Negative Caregiving Research Articles

노인을 돌보는 가족돌봄자의 돌봄부담-디스트레스 관계에서 가족관계망의 감사와 지원의 효과

The purpose of this study was to examine the relationship between caregiver burden and distress among caregivers of older adults and to identify the family gratitude and family support that moderate the relationship between caregiver burden and distress. Caregiver burden was assessed based on the amount of total caregiving time (per week), the gap between the amount of actual and desired caregiving time, and the negative caregiving experiences. Family characteristics were analyzed based on social support theory and social recognition theory to investigate whether family gratitude and economic support from family members moderate the caregiver burden-stress relationship. The analysis was conducted on 501 primary caregivers for older adults from the 2018 National Survey of Family Caregiving. The results of this study are as follows: First, when controlling for other characteristics, family caregivers who reported more negative caregiving experiences (e.g. demanding care, constant surveillance, interference from others) experienced higher levels of distress when their actual caregiving time exceeded their preferred caregiving time. Secondly, primary caregivers who perceived gratitude from their families appeared lower levels of distress. Moreover, the interaction effect between caregiving time gap and acknowledgment was significant, indicating that the recognition of gratitude from family members is meaningful in moderating the distress of primary caregivers in stressful situations. Thirdly, the interaction effect between negative caregiving experiences and economic support was also significant, suggesting that the intensity of distress caused by negative caregiving experiences can be reduced through the financial support provided by family members.

Disrupted Lives: Caregivers' Experiences of In-Hospital Cardiac Arrest Survivors' Recovery 5 Years Later.

Background Survivors of in-hospital cardiac arrest (IHCA) experience ongoing physical and cognitive impairments, often requiring support from a caregiver at home afterwards. Caregivers are important in the survivor's recovery, yet there is little research specifically focused on their experiences once the survivor is discharged home. In this study, we highlight how caregivers for veteran IHCA survivors described and experienced their caregiver role, the strategies they used to fulfill their role, and the additional needs they still have years after the IHCA event. Methods and Results Between March and July 2019, semistructured telephone interviews were conducted with 12 caregivers for veteran IHCA survivors. Interviews were transcribed, and content analysis was performed. Patterns within the data were further analyzed and grouped into themes. A predominant theme of "disruption" was identified across 3 different domains including the following: (1) disruption in caregiver's life, (2) disruption in caregiver-patient relationship, and (3) disruption in caregiver's well-being. Disruption was associated with both positive and negative caregiver experiences. Strategies caregivers used and resources they felt would have helped them adjust to their caregiver role were also identified. Conclusions Caregivers for veteran IHCA survivors experienced a disruption in many facets of their lives. Caregivers felt the veterans' IHCA impacted various aspects of their lives, and they continued to need additional support in order to care for the IHCA survivor and themselves. Although some were able to procure coping strategies, such as counseling and engaging in stress-relieving activities, most indicated additional help and resources were still needed.

Daily Caregiving Appraisals, Future Self-Views, and Physical Activity Goals Among Adult-Daughter Dementia Caregivers.

Caregiving dynamics may shape caregivers' views on their own aging in ways that affect their (de)motivation to improve their current and future health and well-being. In this study, we investigated within-person associations of daily positive and negative caregiving appraisals, future self-views (physical functioning, cognitive, and overall health domains), and physical activity goal pursuit among adult-daughter dementia caregivers. Data came from 33 middle-aged caregivers (M = 55.03) who participated in a 30-day microlongitudinal study of caregiving (N of occasions = 855). We used multilevel modeling to analyze within-person associations. Daily positive caregiving appraisals were not associated with daily future self-views. However, on days when caregivers reported higher negative caregiving appraisals, they thought more negatively about their future older selves in all domains. In turn, on days when caregivers thought more negatively about their future older selves in all domains, they reported lower physical activity goal pursuit. Future self-views in all domains mediated the association between negative caregiving appraisals and physical activity goal pursuit. Future self-views did not mediate the association between positive caregiving appraisals and physical activity goal pursuit. However, cognitive future self-views moderated the association between positive caregiving appraisals and physical activity goal pursuit. Results suggest that one pathway through which subjective caregiving experiences, especially negative caregiving appraisals, affect caregivers' physical activity goal pursuit is through future self-views. Thus, this study offers a deeper theoretical understanding of caregivers' self-regulatory health behavior and new empirical information on how caregiving might affect life-span developmental motivation.

Factors related to the quality of life of family cancer caregivers.

Cancer caregivers directly affect patient health outcomes. To maintain the function and health of caregivers so that patients can receive efficient care, we must pay more attention to caregivers' quality of life in the process of caring for patients. However, the factors influencing caregivers' quality of life are complex. To assess caregivers' quality of life in the process of caring for cancer patients and to explore the factors associated with it. This was a descriptive correlational study. A self-report questionnaire was used to anonymously collect data from one Chinese cancer hospital. The Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp-12), General Self-efficacy Scale (GSES), Positive and Negative Affect Schedule (PANAS), Connor-Davidson Resilience Scale 10 (CD-RISC-10), 24-item Caregiver Burden Inventory (CBI) and Caregiver Evaluation Questionnaire were used to measure caregivers' spiritual well-being, self-efficacy, affective well-being, resilience, caregiver burden and quality of life. One-way analysis of variance, the Kruskal-Wallis H test and multiple regression analysis were applied to measure the factors influencing caregivers' situations. A total of 315 caregivers of cancer patients were selected by convenience sampling. All participants were invited to complete the questionnaire through a one-on-one approach. The mean score for caregiver quality of life was 204.62 ± 36.61. After controlling for demographic factors, self-efficacy (β' = 0.265, p < 0.01), resilience (β' = 0.287, p < 0.01) and positive affect (β' = 0.103, p < 0.01) were protective factors for caregivers' quality of life. Negative affect (β' = -0.217, p < 0.01) and caregiver burden (β' = -0.219, p < 0.01) were negative factors. Notably, not all of these predictors can predict all dimensions of quality of life. Caregivers' quality of life needs to be further improved. The results of this study may provide clues to help identify factors influencing caregivers' quality of life and implement targeted strategies to improve their quality of life.

A Profile of Positive and Negative Caregiving Experiences Among Canadian Older Adults: The Relevance of Demographic and Care Contexts.

This study examines the predictors of burdens and benefits of informal caregiving to caregivers by examining how demographic characteristics and care contexts simultaneously predict separate scales of positive and negative caregiving experiences. The Caregiving, Aging, and Financial Experiences study is a national survey which examines a representative sample of 4010 Canadians between the ages of 65 and 85, including 1641 informal caregivers that are the focus of the current analysis. Seemingly unrelated regression analyses show that there are similarities as well as differences in predictors between the two caregiving experiences. More frequent involvement in caregiving is associated with greater negative caregiving experiences but those are not significant predictors for less positive caregiving experiences. This study demonstrates that there are some overlaps of determinants of the two caregiving experiences, and a few of them are distinct. Further studies should warrant to identify additional, unobserved factors explaining variance in positive caregiving experience.

Home Hospice Family Caregivers' Use of Audio Diaries and Reported Prevalence of Patient and Caregiver Symptoms.

Family caregivers are essential to home hospice care for patients with advanced cancer, including reporting patient symptoms to hospice providers for follow-up. Hospice caregiving can also impact personal well-being. 1) Assess home hospice caregivers' use of prospective, longitudinal audio diaries tracking patient and caregiver wellbeing; 2) Explore how patient-focused vs. caregiver-focused diary prompts perform; 3) Examine the prevalence of interactive voice response (IVR)-tracked symptoms and whether diaries revealed additional symptoms. Caregivers (N=102) were asked to report patient and caregiver symptoms via daily IVR calls and could record optional diaries responding to patient-focused or caregiver-focused prompts. Diaries were transcribed, classified by presence/absence of new information, and compared by prompt type. Content coding for IVR-tracked symptoms and inductive coding for additional symptoms were summarized by frequency counts and exemplary quotes. Sixty-nine percent of participants (n=70) recorded diaries, and of these 72.86% (n=51) recorded ≥ one new-information diary. The median recording length was 53.00 seconds (SD=53.36). Participants responding to the caregiver-focused prompt (n=33) recorded more diaries than those in the patient-focused group (n=37; U=437.500, P=0.04. Most prevalent IVR-tracked symptoms were patient fatigue/weakness (26.54% of symptoms mentioned) and pain (23.08%), and caregiver anxiety/nervousness (47.51%) and fatigue (22.10%). The most prevalent additional symptoms were patient increasing sleepiness/sleeping (26.32%) and breathing difficulties (24.32%), and negative caregiver emotions (e.g., guilt, resentment, anger; 29.17%). Prospective audio diaries offer a viable avenue for communicating symptoms and support needs. Future research will focus on leveraging longitudinal data for developing focused and tailored caregiver support interventions.

Parental protection in fathers with negative caregiving experiences: Heightened amygdala reactivity to infant threatening situations.

Parental protection is an important, yet understudied, aspect of parenting behavior. Predictors of the quality of protection and potential underlying neural mechanisms are still unknown. In this study, we examined whether negative caregiving experiences in fathers' own childhood are related to protective behavior and neural reactivity to infant threatening situations. Paternal protective behavior was measured with self- and partner-reported protective behavior and behavioral observations in an experimental set-up (auditory startling task) in 121 first-time fathers (mean age child=19.35 weeks, SD=11.27). Neural activation during exposure to videos of infant-threatening (vs. neutral) situations was measured with functional magnetic resonance imaging (fMRI). We found a significant and positive association between negative caregiving experiences and amygdala reactivity to infant-threatening situations. A history of negative caregiving experiences was not significantly related to reported or observed paternal protective behavior. Our findings suggest that fathers with negative caregiving experiences show emotional hyperreactivity to cues of infant threat.

UNCOVERING THE POSITIVE ASPECTS OF CAREGIVING: A PROFILE OF CAREGIVERS’ DEMOGRAPHIC AND CARE CONTEXTS

Abstract Burden and benefits of caregiving experiences can coexist. The objective of this research is to describe and compare the predictors of the two intertwined caregiving experiences. This study examines how the variations in caregiving experiences can be explained in terms of both positive and negative aspects of caregiving, respectively by demographic characteristics and care related contexts. The Caregiving, Aging, and Financial Experiences study is a national survey intended to examine social conditions and well-being among a representative sample of 4,010 Canadians between age 65 and 85. Within the sample, 1,641 informal caregivers are the focus of the current analysis. Scales of positive and negative caregiving experiences are employed. Findings based on principal axis factor analysis shows that there is clear separate factor loadings between the positive and negative caregiving experiences. Subsequent seemingly unrelated regression analysis shows that there are similarities as well as differences in predictors between the two caregiving experiences. Lastly, the variance explained differs markedly between the two measures, with over 26% of the variance in negative caregiving accounted for by demographic and caregiving factors, but less than 4% of the variance in positive caregiving. This study demonstrates that positive aspects of caregiving is not simply the flip-side of negative caregiving. Standard predictors do not sufficiently explain positive caregiving as well as negative caregiving. Consequently, greater attention to factors that account for positive aspects of caregiving is warranted for an inclusive understanding of caregiving experiences.

POSITIVE APPRAISALS OF CAREGIVING SUPPORT DEMENTIA CAREGIVERS' PHYSICAL ACTIVITY GOAL PURSUIT

Abstract Middle-age daughters caring for parents with dementia have multiple roles and often neglect their own health. In addition to reporting negative appraisals of caregiving dementia caregivers also report positive appraisals, which may support their health behavior. In this study we examine how positive and negative caregiving appraisals interacted to predict physical activity goal pursuit among 27 daughters of parents with dementia who participated in the ACHIEVE Study, an NIH-funded 30-day study on caregiving (Noccasions=622). On days when caregivers had more positive appraisals than their own average, they had higher physical activity goal pursuit, even after controlling for that day’s negative appraisals (β=0.31, SE=0.09, p=0.001). Moreover, the association between positive appraisals and goal pursuit was not dependent on that day’s negative appraisals (p=0.42). Supporting adult-daughter caregivers to feel positively about their role as a caregiver on a day-to-day basis may support them to stay on track with their physical activity goals.

Preliminary Analysis of Aspects of Caregiving among Spousal Caregivers and Adult Child Caregivers for Persons with Dementia

AbstractBackgroundWhile dementia caregiving experiences may vary across individuals, many studies have focused on the negative aspects of caregiving and reducing caregiver burden and stress. Understanding both positive and negative aspects of caregiving is essential, particularly between different caregiver types. This study aimed to compare positive and negative caregiving experiences between spousal and adult child caregivers. We also examined whether the caregiver type (spousal caregivers vs. adult child caregivers) is a significant factor predicting these caregiving experiences.MethodWe analyzed baseline data from an ongoing trial to manage sleep problems among persons with dementia (PwD) and their caregivers. Demographic data, Positive Aspects of Caregiving (PAC), Zarit Burden Interview (ZBI), and Center for Epidemiological Studies of Depression (CESD) data were collected from 39 caregivers (n = 27 spouses, n = 12 adult children; 82% women, 54% Whites). Descriptive and bivariate analyses and multiple regression models were conducted.ResultAdult child caregivers reported that providing care for their loved one made them feel more appreciated than spousal caregivers (4.25±1.21 vs. 3.48±0.97, respectively); however, they felt more stress when caring for the PwD and trying to meet other family and work responsibilities (2.75±0.86 vs. 2.07±0.99, respectively) and felt they should be doing more for the PwD (2.17±0.71 vs. 1.30±1.07, respectively; all p&lt;0.05) than did spousal caregivers. No significant differences were found in the PAC and the ZBI total scores by caregiver type. In a separate regression model, CESD total score was the only significant factor predicting PAC and ZBI total scores, controlling for caregiver type, race (Whites vs. others), level of education, employment status, and years of caregiving. However, only the model predicting the ZBI total score was statistically significant (p&lt;0.01, adjusted R2 = 54%).ConclusionThese preliminary findings suggest a critical need to better understand positive and negative caregiving experiences, particularly among adult child caregivers. Assessment of depressive symptoms should be included when examining caregiving experiences among spousal and adult child caregivers. Future studies are warranted to test whether characteristics of PwD or support received by caregivers would contribute to positive or negative caregiving experiences across caregiver types.

Opportunities to improve care for patients with peritoneal carcinomatosis and their caregivers.

207 Background: Cancers of the gynecologic and gastrointestinal tracts (GYN/GI) often metastasize along the peritoneum (peritoneal carcinomatosis; PC), causing ascites and malignant obstructions of the bowel, urinary tract, and biliary tree. Patients with PC frequently require palliative surgical interventions; e.g., ostomies, gastric tubes, and catheters. To date, few researchers have described the unique needs of these patients and their caregivers. Methods: We recruited adult patients with advanced GYN/GI cancers, a recent hospitalization for PC, and a new complex care need. We invited adult caregivers of enrolled patients to participate. We abstracted patients’ clinical characteristics and outcomes from the medical record. At baseline, patients completed items related to perceived health status and advance care planning, while caregivers completed the Caregiver Reaction Assessment (CRA) and items related to their caregiving role. All participants completed the Hospital Anxiety and Depression Scale. Results: Sixty-five patients and 40 caregivers completed surveys. Fifty-six (86%) patients had GYN and nine (14%) had GI cancers. Most (56/65, 86%) were re-hospitalized within two months, and over a quarter (18/65, 27%) died within six months of enrollment. Twenty-four (37%) reported they were terminally ill, but only nine (14%) had spoken with a physician about the care they would want to receive if they were dying. Caregivers were primarily spouses (27/40, 70%) who provided most or all of the care for their loved one (25/40, 63%) and engaged in caregiving seven days per week (27/40, 68%). Of the four CRA subscales measuring negative caregiving experiences, mean scores were highest for impact on schedule (3.3, SD = 0.8; possible range 1-5, higher scores indicate greater burden), followed by impact on finances (2.3, SD = 1.1), impact on health (2.0, SD = 0.65), and lack of family support (1.8, SD = 0.67). Caregivers reported that they received training on a mean of 1.1 (SD = 1.3) clinical care tasks but performed a mean of 2.9 (SD = 1.7) clinical care tasks. Thirty-two (49%) patients and 9 (23%) caregivers met borderline case or case criteria for depressive symptoms, while 26 (40%) patients and 15 (38%) caregivers met borderline case or case criteria for anxiety symptoms. Conclusions: Patients with PC and their caregivers are highly burdened and distressed. Patients are at high-risk for re-hospitalization, but few have discussed their end-of-life wishes with their medical teams. Interventions that train these patients and their caregivers to perform clinical care tasks, facilitate serious illness conversations, and provide psychosocial support are needed. Clinical trial information: NCT03367247.

Negative caregiving and stress reactivity moderate the relation between early life stress and externalizing in adolescence.

Exposure to early life stress (ELS) is common and has been implicated in the development of psychopathology; importantly, however, many individuals who experience ELS do not develop emotional or behavioral difficulties. Prior research implicates stress exposure, negative caregiving behaviors, and patterns of physiological reactivity in predicting psychological well-being; however, the precise factors that contribute to resilience versus vulnerability to the adverse effects of stress exposures are not well understood. In a longitudinal study of adolescents (N=120) assessed at three timepoints approximately every 2 years beginning at the ages of 913 years, we examined the roles of autonomic reactivity to social stress (assessed through skin conductance during the Trier Social Stress Task) and negative caregiving behaviors as moderators of the association between exposure to ELS and internalizing and externalizing symptoms. We found that the relation between ELS and externalizing symptoms was moderated by both negative caregiving and autonomic reactivity, such that the relation between ELS and externalizing was positive at low levels of negative caregiving and at high levels of autonomic reactivity; interactions predicting internalizing symptoms were not statistically significant. These findings highlight the importance of considering physiological and environmental variables that might contribute to susceptibility or resilience to symptoms of psychopathology following exposure to ELS.

Modifiable factors of depressive-symptom trajectories from caregiving through bereavement

Background/purposeThe purpose of this secondary-analysis study was to identify never-before-examined factors associated with distinct depressive-symptom trajectories among family caregivers from end-of-life caregiving through the first 2 bereavement years.Participants/methodsParticipants (N=661) were family caregivers who provided end-of-life caregiving for terminally ill cancer patients. Multinomial logistic regressions were conducted to identify modifiable factors associated with caregivers’ seven previously identified depressive-symptom trajectories: minimal-impact resilience, recovery, preloss-depressive-only, delayed symptomatic, relief, prolonged symptomatic, and chronically persistent distressed. Drawing from the stress-appraisal-coping model, modifiable time-varying factors associated with distinct depressive-symptom trajectories were examined in three domains: (1) stressors, (2) stress appraisal, and (3) available resources (internal coping capacity and external social support).ResultsProfound objective caregiving demands were associated with caregivers’ increased likelihood of belonging to more distressing depressive-symptom trajectories than to the minimal-impact-resilience trajectory. But, stronger negative appraisal of end-of-life caregiving increased odds of caregiver membership in preloss-depressive-only and relief trajectories over the recovery, delayed, and prolonged-symptomatic trajectories. Stronger internal coping capacity and perceived social support buffered the tremendous stress of end-of-life caregiving and permanent loss of a relative, as evidenced by higher odds of being in the minimal-impact-resilience and recovery trajectories.ConclusionFamily caregivers’ distinct depressive-symptom trajectories were linked to their preloss caregiving demands, appraisal of negative caregiving impact, personal coping capacity, and perceived social support. Our results highlight actionable opportunities to improve end-of-life-care quality by boosting family caregivers’ coping capacity and enhancing their social support to help them adequately manage daily caregiving loads/burdens thus relieving the emotional toll before patient death and throughout bereavement.

Social connectedness of carers: An Australian national survey of carers.

Carers of people living with a disability, mental health problems, alcohol or drug dependency, chronic condition, terminal illness or who are frail due to age may experience negative caregiving impacts. Although carers' social isolation has been reported in many qualitative studies, it has largely been neglected in quantitative studies. Using data collected in the Carers NSW 2020 National Carer Survey, this large-scale quantitative study aimed to identify the extent of Australian carers' social connectedness and what factors may be related to their social well-being. The validated Friendship Scale was used to measure social connectedness of 5585 carers. More than half (56.2%) of these carers were socially isolated. Analysis found that a longer duration of caring, more time spent weekly caring, living with the care recipient, caring for a greater number of people, receiving no help from others, higher reported psychological distress and reporting perceived needs were all associated with greater social isolation. Identifying as female or nonbinary/gender diverse, identifying with a culturally and linguistically diverse background, and caring as a parent, former partner or young carer were also related to poorer social connectedness. Health and social services need to consider the needs of carers, identify carers who are socially isolated and provide resources to promote social connectedness. Greater attention in practice and research to focus on carers' social connectedness to address this crucial caregiving experience is required.

Expanding Occupational Therapy Perspectives with Family Caregivers

Background. Family caregivers are ever-present and crucial collaborators in the work of occupational therapists but are rarely the focus of their efforts. Purpose. This lecture will discuss the greater inclusion of family caregivers in occupational therapy and the exciting possibilities that emerge from this change. Key issues. Family caregivers are a unique client population. This position statement is supported by recent research on occupational therapists’ values and shifts towards an occupational participation approach in the profession. Working with this client population requires a nuanced understanding of their experience. Caregiving can be burdensome, but it can also create positive effects many of which can be identified and understood through a relational lens. Implications. Through a three-fold approach, occupational therapists can work with caregivers to locate and mitigate negative caregiving effects, discover, and build on positive effects, and further develop positive outcomes by encouraging and balancing caregiving and non-caregiving occupations.

The Development of an Evidence-Based Telephone-Coached Bibliotherapy Protocol for Improving Dementia Caregiving Appraisal.

Caregiving appraisal is the caregivers’ cognitive evaluation of caregiving stressors. It determines the caregiving outcomes and caregiver health. Dementia caregivers have shown relatively negative caregiving appraisals. However, there is a lack of interventions to improve caregiving appraisal. This study describes the multi-phase process of developing and validating an evidence-based bibliotherapy protocol for improving the caregiving appraisal of informal caregivers of people with dementia. Two phases were included in the development: In Phase 1, a series of reviews of theory and evidence were conducted to identify the theoretical underpinnings, the core components, the dosage, and the mode of delivery of evidence-based bibliotherapy. In Phase 2, focus groups consisting of an expert panel of 16 clinicians and academics were used to validate the intervention protocol. Evidence synthesis was used in Phase 1 to formulate a draft intervention protocol. Content analysis was used in Phase 2 to work out the principles to revise the intervention protocol. The validated evidence-based bibliotherapy protocol included eight weekly sessions, and each session targeted improving one aspect of the essential factors that influence caregiving appraisal. This study provided a culturally sensitive and contextually appropriate evidence-based bibliotherapy protocol ready to be tested in a clinical trial.

Hospice Glassdoor and CAHPS® Scores-Glassdoor Scores and Hospice Financial Characteristics Predict Hospice Consumer Assessment of Healthcare Providers and Systems Scores.

Recent public data transparency on both decedent caregiver satisfaction and employee satisfaction is impacting the three most essential needs of any hospice, admitting hospice enrollees, attracting hospice professionals and delivering on quality. Explore the relationship between Glassdoor hospice employee recommendation data, hospice financial characteristics, and Consumer Assessment of Healthcare Providers and Systems (CAHPS®) scores among the 50 largest US hospices. Retrospective data with multivariate regression analysis. Provider CAHPS hospice survey data from 2019-2020 and Glassdoor employee recommendation data. Glassdoor Composite and CAHPS Composite were positively correlated (r = .469, p < .01). Glassdoor scores, profit status, and acquisition status predicted Hospice CAHPS scores and explained 44% of the variation in CAHPS Composite. Being a large, for-profit hospice in acquisition status each predicted lower CAHPS scores. Non-profit hospices had significantly higher Glassdoor and CAHPS scores than for-profit hospices. CAHPS Composite and CAHPS Star Rating have potential as global indicators to inform customers of a given hospice's overall quality on the Hospice Compare website of CMS. Hospice leaders seeking improvements in CAHPS scores are encouraged to seek feedback on whether their own employees would recommend their hospice to a friend. Communication and responsiveness were the strongest indicators of overall hospice quality. Skelton hospice staffing models must give way to realistic models that value company culture and employee satisfaction. Hospice quality and hospice profits are not necessarily mutually exclusive. Future research should explore the difference in themes emerging from positive and negative online caregiver reviews.

Objective and subjective sleep and caregiving feelings in mothers of infants: a longitudinal daily diary study.

This study explored the links between mothers' objective and subjective sleep and their caregiving feelings toward their infant (i.e. patience for the infant, desire to be with the infant, and anger toward the infant), using a diary study design. We were particularly interested in examining whether nights of lower sleep quality within individual mothers predict more negative maternal caregiving feelings the following day. The sample included 151 women, who were recruited during pregnancy. Data were collected at 4 and 8 months after delivery. Maternal sleep was monitored at home for seven nights using actigraphy and sleep diaries. Mothers rated their caregiving feelings each evening. Multilevel modeling (controlling for depressive symptoms, feeding method, and background variables) revealed that actigraphic and subjective sleep variables were associated with maternal caregiving feeling, both at the between- and within-person levels. For example, lower sleep percent predicted reduced levels of maternal patience for the infant at 4 and 8 months (between-person effect). Moreover, when a mother had a lower sleep percent on a given night (compared to her average), she reported lower levels of patience for her infant the following day (within-person prospective effect). The findings demonstrate, for the first time, that maternal nightly variations in objective and subjective sleep quality predict daily changes in maternal feelings toward her infant at two different assessment points. Improving maternal sleep quality might be an important target for future interventions which may help mothers to feel more positively toward their infants.

Family caregiving and chronic illness management in schizophrenia: positive and negative aspects of caregiving

BackgroundWe aimed to explore the long-term caregiving experiences of family caregivers of people with schizophrenia (PwS) in terms of both positive and negative aspects.MethodUtilising a purposive sampling method, we conducted in-depth interviews with 20 family caregivers of persons who had suffered from schizophrenia for more than 20 years. We empirically investigated their retrospective experiences of caregiver-patient interactions during a long period of family caregiving. We audio-recorded and transcribed the interviews into text. We thematically coded and analysed the transcribed text using a four-phase method of theme development.FindingsSchizophrenia might not only generate a caregiving burden, affect caregivers’ psychological status, and accordingly influence their coping strategies, but also have short- or long-term patient-related consequences.DiscussionFamily caregivers should develop their stress management skills to cope with relevant life changes and increase their knowledge of the potential psychological consequences for care recipients resulting from negative caregiving strategies during home-based practice. Care recipients with schizophrenia in a relatively stable status should be empowered to take care of themselves. More effective family-based interventions for psychiatric nursing or individualised training for symptom management should be tailored to serve families’ diverse needs.

Opioid treatment program safety measures during the COVID-19 pandemic: a statewide survey

BackgroundOpioid treatment programs (OTPs) serve as daily essential services for people with opioid use disorder. This study seeks to identify modifications to operations and adoption of safety measures at Pennsylvania OTPs during the COVID-19 pandemic.MethodsA 25-min online survey to clinical and administrative directors at all 103 state-licensed OTPs in Pennsylvania was fielded from September to November 2020. Survey domains included: 1) changes to services, client volume, hours and staffing during the COVID-19 pandemic 2) types of services modifications 3) safety protocols to reduce COVID-19 transmission 4) challenges to operations during the pandemic.ResultsForty-seven directors responded, for a response rate of 45%. Almost all respondents reported making some service modification (96%, n = 43). Almost half (47%, n = 21) of respondents reported reductions in the number of clients served. OTPs were more likely to adopt safety protocols that did not require significant funding, such as limiting the number of people entering the site (100%, n = 44), posting COVID-safety information (100%, n = 44), enforcing social distancing (98%, n = 43), and increasing sanitation (100%, n = 44). Only 34% (n = 14) of OTPS provided N95 masks to most or all staff. Respondents reported that staff’s stress and negative mental health (86%, n = 38) and staff caregiving responsibilities (84%, n = 37) during the pandemic were challenges to maintaining OTP operations.ConclusionOTPs faced numerous challenges to operations and adoption of safety measures during the COVID-19 pandemic. Funding mechanisms and interventions to improve adoption of safety protocols, staff mental health as well as research on patient experiences and preferences can inform further OTP adaptation to the COVID-19 pandemic and future emergency planning.