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1.	Falk Erhag, Hanna, et al. (author) Introduction 2022 In: A Multidisciplinary Approach to Capability in Age and Ageing. - Cham : Springer. - 9783030780654 Book chapter (other academic/artistic)abstract In 2020, for the first time in history, there were more people in the world aged 60 years and over than there were children below the age of 5 years. The population aged over 65 years is projected to increase from one billion in 2019 to more than two billion in 2050, and those aged over 80 years are projected to increase from 143 to 426 million, with the largest increase occurring in the developing world (UN World Population Prospects, 2019). This demographic trend constitutes the largest global health challenge, according to the World Health Organisation (WHO). The European Union has set it as one of the major challenges in Horizon 2020 and it has important societal implications (European Commission, 2020). The proportion of retired individuals will increase, leading to an increased ratio between those who have exited the workforce and those still active in the labour market. Thus, ageing represents a global societal and scientific challenge requiring integrated efforts, multidisciplinary translational research approaches and social innovations that build on ideas of potentials and capabilities, emphasising the value of old age.
2.	Eilertsen, M. E. B., et al. (author) Impact of Social Support on Bereaved Siblings' Anxiety: A Nationwide Follow-Up 2013 In: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 30:6, s. 301-310 Journal article (peer-reviewed)abstract Purpose:To assess adolescent and young adult siblings' perception of social support prior to and following the loss of their brother or sister to cancer, 2 to 9 years earlier, and their anxiety at follow-up. Method: In 2009, 174 (73%) bereaved siblings (12-25 years) participated in a nationwide, long-term follow-up study in Sweden using an anonymous study-specific questionnaire. The Hospital Anxiety and Depression Scale was used to measure self-assessed anxiety. Results: Siblings had a higher risk of anxiety if they perceived their need for social support was unsatisfied during their brother or sisters' last month before death, relative risk (RR) = 3.6 (95% confidence interval [CI] = 1.8-7.3); time after death, RR = 2.9 (95% CI = 1.5-5.6); and at follow-up, RR = 3.8 (95% CI = 2.0-7.2). Furthermore, a higher risk for anxiety was shown for siblings if they did not perceive that their parents and neighbors cared for them after their brother or sisters' death, RR = 2.7 (95% CI = 1.3-5.5), RR = 5.4 (95% CI = 1.3-21.9), respectively. Conclusion: Bereaved siblings had a greater probability to report self-assessed anxiety if they perceived that their need for social support was not satisfied prior to and following death. Information from both nurses and other health care professionals to families about the impact of social support may contribute to lessen the siblings' risk of anxiety.
3.	Flink, Maria, et al. (author) Measuring care transitions in Sweden : validation of the care transitions measure 2018 In: International Journal for Quality in Health Care. - : Oxford University Press. - 1353-4505 .- 1464-3677. ; 30:4, s. 291-297 Journal article (peer-reviewed)abstract Objective: To translate and assess the validity and reliability of the original American Care Transitions Measure, both the 15-item and the shortened 3-item versions, in a sample of people in transition from hospital to home within Sweden.Design: Translation of survey items, evaluation of psychometric properties.Setting: Ten surgical and medical wards at five hospitals in Sweden.Participants: Patients discharged from surgical and medical wards.Main outcome measure: Psychometric properties of the Swedish versions of the 15-item (CTM-15) and the 3-item (CTM-3) Care Transition Measure.Results: We compared the fit of nine models among a sample of 194 Swedish patients. Cronbach's alpha was 0.946 for CTM-15 and 0.74 for CTM-3. The model indices for CTM-15 and CTM-3 were strongly indicative of inferior goodness-of-fit between the hypothesized one-factor model and the sample data. A multidimensional three-factor model revealed a better fit compared with CTM-15 and CTM-3 one factor models. The one-factor solution, representing 4 items (CTM-4), showed an acceptable fit of the data, and was far superior to the one-factor CTM-15 and CTM-3 and the three-factor multidimensional models. The Cronbach's alpha for CTM-4 was 0.85.Conclusions: CTM-15 with multidimensional three-factor model was a better model than both CTM-15 and CTM-3 one-factor models. CTM-4 is a valid and reliable measure of care transfer among patients in medical and surgical wards in Sweden. It seems the Swedish CTM is best represented by the short Swedish version (CTM-4) unidimensional construct.
4.	Pietilä Rosendahl, Sirpa, PhD, Associate Professor, Senior Lecturer, et al. (author) What has healthy aging to do with my lifestyle? : perspectives of Thai and Swedish nursing students 2015 Conference paper (peer-reviewed)
5.	Berg, Linda, 1961, et al. (author) Characterisation of Cancer Support and Rehabilitation Programmes: A Swedish Multiple Case Study 2014 In: The open nursing journal. - : Bentham Science Publishers Ltd.. - 1874-4346. ; 8, s. 1-7 Journal article (peer-reviewed)abstract Cancer support and rehabilitation are suggested to be an integral part of cancer care strategies. This study focuses on comparativeness of cancer support and rehabilitation programmes. The aim of this study was to analyse available cancer support and rehabilitation programmes in Sweden presented as complementary to cancer rehabilitation at cancer clinics. A multiple case study design was chosen in order to inquire the small number of existing supportive and rehabilitative cancer programmes. Based on the structures, processes and outcomes of the nine included programmes, three types of cancer support and rehabilitation programmes were identified: multimodal rehabilitation, comprehensive cancer support and art therapy. Cancer support and rehabilitation programmes offer a variety of activities and therapies which are highly valuable and relevant for people with cancer. The typology of cancer support and rehabilitation programmes and comparability between programmes need further inquiry.
6.	Lundgren Nilsson, Åsa, 1965, et al. (author) Validation of Fatigue Impact Scale with various item sets – a Rasch analysis 2019 In: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 41:7, s. 840-846 Journal article (peer-reviewed)abstract © 2017 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group Purpose: Fatigue is a symptom in patients with chronic gastrointestinal (GI) and liver diseases. Different instruments have been developed to assess the severity of fatigue and the 40-item Fatigue Impact Scale (FIS) is among the most widely used. Shorter versions of FIS include the 21-item Modified Fatigue Impact Scale (MFIS), and an eight-item version for everyday use. The study aimed to assess construct validity, reliability, and sufficiency of the raw score of the original FIS with 40 items, and examine the sufficiency of the 21 items from the Modified scale and the eight items of the Daily Fatigue Impact Scale (D-FIS), all of which are embedded in the 40-item scale. Methods: Patients with chronic GI or liver disease (n=354) completed the FIS with 40 items. The majority (57%) was under the age of 55years and approximately half were females (48%). Various item sets of FIS were derived which showed fit to the Rasch model. Results: Local dependency and multidimensionality in FIS and the 21-item Modified scale were resolved with a testlet solution but the D-FIS showed local dependency and multidimensionality and differential item functioning (DIF) still remained. Two new item sets fulfilling unidimensionality and no DIF are suggested, one with 15 items and a six-item scale for daily use. The transformation table shows score-interval scale estimates for all these item sets. Conclusions: Both the FIS and the Modified scale can be used to measure fatigue albeit requiring some adjustment for DIF. The eight-item D-FIS is more problematic, and its summed score is not valid. Alternative 15- and 6-item versions presented in this paper can offer valid summed scores, and the transformation table allows transformation of raw scores and comparisons across all versions.Implications for rehabilitationThe Fatigue Impact Scale and the Modified Fatigue Impact Scale can be used to measure fatigue after adjustments for differential item functioning.Alternative 15- and 6-item versions of Fatigue Impact Scale offer valid summed scores. The summed score for the Daily Fatigue Impact Scale is not valid.A transformation table with raw scores and Rasch transformed interval scale metric makes it possible to compare scores derived from the Fatigue Impact Scale, the Modified Fatigue Impact Scale and the proposed 15- and 6-item versions of Fatigue Impact Scale for research and/or clinical use.
7.	Wickford, Jenny, 1979, et al. (author) Physiotherapy in Afghanistan - Needs and challenges for development. 2008 In: Disabil Rehabil.. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 30:4, s. 305-313 Journal article (peer-reviewed)abstract Purpose. The aim of this paper is to describe and analyse the current situation of the physiotherapy component of the Rehabilitation of Afghans with Disability (RAD) programme, in order to identify the needs and challenges for further development. Method. The study was conducted as a field study with an anthropological approach by means of participant observation, unstructured and semi-structured interviews and photography. Results. The therapists in RAD work in isolation with little opportunity for further education or professional development. Their approach is mainly medical, where the work is dictated by the patients' expectations and doctors' recommendations. They use primarily passive methods of treatment, and their work is affected by cultural, religious and situational factors. They demonstrate a low capacity of clinical reasoning in their practical work. Conclusions. There is a need for further development of physiotherapy in Afghanistan. Active and individually adapted treatment methods, clinical reasoning processes and evidence-based practice should be encouraged. There are several challenges in this, based on Afghan culture and traditions, gender issues, religious factors, an authoritative society, a medical approach in treatment, and isolation and limitations in access to information. By means of an Action Research project the physiotherapists could be included in further development and research to promote a sustainable and culturally relevant development.
8.	Westgård, Theresa, 1969, et al. (author) Comprehensive geriatric assessment pilot of a randomized control study in a Swedish acute hospital : a feasibility study 2018 In: Pilot and Feasibility Studies. - : Springer Science and Business Media LLC. - 2055-5784. ; 4 Journal article (peer-reviewed)abstract Background: Comprehensive geriatric assessment (CGA) represent an important component of geriatric acute hospital care for frail older people, secured by a multidisciplinary team who addresses the multiple needs of physical health, functional ability, psychological state, cognition and social status. The primary objective of the pilot study was to determine feasibility for recruitment and retention rates. Secondary objectives were to establish proof of principle that CGA has the potential to increase patient safety.Methods: The CGA pilot took place at a University hospital in Western Sweden, from March to November 2016, with data analyses in March 2017. Participants were frail people aged 75 and older, who required an acute admission to hospital. Participants were recruited and randomized in the emergency room. The intervention group received CGA, a person-centered multidisciplinary team addressing health, participation, and safety. The control group received usual care. The main objective measured the recruitment procedure and retention rates. Secondary objectives were also collected regarding services received on the ward including discharge plan, care plan meeting and hospital risk assessments including risk for falls, nutrition, decubitus ulcers, and activities of daily living status.Result: Participants were recruited from the emergency department, over 32 weeks. Thirty participants were approached and 100% (30/30) were included and randomized, and 100% (30/30) met the inclusion criteria. Sixteen participants were included in the intervention and 14 participants were included in the control. At baseline, 100% (16/16) intervention and 100% (14/14) control completed the data collection. A positive propensity towards the secondary objectives for the intervention was also evidenced, as this group received more care assessments. There was an average difference between the intervention and control in occupational therapy assessment - 0.80 [95% CI 1.06, - 0.57], occupational therapy assistive devices - 0.73 [95% CI 1.00, - 0.47], discharge planning -0.21 [95% CI 0.43, 0.00] and care planning meeting 0.36 [95% CI-1.70, -0.02]. Controlling for documented risk assessments, the intervention had for falls - 0.94 [95% CI 1.08, - 0.08], nutrition - 0.87 [95% CI 1.06, - 0.67], decubitus ulcers - 0.94 [95% CI 1.08, - 0.80], and ADL status - 0.80 [95% CI 1.04, - 0.57].Conclusion: The CGA pilot was feasible and proof that the intervention increased safety justifies carrying forward to a large-scale study.Trial registration: Clinical Trials ID: NCT02773914. Registered 16 May 2016.
9.	Kirvalidze, Mariam, et al. (author) Effectiveness of integrated person-centered interventions for older people's care: Review of Swedish experiences and experts’ perspective 2024 In: Journal of Internal Medicine. - : John Wiley & Sons. - 1365-2796 .- 0954-6820. ; 295:6, s. 804-824 Journal article (peer-reviewed)abstract Older adults have multiple medical and social care needs, requiring a shift toward an integrated person-centered model of care. Our objective was to describe and summarize Swedish experiences of integrated person-centered care by reviewing studies published between 2000 and 2023, and to identify the main challenges and scientific gaps through expert discussions. Seventy-three publications were identified by searching MEDLINE and contacting experts. Interventions were categorized using two World Health Organization frameworks: (1) Integrated Care for Older People (ICOPE), and (2) Integrated People-Centered Health Services (IPCHS). The included 73 publications were derived from 31 unique and heterogeneous interventions pertaining mainly to the micro- and meso-levels. Among publications measuring mortality, 15% were effective. Subjective health outcomes showed improvement in 24% of publications, morbidity outcomes in 42%, disability outcomes in 48%, and service utilization outcomes in 58%. Workshop discussions in Stockholm (Sweden), March 2023, were recorded, transcribed, and summarized. Experts emphasized: (1) lack of rigorous evaluation methods, (2) need for participatory designs, (3) scarcity of macro-level interventions, and (4) importance of transitioning from person- to people-centered integrated care. These challenges could explain the unexpected weak beneficial effects of the interventions on health outcomes, whereas service utilization outcomes were more positively impacted. Finally, we derived a list of recommendations, including the need to engage care organizations in interventions from their inception and to leverage researchers’ scientific expertise. Although this review provides a comprehensive snapshot of interventions in the context of Sweden, the findings offer transferable perspectives on the real-world challenges encountered in this field.
10.	Liljeroos, Maria (author) Caring needs in patient-partner dyads affected by heart failure : An evaluation of the long-term effects of a dyadic psycho-educational intervention 2017 Doctoral thesis (other academic/artistic)abstract Introduction: As medical treatment has improved, patients with heart failure (HF) now live longer and care mostly takes place at home with partners providing the main assistance. Taking care of an ill or disabled individual imposes a well-documented burden on the partner’s healthrelated quality of life. The awareness of partners’ burdensome situation is increasing, but few interventions have targeted the needs of patientpartner dyads with HF. The results have been inconclusive and give no clear guidance on how interventional programmes should be designed to improve both patient and partner outcomes.Aim: The overall aim of this thesis was to evaluate the effects of a psychoeducational intervention delivered to patient-partner dyads with HF during long-term follow-up, and to explore the dyads’ perceived caring needs.Methods: The thesis is based on four papers that used both quantitative and qualitative data. Study I and II used a randomized controlled design with a follow-up assessment after 24 months including 155 patientpartner dyads. The control group received care as usual. The intervention group received care as usual, and in addition they participated in the nurse-led psycho-educational intervention. Data was collected using questionnaires before and 24 months after the intervention, in order to determine the long-term effects on patients and partners regarding health related quality of life, perceived control, symptoms of depression and partners’ caregiver burden (I, II). A conceptual health promotion model inspired the intervention. To describe how the model was applied, a qualitative approach analysing nurses’ documentation of the sessions with 71 dyads in the intervention group (III) was used. Study IV has an explorative design. To further explore the dyads’ perceived caring needs, focus groups interviews with 19 patient-partner dyads with heart failure (IV) were performed.Results: The intervention did not have any significant effect on physical or mental health- related quality of life, depressive symptoms, or perceived control over the heart failure among the dyads (I) or caregiver burden in the partners (II) after 24 months. Furthermore, time to first event did not differ significantly between the dyads in the intervention group and the control group (I, II). As for the partners, both the intervention and control group reported decreased physical health between the baseline assessment and the 24-month follow-up (I). The intervention was composed of three components; 1) cognitive 2) supportive, and 3) behavioural component. The analysis of the nurses’ documentation confirmed the coverage of all the components and the analysis revealed a vide range of caring needs among the dyads (III). The dyads described a need to learn about HF to be able to manage everyday life. Regular outpatient clinic visits and access to telephone support were vital and both the patient and the partner need to be present at the clinic visits. Meeting others who are in the same situation and sharing the burden in nurse-led group sessions was proposed as an opportunity to support each other and others (IV).Conclusions: Over the 24-month follow-up period, the intervention had a neutral effect on health- related quality of life, depressive symptoms and perceived control over the HF among the dyads, and on partners’ caregiver burden. Considering the fact that partners serve as a critical extension of the formal healthcare system, and that both patients and partners ask for more support, it will become crucial to find new ways to support dyads affected by heart failure. This thesis may be viewed as a first step in trying to understand dyads’ perceived caring needs, and it can serve as a guide in clinical work and when designing new dyadic interventions.
11.	Pauli Bock, Emelie, et al. (author) Literature Review : Evidence-Based Health Outcomes and Perceptions of the Built Environment in Pediatric Hospital Facilities. 2021 In: Journal of Pediatric Nursing. - : Elsevier. - 0882-5963 .- 1532-8449. ; 61, s. e42-e50 Journal article (peer-reviewed)abstract PROBLEM: The current knowledge of evidence-based design for adults is not always implemented when hospital buildings are designed. Scientific data are sparse on the effects of hospital design in pediatric settings on health outcomes in children, parents, and staff. The objective of this review is to determine the evidence-based impact of the built environment in pediatric hospital facilities on health outcomes in children, parents, and staff.ELIGIBILITY CRITERIA: A systematic literature review was carried out on the electronic databases Cochrane Library, Embase, Medline and CINAHL from the period of 2008 to 2019. The review considered studies using either quantitative, qualitative, or mixed methodologies.SAMPLE: Out of 1414 reviewed articles the result is based on eight included articles.RESULTS: Two of these eight articles included health outcomes. The other six articles presented results on measures of perceptions and/or satisfaction for children, parents or staff with the built environment when transitioning to a new or renovated facility. These were generally higher for the new compared to the old facility.CONCLUSIONS: Given the small number of studies addressing the question posed in this review, no firm conclusions can be drawn.IMPLICATIONS: The review illustrates the need for more research in the pediatric setting assessing the evidence-based health outcomes of aspects of physical environmental design in pediatric hospitals or units in children, parents and staff.
12.	Klompstra, Leonie, 1982- (author) Physical activity in patients with heart failure : motivations, self-efficacy and the potential of exergaming 2016 Doctoral thesis (other academic/artistic)abstract Background: Adherence to recommendations for physical activity is low in patients with heart failure (HF). It is essential to explore to what extent and why patients with HF are physically active. Self-efficacy and motivation for physical activity are important in becoming more physically active, but the role of self-efficacy in the relationship between motivation and physical activity in patients with HF is unknown. Alternative approaches to motivate and increase self-efficacy to exercise are needed. One of these alternatives might be using exergames (games to improve physical exercise). Therefore, it is important to obtain more knowledge on the potential of exergaming to increase physical activity.The overall aim was to describe the physical activity in patients with HF, with special focus on motivations and self-efficacy in physical activity, and to describe the potential of exergaming to improve exercise capacity.Methods: Study I (n = 154) and II (n = 101) in this thesis had a cross-sectional survey design. Study III (n = 32) was a 12-week pilot intervention study, including an exergame platform at home, with a pretest-posttest design. Study IV (n = 14) described the experiences of exergaming in patients who participated in the intervention group of a randomized controlled study in which they had access to an exergame platform at home.Results: In total, 34% of the patients with HF had a low level of physical activity, 46% had a moderate level, 23% reported a high level. Higher education, higher selfefficacy, and higher motivation were significantly associated with a higher amount of physical activity. Barriers to exercise were reported to be difficult to overcome and psychological motivations were the most important motivations to be physically active. Women had significantly higher total motivation to be physically active. Self-efficacy mediated the relationship between exercise motivation and physical activity; motivation leads to a higher self-efficacy towards physical activity.More than half of the patients significantly increased their exercise capacity after 12 weeks of using an exergame platform at home. Lower NYHA-class and shorter time since diagnosis were factors significantly related to the increase in exercise capacity. The mean time spent exergaming was 28 minutes per day. Having grandchildren and being male were related to more time spent exergaming.The analysis of the qualitative data resulted in three categories describing patients’ experience of exergaming: (i) making exergaming work, (ii) added value of exergaming, (iii) no appeal of exergaming.Conclusion: One-third of the patients with HF had a low level of physical activity in their daily life. Level of education, exercise self-efficacy, and motivation were important factors to take into account when advising patients with HF about physical activity. In addition to a high level of motivation to be physically active, it is important that patients with HF have a high degree of exercise self-efficacy.Exergaming has the potential to increase exercise capacity in patients with HF. The results also showed that this technology might be suitable for some patients while others may prefer other kinds of physical activity.
13.	Svanberg, Mikael, 1958-, et al. (author) Impact of emotional distress and pain-related fear on patients with chronic pain : Subgroup analysis of patients referred to multimodal rehabilitation 2017 In: Journal of Rehabilitation Medicine. - : Foundation for Rehabilitation Information. - 1650-1977 .- 1651-2081. ; 49:4, s. 354-361 Journal article (peer-reviewed)abstract Objective: Multimodal rehabilitation programmes (MMRP) for chronic pain could be improved by determining which patients do not benefit fully. General distress and pain-related fear may explain variations in the treatment effects of MMRP.Design: Cohort study with a cross-sectional, prospective part.Patients: Chronic musculoskeletal pain patients referred to 2 hospital-based pain rehabilitation clinics.Methods: The cross-sectional part of this study cluster analyses patients (n = 1,218) with regard to distress and pain-related fear at first consultation in clinical pain rehabilitation and describes differences in external variables between clusters. The prospective part follows the subsample of patients (n = 260) participating in MMRP and describes outcome post-treatment.Results: Four distinct subgroups were found: (i) those with low levels of distress and pain-related fear; (ii) those with high levels of pain-related fear; (iii) those with high levels of distress; and (iv) those with high levels of distress and pain-related fear. These subgroups showed differences in demographics, pain characteristics, quality of life, and acceptance, as well as the degree of MMRP participation and MMRP outcome.Conclusion: Among patients with chronic pain referred to MMRP there are subgroups with different profiles of distress and pain-related fear, which are relevant to understanding the adaptation to pain and MMRP outcome. This knowledge may help us to select patients and tailor treatment for better results.
14.	Beernaert, Kim, et al. (author) Distrust in the End-of-Life Care Provided to a Parent and Long-Term Negative Outcomes Among Bereaved Adolescents : A Population-Based Survey Study 2017 In: Journal of Clinical Oncology. - : American Society of Clinical Oncology. - 0732-183X .- 1527-7755. ; 35:27, s. 3136-3142 Journal article (peer-reviewed)abstract Purpose Previous research shows that the death of a parent places children at risk for a number of negative outcomes. The role of trust in health care at the end of life has been acknowledged as crucial for patients and adult family members. However, the consequences of children's distrust in the care provided to their parents remain unknown. Therefore, we investigated the negative long-term outcomes of cancer-bereaved sons' and daughters' distrust in the care that was provided to a dying parent. Methods We used a population-based nationwide survey to investigate self-reported distrust in the care provided and possible negative outcomes in 622 (73%) participants who had lost a parent as a result of cancer 6 to 9 years earlier, at ages 13 to 16 years. All participants were 18 years or older at the time of the survey. Results In those who reported no or little trust (ie, distrust) in the health care provided to their dying parents, we found statistically significantly higher risks of various negative outcomes at the time of survey: bitterness toward health care professionals for not having done everything that was possible (crude risk ratio [RR], 3.5; 95% CI, 2.3 to 5.1) and for having stopped treatment (RR, 3.4; 95% CI, 2.1 to 6.0), self-destructiveness (eg, self-injury [RR, 1.7; 95% CI, 1.2 to 2.4]), and psychological problems (eg, moderate to severe depression according to the Patient Health Questionnaire-9 [RR, 2.3; 95% CI, 1.5 to 3.5]). Conclusion In cancer-bereaved former adolescents, distrust in the health care provided to the dying parent is associated with a higher risk of negative long-term outcomes. The health care professionals involved in this care might play an important role in safeguarding the trust of adolescents.
15.	Holm, Maja, et al. (author) Short-term and long-term effects of a psycho-educational group intervention for family caregivers in palliative home care - results from a randomized control trial. 2016 In: Psycho-oncology. - : Wiley. - 1099-1611 .- 1057-9249. ; 25:7, s. 795-802 Journal article (peer-reviewed)abstract Family caregivers in cancer and palliative care often face heavy responsibilities and feel insufficiently prepared for the situation as caregivers. This study evaluates short-term and long-term effects of a psycho-educational group intervention aiming to increase preparedness for family caregiving in specialized palliative home care.
16.	Lind, Susanne, et al. (author) Implementation of the integrated palliative care outcome scale in acute care settings - a feasibility study 2018 In: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 16:6, s. 698-705 Journal article (peer-reviewed)abstract Objective: Although hospitals have been described as inadequate place for end-of-life care, many deaths still occur in hospital settings. Although patient-reported outcome measures have shown positive effects for patients in need of palliative care, little is known about how to implement them. We aimed to explore the feasibility of a pilot version of an implementation strategy for the Integrated Palliative care Outcome Scale (IPOS) in acute care settings.Method: A strategy, including information, training, and facilitation to support the use of IPOS, was developed and carried out at three acute care units. For an even broader understanding of the strategy, it was also tested at a palliative care unit. A process evaluation was conducted including collecting quantitative data and performing interviews with healthcare professionals.Result: Factors related to the design and performance of the strategy and the context contributed to the results. The prevalence of completed IPOS in the patient's records varied from 6% to 44% in the acute care settings. At the palliative care unit, the prevalence in the inpatient unit was 53% and the specialized home care team 35%. The qualitative results showed opposing perspectives concerning the training provided: Related to everyday work at the acute care units and Nothing in it for us at the palliative care unit. In the acute care settings, A need for an improved culture regarding palliative care was identified. A context characterized by A constantly increasing workload, a feeling of Constantly on-going changes, and a feeling of Change fatigue were found at all units. Furthermore, the internal facilitators and the nurse managers' involvement in the implementation differed between the units.Significance of the results: The feasibility of the strategy in our study is considered to be questionable and the components need to be further explored to enhance the impact of the strategy and thereby improve the use of IPOS.
17.	Lundberg, Emma, 1984, et al. (author) Place of death among foreign-born individuals: a national population-based register study. 2023 In: Palliative care and social practice. - 2632-3524. ; 17 Journal article (peer-reviewed)abstract Relatively little is known about where foreign-born individuals die in Sweden and how birth region might influence place of death. Thus, there is a need for population-based studies investigating place of death and associated factors among foreign-born individuals.The aim of this study was to identify variations in place of death among foreign-born individuals residing in Sweden and to compare place of death between the foreign- and domestic-born population. We also examine the association between place of death, underlying cause of death and sociodemographic characteristics among the foreign-born population.A population-based register study.All deceased individuals ⩾18years of age in Sweden with a registered place of death between 2012 and 2019 (n=682,697). Among these, 78,466 individuals were foreign-born. Univariable multinomial logistic regression modelling and multivariable multinomial logistic regression analyses were performed.Overall, hospital was the most common place of death among the foreign-born population. However, there were variations in place of death related to region of birth. Compared to domestic-born, a higher proportion of foreign-born individuals dies at home, the majority of whom were born on the African continent.Region of birth is one of the several factors associated with place of death among foreign-born individuals. Further research is needed to explore both preferences and barriers to place of death among foreign-born individuals.
18.	Söderström, Marie, et al. (author) Weekday and weekend patterns of diurnal cortisol, activation and fatigue among people scoring high for burnout 2006 In: SJWEH Supplements. - 1795-9926 .- 1795-9918. ; :2, s. 35-40:2, s. 35-40 Journal article (peer-reviewed)abstract Objectives The present pilot study attempted to investigate the diurnal pattern of cortisol, subjective activation, and mental fatigue among workers scoring high for burnout. The purpose was also to relate the cortisol data to objective sleep data.Methods One group with high (N=9) burnout scores and one with low (N=11) such scores were compared during a workday and a day off.Results The high-burnout group showed higher awakening cortisol during the workday than during the weekend. They also showed higher ratings for activation and mental fatigue during the weekend than the low-burnout group. A higher frequency of arousals during the prior sleep was associated with a higher diurnal amplitude and an earlier diurnal peak of cortisol during the workday.Conclusions The present results, which, due to the small sample size, should be interpreted with caution, may indicate that stress-induced frequency of arousal during sleep could contribute to the diurnal amplitude of cortisol. Furthermore, increased activation and mental fatigue during the weekend may reflect impaired recovery, which is of possible importance in the burnout process.
19.	Gyllensten, Kristina, 1977, et al. (author) Older assistant nurses’ motivation for a full or extended working life 2019 In: Ageing and Society. - 0144-686X .- 1469-1779. ; 39:12, s. 2699-2713 Journal article (peer-reviewed)abstract The aim of this study was to explore older workers’ motivation for a full or extended working life. With particular focus on assistant nurses aged 55–64 years, working in the elderly care sector. Focus group interviews were conducted with five different groups of assistant nurses. Inductive thematic analysis was used to analyse the interviews and five main themes were developed from the data: ‘Organisational issues’, ‘Health-related problems’, ‘Private issues’, ‘Meaningfulness and appreciation’ and ‘Social support’. Several of the main themes concerned problems with too high work demands of the assistant nurses. These findings suggest that it is important to improve the working conditions of assistant nurses in order to create a more sustainable working life. Increasing the number of staff and improving recovery opportunities and work–life balance could be important steps to improving the working conditions for this group. Finally, upgrading the competency and professionalism of assistant nurses could help to increase the motivation for a full or extended working life.
20.	Girma Kebede, Betlehem, et al. (author) Communicative challenges among physicians, patients, and family caregivers in cancer care: An exploratory qualitative study in Ethiopia 2020 In: PLoS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 15:3 Journal article (peer-reviewed)abstract Background: Cancer is a growing concern in Ethiopia. Though communication is essential for the treatment process, few studies have looked at communication in Ethiopian cancer care. Due to the large number of patients and scarcity of resources, it is vital to understand how to manage consultations in order to effectively help as many patients as possible in this challenging work environment. Thus, research is needed to analyze and understand the communicative challenges experienced by physicians, patients, and family caregivers, in order to successfully handle patient care in practice. Objective We explore communication in Ethiopian cancer care and present the main challenges faced by physicians, patients, and family caregivers. Methods This explorative qualitative study was conducted at the Oncology Department of the Tikur Anbessa (Black Lion) Specialized Teaching Hospital (TASH) in Addis Ababa, Ethiopia. A triangulation of data collection methods was used: 91 audio-recorded, semi-structured interviews and 21 video-recordings of authentic interactions during hospital rounds. The aim was to obtain as complete a picture as possible of communication from the perspectives of physicians, patients, and family caregivers. The interviews were analyzed using thematic content analysis and the identified themes were supported by excerpts from the transcribed recordings. Results Eight themes emerged from the data. Workload and time pressure, in combination with restricted space for privacy, limited the possibilities for physicians to deliver detailed information and provide emotional support. Furthermore, patient literacy levels, in combination with no or little cancer awareness, financial problems, reliance on traditional and religious treatments, the stigma of cancer, and a fatalistic attitude, resulted in delays in patients seeking care and participating in positive health behaviors, and, subsequently, often resulted in an unwillingness to openly discuss problems with physicians and adhere to treatment. The study also illustrates the paramount role of family in physician-patient communication in Ethiopia. Though family caregivers provide a valuable interpreting support when patients have limited language skills, they can also prevent patients from sharing information with physicians. Another important finding is that family caregivers were often responsible for making decisions about treatment and avoided telling patients about a poor prognosis, believing that conveying bad news may upset them. All of these themes have important implications for the role of ethically acceptable communication in patient-centered care. Conclusions This study has identified a number of serious challenges for successful and ethically acceptable health communication in Ethiopian cancer care. The study contributes to our understanding of the complexity around the role of family, combined with patients’ dependency on family members for communication, support, and access to care, which creates particular ethical dilemmas for the medical staff. The questions raised by this study concern how to organize consultations to achieve patient-centered health communication, while maintaining a constructive alliance with the family and not jeopardizing the patient’s continued access to care. The integration of communication training for medical students in Ethiopia, with a focus on ethical guidelines for family-centered patient consultation suitable for these circumstances, would be an essential step.
21.	KC, Ashish, 1982, et al. (author) Usability, acceptability and feasibility of a novel technology with visual guidance with video and audio recording during newborn resuscitation: a pilot study. 2022 In: BMJ health & care informatics. - : BMJ. - 2632-1009. ; 29:1 Journal article (peer-reviewed)abstract Inadequate adherence to resuscitation for non-crying infants will have poor outcome and thus rationalise a need for real-time guidance and quality improvement technology. This study assessed the usability, feasibility and acceptability of a novel technology of real-time visual guidance, with sound and video recording during resuscitation.A public hospital in Nepal.A cross-sectional design.The technology has an infant warmer with light, equipped with a tablet monitor, NeoBeat and upright bag and mask. The tablet records resuscitation activities, ventilation sound, heart rate and display time since birth. Healthcare providers (HCPs) were trained on the technology before piloting.HCPs who had at least 8 weeks of experience using the technology completed a questionnaire on usability, feasibility and acceptability (ranged 1-5 scale). Overall usability score was calculated (ranged 1-100 scale).Among the 30 HCPs, 25 consented to the study. The usability score was good with the mean score (SD) of 68.4% (10.4). In terms of feasibility, the participants perceived that they did not receive adequate support from the hospital administration for use of the technology, mean score (SD) of 2.44 (1.56). In terms of acceptability, the information provided in the monitor, that is, time elapsed from birth was easy to understand with mean score (SD) of 4.60 (0.76).The study demonstrates reasonable usability, feasibility and acceptability of a technological solution that records audio visual events during resuscitation and provides visual guidance to improve care.
22.	Björnson Skogström, Lisa, 1980, et al. (author) Women’s Experiences of Physical Features in a Specially Designed Birthing Room: A Mixed-Methods Study in Sweden 2022 In: HERD. - : SAGE Publications. - 2167-5112 .- 1937-5867. ; 15:3, s. 193-205 Journal article (peer-reviewed)abstract Aim: To explore women’s experiences of physical features in a birthing room designed to be adaptable to personal wishes and needs during labor and birth. Background: Childbirth is a central life event influenced by numerous factors, including the healthcare environment; however, there is insufficient knowledge on how the physical design affects women during birth. Methods: This study was part of a randomized controlled trial in the Room4Birth research project, including women randomized to receive care in a new birthing room designed with physical features changeable according to personal wishes. Data consisted of responses to two questions analyzed with descriptive statistics (n = 202) and semi-structured interviews analyzed for content (n = 19). Results: A total of 93.6% (n = 189) assessed the physical features in the birthing room as meaningful to a very high or high extent. The overall impression of the room was positive and exceeded women’s expectations. They felt welcomed and strengthened by the room, which shifted the focus to a more positive emotional state. The room differed from traditional hospital birthing rooms, contained familiar features that maintained integrity, and had space for companions. The variety of physical features was appreciated. Of nine listed physical features, the bathtub was ranked most important, followed by the projection of nature scenery, and dimmable lighting, but the room as a whole appeared most important. Conclusions: When planning and designing hospital-based birthing rooms, it is crucial to offer possibilities to adapt the room and physical features according to personal wishes.
23.	Nilsson, Stefan, 1972, et al. (author) Evaluating pictorial support in person-centred care for children (PicPecc) : A protocol for a crossover design study 2021 In: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 11:5 Journal article (peer-reviewed)abstract Introduction This study protocol outlines the evaluation of the pictorial support in person-centred care for children (PicPecc). PicPecc is a digital tool used by children aged 5-17 years to self-report symptoms of acute lymphoblastic leukaemia, who undergo high-dose methotrexate treatments. The design of the digital platform follows the principles of universal design using pictorial support to provide accessibility for all children regardless of communication or language challenges and thus facilitating international comparison.Methods and analysis Both effect and process evaluations will be conducted. A crossover design will be used to measure the effect/outcome, and a mixed-methods design will be used to measure the process/implementation. The primary outcome in the effect evaluation will be self-reported distress. Secondary outcomes will be stress levels monitored via neuropeptides, neurosteroids and peripheral steroids indicated in plasma blood samples; frequency of in-app estimation of high levels of distress by the children; children's use of analgesic medicine and person centeredness evaluated via the questionnaire Visual CARE Measure. For the process evaluation, qualitative interviews will be carried out with children with cancer, their legal guardians and case-related healthcare professionals. These interviews will address experiences with PicPecc in terms of feasibility and frequency of use from the child's perspective and value to the caseworker. Interview transcripts will be analysed using an interpretive description methodology.Ethics and dissemination Ethical approval was obtained from the Swedish Ethical Review Authority (reference 2019-02392; 2020-02601; 2020-06226). Children, legal guardians, healthcare professionals, policymaking and research stakeholders will be involved in all stages of the research process according to Medical Research Council's guidelines. Research findings will be presented at international cancer and paediatric conferences and published in scientific journals.Trial registration ClinicalTrials.gov; NCT04433650.
24.	Smedback, Jonas, et al. (author) Palliative care during the final week of life of older people in nursing homes : A register-based study 2017 In: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 15:4, s. 417-424 Journal article (peer-reviewed)abstract Objective: Our aim was to explore the presence of symptoms, symptom relief, and other key aspects of palliative care during the final week of life among older people residing in nursing homes. Method: Our study employed data from the Swedish Palliative Care Register on all registered individuals aged 60 and older who had died in nursing homes during the years 2011 and 2012. Variables pertaining to monitoring and treatment of symptoms, end-of-life discussions, circumstances around the death, and the individual characteristics of deceased individuals were explored using descriptive statistics. Results: The most common underlying causes of death among the 49,172 deceased nursing home residents were circulatory diseases (42.2%) and dementia (22.7%). The most prevalent symptom was pain (58.7%), followed by rattles (42.4%), anxiety (33.0%), confusion (21.8%), shortness of breath (14.0%), and nausea (11.1%). Pain was the symptom with the highest degree of total relief (46.3%), whereas shortness of breath and confusion were totally relieved in 6.1 and 4.3% of all individuals, respectively. The use of valid instruments for symptom assessment was reported for pain in 12.3% and for other symptoms in 7.8% of subjects. The most prevalent individual prescriptions for injection PRN (pro re nata, according to circumstances) were for pain treatment (79.5%) and rattles (72.8%). End-of-life discussions were performed with 27.3% of all the deceased individuals and with 53.9% of their relatives. Of all individuals, 82.1% had someone present at death, and 15.8% died alone. Of all the nursing home resident deaths recorded, 45.3% died in their preferred place. Significance of results: There were large variations in degree of relief from different symptoms during the final week of life. Pain was the most prevalent symptom, and it was also the symptom with the highest proportion of total/partial relief. Other symptoms were less prevalent but also less well-relieved. Our results indicate a need for improvement of palliative care in nursing home settings, focusing on management of distressing symptoms and promotion of end-of-life discussions.
25.	Sparud Lundin, Carina, 1964, et al. (author) Use of theories in web-based support as a health oriented service for persons with chronic illness 2013 In: The 21st International Conference on Health Promoting Hospitals & Health Services. Body and Mind 22-24 May 2013, Gothenburg, Sweden. - Copenhagen : WHO-CC. ; , s. 229-230 Conference paper (other academic/artistic)
26.	Falk Erhag, Hanna, et al. (author) A Multidisciplinary Approach to Capability in Age and Ageing 2022 Book (other academic/artistic)abstract This open access book provides insight on how to interpret capability in ageing – one’s individual ability to perform actions in order to reach goals one has reason to value – from a multidisciplinary approach. With for the first time in history there being more people in the world aged 60 years and over than there are children below the age of 5, the book describes this demographic trends as well as the large global challenges and important societal implications this will have such as a worldwide increase in the number of persons affected with dementia, and in the ratio of retired persons to those still in the labor market. Through contributions from many different research areas, it discussed how capability depends on interactions between the individual (e.g. health, genetics, personality, intellectual capacity), environment (e.g. family, friends, home, work place), and society (e.g. political decisions, ageism, historical period). The final chapter by the editors summarizes the differences and similarities in these contributions. As such this book provides an interesting read for students, teachers and researchers at different levels and from different fields interested in capability and multidisciplinary research.
27.	Olsson, Maivor, et al. (author) Assessment of Distress and Quality of Life : A Comparison of Self-Assessments by Outpatients with a Schizopsychotic Illness and the Clinical Judgment of Nurses 2015 In: Archives of Psychiatric Nursing. - : Saunders Elsevier. - 0883-9417 .- 1532-8228. ; 29:5, s. 284-289 Journal article (peer-reviewed)abstract The aim of this study was to investigate how self-assessments of perceived distress and quality of life in patients with schizopsychotic illness are associated with nurse assessments of symptoms, function and life situation. Data were obtained through interviews that used evidence-based rating and visual analogue self-rating scales. Descriptive statistics, correlation and regression analyses were used to process the data. The results demonstrated that the patient self-ratings did not correlate with the nurse assessments, and the perceived distress was not affected by remission status. The findings indicate that patient self-assessments are not a sufficient basis for decisions regarding appropriate treatment interventions.
28.	Gerdle, Björn, et al. (author) Who benefits from multimodal rehabilitation - an exploration of pain, psychological distress, and life impacts in over 35,000 chronic pain patients identified in the Swedish Quality Registry for Pain Rehabilitation 2019 In: Journal of Pain Research. - : DOVE Medical Press Ltd.. - 1178-7090. ; 12, s. 891-908 Journal article (peer-reviewed)abstract Background: Chronic pain patients frequently suffer from psychological symptoms. There is no consensus concerning the prevalence of severe anxiety and depressive symptoms and the strength of the associations between pain intensity and psychological distress. Although an important aspect of the clinical picture is understanding how the pain condition impacts life, little is known about the relative importance of pain and psychological symptoms for individual's life impact. The aims of this study were to identify subgroups of pain patients; to analyze if pain, psychological distress, and life impact variables influence subgrouping; and to investigate how patients in the subgroups benefit from treatments.Methods: Background variables, pain aspects (intensity/severity and spreading), psychological distress (depressive and anxiety symptoms), and two life impact variables (pain interference and perceived life control) were obtained from the Swedish Quality Registry for Pain Rehabilitation for chronic pain patients and analyzed mainly using advanced multivariate methods.Results: Based on >35,000 patients, 35%-40% had severe anxiety or depressive symptoms. Severe psychological distress was associated with being born outside Europe (21%-24% vs 6%-8% in the category without psychological distress) and low education level (20.7%-20.8% vs 26%-27% in the category without psychological distress). Dose relationships existed between the two psychological distress variables and pain aspects, but the explained variances were generally low. Pain intensity/severity and the two psychological distress variables were significantly associated (R2=0.40-0.48; P>0.001) with the two life impact variables (pain interference and life control). Two subgroups of patients were identified at baseline (subgroup 1: n=15,901-16,119; subgroup 2: n=20,690-20,981) and the subgroup with the worst situation regarding all variables participated less in an MMRP (51% vs 58%, P<0.001) but showed the largest improvements in outcomes.Conclusion: The results emphasize the need to assess both pain and psychological distress and not take for granted that pain involves high psychological stress in the individual case. Not all patients benefit from MMRP. A better matching between common clinical pictures and the content of MMRPs may help improve results. We only partly found support for treatment resistance in patients with psychological distress burden.
29.	Nilsson, Lisbeth, et al. (author) Driving to Learn in a Powered Wheelchair: The Process of Learning Joystick Use in People With Profound Cognitive Disabilities 2011 In: American Journal of Occupational Therapy. - : AOTA Press. - 0272-9490 .- 1943-7676. ; 65:6, s. 652-660 Journal article (peer-reviewed)abstract The Driving to Learn project explored ways to help people with profound cognitive disabilities practice operating a joystick-operated powered wheelchair. The project used a grounded theory approach with constant comparative analysis and was carried out over 12 yr. The participants were 45 children and adults with profound cognitive disabilities. Reference groups included 17 typically developing infants and 64 participants with lesser degrees of cognitive disability. The data sources included video recordings, field notes, open interviews, and a rich mixture of literature. The findings that emerged yielded strategies for facilitating achievements, an 8-phase learning process, an assessment tool, and a grounded theory of deplateauing explaining the properties necessary for participants to exceed expected limitations and plateaus. Eight participants with profound cognitive disabilities reached goal-directed driving or higher. Participants were empowered by attaining increased control over tool use, improving their autonomy and quality of life.
30.	Eckerblad, Jeanette, et al. (author) To adjust and endure : a qualitative study of symptom burden in older people with multimorbidity 2015 In: Applied Nursing Research. - : Elsevier. - 0897-1897 .- 1532-8201. ; 28:4, s. 322-327 Journal article (peer-reviewed)abstract Context Older people with multimorbidity are vulnerable and often suffer from conditions that produce a multiplicity of symptoms and a reduced health-related quality of life. Objectives The aim of this study is to explore the experience of living with a high symptom burden from the perspective of older community-dwelling people with multi-morbidity.Method A qualitative descriptive design with semi-structured interviews, including 20 community-dwelling older people with multi-morbidity and a high symptom burden. The participants were 79-€“89 years old with a mean of 12 symptoms per person. Data were analyzed using content analyses.Results The experience of living with a high symptom burden revealed the overall theme, â€œTo adjust and endureâ€ and three sub-themes. The first sub-theme was "To feel inadequate and limited". Participants reported that they no longer had the capacity or the ability to manage, and they felt limited and isolated from friends or family. The second sub-theme was "To feel dependent". This was a new and inconvenient experience; the burden they put on others caused a feeling of guilt. The final sub-theme was "To feel dejected". The strength to manage and control their conditions was gone; the only thing left to do was to sit or lie down and wait for it all to pass.Conclusion This study highlights the importance of a holistic approach when taking care of older people with multi-morbidity. This approach should employ a broad symptom assessment to reveal diseases and conditions that are possible to treat or improve.
31.	Pettersson, Cecilia, 1963, et al. (author) Enablers and Barriers in the Physical Environment of Care for Older People in Ordinary Housing: A Scoping Review 2020 In: Journal of Housing for the Elderly. - : Informa UK Limited. - 0276-3893 .- 1540-353X. ; 34:3, s. 332-350 Research review (peer-reviewed)abstract Our aim was to explore enablers and barriers in ordinary housing for older people in care. We systematically searched Scopus, Web of Science, and Google Scholar for relevant published research and gray material. The search resulted in a final sample of eight publications, four of which focused on accessibility for older people with dementia. Thematic analysis resulted in two themes: safety and accessibility. Future studies should focus on modifications to ordinary housing to achieve safe and comfortable environments for people who want to age in place and those who provide them with care.
32.	Andersson, Sten-Ove, et al. (author) Doctors' and nurses' perceptions of military pre-hospital emergency care - When training becomes reality 2017 In: International Emergency Nursing. - : Elsevier. - 1755-599X .- 1878-013X. ; 32, s. 70-77 Research review (peer-reviewed)abstract The aim of this study was to identify physicians' and nurses' perceptions of military pre-hospital emergency care before and after an international mission. A qualitative empirical study with a phenomeno-graphic approach was used. The results after pre-deployment training can be categorised as (1) learning about military medicine and (2) taking care of the casualty. The results after an international mission can be categorised as (1) collaborating with others, (2) providing general health care and (3) improving competence in military medicine. These results indicate that the training should be developed in order to optimise pre-deployment training for physicians and nurses. This may result in increased safety for the provider of care, while at the same time minimising suffering and enhancing the possibility of survival of the injured. (C) 2017 Elsevier Ltd. All rights reserved.
33.	Andersson, Viktor, 1994, et al. (author) Relating person-centredness to quality-of-life assessments and patient-reported outcomes in healthcare: A critical theoretical discussion 2022 In: Nursing Philosophy. - : Wiley. - 1466-7681 .- 1466-769X. ; 23:3 Journal article (peer-reviewed)abstract Engagement with the historical and theoretical underpinnings of measuring quality of life (QoL) and patient-reported outcomes (PROs) in healthcare is important. Ideas and values that shape such practices—and in the endgame, people's lives—might otherwise remain unexamined, be taken for granted or even essentialized. Our aim is to explicate and theoretically discuss the philosophical tenets underlying the practices of QoL assessment and PRO measurement in relation to the notion of person-centredness. First, we engage with the late-modern history of the concept of QoL and the act of assessing and measuring it. Working with the historical method of genealogy, we describe the development of both QoL assessments and PRO measures (PROMs) within healthcare by accounting for the contextual conditions for their possibility. In this way, the historical and philosophical underpinnings of these measurement practices are highlighted. We move on to analyse theoretical and philosophical underpinnings regarding the use of PROMs and QoL assessments in clinical practice, as demonstrated in review studies thereof. Finally, we offer a critical analysis regarding the state of theory in the literature and conclude that, although improved person-centredness is an implied driver of QoL assessments and PROMs in clinical practice, enhanced theoretical underpinning of the development of QoL assessments is called for.
34.	Bylund-Grenklo, Tove, et al. (author) Communication and trust in the care provided to a dying parent: a nationwide study of cancer-bereaved youths. 2013 In: Journal of clinical oncology : official journal of the American Society of Clinical Oncology. - : American Society of Clinical Oncology. - 1527-7755 .- 0732-183X. ; 31:23, s. 2886-94 Journal article (peer-reviewed)abstract To assess children's trust in the care provided to a dying parent during the final week of life in relation to end-of-life medical information about disease, treatment, and death.
35.	Bylund Grenklo, Tove, et al. (author) Unresolved grief and its consequences : A nationwide follow-up of teenage loss of a parent to cancer 6-9 years earlier 2016 In: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 24:7, s. 3095-3103 Journal article (peer-reviewed)abstract PurposeThe early loss of a parent is a tragedy and a serious life event. This study investigated grief resolution and morbidity in cancer-bereaved teenagers 6 to 9 years after the loss of a parent to cancer.MethodsIn a nationwide population-based study of 622 of 851 (73 %) youths who as teenagers 6 to 9 years earlier had lost a parent to cancer, we explored the magnitude of unresolved grief and its association with psychological and physiological morbidity. Participants answered a study-specific anonymous questionnaire including questions about if they had worked through their grief and about their current health. Results Six to nine years post-loss 49 % reported unresolved grief (8 % no and 41 % a little grief resolution). They had, in comparison with youths reporting resolved grief. statistically significantly elevated risks, e.g. for insomnia (sons' relative risk (RR) 2.3, 95 % CI 1.3-4.0; daughters' RR 1.7, 95 % CI 1.1-2.7), fatigue (sons' RR 1.8, 95 % CI 1.3-2.5; daughters' RR 1.4, 95 % CI 1.1-1.7) and moderate to severe depression, i.e. score >9, PHQ-9 (sons' RR 3.6, 95 % CI 1.4-8.8; daughters' RR 1.8, 95 % CI 1.1-3.1). Associations remained for insomnia in sons, exhaustion in daughters and fatigue in both sons and daughters when depression, negative intrusive thoughts and avoiding reminders of the parents' disease or death were included in a model. Conclusions Approximately half of cancer-bereaved youth report no or little grief resolution 6 to 9 years post-loss, which is associated with fatigue, sleeping problems and depressive symptoms.
36.	Falk, Hanna, 1977, et al. (author) Differences in Symptom Distress Based on Gender and Palliative Care Designation Among Hospitalized Patients. 2016 In: Journal of Nursing Scholarship. - : Wiley. - 1527-6546 .- 1547-5069. ; 48:6, s. 569-576 Journal article (peer-reviewed)abstract PURPOSE: To explore patient-reported symptom distress in relation to documentation of symptoms and palliative care designation in hospital inpatients.DESIGN: This cross-sectional study analyzed data from 710 inpatients at two large hospitals in Sweden using the Edmonton Symptom Assessment Scale and the Memorial Symptom Assessment Scale. Chart reviews focused on nurses' and physicians' symptom documentation and palliative turning point.METHODS: Descriptive statistics were calculated for all variables and provided summaries about the sample. Patients were grouped according to gender, age, palliative care designation, and symptom documentation. The t test and chi-square test were used to calculate whether symptom distress varied between groups. A two-way analysis of variance was conducted for multiple comparisons to explore the impact of gender and age on mean symptom distress.FINDINGS: Females reported higher levels of symptom distress than did males related to pain, fatigue, and nausea. When comparing symptom distress between males and females with documentation pertaining to symptoms, there were significant differences implying that females had to report higher levels of symptom distress than males in order to have their symptoms documented.CONCLUSIONS: Females need to report higher levels of symptom distress than do males for healthcare professionals to identify and document their symptoms. It can be hypothesized that females are not receiving the same attention and symptom alleviation as men. If so, this highlights a serious inequality in care that requires further exploration.CLINICAL RELEVANCE: Considering that common reasons why people seek health care are troublesome symptoms of illness, and that the clinical and demographic characteristics of inpatients are changing towards more advanced ages with serious illnesses, inadequate symptom assessment and management are a serious threat to the care quality.
37.	Grim, Katarina, et al. (author) Development- and usability testing of a web-based decision support for users and health professionals in psychiatric services 2017 In: Psychiatric rehabilitation journal. - Washington, DC : American Psychological Association (APA). - 1095-158X .- 1559-3126. ; 40:3, s. 293-302 Journal article (peer-reviewed)abstract Objective: Shared decision making (SMD) related to treatment and rehabilitation is considered a central component in recovery-oriented practice. Although decision aids are regarded as an essential component for successfully implementing SDM, these aids are often lacking within psychiatric services. The aim of this study was to use a participatory design to facilitate the development of a user-generated, web-based decision aid for individuals receiving psychiatric services. The results of this effort as well as the lessons learned during the development and usability processes are reported. Method: The participatory design included 4 iterative cycles of development. Various qualitative methods for data collection were used with potential end users participating as informants in focus group and individual interviews and as usability and pilot testers. Results: Interviewing and testing identified usability problems that then led to refinements and making the subsequent prototypes increasingly user-friendly and relevant. In each phase of the process, feedback from potential end-users provided guidance in developing the formation of the web-based decision aid that strengthens the position of users by integrating access to information regarding alternative supports, interactivity between staff and users, and user preferences as a continual focus in the tool. Conclusions and Implications for Practice: This web-based decision aid has the potential to strengthen service users’ experience of self-efficacy and control as well as provide staff access to user knowledge and preferences. Studies employing participatory models focusing on usability have potential to significantly contribute to the development and implementation of tools that reflect user perspectives.
38.	Hamdan Alshehri, Hanan, et al. (author) Adaptation of a Palliative Care Approach in the Context of Intensive Care: A Systematic Literature Review 2019 In: 16th Word Congress of the European Association for Palliative Care (EAPC). Berlin, May 23-25, Abstract P02-385. Palliative Medicine, vol. 33, issue 1. - : SAGE Publications. Conference paper (other academic/artistic)abstract Background Palliative care is assumed to be an integral part of care in Intensive Care Units (ICU), yet, research still indicates lack knowledge about how to adapt, integrate and adopt palliative care in curative focused contexts such as in intensive care. Aim To identify factors influencing the integration of a palliative care approach in the context of ICU. Method A systematic review based on quantitative and qualitative studies using a thematic synthesis of the articles was performed. The following search term were used: Implementation, palliative care and ICU. In total 1843 articles were screened, and 25 articles were eligible for this review. Result: The findings show that the influencing factors for integrating a palliative care approach are multifaceted. Themes were identified; facilitators and barriers for implementation and adaptation on organizational level (facilitating policies and environmental support, care pathways, prognostication , multidisciplinary team, training and education) and interpersonal level (communication conflict, emotional and spiritual support, person-centred care and patient and family involvement). Conclusion To adopt a palliative care approach into the ICU setting, the integration process requires adaption of organizational support and personal beliefs and attitudes within the entire multi-professional team including the manager as well as patient and family.
39.	Hamdan Alshehri, Hanan, et al. (author) Healthcare Professionals’ Perspective on Palliative Care in Intensive Care Settings: An Interpretive Descriptive Study 2022 In: Global Qualitative Nursing Research. - : SAGE Publications. - 2333-3936. ; 9 Journal article (peer-reviewed)abstract There is a growing need to integrate palliative care into intensive care units and to develop appropriate knowledge translation strategies. However, multiple challenges persist in attempts to achieve this objective. In this study, we aimed to explore intensive care professionals’ perspectives on providing palliative and end-of-life care within an intensive care context. We used an interpretive description approach and interviewed 36 intensive care professionals at four hospitals in Saudi Arabia. Our findings reflect a discourse about end-of-life care driven by a do-not-resuscitate classification and challenges associated with family involvement in care goals. We provide key insights of importance for the development of strategies for the integration and knowledge translation of palliative care into intensive care contexts.
40.	Lundh Hagelin, Carina, et al. (author) Factors influencing attitude toward care of dying patients in first-year nursing students. 2016 In: International journal of palliative nursing. - : Mark Allen Group. - 1357-6321 .- 2052-286X. ; 22:1, s. 28-36 Journal article (peer-reviewed)abstract To describe Swedish first-year undergraduate nursing students' attitudes toward care of dying patients. Possible influences such as age, earlier care experiences, care education, experiences of meeting dying patients and place of birth were investigated.
41.	Lövgren, Malin, et al. (author) Bereaved Siblings' Advice to Health Care Professionals Working With Children With Cancer and Their Families 2016 In: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 33:4, s. 297-305 Journal article (peer-reviewed)abstract Introduction: Siblings of children with cancer experience psychosocial distress during the illness and after bereavement, but often stand outside the spotlight of attention and care. This study explored bereaved siblings' advice to health care professionals (HCPs) working with children with cancer and their families. Materials and Methods: In a nationwide Swedish survey of bereaved siblings, 174/240 (73%) participated. Of these, 108 answered an open-ended question about what advice they would give to HCPs working with children with cancer and their families. In this study, responses to this single question were analyzed using content analysis. Results: The most common advice, suggested by 56% of siblings, related to their own support. One third suggested giving better medical information to siblings. Some siblings wanted to be more practically involved in their brother's/sister's care and suggested that HCPs should give parents guidance on how to involve siblings. Other common advice related to psychosocial aspects, such as the siblings' wish for HCPs to mediate hope, yet also realism, and the importance of asking the ill child about what care they wanted. Conclusion: Information, communication, and involvement should be emphasized by HCPs to support siblings' psychosocial needs in both the health care setting and within the family.
42.	Lövgren, Malin, et al. (author) Care at end of life influences grief : A nationwide long-term follow-up among young adults who lost a brother or sister to childhood cancer 2018 In: Journal of Palliative Medicine. - Larchmont, New York : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 21:2, s. 156-162 Journal article (peer-reviewed)abstract BACKGROUND: A majority of cancer-bereaved siblings report long-term unresolved grief, thus it is important to identify factors that may contribute to resolving their grief.OBJECTIVE: To identify modifiable or avoidable family and care-related factors associated with unresolved grief among siblings two to nine years post loss.DESIGN: This is a nationwide Swedish postal survey.MEASUREMENTS: Study-specific questions and the standardized instrument Hospital Anxiety and Depression Scale. Primary outcome was unresolved grief, and family and care-related factors were used as predictors.SETTING/PARTICIPANTS: Cancer-bereaved sibling (N = 174) who lost a brother/sister to childhood cancer during 2000-2007 in Sweden (participation rate 73%). Seventy-three were males and 101 females. The age of the siblings at time of loss was 12-25 years and at the time of the survey between 19 and 33 years.RESULTS: Several predictors for unresolved grief were identified: siblings' perception that it was not a peaceful death [odds ratio (OR): 9.86, 95% confidence interval (CI): 2.39-40.65], limited information given to siblings the last month of life (OR: 5.96, 95% CI: 1.87-13.68), information about the impending death communicated the day before it occurred (OR: 2.73, 95% CI: 1.02-7.33), siblings' avoidance of the doctors (OR: 3.22, 95% CI: 0.75-13.76), and lack of communication with family (OR: 2.86, 95% CI: 1.01-8.04) and people outside the family about death (OR: 5.07, 95% CI: 1.64-15.70). Depressive symptoms (OR: 1.27, 95% CI: 1.12-1.45) and time since loss (two to four years: OR: 10.36, 95% CI: 2.87-37.48 and five to seven years: OR: 8.36, 95% CI: 2.36-29.57) also predicted unresolved grief. Together, these predictors explained 54% of the variance of unresolved grief.CONCLUSION: Siblings' perception that it was not a peaceful death and poor communication with family, friends, and healthcare increased the risk for unresolved grief among the siblings.
43.	Strang, Susann, 1953, et al. (author) Communication about existential issues with patients close to death-nurses' reflections on content, process and meaning 2014 In: Psycho-Oncology. - : Wiley. - 1057-9249 .- 1099-1611. ; 23:5, s. 562-568 Journal article (peer-reviewed)abstract ObjectiveEncountering dying patients with implicit existential questions requires the nurses to have positive and comfortable attitude to talking about existential issues. This paper describes the nurses' reflections on existential issues in their communication with patients close to death. MethodsNurses (n=98) were recruited from a hospital, hospices and homecare teams. Each nurse participated in five group reflection sessions that were recorded, transcribed and analysed using qualitative content analysis. ResultsThree domains and nine themes emerged. The content domain of the existential conversation covered living, dying and relationships. The process domain dealt with using conversation techniques to open up conversations, being present and confirming. The third domain was about the meaning of existential conversation for nurses. The group reflections revealed a distinct awareness of the value of sensitivity and supportive conversations. ConclusionThis study supports the assertion that experience of talking about existential issues and supporting environment make nurses comfortable when counselling patients close to death. It was obvious from this study that having the courage to be present and confirming, having time and not trying to solve' every existential problem were the most important factors in conversations with the patients close to death. Copyright (c) 2013 John Wiley & Sons, Ltd.
44.	Udo, Camilla, et al. (author) A nationwide study of young adults’ perspectives on participation in bereavement research 2019 In: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 22:10, s. 1271-1273 Journal article (peer-reviewed)abstract BACKGROUND:Young adults represent a minority in research; they are often considered too young or too old for participation. There is sparse information, especially in bereavement research, regarding how this age group perceives research participation and what they consider beneficial or harmful.AIM:To explore how parentally bereaved and nonbereaved young adults perceive research participation.DESIGN:Qualitative analysis of free-text comments collected in a Swedish nation-wide survey.SETTING/PARTICIPANTS:Parentally cancer-bereaved and nonbereaved young adults between 18 and 25 years old living in Sweden.RESULTS:Five categories were identified from the free-text comments, three among the cancer-bereaved: (1) therapeutic to remember the deceased, (2) valuable to help others and improve care, and (3) short-term distressful-long-term beneficial, and two among the nonbereaved: (1) increased reflection and awareness about life, and (2) an opportunity to help others.CONCLUSIONS:It is important to invite young adults to participate in bereavement research. The results suggest that potential harm is minimal and that participating in bereavement research can have a beneficial effect on young adults.
45.	Benkel, Inger, et al. (author) Palliativ vård 2016 Book (other academic/artistic)
46.	Peolsson, Anneli, et al. (author) Return to work a bumpy road : a qualitative study on experiences of work ability and work situation in individuals with chronic whiplash-associated disorders 2021 In: BMC Public Health. - : BioMed Central. - 1471-2458. ; 21:1 Journal article (peer-reviewed)abstract BACKGROUND: Work resumption is a big challenge in the rehabilitation process for individuals with whiplash-associated disorders (WAD). To better meet the needs of individuals with WAD in their return to work process, more knowledge on their experiences and perspectives is needed. The aim of this study was to explore the experiences of work ability and the work situation of individuals who participated in a neck-specific exercise programme for chronic WAD.METHODS: This qualitative study has an exploratory and descriptive design based on data collected through open-ended interviews with 17 individuals with chronic WAD. Data were analysed inductively using conventional content analysis.RESULTS: Analysis of the data yielded the following five categories related to the participants' narratives on their experiences of work ability and their work situation: Return to work - a process of setbacks and bureaucracy; The need to be understood by health care professionals, and to receive a treatment plan; Individual resources are important for work ability; The consequences of reduced work ability; and Working conditions are important for work ability.CONCLUSION: Individuals with chronic WAD often struggle to return to work. Emotional and practical support from stakeholders is imperative and needs to be strengthened. Participating in a neck-specific exercise programme, including being acknowledged and receiving information about WAD, could positively affect the work ability of WAD sufferers. This study has provided management strategies to improve the ability to work for individuals with chronic WAD, and highlights the need to incorporate a healthy and sustainable return to work in the rehabilitation of individuals with WAD, thereby making their return to work a success.
47.	Arveklev Höglund, Susanna, et al. (author) Nursing students experiences of learning about nursing through drama 2018 In: Nurse Education in Practice. - Edinburgh : Churchill Livingstone. - 1471-5953 .- 1873-5223. ; 28:1, s. 60-65 Journal article (peer-reviewed)abstract The ability to understand, interact and create a caring relationship with the patient is a core component in nursing. A shift in nursing education from traditional classroom teaching towards more experiential approaches should be encouraged as this will support learning that links theory with practice. The aim of this study was to describe nursing students' experiences of learning about nursing through drama. This qualitative study was conducted at a university in Sweden. Four focus group interviews were conducted with a total of 16 nursing students and the data was analyzed using a phenomenographic approach.Three themes with their attendant categories emerged through the analysis: "To explore the future professional self", "To develop an understanding of the patient perspective", and "To reflect on the nature of learning". In conclusion this study shows that the use of drama in nursing education can provide opportunities to explore interactions with others which can increase students' self-awareness and ability to reflect on their future professional identity. Acting in role as a patient can provide an opportunity to experience the patient perspective. Also clear was the importance of commitment and engagement ofthe students as a prerequisite for optimizing this form of learning experience through drama
48.	Bakidou, Anna, 1996, et al. (author) On Scene Injury Severity Prediction (OSISP) model for trauma developed using the Swedish Trauma Registry 2023 In: BMC Medical Informatics and Decision Making. - 1472-6947. ; 23:1 Journal article (peer-reviewed)abstract Background: Providing optimal care for trauma, the leading cause of death for young adults, remains a challenge e.g., due to field triage limitations in assessing a patient’s condition and deciding on transport destination. Data-driven On Scene Injury Severity Prediction (OSISP) models for motor vehicle crashes have shown potential for providing real-time decision support. The objective of this study is therefore to evaluate if an Artificial Intelligence (AI) based clinical decision support system can identify severely injured trauma patients in the prehospital setting. Methods: The Swedish Trauma Registry was used to train and validate five models – Logistic Regression, Random Forest, XGBoost, Support Vector Machine and Artificial Neural Network – in a stratified 10-fold cross validation setting and hold-out analysis. The models performed binary classification of the New Injury Severity Score and were evaluated using accuracy metrics, area under the receiver operating characteristic curve (AUC) and Precision-Recall curve (AUCPR), and under- and overtriage rates. Results: There were 75,602 registrations between 2013–2020 and 47,357 (62.6%) remained after eligibility criteria were applied. Models were based on 21 predictors, including injury location. From the clinical outcome, about 40% of patientswere undertriaged and 46% were overtriaged. Models demonstrated potential for improved triaging and yielded AUC between 0.80–0.89 and AUCPR between 0.43–0.62. Conclusions: AI based OSISP models have potential to provide support during assessment of injury severity. The findings may be used for developing tools to complement field triage protocols, with potential to improve prehospital trauma care and thereby reduce morbidity and mortality for a large patient population.
49.	Bergbom, Ingegerd, 1947, et al. (author) First-time pregnant women’s experiences of their body in early pregnancy 2017 In: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 31:3, s. 579-586 Journal article (peer-reviewed)abstract Background: The body of first-time pregnant women is affected in many ways, and the women may not know what to expect. Conversations between women and healthcare personnel about women’s bodily experience in early pregnancy can contribute to increased body knowledge, which may have a positive impact in later stages of their pregnancy and in relation to delivery. The aim of the study was to describe first-time pregnant women’s experiences of their body in early pregnancy (pregnancy weeks 10–14). Method: Twelve women were asked to draw pictures and answer questions freely about their experiences of their first pregnant body. Hermeneutical text interpretation was used to obtain an overall view of the experiences. Findings: A main theme emerged: ‘the body is connected to the cycle of life’. This theme comprised five subthemes: ‘bodily longing and a sense of ambivalence’, ‘being 'doubtful’, ‘welcoming changes in body and mind’, ‘feeling inner strength and struggle to find strength’ and ‘accepting a different body and mind’. This main theme and the subthemes were further interpreted and were understood as an experience of ‘me and my body’. Conclusions: The body reminded the women to take care of it and gave rise to positive thoughts. When the body exhibited uncomfortable reactions and sensations, these were taken as evidence of pregnancy, which was also seen positive but it also triggered a sense of dissatisfaction with the body and a feeling of it becoming alien.
50.	Bäckström, Caroline A., et al. (author) 'To be able to support her, I must feel calm and safe' : Pregnant women's partners perceptions of professional support during pregnancy 2017 In: BMC Pregnancy and Childbirth. - : BioMed Central. - 1471-2393 .- 1471-2393. ; 17:1 Journal article (peer-reviewed)abstract Background: Professional support does not always meet the needs of expectant fathers or co-mothers. The way in which professional support is offered during pregnancy varies internationally, depending on the country. In order to attain a greater understanding of partners' experiences of professional support, it is necessary to further illuminate their perceptions of it. The aim of this study was therefore to explore pregnant women's partners' perceptions of professional support during pregnancy.Methods: Qualitative research design. Partners of pregnant women were interviewed during gestational week 36-38. Individual semi-structured interviews were used to explore the partners' perceptions. The data was analysed using a phenomenographic approach. The study was performed in a county in south-western Sweden; the data collection was conducted from November 2014 to February 2015. Fourteen partners (expectant fathers and co-mothers) of women who were expectant first-time mothers with singleton pregnancies, were interviewed.Results: The findings of the study are presented through four descriptive categories: Ability to absorb adequate information; Possibility to meet and share with other expectant parents; Confirmation of the partner's importance; and Influence on the couple relationship. Using a theoretical assumption of the relationship between the categories showed that the fourth category was influenced by the other three categories.Conclusions: The partners perceived that professional support during pregnancy could influence the couple relationship. The partners' ability to communicate and to experience togetherness with the women increased when the expectant couple received professional support together. The support created also possibilities to meet and share experiences with other expectant parents. In contrast, a lack of support was found to contribute to partners' feelings of unimportance. It was essential that the midwives included the partners by confirming that they were individuals who had different needs for various types of professional support. The partners perceived it easier to absorb information when it was adequate and given with a pedagogic that made the partners become interested and emotionally engaged.

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