Despite the well-established evidence about catastrophic complications in individuals living with durable mechanical circulatory support, little is known about the decision-making processes in advance care planning for this population. While findings from current studies give insights into clinicians’ attitudes and protocol development to integrate palliative care specialists in advance care planning, these results do not describe the patients’ experiences in managing the uncertain outcomes of living with durable mechanical circulatory support. Therefore, this dissertation research explored the personal experiences of individuals living with mechanical circulatory support to analyze how their complex disease trajectories impact decision-making about advance care planning. Constructivist grounded theory guided all aspects for this dissertation. In-depth interviews, using a semi-structured guide to navigate the conversations, were conducted with 24 individuals who were implanted with durable mechanical circulatory support devices. Systematic analysis of the interview transcripts led to the identification of emergent categories and the development of the Theory of Pivoting Uncertainties, a situation-specific theory. The first paper, a systematic literature review, points to the dearth of ongoing ACP communication and the potential for nurses to provide primary palliative care for the MCS population. Consistent with the findings from the literature review, the paucity of ACP communication continued to be evident within the sample of participants. In the first data-based paper, participants’ perceptions of opportunities for ongoing advance care planning conversations were elucidated in four categories: 1) identifying the optimal context and timing for advance care planning; 2) sharing information with key stakeholders; 3) examining their understanding of advance care planning, and 4) assessing satisfaction with the information that had been received. These four categories were interrelated and occurred simultaneously to present ongoing opportunities for advance care planning across the mechanical circulatory support trajectory. In the second data-based paper on the Theory of Pivoting Uncertainties describes the process of decision-making about advance care planning in the context of living with mechanical circulatory support. Within the core category of complexities in decision-making about advance care planning, there were three dynamic subcategories: 1) impediments; 2) uncertainties; and 3) promoters. Collectively, the subcategories in the Theory of Pivoting Uncertainties gave insight into participants’ patterned responses towards these uncertainties and ultimately decision-making around ACP. These insights into the experiences of the complicated disease trajectories among individuals with mechanical circulatory support evidence their growing awareness of the uncertainties of living. The awareness of uncertain outcomes holds the potential for clinicians to engage individuals in sensitive advance care planning conversations. Additionally, the current sample highlight the need for clinicians, including MCS-trained clinical nurses and MCS coordinators, to initiate ongoing conversations with mechanical circulatory support individuals and their families. By exploring the firsthand experiences of individuals living with mechanic circulatory support, these findings are useful for informing clinical practice, future research, and policy-making around advance care planning.

Drug-resistant epilepsy (DRE) is characterized by fluctuating periods of remission and relapse during which it is easy for the voice of the patient to be overshadowed by a bio-medical focus. Since little is known about perceptions of illness severity in DRE, the purpose of this qualitative dissertation was to explore how a sample of participants perceived their epilepsy and how subjective perceptions of severity shaped the treatment journey. The rationale for the study was influenced by the assumption that the course of disease is impacted by what patients know and believe about the condition. A purposive sample was comprised of 35 participants with DRE of which 16 were undergoing in-patient evaluation for epilepsy surgery and 19 had signed a surgical consent. Constructivist grounded theory was used for data collection and analysis from which four analytic categories were developed: 1) “Epilepsy is an uphill thing”, 2) “It’s just not knowing”, 3) “Waving the white flag” and 4) “Battling with myself”. Our findings revealed that considerations of overall illness severity were arrived at after much inner debate centered around uncertainty, shared suffering and disease burden. Tensions and contradictions were expressed in relation to the impact of unpredictable seizures, yet illness severity was frequently downplayed, and participants found severity was difficult to rate. Pride was taken in coping well, yet acceptance of the epilepsy may also have contributed to a degree of treatment inertia. While epilepsy care felt directionless and life itself was on hold, other medical conditions were thought to be worse than epilepsy. We suggest that severity is a concept that is foundational to shared decision-making in epilepsy, and necessary to the timely execution of therapeutic options. Therefore, study recommendations include the importance of open conversations about illness severity. Nurses specialized in epilepsy care are well positioned to assess and influence patient and family attitudes around severity. A long-term implication includes the development of a practical instrument to assess severity that expands upon existing tools and includes subjective perceptions of illness.

Experiences and perceptions about sexuality of older breast cancer survivors are unspoken, overlooked, neglected and underexplored in clinical settings and the scientific literature. Stereotypes about age and sexuality impede sexual assessment and conversations with these women. Consequently, little is known regarding sexuality and femininity subsequent to the diagnosis of breast cancer from the distinctive knowledge base, worldview and voices of older women. The purpose of this qualitative dissertation was to understand and describe perceptions of sexuality and femininity among women with early stage breast cancer who were 65 years and older at the time of the interview. The rationale for this study was influenced by the assumption that the sexuality of older women is impacted by the diagnosis and treatment of early breast cancer. The purposive sample of 19 participants, all residing in Southern California, participated in personal interviews from August 2015 to January 2018. Qualitative description with a constructivist grounded theory framework for data collection and analysis was used to organize the data into three overarching themes: receiving the diagnosis, experiencing sexuality and describing femininity. Each of these themes was subsequently organized into three subthemes of inner processes, outer processes and moving forward. The findings vividly illuminated this sample of older women’s perspectives on the significance of sexuality and femininity in their lives subsequent to the cancer diagnosis. The preservation of femininity was challenged by the diagnosis and treatment of breast cancer. Additionally, maintaining or re-initiating physical intimacy after treatment required strategizing for engaging in intimate encounters. Knowledge generated by this study reveals the opportunity for health care providers to understand and address the sexuality and femininity needs of older women after the diagnosis of early stage breast cancer. Recommendations for future studies with older breast cancer survivors include the identification of barriers to discussing sexuality among patients and oncology clinicians, development of guidelines for effective communication and improvement of the assessment of sexuality and femininity.

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