scholarly journals Indigenous compared with non-Indigenous Australian patients at entry to specialist palliative care: Cross-sectional findings from a multi-jurisdictional dataset

PLoS ONE ◽  
2019 ◽  
Vol 14 (5) ◽  
pp. e0215403 ◽  
Author(s):  
John A. Woods ◽  
Jade C. Newton ◽  
Sandra C. Thompson ◽  
Eva Malacova ◽  
Hanh T. Ngo ◽  
...  
Keyword(s):  
Palliative Care ◽  
Specialist Palliative Care ◽  
Indigenous Australian ◽  
Cross Sectional

Assisting People With Their Living, Not Their Dying: Health Professionals’ Perspectives of Palliative Care and Opioids in ILD

2021 ◽  
pp. 104990912110186
Author(s):  
Lauren Russo ◽  
Karen Willis ◽  
Natasha Smallwood
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Palliative Care ◽  
Health Care System ◽  
Therapeutic Relationships ◽  
Specialist Palliative Care ◽  
Cross Sectional ◽  
Symptom Palliation ◽  
Care System

Objectives: Interstitial lung disease (ILD) is a debilitating and life-limiting condition, requiring multi-disciplinary care. While guidelines recommend early specialist palliative care referral to improve symptoms and quality of life, few patients access such care towards the end-of-life. This study aimed to explore clinicians’ perspectives regarding specialist palliative care and opioids to understand barriers to optimal care and guide clinical practice improvement initiatives. Methods: A cross-sectional, exploratory, qualitative study was undertaken with Australian respiratory clinicians caring for people with ILD (n = 17). In-depth, semi-structured interviews were audio-recorded, transcribed verbatim and coded. Thematic analysis was undertaken to extrapolate recurring ideas from the data. Results: Four themes were identified: 1) understanding how to improve patient care and support, 2) the need to dispel stigmatized beliefs and misconceptions, 3) the importance of trusted relationships and good communication and 4) the challenges of navigating the health-care system. Participants discussed the need to implement early specialist palliative care and symptom palliation to alleviate symptoms, provide emotional support and augment quality of life. Participants described challenges accessing palliative care and opioids due to stigmatized beliefs amongst patients and clinicians and difficulties navigating the health-care system. Trusted therapeutic relationships with patients and strong inter-disciplinary partnerships with collaborative education and communication were perceived to improve patients’ access to symptom palliation. Conclusion: Specialist palliative care and opioids were believed to improve patients’ quality of life, however, many barriers can make accessing such care challenging. To address these issues, multi-disciplinary collaboration, high-quality communication and trusted therapeutic relationships are crucial throughout the ILD illness journey.

scholarly journals Occurrence and timely management of problems requiring prompt intervention among Indigenous compared with non-Indigenous Australian palliative care patients: a multijurisdictional cohort study

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e042268
Author(s):  
John A Woods ◽  
Judith M Katzenellenbogen ◽  
Kevin Murray ◽  
Claire E Johnson ◽  
Sandra C Thompson
Keyword(s):  
Palliative Care ◽  
Cohort Study ◽  
Cultural Barriers ◽  
Survival Models ◽  
Indigenous Australians ◽  
Specialist Palliative Care ◽  
Indigenous Australian ◽  
Phase Duration ◽  
Core Element ◽  
Similar Frequency

ObjectivesAnticipation and prompt relief of symptoms among patients with a life-limiting illness is a core element of palliative care. Indigenous Australians commonly encounter cultural barriers in healthcare that may impair outcomes. The Palliative Care Outcomes Collaboration collects patient care data for the purposes of continuous quality improvement and benchmarking, with each recorded care episode divided into phases that reflect a patient’s condition. We aimed to investigate differences between Indigenous and non-Indigenous patients in the occurrence and duration of ‘unstable’ phases (which indicate unanticipated deterioration in a patient’s condition or circumstances), and determine attainment of the relevant benchmark (resolution of unstable phases in ≤3 days in 90% of cases) for both groups.DesignCohort study.SettingAustralia-wide hospital-based and community-based specialist palliative care (1 January 2010 to 30 June 2015).Participants139 556 (1502 Indigenous and 138 054 non-Indigenous) adult patients.Outcome measuresIndigenous and non-Indigenous patients were compared on (1) the risk of a phase being categorised as unstable, (2) the duration of unstable phases, and (3) the risk of unstable phases being prolonged (>3 days). Crude and adjusted estimates were produced from three-level robust Poisson regression and complementary log-log discrete time survival models.ResultsUnstable phases occurred with similar frequency overall among Indigenous and non-Indigenous patients (adjusted relative risks 1.06; 95% CI 1.00 to 1.11; not significant after correction for multiple comparisons). The duration and risk of prolongation of unstable phases were similar in both patient groups, with no significant differences evident among subgroups. The benchmark was not met for either Indigenous or non-Indigenous patients (unstable phase duration >3 days in 24.3% vs 25.5%; p=0.398).ConclusionsDespite well-documented shortcomings of healthcare for Indigenous Australians, there is no clear evidence of greater occurrence or prolongation of unanticipated problems among Indigenous patients accessing specialist palliative care services in hospital or the community.

scholarly journals Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data

2021 ◽  
pp. 026921632110633
Author(s):  
Joanne Bayly ◽  
Andy Bradshaw ◽  
Lucy Fettes ◽  
Muhammed Omarjee ◽  
Helena Talbot-Rice ◽  
...  
Keyword(s):  
Palliative Care ◽  
Online Survey ◽  
Rehabilitation Services ◽  
Free Text ◽  
Specialist Palliative Care ◽  
Advanced Illness ◽  
Cross Sectional ◽  
Care Services ◽  
Palliative Care Services ◽  
The Impact

Background: Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients’ symptom self-management, independence and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic. Aim: To understand rehabilitation provision in palliative care services during the Covid-19 pandemic, identifying and reflecting on adaptative and innovative practice to inform ongoing provision. Design: Cross-sectional national online survey. Setting/participants: Rehabilitation leads for specialist palliative care services across hospice, hospital, or community settings, conducted from 30/07/20 to 21/09/2020. Findings: 61 completed responses (England, n = 55; Scotland, n = 4; Wales, n = 1; and Northern Ireland, n = 1) most frequently from services based in hospices (56/61, 92%) providing adult rehabilitation. Most services (55/61, 90%) reported rehabilitation provision becoming remote during Covid-19 and half reported reduced caseloads. Rehabilitation teams frequently had staff members on sick-leave with suspected/confirmed Covid-19 (27/61, 44%), redeployed to other services/organisations (25/61, 41%) or furloughed (15/61, 26%). Free text responses were constructed into four themes: (i) fluctuating shared spaces; (ii) remote and digitised rehabilitation offer; (iii) capacity to provide and participate in rehabilitation; (iv) Covid-19 as a springboard for positive change. These represent how rehabilitation services contracted, reconfigured, and were redirected to more remote modes of delivery, and how this affected the capacity of clinicians and patients to participate in rehabilitation. Conclusion: This study demonstrates how changes in provision of rehabilitation during the pandemic could act as a springboard for positive changes. Hybrid models of rehabilitation have the potential to expand the equity of access and reach of rehabilitation within specialist palliative care.

scholarly journals Specialist palliative care teams and characteristics related to referral rate: a national cross-sectional survey among hospitals in the Netherlands

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
M.S. Boddaert ◽  
A. Stoppelenburg ◽  
J. Hasselaar ◽  
Y.M. van der Linden ◽  
K.C.P. Vissers ◽  
...  
Keyword(s):  
Palliative Care ◽  
The Netherlands ◽  
Referral Rate ◽  
Outpatient Clinics ◽  
Specialist Palliative Care ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Referral Rates ◽  
Palliative Care Teams ◽  
Education Participation

Abstract Background Specialist palliative care teams (SPCTs) in hospitals improve quality of life and satisfaction with care for patients with advanced disease. However, referrals to SPCTs are often limited. To identify areas for improvement of SPCTs’ service penetration, we explored the characteristics and level of integration of palliative care programmes and SPCTs in Dutch hospitals and we assessed the relation between these characteristics and specialist palliative care referral rates. Methods We performed a secondary analysis of a national cross-sectional survey conducted among hospitals in the Netherlands from March through May 2018. For this survey, a previously developed online questionnaire, containing 6 consensus-based integration indicators, was sent to palliative care programme leaders in all 78 hospitals. For referral rate we calculated the number of annual inpatient referrals to the SPCT as a percentage of the number of total annual hospital admissions. Referral rate was dichotomized into high (≥ third quartile) and low (< third quartile). Characteristics of SPCTs with high and low referral rate were compared using univariate analyses. P-values < 0.05 were considered significant. Results In total, 63 hospitals (81%) participated in the survey, of which 62 had an operational SPCT. The palliative care programmes of these hospitals consisted of inpatient consultation services (94%), interdisciplinary staffing (61%), outpatient clinics (45%), dedicated acute care beds (21%) and community-based palliative care (27%). The median referral rate was 0.56% (IQR 0.23–1.0%), ranging from 0 to 3.7%. Comparing SPCTs with high referral rate (≥1%, n = 17) and low referral rate (< 1%, n = 45) showed significant differences for SPCTs’ years of existence, staffing, their level of education, participation in other departments’ team meetings, provision of education and conducting research. With regard to integration, significant differences were found for the presence of outpatient clinics and timing of referrals. Conclusion In the Netherlands, palliative care programmes and specialist palliative care teams in hospitals vary in their level of integration and development, with more mature teams showing higher referral rates. Appropriate staffing, dedicated outpatient clinics, education and research appear means to improve service penetration and timing of referral for patients with advanced diseases.

scholarly journals Need for additional professional psychosocial and spiritual support in patients with advanced diseases in the course of specialist palliative care – a longitudinal observational study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Anneke Ullrich ◽  
Holger Schulz ◽  
Sven Goldbach ◽  
Wiebke Hollburg ◽  
Annette Rommel ◽  
...  
Keyword(s):  
Palliative Care ◽  
Linear Regression Analysis ◽  
Symptom Burden ◽  
Support Needs ◽  
Spiritual Support ◽  
Specialist Palliative Care ◽  
Cross Sectional ◽  
Physical Burden ◽  
The Impact ◽  
Over Time

Abstract Background We investigated the need for additional professional support and associated factors in patients (pts) at initiation and in the course of in- and outpatient specialist palliative care (I-SPC/O-SPC). Methods Pts entering an urban SPC network consecutively completed questionnaires on psychosocial/spiritual problems and support needs within 72 h (T0) as well as within the first 6 weeks (T1) of SPC. Hierarchical linear regression analysis was used to investigate the impact of sociodemographic / disease-related variables, psychological / physical burden, social support, and SPC setting on the extent of support needs. Results Four hundred twenty-five pts (70 years, 48% female, 91% cancer, 67% O-SPC) answered at T0, and 167 at T1. At T0, main problems related to transportation, usual activities, and dependency (83–89%). At T1, most prevalent problems also related to transportation and usual activities and additionally to light housework (82–86%). At T0, support needs were highest for transportation, light housework, and usual activities (35–41%). Cross-sectional comparisons of SPC settings revealed higher problem scores in O-SPC compared to I-SPC at T0 (p = .039), but not at T1. Support need scores were higher in O-SPC at T0 (p < .001), but lower at T1 (p = .039). Longitudinal analyses showed a decrease of support need scores over time, independent from the SPC setting. At T0, higher distress (p = .047), anxiety/depression (p < .001), physical symptom burden (p < .001) and I-SPC (p < .001) were associated with higher support need scores (at T1: only higher distress, p = .037). Conclusion Need for additional professional psychosocial/spiritual support was identified in up to 40% of pts. with higher need at the beginning of O-SPC than of I-SPC. During SPC, this need decreased in both settings, but got lower in O-SPC than in I-SPC over time. Support need scores were not only associated with psychological, but also physical burden.

Need for additional professional psychosocial and spiritual support in patients with advanced diseases in the course of specialist palliative care – a longitudinal observational study

2021 ◽  
Author(s):  
Anneke Ullrich ◽  
Holger Schulz ◽  
Sven Goldbach ◽  
Wiebke Hollburg ◽  
Annette Rommel ◽  
...  
Keyword(s):  
Palliative Care ◽  
Linear Regression Analysis ◽  
Spiritual Support ◽  
Specialist Palliative Care ◽  
Cross Sectional ◽  
Physical Burden ◽  
Anxiety Depression ◽  
The Impact ◽  
Spiritual Problems ◽  
Over Time

Abstract Background: We investigated the need for additional professional support and influencing factors in patients (pts) at initiation and in the course of in- and outpatient specialist palliative care (I-SPC/O-SPC). Methods: Pts entering an urban SPC network consecutively completed questionnaires on psychosocial/spiritual problems and support needs within 72 hours (T0) and within the first 6 weeks (T1) of SPC. Hierarchical linear regression analysis investigated the impact of sociodemographic / clinical variables, psychological / physical burden, social support, and SPC setting on support need. Results: 425 pts (70 years, 48% female, 91% cancer, 67% O-SPC) answered T0, and 167 T1. At T0, main problems were related to transportation, usual activities, and dependency (83-89%). At T1, most prevalent problems were again related to transportation, usual activities, and additionally light housework (82-86%). At T0, support need was highest for transportation, light housework, and usual activities (35-41%). Cross-sectional comparisons of SPC settings revealed higher problem scores in O-SPC at T0 (p=.039), but not at T1. Support need was higher in O-SPC at T0 (p<.001), but lower at T1 (p=.039). Longitudinal analyses showed a decrease of support need scores over time, independent from the SPC setting. At T0, higher distress (p=.047), anxiety/depression (p<.001), physical burden (p<.001) and I-SPC (p<.001), were associated with higher support need scores (at T1 only higher distress; p=.037).Conclusion: Need for additional professional psychosocial/spiritual support was identified in up to 40% of pts with higher need at the beginning of OSPC than of ISPC. During SPC, this need decreased in both settings, but got lower in OSPC than in ISPC over time. Psychosocial/spiritual support need was associated with not only with psychological, but also physical burden.

scholarly journals Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data.

2021 ◽  
Author(s):  
Jo Bayly ◽  
Andy Bradshaw ◽  
Lucy Fettes ◽  
Muhammed Omarjee ◽  
Helena Talbot-Rice ◽  
...  
Keyword(s):  
Palliative Care ◽  
Online Survey ◽  
Rehabilitation Services ◽  
Free Text ◽  
Specialist Palliative Care ◽  
Advanced Illness ◽  
Cross Sectional ◽  
Care Services ◽  
Palliative Care Services ◽  
The Impact

Abstract Background: Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients symptom self-management, independence, and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic. Aim: To understand rehabilitation provision in palliative care services during the Covid-19 pandemic, identifying and reflecting on adaptative and innovative practice to inform ongoing provision. Design: Cross-sectional national online survey. Setting/participants: Rehabilitation leads for specialist palliative care services across hospice, hospital, or community settings, conducted from 30/07/20 to 21/09/2020. Findings: 61 completed responses (England, n=55; Scotland, n=4; Wales, n=1; and Northern Ireland, n=1) most frequently from services based in hospices (56/61, 92%) providing adult rehabilitation. Most services (55/61, 90%) reported rehabilitation provision becoming remote during Covid-19 and half reported reduced caseloads. Rehabilitation teams frequently had staff members on sick-leave with suspected/confirmed Covid-19 (27/61, 44%), redeployed to other services/organisations (25/61, 41%) or furloughed (15/61, 26%). Free text responses were constructed into four themes: (i) fluctuating shared spaces; (ii) remote and digitised rehabilitation offer; (iii) capacity to provide and participate in rehabilitation; (iv) Covid-19 as a springboard for positive change. These represent how rehabilitation services contracted, reconfigured, and were redirected to more remote modes of delivery, and how this affected the capacity of clinicians and patients to participate in rehabilitation. Conclusion: This study demonstrates how changes in provision of rehabilitation during the pandemic could act as a springboard for positive changes. Hybrid models of rehabilitation have the potential to expand the equity of access and reach of rehabilitation within specialist palliative care.

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