Barriers and drivers of public engagement in palliative care, Scoping review.

BACKGROUND: The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a formula that allows the community to have a voice. The aim of this scoping review is to identify barriers and facilitators to engage community in PC. METHODS: Systematic search was conducted in NICE, Cochrane Library, Health Evidence, CINAHL and PubMed database. KEYWORDS: Palliative care, End of life care, community networks, community engagement, public engagement, community participation, social participation, barriers and facilitators. RESULTS: Nine hundred seventy-one results were obtained. Search strategy and inclusion criteria yielded 13 studies that were read in detail to identify factors influencing community engagement in palliative care, categorized into: Public health and public engagement; Community attitudes towards palliative care, death and preferences at the end of life; Importance of volunteers in public engagement programs; Compassionate communities. CONCLUSION: Societal awareness must be a facilitated process to catalyse public engagement efforts. National policy initiatives and regional system support provide legitimacy and focus is essential for funding. The first step is to get a sense of what is important to society, bearing in mind cultural differences and to channel those aspects through health care professionals; connecting the most assistential part with community resources. The process and long-term results need to be systematically evaluated.

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.

Psychosocial and palliative care in African national cancer control plans: A qualitative study.

OBJECTIVE: Low and middle income countries of Africa account for a disproportionate amount of the global health burden of cancer. Providing patients access to psychosocial oncology and palliative care through policy structures such as the National Cancer Control Plans (NCCP) is essential to improving the care provided to patients and their families. The first phase of this study sought to determine the extent to which palliative care and psychosocial oncology were integrated in NCCPs in African countries. METHODS: A qualitative thematic analysis of the plans was used using Nvivo, with two-raters coding and continuous team discussions. Data were organized into an infographic map showing the coverage of themes across African countries. RESULTS: Fifty-eight NCCPs and NCD plans were analyzed in the 54 countries in Africa. The findings illustrate a lack of standardization across countries' NCCPs in addressing psychosocial oncology and palliative care themes. Certain areas presented good coverage across several plans, such as barriers to access, education, awareness, and health behaviors, coordination of care, families, caregivers and community involvement, and palliative care. Other themes presented low coverage, such as doctor-patient communication, mental health, bereavement, psychosocial care, survivorship care, and traditional medicine. CONCLUSIONS: One may consider further developing NCCP areas as they pertain to psychosocial oncology and palliative care to ensure their proper place on the policy agenda for a healthier Africa.

Interdisciplinary research approach based on a mixed-methods design to explore patient altruism at the end of life: a study protocol.

INTRODUCTION: In the end of life context, patients are often seen as somewhat passive recipients of care provided by health professionals and relatives, with little opportunity to be perceived as autonomous and active agents. Since studies show a very high prevalence of altruistic dispositions in palliative care patients, we strive to investigate the concept of patient altruism in a set of six interdisciplinary studies by considering three settings: (1) in the general palliative context-by studying to what extent patient altruism is associated with essential psychological outcomes of palliative care (subproject 1a), how altruism is understood by patients (subproject 1b) and how altruism expressed by patients is experienced by palliative care nurses (subproject 1c); (2) in two concrete decision-making contexts-advance care planning (subproject 2a) and assisted suicide (subproject 2b); and (3) through verbal and non-verbal patient communication in palliative care settings (subproject 3). METHODS AND ANALYSIS: Subproject 1a: a cross-sectional study using validated and standardised questionnaires. Subprojects 1b and 1c: a constructivist grounded theory method aiming at developing a novel theory from semistructured interviews in both patients and nurses. Subproject 2a: a thematic analysis based on (1) audio-recordings of advance care planning encounters and (2) follow-up semidirective interviews with patients and their relatives. Subproject 2b: a qualitative study based on thematic analysis of interviews with patients actively pursuing assisted suicide and one of their relatives.Subproject 3: a conversation analysis based on audio and video-recorded interactions in two settings: (1) palliative inpatient unit and (2) advance care planning discussions. ETHICS AND DISSEMINATION: The study project was approved by the Ethics Committees of the Canton of Vaud, Bern and Ticino (no: 2023-00088). In addition to participation in national and international conferences, each project will be the subject of two scientific publications in peer-reviewed journals. Additional publications will be realised according to result triangulation between projects. A symposium opened to professionals, patients and the public will be organised in Switzerland at the end of the project.

Virtual consultations: the experience of oncology and palliative care healthcare professionals.

OBJECTIVES: To maintain continuity of care during the Covid-19 pandemic, virtual consultations (VC) became the mainstay of patient-healthcare practitioner interactions. The aim of this study was to explore the views of oncology and palliative care healthcare professionals (HCPs) regarding the medium of VC. METHOD: A cross sectional mixed methodology observational study of oncology and palliative care HCPs, analysed via an inductive thematic approach. This was undertaken in accordance with relevant guidelines and regulations. RESULTS: 87 surveys were completed. Three master themes were identified. Personal, professional, and familial factors including patient age, illness and VC skillset all influenced practitioner's experience of VC. Relationships and connection were highlighted by survey respondents as important influences, with a perception that VC could reduce usual relationships with patients, compared to previous face-to-face consults. There was a perceived loss in these domains with VC. Sharing bad news and having challenging conversations was seen as particularly difficult via VC. Many survey respondents emphasized that they preferred to have first time consultations face-to-face, and not virtually. Within the domain of logistical and practical implications reduced travel and increased accessibility were seen as a significant benefit of VC. The inability to examine patients and concerns regarding missing clinical signs was emphasised as a significant worry, alongside the challenges faced with occasionally failing technology. CONCLUSION: VC were felt to have a role for those patients who are already known to professionals, where there was an established relationship. VC for difficult discussions and for unstable patients were felt to be inadequate. Triaging patient suitability prior to offering VC, with emphasis on the importance of patient choice, was seen as a priority in this new era of VC.

Understanding Family Members in the Palliative Phases of Their Loved Ones: A Qualitative Study.

Because of aging and rising rates of chronic diseases, the demand for palliative care services is increasing worldwide, and patients need family members to care for them throughout the palliative care process. This study aimed to investigate the experiences of the relatives of palliative care patients during hospitalization. This was a qualitative study conducted with 15 family members. A topic guide was used to conduct semistructured face-to-face interviews. Content analysis was used to analyze the textual data. As a result of the analysis, 3 main themes, 6 categories, and 24 subcategories emerged. The main themes were "reactions to the admission," "feeling obligated to care," and "coping processes." The interviews revealed that most participants had misconceptions and a lack of knowledge about palliative care. Almost all of the family members expressed that they experienced various emotions during this process and had trouble coping. The significant finding of our study is that culture and religious beliefs have a considerable influence on caregiving. A limited number of studies in the literature provide detailed insight into the state of patient relatives. Therefore, this study is critical in guiding palliative care professionals in understanding the requirements of this vulnerable group.

[Palliative Care in patients with gastrointestinal cancer]. / Palliativmedizin in der gastrointestinalen Onkologie.

Comprehensive Cancer Care stands for a concept of broad care providing substantial benefits to cancer patients. Beside prevention of cancer as first pillar and curative therapy as second pillar, comprehensive care also encompasses palliative care representing a third pillar providing service for incurable cancer patients burdened with physical symptoms and psychological, social and spiritual needs. This article describes the integration of palliative medicine into comprehensive cancer care for patients with gastrointestinal cancer.

Chinese and Belgian pediatricians' perspectives toward pediatric palliative care: an online survey.

BACKGROUND: As pediatricians play a vital role in pediatric palliative care (PPC), understanding their perspectives toward PPC is important. PPC is established for a long time in Belgium, but has a shorter tradition in China, although it is growing in the last decade. Sampling and comparing the perspectives of these pediatricians could be insightful for both countries. Therefore, we sampled and compared perspectives of pediatricians in China and Belgium toward PPC, and explored factors influencing their perspectives. METHODS: We conducted a cross-sectional online survey using the validated Pediatric Palliative Care Attitude Scale (PPCAS). Over a five-month period, we recruited pediatricians practicing in China (C) and Flanders (F), Belgium. Convenience sampling and snowballing were used. We analyzed data with descriptive statistics, and evaluated group differences with univariate, multivariate and correlation tests. RESULTS: 440 complete surveys were analyzed (F: 115; C: 325). Pediatricians in both regions had limited PPC experience (F: 2.92 ± 0.94; C: 2.76 ± 0.92). Compared to Flemish pediatricians, Chinese pediatricians perceived receiving less unit support (F: 3.42 ± 0.86; C: 2.80 ± 0.89); perceived PPC less important (F: 4.70 ± 0.79; C: 4.18 ± 0.94); and faced more personal obstacles while practicing PPC (F: 3.50 ± 0.76; C: 2.25 ± 0.58). Also, select socio-demographic characteristics (e.g., experiences caring for children with life-threatening condition and providing PPC) influenced pediatricians' perspectives. Correlational analyses revealed that pediatricians' PPC experiences significantly correlated with perceived unit support (ρF = 0.454; ρC=0.661). CONCLUSIONS: Chinese pediatricians faced more barriers in practicing PPC. Expanding PPC experiences can influence pediatricians' perspectives positively, which may be beneficial for the child and their family.

Challenges for palliative care in times of COVID-19: a scoping review.

Introduction: Many of the essential practices in palliative care (PC) had to be adapted to the COVID-19 pandemic. This global spread of the infectious respiratory disease, caused by SARS-CoV-2, created unprecedented obstacles. The aim of this research was to comprehensively assess the experiences and perceptions of healthcare professionals, individuals, and families in palliative and end-of-life situations during the COVID-19 pandemic. Methods: A scoping review was conducted using the databases CINAHL Complete, MEDLINE, Scopus, SciELO, Cochrane Central Register of Controlled Trials, Psychology and Behavioral Sciences, MEDIClatina, and Portugal's Open Access Scientific Repository. The review followed the JBI® methodological approach for scoping reviews. Results: Out of the initially identified 999 articles, 22 studies were included for analysis. The deprivation of relationships due to the safety protocols required to control the spread of COVID-19 was a universally perceived experience by healthcare professionals, individuals in PC, and their families. Social isolation, with significant psychological impact, including depersonalization and despair, was among the most frequently reported experiences by individuals in palliative situation. Despite healthcare professionals' efforts to mitigate the lack of relationships, the families of these individuals emphasized the irreplaceability of in-person bedside contact. Systematic review registration: https://osf.io/xmpf2/.

[Patient concerns and palliative psychology interventions within an inpatient palliative care service]. / Patientenseitige Anliegen und palliativpsychologische Interventionen im Rahmen eines stationären Palliativdienstes.

BACKGROUND: Multi-professional inpatient palliative care services are increasingly complementing palliative care in hospitals alongside palliative care units. The present study aims to investigate the nature and frequency of patient concerns and palliative psychological interventions in the context of palliative psychological work, as well as the perceived quality of outcomes in an inpatient palliative service. METHODS: Palliative psychological interventions for terminally ill patients at the inpatient palliative care service at Leipzig University Hospital were investigated in a prospective follow-up evaluation study. Psychological distress (distress thermometer) as well as the perceived quality of the results of the palliative psychological support (from the therapist`s perspective) were recorded. Patient concerns and psychological conversation topics and interventions were recorded. Descriptive and regression analytic procedures were used. RESULTS: Over a year, 355 patients in the inpatient palliative care service received psychological support, 304 participated in the study (mean age 63.8 years, 55% male, 89% oncological disease). An average of 3 palliative psychological interviews were conducted; 64% of patients reported high psychological distress (M=6.5). The most common patient concerns and topics within the interviews were dealing with emotions (87%), resources (83%), conflicting care and autonomy issues (77%) and hope (76%); significantly less common were spiritual concerns (2%) or the patient's legacy (9%). The most frequently used palliative psychological interventions included: support in illness processing and acceptance (74%) or in emotional-relieving interventions (98%) as in normalisation (75%), active listening (97%) or emotional containment (95%). Regression analysis showed that an oncological (vs. non-oncological) disease, a high number of palliative psychological interviews and interventions, comprehensive information regarding the palliative dimension of the diagnosis as well as undisturbed contact in the initial interview had a positive effect on the perceived outcome quality. CONCLUSION: The study results show that palliative psychologists play an important role in inpatient palliative care teams and should be involved as early as possible in the course of the disease. There is a need for improvement, especially in the palliative psychological care of non-oncological patients.

Experiences of music therapy in paediatric palliative care from multiple stakeholder perspectives: A systematic review and qualitative evidence synthesis.

BACKGROUND: Children and young people with life-limiting conditions and their families need physical and emotional support to manage the challenges of their lives. There is a lack of synthesised qualitative research about how music therapy is experienced by children, young people and their families supported by paediatric palliative care services. AIM: To systematically identify and synthesise qualitative research on experiences of music therapy in paediatric palliative care from stakeholder perspectives. DESIGN: A Qualitative Evidence Synthesis was conducted using Thematic Synthesis. The review protocol was registered in PROSPERO (registration number: CRD42021251025). DATA SOURCES: Searches were conducted with no dates imposed via the electronic databases PsycINFO, MEDLINE, EMBASE, AMED and CINAHL in April 2021 and updated in April 2022. Studies were appraised for quality using the Critical Appraisal Skills Programme tool (CASP). RESULTS: A total of 148 studies were found, 5 studies met the eligibility criteria reporting the experiences of 14 mothers, 24 family members and 4 staff members in paediatric palliative care. There were five overarching themes: emotional and physical reprieve, opportunity for normalised experiences, thriving despite life limited condition, enhance family wellbeing and therapeutic relationship central to outcomes. CONCLUSION: Music therapy provides unique benefits for this paediatric population particularly in supporting child and family wellbeing. The therapeutic relationship, interpersonal skills of the therapist and experience in paediatric palliative care are perceived as central to these positive outcomes.

Comparative study of oncology patients' quality of life.

BACKGROUND: A cancer diagnosis has a significant impact on a person's life, both physically and emotionally. However, the oncology patients' QoL (QoL) at different stages of the disease has been under investigated. AIM: To assess and compare the QoL in three groups of oncology patients. METHODS: A comparative study was carried out in an outpatient care service at a public hospital in the state of São Paulo. Data collection involved the use of the Palliative Performance Scale and the McGill QoL Questionnaire. RESULTS: Most participants were women, Catholic and living with a partner. The Palliative Performance Scale revealed a predominance of stable patients (score: ≥70 points). Overall, palliative care patients had lower QoL scores compared to the other groups (p<0.01). CONCLUSION: QoL was worse among palliative care patients. Advanced age, being in palliative care, and have a low-income were negatively associated with a patient's QoL.

'My life is a mess but I cope': An analysis of the language children and young people use to describe their own life-limiting or life-threatening condition.

BACKGROUND: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child. AIM: To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities. DESIGN: Positioned within a social constructivist paradigm, a secondary discourse analysis of semi-structured interview data was conducted incorporating the discourse dynamics approach for figurative language. SETTING/PARTICIPANTS: A total of 26 children and young people aged 5-17 years with life-limiting or life-threatening conditions (6 cancer; 20 non-cancer) were recruited from nine clinical services (six hospitals and three hospices) across two UK nations. RESULTS: The language children and young people use positions them as 'experts in their condition'. They combine medical terminology with their preferred terms for their body to describe symptoms and treatments, and use comparatives and superlatives to communicate their health status. Their language depicts their condition as a 'series of (functional and social) losses', which single them out from their peers as 'the sick one'. Older children and young people also incorporate figurative language to expand their descriptions. CONCLUSION/DISCUSSION: Children and young people can provide rich descriptions of their condition. Paying attention to their lexical choices, and converging one's language towards theirs, may enable more child-centred discussions. Expanding discussions about 'what matters most' with consideration of the losses and differences they have experienced may facilitate a fuller assessment of their concerns, preferences and priorities.

Adding spontaneity to organizations - what hospice volunteers contribute to everyday life in German inpatient hospice and palliative care units: a qualitative study.

BACKGROUND: Volunteers have always been integral to hospice and palliative care. However, their roles have been left relatively undefined and broad. AIM: This study aims to examine the role of hospice volunteers in German inpatient hospice and palliative care. The question we seek to answer is: What do hospice volunteers contribute to everyday life in inpatient hospice and palliative care units? METHODS: We undertook a multicenter, on-site qualitative interview study, utilizing problem-centered interviews with 16 volunteers from five inpatient hospice units and one hospital palliative care unit. Interviews were analyzed using grounded theory. RESULTS: Analysis of the interviews revealed three typical characteristics of how hospice volunteers' describe their own role: (1) performing small acts of kindness, (2) creating a family-like atmosphere, (3) expecting emotional experiences. A common theme across all categories is the emphasis on spontaneous actions and personal experiences. The process of dying becomes an experience interpreted by volunteers as enriching, as a gift, as a "teacher". CONCLUSION: Granting hospice volunteers freedom to act spontaneously and intuitively benefits hospice and palliative care delivery. Organizations should leave sufficient room for spontaneity in order to involve volunteers effectively. Open and unstandardized roles facilitate dynamic work practices.

Nurse assistants' perception of caring for older persons who are dying in their own home : An interview study.

BACKGROUND: As the proportion of older persons in society increases, there is a growing trend towards providing end-of-life care in their homes. Palliative care is a complex and knowledge-demanding form of care, and nurse assistants are those who work closest to the older person at the end-of-life in their own homes. However, nurse assistants sometimes have low educational and insufficient levels of knowledge in palliative care, which can affect the quality of care they provide. Moreover, nurse assistants' experiences are relatively unexplored in this context. The purpose of the study was to illuminate nurse assistants' experiences in caring for dying older persons at home. METHOD: An empirical, qualitative interview study was conducted with 14 nurse assistants with experience of palliative care in homecare. The material was analyzed using thematic content analysis. RESULTS: From the nurse assistant's experiences, one main theme emerged: doing everything possible for the dying older person despite challenges. Moreover, three sub-themes emerged: making a difference at a crucial time, death awakens emotions, and balancing personal and professional relationships. The nurse assistants' saw their role primarily as relieving symptoms but also focusing on next of kin. The following are described as essential parts of their role: carrying out practical nursing tasks, focusing on the physical environment, working alone and seeking help from colleagues due to a physical distance to the other members of the multidisciplinary team. The nurse assistants experienced a lack of support as there was no structured guidance or debriefing available in difficult emotional situations. Furthermore, they disclosed that they were left alone to deal with their feelings. CONCLUSION: This study demonstrates that nurse assistants strive to provide comprehensive care for dying older persons despite facing obstacles from their working conditions and work organization. They lack supervision and education in palliative care, but they rely on their experience-based knowledge to a large extent and provide care according to the four cornerstones of palliative care.

'Physical well-being is our top priority': Healthcare professionals' challenges in supporting psychosocial well-being in stroke services.

BACKGROUND: Following stroke, a sense of well-being is critical for quality of life. However, people living with stroke, and health professionals, suggest that well-being is not sufficiently addressed within stroke services, contributing to persistent unmet needs. Knowing that systems and structures shape clinical practice, this study sought to understand how health professionals address well-being, and to examine how the practice context influences care practice. METHODS: Underpinned by Interpretive Description methodology, we interviewed 28 health professionals across multiple disciplines working in stroke services (acute and rehabilitation) throughout New Zealand. Data were analysed using applied tension analysis. RESULTS: Health professionals are managing multiple lines of work in stroke care: biomedical work of investigation, intervention and prevention; clinical work of assessment, monitoring and treatment; and moving people through service. While participants reported working to support well-being, this could be deprioritised amidst the time-oriented pressures of the other lines of work that were privileged within services, rendering it unsupported and invisible. CONCLUSION: Stroke care is shaped by biomedical and organisational imperatives that privilege physical recovery and patient throughput. Health professionals are not provided with the knowledge, skills, time or culture of care that enable them to privilege well-being within their work. This has implications for the well-being of people with stroke, and the well-being of health professionals. In making these discourses and culture visible, and tracing how these impact on clinical practice, we hope to provide insight into why well-being work remains other to the 'core' work of stroke, and what needs to be considered if stroke services are to better support people's well-being. PATIENT OR PUBLIC CONTRIBUTIONS: People with stroke, family members and people who provide support to people with stroke, and health professionals set priorities for this research. They advised on study conduct and have provided feedback on wider findings from the research.

How palliative care professionals develop coping competence through their career: A grounded theory.

BACKGROUND: Palliative care professionals face emotional challenges when caring for patients with serious advanced diseases. Coping skills are essential for working in palliative care. Several types of coping strategies are mentioned in the literature as protective. However, little is known about how coping skills are developed throughout a professional career. AIM: To develop an explanatory model of coping for palliative care professionals throughout their professional career. DESIGN: A grounded theory study. Two researchers conducted constant comparative analysis of interviews. SETTING/PARTICIPANTS: Palliative care nurses and physicians across nine services from Spain and Portugal (n = 21). Theoretical sampling included professionals who had not continued working in palliative care. RESULTS: Professionals develop their coping mechanisms in an iterative five-stage process. Although these are successive stages, each one can be revisited later. First: commencing with a very positive outlook and emotion, characterized by contention. Second: recognizing one's own vulnerability and experiencing the need to disconnect. Third: proactively managing emotions with the support of workmates. Fourth: cultivating an integrative approach to care and understanding one's own limitations. Fifth: grounding care on inner balance and a transcendent perspective. This is a transformative process in which clinical cases, teamwork, and selfcare are key factors. Through this process, the sensations of feeling overwhelmed sometimes can be reversed because the professional has come to understand how to care for themselves. CONCLUSIONS: The explicative model presents a pathway for personal and professional growth, by accumulating strategies that modulate emotional responses and encourage an ongoing passion for work.

A Randomized Controlled Trial of Betamethasone on Fatigue in Patients With Advanced Cancer.

CONTEXT: Fatigue is one of the most uncomfortable physical symptoms seen in patients with advanced cancer. Previous studies have reported on the efficacy of corticosteroids from Western countries. OBJECTIVES: To assess the effectiveness of 4mg betamethasone improving fatigue among Japanese patients with advanced cancer. METHODS: A randomized, double-blind, placebo-controlled trial enrolled eligible patients with advanced cancer expected to survive 1-2 months, with an Eastern Cooperative Oncology Group Performance Status of 2-3, and experiencing fatigue according to the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core-15-palliative criteria. Participants received twice-daily oral administration of 2 mg betamethasone (4 mg/d) or placebo for seven days, with fatigue assessed using EORTC QLQ-C15-PAL subscale and numerical rating scale (NRS) score (at baseline and day seven). The trial was registered under the University Hospital Medical Information Network (UMIN)000011913. RESULTS: Among the 267 screened patients, 81 were eligible, of which 70 were evaluable (betamethasone, 33; placebo, 37). The mean difference in the EORTC-QLQ-C15-PAL fatigue subscale was -8.2 (95% CIs: -22.3, 0.0; P = 0.178) and in a NRS for fatigue was -1.2 (95% CIs: -2.5, -0.01; P = 0.048), respectively. Emotional function, appetite loss, and global-health were slightly better in the betamethasone group than in the placebo group. CONCLUSION: The impact of betamethasone 4 mg/d on alleviating fatigue in patients with advanced cancer in the last weeks of life did not reach statistical significance in the EORTC-QLQ-C15-PAL as the primary endpoint, however, it was significant in the NRS, the secondary endpoint.

Exploring Parent Experiences With Early Palliative Care Practices in the NICU.

BACKGROUND: The anxiety and uncertain outcome of an admission of a seriously ill infant to the neonatal intensive care unit (NICU) can cause great stress for parents and contribute to poor mental health outcomes. Early implementation of family-centered palliative care (PC) may provide support for NICU parents. Key concepts of early PC in the NICU include shared decision-making, care planning, and support for coping with distress. PURPOSE: The purpose of this study was to explore parent experiences during their child's NICU admission with the early PC practices of shared decision-making, care planning, and coping with distress. METHODS: Qualitative descriptive methodology was used. Strategies of reflexive journaling, peer debriefing, and data audits were used to enhance trustworthiness. Parents (N = 16) were interviewed, and data were analyzed by conventional content analysis. Targeted recruitment of fathers occurred to ensure they comprised 25% of sample. RESULTS: Parents' descriptions of decision-making were contextualized in gathering information to make a decision, the emotional impact of the decision, and influences on their decision-making. In experiences with care planning, parents described learning to advocate, having a spectator versus participant role, and experiencing care planning as communication. Key themes expressed regarding parental coping were exposure to trauma, survival mode, and a changing support network. IMPLICATIONS FOR PRACTICE AND RESEARCH: These findings highlight key areas for practice improvement: providing more support and collaboration in decision-making, true engagement of parents in care planning, and encouraging peer support and interaction in the NICU and in online communities.