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  • 1.
    Andersson, Sofia
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Learning, Informatics, Management and Ethics/MMC, Karolinska Institutet, Stockholm, Sweden.
    Fürst, Carl-Johan
    The Institute for Palliative Care, Lund University and Region Skåne, Lund, Sweden.
    Brännström, Margareta
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Umeå universitet, Arktiskt centrum vid Umeå universitet (Arcum).
    Care professional's experiences about using Liverpool Care Pathway in end-of-life care in residential care homes2018Inngår i: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 32, nr 1, s. 299-308Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Residential care homes (RCHs) play an important role in end-of-life care, being the most common place of death for elderly people in several European countries. Care pathways such as the Liverpool Care Pathway for the Dying Patient (LCP) are used to improve and ensure quality care at the end of life. There is a lack of scientific evidence supporting the use of care pathways.

    DESIGN: A descriptive qualitative study.

    OBJECTIVE: The aim was to describe care professionals' experiences of using the Liverpool Care Pathway for the Dying Patient in the care of dying residents in residential care homes.

    METHODS: Five focus group interviews and two individual interviews with enrolled nurses (n = 10), Registered Nurses (n = 9) and general practitioners (n = 5) were carried out and analysed using qualitative content analysis.

    RESULTS: Care professionals expressed that they became confident through a shared approach to care, were supported to tailor the care according to the residents' individual needs, were supported to involve family members in decision-making and care and became more aware of the care environment.

    CONCLUSION: The results of this study indicate that the LCP might be a useful tool for care professionals in improving end-of-life care in RCHs through increased attention to the goals of care, the individual needs of residents and family involvement.

  • 2.
    Andersson, Sofia
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Learning, Informatics, Management and Ethics/MMC, Karolinska Institutet, Stockholm, Sweden.
    Fürst, Carl-Johan
    Brännström, Margareta
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    End-of-life care in residential care homes: a retrospective study of the perspectives of family members using the VOICES questionnaire2017Inngår i: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 31, nr 1, s. 72-84Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: In Europe, residential care homes (RCHs) are replacing hospitals as the place where death occurs, and they play an important role in end-of-life (EOL) care.

    OBJECTIVE: The aim was to describe the quality of care during the last 3 months and last 3 days of life of those who died in RCHs as reported by family members. We also investigated whether there were differences in the EOL care of younger patients (<85 years) vs. the oldest old patients (≥85 years) as reported by family members.

    DESIGN: A retrospective survey design.

    METHODS: Deaths (n = 189) at 19 RCHs in one municipality in Sweden were included. Family members were sent the VOICES questionnaire 1 month after their elderly relative had died. Descriptive statistics were used.

    RESULTS: In the last 3 days before death, most family members reported there was enough help with nursing (93%) and personal care (78.5%). Among the family members, 86% were told that the resident was likely to die shortly. Most (94.1%) of residents were reported to have died at their preferred place. No significant difference was found between age groups. Family members also reported that about half of the elderly had pain (46.5%) and 86.4% received treatment; 55.9% had breathlessness and 39.7% received treatment. Breathlessness was significantly (p = 0.01) more common in the younger group, and they were treated more often (p = 0.006) than the oldest old.

    CONCLUSION: This study revealed an overall positive picture of personal and nursing care and communication. These findings indicate that the quality of EOL care at RCHs is high. Inadequate management was found for symptom relief the last days of life. This suggests that this subject merits further attention by care professionals. To achieve better quality of EOL care at RCHs, we emphasise the importance of systematically working to improve symptom relief.

  • 3.
    Andersson, Sofia
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Learning, Informatics, Management and Ethics/MMC, Karolinska Institutet, Stockholm, Sweden.
    Fürst, Carl-Johan
    The Institute for Palliative Care, Faculty of Medicine, Department of Clinical Science, Lund University and Region Skåne, Lund, Sweden.
    Brännström, Margareta
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Family members' experiences of care of the dying in residential care homes where the Liverpool Care Pathway was used2018Inngår i: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 24, nr 4, s. 194-202Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Residential care homes (RCHs) are increasingly becoming a common place of death for older people.

    Aim: The aim of this study was to describe family members' experiences of care of the dying in RCHs where the Liverpool care pathway for the dying patient was used.

    Methods: This study had a descriptive qualitative study design. Fifteen (n=15) individual interviews were analysed using qualitative content analysis.

    Results: The analysis resulted in three themes: being confident in a familiar and warm atmosphere, being involved vs not being involved in end-of-life (EoL) care, and being consoled by witnessing the health professional's endeavour to relieve suffering.

    Significance of results: The results indicated that taking part in a care plan seems to increase family members' feelings of involvement in EoL care. This study also highlights the family members' needs for increased possibilities for EoL discussions with the GP.

  • 4.
    Andersson, Sofia
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Årestedt, Kristofer
    Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden.
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Learning, Informatics, Management and Ethics/MMC, Karolinska Institutet, Stockholm.
    Fürst, Carl Johan
    The Institute for Palliative Care, Faculty of Medicine, Department of Clinical Science, Lund University and Region Skåne, Lund, Sweden.
    Brännström, Margareta
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Umeå universitet, Arktiskt centrum vid Umeå universitet (Arcum). Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg.
    Factors associated with symptom relief in end-of-life care in residential care homes: a national register-based study2018Inngår i: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 55, nr 5, s. 1304-1312Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Context: Residential care homes (RCHs) are a common place of death. Previous studies have reported a high prevalence of symptoms such as pain and shortness of breath among residents in the last week of life.

    Objectives: The aim of the study was to explore the presence of symptoms and symptom relief and identify factors associated with symptom relief of pain, nausea, anxiety, and shortness of breath among RCH residents in end-of-life care.

    Methods: The data consisted of all expected deaths at RCHs registered in the Swedish Register of Palliative Care (N = 22,855). Univariate and multiple logistic regression analyses were conducted.

    Results: Pain was reported as the most frequent symptom of the four symptoms (68.8%) and the one that most often had been totally relieved (84.7%) by care professionals. Factors associated with relief from at least one symptom were gender; age; time in the RCH; use of a validated pain or symptom assessment scale; documented end-of-life discussions with physicians for both the residents and family members; consultations with other units; diseases other than cancer as cause of death; presence of ulcers; assessment of oral health; and prescribed pro re nata injections for pain, nausea, and anxiety.

    Conclusion: Our results indicate that use of a validated pain assessment scale, assessment of oral health, and prescribed pro re nata injections for pain, nausea, and anxiety might offer a way to improve symptom relief. These clinical tools and medications should be implemented in the care of the dying in RCHs, and controlled trials should be undertaken to prove the effect.

  • 5. Benedetti, Franzisca Domeisen
    et al.
    Ostgathe, Christoph
    Clark, Jean
    Costantini, Massimo
    Daud, Maria Laura
    Grossenbacher-Gschwend, Barbara
    Latten, Richard
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Peternelj, Andreja
    Schuler, Stefanie
    Tal, Kali
    van der Heide, Agnes
    Eychmueller, Steffen
    International palliative care experts' view on phenomena indicating the last hours and days of life2013Inngår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 21, nr 6, s. 1509-1517Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Providing the highest quality care for dying patients should be a core clinical proficiency and an integral part of comprehensive management, as fundamental as diagnosis and treatment. The aim of this study was to provide expert consensus on phenomena for identification and prediction of the last hours or days of a patient's life. This study is part of the OPCARE9 project, funded by the European Commission's Seventh Framework Programme. The phenomena associated with approaching death were generated using Delphi technique. The Delphi process was set up in three cycles to collate a set of useful and relevant phenomena that identify and predict the last hours and days of life. Each cycle included: (1) development of the questionnaire, (2) distribution of the Delphi questionnaire and (3) review and synthesis of findings. The first Delphi cycle of 252 participants (health care professionals, volunteers, public) generated 194 different phenomena, perceptions and observations. In the second cycle, these phenomena were checked for their specific ability to diagnose the last hours/days of life. Fifty-eight phenomena achieved more than 80 % expert consensus and were grouped into nine categories. In the third cycle, these 58 phenomena were ranked by a group of palliative care experts (78 professionals, including physicians, nurses, psycho-social-spiritual support; response rate 72 %, see Table 1) in terms of clinical relevance to the prediction that a person will die within the next few hours/days. Twenty-one phenomena were determined to have "high relevance" by more than 50 % of the experts. Based on these findings, the changes in the following categories (each consisting of up to three phenomena) were considered highly relevant to clinicians in identifying and predicting a patient's last hours/days of life: "breathing", "general deterioration", "consciousness/cognition", "skin", "intake of fluid, food, others", "emotional state" and "non-observations/expressed opinions/other". Experts from different professional backgrounds identified a set of categories describing a structure within which clinical phenomena can be clinically assessed, in order to more accurately predict whether someone will die within the next days or hours. However, these phenomena need further specification for clinical use.

  • 6.
    Brännström, Margareta
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Fürst, Carl Johan
    Tishelman, Carol
    Petzold, Max
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Medical Management Centre (MMC), Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Effectiveness of the Liverpool care pathway for the dying in residential care homes: An exploratory, controlled before-and-after study2016Inngår i: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 30, nr 1, s. 54-63Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Clinical pathways aim to ensure that individuals receive appropriate evidence-based care and interventions, with the Liverpool Care Pathway for the Dying Patient focusing on end of life. However, controlled studies of the Liverpool Care Pathway for the Dying Patient, particularly outside of cancer settings, are lacking.

    AIM: To compare the effects of the Liverpool Care Pathway for the Dying Patient and usual care on patients' symptom distress and well-being during the last days of life, in residential care homes.

    DESIGN: Exploratory, controlled before-and-after study. During a 15-month baseline, usual care was carried out in two areas. During the following 15-months, usual care continued in the control area, while residential care home staff implemented Liverpool Care Pathway for the Dying Patient use in the intervention area. The intervention was evaluated by family members completing retrospective symptom assessments after the patient's death, using the Edmonton Symptom Assessment System and Views of Informal Carers - Evaluation of Services.

    SETTINGS/PARTICIPANTS: Patients who died at all 19 residential care homes in one municipality in Sweden.

    RESULTS: Shortness of breath (estimate = -2.46; 95% confidence interval = -4.43 to -0.49) and nausea (estimate = -1.83; 95% confidence interval = -3.12 to -0.54) were significantly reduced in Edmonton Symptom Assessment System in patients in the intervention compared to the control area. A statistically significant improvement in shortness of breath was also found on the Views of Informal Carers - Evaluation of Services item (estimate = -0.47; 95% confidence interval = -0.85 to -0.08).

    CONCLUSION: When implemented with adequate staff training and support, the Liverpool Care Pathway for the Dying Patient may be a useful tool for providing end-of-life care of elderly people at the end of life in non-cancer settings.

  • 7. Cleeve, Helena
    et al.
    Tishelman, Carol
    Macdonald, Alastair
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Karolinska Institutet, LIME, MMC, Innovative Care research group, Stockholm, Sweden.
    Goliath, Ida
    Not just things: the roles of objects at the end of life2018Inngår i: Sociology of Health and Illness, ISSN 0141-9889, E-ISSN 1467-9566, Vol. 40, nr 4, s. 735-749Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    While the study of objects in care contexts is an emerging research field, it is largely overlooked in end of life (EoL) care. In this study, we empirically and inductively explore the roles of objects at the EoL from the perspective of bereaved family members. Open individual interviews were conducted with 25 family members recruited from palliative in-patient and homecare units, as well as residential care facilities. After verbatim transcription, the interviews were analysed thematically. Based on these interviews, we conceptualise the roles of objects as relating to temporality, transformations of the everyday, and care. Through analysis we offer two main insights, the first relating to interdependency between objects and people, and the second to the recognition of objects as simultaneously flexible and stable in this interdependent relationship. The capacity and challenge of objects as part of EoL care lies in their ability to encompass various viewpoints and relationships simultaneously. This might provide valuable insights for staff caring for dying persons and their families. We propose that staff's ability to navigate objects in care practices could be meaningful in supporting the relationships between individuals in EoL situations.

  • 8.
    Forsberg, Karl-Anton
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Björkman, Tommy Nils
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Sandlund, Mikael
    Umeå universitet, Medicinska fakulteten, Institutionen för klinisk vetenskap, Psykiatri.
    Sandman, Per Olof
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Meanings of participating in a lifestyle programme for persons with psychiatric disabilities.2011Inngår i: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 25, nr 2, s. 357-364Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Lifestyle changes that affect physical and psychological health are described in research literature; however, the meaning of participating in a lifestyle intervention programme together with the staff has not been described. This study illuminates meanings of participating in a lifestyle programme as experienced by persons with psychiatric disabilities. The first author interviewed five women and six men with schizophrenia and depressive syndrome, aged 26-53, participating in a lifestyle programme. The transcribed interviews were analysed using a phenomenological hermeneutic approach inspired by the philosophy of Ricoeur. Meanings of participating in a lifestyle programme include my health can be improved as both the physical effects and the obstacles are considered and the daily life is partially given a changed content in new experiences and by participating in something to take pride in. The meanings of participating together with the staff mean an increased sense of closeness and equality with the staff expressed in changes in relationships and the difference between the two groups being revealed and also in becoming aware of the life situation, an insight into the loss of a healthy life but also hope for the future is expressed. The conclusions that could be drawn from this study are that a lifestyle intervention affects health and other important life areas such as the content of daily life and the relationship with the carers, which appears to affect the sense of hope and the ability to see new possibilities. Carers should find situations and activities where the residents and carers participate under equal conditions giving the residents the opportunity to leave the sick roll, experience equality and develop good relationships.

  • 9. Hajradinovic, Yvonne
    et al.
    Tishelman, Carol
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Division of Innovative Care Research, Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Goliath, Ida
    Family members' experiences of the end-of-life care environments in acute care settings: A photo-elicitation study2018Inngår i: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 13, nr 1, artikkel-id 1511767Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Purpose: This article explores experiences of the acute-care environment as a setting for end-of-life (EoL) care from the perspective of family members of a dying person.

    Method: We used participant-produced photographs in conjunction with follow-up interviews with nine family members to persons at the EoL, cared for in two acute-care settings.

    Results: The interpretive description analysis process resulted in three constructed themes-Aesthetic and unaesthetic impressions, Space for privacy and social relationships, and Need for guidance in crucial times. Aspects of importance in the physical setting related to aesthetics, particularly in regard to sensory experience, and to a need for enough privacy to facilitate the maintenance of social relationships. Interactions between the world of family members and that of professionals were described as intrinsically related to guidance about both the material and immaterial environment at crucial times.

    Conclusion: The care environment, already recognized to have an impact in relation to patients, is concluded to also affect the participating family members in this study in a variety of ways.

  • 10. Holm, Maja
    et al.
    Doveson, Sandra
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Learning, Informatics, Management & Ethics, Karolinska Institutet, Sweden.
    Wennman-Larsen, Agneta
    Fransson, Per
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Quality of life in men with metastatic prostate cancer in their final years before death: a retrospective analysis of prospective data2018Inngår i: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 17, artikkel-id 126Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Quality of Life (QoL) is the most important outcome for patients in palliative care along with symptom alleviation. Metastatic prostate cancer (mPC) is a life-threatening illness, and hence, a palliative care approach may be beneficial to this group. Over time, new life-prolonging treatments have been developed for men with mPC, but the possibility to prolong life should also be balanced against the men’s QoL, particularly because there are side effects involved with these treatments. The aim of this study was to evaluate QoL, functioning and symptoms in men with mPC during their final years before death.

    Methods: This is a retrospective analysis of data from a long-term prospective study of men (n = 3885) with prostate cancer from two regions in Sweden. Validated questionnaires asking about participants’ QoL, functioning and symptoms were used to collect data. From the overall study, 190 men with mPC were identified. They were stratified into three groups, depending on the amount of time that had passed between the last questionnaire and their death; < 6 months, 6–18 months and > 18 months before death.

    Results: Men with mPC generally rated their QoL poorly compared to established clinically significant threshold values. The group of men that were < 6 months before death rated their QoL, functioning and several symptoms significantly worse than the two other groups. Men that died after the year 2006 reported lower QoL and functioning and more pain and fatigue than those who died before 2006.

    Conclusion: The results in this study indicate that men with mPC have unmet needs with regards to QoL and symptoms. A palliative care approach, alongside possible life-prolonging treatments, that focuses on QoL and symptom relief, may serve as an important frame to give the best support to these men in their final years of life.

  • 11. Kjellgren, Helena
    et al.
    Tishelman, Carol
    Macdonald, Alastair
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Karolinska Institutet, LIME, MMC, Innovative Care research group, Stockholm, Sweden.
    Goliath, Ida
    Exploring Objects at the End of Life2016Inngår i: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 52, nr 6, s. E37-E37Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Objectives: While there has been an increasing recognition that the physical setting matters in end-of-life (EoL) care, objects (e.g. beds, socks, hearing aids) are notably overlooked and it is unknown how they add meaning to care settings, particularly beyond usability and functionality. In our study, we set out to explore the EoL setting from the perspective of family members. Through a preliminary analysis we noted that objects were mentioned throughout the narratives and therefore we focused our analysis on exploring the roles of objects. Methods: We interviewed 25 family members, recruited from residential care facilities, as well as palliative in-patient and homecare units, who had witnessed the dying and death of someone close to them. The interviews were prompted by open inquiries about EoL experiences, rather than specific questions about settings. The narratives were transcribed verbatim and analyzed using thematic analysis. Results: Objects were conceptualized as having interconnected roles relating to temporality, the everyday, and care. Many talked about rearranging objects to mark beginnings and ends in moments of transitions and thus rendering temporality tangible. Simultaneously, objects had roles in transforming everyday life and were assigned new meanings through the contexts they were part of. Objects were also interpreted as signs of care, where lack of sensitivity towards surrounding objects was associated with poor care. Conclusions: Our results indicate that objects are dynamic, in that interaction with objects and the meaning of these interactions change throughout the dying process. This contrasts with other studies, which have tended to approach the EoL settings as discrete with predefined properties, reinforcing instrumental and unidirectional understandings of relationships between people and settings. Our study expands on knowledge of objects in EoL processes and we argue the potential of this knowledge as a means to enhance supportive EoL settings.

  • 12. Kleijberg, Max
    et al.
    Ahlberg, Beth Maina
    Macdonald, Alastair
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Tishelman, Carol
    Navigating power dynamics in engaging communities in end-of-life issues?: Lessons learned from developing community-based intergenerational arts initiatives about death and loss2019Inngår i: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Lack of community engagement in end-of-life issues and age-segregation in Swedish society motivated us to develop Studio DöBra, a community-based intergenerational arts initiative to support community engagement in end-of-life issues and develop intergenerational meeting places. Representatives from several community organizations formed a project group with first author MK, to develop Studio DöBra. Based on analysis of exploratory interviews with professionals involved in other, similar initiatives and data from Studio DöBra development, we discuss challenges related to power dynamics in developing initiatives to engage communities in end-of-life issues, and how these can inform the development of similar initiatives.

  • 13.
    Lindqvist, Olav
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lundh Hagelin, Carina
    Lundquist, Gunilla
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi.
    Sauter, Sylvia
    Lunder, Urska
    Rasmussen, Birgit
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Tishelman, Carol
    Fürst, Carl Johan
    OPCARE9 work package 3: complementary comfort care at the end of life2012Inngår i: European Journal of Palliative Care, ISSN 1352-2779, E-ISSN 1479-0793, Vol. 19, nr 2, s. 69-72Artikkel i tidsskrift (Annet vitenskapelig)
  • 14.
    Lindqvist, Olav
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Karolinska Inst, Dept Learning Informat Management & Eth, Med Management Ctr, Stockholm, Sweden.
    Rasmussen, Birgit H.
    Furst, Carl Johan
    Tishelman, Carol
    Opening the doors a crack wider: palliative care research data in the public domain2016Inngår i: BMJ Supportive & Palliative Care, ISSN 2045-435X, E-ISSN 2045-4368, Vol. 6, nr 1, s. 113-115Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    This report builds further on OPCARE9, an EU 7th framework project aiming to identify knowledge gaps in care provision in the last days of life. This study began with curiosity about new ways of generating research questions to meet future challenges in palliative care (PC) and how to better engage disciplines not generally included in PC research. We here describe an innovative methodological approach to generating data; put data relevant for PC research in the public domain; and raise issues about open access in PC research. We aimed to compile research questions from different disciplines, based on raw data consisting of approximately 1000 descriptions of non-pharmacological caregiving activities (NPCAs), generated through previous research. 53 researchers from different fields were sent the full list of NPCAs and asked to generate research questions from their disciplinary perspective. Responses were received from 32 researchers from 9 countries, generating approximately 170 research topics, questions, reflections and ideas, from a wide variety of perspectives, which are presented here. Through these data, issues related to death and dying are addressed in several ways, in line with a new public health approach. By engaging a broader group of disciplines and facilitating availability of data in the public domain, we hope to stimulate more open dialogue about a wider variety of issues related to death and dying. We also introduce an innovative methodological approach to data generation, which resulted in a response rate at least equivalent to that in our Delphi survey of professionals in OPCARE9.

  • 15.
    Lindqvist, Olav
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi.
    Rasmussen, Birgit H
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Widmark, Anders
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi.
    Experiences of symptoms in men with hormone refractory prostate cancer and skeletal metastases2008Inngår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 12, nr 4, s. 283-290Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Advanced prostate cancer with skeletal metastases entails significant symptoms from both treatment and the disease itself. Although the diagnosis is a common one, knowledge of the symptom experience late in the disease trajectory is limited. The aim of the present study was to describe the experience of physical symptoms in men with hormone refractory prostate cancer and skeletal metastases. Twenty men answered a quality of life questionnaire before participating in semi-structured interviews. The interviews were analyzed using qualitative description. Findings show that the dominant symptoms were lack of energy and pain. Interestingly when talking about lacking energy the men described three different variants; lack of mental energy or initiative, lack of strength and stamina, and tiredness or sleepiness. Also, three different types of pain were described; pain from skeletal metastases, a diffuse moving pain, and pain not directly caused by the prostate cancer. Though a majority of the men scored being dissatisfied with their sex life; in the interviews, this was not described as a major distress. The findings also showed that the men experienced different symptoms despite the same diagnosis, skeletal metastases, stage, and androgen deprivation treatment, and that these symptoms are not necessarily experienced as problems or causing distress.

  • 16.
    Lindqvist, Olav
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Rasmussen, Birgit H
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Widmark, Anders
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi.
    Hydén, Lars-Christer
    Time and bodily changes in advanced prostate cancer: Talk about time as death approaches.2008Inngår i: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 36, nr 6, s. 648-656Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The disease trajectory of living with incurable cancer is characterized by increasing bodily deterioration and problems. In this paper, we have focused on the change in temporal awareness as manifested in the narrations of two men with hormone refractory prostate cancer and skeletal metastases as they approach death. The two men participated in in-depth research interviews during the last part of their lives, sharing a similar disease trajectory with increasing bodily change and decreasing physical function. Both died a lingering, cancer-related death. The first and last research interviews were analyzed using a discourse analytic method. Findings show that the temporal awareness in the interviews changes as the illness progresses and death approaches. In the last interviews, the present is flooded with bodily problems; the past and the future are hardly present except for the future beyond the men's own deaths. Pain, fatigue, nausea, and other symptoms figure largely in this change, and there is no time for much more than attending to bodily needs in a present that is dominated by problems. Here, the importance of alleviating bodily problems once again becomes paramount, and two questions are raised: Is the often reported withdrawal from life, when death is imminent, a physical necessity rather than a psychological one, and is it possible to free time from the time-consuming problems of the present by means of a more concentrated attempt to alleviate these problems?

  • 17.
    Lindqvist, Olav
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Karolinska University Hospital, Sweden.
    Threlkeld, Guinever
    Street, Annette F
    Tishelman, Carol
    Reflections on using biographical approaches in end-of-life care: dignity therapy as example2015Inngår i: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 25, nr 1, s. 40-50Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The therapeutic potential of nonpharmacologic interventions using biographical approaches at the end of life (EoL) is being increasingly recognized, but less attention is paid to processes impeding realization of this potential. In this article, Swedish and Australian researchers reflect on and problematize experiences using one biographical approach, dignity therapy (DT), in EoL care in Sweden. We use this as an example, focusing on critical examination of the process of applying DT in practice, examining frictions experienced in recruiting participants, collecting the data, and creating a biography. We discuss issues regarding agency, which became evident in the recruitment process and choices made about participation, and the power differentials manifested in the interactive process of eliciting stories and crafting them into a final product. We also raise salient questions about how research and practice with biographical approaches in EoL care might better build on and further existing knowledge to better reflect the complexities of everyday life.

  • 18.
    Lindqvist, Olav
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Tishelman, Carol
    Going public: reflections on developing the DöBra research program for health-promoting palliative care in Sweden2016Inngår i: Progress in Palliative Care, ISSN 0969-9260, E-ISSN 1743-291X, Vol. 24, nr 1, s. 19-24Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Introduction: Public health approaches to end-of-life (EoL) research and care are relatively rare in Sweden, and health-promoting palliative care (HPPC) remains a foreign concept for most. We recently consolidated our HPPC endeavors into a cohesive research program, DöBra, to promote constructive change and awareness to support better quality of life and death among the general population, in specific sub-groups, and in interventions directed to professional groups caring for dying individuals, their friends and families.

    Objectives: In this article, we aim to share ideas, experiences, and reflections from the early stages of this research program, particularly in relation to how we try to work with new 'publics', to contribute to the development of HPPC as a new research field.

    Methods and Results: We discuss some considerations which arise in the Swedish context, and present the underlying ideas and approaches used in the research program, with examples of their application. HPPC, based on ideas from new public health, is essential as an umbrella for the DöBra program. Action research, experience-based co-design, and knowledge exchange, all aim to bring together a variety of stakeholders to exchange ideas and expertise, and co-create experience-based evidence through knowledge generation, dissemination, and sharing.

    Discussion: In reflecting on what we have learned about publics and partnerships in EoL research to date, we question distinctions made between professionals and publics, concluding that including publics in public health research, means also including ourselves and making public many of the reflections, the mistakes, and the experiences we all have, to foster collective learning.

  • 19.
    Lindqvist, Olav
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Tishelman, Carol
    Room for Death - International museum-visitors' preferences regarding the end of their life2015Inngår i: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 139, s. 1-8Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Just as pain medications aim to relieve physical suffering, supportive surrounding for death and dying may facilitate well-being and comfort. However, little has been written of the experience of or preferences for the surroundings in which death and dying take place. In this study, we aim to complement our research from perspectives of patients, family members and staff, with perspectives from an international sample of the general public. Data derives from a project teaming artists and craftspeople together to create prototypes of space for difficult conversations in end-of-life (EoL) settings. These prototypes were presented in a museum exhibition, "Room for Death", in Stockholm in 2012. As project consultants, palliative care researchers contributed a question to the public viewing the exhibition, to explore their reflections: "How would you like it to be around you when you are dying?" Five-hundred and twelve responses were obtained from visitors from 46 countries. While preliminary analysis pointed to many similarities in responses across countries, continued analysis with a phenomenographic approach allowed us to distinguish different foci related to how preferences for surroundings for EoL were conceptualized. Responses were categorized in the following inductively-derived categories: The familiar death, The 'larger-than life' death, The lone death, The mediated death, The calm and peaceful death, The sensuous death, The 'green' death, and The distanced death. The responses could relate to a single category or be composites uniting different categories in individual combinations, and provide insight into different facets of contemporary reflections about death and dying. Despite the selective sample, these data give reason to consider how underlying assumptions and care provision in established forms for end-of-life care may differ from people's preferences. This project can be seen as an example of innovative endeavors to promote public awareness of issues related to death and dying, within the framework of health-promoting palliative care. (C) 2015 Elsevier Ltd. All rights reserved.

  • 20.
    Näppä, Ulla
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi. Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Axelsson, Bertil
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi.
    Avoiding harmful palliative chemotherapy treatment in the end of life: development of a brief patient-completed questionnaire for routine assessment of performance status2012Inngår i: The journal of supportive oncology, ISSN 1544-6794, Vol. 10, nr 6, s. 230-237Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Earlier studies have shown that up to 43% of patients with incurable cancer are treated with palliative chemotherapy in the last month of their lives. Although pretreatment blood tests are acceptable, the patient's general condition may not permit further palliative chemotherapy treatment (PCT). Presently, there is no patient self-assessment tool available to monitor performance status during PCT.

    OBJECTIVES: To describe the development process of the Performance Status in Palliative Chemotherapy (PSPC) questionnaire, and the testing of its psychometric properties.

    METHODS: The questionnaire was developed by the authors based on the Eastern Cooperative Oncology Group Performance Status Rating (ECOG PSR) scale as well as their clinical experience with PCT. Adult patients who were diagnosed with epithelial cancers (n = 118) were enrolled to test the PSPC questionnaire for reliability, sensitivity for change, and validity.

    RESULTS: After stepwise modifications of the PSPC questionnaire, psychometric tests revealed acceptable values for reliability (via a test-retest method), sensitivity for change (via a comparison of patients with progressive disease over time), and validity (via a comparison of the PSPC vs the Edmonton Symptom Assessment System [ESAS]).

    LIMITATIONS: At this stage of questionnaire development, we are unable to conclude whether the PSPC is superior to the conventional ECOG PSR in the evaluation of performance status and the prediction of chemotherapy response.

    CONCLUSION: Psychometric tests suggest that the PSPC questionnaire may be a useful patient-completed tool in the late stages of cancer disease to routinely monitor performance status in palliative chemotherapy treatments so as to minimize the risk of inflicting more harm than good.

  • 21.
    Näppä, Ulla
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi. Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Rasmussen, Birgit H
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Axelsson, Bertil
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi.
    Can a performance status questionnaire decrease palliative chemotherpy in the last months of life?Manuskript (preprint) (Annet vitenskapelig)
    Abstract [en]

    Background: Physicians often offer further palliative chemotherapy treatments (PCT) late in the cancer disease trajectory, even when treatment benefits are doubtful.

    Objective: Our main aim was to investigate whether routine use of the Performance Status in Palliative Chemotherapy (PSPC) questionnaire would affect the proportions of patients receiving PCT during the last month of life, hospital admissions, documentation of performance status and the decisions to cease PCT, and/or place of death. A secondary aim was to gather registered nurses’ experiences of PSPC in routine use.

    Methods: Eighty incurable patients with cancer who had used the PSPC before PCT were compared to 160 matched controls, using non-parametric tests. Patients’ comments in the questionnaires were analyzed and nurses reflections collected in a work-journal.

    Results: No significant differences were found between users or non-users of the PSPC in terms of proportions receiving PCT during the last month of life. Higher proportions of patients older than 74 years received PCT than in previous studies (38% versus 17%). Nurses considered the questionnaires superior to verbal communication in providing accurate pictures of patients’ performance status.

    Limitations: The results of this interim analysis could have been more significant if the originally planned number of patients had been recruited.

    Conclusion: The proportion of patients receiving PCT during the last month of life was lower than in a previous study (25% versus 32%). As we found no significant differences between the study group and the control group, we cannot claim this to be an effect of PSPC use.

  • 22.
    Näppä, Ulla
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper. Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Learning, Informatics, Management and Ethics/Medical Management Centre, Karolinska Institutet, S-171 77 Stockholm, Sweden.
    Rasmussen, Birgit H.
    Axelsson, Bertil
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper.
    Routine assessment of performance status during palliative chemotherapy when approaching end-of-life2016Inngår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 21, s. 266-271Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Purpose: Palliative chemotherapy treatment (PCT) offered late in the cancer disease trajectory may be problematic. It is not easy to accurately calculate whether the potential benefits will outweigh the side effects. This study investigates whether routine use of the Performance Status in Palliative Chemotherapy questionnaire (PSPC) affects the proportions of patients receiving PCT during the last month of life, care utilization, and documentation routines. A secondary aim was to gather registered nurses' experiences of the PSPC in routine use.

    Methods: Eighty incurable patients with cancer who had used the PSPC before PCT were compared to 160 matched controls, using non-parametric tests. Nurses' reflections on the PSPC were collected and reviewed.

    Results: No significant differences were found between users and non-users of the PSPC in terms of proportions receiving PCT during the last month of life. Higher proportions of patients older than 74 years received PCT than in previous studies (40% versus 17%). Nurses considered the questionnaires to be a valuable complement to verbal information when trying to acquire an accurate picture of patients' performance status.

    Conclusion: At this point in the development of the PSPC we did not find any significant decreases in the proportion of patients receiving PCT during the last month in life. However, as the nurses valued the PSPC, it can be used as a complementary tool in assessment of performance status until further research is conducted. 

  • 23.
    Näppä, Ulla
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi. Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Rasmussen Holritz, Birgit
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Axelsson, Bertil
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi.
    Palliative chemotherapy during the last month of life2011Inngår i: Annals of Oncology, ISSN 0923-7534, E-ISSN 1569-8041, Vol. 22, nr 11, s. 2375-2380Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: This study analyses the potential discriminative characteristics for patients with incurable cancer who received palliative chemotherapy during their last month of life.

    PATIENTS AND METHODS: The study includes all patients with epithelial cancer treated with palliative chemotherapy who died in 2008 in northern Sweden. Demographic parameters and care utilization data were registered. Data were analyzed using nonparametric methods.

    RESULTS: Of 374 included patients, 87 (23%) received chemotherapy during the last month of life. These patients had a significantly shorter survival time from first palliative treatment to death, were admitted more frequently to hospital, more often lacked a documented decision to cease treatment, and died less frequently at home.

    CONCLUSIONS: The results indicate covariations between palliative chemotherapy treatments in the last month of life and unfavorable patient outcomes. As almost one of four patients with incurable cancer received their last round of palliative chemotherapy <31 days before death, there is a potential for improved routines.

  • 24.
    Näppä, Ulla
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi.
    Rasmussen, Birgit H
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Axelsson, Bertil
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi.
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Learning, Informatics, Management and Ethics/Medical Management Centre, Karolinska Institutet, Stockholm, Sweden.
    Challenging situations when administering palliative chemotherapy: a nursing perspective2014Inngår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, nr 6, s. 591-597Artikkel i tidsskrift (Annet vitenskapelig)
    Abstract [en]

    Palliative chemotherapy treatments (PCT) are becoming more common for patients with incurable cancer; a basic challenge is to optimize tumour response while minimizing side-effects and harm. As registered nurses most often administer PCT, they are most likely to be confronted with difficult situations during PCT administration. This study explores challenging situations experienced by nurses when administering PCT to patients with incurable cancer.

    Methods: Registered nurses experienced in administering PCT were asked in interviews to recall PCT situations they found challenging. Inspired by the narrative tradition, stories were elicited and analysed using a structural and thematic narrative analysis.

    Results: A total of twenty-eight stories were narrated by seventeen nurses. Twenty of these were dilemmas that could be sorted into three storylines containing one to three dilemmatic situations each. The six dilemmatic situations broadly related to three interwoven areas: the uncertainty of the outcome when giving potent drugs to vulnerable patients; the difficulty of resisting giving PCT to patients who want it; and insufficient communication between nurses and physician.

    Conclusion: Nurses who administer PCT are engaged in a complex task that can give rise to a number of dilemmatic situations. The findings may be interpreted as meaning that at least some situations might be preventable if the knowledge and insight of all team members – nurses, physicians, patients, and relatives – are jointly communicated and taken into account when deciding whether or not to give PCT. Forming palliative care teams early in the PCT trajectory, could be beneficial for staff and patients.

  • 25.
    Rasmussen, Birgit Holritz
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Tishelman, Carol
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Experiences of living with a deteriorating body in late palliative phases of cancer2010Inngår i: Current opinion in supportive and palliative care, ISSN 1751-4266, Vol. 4, nr 3, s. 153-157Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    PURPOSE OF REVIEW: The trajectory of living with incurable cancer is characterized by increasing deterioration of the person's body. The aim of this review is to gain insight into the expert knowledge people have about their own lived experiences of bodily deterioration and symptoms in late palliative phases of cancer, and suggest a framework for understanding and studying these experiences. RECENT FINDINGS: When assessing the presence, severity and distress of symptoms and problems experienced by patients, it is important to carefully consider choice of instruments, which by nature, tend to target distinct problems, and expand assessment to include narrative approaches. Deterioration of the body and symptom distress can have dire consequences for the individuals, as these threaten the intactness of the person, may lead to desire to end one's life, can act as determinant of place of death, and dominate the sick person's existence. SUMMARY: Understanding the meaning bodily deterioration and symptoms have for patients is intrinsic for optimization of supportive interventions. We suggest that improved integration of knowledge from logical scientific and narrative approaches in research aiming to generate empirical and/or theoretical knowledge, and cross-fertilization of research from closely related areas can contribute to improving care for this vulnerable group of patients.

  • 26.
    Sallnow, Libby
    et al.
    St Joseph’s Hospice and University of Edinburgh, UK.
    Tishelman, Carol
    Karolinska University Hospital, Sweden.
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Karolinska University Hospital, Sweden.
    Richardson, Heather
    St Christopher’s Hospice, UK.
    Cohen, Joachim
    Brussel (VUB) & Ghent University, Belgium.
    Research in public health and end-of-life care: building on the past and developing the new2016Inngår i: Progress in Palliative Care, ISSN 0969-9260, E-ISSN 1743-291X, Vol. 24, nr 1, s. 25-30Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Introduction: Public health approaches offer the opportunity to move beyond clinical and health services approaches to end-of-life (EoL) care, to focus on whole populations, individuals and communities rather than patients and carers. They also allow concepts such as capacity, resilience, and wellbeing to come to the fore. Methods: This paper, drawing on the experience of a diverse group of academics and practitioners from three countries in Europe, considers the research challenges related to examining new public health approaches to EoL care and how learning from more traditional or classic public health research can influence a future research agenda. Additional opportunities provided by the new public health approach to broaden learning and participation in research are considered. Results: By bringing together strong traditional methods such as analysis of longitudinal population-level data with participatory approaches that draw on communities' experience and aspirations for care, the authors suggest that new and improved opportunities exist to evaluate the impact of participatory approaches. Discussion: In conclusion, the paper urges researchers from classic and new public health to work in partnership to generate and respond to the emerging research agenda around new public health initiatives. There is much to be learned from both.

  • 27. Tishelman, Carol
    et al.
    Eneslätt, Malin
    Menkin, Elizabeth
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Developing and using a structured, conversation-based intervention for clarifying values and preferences for end-of-life in the advance care planning-naive Swedish context: Action research within the the DoBra research program2019Inngår i: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Sweden has no systematic advance care planning (ACP), nor legal recognition of end-of-life proxies. We describe our experiences and reflections from a participatory action research process, aiming at developing and initially using a conversation-based, structured ACP approach among community-dwelling, older adults in Sweden. Eco-mapping and DoBra cards were used with 65 people to catalyze discussions on preferences for the end-of-life. We found great individual variation in both Eco-map depictions of social networks and prioritization of the 37 DoBra card items. The DoBra cards were concluded to be a viable tool for stimulating person-centered conversations on preferences for future end-of-life care.

  • 28. Tishelman, Carol
    et al.
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Going Public: Integrating Palliative Care, Health Promotion and Public Health in Sweden Through the DöBra Research Program2016Inngår i: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 52, nr 6, s. E19-E19Artikkel i tidsskrift (Fagfellevurdert)
  • 29. Tishelman, Carol
    et al.
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hajdarevic, Senada
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Dermatologi och venereologi.
    Rasmussen, Birgit H.
    Umeå universitet.
    Carlander, Ida
    Space and Place for End-of-Life Care: A Photo-Elicitation Study2014Inngår i: Journal of Palliative Care, ISSN 0825-8597, Vol. 30, nr 3, s. 220-220Artikkel i tidsskrift (Fagfellevurdert)
  • 30. Tishelman, Carol
    et al.
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Learning, Informatics, Management and Ethics, Medical Management Center, Karolinska Institutet, SE-171 77 Stockholm Sweden.
    Hajdarevic, Senada
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Rasmussen, Birgit H
    Goliath, Ida
    Beyond the visual and verbal: Using participant-produced photographs in research on the surroundings for care at the end-of-life.2016Inngår i: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 168, s. 120-129Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The web of relationships between wellbeing and the environments in which people live has long been recognized. However, relatively little research has been conducted about end-of-life surroundings from the perspective of the dying person. In this study, we investigate which aspects of their surroundings are particularly meaningful for the people inhabiting them in the last phases of life, based on participant-produced photographs with follow-up interviews. Twenty-three people were purposefully recruited via specialized in-patient palliative care/hospice units, specialized palliative care home care teams, and residential care facilities for the elderly. Participants were given a digital camera, and asked to take pictures of that which was meaningful for them in their surroundings. The interviewer later viewed the photographs with the participant, asking: "what is this picture of?" and "why is it meaningful to you?" The database consists of 76 photographs with follow-up interviews, which were analyzed qualitatively in an iterative process. These empirical data demonstrate how a sense of being valued, and of being able to maintain contacts with one's daily life and sense of identity appear supported or hindered by features of the care surroundings. These features include a positive aesthetic experience incorporating both sensory stimulation using one's body as well as general ambiance; support appropriate for maintaining a sense of functional independence; and connections with one's past, present and future as a person within a wider world. Corporeality appears crucial for understanding, negotiating and interacting in one's surroundings, while maintaining both physical and social function. This data collection approach was found to offer alternative forms of expression as verbal ability decreases and symptom burden increases, making it useful in end-of-life research and practice development.

  • 31. Westerlund, Caroline
    et al.
    Tishelman, Carol
    Benkel, Inger
    Fürst, Carl Johan
    Molander, Ulla
    Rasmussen, Birgit H
    Sauter, Sylvia
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Learning, Informatics, Management and Ethics/Division of Innovative Care, Karolinska Institutet, Stockholm, Sweden.
    Public awareness of palliative care in Sweden2018Inngår i: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 46, nr 4, s. 478-487Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    OBJECTIVE: The aim of this study was to investigate the awareness of palliative care (PC) in a general Swedish population.

    DESIGN: We developed an e-survey based on a similar study conducted in Northern Ireland, consisting of 10 questions. Closed questions were primarily analyzed using descriptive statistics. Open questions were subject to inductive qualitative analysis.

    SUBJECTS: The study utilized a population sample of 7684 persons aged 18-66, of which 2020 responded, stratified by gender, age and region.

    RESULTS: Most participants reported 'no' ( n = 827, 41%) or 'some' ( n = 863, 43%) awareness of PC. Being female or older were associated with higher levels of awareness, as was a university-level education, working in a healthcare setting and having a friend or family member receiving PC. Most common sources of knowledge were the media, close friends and relatives receiving PC, as well as working in a healthcare setting. Aims of PC were most frequently identified as 'care before death', 'pain relief', 'dignity' and a 'peaceful death'. The preferred place of care and death was one's own home. The main barriers to raising awareness about PC were fear, shame and taboo, along with perceived lack of information and/or personal relevance. The term 'palliative care' was said to be unfamiliar by many. A number of strategies to enhance awareness and access to PC were suggested, largely reflecting the previously identified barriers.

    CONCLUSIONS: This survey found limited awareness of palliative care in an adult sample of the Swedish general public ≤ 66 years, and points to a more widespread disempowerment surrounding end-of-life issues.

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