"I Just Wanted Nothing More Than to Get in a Real Shower": Patient Experience of the Inpatient Wait for a Heart Transplant.

BACKGROUND: Patients waiting for heart transplant may be hospitalized for weeks to months before undergoing transplantation. This high-stress period is further complicated by restrictions of daily privileges including diet, rooming, access to the outdoors, and hygiene (eg, limited in ability to shower). However, there is a paucity of research on the experience of this waiting period. We sought to describe the inpatient experience among patients awaiting heart transplantation and to better understand the needs of inpatients waiting for heart transplant. METHODS AND RESULTS: We conducted in-depth, semistructured phone interviews with a purposeful sample of patients who received a heart transplant in the past 10 years and waited in the hospital for at least 2 weeks before surgery. Using the prior literature, the lived experience of the lead author, and input from qualitative experts, we developed an interview guide. Interviews were recorded, transcribed, and analyzed in an iterative process until theoretical saturation was achieved. A 3-person coding team identified, discussed, and reconciled emergent themes. We conducted interviews with 15 patients. Overarching themes included food, hygiene, relationship with health care professionals, living environment, and stressors. Patients reported that strong bonds were formed between the patients and the staff, and the overwhelming majority only had positive comments about these relationships. However, many expressed negative comments about the experience of the food and limitations in personal hygiene. Other stressors included the unknown length of the waiting period, lack of communication about position on the transplant list, worry about family, and concerns that their life must be saved by the death of another. Many participants described that they would benefit from more interaction with recent heart transplant recipients. CONCLUSIONS: Hospitals and care units have the opportunity to make small changes that could greatly benefit the experience of waiting for a heart transplant, as well as the experience of hospitalization more generally.

Engagement in Early Intervention Services Among Mothers in Recovery From Opioid Use Disorders.

BACKGROUND AND OBJECTIVES: Opioid-exposed infants frequently qualify for early intervention (EI). However, many eligible families choose not to enroll in this voluntary service. This study aims to understand the perceptions and experiences that may impact engagement with, and the potential benefits of, EI services among mothers in recovery from opioid use disorders (OUDs). METHODS: We conducted semistructured qualitative interviews (n = 22) and 1 focus group (n = 6) with mothers in recovery from OUDs in western Massachusetts. Transcripts were coded and analyzed by using a descriptive approach. RESULTS: The mean participant age was 32 years, and 13 had a high school degree or less. Five major themes emerged revealing mothers' development through stages of engagement in EI services: (1) fear, guilt, and shame related to drug use (emotions acting as barriers to enrollment); (2) the question of whether it is "needed" (deciding whether there is value in EI for opioid-exposed infants); (3) starting with "judgment" (baseline level of perceived stigma that parents in recovery associate with EI); (4) breaking down the "wall" (how parents overcome the fear and perceived judgment to build partnerships with providers); and (5) "above and beyond" (need for a personal connection with mothers and concrete supports through EI in addition to the child-focused services provided). CONCLUSIONS: Barriers to engagement in EI among mothers in recovery from OUDs include a range of emotions, perceived stigma, and ambivalence. An effort to purposefully listen to and care for mothers through a strengths-based, bigenerational approach may help establish greater connections and foster stronger EI engagement among families affected by OUDs.