| 1. |
- 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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| 2. |
- Carlsson, Tommy, et al.
(författare)
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Experiences and preferences of care among Swedish immigrants following a prenatal diagnosis of congenital heart defect in the fetus : a qualitative interview study
- 2016
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Ingår i: BMC Pregnancy and Childbirth. - : Springer Science and Business Media LLC. - 1471-2393 .- 1471-2393. ; 16:130
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Immigrants experience significant challenges when in contact with healthcare and report less satisfaction with maternity care compared to native Swedes. Research that gives voice to pregnant immigrant women and their partners following a prenatal diagnosis of a fetal anomaly is scarce. Thus, the aim of this study was to explore experiences and preferences of care following a prenatal diagnosis of congenital heart defect among Swedish immigrants.METHODS: Pregnant immigrants and their partners were consecutively recruited following a prenatal diagnosis of a congenital heart defect in the fetus. Nine respondents were interviewed in five interviews, four with the aid of a professional interpreter. The material was analyzed using manifest qualitative content analysis.RESULTS: The analysis resulted in five categories: 1) "Trustworthy information", 2) "Language barriers", 3) "Psychosocial situation", 4) "Peer support", and 5) "Religious positions".CONCLUSION: The potential need for interpreter services, visual information, psychosocial support, coordination with welfare officers, and respect for religious positions about termination of pregnancy are all important aspects for health professionals to consider when consulting immigrants faced with a prenatal diagnosis of fetal anomaly in the fetus. Peer support within this context needs to be further explored in future studies.
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| 3. |
- Cleeve, Helena, et al.
(författare)
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Not just things : the roles of objects at the end of life
- 2018
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Ingår i: Sociology of Health and Illness. - : John Wiley & Sons. - 0141-9889 .- 1467-9566. ; 40:4, s. 735-749
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Tidskriftsartikel (refereegranskat)abstract
- While the study of objects in care contexts is an emerging research field, it is largely overlooked in end of life (EoL) care. In this study, we empirically and inductively explore the roles of objects at the EoL from the perspective of bereaved family members. Open individual interviews were conducted with 25 family members recruited from palliative in-patient and homecare units, as well as residential care facilities. After verbatim transcription, the interviews were analysed thematically. Based on these interviews, we conceptualise the roles of objects as relating to temporality, transformations of the everyday, and care. Through analysis we offer two main insights, the first relating to interdependency between objects and people, and the second to the recognition of objects as simultaneously flexible and stable in this interdependent relationship. The capacity and challenge of objects as part of EoL care lies in their ability to encompass various viewpoints and relationships simultaneously. This might provide valuable insights for staff caring for dying persons and their families. We propose that staff's ability to navigate objects in care practices could be meaningful in supporting the relationships between individuals in EoL situations.
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| 4. |
- Cronfalk, Berit Seiger, et al.
(författare)
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They are still the same : family members’ stories about their relatives with dementia disorders as residents in a nursing home
- 2018
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 32:1, s. 168-176
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Tidskriftsartikel (refereegranskat)abstract
- In order to better understand the context of suffering from dementia disorders, greater efforts should be made to understand and identify what persons with such disorders experience when living in a nursing home. The aim of this qualitative study was to gain further understanding of how persons with dementia disorders experienced and coped with their changed life situation after being relocated to a nursing home as described by their family members’ perceptions. Qualitative data were collected from ten interviews with family members and evaluated using content analysis. The main findings suggest that residents with dementia disorders largely maintained their personality intact throughout the trajectory of illness as they were able to keep their habits and interests. The local environment of the nursing home and the residents’ relationships to staff were important in order to feel accepted. Four categories were discerned during the analysis: living in limbo; coming to peace; keeping old habits and relationships; and thoughts about impending death. It is reasonable to believe that old habits and interests may be preserved as the embodiment of such habits are deeply rooted and connected to a person′s identity even when going through various changes and transitions in life. Therefore, to be accepted as the person you are requires care and services to specific needs, i.e. person-centeredness. Lack of understanding from staff may therefore have an adverse effect on a person's self-respect and identity. For that reason, staff needs to reflect on their attitudes and relationships as well as extending their knowledge about how to address sensitive topics such as the residents′ impending death. To achieve this support from managers is pivotal. Future research should focus on support to nursing staff to further knowledge and understanding about the individual changes resident go through near the end of life.
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| 5. |
- Fischer Grönlund, Catarina, et al.
(författare)
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Ethically difficult situations in hemodialysis care : nurses' narratives
- 2015
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Ingår i: Nursing Ethics. - : Sage Publications. - 0969-7330 .- 1477-0989. ; 22:6, s. 711-722
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Providing nursing care for patients with end-stage renal disease entails dealing with existential issues which may sometimes lead not only to ethical problems but also conflicts within the team. A previous study shows that physicians felt irresolute, torn and unconfirmed when ethical dilemmas arose.RESEARCH QUESTION: This study, conducted in the same dialysis care unit, aimed to illuminate registered nurses' experiences of being in ethically difficult situations that give rise to a troubled conscience.RESEARCH DESIGN: This study has a phenomenological hermeneutic approach.PARTICIPANTS: Narrative interviews were carried out with 10 registered nurses working in dialysis care.ETHICAL CONSIDERATIONS: The study was approved by the Ethics Committee of the Faculty of Medicine, Umeå University.RESULTS: One theme, 'Calling for a deliberative dialogue', and six sub-themes emerged: 'Dealing with patients' ambiguity', 'Responding to patients' reluctance', 'Acting against patients' will', 'Acting against one's moral convictions', 'Lacking involvement with patients and relatives' and 'Being trapped in feelings of guilt'.DISCUSSION: In ethically difficult situations, the registered nurses tried, but failed, to open up a dialogue with the physicians about ethical concerns and their uncertainty. They felt alone, uncertain and sometimes had to act against their conscience.CONCLUSION: In ethical dilemmas, personal and professional integrity is at stake. Mistrusting their own moral integrity may turn professionals from moral actors into victims of circumstances. To counteract such a risk, professionals and patients need to continuously deliberate on their feelings, views and experiences, in an atmosphere of togetherness and trust.
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| 6. |
- Fischer Grönlund, Catarina, et al.
(författare)
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Managing Ethical Difficulties in Healthcare : Communicating in Inter-professional Clinical Ethics Support Sessions
- 2016
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Ingår i: HEC Forum. - : Springer Science and Business Media LLC. - 0956-2737 .- 1572-8498. ; 28:4, s. 321-338
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Tidskriftsartikel (refereegranskat)abstract
- Several studies show that healthcare professionals need to communicate inter-professionally in order to manage ethical difficulties. A model of clinical ethics support (CES) inspired by Habermas' theory of discourse ethics has been developed by our research group. In this version of CES sessions healthcare professionals meet inter-professionally to communicate and reflect on ethical difficulties in a cooperative manner with the aim of reaching communicative agreement or reflective consensus. In order to understand the course of action during CES, the aim of this study was to describe the communication of value conflicts during a series of inter-professional CES sessions. Ten audio- and video-recorded CES sessions were conducted over eight months and were analyzed by using the video analysis tool Transana and qualitative content analysis. The results showed that during the CES sessions the professionals as a group moved through the following five phases: a value conflict expressed as feelings of frustration, sharing disempowerment and helplessness, the revelation of the value conflict, enhancing realistic expectations, seeing opportunities to change the situation instead of obstacles. In the course of CES, the professionals moved from an individual interpretation of the situation to a common, new understanding and then to a change in approach. An open and permissive communication climate meant that the professionals dared to expose themselves, share their feelings, face their own emotions, and eventually arrive at a mutual shared reality. The value conflict was not only revealed but also resolved.
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| 7. |
- Hedman, Ragnhild, et al.
(författare)
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Expressed Sense of Self by People With Alzheimer’s Disease in a Support Group Interpreted in Terms of Agency and Communion
- 2016
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Ingår i: Journal of Applied Gerontology. - : SAGE Publications. - 0733-4648 .- 1552-4523. ; 35:4, s. 421-443
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Tidskriftsartikel (refereegranskat)abstract
- The self is constructed in cooperation with other people and social context influences how people perceive and express it. People with Alzheimer’s disease (AD) often receive insufficient support in constructing their preferred selves, but little is known about how they express themselves together with other people with AD. In accordance with Harré’s social constructionist theory of self, this study aimed to describe how five people with mild and moderate AD express their Self 2 (i.e., their personal attributes and life histories) in a support group with a facilitator experienced in communicating with people with AD. The participants’ expressions of their Self 2 were analyzed with qualitative abductive content analysis and interpreted in terms of agency and communion and a lack of agency and communion. The findings highlight the importance of supporting a sense of agency and communion when assisting people with AD in constructing their self.
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| 8. |
- Hedman, Ragnhild, 1962-, et al.
(författare)
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Sense of Self in Alzheimer’s Research Participants
- 2018
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Ingår i: Clinical Nursing Research. - : SAGE Publications. - 1054-7738 .- 1552-3799. ; 27:2, s. 191-212
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Tidskriftsartikel (refereegranskat)abstract
- The sense of self is vulnerable in people with Alzheimer's disease (AD), and might be positively and negatively influenced by research participation. The purpose of this study was to describe how people with AD express their experience of being a research participant with respect to their sense of self. Interviews and support group conversations involving 13 people with mild and moderate AD were analyzed using qualitative content analysis. Three themes were constructed: contributing to an important cause, gaining from participating, and experiencing risks and drawbacks. Participants described contributing to research as being in line with their lifelong values and lifestyles. They expressed contentment and pride about being research participants, emphasized their positive relationships with the researchers, and described participation as a meaningful activity. When research procedures threatened their sense of self, they were able to reason about risks and decline participation.
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| 9. |
- Holm, Maja, et al.
(författare)
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Quality of life in men with metastatic prostate cancer in their final years before death : a retrospective analysis of prospective data
- 2018
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Ingår i: BMC Palliative Care. - : BMC. - 1472-684X. ; 17
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Tidskriftsartikel (refereegranskat)abstract
- Background: Quality of Life (QoL) is the most important outcome for patients in palliative care along with symptom alleviation. Metastatic prostate cancer (mPC) is a life-threatening illness, and hence, a palliative care approach may be beneficial to this group. Over time, new life-prolonging treatments have been developed for men with mPC, but the possibility to prolong life should also be balanced against the men’s QoL, particularly because there are side effects involved with these treatments. The aim of this study was to evaluate QoL, functioning and symptoms in men with mPC during their final years before death.Methods: This is a retrospective analysis of data from a long-term prospective study of men (n = 3885) with prostate cancer from two regions in Sweden. Validated questionnaires asking about participants’ QoL, functioning and symptoms were used to collect data. From the overall study, 190 men with mPC were identified. They were stratified into three groups, depending on the amount of time that had passed between the last questionnaire and their death; < 6 months, 6–18 months and > 18 months before death.Results: Men with mPC generally rated their QoL poorly compared to established clinically significant threshold values. The group of men that were < 6 months before death rated their QoL, functioning and several symptoms significantly worse than the two other groups. Men that died after the year 2006 reported lower QoL and functioning and more pain and fatigue than those who died before 2006.Conclusion: The results in this study indicate that men with mPC have unmet needs with regards to QoL and symptoms. A palliative care approach, alongside possible life-prolonging treatments, that focuses on QoL and symptom relief, may serve as an important frame to give the best support to these men in their final years of life.
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| 10. |
- Kneck, Åsa, 1973-, et al.
(författare)
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Encumbered by vulnerability and temporality : the meanings of trigger situations when learning to live with diabetes
- 2016
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 25:19-20, s. 2874-2883
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Tidskriftsartikel (refereegranskat)abstract
- AIMS AND OBJECTIVES: The aim of the study was to illuminate the meanings of trigger situations experienced in everyday life when learning to live with diabetes.BACKGROUND: Adults become active learners when faced with situations they do not know how to manage, triggering a need to understand something in a different way than before. Knowing more about experiential learning for persons living with diabetes is important for understanding how learning can be supported by health care.DESIGN: A life-world approach with a phenomenological hermeneutical method, inspired by the philosophy of Paul Ricoeur.METHODS: This method was used for interpreting transcriptions of interviews and consists of three stages: naïve understanding, structural analysis and a comprehensive understanding. Participants (n = 13), with either type I or type II diabetes, were interviewed on three different occasions over a three-year period after being diagnosed with diabetes.RESULTS: When learning to live with diabetes, the meanings of trigger situations were described as 'the unpredictable body heightens insecurity with awareness of one's own dependability', 'losing control in unsustainable situations' and 'encumbered by vulnerability and temporality in earlier familiar situations'.CONCLUSION:The meanings of trigger situations were to lose the smooth, unreflected way of managing an everyday life situation, interlaced with feelings of lost control of how to live with new insights of being vulnerable. Trigger situations meant an opportunity for learning, as well as being demanding, unplanned and with limited freedom of choice. Trigger situations presented life and body as unpredictable.RELEVANCE TO CLINICAL PRACTICE: If healthcare professionals can identify the worries and questions raised in trigger situations, knowledge gaps can be identified and reflected on to stimulate learning.
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