Exploring Health Care Providers' Experiences of Providing Collaborative Palliative Care for Patients With Advanced Heart Failure At Home: A Qualitative Study.

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.

A Pilot Randomized Control Trial of Teens Taking Charge: A Web-based Self-management Program for Adolescents with Cancer.

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.

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.

"Going Home [Is] Just a Feel-Good Idea With No Structure": A Qualitative Exploration of Patient and Family Caregiver Needs When Transitioning From Hospital to Home in Palliative Care.

CONTEXT: Hospital-to-home transitions, particularly at the end of life, can be challenging for patients and their family caregivers. Therefore, there is a need to better understand gaps in expectations and experiences of these transitions. Theory can inform the creation of an intervention aimed at improving the hospital-to-home transition. OBJECTIVES: 1) Explore patients' and caregivers' expectations and subsequent experiences of the hospital-to-home transition while receiving palliative care, and 2) build a substantive grounded theory to enhance the understanding of hospital-to-home transitions from the patient and caregiver perspective. METHODS: Longitudinal, prospective qualitative study with semistructured interviews at hospital discharge and three to four weeks after discharge home. We recruited adults receiving inpatient palliative care who were being discharged to home-based palliative care, and their family caregivers from two academic health centers in Toronto, Canada. Thirty-nine participants: 18 patients, 7 caregivers, and 7 patient-caregiver dyads participated. We conducted 52 interviews. We conducted a grounded theory qualitative study. RESULTS: Through examining the expectations and subsequent experiences of the transition, and exploring the gaps between them, we identified various transitions needs: health and well-being needs, and practical needs (i.e., transportation, setting up the home for care, care providers in the home). Several enablers and disablers modified the likelihood of needs being met (e.g., caregiver role, education on symptom management, uncertainty, financial resources). CONCLUSION: Our substantive grounded theory highlighted potentially measurable constructs that can be further tested. Future interventions should target the enablers/disablers to ensure health and well-being and practical needs are met in the transition.

Transitioning From Hospital to Palliative Care at Home: Patient and Caregiver Perceptions of Continuity of Care.

CONTEXT: Continuity of care is important at improving the patient experience and reducing unnecessary hospitalizations when transitioning across care settings, especially at the end of life. OBJECTIVE: To explore patient and caregiver understanding and valuation of "continuity of care" while transitioning from an in-hospital to a home-based palliative care team. METHODS: Longitudinal qualitative design using semistructured interviews conducted with patients and their caregivers before and after transitioning from hospital to palliative care at home. Interviews were audio-recorded and transcribed verbatim. Data were analyzed using thematic analysis within a postpositivist framework. Thirty-nine participants (18 patients, seven caregivers, and seven patient-caregiver dyads) were recruited from two acute care hospitals, wherein they received care from an inpatient palliative care consultation team and transitioned to home-based palliative care. RESULTS: Patients had a mean age of 68 years, 60% were female and 60% had a diagnosis of cancer. Caregivers had a mean age of 62 years and 50% were female. Participants perceived continuity of care to occur in three ways, depending on which stage they were at in their hospital-to-home transition. In hospital, continuity of care was experienced, as consistency of information exchanged between providers. During the transition from hospital to home, continuity of care was experienced as consistency of treatments. When receiving home-based palliative care, continuity of care was experienced as having consistent providers. CONCLUSION: Patients' and their caregivers' valuation of continuity of care was dependent on their stage of the hospital-to-home transition. Optimizing continuity of care requires an integrated network of providers with reliable information transfer and communication.

Palliative care transitions from acute care to community-based care: A qualitative systematic review of the experiences and perspectives of health care providers.

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.

Palliative Care Transitions From Acute Care to Community-Based Care-A Systematic Review.

CONTEXT: Although the literature on transitions from hospital to the community is extensive, little is known about this experience within the context of palliative care (PC). OBJECTIVE: We conducted a systematic review to investigate the impact of receiving palliative care in hospital on the transition from hospital to the community. METHODS: We systematically searched MEDLINE, Embase, ProQuest, and CINAHL from 1995 until April 10, 2018, and extracted relevant references. Eligible articles were published in English, included adult patients receiving PC as inpatients, and explored transitions from hospital to the community. RESULTS: A total of 1514 studies were identified and eight met inclusion criteria. Studies were published recently (>2012; n = 7, 88%). Specialist PC interventions were delivered by multidisciplinary care teams as part of inpatient PC triggers, discharge planning programs, and transitional care programs. Common outcomes reported with significant findings consisted of length of stay (n = 5), discharge support (n = 5), and hospital readmissions (n = 6) for those who received inpatient PC. Most studies were at high risk of bias. CONCLUSION: Heterogeneity of study designs, outcomes, findings, and poor methodological quality renders it challenging to draw conclusions regarding PC's impact on the transition from hospital to home. Further research should use standardized outcomes with randomized controlled trial and/or propensity matched cohort designs.

BiVADs: a bridge to the future for patients and their families: the art and science of nursing combined in the face of technology.

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.