Competence, Compassion, and Care of the Self: Family Caregiving Needs and Concerns in Heart Failure.

BACKGROUND: Family caregivers are essential to the well-being of patients with chronic heart failure (HF) because they provide care in managing complex medication regimens, dietary sodium restrictions, and symptoms. OBJECTIVE: The purpose of this qualitative study was to gain a deeper understanding of the HF caregiving experience and describe the needs and concerns expressed by caregivers. METHODS: Qualitative descriptive methodology was conducted using data from responses to open-ended questions asked as part of a larger longitudinal study. The sample was 63 patients with HF and 63 family caregivers. RESULTS: Using basic content analysis, the 3 main themes of needs and concerns that emerged were competence concerns, compassion maintenance, and care of the self. Subthemes of competence concerns were doing things right, making a serious mistake, and uncertainty. CONCLUSIONS: Family caregivers of patients with HF had many needs and concerns about their competence in performing tasks, their compassion, and caring for themselves. Data can be used to design testable interventions to improve the HF caregiving experience for patients and caregivers.

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.

Modification of self-concept in patients with a left-ventricular assist device: an initial exploration.

AIMS AND OBJECTIVES: To explore how patients with left-ventricular assist devices (LVAD) meet the health-deviation requisite of modifying self-concept to accept this form of treatment and restore normalcy. BACKGROUND: LVAD are becoming a standard option to improve the quality of life for patients with advanced heart failure. Past research focused on technology issues and survival rates, but limited research has addressed the effect of LVADs on patients' perceptions of self. Orem's theory of self-care provides a framework to investigate how patients manage threats to self-concept to safely live with such a device. DESIGN: Hermeneutic phenomenology based on van Manen's method. METHOD: Data were collected using semi-structured interviews. Data saturation was achieved with nine participants (seven men; two women), 31-70 years of age who lived with a LVAD at home for at least three months. Thematic analysis was ongoing, and final themes were consensually validated. RESULTS: Two themes constructed from the data were consistent with the requisite of modifying self-concept. First, Having a LVAD means living. Participants described they 'feel alive again', and they 'had the rest of [their] lives that they didn't have before'. The second theme: A desire to be 'normal' in public, arose from participants descriptions of how the LVAD brought unwanted attention to them and that their appearance was 'shocking' to others. CONCLUSION: Participants accepted the LVAD as necessary to live making it easier for them to modify their self-concept and accept the changes to their bodies and daily lives. Attaining a sense of normalcy was more difficult in public and required additional lifestyle modifications. RELEVANCE TO CLINICAL PRACTICE: Findings advance self-care knowledge in LVAD management and can heighten nurses' awareness about self-concept as a vital component for maintenance of health and well-being.

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.

From insiders' perspectives: adjusting to caregiving for patients with left ventricular assist devices.

CONTEXT: Caregivers for patients with a long-term implantable left ventricular assist device have a very important role in helping patients maintain their health and well-being and attain an improved quality of life. Although the caregiving tasks, burdens, and challenges of family caregivers have been described in the literature, we know little about how caregivers adjust to or accommodate the new role in their lives. OBJECTIVE: To explore and describe the lifestyle adjustments of caregivers for adults living with a left ventricular assist device as a bridge to heart transplant or destination therapy. DESIGN: A hermeneutic phenomenology was used as a guide for interviews and analysis of the data. PARTICIPANTS: A purposive convenience sample of 5 women, aged 39 to 71 years, who had served as caregivers of a left ventricular assist device patient for at least 3 months. SETTING: Recruitment and data collection (interviews) were conducted in an outpatient clinic for the mechanical circulatory support program of a large academic medical center in the Midwest. RESULTS: Three main themes (caregiving: a "24/7" responsibility, coping strategies, and satisfaction) and 13 subthemes emerged from the data. CONCLUSIONS: Lifestyle adjustments with caregiving may become easier over time, and with effective use of coping strategies, caregivers accept their new caregiving role as part of life.

Lifestyle adjustments of adults with long-term implantable left ventricular assist devices: a phenomenologic inquiry.

OBJECTIVE: To explore and describe the lifestyle adjustments made by adult recipients of a long-term implantable left ventricular assist device (LVAD). METHODS: A phenomenologic inquiry was used to uncover the lifestyle adjustments of 7 men and 2 women, ages 31 to 70 years, who had an LVAD for more than 3 months after hospital discharge. RESULTS: An overarching theme, "adjustment takes time," represents the lifestyle adjustments of the study participants. Early adjustment was highlighted by participants' concerns with physical, psychologic, and environmental aspects, whereas late adjustment was highlighted by behaviors associated with acceptance of the LVAD as an integral component of their bodies and lives. CONCLUSION: This study provides insight into the patient's perspective regarding the challenges faced in living with an LVAD. The findings inform health care providers in the acute and critical care settings in assisting patients to positively adjust with the lifestyle imposed by an LVAD.