Involving Families in Cardiac Care through Remote Patient and Family Management: Focus Group and Journey Mapping Study (Preprint)

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Abstract
Background: In cardiovascular care, illness and recovery affect both patients and their families, particularly within home-based remote patient management (RPM). A recent scientific statement from the American Heart Association highlighted the importance of family involvement, identifying digital technologies as a key enabling opportunity. Despite this, research into the needs of families and the implications of RPM remains limited. Objective: This study explored the lived experiences and unmet needs of patients with cardiovascular disease (CVD) and their relatives within RPM-supported cardiac care, using perioperative care and myocardial infarction as representative trajectories. Based on the identified gaps, we proposed a set of features for remote patient and family management (RPFM) interventions to address these needs. Methods: This qualitative study was conducted at a Dutch university hospital with over a decade of experience in RPM across CVD pathways. A human-centered design approach was employed, including focus groups with 24 participants (13 patients with CVD and 11 relatives). Data analysis followed a framework analysis approach, combining inductive theme identification with deductive mapping onto existing frameworks. Care experiences and unmet needs were identified inductively and segmented along the Family Systems Illness Model’s phases of illness. The needs were subsequently categorized deductively into the domains of the Supportive Care Framework. Based on these user-informed insights, RPFM features were generated through author ideation and internal team consensus. Finally, these experiences, needs, and features were synthesized into a visual journey map illustrating key care moments across 3 phases: preadmission, admission, and postadmission. Results: We identified 47 unmet needs across 6 domains: informational (n=13), psychoemotional (n=13), social (n=7), physical (n=7), practical (n=6), and spiritual (n=1). The most significant gaps, described as “black holes” in care and support, emerged during the preoperative waiting period and early home recovery, which were characterized by a lack of information and psychoemotional support. To address the identified unmet needs, we generated 33 RPFM intervention feature ideas. These RPFM features were mapped across care phases and grouped into 7 categories: dynamic pathway navigation (n=8), on-demand support and information (n=5), family well-being modules (n=5), medical translation and consultation support (n=4), safety and assurance monitoring (n=4), collaborative lifestyle management (n=4), and peer support platform (n=3). Conclusions: This study identified experience gaps in RPM-supported cardiac care. It showed that most unmet needs for care and support extend beyond hospital admission and discharge and that most health behaviors and recovery occur in the home context, within the patient’s relational ecosystem with loved ones. The proposed RPFM features provide preliminary directions for exploration toward a transition from individually focused monitoring to inclusive, family-centered care and management.

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