How Is the Caregiver Doing? Capturing Caregivers' Experiences With a Reflective Toolkit.
Ontology highlight
ABSTRACT:
SUBMITTER: Bosch L
PROVIDER: S-EPMC6707576 | biostudies-literature | 2019 May
REPOSITORIES: biostudies-literature
Publications
How Is the Caregiver Doing? Capturing Caregivers' Experiences With a Reflective Toolkit.
Bosch Lilian L Kanis Marije M Dunn Julia J Stewart Kearsley A KA Kröse Ben B
JMIR mental health 20190528 5
<h4>Background</h4>This paper describes the Co-Care-KIT, a reflective toolkit designed to provide insights into the diverse experiences of home-based informal caregivers during the delivery of care to a relative or loved one.<h4>Objective</h4>The aim of this study was to evaluate the toolkit, including a custom-designed journal, tools for photography-based experience sampling, and heart rate tracking, which enables caregivers to collect and reflect on their positive and negative daily experience ...[more]
Similar Datasets
Project description:Background: Cognitive biases play an important role in the formation and maintenance of delusions. These biases are indicators of a weak reflective mind, or reduced engaging in reflective and deliberate reasoning. In three experiments, we tested whether a bias to accept non-sense statements as profound, treat metaphorical statements as literal, and suppress intuitive responses is related to psychotic-like experiences. Methods: We tested deliberate reasoning and psychotic-like experiences in the general population and in patients with a former psychotic episode. Deliberate reasoning was assessed with the bullshit receptivity scale, the ontological confabulation scale and the cognitive reflection test (CRT). We also measured algorithmic performance with the Berlin numeracy test and the wordsum test. Psychotic-like experiences were measured with the Community Assessment of Psychic Experience (CAPE-42) scale. Results: Psychotic-like experiences were positively correlated with a larger receptivity toward bullshit, more ontological confabulations, and also a lower score on the CRT but not with algorithmic task performance. In the patient group higher psychotic-like experiences significantly correlated with higher bullshit receptivity. Conclusion: Reduced deliberate reasoning may contribute to the formation of delusions, and be a general thinking bias largely independent of a person's general intelligence. Acceptance of bullshit may be facilitated the more positive symptoms a patient has, contributing to the maintenance of the delusions.
| S-EPMC5816266 | biostudies-literature
Project description:Essential tremor (ET) is a progressive neurological disease associated with functional disability, diminished quality of life and, in some individuals, poorer balance, cognitive impairment, depression and sleep dysregulation. Individuals with ET may rely on family members and friends to act as informal caregivers to assist with daily activities and provide emotional support. There is a high prevalence of embarrassment among individuals with ET, which may be a result of the outwardly visible nature of tremor. Studies in populations with outwardly visible disability have shown that perception by caregivers of a care-recipient's social distress can contribute to caregiver burden. We hypothesize that in ET, perception by caregivers of ET participant embarrassment is a predictor for caregiver burden. Data were collected from 57 ET participants and their caregivers. We measured ET participant embarrassment using the Essential Tremor Embarrassment Assessment (ETEA), and measured perception by caregivers of ET participant embarrassment using a modified version of the ETEA. The Zarit Burden Interview was used to measure caregiver burden. Perceived embarrassment was associated with ET participant embarrassment. In linear regression models, perceived embarrassment was a stronger predictor for caregiver burden than measures of ET participant cognitive and physical impairment. The results indicate that perception of ET participant embarrassment can be burdensome for caregivers. Clinicians may wish to address patient embarrassment and perceived embarrassment to better support caregivers and ET patients.
| S-EPMC5739080 | biostudies-other
Project description:BackgroundThe central line (CL) bundle interventions are important for preventing central line-associated bloodstream infections (CLABSIs), but a modeling method for testing the CL bundle interventions within a health systems framework is lacking.ObjectivesGuided by the Quality Health Outcomes Model (QHOM), this study tested the CL bundle interventions in reflective and composite, latent, variable measurement models to assess the impact of the modeling approaches on an investigation of the relationships between adherence to the CL bundle interventions, organizational context, and CLABSIs.MethodsA secondary data analysis study was conducted using data from 614 U.S. hospitals that participated in the Prevention of Nosocomial Infection and Cost-Effectiveness Refined study. The sample was randomly split into exploration and validation subsets.ResultsThe two CL bundle modeling approaches resulted in adequate fitting structural models (RMSEA = .04; CFI = .94) and supported similar relationships within the QHOM. Adherence to the CL bundle had a direct effect on organizational context (reflective = .23; composite = .20; p = .01) and CLABSIs (reflective = -.28; composite = -.25; p = .01). The relationship between context and CLABSIs was not significant. Both modeling methods resulted in partial support of the QHOM.DiscussionThere were little statistical, but large, conceptual differences between the reflective and composite modeling approaches. The empirical impact of the modeling approaches was inconclusive, for both models resulted in a good fit to the data. Lessons learned are presented. The comparison of modeling approaches is recommended when initially modeling variables that have never been modeled or with directional ambiguity to increase transparency and bring confidence to study findings.
| S-EPMC5010018 | biostudies-literature
Project description:BACKGROUND:Hymen reconstruction (HR) involves the restoration of the hymeneal membrane's gross anatomical integrity. Among the medical profession, hymen reconstruction receives particular attention and its necessity is debated because the surgery is not medically indicated, and often reveals conflicting social norms on virginity and marriageability between health professionals and their patients. The focus of this paper is not to address the many open questions that the ethics and politics around HR reveal, but rather aims at contributing to the much-needed empirical evidence. It presents findings of a study conducted in Belgium (Flanders region), among gynaecologists that aimed at assessing their knowledge, views, and experiences on hymen reconstruction. METHODS:A digital self-administered questionnaire-based survey was sent to Flemish gynaecologists and trainees in Flanders registered with the Flemish Society of Obstetrics and Gynaecology (VVOG). RESULTS:Hundred-and-nine questionnaires were completed. The majority of the respondents (73%) had requests to perform HR. Knowledge and technical skills about HR were considered to be sufficient (69%), even though HR does not seem to be integrated in medical curricula or post-graduate training. Most respondents (72%) would favour the publication of a guideline by their professional organisation. Few respondents discuss alternative options with the patient (19%) and half of the respondents reject to perform HR (49%). The majority of our respondents are against reimbursement of the surgery (70%). Not even half of our respondents believes that a patient is at risk of further violence (47%). 7% of the respondents mentioned complications, but the majority was able to perform a follow up consultation. CONCLUSIONS:The responses of this survey cannot be generalised to the entire population of gynaecologists in Flanders, but do provide insights in how gynaecologists confronted with HR are approaching such requests, and thus contributes to the empirical evidence. Our paper showed that many Flemish gynaecologist are likely to encounter requests for hymenoplasty, but that a majority would not perform the surgery. There seems to be a lack of guidance and debate in Flanders on the social and moral dimensions of HR, and a number of complexities were revealed when gynaecologists address HR that need further research.
| S-EPMC6001123 | biostudies-literature
Project description:IntroductionEarly clinical experiences can be overwhelming to medical students. The Professional Competencies ToolKit (ProComp ToolKit) gives medical students a framework on which to build these early experiences and reflect on issues related to professionalism as each patient encounter unfolds.MethodsThe ProComp ToolKit is a set of 28 flash cards, grouped within six domains of professional competency. Each flash card is a tool for learning, defining a topic in a catchy title and laying out a specific set of skills to be acquired within the clinical setting. Tasks and tips on each flash card guide students through the process of clinical observation, self-observation, and patient interactions. Students meet in small groups with facilitators every 2 weeks throughout the year to discuss these experiences. At the end of the year, students write a narrative based on the flash card that was most meaningful to their professional identity development.ResultsWe demonstrated how the student narratives that emerged from using the flash cards, exchanged in a small-group setting, led to group problem solving and validation of students' experiences and values. In the narratives, students discussed the origin of negative behaviors and attitudes that can become normalized in patient care while asserting the primacy of patient-centered care and devising self-awareness strategies.DiscussionOur experience using the ProComp ToolKit shows that teaching reflective practice can successfully be integrated into students' clinical experiences. Professionalism skills can be reflected upon such that they become habitual and integral to students' developing professional identities.
| S-EPMC6342359 | biostudies-literature
Project description:ImportanceCaregiver strain has been shown to be associated with adverse effects on caregivers' health, particularly among those with cardiovascular disease. Less is known about the association of caregiver strain with health behaviors among caregivers with diabetes, a disease that requires a high degree of self-care.ObjectiveTo examine the association between caregiver strain and diabetes self-care among caregivers with diabetes.Design, setting, and participantsThis cohort study was conducted between July 13, 2018, and June 25, 2020, using data on 795 US caregivers aged 45 years or older with self-reported diabetes from the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study, which comprised 30 239 Black and White adults 45 years or older throughout the US enrolled from January 2003 to October 2007.ExposuresCaregiver strain, assessed by self-report in response to the question, "How much of a mental or emotional strain is it to provide this care?" Response options were no strain, some strain, or a lot of (high) strain.Main outcomes and measuresDiabetes self-care, which was assessed across 4 domains (Mediterranean diet adherence, physical activity, smoking status, and medication adherence), and a composite self-care score summing performance across these domains. The association between caregiver strain and diabetes self-care was examined with multivariable Poisson regression adjusting for demographic, clinical, physical and mental functioning, and caregiving covariates.ResultsAmong the 795 caregivers with diabetes included in the study, the mean (SD) age was 63.7 (8.6) years, 469 (59.0%) were women, and 452 (56.9%) were Black individuals. Overall, 146 caregivers (18.4%) reported high caregiver strain. In unadjusted models, high caregiver strain was associated with less physical activity (prevalence ratio [PR], 0.66; 95% CI, 0.45-0.97), low medication adherence (PR, 0.80; 95% CI, 0.68-0.94), and worse self-care (PR, 0.65; 95% CI, 0.44-0.98). In adjusted models, the association between some and high caregiving strain with low medication adherence remained significant (adjusted PR: some strain, 0.88 [95% CI, 0.78-0.99]; high strain, 0.83 [95% CI, 0.69-0.99]).Conclusions and relevanceIn this cohort study of US adult caregivers with diabetes, a high level of strain was associated with low medication adherence. Increased awareness of the prevalence of caregiver strain and potential ramifications on caregivers' self-care appears to be warranted among health care professionals and caregivers.
| S-EPMC7879235 | biostudies-literature
Project description:BACKGROUND:Informal caregivers are family members or close friends who provide unpaid help to individuals with acute or chronic health conditions so that they can manage daily life tasks. The greatest source of health information is the internet for meeting the needs of caregivers. However, information on the internet may not be scientifically valid, it may be written in language that is difficult to read, and is often in very large doses. 90Second Caregiver is a health letter whose aim is to disseminate knowledge to caregivers in a user-friendly, weekly format, in order to improve their wellbeing. OBJECTIVE:The main objective was to test a sample of 90Second Caregiver health letters in order to assess their usability and to optimize the design and content of the health letters. METHODS:Usability research themes were assessed using semi-structured phone interviews, incorporating the Think Aloud method with retrospective questioning. RESULTS:Usability was assessed in the context of five main themes: understandability and learnability, completeness, relevance, and quality and credibility of the health letter content, as well as design and format. Caregivers generally provided positive feedback regarding the usability of the letters. The usability feedback was used to refine 90Second Caregiver in order to improve the design and content of the series. Based on the results of this study, it may be of maximum benefit to target the series towards individuals who are new to caregiving or part-time caregivers, given that these caregivers of the sample found the letters more useful and relevant and had the most positive usability experiences. CONCLUSIONS:The findings assisted in the improvement of the 90Second Caregiver template, which will be used to create future health letters and refine the letters that have already been created. The findings have implications for who the 90Second Caregiver series should be targeting (ie, newer or part-time caregivers) in order to be maximally impactful in improving mental health and wellbeing-related outcomes for caregivers, such as self-efficacy and caregiving knowledge. The results of this study may be generalizable to the examination of other electronic health information formats, making them valuable to future researchers testing the usability of health information products. In addition, the methods used in this study are useful for usability hypothesis generation. Lastly, our 90Second delivery approach can generate information useful for a set of similar products (eg, weekly health letters targeted towards other conditions/populations).
| S-EPMC7055838 | biostudies-literature
Project description:BackgroundCoping strategies play a key role in modulating the physical and psychological burden on caregivers of stroke patients. The present study aimed to determine the relationship between the severity of burden of care and coping strategies amongst a sample of Iranian caregivers of older stroke patients. It also aimed to examine the differences of coping strategies used by male and female caregivers.MethodsA total of 110 caregivers of older patients who previously had a stroke participated in this descriptive and cross-sectional study. The Zarit Burden Interview and Lazarus coping strategies questionnaires were used for data collection. Questionnaires were completed by the caregivers, who were selected using convenience sampling. The collected data were analyzed using Pearson's correlations and independent t-tests.ResultsThe mean age of participants was 32.09 ± 8.70 years. The majority of the caregivers sampled reported mild to moderate (n = 74, 67.3%) burden. The most commonly used coping strategies reported were positive reappraisal and seeking social support. Results of the independent t-test showed that male caregivers used the positive reappraisal strategy (t(110) = 2.76; p = 0.007) and accepting responsibility (t(110) = 2.26; p = 0.026) significantly more than female caregivers. Pearson's correlations showed a significant positive correlation between caregiver burden and emotional-focused strategies, including escaping (r = 0.245, p = 0.010) and distancing (r = 0.204, p = 0.032).ConclusionsCaregivers with higher burden of care used more negative coping strategies, such as escape-avoidance and distancing. In order to encourage caregivers to utilize effective coping skills, appropriate programs should be designed and implemented to support caregivers. Use of effective coping skills to reduce the level of personal burden can improve caregiver physical health and psychological well-being.
| S-EPMC8017750 | biostudies-literature
Project description:The United States (US) has been at war for almost two decades, resulting in a high prevalence of injuries and illnesses in service members and veterans. Family members and friends are frequently becoming the caregivers of service members and veterans who require long-term assistance for their medical conditions. There is a significant body of research regarding the physical, emotional, and social toll of caregiving and the associated adverse health-related outcomes. Despite strong evidence of the emotional toll and associated mental health conditions in family caregivers, the literature regarding suicidal ideation among family caregivers is scarce and even less is known about suicidal ideation in military caregivers. This study sought to identify clusters of characteristics and health factors (phenotypes) associated with suicidal ideation in a sample of military caregivers using a cross-sectional, web-based survey. Measures included the context of caregiving, physical, emotional, social health, and health history of caregivers. Military caregivers in this sample (n = 458) were mostly young adults (M = 39.8, SD = 9.9), caring for complex medical conditions for five or more years. They reported high symptomology on measures of pain, depression, and stress. Many (39%) experienced interruptions in their education and 23.6% reported suicidal ideation since becoming a caregiver. General latent variable analyses revealed three distinct classes or phenotypes (low, medium, high) associated with suicidality. Individuals in the high suicidality phenotype were significantly more likely to have interrupted their education due to caregiving and live closer (within 25 miles) to a VA medical center. This study indicates that interruption of life events, loss of self, and caring for a veteran with mental health conditions/suicidality are significant predictors of suicidality in military caregivers. Future research should examine caregiver life experiences in more detail to determine the feasibility of developing effective interventions to mitigate suicide-related risk for military caregivers.
| S-EPMC8195409 | biostudies-literature
Project description:ObjectiveThis scoping review aims to investigate the available literature on the lived experiences of doing a PhD in African Universities.IntroductionThe continent of Africa still contributes a minimal amount of research towards global research outputs. The need for increased research capacity and outputs have been identified as priority for growth and development. There is a substantial need for evidence-based solutions that can alleviate some of these complexities. For example, challenges still exist in the disease burden faced, economic poverty and lack of infrastructure in various contexts.Methods and analysisMultiple databases will be searched, including the EBSCO Host, Scopus, EMBASE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline (Ovid), and Google Scholar. The scoping review will be conducted using the Arksey & O'Malley (2005)'s six-step approach in conjunction with the Joanna Briggs Institute (JBI) methodology for scoping reviews. Studies that examined the perspective of PhD (Doctor of Philosophy) candidates, supervisors from Africa, and research studies focusing on the common barriers and facilitators concerning research in Africa will be included. Studies that explore the perspectives of other postgraduate cohorts will be excluded.Ethics and disseminationEthics application will not be required but findings will be disseminated through publications, conference presentation, policy, and relevant stakeholders.Review registration numberThis study has been registered with the Open Science Forum (OSF).
| S-EPMC10482273 | biostudies-literature