Maternal experiences of caring for a child with a ventricular assist device

Abstract

The purpose of this study was to gain a deeper understanding of maternal experiences of caring for their child with a VAD at home as a bridge to transplant. A descriptive, qualitative study was conducted via telephone‐recorded guided interviews. Participants were caring for or had a child with a VAD between 4 and 16 years old. Data collection occurred over a 12‐month period. Using the snowball sampling technique, a purposeful sample of mothers (n = 6) was consented and completed the interview. The data were analyzed using an iterative process of thematic analysis. Five themes emerged: physical modifications, the loss of independence, the emotional rollercoaster, support from others, and transitions on and off the device. We introduced new evidence about sleep, contraception, and heart transplantation, and how VAD therapy impacts childhood development. The mean duration of VAD support was 263 ± 170 days. Five children had heart transplants by the time of interview. To the best of our knowledge, this is the first qualitative study in the US that explores maternal experiences of caring for a child who is living at home with a VAD. VAD therapy is a novel approach to managing advanced heart failure among children and presents unique challenges when caring for them at home. Results provide insight into the education, physical environment, and support needed by parents.

Psychosocial outcomes in pediatric patients with ventricular assist devices and their families: A systematic review

“…The majority of studies established inclusion criteria and consistent selection procedures (n = 12; 75%), [20][21][22][23][24][25][26][27][28][29][30][31] defined the study population, including time period and geographical location of recruitment (n = 11; 69%), 20,21,[23][24][25][26][27][28][29][30][31] and utilized defined outcomes with validated measures (n = 11; 69%). 20,21,23,24,26,27,29,[31][32][33][34] Ten studies (63%) reported a participation rate of greater than 50%, [20][21][22][23][24][25][26][27]29,31 though the remaining six studies did not report participation or attrition results. Notably, few studies justified sample size or utilized effect sizes (n = 4; 25%), 21,29,30,…”

“…Notably, few studies justified sample size or utilized effect sizes (n = 4; 25%), 21,29,30,35 and few statistically considered potential confounding variables in analyses (n = 4; 25%), 21,23,26,29 though six studies utilized qualitative data and thematic analyses, and thus statistical assessment of confounding variables was rated NA. 22,25,28,30,33,35 Based on the results of this quality assessment, 50% of included studies were rated as "good" quality (n = 8) 20,21,23,24,26,27,29,31 and 50% of included studies were rated as "fair" quality (n = 8). 22,25,28,30,[32][33][34][35] No studies were excluded from the current literature reviewed based on the quality assessment.…”

“…22,25,28,30,33,35 Based on the results of this quality assessment, 50% of included studies were rated as "good" quality (n = 8) 20,21,23,24,26,27,29,31 and 50% of included studies were rated as "fair" quality (n = 8). 22,25,28,30,[32][33][34][35] No studies were excluded from the current literature reviewed based on the quality assessment.…”

“…All studies consistently demonstrated that VAD implantation was associated with feelings of fear and an increased sense of responsibility among caregivers, as assessed via qualitative interviews and questionnaires. 22,25,28,35 While it is the goal of many VAD centers to discharge patients to their home, parents qualitatively reported that discharge from the hospital was associated with increased care demands on the parent, heightened fear, sleep deprivation, and increased concern over their ability to adequately care for other children within the family. 35 Notably, significant parental concern surrounding discharge remained present even among caregivers who appropriately demonstrated their ability to independently care for their child on VAD support while in the hospital.…”

“…35 Three studies highlighted the experience of mothers specifically as primary caregivers for their children after VAD implantation. 22,34,35 Among a sample of six mothers, all mothers qualitatively reported reduced independence for themselves and increased responsibility for providing around-the-clock supervision for their child with a VAD. 22 Mothers also reported adjusting their career and household roles, with some mothers resigning from employment to be their child's primary caregiver.…”