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.
Klarare, Anna, et al.
(författare)
Team type, team maturity and team effectiveness in specialized palliative home care : an exploratory questionnaire study
2019
Ingår i: Journal of Interprofessional Care. - : Informa UK Limited. - 1356-1820 .- 1469-9567. ; 33:5, s. 504-511
Tidskriftsartikel (refereegranskat) abstract
To meet complex needs in persons and families within specialist palliative care, care team members are expected to work together in performing a comprehensive assessment of patient needs. Team type (how integrated team members work) and team maturity (group development) have been identified as components in team effectiveness and productivity. The aim of the study reported in this paper was to identify team types in specialist palliative care in Sweden, and to explore associations between team type, team maturity and team effectiveness in home care teams. A national web-based survey of team types, based on Thylefors questionnaire, and a survey of healthcare professionals using the Group Development Questionnaire (GDQ-SE3) to assess team developmental phase, effectiveness and productivity were used in an exploratory cross-sectional design. The participants were: Specialist palliative care teams in Sweden registered in the Palliative Care Directory (n = 77), and members of 11 specialist palliative home care teams. Teams comprised physicians, registered nurses, social workers, physiotherapists and/or occupational therapists, full-or part-time. Our national web survey results showed that the 77 investigated teams had existed from 7 to 21 years, were foremost of medium size and functioned as inter- or transprofessional teams. Results from the 61 HCPs, representing 11 teams, indicated that more mature teams tended to work in an integrated manner, rather than in parallel. The effectiveness ratio varied from 52% to 86% in teams. Recommendations arising from our findings include the need for clarification of team goals and professional roles together with prioritizing the development of desirable psychosocial traits and team processes in clinical settings.
3.
Axelsson, Lena, et al.
(författare)
Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease : A National Registry Study About the Last Week of Life
2018
Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 55:2, s. 236-244
Tidskriftsartikel (refereegranskat) abstract
Context. End-stage kidney disease (ESKD) is characterized by high physical and psychological burden, and therefore, more knowledge about the palliative care provided close to death is needed. Objectives. To describe symptom prevalence, relief, and management during the last week of life, as well as end-of-life communication, in patients with ESKD. Methods. This study was based on data from the Swedish Register of Palliative Care. Patients aged 18 or older who died from a chronic kidney disease, with or without dialysis treatment (International Classification of Diseases, Tenth Revision, Sweden; N18.5 or N18.9), during 2011 and 2012 were selected. Results. About 472 patients were included. Of six predefined symptoms, pain was the most prevalent (69%), followed by respiratory secretion (46%), anxiety (41%), confusion (30%), shortness of breath (22%), and nausea (17%). Of patients with pain and/or anxiety, 32% and 44%, respectively, were only partly relieved or not relieved at all. Of patients with the other symptoms, a majority (55%-84%) were partly relieved or not relieved at all. End-of-life discussions were reported in 41% of patients and 71% of families. A minority died in specialized palliative care: 8% in hospice/inpatient palliative care and 5% in palliative home care. Of all patients, 19% died alone. Bereavement support was offered to 38% of families. Conclusion. Even if death is expected, most patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support. (C) 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
4.
Holm, Maja, et al.
(författare)
Recruiting participants to a randomized controlled trial testing an intervention in palliative cancer care - The perspectives of health care professionals
2017
Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 31, s. 6-11
Tidskriftsartikel (refereegranskat) abstract
Purpose: The recruitment of participants to randomized controlled trials (RCTs) in palliative cancer care by health care professionals is often unsuccessful, which could result in failure to achieve study power. The purpose of this paper is to describe how health care professionals experienced recruiting patients and family caregivers to an RCT in palliative cancer care. Methods: The study had a qualitative explorative design. Ten palliative home care settings were involved in the RCT and data were generated through focus group discussions and interviews with health care professionals who were responsible for the recruitment. The transcripts were analyzed with interpretive descriptive principles. Results: The experiences of the health care professionals reveal that communicating the RCT-design to patients and family caregivers was a challenging part of the recruitment but was considered a process of learning over time. The delicate situation that participants were living under added to the challenge and health care professionals believed that the randomized design was contrary to their normal approach to always offer the best possible support. Conclusions: The results contribute valuable knowledge for future trials in palliative cancer care. To promote successful recruitment, health care professionals may be in need of more training to improve their communication skills and it may be necessary to consider other research designs than the RCT. (C) 2017 Elsevier Ltd. All rights reserved.
5.
Scott Duncan, Therese, et al.
(författare)
Empowered patients and informal care-givers as partners? : A survey study of healthcare professionals' perceptions
2023
Ingår i: BMC Health Services Research. - : BioMed Central (BMC). - 1472-6963. ; 23:1
Tidskriftsartikel (refereegranskat) abstract
BACKGROUND: More knowledge is needed regarding the perceptions of healthcare professionals when encountering empowered patients and informal caregivers in clinical settings. This study aimed to investigate healthcare professionals' attitudes towards and experiences of working with empowered patients and informal caregivers, and perception of workplace support in these situations. METHODS: A multi-centre web survey was conducted using a non-probability sampling of both primary and specialized healthcare professionals across Sweden. A total of 279 healthcare professionals completed the survey. Data was analysed using descriptive statistics and Thematic analysis. RESULTS: Most respondents perceived empowered patients and informal caregivers as positive and had to some extent experience of learning new knowledge and skills from them. However, few respondents stated that these experiences were regularly followed-up at their workplace. Potentially negative consequences such as increased inequality and additional workload were, however, mentioned. Patients' engagement in the development of clinical workplaces was seen as positive by the respondents, but few had own experience of such engagement and considered it difficult to be achieved. CONCLUSION: Overall positive attitudes of healthcare professionals are a fundamental prerequisite to the transition of the healthcare system recognizing empowered patients and informal caregivers as partners.
6.
Hedegaard, Joel, et al.
(författare)
Gendered communicative construction of patients in consultation settings
2014
Ingår i: Women & health. - : Informa UK Limited. - 0363-0242 .- 1541-0331. ; 54:6, s. 513-529
Tidskriftsartikel (refereegranskat) abstract
This study aimed to explore the communication in consultations between patients and health care staff from a gender perspective. We used 23 tape-recorded consultations between patients with Atrial Fibrillation and 5 nurses and 5 physicians at cardiac outpatient clinics at 6 different hospitals in southern Sweden during autumn 2009 to explore the verbal gendered constructions of patients. Through critical discourse analysis, we revealed that the male patients tended to describe their ailments with performance-oriented statements, whereas the female patients usually used emotional-oriented statements. The staff downplayed the male patients' questions and statements, while they acknowledged concern toward the female patients. Both the patients and the staff made conclusions according to a mutual construction. Male patients were constructed as competent, and female patients as fragile through gender-stereotypical communication. Open-ended statements and questions enabled consultations to be less limited by gender stereotypes.
7.
Årestedt, Kristofer, 1968-, et al.
(författare)
Symptom relief and palliative care during the last week of life among patients with heart failure : a national register study
2018
Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert. - 1096-6218 .- 1557-7740. ; 21:3, s. 361-367
Tidskriftsartikel (refereegranskat) abstract
BACKGROUND: Heart failure is a disease with high morbidity, mortality, and physical and psychological burden. More knowledge about the care provided for patients with heart failure close to death is needed.OBJECTIVE: The aim was to describe key aspects of palliative care during the last week of life in patients with heart failure, as reported by healthcare professionals.DESIGN: This is a national register study.SETTING/SUBJECTS: The study included 3981 patients with diagnosed heart failure as the underlying cause of death.MEASUREMENTS: Data were obtained from the Swedish Register of Palliative Care, a national quality register that focuses on patients' last week of life, independent of diagnosis or care setting. The register includes information about care interventions connected with key aspects of palliative care. Data are reported retrospectively by a nurse or physician at the healthcare unit where the patient dies.RESULTS: Only 4.2% of patients with heart failure received specialized palliative care. In their last week of life, symptom prevalence was high, validated scales were seldom used, and symptoms were unsatisfactorily relieved. Around one-fifth (17%) of the patients in the study died alone. Less than half of family members had been offered bereavement support (45%). Moreover, one-third (28%) of the patients and more than half (61%) of the family members were reported to have had end-of-life discussions with a physician during the illness trajectory.CONCLUSION: The results indicate inadequate palliative care for patients with heart failure during their last week of life.
8.
Ericsson, Christoffer R., et al.
(författare)
Paramedics' perceptions of job demands and resources in Finnish emergency medical services : a qualitative study
2022
Ingår i: BMC Health Services Research. - : BioMed Central (BMC). - 1472-6963. ; 22
Tidskriftsartikel (refereegranskat) abstract
Background: Paramedics' fatigue is rising. Stress factors show increased risk for burnout, fatigue, leaving the profession, decreased performance and risk for patient safety. Meanwhile, paramedics' strong community of practice, autonomy and a sense of professional respect are important factors in forming psychological resilience. We aimed to explore Finnish paramedics' perceptions of job demands and resources.Methods: Our study design was descriptive, inductive with a constructivist approach. Using reflexive thematic analysis, we analyse open-ended questions, from a web-based survey and essays written by Finnish paramedic masters-degree students. The study followed the SRQR checklist.Results: We identified paramedics' job demands as stress from a high workload, environmental factors and emotional burden. Performance expectations and a sense of inadequacy were further noted, as well as an organizational culture of hardiness, presenting lack of support and sense of inequality. Paramedics' job resources were pressure management strategies, which were expressed as positive coping mechanisms, agency to affect workload and professional self-actualization, expressed as psychologically safe work community, professional pride and internal drive to professional development.Conclusions: Finnish paramedics exhibit resources and demands related to uncertainty and emotional burden as well as cultural hardiness and psychological safety in communities.Patient or public contribution: This study was done based on survey data collected and analysed by the authors. No patient or public contribution was utilized for this study.
9.
Larsson, Kristina, et al.
(författare)
Health care professionals' experiences of supporting persons with metabolic risk factors to increase their physical activity level : a qualitative study in primary care
2023
Ingår i: Scandinavian Journal of Primary Health Care. - : Taylor & Francis Group. - 0281-3432 .- 1502-7724. ; 41:2, s. 116-131
Tidskriftsartikel (refereegranskat) abstract
Objective: To be regularly physically active is of major importance for the health of people with metabolic risk factors. Many of these persons are insufficiently active and in need of support. This study aimed to explore barriers and facilitators perceived by health care professionals' within Swedish primary care in their work to support persons with metabolic risk factors to increase their physical activity.Design: A qualitative design with focus group discussions was used. The data were analysed using qualitative content analysis with a manifest, inductive approach.Setting: Primary health care in five Swedish healthcare regions.Subjects: Nine physiotherapists, ten physicians and five nurses participated in six digital focus group discussions including two to six participants.Results: Barriers and facilitators to supporting persons with metabolic risk factors to increase their physical activity were found within four generic categories, where the barriers and facilitators related to each generic category: 'Patient readiness for change', 'Supporting the process of change', 'The professional role', and 'The organisation of primary care'.Conclusion: The findings suggests that barriers and facilitators for supporting patients with metabolic risk factors can be found at several levels within primary care, from individual patient and the health care professionals to the organisational level. In the primary care setting, this should be highlighted when implementing support to increase physical activity in people with metabolic risk factors.KEY POINTSHealth care professionals within primary care are in a position to support people with metabolic risk factors to increase their physical activity.Barriers and facilitators to support the patients should be addressed at several levels within primary care.The study highlights factors on multiple levels such as professional responsibility, organisational prioritisation and resources, and the challenge to motivate behaviour change.
10.
Beck, Ingela, et al.
(författare)
Translation and cultural adaptation of the Integrated Palliative care Outcome Scale including cognitive interviewing with patients and staff
2017
Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 16:1
Tidskriftsartikel (refereegranskat) abstract
BACKGROUND: To expand our clinical and scientific knowledge about holistic outcomes within palliative care, there is a need for agreed-upon patient-reported outcome measures. These patient-reported outcome measures then require translation and cultural adaptation, either from country-specific languages to English, or the other way around. The aim of this study was to translate and cross-culturally adapt the Integrated Palliative care Outcome Scale (IPOS) to the Swedish care context.METHODS: Swedish versions of IPOS Patient and IPOS Staff were developed and culturally adapted using recommended guidelines including cognitive interviews with patients (n = 13) and staff (n = 15) from different care contexts including general and specialised palliative care.RESULTS: The comprehension and judgement difficulties identified in the pre-final patient and staff versions were successfully solved during the cognitive interviewing process. IPOS was well accepted by both patients and staff, none of the questions were experienced as inappropriate, and all questions were judged important.CONCLUSIONS: In this study, we translated and culturally adapted the patient and staff versions of IPOS, and demonstrated face and content validity and acceptability of the scale through cognitive interviewing with patients and staff within residential care facility, surgical and specialised palliative home care units. Cognitive interviewing in parallel with patients and staff in rounds, with tentative analysis in between, was a suitable method for identifying and solving challenges with comprehension and evaluation in the pre-final version of IPOS. The Swedish IPOS is now available for use in a variety of clinical care settings.
