Family caregivers' inside perspectives: Caring for an adult with a left ventricular assist device as a destination therapy

Linda Marcuccilli, Jesus Casida, Tamilynn Bakas, Francis Pagani

Research output: Contribution to journalArticlepeer-review

Abstract

Context-Understanding the experience of caring for an adult with a left-ventricular assist device as a destination therapy (LVAD-DT) remains in its infancy.Objective/Design-A hermeneutic-phenomenological inquiry guided by van Manen's methods was used to explore the LVAD-DT family caregiving experience.Participants/Setting-Seven family caregivers (1 man and 6 women) 50 to 74 years old who cared for an adult with an LVAD-DT in home settings. Recruitment and data collection occurred in an outpatient mechanical circulatory support center in the Midwest.Methods-Data were collected by means of face-to-face interviews using open-ended questions and 1 follow-up interview. Interviews were audio recorded and transcribed verbatim. Thematic analysis consisted of writing, rewriting, and reflecting across participants' data, which produced themes illustrating the experience and meaning of caring for an adult with an LVAD-DT. Themes were consensually validated. Procedures for trustworthiness are described.Results-Five main themes were identified from participants' experiences: (1) advanced heart failure is a life-changing event, (2) self-doubt about LVAD caregiving improves over time, (3) lifestyle adjustments come with time, (4) persistent worry and stress, and (5) caregiving is not a burden-it's a part of life. These main themes were elucidated by 8 subthemes in which participants described a process of adjustment despite persistent worry and stress and eventually accepted caregiving as part of their lives. Future studies are needed to explore caregiver burden, adaptation, and the effects of caregiving outcomes, such as emotional and physical health and overall quality of life.

Original languageEnglish (US)
Pages (from-to)332-340
Number of pages9
JournalProgress in Transplantation
Volume24
Issue number4
DOIs
StatePublished - Dec 1 2014
Externally publishedYes

ASJC Scopus subject areas

  • Transplantation

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