| 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. |
- 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.
|
|
| 3. |
- 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.
|
|
| 4. |
- Omerov, Pernilla, et al.
(författare)
-
Preparatory Studies to a Population-Based Survey of Suicide-Bereaved Parents in Sweden.
- 2013
-
Ingår i: Crisis. - : Hogrefe Publishing Group. - 0227-5910 .- 2151-2396. ; 34:3, s. 200-210
-
Tidskriftsartikel (refereegranskat)abstract
- Background: There is a need for evidence-based guidelines on how professionals should act following a suicide. In an effort to provide empiric knowledge, we designed a nationwide population-based study including suicide-bereaved parents. Aim: To describe the process from creating hypotheses through interviews to the development of a population-based questionnaire. Method: We used interviews, qualitative analysis and various means of validation to create a study-specific questionnaire to be used in a nonselected nationwide population of suicide-bereaved parents and a control population of nonbereaved (N = 2:1). The Swedish Register of Causes of Death and the Multigeneration Register were used to identify eligible individuals. All presumptive participants received a letter of invitation followed by a personal contact. Results: We developed a questionnaire covering the participants' perception of participation, their daily living, psychological morbidity, professional actions, and other experiences in immediate connection to the time before and after the suicide. Almost three out of four parents (bereaved = 666, nonbereaved = 377) responded to the questionnaire. Conclusions: By involving parents early in the research process we were able to create a questionnaire that generated a high participation rate in a nationwide population-based study that might help us to answer our hypotheses about bereavement after suicide.
|
|
| 5. |
- Klarare, Anna, et al.
(författare)
-
Team Interactions in Specialized Palliative Care Teams: A Qualitative Study
- 2013
-
Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 16:9, s. 1062-1069
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Teamwork is a standard of care in palliative care and that is emphasized by leading organizations. When interdisciplinary teams communicate their varied assessments, outcomes may be more than additive due to the synthesis of information. Interprofessionality does not guarantee multidimensionality in health care interventions, however, and that interprofessional teams promote collaboration may be questioned. Aim: The aim was to explore team interaction among team members in specialized palliative care teams. Design: Semistructured interviews were conducted with health professionals working in specialized palliative home care teams. The interviews were analyzed by content analysis. Setting/participants: Participants were recruited from specialized palliative care units in Sweden. The 15 interviewees included 4 men and 11 women. Physcians, nurses, paramedical staff, and social workers were included. Results: Organizational issues like resources and leadership have a great impact on delivery of care. Competence was mirrored in education, collaboration, approach, and support within the team; while communication was described as key to being a team, resolving conflict, and executing palliative care. Conclusion: Communication and communication patterns within the team create the feeling of being a team. Team climate and team performance are significantly impacted by knowledge and trust of competence in colleagues, with other professions, and by the available leadership. Proportions of different health professionals in the team have an impact on the focus and delivery of care. Interprofessional education giving clarity on one's own professional role and knowledge of other professions would most likely benefit patients and family caregivers.
|
|
| 6. |
- 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.
|
|
| 7. |
- Lederman, Jakob, et al.
(författare)
-
Assessing non-conveyed patients in the ambulance service : a phenomenological interview study with Swedish ambulance clinicians
- 2019
-
Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 9:9, s. 1-8
-
Tidskriftsartikel (refereegranskat)abstract
- Objectives To combat overcrowding in emergency departments, ambulance clinicians (ACs) are being encouraged to make on-site assessments regarding patients' need for conveyance to hospital, and this is creating new and challenging demands for ACs. This study aimed to describe ACs' experiences of assessing non-conveyed patients. Design A phenomenological interview study based on a reflective lifeworld research approach. Setting The target area for the study was Stockholm, Sweden, which has a population of approximately 2.3 million inhabitants. In this area, 73 ambulances perform approximately just over 200000 ambulance assignments annually, and approximately 25000 patients are non-conveyed each year. Informants 11 ACs. Methods In-depth open-ended interviews. Results ACs experience uncertainty regarding the accuracy of their assessments of non-conveyed patients. In particular, they fear conducting erroneous assessments that could harm patients. Avoiding hasty decisions is important for conducting safe patient assessments. Several challenging paradoxes were identified that complicate the non-conveyance situation, namely; responsibility, education and feedback paradoxes. The core of the responsibility paradox is that the increased responsibility associated with non-conveyance assessments is not accompanied with appropriate organisational support. Thus, frustration is experienced. The education paradox involves limited and inadequate non-conveyance education. This, in combination with limited support from non-conveyance guidelines, causes the clinical reality to be perceived as challenging and problematic. Finally, the feedback paradox relates to the obstruction of professional development as a result of an absence of learning possibilities after assessments. Additionally, ACs also described loneliness during non-conveyance situations. Conclusions This study suggests that, for ACs, performing non-conveyance assessments means experiencing a paradoxical professional existence. Despite these aggravating paradoxes, however, complex non-conveyance assessments continue to be performed and accompanied with limited organisational support. To create more favourable circumstances and, hopefully, safer assessments, further studies that focus on these paradoxes and non-conveyance are needed.
|
|
| 8. |
- Lederman, Jakob, et al.
(författare)
-
Non-conveyance in the ambulance service : a population-based cohort study in Stockholm, Sweden
- 2020
-
Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 10:7
-
Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: Non-conveyed patients represent a significant proportion of all patients cared for by ambulance services in the western world. However, scientific knowledge on non-conveyance is sparse. Therefore, the aim of this study was to describe the prevalence of non-conveyance, investigate associations and compare patients' characteristics, drug administration, initial problems and vital signs between non-conveyed and conveyed patients.DESIGN: A population-based retrospective cohort study.SETTING: The study setting area, Stockholm, Sweden, has a population of 2.3 million inhabitants, with seven emergency hospitals. Annually, approximately 210 000 assignments are performed by 73 ambulances. All ambulance assignments performed from 1 January to 31 December 2015 were included.RESULTS: In total, 23 603 ambulance assignments ended in non-conveyance-13.8% of all ambulance assignments performed in 2015. Compared with conveyed patients, non-conveyed patients were younger and more often female (median age 50.1 years for non-conveyed vs 61.7 years for conveyed; female=52 %, both p values <0.001). Approximately half of all ambulance assignments ending in non-conveyance were initially prioritised and dispatched as the highest priority. Non-conveyed patients were more often assessed by ambulance clinicians as presenting non-specific symptoms or symptoms related to psychiatric problems. Low blood glucose levels were highly associated with non-conveyance (adjusted OR (AOR): 15; 95 % CI 11.18 to 20.13), although non-conveyed patients presented abnormal vital signs across all categories of vital signs. Moreover, drugs were more often administered to younger non-conveyed patients. Older patients were more often conveyed and administered drugs once conveyed (AOR: 1.29; 95 % CI 1.07 to 1.56).CONCLUSIONS: This study shows that non-conveyed patients represent a non-negligible proportion of all patients in contact with ambulance services. In general, most cases of non-conveyance occur at the highest dispatch level, to a large extent involve younger patients, and features problems assessed by ambulance clinicians as non-specific or related to psychiatric symptoms.
|
|
| 9. |
- 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.
|
|
| 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.
|
|
