The initial validation of an Evidence-informed, competency-based, Applied Compassion Training (EnACT) program: a multimethod study.

INTRODUCTION: Compassion is positively associated with improved patient outcomes, quality care ratings, and healthcare provider wellbeing. Supporting and cultivating healthcare providers' compassion through robust and meaningful educational initiatives has been impeded by a lack of conceptual clarity, inadequate content coverage across the domains of compassion, and the lack of validated evaluation tools. The EnACT program aims to address these gaps through an Evidence-informed, competency-based, Applied, Compassion Training program delivered to healthcare providers working in various clinical settings. In this study, we describe the development and initial validation of the program, which will inform and be further evaluated in a forthcoming Randomised Controlled feasibility Trial (RCfT). METHOD: A multimethod design was used to explore learner needs, experiences, and outcomes associated with the program. Pre- and post-training surveys and qualitative interviews (1 month post training) were conducted among twenty-six healthcare provider learners working in acute care and hospice. Quantitative measures assessed professional fulfillment/burnout, self-confidence in providing compassion, learner satisfaction, and compassion competence. Qualitative interviews explored learners' experiences of the program, integration of learnings into their professional practice, and program recommendations. RESULTS: Learners exhibited relatively high self-assessed compassion competence and professional fulfillment pre-training and low levels of burnout. Post-training, learners demonstrated high levels of compassion confidence and satisfaction with the training program. Despite high levels of reported compassion competence pre-training, a statistically significant increase in post-training compassion competence was noted. Thematic analysis identified five key themes associated with learners' overall experience of the training day and integration of the learnings and resources into their professional practice: (1) A beginner's mind: Learner baseline attitudes and assumptions about the necessity and feasibility of compassion training; (2) Learners' experiences of the training program; (3) Learner outcomes: integrating theory into practice; (4) Creating cultures of compassion; and (5) Learner feedback. CONCLUSION: Findings suggest that the EnACT program is a feasible, rigorous, and effective training program for enhancing healthcare provider compassion. Its evidence-based, patient-informed, clinically relevant content; interactive in class exercises; learner toolkit; along with its contextualized approach aimed at improving the clinical culture learners practice holds promise for sustaining learnings and clinical impact over time-which will be further evaluated in a Randomized Controlled feasibility Trial (RCfT).

How family physicians introduce palliative care to patients with chronic illnesses.

OBJECTIVE: Increasing numbers of Canadians living with complex, life-limiting conditions demand high-quality palliative care. Timely access to palliative care can help to reduce stress, improve quality of life, and provide relief for patients and their families. The purpose of this study is to explore the experiences of family physicians (FPs) regarding the decision and process of introducing palliative care to patients with chronic diseases. METHODS: Interpretive description methodology was used to guide the investigation of the research question. Thirteen Calgary Zone FPs participated in individual interviews. Data was collected iteratively and analyzed using constant comparative analysis. RESULTS: Analysis of interviews identified the overarching themes of dignity and empowerment, which describe the experience of FPs introducing palliative care to chronically ill patients. Four subthemes were woven throughout, including the art of conversation, therapeutic relationships, timing, and preparation of the patient and family. DISCUSSION: While the benefits of palliative conversations are widely accepted, a deeper understanding of how FPs can be supported in developing this aspect of their practice is needed. Understanding their experience provides knowledge that can serve as a framework for future education, mentorship, and competency development.

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.

Implementing compassion in pediatric healthcare: A qualitative study of Canadian patients', parents', and healthcare providers' perspectives.

BACKGROUND: Compassion has received significant scholarly attention over the past decade. Research has been largely theoretical, with interventions focused on self-care practices of healthcare providers (HCPs), rather than implementation at a systems level. This study aimed to identify how compassion can be operationalized within pediatric healthcare. DESIGN AND METHODS: Data was analyzed from a secondary dataset of a larger Straussian grounded theory study of perspectives and experiences of compassion in pediatric healthcare. Patients (n = 33); parents (n = 16); and HCPs (n = 17) were asked specifically how compassion could be implemented within the clinical culture and healthcare system. RESULTS: 66 participants generated an operational model of compassion indicating how compassion could be implemented across the organization and larger healthcare system. The data revealed four themes and associated subthemes: teach and train; recognize and reward; measure and report; and embed compassion across the healthcare system. CONCLUSIONS: Improving compassion in pediatric healthcare needs to extend beyond the efforts of individual HCPs. Compassion is the responsibility of the entire healthcare system and needs to traverse the patient and family experience. In addition to embedding compassion in policy, procedures, practice, and education, compassion should be considered a performance indicator that is measured and reported. PRACTICE IMPLICATIONS: This study provides a preliminary framework for organizational leaders to operationalize compassion across the services, structures, polices, procedures and practices of pediatric healthcare. This includes ongoing compassion training across the organization; assessing compassion, recognizing compassion as a performance indicator, and ensuring that the infrastructure and ancillary services of the organization reflect compassion.

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.

Reducing emergency department utilization for outpatient acute cancer symptoms: An integrative review on the advent of urgent cancer clinics.

The purpose of this integrative literature review was to identify nursing research opportunities related to outpatient acute cancer symptom management within emerging urgent cancer clinics (UCCs). Patients with acute cancer symptoms (e.g., fevers, gastrointestinal disturbances, or uncontrolled pain) from ambulatory settings predominantly rely on emergency departments (EDs) for assessment and treatment. However, this model of care is no longer sustainable and emphasizes healthcare system inefficiencies. Urgent cancer clinics allow patients to have these symptoms treated by oncology experts within ambulatory cancer centres. Unfortunately, limited research on urgent cancer clinics both operationally and experientially makes it difficult for others to adopt this new model of care. The core questions that guided this integrative review were: 1) What is the state of the science regarding UCCs, and what differences exist when compared to EDs in the management of outpatient acute cancer symptoms? and 2) Where do UCCs exist around the world, and what is understood about UCCs related to clinic operations and staffing models?

Meaningful Messages From Grief Workshop Participants: A Constructivist Grounded Theory Study.

Although there is an increased need for delivery of bereavement care, many health care providers in acute care hospital settings feel inadequately prepared to deliver quality grief support, have lack of time, and have inexperience in provision of bereavement care. As a result, although families would like health care providers to offer bereavement support, they are inadequately trained and susceptible to burnout, resulting in families not having their needs met. The purpose of this qualitative study was to uncover the social process occurring in a bereavement education workshop titled "How to Care, What to Say" offered to health care providers. The goal of the workshop was to improve delivery of care for the dying and their family by providing holistic care to the family before, during, and after the death of a loved one. Past grief workshop participants who cared for the bereaved were interviewed, and data were analyzed and synthesized using constructivist grounded theory. Individual interviews and focus group data revealed participants' perceptions, learnings, and potential integration of the workshop into practice. The overarching theory of providing bereavement care that emerged from the data is "a relational process of understanding knowledge, self-awareness, moral responsibilities, and advancing grief competencies of providing holistic grief support."

Influence of clinical context on interpretation and use of an advance care planning policy: a qualitative study.

BACKGROUND: Advance care planning is a process through which people share their values, goals and preferences regarding future medical treatments with the purpose of aligning care received with patient wishes. The objective of this study was to explore perspectives from patients and clinicians in 4 clinical settings to understand how context influences interpretation and application of advance care planning processes. METHODS: This study used a qualitative interpretive descriptive design. Patient and clinician participants were recruited across 4 clinical outpatient settings (cancer, heart failure, renal failure and supportive living) in Calgary and Edmonton. Data were collected between 2014 and 2015 by means of recorded one-on-one semistructured interviews. We analyzed the data using thematic analysis in 2016-2017. RESULTS: Thirty-four patients and 34 clinicians participated in interviews. Themes common to all 4 contexts were lack of shared understanding between patients and clinicians, and a lack of consistent clinical process related to advance care planning. Advance care planning understanding and process varied substantially between contexts. This variation seemed to be driven by differences in perceptions around disease burden and the nature of the physician-patient relationship. INTERPRETATION: Provision of a system-wide policy and procedural framework alone was not found to be sufficient to form a standardized approach to advance care planning, as considerable variability existed in advance care planning process between and within clinical settings. Quality-improvement methods that consider local processes, gaps and barriers can help in developing a consistent, comprehensive process.

Perspectives on advance care planning in haematopoietic stem cell transplantation: a qualitative study.

BACKGROUND: Advance care planning (ACP) engagement and completion of advance directives remain low in patients undergoing haematopoietic stem cell transplantation, despite the high risk of treatment-related mortality. AIM: To understand the barriers to and facilitators of ACP in haematopoietic stem cell transplantation. METHODS: This qualitative study used interpretive description methodology. The researchers conducted audio-recorded semi-structured interviews with participants. The constant comparative method was used to analyse data. RESULTS: A total of six patients, five family members and eight clinicians participated in the study. Perceived barriers to ACP included: lack of time, lack of process, lack of understanding of disease/treatment and ACP, need to keep positive and prognostic uncertainty. Potential facilitators of ACP included: early and frequent discussion of ACP, incorporating ACP into routine care, involvement of the multidisciplinary team and framing discussions on ACP as positive. CONCLUSIONS: Haematopoietic stem cell transplantation poses unique challenges for patients, families and clinicians when it comes to ACP. Introducing advance care planning as part of standard care and providing ongoing facilitation of ACP, including discussion of disease and treatment expectations at the outset and when complications arise may assist patients and families in recognising how ACP can fit into and enhance their care.

A qualitative study of pregnancy-related anxiety among women in Tanzania.

OBJECTIVES: To explore and understand the experiences and priorities of pregnant women living with fears and worries related to fetal/infant and maternal health, the birthing process and ability to parent the infant (ie, pregnancy-related anxiety (PRA)) in Mwanza, Tanzania. DESIGN: Descriptive phenomenological approach. SETTING: Two clinics in the Ilemela and Nyamagana districts of Mwanza. PARTICIPANTS: Pregnant and postpartum women who obtained high scores on a PRA scale during pregnancy in a larger quantitative study were contacted to participate in an interview (10 women, aged 18-34 years; 3 HIV positive). MEASURES: Semi-structured interviews were undertaken, with guiding questions related to the women's experience during pregnancy. The Colaizzi method was used with transcripts that had been translated and back translated from Swahili to English and then hand-coded by the interviewer, with independent review by another researcher to verify the analysis. RESULTS: PRA, as experienced by women in Mwanza, was a state of worry and concern, often causing physical symptoms, and disrupting personal sense of peace. While some themes in the women's experiences reflected the domains examined in the PRA scale used to identify potential participants, others such as lack of knowledge, partner relationship, interactions with the healthcare system, spirituality and fear of HIV/AIDS were otherwise missing. Their prominence in the participants' stories broadens our understanding of PRA. CONCLUSIONS: The realities and viewpoints of women in low-income and middle-income countries (LMIC) experiencing PRA are still relatively unknown. The findings from this study provided much-needed insight into the perspectives and priorities of women in Mwanza who have experienced PRA and further support the need to explore this phenomenon in other LMIC. The additional domains identified reinforce the need for a PRA tool that accurately and adequately capture the complexities of PRA for women in this region.

Staying theoretically sensitive when conducting grounded theory research.

Background Grounded theory (GT) is founded on the premise that underlying social patterns can be discovered and conceptualised into theories. The method and need for theoretical sensitivity are best understood in the historical context in which GT was developed. Theoretical sensitivity entails entering the field with no preconceptions, so as to remain open to the data and the emerging theory. Investigators also read literature from other fields to understand various ways to construct theories. Aim To explore the concept of theoretical sensitivity from a classical GT perspective, and discuss the ontological and epistemological foundations of GT. Discussion Difficulties in remaining theoretically sensitive throughout research are discussed and illustrated with examples. Emergence - the idea that theory and substance will emerge from the process of comparing data - and staying open to the data are emphasised. Conclusion Understanding theoretical sensitivity as an underlying guiding principle of GT helps the researcher make sense of important concepts, such as delaying the literature review, emergence and the constant comparative method (simultaneous collection, coding and analysis of data). Implications for practice Theoretical sensitivity and adherence to the GT research method allow researchers to discover theories that can bridge the gap between theory and practice.

Compassion: a scoping review of the healthcare literature.

BACKGROUND: Recent concerns about suboptimal patient care and a lack of compassion have prompted policymakers to question the preparedness of clinicians for the challenging environment in which they practice. Compassionate care is expected by patients and is a professional obligation of clinicians; however, little is known about the state of research on clinical compassion. The purpose of this scoping review was to map the literature on compassion in clinical healthcare. METHODS: Searches of eight electronic databases and the grey literature were conducted to identify empirical studies published over the last 25 years. Eligible studies explored perceptions or interventions of compassionate care in clinical populations, healthcare professionals, and healthcare students. Following the title and abstract review, two reviewers independently screened full-texts articles, and extracted study data. A narrative approach to synthesizing and mapping the literature was used. RESULTS AND DISCUSSION: Of 36,637 records, 648 studies were retrieved and 44 studies were included in the review. Less than one third of studies included patients. Six themes emerged from studies that explored perceptions of compassionate care: nature of compassion, development of compassion, interpersonal factors related to compassion, action and practical compassion, barriers and enablers of compassion, and outcomes of compassion. Intervention studies included two compassionate care trials with patients and eight educational programs that aimed to improve compassionate care in clinicians and students. CONCLUSIONS: This review identifies the limited empirical understanding of compassion in healthcare, highlighting the lack of patient and family voices in compassion research. A deeper understanding of the key behaviors and attitudes that lead to improved patient-reported outcomes through compassionate care is necessary.

'Not yet' and 'Just ask': barriers and facilitators to advance care planning--a qualitative descriptive study of the perspectives of seriously ill, older patients and their families.

OBJECTIVES: To explore seriously ill, older hospitalised patients' and their family members' perspectives on the barriers and facilitators of advance care planning (ACP). METHODS: We used qualitative descriptive study methodology to analyse data from an interviewer administered, questionnaire-based, Canadian multicentre, prospective study of this population. RESULTS: Three main categories described these barriers and facilitators: (1) person (beliefs, attitudes, experiences, health status), (2) access (to doctors and healthcare providers, information, tools and infrastructure to communicate ACP preferences) and (3) the interaction with the doctor (who and how initiated, location, timing, quality of communication, relationship with doctor). CONCLUSIONS: Based on the findings, we suggest strategies for both healthcare systems and individual healthcare providers to improve the quality and quantity of ACP with this population. These include assessing readiness for participation in ACP and personalising relevance of ACP to each individual, routinely offering scheduled family meetings for exploring a person's own goals and sharing information, ensuring systems and policies are in place to access previous ACP documentation and ensuring doctors' education includes ACP communication skills.

Using critical ethnography to explore issues among immigrant and refugee women seeking help for postpartum depression.

Critical ethnography was used as a pragmatic research methodology to explore the postpartum depression (PPD) experiences of immigrant and refugee women. We examined the social, political, economic, and historical factors that affected the help-seeking behavior of these women during PPD episodes. The critical ethnography method allowed participants to share their experiences with each other and afforded opportunities to the researchers to acknowledge and validate, rather than simply observe and record, their testimony. This study of PPD thus increased our awareness and understanding of the health issues of immigrant and refugee women.

Spiritual care: how to do it.

OBJECTIVE: This study explores the provision of spiritual care by healthcare professionals working at the end of life. DESIGN: Qualitative-ethnographic inquiry. SETTING: Phase 1: five Canadian sites; phase 2: a residential hospice in Alberta, Canada. PARTICIPANTS: Phase 1: six palliative care leaders; phase 2: 24 frontline palliative care clinicians. RESULTS: Data were collected over a 12-month period with analysis of findings occurring concurrently. Using semistructured interviews and participant observation, 11 themes, organised under five overarching categories, emerged from the data. Five bedside skills were identified as essential to spiritual care: hearing, sight, speech, touch and presence. The integration of these bedside skills with the intrinsic qualities of healthcare professionals, including their values and spiritual beliefs, appeared to be essential to their application in spiritual care. Spiritual care primarily involved the tacit qualities of healthcare professionals and their effect on patient's spiritual well-being, rather than their explicit technical skill set or expert knowledge base. CONCLUSION: Participants identified spiritual care as both a specialised care domain and as a philosophy of care that informs and is embedded within physical and psychosocial care. Hearing, sight, speech, touch and presence were identified as the means by which healthcare professionals impacted patients' spiritual well-being regardless of clinician's awareness or intent. An empirical framework is presented providing clinicians with a pragmatic way of incorporating spiritual care into clinical practice.