Managing life with a left ventricular assist device: it takes a village and a self- and family management framework

This invited commentary refers to ‘A dimensional concept analysis on managing life with a left ventricular assist device’ by M. Chehade et al., https://doi.org/10.1093/eurjcn/zvaf218. Surgical implantation of a left ventricular assist device (LVAD) as durable mechanical support has become increasingly common for individuals living with advanced heart failure. Navigating life with this new device takes a village, given the complexities of navigating a device implanted in one’s chest, a drive-line exiting from one’s body, and multiple other adjustments to daily living, relationships, and social roles. Most LVAD patients typically do not manage their devices alone, particularly in the first few days and weeks or even months after hospital discharge. Unfortunately, the family supporting the LVAD patient is often overlooked in LVAD self-management research and theoretical frameworks. The timely, comprehensive dimensional concept analysis by Chehade et al.1 is an important contribution to existing LVAD literature by applying the Middle Range Theory of Self- and Family Management of Chronic Illness (SFM of Chronic Illness) to LVAD research.2,3 The authors’ extensive literature review resulted in a comprehensive collection of 28 articles to provide supporting evidence to apply the SFM of Chronic Illness to a new population, that of patients who live with an LVAD and their family caregivers (care partners). The resulting conceptual map provides a practical link between clinical and research efforts towards more optimal outcomes for LVAD patients and families that emphasizes the collaborative roles of patients, caregivers, and healthcare professionals to optimize LVAD self-management outcomes. Like Chehade et al.1, we noted that the lack of theoretical frameworks to support dyadic LVAD management when designing our longitudinal dyadic study of LVAD patients and care partners in 2024.4 Particularly, we noted that frameworks failed to highlight the critical role played by care partners in LVAD management or care partner outcomes. Similar to the present authors, the study framework we adapted incorporated work by Grey et al. and Schulman-Green, et al.2,3 and further added conceptual work by Lyons and Lee (2018)5 and Buck et al. (2019).6 In their work with heart failure dyads, Lyons and Lee emphasized communication, and Buck et al. emphasized the degree of congruence or incongruence in appraisal (patient vs. care partner) of who is doing what aspects of self-management, and degree of satisfaction about this, from patient and care partner perspective. Left ventricular assist device management takes a village, and communication and congruence between healthcare professionals, patients, and care partners are essential. As clinicians and researchers use a conceptual map for SFM of Chronic Illness, we recommend that the care partners and family should be considered as central to LVAD management and not merely used as a tool to improve LVAD patient outcomes. Balancing care partner and patient autonomy and outcomes is a challenge and requires future research, because historically, in research and clinical care, the care partner outcomes were often not considered or were seen as secondary to patient outcomes. A conceptual map for SFM of Chronic Illness invites researchers to ask several questions in future research. For example, Patient Processes involve activating resources, including ‘delegating daily tasks to caregivers’. A question asked by caregivers may be, ‘At what point (if any) do I stop receiving tasks delegated to me?’, or ‘How can I say no to delegated tasks?’. Researchers may ask questions to better understand longitudinal trajectory of the sharing of LVAD management and how it varies among patients and families. Further, the conceptual maps lead us to ask questions that pertain to ethical implications about what healthcare professionals ask or expect of family care partners and how to best support and balance care partner, family, and patient autonomy and decision-making. Intervention research is urgently needed that includes care partners, families, and patients living with LVADs to improve outcomes for all parties. We are excited to see how SFM of Chronic Illness may be applied to guide testing of future interventions, with an emphasis on targeting the interventions for the village of family members and healthcare professionals who are providing support, with potential impact on patient, care partner, and family outcomes. Kristin E. Sandau (Conceptualization [lead], Writing—original draft [equal], Writing—review & editing [equal]) and Samantha Conley (Writing—review & editing [equal], Writing—original draft [equal]) None. No new data were generated or analysed in support of this commentary.