Assessment of Palliative Care Needs among People Living with HIV/ AIDS Attending Antiretroviral Therapy Outpatient Department in an Urban Slum of Mumbai: A Mixed Method Study

Objectives: According to WHO, Palliative care is an essential component of a comprehensive package of care for people living with HIV/AIDS. Lack of palliative care results in untreated symptoms that hamper an individual’s ability to perform daily activities. The study aimed to explore the perceived Palliative care needs of People Living With HIV/AIDS and the association between socio- demographic profile with Palliative care needs. Materials and Methods: It was a mixed method study conducted over 2 months in November and December 2020 at Link ART OPD of Urban Health Training Centre in Mumbai. Out of 120 registered patients,15 patients were selected for in-depth interview by purposive sampling. The remaining 105 patients were selected for quantitative part of the study by complete enumeration method. For Qualitative part, Thematic analysis of the transcripts was done. Data were coded using Microsoft word comment feature. Themes and categories were drawn from it. For Quantitative part, Data analysis was done using SPSS version 22. Chi- square test was applied to find out the association between socio- demographic profile & palliative care needs. P value < 0.05 was considered statistically significant. Results: The major themes identified were poor attitude towards the disease, lack of support and role of counselling. The common palliative care needs identified were need for financial assistance, family support and psychological support. Conclusions: Palliative care should be introduced early in the care process by a team of providers who is aware of the patient’s history and requirements.

What to consider when implementing a tool for timely recognition of palliative care needs in heart failure: a context-based qualitative study

Background Needs assessment tools can facilitate healthcare professionals in timely recognition of palliative care needs. Despite the increased attention for implementation of such tools, most studies provide little or no attention to the context of implementation. The aim of this study was to explore factors that contribute positively and negatively to timely screening of palliative care needs in advanced chronic heart failure. Methods Qualitative study using individual interviews and focus groups with healthcare professionals. The data were analysed using a deductive approach. The Consolidated Framework for Implementation Research was used to conceptualise the contextual factors. Results Twenty nine healthcare professionals with different backgrounds and working in heart failure care in the Southern and Eastern parts of the Netherlands participated. Several factors were perceived to play a role, such as perception and knowledge about palliative care, awareness of palliative care needs in advanced chronic heart failure, perceived difficulty when and how to start palliative care, limited acceptance to treatment boundaries in cardiology, limited communication and collaboration between healthcare professionals, and need for education and increased attention for palliative care in advanced chronic heart failure guidelines. Conclusions This study clarified critical factors targeting patients, healthcare professionals, organisations to implement a needs assessment tool for timely recognition of palliative care needs in the context of advanced chronic heart failure. A multifaceted implementation strategy is needed which has attention for education, patient empowerment, interdisciplinary collaboration, identification of local champions, chronic heart failure specific guidelines and culture.

Palliative care needs and experiences of people in prison: A systematic review and meta-synthesis

Background: Globally, the prison population is growing and ageing, as is the need for palliative care. Yet, little is known about how people in prison perceive palliative care provision in this setting. Aims: To identify the: (i) perceptions of palliative care provision and dying in custody by people in prison; and (ii) perceived barriers and facilitators of person-centred palliative care provision in prison. Design: A systematic review and meta-synthesis was registered and undertaken in accordance with the reporting guidelines. Data Sources: Keywords and MeSH headings encompassing (i) palliative care, end-of-life care, death; and (ii) prison; were used to search Pubmed, Medline, CINAHL, PsycINFO, Web of Science, CINCH and ProQuest Central. Articles published in English, from high income countries, and containing qualitative data exploring perceptions of people in prison of palliative care in custody were included. Findings were reporting using the ENTREQ guidelines. Findings: Of the 2193 articles identified, 12 were included. Experiences of people in prison regarding palliative care related to two themes: (1) expectations versus experiences of palliative care; and (2) prison context complicates access to and provision of palliative care. People in prison with palliative care needs want to feel safe, cared for, and acknowledged as they face an expected death. The prison environment can severely restrict access to palliative care, leaving people in prison feeling isolated and powerless. Conclusions: People in prison expect to receive high-quality palliative care, but their experiences often do not match their expectations. Numerous structural and organisational challenges complicate the provision of palliative care in prisons, limiting accessibility of care.

The lived experience of patients suffering from stroke and their perception of palliative care needs: a literature review

Purpose This study aims to review the lived experience of patients suffering from stroke and describe their perception of palliative care needs. Design/methodology/approach A literature review search was conducted. Web of Sciences, SAGE, CINAHL, PubMed and Jordanian Database for Nursing Research databases were used to search the literature. Findings The findings of 37 articles were address palliative care approaches for patients with stroke, lived experiences of patients suffering from stroke and the experience, barriers and facilitators related to health-care service for stroke survivors. Originality/value This review indicated the importance of recognizing palliative care needs among patients suffering from stroke to improve post-stroke recovery. This study recommends further research, especially in low- and middle-income countries, to understand patients’ experiences and recognize the main palliative care needs that can be incorporated into interventions designed to improve the quality of life among them.

Co-Design of an Evidenced Informed Service Model of Integrated Palliative Care for Persons Living with Severe Mental Illness: A Qualitative Exploratory Study

Background: Globally, close to one billion people are living with a mental health disorder, and it is one of the most neglected areas in Public Health. People with severe mental illness have greater mortality risk than the general population, experience health care inequalities throughout life and represent a vulnerable, under-served and under-treated population, who have been overlooked in health inequality research to date. There is currently a dearth of evidence in relation to understanding the palliative care needs of people with severe mental illness and how future care delivery can be designed to both recognise and respond to those needs. This study aims to co-design an evidenced informed service model of integrated palliative care for persons living with a severe mental illness. Methods: This qualitative sequential study underpinned by interpretivism will have six phases. An expert reference group will be established in Phase 1, to inform all stages of this study. Phase 2 will include a systematic literature review to synthesise current evidence in relation to palliative care service provision for people with severe mental illness. In Phase 3, qualitative interviews will be undertaken with both, patients who have a severe mental illness and in receipt of palliative care (n = 13), and bereaved caregivers of people who have died 6–18 months previously with a diagnosis of severe mental illness (n = 13), across two recruitment sties in the United Kingdom. Focus groups (n = 4) with both mental health and palliative care multidisciplinary staff will be undertaken across the two recruitment sites in Phase 4. Phase 5 will involve the co-design of a service model of integrated palliative care for persons living with severe mental illness. Phase 6 will develop practice recommendations for this client cohort. Discussion: Palliative care needs to be available at all levels of care systems; it is estimated that, globally, only 14% of patients who need palliative care receive it. Reducing inequalities experienced by people with severe mental illness is embedded in the National Health Service Long Term Plan. Internationally, the gap between those with a mental illness needing care and those with access to care remains considerable. Future policy and practice will benefit from a better understanding of the needs of this client cohort and the development of a co-designed integrated care pathway to facilitate timely access to palliative care for people with a severe mental illness.

Examining the Range and Scope of Artists’ Professional Practices With Individuals With Palliative Care Needs: An International, Cross-Sectional Online Survey

Background: Internationally, it is recognized that artists facilitate arts engagement with individuals with palliative care needs. There is a gap in the literature describing the range and scope of artists’ professional practices in palliative care. The aim of this study was to examine an international range of professional practices among artists who work in palliative care including key professionals’ perceptions of these practices.Methods: An international, cross-sectional, online survey was conducted with health professionals, artists, and program coordinators with experience with artists working in palliative care. This survey was part of a larger mixed methods study. An instrument was systematically developed to examine artists’ professional practices. Descriptive statistics were reported for the total sample including frequencies, means and standard deviations and open-ended items were analyzed thematically.Results: 101 valid surveys were analyzed. Findings outlined: (1) who delivers the arts; (2) where and with whom; (3) practice descriptors; and (4) perceptions of practice. Themes identified from open-ended items on benefits and risks of practice revealed impacts on patients and artists alike, including: (1) enhanced well-being; (2) vulnerabilities; and (3) facilitators and barriers.Conclusion: Findings demonstrated a wide range of artists’ practices in palliative and end-of-life care, featuring notable consistencies in international practice worth further exploration. Ongoing and international efforts examining artists’ practices in palliative care contribute to the development of future research, policy and practice.

Pulmonary referrals to specialist palliative medicine: a survey

ObjectivesPatients with chronic respiratory disease have significant palliative care needs, but low utilisation of specialist palliative care (SPC) services. Decreased access to SPC results in unmet palliative care needs among this patient population. We sought to determine the referral practices to SPC among respirologists in Canada.MethodsRespirologists across Canada were invited to participate in a survey about their referral practices to SPC. Associations between referral practices and demographic, professional and attitudinal factors were analysed using regression analyses.ResultsThe response rate was 64.7% (438/677). Fifty-nine per cent of respondents believed that their patients have negative perceptions of palliative care and 39% were more likely to refer to SPC earlier if it was renamed supportive care. While only 2.7% never referred to SPC, referral was late in 52.6% of referring physicians. Lower frequency of referral was associated with equating palliative care to end-of-life care (p<0.001), male sex of respirologist (p=0.019), not knowing referral criteria of SPC services (p=0.015) and agreement that SPC services prioritise patients with cancer (p=0.025); higher referral frequency was associated with satisfaction with SPC services (p=0.001). Late referral was associated with equating palliative care to end-of-life care (p<0.001) and agreement that SPC services prioritise patients with cancer (p=0.013).ConclusionsPossible barriers to respirologists’ timely SPC referral include misperceptions about palliative care, lack of awareness of referral criteria and the belief that SPC services prioritise patients with cancer. Future studies should confirm these barriers and evaluate the effectiveness of strategies to overcome them.

Family physicians supporting patients with palliative care needs within the patient medical home in the community: an appreciative inquiry study

ObjectivesCanadians want to live and die in their home communities. Unfortunately, Canada has the highest proportion of deaths in acute care facilities as compared with other developed nations. This study aims to identify the essential components required to best support patients and families with palliative care needs in their communities to inform system changes and empower family physicians (FPs) in providing community-based palliative care for patients.DesignAppreciative inquiry (AI) methodology with individual interviews. Interview transcripts were analysed iteratively for emerging themes and used to develop ‘possibility statements’ to frame discussion in subsequent focus groups. A conceptual framework emerged to describe the ‘destiny’ state as per AI methods.SettingFPs, palliative home care providers, patients and bereaved caregivers were recruited in the urban and surrounding rural health authority zones of Calgary, AB, Canada.Participants9 females and 9 males FPs (range of practice years 2–42) in interviews; 8 bereaved caregivers, 1 patient, 26 palliative home care team members in focus groups. Interviews and focus groups were recorded digitally and transcribed with consent.ResultsThe identified themes that transcended all three groups created the foundation for the conceptual framework. Enhanced communication and fostering team relationships between all care providers with the focus on the patient and caregivers was the cornerstone concept. The FP/patient relationship must be protected and encouraged by all care providers, while more system flexibility is needed to respond more effectively to patients. These concepts must exist in the context that patients and caregivers need more education regarding the benefits of palliative care, while increasing public discourse about mortality.ConclusionsKey areas were identified for how the patient’s team can work together effectively to improve the patient and caregiver palliative care journey in the community with the cornerstone element of building on the trusting FP–patient longitudinal relationship.

Primary palliative care. Caring for patients with life-limiting illness in the community

The 9th October 2021, was World Palliative Care Day. This year’s theme for world palliative care is “Leave No One Behind – Equity in Access to Palliative Care”. Evidence for the outcomes of early palliative care is growing. In 2014, the World Health Assembly passed a resolution that was co-sponsored by Malaysia. The resolution called for countries to improve access to palliative care as a core component of health systems, with an emphasis on primary health care and community/home-based care. One study conducted in Malaysia in 2019 estimated that by 2030, with the increase in noncommunicable diseases, 246 000 patients would require palliative care. For Malaysia to achieve equity in access to palliative care, care for these patients must be integrated into primary care. This article discusses some of the tools available for early identification of patients assessment and management of patients with palliative care needs