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.

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 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.

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.

A systematic review of instruments related to family caregivers of palliative care patients

2010 ◽  
Vol 24 (7) ◽  
pp. 656-668 ◽  
Author(s):  
Peter L Hudson ◽  
Tom Trauer ◽  
Suzanne Graham ◽  
Gunn Grande ◽  
Gail Ewing ◽  
...  
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Family Caregivers

scholarly journals Community access to palliative care medicines—patient and professional experience: systematic review and narrative synthesis

2021 ◽  
pp. bmjspcare-2020-002761
Author(s):  
Mizue Ogi ◽  
Natasha Campling ◽  
Jakki Birtwistle ◽  
Alison Richardson ◽  
Michael I Bennett ◽  
...  
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Service Delivery ◽  
Community Pharmacy ◽  
Access To Medicines ◽  
Access Time ◽  
Cochrane Library ◽  
Narrative Synthesis ◽  
Community Based ◽  
Care Models

BackgroundProviding palliative care patients living at home with timely access to medicines is critical to enable effective symptom management, minimise burden and reduce unplanned use of healthcare services. Little is known about how diverse community-based palliative care models influence medicine access.ObjectiveTo produce a critical overview of research on experiences and outcomes of medicine access in community-based palliative care models of service delivery through a systematic review and narrative synthesis.MethodsMEDLINE, CINAHL, EMBASE, PsycINFO, Cochrane Library databases and grey literature were systematically searched for all types of studies. Study quality was assessed using the Mixed Methods Appraisal Tool; a narrative synthesis was used to integrate and summarise findings.Results3331 articles were screened; 10 studies were included in the final sample. Studies included a focus on community pharmacy (n=4), hospice emergency medication kits (HEMKs) in the home (n=3), specialist community nurse prescribers (n=1), general practice (n=1) and one study included multiple service delivery components. Community pharmacy was characterised by access delays due to lack of availability of medicine stock and communication difficulties between the pharmacy and other healthcare professionals. HEMKs were perceived to reduce medicine access time out of hours and speed symptom control. However, the majority of studies comprised small, local samples, largely limited to self-reports of health professionals. There was a lack of data on outcomes, and no comparisons between service delivery models.ConclusionsFurther research is required to understand which models facilitate rapid and efficient access to medicines for community-based palliative care patients.

48 Junior doctors and end of life care: a systematic review and narrative synthesis

2018 ◽  
Vol 8 (3) ◽  
pp. 378.1-378
Author(s):  
Aamena Bharmal ◽  
Tessa Morgan ◽  
Stephen Barclay
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Empirical Literature ◽  
Junior Doctors ◽  
List Type ◽  
Narrative Synthesis ◽  
Life Care ◽  
Dying Patients

BackgroundNearly 50% of all deaths in the UK occur in hospitals.1 The majority of these patients die in a generalist setting2 where their medical care is predominately provided by junior doctors. There is a growing recognition of a need to embed palliative care into doctors’ training.3Little evidence exists, however, concerning junior doctors’ current experiences of palliative care.AimsTo review the empirical literature between 2000 and 2018 concerning junior doctors experience of and preparation for palliative and end of life care.MethodsSystematic review and narrative synthesis of qualitative and quantitative studies within six databases to find empirical studies on junior doctors experience of adult palliative care in inpatient hospital or hospice settings.ResultsFrom the initial 6308 titles identified, 32 studies met the inclusion criteria with a further five identified from reference searching.Three key themes were identified:‘Significance of death and dying’‘Thrown into the deep end’‘Addressing the gaps’. All the studies provided evidence that junior doctors care for many dying patients very early in their career. Junior doctors do not feel adequately prepared to care for dying patients and feel unsupported when doing so. Junior doctors report emotional distress when caring for their first few dying patients, memories of which continue to affect them throughout their careers. Their attitudes towards end–of–life care varied: some reported it as a privilege while others associated it with a culture of disengagement that stigmatised dying patients.ConclusionsJunior doctors need further support, education and preparation for their exposure to palliative care. Experiential learning, reflective practice and role modelling are described as the most effective ways to learn palliative care and this also teaches them other transferrable skills such as communication, teamwork and professionalism that are vital for their future careers.References. Office for National Statistics Deaths Registered in England and Wales2016.. Gomes B, Higginson I. Where people die (1974–2030): Past trends, future projections and implications for care. Palliative Med2008;22:33–41.. General Medical Council. Tomorrow’s doctors: Recommendations on undergraduate medical education 2002 (2nd ed.). London: GMC.

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 Multi-disciplinary palliative care is effective in people with symptomatic heart failure: A systematic review and narrative synthesis

2019 ◽  
Vol 33 (8) ◽  
pp. 1003-1016 ◽  
Author(s):  
Sushma Datla ◽  
Cornelia Antonia Verberkt ◽  
Angela Hoye ◽  
Daisy J.A. Janssen ◽  
Miriam J Johnson
Keyword(s):  
Heart Failure ◽  
Systematic Review ◽  
Palliative Care ◽  
Grey Literature ◽  
Risk Of Bias ◽  
Future Research ◽  
Narrative Synthesis ◽  
Symptomatic Heart Failure ◽  
Evaluation Phase ◽  
Patient Reported

Background: Despite recommendations, people with heart failure have poor access to palliative care. Aim: To identify the evidence in relation to palliative care for people with symptomatic heart failure. Design: Systematic review and narrative synthesis. (PROSPERO CRD42016029911) Data sources: Databases (Medline, Cochrane database, CINAHL, PsycINFO, HMIC, CareSearch Grey Literature), reference lists and citations were searched and experts contacted. Two independent reviewers screened titles and abstracts and retrieved papers against inclusion criteria. Data were extracted from included papers and studies were critically assessed using a risk of bias tool according to design. Results: Thirteen interventional and 10 observational studies were included. Studies were heterogeneous in terms of population, intervention, comparator, outcomes and design rendering combination inappropriate. The evaluation phase studies, with lower risk of bias, using a multi-disciplinary specialist palliative care intervention showed statistically significant benefit for patient-reported outcomes (symptom burden, depression, functional status, quality of life), resource use and costs of care. Benefit was not seen in studies with a single component/discipline intervention or with higher risk of bias. Possible contamination in some studies may have caused under-estimation of effect and missing data may have introduced bias. There was no apparent effect on survival. Conclusion: Overall, the results support the use of multi-disciplinary palliative care in people with advanced heart failure but trials do not identify who would benefit most from specialist palliative referral. There are no sufficiently robust multi-centre evaluation phase trials to provide generalisable findings. Use of common population, intervention and outcomes in future research would allow meta-analysis.

scholarly journals ‘It’s not what they were expecting’: A systematic review and narrative synthesis of the role and experience of the hospital palliative care volunteer

2020 ◽  
Vol 34 (5) ◽  
pp. 589-604 ◽  
Author(s):  
Melissa J Bloomer ◽  
Catherine Walshe
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Health Professionals ◽  
Psychosocial Support ◽  
Narrative Synthesis ◽  
Dying Patients ◽  
Hands On ◽  
High Acuity ◽  
Positive Work Relationships ◽  
And Training

Background: Volunteers make a major contribution to palliative care but little is known specifically about hospital palliative care volunteers. Aim: The aim of this study was to understand the role and experience of hospital palliative care volunteers. Design: Systematic review and narrative synthesis. Data sources: CINAHL, Embase, Medline, PsycINFO, PubMed and three dissertation databases were searched from inception to June 2019. A forward and backward search of included papers in key journals was also undertaken. Records were independently assessed against inclusion criteria by authors. Included papers were assessed for quality, but none were excluded. Results: In total, 14 papers were included. Hospital palliative care volunteers were mostly female, aged above 40 years, and training varied considerably. Volunteers faced unique challenges in supporting dying patients due to the nature of hospital care, rapid patient turnover and the once-off nature of support. Volunteer roles were diverse, with some providing hands-on care, but most focused on ‘being with’ the dying patient. Volunteers were appreciated for providing psychosocial support, seen as complementary to, rather than replacing the work of health professionals. Given volunteers were often required to work across multiple wards, establishing positive work relationships with health professionals was challenging. Divergent views about whether the volunteer was part of or external to the team impacted volunteers’ experience and perceptions of the value of their contribution. Conclusion: Hospital palliative care volunteers face unique challenges in supporting terminally ill patients. Volunteer support in hospital settings is possible and appropriate, if sufficient support is available to mitigate the challenges associated with complex, high-acuity care.

Sign in / Sign up

Export Citation Format

Share Document