Palliative Care and Social Practice最新文献

Background: In Spain, there are between 300,000 and 370,000 people with palliative care needs, and it is believed that fewer than 50% can access them. The current challenge is to combat inequities in access to palliative care resources in the rural environment through training, greater provision of material and human resources, and the involvement of health system managers.

Main objective: To determine the effectiveness of an educational community intervention on knowledge of care for nonformal caregivers in a rural area.

Design: A quasi-experimental pretest-posttest study with a control group will be conducted in Isso's primary care setting (Albacete).

Methods and analysis: The sample calculation was performed with the GRANMO program (version 8.0, 2024) with 80 caregivers. The dependent variables will be caregiver support, quality of life, and knowledge of palliative care. The IBM SPSS Statistics version 28 program will be used for statistical analysis. Instruments used were the abbreviated Zarit scale, EuroQol 5D, Goldberg, and PaCKs.

Discussion: Improving the overload in care of the main caregiver of people with palliative care, since it negatively affects health and improves the well-being of informal caregivers.

Conclusion: If schools for caregivers were implemented in other health centers or clinics accessible to the population, the empowerment of these people could be improved by reducing costs and enhancing experiences in care.

Ethics: The protocol was approved by the social research ethics committee of the University of Castilla-la Mancha with reference number CEIS-2024-21094 and by the drug research ethics committee of the Gerencia de Atención Integrada de Albacete with code No. 2024-003.

Background: Familial and social support for patients with life-limiting conditions is crucial, especially in resource-poor settings. However, limited knowledge exists about patients' and caregivers' experiences within these informal networks in such contexts.

Aims: This systematic review aimed to (i) synthesise the experiences of patients and caregivers regarding familial and social support in resource-poor settings, and (ii) understand the challenges they face in order to provide evidence for more compassionate, culturally congruent palliative care.

Design: Systematic review and meta-synthesis registered on PROSPERO (CRD42023486219).

Methods: We searched CINAHL, MEDLINE, PsycINFO, and Scopus using keywords such as "familial and social support" and "chronic debilitating conditions" in low- and middle-income countries. Only English-language qualitative studies exploring familial and social support were included. Thomas and Harden's approach was used for data synthesis, and the Joanna Briggs Institute's critical appraisal checklist was used to assess the studies' quality.

Results: We report our findings using the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. Following screening, 39 studies were retained from 9157 search results. Five key themes emerged: (1) Bearing the weight of financial strain; (2) Psychosocial support as a "lifeline" for care; (3) Hands-on help and guidance; (4) Cultural and social obligations; and (5) Developing a "thick skin" and having faith as a coping mechanism. The findings show that caregiving in the context of life-limiting illnesses is influenced by financial burdens, emotional challenges, and cultural obligations, with caregivers depending on spiritual and social networks. However, resource availability is inconsistent, underscoring the need for tailored interventions.

Conclusion: Culturally specific palliative care strategies are necessary to ease caregiver burdens, improve resource distribution, and support the well-being of patients and caregivers in resource-poor settings.

Background: Palliative care (PC), a holistic approach to care for persons living with serious illness or injury, is a crucial component of Universal Health Coverage (UHC) and Sustainable Development Goal 3. While Uganda has made commendable progress in improving PC access, the legal aspects of PC provision remain underexplored.

Objectives: Considering knowledge gaps regarding the legal aspects of PC in Uganda, this study sought to assess the legal needs and challenges faced by persons receiving PC in the country.

Design: Cross-sectional design utilizing both quantitative and qualitative methods.

Methods: The quantitative arm surveyed 384 individuals receiving PC across three study sites, comprising public and not-for-profit private healthcare institutions. Quantitative data were analyzed descriptively. The qualitative arm involved 25 key informant interviews conducted with healthcare providers, legal and human rights experts, and medicines supply chain professionals, along with four focus group discussions involving 40 individuals receiving PC at two study sites. Qualitative analysis was used to analyze the qualitative data.

Results: Both quantitative and qualitative findings revealed significant legal challenges and practical obstacles faced by persons receiving PC in Uganda. Participants reported a lack of access to high-quality PC services, including legal assistance. Legal challenges included limited awareness of patients' legal rights, the need for increased legal support in areas such as succession planning and will-making, and legal barriers associated with ensuring an adequate supply of opioids for pain management.

Conclusion: Based on findings of unmet legal needs among individuals receiving PC in Uganda, this study provides recommendations to address these needs, strategically and pragmatically maximizing patients' quality of life and well-being and advancing PC provision as part of UHC.

Trial registration: Not applicable.

Background: As a result of COVID-19 restrictions, palliative care services in New Zealand and across the world needed to adapt rapidly and creatively to find new ways of working, revising, and establishing new policies and practices. This article reports the findings of phase I of an 18-month study examining changes in hospice care delivery in Aotearoa/New Zealand in the wake of COVID-19.

Objective: This study aimed to explore the motivations underpinning adaptations and innovations in the delivery of palliative care in the wake of COVID-19.

Design: Transdisciplinary Action Research and Partnership approaches were utilised.

Method: A thematic analysis was conducted of open-ended telephone, video, and in-person questionnaire data collected from January to August 2024 from a diverse group of stakeholders. Our findings explored the motivations for health professional practice changes in the realms of competence, relationships, and autonomy.

Findings: Changes in behaviour involved streamlining and adapting policies and services, using technology to facilitate communication, building collaborative connections, and activating health professionals, families, and Indigenous empowerment.

Conclusion: Palliative care services needed to adapt rapidly and creatively to the threats posed by COVID-19. The threats posed were a motivator to shift thinking about palliative care delivery regarding services, relationships, and empowerment. This shift in thinking led to changes in ways of working, revising, and establishing new policies and practices. The driving force underpinning the changes and innovations is the desire to provide patient-centred care. Indeed, the findings build a case for patient-centred, sustainable, and effective innovation. From the perspective of health professionals, the findings may inform strategies to sustain new practices in delivering quality palliative care. Additionally, they may also provide insights into possible methods to grow individual and community capacity to face future pandemics.

Background: Medical assistance in dying ("MAiD") became legal across Canada in 2016, and in Québec in 2015. Provincial/territorial regulatory bodies play a critical role in MAiD as they can issue binding requirements on health practitioners. Law and regulatory standards are the "twin pillars" of MAiD regulation, yet the content of MAiD practice standards for physicians is unstudied.

Design: This article analysed MAiD guidance for physicians from Canadian medical regulators (often called the "College of Physicians and Surgeons"), using a qualitative descriptive approach, informed by regulatory space theory.

Methods: We identified MAiD-specific regulatory documents (practice standards and related documents) using web-based searches and follow-up inquiries. We analysed the documents using qualitative descriptive analysis and the Framework Method, facilitated by NVivo. The analysis focused on identifying areas where regulators issued guidance beyond the law.

Results: We identified 15 regulatory documents from 11 of the 13 provinces and territories. We determined that these documents primarily outline the law without detailed guidance on how to apply it. We identified eight areas for which regulators provided guidance that went beyond the MAiD-specific legislation, most relating to core aspects of medical practice, such as competency, documentation, and patient-centred care. The rights and obligations of conscientious objectors were a predominant focus in all documents. The documents largely lacked guidance about the meaning of terms in the legislation. There was also variation in standards between provinces and territories; the documents focused on similar topics but varied in their policy choices. Physicians in each province/territory are therefore subject to differing expectations (to some extent).

Conclusion: This study highlights a gap in guidance on the meaning of legal terms in the Criminal Code MAiD provisions and highlights interprovincial/territorial variability in MAiD practice standards and guidance for physicians. The study demonstrates the risks of fragmentation inherent in polycentric regulation, which can be challenging for physicians to navigate.

Background: Death is an unavoidable feature of the human experience, and nurses play a critical role in caring for patients at the end of life. Nurses' attitudes toward death reflect their individual feelings toward death but may affect the quality of care provided at the end of life.

Objectives: To explore the nurses' attitudes toward death and the factors that may affect the quality of end-of-life care delivery in Oman among patients cared for in tertiary hospitals.

Design: A cross-sectional study design.

Methods: The study explored the nurses' attitudes toward death in Oman through a nationwide survey of the major governmental hospitals in Oman. The Death Attitude Profile-Revised scale was adopted to collect data from 1469 nurses working in tertiary hospitals using simple random sampling and population proportionate sampling methods.

Results: The nurses in Oman were Omani (46.8%) or Indian (43.7%) and had a bachelor's degree in nursing education (54.5%), with a mean age and clinical experience being 35 and 11 years, respectively. The mean scores showed that they had slightly more positive (4.78 ± 0.92) than negative (4.30 ± 0.94) attitudes toward death. Multiple linear regression analysis was performed to explore correlates of negative and positive death attitudes. The negative death attitudes were significantly associated with nationality (β = -1.25, p = 0.007), clinical experience (β = 0.94, p = 0.012), and self-rated spirituality (β = 0.92, p = 0.043). The positive death attitudes were significantly associated with nationality (β = 2.40, p = 0.009), age (β = 3.71, p < 0.001), and clinical experience (β = 2.40, p = 0.004).

Conclusion: The current study shows that nurses in Oman have slightly more positive than negative attitudes toward death. The positive death attitudes were significantly associated with increasing age among nurses and their clinical experience. The negative attitudes were significantly associated with increasing age and self-rated spirituality.

Background: Community volunteers in palliative care (PC) have a unique position between healthcare professionals, community residents with care needs, and informal caregivers, offering complementary care and potentially playing a key signposting role. However, they need specific support in recognizing, describing, and communicating patient needs effectively, which can be transferred through training. The specific knowledge and skills required to take on this signposting role remain unclear.

Aims: To explore (1) experiences of communication and information sharing between community volunteers and healthcare professionals and (2) the desired and required knowledge and skills volunteers need to recognize, describe, and communicate PC needs to healthcare professionals.

Methods: A qualitative study design was used, conducting focus groups with community volunteers and healthcare professionals, and individual semi-structured interviews with community residents with PC needs and informal caregivers. Inductive thematic analysis was applied.

Results: Seven focus groups with 15 community volunteers and 20 healthcare professionals, and 10 interviews with 6 community residents with care needs and 4 informal caregivers were conducted. Findings revealed limited contact between volunteers and professionals and a lack of mutual awareness of each other's involvement, with professionals often distrusting volunteers as communication and collaboration partners. Perceived hierarchy made volunteers hesitant to communicate with professionals. Communication was typically one-directional, with volunteers sharing patient information. There were no established procedures for communication and information sharing. To fulfill their signposting role, volunteers need knowledge of PC needs and community resources, and strong relational, communication, and observation skills.

Conclusion: Volunteers need extensive skills to take on their signposting role. Training programs could boost volunteers' self-confidence by (1) increasing awareness and understanding of the community volunteer role and signposting function; (2) enhancing knowledge of PC, PC needs, and community services; (3) strengthening communication with resident's care needs, informal caregivers, and healthcare professionals. For the sake of patient care, it is important to improve communication, relationships, and collaboration between volunteers and professionals.

Background: The COVID-19 pandemic introduced a landscape that contributed to many unknowns and unmet needs among cancer family caregivers and their care recipients.

Aim: This secondary analysis qualitative study aimed to explore cancer family caregiver narratives for the societal and institutional contexts of caring for a person with advanced cancer during the early years of COVID-19.

Design: Narrative inquiry was used in the parent study to co-create caregiver narratives.

Methods: Narrative thematic analysis was used to identify themes of COVID-19 from five cancer caregiver narratives.

Results: Thematic threads of COVID-19 were identified as short stories of tension woven throughout the caregiver narratives: advocacy for quality healthcare, the need to protect their person from the virus and medical/institutional disregard, financial strain, lack of social support, and the long goodbye. The findings further illustrate how COVID-19 and cancer intersect to influence a caregiver's healthcare experience and well-being.

Conclusion: Family-centered care strategies and policy changes are needed to better meet the complex needs of cancer caregivers during a pandemic and beyond.

The higher prevalence and incidents of chronic and life-threatening illnesses and the aging population living with morbidity and life-limiting conditions necessitate the need for care provisions like palliative care globally. Palliative care strives for the quality of life of patients with terminal illnesses and serious health conditions and their families. However, globally, access to palliative care remains very limited. The situation is similar in India, except for Kerala, where palliative care access to the needy population is almost universal. Kerala's community palliative care model is globally acclaimed for its operation, which includes community participation and sustainability. The palliative care policy of Kerala, which was the first one in Asia, was a significant milestone in the palliative care movement of Kerala, as it mandated the interventions from government measures and further strengthened the community-managed palliative care interventions. The palliative care efforts in Kerala have significantly influenced the health scenario. However, discussion on the role of palliative care in achieving sustainable development goals (SDGs) is minimal. In this context, this article explores the policy and practices of palliative care in Kerala and its contribution to SDG-3, health and well-being. We have surrounded the discussion on the context of palliative care interventions and Sustainable Development Goal 3 through the unique features of the Kerala model of palliative care and its contribution to the healthcare scenario of the state. Through available literature and from the researchers' first-hand experience, this article explores the reciprocity of palliative care interventions, policy, healthcare programs, and SDG-3. Documenting the potential of Kerala's community-based palliative care for SDG-3 has implications for replications of this model in similar contexts.

Background: The increase in the prevalence of chronic, complex, or life-limiting diseases is intrinsically associated with population aging. Therefore, it is necessary to reflect on health and social care, and community palliative care can play a fundamental role in responding to this phenomenon.

Objective: This research aimed to understand the factors that affect the care place at the end of life and death, identifying the informal caregivers' profile, the challenges of the all-care process, and the impact of a Community Palliative Care Team (CPCT).

Design: An observational retrospective cohort study was carried out.

Methods: The population of this study was caregivers of patients monitored by a Community Palliative Care Support Team between 2020 and 2022. In the sample, 78 caregivers were included according to inclusion and exclusion criteria, of whom 44 caregivers answered, representing a 55.70% response rate.

Results: Although it is not possible to generalize as we do not have statistically significant correlations, this study concludes that the informal caregivers included in the sample have a profile similar to the national profile in Portugal. They reported high emotional exhaustion, but also physical and financial exhaustion, as the primary care challenges. In addition, the results show that managing the progression of the disease was also highlighted as a challenge by 63.6% of caregivers. The impact of the team monitoring was also evaluated as positive and having an effect in achieving the patient's preference regarding the place of death.

Conclusion: CPCT and informal caregivers are two factors intrinsically linked and influencing the place of death at home when there is congruence between the patients and their caregivers' choices. Social resources and investment in a support network outside the hospital are essential to fulfilling the wishes of patients and families, allowing dignity and quality of life for both. From a medical point of view, these patients are so well or better treated in the community than in the hospital wards.