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

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.

Overcoming alterations in body image imposed by the left ventricular assist device: a case report.

Little is known about clothing issues among patients with implantable left ventricular assist devices (LVADs). This article describes the experience of a woman who had challenges in adapting to an altered body image imposed by the external components of the LVAD system. The woman discusses her problems about clothes that fit her personal style and shares her strategies and recommendations in overcoming the problem. Her description of how she approached and resolved the problem is situated within the Apparel Body Construct Model. In this context, appropriate selection of apparrel is crucial not only to preserving the integrity and function of the LVAD system but also to the recipient's satisfaction with her body image. The information presented is a catalyst for knowledge development and heightening health care providers' awareness of patients' perception of body image, which is vital to adapting to an LVAD as a component of the recipient's body and life.

Sex and intimacy among patients with implantable left-ventricular assist devices.

BACKGROUND AND RESEARCH OBJECTIVE: Left-ventricular assist devices (LVADs) sustain and improve the quality of life of people living with an advanced stage of heart failure. Past research focused on the development and advancement of LVAD technology, complications, and survival rates. Limited research addressed the psychosocial aspects of living with an LVAD, yet research related to sexual functioning and intimacy is lacking. The purpose of this study was to explore and describe sex and intimacy among adults living with an LVAD. PARTICIPANTS AND METHODS: We used an interpretive phenomenological study to explore the experiences of adults living with a long-term implantable LVAD, including the effect of the LVAD on their intimate and sexual functioning. Semistructured interviews were conducted with 7 men and 2 women, 31 to 70 years of age, who had lived with the LVAD at home for at least 3 months. Interviews were audiorecorded and transcribed. The wholistic and selective approach by van Manen (Researching Lived Experience: Human Science for an Action Sensitive Pedagogy. Albany, NY: SUNY Press; 1990) guided the analysis and interpretation of the transcribed interviews. Data were organized and coded into words and phrases using qualitative software. RESULTS AND CONCLUSION: Three themes emerged from the data: (a) improved sexual relations with LVAD, (b) sexual adjustment, and (c) nonsexual intimacy. The themes identified were consistent with the concept of normalcy from the theory of self-care. Participants reported that as the LVAD improved their overall health, their sexual functioning also improved. Participants also reported an increased sense of connectedness and intimacy with their partners even in the absence of sexual intercourse. Participants discussed ways in which they continued to develop intimate relationships even in the presence of limitations in structural and functional integrity. The knowledge derived from this study can be used as a guide for healthcare providers in counseling LVAD recipients on psychosocial and sexual health essential for achieving an optimum quality of life.