Theory of Pivoting Uncertainties: Advance Care Planning Among Individuals Living With Mechanical Circulatory Support.

BACKGROUND: Individuals living with mechanical circulatory support (MCS) devices are confronted with risks for catastrophic outcomes such as stroke and systemic infection. Considering these complexities, ongoing advance care planning (ACP) is important for shared decision making. OBJECTIVE: The purpose of this study was to describe how experiences of the MCS trajectory informed decision making about ACP. METHODS: All aspects of the research were guided by constructivist grounded theory. Focused conversations were conducted with a semistructured interview guide. RESULTS: A total of 24 community-dwelling patients living with MCS were interviewed (33% female; mean age, 60.6 years; 50% White). Participants were implanted with MCS (average duration, 29.8 months; bridge to transplant, 58%). Reflected in the narratives were tensions between initial expectations of living with the device in contrast with the realities that emerged over time. A crucial finding was that ACP decision making pivoted around the growing awareness of uncertainties in the MCS trajectory. Yet, clinicians were perceived to be silent in initiating ACP, and their reticence was understood as a sign of encouragement to hold on to hope for a heart transplant. The complex and dynamic decision-making processes around ACP were organized into the theory of pivoting uncertainties. CONCLUSIONS: In this sample, patients were ready to share their concerns about the uncertainties of living with MCS and waited for MCS clinicians to initiate ACP. The theory of pivoting uncertainties is useful for elucidating the ebb and flow of ACP and lending clinicians' guidance for opportunities to initiate these sensitive conversations.

"It's not something that's really been brought up": Opportunities and challenges for ongoing advance care planning discussions among individuals living with mechanical circulatory support.

BACKGROUND: People living with mechanical circulatory support (MCS) are at risk for catastrophic complications that require advance care planning (ACP) as part of the preimplantation work up. Palliative care consultants are a mandatory and essential component of the MCS team tasked to enhance conversations. However, in reality, there is often a serious deficiency of ACP communication after the initial implant counseling. A better understanding of opportunities and challenges in ACP can mobilize intensive care unit and step-down nurses to bridge this gap in crucial communication. OBJECTIVES: To identify and describe MCS individuals' perceptions of opportunities and challenges for ongoing ACP communication. METHODS: A constructivist grounded theory study was conducted with 24 MCS individuals from 2 medical centers in Southern California. Semi-structured interviews were audio recorded, transcribed, and reviewed for accuracy. The data were systematically analyzed through 3 rounds of coding. RESULTS: MCS clinicians, supportive others, and peers with MCS were identified as stakeholders in ongoing communication. Four categories of opportunities and challenges for ongoing ACP were synthesized from the narratives: identifying context and timing, sharing information, understanding of ACP, and assessing satisfaction. All participants reported a preference for MCS clinicians, including nurses, to initiate ACP conversations. CONCLUSION: Understanding opportunities and challenges is key to facilitating ongoing ACP discussions among MCS patients. MCS-trained nurses are positioned to address the dearth of ongoing ACP by facilitating these sensitive discussions. The personal accounts of this sample serve to guide future research and structure training to prepare MCS clinicians for primary palliative care.

Surgical decision-making among patients with uncontrolled epilepsy: "Making important decisions about my brain, which I happen to love".

OBJECTIVE: To explore decision-making from patients' perceptions of risks and benefits of epilepsy surgery for refractory focal seizures. METHODS: Using constructivist grounded theory, in-person interviews were conducted with 35 adults with refractory focal epilepsy who were undergoing a pre-surgical evaluation or who had consented for surgery. RESULTS: For this sample of participants decision-making about surgery was complex, centering on the meaning of illness for the self and the impact of epilepsy and its treatment for significant others. Two interrelated categories crystalized from our data: the unique context of brain surgery and how the decisional counterweights of risks and benefits were considered. DISCUSSION: Exploring components of decision-making from the patients' perspective afforded an opportunity to describe thought processes intrinsic to how people with drug-resistant epilepsy weighed their treatment options. Tensions were evident in how decisions were made. We use the analogy of an imaginary tightrope-walker to create a visual image of what patients face as they consider the illness experience (past and present), their hopes for the future, and the simultaneous uncertainty centered around balancing the counterweights of treatment risks and benefits.

Surgical Decision-Making for Temporal Lobe Epilepsy: Patient Experiences of the Informed Consent Process.

Background: Surgical resection is frequently the recommended treatment for drug-resistant temporal lobe epilepsy (TLE), yet many factors play a role in patients' perceptions of brain surgery that ultimately impact decision-making. The purpose of the current study was to explore how people with epilepsy, in their own words, experienced the overall process of consenting to surgery for drug-resistant TLE. Methods and Materials: Data was drawn from in-person, semi-structured interviews of 19 adults with drug-resistant TLE eligible to undergo epilepsy surgery. A systematic thematic analysis was performed to code, sort and compare participant responses. The mean age of these 12 (63%) women and seven (37%) men was 37.6 years (18-68 years), with average duration of epilepsy of 13 years (2-30 years). Results: Meeting the neurosurgeon and consenting to surgery represented an important treatment milestone across a prolonged treatment trajectory. Four themes were identified: (1) Understanding the language of risk; (2) Overcoming risk; (3) Family-centered, shared decision-making, and (4) Building decisional-confidence. Conclusion: Despite living with the restrictions of chronic uncontrolled seizures, considering an elective brain procedure raised unique and complex questions. Personal beliefs and expectations related to treatment outcomes influenced how the consent process was ultimately experienced. Decisions to pursue surgery had frequently been made ahead of meeting the surgeon, with many describing the act of signing as personally empowering. Overall, satisfaction was expressed with the information provided during the surgical visit, despite later inaccurate recall of the facts. These findings support the resultant recommendation that the practice of informed consent be conceptualized as a systematic, structured interdisciplinary process which occurs over time and encompasses three stages: preparation, signing and follow-up after signing.

Reciprocal burden: Adults with drug-resistant epilepsy reflect upon informal caregiver support.

PURPOSE: To explore how a sample of people with uncontrolled seizures describe their experiences of receiving informal supportive care. METHODS: Using constructivist grounded theory, in-person, semi-structured interviews were conducted in 35 adults with drug-resistant epilepsy. These 20 (57%) women and 15 (43%) men were aged 18-68 years (mean= 35.6 years), with a range of verbal comprehension scores. The majority, 28 (80%) lived in nuclear family settings. RESULTS: Unpredictable seizures disrupted personal autonomy and generated unique challenges for everyday life. While supportive care was deemed necessary to survival, subjective reflections around the implications of care-receiving and caregiving, were ultimately experienced as mutually burdensome. Four dynamic and interactive dimensions revealed a mirrored, interactive perspective of what it meant to be a care-recipient: assuming responsibility; protecting and supervising; acknowledging reliance and setting boundaries. Care-recipience was not one-sided, but included actively hiding personal struggles as a way to shield the caregiver from the emotional and physical demands of caregiving. Relationship dynamics between caregivers and care-recipients played a major role in treatment decision-making. A clinically useful Theory of Reciprocal Burden resulted from our study. CONCLUSIONS: This study adds an explanatory dimension to the concept of illness burden from the perspective of care-recipients. Relationship dynamics play a key role in patient-centered epilepsy care, with clinical implications for guiding supportive caregiving, fostering independence and promoting self-management strategies.

Pediatric and adult epileptologist perspectives and experiences of pediatric to adult epilepsy care transition: "Saying goodbye and opening a door."

We aimed to describe perspectives of transition and transfer of adolescents and young adults with childhood-onset epilepsy from pediatric to adult care from the viewpoints of both pediatric and adult epileptologists. Telephone semi-structured interviews with pediatric (n = 15) and adult (n = 11) epileptologists at leading U.S. epilepsy centers were used to collect data about the transition process. Interviews were audio-recorded, transcribed, systematically coded using thematic analysis by two independent researchers, and subsequently checked for agreement during regular meetings. Participants were on average 46 years old (SD = 7.4), 50% male, 91% Non-Hispanic and 85% Caucasian; all had completed a formal epilepsy or clinical neurophysiology fellowship (mean = 11 years since terminal training) and were employed at a comprehensive epilepsy center. Three interrelated themes regarding epileptologists' perspectives of epilepsy transition and transfer of care were evident: (1) the process is unnatural and disruptive, (2) clinicians make the best of challenges, and (3) the epilepsy transition process includes a spectrum of broad needs some of which are unique to epilepsy care while others are common to other chronic diseases. Despite challenges, epilepsy clinicians spontaneously expressed stress, empathy, and commitment to providing the best possible care.

"It Just Hit Me Like a Ton of Bricks": Improving the Patient Experience of Receiving a Breast Cancer Diagnosis at an Older Age.

The purpose of the current study was to describe the experiences of older women receiving a diagnosis of early-stage breast cancer. Thematic analysis informed by techniques from constructivist grounded theory was used to analyze interviews with 54 women aged ≥65 years an average of 19.6 months after diagnosis. Two themes were identified: The Overwhelming Shock of Receiving a Diagnosis and Contextualizing the Diagnosis in Relation to Age. Results suggest these participants were deeply shocked by a diagnosis that clinicians may view as highly treatable. Age-related factors impacting how the bad news was received include misunderstanding risk factors, the impact of comorbidities, concurrent life events, and evolving perceptions of cancer at her life stage. To establish a solid foundation for age-appropriate communication when giving bad news, these participants help clinicians acknowledge what women may be thinking. Potential clinician responses to the variety of concerns are presented. [Research in Gerontological Nursing, 14(2), 79-89.].

The patient experience of hemodialysis vascular access decision-making.

BACKGROUND: To describe vascular access (VA)-related decision-making from the patient perspective, in patients who have already chosen hemodialysis as their renal replacement modality, and identify areas where physicians can improve this experience. METHODS: In-person, semi-structured interviews with 15 patients with end-stage kidney disease were systematically analyzed by two independent researchers using thematic analysis. Interviews were conducted until systematic analysis revealed no new themes. RESULTS: Patients had mean age 57 (range 22-85), with seven males and diverse racial/ethnic/marital status. All (15/15) patients viewed VA as "intertwined and interrelated" with dialysis, prioritized the dialysis, described the VA merely as the "hookup" to life-preserving dialysis and gave it minimal consideration. Three themes were identified: consolidation of dialysis and VA, reliance on supportive advisors and communication with physicians. Although 14/15 patients described processes common to medical decision-making, including information seeking, learning from the experiences of others, and weighing risks and benefits, they did not apply these processes specifically to VA. While all participants took ownership of the VA decision, they lacked clear understanding about the different types of VA and their consequences. Most patients (14/15) depended on family and friends for reinforcement, motivation and advice. Patients all described physician characteristics they associated with trustworthiness, the most common being listening and explaining, demonstrating empathy and making an effort to meet the patient's individual needs. Perceived arrogance, unavailability and lack of expertise represented untrustworthiness. The majority (14/15) accepted VA recommendations from physicians they found trustworthy and authoritative. CONCLUSIONS: The study participants were minimally engaged in VA decision-making. Educational aids and shared decision-making tools are needed to empower patients to make better-informed, self-efficacious VA decisions.

Perceptions of illness severity in adults with drug-resistant temporal lobe epilepsy.

OBJECTIVE: The purpose of this study was to explore how subjective perceptions of illness severity were described by a sample of participants with drug-resistant epilepsy (DRE) who were considering surgery. METHODS: A qualitative methodology, constructivist grounded theory, guided all aspects of the study. Data were collected via 51 semi-structured interviews with 35 adults in our multiethnic sample. At interview, the 20 women (57%) and 15 men (43%) ranged in age from 18 to 68 years (mean = 35.6 years) and had lived with epilepsy for an average of 15.4 y (range = 2-44 years). RESULTS: A grounded theory with four interrelated categories was developed to reflect the process by which participants arrived at an explanation of illness severity. Illness severity for participants evolved as participants reflected upon the burdensome impact of uncontrolled seizures on self and others. Epilepsy, when compared with other chronic conditions, was described as less serious, and participants imagined that other peoples' seizures were comparatively worse than their own. Illness severity was not uppermost in participants' minds but emerged as a concept that was both relative and linked to social burden. Perceptions of overall disease severity expanded upon determinants of seizure severity to offer a more complete explanation of what patients themselves did about longstanding, uncontrolled epilepsy. CONCLUSIONS: Perceptions of illness severity played a vital role in treatment decision-making with the potential to impact the illness trajectory. How to measure components of illness severity represents a new challenge for outcomes research in DRE.

Aromatase inhibitors: The unexpected breast cancer treatment.

OBJECTIVE: Suboptimal adherence with endocrine treatment for breast cancer is influenced by a number of factors but remains poorly understood. We sought to describe the prior knowledge about and expectations of breast cancer treatments among older women retrospecting on their diagnosis and treatment. METHODS: Thematic analysis was used to systematically analyze data obtained with face-to-face, open-ended interviews conducted with 54 women who had filled at least one prescription for an aromatase inhibitor. The average age was 71.9 (65-93) years at diagnosis. RESULTS: Three salient themes were described: the sources of information on which preknowledge and expectations surrounding treatment were founded, and two phases of treatment, primary (surgery, chemotherapy and radiation therapy) and anti-hormonal. The main source of information was from family and friends who had been treated for cancer. These peers reported both positive and negative experiences and in many cases contributed to the women having some degree of misinformation. A foundational knowledge of primary treatments was evident (necessity, duration, intensity, side-effects) and that receiving one or more treatments was needed. Compared to primary treatments, anti-hormonal treatment (AHT) was unexpected, the women knew less about it, and felt comparatively under-prepared for this treatment. CONCLUSIONS: The transition from primary treatments to adjuvant AHT therapy with receiving a prescription for an aromatase inhibitor caught many participants off guard. Our findings elucidate areas to enhance clinical practice, expand the research agenda to more thoroughly explore AHT information and design of an age-appropriate supportive intervention to improve continuation with AHT.

A qualitative comparison of how older breast cancer survivors process treatment information regarding endocrine therapy.

BACKGROUND: It remains unclear how information about aromatase inhibitors (AI) impacts women's decision-making about persistence with endocrine therapy. PURPOSE: To describe and compare how women treated for primary early stage breast cancer either persisting or not persisting with an AI received, interpreted, and acted upon AI-related information. DESIGN: Thematic analysis was used to sort and compare the data into the most salient themes. PARTICIPANTS: Women (N = 54; 27 persisting, 27 not persisting with an AI) aged 65-93 years took part in qualitative interviews. RESULTS: Women in both subgroups described information similarly in terms of its value, volume, type, and source. Aspects of AI-related information that either differed between the subgroups or were misunderstood by one or both subgroups included: (1) knowledge of AI or tamoxifen prior to cancer diagnosis, (2) use of online resources, (3) misconceptions about estrogen, hormone replacement therapies and AI-related symptoms, and (4) risk perception and the meaning and use of recurrence statistics such as Oncotype DX. CONCLUSIONS: Persisters and nonpersisters were similar in their desire for more information about potential side effects and symptom management at AI prescription and subsequent appointments. Differences included how information was obtained and interpreted. Interactive discussion questions are shared that can incorporate these findings into clinical settings.

"Improving to where?": treatment-related health risks and perceptions of the future among adolescents and young adults after hematopoietic cell transplantation.

PURPOSE: Despite the prevalence of hematological malignancies in early adulthood, very little is known about hematopoietic cell transplantation among adolescents and young adults, and even less is known about their transition from the completion of therapy to early survivorship. In this qualitative study, we investigated the impact of the cancer experience on sense of life potential and perception of the future from the perspectives of adolescents and young adults after hematopoietic cell transplantation. METHODS: In-depth interviews were conducted with adolescents and young adults who underwent allogeneic or autologous hematopoietic cell transplantation between the ages of 15-29 years and were 6-60 months post-treatment. Interview transcripts were systematically coded based on constructivist grounded theory. RESULTS: Eighteen adolescents and young adults participated and described how they came to understand the lifelong, chronic nature of cancer survivorship. "Improving to where?" was a question raised in the post-treatment period that reflected participants' confusion about the goals of treatment and expectations for survivorship. Participants reported bracing themselves for "something bad" to deal with the uncertainty of medical and psychosocial effects of treatment. They struggled to move forward with their lives given their substantial health risks and found it necessary to "roll with the punches" in order to adjust to this new reality. CONCLUSIONS: Adolescents and young adults who undergo hematopoietic cell transplantation are at significant risk for long-term and late effects in survivorship. Age-appropriate interventions are needed to support these survivors as they manage their fears about the future while enhancing health and well-being.

Coming of Age With Cancer: Physical, Social, and Financial Barriers to Independence Among Emerging Adult Survivors

PURPOSE: To explore the transition to self-care among a sample of emerging adult cancer survivors after hematopoietic cell transplantation (HCT). 
. PARTICIPANTS & SETTING: 18 HCT survivors who were aged 18-29 years at the time of HCT for a primary hematologic malignancy and were 8-60 months post-HCT participated in the study. The study took place in the hematology outpatient setting at City of Hope National Medical Center.
. METHODOLOGIC APPROACH: The authors conducted in-depth semistructured interviews and analyzed interview transcripts using grounded theory methodology.
. FINDINGS: Health-related setbacks following HCT disrupted not only participants' journey toward self-care, but also their overarching developmental trajectory toward adulthood. Physically, participants struggled with lack of personal space around caregivers, but felt unready to live on their own. Socially, they relied on multiple caregivers to avoid relying too much on any one person. Financially, participants worried about prolonged dependence and increased needs in the future.
. IMPLICATIONS FOR NURSING: Nurses can support the transition to self-care among emerging adults after HCT by recognizing the broader developmental impact of their cancer experience.

Perceptions of Support Groups Among Older Breast Cancer Survivors: "I've Heard of Them, but I've Never Felt the Need to Go".

BACKGROUND: Cancer survivors transitioning from active treatment to posttreatment may lack critical support and information about their posttreatment care. Support groups have the potential to address this gap. OBJECTIVE: The aim of this study was to describe how breast cancer survivors 65 years and older perceived professionally led, in-person support groups. METHODS: Individual interviews with 54 women were analyzed using grounded theory informed by constructivism. RESULTS: Strong negative assumptions about cancer support groups were described. Tension existed between two opposing categories: participants' preconceptions of support groups and characterizations of their members and the women's perceptions of their own informational and emotional needs. Participants also described what sources of support they used in lieu of professionally led support groups. CONCLUSIONS: Despite awareness and availability, most participants did not use support groups as a resource during their primary or post-cancer treatment. IMPLICATIONS FOR PRACTICE: Structural changes can benefit existing models of support groups including how and when support needs and services are discussed with survivors and a shift toward the inclusion of practical information.

"From Snail Mode to Rocket Ship Mode": Adolescents and Young Adults' Experiences of Returning to Work and School After Hematopoietic Cell Transplantation.

PURPOSE: Resuming normal activities, such as work and school, is an important dimension of psychosocial recovery in cancer survivorship. Minimal data exist regarding adolescents or young adults' experiences of returning to school or work after cancer. The purpose of this study was to explore the processes of resuming work and school among adolescents and young adults after hematopoietic cell transplantation (HCT). METHODS: In-depth interviews were conducted with 18 adolescents and young adults, who were 15-29 years when they underwent HCT and 6-60 months post-transplant at study enrollment. Interview transcripts were systematically analyzed using Grounded Theory methodology. RESULTS: Participants described the context in which they attempted to return to work or school, specific challenges they faced, and strategies they developed in these environments. Feeling left behind from their peers and their pre-diagnosis selves, participants described "rushing" back to school and work impulsively, taking on too much too quickly while facing overwhelming physical and cognitive demands. Factors motivating this sense of urgency as well as barriers to successful and sustainable reentry in these settings are also addressed. CONCLUSION: Findings are discussed in the context of important opportunities for clinical management, age-appropriate interventions, and implications for future research. A better understanding of psychosocial late effects, specifically related to school and work trajectories after cancer, is critical to survivorship care for adolescent and young adult cancer survivors.

"Winging It": How Older Breast Cancer Survivors Persist With Aromatase Inhibitor Treatment.

PURPOSE: Aromatase inhibitors (AIs) are an important and effective hormonal adjuvant treatment for early-stage breast cancer. Up to 50% of women stop AIs prematurely, missing a valuable therapeutic intervention. PATIENTS AND METHODS: We used grounded theory methodology to conduct in-depth, semistructured interviews and analyze data among patients with breast cancer diagnosed at age 65 years or older who were receiving an AI. The goal of the interviews was to understand decision making regarding persisting with AIs. Interview transcripts were systematically analyzed to identify emergent categories and relationships. RESULTS: Interviews were conducted with 27 women. After completion of primary treatment, women in our sample found themselves "winging it" as they faced substantial struggles with infrequent support during this new phase of the cancer trajectory. Self-management of AI adverse effects occurred in the contexts of older age and early survivorship. "Bearing it" emerged as another important management process regarding the impact of AIs on quality of everyday life. The complex decision to persist with the AI involved weighing the possibility of a cancer-free future against the burden of adverse effects. Women relied on informal networks for support, rather than oncology providers, highlighting the need for practical self-management strategies. The notion of a tipping point in persistence revealed their susceptibility to early discontinuation. CONCLUSION: This study provides insight into potential decisional pathways leading to early discontinuation of AIs among older women with breast cancer. Better support is needed for these women.

"It was five years of hell": Parental experiences of navigating and processing the slow and arduous time to pediatric resective epilepsy surgery.

OBJECTIVE: Children with medically refractory epilepsy stand to benefit from surgery and live a life free of seizures. However, a large proportion of potentially eligible children do not receive a timely referral for a surgical evaluation. We aimed to describe experiences during the arduous time before the referral and the parent-reported facilitators that helped them move forward through this slow time. METHODS: Individual semi-structured interviews with 37 parents of children who had previously undergone epilepsy surgery at UCLA (2006-2011) were recorded, transcribed, and systematically analyzed by two independent coders using thematic analysis. Clinical data were extracted from medical records. RESULTS: Parents, 41.3years of age on average, were mostly Caucasian, English-speaking, mothers, married, and employed. The mean age at surgery for children was 8.2years with a mean time from epilepsy onset to surgery of 5.4years. Parental decision-making was facilitated when parents eventually received a presurgical referral and navigated to a multidisciplinary team that they trusted to care for their child with medically refractory epilepsy. Four themes described the experiences that parents used to feel a sense of moving forward. The first theme, processing, involved working through feelings and was mostly done alone. The second theme, navigating the complex unknowns of the health-care system, was more active and purposeful. Processing co-occurred with navigating in a fluid intersection, the third theme, which was evidenced by deliberate actions. The fourth theme, facilitators, explained helpful ways of processing and navigating; parents utilized these mechanisms to turn vulnerable times following the distress of their child's diagnosis into an experience of productivity. SIGNIFICANCE: To limit parental distress and remediate the slow and arduous journey to multidisciplinary care at a comprehensive epilepsy center for a surgical evaluation, we suggest multi-pronged interventions to modify barriers associated with parents, providers, and health-care systems. Based on the facilitators that moved parents of our sample forward, we provide practical suggestions such as increased peer support, developing the role of patient navigators and communication strategies with parents before, during, and after referral to a comprehensive epilepsy center and presurgical evaluation.

Supportive Care in Older Adults with Cancer: Across the Continuum.

Supportive care is an essential component of anticancer treatment regardless of age or treatment intent. As the number of older adults with cancer increases, and supportive care strategies enable more patients to undergo treatment, greater numbers of older patients will become cancer survivors. These patients may have lingering adverse effects from treatment and will need continued supportive care interventions. Older adults with cancer benefit from geriatric assessment (GA)-guided supportive care interventions. This can occur at any stage across the cancer treatment continuum. As a GA commonly uncovers issues potentially unrelated to anticancer treatment, it could be argued that the assessment is essentially a supportive care strategy. Key aspects of a GA include identification of comorbidities, assessing for polypharmacy, screening for cognitive impairment and delirium, assessing functional status, and screening for psychosocial issues. Treatment-related issues of particular importance in older adults include recognition of increased bone marrow toxicity, management of nausea and vomiting, identification of anemia, and prevention of neurotoxicity. The role of physical therapy and cancer rehabilitation as a supportive care strategy in older adults is important regardless of treatment stage or intent.