1.
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.
2.
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.
3.
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.
4.
Petersson, Jesper, 1974
(författare)
Medicine At A Distance In Sweden: Spatiotemporal Matters In Accomplishing Working Telemedicine
2011
Ingår i: Science Studies. - 0786-3012. ; 24:2, s. 43-62
Tidskriftsartikel (refereegranskat) abstract
This paper examines the accomplishment of making technology work, using the discourse around telemedicine in Swedish healthcare during 1994-2003. The paper will compare four projects launched in the mid-1990s and policymakers’ visions of healthcare through telemedicine. I will employ a sociotechnical approach developed within Actor-Network Theory that understands functioning technology not as something intrinsic but as an outcome of an ongoing process of negotiations. In the paper, I will extend the sociotechnical approach of what constitutes working technology to include spatiotemporal matters. I will also approach the closely related issue of space that has become a concern of Actor-Network Theory scholars interested in the accomplishment and continued workings of technology as it travels. In this discussion, an emphasis on fixed relations (network space) has been challenged by investigations into changing relations (fluid space). This paper suggests that in order to travel well, technology must be both fixed and fluid.⁰
5.
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.
6.
Jemberie, Wossenseged Birhane, 1985-, et al.
(författare)
Substance Use Disorders and COVID-19 : Multi-Faceted Problems Which Require Multi-Pronged Solutions
2020
Ingår i: Frontiers in Psychiatry. - : Frontiers Media S.A.. - 1664-0640. ; 11
Tidskriftsartikel (refereegranskat) abstract
COVID-19 shocked health and economic systems leaving millions of people without employment and safety nets. The pandemic disproportionately affects people with substance use disorders (SUDs) due to the collision between SUDs and COVID-19. Comorbidities and risk environments for SUDs are likely risk factors for COVID-19. The pandemic, in turn, diminishes resources that people with SUD need for their recovery and well-being. This article presents an interdisciplinary and international perspective on how COVID-19 and the related systemic shock impact on individuals with SUDs directly and indirectly. We highlight a need to understand SUDs as biopsychosocial disorders and use evidence-based policies to destigmatize SUDs. We recommend a suite of multi-sectorial actions and strategies to strengthen, modernize and complement addiction care systems which will become resilient and responsive to future systemic shocks similar to the COVID-19 pandemic.
7.
Flink, Maria, et al.
(författare)
Measuring care transitions in Sweden : validation of the care transitions measure
2018
Ingår i: International Journal for Quality in Health Care. - : Oxford University Press. - 1353-4505 .- 1464-3677. ; 30:4, s. 291-297
Tidskriftsartikel (refereegranskat) 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.
8.
Petersson, Jesper, 1974
(författare)
Technospatialities and telehealthcare: Unfolding new spaces of visibility
2016
Ingår i: Information, Communication & Society. - 1369-118X .- 1468-4462. ; 19:6, s. 824-842
Tidskriftsartikel (refereegranskat) abstract
The umbrella term ‘telehealthcare’ denotes an array of information and communication technology-based solutions for digitally connecting citizens with healthcare services. Guided by the conviction that bodies can be translated into digital data which may serve as the basis for clinical decisions made elsewhere, these designs are widely assumed to enable a mode of healthcare delivery which is independent of space and time. Addressing the increasing use of telehealthcare for personalized health monitoring targeting the growing populations of elderly and chronic-care patients, this paper suggests that such designs invariably unfold new spaces of visibility. Based on an analysis of articles published in a leading telehealthcare journal, I argue that these new visibilities do not provide a window onto something that is already there. Instead, such visibilities are shaped by the way techno-medical practices and knowledge production processes are intertwined with a specific politico-economic agenda. The paper explores differences with respect to the positioning of older people and chronic-care patients in relation to two versions of health monitoring. While each version represents an attempt to promote individual freedom, improve health outcomes and ensure a functioning healthcare system, contrasting rationales are involved and different types of spaces are being unfolded.
9.
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.
10.
Nilsson, Thomas, 1954, et al.
(författare)
The precarious practice of forensic psychiatric risk assessments
2009
Ingår i: International Journal of Law and Psychiatry. - : Elsevier BV. - 0160-2527. ; 32:6, s. 400-407
Tidskriftsartikel (refereegranskat) abstract
The development of forensic psychiatric risk assessments is discussed from a clinical point of view using the example of Sweden. A central task in forensic psychiatry has traditionally been to identify dangerous, mentally disordered subjects considered to be prone to commit violent acts. Over time, “dangerousness” has been reworded into “risk”. Nevertheless, such assessments have generally been based on the psychiatric factors characterising the individual patient, while group interaction, situational factors, or social and cultural circumstances, such as the availability of alcohol and drugs, have been largely overlooked. That risk assessments have a focused on people with a diagnosis of “mental disorder” and been used as grounds for coercive measures and integrity violations has somehow been accepted as a matter of course in the public and political debate. Even the basic question whether offenders with a mental disorder are really more prone to criminal recidivism than other offenders seems to have been treated light-handedly and dealt with merely by epidemiological comparisons between groups of persons with broad ranges of psychosocial vulnerability and the general population. Legal texts, instructions and guidelines from the authorities in charge are often vague and general, while actors in the judicial system seem to put their trust in psychiatric opinions. The exchange of professional opinions, general public expectations, and judicial decision processes poses a huge risk for misunderstandings based on divergent expectations and uses of terminology.
