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1.
Nurse Educ ; 49(4): E175-E179, 2024.
Article in English | MEDLINE | ID: mdl-38299887

ABSTRACT

BACKGROUND: Limited evidence exists on factors influencing nursing students' sleep quality during clinical practicums. PURPOSE: This study examined the sleep quality of nursing students and factors that affect sleep quality during clinical practicums. METHODS: Undergraduate nursing students (n = 135) enrolled in clinical practicums in 3 universities completed questionnaires including sociodemographics and the Pittsburgh Sleep Quality Index (PSQI). Stepwise linear regression evaluated factors predicating sleep quality. RESULTS: Seventy percent of nursing students reported poor sleep quality. Weekly work hours and clinical hours were significant factors in predicting global PSQI scores, subjective sleep quality, sleep duration, sleep efficiency, and daytime dysfunctions. The students' race was related to sleep latency and sleeping medication. Clinical hours and living on campus were associated with sleep disturbances. CONCLUSION: Knowing the factors that influence nursing students' sleep during clinical practicums, nurse educators can help students improve sleep health and clinical experience.


Subject(s)
Education, Nursing, Baccalaureate , Nursing Education Research , Sleep Quality , Students, Nursing , Humans , Students, Nursing/psychology , Students, Nursing/statistics & numerical data , Female , Male , Surveys and Questionnaires , Young Adult , Adult , Nursing Evaluation Research , Preceptorship
2.
J Trauma Nurs ; 30(5): 296-304, 2023.
Article in English | MEDLINE | ID: mdl-37702733

ABSTRACT

BACKGROUND: Critically ill trauma patients are at an increased risk for infection, which can increase morbidity and mortality. The use of probiotic preparations for infection prevention is promising, yet the results of their effectiveness are mixed. OBJECTIVES: To synthesize current research regarding the use of probiotics to prevent and possibly treat infection in the critically ill adult trauma population. CONCLUSION: Upon reviewing the current body of evidence, one cannot definitively conclude that probiotic supplementation in the critically-ill trauma population decreases health care-associated infection rates and improves outcomes, but most published evidence supports their use.


Subject(s)
Cross Infection , Probiotics , Adult , Humans , Critical Illness/therapy , Cross Infection/prevention & control , Probiotics/therapeutic use
4.
Cancer Nurs ; 45(5): 363-368, 2022.
Article in English | MEDLINE | ID: mdl-34608049

ABSTRACT

BACKGROUND: Glioblastoma multiforme (GBM) is an aggressive brain tumor. Patients commonly rely on family caregivers for physical and emotional support. We previously demonstrated that caregiver mastery measured shortly after diagnosis was predictive of GBM patient survival, corrected for known predictors of survival (n = 88). OBJECTIVE: The aims of this study were to verify the contribution of caregiver mastery and investigate the added value of mastery over other predictors to predict 15-month survival. METHODS: Data collected for a longitudinal study (NCT02058745) were used. Multivariable Cox regression analyses were performed for models with known clinical predictors (patient age, Karnofsky Performance Status, type of surgery, O6-methylguanine-DNA-methyltransferase promotor methylation status), with and without adding caregiver mastery to predict mortality. The added value of each model in discriminating between patients with the lowest and highest chances of survival at 15 months was investigated through Harrell's concordance index. RESULTS: In total, 41 caregiver-patient dyads were included. When evaluating solely clinical predictors, Karnofsky Performance Status and patient age were significant predictors of mortality (hazard ratio [HR], 0.974; 95% confidence interval [CI], 0.949-1.000; and HR, 1.045; 95% CI, 1.002-1.091, respectively). Adding caregiver mastery, these clinical predictors remained statistically significant, and mastery showed an HR of 0.843 (95% CI, 0.755-0.940). The discriminative value improved from C = 0.641 (model with known clinical predictors) to C = 0.778 (model with mastery), indicating the latter is superior. CONCLUSIONS: We confirm that caregiver mastery is associated with GBM patient survival. IMPLICATIONS FOR PRACTICE: Incorporating support and guidance for caregivers into standard care could lead to benefits for caregiver well-being and patient outcomes.


Subject(s)
Brain Neoplasms , Glioblastoma , Caregivers/psychology , Glioblastoma/pathology , Humans , Longitudinal Studies
5.
Support Care Cancer ; 30(3): 2059-2068, 2022 Mar.
Article in English | MEDLINE | ID: mdl-34655326

ABSTRACT

PURPOSE: Patients with primary malignant brain tumors have high symptom burden and commonly rely on family caregivers for practical and emotional support. This can lead to negative mental and physical consequences for caregivers. We investigated effectiveness of an 8-week nurse-led online needs-based support program (SmartCare©) with and without online self-guided cognitive behavioral therapy (CBT) for depression compared to enhanced care as usual (ECAU) on depressive symptoms, caregiving-specific distress, anxiety, mastery, and burden. METHODS: Family caregivers scoring ≥ 6 on a depressive symptoms inventory were randomized to three groups: ECAU plus self-guided CBT and SmartCare©; ECAU plus SmartCare©; ECAU only. Primary outcomes (depressive symptoms; caregiving-specific distress) and secondary outcomes (anxiety, caregiver mastery, and caregiver burden) were assessed online. Intention to treat (ITT) and per protocol (PP) analyses of covariance corrected for baseline scores were performed for outcomes at 4 months. RESULTS: In total, 120 family caregivers participated. Accrual and CBT engagement were lower than expected, therefore intervention groups were combined (n = 80) and compared to ECAU (n = 40). For depressive symptoms, no statistically significant group differences were found. Caregiving-specific distress decreased in the intervention group compared with ECAU (ITT: p = 0.01, partial ɳ2 = 0.08; PP: p = 0.02, partial ɳ2 = 0.08). A trend towards improvement in mastery for the intervention group compared with ECAU was identified (ITT: p = 0.08, partial ɳ2 = 0.04; PP: p = 0.07, partial ɳ2 = 0.05). CONCLUSIONS: SmartCare©, with or without self-guided CBT, reduced caregiving-specific distress with a trend towards improving mastery. SmartCare© has the potential to improve the lives of families coping with a brain tumor diagnosis. TRIAL REGISTRATION NUMBER: NCT02058745; 10 February 2014.


Subject(s)
Brain Neoplasms , Cognitive Behavioral Therapy , Adaptation, Psychological , Anxiety/therapy , Caregivers , Humans , Quality of Life
6.
Support Care Cancer ; 29(5): 2423-2434, 2021 May.
Article in English | MEDLINE | ID: mdl-32918611

ABSTRACT

PURPOSE: Caregivers of people with cancer represent a large, overburdened, and under-recognized part of the cancer care workforce. Research efforts to address the unmet needs of these caregivers are expanding with studies focused on caregivers' skill sets, physical and psychological health, and integration into healthcare delivery. As this field of research continues to expand, integrating caregivers' input is vital to studies to ensure that research aligns with their experiences. METHODS: This is a focus group study of 15 cancer caregivers conducted during a cancer caregiving workshop at the University of Pittsburgh in February 2020. During the workshop, caregivers reviewed, critiqued, and proposed priorities to support caregivers of adults with cancer. We used a multistage consensus building approach to identify priority areas of research and clinical practice to address caregivers' experiences and needs. We used descriptive content analysis to summarize caregivers' priorities. RESULTS: Caregiver-identified priorities included (1) training and information about cancer and treatment, (2) caregiver integration into the patient's healthcare delivery, (3) assistance with navigating the healthcare system, (4) focus on caregiver health and well-being, and (5) policy reform to address caregiver needs. We identified ways in which these priorities can inform cancer caregiving research and practice. CONCLUSION: These recommendations should be considered by researchers, clinicians, cancer center leadership, and policymakers interested in creating caregiver-focused research protocols, interventions, and support systems.


Subject(s)
Caregivers/psychology , Delivery of Health Care/methods , Neoplasms/therapy , Stakeholder Participation/psychology , Aged , Female , Humans , Male , Neoplasms/psychology
7.
Article in English | MEDLINE | ID: mdl-35083470

ABSTRACT

BACKGROUND: Following aneurysmal subarachnoid hemorrhage (aSAH), the brain is susceptible to ferroptosis, a type of iron-dependent cell death. Therapeutic intervention targeting the iron homeostasis pathway shows promise for mitigating ferroptosis and improving recovery in animal models, but little work has been conducted in humans. DNA methylation (DNAm) plays a key role in gene expression and brain function, plasticity, and injury recovery, making it a potentially useful biomarker of outcomes or therapeutic target for intervention. Therefore, in this longitudinal, observational study, we examined the relationships between trajectories of DNAm in candidate genes related to iron homeostasis and acute (cerebral vasospasm and delayed cerebral ischemia) and long-term (Glasgow Outcome Scale [GOS, unfavorable = 1-3] and death) patient outcomes after aSAH. RESULTS: Longitudinal, genome-wide DNAm data were generated from DNA extracted from post-aSAH cerebrospinal fluid (n = 260 participants). DNAm trajectories of 637 CpG sites in 36 candidate genes related to iron homeostasis were characterized over 13 days post-aSAH using group-based trajectory analysis, an unsupervised clustering method. Significant associations were identified between inferred DNAm trajectory groups at several CpG sites and acute and long-term outcomes. Among our results, cg25713625 in the STEAP3 metalloreductase gene (STEAP3) stood out. Specifically, in comparing the highest cg25713625 DNAm trajectory group with the lowest, we observed significant associations (i.e., based on p-values less than an empirical significance threshold) with unfavorable GOS at 3 and 12 months (OR = 11.7, p = 0.0006 and OR = 15.6, p = 0.0018, respectively) and death at 3 and 12 months (OR = 19.1, p = 0.0093 and OR = 12.8, p = 0.0041, respectively). These results were replicated in an independent sample (n = 100 participants) observing significant associations with GOS at 3 and 12 months (OR = 8.2, p = 0.001 and OR = 6.3, p = 0.0.0047, respectively) and death at 3 months (OR = 2.3, p = 0.008) and a suggestive association (i.e., p-value < 0.05 not meeting an empirical significance threshold) with death at 12 months (OR = 2.0, p = 0.0272). In both samples, an additive effect of the DNAm trajectory group was observed as the percentage of participants with unfavorable long-term outcomes increased substantially with higher DNAm trajectory groups. CONCLUSION: Our results support a role for DNAm of cg25713625/STEAP3 in recovery following aSAH. Additional research is needed to further explore the role of DNAm of cg25713625/STEAP3 as a biomarker of unfavorable outcomes, or therapeutic target to improve outcomes, to translate these findings clinically.

8.
Article in English | MEDLINE | ID: mdl-35359917

ABSTRACT

Background: Delayed cerebral ischemia (DCI) is a common secondary complication and an important cause of disability and mortality among patients who survive aneurysmal subarachnoid hemorrhage (aSAH). Knowledge on DCI pathogenesis, risk factors, and biomarkers are essential for early detection and improved prognosis. To investigate the role of DNA methylation in DCI risk, we conducted an epigenome-wide association study (EWAS) in 68 patients followed up to 1 year after the initial aneurysm rupture. Blood samples were collected within 48 h post hemorrhage and used for DNA methylation profiling at ~ 450k CpG sites. A separate cohort of 175 patients was sequenced for the top CpG sites from the discovery analysis for a replication of the EWAS findings. Results: EWAS did not identify any epigenome-wide significant CpGs. The top signal, cg18031596, was annotated to ANGPT1, a gene with critical functions in angiogenesis after vascular injury. Post hoc power calculations indicated a well-powered discovery analysis for cg18031596. Analysis of the replication cohort showed that four out of the five CpG sites sequenced at the ANGPT1 locus passed a Bonferroni-adjusted significance threshold. In a pooled analysis of the entire sample, three out of five yielded a significant p-value, and the top association signal (p-value = 0.004) was seen for a CpG that was not originally measured in the discovery EWAS. However, four ANGPT1 CpG sites had an opposite effect direction in the replication analysis compared to the discovery EWAS, marking a failure of replication. We carefully examined this observed flip in directions and propose several possible explanations in addition to that it was a random chance that ANGPT1 ranked at the top in the discovery EWAS. Conclusions: We failed to demonstrate a significant and consistent effect of ANGPT1 methylation in DCI risk in two cohorts. Though the replication attempt to weaken the overall support of this gene, given its relevant function and top rank of significance in the EWAS, our results call for future studies of larger aSAH cohorts to determine its relevance for the occurrence of DCI.

9.
J Nurs Meas ; 28(2): 205-228, 2020 08 01.
Article in English | MEDLINE | ID: mdl-32341171

ABSTRACT

BACKGROUND AND PURPOSE: The purpose of this study was to examine the psychometric properties of the Patient Assessment of Own Functioning Inventory (PAOFI) following aneurysmal subarachnoid hemorrhage (aSAH). METHODS: The PAOFI was completed by 182 participants 3 months after verified aSAH. Exploratory factor analysis was used to evaluate the underlying factor structure of the PAOFI and reliability and concurrent validity were evaluated for each subscale. RESULTS: A three-factor structure accounted for 58.9% of the extracted variance. Cronbach's alpha coefficients for extracted factors ranged from .867 to .924. The PAOFI subscales demonstrated concurrent validity with neuropsychological tests measuring similar constructs. CONCLUSION: There is evidence of reliability and validity of the PAOFI following aSAH. Further studies are needed to confirm these results.


Subject(s)
Aneurysm/complications , Neuropsychological Tests/standards , Patient Reported Outcome Measures , Psychometrics/standards , Recovery of Function , Subarachnoid Hemorrhage/complications , Surveys and Questionnaires/standards , Adult , Aged , Factor Analysis, Statistical , Female , Humans , Male , Middle Aged , Pennsylvania , Reproducibility of Results
10.
Neurocrit Care ; 32(2): 550-563, 2020 04.
Article in English | MEDLINE | ID: mdl-31346934

ABSTRACT

BACKGROUND/OBJECTIVE: Preclinical evidence suggests that iron homeostasis is an important biological mechanism following aneurysmal subarachnoid hemorrhage (aSAH); however, this concept is underexplored in humans. This study examined the relationship between patient outcomes following aSAH and genetic variants and DNA methylation in the hepcidin gene (HAMP), a key regulator of iron homeostasis. METHODS: In this exploratory, longitudinal observational study, participants with verified aSAH were monitored for acute outcomes including cerebral vasospasm (CV) and delayed cerebral ischemia (DCI) and evaluated post-discharge at 3 and 12 months for long-term outcomes of death and functional status using the Modified Rankin Scale (mRS; poor = 3-6) and Glasgow Outcome Scale (GOS; poor = 1-3). Participants were genotyped for two genetic variants, and DNA methylation data were collected from serial cerebrospinal fluid over 14 days post-aSAH at eight methylation sites within HAMP. Participants were grouped based on their site-specific DNA methylation trajectory, with and without correcting for cell-type heterogeneity (CTH), and the associations between genetic variants and inferred DNA methylation trajectory groups and patient outcomes were tested. To correct for multiple testing, an empirical significance threshold was computed using permutation testing. RESULTS: Genotype data for rs10421768 and rs7251432 were available for 241 and 371 participants, respectively, and serial DNA methylation data were available for 260 participants. Acute outcome prevalence included CV in 45% and DCI in 37.1% of the overall sample. Long-term outcome prevalence at 3 and 12 months included poor GOS in 23% and 21%, poor mRS in 31.6% and 27.3%, and mortality in 15.1% and 18.2%, respectively, in the overall sample. Being homozygous for the rs7251432 variant allele was significantly associated with death at 3 months (p = 0.003) and was the only association identified that passed adjustment for multiple testing mentioned above. Suggestive associations (defined as trending toward significance, p value < 0.05, but not meeting empirical significance thresholds) were identified between the homozygous variant allele for rs7251432 and poor GOS and mRS at 3 months (both p = 0.04) and death at 12 months (p = 0.02). For methylation trajectory groups, no associations remained significant after correction for multiple testing. However, for methylation trajectory groups not adjusted for CTH, suggestive associations were identified between cg18149657 and poor GOS and mRS at 3 months (p = 0.003 and p = 0.04, respectively) and death at 3 months (p = 0.04), and between cg26283059 and DCI (p = 0.01). For methylation trajectory groups adjusted for CTH, suggestive associations were identified between cg02131995 and good mRS at 12 months (p = 0.02), and between cg26283059 and DCI (p = 0.01). CONCLUSIONS: This exploratory pilot study offers preliminary evidence that HAMP may play a role in patient outcomes after aSAH. Replication of this study and mechanistic investigation of the role of HAMP in patient outcomes after aSAH are needed.


Subject(s)
Brain Ischemia/genetics , DNA Methylation/genetics , Hepcidins/genetics , Subarachnoid Hemorrhage/genetics , Vasospasm, Intracranial/genetics , Adult , Aged , Brain Ischemia/etiology , Brain Ischemia/physiopathology , Disease Progression , Female , Functional Status , Glasgow Outcome Scale , Humans , Longitudinal Studies , Male , Middle Aged , Pilot Projects , Polymorphism, Single Nucleotide , Prognosis , Subarachnoid Hemorrhage/complications , Subarachnoid Hemorrhage/physiopathology , Subarachnoid Hemorrhage/therapy , Vasospasm, Intracranial/etiology , Vasospasm, Intracranial/physiopathology
11.
Psychooncology ; 29(3): 507-516, 2020 03.
Article in English | MEDLINE | ID: mdl-31733024

ABSTRACT

OBJECTIVE: Survivors of multiple primary cancers (MPC) are at increased risk for poor health outcomes compared with survivors of single cancers. Using an adapted psychobehavioral stress-response model, the study purpose was to identify pathways and individual risk factors associated with poor health outcomes in adults with MPC. METHODS: Adult MPC survivors (N = 211) with first cancers (stages I-III) diagnosed within 1 to 10 years were recruited via tumor registry. Employing a cross-sectional design, established questionnaires were used to operationalize patient characteristics and theoretical constructs including perceived stress, psychological and behavioral responses, financial hardship, social role function, and physical health. Disease and treatment data were obtained via registry and medical records. Structural equation modeling (SEM) was performed to fit, test, and modify the hypothesized psychobehavioral model. RESULTS: Following measurement model refinement, an SEM linking self-management behaviors, distress, financial hardship, and functional health demonstrated a good fit: χ2 (200, N = 206) = 332.06, P < .01; Tucker-Lewis index (TLI) = .95, comparative fit index (CFI) = .96, standardized root mean residual (SRMR) = .06, root-mean-square error of approximation (RMSEA) = .06. Less use of self-management behaviors predicted higher distress which, in turn, predicted higher financial hardship; higher distress and financial hardship predicted poorer functional health. Several sociodemographic and personal factors predicted self-management behaviors and distress. CONCLUSIONS: The hypothesized stress-response model was partially supported. Data supported pathways among self-management behaviors, distress, financial hardship, and functional health. Self-management and distress may represent modifiable intervention targets for MPC survivors. High body mass index (BMI), less education, greater neuroticism, and lower social support were associated with less use of self-management behaviors and higher distress and should be further evaluated as potential markers of vulnerability.


Subject(s)
Cancer Survivors/psychology , Health Behavior , Neoplasms, Multiple Primary/psychology , Social Support , Stress, Psychological/psychology , Adult , Body Mass Index , Cross-Sectional Studies , Female , Health Status , Humans , Male , Middle Aged , Risk Factors , Self-Management , Socioeconomic Factors , Surveys and Questionnaires
12.
J Nurs Meas ; 27(2): 162-176, 2019 08 01.
Article in English | MEDLINE | ID: mdl-31511403

ABSTRACT

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.


Subject(s)
Adaptation, Psychological , Brain Neoplasms/nursing , Caregivers/psychology , Family/psychology , Health Services Needs and Demand , Psychometrics/methods , Stress, Psychological/psychology , Adult , Female , Humans , Male , Middle Aged , Principal Component Analysis , Randomized Controlled Trials as Topic , Reproducibility of Results
13.
Intensive Crit Care Nurs ; 50: 95-102, 2019 Feb.
Article in English | MEDLINE | ID: mdl-29699912

ABSTRACT

OBJECTIVES: To describe preferences of intensive care patients' family members regarding the idea of an inpatient family-witnessed cardiopulmonary resuscitation. RESEARCH METHODOLOGY/DESIGN: A descriptive qualitative design was used in this study. Twelve family members of intensive care patients took part in individual semi-structured interviews. Data were analysed using thematic analysis. SETTING: A population of Finnish and Polish former intensive care adult patients' relatives. FINDINGS: The thematic analysis resulted in two main themes with four subthemes each: (Theme 1) Being more involved and engaged in patient's care in case of cardiopulmonary resuscitation, with subthemes: (a) Having an option to decide, (b) Being in physical proximity to the patient, (c) Feeling like having more control and impact and (d) Having a better idea about the situation. (Theme 2) Being cared for and treated respectfully during possible cardiopulmonary resuscitation, with subthemes: (a) Need for more support and understanding from the staff, (b) Uniqueness of the family - patient relationship, (c) Need for staff to be more humane and less mechanical and (d) Professional and highly qualified staff. CONCLUSION: Results of this study suggest a possible gap in family-centred care delivery in intensive care settings. System changes are necessary in order to increase nurses' awareness of patients' families' preferences, and successfully implement recommended family-witnessed cardiopulmonary resuscitation.


Subject(s)
Cardiopulmonary Resuscitation/methods , Family/psychology , Intensive Care Units/standards , Perception , Adult , Cardiopulmonary Resuscitation/psychology , Family Planning Policy , Female , Finland , Humans , Intensive Care Units/organization & administration , Male , Middle Aged , Poland , Qualitative Research
14.
Nurs Crit Care ; 23(3): 134-140, 2018 05.
Article in English | MEDLINE | ID: mdl-28391604

ABSTRACT

BACKGROUND: In-hospital, family-witnessed cardiopulmonary resuscitation of adults has been found to help patients' family members deal with the short- and long-term emotional consequences of resuscitation. Because of its benefits, many national and international nursing and medical organizations officially recommend this practice. Research, however, shows that family-witnessed resuscitation is not widely implemented in clinical practice, and health care professionals generally do not favour this recommendation. AIM: To describe and provide an initial basis for understanding health care professionals' views and perspectives regarding the implementation of an in-hospital, family-witnessed adult resuscitation practice in two European countries. STUDY DESIGN: An inductive qualitative approach was used in this study. METHODS: Finnish (n = 93) and Polish (n = 75) emergency and intensive care nurses and physicians provided written responses to queries regarding their personal observations, concerns and comments about in-hospital, family-witnessed resuscitation of an adult. Data were analysed using inductive thematic analysis. FINDINGS: The study analysis yielded five themes characterizing health care professionals' main concerns regarding family-witnessed resuscitation: (1) family's horror, (2) disturbed workflow (3) no support for the family, (4) staff preparation and (5) situation-based decision. CONCLUSION: Despite existing evidence revealing the positive influence of family-witnessed resuscitation on patients, relatives and cardiopulmonary resuscitation process, Finnish and Polish health care providers cited a number of personal and organizational barriers against this practice. The results of this study begin to examine reasons why family-witnessed resuscitation has not been widely implemented in practice. In order to successfully apply current evidence-based resuscitation guidelines, provider concerns need to be addressed through educational and organizational changes. RELEVANCE TO CLINICAL PRACTICE: This study identified important implementation barriers for allowing families in critical care settings to be present during resuscitation efforts. These results can be further used in developing and adjusting clinical practice policies, protocols and guidelines related to family-witnessed resuscitation.


Subject(s)
Attitude of Health Personnel , Cardiopulmonary Resuscitation/psychology , Family/psychology , Guidelines as Topic , Health Personnel/psychology , Adult , Decision Making , Europe , Finland , Humans , Organizational Innovation , Qualitative Research
15.
J Neurooncol ; 134(1): 157-167, 2017 Aug.
Article in English | MEDLINE | ID: mdl-28550505

ABSTRACT

Primary brain tumors (PBTs) are rare but have a great impact on both patient and family caregiver wellbeing. Supporting caregivers can help them to continue their caregiving activities to maintain the patients' best possible level of quality of life. Efforts to improve PBT caregiver wellbeing should take into account country- or culture-specific differences in care issues and supportive care needs to serve larger caregiver groups. We aimed to explore PBT caregivers' satisfaction with the current supportive care provision, as well as their thoughts on monitoring their care issues with both paper-based and digital instruments. Twelve PBT caregivers were interviewed in the United States. The semi-structured interviews were transcribed verbatim and analyzed by two coders independently. Data were combined with those collected in the Netherlands, following similar methodology (N = 15). We found that PBT caregivers utilize both formal and informal support services, but that those who experience more care issues would prefer more support, particularly in the early disease phase. Keeping track of care issues was thought to provide more insight into unmet needs and help them find professional help, but it requires investment of time and takes discipline. Caregivers preferred a brief and easy-to-use 'blended care' instrument that combines digital monitoring with personal feedback. The present study shows that the preferences of family caregivers in neuro-oncology toward keeping track of care issues are likely not heavily influenced by country- or culture-specific differences. The development of any instrument thus has the potential to benefit a large group of family caregivers.


Subject(s)
Brain Neoplasms/therapy , Caregivers/psychology , Quality of Life/psychology , Telemedicine/statistics & numerical data , Adult , Aged , Aged, 80 and over , Attitude to Health , Brain Neoplasms/psychology , Female , Humans , Male , Medical Oncology , Middle Aged , Netherlands/epidemiology
16.
Cancer ; 123(5): 832-840, 2017 03 01.
Article in English | MEDLINE | ID: mdl-27787881

ABSTRACT

BACKGROUND: Glioblastoma multiforme (GBM) is associated with a poor prognosis, and patients rely heavily on family caregivers for physical and emotional support. The capability and mental health of family caregivers may influence their ability to provide care and affect patient outcomes. The objective of the current study was to investigate whether caregivers' anxiety, depressive symptoms, burden, and mastery influenced survival in a sample of patients newly diagnosed with GBM. METHODS: Baseline data from caregiver-patient dyads participating in a longitudinal study funded by the National Institutes of Health were used. Cox regression analyses were performed to determine whether caregiver anxiety (Profile of Mood States-Anxiety), depressive symptoms (Center for Epidemiologic Studies-Depression Scale), burden (Caregiver Reaction Assessment), and feelings of mastery (Mastery Scale) predicted the survival time of patients with GBM after controlling for known covariates (patient age, Karnofsky performance status, type of surgery, and postsurgical treatment). RESULTS: A total of 88 caregiver-patient dyads were included. The median overall survival for the sample was 14.5 months (range, 0-88 months). After controlling for covariates, caregiver mastery was found to be predictive of patient survival. With each unit increase in mastery, there was a 16.1% risk reduction in patient death (95% confidence interval, 0.771-0.913; P<.001). CONCLUSIONS: To the authors' knowledge, the results of the current study are among the first to explore the impact of family caregiving on the outcomes of patients with GBM. If these results are supported in other studies, providing neuro-oncology caregivers with more structured support and guidance in clinical practice has the potential to improve caregivers' feelings of mastery, thereby influencing patients' well-being for the better. Cancer 2017;123:832-40. © 2016 American Cancer Society.


Subject(s)
Caregivers/psychology , Glioblastoma/epidemiology , Glioblastoma/psychology , Survival Rate , Adolescent , Adult , Aged , Anxiety/epidemiology , Anxiety/psychology , Cost of Illness , Depression/epidemiology , Depression/psychology , Female , Glioblastoma/pathology , Humans , Longitudinal Studies , Male , Middle Aged , Social Support
17.
Oncol Nurs Forum ; 43(6): 781-783, 2016 11 01.
Article in English | MEDLINE | ID: mdl-27768130

ABSTRACT

Illness representations are cognitive structures that individuals rely on to understand and explain their illnesses and associated symptoms. The Representational Approach (RA) to patient education offers a theoretically based, clinically useful model that can support oncology nurses to develop a shared understanding of patients' illness representations to collaboratively develop highly personalized plans for symptom management and other important self-management behaviors. This article discusses theoretical underpinnings, practical applications, challenges, and future directions for incorporating illness representations and the RA in clinical and research endeavors.


Subject(s)
Models, Educational , Oncology Nursing/standards , Patient Education as Topic , Self Care/standards , Humans
18.
J Neurosci Nurs ; 48(5): 260-8, 2016 Oct.
Article in English | MEDLINE | ID: mdl-27579960

ABSTRACT

BACKGROUND: Aneurysmal subarachnoid hemorrhage (aSAH) is a sudden debilitating condition affecting individuals during the most productive times of their lives. Treatment advances have reduced mortality rates but increased the number of survivors facing deficits in physical and neuropsychological function. OBJECTIVE: This study examined associations between neuropsychological function and work productivity after aSAH. METHODS: Fifty-two patients with aSAH, employed before hemorrhage, were recruited from an ongoing National Institutes of Health study. Work Limitations Questionnaire (WLQ), neuropsychological tests (executive function, psychomotor speed, attention and mental flexibility, memory), and Patient Assessment of Own Function were completed at 3 and 12 months after aSAH. RESULTS: Subjects in this analysis reported some level of difficulty in work productivity at 3 and 12 months (35% and 30%, respectively) after hemorrhage. Lower WLQ scores in time management and mental/interpersonal subscales were associated with poorer performance in psychomotor function (r = .5, p = .04 and r = .42, p = .09). Poorer mental flexibility and working memory correlated with time management difficulty at 3 months (r = -.4, p = .09 and r = .54, p = .02). Patients performing poorly on story recall tests were more likely to report difficulty with job physical performance (r = -.42, p = .09) and completing work effectively (r = .61, p = .009). Poorer working memory performance was associated with lower scores on mental/interpersonal WLQ subscales (r = .45, p = .05) and overall health-related work productivity loss (r = .47, p = .04). WLQ areas also correlated with participants' perception of their neuropsychological function after aSAH. CONCLUSIONS: These results suggest that neuropsychological deficits impact work quality after hemorrhage and provide strong impetus for future studies so that domain-specific interventions can be implemented to improve outcomes that affect quality of life including work productivity.


Subject(s)
Cognition Disorders/etiology , Employment/psychology , Intracranial Aneurysm/complications , Subarachnoid Hemorrhage , Adult , Aged , Cognition Disorders/psychology , Employment/standards , Executive Function , Female , Humans , Longitudinal Studies , Male , Memory , Middle Aged , Neuropsychological Tests/standards , Prospective Studies , Psychomotor Performance , Quality of Life , Surveys and Questionnaires
19.
J Neurooncol ; 128(1): 109-118, 2016 05.
Article in English | MEDLINE | ID: mdl-26907491

ABSTRACT

Prolonged periods of family caregiving can induce stress levels that may negatively influence caregiver health. However, the physiologic effect of psychological distress in oncology family caregivers has received little attention. Therefore we aimed to determine longitudinal profiles of inflammatory cytokines (IL-6 and IL-1ra) in neuro-oncology caregivers and identify associations between psychological distress and cytokine levels. Depressive symptoms, anxiety, caregiver burden and blood were collected from 108 adult caregivers at adult patients' diagnosis, 4-, 8-, and 12-months. Trajectory analyses of log transformed cytokine levels were performed. Multiple logistic regression analyses evaluated the impact of psychological distress on cytokine levels. For both cytokines, two distinct populations were identified, neither of which changed over time. High IL-1ra was associated with male caregivers with anxiety (OR = 1.7; 95 %CI 1.06-2.83) and obese caregivers (BMI = 40) who felt burdened due to disrupted schedules (OR = 1.3; 95 %CI 1.02-1.77). Conversely, caregivers with a healthy weight (BMI = 25) who felt burdened due to disrupted schedules were less likely to have high IL-1ra (OR = 0.71; 95 %CI 0.54-0.92). Caregivers ≤30 years old with lower self-esteem from caregiving were 1.16 times (95 %CI 1.04-1.30) more likely to have high IL-6. Analysis demonstrated groups of family caregivers with high and low levels of systemic inflammation and these levels did not change longitudinally over the care trajectory. Poor physical health in family caregivers may have a negative impact on the burden placed on the healthcare system in general and on the well-being of neuro-oncology patients in particular.


Subject(s)
Caregivers/psychology , Inflammation/epidemiology , Neoplasms/therapy , Adult , Age Factors , Anxiety/blood , Anxiety/complications , Anxiety/immunology , Biomarkers/blood , Cost of Illness , Depression/blood , Depression/complications , Depression/immunology , Female , Humans , Inflammation/blood , Inflammation/psychology , Interleukin 1 Receptor Antagonist Protein/blood , Interleukin-6/blood , Longitudinal Studies , Male , Middle Aged , Obesity/blood , Obesity/complications , Obesity/immunology , Obesity/psychology , Risk Factors , Self Concept , Sex Factors , Stress, Psychological/blood , Stress, Psychological/complications , Stress, Psychological/immunology , Time Factors
20.
CNS Oncol ; 5(1): 41-8, 2016.
Article in English | MEDLINE | ID: mdl-26675885

ABSTRACT

Vast research has underscored negative psychological and physical effects of providing care for someone with a chronic illness. Unfortunately, caregivers of persons with a primary malignant brain tumor have received very little attention in the research literature. The purpose of this article is to review what is known regarding descriptive and interventional work in neuro-oncology caregiving and to suggest avenues for future research. A total of 36 descriptive and six intervention studies were identified for this review. Increased distress in neuro-oncology caregivers has been linked to younger age; higher levels of economic burden and unmet needs; and lower levels of social support, spirituality and caregiver mastery. Intervention research suggests that educational programs and cognitive behavioral therapy may decrease neuro-oncology caregiver distress.


Subject(s)
Brain Neoplasms/nursing , Brain Neoplasms/psychology , Caregivers/psychology , Anxiety/etiology , Anxiety/psychology , Humans
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