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1.
  • Rådestad, Ingela, et al. (creator_code:aut_t)
  • Being alone in silence - Mothers' experiences upon confirmation of their baby's death in utero
  • 2014
  • record:In_t: Midwifery. - : Elsevier BV. - 0266-6138 .- 1532-3099. ; 30:3, s. e91-e95
  • swepub:Mat_article_t (swepub:level_refereed_t)abstract
    • OBJECTIVE: to explore mothers' experiences of the confirmation of ultrasound examination results and how they were told that their baby had died in-utero.DESIGN: in-depth interviews.SETTING: Sweden.PARTICIPANTS: 26 mothers of stillborn babies.MEASUREMENT: narratives were analysed using a qualitative content analysis with an inductive approach.FINDINGS: the mothers experienced that silence prevailed during the entire process of confirming the ultrasound results. Typically all present in the ultrasound room were concentrating and focusing on what they observed on the screen, no one spoke to the mother. The mothers had an instinctive feeling that their baby might be dead based on what they observed on the ultrasound screen and on their interpretation of the body language of the clinicians and midwives. Some mothers reported a time delay in receiving information about their baby's death. Experiencing uncertainty about the information received was also noticed.CONCLUSION: mothers emphasised an awareness of silence and feelings of being completely alone while being told of the baby's death.IMPLICATION FOR PRACTICE: the prevalence of silence during an ultrasound examination may in certain cases cause further psychological trauma for the mother of a stillborn baby. One way to move forward given these results may be to provide obstetric personnel sufficient training on how difficult information might be more effectively and sensitively provided in the face of an adverse pregnancy outcome.
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2.
  • Doveson, Sandra, et al. (creator_code:aut_t)
  • 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
  • record:In_t: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 21:2, s. 230-238
  • swepub:Mat_article_t (swepub:level_refereed_t)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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3.
  • Hajradinovic, Yvonne, et al. (creator_code:aut_t)
  • Family members' experiences of the end-of-life care environments in acute care settings : A photo-elicitation study
  • 2018
  • record:In_t: International Journal of Qualitative Studies on Health and Well-being. - : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 13:1
  • swepub:Mat_article_t (swepub:level_refereed_t)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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4.
  • Hedman, Ragnhild, 1962-, et al. (creator_code:aut_t)
  • Enacting person-centred care in home care services for people with dementia
  • 2022
  • record:In_t: Journal of Clinical Nursing. - : John Wiley & Sons. - 0962-1067 .- 1365-2702. ; 31:11-12, s. 1519-1530
  • swepub:Mat_article_t (swepub:level_refereed_t)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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5.
  • Rosenblad, Andreas, Fil. dr, docent, 1973-, et al. (creator_code:aut_t)
  • Differences in health-related quality of life between native and foreign-born gynaecological cancer patients in Sweden : a five-year cross-sectional study
  • 2023
  • record:In_t: Quality of Life Research. - : Springer Nature. - 0962-9343 .- 1573-2649.
  • swepub:Mat_article_t (swepub:level_refereed_t)abstract
    • Purpose: To examine differences in health-related quality of life (HRQoL) between native and foreign-born gynaecological cancer patients in Sweden, taking into account clinical, demographic, and socioeconomic factors.Methods: The 30-item European Organisation for Research and Treatment of Cancer quality of life questionnaire (QLQ-C30) and a study-specific questionnaire covering demographic and socioeconomic factors were answered by 684 women aged ≥ 18 years old, diagnosed in 2014, 2016, or 2018 with gynaecological cancer in the Stockholm-Gotland health care region, Sweden. Clinical data were obtained from the Swedish Cancer Register. Data were analysed using the Kruskal–Wallis test and linear regression.Results: The women had a mean age of 65.4 years, with 555 (81.1%) born in Sweden, 54 (7.9%) in other Nordic countries (ONC), 43 (6.3%) in other European countries (OEC), and 32 (4.7%) in non-European countries (NEC). HRQoL differed significantly between the four groups for 14 of the 15 QLQ-C30 scales/items. On average, Swedish-born women scored 2.0, 15.2, and 16.7 points higher for QoL/functioning scales/items and 2.2, 14.1, and 18.7 points lower for symptom scales/items, compared with ONC-, OEC-, and NEC-born women, respectively. In adjusted analyses, none of the differences between Swedish-born and ONC-born women were significant, while for OEC- and NEC-born women the differences were significant for most QLQ-C30 scales/items.Conclusion: HRQoL differs between native and foreign-born gynaecological cancer patients in Sweden, with lower HRQoL the further from Sweden the women are born. A more individualised cancer care, with tailored support to optimize HRQoL is needed for this vulnerable group of patients.
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6.
  • Scott Duncan, Therese, et al. (creator_code:aut_t)
  • Empowered patients and informal care-givers as partners? : A survey study of healthcare professionals' perceptions
  • 2023
  • record:In_t: BMC Health Services Research. - : BioMed Central (BMC). - 1472-6963. ; 23:1
  • swepub:Mat_article_t (swepub:level_refereed_t)abstract
    • BACKGROUND: More knowledge is needed regarding the perceptions of healthcare professionals when encountering empowered patients and informal caregivers in clinical settings. This study aimed to investigate healthcare professionals' attitudes towards and experiences of working with empowered patients and informal caregivers, and perception of workplace support in these situations. METHODS: A multi-centre web survey was conducted using a non-probability sampling of both primary and specialized healthcare professionals across Sweden. A total of 279 healthcare professionals completed the survey. Data was analysed using descriptive statistics and Thematic analysis. RESULTS: Most respondents perceived empowered patients and informal caregivers as positive and had to some extent experience of learning new knowledge and skills from them. However, few respondents stated that these experiences were regularly followed-up at their workplace. Potentially negative consequences such as increased inequality and additional workload were, however, mentioned. Patients' engagement in the development of clinical workplaces was seen as positive by the respondents, but few had own experience of such engagement and considered it difficult to be achieved. CONCLUSION: Overall positive attitudes of healthcare professionals are a fundamental prerequisite to the transition of the healthcare system recognizing empowered patients and informal caregivers as partners.
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7.
  • Seiger-Cronfalk, Berit, et al. (creator_code:aut_t)
  • Utilization of palliative care principles in nursing home care : educational interventions
  • 2015
  • record:In_t: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 13:6, s. 1745-1753
  • swepub:Mat_article_t (swepub:level_refereed_t)abstract
    • Objective: This study is part of the overarching PVIS (Palliative Care in Nursing Homes) project aimed at building competence in palliative care for nursing home staff. Our objective was to describe nursing home staff's attitudes to competence-building programs in palliative care. Method: Three different programs were developed by specialist staff from three local palliative care teams. In all, 852 staff at 37 nursing homes in the greater Stockholm area participated. Staff from 7 nursing homes participated in 11 focus-group discussions. Variation in size between the seven nursing homes initiated purposeful selection of staff to take part in the discussions, and descriptive content analysis was used. Results: The results suggest that staff reported positive experiences as they gained new knowledge and insight into palliative care. The experiences seemed to be similar independent of the educational program design. Our results also show that staff experienced difficulties in talking about death. Enrolled nurses and care assistants felt that they carried out advanced care without the necessary theoretical and practical knowledge. Further, the results also suggest that lack of support from ward managers and insufficient collaboration and of a common language between different professions caused tension in situations involved in caring for dying people. Significance of results: Nursing home staff experienced competence-building programs in palliative care as useful. Even so, further competence is needed, as is long-term implementation strategies and development of broader communication skills among all professions working in nursing homes.
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8.
  • Dubois, Hanna, et al. (creator_code:aut_t)
  • Patient participation in tele-emergencies : experiences from healthcare professionals in northern rural Sweden
  • 2022
  • record:In_t: Rural and remote health. - 1445-6354. ; 22:4
  • swepub:Mat_article_t (swepub:level_refereed_t)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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9.
  • Holm, Maja, et al. (creator_code:aut_t)
  • Quality of life in men with metastatic prostate cancer in their final years before death : a retrospective analysis of prospective data
  • 2018
  • record:In_t: BMC Palliative Care. - : BMC. - 1472-684X. ; 17
  • swepub:Mat_article_t (swepub:level_refereed_t)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.
  • Nazari, Shima, et al. (creator_code:aut_t)
  • Perceptions and stress of conscience in relation to burnout among nursing staff in older people care settings : a cross sectional study
  • 2023
  • record:In_t: BMC Nursing. - : BioMed Central (BMC). - 1472-6955 .- 1472-6955. ; 22:1
  • swepub:Mat_article_t (swepub:level_refereed_t)abstract
    • Background: Considering cultural influences, it is important to study the perceptions and stress of conscience in different contexts. This study aimed to investigate the association between perceptions of conscience, stress of conscience, and burnout among nursing staff working in older people care settings in Tehran.Methods: This was a descriptive, cross-sectional study. A total of 161 participants completed the Perceptions of Conscience Questionnaire, Stress of Conscience Questionnaire, and Oldenburg Burnout Inventory, 2019. All nursing staff working at the 20 contacted nursing homes agreed to participate in the study. The descriptive and inferential analysis was conducted through SPSS, using T-tests and one-way between-groups analysis of variance, Chi-square and t-tests, Cohen's d (d), Eta-squared (η2), and Phi coefficient (φ), Partial least squares regression (PLSR), jackknife approximate t-tests of the regression coefficients, and jackknife 95% confidence intervals of the regression coefficients.Results: The nursing staff perceived their conscience mainly as an authority, asset, and warning signal. Impact of workload on family life was the most common source of stress for the nursing staff. Dealing with incompatible demands, the impact of workload on family life, witnessing insulated patients, inability to meet one’s standards in providing care, and perception of conscience as a burden were strongly associated with the burnout.Conclusions: Perceiving conscience as a warning signal or authority may serve as a buffer against burnout among nursing staff. This study highlights the need for further exploration of perceptions of conscience in different cultural and social backgrounds.
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