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 Changes in health and functioning of care home residents over two decades: what can we learn from population based studies?

2020 ◽  
Author(s):  
Robert O Barker ◽  
Barbara Hanratty ◽  
Andrew Kingston ◽  
Sheena Ramsay ◽  
Fiona E Matthews
Keyword(s):  
Care Home ◽  
Population Based ◽  
Severe Disability ◽  
Support Needs ◽  
Cross Sectional ◽  
England And Wales ◽  
Care Home Staff ◽  
Using Data ◽  
The Impact ◽  
Over Time

Background Care home residents have complex care and support needs, as demonstrated by their vulnerability during the COVID-19 pandemic. There is a perception that the needs of residents have increased, but evidence is limited. We investigated changes in health and functioning of care home residents over two decades in England and Wales. Methods We conducted a repeated cross-sectional analysis over a 24-year period (1992-2016), using data from three longitudinal studies, the Cognitive Function and Ageing Studies (CFAS) I and II and English Longitudinal Study of Ageing (ELSA). To adjust for ageing of respondents over time results are presented for the 75-84 age group. Results Analysis of 2,280 observations from 1,745 care home residents demonstrated increases in severe disability (difficulty in at least two from washing, dressing and toileting). The prevalence of severe disability increased from 63% in 1992 to 87% in 2014 (subsequent fall in 2016 although wide confidence intervals). The prevalence of complex multimorbidity (problems in at least three out of six body systems) increased within studies over time, from 33% to 54% in CFAS I/II between 1992 and 2012, and 26% to 54% in ELSA between 2006 and 2016. Conclusion Over two decades, there has been an increase in disability and the complexity of health problems amongst care home residents in England and Wales. A rise in support needs for residents places increasing demands on care home staff and health professionals. This is an important concern for policymakers when considering the impact of COVID-19 infection in care homes.

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.

What Matters Most? A Mixed Methods Study of Critical Aspects of a Home-Based Palliative Program

2017 ◽  
Vol 35 (2) ◽  
pp. 236-243 ◽  
Author(s):  
Claire K. Ankuda ◽  
Kaileen Kersting ◽  
Timothy C. Guetterman ◽  
Jessica Haefner ◽  
Evan Fonger ◽  
...  
Keyword(s):  
Palliative Care ◽  
Mixed Methods ◽  
Social Services ◽  
Functional Disability ◽  
Symptom Burden ◽  
Mixed Methods Study ◽  
Spiritual Support ◽  
Medical Monitoring ◽  
Home Based ◽  
The Impact

Background: Home-based palliative care programs have shown value in improving quality of care and lowering costs for seriously ill patients. It is unknown what specific elements of these programs matter most to patients and caregivers. Aim: To identify what services are critical and why they matter to patients in a home-based palliative program. Setting/Participants: A mixed methods study of 18 participants in the At Home Support (AHS) program in Southeast Michigan. Measurements: Two semistructured interviews were conducted for each participant, one while enrolled in AHS and another 3 months after the program ended to elicit the impact of AHS on their care. Qualitative theme data were merged with quantitative data on demographics, social and financial resources, symptoms, medical conditions, functional status, and utilization of health care while in AHS. Results: Four major themes of critical services reported by distinct populations of participants were described—medical support, endorsed by nearly every participant; emotional and spiritual support, endorsed by those with serious illness and symptom burden; practical assistance, endorsed by those with functional disability and isolation; and social services, endorsed by those in poverty. Medical monitoring was also described as critical but only by healthier participants. Conclusion: This study presents a conceptual model of the critical services in home-based palliative care and why these services are important to high-risk patients. This model may be used to guide further research and evaluation work on the benefits of home-based palliative care.

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.

scholarly journals Assessing the impact of COVID-19 on healthcare staff at a combined elderly care and specialist palliative care facility: A cross-sectional study

2021 ◽  
pp. 026921632110280
Author(s):  
Sarah Nestor ◽  
Colm O’ Tuathaigh ◽  
Tony O’ Brien
Keyword(s):  
Palliative Care ◽  
Healthcare Workers ◽  
Care Service ◽  
Elderly Care ◽  
Care Facility ◽  
Cross Sectional Study ◽  
Specialist Palliative Care ◽  
Cross Sectional ◽  
Diverse Range ◽  
The Impact

Background: In the pre-COVID-19 era, healthcare professionals experienced stress and burnout. The international literature confirms that COVID-19 placed significant additional burdens on healthcare workers. Aim: To describe and characterise the magnitude and variety of ways in which the COVID-19 pandemic affected the personal, social and professional lives of healthcare workers representing several multidisciplinary specialties in a fully-integrated palliative and elderly care service. Design: All staff were invited to complete an anonymised standardised questionnaire evaluating the impact of COVID-19 across a diverse range of domains. The study was conducted over a 6-week period commencing 11 September 2020. Setting: The setting incorporates two distinct but integrated services operating under a single management structure in Ireland: (i) Specialist palliative care across hospice (44 beds), community and hospitals and (ii) Elderly Care Service (long-term and respite care) delivered in a 63-bed inpatient unit. Results: 250 respondents (69.8%) completed the questionnaire. Nurses and healthcare assistants comprised the majority of respondents (60%) and other disciplines were represented proportionately. 230 participants (92%) agreed that their personal workload had changed significantly in response to COVID-19 and 182 (72.8%) agreed that their responsibilities had increased. 196 (78.4%) reported greater work-related stress. Highest-rated sources of stress included fear of contracting COVID-19 or transmitting it to friends/family, interacting with isolated frail/dying patients, changes to workplace protocols and reduced social interaction with colleagues. Conclusions: This study demonstrates the profound impact of COVID-19 on personal and professional wellbeing of staff. The greatest burden was carried by those providing prolonged, direct and intimate patient care.

scholarly journals How do delirium motor subtypes differ in phenomenology and contributory aetiology? a cross-sectional, multisite study of liaison psychiatry and palliative care patients

BMJ Open ◽  
2021 ◽  
Vol 11 (4) ◽  
pp. e041214
Author(s):  
Kevin Glynn ◽  
Frank McKenna ◽  
Kevin Lally ◽  
Muireann O’Donnell ◽  
Sandeep Grover ◽  
...  
Keyword(s):  
Palliative Care ◽  
Rating Scale ◽  
Symptom Burden ◽  
Systemic Infection ◽  
International Study ◽  
Cross Sectional Study ◽  
Secondary Outcome ◽  
Liaison Psychiatry ◽  
Cross Sectional ◽  
Hypoactive Delirium

ObjectivesTo investigate whether delirium motor subtypes differ in terms of phenomenology and contributory aetiology.DesignCross-sectional study.SettingInternational study incorporating data from Ireland and India across palliative care, old age liaison psychiatry and general adult liaison psychiatry settings.Participants1757 patients diagnosed with delirium using criteria from the Diagnostic and Statistical Manual of Mental Disorders, Fourth edition (DSM IV).Primary and secondary outcome measuresHyperactive, mixed and hypoactive delirium subtypes were identified using the abbreviated version of the Delirium Motor Subtype Scale. Phenomenology was assessed using the Delirium Rating Scale Revised. Contributory aetiologies were assessed using the Delirium Aetiology Checklist (DEC), with a score >2 indicating that the aetiology was likely or definitely contributory.ResultsHypoactive delirium was associated with dementia, cerebrovascular and systemic infection aetiologies (p<0.001) and had a lower overall burden of delirium symptoms than the other motor subtypes. Hyperactive delirium was associated with younger age, drug withdrawal and the DEC category other systemic aetiologies (p<0.001). Mixed delirium showed the greatest symptom burden and was more often associated with drug intoxication and metabolic disturbance (p<0.001). All three delirium motor subtypes had similar levels of impairment in attention and visuospatial functioning but differed significantly when compared with no subtype (p<0.001).ConclusionsThis study indicates a pattern of aetiology and symptomatology of delirium motor subtypes across a large international sample that had previously been lacking. It serves to improve our understanding of this complex condition and has implications in terms of early detection and management of delirium.

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.

Patient reported outcomes in patients with desmoid type fibromatosis.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 11574-11574
Author(s):  
VIKAS GARG ◽  
Sameer Rastogi ◽  
Adarsh Barwad ◽  
Rambha Panday ◽  
Sandeep Kumar Bhoriwal ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Symptom Burden ◽  
Benign Neoplasm ◽  
Anxiety And Depression ◽  
Appendicular Skeleton ◽  
Healthy Controls ◽  
Symptom Scale ◽  
Cross Sectional ◽  
Patient Reported ◽  
The Impact

11574 Background: Desmoid type fibromatosis (DTF) is a rare benign neoplasm with infiltrative growth and high local recurrences. Due to long disease course, unpredictable growth pattern, and low mortality, using only survival outcomes may be inappropriate. In this study we assessed the impact of DTF on health related quality of life (HRQoL). Methods: This was a cross-sectional study done in patients with DTF. The study participants were asked to fill the EORTC QLQ-C30, GAD-7 and PHQ- 9 q uestionnaires to assess HRQoL, anxiety and depression . Outcomes were also compared with healthy controls. Results: 204 subjects (102 DTF patients and 102 healthy controls) were recruited. Study parameters have been summarized in Table. Appendicular skeleton (limbs + girdle) was most commonly involved in 59 % patients and abdominal wall or mesentery was involved in 22.5 %. Patients have received median of 2 lines of therapy. 54 % patients were currently on sorafenib and 41 % were under active surveillance. Mean global health status in DTF patient 65.58 ± 22.64, was significantly lower than healthy controls. Similarly, DTF patients scored low on all functional scales except cognitive functioning. Symptom scale showed significantly higher symptom burden of fatigue, pain, insomnia and financial difficulties. Anxiety & depression was observed in 39.22 % and 50 % of DTF patients respectively. DTF patients had higher rates of mild, moderate and severe anxiety and depression compared to healthy controls. No difference was observed based on site of disease. Conclusions: DTF patients have significant symptom burden, poor functioning, and heightened anxiety and depression. Patient reported outcomes should be routinely used to assess treatment efficacy in DTF patients.[Table: see text]

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