ABSTRACT
PURPOSE: The diagnosis of a primary brain tumor (PBT) causes significant distress for the caregiver-patient dyad, warranting increased supportive care intervention. Although researchers have previously assessed caregivers' perceptions of their own supportive care needs, no study to date has identified how patients perceive the caregiving experience and/or patients' recommendations for integrating supportive care of caregivers in neuro-oncology. This qualitative study examined caregiver distress as well as caregiver supportive care needs from the patients' perspective to inform future intervention development. METHODS: Adults with PBT (N = 15; Mage = 45; 53% female; 93% White) were divided into four, 90-min focus groups moderated by a clinical neuropsychologist. Patients responded to semi-structured interview questions regarding various supportive care needs throughout the course of disease. Each discussion was transcribed and coded using thematic content analysis and NVivo software. Inter-rater reliability was excellent (MKappa = 0.92, range = 0.85-0.93). RESULTS: Seven distinct codes related to PBT caregivers emerged and were classified into two broader themes: Caregiver Impact (47% of coded content) and Caregiver Support (53% of coded content). Caregiver Impact refers to patients' perspective of the practical and emotional demands of caregiving. Under Caregiver Support, patients cited a strong need for increased support of caregivers, including bereavement care, individual psychotherapy, and joint caregiver-patient dyad sessions. CONCLUSION: Patients with PBT expressed profound concerns regarding the demands of caregiving and its impact on the well-being of their loved ones. Findings emphasize the need for comprehensive dyadic support in neuro-oncology throughout the disease trajectory to enhance the overall quality-of-life for both patients and their caregivers.
Subject(s)
Brain Neoplasms , Caregivers , Focus Groups , Qualitative Research , Social Support , Humans , Caregivers/psychology , Female , Male , Brain Neoplasms/psychology , Middle Aged , Adult , Aged , Stress, Psychological/etiologyABSTRACT
BACKGROUND: Opportunities for care improvement exist within virtual care, which continues to emerge as an increasingly viable heath care option. PROBLEM: Competing care priorities presented a challenge to nurse leaders, resulting in a modern solution to optimize resources using virtual care. METHODS: A new model of care delivery, the virtual discharge (VDC) protocol, was established as a partnership between bedside nurses and a virtual nurse team. INTERVENTIONS: Using existing telehealth technology, virtual nurses delivered remote discharge education to patients on a 30-bed orthopedic unit. RESULTS: During the pilot, 269 VDC sessions totaled more than 101 hours of discharge education. Patient satisfaction communication scores improved significantly, and patients maintained a low 7-day readmission rate. CONCLUSION: This care model using emerging technology to deliver effective discharge education was highly satisfactory for patients and bedside nurses. Nurse leaders should seek opportunities to maximize the benefits of virtual technology in health care.
Subject(s)
Delivery of Health Care , Patient Discharge , Humans , CommunicationABSTRACT
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 useABSTRACT
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 LifeABSTRACT
AIM: The aim of this study was to determine what kind of psychosocial interventions aimed at improving the well-being of adult cancer patient caregivers were developed, and to describe the methodological characteristics and clinical effectiveness of the interventions which could be included in the nursing care plans. DESIGN: Systematic review DATA SOURCES: A systematic search of three databases (PubMed, CINAHL, and PsycINFO) was conducted to identify peer-reviewed papers published between years 2004-2019. REVIEW METHODS: The review was guided by the Joanna Briggs Institute manual for systematic reviews. Data were extracted and appraised by three reviewers using standardized checklists. Narrative synthesis was used to analyse the data. RESULTS: A total of 37 studies underwent analysis. Most of the studies described psychoeducational interventions, designed for patient-caregiver dyads, delivered face-to-face. There was a great variety in caregiver outcomes and measurement tools used. Even though most studies used a randomized controlled design and standardized intervention protocols, many reported problems with recruitment and attrition. Most studies reported that the intervention improved caregiver outcomes, yet the majority of them failed to report effect sizes. CONCLUSION: There are currently a plethora of successful interventions available for cancer patient caregivers which can be included to the nursing care plan. Psychoeducational online interventions which include a social support component may have the best potential in supporting caregivers. It is important to address specific caregiver needs at different cancer stages rather than general needs of caregivers in future interventions. IMPACT: This review suggests that despite a large number of different interventions which can be included in the nursing care plan to improve the support offered to caregivers, some issues should be addressed while designing an intervention study. The emphasis should be placed on reporting effect sizes, focusing on specific caregiver needs and improving recruitment, retention strategies and sustainability of caregiver interventions.
Subject(s)
Caregivers , Neoplasms , Adult , Caregivers/psychology , Humans , Psychosocial Support Systems , Randomized Controlled Trials as Topic , Social SupportABSTRACT
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/psychologyABSTRACT
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 QuestionnairesABSTRACT
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/physiopathologyABSTRACT
BACKGROUND: The diagnosis and treatment of a brain or spinal cord tumour can have a huge impact on the lives of patients and their families with family caregiving often resulting in considerable burden and distress. Meeting the support needs of family caregivers is critical to maintain their emotional and physical health. Although support for caregivers is becoming more widely available, large-scale implementation is hindered by a lack of high-quality evidence for its effectiveness in the neuro-oncology caregiver population. OBJECTIVES: To assess the effectiveness of supportive interventions at improving the well-being of caregivers of people with a brain or spinal cord tumour. To assess the effects of supportive interventions for caregivers in improving the physical and emotional well-being of people with a brain or spinal cord tumour and to evaluate the health economic benefits of supportive interventions for caregivers. SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL; 2018, Issue 7), MEDLINE via Ovid, and Embase via Ovid. We also handsearched relevant published conference abstracts (previous five years), publications in the two main journals in the field (previous year), searched for ongoing trials via ClinicalTrials.gov, and contacted research groups in the field. The initial search was in March 2017 with an update in August 2018 (handsearches completed in January 2019). SELECTION CRITERIA: We included all randomised controlled trials (RCTs) where caregivers of neuro-oncology patients constituted more than 20% of the sample and which evaluated changes in caregiver well-being following any supportive intervention. DATA COLLECTION AND ANALYSIS: Two review authors independently selected studies and carried out risk of bias assessments. We aimed to extract data on the outcomes of psychological distress, burden, mastery, quality of patient-caregiver relationship, quality of life, and physical functioning. MAIN RESULTS: In total, the search identified 2102 records, of which we reviewed 144 in full text. We included eight studies. Four interventions focused on patient-caregiver dyads and four were aimed specifically at the caregiver. Heterogeneity of populations and methodologies precluded meta-analysis. Risk of bias varied, and all studies included only small numbers of neuro-oncology caregivers (13 to 56 participants). There was some evidence for positive effects of caregiver support on psychological distress, mastery, and quality of life (low to very low certainty of evidence). No studies reported significant effects on caregiver burden or quality of patient-caregiver relationship (low to very low certainty of evidence). None of the studies assessed caregiver physical functioning. For secondary outcomes (patient emotional or physical well-being; health economic effects), we found very little to no evidence for the effectiveness of caregiver support. We identified five ongoing trials. AUTHORS' CONCLUSIONS: The eight small-scale studies included employed different methodologies across different populations, with low certainty of evidence overall. It is not currently possible to draw reliable conclusions regarding the effectiveness of supportive interventions aimed at improving neuro-oncology caregiver well-being. More high-quality research is needed on support for family caregivers of people diagnosed, and living, with a brain or spinal cord tumour.
Subject(s)
Adaptation, Psychological , Caregivers/psychology , Quality of Life , Stress, Psychological/prevention & control , Terminal Care/psychology , Brain Neoplasms/psychology , Family/psychology , Friends/psychology , Humans , Randomized Controlled Trials as Topic , Social Support , Spinal Cord Neoplasms/psychologyABSTRACT
Purpose Ability to return to work (RTW) after stroke has been shown to have positive psychosocial benefits on survivors. Although one-fifth of aneurysmal subarachnoid hemorrhage (aSAH) survivors suffer from poor psychosocial outcomes, the relationship between such outcomes and RTW post-stroke is not clear. This project explores the relationship between age, gender, race, marital status, anxiety and depression and RTW 3 and 12 months post-aSAH. Methods Demographic and clinical variables were collected from the electronic medical record at the time of aSAH admission. Anxiety and depression were assessed at 3 and 12 months post-aSAH using the State Trait Anxiety Inventory (STAI) and Beck's Depression Inventory-II (BDI-II) in 121 subjects. RTW for previously employed patients was dichotomized into yes/no at their 3 or 12 month follow-up appointment. Results Older age was significantly associated with failure to RTW at 3 and 12 months post-aSAH (p = 0.003 and 0.011, respectively). Female gender showed a trending but nonsignificant relationship with RTW at 12 months (p = 0.081). High scores of depression, State anxiety, and Trait anxiety all had significant associations with failure to RTW 12 months post-aSAH (0.007 ≤ p ≤ 0.048). At 3 months, there was a significant interaction between older age and high State or Trait anxiety with failure to RTW 12 months post-aSAH (p = 0.025, 0.042 respectively). Conclusions Patients who are older and suffer from poor psychological outcomes are at an increased risk of failing to RTW 1-year post-aSAH. Our interactive results give us information about which patients should be streamlined for therapy to target their psychosocial needs.
Subject(s)
Anxiety/psychology , Depression/psychology , Return to Work/statistics & numerical data , Subarachnoid Hemorrhage/psychology , Adult , Age Factors , Anxiety/complications , Anxiety/diagnosis , Depression/complications , Depression/diagnosis , Female , Humans , Male , Middle Aged , Psychiatric Status Rating Scales , Return to Work/psychology , Subarachnoid Hemorrhage/complications , Subarachnoid Hemorrhage/rehabilitationABSTRACT
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.
Subject(s)
Brain Neoplasms/nursing , Caregivers/psychology , Cost of Illness , Social Support , Adaptation, Psychological , Aged , Anxiety/psychology , Brain Neoplasms/psychology , Depression/psychology , Female , Humans , Male , Middle Aged , Quality of Life/psychology , Surveys and QuestionnairesABSTRACT
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 ResearchABSTRACT
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 SupportABSTRACT
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/epidemiologyABSTRACT
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 FactorsABSTRACT
AIMS: The epidemiological aim was to draw a general picture of spatial patterns of diseases, socio-demographics, and land use in Finland to detect possible under-recognized associations between the patterns. The methodological purpose was to compare and combine two statistical techniques to approach the data from different viewpoints. METHODS: Two different statistical methods, the self-organizing map and principal coordinates of neighbor matrices with variation partitioning, were used to search for spatial patterns of 15 non-infectious diseases and 17 direct or indirect risk factors. The dataset was gathered from five Finnish registries and pooled over the years 1991-2010. The statistical unit in the analyses was a municipality (n=303). RESULTS: Variables referring to urban living were related to low incidences of all other diseases but cancer, whereas variables referring to rural living were related to low incidences of cancer and high incidences of other diseases, especially coronary heart disease (CHD), hypertension, diabetes, asthma/chronic obstructive pulmonary disease, and serious mental illnesses at the municipal level. The relationships between diseases other than cancer and risk factors related to socio-demographics and land use variables were stronger than those between cancer and risk factors. CONCLUSIONS: The structuration of spatial patterns was dominated by CHD together with land use features and unemployment rate. The relationship between unemployment and spatial health inequalities was emphasized. On the basis of the present study, it is suggested that large heterogeneous datasets are clustered and analyzed simultaneously with more than one statistical method to recognize the most significant and generalizable results.
Subject(s)
Conservation of Natural Resources/statistics & numerical data , Epidemiology/statistics & numerical data , Health Status Disparities , Rural Health/statistics & numerical data , Spatial Analysis , Unemployment/statistics & numerical data , Urban Health/statistics & numerical data , Aged , Asthma/epidemiology , Coronary Disease/epidemiology , Diabetes Mellitus/epidemiology , Female , Finland/epidemiology , Geography, Medical , Humans , Hypertension/epidemiology , Incidence , Male , Mental Disorders/epidemiology , Neoplasms/epidemiology , Pulmonary Disease, Chronic Obstructive/epidemiology , Registries , Risk FactorsABSTRACT
AIMS: To examine factors associated with healthcare professionals' experiences and attitudes towards adult family-witnessed resuscitation in the emergency and intensive care units. BACKGROUND: Family-witnessed resuscitation offers the option for patients' families to be present during in-hospital resuscitation. It is important to understand healthcare professionals' views about this practice to determine why, despite its benefits and general recommendation, this practice has not been widely implemented. DESIGN: A descriptive, correlational, cross-sectional survey. METHODS: A total of 390 Finnish and Polish Registered Nurses and physicians from six university hospitals took part in the study. A structured questionnaire that examined nurses' and physicians' experiences and attitudes was used. Data, collected between July-December 2013, were analysed with descriptive statistics, logistic and multiple linear regression analyses. RESULTS: The results indicated that healthcare professionals are not well experienced in family-witnessed resuscitation. The general attitude towards this practice is somewhat negative. Physicians seem more confident about overcoming process-related barriers than nurses. Having previous positive experiences of family-witnessed resuscitation was associated with a more positive attitude towards this practice. Consequently a previous negative experience was associated with more negative attitudes. CONCLUSION: Family-witnessed resuscitation awareness should be increased in daily clinical practice. It is important to find a way to improve experiences and attitudes of healthcare professionals related to this phenomenon. Furthermore, developing local guidelines and multidisciplinary training plans is needed to respond to the needs of patients and their families.
Subject(s)
Attitude of Health Personnel , Cardiopulmonary Resuscitation/psychology , Adult , Aged , Critical Care , Cross-Sectional Studies , Emergency Service, Hospital , Family , Female , Humans , Male , Middle Aged , Professional-Family RelationsABSTRACT
BACKGROUND: Epidemiology and ecology share many fundamental research questions. Here we describe how principal coordinates of neighbor matrices (PCNM), a method from spatial ecology, can be applied to spatial epidemiology. PCNM is based on geographical distances among sites and can be applied to any set of sites providing a good coverage of a study area. In the present study, PCNM eigenvectors corresponding to positive autocorrelation were used as explanatory variables in linear regressions to model incidences of eight most common cancer types in Finnish municipalities (n = 320). The dataset was provided by the Finnish Cancer Registry and it included altogether 615,839 cases between 1953 and 2010. RESULTS: PCNM resulted in 165 vectors with a positive eigenvalue. The first PCNM vector corresponded to the wavelength of hundreds of kilometers as it contrasted two main subareas so that municipalities located in southwestern Finland had the highest positive site scores and those located in midwestern Finland had the highest negative scores in that vector. Correspondingly, the 165(th) PCNM vector indicated variation mainly between the two small municipalities located in South Finland. The vectors explained 13 - 58% of the spatial variation in cancer incidences. The number of outliers having standardized residual > |3| was very low, one to six per model, and even lower, zero to two per model, according to Chauvenet's criterion. The spatial variation of prostate cancer was best captured (adjusted r (2) = 0.579). CONCLUSIONS: PCNM can act as a complementary method to causal modeling to achieve a better understanding of the spatial structure of both the response and explanatory variables, and to assess the spatial importance of unmeasured explanatory factors. PCNM vectors can be used as proxies for demographics and causative agents to deal with autocorrelation, multicollinearity, and confounding variables. PCNM may help to extend spatial epidemiology to areas with limited availability of registers, improve cost-effectiveness, and aid in identifying unknown causative agents, and predict future trends in disease distributions and incidences. A large advantage of using PCNM is that it can create statistically valid reflectors of real predictors for disease incidence models with only little resources and background information.
ABSTRACT
BACKGROUND: To some extent, results always depend on the methods used, and the complete picture of the phenomenon of interest can be drawn only by combining results of different data processing techniques. This emphasizes the use of a wide arsenal of methods for processing and analyzing patient satisfaction surveys. OBJECTIVE: The purpose of this study was to introduce the self-organizing map (SOM) to nursing science and to illustrate the use of the SOM with patient satisfaction data. The SOM is a widely used artificial neural network suitable for clustering and exploring all kind of data sets. METHODS: The study was partly a secondary analysis of data collected for the Attractive and Safe Hospital Study from four Finnish hospitals in 2008 and 2010 using the Revised Humane Caring Scale. The sample consisted of 5,283 adult patients. The SOM was used to cluster the data set according to (a) respondents and (b) questionnaire items. The SOM was also used as a preprocessor for multinomial logistic regression. An analysis of missing data was carried out to improve the data interpretation. RESULTS: Combining results of the two SOMs and the logistic regression revealed associations between the level of satisfaction, different components of satisfaction, and item nonresponse. The common conception that the relationship between patient satisfaction and age is positive may partly be due to positive association between the tendency of item nonresponse and age. DISCUSSION: The SOM proved to be a useful method for clustering a questionnaire data set even when the data set was low dimensional per se. Inclusion of empty responses in analyses may help to detect possible misleading noncausative relationships.