethics committee approved the study. In the analysis, one main theme emerged: 'Assenting to exposedness'. This theme comprised five themes, 'To have hope in hopelessness', 'To relinquish one's body into others' hands', 'To be between power and powerlessness', 'To oscillate between one's own responsibility and demands', 'To be in an ongoing interaction', and ten subthemes. In conclusion, receiving assisted bodily care means to be exposed, but not passively. Rather, it means to be self-determinant for as long as possible, to perceive the body as lived. When the body must be relinquished to others, it might be objectified, leading to care-suffering. To avoid this, the older persons use a certain competence, acquired through life, to decide when to take action or when to assent. However, this is but one of the several possible interpretations, which may be considered a limitation.
|
|
| 4. |
- Pusa, Susanna, et al.
(författare)
-
Nurses' perceptions about a web-based learning intervention concerning supportive family conversations in home health care
- 2019
-
Ingår i: Journal of Clinical Nursing. - : Wiley-Blackwell. - 0962-1067 .- 1365-2702. ; 28:7-8, s. 1314-1326
-
Tidskriftsartikel (refereegranskat)abstract
- Aims and objectives To describe the perceptions that municipal primary healthcare nurses and municipal registered nurses had about a web-based learning intervention concerning supportive family health conversations in municipal home health care. Background Even though family health conversations are well grounded in theory with several reported benefits for patients and families, most working nurses have little or no training in practising family systems nursing including family health conversations. Continued learning is necessary for nurses, where web-based learning may be one answer of updating the professional skills and knowledge of nurses regarding supporting families. Design The study used a descriptive design and followed the "Consolidated criteria for reporting qualitative research" (COREQ) checklist. Methods Twenty-one nurses participated in an educational intervention that consisted of web-based learning and two face-to-face seminars about family systems nursing including family health conversations. The nurses were interviewed after completion, and the audio-recorded interviews were transcribed verbatim and analysed using qualitative content analysis. Results The findings consist of nurses' perceptions regarding the disposition of instruction, the prerequisites for learning and a changed approach when working with families. The findings are further reflected on through Illeris' theory concerning learning triangle. Conclusions The findings are encouraging for educating nurses in family health conversations at their workplace, with the purpose of supporting patients and families. However, it is important to be aware of the different dimensions of learning, in addition to the appraisal of social aspects and organisational circumstances when educating nurses as they influence the utilisation of the knowledge. Relevance to clinical practice This web-based learning intervention seems to be suitable for educating nurses in family health conversations and could be an appropriate step towards implementing these conversations in home health care with the purpose of supporting families.
|
|
| 5. |
- Pusa, Susanna, et al.
(författare)
-
Significant others' lived experiences following a lung cancer trajectory : From diagnosis through and after the death of a family member
- 2012
-
Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 16:1, s. 34-41
-
Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: The purpose of this study was to illuminate the meanings of significant others' lived experiences of their situation from diagnosis through and after the death of a family member as a consequence of inoperable lung cancer. METHODS: The data was collected through narrative interviews from eleven significant others and interpreted using a phenomenological hermeneutic approach. KEYRESULTS: Four themes emerged: being unbalanced, being transitional, being cared for, and moving forward. CONCLUSION: The significant others' experiences can be viewed as a transition process, beginning with a sense of dislocation in life and continuing through struggling, enduring and conquering the consequences of the altered life situation until finally approaching a point characterized by a sense of stability. Different strategies of adjustment and adaptation to the new living conditions are considered. Furthermore, the results indicate the need to develop a framework for family-centered health care in order to enhance the wellbeing for the significant others both in the anticipatory grief phase and during the bereavement phase.
|
|
| 6. |
|
|
| 7. |
- Söderström, Ing-Mari, et al.
(författare)
-
Family adaptation in relation to a family member's stay in ICU
- 2009
-
Ingår i: Intensive & Critical Care Nursing. - : Elsevier BV. - 0964-3397 .- 1532-4036. ; 25:5, s. 250-257
-
Tidskriftsartikel (refereegranskat)abstract
- Objectives: To describe and interpret the family adaptation during the ICU hospitalisation andup to 18 months after discharge.Research methodology/design: A qualitative design was chosen.Main outcome measures: Individual and family interviews with eight families including 31 familymembers. A hermeneutical analysis was performed and paradigm cases were constructed.Results: The result is presented in three themes: striving for endurance, striving for consolationand striving to rebuild life under new conditions. The family adaptation started at the onset ofthe critical incident and continued during the ICU stay and after discharge. The family membersmetaphorically went through peaks and valleys during the whole process of adaptation.Conclusion: Adaptation is an issue for the whole family and is facilitated by being able to stayclose to the patient and receive supportive unambiguous information from the staff both duringthe ICU stay and after discharge.
|
|
| 8. |
- Årestedt, Kristofer, 1968-, et al.
(författare)
-
Palliative key aspects are of importance for symptom relief during the last week of life in patients with heart failure
- 2021
-
Ingår i: ESC Heart Failure. - : John Wiley & Sons. - 2055-5822. ; 8:3, s. 2202-2209
-
Tidskriftsartikel (refereegranskat)abstract
- Aims This study aimed to describe symptom prevalence of pain, shortness of breath, anxiety, and nausea and to identify factors associated with symptom relief in patients with heart failure during their last week of life. Methods and results This nationwide study used data from the Swedish Register of Palliative Care and the Swedish Causes of Death Certificate Register. The sample included 4215 patients with heart failure as the underlying cause of death. Descriptive statistics and logistic regression were used to analyse data. Pain was the most prevalent symptom (64.0%), followed by anxiety (45.1%), shortness of breath (28.8%), and nausea (11.4%). Pain was the most often totally relieved (77.5%), followed by anxiety (68.4%), nausea (54.7%), and shortness of breath (37.1%). Key aspects of palliative care such as documented palliative care in the patient record, individual medication prescriptions by injection, symptom assessment with validated scales, documented end-of-life discussions with patients and/or family members, and external consultation were significantly associated with symptom relief. Relief of pain, shortness of breath, anxiety, and nausea were significantly better managed in nursing homes and hospice/inpatient palliative care compared with care in hospitals. Conclusions The results show that key aspects of palliative care during the last week of life are significantly associated with symptom relief. Increased access to palliative care could provide a way to improve care during the last week of life for patients with heart failure. Home-based settings provided more symptom relief than hospitals, which may indicate that the latter focuses on treatments and saving lives rather than promoting life before death.
|
|
| 9. |
- Årestedt, Kristofer, 1968-, et al.
(författare)
-
Symptom relief and palliative care during the last week of life among patients with heart failure : a national register study
- 2018
-
Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert. - 1096-6218 .- 1557-7740. ; 21:3, s. 361-367
-
Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Heart failure is a disease with high morbidity, mortality, and physical and psychological burden. More knowledge about the care provided for patients with heart failure close to death is needed.OBJECTIVE: The aim was to describe key aspects of palliative care during the last week of life in patients with heart failure, as reported by healthcare professionals.DESIGN: This is a national register study.SETTING/SUBJECTS: The study included 3981 patients with diagnosed heart failure as the underlying cause of death.MEASUREMENTS: Data were obtained from the Swedish Register of Palliative Care, a national quality register that focuses on patients' last week of life, independent of diagnosis or care setting. The register includes information about care interventions connected with key aspects of palliative care. Data are reported retrospectively by a nurse or physician at the healthcare unit where the patient dies.RESULTS: Only 4.2% of patients with heart failure received specialized palliative care. In their last week of life, symptom prevalence was high, validated scales were seldom used, and symptoms were unsatisfactorily relieved. Around one-fifth (17%) of the patients in the study died alone. Less than half of family members had been offered bereavement support (45%). Moreover, one-third (28%) of the patients and more than half (61%) of the family members were reported to have had end-of-life discussions with a physician during the illness trajectory.CONCLUSION: The results indicate inadequate palliative care for patients with heart failure during their last week of life.
|
|
