Describing Nurses' Work and Educational Needs in Providing Neonatal Palliative Care: A Narrative Review.

Nurses in NICUs report insufficient education as a persistent barrier to providing quality neonatal palliative care (NPC). Since existing literature on educational interventions in NPC is limited, this review aimed to identify and narratively synthesize literature both about nurses' attitudes toward NPC and the NPC education received by nurses. We conducted a nonsystematic narrative literature review. Four themes were identified from the 28 articles included in this review. These were as follows: (a) nursing work in NPC, (b) NICU nurses' experiences and perceptions of NPC, (c) facilitators and barriers to nursing work in NPC, and (d) educational interventions in NPC. This literature review identified studies about NICU nurses' experiences and education in providing NPC. NICU nurses both desired and lacked education in NPC. This literature review identifies the importance of developing and evaluating NPC education for nurses.

Qualitative Study of Nurses' Experiences as They Learned to Provide Neonatal Palliative Care.

OBJECTIVE: To describe the experiences of nurses as they learned to provide palliative care in the NICU. DESIGN: Interpretive description. SETTING: Four NICUs in three Canadian provinces, including one rural center and three tertiary centers. PARTICIPANTS: Nine NICU nurses with 3 to 21 years of experience who provided neonatal palliative care. METHODS: We collected data using online interviews that we recorded and transcribed. We analyzed data using immersion, inductive coding, reflective memoing, and thematic analysis. RESULTS: Participants received little or no formal education in neonatal palliative care and instead learned to provide this care through observation and experience. Participants said it was important to find meaning in their work, which contributed to their motivation to learn to provide high-quality neonatal palliative care. Participants described challenges, including unit cultures in which early palliative care was not embraced. We identified three overarching themes that represented the participants' experiences: Meaning-Making in Neonatal Palliative Care, Challenges in Providing Neonatal Palliative Care, and Ill-Prepared to Provide Neonatal Palliative Care. CONCLUSION: Standardized education may improve the quality of care and nurses' experiences with neonatal palliative care. We recommend designing and evaluating a standardized curriculum on neonatal palliative care.

Evaluation of the Strengthening a Palliative Approach in Long Term Care (SPA-LTC) programme: a protocol of a cluster randomised control trial.

INTRODUCTION: Despite the high mortality rates in long-term care (LTC) homes, most do not have a formalised palliative programme. Hence, our research team has developed the Strengthening a Palliative Approach in Long Term Care (SPA-LTC) programme. The goal of the proposed study is to examine the implementation and effectiveness of the SPA-LTC programme. METHODS AND ANALYSIS: A cross-jurisdictional, effectiveness-implementation type II hybrid cluster randomised control trial design will be used to assess the SPA-LTC programme for 18 LTC homes (six homes within each of three provinces). Randomisation will occur at the level of the LTC home within each province, using a 1:1 ratio (three homes in the intervention and control groups). Baseline staff surveys will take place over a 3-month period at the beginning for both the intervention and control groups. The intervention group will then receive facilitated training and education for staff, and residents and their family members will participate in the SPA-LTC programme. Postintervention data collection will be conducted in a similar manner as in the baseline period for both groups. The overall target sample size will be 594 (297 per arm, 33 resident/family member participants per home, 18 homes). Data collection and analysis will involve organisational, staff, resident and family measures. The primary outcome will be a binary measure capturing any emergency department use in the last 6 months of life (resident); with secondary outcomes including location of death (resident), satisfaction and decisional conflict (family), knowledge and confidence implementing a palliative approach (staff), along with implementation outcomes (ie, feasibility, reach, fidelity and perceived sustainability of the SPA-LTC programme). The primary outcome will be analysed via multivariable logistic regression using generalised estimating equations. Intention-to-treat principles will be used in the analysis. ETHICS AND DISSEMINATION: The study has received ethical approval. Results will be disseminated at various presentations and feedback sessions; at provincial, national and international conferences, and in a series of manuscripts that will be submitted to peer-reviewed, open access journals. TRIAL REGISTRATION NUMBER: NCT039359.

Examining the development of information needs assessment tools for use in the cancer context: A scoping and critical review.

BACKGROUND: Information needs are one of the most common unmet supportive care needs of those living with cancer. Little is known about how existing tools for assessing information needs in the cancer context have been created or the role those with lived cancer experience played in their development. OBJECTIVES: This review aimed to characterize the development and intended use of existing cancer specific information needs assessment tools. METHODS: A systematic scoping review was conducted using a peer-reviewed protocol informed by recommendations from the Joanna Briggs Institute and the Prefered Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist. RESULTS: Twenty-one information needs assessment tools were included. Most tools were either breast cancer (n = 8) or primary tumor nonspecific (n = 8). Patients and informal carers participated in initial identification of questionnaire items in the minority of cases (n = 6) and were more commonly involved in reviewing the final questionnaire before use or formal psychometric testing (n = 9). Most questionnaires were not assessed for validity or reliability using rigorous quantitative psychometric testing. SIGNIFICANCE OF RESULTS: Existing tools are generally not designed to provide a rigorous assessment of informational needs related to a specific cancer challenge and are limited in how they have been informed by those with lived cancer experience. Tools are needed that both rigirously address information needs for specific cancer challenges and that have been developed in partnership with those who have experienced cancer. Future directions should include understanding barriers and facilitators to developing such tools.

Navigating the Cancer Journey Using Web-Based Information: Grounded Theory Emerging From the Lived Experience of Cancer Patients and Informal Caregivers With Implications for Web-Based Content Design.

BACKGROUND: The internet is an important source of information for many informal caregivers and patients living with cancer. A better understanding of how individuals use the internet to meet their informational needs is important for guiding intervention development. OBJECTIVE: The objectives of this study were to develop a theory describing why individuals living with cancer use the internet to find information, characterize the challenges faced with existing web-based content, and provide recommendations for web-based content design. METHODS: Adults (≥18 years) with a history of being patients with cancer or informal caregivers were recruited from Alberta, Canada. After providing informed consent, participants were engaged through digitally recorded one-on-one semistructured interviews, focus groups, a web-based discussion board, and emails. Classic grounded theory guided the study procedures. RESULTS: A total of 21 participants took part in 23 one-on-one interviews and 5 focus groups. The mean age was 53 (SD 15.3) years. Breast, gynecological, and hematological cancers were the most common cancer types (4/21, 19% each). In total, 67% (14/21) of patients, 29% (6/21) of informal caregivers, and 5% (1/21) of individuals reporting both roles participated. Participants experienced many new challenges in their cancer journey and used the internet to become better oriented to them. For each challenge, internet searching attempted to address one or more of 3 key orientation questions: why the challenge was happening, what to expect, and options for managing it. Better orientation resulted in improved physical and psychosocial well-being. Content that was well laid out, concise, free of distractions, and that addressed the key orientation questions was identified as the most helpful in assisting with orientation. Creators of web-based content are encouraged to 1) clearly identify the cancer challenge and population the content is addressing, as well as the presence of any potentially distressing information; 2) provide versions of the content in different formats, including printer-friendly, audio, video, and alternative languages; 3) state who created the content, including the individuals, organizations, and processes involved; 4) place hyperlinks after the key orientation questions have been addressed; and 5) ensure that the content is optimized for discovery by search engines (ie, Google). CONCLUSIONS: Web-based content plays an essential role for many living with cancer. Clinicians are encouraged to take active steps to help patients and informal caregivers find web-based content that meets their informational needs. Content creators also have a responsibility to ensure that the content they create assists and does not hinder those navigating the cancer journey. Research is needed to better understand the many challenges that individuals living with cancer face, including how they are temporally related. In addition, how to optimize web-based content for specific cancer challenges and populations should be considered an important area for future research.

The incidence of VP shunt infection in a middle-income nation: a retrospective analysis of a pediatric population.

Objective: To investigate the incidence of infection after ventriculoperitoneal shunt (VPS) insertion at the Bustamante Hospital for Children (BHC), Jamaica, West Indies. Method: Of the 178 patients managed by the Neurosurgery team at BHC, who underwent surgery between 2010 and 2016, 122 patients were subjected to the cerebrospinal fluid (CSF) diversion procedure through a VPS placement. The patients excluded from this study included those with a VPS placed at another institution or one placed prior to the study period. There is a notable transition that saw a switch from the use of the Codman uni-port to Medtronic shunts in 2014-2015, which initiated the process of reuse of shunt passers. Clinical data were retrospectively collected from operating theater logs and available manual health records. Results: Over the 7-year study period of the 122 first-time shunt placements done, 17 patients (13.9%) had positive CSF cultures, with an additional six (4%) having CSF pleocytosis with negative cultures. The most common isolate was the Staphylococcus species, occurring in 60% of VPS infections. The median time to shunt infection was 2 months. Of the 72 Codman shunts placed, six became infected, and 21.7% (10 of 46) of the Medtronic shunts became infected. Conclusion: The rate of incidence of VPS infection was 13.9% for the period between 2010 and 2016, with most infections occurring after 2014. The major causative agent was Staphylococcus species at 60% within a median 2 months of surgery. Overall, this compares well with data reported in the literature.

Examining the Development of Information Needs Assessment Questionnaires in Oncology: Protocol for a Scoping Review.

BACKGROUND: Information needs are one of the most prevalent unmet supportive care needs of those living with cancer, including patients and their informal caregivers. Understanding how existing questionnaires for evaluating information needs have been developed is important for guiding appropriate use and informing future research. A literature review examining how information needs assessment questionnaires for use in the cancer context have been developed, with a specific focus on how questionnaire items have been identified, does not exist. OBJECTIVE: This scoping review will examine how questionnaires for assessing the information needs of those living with cancer have been developed with special focus on how patients, informal caregivers, and health care professionals have been involved in the selection and identification of questionnaire items. METHODS: This review will include published studies describing the development and validation of information needs assessment questionnaires for use in the oncology context. MEDLINE (Ovid), Embase (Ovid), CINAHL, Scopus, Web of Science, the Cochrane Database of Systematic Reviews, and PsycInfo will be searched. Articles published at any point up to the date of the search will be eligible for inclusion. One person will screen titles and abstracts, and 2 people will screen and extract data from full-text articles. RESULTS: Results are expected to be available in early 2023. Summary tables and a narrative summary will be used to describe results. CONCLUSIONS: This scoping review will assist in identifying appropriate information needs assessment tools to incorporate into clinical and research contexts in oncology. It will also identify if additional information needs assessment tools are needed. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/35639.

Oncology clinical trials nursing: A scoping review.

In the 21st century, cancer is a disease that captures much of our attention for its complexity, and its physical, emotional, and financial impacts on one's life. Research attention and investment in cancer management has made it the most studied disease in clinical trials globally. Clinical trials nurses are part of the oncology research team and a fundamental factor in trial success. Their direct relationship with research subjects is the key connection in the operation of clinical trials at the front line. The influx and complexity of oncology clinical trials has transformed both oncology nursing practice in general and led to the development of the unique subspecialty of the oncology clinical trials nurse. This scoping review investigated the role and future practice of the clinical trials nurse.

Compassion in pediatric oncology: A patient, parent and healthcare provider empirical model.

OBJECTIVE: Compassion has long been considered a cornerstone of quality pediatric healthcare by patients, parents, healthcare providers and systems leaders. However, little dedicated research on the nature, components and delivery of compassion in pediatric settings has been conducted. This study aimed to define and develop a patient, parent, and healthcare provider informed empirical model of compassion in pediatric oncology in order to begin to delineate the key qualities, skills and behaviors of compassion within pediatric healthcare. METHODS: Data was collected via semi-structured interviews with pediatric oncology patients (n = 33), parents (n = 16) and healthcare providers (n = 17) from 4 Canadian academic medical centers and was analyzed in accordance with Straussian Grounded Theory. RESULTS: Four domains and 13 related themes were identified, generating the Pediatric Compassion Model, that depicts the dimensions of compassion and their relationship to one another. A collective definition of compassion was generated-a beneficent response that seeks to address the suffering and needs of a person and their family through relational understanding, shared humanity, and action. CONCLUSIONS: A patient, parent, and healthcare provider informed empirical pediatric model of compassion was generated from this study providing insight into compassion from both those who experience it and those who express it. Future research on compassion in pediatric oncology and healthcare should focus on barriers and facilitators of compassion, measure development, and intervention research aimed at equipping healthcare providers and system leaders with tools and training aimed at improving it.

Information Access and Use by Patients With Cancer and Their Friends and Family: Development of a Grounded Theory.

BACKGROUND: Information has been identified as a commonly unmet supportive care need for those living with cancer (ie, patients and their friends and family). The information needed to help individuals plan their lives around the consequences of cancer, such as the receipt of health care, is an example of an important informational need. A suitable theory to guide the development of interventions designed to meet this informational need has not been identified by the authors. OBJECTIVE: The aim of this study is to generate a grounded theory capable of guiding the development of interventions designed to assist those living with cancer in meeting their informational needs. METHODS: Classic grounded theory was used to analyze data collected through digitally recorded one-on-one audio interviews with 31 patients with cancer and 29 friends and family members. These interviews focused on how the participants had accessed and used information to plan their lives and what barriers they faced in obtaining and using this information. RESULTS: The theory that emerged consisted of 4 variables: personal projects, cancer as a source of disruption to personal projects, information as the process of accessing and interpreting cancer-related data (CRD) to inform action, and CRD quality as defined by accessibility, credibility, applicability, and framing. CRD quality as a moderator of personal project disruption by cancer is the core concept of this theory. CONCLUSIONS: Informational resources providing accessible, credible, applicable, and positively framed CRD are likely key to meeting the information needs of those affected by cancer. Web-based informational resources delivering high-quality CRD focused on assisting individuals living with cancer in maintaining and planning their personal projects are predicted to improve quality of life. Research is needed to develop and integrate resources informed by this theoretical framework into clinical practice.

Healthcare providers perspectives on compassion training: a grounded theory study.

BACKGROUND: There is little concrete guidance on how to train current and future healthcare providers (HCPs) in the core competency of compassion. This study was undertaken using Straussian grounded theory to address the question: "What are healthcare providers' perspectives on training current and future HCPs in compassion?" METHODS: Fifty-seven HCPs working in palliative care participated in this study, beginning with focus groups with frontline HCPs (n = 35), followed by one-on-one interviews with HCPs who were considered by their peers to be skilled in providing compassion (n = 15, three of whom also participated in the initial focus groups), and end of study focus groups with study participants (n = 5) and knowledge users (n = 10). RESULTS: Study participants largely agreed that compassionate behaviours can be taught, and these behaviours are distinct from the emotional response of compassion. They noted that while learners can develop greater compassion through training, their ability to do so varies depending on the innate qualities they possess prior to training. Participants identified three facets of an effective compassion training program: self-awareness, experiential learning and effective and affective communication skills. Participants also noted that healthcare faculties, facilities and organizations play an important role in creating compassionate practice settings and sustaining HCPs in their delivery of compassion. CONCLUSIONS: Providing compassion has become a core expectation of healthcare and a hallmark of quality palliative care. This study provides guidance on the importance, core components and teaching methods of compassion training from the perspectives of those who aim to provide it-Healthcare Providers-serving as a foundation for future evidence based educational interventions.

A pilot evaluation of the Strengthening a Palliative Approach in Long-Term Care (SPA-LTC) program.

BACKGROUND: Despite increased annual mortality in long-term care (LTC) homes, research has shown that care of dying residents and their families is currently suboptimal in these settings. The purpose of this study was to evaluate resident and family outcomes associated with the Strengthening a Palliative Approach in LTC (SPA-LTC) program, developed to help encourage meaningful end of life discussions and planning. METHODS: The study employs a mixed method design in four LTC homes across Southern Ontario. Data were collected from residents and families of the LTC homes through chart reviews, interviews, and focus groups. Interviews with family who attended a Palliative Care Conference included both closed-ended and open-ended questions. RESULTS: In total, 39 residents/families agreed to participate in the study. Positive intervention outcomes included a reduction in the proportion of emergency department use at end of life and hospital deaths for those participating in SPA-LTC, improved support for families, and increased family involvement in the care of residents. For families who attended a Palliative Care Conference, both quantitative and qualitative findings revealed that families benefited from attending them. Residents stated that they appreciated learning about a palliative approach to care and being informed about their current status. CONCLUSIONS: The benefits of SPA-LTC for residents and families justify its continued use within LTC. Study results also suggest that certain enhancements of the program could further promote future integration of best practices within a palliative approach to care within the LTC context. However, the generalizability of these results across LTC homes in different regions and countries is limited given the small sample size.

Digital Storytelling as a Psychosocial Tool for Adult Cancer Survivors.

PURPOSE: To understand the meaning and impact for adult patients with cancer (past or present) of creating a digital story related to their cancer experience. PARTICIPANTS & SETTING: 10 participants made digital stories with the help of a research assistant trained in digital storytelling. This research took place in a large, urban center in Calgary, Alberta, Canada. METHODOLOGIC APPROACH: This research was done in the tradition of philosophical hermeneutics. Ten one-on-one interviews were conducted, and data were analyzed using an interpretive qualitative methodology. FINDINGS: Findings revealed that digital stories were cathartic; reconnected individuals with family, friends, and parts of their lives that had been interrupted from cancer therapy; helped participants reflect in a way that was often described as therapeutic; and bridged communication with others about their cancer experiences. IMPLICATIONS FOR NURSING: Digital stories can be used to highlight the immense psychosocial impact of cancer and point healthcare professionals and other researchers toward creative and nontraditional ways to address this issue.

Assessing the credibility and transferability of the patient compassion model in non-cancer palliative populations.

BACKGROUND: A lack of evidence and psychometrically sound measures of compassion necessitated the development of the first known, empirically derived, theoretical Patient Compassion Model (PCM) generated from qualitative interviews with advanced cancer inpatients. We aimed to assess the credibility and transferability of the PCM across diverse palliative populations and settings. METHODS: Semi-structured, audio-recorded qualitative interviews were conducted with 20 patients with life-limiting diagnoses, recruited from 4 settings (acute care, homecare, residential care, and hospice). Participants were first asked to share their understandings and experiences of compassion. They were then presented with an overview of the PCM and asked to determine whether: 1) the model resonated with their understanding and experiences of compassion; 2) the model required any modification(s); 3) they had further insights on the model's domains and/or themes. Members of the research team analyzed the qualitative data using constant comparative analysis. RESULTS: Both patients' personal perspectives of compassion prior to viewing the model and their specific feedback after being provided an overview of the model confirmed the credibility and transferability of the PCM. While new codes were incorporated into the original coding schema, no new domains or themes emerged from this study sample. These additional codes provided a more comprehensive understanding of the nuances within the domains and themes of the PCM that will aid in the generation of items for an ongoing study to develop a patient reported measure of compassion. CONCLUSIONS: A diverse palliative patient population confirmed the credibility and transferability of the PCM within palliative care, extending the rigour and applicability of the PCM that was originally developed within an advanced cancer population. The views of a diverse palliative patient population on compassion helped to validate previous codes and supplement the existing coding schema, informing the development of a guiding framework for the generation of a patient-reported measure of compassion.

Spiritual Distress Within Inpatient Settings-A Scoping Review of Patients' and Families' Experiences.

CONTEXT: Spiritual distress contributes to patients' and families' experiences of care. OBJECTIVES: To map the literature on how seriously ill patients and their family members experience spiritual distress within inpatient settings. METHODS: Our scoping review included four databases using search terms "existential" or "spiritual" combined with "angst," "anxiety," "distress," "stress," or "anguish." We included original research describing experiences of spiritual distress among adult patients or family members within inpatient settings and instrument validation studies. Each study was screened in duplicate for inclusion, and the data from included articles were extracted. Themes were identified, and data were synthesized. RESULTS: Within the 37 articles meeting inclusion criteria, we identified six themes: conceptualizing spiritual distress (n = 2), diagnosis and prevalence (n = 7), assessment instrument development (n = 5), experiences (n = 12), associated variables (n = 12), and barriers and facilitators to clinical support (n = 5). The majority of studies focused on patients; two studies focused on family caregivers. The most common clinical settings were oncology (n = 19) and advanced disease (n = 19). Terminology to describe spiritual distress varied among studies. The prevalence of at least moderate spiritual distress in patients was 10%-63%. Spiritual distress was experienced in relation to self and others. Associated variables included demographic, physical, cognitive, and psychological factors. Barriers and facilitators were described. CONCLUSION: Patients' and families' experiences of spiritual distress in the inpatient setting are multifaceted. Important gaps in the literature include a narrow spectrum of populations, limited consideration of family caregivers, and inconsistent terminology. Research addressing these gaps may improve conceptual clarity and help clinicians better identify spiritual distress.

Healthcare providers' perspectives on perceived barriers and facilitators of compassion: Results from a grounded theory study.

AIMS AND OBJECTIVES: To explore healthcare provider perspectives and experiences of perceived barriers and facilitators of compassion. BACKGROUND: Compassion is considered a component of quality health care that healthcare providers are increasingly expected to provide. While there have been some studies exploring facets of healthcare providers' perspectives on the barriers and facilitators to providing compassion, a comprehensive understanding based on direct reports from healthcare providers is lacking. DESIGN: Data were collected via focus groups and semi-structured interviews. Data was analyzed in accordance with Straussian grounded theory. METHODS: Semistructured focus groups with frontline healthcare providers and individual interviews with peer-nominated exemplary compassionate care providers were audio-recorded, professionally transcribed and analysed. Fifty-seven participants were recruited from three healthcare settings within both rural and urban settings in Alberta, Canada, using convenience, snowball and theoretical sampling. RESULTS: Qualitative analysis of the data generated two categories and associated themes and subthemes delineating perceived barriers and facilitators to compassion. The first category, challenges to compassion, reflects participants' discomfort associating the notion of barriers to compassion and contained several themes participants conceptualised as challenges: personal challenges, relational challenges, systemic challenges and maladaptive responses. The second category, facilitators of compassion, included the themes of personal facilitators, relational facilitators, systemic facilitators and adaptive responses of intentional action. CONCLUSION: Although participants described certain factors such as system and time constraints along with interaction styles of patients and families that can challenge healthcare provider compassion, these challenges were not considered insurmountable. While acknowledging these as challenges, participants identified healthcare providers themselves, including their responses towards the identified challenges of compassion, as significant factors in this process-a novel finding from this study. This study provides insight into healthcare providers' perspectives on the notion of barriers and facilitators in the provision of compassion. RELEVANCE TO CLINICAL PRACTICE: This study provides a blueprint for optimising compassion on a personal, relational and system level.

Patients' and caregivers' needs, experiences, preferences and research priorities in spiritual care: A focus group study across nine countries.

BACKGROUND: Spiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited. AIM: To explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers. DESIGN: Focus group study. SETTING/PARTICIPANTS: Separate patient and caregiver focus groups were conducted at 11 sites in South Africa, Kenya, South Korea, the United States, Canada, the United Kingdom, Belgium, Finland and Poland. Discussions were transcribed, translated into English and analysed thematically. RESULTS: A total of 74 patients participated: median age 62 years; 53 had cancer; 48 were women. In total, 71 caregivers participated: median age 61 years; 56 were women. Two-thirds of participants were Christian. Five themes are described: patients' and caregivers' spiritual concerns, understanding of spirituality and its role in illness, views and experiences of spiritual care, preferences regarding spiritual care, and research priorities. Participants reported wide-ranging spiritual concerns spanning existential, psychological, religious and social domains. Spirituality supported coping, but could also result in framing illness as punishment. Participants emphasised the need for staff competence in spiritual care. Spiritual care was reportedly lacking, primarily due to staff members' de-prioritisation and lack of time. Patients' research priorities included understanding the qualities of human connectedness and fostering these skills in staff. Caregivers' priorities included staff training, assessment, studying impact, and caregiver's spiritual care needs. CONCLUSION: To meet patient and caregiver preferences, healthcare providers should be able to address their spiritual concerns. Findings should inform patient- and caregiver-centred spiritual care provision, education and research.

Broadening End-of-Life Comfort to Improve Palliative Care Practices in Long Term Care.

This study aimed to (1) explore how palliative care in long-term care (LTC) addresses the tensions associated with caring for the living and dying within one care community, and (2) to inform how palliative care practices may be improved to better address the needs of all residents living and dying in LTC as well as those of the families and support staff. This article reports findings from 19 focus groups and 117 participants. Study findings reveal that LTC home staff, resident, and family perspectives of end-of-life comfort applied to those who were actively dying and to their families. Our findings further suggest that eliciting residents' perceptions of end-of-life comfort, sharing information about a fellow resident's death more personally, and ensuring that residents, families, and staff can constructively participate in providing comfort care to dying residents could extend the purview of end-of-life comfort and support expanded integration of palliative principles within LTC.

State of the Science of Spirituality and Palliative Care Research Part I: Definitions, Measurement, and Outcomes.

The State of the Science in Spirituality and Palliative Care was convened to address the current landscape of research at the intersection of spirituality and palliative care and to identify critical next steps to advance this field of inquiry. Part I of the SOS-SPC two-part series focuses on questions of 1) What is spirituality? 2) What methodological and measurement issues are most salient for research in palliative care? And 3) What is the evidence relating spirituality and health outcomes? After describing current evidence we make recommendations for future research in each of the three areas of focus. Results show wide variance in the ways spirituality is operationalized and the need for definition and conceptual clarity in research in spirituality. Furthermore, the field would benefit from hypothesis-driven outcomes research based on a priori specification of the spiritual dimensions under investigation and their longitudinal relationship with key palliative outcomes, the use of validated measures of predictors and outcomes, and rigorous assessment of potential confounding variables. Finally, results highlight the need for research in more diverse populations.