Discussion Guide for the Moale Article

With the greater focus on patient- and family-centered health care, family caregivers have emerged as essential members of the care team. Family caregivers report positive experiences, but the demands of the role can harm their health. For example, symptoms of caregiver burden, anxiety, depression, fatigue, and posttraumatic stress disorder are alarmingly prevalent among caregivers of critical illness survivors. This cluster of symptoms is included under post– intensive care syndrome–family (PICS-F) and is associated with mortality among caregivers and care recipients. Yet interventions for PICS-F symptoms have shown inconsistent benefits, indicating that our understanding of family caregivers' needs across the post–intensive care unit (ICU) continuum may be inadequate. Notably, prior studies have not integrated caregivers' perspectives with those of relevant stakeholders across the care continuum, nor have they examined how social determinants of health (SDOH) influence such perspectives. Furthermore, it is unclear how more general models of family caregiving correspond to the experiences of ICU family caregivers, which may inform translation of interventions from other caregiving populations to the post-ICU context. In response, the authors conducted interviews and focus groups with caregivers and health care providers and administrators to understand diverse perspectives on caregivers' needs, barriers, and facilitators in the critical illness continuum, with a focus on SDOH, and then evaluated how these findings aligned with existing caregiving literature and models for potential generalization to the post-ICU context.This comprehensive qualitative research study investigated perspectives on PICS and PICS-F across the care continuum. Data were collected through interviews and focus groups involving family caregivers, and health care providers and administrators in western Pennsylvania between February 2020 and March 2022. The study focused on transitions from quaternary care hospitals to Health Resources and Services Administration–designated shortage areas (HRSA-SAs) to ensure diverse representation and applicability. Purposive and chain sampling were used to ensure diversity among participants. Participants were recruited via email, in-person meetings, professional networks, and referrals. Interviews and focus groups were conducted by trained interviewers, and the collected data were transcribed and deidentified for analysis. Deductive and inductive coding methods were used to identify key themes related to caregiver needs, facilitators, and barriers. The impact of SDOH on caregivers' experiences was explored, highlighting the importance of factors such as economic stability, access to resources, and proximity to care centers. The researchers identified 4 main caregiver needs: support, involvement in care planning, caregiving education and training, and self-care. Four themes emerged from the data: the recognition of instrumental needs by all parties, the unique recognition of self-care and mental health needs by caregivers, the critical role of SDOH as facilitators or barriers in caregivers' journeys, and the acknowledgment that caregiving itself is a social determinant of health. Overall, the study offers valuable insights into the complexity of caregiving in the post-ICU context and underscores the importance of addressing caregivers' needs within the broader context of SDOH.Amanda Moale, MD, values connecting with families: "While discussing serious illness can be difficult, I also find the privilege of gaining insights into families' lives and their unique journeys to be incredibly rewarding." Through these experiences, she recognized that family members "are often insufficiently prepared and equipped for their caregiving experience and responsibilities" both during and after the patient's ICU stay. Thus, Dr Moale's research program focuses on "improving families' experiences and care along the critical illness continuum." On arriving at the University of Pittsburgh in 2021 for a pulmonary and critical care fellowship, she connected with Leslie Scheunemann, MD, MPH, who had recently led the parent qualitative study and gave Dr Moale the opportunity to "spearhead the thematic analysis and interpretation of the data focused on caregivers' needs, barriers, and facilitators to addressing them."From her experience leading this analysis, Dr Moale emphasizes the value of interdisciplinary collaboration. This study team comprised experts in health services, qualitative methods, physical medicine and rehabilitation, and psychiatry who brought "distinct insights to the conceptualization and conduct of this study and the application of our results." Despite the benefits of transdisciplinary research, Dr Moale adds, "shared goals and upfront identification of roles and responsibilities are essential for effective collaboration and productivity." Dr Moale also encourages aspiring researchers to remain adaptable. "While we often develop our research aims and strategies on a linear timeline, be flexible if insights and perspectives steer you in a different direction."Dr Moale's research brings to light the urgent need for health care systems to evolve toward more inclusive care models that genuinely recognize and support caregivers as indispensable partners across the patient care continuum. Her work underscores the need to develop tailored interventions for caregivers of ICU survivors. These interventions must bridge the existing support gap by leveraging insights from broader caregiving literature that "might generalize and be more readily adaptable to the post-ICU context." Dr Moale asserts that "our current health care system is not designed to address caregivers' needs," suggesting that a paradigm shift toward family-centered care that prioritizes "caregivers' acquisition of their instrumental needs along-side education and training in self-care and mental health while caregiving" is needed. Such an approach would not only enhance caregiver well-being but also ensure that patients receive comprehensive, empathetic care. Dr Moale concludes, "the shift to family-centered care and the delivery of equitable caregiver interventions require advocacy and reprioritization at the individual, institutional, and societal level."This feature briefly describes the personal journey and background story of the EBR article's lead investigators, discussing the circumstances that led them to undertake the line of inquiry represented in the research article featured in this issue.Amanda C. Moale, MD, discovered her "passion for working with and caring for patients with serious illness and their families" as a hospice volunteer while an undergraduate student at the University of Florida. These experiences led her to pursue medical school. After earning her MD from the University of South Florida, she completed an internal medicine residency program at Johns Hopkins Hospital, where she found "critical care to be a specialty where I was both regularly caring for and communicating with" the critically ill and their families. She is currently a postdoctoral research scholar in her final year of a pulmonary and critical care medicine fellowship at the University of Pittsburgh. Dr Moale believes that her "most compelling and enjoyable research projects stemmed directly from the insights shared by patients and their families." Eventually she aims to develop collaborative decisional support interventions for families of individuals with acute and chronic critical illness. She plans to design these interventions by using community-based participatory research and human-centered design methods.