ABSTRACT
The provision of hallway healthcare is a growing concern within contemporary healthcare systems. Hallway healthcare or hallway medicine is defined as the use of unconventional spaces, such as hallways, to provide patient care in the acute care setting. Negative effects associated with the prevalence of hallway healthcare may hinder the healing trajectory of vulnerable and ageing populations. Nurses have an intimate role in the provision of care and can offer valuable insight for the advocacy of high quality and safe patient care. Moreover, hallway healthcare is associated with the development of suboptimal working conditions that have resulted in negative impacts on the nursing profession. The authors seek to better understand the occurrence of this phenomenon by exploring the development of healthcare policies in relation to the neoliberal tenets of, individualism, free market via deregulation and privatization, and decentralization. This article provides an analysis of the historical evolution of hallway healthcare and neoliberalism. Furthermore, the authors aim to explore and demonstrate how the COVID-19 pandemic has shed light on the inefficiency of neoliberalism ideologies for healthcare. Based on the analysis, the authors shall provide suggestions for nurses and stakeholders to enact meaningful change in an international context.
Subject(s)
COVID-19 , Pandemics , COVID-19/prevention & control , Delivery of Health Care , Health Policy , Humans , Pandemics/prevention & controlABSTRACT
BACKGROUND: The COVID-19 pandemic has forced rapid and widespread change to standards of patient care and nursing practice, inevitably leading to unprecedented shifts in the moral conditions of nursing work. Less is known about how these challenges have affected nurses' capacity to meet their ethical responsibilities and what has helped to sustain their efforts to continue to care. RESEARCH OBJECTIVES: 1) To explore nurses' experiences of striving to fulfill their ethical responsibilities of care during the COVID-19 pandemic and 2) to explore what has fostered nurses' capacity to fulfill these responsibilities. RESEARCH DESIGN: A generic qualitative approach was used incorporating concepts coming from fundamental features of care. PARTICIPANTS: Twenty-four Canadian Registered Nurses from a variety of practice settings were interviewed. ETHICAL CONSIDERATIONS: After receiving ethics approval, signed informed consent was obtained before participants were interviewed. FINDINGS: Four themes were identified. 1) Challenges providing good care in response to sudden changes in practice. 2) Tensions in juggling the responsibility to prevent COVID-19 infections with other competing moral responsibilities. 3) Supports to foster nurses' capacity to meet their caring responsibilities. 4) The preservation of nurses' moral identity through expressions of gratitude and health improvement. DISCUSSION: Infection control measures and priorities set in response to the pandemic made at distant population and organizational levels impacted nurses who continued to try to meet the ideals of care in close proximity to patients and their families. Despite the challenges that nurses encountered, the care they received themselves enabled them to continue to care for others. Nurses benefited most from the moral communities they had with their colleagues and occasionally nurse leaders, especially when they were supported in a face-to-face manner.Conclusion: Moral community can only be sustained if nurses are afforded the working conditions that make it possible for them to support each other.
Subject(s)
COVID-19 , Nurses , Canada , Humans , Morals , Pandemics , Qualitative ResearchABSTRACT
Poor access to care is a top patient-oriented research priority for youth with chronic pain in Canada, and the COVID-19 pandemic has exacerbated these concerns. Our patient-oriented project team engaged with marginalized and racialized youth with chronic pain (Black youth with sickle cell disease, Indigenous youth and youth with complex medical needs) and their families to ensure that best practice recommendations for virtual care are inclusive and equitable. Input provided through virtual round-table discussions improved recommendations for leveraging, implementing and selecting best platforms for virtual care for youth with chronic pain and identified new gaps for future research, practice and policy change.
Subject(s)
COVID-19 , Chronic Pain , Adolescent , COVID-19/epidemiology , Canada , Chronic Pain/therapy , Humans , PandemicsABSTRACT
BACKGROUND: Hospital-to-home transitions in palliative care are fraught with challenges. To assess transitions researchers have used patient reported outcome measures and qualitative data to give unique insights into a phenomenon. Few measures examine care setting transitions in palliative care, yet domains identified in other populations are likely relevant for patients receiving palliative care. AIM: Gain insight into how patients experience three domains, discharge readiness, transition quality, and discharge-coping, during hospital-to-home transitions. DESIGN: Longitudinal, convergent parallel mixed methods study design with two data collection visits: in-hospital before and 3-4 weeks after discharge. Participants completed scales assessing discharge readiness, transition quality, and post discharge-coping. A qualitative interview was conducted at both visits. Data were analyzed separately and integrated using a merged transformative methodology, allowing us to compare and contrast the data. SETTING AND PARTICIPANTS: Study was set in two tertiary hospitals in Toronto, Canada. Adult inpatients (n = 25) and their caregivers (n = 14) were eligible if they received a palliative care consultation and transitioned to home-based palliative care. RESULTS: Results were organized aligning with the scales; finding low discharge readiness (5.8; IQR: 1.9), moderate transition quality (66.7; IQR: 33.33), and poor discharge-coping (5.0; IQR: 2.6), respectively. Positive transitions involved feeling well supported, managing medications, feeling well, and having healthcare needs met. Challenges in transitions were feeling unwell, confusion over medications, unclear healthcare responsibilities, and emotional distress. CONCLUSIONS: We identified aspects of these three domains that may be targeted to improve transitions through intervention development. Identified discrepancies between the data types should be considered for future research exploration.
Subject(s)
Hospice and Palliative Care Nursing , Palliative Care , Adult , Aftercare , Hospitals , Humans , Patient DischargeABSTRACT
BACKGROUND: Transitioning from the hospital to community is a vulnerable point in patients' care trajectory, yet little is known about this experience within the context of palliative care. While some studies have examined the patient and caregiver experience, no study to date has synthesized the literature on the healthcare provider's perspective on their role and experience facilitating these transitions. AIM: The purpose of this systematic review was to understand the experience and perspective of healthcare providers who support the transition of patients receiving palliative care as they move from acute care to community settings. DESIGN: A qualitative systematic review of studies using thematic analysis as outlined by Thomas and Harden. PROSPERO: ID # CRD42018109662. DATA SOURCES: We searched four databases: MEDLINE, Embase, ProQuest and CINAHL for studies published in English from 1995 until May 22, 2020. Four reviewers screened records using the following selection criteria: (1) peer-reviewed empirical study, (2) adult sample, (3) qualitative study design, (4) perspective of healthcare providers, and (5) included a component of transitions between acute to community-based palliative care. Study findings were analyzed using thematic analysis which entailed: (1) grouping the findings into recurring themes; (2) iteratively referring back to the articles to obtain nuances of the theme and quotations; and (3) defining and solidifying the themes. RESULTS: Overall 1,791 studies were identified and 15 met inclusion criteria. Studies were published recently (>2015, n = 12, 80%) and used a range of qualitative methods including semi-structured interviews, focus groups, and field interviews. Three core themes related to the role and experience of healthcare providers were identified: (1) assessing and preparing for transition; (2) organizing and facilitating the logistics of transition; and (3) coordinating and collaborating transitional care across sectors. The majority of studies focused on the discharge process from acute care; there was a lack of studies exploring the experiences of healthcare providers in the community who receive patients from acute care and provide them with palliative care at home. CONCLUSION: This review identified studies from a range of relatively high-income countries that included a diverse sample of healthcare providers. The results indicate that healthcare providers experience multiple complex roles during the transition facilitation process, and future research should examine how to better assist clinicians in supporting these transitions within the context of palliative care provision.
Subject(s)
Hospice and Palliative Care Nursing , Palliative Care , Adult , Health Personnel , Humans , Patient Transfer , Qualitative ResearchABSTRACT
Advance care planning is a process that encourages people to identify their values, to reflect upon the meanings and consequences of serious illness, to define goals and preferences for future medical treatment and care, and to discuss these goals with family and health-care providers. Advance care planning is especially important for those who are chronically ill, as patients and their families face a variety of complex healthcare decisions. Participating in advance care planning has been associated with improved outcomes; yet, despite over 25 years of public awareness campaigns, research, and interventions developed to increase participation, advance care planning completion rates for people with chronic illnesses are no different than those in the general public (approximately 25%). Advance care planning has traditionally used an individualistic approach to autonomy, which puts forward an understanding of agents as independent, rational and self-interested persons. Because this individualistic approach has been largely unsuccessful in improving advance care planning uptake, a re-examination of the philosophical underpinnings of this practice and an exploration of alternative frameworks is warranted. In offering this exploration, we briefly outline two current perspectives on autonomy: the individualistic view and the relational view as articulated by feminist philosophers. Using a critical examination of the theoretical and empirical work on this topic, we argue that the individualistic view of autonomy does not sufficiently capture the relational and social complexities of the decision-making process of advance care planning. To offer a counterpoint, we examine the relational view of autonomy and suggest that this perspective is better aligned with the process of advance care planning. Specifically, we demonstrate that a relational model of autonomy is well suited to exploring advance care planning for four main reasons: (1) it recognizes the importance of relationships, (2) it reflects the fluctuating nature of autonomy in chronic illness, (3) it recognizes vulnerability, and (4) it is consonant with empirical work examining the advance care planning process.
Subject(s)
Advance Care Planning/trends , Chronic Disease/psychology , Patients/psychology , Relational Autonomy , HumansABSTRACT
AIM AND BACKGROUND: Health care needs of individuals living in the community are increasing. To meet the rising need, unregulated care providers are providing more complex patient care. The aim of this review is to articulate the unregulated care provider role by identifying patient care activities offered by unregulated care providers in home care. METHODS: A scoping review was conducted. One thousand and eleven published manuscripts were identified in CINAHL, Ageline and MEDLINE. Eleven additional manuscripts were identified through hand searching. Manuscripts were screened for relevancy and data were abstracted to address the research question. RESULTS: Twenty-eight studies originating from Canada, Sweden, Belgium, UK, USA and New Zealand were included. Three categories of patient care activities provided by unregulated care providers were found: (1) personal care and core skills; (2) delegated tasks and added skills; and (3) specialty roles. CONCLUSION: Unregulated care providers predominantly provide assistance with personal care and activities of daily living. However, unregulated care providers also provide care outside their training, including care once provided by nurses. IMPLICATIONS FOR NURSING MANAGEMENT: Guidelines clearly articulating responsibilities of nurses transferring care activities to unregulated care providers should be developed. Processes and policies regarding evaluation and supervision of unregulated care providers providing added skills should be developed to ensure appropriate monitoring and support.
Subject(s)
Community Health Workers/trends , Health Personnel/trends , Nurse's Role , Community Health Workers/standards , Health Personnel/standards , Home Care Services , HumansABSTRACT
To accommodate the increasing demand for home care in Ontario, Canada, some care tasks traditionally performed by regulated health professionals are being transferred to personal support workers (PSW). However, this expansion of PSW roles is not uniform across the province. Between December 2014 and April 2015, barriers and facilitators to expansion of PSW roles in home care were explored in a series of 13 focus groups. Home care staff identified seven categories of factors affecting the expansion of PSW roles in home care including: communication and documentation; organization and structures of care; attitudes and perceptions of the expanding PSW role; adequate staffing; education, training and support; PSW role clarity and variation in practices, policies, and procedures. Addressing barriers and promoting facilitators at the funder and employer levels will enable the provision of safe, effective, and equitable care by PSWs.
Subject(s)
Home Care Services , Nurse's Role , Nursing Assistants/supply & distribution , Focus Groups , Home Care Services/organization & administration , Home Care Services/supply & distribution , Humans , Ontario , Qualitative Research , WorkforceABSTRACT
This paper explores the policies and practices that are needed to improve the safety of home care in light of the most recent evidence about home care safety in Canada. Four areas for policy and practice change are addressed: 1) the promotion of effective communication processes in home care through cross-sector collaboration, case management and technology innovations; 2) screening for safety risk factors; 3) standardizing care processes, packaging and equipment; and 4) supporting family/caregivers and strengthening clients' ability to engage in therapeutic self-care. Evidence-based strategies for change are presented within the context of the evidence about home care safety issues.
Subject(s)
Home Care Services , Patient Safety , Canada , Caregivers/organization & administration , Caregivers/standards , Case Management , Communication , Health Policy , Home Care Services/organization & administration , Home Care Services/standards , Humans , Patient Safety/standards , Quality Improvement , Social Work/methodsABSTRACT
The COVID-19 pandemic has had a deleterious impact on the lives of nurses who work in long-term care; however, the moral conditions of their work have been largely unexamined. The purpose of this qualitative study, therefore, was to explore registered practical nurses' (RPNs) experiences of the moral habitability of long-term care environments in Ontario, Canada during the COVID-19 pandemic. Four themes were identified: (1) Striving to meet responsibilities in a failed system; (2) bearing the moral and emotional weight of residents' isolation and dying in a context of strict public health measures; (3) knowing the realities of the work, yet failing to be heard, recognized, or supported by management; and (4) struggling to find a means of preservation for themselves and the profession. Attention to the moral habitability of RPNs' work environments is necessary to achieve a high-quality, ethically attuned, and sustainable nursing workforce in long-term care.
Subject(s)
COVID-19 , Nurses , Humans , Long-Term Care , Pandemics , Ontario , MoralsABSTRACT
Introduction: Pediatric chronic pain is a significant problem in Canada, affecting one in five youth. This study describes the impact of the pandemic on the experiences of Canadian families living with chronic pain through interviews with youth living with chronic pain, parents, and siblings. Methods: Employing a qualitative descriptive design, in-depth semistructured interviews were completed with Canadian youth living with pain, as well as parents and siblings. Participants were not required to be related. Interviews were analyzed using a reflexive thematic analysis approach. Results: Forty-four interviews were completed with 14 parents, 19 youth with chronic pain, and 11 siblings from across the country. Three key themes were developed: (1) absorbing and shifting: the toll of the pandemic on the family system (e.g., loss of coping mechanisms, shifting roles to respond to the pandemic), (2) social ambiguity and abandonment (e.g., social sacrifice and abandonment by the health care system), and (3) building community resilience: familial adaptation to the pandemic (e.g., family cohesion, confidence, and self-management). Discussion/Conclusions: Youth, parents, and siblings reported that the pandemic impacted coping strategies across the family system. These results outline the challenges youth experienced managing their pain and overall health throughout the pandemic and the resilience built within families during this time. Going forward, it would be relevant to examine how racialized and structurally marginalized youth with chronic pain and their families experienced the pandemic. Future research should examine how unexpected benefits of the pandemic (e.g., increased confidence and self-management) may be sustained into the future.
Introduction: La douleur chronique pédiatrique est un problème important au Canada, qui touche un jeune sur cinq. Cette étude décrit les répercussions de la pandémie sur les expériences des familles canadiennes vivant avec la douleur chronique par des entrevues avec des jeunes vivant avec une douleur chronique, des parents et des frères et sÅurs.Méthodes: À l'aide d'un devis descriptif qualitatif, des entretiens semi-structurés approfondis ont été réalisés auprès de jeunes Canadiens vivant avec la douleur, leurs parents, et leurs frères et sÅurs. Il n'était pas nécessaire que les participants aient un lien familial. Les entretiens ont été analysés à l'aide d'une approche d'analyse thématique réflexive.Résultats: Quarante-quatre entretiens ont été réalisés auprès de 14 parents, 19 jeunes souffrant de douleur chronique et 11 frères et sÅurs de tout le pays. Trois thèmes clés ont été abordés : (1) l'absorption et le changement : le coût de la pandémie pour le système familial (p. ex., perte de mécanismes d'adaptation, changement de rôles pour réagir à la pandémie), (2) l'ambiguïté sociale et l'abandon (p. ex., le sacrifice social et l'abandon par le système de soins de santé), et (3) le renforcement de la résilience communautaire : adaptation familiale à la pandémie (p. ex., cohésion familiale, confiance et auto-prise en charge).Discussion/Conclusions: Les jeunes, les parents et les frères et sÅurs ont signalé que la pandémie avait eu des répercussions sur les stratégies d'adaptation dans l'ensemble du système familial. Ces résultats décrivent les défis rencontrés par les jeunes pour prendre en charge leur douleur et leur santé globale tout au long de la pandémie, ainsi que la résilience démontrée par les familles pendant cette période. À l'avenir, il serait pertinent d'examiner comment les personnes racialisées et les jeunes structurellement marginalisés souffrant de douleur chronique et leurs familles ont vécu la pandémie.Les recherches futures devraient examiner comment les avantages inattendus de la pandémie (par exemple, une confiance accrue et l'auto-prise en charge) peuvent être maintenus à l'avenir.
ABSTRACT
BACKGROUND: Paediatric chronic pain was a public health emergency before the novel coronavirus (COVID-19) pandemic, and this problem is predicted to escalate. Pain tends to occur intergenerationally in families, and youth with chronic pain and their parents have high rates of mental health issues, which can further exacerbate pain. Siblings of youth with chronic pain have been largely overlooked in research, as well as the impact of the pandemic on posttraumatic stress disorder (PTSD) symptoms and healthcare utilization. METHODS: This cross-sectional study examined pain, mental health and healthcare utilization in three groups: youth with chronic pain (n = 357), parents of youth with chronic pain (n = 233) and siblings of youth with chronic pain (n = 156) during the COVID-19 pandemic in Canada. RESULTS: More so than with pain symptoms, the results revealed high levels of mental health symptoms (i.e. anxiety, depressive, and PTSD), particularly in individuals more personally impacted by the pandemic. The largest effect was seen on PTSD symptoms for all groups. For parents with chronic pain, greater personal COVID-19 impact was related to worse pain interference. Reported rates of healthcare utilization were strikingly high, with youth with chronic pain, parents (reporting on behalf of their children with chronic pain), and siblings of youth with chronic pain reporting that most consultations were due to pain. CONCLUSIONS: Longitudinal research assessing these outcomes across continued waves of the pandemic is needed to ensure timely, tailored and equitable access to pain and mental health assessment and treatment. SIGNIFICANCE: This study examined pain, mental health, substance use and healthcare utilization in youth with chronic pain, siblings and parents during the COVID-19 pandemic. Greater personal impact of the pandemic was not largely associated with poorer pain outcomes; however, it was associated with mental health, with the largest effect on PTSD symptoms. The high rates and significant association of COVID-19 impact with PTSD symptoms underscore the importance of including PTSD assessment as part of routine screening practices in pain clinics.
ABSTRACT
Approximately 500,000 Canadians live with heart failure (Ross et al., 2006). These numbers continue to rise due to advancing technology and successes in treating cardiac conditions and potentially fatal events such as myocardial infarctions. According to Carrier (2005), individuals with damaged hearts are living longer, and lives are being successfully saved with the surge of cardiovascular assist devices developed in recent years, which are increasingly used as a bridge to transplant. Despite the lifesaving capabilities of ventricular-assist devices, these innovations pose risks and complications that can be debilitating for patients and their families (Carrier, 2005). As this complex trajectory is navigated, nurses provide care and support to the patient and family while playing a unique role in the assessment and monitoring of these devices. A family-centred nursing model provides a framework for practice when nursing patients and families are in crisis. The foundations of the McGill Model of Nursing are focused on a strengths-based approach, revolving around collaboration between patients, family resources, and tailored interventions (Gottlieb & Feeley, 2005). As students placed in a critical care setting, we began to realize the complexity of care required to nurse these patients and their families. In this paper, a case study is used to describe and share our learning experiences of caring for a patient with a biventricular assist device, as well as the principles that guided our interventions.
Subject(s)
Cerebral Infarction/etiology , Heart Failure/nursing , Heart-Assist Devices/adverse effects , Nurse-Patient Relations , Palliative Care , Canada , Education, Nursing , Heart Failure/surgery , Heart Failure/therapy , Heart Transplantation , Humans , Intensive Care UnitsABSTRACT
PURPOSE: Project Extension for Community Healthcare Outcomes (ECHO) is a hub-and-spoke tele-education model that aims to increase health care providers' access to evidence-based guidelines and enhance their capacity to care for complex patients in rural, remote, and underserved communities. The purpose of this scoping review was to examine evidence of the impact of Project ECHO programs on patient and community health outcomes. METHOD: The authors used Arksey and O'Malley's framework and subsequent revisions proposed by Levac and colleagues to guide their review. They searched MEDLINE, EMBASE, CINAHL Plus, and Web of Science for English-language, peer-reviewed articles published between January 2003 and June 2020. Included studies focused on Project ECHO programs and reported either patient or community health outcomes. The authors used a standardized data extraction form to document bibliographical information and study characteristics, including health outcome level(s), as articulated by Moore's evaluation framework for continuing medical education. RESULTS: Of the 597 search results, the authors identified 15 studies describing Project ECHO programs. These programs were implemented in the United States and Australia and facilitated education sessions with health care providers caring for adult patients living with 1 of 7 medical conditions. Included study findings suggest Project ECHO programs significantly changed patient-level outcomes (n = 15) and to a lesser extent changed community-level outcomes (n = 1). Changes in care were observed at the individual patient level, at the practice level, and in objective clinical measures, including sustained virologic response and HbA1c. CONCLUSIONS: This review identified emerging evidence of the effectiveness of Project ECHO as a tele-education model that improves patient health outcomes and has the potential to positively impact community health. The small number of included studies suggests that additional evidence of patient- and community-level impact is required to support the continued adoption and implementation of this model.
Subject(s)
Health Personnel , Public Health , Adult , Education, Medical, Continuing , Health Personnel/education , Health Services Accessibility , Humans , Public Health/education , Rural Population , United StatesABSTRACT
Globally, nurses have experienced changes to the moral conditions of their work during coronavirus outbreaks. To identify the challenges and sources of support in nurses' efforts to meet their ethical responsibilities during SARS, MERS, and COVID-19 outbreaks a scoping review design was chosen. A search was conducted for eligible studies in Ovid MEDLINE, Ovid Embase and Embase Classic, EBSCO CINAHL Plus, OVID APA PsycInfo, ProQuest ASSIA, and ProQuest Sociological Abstracts on August 19, 2020 and November 9, 2020. The PRISMA-ScR checklist was used to ensure rigor. A total of 5204 records were identified of which 41 studies were included. Three themes were identified related challenges in meeting ethical responsibilities: 1) substandard care, 2) impeded relationships, 3) organizational and system responses and six themes relating to sources of support: 1) team and supervisor relationships, 2) organizational change leading to improved patient care, 3) speaking out, 4) finding meaning, 5) responses by patients and the public, 6) self-care strategies.Our review revealed how substandard care and public health measures resulted in nurses not being fully able to meet their ethical responsibilities of care. These included the visitation policies that impeded the support of patients by nurses and families, particularly with respect to face-to-face relationships. Organizational and system responses to the evolving outbreaks, such as inadequate staffing, also contributed to these challenges. Supportive relationships with colleagues and supervisors, however, were very beneficial, along with positive responses from patients and the public.
Subject(s)
COVID-19 , Nurses , COVID-19/epidemiology , Disease Outbreaks , Humans , MoralsABSTRACT
During the coronavirus 2019 (COVID-19) pandemic youth with chronic pain have experienced additional barriers to accessing treatment and managing their pain. This study explored the experiences of youth with chronic pain and their parents during the COVID-19 pandemic. Individual semi-structured interviews were conducted with 20 youth with chronic pain (aged 13-20 years) and one of their parents, recruited from a tertiary level pediatric chronic pain program. Interviews occurred between the months of June to August 2020 and enabled participants to describe their experiences of the COVID-19 pandemic according to their own unique perspectives. Transcripts were analyzed using inductive reflexive thematic analysis. Four themes were generated and labelled: "temporality, mental health, and pain," "coping with pain during a global pandemic," "impact on care," and "re-appraisal in the context of development and pandemic life." Across these themes, youth and parents described their unique challenges of living with pain as they adapted to changing circumstances of the COVID-19 pandemic. Notably, youth experienced increased difficulties managing their mental health and pain, which were intricately connected and related to social isolation, temporality, and uncertainty exacerbated by the COVID-19 pandemic. Restrictions due to the COVID-19 pandemic impacted youth's access to care and their abilities to engage in coping strategies to manage their pain. The COVID-19 pandemic was also perceived to have interrupted youth's development and growing autonomy, prompting youth to re-appraise their current circumstances and imagined futures. PERSPECTIVE: This manuscript provides an in-depth understanding of the impact of the COVID-19 pandemic on youth with chronic pain and their parents. Youth and their parents perceived the COVID-19 pandemic to have impacted youth's mental health, pain, socio-emotional development, and access to care.
Subject(s)
COVID-19 , Chronic Pain , Adolescent , Child , Chronic Pain/epidemiology , Humans , Mental Health , Pandemics , Parents/psychologyABSTRACT
Background The HeartFull Collaborative is a regionally organized model of care which involves specialist palliative care and cardiology health care providers (HCPs) in a collaborative, home-based palliative care approach for patients with advanced heart failure (AHF). We evaluated HCP perspectives of barriers and facilitators to providing coordinated palliative care for patients with AHF at home. Methods and Results We conducted a qualitative study with 17 HCPs (11 palliative care and 6 cardiology) who were involved in the HeartFull Collaborative from April 2013 to March 2020. Individual, semi-structured interviews were held with each practitioner from November 2019 to March 2020. We used an interpretivist and inductive thematic analysis approach. We identified facilitators at 2 levels: (1) individual HCP level (on-going professional education to expand competency) and (2) interpersonal level (shared care between specialties, effective communication within the care team). Ongoing barriers were identified at 2 levels: (1) individual HCP level (e.g. apprehension of cardiology practitioners to introduce palliative care) and (2) system level (e.g. lack of availability of personal support worker hours). Conclusions Our results suggest that a collaborative shared model of care delivery between palliative care and cardiology improves knowledge exchange, collaboration and communication between specialties, and leads to more comprehensive patient care. Addressing ongoing barriers will help improve care delivery. Findings emphasize the acceptability of the program from a provider perspective, which is encouraging for future implementation. Further research is needed to improve prognostication, assess patient and caregiver perspectives regarding this model of care, and assess the economic feasibility and impact of this model of care.
Subject(s)
Heart Failure , Palliative Care , Delivery of Health Care , Health Personnel , Heart Failure/therapy , Humans , Palliative Care/methods , Qualitative ResearchABSTRACT
Background: There is a lack of self-management tools for adolescents with cancer (AWC). This study evaluated the feasibility of Teens Taking Charge Cancer, a web-based self-management program. Methods: A pilot randomized control trial (RCT) was conducted across 4 pediatric oncology clinics. AWC (12-18 years) and their caregivers were randomized to either the intervention or control group. All were asked to complete 12 website modules over 12 weeks (at their own pace) and received monthly calls from health coaches. The intervention website was based on cognitive behavioral principals, designed as an interactive self-guided online program, while the control consisted of education and included links to 12 general cancer websites. Outcome assessments occurred at enrollment and 12 weeks post-intervention. The primary outcomes included rate of accrual and retention, adherence to the protocol, acceptability and satisfaction with intervention using questionnaire and semi-structured interviews, adverse events and engagement with the intervention. Results: Eighty-one teen-caregiver dyads were enrolled with a retention rate of 33%. In the intervention group 46% (n = 18) logged in at least once over the 12-week period. A mean of 2.4 of 12 modules (SD 3.0) were completed; and no one completed the program. Thirty-three percent of caregivers in the intervention logged into the website at least once and none completed the full program. Discussion: The results from this pilot study suggest that the current design of the Teens Taking Charge Cancer RCT lacks feasiblity. Future web-based interventions for this group should include additional features to promote uptake and engagement with the program.
Subject(s)
Neoplasms , Self-Management , Child , Adolescent , Humans , Pilot Projects , Surveys and Questionnaires , Neoplasms/therapy , InternetABSTRACT
Chronic pain affects 1 in 5 youth, many of whom manage their pain using a biopsychosocial approach. The COVID-19 pandemic has impacted the way that healthcare is delivered. As part of a larger program of research, this study aimed to understand the impact of the pandemic on pediatric chronic pain care delivery including impact on patients' outcomes, from the perspective of pediatric healthcare providers. A qualitative descriptive study design was used and 21 healthcare providers from various professional roles, clinical settings, and geographic locations across Canada were interviewed. Using a reflexive thematic analysis approach 3 themes were developed: (1) duality of pandemic impact on youth with chronic pain (i.e., how the pandemic influenced self-management while also exacerbating existing socioeconomic inequalities); (2) changes to the healthcare system and clinical practices (i.e., triaging and access to care); (3) shift to virtual care (i.e., role of institutions and hybrid models of care). These findings outline provider perspectives on the positive and negative impacts of the pandemic on youth with chronic pain and highlight the role of socioeconomic status and access to care in relation to chronic pain management during the pandemic in a high-income country with a publicly funded healthcare system.