A qualitative evaluation of the impact of palliative care day services: the experiences of patients, informal carers, day unit managers and volunteer staff

2005 ◽  
Vol 19 (1) ◽  
pp. 65-70 ◽  
Author(s):  
Joe Low ◽  
Rachel Perry ◽  
Susie Wilkinson
Keyword(s):  
Palliative Care ◽  
Qualitative Evaluation ◽  
Informal Carers ◽  
Day Services ◽  
The Impact

scholarly journals Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare

2020 ◽  
pp. 026921632096649
Author(s):  
Kristin Bindley ◽  
Joanne Lewis ◽  
Joanne Travaglia ◽  
Michelle DiGiacomo
Keyword(s):  
Palliative Care ◽  
Social Welfare ◽  
End Of Life ◽  
Financial Burden ◽  
Qualitative Interviews ◽  
Housing Assistance ◽  
Structural Determinants ◽  
Psychosocial Sequelae ◽  
Framework Approach ◽  
Informal Carers

Background: Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life. Aim: To explore ways in which palliative care and welfare sector workers perceive and approach experiences and needs of the carers of people with life-limiting illnesses who receive government income support or housing assistance, in an area of recognised socioeconomic disadvantage. Design: An interpretive descriptive study employed in-depth, qualitative interviews to explore participants’ reflections on working with carers of someone with a life-limiting illness. Data were analysed using the framework approach. Setting/participants: Twenty-one workers employed within three public services in Western Sydney were recruited. Results: Workers articulated understandings of welfare policy and its consequences for carers at end-of-life, including precariousness in relation to financial and housing circumstances. Identified resources and barriers to the navigation of social welfare needs by carers were categorised as personal, interpersonal and structural. Conclusions: Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life.

scholarly journals Exploring the Relationship between Biologics and Postoperative Surgical Morbidity in Ulcerative Colitis: A Review

2021 ◽  
Vol 10 (4) ◽  
pp. 710
Author(s):  
Abel Botelho Quaresma ◽  
Fernanda da Silva Barbosa Baraúna ◽  
Fábio Vieira Teixeira ◽  
Rogério Saad-Hossne ◽  
Paulo Gustavo Kotze
Keyword(s):  
Ulcerative Colitis ◽  
Postoperative Complications ◽  
Meta Analysis ◽  
Qualitative Evaluation ◽  
Complication Rates ◽  
Surgical Morbidity ◽  
Randomized Studies ◽  
Pubmed Database ◽  
Increased Risk ◽  
The Impact

Background: With the paradigm shift related to the overspread use of biological agents in the treatment of inflammatory bowel diseases (IBD), several questions emerged from the surgical perspective. Whether the use of biologicals would be associated with higher rates of postoperative complications in ulcerative colitis (UC) patients still remains controversial. Aims: We aimed to analyze the literature, searching for studies that correlated postoperative complications and preoperative exposure to biologics in UC patients, and synthesize these data qualitatively in order to check the possible impact of biologics on postoperative surgical morbidity in this population. Methods: Included studies were identified by electronic search in the PUBMED database according to the PRISMA (Preferred Items of Reports for Systematic Reviews and Meta-Analysis) guidelines. The quality and bias assessments were performed by MINORS (methodological index for non-randomized studies) criteria for non-randomized studies. Results: 608 studies were initially identified, 22 of which were selected for qualitative evaluation. From those, 19 studies (17 retrospective and two prospective) included preoperative anti-TNF. Seven described an increased risk of postoperative complications, and 12 showed no significant increase postoperative morbidity. Only three studies included surgical UC patients with previous use of vedolizumab, two retrospective and one prospective, all with no significant correlation between the drug and an increase in postoperative complication rates. Conclusions: Despite conflicting results, most studies have not shown increased complication rates after abdominal surgical procedures in patients with UC with preoperative exposure to biologics. Further prospective studies are needed to better establish the impact of preoperative biologics and surgical complications in UC.

scholarly journals Improving the experience of facility-based delivery for vulnerable women through obstetric care navigation: a qualitative evaluation

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Kirsten Austad ◽  
Michel Juarez ◽  
Hannah Shryer ◽  
Patricia L. Hibberd ◽  
Mari-Lynn Drainoni ◽  
...  
Keyword(s):  
Health Workers ◽  
Positive Impact ◽  
Qualitative Evaluation ◽  
Obstetric Care ◽  
Hospital Staff ◽  
Public Hospitals ◽  
Future Research ◽  
Care Seeking ◽  
Structured Interviews ◽  
The Impact

Abstract Background Global disparities in maternal mortality could be reduced by universal facility delivery. Yet, deficiencies in the quality of care prevent some mothers from seeking facility-based obstetric care. Obstetric care navigators (OCNs) are a new form of lay health workers that combine elements of continuous labor support and care navigation to promote obstetric referrals. Here we report qualitative results from the pilot OCN project implemented in Indigenous villages in the Guatemalan central highlands. Methods We conducted semi-structured interviews with 17 mothers who received OCN accompaniment and 13 staff—namely physicians, nurses, and social workers—of the main public hospital in the pilot’s catchment area (Chimaltenango). Interviews queried OCN’s impact on patient and hospital staff experience and understanding of intended OCN roles. Audiorecorded interviews were transcribed, coded, and underwent content analysis. Results Maternal fear of surgical intervention, disrespectful and abusive treatment, and linguistic barriers were principal deterrents of care seeking. Physicians and nurses reported cultural barriers, opposition from family, and inadequate hospital resources as challenges to providing care to Indigenous mothers. Patient and hospital staff identified four valuable services offered by OCNs: emotional support, patient advocacy, facilitation of patient-provider communication, and care coordination. While patients and most physicians felt that OCNs had an overwhelmingly positive impact, nurses felt their effort would be better directed toward traditional nursing tasks. Conclusions Many barriers to maternity care exist for Indigenous mothers in Guatemala. OCNs can improve mothers’ experiences in public hospitals and reduce limitations faced by providers. However, broader buy-in from hospital staff—especially nurses—appears critical to program success. Future research should focus on measuring the impact of obstetric care navigation on key clinical outcomes (cesarean delivery) and mothers’ future care seeking behavior.

scholarly journals Physicians’ decreased tendency to choose palliative care for patients with advanced dementia between 1999 and 2015

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Saila Haapasalmi ◽  
Reetta P. Piili ◽  
Riina Metsänoja ◽  
Pirkko-Liisa I. Kellokumpu-Lehtinen ◽  
Juho T. Lehto
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Legal Protection ◽  
Postal Survey ◽  
Advanced Dementia ◽  
Background Factors ◽  
Physician Decision Making ◽  
Care Approach ◽  
Life Threatening ◽  
The Impact

Abstract Background Physicians’ decision-making for seriously ill patients with advanced dementia is of high importance, especially as the prevalence of dementia is rising rapidly, and includes many challenging ethical, medical and juridical aspects. We assessed the change in this decision-making over 16 years (from 1999 to 2015) and several background factors influencing physicians’ decision. Methods A postal survey including a hypothetical patient-scenario representing a patient with an advanced dementia and a life-threatening gastrointestinal bleeding was sent to 1182 and 1258 Finnish physicians in 1999 and 2015, respectively. The target groups were general practitioners (GPs), surgeons, internists and oncologists. The respondents were asked to choose between several life-prolonging and palliative care approaches. The influence of physicians’ background factors and attitudes on their decision were assessed. Results The response rate was 56%. A palliative care approach was chosen by 57 and 50% of the physicians in 1999 and 2015, respectively (p = 0.01). This change was statistically significant among GPs (50 vs 40%, p = 0.018) and oncologists (77 vs 56%, p = 0.011). GPs chose a palliative care approach less often than other responders in both years (50 vs. 63% in 1999 and 40 vs. 56% in 2015, p < 0.001). In logistic regression analysis, responding in 2015 and being a GP remained explanatory factors for a lower tendency to choose palliative care. The impact of family’s benefit on the decision-making decreased, whereas the influence of the patient’s benefit and ethical values as well as the patient’s or physician’s legal protection increased from 1999 to 2015. Conclusions Physicians chose a palliative care approach for a patient with advanced dementia and life-threatening bleeding less often in 2015 than in 1999. Specialty, attitudes and other background factors influenced significantly physician decision-making. Education on the identification and palliative care of the patients with late-stage dementia are needed to make these decisions more consistent.

scholarly journals A qualitative study of organisational response to national quality standards for 7-day services in English hospitals

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Elizabeth Sutton ◽  
Julian Bion ◽  
Russell Mannion ◽  
Janet Willars ◽  
Elizabeth Shaw ◽  
...  
Keyword(s):  
Organisational Culture ◽  
National Standards ◽  
Local Context ◽  
Structured Interviews ◽  
Improvement Strategy ◽  
Senior Staff ◽  
National Quality ◽  
History Of ◽  
Day Services ◽  
The Impact

Abstract Background National standards are commonly used as an improvement strategy in healthcare, but organisations may respond in diverse and sometimes negative ways to external quality demands. This paper describes how a sample of NHS hospital trusts in England responded to the introduction of national standards for 7-day services (7DS), from an organisational behaviour perspective. Methods We conducted 43 semi-structured interviews with executive/director level and clinical staff, in eight NHS trusts that varied in size, location, and levels of specialist staffing at weekends. We explored approaches to implementing standards locally, and the impact of organisational culture and local context on organisational response. Results Senior staff in the majority of trusts described a focus on hitting targets and achieving compliance with the standards. Compliance-based responses were associated with a hierarchical organisational culture and focus on external performance. In a minority of trusts senior staff described mobilising commitment-based strategies. In these trusts senior staff reframed the external standards in terms of organisational values, and used co-operative strategies for achieving change. Trusts that took a commitment-based approach tended to be described as having a developmental organisational culture and a history of higher performance across the board. Audit data on 7DS showed improvement against standards for most trusts, but commitment-focused trusts were less likely to demonstrate improvements on the 7DS audit. The ability of trusts to respond to external standards was limited when they were under pressure due to a history of overall poor performance or resource limitations. Conclusions National standards and audit for service-level improvement generate different types of response in different local settings. Approaches to driving improvement nationally need to be accompanied by resources and tailored support for improvement, taking into account local context and organisational culture.

scholarly journals 523. COVID-19 Preparedness in Hospice and Palliative Care

2020 ◽  
Vol 7 (Supplement_1) ◽  
pp. S328-S328
Author(s):  
Monika Pogorzelska-Maziarz ◽  
Jeannette Kates ◽  
Jingjing Shang ◽  
Angela M Gerolamo
Keyword(s):  
Palliative Care ◽  
Hospice Care ◽  
Group Discussion ◽  
Discussion Board ◽  
Community Group ◽  
Care Community ◽  
Care Services ◽  
Do It Yourself ◽  
Hospice And Palliative Care ◽  
The Impact

Abstract Background Due to the emergence of COVID-19 and resulting pandemic, there is an increased demand for palliative care and hospice care services. However, the impact of COVID-19 on the hospice and palliative agencies is unknown. Methods An electronic survey was disseminated via the Hospice & Palliative Nurses Association newsletter, posted to the Sigma Theta Tau Hospice and Palliative Care Community Group discussion board and advertised through social media from May 7–28, 2020. Summary statistics were computed. Results We collected 36 surveys representing all U.S. regions. Most respondents (78%) reported that their agency has cared for confirmed COVID-19 patients. Only half of agencies had access to laboratory facilities for surveillance and detection of the presence of outbreaks in both patients and staff (58%) and the ability to test patients and providers for COVID-19 (55%). Due to COVID-19, participants stated that the agency added new protocols regarding aerosol-generating procedures policies (58%), use of surface barriers (61%) and PPE usage (e.g. donning and doffing) in patient homes (56%). The majority (76%) reported that their agency required field clinicians to call ahead to ascertain COVID-19 exposure/symptoms before a home visit. More than half (58%) reported that their agency lacked supplies, including N95 respirators (45%), cleaning/disinfectant product (23%), alcohol based sanitizer (18%), eye protection (18%), gowns (18%), and surgical masks (14%). Overall, participants shared that field clinicians had to reuse (76%), extend (73%) or ration (30%) PPE supplies. Respondents reported that their agency accessed supplemental PPE through state/local resources (67%), private/community donations (67%), and do-it-yourself efforts (55%). One third (31%) reported that their agency was experiencing staffing shortages due to COVID-19; of these, 60% reported that shortages were due to staff infected with/quarantined due to COVID-19. Conclusion Our findings suggest that COVID-19 has presented significant challenges for palliative care and hospice agencies as they provide care to patients and families at an unprecedented rate. Disclosures All Authors: No reported disclosures

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