| 1. |
- Alvariza, Anette, et al.
(författare)
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A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool
- 2018
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 35, s. 1-8
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The Carer Support Needs Assessment Tool (CSNAT) was developed for use among family caregivers in palliative care for assessment of their support needs. The purpose of this study was to translate and evaluate the validity and reliability of the CSNAT in a sample of Swedish family caregivers and nurses in a palliative care context. Methods: Data for this validation study was collected during 2016 in the context of palliative home care in two larger Swedish cities. The study was conducted in three stages to reach conceptual, semantic, operational and measurement equivalence between the original UK version and the Swedish version. Stage I consisted of translation to Swedish. In Stage II, cognitive interviews were performed with 8 family caregivers and 10 nurses. Data were analyzed based on relevance, clarity and sensitivity. In Stage III, the CSNAT and related self-rating measures (caregiver burden, preparedness for caregiving and quality of life) were completed by 118 family caregivers. Data quality, construct validity and test-retest reliability were evaluated. Results: The CSNAT items were considered relevant and useful to identify areas of support needs. The Swedish CSNAT showed sound psychometric properties with satisfactory data quality and few problems with missing data across items (1.8%-6.1%). All items except one correlated as expected (rho>0.3) with caregiver burden, supporting construct validity. All items had satisfactory test-retest reliability (κw=0.45-0.75). Conclusions: This study further adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family caregivers in palliative care. © 2018 Elsevier Ltd
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| 2. |
- Axelsson, Lena, et al.
(författare)
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Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease : A National Registry Study About the Last Week of Life
- 2018
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 55:2, s. 236-244
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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.
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| 3. |
- Friberg, Febe, 1950, et al.
(författare)
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Exploration of dynamics in a complex person-centred intervention process based on health professionals' perspectives
- 2018
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Ingår i: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 18:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: The assessment and evaluation of practical and sustainable development of health care has become a major focus of investigation in health services research. A key challenge for researchers as well as decision-makers in health care is to understand mechanisms influencing how complex interventions work and become embedded in practice, which is significant for both evaluation and later implementation. In this study, we explored nurses' and surgeons' perspectives on performing and participating in a complex multi-centre person-centred intervention process that aimed to support patients diagnosed with colorectal cancer to feel prepared for surgery, discharge and recovery. Method: Data consisted of retrospective interviews with 20 professionals after the intervention, supplemented with prospective conversational data and field notes from workshops and follow-up meetings (n = 51). The data were analysed to construct patterns in line with interpretive description. Results: Although the participants highly valued components of the intervention, the results reveal influencing mechanisms underlying the functioning of the intervention, including multiple objectives, unclear mandates and competing professional logics. The results also reveal variations in processing the intervention focused on differences in using and talking about intervention components. Conclusions: The study indicates there are significant areas of ambiguity in understanding how theory-based complex clinical interventions work and in how interventions are socially constructed and co-created by professionals' experiences, assumptions about own professional practice, contextual conditions and the researchers' intentions. This process evaluation reveals insights into reasons for success or failure and contextual aspects associated with variations in outcomes. Thus, there is a need for further interpretive inquiry, and not only descriptive studies, of the multifaceted characters of complex clinical interventions and how the intervention components are actually shaped in constantly shifting contexts.
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| 4. |
- Henoch, Ingela, 1956, et al.
(författare)
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Palliative Care Research : A Systematic Review of foci, designs and methods of research conducted in Sweden between 2007 and 2012
- 2016
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley-Blackwell. - 0283-9318 .- 1471-6712. ; 30:1, s. 5-25
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Forskningsöversikt (refereegranskat)abstract
- Background: In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci.Methods: A literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria 'palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'.Results: A total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children <18 years of age.Conclusions: The trend is that Swedish palliative care research has expanded in volume from 2007 to 2012 compared to during the 1970s to 2006, with increasing participation of non-cancer-specific populations. A domination of qualitative approaches and small, cross-sectional studies with few interventions is still characteristic. Still more strategies are needed to expand the knowledge development of palliative care to respond to demographical, epidemiological, therapeutic and healthcare structure changes.
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| 5. |
- Holm, Maja, et al.
(författare)
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Psychometric evaluation of the anticipatory grief scale in a sample of family caregivers in the context of palliative care.
- 2019
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 17:1
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Tidskriftsartikel (refereegranskat)abstract
- In palliative care, family caregivers are often faced with experiences of grief in anticipation of the loss of a close person. An instrument designed to measure this form of grief is the Anticipatory Grief Scale, which includes 27 items and has been used in several studies in various contexts. However, the instrument has not been validated.The aim was to evaluate the psychometric properties, focusing on the factor structure, of the Anticipatory Grief Scale in a sample of family caregivers in palliative care.The study had a cross-sectional design. Data were collected from an intervention study in palliative home care that took place between 2013 and 2014. In total, 270 family caregivers in palliative care completed a baseline questionnaire, including the Anticipatory Grief Scale. The factor structure of the scale was evaluated using exploratory factor analysis.The initial factor analysis suggested a four-factor solution, but, due to weak communalities, extensive crossloadings, and item inconsistencies, the model was problematic. Further analysis supported that the scale should be reduced to 13 items and two factors. The two subscales captured the behavioral and emotional reactions of grief in family caregivers in palliative care and were named Behavioral reactions and Emotional reactions. This modified version will hereafter be named AGS-13.This validation study of the Anticipatory Grief Scale resulted in a revised two-factor model, AGS-13, that appears to be promising for use in palliative care but needs to be tested further.
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| 6. |
- Holm, Maja, et al.
(författare)
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Psychometric evaluation of the Texas revised inventory of grief in a sample of bereaved family caregivers
- 2018
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Ingår i: Research in Nursing & Health. - : Wiley. - 0160-6891 .- 1098-240X. ; 41:5, s. 480-488
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Tidskriftsartikel (refereegranskat)abstract
- The Texas Revised Inventory of Grief (TRIG) was developed to measure the intensity of grief after the death of a close person. It consists of two scales: TRIG I (past behaviors) and TRIG II (present feelings). Because of inconsistencies in previous validations, the instrument needs to be further validated, hence the aim of this study was to evaluate the psychometric properties of the TRIG in a sample of bereaved family caregivers in Sweden. The TRIG was translated to Swedish according to standard principles, and 129 bereaved family caregivers completed the questionnaire. Parallel analysis was used to decide the number of factors to extract, followed by confirmatory factor analysis. An ordinal version of Cronbach's alpha was used to evaluate the internal consistency of the scales. Construct validity was tested against the Hospital Anxiety and Depression Scale (HADS). The factor analyses resulted in one factor being retained for both scales. The internal consistency was excellent (>0.9) for both scales. Construct validity was supported by strong correlations between TRIG I and TRIG II as well as moderate correlations between the TRIG scales and HADS. In conclusion, the TRIG has sound psychometric qualities and the two scales should be treated as unidimensional measures of grief. Hence, the instrument is suited to be used in the context of palliative care.
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| 7. |
- Holm, Maja, et al.
(författare)
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Recruiting participants to a randomized controlled trial testing an intervention in palliative cancer care - The perspectives of health care professionals
- 2017
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Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 31, s. 6-11
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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.
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| 8. |
- Holm, Maja, et al.
(författare)
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Variations in grief, anxiety, depression, and health among family caregivers before and after the death of a close person in the context of palliative home care
- 2020
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Ingår i: Death Studies. - : Informa UK Limited. - 0748-1187 .- 1091-7683. ; 44:9, s. 531-9
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Tidskriftsartikel (refereegranskat)abstract
- This article investigates longitudinal variations in grief, self-rated health, and symptoms of anxiety and depression among family caregivers in palliative care. Data were taken from a randomized psycho-educational intervention trial and were collected at four time-points; at baseline, upon completion, 2 months later, and 6 months after the patient's death. In total, 117 family caregivers completed all questionnaires. The participants' grief was stable across the measurements, while anxiety, depression, and health varied significantly (p < 0.05). No significant differences were found between the intervention or control group. In conclusion, grief emerged as a constant phenomenon, distinct from symptoms of anxiety and depression.
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| 9. |
- Kenne Sarenmalm, Elisabeth, 1956, et al.
(författare)
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Swedish Version of the Distress Thermometer: Validity Evidence in Patients With Colorectal Cancer.
- 2018
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Ingår i: Journal of the National Comprehensive Cancer Network : JNCCN. - : Harborside Press, LLC. - 1540-1413 .- 1540-1405. ; 16:8, s. 959-966
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Tidskriftsartikel (refereegranskat)abstract
- Background: The objective of this study was to validate the NCCN Distress Thermometer (DT), including the accompanying Problem List (PL), in a Swedish population of patients diagnosed with colorectal cancer (CRC). Methods: A total of 488 patients diagnosed with CRC completed the DT/PL and EORTC core quality-of-life questionnaire (QLQ-C30) before surgery. Construct validity of the PL was analyzed using a confirmatory factor analysis. Internal consistency reliability (ICR) was tested using Cronbach's alpha coefficient. Correlations between the reported PL areas and QLQ-C30 function scales were used to explore convergent validity. Discriminant validity was examined by evaluating associations between the DT and QLQ-C30 measures of overall health-related quality of life (HRQoL). Results: Findings showed that the Swedish translation of the DT/PL is consistent with the original English version. The DT has good ICR, with the total number of reported problems significantly correlating with DT scores (r=0.67; P<.001). Analysis of convergent validity indicated that the PL areas significantly correlated with QLQ-C30 function scales, with emotional problems showing the highest correlation (r=0.76; P<.001), and item-level correlation analyses showed significant correlations between symptoms. There was also good discriminant validity between the DT and the QLQ-C30 in terms of HRQoL, including overall health status (r=-0.49; P<.001) and overall quality of life (r=-0.57; P<.001). Furthermore, there was good discriminant validity between the DT and QLQ-C30 regarding poor, moderate, and excellent HRQoL. Conclusions: These findings provide validity evidence regarding the DT, including the PL. Findings also show that the DT has good potential for screening distress-related practical, family, emotional, and physical problems during the cancer trajectory in Swedish-speaking patients. Additionally, the DT seems to be an effective screening tool to detect patients with poor, moderate, and excellent HRQoL.
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| 10. |
- Larsdotter, Cecilia, 1968-, et al.
(författare)
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Trends in the place of death in Sweden from 2013 to 2019-disclosing prerequisites for palliative care
- 2024
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Ingår i: PALLIATIVE CARE & SOCIAL PRACTICE. - 2632-3524. ; 18
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Tidskriftsartikel (refereegranskat)abstract
- Background: The drive for home care has increasingly impacted the organization and allocation of resources within the Swedish healthcare system. Objectives: With an interest in uncovering prerequisites for palliative care, this study aimed to investigate longitudinal trends in place of death within the adult Swedish population from 2013 to 2019 and examine potential associations between place of death and individual, geographic, and socioeconomic factors; hospital capacity; and healthcare utilization. Methods: This population-level comprehensive register study included all deceased individuals >= 18 years old with a registered place of death (n = 599,137). Data were retrieved from public and patient data registers and the national register for palliative care. Trends and associations between place of death and co-variables were investigated by logistic regression- and interaction analyses. Results: From 2013 to 2019, the total number of home deaths increased by 1.9%, whereas the number of hospital deaths decreased by 2.6%. In the overall population of individuals living in their own homes, from 2013 to 2019, the likelihood of dying in hospital versus dying at home decreased (odds ratio: 0.98, 95% confidence interval: 0.97-0.99). Within the population with potential palliative needs living in their own home (78.4%), the likelihood of dying in hospitals equally decreased, except in Stockholm and the north region. For individuals residing in a nursing home, however, the likelihood of dying in hospital versus remaining in the nursing home until death only significantly decreased in the southern region. Conclusion: The results show a trend towards a decrease in hospital deaths but with cross-regional variations. Still, in 2019, only about one-fifth of all individuals died in their own homes. Public health-oriented interventions aimed at strengthening palliative care resources in nursing homes and home care are suggested.
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