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.

"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.

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.

"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.

Reflections of Low-Income, Second-Generation Latinas About Experiences in Depression Therapy.

Depression is higher among second-generation Latinas compared with immigrants, but mental health treatment is stigmatized. Therefore, second-generation Latinas were interviewed after completing an eight-session depression treatment program to gain insight on what they found valuable about their therapy experiences. Constructivist grounded theory guided data collection and analysis which showed that women valued treatment more when they recognized their needs were being met, the therapist was a worthy copilot, and the program's structure had flexibility. Four processes were considered important to their work in therapy: understanding feelings about past events, seeing patterns, accepting self, and changing family patterns but still being "family." Post therapy, women valued their enhanced confidence and a "toolbelt" of techniques they gained for self-treatment. These findings have implications for designing future depression treatment programs that are more likely to be desirable and effective for the growing subgroup of underserved second-generation Latinas in the United States.

"A journey around the world": Parent narratives of the journey to pediatric resective epilepsy surgery and beyond.

OBJECTIVE: Although shorter time to pediatric resective epilepsy surgery is strongly associated with greater disease severity, other nonclinical diagnostic and sociodemographic factors also play a role. We aimed to examine parent-reported barriers to timely receipt of pediatric epilepsy surgery. METHODS: We conducted 37 interviews of parents of children who previously had resective epilepsy surgery at University of California Los Angeles (UCLA; 2006-2011). Interviews were audio-recorded, transcribed, and systematically coded using thematic analysis by two independent coders, and subsequently checked for agreement. Clinical data, including "time to surgery" (age of epilepsy onset to surgery) were abstracted from medical records. RESULTS: The mean time to surgery was 5.3 years (standard deviation [SD] 3.8); surgery types included 32% hemispherectomy, 43% lobar/focal, and 24% multilobar. At surgery, parents were on average 38.4 years (SD 6.6) and children were on average 8.2 years (SD 4.7). The more arduous and longer aspect of the journey to surgery was perceived by parents to be experienced prior to presurgical referral. The time from second antiepileptic drug failure to presurgical referral was ≥ 1 year in 64% of children. Thematic analysis revealed four themes (with subthemes) along the journey to surgery and beyond: (1) recognition--"something is wrong" (unfamiliarity with epilepsy, identification of medical emergency); (2) searching and finding--"a circuitous journey" (information seeking, finding the right doctors, multiple medications, insurance obstacles, parental stress); (3) surgery is a viable option--"the right spot" (surgery as last resort, surgery as best option, hoping for candidacy); and (4) life now--"we took the steps we needed to" (a new life, giving back). SIGNIFICANCE: Multipronged interventions targeting parent-, provider-, and system-based barriers should focus on the critical presurgical referral period; such interventions are needed to remediate delays and improve access to subspecialty care for children with medically refractory epilepsy and potentially eligible for surgery.

Perceptions of epilepsy surgery: a systematic review and an explanatory model of decision-making.

BACKGROUND: Clear evidence supports the benefits of surgery over medical therapy for patients with refractory focal epilepsy. Surgical procedures meet the needs of fewer than 2% of those eligible. Referral to a tertiary epilepsy center early in the course of disease is recommended; however, patients live with disabling and life-threatening seizures for an average of 22years before considering surgical treatment. Reasons for this treatment gap are unclear. PURPOSE: A critical analysis of the literature addressing perceptions of surgical treatment for epilepsy is placed in the context of a brief history and current treatment guidelines. Common conceptual themes shaping perceptions of epilepsy surgery are identified. DATA SOURCES: Data sources used for this study were PubMed-MEDLINE and PsycINFO from 2003 to December 2013; hand searches of reference lists. DATA SYNTHESIS: Nine papers that addressed patient perceptions of surgery for epilepsy and three papers addressing physician attitudes were reviewed. Treatment misperceptions held by both patients and physicians lead to undertreatment and serious health consequences. Fear of surgery, ignorance of treatment options, and tolerance of symptoms emerge as a triad of responses central to weighing treatment risks and benefits and, ultimately, to influencing treatment decision-making. Our novel explanatory framework serves to illustrate and explain relationships among contributory factors. LIMITATION: Comparisons across studies are limited by the heterogeneity of study populations and by the fact that no instrument has been developed to consistently measure disability in refractory focal epilepsy. CONCLUSION: Exploring the components of decision-making for the management of refractory focal epilepsy from the patient's perspective presents a new angle on a serious contemporary challenge in epilepsy care and may lead to explanation as to why there is reluctance to embrace a safe and effective treatment.

Relationship management strategies for daughters in conflicted relationships with their ageing mothers.

AIMS: To study relationship management strategies of daughters in conflicted relationships with their mothers and how they promoted or prevented elder abuse. BACKGROUND: Daughters have enduring, unique relationships with their mothers that often carry over into caregiving. Pre-caregiving relationship quality is related to many caregiving outcomes, although it is unclear how. DESIGN: Qualitative study. METHODS: Grounded theory design, informed by feminism, with telephone interviews conducted between January 2013-July 2013. The sample (N = 13) was recruited through an online recruitment strategy, with advertisements posted on relevant websites asking 'Are you in an abusive relationship with your ageing mother?' RESULTS/FINDINGS: Daughters used coping strategies and self-protective strategies aimed at decreasing their exposure to aggression and emotional distress when interacting with their ageing mothers. Daughters also used spiteful aggression out of the desire for revenge. CONCLUSION: Although the daughters' strategies served their personal needs, they jeopardized the mothers' needs by creating an environment where neglect could occur. Daughters also readily and intentionally used aggression against their mothers. These were strategies daughters have found useful. These strategies may be potential areas for designing interventions to promote healthy family relationships and decrease the occurrence of elder abuse and neglect.

Adult Daughters' Descriptions of Their Mother-Daughter Relationship in the Context of Chronic Conflict.

The purpose of this article is to describe, from the perspective of the adult daughter, the mother-daughter relationship in the context of chronic conflict. Grounded theory methodology was used. An online recruitment strategy was used to identify a sample of adult daughters (N = 13) who self-identified as having an abusive relationship with their aging mother. Data collection was completed through semi-structured telephone interviews. Daughters framed their relationship around their perceptions of past childhood injustices. These injustices invoked strong negative emotions. Daughters had equally strong motivations for sustaining the relationship, driven by desire to reconcile their negative experience through seeking validation and futile-hoping as well as a sense of obligation to do due diligence. Together these factors created an environment of inevitable confrontation and a relationship defined by chronic conflict. Findings from the study provide theoretical insights to the conceptualization of aggression, power relationships, and the development of elder abuse and neglect.

Perspectives of unlicensed assistive personnel on career development.

BACKGROUND: An equivalency program, Method 3, is a viable but underused option for unlicensed assistive personnel (UAP) who pursue licensure. This study describes the perceptions of UAP on opportunities for career development. METHODS: Eighteen UAP participated in three focus groups. Thematic analysis was conducted with verbatim transcription. RESULTS: Three major themes represented the lively discussions that occurred: core driving forces, processes of career development, and anticipated and desirable outcomes. Various subthemes described these major themes. CONCLUSION: Method 3 provides a realistic approach to help UAP persevere with career development. Collaboration with management and peers, encouragement, and effective communication contributed to the success of participants, despite obstacles and challenges. Camaraderie and flexible scheduling were critical elements in participants' pursuit of first licensure. Taking small steps was described as an effective approach for UAP to persevere with career development. Support for informal career development is essential. Nursing leaders should consider an equivalency approach to accommodate individual preferences and learning needs for career development.

Decision-making about cervical cancer screening methods by homeless women.

To evaluate the perspectives and preferences of homeless women for traditional provider- and a novel low cost self-collected cytology screening technique, 17 interviews were conducted with women who participated in both phases of a comparative trial. Subjects were recruited from a comprehensive homeless service center and a residential program serving homeless women. Constructivist grounded theory guided data collection and analysis. Results showed self-collection was favored over provider-collected cytology, but that the women perceived that test accuracy trumped comfort. Although many women expressed inaccurate perceptions and beliefs about cervical cancer and screening, the women participated in and valued screening. Misconceptions about cervical malignancy and prevention strategies contributed to their complex appraisal of the two screening methods. Homeless women may partner with providers to develop and test effective interventions with high promise for improving their health and these insights may aid in developing effective interventions for diverse underserved communities.

"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.

"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.].

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.

"I can't do it on my own": motivation to enter therapy for depression among low income, second generation, Latinas.

The purpose of this study was to explore the perspectives of 12 low income, second generation, Latinas seeking to enter therapy for depression. Qualitative data collected at the time of a diagnostic interview (SCID) using Motivational Interviewing techniques, included an assessment of the woman's motivation to enter therapy and confidence that she could follow through with treatment. Data were analyzed using Constructivist Grounded Theory and revealed six positive and six painful motivators that catalyzed the women towards treatment amidst complications related to "self" and "time." Despite demanding schedules for taking care of their families, finances, current or estranged partners, and work responsibilities, women were determined to get help for their depression.

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.