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Providing Palliative Care in a Swedish Support Home for People Who Are Homeless.

https://arctichealth.org/en/permalink/ahliterature290915
Source
Qual Health Res. 2016 Jul; 26(9):1252-62
Publication Type
Journal Article
Date
Jul-2016
Author
Cecilia Håkanson
Jonas Sandberg
Mirjam Ekstedt
Elisabeth Kenne Sarenmalm
Mats Christiansen
Joakim Öhlén
Author Affiliation
Ersta Sköndal University College, Stockholm, Sweden cecilia.hakanson@esh.se.
Source
Qual Health Res. 2016 Jul; 26(9):1252-62
Date
Jul-2016
Language
English
Publication Type
Journal Article
Keywords
Communication
Homeless Persons
Humans
Palliative Care
Qualitative Research
Sweden
Abstract
Despite high frequencies of multiple, life-limiting conditions relating to palliative care needs, people who are homeless are one of the most underserved and rarely encountered groups in palliative care settings. Instead, they often die in care places where palliative competence is not available. In this qualitative single-case study, we explored the conditions and practices of palliative care from the perspective of staff at a Swedish support home for homeless people. Interpretive description guided the research process, and data were generated from repeated reflective conversations with staff in groups, individually, and in pairs. The findings disclose a person-centered approach to palliative care, grounded in the understanding of the person's health/illness and health literacy, and how this is related to and determinant on life as a homeless individual. Four patterns shape this approach: building trustful and family-like relationships, re-dignifying the person, re-considering communication about illness and dying, and re-defining flexible and pragmatic care solutions.
PubMed ID
25994318 View in PubMed
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Meanings and experiential outcomes of bodily care in a specialist palliative context.

https://arctichealth.org/en/permalink/ahliterature269479
Source
Palliat Support Care. 2015 Jun;13(3):625-33
Publication Type
Article
Date
Jun-2015
Author
Cecilia Håkanson
Joakim Öhlén
Source
Palliat Support Care. 2015 Jun;13(3):625-33
Date
Jun-2015
Language
English
Publication Type
Article
Keywords
Female
Humans
Inpatients - psychology
Male
Neoplasms - therapy
Nursing Care - psychology
Outcome Assessment (Health Care)
Palliative Care - psychology
Specialization
Sweden
Abstract
The objective of this study was to enhance the depth of existing knowledge about meanings and experiential outcomes of bodily care in the context of an inpatient specialist palliative setting.
Interpretative phenomenology was chosen as the study sought to explore individuals' lived experiences related to bodily care. Nine participants (five women, four men) of various ages and with various metastasized cancers and bodily-care needs, all from one specialist palliative care ward, participated. Data were collected with repeated narrative interviews and supplementary participating observations. Analysis was informed by van Manen's approach.
The following meanings and experiential outcomes of bodily care were revealed by our study: maintaining and losing body capability, breaching borders of bodily integrity, being comforted and relieved in bodily-care situations, and being left in distress with unmet needs. These meanings overlap and shape the nature of each other and involve comforting and distressing experiences related to what can be described as conditional dimensions: the particular situation, one's own experiences of the body, and healthcare professionals' approaches.
The results, based on specialist palliative care patients' experiences, outline the meanings and outcomes that relate to the quintessence and complexity of palliative care, deriving from dying persons' blend of both basic and symptom-oriented bodily-care needs. Moreover, the results outline how these two dimensions of care equally influence whether comfort and well-being are facilitated or not. Considering this, specialist palliative care may consider how to best integrate and acknowledge the value of skilled basic nursing care as part of and complementary to expertise in symptom relief during the trajectories of illness and dying.
PubMed ID
24762673 View in PubMed
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Palliative Care Research--A Systematic Review of foci, designs and methods of research conducted in Sweden between 2007 and 2012.

https://arctichealth.org/en/permalink/ahliterature280717
Source
Scand J Caring Sci. 2016 Mar;30(1):5-25
Publication Type
Article
Date
Mar-2016
Author
Ingela Henoch
Ida Carlander
Maja Holm
Inger James
Elisabeth Kenne Sarenmalm
Carina Lundh Hagelin
Susanne Lind
Anna Sandgren
Joakim Öhlén
Source
Scand J Caring Sci. 2016 Mar;30(1):5-25
Date
Mar-2016
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Aged
Aged, 80 and over
Child
Female
History, 21st Century
Humans
Male
Middle Aged
Palliative Care
Research Design
Sweden
Young Adult
Abstract
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.
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'.
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
PubMed ID
26190052 View in PubMed
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Connectedness at the End of Life Among People Admitted to Inpatient Palliative Care.

https://arctichealth.org/en/permalink/ahliterature280737
Source
Am J Hosp Palliat Care. 2016 Feb;33(1):47-54
Publication Type
Article
Date
Feb-2016
Author
Cecilia Håkanson
Joakim Öhlén
Source
Am J Hosp Palliat Care. 2016 Feb;33(1):47-54
Date
Feb-2016
Language
English
Publication Type
Article
Keywords
Adaptation, Psychological
Attitude to Death
Female
Humans
Interpersonal Relations
Male
Palliative Care - methods - psychology
Quality of Life - psychology
Self Concept
Social Support
Sweden
Terminally Ill - psychology
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 co-create 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.
PubMed ID
25305250 View in PubMed
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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.

https://arctichealth.org/en/permalink/ahliterature301199
Source
J Pain Symptom Manage. 2018 02; 55(2):236-244
Publication Type
Journal Article
Date
02-2018
Author
Lena Axelsson
Anette Alvariza
Jenny Lindberg
Joakim Öhlén
Cecilia Håkanson
Helene Reimertz
Carl-Johan Fürst
Kristofer Årestedt
Author Affiliation
Center for Collaborative Palliative Care, Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden; Sophiahemmet University, Stockholm, Sweden. Electronic address: lena.axelsson@shh.se.
Source
J Pain Symptom Manage. 2018 02; 55(2):236-244
Date
02-2018
Language
English
Publication Type
Journal Article
Keywords
Adolescent
Adult
Aged
Aged, 80 and over
Bereavement
Communication
Disease Management
Female
Humans
Kidney Failure, Chronic - epidemiology - therapy
Male
Middle Aged
Pain - epidemiology
Palliative Care
Prevalence
Registries
Renal Dialysis
Sweden
Terminal Care
Young Adult
Abstract
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.
To describe symptom prevalence, relief, and management during the last week of life, as well as end-of-life communication, in patients with ESKD.
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.
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.
Even if death is expected, most patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support.
PubMed ID
28941964 View in PubMed
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A population-level study of place of death and associated factors in Sweden.

https://arctichealth.org/en/permalink/ahliterature270434
Source
Scand J Public Health. 2015 Nov;43(7):744-51
Publication Type
Article
Date
Nov-2015
Author
Cecilia Håkanson
Joakim Öhlén
Lucas Morin
Joachim Cohen
Source
Scand J Public Health. 2015 Nov;43(7):744-51
Date
Nov-2015
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Aged
Aged, 80 and over
Child
Child, Preschool
Death
Death Certificates
Female
Healthcare Disparities
Home Care Services - statistics & numerical data
Hospital Mortality
Humans
Infant
Infant, Newborn
Male
Middle Aged
Nursing Homes - statistics & numerical data
Palliative Care - utilization
Socioeconomic Factors
Sweden - epidemiology
Terminally Ill - statistics & numerical data
Young Adult
Abstract
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.
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.
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.
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.
PubMed ID
26194351 View in PubMed
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Determinants in the place of death for people with different cancer types: a national population-based study.

https://arctichealth.org/en/permalink/ahliterature281692
Source
Acta Oncol. 2017 Mar;56(3):455-461
Publication Type
Article
Date
Mar-2017
Author
Joakim Öhlén
Joachim Cohen
Cecilia Håkanson
Source
Acta Oncol. 2017 Mar;56(3):455-461
Date
Mar-2017
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Aged
Aged, 80 and over
Female
Hospital Mortality
Hospitals - statistics & numerical data
Humans
Male
Middle Aged
Neoplasms - classification - mortality - pathology
Nursing Homes - statistics & numerical data
Palliative Care - organization & administration - standards - statistics & numerical data
Registries
Residence Characteristics - statistics & numerical data
Socioeconomic Factors
Sweden - epidemiology
Terminal Care - organization & administration - standards - statistics & numerical data
Young Adult
Abstract
Place of death has for the past decade increasingly come to be regarded as a robust indicator of how palliative care is organized and provided, and is also recognized as an important factor for well being at the end of life. Variations in place of cancer deaths have previously been reported in the context of country-specific healthcare organization, but without differentiating between cancer types and national regional variations. Our aim was to examine, at a population level, where people with cancer diseases die in Sweden, and to investigate associations of place of death and cancer type with individual, socioeconomic and geographical characteristics of the deceased.
This population level study is based on death certificate data (sex; age; underlying cause of death and place of death) and population register data (educational attainment, marital status, living arrangements, area of residence, degree of urbanization, and healthcare region) of all 2012 cancer deaths in Sweden, with a registered place of death (hospital, nursing home, home, other places). Data were explored descriptively. To investigate associations between place of death and cancer types, and individual, socioeconomic and environmental characteristics, a series of multivariable logistic regression analyses were performed.
The most frequent type of cancer death occurring at home was upper gastrointestinal cancer (25.6%) and the least frequent was hematological cancer (15.2%). Regional variations in cancer deaths occurring at home ranged from 17.1% to 28.4%. Factors associated with place of death by cancer type were age, educational attainment, marital status, healthcare regions and degree of urbanization.
Large healthcare regional variations in place of death among different cancer types were found. The socioeconomic inequality previously demonstrated for screening, diagnostic and treatment processes, rehabilitation and survival thus also seems to be reflected in the place of death.
PubMed ID
27835053 View in PubMed
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Palliative care during the final week of life of older people in nursing homes: A register-based study.

https://arctichealth.org/en/permalink/ahliterature291647
Source
Palliat Support Care. 2017 Aug; 15(4):417-424
Publication Type
Journal Article
Date
Aug-2017
Author
Jonas Smedbäck
Joakim Öhlén
Kristofer Årestedt
Anette Alvariza
Carl-Johan Fürst
Cecilia Håkanson
Author Affiliation
Department of Health Care Sciences,Ersta Sköndal University College,Stockholm,Sweden.
Source
Palliat Support Care. 2017 Aug; 15(4):417-424
Date
Aug-2017
Language
English
Publication Type
Journal Article
Keywords
Aged
Aged, 80 and over
Confusion - complications
Dyspnea - complications
Female
Humans
Male
Middle Aged
Nausea - complications
Nursing Homes - organization & administration - standards - statistics & numerical data
Pain - complications
Palliative Care - methods - standards - statistics & numerical data
Prevalence
Quality of Health Care - standards
Quality of Life - psychology
Registries - statistics & numerical data
Sweden
Syndrome
Terminal Care - methods - standards - statistics & numerical data
Time Factors
Abstract
Our aim was to explore the presence of symptoms, symptom relief, and other key aspects of palliative care during the final week of life among older people residing in nursing homes.
Our study employed data from the Swedish Palliative Care Register on all registered individuals aged 60 and older who had died in nursing homes during the years 2011 and 2012. Variables pertaining to monitoring and treatment of symptoms, end-of-life discussions, circumstances around the death, and the individual characteristics of deceased individuals were explored using descriptive statistics.
The most common underlying causes of death among the 49,172 deceased nursing home residents were circulatory diseases (42.2%) and dementia (22.7%). The most prevalent symptom was pain (58.7%), followed by rattles (42.4%), anxiety (33.0%), confusion (21.8%), shortness of breath (14.0%), and nausea (11.1%). Pain was the symptom with the highest degree of total relief (46.3%), whereas shortness of breath and confusion were totally relieved in 6.1 and 4.3% of all individuals, respectively. The use of valid instruments for symptom assessment was reported for pain in 12.3% and for other symptoms in 7.8% of subjects. The most prevalent individual prescriptions for injection PRN (pro re nata, according to circumstances) were for pain treatment (79.5%) and rattles (72.8%). End-of-life discussions were performed with 27.3% of all the deceased individuals and with 53.9% of their relatives. Of all individuals, 82.1% had someone present at death, and 15.8% died alone. Of all the nursing home resident deaths recorded, 45.3% died in their preferred place.
There were large variations in degree of relief from different symptoms during the final week of life. Pain was the most prevalent symptom, and it was also the symptom with the highest proportion of total/partial relief. Other symptoms were less prevalent but also less well-relieved. Our results indicate a need for improvement of palliative care in nursing home settings, focusing on management of distressing symptoms and promotion of end-of-life discussions.
PubMed ID
28049547 View in PubMed
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8 records – page 1 of 1.