Normalcy Among Individuals Living With Long-Term Mechanical Circulatory Support: A Reflexive Thematic Analysis.

Abstract

Aim: To explore descriptions of normalcy among individuals who have lived with mechanical circulatory support for a long time.

Design: Reflexive thematic analysis was used for this qualitative research.

Methods: A parent study, utilising constructivist grounded theory, was conducted to explore the experiences of advance care planning among mechanical circulatory support individuals. Participants spontaneously shared their experiences of normalcy, which was outside the scope of the primary study. Thus, a secondary analysis using reflexive thematic analysis was performed to explore experiences of normalcy among individuals living with mechanical circulatory support for long-term use.

Results: Twelve transcripts were purposively sampled and analysed. Three major themes were derived from the data: acquiescence, adapting to the device and restructuring family roles.

Conclusion: Normalcy continued to evolve years after device implantation because individuals were not prepared to face ongoing psychosocial challenges. Clinicians and researchers must address the complex emotional and social needs related to changes in goal therapy and unanticipated transplant delays. This includes the development of support groups that are aligned with the various stages of the MCS trajectory.

Implications for the profession and/or patient care: Clinicians need to engage patients in conversations about disruptions to their perceived 'normal' lifestyle and how they plan to adapt to complex changes. Future support groups can be organised according to individuals' duration of implantation and goal therapy to reduce social withdrawal. Additionally, clinicians should assess bridge to transplant individuals' attitudes before connecting them with transplanted volunteers. Finally, clinicians can support resilience by recognising and discussing the ongoing work required to adapt to the complex changes throughout the mechanical circulatory support trajectory.

Impact: Perceptions of normalcy among mechanical circulatory support individuals are subject to ongoing change. Findings will inform clinicians of the social, emotional and familial challenges that require ongoing support and resources for long-term mechanical circulatory support individuals.

Reporting method: Reporting adhered to the COREQ checklist.

Patient contribution: Participants contributed to this study by sharing their experiences of normalcy after living with mechanical circulatory support for 2 years or more.