Huibrie C. Pieters

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 patients 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.

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

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.

“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 womans 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.

Implementing psychological first-aid training for medical reserve corps volunteers.

OBJECTIVE We assessed the feasibility and impact on knowledge, attitudes, and reported practices of psychological first-aid (PFA) training in a sample of Medical Reserve Corps (MRC) members. Data have been limited on the uptake of PFA training in surge responders (eg, MRC) who are critical to community response. METHODS Our mixed-methods approach involved self-administered pre- and post-training surveys and within-training focus group discussions of 76 MRC members attending a PFA training and train-the-trainer workshop. Listen, protect, connect (a PFA model for lay persons) focuses on listening and understanding both verbal and nonverbal cues; protecting the individual by determining realistic ways to help while providing reassurance; and connecting the individual with resources in the community. RESULTS From pre- to post-training, perceived confidence and capability in using PFA after an emergency or disaster increased from 71% to 90% (P < .01), but no significant increase was found in PFA-related knowledge. Qualitative analyses suggest that knowledge and intentions to use PFA increased with training. Brief training was feasible, and while results were modest, the PFA training resulted in greater reported confidence and perceived capability in addressing psychological distress of persons affected by public health threats. CONCLUSION PFA training is a promising approach to improve surge responder confidence and competency in addressing postdisaster needs.

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 childs 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.

“i’m Still Here”: Resilience Among Older Survivors of Breast Cancer

Background: Cancer presents a severe adversity that calls on intrinsic strength factors such as resilience. Breast cancer is especially common among older women. Understanding the interaction between the mechanisms of resilience and the psychosocial impact of cancer requires consideration of developmental age. Objective: This research explores resilience from the point of view of older women who recently completed treatment for early-stage breast cancer. Methods: Constructivist grounded theory directed data collection and analysis of 31 personal, semistructured interviews with 18 women aged 70 to 94 years. Results: Faced with overcoming the adversity of a first cancer experience, participants rebounded and restored balance to their lives with a sense that they did the work of managing cancer with self-efficacy and autonomy. Resilience was evidenced as a multidimensional process containing a natural interaction of attributes. Self-reliance, optimism, and persevering were embedded in human interconnectedness. Conclusions: The process of cancer survivorship was positioned in the larger picture of the joys and hardships of having lived a long life. The core self continued through these changing times, connecting the past, present, and anticipated future, as exemplified by “I’m still here.” Regaining balance required tenacity, pragmatism, and dedication to do the work that needed to be done to treat cancer and move on with life. Implications for Practice: Resilience is a valuable resource in strength-based approaches in healthcare. Practical examples for clinicians who follow a strength-based approach to promote adaptation for the continuing challenges of breast cancer survivorship among older women include acknowledging unique individual expressions of resilience. Gero-oncology is a salient field for multidisciplinary teams who seek to study resilience.

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.

Intimate Partner Violence Among Women Diagnosed With Cancer.

Background: There is growing evidence that women diagnosed with cancer can experience intimate partner violence (IPV). This combined experience of cancer and abuse can have a profound effect on health and treatment outcomes for these cancer survivors. Objective: The purpose of this literature review was to assess the presence of IPV among female cancer survivors and to provide oncology nurses with clinical guidelines about IPV. Methods: A systematic strategy was used to locate original research from 4 databases: CINAHL, PubMed, PsycINFO, and Web of Science. Key words were used to help identify articles that focused on cancer, abuse, treatment decision making, and clinical guidelines. Results: The 10 selected articles that met the inclusion criteria were published between 2005 and 2014. The reviewed studies provided accounts of abusive partner behaviors toward women throughout their cancer trajectory. Global organizations provided the framework for clinical guidelines. Conclusions: Challenges faced by women who are concurrently living with IPV and cancer survivorship can impact treatment decision making and health outcomes. The assessment and recognition of IPV by oncology nurses are essential to help create a clinical environment in which patients feel safe and supported. Implications for Practice: This review includes clinical guidelines and describes legal considerations for oncology nurses to consider when they address and respond to IPV in their practice. The use of clinical guidelines that focus on IPV can provide standardized care in the oncology setting that can further help to meet the needs of these women.

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.

Collaboration in grounded theory analysis: Reflections and practical suggestions

Analytic triangulation is a well known strategy to enhance rigor in qualitative research, but little is known about the process to develop and maintain an intellectually vital analytic dyad. As two recent doctoral graduates, we reflect back on our mutually beneficial, interdisciplinary collaboration. We describe pragmatic guidelines to select an effective analytic partner, to structure work sessions, and to respond to the challenges of shifting needs over time. Utilizing specific examples, we address the intellectual, interpretive, and personal benefits of our analytic partnership. Our reflections may be useful for scholars using grounded theory such as doctoral students, early career researchers, as well as faculty who are mentoring doctoral students doing qualitative research.