| 1. |
- Ahmadi, Nasser, 1958, et al.
(författare)
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Breathlessness in everyday life from a patient perspective: A qualitative study using diaries
- 2014
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Ingår i: Palliative & supportive care. - Cambridge, United Kingdom : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 12:3, s. 189-194
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Breathlessness is a subjective symptom, which makes it difficult to define and understand. The aim of the present study was to illuminate how patients suffering from breathlessness experience their everyday life. Method: The study was a qualitative study, and the focus of the analysis was the patients’ descriptions of their experiences of breathlessness using a diary with two unstructured questions for a period of 7 consecutive days. Sixteen participants: 7men, mean age 65+7 (range 55–73 years old), and 9 women, mean age 65+9 (range 50–72 years old) participated in the study. Results: Two themes emerged from the analysis: 1) Impaired quality of life and 2) symptom tolerance and adaptation. The theme “impaired quality of life” included the categories limited physical ability, psychological burdens, and social life barriers. The theme “symptom tolerance and adaptation” included importance of health care, social support, hobbies and leisure activities, and coping strategies. Significance of results: The findings in our study showed that patients, in spite of considerable difficulties with shortness of breath, found relief in several types of activities, in addition to drug therapy. The result indicates that the “biopsychosocial model” is an appealing approach that should be discussed further to gain a better understanding of breathlessness.
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| 2. |
- Alvariza, Anette, et al.
(författare)
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Family members' experiences of integrated palliative advanced home and heart failure care : a qualitative study of the PREFER intervention
- 2018
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Ingår i: Palliative & Supportive Care. - New York : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 16:3, s. 278-285
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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.
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| 3. |
- Alvariza, Anette, et al.
(författare)
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How to support teenagers who are losing a parent to cancer : Bereaved young adults' advice to healthcare professionals-A nationwide survey
- 2017
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 15:3, s. 313-319
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Tidskriftsartikel (refereegranskat)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.
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| 4. |
- Alvariza, Anette, et al.
(författare)
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The Family Talk Intervention in palliative home care when a parent with dependent children has a life-threatening illness : A feasibility study from parents' perspectives
- 2021
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 19:2, s. 154-160
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Tidskriftsartikel (refereegranskat)abstract
- Objective One of the main goals of the Family Talk Intervention (FTI) is to increase communication within families with dependent children about illness-related consequences and to support parenting. FTI is family-centered and includes six manual-based meetings led by two interventionists. This study aims to evaluate the feasibility of the FTI in terms of acceptability from the perspective of parents in families with dependent children where one parent receives specialized palliative home care.Method A descriptive design employing mixed methods was used to evaluate the FTI in specialized palliative home care. In total, 29 parents participated in interviews and responded to a questionnaire following FTI. Qualitative content analysis and descriptive statistics were used for analyses.Results FTI responded to both the ill parent's and the healthy co-parent's expectations, and they recommended FTI to other families. Parents found the design of FTI to be well-structured and flexible according to their families' needs. Many parents reported a wish for additional meetings and would have wanted FTI to start earlier in the disease trajectory. Parents also would have wished for a more thorough briefing with the interventionists to prepare before the start. The importance of the interventionists was acknowledged by the parents; their professional competence, engagement, and support were vital for finding ways to open communication within the family. The FTI meetings provided them with a setting to share thoughts and views. Parents clearly expressed that they would never have shared thoughts and feelings in a similar way without the meetings.Significance of results According to parents, FTI was found acceptable in a palliative home care context with the potential to add valuable support for families with minor children when a parent is suffering from a life-threatening illness.
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| 5. |
- Andersson, Magdalena, et al.
(författare)
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The experience of being next of kin to an older person in the last phase of life
- 2010
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 8:1, s. 17-26
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: The aim of the study was to investigate the experience of being next of kin to an older person in the last phase of life as narrated after the older person's death.METHOD: Qualitative interviews were performed with the next of kin (n = 17) to people aged 75 years and older who had recently died and had received help and/or care from the municipality in the last phase of life. Eleven women and six men participated, of whom seven were spouses, nine were children, and one was a grandchild. The interviews were analysed using qualitative content analysis.RESULTS: The experience of the next of kin could be understood as being a devoted companion during the transition toward the inevitable end, embracing the categories of living in the shadow of death; focusing on the needs of the dying person, making adjustments to everyday life; feeling the major responsibility; struggling with the health and social care system; and gaining strength from support.SIGNIFICANCE OF RESULTS: Being next of kin to an old person at the end of life means being a devoted companion during the transition toward the inevitable end, including the feeling of bearing the major responsibility and the need to be acknowledged by professionals. This study points to the importance of having access to professional care when it is needed, to complement and support the next of kin when his or her own resources and strength falter. This also includes support to enable the next of kin to remain involved in the care of his or her loved ones, thereby fulfilling their own wishes.
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| 6. |
- Beck, Ingela, 1965-, et al.
(författare)
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Applying a palliative care approach in residential care : effects on nurse assistants' work situation
- 2015
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 13:3, s. 543-553
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Tidskriftsartikel (refereegranskat)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.
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| 7. |
- Brenne, Elisabeth, et al.
(författare)
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Depressed patients with incurable cancer : which depressive symptoms do they experience?
- 2013
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Ingår i: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 11:6, s. 491-501
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Forskningsöversikt (refereegranskat)abstract
- OBJECTIVE: Diagnosing depressive disorders in palliative care is challenging because of the overlap between some depressive symptoms and cancer-related symptoms, such as loss of appetite and fatigue. In order to improve future assessment of depression in palliative care, depressive symptoms experienced by patients receiving pharmacological treatment for depression were assessed and compared to the American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders, 4th ed. (DSM-IV) criteria for major depressive disorder.METHOD: Thirty Norwegian (n = 20) and Austrian (n = 10) patients with advanced cancer were included. Semistructured interviews on symptom experiences were conducted and transcribed verbatim. By the phenomenographic method, patients' symptom experiences were extracted and sorted by headings, first individually and then across patients. The patients subsequently rated 24 symptoms numerically including the DSM-IV depression criteria.RESULTS: Lowered mood and a diminished motivational drive were prominent and reflected the two main DSM-IV symptom criteria. A relentless focus on their actual situation, restlessness, disrupted sleep, feelings of worthlessness, feelings of guilt, and thoughts of death as a solution were variably experienced. Appetite and weight changes, fatigue and psychomotor retardation were indistinguishable from cancer symptoms. All these symptoms reflected DSM-IV symptom criteria. Some major symptoms occurred that are not present in the DSM-IV symptom criteria: despair, anxiety, and social withdrawal. The numerical ratings of symptoms were mainly in accordance with the findings from the qualitative analysis.SIGNIFICANCE OF RESULTS: Despair, anxiety, and social withdrawal are common symptoms in depressed patients with incurable cancer, and, therefore, hypothesized as candidate symptom criteria. Other symptom criteria might need adjustment for improvement of relevance in this group of patients.
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| 8. |
- Browall, Maria, 1963, et al.
(författare)
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Health care staff's opinions about existential issues among patients with cancer.
- 2010
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Ingår i: Palliative & supportive care. - : Cambridge University Press. - 1478-9523 .- 1478-9515. ; 8:1, s. 59-68
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: The objective of this study was to explore health care staff's opinions about what existential issues are important to patients with cancer and staff's responsibility when existential issues are raised by patients. METHOD: Four focus group interviews were conducted with health care staff (N = 23) at an in-patient hospice, on an oncology ward, on a surgical ward, and with a palliative home health care team. The focus group interviews focused on two questions, first, about health care staff's opinions about patients' important existential questions and, second, about health care staff's responsibility when existential issues are raised by the patient. The interviews were tape-recorded, transcribed verbatim, and analyzed by qualitative content analysis into subcategories and categories. RESULTS: Four categories and 11 subcategories emerged from the first question. The first category, "life and death," was based on joy of living and thoughts of dying. The second category "meaning," consisted of acceptance, reevaluation, hope, and faith. The third category, "freedom of choice," consisted of responsibility and integrity, and the fourth and last category, "relationships and solitude," consisted of alleviation, dependency, and loss. One category emerged from the second question about the health care staff's responsibility, "to achieve an encounter," which was based on the subcategories time and space, attitudes, and invitation and confirmation. SIGNIFICANCE OF RESULTS: The strength of this study was that the findings were fairly congruent in different settings and in different geographical areas. Health care staff were aware of the importance of existential issues to patients. The existential issues, mentioned by health care staff, are similar to findings from studies conducted among patients, which is another strength of the present study. Health care staff are also confident about how to act when these issues are raised by the patients. The challenge for the future is to implement the findings from this study among health care staff in different settings.
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| 9. |
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| 10. |
- Carlsson, Maria, 1958-, et al.
(författare)
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Bereaved spouses' adjustment after the patients' death in palliative care
- 2007
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 5:4, s. 397-404
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: To improve the support to bereaved spouses during the year after the patient’s death,a project was started consisting of three visits by a nurse (after 1, 3, and 13 months) withconversations about the patient’s death and the spouse’s life situation. The aim of this study wasto describe the bereaved spouse’s situation and adaptation during the first year after the loss. Methods: Spouses of patients cared for by The Advanced Home Care Team (APHCT) inUppsala, Sweden, were invited to participate in the project. Each participant was encouraged totalk freely about his or her situation, but enough direction was given to ensure that all itemslisted on a standardized questionnaire were covered. Results: Fifty-one spouses met the inclusion criteria and were invited to participate and 45accepted. The subjects felt quite healthy but were tired and suffered from sleep disturbance.The grief reactions had initially been high but showed a significant decline from 1 to 13 months( p , .01). Forty-nine percent had experienced postbereavement hallucinations. Significance of results: This study showed that the bereaved spouses felt quite healthy andadjusted quite well to their new life situation, after the patient’s death in a palliative care setting.The grief reactions had initially been high but showed a significant decline during the year.
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