Role matters in understanding 'quality' in palliative care: a qualitative analysis of patient, caregiver and practitioner perspectives.

OBJECTIVES: To compare the discussions from two panels on the concept of palliative care quality for patients with advanced cancer, exploring the priorities reflected in each group's perspectives. DESIGN: We convened two RAND-UCLA appropriateness panel discussions on palliative care quality in advanced cancer. Discussions were audio-recorded and transcribed verbatim. Panel transcripts were analysed thematically using a matrix approach to examine perceptions and experiences of quality. SETTING: Discussions were framed within the context of advanced cancer care and palliative care. PARTICIPANTS: The patient-caregiver panel had 9 patients with current or a history of cancer and caregivers, and the practitioner panel had 10 expert practitioners representing fields of oncology, primary care, social work, palliative care, nursing, pain management and ethics. RESULTS: Our analysis identified three thematic categories for understanding quality common across both groups and nine subthemes within those categories. At the highest level, quality was conceived as: (1) the patient and caregiver experience of care, (2) technical competence and (3) the structure of health system. Among the subthemes, four were present in only one of the two group's discussions: 'purpose and action' was specific to the patient-caregiver panel, whereas 'adhering to best medical practice', 'mitigating unintended consequences and side effects', and 'health system resources and costs' were specific to the practitioner panel. CONCLUSIONS: While both panels aligned on the three key domains of quality, the particular dimensions through which they perceived quality varied in relation to their experience and role as a professional provider of care versus recipient of healthcare services. These differences suggest the importance of adopting a collaborative approach to quality measurement and improvement so that the values of all interested parties are represented in improvement efforts.

What Patients Facing Cancer and Caregivers Want From Communication in Times of Crisis: A Qualitative Study in the Early Months of the COVID-19 Pandemic.

BACKGROUND: Interpersonal communication is a cornerstone of patient-centered care. We aimed to identify what patients with cancer and caregivers may want from communication during a public health crisis. METHODS: We interviewed 15 patients (8 Veteran, 7 non-Veteran) and caregivers from regionally, racially, and ethnically diverse backgrounds across the US about serious illness care and quality of care during the COVID-19 pandemic Using an iterative, inductive and deductive process, 2 coders analyzed content associated with the code "Communication," which appeared 71 times, and identified 5 themes. RESULTS: Participants identified as White (10), Latino/a (3), Asian (1), and Black (1). (1) Help patients and caregivers prepare for care during crisis by communicating medical information directly and proactively. (2) Explain how a crisis might influence medical recommendations and impact on recovery from illness. (3) Use key messengers to improve communication between primary teams, patients, and caregivers. (4) Include caregivers and families in communication when they cannot be physically present. (5) Foster bidirectional communication with patients and families to engage them in shared decision-making during a vulnerable time. CONCLUSION: Communication is critical during a public health crisis yet overwhelmed clinicians may not be able to communicate effectively. Communicating with caregivers and family, transparent and timely communication, ensuring diverse providers are on the same page, and effective listening are known gaps even before the COVID-19 pandemic. Clinicians may need quick interventions, like education about goals of care, to remind them about what seriously ill patients and their caregivers want from communication and offer patient-centered care during crises.

Education About Specialty Palliative Care Among Nonhealthcare Workers: A Systematic Review.

CONTEXT: Despite the expansion of palliative care (PC) services, the public has little knowledge and holds misperceptions about PC, creating barriers to accessing timely specialty PC. OBJECTIVES: To systematically review the evidence regarding the efficacy of educational interventions to improve knowledge and attitudes about PC among nonhealthcare workers. METHODS: We searched five databases (PubMed/MEDLINE, Embase, CIANHL, Web of Science, and Scopus) for studies investigating educational interventions about specialty PC in adults who identified as patients, caregivers, or members of the public. We included studies that were available in English and had a comparator group. We excluded studies that only sampled health professionals or children. We used the Mixed Methods Appraisal Tool to assess quality and risk of bias. RESULTS: Of 12,420 records identified, we screened 5948 abstracts and assessed 526 full texts for eligibility. Twenty-one articles were extracted for analysis, representing 20 unique educational interventions. Common methodologies included quasi-experimental (9, 45%), randomized controlled trial (4, 20%), and nonrandomized trial (2, 10%). Common components of the educational interventions included video presentations (9, 45%), written materials (8, 40%), and lectures (4, 20%). Content included definition (14, 70%) and philosophy (14, 70%) of PC, distinctions between PC and hospice (11, 55%), and eligibility for PC (11, 55%). Fourteen (70%) interventions showed statistically significant positive differences in either knowledge or attitudes about PC. CONCLUSIONS: While educational interventions can positively impact knowledge and attitudes about PC among nonhealthcare workers, more research is needed to inform the design, delivery, and evaluation of interventions to increase knowledge and attitudes about PC.

Interdisciplinary interventions that improve patient-reported outcomes in perioperative cancer care: A systematic review of randomized control trials.

INTRODUCTION: Interdisciplinary teams are often leveraged to improve quality of cancer care in the perioperative period. We aimed to identify the team structures and processes in interdisciplinary interventions that improve perioperative patient-reported outcomes for patients with cancer. METHODS: We searched PubMed, EMBASE, and CINAHL for randomized control trials published at any time and screened 7,195 articles. To be included in our review, studies needed to report patient-reported outcomes, have interventions that occur in the perioperative period, include surgical cancer treatment, and include at least one non physician intervention clinical team member: advanced practice providers, including nurse practitioners and physician assistants, clinical nurse specialists, and registered nurses. We narratively synthesized intervention components, specifically roles assumed by intervention clinical team members and interdisciplinary team processes, to compare interventions that improved patient-reported outcomes, based on minimal clinically important difference and statistical significance. RESULTS: We included 34 studies with a total of 4,722 participants, of which 31 reported a clinically meaningful improvement in at least one patient-reported outcome. No included studies had an overall high risk of bias. The common clinical team member roles featured patient education regarding diagnosis, treatment, coping, and pain/symptom management as well as postoperative follow up regarding problems after surgery, resource dissemination, and care planning. Other intervention components included six or more months of continuous clinical team member contact with the patient and involvement of the patient's caregiver. CONCLUSIONS: Future interventions might prioritize supporting clinical team members roles to include patient education, caregiver engagement, and clinical follow-up.

Facilitators of palliative care quality improvement team cohesion: Lessons from a seven-site implementation project in India.

BACKGROUND: The Palliative Care: Promoting Access and Improvement of the Cancer Experience (PC-PAICE) initiative is a team-based, palliative care (PC) quality improvement (QI) project working to promote high-quality PC in India. As a PC QI initiative, PC-PAICE implementation relied upon building interdisciplinary teams, providing the ideal context for understanding facilitators of team cohesion that compelled clinical, organizational, and administrative team members to work together. There is an opportunity to leverage the intersection between QI implementation and organizational theory to inform and improve implementation science. PURPOSE: As a subaim of a larger implementation evaluation, we aimed to identify facilitators of team cohesion within QI implementation context. METHODOLOGY: A quota sampling approach captured the perspectives of 44 stakeholders across three strata (organizational leaders, clinical leaders, and clinical team members) from all seven sites through a semistructured interview guide informed by the Consolidated Framework for Implementation Research (CFIR). We used a combination of inductive and deductive approaches informed by organizational theory to identify facilitators. RESULT: We identified three facilitators of PC team cohesion: (a) balancing formalization and flexibility around team roles, (b) establishing widespread awareness of the QI project, and (c) prioritizing a nonhierarchical organizational culture. PRACTICE IMPLICATIONS: Leveraging CFIR to analyze PC-PAICE stakeholder interviews created a data set conducive to understanding complex multisite implementation. Layering role and team theory to our implementation analysis helped us identify facilitators of team cohesion across levels within the team (bounded team), beyond the team (teaming), and surrounding the team (culture). These insights demonstrate the value of team and role theories in implementation evaluation efforts.

Quality Improvement in Itself Changes Your Thinking: Lessons From Disseminating Quality Improvement Methods Through a Multisite International Collaborative Palliative Care Project in India.

PURPOSE: Seven major palliative care (PC) centers in India were mentored through the Palliative Care-Promoting Assessment and Improvement of the Cancer Experience (PC-PAICE) by US and Australian academic institutions to implement a quality improvement (QI) project to improve the accessibility and quality of PC at their respective centers. The objective was to evaluate the experiences of teams in implementing QI methods across diverse geographical settings in India. METHODS: A quota sampling approach was used to elicit perspectives of local stakeholders at each site. The Consolidated Framework for Implementation Research informed development of a semistructured interview guide. Analysis leveraged deductive and inductive approaches. RESULTS: We interviewed 44 participants (eight organizational leaders, 12 clinical leaders, and 24 team members) at seven sites and identified five themes. (1) Implementing QI methods enabled QI teams to think analytically to solve a complex problem and to identify resources. (2) Developing a problem statement by identifying specific gaps in patient care fostered team collaboration toward a common goal. (3) Making use of QI tools (eg, A3 process) systematically provided a new, straightforward QI toolkit and improved QI teams' conceptual understanding. (4) Enhancing stakeholder engagement allowed shared understanding of QI team members' roles and processes and shaped interventions tailored to the local context. (5) Designing less subjective processes for patient care such as assessment scales to identify patient's symptomatic needs positively changed work practices and culture. CONCLUSION: Engaging and empowering multiple stakeholders to use QI methods facilitated the expansion and improvement of PC and cancer services in India. PC-PAICE demonstrated an efficient, effective way to apply QI methods in an international context. The impact of PC-PAICE is being magnified by developing a cadre of Indian QI leaders.

Empowering families to take on a palliative caregiver role for patients with cancer in India: Persistent challenges and promising strategies.

BACKGROUND: The population of patients with cancer requiring palliative care (PC) is on the rise in India. Family caregivers will be essential members of the care team in the provision of PC. OBJECTIVE: We aimed to characterize provider perspectives of the challenges that Indian families face in taking on a palliative caregiving role. METHOD: Data for this analysis came from an evaluation of the PC-PAICE project, a series of quality improvement interventions for PC in India. We conducted 44 in-depth semi-structured interviews with organizational leaders and clinical team members at seven geographically and structurally diverse settings. Through thematic content analysis, themes relating to the caregivers' role were identified using a combination of deductive and inductive approaches. RESULT: Contextual challenges to taking up the PC caregiving role included family members' limited knowledge about PC and cancer, the necessity of training for caregiving responsibilities, and cultural preferences for pursuing curative treatments over palliative ones. Some logistical challenges include financial, time, and mental health limitations that family caregivers may encounter when navigating the expectations of taking on the caregiving role. Strategies to facilitate family buy-in for PC provision include adopting a family care model, connecting them to services provided by Non-Governmental Organizations, leveraging volunteers and social workers to foster PC awareness and training, and responding specifically to family's requests. CONCLUSION: Understanding and addressing the various challenges that families face in adopting the caregiver role are essential steps in the provision and expansion of PC in India. Locally initiated quality improvement projects can be a way to address these challenges based on the context.

Considerations for Fostering Palliative Care Awareness in Developing Contexts: Strategies From Locally Initiated Projects in India.

CONTEXT: Lack of palliative care (PC) awareness is a barrier to its utilization in developing contexts. OBJECTIVES: To identify and understand strategies that changed awareness of the concepts and value of palliative care in a multi-site quality improvement project in India. METHODS: The Palliative Care - Promoting Assessment and Improvement of the Cancer Experience (PC-PAICE) evaluation team conducted 44 semi-structured interviews with clinician and organization stakeholders at seven geographically dispersed sites. We used inductive and deductive approaches in this secondary analysis to identify emerging themes. RESULTS: We identified the following strategies to improve awareness of concepts and value of palliative care. Strategy 1: Educate medical trainees, staff, and the community about palliative care and its concepts. Sub-strategies: Participate in community events. Integrate PC concepts into early medical education. Standardize training for practitioners. Strategy 2: Design and disseminate India-specific research to reinforce awareness of the value of palliative care. Sub-strategies: Publish and use India-specific palliative care research. Strategy 3: Facilitate communication between providers and departments to improve awareness of palliative care services and its concepts. Sub-strategies: Create referral frameworks and network with providers referring to palliative care to change awareness of available services and palliative care concepts. CONCLUSION: To increase palliative care utilization, program development can include community and provider-focused efforts on awareness of the concepts and value of palliative care. These three strategies held salience across sites representing diverse Indian geographic and cultural settings; as such, they may be applicable to other contexts.