| 1. |
- Holmen, Heidi, et al.
(författare)
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Patient-reported outcome measures in children, adolescents, and young adults with palliative care needs—a scoping review
- 2023
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Ingår i: BMC Palliative Care. - 1472-684X. ; 22:1
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 2. |
- Holmen, Heidi, et al.
(författare)
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Patient-reported outcome measures in pediatric palliative care—a protocol for a scoping review
- 2021
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Ingår i: Systematic Reviews. - : Springer Science and Business Media LLC. - 2046-4053. ; 10:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: In pediatric palliative care (PPC), there is a need to involve the child’s voice in situations regarding their symptoms and care needs. Patient-reported outcome measures (PROMs) can be tools to systematically gather data reported from the child or a proxy if the child is not capable to self-report in order to provide the services they need. There has been a rapid development in PROM research the last decade, and there is a need for an overview of current knowledge and experiences in the field. Thus, we aim to explore and summarize what is known from the published research about PROMs in PPC. Methods: We propose a scoping review following the framework by Arksey and O’Malley and the PRISMA Extension for Scoping Reviews checklist. A systematic search will be performed in the following databases: Medical Literature Analysis and Retrieval System Online (Medline), Excerpta Medica database (EMBASE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), American Psychological Association (APA) PsycInfo, Health and Psychosocial Instruments (HaPI), and Allied and Complementary Medicine Database (AMED). The search will be followed by snowballing to identify key papers and significant researchers for additional citations. Covidence will facilitate the independent review of eligible citations, and data will be extracted and presented descriptively, and thematically analyzed using NVivo. Discussion: The scoping review suggested in this protocol will identify PROMs which have been proposed in PPC and clarify the experiences with their use. The findings of this review will be relevant for researchers and healthcare personnel caring for children and adolescents in PPC. In addition, by highlighting knowledge gaps about the use of PROMs in PPC, this review will point out future needs within this field of research, which is crucial for improving quality of care in PPC. Systematic review registration: https://osf.io/yfch2/.
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| 3. |
- Holmen, Heidi, et al.
(författare)
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Unpacking the Public Health Triad of Social Inequality in Health, Health Literacy, and Quality of Life-A Scoping Review of Research Characteristics
- 2023
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Ingår i: International Journal of Environmental Research and Public Health. - : Journal Issues. - 1661-7827 .- 1660-4601. ; 21:1
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Forskningsöversikt (refereegranskat)abstract
- Social inequalities in health, health literacy, and quality of life serve as distinct public health indicators, but it remains unclear how and to what extent they are applied and combined in the literature. Thus, the characteristics of the research have yet to be established, and we aim to identify and describe the characteristics of research that intersects social inequality in health, health literacy, and quality of life. We conducted a scoping review with systematic searches in ten databases. Studies applying any design in any population were eligible if social inequality in health, health literacy, and quality of life were combined. Citations were independently screened using Covidence. The search yielded 4111 citations, with 73 eligible reports. The reviewed research was mostly quantitative and aimed at patient populations in a community setting, with a scarcity of reports specifically defining and assessing social inequality in health, health literacy, and quality of life, and with only 2/73 citations providing a definition for all three. The published research combining social inequality in health, health literacy, and quality of life is heterogeneous regarding research designs, populations, contexts, and geography, where social inequality appears as a contextualizing variable.
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| 4. |
- Riiser, Kirsti, et al.
(författare)
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Stories of paediatric palliative care : a qualitative study exploring health care professionals’ understanding of the concept
- 2022
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Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: By sharing patient stories, health care professionals (HCPs) may communicate their attitudes, values and beliefs about caring and treatment. Previous qualitative research has shown that HCPs usually associate paediatric palliative care (PPC) with death or dying and that they find the concept challenging to understand and difficult to implement. Attending to HCPs’ stories may provide a richer account of their understanding of PPC. Thus, the aim of this study was to explore PPC stories narrated by HCPs to gain increased insight into their understanding of what PPC entails. Methods: This qualitative study collected data from four focus group interviews with 21 HCPs from different units in two Norwegian hospitals. Stories told by the HCPs to illustrate their comprehension of PPC were analysed following thematic analysis procedures. Results: Four themes were identified illustrating what PPC meant to the participants: creating spaces for normality, providing tailored support for the family, careful preparations for saying goodbye and experiencing dilemmas and distress. The stories centred on family care, particularly relating to dramatic or affective situations when the death of a child was imminent. Conclusion: The stories reflect how the HCPs view PPC as a specific field of health care that requires particular professional sensitivity, including good communication, collaboration and planning. Thus, the HCPs in this study demonstrated knowledge about the core qualities needed to succeed in PPC. However, similar to previous research, the stories illustrate that how HCPs speak about PPC is strongly associated with end-of-life care, and by that the HCPs do not capture the breadth of the PPC concept. The findings highlight the importance of increasing knowledge about the meaning and content of PPC among HCPs in order to maintain quality of life for all children with life-limiting or life-threatening conditions throughout their illness trajectory.
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