Examining the Course of Transitions from Hospital to Home-based Palliative Care: A Mixed Methods Study

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

Advance Care Planning in Advanced Heart Failure: A Relational Exploration of Autonomy

Advance care planning (ACP) is the process of understanding and sharing personal values and goals to ensure people with serious illnesses receive healthcare and treatment that is consistent with their goals and preferences. With the increasing number of treatment options available to patients living with advanced heart failure (HF), ACP is regarded as a means of preserving individual autonomy throughout the illness trajectory. Despite significant public awareness campaigns, research and interventions developed to increase participation in ACP, this practice remains severely under-utilized by those who are chronically ill. This gap in practice highlights the need for further exploration of how patients, families and healthcare providers (HCP) engage with ACP as a practice that is intended to promote patient autonomy. Therefore, the aim of this research was to gain an understanding of how patients, families and healthcare providers (HCP) understand and express their autonomy within the process of ACP. Critical qualitative multiple case study methodology, guided feminist ethics and relational autonomy, was used. Patients with advanced HF were purposefully recruited from two sites; cases were constructed using data from 19 interviews with seven patients, eight caregivers, and nine HCPs. Constructions of autonomy were developed using within and across-case analysis, guided by relational conceptualizations of autonomy. There were three key findings that resulted from this study. First, ACP is understood as external to treatment decision making within the current biomedical landscape, with a specific focus on the power of the legal model. Second, the experience of autonomy in advanced HF is incongruent with the dominant individualistic approach and instead, is a relational experience that is based on relationships of trust. Finally, ACP is influenced by interpersonal relationships and responsibilities as well as interpersonal and social power dynamics. Although ACP is considered a practice that preserves individual autonomy, interpersonal, institutional and societal level relationships were all heavily influential in this practice. Future research and practice endeavors should consider the advancement of ACP (and the enactment of autonomy) using a relational framework that acknowledges autonomy is experienced within the context of institutional, social, and interpersonal relationships.Ph.D

Pediatric chronic pain in the midst of the COVID-19 pandemic: Lived experiences of youth and parents

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-August 2020 and enabled participants to describe their experiences of the COVID-19 pandemic according to their own unique perspectives. Transcripts were analysed 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

COVID-19 Pandemic Impact and Response in Canadian Pediatric Chronic Pain Care: A National Survey of Medical Directors and Pain Professionals

Background: The COVID-19 pandemic presents one of the greatest threats to pediatric pain care seen in generations. Due to public health restrictions, many pediatric pain clinics halted in-person appointments, delaying and disrupting access to care. There is no existing research on the impacts of COVID-19 on pediatric chronic pain care in Canada or the challenges experienced by health care professionals and pain clinics. Aims: The aim of this study was to evaluate the impact of COVID-19 on Canadian pediatric chronic pain care by documenting how health care professionals provided care during the first six months of the pandemic. Methods: Two Canadian online cross-sectional surveys were conducted: one among Canadian pediatric pain clinic directors (Study 1) and another among multidisciplinary pediatric pain health care professionals (Study 2). Results: Responses from 13/13 Canadian pediatric pain clinics/rehabilitation programs indicated that all clinics provided virtual care during the pandemic. No significant changes were reported on the frequency of appointment requests. Most clinics reported no perceived change in patient pain levels (n = 9/13, 69%) or occurrence of pain flares (n = 10/13, 77%). Results from 151 individual health care professionals indicated that the majority (90%) of non–emergency department respondents were providing virtual care. The main challenges of virtual care included technological barriers, financial concerns, infrastructure and logistics, privacy, and clinical challenges. Conclusions: This study documented the impact of the COVID-19 pandemic on pediatric chronic pain care in Canada and highlighted the rapid shift to using virtual solutions. Simultaneously, respondents outlined current challenges and potential solutions to consider in the development of virtual care guidelines and policy in Canada

“We survived the pandemic together”: The impact of the COVID-19 pandemic on Canadian families living with chronic pain

ABSTRACTIntroduction 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

Experiences of Pediatric Pain Professionals Providing Care during the COVID-19 Pandemic: A Qualitative Study

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