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  • 1.
    Henoch, Ingela
    et al.
    Gothenburg University.
    Lovgren, Malin
    Dalarna University.
    Wilde-Larsson, Bodil
    Karlstad University, Faculty of Health, Science and Technology (starting 2013), Department of Health Sciences.
    Tishelman, Carol
    Karolinska institutet, Sweden.
    Perception of quality of care: Comparison of the views of patients' with lung cancer and their family members2012In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 21, no 3-4, p. 585-594Article in journal (Refereed)
    Abstract [en]

    Aims and objectives. To explore potential differences within dyads of patients with lung cancer and family members judgment of different aspects of quality of care and relationships between quality of care and personal and health-related characteristics. Background. High quality of care is important for acceptable quality of life in patients in palliative care. If patients are unable to participate in quality of care assessments or decision-making, family members might often act as proxies, despite the complicated nature of their own situation. Design. Cross-sectional survey design. Method. A patient and family member version of the abbreviated questionnaire Quality from Patients' Perspective, with additional items about perceived health and opinions about care, was mailed to members of the Swedish lung cancer Patient Organisation. Wilcoxon's signed rank test was used to identify potential differences within 51 patient-family member dyads' quality of care ratings. Relationships between Quality from Patients' Perspective dimensions and demographic and healthrelated variables were examined with Spearman's correlations. Results. Patient-family member dyads had high levels of agreement in ratings of perceived reality of quality of care. Family members generally rated the subjective importance of individual items higher than did the patient in the dyad, with significant difference in the dimension ` socio-cultural approach'. Older patients were found to rate the physical-technical conditions higher than younger patients, in relation to perceived reality but not subjective importance. Women family members were found to rate the subjective importance of medical-technical competence, identity-oriented approach and socio-cultural approach significantly higher than men did. Conclusions. Patients with lung cancer and their family members agree in ratings of the perceived reality, but they differ more in ratings of the subjective importance of quality of care. When patients are unable to communicate their preferences, family members' opinions could be used as proxies concerning concrete aspects of quality of care. Concerning more subjective aspects, family members' ratings should be interpreted with precaution, as it could diverge from patients' own opinion. Relevance to clinical practice. The perceptions of the importance of different aspects of quality of care were less related to health status than were judgments of quality of care received. This might suggest that the care patients received fulfilled neither the patients' nor family members' expectations, which is an important message to healthcare professionals and which would demand further exploration.

  • 2.
    Kroik, Lena
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Linqvist, Olav
    Stoor, Krister
    Umeå University, Faculty of Arts, Várdduo – Centre for Sámi Research. Umeå University, Faculty of Arts, Department of language studies.
    Tishelman, Carol
    Karolinska institutet.
    The past is present: Death systems among the Indigenous Sámi in Northern Scandinavia today2020In: Mortality, ISSN 1357-6275, E-ISSN 1469-9885Article in journal (Refereed)
    Abstract [en]

    Despite growing interest in Indigenous health, the lack of end-of-life (EOL) research about the Sámi people led us to explore experience-based knowledge about EoL issues among the Sámi. We aim here to describe Sámi death systems and the extent to which Kastenbaum’s conceptualisation of death systems is appropriate to Sámi culture. Transcribed conversational interviews with 15 individuals, chosen for their varied experiences with EoL issues among Sámi, were first inductively analysed. Kastenbaum’s model of death systems, with functions along a time trajectory from prevention to social consolidation after death, and the components of people, times, places, and symbols/objects, was applied thereafter in an effort to understand the data. The model provides a framework for understanding aspects of the death system that were Sámi-specific, Sámi-relevant as well as what has changed over time. Whereas Kastenbaum differentiated among the components of the death system, our analysis indicated these were often so interrelated as to be nearly inseparable among the Sámi. Seasonal changes and relationships to nature instead of calendar time dominated death systems, linking people, places and times. The extended family’s role in enculturation across generations and EoL support was salient. Numerous markers of Sámi culture, both death-specific and those recruited into the death system, strengthened community identity in the EoL. 

  • 3. Tishelman, Carol
    et al.
    Eneslätt, Malin
    Menkin, Elizabeth
    Lindqvist, Olav
    Umeå University, Faculty of Medicine, Department of Nursing.
    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 program2019In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683Article in journal (Refereed)
    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.

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