| 1. |
- Alvariza, Anette, et al.
(author)
-
Family members' experiences of integrated palliative advanced home and heart failure care : a qualitative study of the PREFER intervention
- 2018
-
In: Palliative & Supportive Care. - New York : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 16:3, s. 278-285
-
Journal article (peer-reviewed)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. |
- Alvariza, Anette, et al.
(author)
-
How to support teenagers who are losing a parent to cancer : Bereaved young adults' advice to healthcare professionals-A nationwide survey
- 2017
-
In: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 15:3, s. 313-319
-
Journal article (peer-reviewed)abstract
- Objective: The loss of a parent to cancer is considered one of the most traumatic events a teenager can experience. Studies have shown that teenagers, from the time of diagnosis, are already extremely worried about the consequences of a parent's cancer but tend to be left to manage these concerns on their own. The present study aimed to explore young adults' advice to healthcare professionals on how to support teenagers who are losing a parent to cancer. Methods: This work derives from a Swedish nationwide survey and employs a qualitative approach with a descriptive/interpretive design to obtain answers to an open-ended question concerning advice to healthcare professionals. Of the 851 eligible young adults who had lost a parent to cancer when they were 13-16 years of age within the previous 6 to 9 years, 622 participated in our survey (response rate = 73%). Of these 622 young adults, 481 responded to the open-ended question about what advice to give healthcare professionals. Results: Four themes emerged: (1) to be seen and acknowledged; (2) to understand and prepare for illness, treatment, and the impending death; (3) to spend time with the ill parent, and (4) to receive support tailored to the individual teenager's needs. Significance of Results: This nationwide study contributes hands-on suggestions to healthcare staff regarding attitudes, communication, and support from the perspective of young adults who, in their teenage years, lost a parent to cancer. Teenagers may feel better supported during a parent's illness if healthcare professionals take this manageable advice forward into practice and see each teenager as individuals; explain the disease, its treatments, and consequences; encourage teenagers to spend time with their ill parent; and recommend sources of support.
|
|
| 3. |
- Beck, Ingela, 1965-, et al.
(author)
-
Applying a palliative care approach in residential care : effects on nurse assistants' work situation
- 2015
-
In: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 13:3, s. 543-553
-
Journal article (peer-reviewed)abstract
- Objectives: The aim was to investigate the effects of an intervention that applies a palliative care approach in residential care upon nurse assistants' level of strain, job satisfaction, and view of leadership.Method: A quasi-experimental, pretest and posttest design was used. Study circles with workshops involving nurse assistants (n = 75) and their superiors (n = 9) focusing on emotional and existential issues in palliative care were evaluated using a questionnaire answered by the nurse assistants at baseline (November 2009), post-intervention (May 2010), and six-month follow-up (November 2010) in comparison with controls (n = 110).Results: Directly after the intervention, the job satisfaction of the nurse assistants decreased and they perceived the leadership more negatively than before the intervention. Six months later, strain as a result of criticism from residents and their superiors and having difficulty in balancing emotional involvement had decreased.Significance of results: The intervention initially seemed to decrease the well-being of the nurse assistants, which could be the result of their increased awareness of the residents' and relatives' needs, in combination with limited support. More emphasis should be placed on the role of leadership when implementing changes in practice.
|
|
| 4. |
- Eilegård Wallin, Alexandra, 1975-, et al.
(author)
-
Insufficient communication and anxiety in cancer-bereaved siblings : a nationwide long-term follow-up
- 2016
-
In: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; October, s. 488-494
-
Journal article (peer-reviewed)abstract
- Objective: The purpose of this study was to examine siblings’ long-term psychological health in relation to their perception of communication with their family, friends, and healthcare professionals during a brother or sister's last month of life.Method: A nationwide questionnaire study was conducted during 2009 in Sweden of individuals who had lost a brother or sister to cancer within the previous two to nine years. Of the 240 siblings contacted, 174 (73%), participated. The Hospital Anxiety and Depression Scale (HADS) was employed to assess psychological health (anxiety). The data are presented as proportions (%) and relative risks (RR) with a 95% confidence interval (CI 95%).Results: Siblings who were not satisfied with the amount they talked about their feelings with others during their brother or sister's last month of life were more likely to report anxiety (15/58, 26%) than those who were satisfied (13/115, 11%; RR = 2.3(1.2–4.5)). The same was true for those who had been unable to talk to their family after bereavement (RR = 2.5(1.3–4.8)). Avoiding healthcare professionals for fear of being in their way increased siblings’ risk of reporting anxiety at follow-up (RR = 2.2(1.1–4.6)), especially avoidance in the hospital setting (RR = 6.7(2.5–18.2)). No such differences were seen when the ill brother or sister was cared for at home.Significance of results: Long-term anxiety in bereaved siblings might be due to insufficient communication. Avoiding healthcare professionals, especially when the brother or sister is cared for at the hospital, may also increase the risk of anxiety.
|
|
| 5. |
- Eilegård Wallin, Alexandra, 1975-, et al.
(author)
-
Insufficient communication and anxiety in cancer-bereaved siblings : A nationwide long-term follow-up
- 2016
-
In: Palliative & Supportive Care. - Cambridge : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 14:5, s. 488-494
-
Journal article (peer-reviewed)abstract
- Objective: The purpose of this study was to examine siblings' long-term psychological health in relation to their perception of communication with their family, friends, and healthcare professionals during a brother or sister's last month of life.Method: A nationwide questionnaire study was conducted during 2009 in Sweden of individuals who had lost a brother or sister to cancer within the previous two to nine years. Of the 240 siblings contacted, 174 (73%), participated. The Hospital Anxiety and Depression Scale (HADS) was employed to assess psychological health (anxiety). The data are presented as proportions (%) and relative risks (RR) with a 95% confidence interval (CI 95%).Results: Siblings who were not satisfied with the amount they talked about their feelings with others during their brother or sister's last month of life were more likely to report anxiety (15/58, 26%) than those who were satisfied (13/115, 11%; RR = 2.3(1.2-4.5)). The same was true for those who had been unable to talk to their family after bereavement (RR = 2.5(1.3-4.8)). Avoiding healthcare professionals for fear of being in their way increased siblings' risk of reporting anxiety at follow-up (RR = 2.2(1.1-4.6)), especially avoidance in the hospital setting (RR = 6.7(2.5-18.2)). No such differences were seen when the ill brother or sister was cared for at home.Significance of results: Long-term anxiety in bereaved siblings might be due to insufficient communication. Avoiding healthcare professionals, especially when the brother or sister is cared for at the hospital, may also increase the risk of anxiety.
|
|
| 6. |
- Eilertsen, Mary-Elizabeth Bradley, et al.
(author)
-
Cancer-bereaved siblings' positive and negative memories and experiences of illness and death : A nationwide follow-up.
- 2018
-
In: Palliative & Supportive Care. - Cambridge : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 16:4, s. 406-413
-
Journal article (peer-reviewed)abstract
- OBJECTIVE: Our aim was to explore bereaved siblings' positive and negative memories and experiences of their brother's or sister's illness and death.METHOD: In our nationwide Swedish study, 174 of 240 (73%) bereaved siblings participated, and 70% responded to two open-ended statements, which focused on siblings' positive and negative memories and experiences of illness and death. The data were analyzed using systematic text condensation.RESULTS: The bereaved siblings' responses were categorized into four different themes: (1) endurance versus vulnerability, (2) family cohesion versus family conflicts, (3) growth versus stagnation, and (4) professional support versus lack of professional support. The first theme expressed endurance as the influence that the ill siblings' strong willpower, good mood, and stamina in their difficult situation had on healthy siblings, whereas vulnerability was expressed as the feeling of emptiness and loneliness involved with having an ill and dying sibling. In the second theme, family cohesion was expressed as the bonds being strengthened between family members, whereas family conflicts often led siblings to feel invisible and unacknowledged. In the third theme, most siblings expressed the feeling that they grew as individuals in the process of their brother's or sister's illness and death, whereas others experienced stagnation because of the physical and mental distress they bore throughout this time, often feeling forgotten. In the last theme-professional support-most siblings perceived physicians and staff at the hospital as being warm, kind, and honest, while some siblings had negative experiences.SIGNIFICANCE OF RESULTS: The study shows that bereaved siblings can have positive memories and experiences. The significance of the positive buffering effect on bereaved siblings' own endurance, personal growth, family cohesion, and social support should be noted. This knowledge can be valuable in showing healthcare professionals the importance of supporting the siblings of children with cancer throughout the cancer trajectory and afterwards into bereavement.
|
|
| 7. |
- Ek, Kristina, et al.
(author)
-
“The unpredictable death” : The last year of life for patients with advanced COPD: Relatives’ stories
- 2015
-
In: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 13:5, s. 1213-1222
-
Journal article (peer-reviewed)abstract
- Objective: The end stage of chronic obstructive pulmonary disease (COPD) is described as prolonged, and the symptom burden for patients with COPD is often high. It progresses slowly over several years and can be punctuated by abrupt exacerbations that sometimes end in sudden death or a recovery of longer or shorter duration. This makes it difficult to identify the critical junctures in order to prognosticate the progress and time of death. Patients with COPD often express a fear that the dying process is going to be difficult. There is a fear that the dyspnea will worsen and lead to death by suffocation. The present article aimed to retrospectively describe the final year of life for patients with advanced COPD with a focus on death and dying from the perspective of relatives.Method: Interviews were conducted with the relatives of deceased family members who had advanced COPD. In total, 13 interviews were conducted and analyzed by means of content analysis.Result: All relatives described the patients as having had a peaceful death that did not correspond with the worry expressed earlier by both the patients and themselves. During the final week of life, two different patterns in the progress of the illness trajectory emerged: a temporary improvement where death was unexpected and a continued deterioration where death was inevitable.Significance of Results: The patients and their relatives lived with uncertainty up until the time of death. Little support for psychosocial and existential needs was available. It is essential for the nurse to create relationships with patients and relatives that enable them to talk about dying and death on their own terms.
|
|
| 8. |
- Eriksson, Gerd, et al.
(author)
-
The need for palliative care education, support and reflection among rural nurses and other staff – A quantitative study
- 2015
-
In: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 13:2, s. 265-274
-
Journal article (peer-reviewed)abstract
- Objective: Many people now die in community care, and, considering the aging population, all healthcare staff members must be prepared to provide palliative care. Our objectives were to describe the total staff working in different care organizations in a rural community in Sweden and to explore palliative care competence, to describe educational gaps and the need for support and reflection, and to determine whether there are differences in care organizations, professions, age, and gender.Method: A 4-section 20-item questionnaire was distributed to 1686 staff (65% response rate): in nursing homes (n = 395), home care (n = 240), and group residential settings (n = 365). Registered nurses (n = 70), assistant nurses (n = 916), managers (n = 43), and paramedics (n = 33) participated. Descriptive and correlational statistics were employed.Results: Significant differences were found, and 40% (53% among men) lacked palliative care education, Fewer than 50% lacked education in the spiritual/existential areas, and 75% of those aged 20–66 (75% women, 55% men) needed further education. More women than men and staff aged 50–59 had an increased need to reflect.Significance of Results: Our study may provide guidance for managers in rural communities when planning educational interventions in palliative care for healthcare staff and may support direct education with content for specific professions.
|
|
| 9. |
- Eriksson, Lina, et al.
(author)
-
The meaning of occupation for patients in palliative care when in hospital
- 2016
-
In: Palliative & Supportive Care. - : Oxford University Press. - 1478-9515 .- 1478-9523. ; 14:5, s. 541-552
-
Journal article (peer-reviewed)abstract
- The aim of this study was to describe how patients in palliative care relate to occupation during hospitalization and to define the meaning it has for them. Eight inpatients in palliative care with various cancer diagnoses were interviewed one time. These interviews were transcribed and analyzed using qualitative content analysis. Patients experience occupations as meaningful when in hospital during the last period of their lives. They would like to be able to handle their own needs as much as possible. Staff behavior, the design of the environment, the lack of accessible occupations, and the degree to which patients can decide whether to receive or decline visits affect the possibility to make their wishes a reality. Our results also revealed that patients experience a sense of loss of their role, as well as a lack of control and participation. Our results confirm the importance of occupation and of patients having the option to and being given opportunities to take care of themselves when in palliative care. Further studies are needed to enable us to understand how organized occupations might influence patients' experience of being in a hospital during the final period of life.
|
|
| 10. |
- Friberg, Febe, 1950, et al.
(author)
-
Communicating bodily changes : Physicians' ways of enabling patient understanding in gastrointestinal cancer consultations
- 2015
-
In: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 13:03, s. 661-671
-
Journal article (peer-reviewed)abstract
- Objective: To explore how physicians communicatively enable patients' understanding of bodily changes in gastrointestinal cancer care consultations.Method: Two datasets were used. The first consisted of transcribed video-recorded palliative care consultations with three oncologists and six patients diagnosed with advanced gastrointestinal cancer, in the context of outpatient palliative care. The second dataset was audio-recorded transcriptions from diagnostic consultations with six surgeons and seven patients diagnosed with colorectal cancer, in the context of cancer surgery. An inductively driven and iterative analysis of interaction was performed, guided by Wetherell et al. (2001).Results: Two overarching communicative strategies were identified: (1) “visualizing strategies,” with the dimensions: visible strategies (visualizing with what you actually or potentially can see), sensory strategies (visualizing with what is possible to feel), and imaginative strategies; and (2) “contrasting strategies,” with the dimensions: contrasting subjective experiences and contrasting between the patient and other people.Significance of results: The visualizing and contrasting communicative strategies form parts of physicians' tacit and experience-based knowledge. The strategies employed by physicians reveal clear potentials to enable patients' understanding and sense making of bodily changes. However, these strategies need to be explicated and problematized as parts of both consultation practice and basic medical education. By means of increased awareness, physicians can more easily identify turning points in patients' levels of understanding, thereby enriching ordinary medical consultations with reflected pedagogical strategies and skills in how to dialogue in a person-centered manner.
|
|
