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| 2. |
- Doveson, Sandra, et al.
(författare)
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Facing life-prolonging treatment : The perspectives of men with advanced metastatic prostate cancer - An interview study
- 2020
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 49
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: Several life-prolonging treatment options have recently become available for metastatic castration-resistant prostate cancer. However, research regarding patient experiences while undergoing these treatments is scarce. The aim was to explore the perspectives of men when facing life-prolonging treatment of metastatic castration-resistant prostate cancer.METHOD: Qualitative interviews were conducted with 16 men as they were starting, undergoing or had completed their first life-prolonging treatment. Interpretive description was used for analysis.RESULTS: The results illuminate the complexity of facing life-prolonging treatment, with interlaced dimensions beyond just the outcome, and where the men described other dimensions of their lives in relation to the treatment. The results are presented as 4 themes; Considering treatment when the remainder of life is at stake, Preparing for the life-prolonging treatment after deciding to go through with it, Considering the prospect of the life-prolonging treatment not being successful and Reflecting on death and dying in the light of a life-limiting illness.CONCLUSIONS: The quality and content of the remainder of life are central for men when facing life-prolonging treatment of metastatic castration-resistant prostate cancer. This is important when weighing desired treatment outcomes against side effects, and when reflecting upon whether going through with treatment would be worth it or not. The results illuminate the importance of encouraging men at this stage to express expectations, hopes and fears regarding the treatment and the future when considering life-prolonging treatments. Nurses working with these patients are important in the decision-making process and in evaluating treatments, to detect needs for interventions.
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| 3. |
- Doveson, Sandra, et al.
(författare)
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Identification of early symptoms and changes in QoL and functioning among men with primary localized prostate cancer who later develop metastases : a matched, prospective study
- 2023
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 21:2, s. 230-238
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Tidskriftsartikel (refereegranskat)abstract
- Objective To identify early symptoms and changes in QoL among men with primary localized prostate cancer (PC) who later develop metastases. Methods From an ongoing prospective study of 3.885 men with localized PC, primarily treated with radiotherapy (RT), a subsample of men developing metastatic PC (mPC) following the first year after the start of RT and that had died during the follow-up (mPC group, n = 107) were matched against men who did not develop metastases (non-mPC group, n = 214). Data were collected using the EORTC QLQ-C30 and PCSS instruments. Non-parametric tests were performed for comparisons at baseline, end of RT, 3 months, and 1, 2, 3, and 5 years after RT. Results The final sample consists of 317 men (mPC n = 106; non-mPC n = 211) who had completed at least one questionnaire. Initially, symptom levels were generally low and QoL and functioning high in both groups. An increasing difference between the groups was found, where the mPC group gradually deteriorated from the 2-year follow-up. Significant differences were found for several outcomes at 3 and 5 years. In a sensitivity analysis, where metastatic patients were removed from the time-point of verified metastases, most differences did not remain significant. Significant deterioration over time was seen within both groups for some outcomes. Significance of results The results indicate that unmet supportive needs occur over time among these men. Worsening QoL or functioning and symptoms may be difficult to recognize when the development is gradual over several years, and with various access to systematic follow-up in late phases. This highlights the need for continuous monitoring of PC patients to detect needs for supportive interventions early and throughout the disease course, also among those with non-metastatic disease who have undergone curatively intended treatment.
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| 4. |
- Dubois, Hanna, et al.
(författare)
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Patient participation in tele-emergencies : experiences from healthcare professionals in northern rural Sweden
- 2022
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Ingår i: Rural and remote health. - 1445-6354. ; 22:4
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: Telemedicine provides opportunities for access to health care in remote and underserved areas. In parts of northern rural Sweden telemedicine is used to connect a remote physician by a video-conference system to an emergency room, staffed by nurses during on-call hours. This can be called 'tele-emergency'. Patient participation, often described as mutual information exchange, a trustful relationship and involvement in decision-making, is challenged in emergency care by short encounters, deteriorating patients and a stressful work situation. Nevertheless, patient participation may be important for the patients' experience. Healthcare professionals (HCPs) have been identified as 'gatekeepers' for patient participation, therefore putting their perspective in focus is important. As emergency care in rural areas is increasingly turning toward telemedicine, patient participation in tele-emergencies needs to be better understood. The aim of this study was to explore and characterise HCPs' perspectives of patient participation in tele-emergencies in northern rural Sweden.METHODS: A qualitative design based on interviews was used. HCPs working in cottage hospitals in northern rural Sweden were included. Semi-structured interviews were performed, first, in multidisciplinary groups of three informants. Later, because of limited experience of tele-emergencies in the groups, individual interviews with HCPs with substantial experience were added. A qualitative content analysis of the interview transcripts was conducted.RESULTS: A total of 44 HCPs from northern inland Sweden participated in the interviews. The content analysis resulted in two themes, six categories and 19 subcategories. Theme 1, 'To see, understand, and to build trust through the digital barrier', contains descriptions of the interpersonal relationship between the patient and the HCPs, and the challenges when interacting with the patient during a tele-emergency. The informants also described a need for boundaries between the professional team and the patient. The categories in theme 1 are 'understanding the patient's point of view', 'building a trustful relationship', and 'needing a private space without the patient'. Theme 2, 'The (im)balance of power - tele-emergency reinforces the positions', mirrors the power asymmetry in the patient-professional relationship, and the potential impact of the tele-emergency on the different roles. Tele-emergencies were described as a risk that potentially could weaken the patient's position, but also as providing an opportunity to share power. Categories in theme 2 are 'medical conditions limit patient participation', 'patient involvement in decision-making requires understanding' and 'the inferior patient and the superior professionals'.CONCLUSION: This study sheds light on patient participation in tele-emergencies in a remote rural setting from the HCP's perspective. The tele-emergency set-up affected patient participation by interfering with familiar patient-HCP relationships and changing group dynamics in interactions with the patient. Due to the extensive changes of the conditions for patient participation imposed in tele-emergencies, suggestions for actions improving patient participation are made.
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| 5. |
- Ericson-Lidman, Eva, et al.
(författare)
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Caring for people with dementia disease (DD) and working in a private not-for-profit residential care facility for people with DD
- 2014
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Ingår i: Scandinavian Journal of Caring Sciences. - : John Wiley & Sons. - 0283-9318 .- 1471-6712. ; 28:2, s. 337-346
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Tidskriftsartikel (refereegranskat)abstract
- Caring for people with dementia and working in dementia care is described as having both rewarding and unpleasant aspects and has been studied to a minor extent. This study aims to explore care providers' narrated experiences of caring for people with dementia disease (DD) and working in a private not-for-profit residential care facility for people with DD. Nine care providers were interviewed about their experiences, the interviews were recorded, transcribed and analysed using thematic analysis. The analysis revealed that participants were struggling to perform person-centred care, which meant trying to see the person behind the disease, dealing with troublesome situations in the daily care, a two-edged interaction with relatives, feelings of shortcomings and troubled conscience, and the need for improvements in dementia care. The analysis also revealed an ambiguous work situation, which meant a challenging value base, the differently judged work environment, feelings of job satisfaction and the need for a functional leadership and management. The results illuminate participants' positive as well as negative experiences and have identified areas requiring improvements. It seems of great importance to strive for a supportive and attendant leadership, a leadership which aims to empower care providers in their difficult work. Using conscience as a driving force together in the work group may benefit care providers' health.
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| 6. |
- Ericsson, Christoffer R., et al.
(författare)
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Paramedics' perceptions of job demands and resources in Finnish emergency medical services : a qualitative study
- 2022
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Ingår i: BMC Health Services Research. - : BioMed Central (BMC). - 1472-6963. ; 22
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Tidskriftsartikel (refereegranskat)abstract
- Background: Paramedics' fatigue is rising. Stress factors show increased risk for burnout, fatigue, leaving the profession, decreased performance and risk for patient safety. Meanwhile, paramedics' strong community of practice, autonomy and a sense of professional respect are important factors in forming psychological resilience. We aimed to explore Finnish paramedics' perceptions of job demands and resources.Methods: Our study design was descriptive, inductive with a constructivist approach. Using reflexive thematic analysis, we analyse open-ended questions, from a web-based survey and essays written by Finnish paramedic masters-degree students. The study followed the SRQR checklist.Results: We identified paramedics' job demands as stress from a high workload, environmental factors and emotional burden. Performance expectations and a sense of inadequacy were further noted, as well as an organizational culture of hardiness, presenting lack of support and sense of inequality. Paramedics' job resources were pressure management strategies, which were expressed as positive coping mechanisms, agency to affect workload and professional self-actualization, expressed as psychologically safe work community, professional pride and internal drive to professional development.Conclusions: Finnish paramedics exhibit resources and demands related to uncertainty and emotional burden as well as cultural hardiness and psychological safety in communities.Patient or public contribution: This study was done based on survey data collected and analysed by the authors. No patient or public contribution was utilized for this study.
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| 7. |
- Erlandsson, Kerstin, et al.
(författare)
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Mothers' experiences of the time after the diagnosis of an intrauterine death until the induction of the delivery : a qualitative Internet-based study
- 2011
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Ingår i: Journal of obstetrics and gynaecology research. - : Wiley. - 1341-8076 .- 1447-0756 .- 0144-3615 .- 1364-6893. ; 37:11, s. 1677-84
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Tidskriftsartikel (refereegranskat)abstract
- AIM: This study aims to describe how mothers spend the period of time between being diagnosed with a dead baby in utero and the induction of the delivery.MATERIAL AND METHODS: Data were collected using a web questionnaire. Five hundred and fifteen women who had experienced a stillbirth after the 22nd week of gestation answered the open question: 'What did you do between the diagnosis of the child's death and the beginning of the delivery?' A qualitative content analysis method was used.RESULTS: The results show that some mothers received help to adapt to the situation, while for others, waiting for the induction meant further stress and additional psychological trauma in an already strained situation.CONCLUSION: There is no reason to wait with the induction unless the parents themselves express a wish to the contrary. Health care professionals, together with the parents, should try to determine the best time for the induction of the birth after the baby's death in utero. That time may vary, depending on the parents' preferences.
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| 8. |
- Hajradinovic, Yvonne, et al.
(författare)
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Family members' experiences of the end-of-life care environments in acute care settings : A photo-elicitation study
- 2018
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 13:1
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: This article explores experiences of the acute-care environment as a setting for end-of-life (EoL) care from the perspective of family members of a dying person.Method: We used participant-produced photographs in conjunction with follow-up interviews with nine family members to persons at the EoL, cared for in two acute-care settings.Results: The interpretive description analysis process resulted in three constructed themes-Aesthetic and unaesthetic impressions, Space for privacy and social relationships, and Need for guidance in crucial times. Aspects of importance in the physical setting related to aesthetics, particularly in regard to sensory experience, and to a need for enough privacy to facilitate the maintenance of social relationships. Interactions between the world of family members and that of professionals were described as intrinsically related to guidance about both the material and immaterial environment at crucial times.Conclusion: The care environment, already recognized to have an impact in relation to patients, is concluded to also affect the participating family members in this study in a variety of ways.
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| 9. |
- Hedman, Ragnhild, 1962-, et al.
(författare)
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Enacting person-centred care in home care services for people with dementia
- 2022
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Ingår i: Journal of Clinical Nursing. - : John Wiley & Sons. - 0962-1067 .- 1365-2702. ; 31:11-12, s. 1519-1530
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Tidskriftsartikel (refereegranskat)abstract
- Aims and objectives: To develop the theoretical understanding of the process of providing person-centred home care for people with dementia.Background: People with dementia are increasingly cared for at home by family members and home care staff. Care of people with dementia should be person-centred; however, little is known about how home care staff understand and enact person-centred care in their daily work.Design: Grounded theory.Methods: Home care staff (n = 29) were recruited from home care services specialised in providing care for people with dementia. Group interviews were conducted, and a tentative theoretical model for providing person-centred home care to people with dementia was outlined. Nine of the participants were then individually interviewed to further develop the model. The analysis was conducted parallel to the data collection, and hypotheses concerning the evolving theoretical model were continuously tested in the following interviews. The COREQ checklist for qualitative studies was used in reporting the study.Results: Person-centred home care of people with dementia was conceptualised as a series of processes: Getting ready, getting in, giving care, getting out and finalising the story, each with subprocesses. Theatre metaphors were used to describe how the care was provided. A core process, Enacting and re-enacting familiarity, was at centre in all processes.Conclusions: In the person-centred care of people with dementia, familiarity had to be established and continuously fostered. When familiarity was in place, the care recipient and the home care staff acted as a team to perform the care. The theoretical works of Goffman were used to interpret the results.Relevance to clinical practice: The study provides a model for person-centred care of people with dementia at home that deepens the understanding of its processes, prerequisites and outcomes. The model can inform education and administration of home care for people with dementia.
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| 10. |
- 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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