Generating key practice points that enable optimal palliative care in acute hospitals: Results from the OPAL project's mid-point meta-inference

Virdun, Claudia; Luckett, Tim; Davidson, Patricia M.; Lorenz, Karl; Phillips, Jane

doi:10.1016/j.ijnsa.2021.100035

Cited by 9 publications

(25 citation statements)

References 37 publications

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“…Understanding the specific needs of families in addition to patients was identified as necessary given the unique requirements for people living with palliative care needs. This study confirms the need for tailored tools that appraise issues of importance for people living with advanced serious illness, [26][27][28] given these areas of importance have a profound impact on patient experience. The use of generic PREMs risks losing the focus on what matters most for this population.…”

Section: Discussionsupporting

confidence: 76%

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Perspectives of inpatients with palliative care needs, their families, clinicians and key stakeholders on measuring quality of hospital care via patient experience measures: A qualitative study

Virdun,

Button,

Phillips

et al. 2023

Palliat Med

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Background: Globally there are high numbers of patients with palliative care needs receiving care in hospitals. Patient reported experience measures (PREMs) provide useful data to guide improvement work. How to implement PREMs within palliative care populations is unclear. Aim: To explore the perspectives of inpatients with palliative care needs, their family members, and the clinical team regarding the use of a generic PREM as compared with a PREM designed for people with palliative care needs and related implementation factors. Design: A qualitative study was undertaken using semi-structured interviews and focus groups and integrated thematic analysis. Setting/participants: Inpatients with palliative care needs, their family members, and clinical team members were recruited from three wards in an Australian metropolitan hospital. Results: Twenty-seven interviews and three focus groups were conducted. Six themes emerged: (1) PREMs for people with palliative care needs ought to be tailored to the needs of this population; (2) PREMs should appraise whether the needs of families have been met in addition to those of patients; (3) PREMs for inpatients with palliative care needs ought to be easy to use, brief and incorporate space for free text alongside each question; (4) Implementation of PREMs for people with palliative care needs ought to consider who administers these, when and how often; (5) PREM data need to be specific enough to inform process change and/or care provision; (6) Patients and families require meaningful feedback to encourage PREM completion. Conclusions: This study provides practical guidance for PREM selection and implementation to inform improvements to care for inpatients with palliative care needs.

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Section: Discussionsupporting

confidence: 76%

“…This study confirms the need for tailored tools that appraise issues of importance for people living with advanced serious illness, 26 –28 given these areas of importance have a profound impact on patient experience. The use of generic PREMs risks losing the focus on what matters most for this population.…”

Section: Discussionsupporting

confidence: 76%

Perspectives of inpatients with palliative care needs, their families, clinicians and key stakeholders on measuring quality of hospital care via patient experience measures: A qualitative study

Virdun,

Button,

Phillips

et al. 2023

Palliat Med

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“… Explore experience living with palliative care needs in acute care settings and improve systems/mixed sequential dominant design (systematic review, qualitative interviews, co‐design workshop) 138 , 139 , 140 , 141 Exploring preferences for engagement with service improvement in hospitals/qualitative interviews 142 …”

Section: Resultsmentioning

confidence: 99%

Participatory research with carers: A systematic review and narrative synthesis

Bowness,

Henderson,

Akhter Khan

et al. 2023

Health Expectations

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IntroductionAs patient and public involvement (PPI) in research has become increasingly common, research‐based recommendations on its principles and impacts have been established. The specifics of conducting PPI are likely to differ when involving different groups. Family/informal carers for those with health conditions or disabilities have a lot to contribute to research, but instances of their involvement have yet to be reviewed.ObjectiveTo systematically review and synthesize studies where family/informal carers have been involved in the research process, to develop an understanding of the benefits, barriers and facilitating factors.MethodsA search of five electronic databases was conducted using a combination of terms relating to carers, involvement and research. A grey literature search, expert consultation and hand‐searching were also used. Following screening, data extraction and quality assessment, a narrative synthesis incorporating thematic analysis was conducted.FindingsA total of 55 studies met the inclusion criteria, with diverse design and participatory approaches. Four themes were identified, relating to the outcomes, challenges, and practicalities of involving carers: (re) building relationships with carers; carers as equals not afterthoughts; carers have unique experiences; carers create change. Full involvement throughout the research was not always possible, due to barriers from the research world and responsibilities of the caring role. The literature demonstrated ways for carers to contribute in ways that suited them, maximizing their impact, while attending to relationships and power imbalances.ConclusionBy summarizing the reported instances of carer involvement in research, this review brings together different examples of how successful research partnerships can be built with carers, despite various challenges. Carers are a heterogeneous group, and participatory approaches should be tailored to specific situations. Wider understanding of the challenges of conducting empowering research with carers, and the resources required to address these, are needed.Patient and Public InvolvementThe initial findings and themes were presented to a group of carers who had been involved in research and whose reflections informed the final synthesis.

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“…In taking this work forward, it is important that PREMs align to what matters from a patient and family perspective, especially if these measures are to be used to improve care outcomes. 25,[27][28][29] Finding the right balance between domains of importance and brevity is an additional important consideration for unwell patients with palliative care needs. 46 The PREMs identified by this review ranged from two questions through to 85, with an average of 30 questions across all PREMs.…”

Section: Discussionmentioning

confidence: 99%

“…5,15,[20][21][22] Sustained improvements in palliative care delivery within acute hospitals are challenging given the dominance of the biomedical model and its focus on cure, 19,22,23 leading clinicians to provide a very problem-solution oriented approach to care rather than a proactive palliative approach. 15,24 A recent study focused on characterising the domains of care that are most important to hospitalised patients with palliative care needs, and their families 25 and the key drivers for enabling improvement in hospital palliative care delivery. 26 In order to understand what hospitalised patients and families value for high-quality palliative care, patient and family perspectives were sought from international literature via a systematic review 27 and metasynthesis.…”

Section: Introductionmentioning

confidence: 99%

Description of patient reported experience measures (PREMs) for hospitalised patients with palliative care needs and their families, and how these map to noted areas of importance for quality care: A systematic review

et al. 2023

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Background: The global need for focused improvements in palliative care within the acute hospital setting is well noted. A large volume of evidence exists detailing what hospitalised patients with palliative care needs and their families note as important for high quality care. Patient Reported Experience Measures (PREMs) are one mechanism that hospitals could use to inform improvement work. To date there has not been a review of PREMs available for hospitalised patients with palliative care needs and/or their family, nor how they align with noted priorities for high quality care. Aim: To identify and describe PREMs designed for hospitalised patients with palliative care needs and their families; and their alignment with patient and family identified domains for high quality care. Design: A systematic review. Data sources: A systematic search of CINAHL, Medline and PsycInfo was conducted up to September 23, 2022 and supplemented by handsearching article reference lists and internet searches. PREMs written in English and designed for patients with palliative care needs in acute hospitals were eligible for inclusion. Included PREMs were described by: summarising key characteristics; and mapping their items to domains noted to be important to hospitalised patients with palliative care needs and their families informed by outcomes from a published study completed in 2021. Evidence for psychometric properties were reviewed. Results: Forty-four PREMs with 827 items were included. Items per PREM varied from 2 to 85 (median 25, IQR 13–42). Two-thirds ( n = 534, 65%) of the items were designed for families and a third ( n = 283, 34%) for hospitalised patients, and very few ( n = 10, 1%) for both. Sixty-six percent of items measured person-centred care, 30% expert care and 4% environmental aspects of care. Available PREMs address between 1 and 11 of the 14 domains of importance for quality palliative care. PREMs had a median of 38% (IQR 25.4–56.3) of items >Grade 8 measured by the Flesch-Kincaid readability test, with Grade 8 or lower recommended to ensure health information is as accessible as possible across the population. Conclusions: Whilst 44 PREMs are available for hospitalised patients with palliative care needs or their families, a varied number of items are available for some domains of care provision that are important, compared to others. Few are suitable for people with lower levels of literacy or limited cognitive capacity due to illness.

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Generating key practice points that enable optimal palliative care in acute hospitals: Results from the OPAL project's mid-point meta-inference

Cited by 9 publications

References 37 publications

Perspectives of inpatients with palliative care needs, their families, clinicians and key stakeholders on measuring quality of hospital care via patient experience measures: A qualitative study

Perspectives of inpatients with palliative care needs, their families, clinicians and key stakeholders on measuring quality of hospital care via patient experience measures: A qualitative study

Participatory research with carers: A systematic review and narrative synthesis

Description of patient reported experience measures (PREMs) for hospitalised patients with palliative care needs and their families, and how these map to noted areas of importance for quality care: A systematic review

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