Higher Caregiver Burden Research Articles

The impact of cognitive impairment of individuals with Parkinson's disease on their caregivers' mental health: A systematic review protocol.

IntroductionParkinson’s disease is a motor disease, the second most common neurodegenerative disorder with cardinal symptoms including bradykinesia, rigidity, and rest tremor accompanied by cognitive difficulties. The caregivers play a crucial role for individuals with Parkinson’s disease; however, many of them may suffer from high caregiver burden and mental health deterioration. This protocol of a systematic review presents a methodology of the review about the impact of cognitive impairment of individuals with Parkinson’s disease on their caregivers’ mental health.Material and methodsResearch will be identified by combining electronic databases searching and hand searching. The following databases will be included: Medline, PsycInfo, Web of Sciences, Cochrane, CINAHL, Embase and Scopus. The inclusion and exclusion criteria followed to PECOS model. The population of informal caregivers is defined as family members providing care on a patient with Parkinson’s disease. Exposure is linked with the evaluation of a cognitive functioning and outcome is defined as mental health among caregivers of individuals with Parkinson’s disease. We will include two types of studies: observational and intervention. Both, screening and eligibility will be done by two independent reviewers. Study quality will be assessed by two authors independently. Data will be extracted by two reviewers independently and will follow a pre-pilot extraction form. Any discrepancies will be resolved by discussion or/and consultation with another reviewer. The synthesis without meta-analysis (SWiM) guidelines will be used to report on included studies data. The metanalysis with usage the statistical software R version 4.1.2 (2021-11-01) “Bird Hippie” and R metaphor package 3.0–2 of will be conducted if possible.DiscussionThe goal of this systematic review is to present the association between caregivers’ mental health problems and their proteges’ cognitive impairment. It will enable to identify the gaps in literature and its methodology giving the suggestions for further research.Protocol registrationProtocol registration number in PROSPERO: CRD42022296670

Caught between competing emotions and tensions - a focus group study exploring experiences of family caregivers of out-of-hospital cardiac arrest survivors

Abstract Funding Acknowledgements Type of funding sources: None. Background/Introduction Being a family member caring for an out-of-hospital cardiac arrest (OHCA) survivor may impact family caregivers’ lives due to the sudden onset of the illness and possible secondary cognitive, emotional and physical challenges. However, experiences of caring for an OHCA survivor are sparsely described. Purpose This purpose of this study was to explore the subjective experiences of family caregivers of OHCA survivors as a means of understanding the potential burden they face. Methods Using an explorative qualitative approach, six focus group interviews were conducted with a sample of 25 family caregivers of OHCA survivors and analysed using a phenomenological hermeneutic approach inspired by the philosophy of Ricoeur. OHCA survivors and their family caregivers were attenting at a residential rehabilitation course, where the caregivers were interviewed as part of the course. Results Three themes emerged: i) Feeling unexpectedly alone and invisible; the family caregivers felt an emotional burden that could not be shared – leading to caregiving being a lonely and anxious experience. The family caregiver felt alone with the responsibility of the shared life, ii) Fear of loss; the fear of losing a loved one was a constant companion contributing to the burden of caregiving, and iii) Adjusting to a new everyday life; the family caregivers had difficulties adjusting to living their lives on the basis of the survivors’ needs. This often resulted in an existential crisis trying to adapt (Figure 1). Conclusion The findings of this study illuminate and emphasise the burden experienced by family caregivers and how they can be caught between competing emotions and tensions. The possible caregiver burden following OHCA should be acknowledged. Systematic screening is needed to identify those at risk of high caregiver burden. Further, collaboration with family care givers should be an essential part of post-cardiac arrest care, and interventions to reduce the burden should be tested and implemented as part of the clinical care of OHCA survivors and their families.

A Pitstop for a Life in the Pits: The Care of the Severely Demented in a Community Hospital

We describe a case of an elderly lady’s journey with severe dementia through a community hospital. Community hospitals play an important role in transitional care for elders with complex needs and their families to recalibrate the goals of care and optimise function after tumultuous stays in acute hospitals. We explore how the community hospital helped to break the vicious cycle of re-hospitalisation of our patient despite her dismal disease trajectory and address the complications of feeding difficulties and high caregiver burden. We also share practical advice on how a stay in a community hospital added value to the long-term care of similar elders.

A cluster analysis to explore the burden of primary caregivers of children with cancer in Oman.

Few studies have sought to evaluate the risk burden of primary caregivers, particularly in Oman. This study aimed to explore whether different risk patterns of caregiver burden exist among the primary caregivers of Omani children with leukemia. A cross-sectional study was conducted between May and November 2020. A total of 101 primary caregivers of children with leukemia were recruited from a public hospital in Oman. The Caregiver Burden Inventory (CBI) was used to assess caregiver burden. A two-step cluster analysis indicated that the cohort was not homogeneous (silhouette value: 1.41). Caregivers in Cluster 1 (n = 42; 41.6%) were relatively older, less educated, and had a higher caregiving burden (mean CBI score: 37.7 ± 19.9). In contrast, caregivers in Cluster 2 (n = 59; 58.4%) were younger, more highly educated, and had a moderate caregiving burden (mean CBI score: 26.3 ± 13.6). As such, Clusters 1 and 2 were characterized as the "high-risk" and "moderate-risk" burden groups, respectively. This study highlights the need for a policy draft to target and reduce the caregiver burden in Oman, Nursing professionals should seek to develop and implement customized care depending on the caregiver risk burden, including additional financial, psychological, and physical support. They should seek to stratify caregivers by risk burden as some groups may require additional support. However, in light of recent precautionary measures due to the current pandemic situation, such services will have to be provided online or via telephone instead of in person for the foreseeable future.

Relationship between Activities of Daily Living of Home-Based Rehabilitation Users and Caregiver Burden-Induced Depression: A Retrospective Study.

This study was aimed at determining the cutoff values of activities of daily living (ADL) and the combination of related factors associated with high caregiver burden that induces depression among caregivers. The study participants included 50 pairs of home-based rehabilitation users and their primary caregivers. They were classified into two groups: high-burden and low-burden groups according to the short version of the Japanese version of the Zarit Caregiver Burden Interview score of ≥13 or ≤12, respectively. The cutoff values of ADL and the combination of related factors associated with high caregiver burden were examined using the receiver operating characteristic curve and decision tree analyses. The cutoff value associated with high caregiver burden was 5 points for the controlling bladder item of the Barthel index (BI) (sensitivity: 90%, specificity: 70%). Regarding the decision tree, the controlling bladder item of BI (≤5 or 10 points) was selected as the first layer and the recipient's age (≤78 or ≥79 years) as the second layer. High caregiver burden was identified in 85.7% of the caregivers in whom the score of controlling bladder of BI was ≤5 points and the patient was aged ≤78 years. A score of ≤5 points for the controlling bladder item of BI along with young recipient age was associated with high caregiver burden that induces depression among caregivers. This approach is useful to identify caregivers with high caregiver burden who are at risk for depression.

Unexpected challenges faced by caregivers of children with neurogenic bladder: A qualitative study

Management of the neurogenic bladder is variable, complex, and often requires a demanding bladder care regimen which may present caregiver burdens that are unique among chronic disease. While research into patient quality of life is increasing, parallel study of the caregiver experience is scant. Existing research primarily comprises survey data using validated instruments originally developed for non-urologic conditions, such as dementia. These surveys may detect high caregiver burden and decreased quality of life amongst caregivers but are limited in their ability to understand the underlying causes. To characterize the experience of those caring for children with neurogenic bladders, with a focus on unexpected burdens and challenges. In light of limited existing research, a qualitative research methodology was selected to explore the caregiver experience. Semi-structured phone interviews were conducted with primary caregivers of children with neurogenic bladder, all of whom were patients in the pediatric urology department of a single tertiary pediatric referral center. Purposive sampling was used to ensure diverse representation. Interviews were recorded, transcribed, and professionally translated if needed. Transcripts were analyzed using a team-based inductive grounded-theory approach, facilitated by ATLAS. ti software. Member-checking focus groups were held to validate the results. Twenty-five caregivers were interviewed (20 in English, 5 in Spanish), at which point thematic saturation was reached. Three primary themes emerged surrounding the topic of unexpected challenges: 1. High caregiver burden, 2. Challenges with catheterization and supplies, 3. Urinary tract infections. Member-checking focus groups validated the thematic analysis and provided additional insights into mitigating factors for these challenges. A child's independence with his or her health care regimen was cited as particularly important for decreasing caregiver burden. Caregivers of children with neurogenic bladder report their role is more difficult than they anticipated it would be. Catheterization represents a particularly burdensome task, and recurrent infections are an unexpected and persistent medical challenge. Understanding unexpected challenges that caregivers face will help pediatric urologists target modifiable factors to decrease caregiver burden, address current gaps in counseling and expectation-setting, and set the stage for more complete shared decision-making. This study represents an initial qualitative characterization of the experience caring for a child with neurogenic bladder. This is a key first step in understanding how caregivers make decisions for their children and their families. This initial study is foundational to a larger project to create a decision aid for caregivers of children with neurogenic bladder.

Associations between occupational balance, subjective health, and well-being of informal caregivers of older persons based on a cross-sectional study

ObjectivesPopulation ageing leads to a noticeable increase in demand for informal care. Informal caregivers experience high caregiver burden, such as restricted subjective health and well-being. Occupational balance is associated with subjective health and well-being. However, associations between occupational balance and subjective health and well-being of informal caregivers of older persons have not been investigated yet. Thus, the objective of this study was to explore associations between occupational balance and subjective health and well-being of informal caregivers of older persons.MethodsFrom September 2016 to July 2020, a cross-sectional multicenter study design was employed in Austria. Informal caregivers’ occupational balance, subjective health, and well-being as well as comorbidity of persons to be cared for were assessed with seven self-reported questionnaires. Spearman’s rank correlation coefficients rs were calculated to determine associations between occupational balance and subjective health and well-being of informal caregivers of older persons.ResultsIn total 118 informal caregivers, 102 (86%) female, and their persons to be cared for, 70 (59%) female, were considered for analyses. Median age was 58 years for informal caregivers and 81 years for persons to be cared for. Informal caregivers reported restrictions in occupational balance, subjective health, and well-being. Persons to be cared for showed comorbid health conditions. Significant associations between occupational balance and determinants of subjective health and well-being were identified (rs − 0.30 – 0.69; p ≤ 0.01).ConclusionsAs population ageing and the demand for informal care progress, efforts to support informal caregivers and to strengthen their occupational balance, subjective health and well-being are vital.

Sensitivity of the Social Behavior Observer Checklist to Early Symptoms of Patients With Frontotemporal Dementia.

Changes in social behavior are common symptoms of frontotemporal lobar degeneration (FTLD) and Alzheimer disease syndromes. For early identification of individual patients and differential diagnosis, sensitive clinical measures are required that are able to assess patterns of behaviors and detect syndromic differences in both asymptomatic and symptomatic stages. We investigated whether the examiner-based Social Behavior Observer Checklist (SBOCL) is sensitive to early behavior changes and reflects disease severity within and between neurodegenerative syndromes. Asymptomatic individuals and patients with neurodegenerative disease were selected from the multisite ALLFTD cohort study. In a sample of participants with at least 1 time point of SBOCL data, we investigated whether the Disorganized, Reactive, and Insensitive subscales of the SBOCL change as a function of disease stage within and between these syndromes. In a longitudinal subsample with both SBOCL and neuroimaging data, we examined whether change over time on each subscale corresponds to progressive gray matter atrophy. A total of 1,082 FTLD pathogenic variant carriers and noncarriers were enrolled (282 asymptomatic, 341 behavioral variant frontotemporal dementia, 114 semantic and 95 nonfluent variant primary progressive aphasia, 137 progressive supranuclear palsy, and 113 Alzheimer disease syndrome). The Disorganized score increased between asymptomatic to very mild (p = 0.016, estimate = -1.10, 95% CI = -1.99 to -0.22), very mild to mild (p = 0.013, estimate = -1.17, 95% CI = -2.08 to -0.26), and mild to moderate/severe (p < 0.001, estimate = -2.00, 95% CI = -2.55 to -1.45) disease stages in behavioral variant frontotemporal dementia regardless of pathogenic variant status. Asymptomatic GRN pathogenic gene variant carriers showed more reactive behaviors (preoccupation with time: p = 0.001, estimate = 1.11, 95% CI = 1.06 to 1.16; self-consciousness: p = 0.003, estimate = 1.77, 95% CI = 1.52 to 2.01) than asymptomatic noncarriers (estimate = 1.01, 95% CI = 0.98 to 1.03; estimate = 1.31, 95% CI = 1.20 to 1.41). The Insensitive score increased to a clinically abnormal level in advanced stages of behavioral variant frontotemporal dementia (p = 0.003, estimate = -0.73, 95% CI = -1.18 to -0.29). Higher scores on each subscale corresponded with higher caregiver burden (p < 0.001). Greater change over time corresponded to greater fronto-subcortical atrophy in the semantic-appraisal and fronto-parietal intrinsically connected networks. The SBOCL is sensitive to early symptoms and reflects disease severity, with some evidence for progression across asymptomatic and symptomatic stages of FTLD syndromes; thus, it may hold promise for early measurement and monitoring of behavioral symptoms in clinical practice and treatment trials. This study provides Class II evidence that the SBOCL is sensitive to early behavioral changes in FTLD pathogenic variants and early symptomatic individuals in a highly educated patient cohort.

Predictors of nursing home placement at 2years in Alzheimer's disease: A follow-up survey from the THERAD study.

ObjectivesNursing Home Placement (NHP) can prove to be the only solution to some dead‐end situations in Alzheimer's disease (AD). The predictors of NHP are known and can be related to either the person with dementia or his/her caregiver. We aimed to identify predictors of NHP among people with AD over a 2‐year follow‐up period, with a particular interest in the modifiable predictors, notably those involving caregivers.MethodsWe studied data from the THERAD study, a French monocentric randomized controlled trial, involving 196 community‐dwelling dyads, primarily assessing an educational intervention in AD. We performed a bivariate analysis followed by a multivariate Cox model, with a backward stepwise procedure.ResultsThe mean age of the patients was 82 years old, 67.7% were women and 56.9% were living with a partner. The mean age of the caregivers was 65.8 years old, 64.6% were women and half were spouses of the patients with a moderate burden. During the follow‐up, 23 patients died and 49 were institutionalized. The majority of NHPs occurred during the first year (35 NHP). The mean time to NHP was 27.77 months after the diagnosis. Five independent predictors of NHP were found: a higher patient education level (aHR 6.31; CI95% = 1.88–21.22), a high caregiver Burden (aHR 3.97; CI95% = 1.33–11.85), the caregiver being the offspring of the patient (aHR 2.92; CI95% = 1.43–5.95), loss of autonomy (aHR 2.75; CI95% = 1.13–6.65) and disinhibition as a behavioural and psychological symptoms of dementia (BPSD) (aHR 2.38; CI95% = 1.26–4.47).ConclusionsOur data are in accordance with the literature in identifying loss of autonomy, burden and BPSD (disinhibition) as risk factors of NHP. We also found high patient education level and status of offspring caregiver as additional factors. It is essential to take into account the caregiver status when designing psychoeducational trials aiming to delay NHP. Further studies need to take into account both the modifiable risk factors related to the patient (productive BPSD) and the needs of offspring caregivers (work–life balance, mental load).

Posttraumatic stress disorder service dogs and the wellbeing of veteran families

ABSTRACT Background Benefits and challenges associated with service dogs for veterans with posttraumatic stress disorder (PTSD) may extend beyond veterans to their families. Objective The purpose of the current study is to evaluate the impact of veterans’ PTSD service dogs on spouses and families in a parallel-group, longitudinal design with assessments at baseline and three months follow-up. Method A total of 88 United States military veteran spouses completed a survey composed of multiple standardized measures at baseline and three months later. In the intervention group (n = 48), veterans received service dogs shortly after baseline while the waitlist control group (n = 40) did not. Results Linear regression analyses demonstrated significantly lower caregiver satisfaction, higher caregiver burden and higher participation in life activities among spouses who had service dogs in their homes compared to those on the waitlist. Though not significant, small effect sizes were present among additional measures. Conclusion Results suggest that although previous literature demonstrates service dogs may offer significant improvements for veterans, spouses and children may not experience those same benefits. Clinicians should consider how to prepare veteran spouses and families for integrating service dogs into their home. Future studies should explore family-focused approaches for service dog integration, defining an optimal strategy for the benefit of the entire family. HIGHLIGHTS Though service dogs may improve wellbeing for veterans with posttraumatic disorder, families of veterans may not experience those same benefits. Researchers and clinicians should consider how to best prepare veteran families for integrating service dogs into their homes. Though posttraumatic stress disorder (PTSD) service dogs are trained specifically for veterans, recent studies have demonstrated that their impact may go beyond veterans themselves (McCall, Rodriguez, Wadsworth, Meis, & O’Haire, 2020; Nieforth, Craig, Behmer, MacDermid Wadsworth, & O’Haire, 2021). PTSD service dogs may provide both benefits and challenges for veteran families.

Caregiver burden, and parents' perception of disease severity determine health-related quality of life in paediatric patients with intoxication-type inborn errors of metabolism

BackgroundLiving with a non-acute (phenylketonuria) or acute (e.g. urea cycle disorders, organic acidurias) intoxication-type inborn error of metabolism (IT-IEM) can have a substantial impact on health-related quality of life (HrQoL) of paediatric patients and their families. Parents take primary responsibility for treatment monitoring and experience worry and fear about their child's health status. Quantitative evidence on parental psychological factors which may influence the HrQoL of patients with IT-IEM are sparse to non-existent. MethodsIn this multicenter survey study 50 parents of IT-IEM patients (ages 5–19) assessed the severity of their child's disease, reported on caregiver burden, and proxy-rated their child's HrQoL. Additionally, 35 patient self-reports on HrQoL were obtained (n = 16 female patients, n = 19 male patients). Multiple linear regressions were conducted to examine the predictive power of child age, sex, medical diagnosis type (acute / non-acute), parental perceived disease severity and caregiver burden on patients' HrQoL. Mediation analyses were used to investigate the relation of caregiver burden and parental ratings of disease severity with patients' HrQoL. ResultsSignificant regression models for self-reported [F(5,34) = 10.752, p < .001, R2 adj.. = 0.59] and parent proxy reported HrQoL [F(5,49) = 20.513, p < .001, R2 adj.. = 0.67] emerged. High caregiver burden and perceived disease severity predicted significantly lower patient self- and proxy-reported HrQoL while type of diagnosis (acute versus non-acute) did not. Female sex predicted significantly lower self-reported HrQoL. High caregiver burden was the mediating factor between high perceived severity of the child's disease and lower proxy- by parent rated HrQoL. ConclusionDetecting elevated burden of care and providing support for parents seems crucial to prevent adverse consequences for their children's HrQoL. Intervention studies are needed, to assess which support programs are most efficient.

Time trends in cancer and dementia related hospital admissions among Medicare fee-for-service population, 2013–2018

Cancer and dementia are two complicated morbidities that are commonly found in older adults and require substantial healthcare resources.[ [1] Caba Y. et al. The impact of dementia on cancer treatment decision-making, cancer treatment, and mortality: a mixed studies review. JNCI Cancer Spectr. 2021; 5: 1-18 Crossref Google Scholar , [2] McWilliams L. et al. A systematic review of the prevalence of comorbid cancer and dementia and its implications for cancer-related care. Aging Ment Health. 2017; : 1-18 Google Scholar ] Caring for patients with the co-presence of cancer and dementia, who suffer from impaired cognitive function with complex medical needs, is challenging for clinicians, caregivers, and healthcare systems. With the aging US population, the increasing number of older adults with these two comorbid conditions is likely to place a high demand on hospitals. Meanwhile, the shift of care delivery from inpatient to settings such as outpatient and homes, increasing reliance on family caregivers, and improved community care support may help reduce unnecessary hospitalizations.[ 3 2021 Alzheimer's disease facts and figures Alzheimers Dement. 2021; 17: 327-406 Crossref PubMed Scopus (739) Google Scholar , 4 Federman A.D. et al. Association of a bundled hospital-at-home and 30-day postacute transitional care program with clinical outcomes and patient experiences. JAMA Intern Med. 2018; 178: 1033-1040 Crossref PubMed Scopus (88) Google Scholar , 5 Handley N.R. Bekelman J.E. The oncology hospital at home. J Clin Oncol. 2019; 37: 448-452 Crossref PubMed Scopus (23) Google Scholar ] It is important to understand the pattern of hospitalization, which is one of the major drivers of healthcare costs and high financial and caregiving burden for patients and their families, among the growing population with cancer and dementia. While there has been extensive research on the incidence, prevalence, and healthcare utilization among older adults with either cancer or dementia, existing literature examining older adults with both conditions is scarce and limited in scope. [ [1] Caba Y. et al. The impact of dementia on cancer treatment decision-making, cancer treatment, and mortality: a mixed studies review. JNCI Cancer Spectr. 2021; 5: 1-18 Crossref Google Scholar , [2] McWilliams L. et al. A systematic review of the prevalence of comorbid cancer and dementia and its implications for cancer-related care. Aging Ment Health. 2017; : 1-18 Google Scholar , [6] Kedia S.K. et al. Health care utilization among elderly medicare beneficiaries with coexisting dementia and cancer. Gerontol Geriatr Med. 2017; 3 (p. 2333721416689042) Crossref PubMed Google Scholar , [7] Liu B. et al. Trends of hospitalizations among patients with both cancer and dementia diagnoses in New York 2007-2017. Healthc (Amst). 2021; 9100565 Google Scholar ] In particular, no national estimates exist regarding the hospitalization rates among older adults with comorbid cancer and dementia. To fill this gap, we examined the national and state-level trends in hospitalization rates among Medicare fee-for-service (FFS) beneficiaries with the co-presence of a major cancer (breast, prostate, lung, and colorectal) and dementia diagnoses. We hypothesized a growing trend of inpatient use among this population during the years 2013–2018. Due to the heterogeneity in cancer-specific prognosis and treatment, we also examined the trend of hospitalizations among this population by cancer types.

Agitation Prevalence in People With Dementia in Australian Residential Aged Care Facilities: Findings From Machine Learning of Electronic Health Records.

Using a suite of artificial intelligence technologies, the current study sought to determine the prevalence of agitated behaviors in people with dementia in residential aged care facilities (RACFs) in Australia. Computerized natural language processing allowed extraction of agitation instances from the free-text nursing progress notes, a component of electronic health records in RACFs. In total, 59 observable agitated behaviors were found. No difference was found in dementia prevalence between female and male clients (44.1%), across metropolitan and regional facilities (42.1% [SD = 17.9%]), or for agitation prevalence in dementia (76.5% [SD = 18.4%]). The top 10 behaviors were resisting, wandering, speaking in excessively loud voice, pacing, restlessness, pushing, shouting, complaining, frustration, and using profane language. Four to 17 agitated behaviors coexisted in 53% of people with dementia agitation, indicating high caregiver burden in these RACFs. Improving workforce training and redesigning care models are urgent for sustainability of dementia care in RACFs. [Journal of Gerontological Nursing, 48(4), 57-64.].

Factors associated with caregiver burden of adults with epilepsy in a middle-income country

PurposeDespite the relevance of socio-economic background in burden of caregivers of persons with epilepsy (PWE), there is a dearth of knowledge about this topic in low-resource settings. Here we attempt to identify the extent of the burden in caregivers of adults with epilepsy in a middle-income country and the factors associated with it. MethodsIn this cross-sectional study, we evaluated the level of burden with the Zarit Caregiver Burden Inventory. A comprehensive questionnaire was developed to assess the demographics of patients and caregivers. Epilepsy-related factors were obtained by interview and file review. Depressive, anxiety symptoms, and sleep quality were evaluated by Beck Depression Inventory, State and Trait Anxiety Inventory, and Pittsburgh Sleep Quality Index. Stigma was evaluated by the Stigma Scale of Epilepsy. ResultsThe caregiver's burden was mild to moderate in our sample. The factors most strongly associated with the higher caregiver burden were age-onset of epilepsy, PWE years of schooling, needs for assistance in daily life, disabilities, and caregiver's bad-quality of sleep and higher depressive and anxiety symptoms. ConclusionCaregivers of PWE deserve special attention regarding mental health and other health aspects, such as sleep quality.

Drivers of caregiver impact in Duchenne muscular dystrophy: a cohort study

BackgroundIn our companion paper, we addressed the interplay between caregiver impact, out-of-pocket expenditures, and Duchenne Muscular Dystrophy (DMD) disability. We found that DMD caregiver impact could be characterized by four Latent Profile Analysis impact profiles: lowest, lower middle, upper middle, and highest impact. The impact on caregivers was often but not always worse with greater out-of-pocket expenditures. Further, while the lowest-, lower-middle, and highest-impact profiles reflected low, moderate and high disability-related caregiver burden, respectively, the upper-middle profile group was quite variable in level of disability across domains. To better understand the four caregiver-impact profiles, we examine how a comprehensive set of psychosocial factors differentiate the four profile groups.MethodsPsychosocial factors assessed included demographic characteristics, quality of life (QOL), stress, cognitive appraisal, reserve-building, and general and COVID-specific resilience. Linear modeling examined relationships between impact profiles and psychosocial factors. We used effect size rather than p-value as the criterion for determining relevance of the broad range of characteristics examined.ResultsMultivariate analyses implicated stress and environmental mastery, appraisal sampling of experience, COVID-specific variables, appraisal standards of comparison, appraisal goals, demographics, appraisal combinatory algorithm, reserve-building, and resilience, in order of prominence (average eta2 = 0.29, 0.29, 0.16, 0.15, 0.09, 0.07, 0.07, 0.06, 0.05, and 0.02, respectively). On the whole, comparisons of highest-versus-lowest impact profiles revealed more and larger differences than comparisons of upper-middle versus lower-middle impact profiles. Life stress, goals, and reserve-building activities had a smaller differentiating effect in the middle groups.ConclusionA more comprehensive ‘story’ about DMD caregiver impact involves life stress, environmental mastery, COVID-specific variables, and cognitive and behavioral factors. Implications are discussed for coaching interventions to support DMD caregivers.

A Comparison of a Preliminary Version of the EQ-HWB Short and the 5-Level Version EQ-5D

ObjectivesThe EQ Health and Wellbeing Short (EQ-HWB-S) is a new broad generic measure of health and wellbeing for use in economic evaluations of interventions across healthcare, social care, and public health. This measure conceptually overlaps with the 5-level version EQ-5D (EQ-5D-5L), while expanding on the coverage of health and social care related dimensions. This study aims to examine the extent to which the EQ-HWB-S and EQ-5D-5L overlap and are different. MethodsA sample of US-based respondents (n = 903; n = 400 cancer survivors and n = 503 general population) completed a survey administered via an online panel. The survey included the EQ-HWB item pool (62 items, including 11 items used in this analysis), EQ-5D-5L, and questions about sociodemographic and health characteristics. The analysis included (Spearman’s) correlations, the comparison of patterns of response (distributions and ceiling effects), and the ability to discriminate between known groups. ResultsModerate to strong associations were found between conceptually overlapping dimensions of the EQ-5D-5L and the EQ-HWB-S (rs > 0.5, P < .001). Among respondents reporting full health on the EQ-5D-5L (n = 161, 18.23%), the EQ-HWB-S identified ceiling effects, particularly with the item “feeling exhausted.” Most EQ-5D-5L and EQ-HWB-S items demonstrated discriminative ability among those with and without physical and mental conditions, yielding medium (> 0.5) to large effect sizes (> 0.8). Nevertheless, only EQ-HWB-S items distinguished between caregivers and noncaregivers and those with low and high caregiver burden, albeit with small effect sizes (0.2-0.5). ConclusionsResults indicate a convergence between the measures, especially between overlapping dimensions, lending support to the validity of the EQ-HWB-S. The EQ-HWB-S performed similarly or better than the EQ-5D-5L among patient groups and is better able to differentiate among caregivers and respondents closer to full health.

Caregiver Burden in Caregivers of Children With Special Health Care Needs and Association With Chronic Pain.

Chronic noncancer pain (CNCP) affects millions of individuals in the United States but evidence of its prevalence among caregivers of children with special health care needs is sparse. We sought to estimate the prevalence of CNCP and its association with caregiver burden, in a nationally representative sample. Retrospective cross-sectional study using pooled Medical Expenditure Panel Survey data for 2010-2015. Within interviewed households, family groups consisting of at least 1 parent and 1 child (0-17 y) were identified. CNCP was identified by one or more International Classification of Diseases, Ninth Revision (ICD-9)-CM codes utilizing previously published approaches. Level of caregiver burden was defined using a validated screener questionnaire identifying children with high burden of care (ie, special health care needs), for example, high or low burden. We estimated prevalence of CNCP as a function of caregiver burden, as well as the association of risk factors with CNCP, including parent sociodemographic features, clinical diagnoses, and family level characteristics. We identified 46,525 caregivers of whom 3.6% reported experiencing high caregiving burden. The prevalence of CNCP was 25.5% and 14.0% among parents with high compared with low caregiving burden, respectively. Odds of CNCP were higher among parents with high compared to those with lower caregiver burden (odds ratio=1.29, 95% confidence interval=1.06-1.55). Being obese, experiencing disability, and having a mental health diagnosis were associated with higher odds of CNCP. Chronic pain is more common among caregivers with high caregiver burden. Our findings highlight the need to further explore the nature and impact of risk factors on caregiver health and disability.

Prediction of Institutionalization for Patients With Dementia in Taiwan According to Condition at Entry to Dementia Collaborative Care.

This study aimed to examine the institutionalization rate in patients with dementia in Taiwan, identify the predictors of institutionalization, and conduct a mediation analysis of caregiver burden between neuropsychiatric symptoms and institutionalization. We analyzed data from a retrospective cohort registered in dementia collaborative care (N = 518). The analyses applied univariate and multivariate Cox proportional hazard regression with Firth's penalized likelihood to assess the relationship between each predictor at entry and institutionalization for survival analysis. Thirty (5.8%) patients were censored due to institutionalization after a median follow-up of one-and-a-half years. Neuropsychiatric symptoms, loss of walking ability, and living alone predicted institutionalization. Caregiver burden may partially mediate the effects of neuropsychiatric symptoms and institutionalization. High caregiver burden due to presence of neuropsychiatric symptoms may partially contribute to institutionalization among people living with dementia in Taiwan. However, proper management of neuropsychiatric symptoms and caregiver empowerment may ameliorate institutionalization risk.

Development and Poverty Dynamics in Severe Mental Illness: A Modified Capability Approach in the Chinese Context.

Albeit poverty reduction has been listed as an overarching objective in many countries’ development plans, little is known about how development could shape poverty dynamics in disadvantaged groups. Guided by a modified capability framework, this study aimed to explore the long-term experiences of poverty dynamics in severe mental illness. Semi-structured interviews were carried out with 20 caregivers who provided care for persons with severe mental illness in Chengdu, China. Their perceptions on development, the illness, and social security were addressed. Content analysis was employed to analyze data. Participants experienced an overall improvement of life quality due to changes on urban infrastructure and transformed lifestyle. However, they were more disadvantaged while facing ability-based opportunities. These families were hindered from transferring opportunities into incomes. Negative impacts of the illness were also reflected in multiple stigma and conversion difficulties. Additionally, the high threshold for payment made those inclusive social security policies not inclusive for them. Poverty associated with severe mental illness was unlikely to be alleviated automatically within the process of development. Social isolation and high caregiving burden had aggravated poverty for those disadvantaged families. Poverty alleviation should be closely linked to the improvement in social policies in China.

Locked out during COVID-19 lockdown\u2014an online survey of relatives of people with psychotic and bipolar disorders in Norway

BackgroundMany relatives of people with psychotic and bipolar disorders experience a high caregiver burden normally. During the first COVID-19 lockdown, mental health services partly shut down in many countries. The impact on relatives is unknown.AimsExplore how relatives of people with psychotic and bipolar disorders experienced changes in treatment and service availability for their family member during the first COVID-19 pandemic lockdown in the spring of 2020, and to what extent they perceived information and support to be satisfactory. To help guide future contingency plans, we were also interested in what relatives would prioritize in the event of a future crisis.Study settingWe distributed an anonymous Norwegian online survey inviting relatives of individuals with psychotic and bipolar disorders. We distributed the survey using social media, through snowball sampling, collecting both quantitative and qualitative data. The survey was available between May and June 2020. We used systematic text condensation to analyse qualitative data.ResultsTwo hundred and seventy-nine respondents replied, mostly mothers and partners. A majority experienced a reduction in health care for their family member. Most respondents did not receive any support during the lockdown. However, most found the information they received from the mental health services regarding their family members’ treatment as sufficient. The qualitative data analysis revealed that relatives experienced three major challenges: reductions in treatment for the family member; reduced organised daily activity for the family member; and an increased caretaker load. In the case of a future lockdown, they would prefer increased access to care compared with a normal situation; increased support for relatives; and enhanced information.ConclusionsMental health services in Norway did not manage to meet the needs of patients with severe mental illness and their relatives during the first COVID-19 lockdown. To be better prepared, Norwegian mental health services should consider prioritising infrastructure to ensure access to care and support for both patients and relatives. Digital tools and telephone calls are generally well accepted as substitutes for face-to-face contact.