Double-duty caregivers enduring COVID-19 pandemic to endemic: "It's just wearing me down".

The COVID-19 pandemic has considerably strained health care providers and family caregivers. Double-duty caregivers give unpaid care at home and are employed as care providers. This sequential mixed-method study, a survey followed by qualitative interviews, aimed to comprehensively understand the experiences of these Canadian double-duty caregivers amidst the pandemic and the transition to the endemic phase. The multi-section survey included standardized assessments such as the Double-duty Caregiver Scale and the State Anxiety Scale, along with demographic, employment-related, and care work questions. Data analysis employed descriptive and linear regression modeling statistics, and content analysis of the qualitative data. Out of the 415 respondents, the majority were female (92.5%) and married (77.3%), with 54.9% aged 35 to 54 years and 29.2% 55 to 64 years. 68.9% reported mental health decline over the past year, while 60.7% noted physical health deteriorated. 75.9% of participants self-rated their anxiety as moderate to high. The final regression model explained 36.8% of the variance in participants' anxiety levels. Factors contributing to lower anxiety included more personal supports, awareness of limits, younger age, and fewer weekly employment hours. Increased anxiety was linked to poorer self-rated health, and both perceptions and consequences of blurred boundaries. The eighteen interviewees highlighted the stress of managing additional work and home care during the pandemic. They highlighted the difficulty navigating systems and coordinating care. Double-duty caregivers form a significant portion of the healthcare workforce. Despite the spotlight on care and caregiving during the COVID-19 pandemic, the vital contributions and well-being of double-duty caregivers and family caregivers have remained unnoticed. Prioritizing their welfare is crucial for health systems as they make up the largest care workforce, particularly evident during the ongoing healthcare workforce shortage.

Exploring experiential learning within interprofessional practice education initiatives for pre-licensure healthcare students: a scoping review.

BACKGROUND: Interprofessional collaborative team-based approaches to care in health service delivery has been identified as important to health care reform around the world. Many academic institutions have integrated interprofessional education (IPE) into curricula for pre-licensure students in healthcare disciplines, but few provide formal initiatives for interprofessional practice (IPP). It is recognized that experiential learning (EL) can play a significant role supporting IPP education initiatives; however, little is known of how EL is used within education for IPP in healthcare settings. METHODS: We conducted a scoping review to map peer-reviewed literature describing IPP education initiatives involving EL for pre-licensure students in healthcare disciplines. A literature search was executed in MEDLINE, CINAHL, EMBASE, ERIC, PsycINFO, Scopus, and Social Services Abstracts. After deduplication, two independent reviewers screened titles and abstracts of 5664 records and then 252 full-text articles that yielded 100 articles for data extraction. Data was extracted using an Excel template, and results synthesized for presentation in narrative and tabular formats. RESULTS: The 100 included articles represented 12 countries and IPP education initiatives were described in three main typologies of literature - primary research, program descriptions, and program evaluations. Forty-three articles used a theory, framework, or model for design of their initiatives with only eight specific to EL. A variety of teaching and learning strategies were employed, such as small interprofessional groups of students, team huddles, direct provision of care, and reflective activities, but few initiatives utilized a full EL cycle. A range of perspectives and outcomes were evaluated such as student learning outcomes, including competencies associated with IPP, impacts and perceptions of the IPP initiatives, and others such as client satisfaction. CONCLUSION: Few educational frameworks specific to EL have been used to inform EL teaching and learning strategies to consolidate IPE learning and prepare students for IPP in healthcare settings. Further development and evaluation of existing EL frameworks and models would be beneficial in supporting robust IPP educational initiatives for students in healthcare disciplines. Intentional, thoughtful, and comprehensive use of EL informed by theory can contribute important advances in IPP educational approaches and the preparation of a future health care workforce.

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.

Understanding Student-Run Health Initiatives in the Context of Community-Based Services: A Concept Analysis and Proposed Definitions.

BACKGROUND: Student-run health initiatives in the community setting have been utilized to provide practical experience for undergraduate students to develop professional competencies, gain exposure to diverse populations, and to engage in activities of social accountability. There is much literature on student-run health initiatives; however, there is no consensus on a definition of this concept or a comprehensive synthesis of the literature that describes student-run health initiatives offered by students in pre-licensure healthcare education programs. PURPOSE: To provide a concept analysis of, and propose a definition for, student-run health initiatives that provide community-based services for students during pre-licensure health discipline education. METHODS: A systematic literature search and review process was used to identify and synthesize peer-reviewed articles from 7 academic databases covering a range of pre-licensure health disciplines and education. Walker and Avant's framework for concept analysis was used to guide exploration of attributes, antecedents and consequences of student-run initiatives, and to inform development of a definition for this concept. RESULTS: The review yielded 222 articles for data extraction and represented 17 distinct pre-licensure health disciplines, 18 health-related disciplines, and a range of other baccalaureate and graduate programs. Our analysis revealed 16 definitions, 5 attributes, 6 antecedents, and consequences identified for student-run health initiatives. Attributes were Provision of Service, Service is Free, Target Clientele, Volunteerism, and Student Governance. Antecedents included Purpose/Rationale, Affiliation with Academic Unit, Location and Partnerships, Funding and Resources, Professional Oversight, and Preparation for Student Role. Consequences were improved access to services and outcomes for clients; competency development, personal gains and interprofessional learning for students; and positive outcomes for broader systems, such as decrease of service utilization and cost/benefit. CONCLUSIONS: There was no clear conceptual definition for student-run health initiatives, but many defining characteristics and well-described exemplars in the literature. Given the variations in purpose and scope of these initiatives, particularly to distinguish degree of students' roles in operations and the involvement of academic institutions, we propose 3 distinct conceptual definitions: student-run, student-led, and student-infused health initiatives.

Imperfect Solutions to the Neoliberal Problem of Public Aging: A Critical Discourse Analysis of Public Narratives of Long-Term Residential Care.

Public representations of long-term residential care (LTRC) facilities have received limited focus in Canada, although literature from other countries indicates that public perceptions of LTRC tend to be negative, particularly in contexts that prioritize aging and dying in place. Using Manitoba as the study context, we investigate a question of broad relevance to the Canadian perspective; specifically, what are current public perceptions of the role and function of long-term care in the context of a changing health care system? Through critical discourse analysis, we identify four overarching discourses dominating public perceptions of LTRC: the problem of public aging, LTRC as an imperfect solution to the problem, LTRC as ambiguous social spaces, and LTRC as a last resort option. Building on prior theoretical work, we suggest that public perceptions of LTRC are informed by neoliberal discourses that privilege individual responsibility and problematize public care.

Development and Implementation of a Survey to Assess Health-Care Provider's Competency, Attitudes, and Knowledge About Perinatal Palliative Care.

Perinatal palliative care is an emerging area of health care. To date, no published tools assess health-care provider's knowledge and level of comfort in providing such care. A 2-phase study was undertaken to develop and implement a survey to evaluate the self-assessed competency, attitudes, and knowledge of health-care providers working in perinatal palliative care. Phase 1 included a review of the literature and appraisal of palliative and death-related instruments to inform the initial draft of the Perinatal Palliative Care Survey (PPCS). Twenty-four Canadian pediatric palliative care specialists critiqued the PPCS, establishing its face and content validity. Phase 2 involved administering the PPCS at 4 sites across Canada, resulting in 167 responses from nurses, physicians, and midwives. The majority of participants responded that they possessed a degree of comfort in providing perinatal palliative care, particularly with assessing pain (76%), managing pain (69%), assessing other symptoms (85%), and managing other symptoms (78%). Two areas where participants level of confidence or extreme confidence was diminished included having conversations with families about the possibility of their infant dying (55%) and knowing and accessing community palliative care resources (32%). Responses in the knowledge section identified gaps related to opioid use, pharmacological interventions for breathlessness, pain behaviors, and tolerance developed to opioids and sedatives. Eighty-six percent of respondents stated that if education about palliative care was made available, they would participate with priority topics identified as communication with families (75%), managing symptoms (69%), pain management (69%), and ethical issues (66%). The PPCS provides a useful assessment to determine the educational needs of health-care providers delivering perinatal palliative care.

The psychosocial needs of students conducting research with patients and their families in advanced cancer and palliative care: A scoping review.

OBJECTIVE: The objective of this article was to explore the extent of the scientific literature and evidence base about the psychosocial needs of students conducting research in the fields of advanced cancer and palliative care. METHOD: A scoping review was conducted in major scientific databases. English-language articles on the topic of interest were retained if they were published in peer-reviewed journals between 1995 and 2013. RESULTS: A total of 3,161 references were screened, and 7 were retained for analysis. Only two articles were empirical studies involving the collection of primary empirical data. The remaining ones were commentaries and personal reflections. While there is a near absence of empirical research about the psychosocial needs of students, several commentaries suggest that students in this field have a high need for support. Three themes were identified in the limited literature retrieved: (1) the importance of proper training and supervision; (2) the availability of emotional support structures; and (3) the use of effective and deliberate self-care strategies. SIGNIFICANCE OF RESULTS: This scoping review demonstrates that little is known about the psychosocial needs of students conducting research in advanced cancer and palliative care. However, what is clear is that there is a large emotional impact on student researchers engaged in this type of work. Adequate training and support is needed to promote students' health and well-being, encourage retention of students, and foster high-quality studies. More empirical data are needed to better understand the experiences of students conducting this type of research and to ensure the sustainability of training and research in this field.

Conceptualizing Telehealth in Nursing Practice: Advancing a Conceptual Model to Fill a Virtual Gap.

Increasingly nurses use various telehealth technologies to deliver health care services; however, there has been a lag in research and generation of empirical knowledge to support nursing practice in this expanding field. One challenge to generating knowledge is a gap in development of a comprehensive conceptual model or theoretical framework to illustrate relationships of concepts and phenomena inherent to adoption of a broad range of telehealth technologies to holistic nursing practice. A review of the literature revealed eight published conceptual models, theoretical frameworks, or similar entities applicable to nursing practice. Many of these models focus exclusively on use of telephones and four were generated from qualitative studies, but none comprehensively reflect complexities of bridging nursing process and elements of nursing practice into use of telehealth. The purpose of this article is to present a review of existing conceptual models and frameworks, discuss predominant themes and features of these models, and present a comprehensive conceptual model for telehealth nursing practice synthesized from this literature for consideration and further development. This conceptual model illustrates characteristics of, and relationships between, dimensions of telehealth practice to guide research and knowledge development in provision of holistic person-centered care delivery to individuals by nurses through telehealth technologies.

OA8†Caring for the family caregiver: working with volunteers to implement and improve a service to enable family caregivers to maintain their own wellbeing.

BACKGROUND: Family caregivers suffer physically, mentally, and spiritually. Community volunteers play an important role in supporting patients at the end of life or former caregivers in bereavement. However, there are no research reports of volunteer services focused on maintaining the wellbeing of end-of-life caregivers. AIM: To have volunteers, a hired volunteer coordinator, health care providers, and researchers implement and formatively evaluate a volunteer service to enable family caregivers to maintain their well being while providing care and subsequent bereavement. This presentation will focus on the volunteers' roles with the project as both agents of change to the service and as support for the caregivers. METHOD: A qualitative formative evaluation informed by Guba and Lincoln's Fourth Generation Evaluation (1989) participatory design was conducted. Data was collected through individual interviews, focus groups, participant observation during volunteer support meetings, and through volunteers' written reflections. RESULTS: Amongst the volunteers, volunteer coordinator, and principal investigator, there was mutual respect for and interest in learning about everyone's roles and experiences in the project. The experience was rewarding because they felt they helped the family caregiver and enjoyed developing and improving the service and working in a supportive team. Volunteers' challenges included being nervous for their first meeting with a caregiver, and frustration with some rules put in place to protect them (e.g. not helping the caregiver with direct care for the patient). CONCLUSION: Volunteers can be an effective part of the research team, while providing valuable support and encouragement for family caregivers to maintain their own wellbeing.

Knowing, caring, and telehealth technology: "going the distance" in nursing practice.

The use of technology in delivery of health care services is rapidly increasing, and more nurses are using telehealth to provide care by distance to persons with complex health challenges. The rapid uptake of telehealth modalities and dynamic evolution of technologies has outpaced the generation of empirical knowledge to support nursing practice in this emerging field, specifically in relation to how nurses come to know the person and engage in holistic care in a virtual environment. Knowing the person and nursing care have historically been associated with physical presence and close proximity in the nurse-client relationship, and the use of telehealth can limit the ways in which a nurse can observe the person, potentiate perceptions of distance, and lead to a reductionist perspective in care. The purpose of this article is to illuminate the dynamic and evolving nature of nursing practice in relation to the use of telehealth and to highlight gaps in nursing knowledge specific to knowing the person in a virtual environment. Such an understanding is necessary to inform future research and generate empirical evidence to support nurses in providing ethical, safe, effective, and holistic care by distance to persons through telehealth technology.

Family members' experiences caring for patients with advanced head and neck cancer receiving tube feeding: a descriptive phenomenological study.

CONTEXT: Head and neck cancer patients with dysphagia frequently require tube feeding. Family members are often involved in caring for such patients but feel ill prepared to do so. Health professionals are in a key position to support family members who undertake caregiving responsibilities. The ability to provide support requires that the experiences of family caregivers (FCs) are well understood; however, few studies examining these experiences have been conducted. To address this gap, research is needed that examines and describes the caregiving experience from the perspective of family members themselves. Such work will provide an empirical base to guide health professionals' practice with FCs. OBJECTIVES: To explicate the lived experience of caring for a dysphagic relative with advanced head and neck cancer receiving tube feeding. METHODS: A descriptive phenomenological approach was used. Six FCs participated in two in-depth interviews each. Spiegelberg's three-step approach guided data analysis. RESULTS: The essence of FCs' experience was "negotiating a new normal" and includes the themes of 1) negotiating changing roles, 2) negotiating an altered lifestyle, 3) negotiating ways of coping, and 4) negotiating the meaning of the feeding tube. Themes 1 and 2 are reported on here. CONCLUSION: FCs experience significant challenges. Study findings provide direction for health professionals who work with FCs and underscore the need for future research geared toward developing and testing psychoeducational interventions aimed at supporting FCs in the important and difficult caregiving work they do.

Psychosocial care of patients with head and neck cancer.

OBJECTIVES: To identify the psychosocial challenges experienced by individuals with head and neck cancer and their family caregivers and discuss future research opportunities in the areas of psychosocial nursing care for this patient population. DATA SOURCES: Published research articles, abstracts, book chapters, literature reviews. CONCLUSION: Patients with head and neck cancer experience profound functional and visible changes as a result of the disease and treatment. Such changes have a significant psychosocial impact on these patients and their families. A rehabilitative approach within a palliative framework of care is necessary to adequately meet the complex needs of these patients and their families. IMPLICATIONS FOR NURSING PRACTICE: Nurses are in a key position to provide support to patients with head and neck cancer and their families. Nurses need to recognize the significant psychosocial challenges that individuals with head and neck cancer face, and should be encouraged to integrate psychosocial screening, assessment, and intervention into the overall plan of care.

Management of dysphagia in advanced oropharyngeal cancer.

Individuals with advanced oropharyngeal cancer often experience dysphagia as a result of their illness and its treatment. Research consistently demonstrates that dysphagia and difficulty with oral intake have many implications, including a negative impact on quality of life. Nurses are in a key position to provide support and initiate appropriate interventions for individuals with dysphagia. Using the Human Response to Illness model (Mitchell et al, 1991) as an organising framework, this paper presents a critical review of the empirical literature regarding dysphagia in individuals with advanced oropharyngeal cancer that will: i) provide the reader with a comprehensive understanding of dysphagia; ii) identify current gaps in our knowledge; and iii) establish the foundation for appropriate evidence-based interventions to optimise functioning and quality of life in this patient population.