1.
Westgård, Theresa, et al.
(författare)
Comprehensive geriatric assessment pilot of a randomized control study in a Swedish acute hospital : a feasibility study
2018
Ingår i: Pilot and Feasibility Studies. - : Springer Science and Business Media LLC. - 2055-5784. ; 4
Tidskriftsartikel (refereegranskat) 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.
2.
Falk Erhag, Hanna, et al.
(författare)
A Multidisciplinary Approach to Capability in Age and Ageing
2022
Bok (övrigt vetenskapligt/konstnärligt) 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.
3.
Luhr, Kristina, 1959-, et al.
(författare)
Patient preferences for patient participation : Psychometric evaluation of The 4Ps tool in patients with chronic heart or lung disorders
2018
Ingår i: Nordic journal of nursing research. - : Sage Publications. - 2057-1585 .- 2057-1593. ; 38:2, s. 68-76
Tidskriftsartikel (refereegranskat) abstract
The Patient Preferences for Patient Participation tool (The 4Ps) was developed to aid clinical dialogue and to help patients to 1) depict, 2) prioritise, and 3) evaluate patient participation with 12 pre-set items reiterated in the three sections. An earlier qualitative evaluation of The 4Ps showed promising results. The present study is a psychometric evaluation of The 4Ps in patients with chronic heart or lung disease (n¼108) in primary and outpatient care. Internal scale validity was evaluated using Rasch analysis, and two weeks test–retest reliability of the three sections using kappa/weighted kappa and a prevalence- and bias-adjusted kappa. The 4Ps tool was found to be reasonably valid with a varied reliability. Proposed amendments are rephrasing of two items, and modifications of the rating scale in Section 2. The 4Ps is suggested for use to increase general knowledge of patient participation, but further studies are needed with regards to its implementation.
4.
Morténius, Helena, 1966, et al.
(författare)
The utilization of knowledge of and interest in research and development among primary care staff by means of strategic communication - a staff cohort study
2012
Ingår i: Journal of Evaluation in Clinical Practice. - : Wiley. - 1356-1294 .- 1365-2753. ; 18:4, s. 768-775
Tidskriftsartikel (refereegranskat) abstract
Objective The obvious gap between evidence and practice in health care is unfavourable for patient care and requires the promotion of a scientific attitude among health care professionals. The aim of the present study was to determine the utilization of knowledge of and interest in research and development among primary care staff by means of a strategic communication process. Method A cohort consisting of primary care staff (n = 1276) was designed and strategic communication was utilized as a platform over a 7-year period. Quantitative and qualitative methods were taken in account. Results We found that 97% of the staff had gained knowledge of research and development, 60% of whom remained interested in the subject. The oral communication channel was the most powerful for creating research interest. Organizational culture was a barrier to interest in science. Conclusion The study demonstrates a significant increase in knowledge and interest among primary care staff as a result of a strategic communication process. Practice implications Strategic communication should lead to a more evenly distributed research commitment among all health care professionals, thus facilitating communication between them and patients in order to clarify, for example, the causes of disease.
5.
Berbyuk Lindström, Nataliya, 1978, et al.
(författare)
Person- and Family-Centeredness in Ethiopian Cancer Care: Improving Communication, Ethics, Decision Making and Health
2020
Ingår i: JMIR Research Protocols. - : JMIR Publications Inc.. - 1929-0748. ; 9:5
Tidskriftsartikel (refereegranskat) abstract
BACKGROUND: Cancer is a major burden in Ethiopia. The Oncology Department of Tikur Anbessa (Black Lion) Specialized Hospital (TASH) in Addis Ababa is the country's sole specialist unit for cancer care. With only a handful of oncologists, a lack of resources, and a huge patient load, the work is challenging, especially in terms of achieving effective and ethical patient consultations. Patients, usually accompanied by family members, often wait for a long time to receive medical attention and frequently depart without treatment. Handling consultations effectively is essential in order to help patients as much as possible within such limitations. OBJECTIVE: The project addresses three main aims: (1) to enhance and expand the understanding of communicative and associated ethical challenges in Ethiopian cancer care; (2) to enhance and expand the understanding of the implications and use of person- and family-centered solutions to address such communicative challenges in practice, and (3) to plan and evaluate interventions in this area. METHODS: This project develops and consolidates a research collaboration to better understand and mitigate the communicative challenges in Ethiopian cancer care, with a focus on the handling and sharing of decision making, and ethical tensions between patients, staff, and family. Using theoretical models from linguistics, health communication, and health care ethics, multiple sources of data will be analyzed. Data sources currently include semi-structured interviews with the Ethiopian staff, patients, and family caregivers (91), survey data on cancer awareness (150) and attitudes to breaking bad news (450), and video-recordings of medical consultations (45). In addition, we will also develop clinical and methodological solutions to formulate educational interventions. RESULTS: The project was awarded funding by the Swedish Research Council in December 2017 for the period 2018-2021. The research ethics board in Sweden and in Ethiopia approved the conduct of the project in May 2018. The results from the studies will be published in 2020 and 2021. CONCLUSIONS: The project is a first step towards producing unique and seminal knowledge for the specific context of Ethiopia in the area of physician-patient communication research and ethics. It contributes to an understanding of the complexity around the role of family and ethical challenges in relation to patient involvement and decision making in Ethiopia. Improved knowledge in this area can provide a fundamental model for ways to improve cancer care in many other low resource settings in Africa and the Middle East, which share central cultural prerequisites (such as a strong patriarchal family structure, combined with strong and devout religiosity). The project will also serve to develop greater understanding about current challenges in Western health systems associated with greater family and patient participation in decision making. In addition, the project will also contribute to improving the education of Ethiopian health professionals working in cancer care by developing a training program to help them better understand and respond to identified challenges associated with communication.
6.
Hagström, Josefin, et al.
(författare)
Adolescents' and Young Adults' Experiences of Offense from Reading Their Health Records Online
2024
Ingår i: Studies in Health Technology and Informatics. - : IOS Press. - 0926-9630 .- 1879-8365. ; 310, s. 1422-1423
Tidskriftsartikel (refereegranskat) abstract
Patients feeling offended by reading records online is a concern among healthcare professionals, however previously published work has focused on adult patients. Here, a survey was used to explore and compare experiences of offense among adolescents (15-19 years old) and young adults (20-24 years old). Findings indicated that while the ratio of those offended did not differ between adolescents and young adults, reasons for feeling offended did.
7.
Josephsson, Staffan, et al.
(författare)
Using Ricoeur's notions on narrative interpretation as a resource in supporting person-centredness in health and social care.
2022
Ingår i: Nursing Philosophy. - : Wiley. - 1466-769X .- 1466-7681. ; 23:3
Tidskriftsartikel (refereegranskat) abstract
This article suggests a shift in focus from stories as verbal accounts to narrative interpretation of the every day as a resource for achieving person-centred health and social care. The aim is to explore Ricoeur's notion of narrative and action, as expressed in his arguments on a threefold mimesis process, using this as a grounding for the use of narration to achieve person-centredness in health and social care practice. This focus emerged from discussions on this matter at the IPONS conference in Gothenburg, 2021. Based on philosophical resources from Ricoeur's notions of narrative and action developed in his arguments on a threefold mimesis process, we propose a wider use of stories in health and social care practices. We suggest expanding from only focusing on verbal accounts to focusing on narrative as a human way to interpret and make sense of everyday life and circumstances and to communicate possible meanings. We discuss how such complementary focus can be a resource in getting patients involved and collaborating in their health and social care and thereby help develop person-centred practices.
8.
Mohammad, Salahuddin, et al.
(författare)
Job satisfaction and job tenure of people with mental health disorders : a UK Biobank cohort study
2023
Ingår i: Scandinavian Journal of Public Health. - : Sage Publications. - 1403-4948 .- 1651-1905. ; 51:8, s. 1248-1257
Tidskriftsartikel (refereegranskat) abstract
Aims:Job satisfaction plays an important role for the life quality and health of working individuals. While studies have shown that self-reported mental health conditions such as stress, anxiety and depression are associated with job satisfaction, a large population-based study exploring and comparing self-reported physician posed diagnosed conditions and their association with job satisfaction and job tenure is missing. This study addresses the gap along with exploring the impact of the neurotic personality trait and other possible contributing factors.Methods:Sixteen mental health disorders diagnosed by physicians, categorised into four major groups were investigated in relation to employment status (108,711 participants) and in relation to job satisfaction and job tenure (34,808 participants). Analyses were performed using linear regression adjusted for age, sex, townsend deprivation index, body mass index, education, physical activity, work hours and neuroticism.Results:Neurotic and stress disorders, eating disorders and other mental health disorders were strongly associated with lower job satisfaction and shorter job tenure in both unadjusted and adjusted analyses. Neuroticism was strongly linked to job satisfaction but was not associated with job tenure.Conclusions:Study findings clarify the complex relationship of mental health with job satisfaction and job tenure, which is very important to understand in designing measures to improve working life participation of individuals with mental health issues.
9.
Pasquini, Mirko, 1991
(författare)
Like ticking time bombs. Improvising structural competency to ‘Defuse’ the exploding of violence against emergency care workers in Italy
2023
Ingår i: Global Public Health. - : Informa UK Limited. - 1744-1692 .- 1744-1706. ; 18:1
Tidskriftsartikel (refereegranskat) abstract
While violence against health care workers is being progressively recognised as a serious problem in the healthcare industry, it remains an under-studied area of enquiry in global public health. Anthropologists have long observed that violence toward patients is tied to institutional care practises in multiple ways, including repression, misrecognition and silencing. But research on health care staff’s experience of violence is still lacking. This article aims to address this literature gap by providing research on the daily experience of vulnerability to violence that health care providers face during their work. To do so, the paper ethnographically explores the effects and perception of violence against health care workers in an emergency department (ED) in northern Italy, a place with a dramatic escalation of violent incidents. The article illustrates how the ED staff attended to the experience of suffering of potentially violent patients. In so doing, ED professionals shifted the responsibility of violence against them from violent individuals to violent structures shaping health inequities. The paper thus argues that ED professionals display a structural competence perspective when dealing with violence.
10.
Svedbo Engström, Maria, 1980, et al.
(författare)
A disease-specific questionnaire for measuring patient-reported outcomes and experiences in the Swedish National Diabetes Register: Development and evaluation of content validity, face validity, and test-retest reliability
2018
Ingår i: Patient Education and Counseling. - : Elsevier BV. - 0738-3991 .- 1873-5134. ; 101:1, s. 139-146
Tidskriftsartikel (refereegranskat) abstract
Objective: To describe the development and evaluation of the content and face validity and test-retest reliability of a disease-specific questionnaire that measures patient-reported outcomes and experiences for the Swedish National Diabetes Register for adult patients who have type 1 or type 2 diabetes. Methods: In this methodological study, a questionnaire was developed over four phases using an iterative process. Expert reviews and cognitive interviews were conducted to evaluate content and face validity, and a postal survey was administered to evaluate test-retest reliability. Results: The expert reviews and cognitive interviews found the disease-specific questionnaire to be understandable, with relevant content and value for diabetes care. An item-level content validity index ranged from 0.6-1.0 and a scale content validity/average ranged from 0.7-1.0. The fourth version, with 33 items, two main parts and seven dimensions, was answered by 972 adults with type 1 and type 2 diabetes (response rate 61%). Weighted Kappa values ranged from 0.31-0.78 for type 1 diabetes and 0.27-0.74 for type 2 diabetes. Conclusions: This study describes the initial development of a disease-specific questionnaire in conjunction with the NDR. Content and face validity were confirmed and test-retest reliability was satisfactory. Practice implications: With the development of this questionnaire, the NDR becomes a clinical tool that contributes to further understanding the perspectives of adult individuals with diabetes. (c) 2017 Elsevier B.V. All rights reserved.
11.
Hallgren, Jenny, 1978-, et al.
(författare)
In Hospital We Trust : Experiences of older peoples' decision to seek hospital care
2015
Ingår i: Geriatric Nursing. - : Elsevier. - 0197-4572 .- 1528-3984. ; 36:4, s. 306-311
Tidskriftsartikel (refereegranskat) abstract
The purpose of this study was to explore how older people experience and perceive decisions to seek hospital care while receiving home health care. Twenty-two Swedish older persons were interviewed about their experiences of decision to seek hospital while receiving home health care. The interviews were analyzed using qualitative content analysis. The findings consist of one interpretative theme describing an overall confidence in hospital staff to deliver both medical and psychosocial health care, In Hospital We Trust, with three underlying categories: Superior Health Care, People's Worries, and Biomedical Needs. Findings indicate a need for establishing confidence and ensuring sufficient qualifications, both medical and psychological, in home health care staff to meet the needs of older people. Understanding older peoples' arguments for seeking hospital care may have implications for how home care staff address individuals' perceived needs. Fulfillment of perceived health needs may reduce avoidable hospitalizations and consequently improve quality of life.
12.
Hovlin, Lina, et al.
(författare)
Mutual trust is a prerequisite for nurses’ sense of safety and work satisfaction – Mobile Integrated Care Model : A qualitative interview study
2023
Ingår i: Nordic journal of nursing research. - : Sage Publications. - 2057-1585 .- 2057-1593. ; 43:1, s. 1-8
Tidskriftsartikel (refereegranskat) abstract
An increasing number of older persons have complex health care needs. This, along with the organizational principle of remaining at home, emphasizes the need to develop collaborations among organizations caring for older persons. A health care model developed in Sweden, the Mobile Integrated Care Model aims to promote work in teams across organizations. The aim of the study was to describe nurses’ experiences in working and providing health care in the Mobile Integrated Care Model in the home with home health care physicians. Semi-structured interviews were conducted with 18 nurses and analyzed through qualitative content analysis. The method was compliant with the COREQ checklist. A mutually trusting collaboration with physicians, which formed person-centered care, created work satisfaction for the nurses. Working within the Mobile Integrated Care Model was negatively impacted by being employed by different organizations, lack of time to provide health care, and physicians’ person-centered work abilities.
13.
Hovlin, Lina, et al.
(författare)
The role of the home health care physician in mobile integrated care : a qualitative phenomenograpic study
2022
Ingår i: BMC Geriatrics. - : BioMed Central (BMC). - 1471-2318. ; 22:1
Tidskriftsartikel (refereegranskat) abstract
Background: An increasing older population, along with the organizational principle of remaining at home, has moved health care from institutions into the older person’s home, where several health care providers facilitate care. The Mobile Integrated Care Model strives to provide cost-efficient, coherent, person-centered health care in the home. In the integrated care team, where the home health care physician is the medical authority, several health care professions work across organizational borders. Therefore, the aim of this study was to describe Home Health Care Physicians perceptions of working and providing health care in the Mobile Integrated Care Model, as well as perceptions of participating in and forming health care.Methods: A phenomenographic qualitative study design, with semi-structured interviews using an interview guide.Results: Working within Mobile Integrated Care Model was a different way of working as a physician. The physicians’ role was to support the patient by making safe medical decisions. Physicians described themselves as a piece in the team puzzle, where the professional knowledge of others was crucial to give quality health care. Being in the patients’ homes was expressed as adding a unique dimension in the provision of health care, and the physicians learned more about the patients by meeting them in their homes than at an institution. This aided the physicians in respecting patient autonomy in medical decision making, even though the physicians sometimes disregarded patient autonomy in favor of their own medical experience. There was a divided view on next of kin participation among the home health care physicians, ranging from always including to total absence of involving next of kin in decision making.Conclusions: The home health care physicians described the Mobile Integrated Care Model as the best way to work, but there was still a need for additional resources and structure when working in different organizations. The need for full-time employment, additional time or hours, more equipment, access to each other’s medical records, and additional collaboration with other health care providers were expressed, which could contribute to increased work satisfaction and facilitate further development of person-centered care in the Mobile Integrated Care Model.
14.
Liljeroos, Maria
(författare)
Caring needs in patient-partner dyads affected by heart failure : An evaluation of the long-term effects of a dyadic psycho-educational intervention
2017
Doktorsavhandling (övrigt vetenskapligt/konstnärligt) 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.
15.
Pauli Bock, Emelie, et al.
(författare)
Literature Review : Evidence-Based Health Outcomes and Perceptions of the Built Environment in Pediatric Hospital Facilities.
2021
Ingår i: Journal of Pediatric Nursing. - : Elsevier. - 0882-5963 .- 1532-8449. ; 61, s. e42-e50
Tidskriftsartikel (refereegranskat) 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.
16.
17.
Östlund, Gunnel, 1956-, et al.
(författare)
Lived experiences of sex life difficulties in men and women with early RA – The Swedish TIRA Project
2015
Ingår i: Musculoskeletal Care. - : Wiley. - 1478-2189 .- 1557-0681. ; 13:4, s. 248-257
Tidskriftsartikel (refereegranskat) abstract
Background: Men and women with rheumatoid arthritis (RA) experience restrictions in everyday life, in spite of the development of new medications. Recent research has described in detail how participation limitations are experienced in everyday life from a patient perspective. However, knowledge of how sex and intimate relationships are affected is still scarce.Objectives: The aim of the present study was to explore sex life experiences in relation to sexual function and sexual relationships in men and women with early RA.Methods: The study formed part of TIRA-2 (the Swedish acronym for the prospective multicentre early arthritis project). The data collection included 45 interviews with 21 men and 24 women, aged 20–63, which were recorded and transcribed verbatim. The critical incident technique was used to collect data, and content analysis to categorize the results.Results: Half the participants stated that RA affected their sex life. The general descriptions formed five categories: sex life and tiredness; sex life and ageing; emotional consequences of impaired sexual function; facilitators of sexual function and sexual relationships; and strain on the sexual relationship.Conclusions: Sex life is affected in early RA, in spite of new effective treatment strategies. New strategies of communication, assessment and self-managing interventions concerning the sex lives of patients with RA need to be implemented by a multidisciplinary healthcare team.
18.
Skånberg Dahlstedt, Ami, 1967
(författare)
Älskade Vampyr - om livet med ett barn med diabetes typ 1
2010
Bok (övrigt vetenskapligt/konstnärligt) abstract
Älskade vampyr skildrar hur tillvaron ställs på ända för en svensk småbarnsfamilj när yngste sonen får en allvarlig diagnos: diabetes typ 1. Föräldrar och storebror tvingas anpassa sig till den nya situationen och framförallt vänja sig vid osäkerheten och rädslan för komplikationer som sjukdomen för med sig. Rutiner, kontroller och insulinsprutor blir sakta men säkert en naturlig del av tillvaron och de lyckas hålla ihop och hålla modet uppe. Och mer än så. De ger sig ut på äventyr tillsammans. Till Australien. Läsaren får en god inblick i hur det kan gå till när syskon, släkt, vänner, skol- och vårdpersonal, grannar med flera tvingas förhålla sig till den nya situationen - som väldigt många saknar kunskap om. Röster från läsare "Ami tröstar, förklarar, läker och bekräftar att man får lov att känna precis som man vill. Det är en bok som tar hand om känslorna när någon man älskar får en allvarlig sjukdom. Hennes bok handlar inte bara om diabetes, den handlar om alla som får kämpa för sin rätt att vara sig själva." Mia Skäringer, skådespelare och granne "Boken är skriven ur ett intressant och annorlunda perspektiv där författaren på ett gripande sätt tar med oss djupt in i vardagsdetaljerna hos en familj som lever med diabetes. Det är säkert många föräldrar som har barn med diabetes som kommer att känna igen sig i hur man från början kastas mellan hopp och förtvivlan, för att så småningom få ett nytt fäste i vardagen med diabetes. Diabeteslägret och sedan insulinpumpen blev en vändpunkt för Egil, och jag kan bara hålla med - pump är den bästa typen av behandling för ett barn med diabetes och på diabetesläger träffar man kompisar som förstår hur det är att ha diabetes." Ragnar Hanås, barnläkare och expert på diabetes typ 1
19.
Kylén, Maya, et al.
(författare)
The importance of the built environment in person-centred rehabilitation at home : study protocol
2019
Ingår i: International Journal of Environmental Research and Public Health. - : MDPI AG. - 1661-7827 .- 1660-4601. ; 16:13
Tidskriftsartikel (refereegranskat) abstract
Health services will change dramatically as the prevalence of home healthcare increases. Only technologically advanced acute care will be performed in hospitals. This-along with the increased healthcare needs of people with long-term conditions such as stroke and the rising demand for services to be more person-centred-will place pressure on healthcare to consider quality across the continuum of care. Research indicates that planned discharge tailored to individual needs can reduce adverse events and promote competence in self-management. However, the environmental factors that may play a role in a patient's recovery process remain unexplored. This paper presents a protocol with the purpose to explore factors in the built environment that can facilitate/hinder a person-centred rehabilitation process in the home. The project uses a convergent parallel mixed-methods design, with ICF (International Classification of Functioning, Disability and Health) and person-environment theories as conceptual frameworks. Data will be collected during home visits 3 months after stroke onset. Medical records, questionnaires, interviews and observations will be used. Workshops will be held to identify what experts and users (patients, significant others, staff) consider important in the built environment. Data will be used to synthesise the contexts, mechanisms and outcomes that are important to support the rehabilitation process at home.
20.
Nordin, Susanna, et al.
(författare)
The importance of the physical environment to support individualised care
2018
Ingår i: Individualized Care: Theory, Measurement, Research and Practice. - Cham : Springer International Publishing. - 9783319898995 - 9783319898988 ; , s. 207-215
Bokkapitel (övrigt vetenskapligt/konstnärligt) abstract
The physical environment is an important part of individualised care. Creating care environments tailored towards the individual person’s needs is essential for high-quality care and is increasingly recognised as being associated with improved health and well-being among older people. Today, care should be holistic and view the person behind the disease, taking that person’s perspective and treating the patient as a unique individual. Despite the emerging focus on individualised care approaches, the physical environment is still not considered as an integral part of care, and relatively little attention has been paid to environmental aspects. However, the physical environment has a great potential to facilitate or restrict care processes in a broad range of care settings, not least in residential care facilities for older people. The present chapter focuses on ways to support the individual in terms of the physical environment.
21.
Olsson, Maivor, et al.
(författare)
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
Ingår i: Archives of Psychiatric Nursing. - : Saunders Elsevier. - 0883-9417 .- 1532-8228. ; 29:5, s. 284-289
Tidskriftsartikel (refereegranskat) 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.
22.
Beernaert, Kim, et al.
(författare)
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
Ingår i: Journal of Clinical Oncology. - : American Society of Clinical Oncology. - 0732-183X .- 1527-7755. ; 35:27, s. 3136-3142
Tidskriftsartikel (refereegranskat) 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.
23.
Girma Kebede, Betlehem, et al.
(författare)
Communicative challenges among physicians, patients, and family caregivers in cancer care: An exploratory qualitative study in Ethiopia
2020
Ingår i: PLoS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 15:3
Tidskriftsartikel (refereegranskat) 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.
24.
Lind, Susanne, et al.
(författare)
Implementation of the integrated palliative care outcome scale in acute care settings - a feasibility study
2018
Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 16:6, s. 698-705
Tidskriftsartikel (refereegranskat) 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.
25.
Kultur och hälsa i praktiken
2016
Samlingsverk (redaktörskap) (övrigt vetenskapligt/konstnärligt) abstract
Intresset för området kultur och hälsa är stort. Åtskilliga verksamheter i kommuner och landsting arbetar aktivt med kultur och hälsa. Därför blir det allt viktigare att ta tillvara på den kunskap som skapas inom dessa verksamheter och att möjliggöra ett utbyte av erfarenheter. "Kultur och hälsa i prakten" presenterar i fjorton kapitel hur man kan arbeta med kultur och hälsa inom olika verksamheter som exempel på gränsöverskridande samarbeten mellan praktik och forskning. Kapitalförfattarna är både förankrade i ett konkret verksamhetsområde och i akademisk forskning. "Kultur och hälsa i praktiken" ger en beskrivning av praktiska verksamheter utifrån aktuell forskning. Den syftar till inspiration såväl som fördjupad kunskap för praktiker, forskare, beslutsfattare, kulturutövare, journalister och hälso- och sjukvårdspersonal.
