'Confidence and fulfillment': a qualitative descriptive study exploring the impact of palliative care training for long-term care physicians and nurses.

Objective: To explore the impact of a 2-day, in-person interprofessional palliative care course for staff working in long-term care (LTC) homes. Methods: A qualitative descriptive study design was employed. LTC staff who had participated in Pallium Canada's Learning Essential Approaches to Palliative Care LTC Course in Ontario, Canada between 2017 and 2019 were approached. Semi-structured interviews were conducted, using an online videoconferencing platform in mid-2021 in Ontario, Canada. These were done online, recorded, and transcribed. Data were coded inductively. Results: Ten persons were interviewed: four registered practical nurses, three registered nurses, one nurse practitioner, and two physicians. Some held leadership roles. Participants described ongoing impact on themselves and their ability to provide end-of-life (EOL) care (micro-level), their services and institutions (meso-level), and their healthcare systems (macro-level). At a micro-level, participants described increased knowledge and confidence to support residents and families, and increased work fulfillment. At the meso-level, their teams gained increased collective knowledge and greater interprofessional collaboration to provide palliative care. At the macro level, some participants connected with other LTC homes and external stakeholders to improve palliative care across the sector. Training provided much-needed preparedness to respond to the impact of the COVID-19 pandemic, including undertaking advance care planning and EOL conversations. The pandemic caused staff burnout and shortages, creating challenges to applying course learnings. Significance of results: The impact of palliative care training had ripple effects several years after completing the training, and equipped staff with key skills to provide care during the COVID-19 pandemic. Palliative care education of staff remains a critical element of an overall strategy to improve the integration of palliative care in LTC.

Providing palliative and end-of-life care in long-term care during the COVID-19 pandemic: a qualitative study of clinicians' lived experiences.

BACKGROUND: A disproportionate number of COVID-19-related deaths in Canada occurred in long-term care homes, affecting residents, families and staff alike. This study explored the experiences of long-term care clinicians with respect to providing palliative and end-of-life care during the COVID-19 pandemic. METHODS: We used a qualitative research approach. Long-term care physicians and nurse practitioners (NPs) in Ontario, Canada, participated in semistructured interviews between August and September of 2021. Interviews were undertaken virtually, and results were analyzed using thematic analysis. RESULTS: Twelve clinicians (7 physicians and 5 NPs) were interviewed. We identified 5 themes, each with several subthemes: providing a palliative approach to care, increased work demands and changing roles, communication and collaboration, impact of isolation and visitation restrictions, and impact on the providers' personal lives. Clinicians described facing several concurrent challenges, including the uncertainty of COVID-19 illness, staffing and supply shortages, witnessing many deaths, and distress caused by isolation. These resulted in burnout and feelings of moral distress. Previous training and integration of the palliative care approach in the long-term care home, access to resources, increased communication and interprofessional collaboration, and strong leadership mitigated the impact and led to improved palliative care and a sense of pride while facing these challenges. INTERPRETATION: The pandemic had a considerable impact on clinicians caring for residents in long-term care homes at the end of life. It is important to address these lived experiences and use the lessons learned to identify strategies to improve palliative care in long-term care homes and reduce the impact of future pandemics with respect to palliative care.

What is Important to Older People with Multimorbidity and Their Caregivers? Identifying Attributes of Person Centered Care from the User Perspective.

INTRODUCTION: Health systems are striving to design and deliver care that is 'person centred'-aligned with the needs and preferences of those receiving it; however, it is unclear what older people and their caregivers value in their care. This paper captures attributes of care that are important to older people and their caregivers. METHODS: This qualitative descriptive study entailed 1-1 interviews with older adults with multimorbidity receiving community based primary health care in Canada and New Zealand and caregivers. Data were analyzed to identify core attributes of care, important to participants. FINDINGS: Feeling heard, appreciated and comfortable; having someone to count on; easily accessing health and social care; knowing how to manage health and what to expect; feeling safe; and being independent were valued. Each attribute had several characteristics including: being treated like a friend; having contact information of a responsive provider; being accompanied to medical and social activities; being given clear treatment options including what to expect; having homes adapted to support limitations and having the opportunity to participate in meaningful hobbies. CONCLUSIONS: Attributes of good care extend beyond disease management. While our findings include activities that characterize these attributes, further research on implementation barriers and facilitators is required.

How does it feel to be a problem? Patients' experiences of self-management support in New Zealand and Canada.

BACKGROUND: The impact of long-term conditions is the "healthcare equivalent to climate change." People with long-term conditions often feel they are a problem, a burden to themselves, their family and friends. Providers struggle to support patients to self-manage. The Practical Reviews in Self-Management Support (PRISMS) taxonomy lists what provider actions might support patient self-management. OBJECTIVE: To offer providers advice on how to support patient self-management. DESIGN: Semi-structured interviews with 40 patient-participants. SETTING AND PARTICIPANTS: Three case studies of primary health-care organizations in New Zealand and Canada serving diverse populations. Participants were older adults with long-term conditions who needed support to live in the community. MAIN OUTCOME MEASURES: Qualitative description to classify patient narratives of self-management support according to the PRISMS taxonomy with thematic analysis to explore how support was acceptable and effective. RESULTS: Patients identified a relationship-in-action as the mechanism, the how by which providers supported them to self-manage. When providers acted upon knowledge of patient lives and priorities, these patients were often willing to try activities or medications they had resisted in the past. Effective self-management support saw PRISMS components delivered in patient-specific combinations by individual providers or teams. DISCUSSION AND CONCLUSIONS: Providers who establish relationships with patients can support them to self-manage and improve health outcomes. Delivery of taxonomy components, in the absence of a relationship, is unlikely to be either acceptable or effective. Providers need to be aware that social determinants of health can constrain patients' options to self-manage.

"You've got to look after yourself, to be able to look after them" a qualitative study of the unmet needs of caregivers of community based primary health care patients.

BACKGROUND: There is growing reliance on unpaid caregivers to provide support to people with care needs. Integrated care approaches that aim to coordinate primary care with community care known as community based primary health care (CBPHC) has been a key policy initiative across health systems; however most attention has been paid to the needs of patients and not caregivers. The objective of this paper was to explore the unmet needs of caregivers of older adults with complex care needs receiving CBPHC. METHODS: This qualitative descriptive study entailed one-to-one interviews with 80 caregivers from Canada and New Zealand where roles, experiences and needs were explored. Interview text related to unmet need was reviewed inductively and core themes identified. RESULTS: Three themes were identified across CBPHC sites: unrecognized role; lack of personal resources; and no breaks even when services are in place. CONCLUSIONS: To support caregivers, models of care such as CBPHC need to look beyond the patient to meaningfully engage caregivers, address their needs and recognize the insight they hold. This knowledge needs to be valued as a key source of evidence to inform developments in health and social care.

mHealth Tools for the Self-Management of Patients With Multimorbidity in Primary Care Settings: Pilot Study to Explore User Experience.

BACKGROUND: Given the complex and evolving needs of individuals with multimorbidity, the adoption of mHealth tools to support self-management efforts is increasingly being explored, particularly in primary care settings. The electronic patient-reported outcomes (ePRO) tool was codeveloped with patients and providers in an interdisciplinary primary care team in Toronto, Canada, to help facilitate self-management in community-dwelling adults with multiple chronic conditions. OBJECTIVE: The objective of study is to explore the experience and expectations of patients with multimorbidity and their providers around the use of the ePRO tool in supporting self-management efforts. METHODS: We conducted a 4-week pilot study of the ePRO tool. Patients' and providers' experiences and expectations were explored through focus groups that were conducted at the end of the study. In addition, thematic analyses were used to assess the shared and contrasting perspectives of patients and providers on the role of the ePRO tool in facilitating self-management. Coded data were then mapped onto the Individual and Family Self-Management Theory using the framework method. RESULTS: In this pilot study, 12 patients and 6 providers participated. Both patients and providers emphasized the need for a more explicit recognition of self-management context, including greater customizability of content to better adapt to the complexity and fluidity of self-management in this particular patient population. Patients and providers highlighted gaps in the extent to which the tool enables self-management processes, including how limited progress toward self-management goals and the absence of direct provider engagement through the ePRO tool inhibited patients from meeting their self-management goals. Providers highlighted proximal outcomes based on their experience of the tool and specifically, they indicated that the tool offered valuable insights into the broader patient context, which helps to inform the self-management approach and activities they recommend to patients, whereas patients recognized the tool's potential in helping to improve access to different providers in a team-based primary care setting. CONCLUSIONS: This study identifies a more explicit recognition of the contextual factors that influence patients' ability to self-manage and greater adaptability to accommodate patient complexity and provider workflow as next steps in refining the ePRO tool to better support self-management efforts in primary care ahead of its application in a full-scale randomized pragmatic trial.

The provider perspective: investigating the effect of the Electronic Patient-Reported Outcome (ePRO) mobile application and portal on primary care provider workflow.

Aim This qualitative study investigates how the Electronic Patient-Reported Outcome (ePRO) mobile application and portal system, designed to capture patient-reported measures to support self-management, affected primary care provider workflows. BACKGROUND: The Canadian health system is facing an ageing population that is living with chronic disease. Disruptive innovations like mobile health technologies can help to support health system transformation needed to better meet the multifaceted needs of the complex care patient. However, there are challenges with implementing these technologies in primary care settings, in particular the effect on primary care provider workflows. METHODS: Over a six-week period interdisciplinary primary care providers (n=6) and their complex care patients (n=12), used the ePRO mobile application and portal to collaboratively goal-set, manage care plans, and support self-management using patient-reported measures. Secondary thematic analysis of focus groups, training sessions, and issue tracker reports captured user experiences at a Toronto area Family Health Team from October 2014 to January 2015. Findings Key issues raised by providers included: liability concerns associated with remote monitoring, increased documentation activities due to a lack of interoperability between the app and the electronic patient record, increased provider anxiety with regard to the potential for the app to disrupt and infringe upon appointment time, and increased demands for patient engagement. Primary care providers reported the app helped to focus care plans and to begin a collaborative conversation on goal-setting. However, throughout our investigation we found a high level of provider resistance evidenced by consistent attempts to shift the app towards fitting with existing workflows rather than adapting much of their behaviour. As health systems seek innovative and disruptive models to better serve this complex patient population, provider change resistance will need to be addressed. New models and technologies cannot be disruptive in an environment that is resisting change.

The Electronic Patient Reported Outcome Tool: Testing Usability and Feasibility of a Mobile App and Portal to Support Care for Patients With Complex Chronic Disease and Disability in Primary Care Settings.

BACKGROUND: People experiencing complex chronic disease and disability (CCDD) face some of the greatest challenges of any patient population. Primary care providers find it difficult to manage multiple discordant conditions and symptoms and often complex social challenges experienced by these patients. The electronic Patient Reported Outcome (ePRO) tool is designed to overcome some of these challenges by supporting goal-oriented primary care delivery. Using the tool, patients and providers collaboratively develop health care goals on a portal linked to a mobile device to help patients and providers track progress between visits. OBJECTIVES: This study tested the usability and feasibility of adopting the ePRO tool into a single interdisciplinary primary health care practice in Toronto, Canada. The Fit between Individuals, Fask, and Technology (FITT) framework was used to guide our assessment and explore whether the ePRO tool is: (1) feasible for adoption in interdisciplinary primary health care practices and (2) usable from both the patient and provider perspectives. This usability pilot is part of a broader user-centered design development strategy. METHODS: A 4-week pilot study was conducted in which patients and providers used the ePRO tool to develop health-related goals, which patients then monitored using a mobile device. Patients and providers collaboratively set goals using the system during an initial visit and had at least 1 follow-up visit at the end of the pilot to discuss progress. Focus groups and interviews were conducted with patients and providers to capture usability and feasibility measures. Data from the ePRO system were extracted to provide information regarding tool usage. RESULTS: Six providers and 11 patients participated in the study; 3 patients dropped out mainly owing to health issues. The remaining 8 patients completed 210 monitoring protocols, equal to over 1300 questions, with patients often answering questions daily. Providers and patients accessed the portal on an average of 10 and 1.5 times, respectively. Users found the system easy to use, some patients reporting that the tool helped in their ability to self-manage, catalyzed a sense of responsibility over their care, and improved patient-centered care delivery. Some providers found that the tool helped focus conversations on goal setting. However, the tool did not fit well with provider workflows, monitoring questions were not adequately tailored to individual patient needs, and daily reporting became tedious and time-consuming for patients. CONCLUSIONS: Although our study suggests relatively low usability and feasibility of the ePRO tool, we are encouraged by the early impact on patient outcomes and generally positive responses from both user groups regarding the potential of the tool to improve care for patients with CCDD. As is consistent with our user-centered design development approach, we have modified the tool based on user feedback, and are now testing the redeveloped tool through an exploratory trial.

A Patient-Centered Transitions Framework for Persons With Complex Chronic Conditions.

Hospitals are under increasing pressures by governing bodies to meet mandated performance standards and fiscal targets. As a result, hospitals are incentivized by funders to discharge patients efficiently and effectively. Gaining insight into the patient experience of discharge, as well as understanding patient needs and concerns, is prudent. Leveraging this knowledge may expedite patient discharge and potentially minimize hospital readmission rates. The purpose of this study was to better understand the discharge experiences and concerns of patients with multiple chronic diseases-a population currently understudied. In this study, qualitative survey data were analyzed from a large scale, mixed methods study that took place in 2011 at Bridgepoint Hospital, a complex continuing care and rehabilitation facility in Toronto, Canada. One hundred and sixteen patients were interviewed individually using a self-designed survey composed of open- and close-ended questions. All data pertaining to hospital discharge were extracted and examined using qualitative descriptive analysis. Key discharge concerns were related to process (next steps in the care plan, friction in the provider-patient relationship, premature discharge), consequences (relocation, impact on family, leaving the comforts and security of the hospital), and needs (availability of home care, managing daily activities, navigating the predisability home). Our findings are presented in a patient-centered framework that can be used as a guide for future discharge strategies for complex patient populations.

"Where do we go from here?" Health system frustrations expressed by patients with multimorbidity, their caregivers and family physicians.

OBJECTIVES: This study explored the care challenges experienced by older patients with multimorbidity, their informal caregivers and family physicians. APPROACH: Semi-structured interviews were conducted with 27 patients, their informal caregivers and family physicians. Qualitative description was used to identify key themes in the interview transcripts. RESULTS: Participants experienced many common challenges when managing multimorbidity, including a lack of decision-making support, poor communication and uncoordinated health services. Within these themes, unique perspectives specific to the role of being a patient, caregiver or family physician emerged. CONCLUSION: The study adds to a limited evidence base on the experience of patients with multimorbidity. By including the perspectives of their family caregivers and physicians, we provide important insight into the management of multimorbidity and recommend the uptake of specific strategies to address them.

Enhancing communication in end-of-life care: a clinical tool translating between the Clinical Frailty Scale and the Palliative Performance Scale.

OBJECTIVES: To create a clinical tool to translate between the Clinical Frailty Scale (CFS), which geriatrics teams use, and Palliative Performance Scale (PPS), which palliative care teams use, to create a common language and help improve communication between geriatric and palliative care teams. DESIGN: Cross-sectional. SETTINGS: Two academic health centers: inpatient palliative care and chronic care units, an outpatient geriatric clinic, and inpatient referrals to a palliative care consultation service. PARTICIPANTS: Older adults (≥65) aged 80.9±8.0, with malignant (51%) and nonmalignant (49%) terminal diagnoses (N=120). MEASUREMENTS: Each participant was assigned four scores: a CFS score each from a geriatric physician and nurse and a PPS score each from a palliative care physician and nurse. Interrater reliability of each measure was calculated using kappa coefficients. For each measure, the mean of physician and nurse scores was used to calculate every possible combination of CFS and PPS scores to determine the combination with maximum agreement. RESULTS: Interrater reliability of each measure was very high for the CFS (weighted κ=0.92) and PPS (weighted κ=0.80). The CFS-PPS score matching that achieved maximum agreement (weighted κ=0.71) was used to create a conversion chart between the two measures. CONCLUSION: This conversion chart is a reliable means of translating scores between the CFS and PPS and is useful for geriatric and palliative care teams collaborating in the care of elderly adults.

Nurses' experiences caring for patients and families dealing with malignant bowel obstruction.

Malignant bowel obstruction (MBO) is a well-recognised complication of advanced abdominal and pelvic cancers. Often surgical intervention is not feasible, resulting in complex symptoms and an unpredictable course. Although symptom management is a crucial part of nursing care, psychosocial and emotional issues frequently emerge for patients and families. This qualitative study explored the perspectives of nurses from a palliative care unit, in-patient acute care oncology units, ambulatory cancer setting, and the community on their experiences of caring for patients with MBO and their families. Six individual interviews and two focus groups were conducted. Eight overarching messages were identified related to nurses' experiences. Highlights include aspects of patients' and families' emotional distress, and the nurse-patient relationship in relieving suffering. Nurses have an important and privileged role that involves identifying MBO signs and symptoms, having knowledge of treatment and symptom management options, and helping patients transition from a curative to a palliative philosophy of care.

A qualitative descriptive study on the alignment of care goals between older persons with multi-morbidities, their family physicians and informal caregivers.

BACKGROUND: Goal setting is a recommended approach in clinical care that can help individuals with multi-morbidities and their caregivers manage chronic conditions. In this paper, the types of goals that were important for older persons with multi-morbidities were explored from the perspectives of patients, their caregivers and physicians. Comparisons of goals were made across each patient, caregiver and physician triad to determine alignment. METHODS: The study was a qualitative descriptive study facilitated through semi-structured one-on-one interviews. The study took place between May and October 2012 at a Family Health Team located in Ontario, Canada. The sample included 28 family medicine patients, their informal caregivers and family physicians. Socio-demographic data were analyzed via descriptive statistics in SPSS Version 17. Open ended questions pertaining to patient goals of care were analyzed thematically using NVivo9. Themes were derived on patient care goals for each of the participant groups (patients, caregivers and family physicians). Following this, alignment of goals across each of the triads was examined. Goal alignment was defined as concurrence on at least one goal by all three parties in a particular triad (i.e., patient, caregiver and family physician). RESULTS: Just over half of the patients were male (56%); they had an average age of 82.3 years and 4.61 health conditions. Most of the caregivers were female (82%); and 61% were a spouse of the care recipient. At the aggregate level, common goals expressed among patients, caregivers and family physicians were the maintenance of functional independence of patients and the management of their symptoms or functional challenges. Despite these common goals at the aggregate level, little alignment of goals was found when looking across patient-caregiver and physician triads. Lack of alignment tended to occur when patients had unstable or declining functional or cognitive health; when safety threats were noted; and when enhanced care services were required. CONCLUSIONS: The data suggest that goal divergence tends to occur when patients are less medically stable. While goal divergence may be expected due to the different roles and responsibilities of each of the players involved, these perspectives should be illuminated when building care plans. Further research is required to observe the extent to which goal setting occurs in family practice as well as how it can be embedded as a standard of practice.

An innovative self-care module for palliative care medical learners.

Palliative care is a uniquely demanding field in that clinicians routinely address the complex needs of patients living with incurable illness. Due to their relative inexperience, medical learners completing a palliative care educational experience are particularly vulnerable to the stresses that are often encountered. To address this educational need, a structured Self-Care Module was developed for medical learners rotating through a palliative care clinical rotation. Components of this module include completion of a process recording exercise, a structured reflection, and participation in a facilitated group discussion. An examination of the acceptability, utility, and operational feasibility of the module demonstrated that 86% (n=35) of learners found the module helpful in reflecting on their clinical encounters, 86% (n=35) gained an appreciation for the importance of self-reflection and self-awareness as a component of self-care and 97% (n=35) gained a greater appreciation for sharing clinical experiences with other learners. This novel Self-Care Module was found to be a well accepted, useful, and operationally feasible educational experience for postgraduate and undergraduate learners completing a palliative care educational experience.

What is symptom burden: a qualitative exploration of patient definitions.

Current definitions of "symptom burden" are largely derived from clinicians, and there are many variations in the way the term is used, defined, and operationalized. The aim of this study was to explore patient perceptions of symptom burden in the context of advanced and incurable disease. A group of 58 cancer patients followed by a palliative care team answered a single open-ended question: "Please define 'symptom burden'". Three authors independently coded and analyzed patient responses using a grounded theory approach. They identified six themes, the most frequently coded of which were: "can't do usual activities", "psychological suffering" and "specific severe symptoms". Our findings indicate that the concept of symptom burden is complex and extends beyond numerical symptom-scoring systems. In addition to inquiring about specific symptoms, it may be important to directly ask patients about their overall burden or experience of symptoms.

High scores on the Edmonton Symptom Assessment Scale identify patients with self-defined high symptom burden.

The terms symptom burden and symptom distress are frequently seen in palliative care literature yet are used in multiple ways ranging from addition of symptom scores to more in-depth assessments of interference in function. Patient input to date has had little role in these varied definitions yet previous reviews have suggested the importance of such input. This mixed qualitative and quantitative prospective study was conducted to seek patient input into the definition of 'symptom burden' and to correlate burden self-ranked scores with symptom scores on the Edmonton Symptom Assessment Scale (ESAS). Results suggest that patients with advanced disease followed by palliative care providers are a group with a high level of self-defined burden. Further, any patient rating one or more symptoms on the ESAS ≥7 is at high risk of self-defined burden and likely to be experiencing significant impact on physical, emotional and social functioning. Further work should look at which aspects of symptom management best promote a lessening of perceived burden.

What do symptom scores mean: observations on discrepancies when defining symptoms using words and numbers.

UNLABELLED: The Edmonton Symptom Assessment System (ESAS) has become a more frequently used tool for symptom screening in oncology and palliative care settings in Ontario. The process patients use to select symptom scores however is poorly understood. PURPOSE: The purpose of this paper is to consider what patients mean when assigning numbers or words to symptoms, and the implications for healthcare providers who interpret these responses. METHODS AND SAMPLE: A previously conducted study in our organization asked four hundred inpatient and ambulatory oncology patients to rank ESAS symptoms with the usual numerical responses (0-10) and then with word phrases of 'none', 'mild', 'moderate', or 'severe' to examine the relationship between chosen numbers and words. KEY RESULTS: Although results showed a strong positive correlation between number and word rankings for each ESAS symptom, closer examination revealed that for some patients there were discrepancies between chosen numbers and words, with broad numerical ranges, particularly for the words 'mild' and 'moderate'. Through a secondary analysis, these discrepant responses are explored and relevant literature is presented that highlights the importance of understanding patients as they communicate their symptoms. CONCLUSIONS: Health care providers need to be aware of the potential for discrepancies when reviewing patient self-reported data. Numbers and words may not fully capture a patient's symptom burden; further exploration is required to gain a more comprehensive understanding of a patient's current state of being.