Palliasjon og lindring – en begrepsbestemmelse ved bruk av etymologiske ordbøker og offentlige dokumenter

Tuhus, Ruth; Lorentsen, Vibeke Bruun; Winger, Anette; Steindal, Simen Alexander

doi:10.18261/issn.2387-5984-2021-03-04

Cited by 3 publications

(1 citation statement)

References 31 publications

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“…Applequist and Daly [ 20 ] found that the concepts of palliation and PC have several similarities, but while PC involves provision of physical, emotional, psychological and social care, palliation is a patient-centred outcome, such as symptom relief by means of a noncurative intervention and human presence. One study found that palliation and alleviation are not synonymous concepts but that they are complementary [ 23 ]. HCPs describe the term PC as a blurred and confusing concept that is associated with end-of-life care [ 24 ].…”

Section: Introductionmentioning

confidence: 99%

Making room for life and death at the same time – a qualitative study of health and social care professionals’ understanding and use of the concept of paediatric palliative care

et al. 2022

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Background The concept of pediatric palliative care (PPC) is applied differently within the healthcare system and among healthcare professionals (HCPs). To our knowledge, no studies have investigated how multidisciplinary HCPs understand the concept of PPC and the aim of this study was to explore the concept of PPC from the view of HCP in a paediatric setting. Methods We employed an explorative and descriptive design and conducted four focus groups with a total of 21 HCPs working in hospitals with children in palliative care. The data were analysed using qualitative content analysis. Results The data analysis of the concept of pediatric palliative care resulted in two themes. The first theme “A frightening concept that evokes negative emotions,” contains categories to explore the meaning, named “An unfamiliar and not meaningful concept, “A concept still associated with death and dying” and “Healthcare professionals’ responsibility for introducing and using the concept and, to obtain a common meaning.” The second theme was named “A broad and complementary concept,” containing the categories “Total care for the child and the family,” “Making room for life and death at the same time” and “The meaning of alleviation and palliative care.” Conclusions The included HCPs reflected differently around PPC but most of them highlighted quality of life, total care for the child and the child’s family and interdisciplinary collaboration as core elements. Attention to and knowledge among HCPs might change the perception about PPC from a frightening concept to one that is accepted by all parties, implemented in practice and used as intended. However, our study reveals that there is still some work to do before PPC is understood and accepted by all those involved.

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Section: Introductionmentioning

confidence: 99%

Making room for life and death at the same time – a qualitative study of health and social care professionals’ understanding and use of the concept of paediatric palliative care

et al. 2022

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Palliative care in Norwegian nursing education: A document analysis of the integration of learning outcomes

Valen

Jensen

Holm

et al. 2022

Nordic Journal of Nursing Research

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Large variations in palliative care education across and within countries are reported. Nursing students report that they feel unprepared for palliative care. The present study identified and outlined whether universities integrated learning outcomes on palliative care as described in the national regulation into programme descriptions and course plans after implementation of the National Curriculum Regulations for Norwegian Health and Welfare Education (RHETOS) in the 2020 academic year. A qualitative descriptive design with a document analysis approach was used. The findings revealed variation in the terminology used. Palliative care was differently emphasized in selected learning outcome descriptors, related subjects, and presence in the academic trajectory. It is crucial to emphasize palliative care in nursing education to prepare the future workforce to meet patients’ and their families’ individual needs in a multidisciplinary environment across service levels.

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Patient-reported outcome measures in children, adolescents, and young adults with palliative care needs—a scoping review

Holmen,

Winger,

Steindal

et al. 2023

BMC Palliat Care

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Background Measuring outcomes facilitates evaluation of palliative services for children, adolescents, and young adults (CAYAs) with life-limiting and/or life-threatening (LL/LT) conditions. Implementation of patient-reported, proxy-reported, or patient-centered outcome measures (hereafter PROMs) is recommended to ensure palliative services. The purpose of this scoping review was to provide an overview of PROMs relevant for CAYAs living with LL/LT conditions eligible for pediatric palliative care (PPC). Methods Arksey and O’Malley’s 6-stage scoping review framework was used to guide the review. The identified citations had to report on PROMs in any context including CAYAs with LL/LT conditions up to 25 years of age. A systematic search of Medline, EMBASE, CINAHL, APA PsycInfo, Health and Psychosocial Instruments, and AMED took place in January 2021 and was updated in June 2022. Citations were screened independently by pairs of researchers. The scoping review protocol was registered, and peer-review published. Results Of 3690 identified citations, 98 reports were included, of which the majority were from Western countries and about PROMs in CAYAs living with cancer or organ failure. A total of 80 PROMs were identified, assessing a range of phenomena, where quality of life and symptoms (especially pain) during the stage of ongoing care were the most frequent. There were only a few reports about outcome measures at time of diagnosis or in end-of-life care. CAYAs self-reported on the PROMs or collaborated with their parents in about half of the reports, while the remaining had proxies answering on behalf of the CAYAs. In the identified reports, PROMs were used to characterize a sample through cross-sectional or longitudinal research, and less often to assess effects of interventions. Conclusion The identified PROMs in the CAYA population eligible for PPC is characterized by studies in high-income countries during ongoing care, primarily in patients with cancer or organ failure. More research is needed in patients living with other LL/LT conditions, and during different stages of the disease course, especially at time of diagnosis, during transition to adulthood, and in end-of-life care. This scoping review of PROMs relevant for young patients eligible for PPC may inform future research about patient-/proxy-reported or patient-centered outcome measures in PPC. Trial registration Review registration: (https://osf.io/yfch2/) and published protocol (Holmen et al. Syst Rev. 10:237, 2021).

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Palliasjon og lindring – en begrepsbestemmelse ved bruk av etymologiske ordbøker og offentlige dokumenter

Cited by 3 publications

References 31 publications

Making room for life and death at the same time – a qualitative study of health and social care professionals’ understanding and use of the concept of paediatric palliative care

Making room for life and death at the same time – a qualitative study of health and social care professionals’ understanding and use of the concept of paediatric palliative care

Palliative care in Norwegian nursing education: A document analysis of the integration of learning outcomes

Patient-reported outcome measures in children, adolescents, and young adults with palliative care needs—a scoping review

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