| 1. |
- Henoch, Ingela, 1956, et al.
(författare)
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Patients’, family members’ and healthcare staffs’ opinions about existential issues as a base for an educational intervention
- 2011
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Ingår i: BMJ Supportive & Palliative Care. - : BMJ. - 2045-4368 .- 2045-435X. ; 1:1
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Tidskriftsartikel (refereegranskat)abstract
- Objective To explore patients', family members' and healthcare staff's opinions about existential issues important to patients with cancer and their relatives. Methods Two integrative literature reviews were conducted about existential issues among cancer patients and relatives, and interventions to meet these issues. Four focus groups were conducted with healthcare staff working with cancer patients at different stages about patients' existential issues, and staff's responsibility when existential issues are raised. Results In the patient review, existential issues were divided into two themes: struggle to maintain self-identity and threats to self-identity. Relatives' existential issues concerned living both in and beyond the presence of death, with reminders of death, compelling them to respond to life close to death and seek support. Few interventions directed to patients or relatives applicable to everyday healthcare practice were found. Focus groups with staff revealed four categories of patients' existential issues, life and death, meaning, freedom of choice, relationships and solitude. According to staff, their responsibility concerned achieving an encounter with the patient. Conclusion Results from three studies are congruent in that, patients, relatives and staff agree, although in different ways, about the importance of existential issues to patients and relatives. Healthcare staff was aware of the importance of existential issues and are to some extent confident about how to act when these issues are raised by the patients. Ongoing studies The project group now continues implementing findings from these studies in an educational intervention to healthcare staff in different settings, and planning interventions to patients and relatives.
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| 2. |
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| 3. |
- Kennedy, Catriona, et al.
(författare)
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Diagnosing dying : an integrative literature review
- 2014
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Ingår i: BMJ Supportive & Palliative Care. - London : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368. ; 4:3, s. 263-270
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Tidskriftsartikel (refereegranskat)abstract
- Background To ensure patients and families receive appropriate end-of-life care pathways and guidelines aim to inform clinical decision making. Ensuring appropriate outcomes through the use of these decision aids is dependent on timely use. Diagnosing dying is a complex clinical decision, and most of the available practice checklists relate to cancer. There is a need to review evidence to establish diagnostic indicators that death is imminent on the basis of need rather than a cancer diagnosis.Aim To examine the evidence as to how patients are judged by clinicians as being in the final hours or days of life.Design Integrative literature review.Data sources Five electronic databases (2001–2011): Cochrane Central Register of Controlled Trials (CENTRAL) on The Cochrane Library, MEDLINE, EMBASE, PsycINFO and CINAHL. The search yielded a total of 576 hits, 331 titles and abstracts were screened, 42 papers were retrieved and reviewed and 23 articles were included.Results Analysis reveals an overarching theme of uncertainty in diagnosing dying and two subthemes: (1) ‘characteristics of dying’ involve dying trajectories that incorporate physical, social, spiritual and psychological decline towards death; (2) ‘treatment orientation’ where decision making related to diagnosing dying may remain focused towards biomedical interventions rather than systematic planning for end-of-life care.Conclusions The findings of this review support the explicit recognition of ‘uncertainty in diagnosing dying’ and the need to work with and within this concept. Clinical decision making needs to allow for recovery where that potential exists, but equally there is the need to avoid futile interventions.
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| 4. |
- Lind, Susanne, 1962-, et al.
(författare)
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Quality indicators for palliative and end of life care : a review of Swedish policy documents
- 2013
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Ingår i: BMJ Supportive & Palliative Care. - : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368. ; 3:2, s. 174-180
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Tidskriftsartikel (refereegranskat)abstract
- Background All patients with palliative and end of life care needs should be guaranteed equal and safe treatment and care, regardless of their disease or site of care. The inclusion of quality indicators in national guidelines and other guiding documents supports quality assurance and improvement in provision of care. The aim of this paper was to review existing quality indicators in national Swedish policy documents relevant to palliative and end of life care.Methods We reviewed existing guidelines for diseases expected to require palliative care issued by the National Board of Health and Welfare, existing regional clinical practice guidelines and the annual report of the Swedish Register of Palliative Care (SRPC) up until 2010.Results We found 11 quality indicators pertinent to palliative and end of life care in the guidelines for cancer diseases and ‘The care and nursing of the elderly’. The indicators included assessment and treatment of pain, communication with the patient and the family, documentation in the patient record and registration in the SRPC. In the national guidelines for cardiology, pulmonary diseases, stroke, diabetes and dementia, there were no indicators relevant for palliative or end of life care.Conclusions In the existing Swedish national guidelines for many different diseases, there is still a great need to define clinically relevant and feasible outcome measures of quality of palliative and end of life care.
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| 5. |
- Lind, Susanne, 1962-, et al.
(författare)
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Quality indicators for palliative and end of life care : a review of Swedish policy documents
- 2013
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Ingår i: BMJ Supportive & Palliative Care. - : BMJ. - 2045-435X .- 2045-4368. ; 3:2, s. 174-180
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: All patients with palliative and end of life care needs should be guaranteed equal and safe treatment and care, regardless of their disease or site of care. The inclusion of quality indicators in national guidelines and other guiding documents supports quality assurance and improvement in provision of care. The aim of this paper was to review existing quality indicators in national Swedish policy documents relevant to palliative and end of life care.METHODS: We reviewed existing guidelines for diseases expected to require palliative care issued by the National Board of Health and Welfare, existing regional clinical practice guidelines and the annual report of the Swedish Register of Palliative Care (SRPC) up until 2010.RESULTS: We found 11 quality indicators pertinent to palliative and end of life care in the guidelines for cancer diseases and 'The care and nursing of the elderly'. The indicators included assessment and treatment of pain, communication with the patient and the family, documentation in the patient record and registration in the SRPC. In the national guidelines for cardiology, pulmonary diseases, stroke, diabetes and dementia, there were no indicators relevant for palliative or end of life care.CONCLUSIONS: In the existing Swedish national guidelines for many different diseases, there is still a great need to define clinically relevant and feasible outcome measures of quality of palliative and end of life care.
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| 6. |
- Wallerstedt, Birgitta, et al.
(författare)
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Family members´caregiving situation in palliative home care when sitting service is received : the understanding of multiple realities
- 2014
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Ingår i: BMJ Supportive & Palliative Care. - : Cambridge University Press. - 2045-435X .- 2045-4368. ; 12:6, s. 425-437
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To deepen the understanding of the variation of complexity in family members' caregiving situations, when the private home is the place for care, dying, and sitting service.Methods: Seven relatives to a deceased family member from four different families were interviewed twice. Data were analyzed by direct interpretation and categorical aggregationResults: Various patterns of becoming a caregiver were showed, but family members' willingness to become family caregivers was strongly related to fulfilling the dying persons' wishes to be cared for in their own homes. Important factors for coping with the caregiving situation were their needs of support, the possibility to prepare for death related to a need of communication and planning, the length and predictability of the illness trajectory, and experiences of losses and grief. Sitting service was experienced as supportive for family caregivers when they had possibility to hand over care responsibilities, but as non-supportive when expected help not was received.Significance of the research: Family members' experiences of caregiving and their degree of vulnerability must be different, depending on whether it is a self-selected position or an imposed task. In general, family members in this study were willing to participate in caregiving for end-of life care, but subject to their own conditions. One way to decrease vulnerability is to assess the resources and competence in relation to the responsibility the person is expected to assume. The support and other efforts to help family caregivers must be related to their specific needs and reality, not only to what the care organization can offer as a standard solution.
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