Higher Caregiver Research Articles

Family function, psychological distress and burden in informal caregivers of people with dementia

Abstract Background Dementia presents a public health priority due to its high global prevalence, mortality, economic cost, and caregiver burden (CB). Dementia care can be stressful and may negatively influence the health of informal caregivers. This cross-sectional study aimed to identify psychological and social factors associated with subjective CB in informal home care providers of people with dementia (PwD), controlling for sociodemographic, clinical, and care-related variables. Methods We included 115 informal caregivers of PwD from community settings (mean age: 54.0±12.4 years; 81.7% women). Participants fulfilled the Zarit Burden Interview (ZBI-12), the Patient Health Questionnaire (PHQ-9), the Generalized Anxiety Disorder Scale (GAD-7), the Family APGAR, and the short IQCODE used to assess dementia severity. Multiple linear analyses were used to analyse the data. Results The mean caregiving duration was 4.8±4.8 years, and 55.7% of informal caregivers extend care for >40 hours/week. We found that a total of 52.5 % of informal caregivers experienced a high CB (ZBI-12 cut-off score: 17). Univariate analyses showed an association between depression (β = 0.36; p < 0.001), anxiety (β = 0.52; p < 0.001), family dysfunction (β = 0.36; p < 0.001), and CB. Regression analyses showed that CB was the most strongly associated with anxiety (β = 0.51; p < 0.001). This association weakened (0.47; p < 0.01) when family function was added to the final model (β=-0.22; p < 0.05). The final model explained 23.5% of the variance in CB. No associations between the caregiver's age, sex, caregiving duration, the extent of care per day, use of community care, dementia severity, and depression were identified. Conclusions Long-term care for people living with dementia can be very demanding. Thus, the implementation of tailored interventions to enhance family function and diminish psychological distress can mitigate level of caregiver burden. [Grant support: APVV-22-0587]. Key messages • Dementia caregiving is a global public health priority. • The caregiver’s burden and distress can be alleviated by the interventions focusing on family dysfunction.

Caregiving burden, social support, and psychological well-being among family caregivers of older Italians: a cross-sectional study

ObjectivesThis study aimed to identify factors affecting the psychological well-being of family caregivers of dependent older adults in Italy. Understanding these variables is essential for designing interventions to prevent negative outcomes in at-risk caregivers. The research explored how varying levels of caregiving burden and types of perceived social support influence psychological well-being.MethodsA cross-sectional study was conducted among 387 family caregivers of older adults in the Marche region (Italy) between November 2019 and March 2020. Data were collected via a structured questionnaire assessing psychological well-being (WHO-5 Well-Being Index), caregiving burden, and social support (COPE Index). Statistical analyses were performed using Jamovi software, with a significance threshold set at p < 0.05.ResultsA significant negative correlation was found between caregiving burden and psychological well-being [r (364) = − 0.540, p < 0.001], with caregiving burden being a significant predictor of psychological well-being reduction (R2 = 0.290; F = 150, p < 0.001). A threshold value of 2 (on a 1–4 scale) was identified, where caregiving burden predicted a significant reduction in psychological well-being. Conversely, greater perceived social support was positively correlated with better psychological well-being [r (357) = 0.348, p < 0.001] and was a significant predictor of it [R2 = 0.121; F = 49.2, p < 0.001]. Support from social and health services had the most notable impact on psychological well-being. Moreover, social support mitigated the negative impact of caregiving burden on psychological well-being.ConclusionThe study confirms that high caregiving burden adversely affects caregivers’ psychological well-being, while social support plays a protective role. These findings highlight the need for interventions focused on reducing caregiving burden and enhancing support systems for family caregivers.

High caregiver adverse childhood experiences are associated with increased pediatric infection-related healthcare utilization and antibiotic use

Abstract Background Higher caregiver adverse childhood experiences (ACEs) have been associated with a range of pediatric outcomes, including hospitalizations. We recently found that higher caregiver ACEs are associated with higher rates of influenza vaccine uptake. However, to our knowledge, no studies have examined links between caregiver ACEs and specific infections or infection-related outcomes, such as antibiotics prescribed. We sought to evaluate associations between caregiver ACEs and pediatric infection-related outcomes. Methods We conducted a retrospective cohort study of two pediatric primary care sites, each serving a predominantly non-Hispanic Black, publicly insured population. At one primary care site (Clinic A), routine screenings for caregiver ACEs began in 2019 at the 1-month well-child check and were retrieved from the electronic health record. For the other primary care site (Clinic B), a prior research study surveyed caregiver ACEs of 283 children. Focusing on children 0-4 years of age in both primary care sites, we retrieved data from the electronic health record, including patient infection-related outcomes, demographic characteristics, and social risk screen results for those who had caregiver ACEs systematically recorded. The number of reported caregiver ACEs was our exposure variable, dichotomized as high (≥4) or low (≤3). Patient demographic characteristics, results of the overall social risk and maternal depression screen, and area deprivation index scores linked to patients’ geocoded home addresses were also collected. Bivariate analyses were pursued using chi square test statistics. Results A total of 1,442 children 0-4 years of age were included in the study, and 50.0% were female, 74.7% Black, and 2.6% Hispanic. Fifteen percent of caregivers had high (≥4) ACEs. Differences in infection-related outcomes, and relevant covariates, based on high and low caregiver ACEs are depicted in Table 1. Children of caregivers with high ACEs had more outpatient infection-related visits (80% versus 72.6%, p = 0.03), including more diagnoses of streptococcal pharyngitis (10.1% versus 4.1%, p = 0.0004). They also had more prescriptions for any oral antibiotic (30.9% versus 23.2%, p = 0.02). In bivariate analyses, high caregiver ACEs (31.3% versus 23.7%, p = 0.03), lower area deprivation index score (mean (SD) of 0.47 (0.16) versus 0.50 (0.16), p < 0.01), older patient age (mean (SD) of 2.73 (1.10) versus 1.73 (1.00) years, p < 0.0001), and any outpatient (35.9% versus 2.2%, p < 0.0001), emergent (40.0% versus 10.9%, p < 0.0001), or inpatient visit (42.7% versus 23.0%, p < 0.0001) were each associated with the presence of antibiotic use. Race, ethnicity, a positive social risk screen, and positive depression screen were not associated with antibiotic use. Conclusion High caregiver ACEs appear to be associated with some types of pediatric infectious diagnoses, antibiotic use and increased infection-related outpatient healthcare utilization. Future adjusted analyses assessing for potential links between ACEs and infection-related outcomes, independent of variables like insurance status, social risk, and area-level deprivation, are warranted and planned.

Factors related to high caregiver burden of wives of patients with alcohol dependence syndrome: A case-control study from Eastern India

ABSTRACT Background: The caregiver burden in psychiatric illness is profound. However, the burden on spouses of patients with ADS remains a quest for medical research. The present study was done to assess the caregiver (wives) burden in a group of patients suffering from ADS as compared with that of schizophrenia. Materials and Methods: This cross-sectional hospital-based study was conducted in the psychiatric ward. A detailed comparative assessment was done between the caregiver burden and quality of life of wives whose spouses were diagnosed with schizophrenia and alcohol dependence syndrome. Result: The average burden perceived by spouses in schizophrenia was 77.69% ±1.51 across all domains as compared with spouses of an alcohol group (78.39 ± 1.69). Factors related to high burden and low quality of life among wives of the alcoholic group were found to be residing in rural areas, living in nuclear families, critical in-laws and noncooperative family members, severely abused, and having two or more children. Discussion: The caregiver burden in the spouse of a male ADS is comparable with the burden of the spouse of schizophrenia. Spouses (wives) of addicts need more appreciation and support from the other family members mostly in-laws.

Caring for Carers: Association between Care-giving and Quality of Life of Family Carers of Spinal Cord Injury Survivors in Pakistan

Caring for someone with a spinal cord injury (SCI) has always been a family endeavor in developed as well as developing countries like Pakistan. Majority of people with SCI need assistance of others to carry out daily life activities i.e., eating, self-care, transportation and this functional dependence of patients on their attendant affect Quality of Life (QOL) of caregivers. Present study was designed to find the relationship between caregiver burden, psychosocial factors and QOL among caregivers. Caregiver Burden Inventory-SCI and WHOQOL was used to measure study variables. Cross-sectional research design having purposive sampling technique was used to gather data from spinal units of various hospitals of Pakistan. Sample size includes N= 255 family caregivers of SCI patients. Correlation analyses were applied to find the relationship between psychosocial factors, caregiver burden and QOL. Results showed that caregiver burden was significantly negatively correlated with quality of life and positively correlated with care-giving hours, duration of injury, and number of helpers involved in care-giving process. Furthermore, female caregivers showed high level caregiver burden and low levels of quality of life as compared to male counterparts. Similarly, married persons scored higher on caregiver burden and whose patients had paraplegic nature of injury. In Pakistan, there are no respite care programs for carers, The abovementioned findings are helpful in planning psychotherapeutic interventions and tailored caregiver training programs to lessen the impact of caregiver burden on caregivers and to boost their quality of life.

Profiles of resilience resources among spousal caregivers

Objectives Resilience resources play a significant role in a caregiver’s adaptation process. Previous studies have primarily focused on the effects of individual resilience resources. This study aimed to examine diverse patterns of how those multiple resources simultaneously operate in a caregiving situation with the person-centered approach. Method This study utilized data from the Health and Retirement Study. Participants were eligible if they completed the Left-Behind questionnaire at two consecutive timepoints (2014 and 2016; or 2016 and 2018) and provided care for their spouse with limitations in activities of daily living (n = 692). Results Latent profile analysis identified three distinct groups among spousal caregivers: (1) Lack of Resilience Resources (17%), (2) Low Psychological and Cognitive Resources, but Having Moderate Support (21%), and (3) Strong Resilience Resources (62%). Spousal caregivers having functional limitations (Odds = 0.37, p = 0.016) and greater depressive symptoms (Odds = 0.59, p = 0.000), and high ongoing caregiving stress (Odds = 0.37, p = 0.007) were less likely to be in ‘Strong Resilience Resources’ than ‘Lack of Resilience Resources’. Conclusion The findings highlight the importance of taking a holistic view of resilience resources. It provides insights into potentially vulnerable groups and caregivers’ adaptation process, thereby contributing to the development of interventions or policies aimed at enhancing the resilience resources of family caregivers.

Caregiver Adverse Childhood Experiences and Pediatric Infection-Related Outcomes

Abstract Background Higher caregiver adverse childhood experiences (ACEs) have been associated with multiple adverse pediatric outcomes. However, no studies have examined links between caregiver ACEs and infectious outcomes like antibiotic prescriptions or infection-related clinical encounters. Methods We conducted a retrospective cohort study including patients from two pediatric primary care sites, serving predominantly non-Hispanic Black, publicly-insured populations. Our outcomes were antibiotic prescriptions and infection-related ambulatory clinical encounters for children 0-3 years old. We captured these outcomes and additional covariates (demographics, health-related social risk screen results, and socioeconomic deprivation index scores linked to geocoded street addresses), from the electronic health record. High (≥4) or low (≤3) caregiver ACEs, and individual ACE question answers, were our exposures. Multivariable logistic regression was used to determine associations with any antibiotic use. Cox proportional hazards regression was used to assess time to first antibiotic exposure and first infection-related visit. Results A total of 1,465 children 0-3 years were included (50.0% female, 75.0% Black, 2.6% Hispanic). High caregiver ACEs were not associated with pediatric antibiotic exposure. The presence of caregiver-witnessed parental abuse was associated with higher likelihood of any antibiotic exposure (odds ratio [OR 1.90]; 95% confidence interval [CI] 1.2, 3.2) and time to first antibiotic exposure (hazard ratio [HR] 1.77; 95%CI 1.23, 2.56). Sexual abuse of the caregiver was associated with time to first infection-related clinical visit (HR 1.27; 95%CI 1.05, 1.53). Conclusions Certain caregiver ACEs were associated with pediatric antibiotic use and infection-related visits. Future studies need to evaluate underlying mechanisms and test effective clinical responses.

Qualitative Exploration of the "Guilt Gap" Among Physician-Faculty with Caregiving Responsibilities.

Introduction: Differences in time commitments and resources contribute to the difficulties of work-life integration for many physician-scientists, particularly for women with family caregiving responsibilities. Understanding the challenges faced by this population is critical for the retention of these critical members of the workforce. Methods: We conducted semi-structured telephone interviews with recipients of the 2017 Doris Duke Charitable Foundation's Fund to Retain Clinical Scientists (FRCS) and reviewed application narratives from the 2020 award recipients. Award recipients were asked about their caregiving responsibilities and careers, particularly as they related to the impact of the FRCS award and the aftereffects of the COVID-19 pandemic. Analysts then iteratively revised the coding scheme and interpreted the data using qualitative thematic analysis. Results: Of the 14 interviewees and 19 narrative contributors, 25 (76%) were women. The main qualitative themes that emerged were as follows: (1) women experience unrealistically high caregiving burdens, (2) women are overburdened by disadvantageous and undervalued expectations at work, (3) work-life expectations increased during the COVID-19 pandemic, and (4) unrealistic work-life expectations led to guilt and burnout. Conclusions: These findings provide a rich understanding of the factors contributing to guilt and burnout among physician-scientists, particularly women, and how work duties that increase physician obligations exacerbated these challenges. Understanding these experiences is critical to supporting and retaining a diverse workforce in academic medicine.

Family member reported symptom burden, predictors of caregiver burden and treatment effects in a goal-oriented community-based randomized controlled trial in the chronic phase of traumatic brain injury

BackgroundFamily members are often affected by the long-term consequences of traumatic brain injury, but are rarely involved in rehabilitation programs in the chronic phase. We thus do not know what family members´ main concerns are in the chronic phase, what factors are associated with perceived caregiver burden, and whether family members´ health and functioning improves due to rehabilitation efforts received by the patients. This study explored family-members` functioning, predictors of caregiver burden and effect for family members of a goal-oriented intervention in the chronic phase of traumatic brain injury.MethodsFamily members self-reported data measuring their caregiver burden, depression, general health, loneliness, and their evaluation of patient competency in everyday life, patient awareness levels, main problem areas (target outcomes) for the patient related to the brain injury, and demographic data were collected. Regression models were used to explore predictors of caregiver burden, and mixed models analysis was used to explore treatment effects.ResultsIn total, 73 family members were included, 39 in the intervention group and 34 in the control group. Moderate to high caregiver burden was reported by 40% of family members, and 16% experienced clinical levels of depression. Family member loneliness and their evaluation of the patient`s level of functional competency explained 57% of the variability in caregiver burden. There were no treatment-related changes in caregiver burden, family member depression or general health. At T2 there was however a significant reduction in how family members rated severity of target outcomes that the family members had nominated at baseline (-0.38, 95% CI, -0.75 to -0.02, p = 0.04), but not for the target outcomes the patients had nominated.ConclusionsA significant proportion of family members to patients in the chronic phase of TBI continue to experience challenging caregiver burden and emotional symptoms. Both family member-related and patient factors contribute to caregiver burden. Interventions targeting patient complaints do not automatically alleviate family members´ burden. It is important to address social support for family members early after injury, and there is a need for more interventions specifically targeting family members´ needs.Trial registrationThe trial was registered at ClinicalTrials.gov, NCT03545594 on the 4th of June 2018.

Factors Associated with Increased Burden of Caregivers of People with Dementia with Lewy Bodies.

The burden of caregivers of people with dementia with Lewy bodies (DLB) is high; however, factors related to their caregiving burden are not fully clarified. We herein investigated factors associated with increasing caregiver burden for caregivers of people with DLB. To explore factors associated with caregiver burden, a linear regression analysis was conducted using the J-ZBI_8 total score as the dependent variable and a total of 36 factors as independent variables. This analysis included 252 pairs of people with DLB and their caregivers. Caregivers' mean J-ZBI_8 was 8.4, indicating that caregiver burden was generally high. First, we identified 20 factors associated with caregiver burden in univariable analysis. Finally, multivariable analysis found three significant factors: irritability (β = 0.208, p < 0.001), use of "short stay" or "small-scale, multifunctional home care" (β = 0.208, p < 0.001), and nighttime behavior (β = 0.138, p = 0.020) were significantly associated with J-ZBI_8 total scores. Irritability and nighttime behavior were found to be contributing factors to caregiver burden. High caregiver burden among caregivers of people with DLB may result in the use of social services providing overnight stays, but to what extent such services reduce caregiver burden is unknown.

Mortality and Function After Widowhood Among Older Adults With Dementia, Cancer, or Organ Failure

The widowhood effect, in which mortality increases and function decreases in the period following spousal death, may be heightened in older adults with functional impairment and serious illnesses, such as cancer, dementia, or organ failure, who are highly reliant on others, particularly spouses, for support. Yet there are limited data on widowhood among people with these conditions. To determine the association of widowhood with function and mortality among older adults with dementia, cancer, or organ failure. This longitudinal cohort study used population-based, nationally representative data from the Health and Retirement Study database linked to Medicare claims from 2008 to 2018. Participants were married or partnered community-dwelling adults aged 65 years and older with and without cancer, organ failure, or dementia and functional impairment (function score <9 of 11 points), matched on widowhood event and with follow-up until death or disenrollment. Analyses were conducted from September 2021 to May 2024. Widowhood. Function score (range 0-11 points; 1 point for independence with each activity of daily living [ADL] or instrumental activity of daily living [IADL]; higher score indicates better function) and 1-year mortality. Among 13 824 participants (mean [SD] age, 70.1 [5.5] years; 6416 [46.4%] female; mean [SD] baseline function score, 10.2 [1.6] points; 1-year mortality: 0.4%) included, 5732 experienced widowhood. There were 319 matched pairs of people with dementia, 1738 matched pairs without dementia, 95 matched pairs with cancer, 2637 matched pairs without cancer, 85 matched pairs with organ failure, and 2705 matched pairs without organ failure. Compared with participants without these illnesses, widowhood was associated with a decline in function immediately following widowhood for people with cancer (change, -1.17 [95% CI, -2.10 to -0.23] points) or dementia (change, -1.00 [95% CI, -1.52 to -0.48] points) but not organ failure (change, -0.84 [95% CI, -1.69 to 0.00] points). Widowhood was also associated with increased 1-year mortality among people with cancer (hazard ratio [HR], 1.08 [95% CI, 1.04 to 1.13]) or dementia (HR, 1.14 [95% CI, 1.02 to 1.27]) but not organ failure (HR, 1.02 [95% CI, 0.98 to 1.06]). This cohort study found that widowhood was associated with increased functional decline and increased mortality in older adults with functional impairment and dementia or cancer. These findings suggest that persons with these conditions with high caregiver burden may experience a greater widowhood effect.

Association between apathy and caregiver burden in patients with amyotrophic lateral sclerosis: a cross-sectional study

ObjectivesTo investigate the relationship among patients’ apathy, cognitive impairment, depression, anxiety, and caregiver burden in amyotrophic lateral sclerosis (ALS).DesignA cross-sectional study design was used.SettingThe study was conducted at a tertiary...

Caregiving management needs and predictors for family caregivers of persons with dementia: a cross-sectional study

BackgroundFamily caregivers of persons with dementia are faced with complex caregiving management needs. This study had two aims: (1) to identify caregiving management needs of family caregivers of persons with dementia and (2) identify any variables that might influence these needs.MethodsThis cross-sectional study recruited family caregivers of persons with dementia (N = 250) through referrals from clinicians at a dementia outpatient clinic in Northern Taiwan. Data were collected with a 32-item researcher-developed instrument, the Caregiving Management Needs Scale (CMNS), to identify management needs specific to family caregivers of persons with dementia. The CMNS was comprised of questions about the types of assistance or support family caregivers would like to receive to facilitate caregiving.ResultsCMNS scores indicated caregivers had moderate management needs. Caregivers of relatives with a moderate severity of dementia had significantly higher scores on the CMNS compared with caregivers of persons with very mild dementia (p < 0.01). Linear regression analysis indicated significant predictors of high caregiving management needs were caregivers who were female (p < 0.01), and persons with dementia with behavioral problems (p < 0.01), low scores for Activities of Daily Living (p < 0.01), regular medication adherence (p < 0.01), and use of long-term care services (p < 0.001) were significant (F[13, 236] = 7.12; p < 0.001; R2 = 28.2%).ConclusionsUnderstanding variables and predictors of caregiving management needs for family caregivers could reduce the complexity of caregiving.Trial RegistrationClinicalTrials.gov NCT05151185

2265 Patient experience and outcome measures in virtual wards at Swansea Bay university health board.

Abstract Introduction Swansea Bay Health Board is covered by eight community clusters (240 virtual beds), each with their own Virtual Ward (VW) MDT which provides community based Comprehensive Geriatric Assessment and reablement. The VW governance structure includes the routine collection of person-centred metrics. There is no recognised PROM or PREM specifically designed for needs of frail older people and PROMsand PREMsare rarely used to inform quality and continuity in services at transitions of care (e.g. at discharge from hospital). Methods VW data from June 2023 to February 2024 was analysed. Patient-reported outcomes and experiences (PROMS and PREMS) were collected by the VW team at set timepoints in the patient journey. Data was collected using the PRO-MAPP digital interface ensuring inter-user consistency. Results 1858 VW patients, 1094 (58.9%) female, median age 86 years. The majority, 1044 (56.2%) were referred from secondary care, primarily from acute frailty services, with the remainder identified by primary care. In total, 418 PROMS and 344 PREMS were collected. PROMS—Reported improvements in mobility, self-care, usual activities, pain and anxiety &amp; depression (p &amp;lt; 0.001) after VW input. PREMS—The majority of patients found the VW had been explained well prior to referral (84.0%), were contacted promptly (95.6%), staff were professional and friendly (100%), provided patient-centred care (94.2%), staff were contactable (92.4%), were glad they avoided or reduced the length of hospital admission (95.3%). When speaking with 72 care-givers, they were happy the patients’ needs were met (100%) and the VW positively impacted their lives as carers (90.1%). Discussion There was high patient and care-giver satisfaction with the VW service. PROM data suggested a significant positive impact on patient outcomes. Not all the patients referred to the VW have been sampled which is a missed opportunity and there was a variability between data collection between clusters.

Utilizing the Summer Treatment Program Model to Promote School Readiness in Young Children Living in Urban Poverty: An Initial Effectiveness Open Trial

ABSTRACT Access to, and engagement in, quality mental health care for young children with externalizing behavior problems (EBPs) who are living in urban poverty is limited. Innovative efforts to engage families in early intervention are needed to ensure school success. The goals of the current study were to transport the Summer Treatment Program for Prekindergartners (STP-PreK, an adaptation of the Children’s Summer Treatment Program and evaluate the implementation and initial program promise for children living in urban poverty via an open trial. Participants were 115 preschool children (68.7% male; 84.3% Black) with EBPs and their caregivers. Nearly all the participating families were living with low to extremely low incomes. Participants received a 7-week STP-PreK, including a daily school readiness program and weekly behavioral parenting training. Implementation outcomes were measured via attendance records, satisfaction ratings, and fidelity measures. Program promise was measured via caregiver ratings and child assessments, collected pre-, post-, and at 6 months following the intervention. On average, results demonstrate strong feasibility and acceptability with high child attendance (90.56%) and caregiver satisfaction with services. Intervention effects across domains of child functioning reveal medium-to-large effects on academics (d’s = 0.46–1.95), overall impairment (d = 0.79), behavioral functioning (d’s = 0.38 – 0.84), and executive functioning (d = 0.58). Effects were largely maintained at 6-month follow-up (d’s = 0.13–1.86). Overall, the results support the promise of the STP-PreK model in enhancing school readiness outcomes for young children at-risk. Directions for continued adaptation and future research are discussed.

Association Between Caregiver Strain and Self-Care Among Caregivers With Hypertension: Findings From the REGARDS Study.

Self-care for adults with hypertension includes adherence to lifestyle behaviors and medication. For unpaid caregivers with hypertension, the burden of family caregiving may adversely impact self-care. We examined the association between caregiver strain and hypertension self-care among caregivers with hypertension. We included participants of the REGARDS (Reasons for Geographic and Racial Differences in Stroke) study who identified as caregivers and had hypertension. Caregiver strain, assessed by self-report, was categorized as "none/some" or "high." Hypertension self-care was assessed individually across 5 domains (Dietary Approaches to Stop Hypertension [DASH] diet, physical activity, alcohol use, cigarette smoking, and medication adherence) and a composite self-care score summing performance across them. The association between caregiver strain and hypertension self-care was examined with multivariable linear regression. Among the 2128 caregivers with hypertension, 18.1% reported high caregiver strain. Caregivers with high strain versus those with none/some were less adherent to the DASH diet (50.8% versus 38.9%, P<0.002), physically inactive (44.4% versus 36.2%, P<0.009), current smokers (19.7% versus 13.9%, P<0.004), and had lower overall self-care scores (6.6 [SD 1.7] versus 7.0 [SD 1.7], P<0.001). In an age-adjusted model, high caregiver strain was associated with worse hypertension self-care (β=-0.37 [95% CI, -0.61 to -0.13]); this remained significant but was reduced in magnitude after adjustment for sociodemographics (β=-0.35 [-0.59 to -0.11]), comorbidities (β=-0.34 [-0.57 to -0.10]), caregiving intensity (β=-0.34 [-0.59 to 0.10]), and psychological factors (β=-0.26 [-0.51 to 0.00]). High caregiver strain was associated with worse hypertension self-care overall and across individual domains. Increased awareness of caregiver strain and its potential impact on hypertension self-care is warranted.

Predictors of perceived caregiver strain in carers of patients living with heart failure: data from a collectivist society

Abstract Background Informal caregivers are individuals voluntarily caring for someone facing a disease, disability, or any condition requiring particular attention.1 They provide around 90% of in-home care and play a key role in supporting the wellbeing and care of people living with chronic illnesses.2 Such diagnoses alter roles within the family unit and cause feelings of uncertainty, anxiety, depression, resentment, among others. This is true in caregivers of patients living with Heart Failure [HF]. High care dependency and lack of formal support for caregiving have increased the prevalence of caregiver strain. Purpose To describe caregiver strain and identify its determinants among caregivers of patients living with HF. Methods This was a cross-sectional correlational study. Caregivers were assessed for caregiver strain (Modified Caregiver Strain Index [MCSI]), social support (Carers of Older People in Europe Index [COPE]), and quality of life (QOL; Short Form 12). MCSI scores were compared across dyadic variables and then used as the outcome variables to create the regression model. Results 108 patients (age 63.54 ± 10.52 years, 70.4% males, 81.55% married) and caregivers (age 49.37 ± 13.69 years, 14.8% males, 82.2% married) were included. More than 80% of the dyads lived in the same household. Caregivers have been assuming this role for an average of 8.53 years and a mean of 37.73 hours per week. Almost 50% of the caregivers reported providing minimal care for their patient while 35% reported providing full care. An alarming 67.6% of the dyads were considered discordant and did not agree on how and by who the care is performed. Caregiver strain was average in this sample with a mean of 11.32 ± 6.94. Caregivers who provided full care had significantly higher caregiver strain (13.75 ± 6.16 versus 9.82 ± 7.16; F (2,76) = 3.329, p = 0.041). Poor caregiver perceived quality of the dyad was significantly associated with higher caregiver strain (16.07 ± 6 versus 10.71 ± 6.9; p &amp;lt; 0.001). Caregivers of symptomatic patients had lower caregiver strain than caregivers of asymptomatic patients (9.90 ± 7.43 versus 12.69 ± 6.21; p = 0.019). Being stressed in caregiving was significantly associated with higher caregiver strain (r = 0.774; p &amp;lt; 0.001). Having lower physical and/or mental QOL were associated with higher strain (r = -0.291 and -0.536 respectively; p &amp;lt; 0.001). Finally, a higher negative impact from caregiving, a lower mental and physical QOL, and a lower relationship quality explained about 63% of the variance in Caregiver Strain (F = 44.001; p &amp;lt; 0.001). Conclusion Knowledge from this study will help place caregivers’ health at the core of caregiving processes. HF nurses and physicians should start giving special attention to caregivers of HF patients who show signs if high caregiver strain. Interventions to reduce strain should be designed to address caregivers’ appraisal of dyad relationship quality, instrumental social support, and QOL.

Following Through: The Impact of Culinary Medicine on Mediterranean Diet Uptake in Inflammatory Bowel Disease.

The Mediterranean diet (MD) is recommended for all patients with inflammatory bowel disease (IBD) unless there is a specific contraindication. Culinary medicine has emerged as a method for improving dietary education. Patients and caregivers are often invested in making dietary changes to improve disease control. Here, we examine the dietary preferences of a group of young people with IBD and apply culinary medicine techniques with an in-person MD-focused cooking class. A survey evaluating dietary attitudes was sent to an IBD email listserv at our tertiary care center (n = 779). A validated questionnaire, the Mediterranean Diet Quality Index for Children and Adolescents was used to assess MD adherence. IBD dietitians customized 2 in-person MD-focused cooking classes, one for children 6 to 12 years of age (arm 1) and one for adolescents 13 to 17 years of age (arm 2). Baseline, 1-month follow-up, and 3-month follow-up surveys were completed. There were 112 survey responses. Participants were 67.0% male with diagnosis of Crohn's disease (50.0%), ulcerative colitis (42.0%), or IBD unclassified (8.0%). Most were managed on advanced therapies (82.0%). Most reported making decisions about diet (82.0%) in order to help with IBD, had met with a dietitian (69.0%), and were interested in learning more about the MD (55.3%). MD scores were primarily in the average (49.5%) and poor (41.1%) diet categories. Only those eating together as a family 3 or more times per week or those who had met with a dietitian scored in the optimal diet category. The median MD score at baseline was 4.5, increasing to 6.0 at 1 month and 7.0 at 3 months postintervention. Almost all (90%) would recommend cooking classes to others. Common barriers to MD uptake included lack of knowledge about which foods to prepare, concern about taste, and time to prepare food. This study showcases high patient and caregiver interest in dietary management of IBD and demonstrates efficacy of education via application of culinary medicine. Classes were well received by families and MD adherence scores increased postintervention. As patients with IBD and their families are often motivated to incorporate dietary therapy into their care, this work highlights the role of culinary medicine and value of future study.

The Happy Spiritual Intervention for Overcoming Intolerance of Uncertainty among Families of Patients with Mental Disorders

Families of patients with mental disorders frequently experience intolerance of uncertainty due to prolonged treatment, high caregiving burdens, and unpredictable patient behaviors. This study was conducted to investigate the effects of Happy Spiritual Intervention on the intolerance to uncertainty among families of patients with mental disorders. A pre-post quasi-experimental study with a control group was carried out among families of patients undergoing treatment at Dr. Amino Gondohutomo Psychiatric Hospital in Semarang. Simple random sampling was applied to recruit a total of 50 respondents who were aged 18 years or older and had been cohabiting with the patients for more than five months. The intervention group received six 45-minute therapy sessions, while the control group received standard care. This study utilized the Intolerance of Uncertainty Scale as research instrument. Data were collected using Google Forms, and subsequent analysis using a t-test was performed. The results revealed a significant difference in intolerance of uncertainty among families of patients with mental disorders after the intervention in both the intervention and control groups, with an effect size of 3.026 and a p-value of 0.000. This suggests that Happy Spiritual intervention effectively reduces the intolerance of uncertainty among families of patients with mental disorders.

A Systematic Review of Telehealth Utilization for Bowel Management Programs in Pediatric Colorectal Surgery.

Recent advancements in pediatric surgery have embraced telehealth (TH) modalities, transitioning from traditional in-person consultations to virtual care. This shift has broadened access to healthcare, potentially enhancing affordability, patient and caregiver satisfaction, and clinical outcomes. In pediatric colorectal surgery, telehealth has been effectively utilized to support Bowel Management Programs (BMPs) for children suffering from constipation and fecal incontinence. A systematic review was conducted to assess the effectiveness of virtual BMPs, analyzing studies from January 2010 to December 2023, sourced from MEDLINE (via PubMed), Embase, and the Cochrane Library, with five studies included. Remote BMPs, implemented through video or telephone consultations, reported satisfaction rates exceeding 75% among families, indicating a strong preference for virtual interactions over traditional visits. Significant findings from the studies include improvements in Vancouver and Baylor scores, reductions in the duration of multidisciplinary consultations, enhancements in pediatric quality of life and Cleveland scores, and decreased frequency of laxative treatments. The implementation of TH has facilitated patient-led care, enabling timely adjustments in treatment and efficient distribution of medical supplies. The findings suggest that virtual BMPs are a viable and effective alternative to conventional approaches, yielding high caregiver satisfaction and superior clinical outcomes while promoting patient independence.