BackgroundThe broad spectrum of issues that survivors face after critical illness and the contextual factors that help or hinder remain underexplored, as do their perspectives on what is important during recovery. Photovoice methods offer a means to convey experiences through participant-generated photographs and related narratives that can extend existing notions of illness and wellness. ObjectiveThis pilot study aimed to (1) describe intensive care unit (ICU) survivor recovery after hospital discharge depicted through survivor-generated photographs and photograph discussions, (2) assess the feasibility of recruiting and retaining participants in a web-based group photovoice focused on ICU recovery, and (3) describe the impact of study participation. MethodsThe web-based group photovoice involved 5 weekly 2-hour group discussion sessions, after which individual interviews were conducted with each participant. Photographs and transcript data from the group discussions and individual interviews were analyzed using a qualitative interpretive description approach. ResultsA total of 5 ICU survivors (4 women and 1 man) participated. The aspects of critical illness recovery that featured prominently included (1) protracted physical recovery; (2) profound psychosocial challenges encompassing fear of the future, emotional turmoil, shifting self-perception, changes in family dynamics, and feelings of disconnection; (3) discrepancies in health needs and support offered; and (4) need for perseverance and resilience. The web-based group photovoice was feasible, with participation characterized as an opportunity to build social connections and draw strength from fellow survivors of critical illness unavailable elsewhere. ConclusionsGiven the compelling insights our pilot study provided into lesser-explored aspects of critical illness recovery, along with its potential therapeutic value and ability to foster social connectedness, future research is warranted to assess the impact of a scaled-up application.
BACKGROUND:Healthcare innovations have not kept pace with the burden of critical illness survivorship. The majority of patients treated in an intensive care unit (ICU) will survive but suffer new or worsening physical, cognitive or mental health sequelae, known as post-intensive care syndrome (PICS). For these survivors, the transition from hospital-based acute care to community-based care is often complex, with high rates of emergency department visits and unplanned hospital readmission. The purpose of this analysis is to describe ICU survivor and family caregiver experiences navigating the challenges in the transition from hospital to home. METHODS:In this qualitative interpretive description study, data from semi-structured interviews with ICU survivors and family caregivers in the months following discharge from the hospital to home were analyzed using thematic and constant comparative methods. RESULTS:The 47 study participants included 28 survivors (mean age 58, 17 men and 11 women) and 19 family caregivers (mean age 53, 6 men and 13 women), who represented 32 cases. The challenges experienced when transitioning from hospital included (1) feeling too ill to go home and pushed out of the hospital without a plan, (2) confronting illness and exhaustion without a safety net, and (3) managing at home with inadequate healthcare. During this time, patients were vulnerable to stagnation or deterioration of their mental and physical health, unmet healthcare needs, and unplanned emergency department visits and rehospitalization. CONCLUSIONS:The challenging transition from the hospital setting suggests a heightened window of vulnerability in the initial months post-discharge and emphasizes a crucial missing middle in our healthcare system, leaving vulnerable patients at risk for ongoing and new health problems.
OBJECTIVES:To explore the breadth of social, demographic, and economic (SDE) factors reported in critical illness survivorship research, with a focus on how they impact survivorship outcomes. DATA SOURCES:We obtained articles from Medline, Embase, PsycInfo, and CINAHL, as well as reference list reviews of included articles and relevant reviews captured by searches. STUDY SELECTION:SDE factors were defined as any nonmedical factor that can influence outcomes. We included primary studies published in English that explored SDE factors as an independent variable or as an outcome in post-ICU survivorship of adults. Two authors independently assessed each study for inclusion in duplicate, and conflicts were resolved by consensus. Our searches returned 7151 records, of which 83 were included for data extraction and final review. DATA EXTRACTION:We used a standardized data collection form to extract data, focusing on the characteristics of each study (i.e., year and country of publication), SDE factors explored, how the factors were measured, the impacts of SDE factors on post-ICU survivorship outcomes, and the impacts of ICU admission on SDE outcomes. DATA SYNTHESIS:We summarized the relationships between SDE factors and ICU survivorship in table format and performed a narrative synthesis. We identified 16 unique SDE factors explored in the current literature. We found that generally, higher education, income, and socioeconomic status were associated with better outcomes post-ICU; while non-White race, public insurance status, and social vulnerability were associated with poorer outcomes. CONCLUSIONS:Various SDE factors have been explored in the critical illness survivorship literature and many are associated with post-ICU outcomes with varying effect sizes. There remains a gap in understanding longitudinal outcomes, mechanisms of how SDE factors interact with outcomes, and of the complexity and interconnectedness of these factors, all of which will be instrumental in guiding interventions to improve post-ICU survivorship.
OBJECTIVES:This participatory, mixed methods study will explore how iHEAL, a woman-led, nurse-delivered health promotion intervention for women who have experienced intimate partner violence (IPV), can be implemented in real-world, community-based health care settings located in 3 Canadian provinces. Grounded in the Active Implementation Frameworks, the study's primary aim is to identify the processes, resources and supports necessary to implement and sustain this novel program with fidelity while maintaining its benefits for women. METHODS/DESIGN:Over 2.5 years, each organization will plan for and deliver the iHEAL program, supported by an iHEAL Consultant. To explore implementation processes and fidelity, successes and challenges, and any value-added of iHEAL to organizations and/or communities, qualitative interviews will be conducted with 3 groups of participants: 1) organizational leaders; 2) implementation/delivery team members (nurses and supervisors); and 3) external stakeholders or agencies supporting iHEAL through referrals or other collaboration. High level notes capturing key issues and decisions at planning meetings will supplement these data. Administrative program data will be collected to assess program reach, participant engagement, and aspects of fidelity. Women participating in iHEAL will also be invited to complete pre/post intervention surveys to assess changes in key outcomes, with a subsample of 60 women to be interviewed about their experiences of iHEAL and suggestions for strengthening the program. Qualitative data will be analyzed using Rapid Team Based Qualitative Analysis and Reflective Thematic Analysis. Quantitative data will be summarized using descriptive statistics; pre-post intervention changes in outcomes collected in women's surveys will be analyzed using paired t-tests. Ethical approval has been obtained, and all participants will provide informed consent. SIGNIFICANCE:The findings of this research are expected to yield insights about organizational factors that shape the delivery of iHEAL and support the development of guidance materials for future iHEAL implementation and scale up.
Background When critical illness survivors are discharged home, they encounter a myriad of physical, emotional, cognitive, and socioeconomic challenges which can endure for an extended period of recovery. Given the extent of patient need, family members often assume the role of informal caregivers. The work inherent in this role can significantly compromise their own health, which can, in turn, influence the nature and trajectory of recovery for the survivor.Purpose This study aimed to describe the role of informal family caregivers in patient recovery from critical illness following hospitalisation, in the context of publicly-funded healthcare and where there were no critical care follow-up or aftercare programmes.Methods Guided by a qualitative, interpretive description approach, in-depth semi-structured interviews were conducted with 25 family caregivers of patients recovering from critical illness at home. In total, 29 interviews were conducted: 21 caregivers were interviewed once, and 4 caregivers were interviewed twice. Interview data were analyzed thematically using inductive, constant comparative methods.Results The nature of family caregiving was grounded in the patient's condition, whether it involved slow recovery vs stagnation or decline, and the caregiver's capacity to engage in care. Caregivers influenced patient recovery by (1) assuming daily living and physical care responsibilities; (2) providing motivational and emotional support; (3) searching for and gathering information; (4) monitoring and supervising health and treatment; and (5) managing medical appointments and advocating for resources.Conclusions Family caregivers fulfilled a central role in managing a wide range of needs of survivors, found to be pivotal for their recovery. Policy and practical support are needed to help caregivers fulfil this role alongside meeting their own personal challenges and responsibilities.
ObjectivesThere are health disparities and inequities in the outcomes of critical illness survivors related to the influence of social determinants of health on recovery. The purpose of this study was to describe the relationship between critical illness recovery and the intermediary social determinants of health in the Canadian context. Because Canadian healthcare is provided within a universal publicly funded system, this analysis sheds light on the role of social determinants of health in the context of universal health services and a relatively robust social safety net.DesignIn this qualitative interpretive description study, data from semi-structured interviews with intensive care unit survivors, family caregivers and healthcare providers were analysed using thematic and constant comparative methods.SettingWestern Canadian Hospital serving a population of 900 000 people.ParticipantsThe 74 study participants included 30 patients (mean age 58 years, 18 men and 12 women) and 25 family caregivers (mean age 55 years, 8 men and 17 women), representing 37 cases, as well as 19 healthcare providers.ResultsChallenges with employment and finances, home set-up, transportation, food and nutrition, medications and social support complicated and hindered critical illness recovery. Critical illness sequelae also altered these social determinants of health, suggesting a reciprocal relationship. Furthermore, individuals experiencing socioeconomic disadvantage before critical illness described being at a greater disadvantage following their critical illness, which interfered with their recovery and suggests an accumulation of risk for some.ConclusionsOur findings underscore the significant influence of social determinants of health on critical illness recovery, highlighting the importance of creating and evaluating comprehensive approaches to health and well-being that address health inequities.
www.ccejournal.org 1 DOI: 10.1097/CCE.0000000000000783 Copyright © 2022 The Authors. Published by Wolters Kluwer Health, Inc. on behalf of the Society of Critical Care Medicine. This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBYNC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal.
Background The importance of patient-centered measurement in cancer care has led to recognition of the potential for caregiver-reported outcomes to improve caregiver, patient and healthcare system outcomes. Yet, there is limited evidence to inform caregiver-reported outcome implementation. Our purpose was to generate evidence to inform the meaningful and constructive integration of caregiver-reported outcomes into cancer care to benefit caregivers, including exploration of the question of the extent to which these assessments should be shared with patients. We focused on caregivers of patients with colorectal cancer (CRC) because CRC is common, and associated caregiving can be complex. Results From our Interpretive Description analysis of qualitative interview data from 78 participants (25 caregivers, 37 patients, and 16 healthcare providers [HCPs]), we identified contrasting perspectives about the sharing of caregiver-reported outcome assessments with patients with CRC. Those who preferred open communication with both the patient and caregiver present considered this essential for supporting the caregiver. The participants who preferred private communication without the patient, cited concern about caregiver- and patient-burden and guilt. Recognizing these perspectives, HCPs described strategies used to navigate sensitivities inherent in preferences for open versus private communication. Conclusions The integration of caregiver-reported outcomes into cancer care will require careful consideration of caregiver and patient preferences regarding the communication of caregiver assessments to prevent additional burden.
Family caregivers of patients with cancer provide substantial physical, emotional, and functional care throughout the cancer trajectory. While caregiving can create employment and financial challenges, there is insufficient evidence to inform the development of caregiver-reported outcomes (CROs) that assess these experiences. The study purpose was to describe the occupational and financial consequences that were important to family caregivers of a patient with colorectal cancer (CRC) in the context of public health care, which represent potential considerations for CROs. In this qualitative Interpretive Description study, we analyzed interview data from 78 participants (25 caregivers, 37 patients, and 16 healthcare providers). Our findings point to temporary and long-term occupational and financial setbacks in the context of CRC. Caregiving for a person with CRC involved managing occupational implications, including (1) revamping employment arrangements, and (2) juggling work, family, and household demands. Caregiver financial struggles included (1) responding to financial demands at various stages of life, and (2) facing the spectre of lifelong expenses. Study findings offer novel insight into the cancer-related occupational and financial challenges facing caregivers, despite government-funded universal health care. Further research is warranted to develop CRO measures that assess the multifaceted nature of these challenges.
Colorectal cancer (CRC) can be demanding for primary caregivers; yet, there is insufficient evidence describing the caregiver-reported outcomes (CROs) that matter most to caregivers. CROs refer to caregivers’ assessments of their own health status as a result of supporting a patient. The study purpose was to describe the emotions that were most impactful to caregivers of patients with CRC, and how the importance caregivers attribute to these emotions changed from diagnosis throughout treatment. Guided by qualitative Interpretive Description, we analyzed 25 caregiver and 37 CRC patient interviews, either as individuals or as caregiver-patient dyads (six interviews), using inductive coding and constant comparative techniques. We found that the emotional aspect of caring for a patient with CRC was at the heart of caregiving. Caregiver experiences that engendered emotions of consequence included: (1) facing the patient’s life-changing diagnosis and an uncertain future, (2) needing to be with the patient throughout the never-ending nightmare of treatment, (3) bearing witness to patient suffering, (4) being worn down by unrelenting caregiver responsibilities, (5) navigating their relationship, and (6) enduring unwanted change. The broad range of emotions important to caregivers contributes to comprehensive foundational evidence for future conceptualization and the use of CROs.
Background The incidence of atherosclerotic cardiovascular disease has declined in the past 2 decades. However, these benefits may not extend to young patients. The objective of this work was to assess temporal trends in the incidence, risk profiles, sex‐related differences, and outcomes in a contemporary population of young patients presenting with coronary artery disease (CAD) in British Columbia, Canada. Methods and Results We used a provincial cardiac registry to identify young patients (men aged <50 years, women aged <55 years), with a first presentation of CAD between 2000 and 2016, who had either ≥50% stenosis of ≥1 coronary arteries on angiography or underwent coronary revascularization. A total of 12 519 patients (30% women) met our inclusion criteria. The incidence of CAD remained stable and was higher for men than women (46–53 versus 18–23 per 100 000). Of patients, 92% had at least one traditional cardiovascular risk factor and 67% had multiple risk factors. The prevalence of diabetes mellitus, obesity, and hypertension increased during the study period and was higher for women. Women had fewer emergent procedures and revascularizations. Mortality rates decreased by 31% between 2000 and 2007, then were stable for the remaining 9 years. Mortality was significantly higher for women aged <45 years compared with men. Conclusions The incidence of premature CAD has not declined, and the prevalence of 3 major cardiovascular risk factors increased between 2000 and 2016. The risk burden and mortality rates were worse for women. These data have important implications for the design of strategies to prevent CAD in young adults.
Atherosclerotic cardiovascular disease (ASCVD) is highly heritable, particularly when it occurs at a young age. The screening of individuals with premature ASCVD, although often recommended, is not routinely performed. Strategies to address this gap in care are essential. We designed the Study to Avoid CardioVascular Events in British Columbia (SAVE BC) as a prospective, observational study of individuals with a new diagnosis of very premature ASCVD (defined as age ≤ 50 years in males and age ≤ 55 years in females) and their first‐degree relatives (FDRs) and spouses. FDRs and spouses will undergo screening for cardiovascular (CV) risk factors and subclinical ASCVD using a structured screening algorithm. All subjects will be followed longitudinally for ≥10 years. The overall goal of SAVE BC is to evaluate the yield of a structured screening program for identifying individuals at risk of premature ASCVD. The primary objectives of SAVE BC are to identify and follow index cases with very premature ASCVD and their FDRs and to determine the diagnostic yield of a structured screening program for these individuals. We will collect data on CV risk factors, medication use, CV events, and healthcare costs in these individuals. SAVE BC will provide insight regarding approaches to identify individuals at risk for premature ASCVD with implications for prevention and treatment in this population.
BACKGROUND:Optimal design of clinical programs for patients with premature atherosclerotic cardiovascular disease (ASCVD) (men aged ≤ 50 years, women aged ≤ 55 years) requires an understanding of their priorities. We aimed to explore patient and family priorities for services in clinical programs.METHODS:We co-designed this study with a Patient Partner Committee using a sequential exploratory mixed-methods design. In Phase I, we conducted semistructured interviews with participants from the Study to Avoid Cardiovascular Events in British Columbia (SAVE BC) (n = 15). In Phase II, we designed a questionnaire based on Phase I data and distributed it to all current SAVE BC participants. We collected close-ended responses (n = 116) and stratified data using participant category (index, family member), age, sex, and number of clinic visits.RESULTS:We identified 4 major priorities for services in clinical programs: social support (weight: 62.6%), patient education (weight: 83.5%), mental health (weight: 50.7%), and lifestyle changes (85.1%). To address these priorities, participants wanted ASCVD clinical programs to enable recruitment of their family members, establish a comprehensive education component (with research updates in research programs), deliver mental health screening and support after myocardial infarction, and provide longitudinal sessions to support maintenance of lifestyle modifications. These services were identified in Phase I and verified in Phase II.CONCLUSION:We identified 4 priorities for services in clinical programs designed for patients with premature ASCVD and their families. Further research should be done to elucidate their outcomes and most effective methods to provide these services.