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  • 1
    In: Palliative Medicine, SAGE Publications, Vol. 35, No. 7 ( 2021-07), p. 1225-1237
    Abstract: Specialist palliative care services play an important role in conducting advance care planning during COVID-19. Little is known about the challenges to advance care planning in this context, or the changes services made to adapt. Aim: Describe the challenges that UK specialist palliative care services experienced regarding advance care planning during COVID-19 and changes made to support timely conversations. Design: Online survey of UK palliative/hospice services’ response to COVID-19. Closed-ended responses are reported descriptively. Open-ended responses were analysed using a thematic Framework approach using the Social Ecological Model to understand challenges. Respondents: Two hundred and seventy-seven services. Results: More direct advance care planning was provided by 38% of services, and 59% provided more support to others. Some challenges to advance care planning pre-dated the pandemic, whilst others were specific to/exacerbated by COVID-19. Challenges are demonstrated through six themes: complex decision making in the face of a new infectious disease; maintaining a personalised approach; COVID-19-specific communication difficulties; workload and pressure; sharing information; and national context of fear and uncertainty. Two themes demonstrate changes made to support: adapting local processes and adapting local structures. Conclusions: Professionals and healthcare providers need to ensure advance care planning is individualised by tailoring it to the values, priorities, and ethnic/cultural/religious context of each person. Policymakers need to consider how high-quality advance care planning can be resourced as a part of standard healthcare ahead of future pandemic waves. In facilitating this, we provide questions to consider at each level of the Social Ecological Model.
    Type of Medium: Online Resource
    ISSN: 0269-2163 , 1477-030X
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2021
    detail.hit.zdb_id: 2027566-3
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  • 2
    In: BMJ Supportive & Palliative Care, BMJ
    Abstract: Advanced heart failure patients suffer with breathlessness and peripheral oedema, which are frequently treated with parenteral diuretics despite limited evidence. Aim To analyse the effectiveness of parenteral diuretics on breathlessness and peripheral oedema in advanced heart failure patients. Methods We searched Embase, MEDLINE(R), PsycINFO, CINAHL and CENTRAL from their respective inceptions to 2021, and performed handsearching, citation searching and grey literature search; limited to English publications. Selection criteria included parenteral (intravenous/subcutaneous) diuretic administration in advanced heart failure patients (New York Heart Association class III–IV). Two authors independently assessed articles for inclusion; one author extracted data. Data were synthesised through narrative synthesis or meta-analysed as appropriate. Results 4646 records were screened; 6 trials (384 participants) were included. All were randomised controlled trials (RCTs) comparing intravenous continuous furosemide infusion (CFI) versus intravenous bolus furosemide infusion (BFI). Improvement in breathlessness and peripheral oedema (two studies, n=161, OR 2.80, 95% CI 1.45 to 5.40; I 2 =0%), and increase in urine output (four studies, n=234, mean difference, MD 344.76, 95% CI 132.87 to 556.64; I 2 =44%), were statistically significant in favour of CFI. Significantly lower serum potassium was found in BFI compared with CFI (three studies, n=194, MD −0.20, 95% CI −0.38 to −0.01; I 2 =0%). There was no difference between CFI and BFI on reduction in weight, renal function or length of hospital stay. Conclusions CFI appears to improve congestion in advanced heart failure patients in the short term. Available data came from small trials. Larger, prospective RCTs are recommended to address the evidence gap.
    Type of Medium: Online Resource
    ISSN: 2045-435X , 2045-4368
    Language: English
    Publisher: BMJ
    Publication Date: 2022
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  • 3
    In: The Milbank Quarterly, Wiley, Vol. 97, No. 1 ( 2019-03), p. 113-175
    Abstract: Policy Points We identified two overarching classifications of integrated geriatric and palliative care to maximize older people's quality of life at the end of life. Both are oriented to person‐centered care, but with differing emphasis on either function or symptoms and concerns. Policymakers should both improve access to palliative care beyond just the last months of life and increase geriatric care provision to maintain and optimize function. This would ensure that continuity and coordination for potentially complex care needs across the continuum of late life would be maintained, where the demarcation of boundaries between healthy aging and healthy dying become increasingly blurred. Our findings highlight the urgent need for health system change to improve end‐of‐life care as part of universal health coverage. The use of health services should be informed by the likelihood of benefits and intended outcomes rather than on prognosis. Context In an era of unprecedented global aging, a key priority is to align health and social services for older populations in order to support the dual priorities of living well while adapting to a gradual decline in function. We aimed to provide a comprehensive synthesis of evidence regarding service delivery models that optimize the quality of life (QoL) for older people at the end of life across health, social, and welfare services worldwide. Methods We conducted a rapid scoping review of systematic reviews. We searched MEDLINE, CINAHL, EMBASE, and CDSR databases from 2000 to 2017 for reviews reporting the effectiveness of service models aimed at optimizing QoL for older people, more than 50% of whom were older than 60 and in the last one or two years of life. We assessed the quality of these included reviews using AMSTAR and synthesized the findings narratively. Results Of the 2,238 reviews identified, we included 72, with 20 reporting meta‐analysis. Although all the World Health Organization (WHO) regions were represented, most of the reviews reported data from the Americas (52 of 72), Europe (46 of 72), and/or the Western Pacific (28 of 72). We identified two overarching classifications of service models but with different target outcomes: Integrated Geriatric Care, emphasizing physical function, and Integrated Palliative Care, focusing mainly on symptoms and concerns. Areas of synergy across the overarching classifications included person‐centered care, education, and a multiprofessional workforce. The reviews assessed 117 separate outcomes. A meta‐analysis demonstrated effectiveness for both classifications on QoL, including symptoms such as pain, depression, and psychological well‐being. Economic analysis and its implications were poorly considered. Conclusions Despite their different target outcomes, those service models classified as Integrated Geriatric Care or Integrated Palliative Care were effective in improving QoL for older people nearing the end of life. Both approaches highlight the imperative for integrating services across the care continuum, with service involvement triggered by the patient's needs and likelihood of benefits. To inform the sustainability of health system change we encourage economic analyses that span health and social care and examine all sources of finance to understand contextual inequalities.
    Type of Medium: Online Resource
    ISSN: 0887-378X , 1468-0009
    URL: Issue
    Language: English
    Publisher: Wiley
    Publication Date: 2019
    detail.hit.zdb_id: 1482881-9
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  • 4
    In: Journal of Palliative Medicine, Mary Ann Liebert Inc, Vol. 25, No. 3 ( 2022-03-01), p. 465-471
    Type of Medium: Online Resource
    ISSN: 1096-6218 , 1557-7740
    Language: English
    Publisher: Mary Ann Liebert Inc
    Publication Date: 2022
    detail.hit.zdb_id: 2030890-5
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  • 5
    In: Health Services and Delivery Research, National Institute for Health and Care Research, Vol. 9, No. 12 ( 2021-5), p. 1-218
    Abstract: Most deaths still take place in hospital; cost-effective commissioning of end-of-life resources is a priority. This review provides clarity on the effectiveness of hospital-based specialist palliative care. Objectives The objectives were to assess the effectiveness and cost-effectiveness of hospital-based specialist palliative care. Population Adult patients with advanced illnesses and their unpaid caregivers. Intervention Hospital-based specialist palliative care. Comparators Inpatient or outpatient hospital care without specialist palliative care input at the point of entry to the study, or community care or hospice care provided outside the hospital setting (usual care). Primary outcomes Patient health-related quality of life and symptom burden. Data sources Six databases (The Cochrane Library, MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO and CareSearch), clinical trial registers, reference lists and systematic reviews were searched to August 2019. Review methods Two independent reviewers screened, data extracted and assessed methodological quality. Meta-analysis was carried out using RevMan (The Cochrane Collaboration, The Nordic Cochrane Centre, Copenhagen, Denmark), with separate synthesis of qualitative data. Results Forty-two randomised controlled trials involving 7779 participants (6678 patients and 1101 unpaid caregivers) were included. Diagnoses of participants were as follows: cancer, 21 studies; non-cancer, 14 studies; and mixed cancer and non-cancer, seven studies. Hospital-based specialist palliative care was offered in the following models: ward based (one study), inpatient consult (10 studies), outpatient (six studies), hospital at home or hospital outreach (five studies) and multiple settings that included hospital (20 studies). Meta-analyses demonstrated significant improvement favouring hospital-based specialist palliative care over usual care in patient health-related quality of life (10 studies, standardised mean difference 0.26, 95% confidence interval 0.15 to 0.37; I 2  = 3%) and patient satisfaction with care (two studies, standardised mean difference 0.36, 95% confidence interval 0.14 to 0.57; I 2  = 0%), a significant reduction in patient symptom burden (six studies, standardised mean difference –0.26, 95% confidence interval –0.41 to –0.12; I 2  = 0%) and patient depression (eight studies, standardised mean difference –0.22, 95% confidence interval –0.34 to –0.10; I 2  = 0%), and a significant increase in the chances of patients dying in their preferred place (measured by number of patients with home death) (seven studies, odds ratio 1.63, 95% confidence interval 1.23 to 2.16; I 2  = 0%). There were non-significant improvements in pain (four studies, standardised mean difference –0.16, 95% confidence interval –0.33 to 0.01; I 2  = 0%) and patient anxiety (five studies, mean difference –0.63, 95% confidence interval –2.22 to 0.96; I 2  = 76%). Hospital-based specialist palliative care showed no evidence of causing serious harm. The evidence on mortality/survival and cost-effectiveness was inconclusive. Qualitative studies (10 studies, 322 participants) suggested that hospital-based specialist palliative care was beneficial as it ensured personalised and holistic care for patients and their families, while also fostering open communication, shared decision-making and respectful and compassionate care. Limitation In almost half of the included randomised controlled trials, there was palliative care involvement in the control group. Conclusions Hospital-based specialist palliative care may offer benefits for person-centred outcomes including health-related quality of life, symptom burden, patient depression and satisfaction with care, while also increasing the chances of patients dying in their preferred place (measured by home death) with little evidence of harm. Future work More studies are needed of populations with non-malignant diseases, different models of hospital-based specialist palliative care, and cost-effectiveness. Study registration This study is registered as PROSPERO CRD42017083205. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research ; Vol. 9, No. 12. See the NIHR Journals Library website for further project information.
    Type of Medium: Online Resource
    ISSN: 2050-4349 , 2050-4357
    Language: English
    Publisher: National Institute for Health and Care Research
    Publication Date: 2021
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  • 6
    In: Journal of the Royal Society of Medicine, SAGE Publications, Vol. 115, No. 6 ( 2022-06), p. 220-230
    Abstract: Summary Objective To explore the experiences of, and impact on, staff working in palliative care during the COVID-19 pandemic. Design Qualitative multiple case study using semi-structured interviews between November 2020 and April 2021 as part of the CovPall study. Data were analysed using thematic framework analysis. Setting Organisations providing specialist palliative services in any setting. Participants Staff working in specialist palliative care, purposefully sampled by the criteria of role, care setting and COVID-19 experience. Main outcome measures Experiences of working in palliative care during the COVID-19 pandemic. Results Five cases and 24 participants were recruited (n = 12 nurses, 4 clinical managers, 4 doctors, 2 senior managers, 1 healthcare assistant, 1 allied healthcare professional). Central themes demonstrate how infection control constraints prohibited and diluted participants’ ability to provide care that reflected their core values, resulting in experiences of moral distress. Despite organisational, team and individual support strategies, continually managing these constraints led to a ‘crescendo effect’ in which the impacts of moral distress accumulated over time, sometimes leading to burnout. Solidarity with colleagues and making a valued contribution provided ‘moral comfort’ for some. Conclusions This study provides a unique insight into why and how healthcare staff have experienced moral distress during the pandemic, and how organisations have responded. Despite their experience of dealing with death and dying, the mental health and well-being of palliative care staff was affected by the pandemic. Organisational, structural and policy changes are urgently required to mitigate and manage these impacts.
    Type of Medium: Online Resource
    ISSN: 0141-0768 , 1758-1095
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2022
    detail.hit.zdb_id: 2046643-2
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  • 7
    In: Palliative Medicine, SAGE Publications, Vol. 35, No. 1 ( 2021-01), p. 151-160
    Abstract: Public involvement is increasingly considered a prerequisite for high-quality research. However, involvement in palliative care is impeded by limited evidence on the best approaches for populations affected by life-limiting illness. Aim: To evaluate a strategy for public involvement in palliative care and rehabilitation research, to identify successful approaches and areas for improvement. Design: Co-produced qualitative evaluation using focus groups and interviews. Thematic analysis undertaken by research team comprising public contributors and researchers. Setting/participants: Researchers and public members from a palliative care and rehabilitation research institute, UK. Results: Seven public members and 19 researchers participated. Building and maintaining relationships, taking a flexible approach and finding the ‘right’ people were important for successful public involvement. Relationship building created a safe environment for discussing sensitive topics, although public members felt greater consideration of emotional support was needed. Flexibility supported involvement alongside unpredictable circumstances of chronic and life-limiting illness, and was facilitated by responsive communication, and opportunities for in-person and virtual involvement at a project- and institution-level. However, more opportunities for two-way feedback throughout projects was suggested. Finding the ‘right’ people was crucial given the diverse population served by palliative care, and participants suggested more care needed to be taken to identify public members with experience relevant to specific projects. Conclusion: Within palliative care research, it is important for involvement to focus on building and maintaining relationships, working flexibly, and identifying those with relevant experience. Taking a strategic approach and developing adequate infrastructure and networks can facilitate public involvement within this field.
    Type of Medium: Online Resource
    ISSN: 0269-2163 , 1477-030X
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2021
    detail.hit.zdb_id: 2027566-3
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  • 8
    In: International Journal of Health Policy and Management, Maad Rayan Publishing Company, ( 2021-09-08)
    Abstract: Background: Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the coronavirus disease 2019 (COVID-19) pandemic are unknown. The aim of this study is to understand volunteer deployment and activities within palliative care services, and to identify what may affect any changes in volunteer service provision, during the COVID-19 pandemic. Methods: Multi-national online survey disseminated via key stakeholders to specialist palliative care services, completed by lead clinicians. Data collected on volunteer roles, deployment, and changes in volunteer engagement. Analysis included descriptive statistics, a multivariable logistic regression, and analysis of free-text comments using a content analysis approach. Results: 458 respondents: 277 UK, 85 rest of Europe, and 95 rest of the world. 68.5% indicated volunteer use pre-COVID-19 across a number of roles (from 458): direct patient facing support (58.7%), indirect support (52.0%), back office (48.5%) and fundraising (45.6%). 11% had volunteers with COVID-19. Of those responding to a question on change in volunteer deployment (328 of 458) most (256/328, 78%) indicated less or much less use of volunteers. Less use of volunteers was associated with being an in-patient hospice, (odds ratio [OR]=0.15, 95% CI=0.07-0.3, P 〈 .001). This reduction in volunteers was felt to protect potentially vulnerable volunteers, with policy changes preventing volunteer support. However, adapting was also seen where new roles were created, or existing roles pivoted to provide virtual support. Conclusion: Volunteers were mostly prevented from supporting many forms of palliative care which may have quality and safety implications given their previously central roles. Volunteer re-deployment plans are needed that take a more considered approach, using volunteers more flexibly to enhance care while ensuring safe working practices. Consideration needs to be given to widening the volunteer base away from those who may be considered to be most vulnerable to COVID-19.
    Type of Medium: Online Resource
    ISSN: 2322-5939
    Language: English
    Publisher: Maad Rayan Publishing Company
    Publication Date: 2021
    detail.hit.zdb_id: 2724317-5
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  • 9
    Online Resource
    Online Resource
    Wiley ; 2021
    In:  Journal of the American Geriatrics Society Vol. 69, No. 5 ( 2021-05), p. 1177-1179
    In: Journal of the American Geriatrics Society, Wiley, Vol. 69, No. 5 ( 2021-05), p. 1177-1179
    Abstract: See the Reply by Moody et al . in this issue.
    Type of Medium: Online Resource
    ISSN: 0002-8614 , 1532-5415
    URL: Issue
    Language: English
    Publisher: Wiley
    Publication Date: 2021
    detail.hit.zdb_id: 2040494-3
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  • 10
    In: BMC Palliative Care, Springer Science and Business Media LLC, Vol. 21, No. 1 ( 2022-10-10)
    Abstract: Independent charitably funded hospices have been an important element of the UK healthcare response to the COVID-19 pandemic. Hospices usually have different funding streams, procurement processes, and governance arrangements compared to NHS provision, which may affect their experiences during the COVID-19 pandemic. The aim of this study is to understand the challenges faced by charitably funded hospices during the COVID-19 pandemic. Methods Eligible Organisations providing specialist palliative or hospice care completed the online CovPall survey (2020) which explored their response to the COVID-19 pandemic. Eligible organisations were then purposively selected to participate in interviews as part of qualitative case studies (2020-21) to understand challenges in more depth. Free-text responses from the survey were analysed using content analysis and were categorised accordingly. These categorisations were used a priori for a reflexive thematic analysis of interview data. Results 143 UK independent charitably funded hospices completed the online CovPall survey. Five hospices subsequently participated in qualitative case studies (n = 24 staff interviews). Key themes include: vulnerabilities of funding; infection control during patient care; and bereavement support provision. Interviewees discussed the fragility of income due to fundraising events stopping; the difficulties of providing care to COVID-19 and non-COVID-19 patients within relatively small organisations; and challenges with maintaining the quality of bereavement services. Conclusion Some unique care and provision challenges during the COVID-19 pandemic were highlighted by charitably funded hospices. Funding core services charitably and independently may affect their ability to respond to pandemics, or scenarios where resources are unexpectedly insufficient.
    Type of Medium: Online Resource
    ISSN: 1472-684X
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2022
    detail.hit.zdb_id: 2091556-1
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