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  • 1.
    Andershed, Birgitta
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Ternestedt, Britt-MarieErsta Sköndal University College, Palliative Research Centre, PRC.Håkanson, CeciliaErsta Sköndal University College, Palliative Research Centre, PRC.
    Palliativ vård: begrepp & perspektiv i teori och praktik2013Collection (editor) (Other academic)
  • 2.
    Axelsson, Lena
    et al.
    Linnéuniversitetet, Sophiahemmet högskola.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Lindberg, Jenny
    Lunds universitet, Skånes universitetssjukhus.
    Öhlén, Joakim
    Göteborgs universitet.
    Håkanson, Cecilia
    Sophiahemmet högskola.
    Reimertz, Helene
    Region Kronoberg.
    Fürst, Carl-Johan
    Lunds universitet, Region Skåne.
    Årestedt, Kristofer
    Linnéuniversitetet, Länssjukhuset i Kalmar.
    Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease: A National Registry Study About the Last Week of Life.2018In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 55, no 2, p. 236-244, article id S0885-3924(17)30494-3Article in journal (Refereed)
    Abstract [en]

    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.

  • 3.
    Friberg, Febe
    et al.
    University of Stavanger, Göteborgs universitet.
    Lidén, Eva
    Göteborgs universitet.
    Håkanson, Cecilia
    Ersta Sköndal University College, Palliative Research Centre, PRC. Ersta sjukhus, Karolinska institutet.
    Öhlén, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC. Ersta sjukhus, Göteborgs universitet.
    Communicating bodily changes: Physicians' ways of enabling patient understanding in gastrointestinal cancer consultations2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 03, p. 661-671Article in journal (Refereed)
    Abstract [en]

    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.

  • 4.
    Harding, Richard
    et al.
    Storbritannien.
    Marchetti, Stefano
    Italien.
    Onwuteaka-Philipsen, Bregje D
    Nederländerna.
    Wilson, Donna M
    Kanada.
    Ruiz-Ramos, Miguel
    Spanien.
    Cardenas-Turanzas, Maria
    USA.
    Rhee, YongJoo
    Sydkorea.
    Morin, Lucas
    Karolinska institutet.
    Hunt, Katherine
    Storbritannien.
    Teno, Joan
    USA.
    Håkanson, Cecilia
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Houttekier, Dirk
    Belgien.
    Deliens, Luc
    Belgien.
    Cohen, Joachim
    Belgien.
    Place of death for people with HIV: a population-level comparison of eleven countries across three continents using death certificate data.2018In: BMC Infectious Diseases, ISSN 1471-2334, E-ISSN 1471-2334, Vol. 18, no 1, article id 55Article in journal (Refereed)
    Abstract [en]

    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.

  • 5.
    Hellström, Ingrid
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linköpings universitet.
    Håkanson, Cecilia
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Eriksson, Henrik
    Röda korsets högskola.
    Sandberg, Jonas
    Jönköpings universitet.
    Development of older men's caregiving roles for wives with dementia.2017In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 31, no 4, p. 957-964Article in journal (Refereed)
    Abstract [en]

    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.

  • 6.
    Håkanson, Cecilia
    Ersta Sköndal University College, Palliative Reserch Centre, PRC. Karolinska Institutet, NVS.
    Everyday life, health care and self care management among people with irritable bowel syndrome: An integrative review of qualitative research2013In: Gastroenterology Nursing, ISSN 1042-895X, E-ISSN 1538-9766, Vol. 37, no 3, p. 217-225Article in journal (Refereed)
    Abstract [en]

    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.

  • 7.
    Håkanson, Cecilia
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Kroppslighet och kroppslig omvårdnad2014In: Omvårdnadens grunder: perspektiv och förhållningssätt / [ed] Febe Friberg, Joakim Öhlén, Lund: Studentlitteratur AB, 2014, 2, p. 213-236Chapter in book (Other academic)
  • 8.
    Håkanson, Cecilia
    Ersta Sköndal University College, Enheten för forskning i palliativ vård. Ersta Sköndal University College, Department of Health Care Sciences.
    Learning to live with irritable bowel syndrome: Experiences of a group-based patient education program2010Article in journal (Refereed)
  • 9.
    Håkanson, Cecilia
    Ersta Sköndal University College, Enheten för forskning i palliativ vård. Ersta Sköndal University College, Department of Health Care Sciences.
    Living with irritable bowel syndrome: A patient perspective on everyday life, health care encounters and patient education2010Doctoral thesis, comprehensive summary (Other academic)
  • 10.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Sahlberg-Blom, Eva
    Örebro universitet.
    Nyhlin, Henry
    Karolinska universitetssjukhuset Huddinge.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Learning to live with irritable bowel syndrome.: The influence of a group-based patient education programme on peoples’ ability to manage illness in everyday life.2011In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 25, no 3, p. 491-498Article in journal (Refereed)
    Abstract [en]

    Background: Living with chronic irritable bowel syndrome sets limitations in peoples’ everyday lives. This is due to bad health and the difficulty to find strategies that will manage their problem. In encounters with health care providers, these people feel that they are not getting the appropriate support to manage their illness-related troubles, and they perceive themselves to be insufficiently informed about the disease.

    Aim: To evaluate the influence of a group-based patient education programme about irritable bowel syndrome, on people’s ability to manage their illness in everyday life.

    Methods: The study used an evaluative research design. Fifty-one individuals with irritable bowel syndrome completed the ways of coping questionnaire, and the irritable bowel syndrome severity scoring system, before and after participating in a multidisciplinary group-based patient education programme.

    Results: In the participants’ self assessments, statistical significances (p > 0.05) were found for the mean frequency of efforts used on the coping strategies distancing and escape-avoidance. Distancing was used more often after the education programme, while escape-avoidance, was used more seldom. The proportional use of the strategy self-controlling (relative score) was enhanced after the education programme. The participants’ overall severity of symptoms was significantly reduced after the education programme. The individuals with a clinically noteworthy improvement in symptom severity (decrease £ 50) had greater changes in relative score values than those that showed a lesser improvement in symptom severity.

    Conclusion: Coping patterns were changed and symptoms were scored significantly less severe among the participants who participated in the education programme. Controlled studies following individuals over a longer period are suggested to establish the validity and sustainability of these changes, and qualitative interview studies would provide additional understanding about the significance of the separate parts of the education programme, and about the meaning of the programme to peoples’ everyday lives as a whole.

  • 11.
    Håkanson, Cecilia
    et al.
    Örebro universitet & Ersta sjukhus.
    Sahlberg-Blom, Eva
    Ersta Sköndal University College, Department of palliative care research. Örebro universitet.
    Nyhlin, Henry
    Ersta sjukhus.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård. Örebro universitet.
    Struggling with an unfamiliar and unreliable body: the experience of irritable bowel syndrome2009In: Journal of Nursing and Healthcare of Chronic Illness, ISSN 1752-9816, Vol. 1, no 1, p. 29-38Article in journal (Refereed)
    Abstract [en]

    Aim: To describe the phenomenon living with irritable bowel syndrome from a life-world perspective.

    Background: Ten to twenty per cent of the adult population in the world is known to live with irritable bowel syndrome. The life-world experience of people with irritable bowel syndrome has been paid little attention. A deeper understanding about the phenomenon living with irritable bowel syndrome is of interest for the future development of care.

    Design and methods: The study was performed using a phenomenological method. Data was collected by in-depth, open interviews performed in 2006, with nine persons between 25–55 years, diagnosed with irritable bowel syndrome. The interviews were analysed according to the method of Giorgi.

    Results: Six interrelated key constituents have been identified: Having an altered self-image, feeling ashamed, distrusting the body, feeling tired, blaming oneself, and finding solutions. A structure has been formulated, describing that living with irritable bowel syndrome means struggling with an unfamiliar and unreliable body. Tiredness, distrust, and feelings of shame towards the body bring about limitations in everyday life. At the same time, living with irritable bowel syndrome means having a strong will to exceed the limitations and become familiar with one self.

    Conclusion: This study suggests that living with irritable bowel syndrome means to struggle with an unfamiliar and unreliable body that brings about changes of self-image and limitations in every day life. Feelings of distrust, shame and embarrassment towards troublesome symptoms, are important contributions to the limitations experienced.

    Relevance to clinical practice: Nurses have a major role to play in the care for people with irritable bowel syndrome. A caring perspective, in which the life-world is central, is an important approach to care for these persons. Using the dialogue as a forum where patients can share their unique life-world experiences lets nurses gather knowledge that is essential in helping patients identify and acknowledge new and positive understandings of the lived body.

  • 12.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Sahlberg-Blom, Eva
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Being in the patient position: experiences of health care among people with irritable bowel syndrome2010In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 20, no 8, p. 1116-27Article in journal (Refereed)
    Abstract [en]

    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.

  • 13.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Sahlberg-Blom, Eva
    Örebro universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Nyhlin, Henry
    Karolinska Institutet.
    Learning about oneself through others: experiences of a groupbased patient education programme about irritable bowel syndrome2012In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 26, no 4, p. 738-46Article in journal (Refereed)
    Abstract [en]

    Background: People with irritable bowel syndrome (IBS) often experience severe illness-related troubles in their everyday lives. Many persons also perceive their disease-related knowledge to be insufficient, and they feel dissatisfied with their inability to improve well-being. Previous research about patient education and IBS has emphasized biomedical outcomes of symptoms,health-promoting behaviours, coping and health-related quality of life, rather than people’s experiences.

    Aim: To explore people’s experiences of participating in a multidisciplinary group-based patient education programme about IBS and of the influence of this programme on everyday life with illness.

    Methods: Focus group interviews were performed with 31

    persons after their participation in the patient education programme. Interpretive description guided the inductive analysis of data. The study was approved by the local research ethics committee.

    Findings: The analysis revealed four patterns; being part of a safe community, learning about oneself through others, understanding and controlling the body and illness as awhole, and being outside of the community. The pattern of learning about oneself through others can be described as a reciprocal activity of learning by listening to, telling andobserving others. Being among similar others had created feelings among most of the focus group participants of being part of a safe community where taboo subjects related to IBS-symptoms could be outspoken. Understanding the body and illness as a whole had enhanced their ability to interpret bodily signals and to handle trouble some situations with greater self-confidence, and this regained their access to the social everyday world.

    Conclusion: The combination of reciprocal sharing of experiences and the provision of professional scientific knowledge during the patient education programme together contributed to a growing readiness to improve well-being in everyday life, for most of the participating individuals. This was based on new understandings of the body and illness as a whole and of new abilities to make knowledgebased decisions about what strategies to use in overcoming illness-related troubles.

  • 14.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Sandberg, Jonas
    Jönköpings universitet .
    Ekstedt, Mirjam
    Kungliga tekniska högskolan, Stockholm.
    Kenne Sarenmalm, Elisabeth
    Skaraborgs sjukhus.
    Christiansen, Mats
    Karolinska institutet.
    Öhlen, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Providing Palliative Care in a Swedish Support Home for People Who Are Homeless.2015In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557Article in journal (Refereed)
  • 15.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Department of Neurobiology, Care science and Society, Karolinska Institutet, Stockholm, Sweden.
    Seiger Cronfalk, Berit
    Ersta Sköndal University College, Palliative Research Centre, PRC. Department of Oncology/Pathology, Karolinska Institutet, Stockholm, Sweden, Stord Haugesund University College, Norway.
    Henrikssen, Eva
    Department of Neurobiology, Care science and Society, Karolinska Institutet, Stockholm, Sweden, FOUnu, Stockholm County Council, Stockholm, Sweden.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Research Centre, PRC. Department of Nursing, Umeå University, Umeå, Sweden.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC. Department of Neurobiology, Care science and Society, Karolinska Institutet, Stockholm, Sweden, Stockholms Sjukhem foundation, Research, Development and Education Unit, Stockholm, Sweden.
    Sandberg, Jonas
    Ersta Sköndal University College, Palliative Research Centre, PRC. Department of Nursing, School of Health Sciences, Jönköping University, Jönköping, Sweden.
    First-Line Nursing Home Managers in Sweden and their Views on Leadership and Palliative Care2014In: Open Nursing Journal, ISSN 1874-4346, E-ISSN 1874-4346, Vol. 8, p. 71-78Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to investigate first-line nursing home managers’ views on their leadership and related to that, palliative care. Previous research reveals insufficient palliation, and a number of barriers towards implementation of palliative care in nursing homes. Among those barriers are issues related to leadership quality. First-line managers play a pivotal role, as they influence working conditions and quality of care.

    Nine first-line managers, from different nursing homes in Sweden participated in the study. Semi-structured interviewswere conducted and analysed using qualitative descriptive content analysis. In the results, two categories were identified: embracing the role of leader and being a victim of circumstances, illuminating how the first-line managers handle expectations and challenges linked to the leadership role and responsibility for palliative care. The results reveal views corresponding to committed leaders, acting upon demands and expectations, but also to leaders appearing to have resigned from the leadership role, and who express powerlessness with little possibility to influence care. The first line managers reported their own limited knowledge about palliative care to limit their possibilities of taking full leadership responsibility for implementing palliative care principles in their nursing homes.

    The study stresses that for the provision of high quality palliative care in nursing homes, first-line managers need to be knowledgeable about palliative care, and they need supportive organizations with clear expectations and goals about palliative care. Future action and learning oriented research projects for the implementation of palliative care principles, in which first line managers actively participate, are suggested.

  • 16.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Öhlen, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC. Göteborgs universitet.
    Connectedness at the end of life among people admitted to inpatient palliative care2014In: The American Journal of Hospice and Palliative Medicine, ISSN 1049-9091, Vol. 33, no 1, p. 47-54Article in journal (Refereed)
    Abstract [en]

    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.

  • 17.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Öhlen, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC. Göteborgs universitet.
    Meanings and experiential outcomes of bodily care in a specialist palliative context2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 3, p. 625-633Article in journal (Refereed)
    Abstract [en]

    Objective: 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.

    Method: 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.

    Results: 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.

    Significance of results: 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.

  • 18.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Öhlén, Joakim
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Illness narratives of people who are homeless.2016In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 11, no 1, article id 32924Article in journal (Refereed)
    Abstract [en]

    Multiple illnesses are common in all homeless populations. While most previous studies have focused on experiences of mental illness, there is a scarcity of studies about experiences of bodily illness among people who are homeless. This study aimed to explore illness narratives of people who are homeless, and how homelessness as a social context shapes the experience of multiple and/or advancing somatic conditions. The design was a qualitative single-case study, using interpretive description. Data were generated through interviews, with nine participants who were homeless rough sleepers in Stockholm, Sweden, recruited while receiving care in a support home for homeless people with complex care needs. The findings revealed experiences of illness embedded in narratives about falling ill, being ill, and the future. The particularity of these illness narratives and the way that they are shaped by homelessness give rise to several observations: the necessity of a capable body for survival; chaos and profound solitude in illness and self-care management; ambiguous feelings about receiving care, transitioning from independence, and "freedom" in the streets to dependency and being institutionalized; and finally, the absence of hope and desire for recovery or a better future. The narratives are discussed from the perspective of Frank's four types of illness stories (restitution, chaos, quest, and testimony). The findings stress that to provide appropriate care and support to people who are homeless and have multiple and/or advancing somatic conditions, health care professionals need to be informed both about the individual's biography and about the circumstances under which illness and self-care takes place in the streets.

  • 19.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Öhlén, Joakim
    Göteborgs universitet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Cardenas-Turanzas, Marylou
    USA.
    Wilson, Donna M
    Kanada.
    Loucka, Martin
    Tjeckien.
    Frache, Sandra
    Frankrike.
    Giovannetti, Lucia
    Italien.
    Naylor, Wayne
    Nya Zeeland.
    Rhee, YongJoo
    Sydkorea.
    Ramos, Miguel Ruiz
    Spanien.
    Teno, Joan
    Belgien.
    Beernaert, Kim
    Belgien.
    Deliens, Luc
    Belgien.
    Houttekier, Dirk
    Belgien.
    Cohen, Joachim
    Belgien.
    Place of death of children with complex chronic conditions: cross-national study of 11 countries.2017In: European Journal of Pediatrics, ISSN 0340-6199, E-ISSN 1432-1076, Vol. 176, no 3, p. 327-335Article in journal (Refereed)
    Abstract [en]

    Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with complex chronic conditions (CCC) die and to investigate associations between places of death and sex, cause of death and country. The study used death certificate data of all deceased 1- to 17-year-old children (n = 40,624) who died in 2008, in 11 European and non-European countries. Multivariable logistic regression was performed to determine associations between place of death and other factors. Between 24.4 and 75.3% of all children 1-17 years in the countries died of CCC. Of these, between 6.7 and 42.4% died at home. In Belgium and the USA, all deaths caused by CCC other than malignancies were less likely to occur at home, whereas in Mexico and South Korea, deaths caused by neuromuscular diseases were more likely to occur at home than malignancies. In Mexico (OR = 0.91, 95% CI: 0.83-1.00) and Sweden (OR = 0.35, 95% CI: 0.15-0.83), girls had a significantly lower chance of dying at home than boys.

    CONCLUSION: This study shows large cross-national variations in place of death. These variations may relate to health system-related infrastructures and policies, and differences in cultural values related to place of death, although this needs further investigation. The patterns found in this study can inform the development of paediatric palliative care programs internationally. What is known: • There is a scarcity of population-level studies investigating where children with CCC die in different countries. • Cross-national understanding of place of death provides information to health care systems for providing efficient and equal access to paediatric palliative care. What is new : • There are large cross-national variations in the place of death of children with CCC, with few deathsoccuring at home in some countries whereas hospital deaths are generally most common. • In general, deaths caused by neuromuscular diseases and malignancies occur at home more often thanother CCC.

  • 20.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Öhlén, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC. Göteborgs universitet.
    Morin, Lucas
    Karolinska institutet.
    Cohen, Joachim
    Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium .
    A population-level study of place of death and associated factors in Sweden2015In: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 43, no 7, p. 744-751Article in journal (Refereed)
    Abstract [en]

    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.

  • 21.
    Håkansson, Cecilia
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Seiger Cronfalk, Berit
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Henriksen, Eva
    Karolinska institutet.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Sandberg, Jonas
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    First-line managers’ views on leadership and palliative care in Swedish nursing homes2014In: Open Nursing Journal, ISSN 1874-4346, E-ISSN 1874-4346, Vol. 8, p. 71-78Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to investigate first-line nursing home managers' views on their leadership and related to that, palliative care. Previous research reveals insufficient palliation, and a number of barriers towards implementation of palliative care in nursing homes. Among those barriers are issues related to leadership quality. First-line managers play a pivotal role, as they influence working conditions and quality of care. Nine first-line managers, from different nursing homes in Sweden participated in the study. Semi-structured interviews were conducted and analysed using qualitative descriptive content analysis. In the results, two categories were identified: embracing the role of leader and being a victim of circumstances, illuminating how the first-line managers handle expectations and challenges linked to the leadership role and responsibility for palliative care. The results reveal views corresponding to committed leaders, acting upon demands and expectations, but also to leaders appearing to have resigned from the leadership role, and who express powerlessness with little possibility to influence care. The first line managers reported their own limited knowledge about palliative care to limit their possibilities of taking full leadership responsibility for implementing palliative care principles in their nursing homes. The study stresses that for the provision of high quality palliative care in nursing homes, first-line managers need to be knowledgeable about palliative care, and they need supportive organizations with clear expectations and goals about palliative care. Future action and learning oriented research projects for the implementation of palliative care principles, in which first line managers actively participate, are suggested.

  • 22.
    O'Sullivan, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Öhlen, Joakim
    Göteborgs universitet.
    Håkanson, Cecilia
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Bereaved Family Members' Satisfaction with Care during the Last Three Months of Life for People with Advanced Illness.2018In: Healthcare (Basel, Switzerland), ISSN 2227-9032, Vol. 6, no 4, article id E130Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Studies evaluating the end-of-life care for longer periods of illness trajectories and in several care places are currently lacking. This study explored bereaved family members' satisfaction with care during the last three months of life for people with advanced illness, and associations between satisfaction with care and characteristics of the deceased individuals and their family members.

    METHODS: A cross-sectional survey design was used. The sample was 485 family members of individuals who died at four different hospitals in Sweden.

    RESULTS: Of the participants, 78.7% rated the overall care as high. For hospice care, 87.1% reported being satisfied, 87% with the hospital care, 72.3% with district/county nurses, 65.4% with nursing homes, 62.1% with specialized home care, and 59.6% with general practitioners (GPs). Family members of deceased persons with cancer were more likely to have a higher satisfaction with the care. A lower satisfaction was more likely if the deceased person had a higher educational attainment and a length of illness before death of one year or longer.

    CONCLUSION: The type of care, diagnoses, length of illness, educational attainment, and the relationship between the deceased person and the family member influences the satisfaction with care.

  • 23.
    O'Sullivan, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Öhlen, Joakim
    Göteborgs universitet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio palliativ vård Dalens sjukhus Stockholm.
    Håkanson, Cecilia
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Adaptation and validation of the VOICES (SF) questionnaire - for evaluation of end-of-life care in Sweden.2018In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 32, no 3, p. 1254-1260Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: Instruments for evaluating end-of-life care by voicing experiences of family members have previously been lacking in Sweden. The objective of this study was therefore to adapt and validate the VOICES (SF) questionnaire to evaluate quality of end-of-life care in Sweden. The VOICES (SF) [Views of Informal Carers - Evaluation of Services (Short form)] is a questionnaire about bereaved relatives' experiences of care in the last three months of life of a deceased family member.

    METHODS: This study was performed based on translation and back translation, cross-cultural adaptation and content validation through cognitive interviewing and feedback from professional experts. For the cognitive interviews, a purposeful sample of 35 bereaved family members was recruited from home care, hospital wards and nursing homes. The participants were 13 men and 22 women (age ranged between 20 and 90+, mean age 66), who were relatives of persons who died from life-limiting conditions. The bereaved family members' and the professional experts' concerns were summarised and analysed based on clarity, understanding, relevance, sensitivity and alternative response/wording.

    RESULTS: The main concerns emerging from the content validation related to the understanding and clarity of some of the questionnaire items', and a few concerns regarding the relevance of different response alternatives or items. Only two of the family members found it emotional to complete the questionnaire, and they still deemed completing it to be important and manageable.

    SIGNIFICANCE OF RESULTS: The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross-national comparisons between different healthcare places and organisations.

  • 24.
    Wallin, Viktoria
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Sandman, Per-Olof
    Karolinska institutet.
    Håkanson, Cecilia
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Meanings of eating deficiencies for people admitted to palliative home care2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 05, p. 1231-1239Article in journal (Refereed)
    Abstract [en]

    Food and eating are embedded in people's everyday social lives: at home with family members and as part of social interactions. For people with progressive life-limiting conditions, however, eating is often obstructed. The objective of the present study was to explore the meanings of living with eating deficiencies at the end of life among people admitted to specialist palliative home care.

    This qualitative inductive study employed an interpretive descriptive approach. A dozen persons, with various diagnoses and eating deficiencies, admitted to two specialist palliative home care units, participated. Data were collected through individual repeated interviews. Data collection and analysis were guided by the interpretive description method.

    The results reveal that eating deficiencies among people with progressive life-limiting conditions are existentially loaded markers of impending death. Finding ways to overcome declined food intake and hampered eating enabled our participants to feel able to influence their own well-being and remain hopeful. The results also showed that the eating deficiencies influenced participants' relationships and social interactions in ways that hampered their possibilities of sharing valuable moments together with friends and family members during the final period of life.

    Efforts to minimize the distress that people experience in relation to the challenges they face with eating deficiencies are important for well-being at the end of life. Person-centered approaches to acknowledge and support individuals' own ways of experiencing and dealing with their eating deficiencies are recommended that include a multidimensional perspective on food and eating.

  • 25.
    Wallin, Viktoria
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet, Ersta sjukhus.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Palliative Research Centre, PRC. Ersta sjukhus, Karolinska institutet.
    Sandman, Per-Olof
    Karolinska institutet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC. Ersta sjukhus, Karolinska institutet, Stockholms sjukhem.
    Håkanson, Cecilia
    Ersta Sköndal University College, Palliative Research Centre, PRC. Ersta sjukhus, Karolinska institutet.
    Maintaining ordinariness around food: partners' experienceies of everyday life with a dying person.2014In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 23, no 19-20, p. 2748-2756Article in journal (Refereed)
    Abstract [en]

    Aims and objectives: To explore partners’ experiences of everyday life in caring for a dying person with eating deficiencies at home.

    Background: When a dying person receives care at home, eating deficiencies can influence everyday life for family members, who often take responsibility for the provision of food and meals. The literature reveals this to be emotionally stressful. Partners of dying persons are challenged both as caregivers and as partners who will soon lose their life companion. There is a need for studies that provide enhanced understanding about the influence of dying persons’ eating deficiencies on their partners, from the perspective of everyday life.

    Design: A qualitative design was chosen to obtain experience-based knowledge of relevance for the clinical context of palliative home care.

    Methods: Nine people were purposefully selected and interviewed three–six months after the death of their partner. Data collection and analysis were guided by an interpretive descriptive method.

    Results: The partners described experiences of how eating deficiencies brought about changes in the participants’ everyday lives. Two patterns of experiences were identified: the challenge of doing the best for their dying partner around matters involving food and mealtimes, and experiences of striving to maintain ordinariness, including holding on to social values around food, despite experiences of unfamiliarity when the dying partners’ habits were changed.

    Conclusion:Living close to a person who has eating deficiencies at the end of life is challenging, both from a caring perspective and for personal well-being.

    Relevance to clinical practice: The findings can assist palliative home care teams and other healthcare professionals to give support that goes beyond giving practical advice about food. Initiating talk about the current situation around food and meals at home, by posing questions and opening the way for conversations, is suggested.

  • 26.
    Årestedt, Kristofer
    et al.
    Linnéuniversitetet, Linköpings universitet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio palliativ vård Dalens sjukhus Stockholm.
    Boman, Kurt
    Umeå universitet.
    Öhlén, Joakim
    Göteborgs universitet.
    Goliath, Ida
    Karolinska institutet.
    Håkanson, Cecilia
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Fürst, Carl Johan
    Lunds universitet, Region Skåne.
    Brännström, Margareta
    Umeå universitet.
    Symptom Relief and Palliative Care during the Last Week of Life among Patients with Heart Failure: A National Register Study.2018In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 21, no 3, p. 361-367Article in journal (Refereed)
    Abstract [en]

    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.

  • 27.
    Öhlén, Joakim
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Cohen, Joachim
    Belgien.
    Håkanson, Cecilia
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Determinants in the place of death for people with different cancer types: a national population-based study.2017In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 56, no 3, p. 455-461Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: 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.

    MATERIAL AND METHODS: 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.

    RESULTS: 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.

    CONCLUSION: 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.

  • 28.
    Öhlén, Joakim
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Reimer-Kirkham, Sheryl
    Kanada.
    Astle, Barbara
    Kanada.
    Håkanson, Cecilia
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Lee, Joyce
    Kanada.
    Eriksson, Marjukka
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Sawatzky, Richard
    Kanada.
    Person-centred care dialectics-Inquired in the context of palliative care.2017In: Nursing Philosophy, ISSN 1466-7681, E-ISSN 1466-769X, Vol. 18, no 4Article in journal (Refereed)
    Abstract [en]

    Although a widely used concept in health care, person-centred care remains somewhat ambiguous. In the field of palliative care, person-centred care is considered a historically distinct ideal and yet there continues to be a dearth of conceptual clarity. Person-centred care is also challenged by the pull of standardization that characterizes much of health service delivery. The conceptual ambiguity becomes especially problematic in contemporary pluralistic societies, particularly in the light of continued inequities in healthcare access and disparities in health outcomes. Our aim was to explicate premises and underlying assumptions regarding person-centred care in the context of palliative care with an attempt to bridge the apparently competing agendas of individualization versus standardization, and individuals versus populations. By positioning person-centredness in relation to the hermeneutics of the self according to Paul Ricœur, dialectics between individualization and standardization, and between individuals and populations were constructed. The competing agendas were related in a dialectic manner in the way that population health is of importance for the individual, and standardization is of importance for the population. The analysis suggests that person-centred care is an ethical stance, which gives prominence to both suffering and capability of the individual as a person. The dialectic analysis points towards the importance of extending person-centred care to encompass population and societal perspectives and thereby avoiding a problematic tendency of affiliating person-centred care with exclusively individualistic perspectives. Considerations for person-centred palliative care on micro-, meso- and macrolevels conclude the paper.

  • 29.
    Öhlén, Joakim
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Russell, Lara
    Kanada.
    Håkanson, Cecilia
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Lunds universitet, Karolinska institutet .
    Alvariza, Anette
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Lunds universitet, Karolinska institutet .
    Fürst, Carl Johan
    Lunds universitet, Karolinska institutet .
    Årestedt, Kristofer
    Linnéuniversitetet, Linköpings universitet.
    Sawatzky, Richard
    Kanada.
    Variations in care quality outcomes of dying people: Latent class analysis of an adult national register population.2017In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 53, no 1, p. 13-24Article in journal (Refereed)
    Abstract [en]

    CONTEXT: Symptom relief is a key goal of palliative care. There is a need to consider complexities in symptom relief patterns for groups of people in order to understand and evaluate symptom relief as an indicator of quality of care at end of life.

    OBJECTIVES: The aims of this study were to distinguish classes of patients who have different symptom relief patterns during the last week of life and to identify predictors of these classes in an adult register population.

    METHODS: In a cross-sectional retrospective design, data was used from 87,026 decedents with expected deaths registered in the Swedish Register of Palliative Care in 2011 and 2012. Study variables were structured into patient characteristics, and processes and outcomes of quality of care. A latent class analysis was used to identify symptom relief patterns. Multivariate multinomial regression analyses were used to identify predictors of class membership.

    RESULTS: Five latent classes were generated: "relieved pain", "relieved pain and rattles", "relieved pain and anxiety", "partly relieved shortness of breath, rattles and anxiety" and "partly relieved pain, anxiety and confusion". Important predictors of class membership were age, sex, cause of death, and having someone present at death, individual PRN prescriptions and expert consultations.

    CONCLUSION: Inter-individual variability and complexity in symptom relief patterns may inform quality of care and its evaluation for dying people across care settings.

1 - 29 of 29
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