| 2. |
- Sawatzky, Richard, et al.
(författare)
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Design and introduction of a quality of life assessment and practice support system: perspectives from palliative care settings.
- 2018
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Ingår i: Journal of patient-reported outcomes. - : Springer Science and Business Media LLC. - 2509-8020. ; 2
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Tidskriftsartikel (refereegranskat)abstract
- Quality of life (QOL) assessment instruments, including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs), are increasingly promoted as a means of enabling clinicians to enhance person-centered care. However, integration of these instruments into palliative care clinical practice has been inconsistent. This study focused on the design of an electronic Quality of Life and Practice Support System (QPSS) prototype and its initial use in palliative inpatient and home care settings. Our objectives were to ascertain desired features of a QPSS prototype and the experiences of clinicians, patients, and family caregivers inregard tothe initial introduction of a QPSS in palliative care, interpreting them in context.We applied an integrated knowledge translation approach in two stages by engaging a total of 71 clinicians, 18 patients, and 17 family caregivers in palliative inpatient and home care settings. Data for Stage I were collected via 12 focus groups with clinicians to ascertain desirable features of a QPSS. Stage II involved 5 focus groups and 24 interviews with clinicians and 35 interviews with patients or family caregivers during initial implementation of a QPSS. The focus groups and interviews were recorded, transcribed, and analyzed using the qualitative methodology of interpretive description.Desirable features focused on hardware (lightweight, durable, and easy to disinfect), software (simple, user-friendly interface, multi-linguistic, integration with e-health systems), and choice of assessment instruments that would facilitate a holistic assessment. Although patient and family caregiver participants were predominantly enthusiastic, clinicians expressed a mixture of enthusiasm, receptivity, and concern regarding the use of a QPSS. The analyses revealed important contextual considerations, including: (a) logistical, technical, and aesthetic considerations regarding the QPSS as a technology, (b) diversity in knowledge, skills, and attitudes of clinicians, patients, and family caregivers regarding the integration of electronic QOL assessments in care, and (c) the need to understand organizational context and priorities in using QOL assessment data.The process of designing and integrating a QPSS in palliative care for patients with life-limiting conditions and their family caregivers is complex and requires extensive consultation with clinicians, administrators, patients, and family caregivers to inform successful implementation.
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| 3. |
- Öhlén, Joakim, 1958, et al.
(författare)
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Is it possible to integrate tensions in opposing views related to notions of individualization and generalization in palliative care?
- 2015
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Ingår i: International Philosophy Of Nursing Society (IPONS) Conference. August 24-26, Stockholm, Sweden..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- There are concurrent societal, demographic and epidemiological conflicting challenges related to palliative care. Trends in globalization have led to culturally diverse and pluralistic societies with a range of perspectives of death and dying, and different expectations for palliative care. In addition, people are living longer with life-limiting conditions. Although specialized palliative care is available, including in Sweden and Canada, most people who are dying from chronic life-limiting conditions do not receive specialized palliative care, but rather utilize other health services, such as chronic disease management, primary care, intensive care or emergency room services. Within the field of palliative care the aim of the project is to integrate person-centred perspectives with standardization and measurement (including standard care plans, evidence-based practice guidelines, and patient- and family-reported outcomes and experience measures). Specifically, this presentation will focus on the initial and tentative exploration of tensions related to notions of individualization as opposed to generalization in palliative care. For the initial exploration we applied different lenses and perspectives including equity, cross-cultural, global health, person-centeredness, measurement validation, and quality indicators. Then tentative tensions between apparently opposing views were identified. For the integration of different views of international relevance to palliative care, a hermeneutic approach that is dialectic and communicative (based on Paul Ricoeur’s hermeneutics) was applied. This perspective articulates possibilities to relate opposing views without neutralizing or diffusing their central features; thus a theoretical resource to not end up in a fixed or oversimplifying “model”. This analysis is on-going. As a Swedish-Canadian collaborative initiative, with senior and junior researchers and graduate students from both countries, we target conceptual issues influencing ways societies and professionals respond to pressing, global needs in relation to the care of people with chronic life-limiting conditions approaching end-of-life.
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