Consumer and carer leadership in palliative care academia and practice: A systematic review with narrative synthesis

2019 ◽  
Vol 33 (8) ◽  
pp. 959-968 ◽  
Author(s):  
Brett Scholz ◽  
Alan Bevan ◽  
Ekavi Georgousopoulou ◽  
Aileen Collier ◽  
Imogen Mitchell
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Palliative Care ◽  
Service Planning ◽  
Data Sources ◽  
Health Policies ◽  
Narrative Synthesis ◽  
Inclusion Criteria ◽  
Systemic Decision Making ◽  
Synthesis Approach

Background: Contemporary health policies call for consumers to be part of all aspects of service planning, implementation, delivery and evaluation. The extent to which consumers are part of the systemic decision-making levels of palliative care appears to vary between and within services and organisations. Aim: The aim of this systematic review is to develop understandings about consumer and carer leadership in palliative care. Design: A systematic, narrative synthesis approach was adopted due to the heterogeneity of included studies. The review was registered on PROSPERO prospectively (PROSPERO 2018 CRD42018111625). Data sources: PubMed, Scopus and PsycINFO were searched for all studies published in English specifically focusing on consumers’ leadership in palliative care organisations and systems. Articles were appraised for quality using a modified JBI-QARI tool. Results: Eleven studies met the inclusion criteria and quality assessment. Consumers are currently involved in leadership of palliative care teaching, research and services. Findings highlight the benefits of consumer leadership in palliative care including more relevant, higher-quality services, teaching and research. Across the included studies, it was not clear the extent to which consumer leaders had influence in relation to setting agendas across the palliative care sector. Conclusion: The findings suggest that more could be done to support consumer leadership within palliative care. Academics and clinicians might improve the relevance of their work if they are able to more meaningfully partner with consumers in systemic roles in palliative care.

scholarly journals Communication and support from health-care professionals to families, with dependent children, following the diagnosis of parental life-limiting illness: A systematic review

2016 ◽  
Vol 31 (3) ◽  
pp. 212-222 ◽  
Author(s):  
Rachel Fearnley ◽  
Jason W. Boland
Keyword(s):  
Systematic Review ◽  
Health Care ◽  
Literature Review ◽  
Emotional Support ◽  
Health Care Professionals ◽  
Data Sources ◽  
Narrative Synthesis ◽  
Inclusion Criteria ◽  
Dependent Children ◽  
Insufficient Time

Background: Communication between parents and their children about parental life-limiting illness is stressful. Parents want support from health-care professionals; however, the extent of this support is not known. Awareness of family’s needs would help ensure appropriate support. Aim: To find the current literature exploring (1) how parents with a life-limiting illness, who have dependent children, perceive health-care professionals’ communication with them about the illness, diagnosis and treatments, including how social, practical and emotional support is offered to them and (2) how this contributes to the parents’ feelings of supporting their children. Design: A systematic literature review and narrative synthesis. Data sources: Embase, MEDLINE, PsycINFO, CINAHL and ASSIA ProQuest were searched in November 2015 for studies assessing communication between health-care professionals and parents about how to talk with their children about the parent’s illness. Results: There were 1342 records identified, five qualitative studies met the inclusion criteria (55 ill parents, 11 spouses/carers, 26 children and 16 health-care professionals). Parents wanted information from health-care professionals about how to talk to their children about the illness; this was not routinely offered. Children also want to talk with a health-care professional about their parents’ illness. Health-care professionals are concerned that conversations with parents and their children will be too difficult and time-consuming. Conclusion: Parents with a life-limiting illness want support from their health-care professionals about how to communicate with their children about the illness. Their children look to health-care professionals for information about their parent’s illness. Health-care professionals, have an important role but appear reluctant to address these concerns because of fears of insufficient time and expertise.

Supporting the Decision Making of Children With Cancer: A Meta-synthesis

2020 ◽  
Vol 37 (6) ◽  
pp. 431-443
Author(s):  
Noyuri Yamaji ◽  
Maiko Suto ◽  
Yo Takemoto ◽  
Daichi Suzuki ◽  
Katharina da Silva Lopes ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Palliative Care ◽  
Health Care Professionals ◽  
Data Sources ◽  
Future Research ◽  
Decision Making Process ◽  
Inclusion Criteria ◽  
Children With Cancer ◽  
Prisma Statement

Background: Recently, awareness of children’s decision making has increased in an effort to enhance palliative care. However, the conceptual framework for decision making among children with cancer remains unclear. Aims: We clarified the decision-making process of children with cancer regarding their care, treatment, and support from family and health care professionals, and identified their needs and preferences. Design: We used metaethnography to conduct a metasynthesis of relevant studies. Data sources: We searched PubMed, EMBASE, PsycINFO, MEDLINE, and CINAHL. This report was prepared in accordance with the PRISMA statement. Results: Of the 7,237 retrieved studies, 27 met our inclusion criteria. Four themes emerged that reflected the decision-making process of children with cancer: (a) facing changes brought about by a health threat, (b) preparing for action, (c) asserting one’s choice, and (d) internal and external influences. Conclusion: Children with cancer initially undergo a decision-making process. Respecting children’s preferences, values, and emotions may help build trusting relationships and promote their decision-making capability. Future research should focus on children’s emotions, cognition, development, and interactions with parents and health care professionals.

scholarly journals Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis

2021 ◽  
pp. 026921632199996
Author(s):  
Rachel McCauley ◽  
Regina McQuillan ◽  
Karen Ryan ◽  
Geraldine Foley
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Family Caregivers ◽  
Data Sources ◽  
Narrative Synthesis ◽  
Mutual Support ◽  
Support Provision ◽  
Changing Roles ◽  
Distress Disclosure ◽  
Full Text Screening

Background: Patients in palliative care are usually conceptualised as recipients of support from family caregivers. Family caregivers in palliative care are typically defined as providers of support to patients. Little is known about reciprocal dimensions of support provision between patients and family caregivers in palliative care. Aim: To identify processes of mutual support between patients and family caregivers in palliative care and factors that contribute to or obstruct mutual support between patients and family caregivers in palliative care. Design: Systematic review and narrative synthesis of original peer-reviewed research published between January 2000 and March 2020. Data sources: Medline, CINAHL, Embase, AMED, PsycINFO and PsycARTICLES. Results: After full-text screening, 10 studies were included. We identified that patients and family caregivers in palliative care can support one another by mutually acknowledging the challenges they face, by remaining positive for one another and by jointly adapting to their changing roles. However, patients and family caregivers may not routinely communicate their distress to each other or reciprocate in distress disclosure. A lack of mutual disclosure pertaining to distress can result in conflict between patients and family caregivers. Conclusions: Few studies have focused in whole or in part, on reciprocal dimensions of support provision between patients with advancing non-curable conditions, and their family caregivers in palliative care. Further research is required to identify key domains of mutual support between patients and family caregivers in palliative care.

scholarly journals Pharmacological strategies used to manage symptoms of patients dying of COVID-19: A rapid systematic review

2021 ◽  
pp. 026921632110132
Author(s):  
Laura Heath ◽  
Matthew Carey ◽  
Aoife C Lowney ◽  
Eli Harriss ◽  
Mary Miller
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Holistic Approach ◽  
Narrative Synthesis ◽  
Inclusion Criteria ◽  
Pharmacological Interventions ◽  
Pharmacological Management ◽  
Subcutaneous Infusion ◽  
Advanced Search ◽  
Continuous Subcutaneous Infusion

Background: COVID-19 has tragically resulted in over 2.5 million deaths globally. Despite this, there is a lack of research on how to care for patients dying of COVID-19, specifically pharmacological management of symptoms. Aim: The aim was to determine the dose ranges of pharmacological interventions commonly used to manage symptoms in adult patients dying of COVID-19, establish how effectiveness of these interventions was measured, and whether the pharmacological interventions were effective. Design: This was a rapid systematic review with narrative synthesis of evidence, prospectively registered on PROSPERO (ID: CRD42020210892). Data sources: We searched MEDLINE, EMBASE, CINAHL via the NICE Evidence Health Databases Advanced Search interface; medRxiv; the Cochrane COVID-19 Study Register; and Google Scholar with no date limits. We included primary studies which documented care of patients dying of COVID-19 under the care of a specialist palliative care team. Results: Seven studies, documenting the care of 493 patients met the inclusion criteria. Approximately two thirds of patients required a continuous subcutaneous infusion with median doses of 15 mg morphine and 10 mg midazolam in the last 24 h of life. Four studies described effectiveness by retrospective review of documentation. One study detailed the effectiveness of individual medications. Conclusions: A higher proportion of patients required continuous subcutaneous infusion than is typically encountered in palliative care. Doses of medications required to manage symptoms were generally modest. There was no evidence of a standardised yet holistic approach to measure effectiveness of these medications and this needs to be urgently addressed.

scholarly journals How different administrative databases change the size of a potential palliative care population

2017 ◽  
Vol 1 (1) ◽  
Author(s):  
Kate Brameld ◽  
Katrina Spilsbury ◽  
Lorna Rosenwax ◽  
Kevin Murray ◽  
James Semmens
Keyword(s):  
Palliative Care ◽  
Death Certificate ◽  
Hospital Admissions ◽  
Service Planning ◽  
Data Sources ◽  
Administrative Databases ◽  
Mortality Data ◽  
Inclusion Criteria ◽  
Sex Distribution ◽  
The Individual

ABSTRACTObjectivesTo evaluate how the size and characteristics of potential palliative care populations vary depending on which administrative data sources are used to identify them and how inclusion criteria are applied.ApproachPopulation-based studies in palliative care have used a range of administrative databases including death certificate data and linked hospital admissions data to identify people who received or could have benefited from palliative care. We conducted a retrospective cohort study using linked hospital admissions and mortality data from the Western Australian Data Linkage System to evaluate how the size and distribution of the potential palliative care populations varied according to the data sources, whether linked data were used and how inclusion criteria were applied. Our cohort consisted of 23,852 people aged 20 years and over who died in Western Australia between 1 January 2009 and 31 December 2010 after excluding those whose deaths related to pregnancy or trauma. Within this cohort, the number, proportion and characteristics of people who died from one or more of 10 medical conditions considered amenable to palliative care were identified using different information sources.ResultsOf the 23,852 people who died, a total of 10,445 (43%) people had a condition potentially amenable to palliative care recorded as the underlying cause of death on their death certificate. This increased to 15,064 (63%) people when including one of these conditions listed anywhere on their death certificate. When hospital admission records from the last year of life and death records were used to identify people who might potentially have benefited from palliative care, there were 17,384 (73%) people identified with at least one of these conditions. The median age at death varied by up to 12 years between data sources depending on condition. The sex distribution of the decedents, which was measured in terms of the proportion of males dying from the condition, showed variations of up to 30% depending on the data source.ConclusionsThe use of different data sources to identify conditions that might benefit from palliative care will result in differing frequency of conditions and age and sex distribution of the population. This is a result of many people having multiple conditions and the method in which these are recorded in different data sources. It is important to be aware of the characteristics of the individual data sources when the data are used for health service planning.

Do patients, families, and healthcare teams benefit from the integration of palliative care in burn intensive care units? Results from a systematic review with narrative synthesis

2019 ◽  
Vol 33 (10) ◽  
pp. 1241-1254 ◽  
Author(s):  
André Filipe Ribeiro ◽  
Sandra Martins Pereira ◽  
Barbara Gomes ◽  
Rui Nunes
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Palliative Care ◽  
Intensive Care ◽  
Intensive Care Units ◽  
Family Care ◽  
Multidisciplinary Teams ◽  
Narrative Synthesis ◽  
Concept Model ◽  
Burn Units

Background: Burn units are intensive care facilities specialized in the treatment of patients with severe burns. As burn injuries have a major impact in physical, psychosocial, and spiritual health, palliative care can be a strengthening component of integrated care. Aim: To review and appraise the existing evidence about the integration of palliative care in burn intensive care units with respect to (1) the concept, model and design and (2) the benefits and outcomes of this integration. Design: A systematic review was conducted following PRISMA guidelines. Protocol registered with PROSPERO (CRD42018111676). Data sources: Five electronic databases were searched (PubMed/NLM, Web of Science, MEDLINE/TR, Ovid, and CINAHL/EBSCO) until May 2019. A narrative synthesis of the findings was constructed. Hawker et al.’s tool was used for quality appraisal. Results: A total of 299 articles were identified, of which five were included for analysis involving a total of 7353 individuals. Findings suggest that there may be benefits from integrating palliative care in burn units, specifically in terms of patients’ comfort, decision-making processes, and family care. Multidisciplinary teams may experience lower levels of burden as result of integrating palliative care in burn units. Conclusion: This review reflects the challenging setting of burn intensive care units. Evidence from these articles suggests that the integration of palliative care in burn intensive care units improves patients’ comfort, decision-making process, and family care. Further research is needed to better understand how the integration of palliative care in burn intensive care units may be fostered and to identify the outcomes of this integration.

scholarly journals An evaluation of service user experience, clinical outcomes and service use associated with urgent care services that utilise telephone-based digital triage: a systematic review protocol

2021 ◽  
Vol 10 (1) ◽  
Author(s):  
Vanashree Sexton ◽  
Jeremy Dale ◽  
Helen Atherton
Keyword(s):  
Systematic Review ◽  
Mixed Methods ◽  
Clinical Outcomes ◽  
User Experience ◽  
Service User ◽  
Service Use ◽  
Urgent Care ◽  
Narrative Synthesis ◽  
Service User Experience ◽  
Synthesis Approach

Abstract Background Telephone-based digital triage is widely used by services that provide urgent care. This involves a call handler or clinician using a digital triage tool to generate algorithm-based care advice, based on a patient’s symptoms. Advice typically takes the form of signposting within defined levels of urgency to specific services or self-care advice. Despite wide adoption, there is limited evaluation of its impact on service user experience, service use and clinical outcomes; no previous systematic reviews have focussed on services that utilise digital triage, and its impact on these outcome areas within urgent care. This review aims to address this need, particularly now that telephone-based digital triage is well established in healthcare delivery. Methods Studies assessing the impact of telephone-based digital triage on service user experience, health care service use and clinical outcomes will be identified through searches conducted in Medline, Embase, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Web of Science and Scopus. Search terms using words relating to digital triage and urgent care settings (excluding in-hours general practice) will be used. The review will include all original study types including qualitative, quantitative and mixed methods studies; studies published in the last 20 years and studies published in English. Quality assessment of studies will be conducted using the Mixed Methods Appraisal Tool (MMAT); a narrative synthesis approach will be used to analyse and summarise findings. Discussion This is the first systematic review to evaluate service user experience, service use and clinical outcomes related to the use of telephone-based digital triage in urgent care settings. It will evaluate evidence from studies of wide-ranging designs. The narrative synthesis approach will enable the integration of findings to provide new insights on service delivery. Models of urgent care continue to evolve rapidly, with the emergence of self-triage tools and national help lines. Findings from this review will be presented in a practical format that can feed into the design of digital triage tools, future service design and healthcare policy. Systematic review registration This systematic review is registered on the international database of prospectively registered systematic reviews in health and social care (PROSPERO 2020 CRD42020178500).

scholarly journals The Association Between Dental Anxiety And Psychiatric Disorders And Symptoms: A Systematic Review

2018 ◽  
Vol 14 (1) ◽  
pp. 207-222 ◽  
Author(s):  
Harri Halonen ◽  
Jenna Nissinen ◽  
Heli Lehtiniemi ◽  
Tuula Salo ◽  
Pirkko Riipinen ◽  
...  
Keyword(s):  
Systematic Review ◽  
Psychiatric Disorders ◽  
Web Of Science ◽  
Dental Anxiety ◽  
Data Sources ◽  
Inclusion Criteria ◽  
Clinical Interviews ◽  
Specific Phobias ◽  
Axis I ◽  
High Level

Background:A growing amount of evidence suggests that dental anxiety is associated with other psychiatric disorders and symptoms. A systematic review was conducted to critically evaluate the studies of comorbidity of dental anxiety with other specific phobias and other Axis I psychiatric disorders.Objective:The aim of the review was to explore how dental anxiety is associated with other psychiatric disorders and to estimate the level of comorbid symptoms in dental anxiety patients.Methods:The review was conducted and reported in accordance with the MOOSE statement. Data sources included PubMed, PsycInfo, Web of Science and Scopus.Results:The search produced 631 hits, of which 16 unique records fulfilled the inclusion criteria. The number of eligible papers was low. Study populations were heterogeneous including 6,486 participants, and a total of 25 tests and in few cases clinical interviews were used in the evaluation processes. The results enhanced the idea about the comorbidity between dental anxiety and other psychiatric disorders. The effect was found strong in several studies.Conclusion:Patients with a high level of dental anxiety are more prone to have a high level of comorbid phobias, depression, mood disorders and other psychiatric disorders and symptoms.

scholarly journals Specialist palliative care services for older people in primary care: A systematic review using narrative synthesis

2019 ◽  
Vol 34 (1) ◽  
pp. 32-48 ◽  
Author(s):  
Kim de Nooijer ◽  
Yolanda WH Penders ◽  
Lara Pivodic ◽  
Nele J Van Den Noortgate ◽  
Peter Pype ◽  
...  
Keyword(s):  
Systematic Review ◽  
Primary Care ◽  
Palliative Care ◽  
Older People ◽  
Narrative Synthesis ◽  
Specialist Palliative Care ◽  
Family Carers ◽  
Care Services ◽  
Specialist Services ◽  
Palliative Care Services

Background: There is recognition that older people with incurable conditions should have access to specialist palliative care services. However, it remains unclear which activities and outcomes these services entail for older people in primary care and to which patients they are provided. Aim: The aim of this review was to identify the criteria for referral to specialist services; who provides specialist palliative care; through which activities and with which frequency; which outcomes are reported; and which suggestions are made to improve services. Design: Systematic review of the literature and narrative synthesis. Quality appraisal and selection of studies were performed independently by two researchers. Participant characteristics, intervention features, outcome data and suggestions for improvement were retrieved. Data sources: Embase, Medline, Web of Science, Cochrane, Google Scholar, PsycINFO and CINAHL EBSCO databases (until June 2019). Results: Ten eligible articles, three qualitative, three quantitative, three mixed-method and one narrative review, were identified. Referral criteria were mainly based on patient characteristics such as diagnosis. The specialist services involved a variety of activities and outcomes and descriptions were often lacking. Services could be improved regarding the information flow between healthcare professionals, greater in-depth palliative care knowledge for case managers and social workers, identification of a key worker and support for family carers. Conclusion: The limited evidence available shows areas for improvement of the quality of and access to specialist services for older people, such as support for family carers. In addition, this review underscores the need for comprehensive reporting of interventions and the use of consensus-based outcome measures.

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