Palliative Care and Social Practice最新文献

Hypnosis has gained popular interest over the last few decades and has become increasingly subject to research study. Evidence of benefit in the palliative care setting is largely lacking, but it has been shown to have a favourable impact on psychological symptoms, especially anxiety, as well as chronic pain conditions. As a personalised approach, hypnotherapy is an excellent example of individual-centred care. Moreover, in the absence of significant adverse effects, it offers great promise as a complementary therapy.

Background: Currently, there are over 70 hospice societies spread across urban, rural, and remote communities in BC. However, these societies are not utilized to their fullest potential, primarily due to a lack of awareness of the unique role they play in their communities and common misconceptions about the types of care they provide.

Objectives: To develop a consensus-based definition of the care provided by hospice societies in BC, suitable for use across government, healthcare, community organizations, and the public.

Design: A modified Delphi approach, guided by an environmental scan, was used to reach consensus on a standard definition of care among a panel of experts.

Methods: Following an environmental scan of gray and published literature for attributes and components of care delivered by hospice societies, the expert panel participated in a modified Delphi process of iterative surveys asking questions about content, wording, and structure of the definition. The 56-member panel consisted of hospice society experts, palliative care experts, and people with lived experience. Consensus was defined as 75% agreement across the entire panel (all) and 75% agreement across hospice society representatives (hospice).

Results: After six survey rounds, consensus was met on a common definition with three different length versions: full- and medium-length versions (85% all, 85% hospice) and a short version (94% all, 100% hospice). Differing opinions within our expert panel about components of care supported the need for this common definition.

Conclusion: Our consensus-based definition provides unprecedented clarity and a shared understanding about the care provided by hospice societies in BC. Hospice societies are expected to benefit from this clarity by maximizing their use and access. It is also expected that this definition will guide advocacy efforts, ultimately contributing to the quality and sustainability of hospice care across the province.

Background: Each year millions are diagnosed with cancer, impacting both patients and caregivers. Few interventions target both patients and family caregivers together, despite their shared experiences. While dyadic psychoeducational programs are gaining attention, evidence on developing and implementing these in international trials is limited. The DIAdIC trial faced unique challenges requiring innovative solutions to maintain study integrity.

Objectives: To present our experiences with the development and implementation of two dyadic psychoeducational home-based programs, FOCUS+ and iFOCUS in the context of a randomized controlled trial (RCT) in six European countries.

Design: A case report detailing our experiences in the development and implementation of two dyadic psychoeducational home-based programs (one face-to-face and one web-based) across multiple countries, highlighting the challenges and mitigating strategies in an international context.

Methods: A chronological narrative describing experiences with the development and implementation of iFOCUS and FOCUS+.

Results: The FOCUS+ and iFOCUS programs were successfully developed for the European context through rigorous translation and adaptation processes. Despite recruitment challenges including COVID-19 restrictions and administrative hurdles, 431 patient-caregiver dyads were enrolled across 6 European countries. Quantitative and qualitative data assessed the outcomes of FOCUS+ and iFOCUS interventions, including the primary endpoints of emotional functioning and self-efficacy. Fidelity was evaluated using audio recordings, checklists, and user data. Challenges in trial management were addressed with flexible timelines and technical support.

Conclusion: The international DIAdIC trial developed and implemented two psychoeducational dyadic programs for patients with advanced cancer and their family caregivers. Based on our experiences we share several insights for future similar studies. These relate to the attention needed for context-specific adaptations when using existing interventions or programs, the translation of human-facilitated programs to standalone eHealth versions, the challenges of adopting a dyadic focus in the study, the pragmatic challenges of conducting an RCT and evaluating implementation and effects, and the technology used for study management.

Background: The increasing life expectancy and resultant chronic medical comorbidities have resulted in more people requiring palliative care. Unfortunately, palliative care is restricted to marginalized populations, including refugees. In Canada, refugees are only eligible for federal health insurance, which provides basic medical and social coverage until they can obtain provincial health insurance.

Objectives: This study explored limitations in providing palliative care to refugees who had either federal or provincial health insurance in two care settings in Ontario, Canada.

Design: An explanatory sequential mixed-methods approach guided the review of local administrative data and interview data to understand palliative care delivery for refugees.

Methods: Local administrative data from a community health centre and an acute care hospital providing a palliative care approach were collected to review healthcare utilization for refugees with palliative care needs. Interviews from two focus groups with fourteen healthcare providers shared their care experiences in coordinating palliative care for refugees with either federal or provincial health insurance.

Results: Refugee patients with palliative care needs appeared to be accessing acute care services frequently to meet their needs over a 5-year period. Due to a lack of citizenship or permanent residency status, many refugees have access to only federal health insurance. Compared to those with routine provincial coverage, federally insured patients were admitted more frequently. Furthermore, healthcare provider experiences revealed that refugees with only federal insurance coverage had significant barriers to accessing community palliative care support, leading to increased reliance on acute care for quality palliative care.

Conclusion: This study highlights significant gaps in palliative care access for refugees, especially those with federal health insurance. Equitable access is essential in ensuring that patient-centred, quality palliative care is available to all.

Background: Palliative care (PC) can alleviate suffering and improve quality of life. Yet, disparities persist, particularly in Honduras. Training efforts in PC for non-health caregivers have proven to reduce burnout and stress while enhancing the quality of life for both caregivers and patients.

Purpose: This study aimed to explore the feasibility of a PC training program for non-health caregivers in Honduras.

Methods: This exploratory study utilized latent content analysis within an interpretivist paradigm. Data was collected through individual semi-structured interviews with 25 participants belonging to different key groups: patients diagnosed with cancer, non-health caregivers, PC experts, and health-related decision makers. Interviews were conducted in Honduras' three main cities: Tegucigalpa, San Pedro Sula, and La Ceiba. The sampling technique employed was maximum variation.

Results: PC patients and caregivers face significant emotional challenges, often worsened by poverty and resource limitations, which leads to a strain in family dynamics. A lack of education, driven by inadequate healthcare education and policies, contributes to widespread misconceptions about PC. However, progress through various sectors aligned with the same goals proves Honduras is a country with potential. A program with a bottom-up approach, with intersectoral collaboration and training tailored to the needs of caregivers and patients, is urgently needed.

Conclusion: It highlights the feasibility, necessity, and potential replicability of implementing a PC training program for non-health caregivers in Honduras, which could offer significant benefits at both individual and national levels. A program that truly accounts for health determinants may help mitigate PC shortages in similar regions. Further research and policy advocacy are essential to empower underserved populations and foster health equity across low- and middle-income settings, to ensure no one is left behind.

Introduction: About a decade after the introduction of palliative care teaching for undergraduate nurses and medical students in Uganda, no research has examined students' knowledge and self-efficacy to provide palliative and end-of-life care and their correlates.

Aims: To: (1) estimate final-year undergraduate nursing and medical students' knowledge of and self-efficacy to provide palliative and end-of-life care, (2) identify correlates of knowledge and self-efficacy to provide palliative and end-of-life care.

Design: A multicentre cross-sectional quantitative study.

Setting/participants: Final-year undergraduate medical and nursing students in eight medical and nursing schools in Uganda. Instruments included biodata sheet, the Palliative Care Quiz for Nursing questionnaire and the Palliative Care Self-Efficacy scale. Statistical analyses were performed using STATA version 14.0.

Results: The mean age of the participants (n = 466) was 24.45 ± 3.31 years. Participants' knowledge of palliative care scores was low in all domains 'Philosophy and principles of palliative care' 1.46 ± 0.93 (range: 0-4), 'Psychosocial and spiritual care' 0.61 ± 0.73 (range: 0-3) and 'Management of pain and other symptoms' 6.32 ± 1.75 (range: 0-13). Predictors of knowledge were Gender (p = 0.0242), course of study (p = 0.0001) and religion (p = 0.0338). Participants had very low self-efficacy scores in the three domains of the Palliative Care Self-Efficacy scale.

Conclusion: Participants generally demonstrated limited knowledge and insufficient self-efficacy in providing palliative and end-of-life care. There is a need to integrate and strengthen practical, pedagogical and experiential teaching, review the palliative care curriculum. Future evaluative, longitudinal and interventional as well as qualitative studies are needed to gain deeper insights into this topic.

Background: Assisted dying or 'euthanasia' has been legal in Belgium since 2002. Extensive research has been conducted which investigates Belgian euthanasia practice, however, the current challenges that health professionals face when providing euthanasia are not well known. This knowledge is important for evaluating the current system, especially in light of recent developments in Belgian euthanasia law and practice including judicial decisions, legislative amendments and research highlighting the complexity of its governing regulatory framework.

Objectives: This study investigates the key challenges that health professionals experience when providing euthanasia in Belgium.

Design: A qualitative interview study with reflexive thematic analysis.

Methods: Twenty interviews were conducted between September 2022 and March 2024 using Microsoft Teams videoconferencing. Eligible participants were physicians and nurses who spoke English or Dutch and who had been involved in the euthanasia assessment of at least two patients in the past year.

Results: Four themes were generated: (1) the framing of the euthanasia legislation poses challenges; (2) providing euthanasia can place considerable burdens on health professionals; (3) clashing views about euthanasia can hamper opportunities for balanced discussions and (4) euthanasia and processes relating to euthanasia are not always well-understood.

Conclusion: This study highlights the numerous and varied challenges physicians and nurses experience when providing euthanasia in Belgium, even 20 years after its law passing. This study contributes to a wider understanding of universal challenges associated with providing assisted dying and sheds light on issues specific to Belgium. The results provide an opportunity for policymakers to take action to better support providers to manage these challenges, including through a formal review of the legislation and the broader system.

Background: Informed end-of-life decision-making requires a high level of death literacy. We still know little about the general population's level of knowledge and its determinants.

Aim: To assess knowledge of the general population regarding the legal status and definitions of various end-of-life practices, and to compare the level of knowledge according to individual characteristics known to influence death literacy.

Design: A self-administered questionnaire featuring two evolving vignettes was used to assess participants' knowledge relating to the legal status of various end-of-life practices and whether these practices are Medical Aid in Dying (MAiD), which is legal in Canada. The questionnaire also assessed participants' individual characteristics such as their experience as caregivers for someone who received palliative care, their perception of health, and their financial situation.

Setting/participants: Participants were community-based community-based Canadian adults able to read French or English.

Results: In total, 27% of the participants associated the description of care withholding with MAiD, 39% incorrectly associated the description of continuous palliative sedation with MAiD, and 34% incorrectly indicated that the described intervention was illegal. Having cared for someone who received palliative care, at a younger age, a higher level of education, and having participated in advance care planning were associated with better knowledge regarding end-of-life practices.

Conclusion: Gaps in knowledge about end-of-life practices exist in the general population, they are associated with different individual characteristics and may limit citizens' capacity to engage in informed end-of-life decision-making. Community-based interventions adapted to different audiences are essential to ensure a quality end-of-life for all.

Background: As Compassionate Communities (CCs) are developing worldwide, there is a growing need to systematically assess if they are having the expected effects on the community. Although having a single strategy would be ideal in terms of standardization and comparison, due to the inherent heterogeneity of CCs, it is not known how feasible this would be.

Objectives: To assess the feasibility of creating a general strategy, based on the results of a series of focus groups conducted across three diverse CCs, to guide the evaluation of already existing programs and the development of new ones.

Design: Focus groups in three cities, including different types of stakeholders, were conducted to identify potential outcomes (benefits) from CCs, as the base of a general strategy to assess CCs.

Methods: We coded the discussions and built a list of the outcomes mentioned. Then, we merged those similar enough into a more general one that encompassed the others. We extracted from reviews all the CCs outcomes that have been measured. We merged the outcomes from the focus groups and the reviews and built a single list.

Results: We obtained a final list of 46 outcomes; 44 were reported from the focus groups, and two more were added from the reviews. Of the 44 from the focus groups, 22 (50%) were present in the three CCs, 14(32%) were present in two CCs, and the remaining 8 (18%) were present only in one compassionate community. There were outcomes commonly reported both in the three CCs and in the literature reviews related to training the general community in compassion and end-of-life topics, facilitating the development of community networks, and generating public spaces for social integration.

Conclusion: Half of the identified outcomes were reported in the three CCs. This indicates the feasibility of creating a single strategy but also reflects the need to leave room to include other aspects specific to each community according to its context in the assessment.

Background: Municipality-based pediatric palliative care (PPC) is recommended to promote the quality of life for the child and family by enabling them to stay at home as much as possible. However, municipality-based PPC presents complex challenges and places significant demands on healthcare professionals. Yet, it remains an underexplored field.

Objectives: Semi-structured and individual interviews with 16 healthcare professionals with experiences from PPC were conducted and transcribed. Data was analyzed using systematic text condensation.

Results: To increase the knowledge base and understanding of important factors for municipality-based PPC from healthcare professionals' perspective.

Design: A qualitative method with an interpretive descriptive design was applied.

Methods: The bridging theme "Establishing a sense of security and predictability for the family and healthcare professionals" emerged from the analysis. This was elaborated by three main themes: (1) "A comprehensive approach to the family," (2) "Establishing and maintaining a dedicated, multidisciplinary pediatric palliative team in the municipality," and (3) "Collaboration and communication between involved services." Each main theme was further elaborated by subthemes.

Conclusion: The importance of establishing security and predictability in municipality-based PPC was emphasized. To achieve this, holistic support for the entire family and ensuring sufficient competence in the municipality seem crucial. Establishing municipality PPC teams is proposed, and the need for early referral, routines for collaboration, and a designated coordinator appear to be key systemic factors.

Registration and reporting guidelines: The study is registered in the institutional system for research project (RETTE ID: R2082), and the study is reported according to the COREQ checklist for qualitative studies.