A Mixed-Methods Feasibility Study: Eliciting ICU Experiences and Measuring Outcomes of Family Caregivers of Patients Who Have Undergone Hematopoietic Stem Cell Transplantation

Abstract

The impact of an intensive care unit (ICU) admission on family caregivers of patients who have undergone hematopoietic stem cell transplantation (HSCT) has not been well described. Aims of this study were to determine the feasibility of conducting research with family caregivers of HSCT patients during an ICU admission and generate preliminary data about their experiences and engagement in care. Using a mixed-methods, repeated measures design, we collected data from family caregivers after 48 hr in the ICU (T1) and at 48 hr after transferring out of ICU (T2). Enrolling HSCT caregivers in research while in the ICU was feasible (10/13 consented; 9/10 completed data collection at T1); however, data collection at T2 was not possible for most caregivers. Caregiver distress levels were high, and engagement in care was moderate. The three themes that emerged from interviews ( n = 5) highlighted that although HSCT family caregivers faced many challenges and received limited support during their ICU experience, they were able to access their own personal resources and demonstrated resilience.

Family-focused practice and policy recommendations to improve the inpatient experience for patients undergoing a stem cell transplant.

“…Policies restricting visitors negatively impact family coping and contribute to adverse patient outcomes, including increased physical pain, loneliness, agitation, reduced oral intake, and worsened mental health (Hugelius et al, 2021). In one-on-one interviews with family caregivers of HCT patients in the intensive care unit, caregivers expressed how important it was to their own well-being to be present at the bedside to support and advocate for the patient (McAndrew et al, 2023). These caregivers expressed feelings of helplessness and concern when the pandemic restricted their access to their loved ones.…”

“…We chose to add variables from Fife et al’s (2009) conceptual model of HCT experience because it is specific to HCT family caregivers’ experiences and includes factors relevant to the HCT illness and treatment context. We added the variable family engagement in HCT care to our model based on the patient and family engagement framework (Carman et al, 2013) as well as our team’s expertise in family engagement and the theoretical and empirical work they have completed in this area (Hetland et al, 2022; Jerofke-Owen et al, 2022; McAndrew et al, 2022, 2023; McAndrew, Mark, & Butler, 2020; McAndrew, Schiffman, & Leske, 2020). Family engagement is an active process of developing relationships with families, and ultimately partnerships, that can improve the quality and safety of care (Carman et al, 2013; Jerofke-Owen et al, 2022).…”