The meaning of culture in nursing at the end of life - an interview study with nurses in specialized palliative care.

BACKGROUND: The countries of the world are becoming increasingly multicultural and diverse, both as a result of growing migration, of people fleeing countries at war but also due to increased mobility related to labour immigration. Culture is a broad concept where the definitions focus on learned and shared values, traditions, and beliefs of a group of individuals. People's culture affects health and perceptions of illness as well as treatment, symptoms, and care. Moreover, people who are at the end of life, live and exist within all levels and contexts of care. Specialized palliative care requires that the nurse has sufficient knowledge and skills to be responsible for meeting the patient's nursing needs also on a cultural level, regardless of cultural affiliation. The aim of the study was to highlight nurses' experiences of the meaning of culture when caring for patients at the end of life in specialized palliative care. METHODS: The study was conducted with a qualitative design and inductive approach. Semi-structured interviews were conducted with twelve nurses in western Sweden. Data were analysed using qualitative content analysis. RESULTS: The nurses had an awareness of culture as a phenomenon and how it affected palliative care at the end of life. The results showed two categories, Awareness of the impact of culture on nursing and Culture's impact and influence on the nurse's mindset and approach, consisting of seven subcategories that highlight the nurse's experience. It emerged that there are differences between cultures regarding notions of dying and death, who should be informed, and treatments. There were also challenges and emotions that arose when cultural preferences differed among everyone involved. A person-centred approach allowed for recognition of the dying person's culture, to meet diverse cultural needs and wishes. CONCLUSION: Providing culturally competent care is a major challenge. There are often no routines or methods prescribed for how nurses should relate to and handle the diversity of cultural notions that may differ from the values and cornerstones of palliative care. Having a person-centred approach as strategy can help to better manage the situation and provide equitable care on terms that respect cultural diversity.

Normality and compassionate care: experiences from advanced cancer patients in their last time at home.

BACKGROUND: Many cancer patients prefer to receive palliative treatment at home, as it allows them to be in a familiar and comfortable environment. Integrating Advance Care Planning (ACP) into routine practice in primary healthcare helps patients and their relatives prepare for end-of-life (EoL) care in accordance with patients' preferences. This includes the option to spend their final days at home if desired. The aim of this study was to gain insights from experiences of advanced seriously ill cancer patients at home while receiving palliative treatment and being engaged in ACP within primary healthcare settings. METHOD: This study employed a qualitative design, utilizing individual, semi-structured interviews that were analysed through reflexive thematic analysis, employing an abductive approach with a latent-level focus. The study included interviews with 12 participants with cancer who were receiving palliative care, had an estimated lifetime under 3 months, and had undergone an organized ACP approach in primary healthcare, documented with a palliative plan. RESULTS: Participants emphasized the importance of (1) Preserving normality at home, maintaining a sense of routine, comfort, and familiarity in the face of present and future challenges. The top obstacles for success identified by participants included (1a) The challenge of deterioration and the dual aspects of (1b) The value and burden of family caregivers. Cancer treatment placed a significant demand on patients due to side effects. Family caregivers played a crucial role for participants, providing support in daily life and serving as a key factor in the overall decision to which extend they are able to involve in support and care at home in the future. (2) Compassionate health care personnel (HCP) made a difference by fostering a culture of understanding participants' concerns, fears, and preferences, which was a key element that built and maintained trust for the participants. (3) Preparing for the future, especially EoL discussions initiated by healthcare personnel, was deemed important but, at times, uncomfortable for participants as it confronted them with reality. Guidance from ACP provided them with a sense of certainty and control. CONCLUSION: Preserving normality at home, along with the desire to stay at home for as long as possible, is a crucial goal for advanced cancer patients. Consistent professional communication and care in primary healthcare play a key role in building and maintaining trust, as well as fostering a sense of certainty and control for the participants.

The knowledge, attitude and behavior on the palliative care among neonatal nurses: what can we do.

BACKGROUND: Neonatal nurses should provide timely and high-quality palliative care whenever necessary. It's necessary to investigate the knowledge, attitude and behavior of palliative care among neonatal nurses, to provide references and evidences for clinical palliative care. METHODS: Neonatal intensive care unit (NICU) nurses in a tertiary hospital of China were selected from December 1 to 16, 2022. The palliative care knowledge, attitude and behavior questionnaire was used to evaluate the current situation of palliative nursing knowledge, attitude and behavior of NICU nurses. Univariate analysis and multivariate logistic regression analysis were used to analyze the influencing factors. RESULTS: 122 nurses were finally included. The average score of knowledge in neonatal nurses was 7.68 ± 2.93, the average score of attitude was 26.24 ± 7.11, the score of behavior was 40.55 ± 8.98, the average total score was 74.03 ± 10.17. Spearman correlation indicated that score of knowledge, attitude and behavior of palliative care in neonatal nurses were correlated with the age(r = 0.541), year of work experience(r = 0.622) and professional ranks and titles(r = 0.576) (all P < 0.05). Age (OR = 1.515, 95%CI: 1.204 ~ 1.796), year of work experience (OR = 2.488, 95%CI: 2.003 ~ 2.865) and professional ranks and titles (OR = 2.801, 95%CI: 2.434 ~ 3.155) were the influencing factors of score of knowledge, attitude and behavior of palliative care (all P < 0.05). PUBLIC CONTRIBUTION: NICU nurses have a positive attitude towards palliative care, but the practical behavior of palliative care is less and lack of relevant knowledge. Targeted training should be carried out combined with the current situation of knowledge, attitude and practice of NICU nurses to improve the palliative care ability and quality of NICU nurses.

Healthcare professionals' experiences of eHealth in palliative care for older people: challenges, compromises and the price of dignity.

PURPOSE: To explore whether and how eHealth solutions support the dignity of healthcare professionals and patients in palliative care contexts. METHOD: This qualitative study used phenomenographic analysis involving four focus group interviews, with healthcare professionals who provide palliative care to older people. RESULTS: Analysis revealed four categories of views on working with eHealth in hierarchical order: Safeguarding the patient by documenting-eHealth is a grain of support, Treated as less worthy by authorities-double standards, Distrust in the eHealth solution-when the "solution" presents a danger; and Patient first-personal contact with patients endows more dignity than eHealth. The ability to have up-to-date patient information was considered crucial when caring for vulnerable, dying patients. eHealth solutions were perceived as essential technological support, but also as unreliable, even dangerous, lacking patient information, with critical information potentially missing or overlooked. This caused distrust in eHealth, introduced unease at work, and challenged healthcare professionals' identities, leading to embodied discomfort and feeling of a lack of dignity. CONCLUSION: The healthcare professionals perceived work with eHealth solutions as challenging their sense of dignity, and therefore affecting their ability to provide dignified care for the patients. However, healthcare professionals managed to provide dignified palliative care by focusing on patient first.

Effect of Family Music Therapy on Patients with Primary Liver Cancer Undergoing Palliative Care and their Caregivers: A Retrospective Study.

OBJECTIVE: The effectiveness of family music therapy for patients with advanced palliative care hepatocellular carcinoma and their main caregivers was investigated. METHODS: The clinical data of liver cancer patients and their main caregivers admitted to Wuwei City People's Hospital from August 2022 to April 2023 were retrospectively analysed. Patients were divided into observation group A and control group A according to whether they received family music therapy, and caregivers were divided into control group B and observation group B. The general demographic data, self-rating depression scale (SDS), self-rating anxiety scale (SAS), cancer-related fatigue scale (CFS), Pittsburgh sleep quality index (PSQI), anticipatory grief scale (AGS), and caregiver burden inventory (CBI) scores of the patients and their primary caregivers were collected. Propensity score matching (PSM) was used to balance the baseline data of the two groups. Then, data were analysed using t-test and chi-squared (χ2) test. RESULTS: After 1:1 PSM, 45 samples were included in each group. Before management, no significant differences in SDS, SAS, AGS, CFS, PSQI and CBI scores were found among the groups (P > 0.05). After management, the SDS, SAS and CFS scores of observation group A were lower than those of control group A (P < 0.05). The AGS, PSQI and CBI scores of observation group B were lower than those of control group B (P < 0.05). CONCLUSIONS: The effect of family music supplement therapy is ideal, which can relieve the negative emotions of patients, reduce the degree of cancer-related fatigue, enhance the sleep quality of the main caregivers and reduce anticipatory grief and the burden of care.

Nutritional impairment, psychological health and quality of life among older adults with advanced cancer: A secondary analysis of a randomized clinical trial.

BACKGROUND: Nutritional impairment is associated with treatment toxicity and worse overall survival in patients with cancer. We aimed to (1) evaluate the association of nutritional impairment with psychological health and quality of life (QOL) and (2) examine which measures of nutrition had the strongest association with psychological health and QOL among older adults receiving cancer treatment with palliative intent. METHODS: This secondary analysis was performed on baseline data from a nationwide cluster randomized clinical trial (ClinicalTrials.gov identifier: NCT02107443; PI: Mohile). Adults age ≥70 with advanced cancer and ≥1 geriatric assessment (GA) impairment were enrolled from 2014 to 2017. In line with geriatric oncology standards, we defined nutritional impairment as Mini Nutritional Assessment Short Form (MNA-SF) ≤11, body mass index (BMI) <21 kg/m2, or >10% involuntary weight loss in the past 6 months. We conducted multivariable linear regressions to evaluate the association of nutritional impairment with each measure of psychological health and QOL: Geriatric Depression Scale (GDS-15, range 0-15), Generalized Anxiety Disorder-7 (GAD-7, range 0-21), NCCN Distress Thermometer (NCCN DT, range 0-10), and Functional Assessment of Cancer Therapy-General (FACT-G, range 0-108). Analyses were adjusted for patient demographics, clinical characteristics, and GA. RESULTS: Among 541 patients, the mean age was 77 (range 70-96) and 60% had nutritional impairment. Mean baseline scores: GDS-15 3.1 (SD 2.7), GAD-7 2.9 (SD 4.0), NCCN DT 2.9 (SD 2.7), and FACT-G 80 (SD 15). In the adjusted model, compared to those with no nutritional impairment, older adults with nutritional impairment had greater depression (ß = 0.79, 95% CI 0.36-1.23) and anxiety severity (ß = 0.86, 95% CI 0.19-1.53), and worse QOL (ß = -6.31, 95% CI -8.62 to -4.00). Of the measures of nutrition, MNA-SF ≤11 demonstrated the strongest associations with depression, anxiety, distress, and QOL. CONCLUSION: Nutritional impairment is associated with impaired psychological health and worse QOL. Clinicians should use the MNA-SF to screen older adults for nutritional impairment and offer tailored supportive interventions.

An exploration of the emotional impact of working in an adult hospice service for Irish healthcare professionals.

PURPOSE: An ageing population and a global pandemic has placed greater demands on palliative care services. Numerous studies describe the patient experience in palliative care, however, few explore the healthcare professional's experience of caring in this setting. This study explored the emotional challenges faced by palliative care professionals working in adult hospice services in Ireland. DESIGN/METHODOLOGY/APPROACH: A narrative phenomenological approach was adopted, using interpretative phenomenological analysis to analyse results from five participants' semi-structured interviews. FINDINGS: The type of challenge experienced reflected the impact it had on the participant's emotional wellbeing. Challenges perceived as achievable contributed to high levels of emotional wellbeing. These challenges often offered the opportunity for skill development and elicited positive feelings. Challenges perceived as uncontrollable negatively impacted the professional's emotional wellbeing and increased their risk of burnout. Examples of this included the shift in service provision and professional expectations. The challenges palliative care professionals experience on a daily basis can negatively or positively impact their emotional wellbeing. CONCLUSION: Overall, this study highlighted challenges and their impacts experienced by palliative care professionals, illustrating key areas for improvement to prioritise staff wellbeing.

[Psychological impact on primary caregivers of family members undergoing palliative treatment a review on quality of life] / Impacto psicológico en los cuidadores principales de familiares bajo tratamiento paliativo.

Primary caregivers of family members undergoing palliative care provide significant care, and as a result, their quality of life may be adversely affected. A systematic review was conducted to synthesize the evidence on caregiver's quality of life. Pubmed database and the digital library of the Universidad Católica Argentina were used. Thirteen articles were reviewed that addressed the following topics: general quality of life, impact on physical, emotional, social and spiritual dimensions, relationship between caregiver gender and quality of life. It is evident in the literature reviewed the importance of an adequate assessment of signs and symptoms in family caregivers in order to provide comprehensive assistance to promote their quality of life.

Los cuidadores principales de familiares que se encuentran bajo tratamiento paliativo brindan una atención significativa, y como resultado, su calidad de vida puede verse negativamente afectada. Se llevó a cabo una revisión sistemática para sintetizar la evidencia sobre la calidad de vida de estos cuidadores. Se utilizaron la base de datos Pubmed y la biblioteca digital de la Universidad Católica Argentina. Se revisaron 13 artículos que plantearon las siguientes temáticas: calidad de vida general, impacto en las dimensiones física, emocional, social y espiritual, relación entre el género del cuidador y la calidad de vida. Se evidencia en la literatura revisada la importancia de una adecuada evaluación de los signos y síntomas en los cuidadores familiares con el fin de poder brindar asistencia integral para favorecer su calidad de vida.

Experiencing and enduring patient distress: the distress of palliative care patients and its emotional impact on physicians in training.

BACKGROUND: The extreme vulnerability experienced by patients in palliative care may result in significant distress. These patients require appropriate care while not pathologizing their natural distress. Given the challenges of caring for people experiencing significant distress, it is important to understand what professionals in training may feel when caring for patients in palliative care. Therefore, the aim of this study was to explore how professionals in training feel when confronted with the distress of patients undergoing palliative care. METHODS: A qualitative study employing interpretative phenomenological analysis was conducted. In 2022, 11 physicians in training were interviewed about their experiences with distressed patients due to palliative care. The interviews were conducted via video conference. The students participated in the national palliative care cross-training and were in their final year of residency training. RESULTS: The interviews revealed the following five themes: feelings of powerlessness, duty to act, difficulty in building a relationship, feeling insecure about oneself, and creating a space for listening and relating. All participants felt powerless in front of their patient's distress. Numerous defense mechanisms were identified that made the relationship with the patient difficult. Four participants described being able to create a space for listening and relating to their patients. CONCLUSIONS: A minority of students could establish a quality relationship with their distressed patients. Two concepts, interprofessional education and the patient-centered approach, were identified and could be developed in training.

Patient and proxy perspectives in decision-making for geriatric hip fracture management in the Netherlands: a qualitative study.

OBJECTIVE: The objective of this study was to explore the perspectives with the decision-making process between surgery and palliative, non-operative management of geriatric hip fracture patients and their proxies. DESIGN: A qualitative interview study was performed. Patients and proxies were asked to participate in semi-structured interviews. Data were analysed using reflexive thematic analysis according to Braun and Clarke's six-step guide. SETTING AND PARTICIPANTS: Hip fracture patients in the Netherlands were eligible for inclusion. For hip fracture patients with a pre-existing diagnosis of dementia and for patients who opted for palliative, non-operative management, proxies were included. RESULTS: A total of 16 interviews were conducted, consisting of 4 patient interviews and 12 proxy interviews. Five themes were identified during thematic analysis: (1) underlying patient values, (2) the provision of information, (3) reasons to consider either palliative, non-operative management or surgery, (4) involvement in decision and (5) realisation of expectations. Information provided by the physician varied in terms of desired level of detail but involved discussing the advantages and disadvantages of surgery and palliative, non-operative management. Patients and proxies underscored the importance of achieving optimal quality of life, and the disparity between expected and actual treatment outcomes was unpleasant and negatively influenced the overall experience. CONCLUSIONS: In-depth analysis provided a unique insight into the patient and proxy perspectives in shared decision-making for geriatric hip fracture management in the acute setting. Overall, there were differences between reported experiences and preferences of participants. This heterogeneity stresses the importance of keeping a person-centred approach during shared decision-making. Other key considerations during shared decision-making include physicians informing patients from professional experience and communicating sensitively about both treatment options and prognosis. Physicians should aim to provide realistic, sensitive and timely information to both patients and proxies during the choice between curation and palliation for their hip fracture.

Naming racism as a root cause of inequities in palliative care research: a scoping review.

BACKGROUND: Racial and ethnic inequities in palliative care are well-established. The way researchers design and interpret studies investigating race- and ethnicity-based disparities has future implications on the interventions aimed to reduce these inequities. If racism is not discussed when contextualizing findings, it is less likely to be addressed and inequities will persist. OBJECTIVE: To summarize the characteristics of 12 years of academic literature that investigates race- or ethnicity-based disparities in palliative care access, outcomes and experiences, and determine the extent to which racism is discussed when interpreting findings. METHODS: Following Arksey & O'Malley's methodology for scoping reviews, we searched bibliographic databases for primary, peer reviewed studies globally, in all languages, that collected race or ethnicity variables in a palliative care context (January 1, 2011 to October 17, 2023). We recorded study characteristics and categorized citations based on their research focus-whether race or ethnicity were examined as a major focus (analyzed as a primary independent variable or population of interest) or minor focus (analyzed as a secondary variable) of the research purpose, and the interpretation of findings-whether authors directly or indirectly discussed racism when contextualizing the study results. RESULTS: We identified 3000 citations and included 181 in our review. Of these, most were from the United States (88.95%) and examined race or ethnicity as a major focus (71.27%). When interpreting findings, authors directly named racism in 7.18% of publications. They were more likely to use words closely associated with racism (20.44%) or describe systemic or individual factors (41.44%). Racism was directly named in 33.33% of articles published since 2021 versus 3.92% in the 10 years prior, suggesting it is becoming more common. CONCLUSION: While the focus on race and ethnicity in palliative care research is increasing, there is room for improvement when acknowledging systemic factors - including racism - during data analysis. Researchers must be purposeful when investigating race and ethnicity, and identify how racism shapes palliative care access, outcomes and experiences of racially and ethnically minoritized patients.

Unrealistic expectations and disclosure of incurability in patients with non-small cell lung cancer.

PURPOSE: Determining whether patients' unrealistic expectations of chemotherapy as a cure were associated with their perception of the disclosure of incurability. METHODS: This prospective study included consecutive patients with pretreated non-small cell lung cancer from four study sites. Patients and their oncologists were asked whether they perceived the disclosure of cancer incurability. Patients were also asked if they thought that chemotherapy was curative. We followed up on whether the deceased patients received specialized palliative care 14 months after their last enrollment. Multiple regression analyses were conducted to examine the association between the expectation of chemotherapy as a cure and patient/oncologist-reported perceptions of the disclosure of incurability. RESULTS: We analyzed 200 patients, 77 (38.5%) of whom had unrealistic expectations of a cure. Based on patients' perceptions, incurability was disclosed to 138 (69.0%) patients, and based on their oncologists' perceptions, incurability was disclosed to 185 (92.5%) patients (patient/oncologist agreements, κ = 0.19). Patients without a perception of the oncologist's disclosure of incurability-regardless of their oncologist's perception-were more likely to have unrealistic expectations of a cure than patients for whom both patient and oncologist perceptions were present. Patients who had unrealistic expectations of chemotherapy as a cure were shown to be significantly less likely to have received specialized palliative care, after adjusting for covariates (adjusted OR, 0.45; 95% CI, 0.23-0.91; p = .027). CONCLUSION: Oncologists' disclosure of incurability was not fully recognized by patients, and expectations of chemotherapy as a cure were associated with patients' perception of the disclosure of incurability.

Availability and stability of palliative care for family members of terminally ill patients in an integrated model of health and social care.

BACKGROUND: Palliative care and the integration of health and social care have gradually become the key direction of development to address the aging of the population and the growing burden of multimorbidity at the end of life in the elderly. AIMS: To explore the benefits/effectiveness of the availability and stability of palliative care for family members of terminally ill patients in an integrated institution for health and social care. METHODS: This prospective observational study was conducted at an integrated institution for health and social care. 230 patients with terminal illness who received palliative care and their family members were included. Questionnaires and scales were administered to the family members of patients during the palliative care process, including quality-of-life (SF-8), family burden (FBSD, CBI), anxiety (HAMA), and distress (DT). We used paired t-tests and correlation analyses to analyze the data pertaining to our research questions. RESULTS: In the integrated institution for health and social care, palliative care can effectively improve quality of life, reduce the family's burden and relieve psychological impact for family members of terminally ill patients. Palliative care was an independent influencing factor on the quality of life, family burden, and psychosocial status. Independently of patient-related and family-related factors, the results are stable and widely applicable. CONCLUSION: The findings underline the availability and stability of palliative care and the popularization of an integrated service model of health and social care for elder adults.

Spirituality in advanced cancer: implications for care in oncologic emergencies.

Spirituality-defined as "the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred"-plays important roles in the setting of serious illnesses such as cancer. The nature of oncologic emergencies, with their attendant imminent threat to life and urgent medical decision-making, renders more salient the frequent role of spirituality in the context of coping, spiritual needs, and medical decisions. Furthermore, these roles highlight the importance of spiritual care: recognition of and attention to patients' and their family's spirituality within medical care. Extant palliative care quality guidelines include spiritual care as a core domain of palliative care provision. Generalist spiritual care requires spiritual history-taking by clinicians and respect and integration of spirituality and spiritual values into medical care. Specialty spiritual care involves the integration of professionally trained spiritual care providers into the care of patients facing oncologic emergencies. Spiritual care is associated with better patient quality of life and greater transitions to more comfort-focused care; among family caregivers, it is associated with greater care satisfaction. Spiritual care is always patient-centered, and hence can be provided by clinicians regardless of their spiritual backgrounds. The integration of spiritual care into the care of patients and their families holds promise to advance holistic care and improve well-being in this setting of oncologic emergencies.

Mediating effect of meaning in life on death anxiety and attitude toward palliative care among undergraduate nursing students.

BACKGROUND: This study investigates the mediating effect of meaning in life between death anxiety and attitude toward palliative care among nursing students. METHODS: We enrolled 363 undergraduate nursing students using a convenience sampling method as the respondents and conducted a survey using general information about nursing students, the Chinese version of the FATCOD-B Scale, the Chinese version of the Death Anxiety Scale, and the Chinese version of the Meaning in Life Questionnaire. The SPSS25.0 statistical software was used to analyze the mediating effect. RESULTS: The mean total attitude score toward palliative care was (104.72 ± 10.62). Death anxiety had a significant negative predictive effect on the attitude toward palliative care (ß = -0.520, P < 0.01). When the mediating variable of the presence of meaning in life was included, the negative predictive effect of death anxiety on attitude toward palliative care remained significant (ß = -0.379, P = 0.036); the mediating effect (-0.141) accounted for 27.12% of the total impact (-0.520). CONCLUSIONS: The presence of meaning in life mediates the relationship between death anxiety and attitude toward palliative care. This implies that nursing educators, through their role in educating nursing students about the meaning of life, can significantly influence the development of a positive attitude toward palliative care.

Dignity enhanced through faith & family support in palliative care: a qualitative study.

BACKGROUND: Dignity is integral to palliative care. Illness can diminish it, causing hopelessness and the wish to hasten death. Yet, dignity is a complex multidimensional phenomenon, influenced by values and context. Understanding its varying interpretations can inform practice and policy. The aim of the study is to explore the understanding of dignity in adult patients with palliative care needs from a Lebanese perspective and how it is preserved during illness and while receiving health services. DESIGN: Qualitative interview study underpinned with a social constructionist lens. Fourteen patients recruited from home-based hospice and outpatient clinics in Lebanon. Data analysed using reflexive thematic analysis. RESULTS: Four themes were developed across all the interviews: (a) Dignity anchored through faith in God and religious practices; (b) Family support in maintaining physical, psychological wellbeing, and social connectedness; (c) Physical fitness, mental acuity, and healthy appearance through which patients may escape the stigma of disease, (d) accessible, equitable, and compassionate healthcare. DISCUSSION: Dignity is elusive and difficult to define but faith and religious beliefs play a significant contribution in this study. For the participants, illness is seen as a natural part of life that does not necessarily diminish dignity, but it is the illness related changes that potentially affect dignity. Findings show the importance of family and children in preserving dignity during illness and how their active presence provide a sense of pride and identity. Participants aspired to restore physical, social, and mental well-being to reclaim their dignity and normalize their lives. Challenges related to physical appearance, memory loss, vitality, and social stigma associated with illness diminished dignity. Accessible, equitable and compassionate healthcare services are also crucial in preserving dignity. Participants valued clear communication, respect, and empathy from healthcare providers and identified affordability of care essential for maintaining dignity. CONCLUSION: Faith in God, and strong family ties are dominant elements to maintaining dignity in the Lebanese context. Relational connectedness with family, children or God is also a need in maintaining dignity in other communal countries with variations in emphasis. The study indicates that religious and cultural context shapes the needs and perceptions of dignity during illness. These findings are likely to be transferable to many Middle Eastern countries but also countries with strong religious and family ties globally.

Qualitative evaluation of motives for acceptance or refusal of early palliative care in patients included in early-phase clinical trials in a French comprehensive cancer center: the PALPHA study.

PURPOSE: The integration of palliative care (PC) into oncological management is recommended well before the end of life. It improves quality of life and symptom control and reduces the aggressiveness of end-of-life care. However, its appropriate timing is still debated. Entry into an early-phase clinical trial (ECT) represents hopes for the patient when standard treatments have failed. It is an opportune moment to integrate PC to preserve the patient's general health status. The objective of this study was to evaluate the motives for acceptance or refusal of early PC management in patients included in an ECT. METHODS: Patients eligible to enter an ECT were identified and concomitant PC was proposed. All patients received exploratory interviews conducted by a researcher. Their contents were analyzed in a double-blind thematic analysis with a self-determination model. RESULTS: Motives for acceptance (PC acceptors: n = 27) were both intrinsic (e.g., pain relief, psychological support, anticipation of the future) and extrinsic (e.g., trust in the medical profession, for a relative, to support the advance of research). Motives for refusal (PC refusers: n = 3) were solely intrinsic (e.g., PC associated with death, negative representation of psychological support, no need for additional care, claim of independence). CONCLUSIONS: The motives of acceptors and refusers are not internalized in the same way and call for different autonomy needs. Acceptors and refusers are influenced by opposite representations of PC and a different perception of mixed management.

"Collateral beauty." Experiences and needs of professionals caring for parents continuing pregnancy after a life-limiting prenatal diagnosis: A grounded theory study.

BACKGROUND: Caring for parents continuing pregnancy after learning about a severe life-limiting condition in their unborn is challenging. Most existing studies focus on affected families, whereas research on the subjective experience of care professionals is scarce. AIM: We aimed to (1) explore experiences and needs of involved care professionals, (2) obtain information about existing care structures, and (3) identify requirements for a structured perinatal palliative care program. DESIGN: Grounded Theory study using theoretical sampling. Data was collected by semi-structured interviews and analyzed following the principles of grounded theory coding and situational analysis. SETTING: A total of 18 professionals from 12 different services in Munich and surroundings participated in the study: 8 physicians, 3 midwives, 2 nurses, 1 each pregnancy counselor, grief counselor, chaplain, clinical psychologist, and undertaker. RESULTS: Several organizations provide support for affected parents, but inter-institutional communication is scarce. Due to the lack of a dedicated perinatal palliative care program, professionals make immense and partly unpaid efforts to support concerned parents. Providers experience "collateral beauty" in their work despite all the suffering and grief. This includes the development of a humble attitude and feelings of gratitude toward life, the feeling of having a meaningful task and professional as well as personal growth. Requirements for a structured perinatal palliative care program include: fostering peer support, ensuring regular supervision, and enhancing interdisciplinary exchange. CONCLUSIONS: Perinatal palliative care demands a high level of personal engagement but is experienced as highly rewarding by care professionals.

Exploring Holistic Cancer Care and Survivorship in India Through the Kerala Model of Palliative Care: Role of Community Nurse and Outpatient Meetings.

Support groups and meetings are self-help gatherings that provide a unique sense of community, unconditional acceptance, and information on cancer and its treatment. This cross-sectional study examined 12 outpatient meetings within the Kerala model of palliative care, a community-based service provided to patients irrespective of disease, stage, or prognosis starting from the time of diagnosis. The study focused on the pivotal role of community nurses in facilitating these meetings, with participants including cancer patients and survivors. Using in-depth interviews (n = 52) and participant observations, this research used a qualitative approach and explored the dynamics and outcomes of outpatient meetings. Findings highlight the indispensable contributions of these community nurses serving as linchpins in providing support, guiding discussions, and offering crucial education. Outpatient meetings effectively addressed psychosocial concerns, combatted stigmas associated with cancer, and promoted informed decision making in cancer care. The study emphasizes the need for recognizing the role played by community nurses in improving psychosocial support and diminishing stigma, and ultimately the quality of life of patients and survivors through the palliative cancer care within the Kerala model. We also underscore the need for policy initiatives, resource allocation, and training programs tailored to support these frontline health care providers effectively.