| 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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Communicating bodily changes : Physicians' ways of enabling patient understanding in gastrointestinal cancer consultations
- 2015
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Ingår i: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 13:03, s. 661-671
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To explore how physicians communicatively enable patients' understanding of bodily changes in gastrointestinal cancer care consultations.Method: Two datasets were used. The first consisted of transcribed video-recorded palliative care consultations with three oncologists and six patients diagnosed with advanced gastrointestinal cancer, in the context of outpatient palliative care. The second dataset was audio-recorded transcriptions from diagnostic consultations with six surgeons and seven patients diagnosed with colorectal cancer, in the context of cancer surgery. An inductively driven and iterative analysis of interaction was performed, guided by Wetherell et al. (2001).Results: Two overarching communicative strategies were identified: (1) “visualizing strategies,” with the dimensions: visible strategies (visualizing with what you actually or potentially can see), sensory strategies (visualizing with what is possible to feel), and imaginative strategies; and (2) “contrasting strategies,” with the dimensions: contrasting subjective experiences and contrasting between the patient and other people.Significance of results: The visualizing and contrasting communicative strategies form parts of physicians' tacit and experience-based knowledge. The strategies employed by physicians reveal clear potentials to enable patients' understanding and sense making of bodily changes. However, these strategies need to be explicated and problematized as parts of both consultation practice and basic medical education. By means of increased awareness, physicians can more easily identify turning points in patients' levels of understanding, thereby enriching ordinary medical consultations with reflected pedagogical strategies and skills in how to dialogue in a person-centered manner.
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| 4. |
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| 5. |
- Harding, Richard, et al.
(författare)
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Place of death for people with HIV : a population-level comparison of eleven countries across three continents using death certificate data
- 2018
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Ingår i: BMC Infectious Diseases. - : Springer Science and Business Media LLC. - 1471-2334. ; 18:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: With over 1 million HIV-related deaths annually, quality end-of-life care remains a priority. Given strong public preference for home death, place of death is an important consideration for quality care. This 11 country study aimed to i) describe the number, proportion of all deaths, and demographics of HIV-related deaths; ii) identify place of death; iii) compare place of death to cancer patients iv), determine patient/health system factors associated with place of HIV-related death.METHODS: In this retrospective analysis of death certification, data were extracted for the full population (ICD-10 codes B20-B24) for 1-year period: deceased's demographic characteristics, place of death, healthcare supply.RESULTS: i) 19,739 deaths were attributed to HIV. The highest proportion (per 1000 deaths) was for Mexico (9.8‰), and the lowest Sweden (0.2‰). The majority of deaths were among men (75%), and those aged <50 (69.1%). ii) Hospital was most common place of death in all countries: from 56.6% in the Netherlands to 90.9% in South Korea. The least common places were hospice facility (3.3%-5.7%), nursing home (0%-17.6%) and home (5.9%-26.3%).iii) Age-standardised relative risks found those with HIV less likely to die at home and more likely to die in hospital compared with cancer patients, and in most countries more likely to die in a nursing home. iv) Multivariate analysis found that men were more likely to die at home in UK, Canada, USA and Mexico; a greater number of hospital beds reduced the likelihood of dying at home in Italy and Mexico; a higher number of GPs was associated with home death in Italy and Mexico.CONCLUSIONS: With increasing comorbidity among people ageing with HIV, it is essential that end-of-life preferences are established and met. Differences in place of death according to country and diagnosis demonstrate the importance of ensuring a "good death" for people with HIV, alongside efforts to optimise treatment.
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| 6. |
- Hellström, Ingrid, et al.
(författare)
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Development of older men's caregiving roles for wives with dementia.
- 2017
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 31:4, s. 957-964
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Tidskriftsartikel (refereegranskat)abstract
- This secondary analysis of qualitative interviews describes how older Swedish men approach the caregiver role for a wife with dementia, over time. An increasing number of male caregivers will become primary caregivers for partners living with dementia at home, and they will likely be caregivers for an extended period of time. It has been stated that caregiving experiences influence how older men think of themselves. The theoretical starting point is a constructivist position, offering an understanding of older caregiving men's constructions and reconstructions of themselves and their caregiver roles. Seven men, who were cohabiting with their wives, were interviewed on up to five occasions at home during a 5- to 6-year period. The findings comprise three themes; me and it, me despite it, it is me, depict how these men gradually take on and normalise the caregiving tasks, and how they develop and internalise a language based on their caring activities. The results provide understanding about the relationship between men as caregivers and how this influences them as individuals. By careful attention to each caregiving man's individual needs rather than making gendered assumptions about men and caring, the aim of the caregiver support for men might best target men's own meaning to the caring in their the everyday practices.
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| 7. |
- Håkanson, Cecilia, 1968-, et al.
(författare)
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A population-level study of place of death and associated factors in Sweden
- 2015
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Ingår i: Scandinavian Journal of Public Health. - : SAGE Publications. - 1403-4948 .- 1651-1905. ; 43:7, s. 744-751
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Tidskriftsartikel (refereegranskat)abstract
- Aims: The aims of this study were to examine, on a population level, where people die in Sweden, and to investigate associations between place of death and underlying cause of death, socioeconomic and environmental characteristics, with a particular interest in people dying from life-limiting conditions typically in need of palliative care. Methods: This population-level study is based on death certificate data for all deceased individuals in Sweden in 2012, with a registered place of death (n=83,712). Multivariable logistic regression was performed to investigate associations between place of death and individual, socioeconomic and environmental characteristics. Results: The results show that, in 2012, 42.1% of all deaths occurred in hospitals, 17.8% occurred at home and 38.1% in nursing home facilities. Individuals dying of conditions indicative of potential palliative care needs were less likely to die in hospital than those dying of other conditions (OR = 0.73; 95% CI = 0.70-0.77). Living at home in urban areas was associated with higher likelihood of dying in hospital or in a nursing home (OR = 1.04 and 1.09 respectively). Educational attainment and marital status were found to be somewhat associated with the place of death. Conclusions: The majority of deaths in Sweden occur in institutional settings, with comparatively larger proportions of nursing home deaths than most countries. Associations between place of death and other variables point to inequalities in availability and/or utilization of health services at the end of life.
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| 8. |
- Håkanson, Cecilia, et al.
(författare)
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Being in the Patient Position : Experiences of Health Care Among People With Irritable Bowel Syndrome
- 2010
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Ingår i: Qualitative Health Research. - Thousand Oaks, USA : Sage Publications. - 1049-7323 .- 1552-7557. ; 20:8, s. 1116-1127
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Tidskriftsartikel (refereegranskat)abstract
- The purpose of this study was to gain in-depth understanding of what it is like for a person with irritable bowel syndrome to be in the patient position in encounters with health care providers. We conducted qualitative interviews with nine individuals. Our analysis, guided by interpretive description, revealed experiences of unsupportive and supportive encounters. Unsupportive encounters were shaped by humiliation, insignificance, and abandonment. Not feeling believed and acknowledged as persons made the participants lose trust in their own experience, which enhanced their unfamiliar mood of being in the world. Supportive encounters were less prominent. These were characterized by openness and acknowledgment of the patient’s lifeworld. Feeling significant and being listened to promoted feelings of being in a partnered, cocreating relationship. It is reasonable to assume that care originating in the patient’s lifeworld would support the patients to use their strength to manage illness and regain familiarity in everyday life.
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| 9. |
- Håkanson, Cecilia, 1968-, et al.
(författare)
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Connectedness at the End of Life Among People Admitted to Inpatient Palliative Care.
- 2016
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Ingår i: The American journal of hospice & palliative care. - : SAGE Publications. - 1938-2715 .- 1049-9091. ; 33:1, s. 47-54
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Tidskriftsartikel (refereegranskat)abstract
- The significance of connectedness for well-being is well known. At the end of life however, illness and body decline may challenge a person's ability of staying and feeling connected. The aim of this phenomenological study was to interpret meanings of connectedness, through narrative interviews with persons admitted to inpatient palliative care in Sweden. Results involving connectedness through the body, connectedness to, and uncanniness toward other patients, and connectedness to significant others and society are discussed. The study underscores the importance of connectedness until death. However, in inpatient palliative care this is complex. Patients can cocreate or challenge each other's sense of connectedness through the symbolism of illness and diseased bodies. Moreover, the capability of connectedness is influenced by illness, spatiality, atmosphere, activities, and resources in the care place.
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| 10. |
- Håkanson, Cecilia, 1968-
(författare)
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Everyday life, health care and self care management among people with irritable bowel syndrome : An integrative review of qualitative research
- 2013
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Ingår i: Gastroenterology Nursing. - : Wolters Kluwer. - 1042-895X .- 1538-9766. ; 37:3, s. 217-225
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Forskningsöversikt (refereegranskat)abstract
- Irritable bowel syndrome is a commonly recognized chronic disease in all healthcare settings. This integrative review investigated current knowledge about adults' illness-related experiences of this disease from the perspectives of everyday life, healthcare, and self-care management. The overarching findings related to everyday life with irritable bowel syndrome were life-limiting experiences of the body-self as unfamiliar and of the body and symptoms as shameful and unpredictable. The limitations manifested as lack of ability to move about freely, fulfill ambitions or commitments at work, maintain social activities, uphold or develop close and/or sexual relationships and parenting, and live a life with spontaneity. Physical condition, knowledge about disease/illness-related matters, and one's own perceived ability to find adequate strategies were significant for the ability of self-care management. Healthcare was experienced as being unsupportive and not providing information and guidance for enabling self-care management. These results suggest a need for controlled intervention trials of healthcare models that take as their point of departure the individual's experience of illness, needs, and life situation, and that enable learning and sharing of illness experiences, combined with the provision of scientific knowledge and advice from healthcare professionals.
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