ABSTRACT
BACKGROUND: Disturbed sleep is frequently identified in adult patients with cancer and their caregivers, with detrimental impact on physical health. Less known is the extent to which self-reported and actigraph-measured sleep patterns are similar between patients and their sleep-partner caregivers, and how these different modes of sleep measurements are related to physical health. METHODS: Patients diagnosed with colorectal cancer and their sleep-partner caregivers (81 dyads) completed a questionnaire for physical functioning and collected saliva samples for seven consecutive days, from which cortisol slope was quantified. Additionally, participants completed a daily sleep diary and wore actigraph for 14 consecutive days, from which sleep duration, sleep onset latency (SOL), and duration of wake after sleep onset (WASO) were calculated. RESULTS: Participants reported sleep patterns that fell within or close to the optimal range, which were similar between patients and their caregivers. Self-reported and actigraph-measured sleep duration had moderate levels of agreement (ICC = 0.604), whereas SOL and WASO had poor agreement (ICC = 0.269). Among patients, longer self-reported WASO was associated with poorer physical health and flatter cortisol slope (p ≤ 0.013). Among caregivers, longer self-reported SOL was associated with poorer physical functioning, actigraph-measured WASO was associated with steeper cortisol slope, and longer self-reported sleep markers studied than actigraph-measured were associated with poorer physical functioning (p ≤ 0.042). CONCLUSION: Findings suggest that employing multiple assessment modes for sleep and physical health is vital for comprehensive understanding of sleep health. Furthermore, when addressing patients' sleep health, it may be beneficial to include their sleep-partner caregivers who may experience similar disturbed sleep.
Subject(s)
Actigraphy , Caregivers , Colorectal Neoplasms , Hydrocortisone , Saliva , Self Report , Sleep , Humans , Caregivers/psychology , Male , Female , Colorectal Neoplasms/psychology , Middle Aged , Aged , Hydrocortisone/analysis , Hydrocortisone/metabolism , Sleep/physiology , Saliva/chemistry , Surveys and Questionnaires , Health Status , Adult , Sleep Wake Disorders/psychology , Diaries as Topic , Sleep QualityABSTRACT
Recovery from work is highly relevant for employees, yet understanding the interpersonal antecedents of impaired recovery experiences remains unclear. Specifically, because former research neglected supervisor behaviors as a predictor of impaired recovery and abusive supervision is a core stressor, we examine daily abusive supervision as a predictor of subordinates' recovery experiences (i.e., psychological detachment and relaxation). We draw on research on the recovery paradox and propose that psychological detachment and relaxation will be impaired on days with high abusive supervision, although recovery would have been highly important on those days. We suggest a cognitive mechanism (via rumination) and an affective mechanism (via anger) to explain this paradox. We test coworker reappraisal support as a moderator that buffers the adverse effects of abusive supervision on rumination and anger. In a daily diary study (171 subordinates, 786 days), we found an indirect effect of abusive supervision on psychological detachment via rumination and indirect effects of abusive supervision on psychological detachment and relaxation via anger. Coworker reappraisal support moderated the association of abusive supervision and rumination, such that the relationship was weaker when coworker support was high. Our results suggest that including negative supervisor behaviors, such as abusive supervision, in recovery research is highly relevant. Coworkers can help cognitively process abusive-supervision experiences by providing reappraisal support. (PsycInfo Database Record (c) 2024 APA, all rights reserved).
Subject(s)
Diaries as Topic , Relaxation , Humans , Female , Male , Adult , Middle Aged , Relaxation/psychology , Anger , Workplace/psychology , Occupational Stress/psychologyABSTRACT
The use of diaries is known to reduce post-intensive care syndrome in the intensive care unit (ICU) for survivors and families. Studies are needed to explore nurses' experience with diaries. Although the diaries are written for the patient, the diary entries may be helpful for the nurse as well. Research has shown that ICU diaries fill in significant memory gaps and aid in the resolution of delusional memories. However, there is a shortage of knowledge about the nurses' experience of writing caring notes in diaries. The purpose of this research was to explore the extracorporeal membrane oxygenation (ECMO) nurses' experience of writing caring notes in diaries during the patients' ICU stay. This is a descriptive phenomenological qualitative research study using semi-structured interviews. A one-on-one interview was performed, audiotaped, and transcribed. Three investigators analyzed the data for themes, subcategories, and indicators. A purposive sample of 15 specialty-trained ECMO nurses participated in the study. Three themes emerged from the study relating to the nurse, family, and patient, including positive and negative aspects of writing in the diary and barriers. The vast majority (88%) of 340 comments answered during the interviews were positive. Overall, nurses found the diaries to be beneficial to the nurse, family, and patient. Diary writing may help nurses get back to the core of why we do what they do. Understanding the nurses' experience may help to improve communication and family satisfaction while optimizing dairy programs.
Subject(s)
Extracorporeal Membrane Oxygenation , Qualitative Research , Writing , Humans , Female , Adult , Male , Intensive Care Units , Critical Care Nursing , Diaries as Topic , Middle Aged , Interviews as Topic , Attitude of Health PersonnelABSTRACT
Because social anxiety and depression commonly co-occur, it can be challenging to disentangle the emotional and motivational features of these conditions in everyday life contexts. In this daily diary study, we sought to understand the interplay between daily social anxiety and depression symptoms and emotion and motivation, determining whether daily symptoms are independently linked with positive affect, negative affect, and social motivation (desire to approach or to withdraw from others). Community-dwelling adults (Nâ¯=â¯269) with a wide range of social anxiety and depression symptoms completed daily assessments for 14 consecutive days (a total of 2,986 daily surveys). Within-person analyses found that increases in social anxiety and depression symptoms were uniquely associated with elevated negative affect; only increases in depression symptoms were associated with diminished positive affect. Increases in social anxiety symptoms were associated with an elevated desire to approach others but not a desire to withdraw from others. By contrast, increases in depression symptoms were associated with a diminished desire to approach others and an elevated desire to withdraw from others. Desire for social connection may distinguish social anxiety from depression. Examining patterns of daily social motivation may enhance clinicians' ability to differentiate the difficulties that arise from social anxiety from those that arise from depression.
Subject(s)
Anxiety , Depression , Motivation , Humans , Female , Male , Adult , Depression/psychology , Depression/diagnosis , Middle Aged , Anxiety/psychology , Anxiety/diagnosis , Social Behavior , Young Adult , Aged , Affect , Diaries as Topic , Emotions , AdolescentABSTRACT
BACKGROUND: The Hispanic and Latinx community is disproportionately affected by Alzheimer disease and related dementias (ADRDs). In the United States, approximately 8.5 million caregivers of individuals with ADRDs identify as Hispanic and Latinx people, and caregiving-related stress and burden place caregivers at elevated risk for poor mental health outcomes, as well as loneliness and social isolation. To date, there is limited knowledge about the daily stress experiences of Hispanic and Latinx caregivers. Given this knowledge gap, it is critical to examine how personal, cultural, and contextual factors influence daily stress, mental health, and resilience over time among Hispanic and Latinx ADRD caregivers. OBJECTIVE: The goal of this protocol report is to present the rationale, methodology, planned analytical strategy, progress completed to date, and implications of future findings for "Nuestros Días" (Spanish for "our days"), a fully remote daily diary (DD), observational cohort study examining the day-to-day experiences of Hispanic and Latinx ADRD caregivers. METHODS: The study will recruit a cohort of up to 500 Hispanic and Latinx caregivers of individuals living with ADRD. Participants will complete measures assessing contextual, individual-level, and cultural factors at 3 intervals (enrollment, 6 months, and 12 months). Each of the timepoints will be followed by 21 days of DD surveys to report on daily stress, stress moderators, and mental health variables. RESULTS: Data collection began in March 2023 and is projected to end in December 2026. As of March 2024, we have enrolled 60 caregivers in the Nuestros Días study, 78.9% (n=15) of whom are Spanish speakers. The current completion rate for DD surveys is 79.4%, averaging approximately 18 surveys out of 21 completed. We expect to enroll 10 to 15 participants per month moving forward to achieve our enrollment goal. CONCLUSIONS: Results from this study will identify which Hispanic and Latinx ADRD caregivers, and under what circumstances, appear to be at the greatest risk of experiencing poor mental health outcomes over time. This study represents a critical step forward in providing key guidance to develop effective, culturally sensitive interventions to support the health and well-being of Hispanic and Latinx ADRD caregivers, a historically underrepresented and underserved population in aging and caregiving research. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/55216.
Subject(s)
Caregivers , Dementia , Hispanic or Latino , Humans , Hispanic or Latino/psychology , Caregivers/psychology , Cohort Studies , Dementia/psychology , Dementia/ethnology , Female , Male , Stress, Psychological/psychology , Middle Aged , Aged , United States/epidemiology , Adult , Diaries as TopicABSTRACT
OBJECTIVES: The prevention school diary is distributed each year to children aged between 10 and 11 years old by La Ligue contre le cancer, a French association promoting prevention and research against cancer. While they write their homework in the diary, children can learn about a range of health determinants. This diary promotes health in a fun and educational way, as it integrates drawings made by children about the different themes covered by the diary. This paper aims to present the evaluability assessment of this intervention in Ile-de-France (Paris area), where it is already widely deployed. MATERIAL AND METHODS: We have traced the history of the prevention school diary and assessed how it is currently used in Ile-de-France by leading interviews with county committees of La Ligue contre le cancer. Successive versions of the diary and results of teacher satisfaction surveys were examined. All information collected was integrated into a logic model, which characterizes the main components, actors, and effects of the intervention. RESULTS: The prevention school diary was created in the West of France in the late 90s. It was then implemented in Paris and extended to other counties of Ile-de-France. Currently, six counties collaborate on the production of a common diary. Whereas it only dealt with tobacco consumption at the beginning, the prevention school diary now covers nutrition, physical activity, sun exposure, sleep and screen use, addiction, as well as safety in some counties. Three levels of intervention have been identified, depending on whether or not the distribution of the diary is followed by the production of drawings for the next edition or health education sessions. The expected effects of the prevention school diary have been integrated into a logic model emphasizing children, school, and family level. Outcomes include Capabilities (knowledge and skills), Opportunities, and Motivation to adopt healthy Behaviours, according to the theoretical model of behaviour change COM-B. CONCLUSION: The evaluability assessment phase enabled us to gain a better understanding of the conditions under which the intervention is deployed, and thus to identify the factors to be considered for a broad assessment of its effectiveness. It is especially important since the intervention is already well established in Ile-de-France.
Subject(s)
Health Promotion , Humans , Child , Health Promotion/methods , Male , Female , Schools , Neoplasms/prevention & control , France , School Health Services , Program Evaluation , Paris , Diaries as TopicABSTRACT
OBJECTIVES: Self-compassion has been identified as a psychological resource for aging well. To date, self-compassion among older adults has typically been conceptualized as a trait variable. This study examined whether day-to-day (state) variability in self-compassion was associated with negative affective reactivity to daily stressors. METHODS: Daily diary assessment methods were used to examine the potential moderating role of between- and within-person self-compassion on the relationship between daily stressors and negative affect. A community-based sample of 107 older adults aged 65+ completed questionnaires once daily over 14 days. RESULTS: Multilevel modeling revealed that 37% of the variance in self-compassion occurred within persons. Daily self-compassion moderated the relationship between daily stressor exposure and daily negative affect. On days with greater stressor exposure than usual, older adults showed less negative affective reactivity on days when self-compassion was higher, compared with days when self-compassion was lower. No moderating effects were observed for between-person (trait) self-compassion. DISCUSSION: These findings suggest that self-compassion in older adults should be conceptualized as both state and trait variables and that state self-compassion may be protective in the stress-reactivity pathway. Future research should investigate whether brief self-compassion interventions might help older adults to avoid or downregulate negative emotions in response to stressors.
Subject(s)
Affect , Empathy , Stress, Psychological , Humans , Aged , Male , Female , Stress, Psychological/psychology , Empathy/physiology , Affect/physiology , Aged, 80 and over , Self Concept , Aging/psychology , Aging/physiology , Diaries as Topic , Surveys and QuestionnairesABSTRACT
BACKGROUND: In the recent years, digital intensive care unit (ICU) diaries have emerged as more advantageous than paper diaries. Despite the advantages of digital diaries, the successful implementation and maintenance of this digital intervention present significant challenges in clinical practice. Therefore, understanding the facilitators and barriers among stakeholders influencing this process becomes imperative for devising a tailored strategy to integrate digital diaries effectively within ICU settings. AIM/OBJECTIVE: The aim of this study was to explore facilitators and barriers for implementation of a digital ICU diary from the perspectives of ICU professionals, ICU survivors, and their relatives. METHODS: A qualitative design was used, incorporating focus-group interviews with professionals from four Dutch ICUs, along with individual interviews with ICU survivors and relatives. The study spanned from October 2022 to April 2023. Data analysis utilised a mixed inductive-deductive approach, particularly through directed content analysis. The Consolidated Framework for Implementation Research 2.0 guided both data collection and analysis processes. FINDINGS: We conducted five focus-group interviews among ICU professionals (n = 32) and 10 individual or dual interviews involving five ICU survivors and nine relatives. Key facilitators for implementing a digital diary according to ICU professionals encompassed a user-friendly interface accessible independent of time and place, with a seamless login process requiring minimal steps, comprehensive training covering all aspects of its use, and feedback from the experiences of both patients and relatives. Barriers for ICU professionals included many steps required to access the digital diary, as well as resistance to (co)writing diary entries. In contrast, professionals' involvement in writing diary entries was highly appreciated among ICU survivors and relatives. An ambiguous factor arose regarding sharing the digital diary with others; both ICU survivors and relatives found it valuable, yet it also raised privacy concerns. CONCLUSIONS: This study offers insights into the most important factors influencing the implementation of a digital ICU diary. Strikingly, some factors serve as both barriers and facilitators. When developing the implementation strategy, the identified facilitators can be used to overcome the barriers faced by ICU professionals, ICU survivors, and their relatives in adopting a digital diary.
Subject(s)
Diaries as Topic , Focus Groups , Intensive Care Units , Qualitative Research , Humans , Male , Female , Netherlands , Adult , Middle Aged , Interviews as Topic , Survivors/psychologyABSTRACT
OBJECTIVE: To characterize seizure tracking patterns of people with focal epilepsy using electronic seizure diary entries, and to assess for risk factors associated with poor tracking. METHODS: We analyzed electronic seizure diary data from 410 participants with newly diagnosed focal epilepsy in the Human Epilepsy Project 1 (HEP1). Each participant was expected to record data each day during the study, regardless of seizure occurrence. The primary outcome of this post-hoc analysis was whether each participant properly tracked a seizure diary entry each day during their study participation. Using finite mixture modeling, we grouped patient tracking trajectories into data-driven clusters. Once defined, we used multinomial modeling to test for independent risk factors of tracking group membership. RESULTS: Using over up to three years of daily seizure diary data per subject, we found four distinct seizure tracking groups: consistent, frequent at study onset, occasional, and rare. Participants in the consistent tracking group tracked a median of 92% (interquartile range, IQR: 82%, 99%) of expected days, compared to 47% (IQR:34%, 60%) in the frequent at study onset group, 37% (IQR: 26%, 49%) in the occasional group, and 9% (IQR: 3%, 15%) in the rare group. In multivariable analysis, consistent trackers had lower rates of seizure days per tracked year during their study participation, compared to other groups. SIGNIFICANCE: Future efforts need to focus on improving seizure diary tracking adherence to improve quality of outcome data, particularly in those with higher seizure burden. In addition, accounting for missing data when using seizure diary data as a primary outcome is important in research trials. If not properly accounted for, total seizure burden may be underestimated and biased, skewing results of clinical trials.
Subject(s)
Seizures , Humans , Male , Female , Adult , Seizures/physiopathology , Seizures/diagnosis , Middle Aged , Young Adult , Epilepsies, Partial/physiopathology , Epilepsy/physiopathology , Epilepsy/diagnosis , Diaries as Topic , Adolescent , HabitsABSTRACT
BACKGROUND: Patients describe surreal experiences, hallucinations, loss of control, fear, pain, and other discomforts during their stay in intensive care units. Diaries written by critical care nurses can help patients fill-in memory gaps, gain an understanding of their illness after returning home, and enhance recovery. However, critical care nurses have difficulty deciding which patients in the intensive care unit should receive diaries and how to conduct and prioritise this nursing intervention. OBJECTIVES: The objective of this study was to explore critical care nurses' assessments regarding starting and writing diaries for adult patients in the intensive care unit. METHODS: A qualitative study with an exploratory descriptive design was utilised. Interviews were conducted with 14 critical care nurses from four hospitals. The data were analysed using systematic text condensation and were reported according to the consolidated criteria for reporting qualitative research checklist. FINDINGS: Three categories emerged: patients' disease trajectories and prognoses, tailoring the content and language and balancing time, and resources to create diaries that benefit patients. CONCLUSIONS: Whilst critical care nurses' assessments of the need for diaries are based on patients' disease trajectories and prognoses, patients' conditions can shift rapidly, which makes these assessments challenging. To ensure diary quality, the language and content should be personal and address the individual patient. The time and resources required for diaries are weighed against the benefits to patients. Contributions from colleagues and a common recognition in the intensive care unit of the value of the diaries influence nurses' judgements and are essential for successful diary practices.
Subject(s)
Critical Care Nursing , Diaries as Topic , Intensive Care Units , Qualitative Research , Writing , Humans , Adult , Female , Male , Interviews as Topic , Middle AgedABSTRACT
OBJECTIVE: While a substantial body of research describes the disabling impacts of migraine attacks, less research has described the impacts of migraine on physical functioning between migraine attacks. The objective of this study is to describe physical impairment during and between migraine attacks as a dimension of burden experienced by people living with chronic migraine. METHODS: The physical impairment domain of the Migraine Physical Function Impact Diary was recorded in headache diaries from the Medication Overuse Treatment Strategy trial. Days with moderate to severe headache were used to approximate migraine attacks. Factor analysis and regression analysis were used to describe associations between migraine and physical impairment. RESULTS: 77,662 headache diary entries from 720 participants were analyzed, including 25,414 days with moderate to severe headache, 19,149 days with mild headache, and 33,099 days with no headache. Mean physical impairment score was 41.5 (SD = 26.1) on days with moderate to severe headache, 12.8 (SD = 15.0) on days with mild headache, and 5.2 (SD = 13.1) on days with no headache. Physical impairment on days with mild headache and days with no headache was significantly associated with days since last moderate to severe headache, physical impairment with last moderate to severe headache, mild headache (compared to no headache), depression, hypersensitivities and cranial autonomic symptoms. CONCLUSIONS: Physical impairment occurs on migraine and non-migraine days. Study participants with frequent headaches, symptoms of depression, hypersensitivities and cranial autonomic symptoms experience physical impairment at a higher rate on days with no headache and days with mild headache.Clinical Trial Registration: ClinicalTrials.gov (NCT02764320).
Subject(s)
Migraine Disorders , Humans , Migraine Disorders/physiopathology , Female , Male , Adult , Middle Aged , Chronic Disease , Diaries as Topic , Medical RecordsABSTRACT
OBJECTIVE: Recently, a deep learning artificial intelligence (AI) model forecasted seizure risk using retrospective seizure diaries with higher accuracy than random forecasts. The present study sought to prospectively evaluate the same algorithm. METHODS: We recruited a prospective cohort of 46 people with epilepsy; 25 completed sufficient data entry for analysis (median = 5 months). We used the same AI method as in our prior study. Group-level and individual-level Brier Skill Scores (BSSs) compared random forecasts and simple moving average forecasts to the AI. RESULTS: The AI had an area under the receiver operating characteristic curve of .82. At the group level, the AI outperformed random forecasting (BSS = .53). At the individual level, AI outperformed random in 28% of cases. At the group and individual level, the moving average outperformed the AI. If pre-enrollment (nonverified) diaries (with presumed underreporting) were included, the AI significantly outperformed both comparators. Surveys showed most did not mind poor-quality LOW-RISK or HIGH-RISK forecasts, yet 91% wanted access to these forecasts. SIGNIFICANCE: The previously developed AI forecasting tool did not outperform a very simple moving average forecasting in this prospective cohort, suggesting that the AI model should be replaced.
Subject(s)
Forecasting , Seizures , Humans , Female , Male , Prospective Studies , Adult , Seizures/diagnosis , Middle Aged , Forecasting/methods , Epilepsy/diagnosis , Artificial Intelligence/trends , Young Adult , Deep Learning/trends , Algorithms , Diaries as Topic , Cohort Studies , AgedABSTRACT
OBJECTIVE: To examine the effects of web neonatal intensive care unit diaries on the mental health, quality of life, sleep quality, care ability, and hormone levels of parents of preterm infants in the neonatal intensive care unit. DESIGN: Prospective randomized controlled parallel-group clinical trial. SETTING: Maternal and Child Health Hospital, Fujian, China. METHODS: The control group received routine neonatal intensive care unit care, while the intervention group received a web neonatal intensive care unit diary based on routine care. Outcomes, including anxiety, depression, and post-traumatic stress disorder symptoms, quality of life, sleep quality, care ability, and cortisol and melatonin levels, were evaluated at T1 (Time 1, before the intervention), T2 (Time 2, immediately after the intervention), and T3 (Time 3, 1 month after the intervention). RESULTS: Seventy pairs of parents of preterm infants in the neonatal intensive care unit were randomly allocated to two groups: intervention (n = 35) and control (n = 35). The anxiety scores in the intervention group were significantly lower at T2 and T3 than those in the control group (P < 0.001). The care ability scores in the intervention group were significantly higher at T2 and T3 (P < 0.001). The prevalence of post-traumatic stress disorder at T3 was significantly different between the groups (P = 0.040). No significant differences were observed in the quality of life or sleep quality between the groups at T2 and T3 (P > 0.05). No significant differences were observed in cortisol and melatonin levels between the groups (P > 0.05). CONCLUSIONS: Web neonatal intensive care unit diaries effectively relieved anxiety symptoms, reduced the prevalence of post-traumatic stress disorder, and enhanced the care abilities of parents of preterm infants in the neonatal intensive care unit. IMPLICATIONS FOR CLINICAL PRACTICE: Web neonatal intensive care unit diary can be considered in clinical practice as a convenient psychological intervention method, especially among parents of preterm infants in the neonatal intensive care unit.
Subject(s)
Infant, Premature , Intensive Care Units, Neonatal , Parents , Quality of Life , Sleep Quality , Humans , Quality of Life/psychology , Female , Intensive Care Units, Neonatal/organization & administration , Intensive Care Units, Neonatal/statistics & numerical data , Infant, Newborn , Male , Parents/psychology , Prospective Studies , Adult , China , Internet , Hydrocortisone/analysis , Hydrocortisone/blood , Diaries as Topic , Anxiety/psychologySubject(s)
Accelerometry , Firefighters , Humans , Male , Adult , Wrist , Diaries as Topic , Middle Aged , Sleep/physiology , Female , Reproducibility of ResultsABSTRACT
OBJECTIVES: To describe cancer survivors' and care partners' perceived stress and social support during the COVID-19 pandemic and assess the feasibility of audio diaries for assessing role-related needs and resources. METHODS: Participants (Nâ¯=â¯51; nâ¯=â¯28 survivors, nâ¯=â¯23 care partners) recorded three monthly audio diaries reporting stress and support experiences. Diaries were transcribed and content-analyzed using a hybrid approach. Stress-related content was inductively coded, and social support content was deductively coded by type (instrumental, information, emotional, companionship, appraisal; κâ¯=â¯0.75) then inductively coded. Descriptive statistics summarized sociodemographic data and compared coding frequencies by role. We developed narrative summaries of stress and support categories and selected quotes for contextual detail. RESULTS: Cancer-related stressors were most prevalent (28.8%), followed by work (26.8%), family (23.1%), social isolation (13.4%), and finances (8.0%). While no significant difference in reporting frequency was observed between roles, cancer-related stress was more prevalent for survivors while work-related stress was mentioned more by care partners. Emotional support was the most prevalent support type (32.1%), followed by companionship (25.3%), appraisal (17.9%), instrumental (16.67%), and informational support (8%). Survivors reported more appraisal support than care partners (χ2â¯=â¯6.48, dfâ¯=â¯1, Pâ¯=â¯.011) and more support for self-care, while care partners expressed more other-oriented concerns and focused more on managing responsibilities and interactions outside the household. CONCLUSIONS: The pandemic complicated and intensified role-based stressors already present in the survivorship context. Our findings highlight the importance of informal social support networks, particularly when access to formal services is limited, and suggest that audio diaries can be an effective tool for assessing support needs and resources. IMPLICATIONS FOR NURSING PRACTICE: Nurses and healthcare providers should tailor social support assessments to address the distinct support needs and individual resources of cancer survivors and their care partners. This is especially critical in contexts that limit access to care and formal services.
Subject(s)
COVID-19 , Cancer Survivors , Social Support , Stress, Psychological , Humans , COVID-19/epidemiology , COVID-19/nursing , COVID-19/psychology , Male , Female , Cancer Survivors/psychology , Cancer Survivors/statistics & numerical data , Middle Aged , Aged , Adult , Caregivers/psychology , Neoplasms/psychology , Neoplasms/nursing , SARS-CoV-2 , Pandemics , Diaries as TopicABSTRACT
OBJECTIVES: To evaluate the psychometric properties of the Diary for Irritable Bowel Syndrome Symptoms-Constipation (DIBSS-C), which was developed to support primary and secondary endpoints in irritable bowel syndrome (IBS) with predominant constipation (IBS-C) clinical trials. METHODS: Observational data were collected from 108 adults with IBS-C using a smartphone-type device for 17 days. DIBSS-C data regarding bowel movements (BMs) were collected for each event (along with the Bristol Stool Form Scale); abdominal symptoms were rated each evening. Global status items and the Gastrointestinal Symptom Rating Scale-IBS were completed on day 10 and day 17 and the IBS-Symptom Severity Scale on day 17. Item-level performance, internal consistency reliability, test-retest reliability, and construct validity were evaluated. RESULTS: The Abdominal Symptoms Domain score demonstrated high internal consistency reliability (Cronbach's alpha week 1 = 0.98; week 2 = 0.96) and test-retest reliability (intraclass correlation coefficient [ICC] = 0.93). Test-retest reliability was stronger for abdominal symptoms (ICC = 0.91-0.94) than for the frequency-based BM-related outcomes (ICC = 0.54-0.66). Key construct validity hypotheses were supported by moderate to strong correlations with the corresponding Gastrointestinal Symptom Rating Scale-IBS, IBS-Symptom Severity Scale, and Bristol Stool Form Scale items. All known-groups comparisons were statistically significant for the abdominal symptom items and domain score; evidence for known-groups validity of BM-related outcomes was supportive when based on constipation severity. CONCLUSIONS: The results of this study provided key psychometric evidence for the DIBSS-C, ultimately contributing to its qualification by the US Food and Drug Administration for use in IBS-C clinical trials.
Subject(s)
Constipation , Irritable Bowel Syndrome , Psychometrics , Severity of Illness Index , Humans , Irritable Bowel Syndrome/psychology , Irritable Bowel Syndrome/physiopathology , Irritable Bowel Syndrome/diagnosis , Constipation/physiopathology , Constipation/psychology , Constipation/diagnosis , Female , Male , Prospective Studies , Reproducibility of Results , Adult , Middle Aged , Aged , Young Adult , Diaries as TopicABSTRACT
BACKGROUND: Family partaking in writing practices, such as writing intensive care unit (ICU) patient diaries, personal diaries/journaling, social media, or instant messaging services, during ICU admission may allow the family to unintentionally participate in a form of expressive writing. These writing practices could provide structure for the family authors to explore emotions and manage significant life events, including death of a loved one. Limited studies have explored the family's postmortem experiences and perceived value of writing practices maintained during an ICU admission. OBJECTIVES: The objective of this study was to explore the family member's preferences for and experiences of writing practices in the adult ICU and its use in early bereavement. METHODS: descriptive qualitative design using inductive reflexive thematic analysis from a purposeful, convenience sample of 16 bereaved participants from a tertiary referral, adult ICU in Australia who discussed their experiences of and preferences in writing practices. Reporting adheres to the consolidated criteria for reporting qualitative research checklist. FINDINGS: Six participants maintained writing practices during the ICU admission and 10 did not. Three themes were generated from the data: the decision to maintain writing practices was shaped by past behaviours and perceived utility; moments captured were influenced by the loved ones' clinical status and their ability to access the writing medium; and writing practices have limited utility as a memory making object in early bereavement. CONCLUSIONS: Based on the generated findings, participants who did not maintain writing practices did not later regret this decision during early bereavement. Participants who did maintain writing practices predominately used a personal diary/journal that they carried with them. As the loved one approached death, the written entries became shorter, then ceased. Most of the written entries were not read during early bereavement, suggesting the writing practices' psychological value might have been predominately gained at the time of writing, rather than during early bereavement.
Subject(s)
Bereavement , Family , Intensive Care Units , Qualitative Research , Writing , Humans , Female , Male , Middle Aged , Adult , Family/psychology , Aged , Australia , Diaries as TopicABSTRACT
ABSTRACT: People with chronic pain often attempt to manage pain and concurrent emotional distress with analgesic substances. Habitual use of such substances-even when not opioid-based-can pose side effect risks. A negative reinforcement model has been proposed whereby relief of pain and emotional distress following medication consumption increases the likelihood that the experience of elevated pain and distress will spur further medication use. People with chronic low back pain (N = 105) completed electronic diary assessments 5 times/day for 14 consecutive days. Lagged and cross-lagged analyses focused on links between time 1 pain and negative affect (NA) and time 2 analgesic medication use and vice versa. Sex differences were also explored. Primary results were as follows: (1) participants on average reported taking analgesic medication during 41.3% of the 3-hour reporting epochs (29 times over 14 days); (2) time 1 within-person increases in pain and NA predicted time 2 increases in the likelihood of ingesting analgesic medications; (3) time 1 within-person increases in medication use predicted time 2 decreases in pain and NA; and (4) lagged associations between time 1 pain/NA and time 2 medication use were strongest among women. Findings suggest that the use of analgesic medications for many people with chronic pain occurs frequently throughout the day. Results support the validity of a negative reinforcement model where pain and distress lead to pain medication use, which in turn leads to relief from pain and distress.
Subject(s)
Analgesics , Chronic Pain , Low Back Pain , Humans , Low Back Pain/drug therapy , Low Back Pain/psychology , Female , Male , Chronic Pain/drug therapy , Chronic Pain/psychology , Middle Aged , Adult , Analgesics/therapeutic use , Affect/drug effects , Pain Measurement/methods , Aged , Diaries as Topic , Young AdultABSTRACT
This weekly diary study investigated associations of weekly dyadic coping strategies with caregivers' willingness to care and burden. Multilevel modelling was applied to assess between- and within-person associations for 24 consecutive weeks in 955 caregivers. Greater willingness to care was reported in weeks when caregivers used more collaborative (b = 0.26, p < 0.001) and supportive (b = 0.30, p < 0.001) strategies, whereas uninvolved coping was associated with lower willingness to care (b = -0.44, p < 0.001). Using collaborative coping strategies was associated with lower weekly burden (b = -0.13, p < 0.001). A greater burden was reported in weeks when caregivers used more uninvolved (b = 0.19, p < 0.001) and controlling (b = 0.13, p < 0.001) coping strategies. A full understanding of whether caregivers' willingness to care and burden may be improved owing to weekly dyadic coping is essential for developing timely support for caregivers.
Subject(s)
Caregivers , Coping Skills , Adult , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Caregiver Burden/psychology , Caregivers/psychology , Diaries as TopicABSTRACT
INTRODUCTION: Admission to an intensive care unit can cause sequelae to both patients and family members. In some countries, the use of diaries is a preventive action. AIM: This research proposes to critically examine the concept of 'Intensive Care Unit Diary' by analysing the current state of the scientific literature to develop a precise conception of this phenomenon in nursing practice, since there are multiple unknowns regarding its use and content. METHOD: A bibliographic search was carried out in the PubMed, Cochrane Library, Scopus and CINAHL databases in January 2023. The terms used to search for their use and definitions in the databases included Nurse, Concept analysis, Family, Uci Diary, Patient Critical, Intensive Care Unit. We use Wilson's concept analysis, later developed by Walker and Avant. RESULTS: The concept analysis shows that the 'ICU Diary' is a record made in colloquial language by health workers and relatives of the patient admitted to the intensive care unit. Aimed at the patient, with an empathic and reflective style, which offers a narrative of the process, daily life and the conduct or behaviour of the patient during his stay. It is a therapeutic tool led by nurses accepted by patients, families and professionals. Its use benefits the recovery process, reducing post-traumatic stress in family members and patients. It favours communication and the bond between nurses, family members and patients, helping to express feelings and emotions. CONCLUSIONS: The concept of 'UCI Diary' is complex. Through Wilson's model, a clarification of the concept has been achieved, creating a starting point for more precise research on this phenomenon and its effects on patients, family members, professionals and the health system.