[Better assessment, better care: Quetci, a questionnaire for assessing cognitive disorders in nursing practice]. / Mieux évaluer, mieux soigner : le Quetci, un questionnaire d'évaluation des troubles cognitifs IDE.

Cognitive disorders can have significant repercussions on the quality of care and daily life for patients. We have developed a new tool specifically designed for nursing practice to identify these problems in patients with brain tumors. The Cognitive Impairment Assessment Questionnaire for nursing practice is an objective, quick and easy-to-administer tool that is readily accepted by patients.

A Shifting Paradigm Toward Family-Centered Care in Neuro-Oncology: A Longitudinal Quasi-Experimental Mixed-Methods Feasibility Study.

Family-centered intervention can help families facing illness-related issues. We investigated the feasibility of Family and Network Conversations (FNCs) in high-grade glioma patients and their families. Quasi-experimental feasibility study with longitudinal mixed-methods design. Patients and families were invited to three FNCs over 1 year. They completed questionnaires at four time points and expressed their perspectives on the intervention through telephone interviews. Nurses' perspectives were collected in a focus group. Twenty-one patients and 47 family members were included. On average, patients were 66 years old, mainly male, married, living with caregivers, with unifocal cancer. On average, caregivers were 47 years old, mainly female, being spouses or children of the patient. Quantitative and qualitative data did not always match and expanded each other. Nurse-delivered FNCs holistically addressed families' needs while strengthening family's dialogue and union. Nurses felt empowered, underling that advanced competencies were required. Nurse-delivered FNCs are feasible to provide family-centered care, but they should be tailored to each family's needs.

Caregivers of Patients With Brain Metastases: A Description of Caregiving Responsibilities and Psychosocial Well-being.

BACKGROUND: There are increasing numbers of cancer patients with brain metastases, and there is a high potential for caregiving burden. Little work has explored caregiving responsibilities and psychosocial well-being in informal family caregivers (FCGs) of cancer patients with brain metastases. This study aimed to address this gap in the literature. METHODS: Data were drawn from baseline pilot study data. Caregivers completed demographic information and provided a self-report of their caring responsibilities and psychosocial well-being via questionnaire. RESULTS: Participants were 21 FCGs of patients with brain metastases. Many caregivers are devoting extensive time to providing care; there was high variability in the number and types of caregiving activities reported. Although many caregivers report feeling well supported, other aspects of psychosocial well-being were less robust, including anxiety, depression, burden, and coping self-efficacy. CONCLUSION: Although FCGs reported mitigating factors such as social support, they still experience significant distress. Findings support previous work suggesting that neuro-oncology caregiving is burdensome, with adverse effects on health and well-being. Foundational work, such as this, will set the stage to identify areas for future intervention.

Gender Differences in Longitudinal Associations Between Intimate Care, Resiliency, and Depression Among Informal Caregivers of Patients Surviving the Neuroscience Intensive Care Unit.

BACKGROUND/OBJECTIVE: Informal caregivers (e.g., family and friends) are at risk for developing depression, which can be detrimental to both caregiver and patient functioning. Initial evidence suggests that resiliency may reduce the risk of depression. However, gender differences in associations between multiple psychosocial resiliency factors and depression have not been examined among neuroscience intensive care unit (neuro-ICU) caregivers. We explored interactions between caregiver gender and baseline resiliency factors on depression symptom severity at baseline through 3 and 6 months post-discharge. METHODS: Caregivers (N = 96) of neuro-ICU patients able to provide informed consent to participate in research were enrolled as part of a prospective, longitudinal study in the neuro-ICU of a major academic medical center. Caregiver sociodemographics and resiliency factors (coping, mindfulness, self-efficacy, intimate care, and preparedness for caregiving) were assessed during the patient's hospitalization (i.e., baseline). Levels of depressive symptoms were measured using the Hospital Anxiety and Depression Scale at baseline, 3 months, and 6 months post-discharge. RESULTS: Baseline depressive symptoms predicted depressive symptoms at both 3- and 6-month follow-ups, with no difference at any time point in rates of depression by gender. At baseline, greater levels of coping, mindfulness, and preparedness for caregiving were individually associated with lower levels of concurrent depression regardless of gender (ps < 0.006). The main effect of baseline coping remained significant at 3-month follow-up (p = 0.045). We observed a trend-level interaction between gender and baseline intimate care, such that among male caregivers only, high baseline intimate care was associated with lower depression at 3-month follow-up (p = 0.055). At 6-month follow-up, we observed a significant interaction between caregiver gender and baseline intimate care, such that male caregivers reporting high intimate care reported lower symptoms of depression than females reporting high intimate care (p = 0.037). CONCLUSIONS: Results support implementation of psychosocial resiliency interventions for caregivers of patients admitted to the neuro-ICU early in the recovery process. Male caregivers may particularly benefit from strategies focused on increasing intimate care (e.g., physical and emotional affection with their loved one) and quality of the patient-caregiver dyadic relationship.

Psychometric Evaluation of the Caregiver Needs Screen in Neuro-Oncology Family Caregivers.

BACKGROUND AND PURPOSE: The informal care demands of primary malignant brain tumor (PMBT) patients include unique issues associated with neurological and cognitive symptoms. Existing caregiver needs questionnaires do not include these disease-specific symptoms, which are particularly distressing. Therefore, we have developed the neuro-oncology Caregiver Needs Screen (CNS) and evaluated its psychometric properties. METHODS: The 32-item instrument was developed based on PMBT caregiver interviews (N = 109) and expert review. The CNS was tested along measures of depression, anxiety, burden, and mastery in 122 PMBT caregivers. Principal components analysis was used to examine item properties and internal structure. Internal consistency reliability and construct validity were assessed. RESULTS: Six subscales were identified with internal consistency ranging between alpha = .653 and .857. Convergent validity was verified by moderate/high correlations between measures of caregiver well-being and CNS scale scores. CONCLUSIONS: Findings provide preliminary evidence of reliability and validity for the CNS. This instrument can be useful when assessing caregivers' needs for supportive care.

A New Era in Pediatric Hospice Care for Military Families.

: This series on palliative care is developed in collaboration with the Hospice and Palliative Nurses Association (HPNA; https://advancingexpertcare.org). The HPNA aims to guide nurses in preventing and relieving suffering and in giving the best possible care to patients and families, regardless of the stage of disease or the need for other therapies. The HPNA offers education, certification, advocacy, leadership, and research.

Social networks of caregivers of patients with primary malignant brain tumor.

Family caregivers are increasingly recognized as a vital part of the comprehensive treatment of cancer. Many caregivers, especially those caring for patients with primary malignant brain tumor (PMBT), report feeling overwhelmed by providing care. Social support can be protective for caregiving, but there is little research on the composition of social networks of caregivers. The research describes these social networks. Caregivers were recruited from a neuro-oncology clinic at an NCI-designated comprehensive cancer center in the United States from May to August 2017. Caregivers listed social network resources that they either have approached or could approach for help in six caregiving areas. Twenty-eight caregivers provided social network data. Most caregivers had at least some support in each category, with the most people in hands on and emotional support. Communication and financial support were less populated and were most likely to have no resources listed. Most resources were unique to one support category, but a smaller number of resources provided multiple types of support. Our data provide information for targeting interventions to address support needs in caregivers of patients with PMBT. These findings also represent the first time the compositions of the social networks of caregivers of patients with PMBT have been presented.

Neuro-Oncology Nurse Navigation: Developing the Role for a Unique Patient Population.

Navigation seeks to assess and address barriers that hinder a patient's access to care. With the success of the nurse navigation program at Penn Medicine's Abramson Cancer Center, leadership expanded navigation to neuro-oncology. The purpose of this article is to describe this population's unique needs and the effect of nurse navigation. Although the navigation role maintains integrity with regard to scope of practice, specialized navigation strategies are tailored to the neuro-oncology population and are different from other disease sites.

Reflections on 50 Years of Neuroscience Nursing: Neuro-Oncology, Moving Forward by Looking Back.

During the past 50 years, there have been more than 100 articles published in the Journal of Neuroscience Nursing covering the topic of neuro-oncology. This article will explore the historical implications and milestones from these articles. The analysis highlights the scope and depth of the many articles as they relate to the advancements in neuro-oncology.

Tumor Treating Fields Technology: Alternating Electric Field Therapy for the Treatment of Solid Tumors.

OBJECTIVE: To provide an overview of Tumor Treating Fields (TTFields) and the Optune device in the treatment of glioblastoma multiforme as well as discuss the evolution of TTFields technology for the treatment of different tumor types. DATA SOURCES: Peer reviewed publications, proceedings, and Internet-based resources. CONCLUSION: TTFields represent a unique technological modality for the effective treatment of glioblastoma multiforme and potentially other solid tumors. Oncology nurses are situated to play important roles as educators and advocates for patients and caregivers on the adherent use and management of this new and evolving treatment technology. IMPLICATIONS FOR NURSING PRACTICE: The increasing use of TTFields in cancer treatment draws attention to the expanding role for oncology nurses in the administration of this unique therapy. As an educator and advocate, the oncology nurse guides the cancer patient and caregiver through understanding the mechanism of action, initiation of TTFields treatment, and adjusting to the daily challenges of treatment administration, management of side effects, and optimizing compliance to treatment adherence to maximize treatment outcomes.

Mediating burden and stress over time: Caregivers of patients with primary brain tumor.

There is a growing literature on the effects of cancer caregiving on the well-being of informal family caregivers. However, there has been little longitudinal research on caregivers of patients with the complex, rapidly-changing disease of primary malignant brain tumor. OBJECTIVE: Our objective was to model longitudinal relationships between caregiver burden, social support, and distress within caregivers of patients with primary brain tumor. METHODS: Caregiver participants were recruited from a neuro-oncology clinic. Caregiver questionnaire data, including sociodemographics, social support, depression, anxiety, and caregiving burden, were collected at 4 time points (diagnosis, +4, +8, and +12 mo). Using the stress process model as a guide, we hypothesized that early burden would predict later depression and anxiety, and this would be mediated by social support. RESULTS: Using data from 147 participants, we found support for the stress process model in caregivers of patients with primary brain tumor. Greater burden at diagnosis was associated with lower social support at 4 months, and lower social support was related to higher depression and anxiety at 8 months, as well as to changes in anxiety between 8 and 12 months. CONCLUSION: We found evidence of the stress process model in caregivers of primary brain tumor patients unfolding over the course of a year after diagnosis. Our findings emphasize the potential importance of early programs for caregivers to ensure low initial levels of burden, which may have a positive effect on social support, depression, and anxiety.

Prognostic awareness and communication preferences among caregivers of patients with malignant glioma.

OBJECTIVE: Malignant glioma (MG) is a devastating neuro-oncologic disease with almost invariably poor prognosis, yet many families facing malignant glioma have poor prognostic awareness (PA), or the awareness of the patient's incurable disease and shortened life expectancy. Accurate PA is associated with favorable medical outcomes at end-of-life for patients and psychosocial outcomes for informal caregivers (ICs) through bereavement. To date, however, no study has specifically examined PA among MG ICs and the information they receive that shapes their awareness. METHODS: Thirty-two ICs of patients with malignant glioma completed a semi-structured assessment of their awareness of the incurability and life expectancy of their loved one's illness, and to understand their sources of prognostic information and preferences for communication of prognostic information. RESULTS: Twenty-two (69%) ICs had full PA-awareness of the incurability of malignant glioma and accurate estimates of their loved ones' life expectancy. Twenty-three (72%) felt that prognostic information was extremely or very important to possess, and 16 (50%) desired more prognostic information. The majority of ICs received prognostic information from physicians and the Internet. Qualitative analyses revealed that many ICs had difficulty navigating medical encounters in which they concurrently wanted to elicit prognostic information from physicians and protect patients from such information. CONCLUSIONS: Accurate and timely PA is necessary for ICs to serve as critical members of health care teams. Interventions are needed to foster ICs' skills in navigating prognostic communication with patients and health care providers and thereby improve their ability to advocate for their loved one's wishes.

Caregivers' quality of life and psychological health in response to functional, cognitive, neuropsychiatric and social deficits of patients with brain tumour: protocol for a cross-sectional study.

INTRODUCTION: Patients with gliomas generally present cognitive, neuropsychiatric and functional deficits. Although previous research has shown that their caregivers present a poor quality of life and poor mental health, only a few studies have tested in a comprehensive way which deficits/preserved abilities of patients predominantly impact their caregivers. Furthermore, only a few studies have focused on the social impact of gliomas, which may also damage the caregivers' quality of life. Therefore, this cross-sectional study aims to investigate which patients' impairments are particularly deleterious for the caregivers and whether the histological characteristics of the gliomas also affect their quality of life. METHODS AND ANALYSIS: In order to examine these research questions, this study intends to include 180 patients (60 patients with grade II gliomas, 60 patients with grade III gliomas and 60 patients with grade IV gliomas), their caregivers and 60 healthy controls. While patients will complete a full battery of cognitive, neuropsychiatric, functional and social tests, caregivers will complete questionnaires about their quality of life, depression, anxiety and burden. Patients' performances and caregivers' reports of depression and anxiety will be compared with the scores of healthy controls. Eventually, our aim will be to provide specific care support both to reduce patients' deficits and alleviate caregivers' difficulties. ETHICS AND DISSEMINATION: The study has obtained the approval of the local faculty ethics committee ('Comité d'éthique en sciences comportementales'; 2016-5 S41 and 2015-3 S37). On completion of the study, data will be kept by Lille University for 5 years before they are destroyed. Study findings will be disseminated through peer-reviewed journal publications and conference presentations with no reference to a specific individual.

Anxiety and Depression Associated With Burden in Caregivers of Patients With Brain Metastases.

PURPOSE/OBJECTIVES: To describe and examine the relationship between caregiver burden and the affective disorders anxiety and depression in caregivers of patients with brain metastases.
. DESIGN: Cross-sectional, descriptive, correlational.
. SETTING: Moores Cancer Center at the University of California, San Diego. 
. SAMPLE: 56 family caregivers of patients with brain metastases from solid tumors at other primary sites.
. METHODS: Self-administered survey.
. MAIN RESEARCH VARIABLES: Caregiver burden, anxiety, and depression.
. FINDINGS: With the exception of caregiver esteem, no statistically significant relationships were noted between impact on schedule, a dimension of caregiver burden, and screening positive for affective disorders.
. CONCLUSIONS: Findings from this study support previous reports indicating that the odds of having anxiety and depressive symptoms are greater in family caregivers who report higher levels of caregiver burden.
. IMPLICATIONS FOR NURSING: The identification and management of caregiver burden are important considerations for a comprehensive cancer care program. Addressing the needs of the cancer caregiver, who is at heightened risk for various psychological, physical, financial, and social problems, is increasingly vital.

"She Was a Little Social Butterfly": A Qualitative Analysis of Parent Perception of Social Functioning in Adolescent and Young Adult Brain Tumor Survivors.

Psychosocial sequelae of diagnosis and treatment for childhood brain tumor survivors are significant, yet little is known about their impact on adolescent and young adult (AYA) brain tumor survivors. Interviews were conducted with parents of AYA brain tumor survivors with a focus on social functioning. Semistructured interviews were conducted with English- and Spanish-speaking parents of AYA brain tumor survivors ≥10 years of age who were >2 years postdiagnosis, and analyzed using emergent themes theoretically integrated with a social neuroscience model of social competence. Twenty parents representing 19 survivors with a survivor mean age 15.7 ± 3.3 years and 10.1 ± 4.8 years postdiagnosis were interviewed. Several themes relevant to the social neuroscience social competence model emerged. First, parents' perceptions of their children's impaired social functioning corroborated the model, particularly with regard to poor social adjustment, social withdrawal, impaired social information processing, and developmentally inappropriate peer communication. Second, ongoing physical and emotional sequelae of central nervous system insults were seen by parents as adversely affecting social functioning among survivors. Third, a disrupted family environment and ongoing parent psychosocial distress were experienced as salient features of daily life. We document that the aforementioned framework is useful for understanding the social impact of diagnosis and treatment on AYA brain tumor survivorship. Moreover, the framework highlights areas of intervention that may enhance social functioning for AYA brain tumor survivors.

The Hidden Morbidity of Cancer: Burden in Caregivers of Patients with Brain Metastases.

Caregiving is a highly individualized experience. Although numerous articles have been published on caregiver burden from a variety of diagnoses and conditions, this article presents the unique features of caregiving in patients with brain metastases. Improved long-term survival, concerns about disease recurrence or progression, the cancer experience (initial diagnosis, treatment, survivorship, recurrence, progression, and end of life), and the increasing complexity of cancer treatments add to the demands placed on the caregivers of patients with brain metastases. Health care professionals must identify caregiver burden and administer the appropriate interventions, which must be as unique and individualized as the caregivers' experiences.

[The nurse and management of glioblastoma]. / Le rôle de l'infirmier référent en neuro-oncologie.

Lead nurses in neuro-oncology support patients with glioblastoma and their family from the time of diagnosis. They work closely with all health professionals practising in hospitals and in the home. They coordinate patients' care pathways, from the diagnosis consultation to their death.