scholarly journals Understanding the palliative care needs and experiences of people with mesothelioma and their family carers: An integrative systematic review

2021 ◽  
pp. 026921632110073
Author(s):  
Madeleine Harrison ◽  
Clare Gardiner ◽  
Bethany Taylor ◽  
Stephanie Ejegi-Memeh ◽  
Liz Darlison
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Information Needs ◽  
Empirical Studies ◽  
Cochrane Library ◽  
Specialist Palliative Care ◽  
Family Carers ◽  
Care Needs ◽  
The Impact ◽  
Palliative Care Needs

Background: People with mesothelioma and their families have palliative care needs throughout the relatively short trajectory of their illness. Aim: To describe the palliative care needs and experiences of people with mesothelioma and their family carers. Design: Integrative systematic review with narrative synthesis (PROSPERO: CRD42020190115). Data sources: MEDLINE, CINAHL, PsycINFO and the Cochrane Library were searched for articles published between 01 January 2000 and 10 May 2020. Articles were included if they presented empirical studies or comprehensive reviews including information about the palliative care needs and experiences of people with mesothelioma and their family carers. Results: The search yielded 508 articles, 14 were included in the analysis. A cross cutting theme of ‘uncertainty’ was identified encompassing five themes: (1) organisation and co-ordination of services, (2) communication and information needs, (3) management of care needs and high symptom burden, (4) consideration of the impact of seeking compensation and (5) family carer needs. Our findings demonstrate that people with mesothelioma want a co-ordinated, team-based approach to palliative care with a named point of contact. Whilst carers value and benefit from early referral to specialist palliative care, this does not necessarily reflect the outcomes and views of patients. Conclusion: The evidence base around the palliative care needs and experiences of people with mesothelioma and their carers needs to be strengthened. The results of this review support the need to develop a greater understanding about the role non-specialist palliative care clinicians’ play in providing generalist palliative care for people with mesothelioma and their carers.

scholarly journals The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review

2020 ◽  
Vol 34 (8) ◽  
pp. 1006-1018
Author(s):  
Emily Adam ◽  
Katherine E Sleeman ◽  
Sarah Brearley ◽  
Katherine Hunt ◽  
Irene Tuffrey-Wijne
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Intellectual Disabilities ◽  
Social Care ◽  
Barriers And Facilitators ◽  
Cochrane Library ◽  
Care Needs ◽  
People With Intellectual Disabilities ◽  
Adults With Intellectual Disabilities ◽  
Palliative Care Needs

Background: There is evidence that people with intellectual disabilities experience healthcare inequalities, including access to specialist palliative care, but to date, there has not been a systematic review of empirical evidence. Aim: To identify the palliative care needs of adults with intellectual disabilities and the barriers and facilitators they face in accessing palliative care. Design: Systematic review using a narrative synthesis approach (International prospective register of systematic reviews (PROSPERO) registration number: CRD42019138974). Data sources: Five databases were searched in June 2019 (MEDLINE, Embase, PsycINFO, the Cochrane library and CINAHL) along with hand searches and a search of the grey literature. All study designs were included. Results: A total of 52 studies were identified, all of which were conducted in high-income countries, the majority in the United Kingdom ( n = 28). From a total of 2970 participants across all studies, only 1% were people with intellectual disabilities and 1.3% were family members; the majority (97%) were health/social care professionals. Identified needs included physical needs, psychosocial and spiritual needs, and information and communication needs. Barriers and facilitators were associated with education (e.g. staff knowledge, training and experience), communication (e.g. staff skill in assessing and addressing needs of people with communication difficulties), collaboration (e.g. importance of sustained multidisciplinary approach) and health and social care delivery (e.g. staffing levels, funding and management support). Conclusion: This review highlights the specific problems in providing equitable palliative care for adults with intellectual disabilities, but there is a lack of research into strategies to improve practice. This should be prioritised using methods that include people with intellectual disabilities and families.

Healthcare providers’ views and experiences of non-specialist palliative care in hospitals: A qualitative systematic review and thematic synthesis

2020 ◽  
Vol 34 (5) ◽  
pp. 605-618 ◽  
Author(s):  
Mary Nevin ◽  
Geralyn Hynes ◽  
Valerie Smith
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Acute Care ◽  
Care Delivery ◽  
Healthcare Providers ◽  
Specialist Palliative Care ◽  
Care Needs ◽  
Thematic Synthesis ◽  
Qualitative Systematic Review ◽  
Palliative Care Needs

Background: Healthcare providers working in hospitals are frequently exposed to patients with palliative care needs. For most patients, these reflect non-specialist rather than specialist palliative care needs. Embedding palliative care principles early in patients’ disease trajectories within acute care delivery in hospitals, however, is a challenge. How to best understand the experiences of those providing non-specialist palliative care in hospitals has not been systematically assessed. Aim: To synthesise the evidence on healthcare providers’ views and experiences of non-specialist palliative care in hospitals. Design: A qualitative systematic review and thematic synthesis using Thomas and Harden’s thematic synthesis framework. Data sources: Databases of MEDLINE, CINAHL, PsycINFO and EMBASE were searched from date of inception to March 2018. Studies were eligible for inclusion if they reported on healthcare providers’ views and experiences of non-specialist palliative care in hospitals. Studies were appraised for quality but not excluded on that basis. The review was prospectively registered with the International Prospective Register of Systematic Reviews. Results: Thirty-nine papers of 37 studies were included, representing 985 hospital healthcare providers’ views and experiences. Four major analytical themes emerged; ‘Understanding of Palliative Care’, ‘Complexities of Communication’, ‘Hospital Ecosystem’ and ‘Doctors and Nurses – a Different Lens’. Conclusions: Non-specialist palliative care in hospitals is operationalised as care in the last weeks and days of life. The organisation of acute care, inter-disciplinary working practices, clinician attitudes, poor communication structures and lack of education and training in palliative care principles exacerbates poor implementation of this care earlier for patients in hospitals.

scholarly journals What makes palliative care needs “complex”? A multisite sequential explanatory mixed methods study of patients referred for specialist palliative care

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Anne M. Finucane ◽  
Connie Swenson ◽  
John I. MacArtney ◽  
Rachel Perry ◽  
Hazel Lamberton ◽  
...  
Keyword(s):  
Palliative Care ◽  
Focus Groups ◽  
Healthcare Professionals ◽  
Psychological Needs ◽  
Care Providers ◽  
Specialist Palliative Care ◽  
Care Needs ◽  
Complex Needs ◽  
Sequential Explanatory ◽  
Palliative Care Needs

Abstract Background Specialist palliative care (SPC) providers tend to use the term ‘complex’ to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. Methods Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. Results Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. Conclusions Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.

scholarly journals The impact of the environment on patient experiences of hospital admissions in palliative care

2015 ◽  
Vol 8 (4) ◽  
pp. 485-492 ◽  
Author(s):  
Jackie Robinson ◽  
Merryn Gott ◽  
Clare Gardiner ◽  
Christine Ingleton
Keyword(s):  
Palliative Care ◽  
Health Professionals ◽  
Hospital Admissions ◽  
Hospital Setting ◽  
Prognostic Indicators ◽  
Care Needs ◽  
Acute Hospitals ◽  
Almost All ◽  
The Impact ◽  
Palliative Care Needs

ObjectiveTo explore the impact of environment on experiences of hospitalisation from the perspective of patient's with palliative care needs.MethodsA qualitative study design using longitudinal semistructured, face-to-face interviews were used to elicit the views of patients with palliative care needs admitted to hospital in 1 large urban acute hospital in New Zealand. The sample comprised of 14 patients admitted to hospital between July 2013 and March 2014 who met one of the Gold Standard Framework Prognostic Indicators for palliative care need.ResultsAlmost all participants described a range of factors associated with the environment which impacted negatively on their experiences of hospitalisation. This included challenges with the physical surroundings, the impact on social relationships with other patients, families and health professionals and the influence of the cultural milieu of the hospital setting.ConclusionsEmulating the ‘ideal’ environment for palliative care such as that provided in a hospice setting is an unrealistic goal for acute hospitals. Paying attention to the things that can be changed, such as enabling family to stay and improving the flexibility of the physical environment while improving the social interplay between patients and health professionals, may be a more realistic approach than replicating the hospice environment in order to reduce the burden of hospitalisations for patients with palliative care needs.

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 Reducing time in acute hospitals: A stepped-wedge randomised control trial of a specialist palliative care intervention in residential care homes

2020 ◽  
Vol 34 (5) ◽  
pp. 571-579 ◽  
Author(s):  
Liz Forbat ◽  
Wai-Man Liu ◽  
Jane Koerner ◽  
Lawrence Lam ◽  
Juliane Samara ◽  
...  
Keyword(s):  
Palliative Care ◽  
Length Of Stay ◽  
Care Home ◽  
Care Homes ◽  
Randomised Control Trial ◽  
Specialist Palliative Care ◽  
Stepped Wedge ◽  
Model Of Care ◽  
Care Needs ◽  
Palliative Care Needs

Background: Care home residents are frequently transferred to hospital, rather than provided with appropriate and timely specialist care in the care home. Aim: To determine whether a model of care providing specialist palliative care in care homes, called Specialist Palliative Care Needs Rounds, could reduce length of stay in hospital. Design: Stepped-wedge randomised control trial. The primary outcome was length of stay in acute care (over 24-h duration), with secondary outcomes being the number and cost of hospitalisations. Care homes were randomly assigned to cross over from control to intervention using a random number generator; masking was not possible due to the nature of the intervention. Analyses were by intention to treat. The trial was registered with ANZCTR: ACTRN12617000080325. Data were collected between 1 February 2017 and 30 June 2018. Setting/participants: 1700 residents in 12 Australian care homes for older people. Results: Specialist Palliative Care Needs Rounds led to reduced length of stay in hospital (unadjusted difference: 0.5 days; adjusted difference: 0.22 days with 95% confidence interval: −0.44, −0.01 and p = 0.038). The intervention also provided a clinically significant reduction in the number of hospitalisations by 23%, from 5.6 to 4.3 per facility-month. A conservative estimate of annual net cost-saving from reduced admissions was A$1,759,011 (US$1.3 m; UK£0.98 m). Conclusion: The model of care significantly reduces hospitalisations through provision of outreach by specialist palliative care clinicians. The data offer substantial evidence for Specialist Palliative Care Needs Rounds to reduce hospitalisations in older people approaching end of life, living in care homes.

scholarly journals 188 Identification of patients with potential palliative care needs: a systematic review of screening tools in primary care

2020 ◽  
Author(s):  
Yousuf ElMokhallalati ◽  
Stephen H Bradley ◽  
Emma Chapman ◽  
Lucy Ziegler ◽  
Fliss EM Murtagh ◽  
...  
Keyword(s):  
Systematic Review ◽  
Primary Care ◽  
Palliative Care ◽  
Screening Tools ◽  
Care Needs ◽  
Palliative Care Needs

scholarly journals Tools to help healthcare professionals recognize palliative care needs in patients with advanced heart failure: A systematic review

2020 ◽  
pp. 026921632096394 ◽  
Author(s):  
Stephanie MC Ament ◽  
Inge ME Couwenberg ◽  
Josiane JJ Boyne ◽  
Jos Kleijnen ◽  
Henri EJH Stoffers ◽  
...  
Keyword(s):  
Heart Failure ◽  
Systematic Review ◽  
Palliative Care ◽  
Chronic Heart Failure ◽  
Health Care Professionals ◽  
Healthcare Professionals ◽  
Care Process ◽  
Care Needs ◽  
Process Guidance ◽  
Palliative Care Needs

Background: The delivery of palliative care interventions is not widely integrated in chronic heart failure care as the recognition of palliative care needs is perceived as difficult. Tools may facilitate healthcare professionals to identify patients with palliative care needs in advanced chronic heart failure. Aim: To identify tools to help healthcare professionals recognize palliative care needs in patients with advanced chronic heart failure. Design: This systematic review was registered in the PROSPERO database (CRD42019131896). Evidence of tools’ development, evaluation, feasibility, and implementation was sought and described. Data sources: Electronic searches to identify references of tools published until June 2019 were conducted in MEDLINE, CINAHL, and EMBASE. Hand-searching of references and citations was undertaken. Based on the identified tools, a second electronic search until September 2019 was performed to check whether all evidence about these tools in the context of chronic heart failure was included. Results: Nineteen studies described a total of seven tools. The tools varied in purpose, intended user and properties. The tools have been validated to a limited extent in the context of chronic heart failure and palliative care. Different health care professionals applied the tools in various settings at different moments of the care process. Guidance and instruction about how to apply the tool revealed to be relevant but may be not enough for uptake. Spiritual care needs were perceived as difficult to assess. Conclusion: Seven tools were identified which showed different and limited levels of validity in the context of palliative care and chronic heart failure.

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