The Olera.care Digital Caregiving Assistance Platform for Dementia Caregivers: Preliminary Evaluation Study.

BACKGROUND: The increasing prevalence of Alzheimer disease and Alzheimer disease-related dementia in the United States has amplified the health care burden and caregiving challenges, especially for caregivers of people living with dementia. A web-based care planning tool, Olera.care, was developed to aid caregivers in managing common challenges associated with dementia care. OBJECTIVE: This study aims to preliminarily evaluate the quality and usability of the Olera.care platform and assess the preferences of using the technology and interests in learning about different older adult care services among caregivers. METHODS: For interview 1, we aim to understand caregiving needs and let the participants start engaging with the platform. After they engage with the platform, we schedule the second interview and let the participants complete the Mobile Application Rating Scale. The survey also included sociodemographic characteristics, caregiving experiences, communication preferences in technology adoption, and older adult care service use and interests. Descriptive statistics were used to describe the quality and usability of the platform and characteristics of the participants. We conducted 2-sample 2-tailed t tests to examine the differences in the Mobile Application Rating Scale evaluation scores by caregiver characteristics. RESULTS: Overall, 30 adult caregivers in Texas completed the evaluation. The majority were aged ≥50 years (25/30, 83%), women (23/30, 77%), White (25/30, 83%), and financially stable (20/30, 67%). The Olera.care platform evaluation showed high satisfaction, with an overall mean rating of 4.57 (SD 0.57) of 5, and scored well in engagement (mean 4.10, SD 0.61), functionality (mean 4.46, SD 0.44), aesthetics (mean 4.58, SD 0.53), and information quality (mean 4.76, SD 0.44) consistently across all participants. A statistically significant difference (P=.02) was observed in functionality evaluation scores by duration of caregiving, with caregivers dedicating more hours to care rating it higher than those providing less care (mean 4.6, SD 0.4 vs mean 4.2, SD 0.5). In addition, caregivers with less caregiving experience reported significantly higher evaluation scores for aesthetics (P=.04) and information quality (P=.03) compared to those with longer years of caregiving. All participants expressed a willingness to recommend the app to others, and 90% (27/30) rated the app overall positively. Most of the participants (21/30, 70%) favored anonymous interactions before receiving personalized feedback and preferred computer browsers over mobile apps. Medical home health services were the most used, with a diverse range of services being used. Caregiver support groups, medical providers, memory care, meal services, and adult day care were among the most desired services for future exploration. CONCLUSIONS: The Olera.care web-based platform is a practical, engaging, easy-to-use, visually appealing, and informative tool for dementia caregivers. Future development and research are essential to enhance the platform and comprehensively evaluate it among a broader population.

Experiences of family caregivers in dealing with cases of advanced breast cancer: a qualitative study of the sociocultural context in Punjab, Pakistan.

BACKGROUND: Patients with advanced breast cancer require consistent help and support from family caregivers. These caregivers often endure financial burdens and psychological stress, with their experiences significantly influenced by sociocultural factors. This study aims to explore the experiences of family caregivers of advanced breast cancer patients in Punjab province, Pakistan. METHODS: Data was collected through in-depth interviews with fifteen family caregivers of advanced breast cancer patients in three major cities of Punjab, Pakistan. Caregivers, who had been in close contact with the patient for the last two years, were purposively sampled from five major hospitals. The data was analyzed using thematic analysis. RESULTS: The study revealed that the experiences of family caregivers are deeply rooted in the sociocultural context. Key themes identified include social responsibility and cultural reciprocity norms; limited awareness and mobility options for caregivers; financial responsibility and strain; impacts of beauty myths and shyness on caregiving attitudes and decisions; the stressful and emotional nature of caregiving; treatment perspectives influenced by social groups; challenges in consulting male physicians and associated stigma; the role of religious beliefs in caregiving; and stress management, with religion often being a coping mechanism. These factors can contribute to delayed treatment decisions for patients. CONCLUSIONS: Family caregivers are crucial in facilitating timely treatment decisions for advanced breast cancer patients in the Pakistani context. To minimize treatment delays and alleviate caregiver stress, addressing sociocultural barriers in care-seeking is essential. A tailored approach, considering sociocultural and religious factors, is imperative for the management and early diagnosis of breast cancer, necessitating appropriate policymaking and implementation.

Caring burden and coping with haemodialysis: a qualitative study with family caregivers in Sri Lanka.

OBJECTIVE: The number of patients with end-stage kidney disease (ESKD) requiring renal replacement therapy in Sri Lanka is significantly rising. Most of these patients depend on haemodialysis, carrying a significant burden on their family caregivers. To develop care and support for both the patient and their family caregiver, it is crucial to understand how caregivers experience their caregiving situation. Therefore, this study aimed to explore family caregivers' experiences of burden and coping when caring for a family member receiving haemodialysis in the Sri Lankan context. DESIGN: Qualitative study with an exploratory design. SETTING: Family caregivers were recruited at a haemodialysis unit of a main government sector hospital in Sri Lanka between October and November 2021. PARTICIPANTS: A purposive sampling of 11 family caregivers who cared for a family member receiving haemodialysis in a main government teaching hospital in Sri Lanka for at least 3 consecutive months. Data were collected through individual semistructured telephone interviews and analysed using qualitative content analysis. RESULTS: The results showed an overarching theme, 'striving to hold on and not let go', with four categories: (1) feeling exhausted by the care burden, (2) feeling burdened as failing the care responsibility, (3) striving to cope and find meaning in caregiving, and (4) coping with caregiving through others' support. CONCLUSION: The results show that the family caregivers have a multifaceted burden. They continued caring for their family member receiving haemodialysis while making adjustments to the burdensome caregiving situation despite many constraints and suffering. Psychosocial support and financial assistance, including family counselling, are needed by family caregivers, through a community support system, to ensure endurance during their family members' illness trajectory. Advance care planning is vital to alleviate care uncertainty and to meet the care needs of patients with ESKD, particularly in resource-constrained settings.

The effect of internet-administered support (carer eSupport) on preparedness for caregiving in informal caregivers of patients with head and neck cancer compared with support as usual: a study protocol for a randomized controlled trial.

BACKGROUND: Informal caregivers (ICs) of patients with cancer provide essential and mainly uncompensated care. A self-perceived preparedness to care for the patient is associated with a lower caregiver burden, described as the extent to which caregiving is perceived as having adverse effects on IC functioning and well-being. ICs' well-being is associated with patient-perceived quality of care, suggesting that interventions to optimize ICs' health are essential in order to improve patient care. Head and neck cancer (HNC) is the seventh most common malignant disease in the world. The disease and its treatment have a significant negative impact on the patient's health and quality of life. Symptoms usually interfere with swallowing, food and fluid intake, breathing, speaking, and communication. ICs frequently manage patients' symptoms and side effects, especially problems related to nutrition and oral pain, without being properly prepared. Carer eSupport is an Internet-administered intervention, based on focus group discussions with ICs, developed in collaboration with ICs and healthcare professionals, tested for feasibility, and deemed feasible. This study protocol outlines the methods of investigating the effects of Carer eSupport plus support as usual (SAU) on self-reported preparedness for caregiving, caregiver burden, and well-being in the ICs of patients with HNC, compared with ICs receiving SAU only. METHODS AND ANALYSIS: In this randomized controlled trial, 110 ICs of patients with HNC, undergoing radiotherapy combined with surgery and/or medical oncological treatment, will be randomized (1:1) to Carer eSupport plus SAU or SAU only. Data will be collected at baseline (before randomization), post-intervention (after 18 weeks), and 3 months after post-intervention. The primary outcome is self-reported preparedness for caregiving. Secondary outcomes are self-reported caregiver burden, anxiety, depression, and health-related quality of life. The effect of Carer eSupport plus SAU on preparedness for caregiving and secondary outcomes, compared with SAU only, will be evaluated by intention to treat analyses using linear regression models, mixed-model regression, or analysis of covariance. DISCUSSION: If proven effective, Carer eSupport has the potential to significantly improve ICs' preparedness for caregiving and their wellbeing, thereby improving patient-perceived quality of care and patient wellbeing. TRIAL REGISTRATION: ClinicalTrials.gov; NCT06307418, registered 12.03.2024 (https://clinicaltrials.gov/search? term=NCT06307418).

The moderating effect of care time on care-related characteristics and caregiver burden: differences between formal and informal caregivers of dependent older adults.

Objective: This study examined differences in care burden between formal and informal caregivers of dependent older adults according to care-related characteristics, and whether care time had a moderating effect on the relationship between care-related characteristics and caregiver burden. Methods: Participants were formal (n = 520) and informal caregivers (n = 142) of dependent older adults in South Korea. Caregiver burden was measured using the Korean version of the Zarit Burden Interview. Data were analyzed using hierarchical regression with interaction terms and moderation analysis. Results: Caregiver burden was higher for informal caregivers than formal caregivers. Factors associated with an increased risk of caregiver burden in both formal and informal caregiver of dependent older adults were caregivers' stress, physical strain, and care time. Care time significantly moderated the relationship between care attitude and care burden only among formal caregivers. When formal caregivers' care time was 1 standard deviation higher than the mean value, care attitude was significantly associated with care burden (bsimple = -0.903, SE = 0.106, p < 0.001). Conclusion: The caregiver burden of dependent older adults can be reduced by providing interventions to attenuate the effects of modifiable risk factors that were identified in this study. And to weaken the relationship between care attitude and burden of formal caregivers who have long care hours, a positive social atmosphere for care should be provided in addition to education. To realize sustainable care, policy considerations that reflect the results of this study will help solve the problem of formal and informal caregiver burden of dependent older adults.

Changes in Caregiver Outcomes After Participation in the Engaged Eaters Program: A Caregiver-Mediated Feeding Intervention for Autistic Children and Their Families.

IMPORTANCE: Caregivers are essential partners in caregiver-mediated interventions that build on family routines and practices. Research identifying how participation as an intervention partner influences caregivers' outcomes, including stress and self-efficacy, is scarce. OBJECTIVE: To evaluate caregiver outcomes (stress, self-efficacy, and positive feeding responses and confidence) after participation in the Engaged Eaters Program. DESIGN: Quasi-experimental pretest-posttest design. SETTING: In-home via telehealth. PARTICIPANTS: Fourteen primary caregivers of an autistic child (ages 2-7 yr) with feeding challenges. INTERVENTION: The Engaged Eaters Program-Telehealth, a caregiver-mediated 6-mo in-home telehealth feeding intervention for autistic children ages 2 to 7 yr that included 24 intervention visits, eight caregiver training modules, and consultation with a dietician. OUTCOMES AND MEASURES: Relationships between child feeding challenge severity and caregiver outcomes and individual differences in caregivers' intervention responses were evaluated. We assessed caregivers' stress (Parenting Stress Index, Fourth Edition Short Form), self-efficacy (Parent Sense of Competence Scale), Positive Feeding Responses and Confidence (PFRC; composite score of items from other assessments), and individual intervention response using pre- to postintervention change in scores. RESULTS: Exploration of individual differences revealed that only caregivers with intake PFRC scores below the mean made significant improvements by the end of the intervention. No significant group-level changes were identified for stress, self-efficacy, or PFRC. Feeding challenge severity was not significantly related to caregiver outcomes. CONCLUSIONS AND RELEVANCE: The results emphasize the importance of considering baseline practices, efficacy, and caregiver confidence when engaging caregivers in intervention. Future research should explore the nuanced relationship between caregiver outcomes and child characteristics. Plain-Language Summary: Caregivers are essential partners with feeding interventions that build on family routines and practices. When working with caregivers, occupational therapists should consider caregivers' readiness for and responses to an intervention because intervention practices may differentially affect caregivers' parenting practices, confidence, and self-efficacy. Caregivers' responses may also affect the overall effectiveness of a caregiver-mediated intervention. Positionality Statement: The term caregiver-mediated in used throughout this article in place of parent-mediated to be inclusive of all types of caregivers.

Effects of dependent care theory-based post-surgical home care intervention on self-care, symptoms, and caregiver burden in patients with primary brain tumor and their caregivers: a randomized controlled trial.

PURPOSE: This study aimed to examine the effect of dependent care theory-based post-surgical home care intervention on self-care, symptoms, and caregiver burden in primary brain tumor patients and their caregivers. METHODS: A parallel-group randomized controlled trial was conducted with patients who underwent surgery for a primary brain tumor between March 2019 and January 2020 in a tertiary hospital and with caregivers who cared for them at home. Eligible patients and caregivers were determined by block randomization. Outcome measures included validated measures of self-care agency (Self-Care Agency Scale), symptoms and interference by symptoms (MD Anderson Symptom Inventory Brain Tumor-Turkish Form), and caregiver burden (Caregiver Burden Scale). Two-way analysis of variance was used in repeated measurements from general linear models compared to scale scores. RESULTS: Self-care agency was significantly higher in the intervention group than in the control group in the first and sixth months after surgery (p < 0.05). The severity of the patients' emotional, focal neurologic, and cognitive symptoms and interference by symptoms were significantly lower in the intervention group than in the control group (p < 0.05). Caregiver burden was significantly lower in the intervention group in the first, third, and sixth months after surgery (p < 0.05). CONCLUSION: Dependent care theory-based post-surgical home care intervention increased patients' self-care and reduced symptoms and their effects. It also reduced the caregiver burden. Dependent care theory can guide the nursing practices of nurses who provide institutional and/or home care services to patients with chronic diseases and their caregivers. TRIAL REGISTRATION: NCT05328739 on April 14, 2022 (retrospectively registered).

Incidence and health care burden of uterine fibroids among female service members in the active component of the U.S. Armed Forces, 2011-2022.

Uterine fibroids are the most common benign tumors of the uterus among women of reproductive age, disproportionally affecting non-Hispanic Black women compared to other races and ethnicities. This report is an update of a 2011 MSMR report that examined uterine fibroids among female active component service members in the U.S. Armed Forces from 2001 to 2010. Incident uterine fibroids were identified for this report from inpatient and outpatient medical encounter data from 2011 to 2022. Health care burden was estimated utilizing uterine fibroid-related inpatient and outpatient diagnostic and procedure codes. Crude incidence rates and incidence rate ratios were calculated to compare rate differences between subpopulations. A total of 16,046 new uterine fibroid cases were identified, with an incidence rate of 63.5 cases per 10,000 person-years (95% confidence interval: 62.5-64.5). The highest incidence rates were observed among service women 40 years and older, non-Hispanic Black women, and those who served in the Army. Health care burden analysis showed that, even with increases in medical encounters and individuals affected, the numbers of hospital bed days declined over time. The decline in uterine fibroid-related hospital bed days could be attributed to early diagnoses and minimally-invasive treatments. Continued promotion of uterine fibroid awareness can potentially help further reduce uterine fibroid-related impacts on military readiness.

The effect of caregivers' care burden and psychological resilience on the psychosocial adjustment of patients with open heart surgery in Turkey.

This cross-sectional study investigated the effect of caregivers' care (n = 100) burden and psychological resilience on the psychosocial adjustment of patients (n = 100) with open heart surgery. Patients had poor psychosocial adjustment. Caregivers who felt incompetent in providing care had a higher care burden and a lower psychological resilience than those who did not. In addition, patients whose caregivers had higher resilience and lower burden of care had better psychosocial adjustment. The results of this study compellingly demonstrate the importance and necessity of supportive and preventive clinical social work interventions to enhance patients' adaptation to a new lifestyle and compliance with treatment during the cardiac rehabilitation process, and reduce the burden on caregivers.

The Relationships between Caregiver Burden, Physical Frailty, Race, Behavioral and Psychological Symptoms (BPSD), and Other Associated Variables: An Exploratory Study.

Background and Objectives: For persons with dementia, the relationships between caregiver burden, physical frailty, race, behavioral and psychological symptoms (BPSD), and other associated variables are poorly understood. Only one prior study examined the relationships among these variables but did not include race, which is an important social determinant of health outcomes in the United States. To examine these interactions, we conducted a cross-sectional exploratory study based on a model by Sugimoto and colleagues. Materials and Methods: The sample comprised 85 patient-caregiver dyads (58% White) seen in four centers in diverse regions of New York State. All patients met DSM5 criteria for a major neurocognitive disorder, had a Clinical Dementia Rating sum score of ≥3, and Mini-Mental State Examination (MMSE) score of 10 to 26. Other measures included the SHARE-Frailty Instrument(FI), the Neuropsychiatric Inventory (NPI) to assess BPSD, Zarit's Caregiver Burden Interview (CBI), Lawton's Activities of Daily Living (ADL) Scale, the MMSE, the Cumulative Illness Rating Scale for Geriatrics (CIRSG), age, and gender. Results: In our sample, 59% met the criteria for prefrail/subsyndromal or frail/syndromal (SSF) on the SHARE-FI. SSF had significant direct effects on the NPI and significant indirect effects on the CBI mediated through the NPI; the NPI had significant direct effects on the CBI. Race (White) had significant direct effects on the CBI (higher) and SSF (lower) but did not have significant indirect effects on the CBI. MMSE, ADL, and CIRSG were not significantly associated with the NPI or the CBI. Conclusions: Our analysis demonstrated that frailty, race, BPSD, and caregiver burden may directly or indirectly influence one another, and therefore should be considered essential elements of dementia assessment, care, and research. These results must be viewed as provisional and should be replicated longitudinally with larger samples.

The impact of caregiver burden on quality of life in family caregivers of patients with advanced cancer: a moderated mediation analysis of the role of psychological distress and family resilience.

BACKGROUND: The caregiver burden frequently experienced by family members tending to advanced cancer patients significantly impacts their psychological well-being and quality of life (QoL). Although family resilience might function as a mitigating factor in this relationship, its specific role remains to be elucidated. This study aims to probe the mediating effect of psychological distress on the relationship between caregiver burden and QoL, as well as the moderating effect of family resilience. METHODS: A cross-sectional study was conducted between June 2020 and March 2021 in five tertiary hospitals in China. Data were collected on caregiver burden, family resilience, psychological distress (including anxiety and depression), and QoL. Moderated mediation analysis was performed. RESULTS: Data analysis included 290 caregivers. It confirmed the mediating role of psychological distress in the caregiver burden-QoL relationship (P < 0.001). Both overall family resilience and the specific dimension of family communication and problem-solving (FCPS) demonstrated significant moderating effects on the "psychological distress/anxiety-QoL" paths (P < 0.05). The utilization of social and economic resources (USER) significantly moderated the association between depression and QoL (P < 0.05). CONCLUSIONS: The study corroborates psychological distress's mediation between caregiver burden and QoL and family resilience's moderation between psychological distress and QoL. It underscores the need for minimizing psychological distress and bolstering family resilience among caregivers of advanced cancer patients. Accordingly, interventions should be tailored, inclusive of psychological assistance and promotion of family resilience, particularly focusing on FCPS and USER, to augment the caregivers' well-being and QoL.

Families tackling adolescent anorexia nervosa: family wellbeing in family-based treatment or other interventions. A scoping review.

PURPOSE: Family-based treatment (FBT) has contributed significantly to the treatment of anorexia nervosa (AN) in young people (YP). However, parents are concerned that FBT and the active role of parents in the task of refeeding may have a negative impact on family relations. The aim of the review is to assess whether families engaged in FBT for AN are more or less impacted in their family wellbeing and caregiver burden, compared to families with a YP diagnosed with AN, who are not undergoing treatment with FBT. METHOD: Computerized searches across six databases complemented by a manual search resulted in 30 papers being included in the scoping review. RESULTS: The review identified 19 longitudinal studies on change in family wellbeing in families in FBT-like treatments, and 11 longitudinal studies on change in family wellbeing in treatment where parents are not in charge of refeeding. Only three randomized controlled studies directly compare FBT to treatment without parent-led refeeding. CONCLUSION: The available research suggests no difference between intervention types regarding impact on family wellbeing. Approximately half of the studies find improvements in family wellbeing in both treatment with and without parent-led refeeding, while the same proportion find neither improvement nor deterioration. As parents play a pivotal role in FBT, there is a need for good quality studies to elucidate the impact of FBT on family wellbeing. Level of evidence Level V: Opinions of authorities, based on descriptive studies, narrative reviews, clinical experience, or reports of expert committees.

Clinical Characteristics, Developmental Trajectory, and Caregiver Burden of Patients With Creatine Transporter Deficiency (SLC6A8).

BACKGROUND AND OBJECTIVES: Creatine transporter deficiency (CTD) is a rare X-linked genetic disorder characterized by intellectual disability (ID). We evaluated the clinical characteristics and trajectory of patients with CTD and the impact of the disease on caregivers to identify relevant endpoints for future therapeutic trials. METHODS: As part of a French National Research Program, patients with CTD were included based on (1) a pathogenic SLC6A8 variant and (2) ID and/or autism spectrum disorder. Families and patients were referred by the physician who ordered the genetic analysis through Reference Centers of ID from rare causes and inherited metabolic diseases. After we informed the patients and their parents/guardians about the study, all of them gave written consent and were included. A control group of age-matched and sex-matched patients with Fragile X syndrome was also included. Physical examination, neuropsychological assessments, and caregiver impact were assessed. All data were analyzed using R software. RESULTS: Thirty-one patients (27 male, 4 female) were included (25/31 aged 18 years or younger). Most of the patients (71%) had symptoms at <24 months of age. The mean age at diagnosis was 6.5 years. Epilepsy occurred in 45% (mean age at onset: 8 years). Early-onset behavioral disorder occurred in 82%. Developmental trajectory was consistently delayed (fine and gross motor skills, language, and communication/sociability). Half of the patients with CTD had axial hypotonia during the first year of life. All patients were able to walk without help, but 7/31 had ataxia and only 14/31 could walk tandem gait. Most of them had abnormal fine motor skills (27/31), and most of them had language impairment (30/31), but 12/23 male patients (52.2%) completed the Peabody Picture Vocabulary Test. Approximately half (14/31) had slender build. Most of them needed nursing care (20/31), generally 1-4 h/d. Adaptive assessment (Vineland) confirmed that male patients with CTD had moderate-to-severe ID. Most caregivers (79%) were at risk of burnout, as shown by Caregiver Burden Inventory (CBI) > 36 (significantly higher than for patients with Fragile X syndrome) with a high burden of time dependence. DISCUSSION: In addition to clinical endpoints, such as the assessment of epilepsy and the developmental trajectory of the patient, the Vineland scale, PPVT5, and CBI are of particular interest as outcome measures for future trials. TRIAL REGISTRATION INFORMATION: ANSM Registration Number 2010-A00327-32.

The mediating effect of family resilience between coping styles and caregiver burden in maintenance hemodialysis patients: a cross-sectional study.

BACKGROUND: Primary caregivers of hemodialysis patients suffer from varying degrees of stress from their patients. Caring for hemodialysis patients can expose caregivers to many problems, leading to an increased burden of care and even impacting the quality of care. The purpose of our study was to examine whether family resilience could be a mediating variable moderating the relationship between patient coping styles and caregiver burden. METHODS: The study was a cross-sectional and descriptive-analytical study that interviewed 173 pairs of hemodialysis patients and their caregivers at a blood purification center in a public hospital in China. The Brief Coping Styles Scale (Chinese version) was used to assess individuals' coping styles for disease and treatment. From the caregiver's perspective, the Family Resilience Assessment Scale (Chinese version) was used to understand the resilience of families, and the Zarit Caregiver Burden Scale was used to capture the caregiver's subjective experience of burden. Statistical analyses were conducted using SPSS version 23 and Amos version 26 to analyze the relationships between variables to examine for correlation and construct mediated effects models. RESULTS: Coping styles showed a significant positive correlation with family resilience (r = 0.347, P < 0.01) and a negative correlation with caregiver burden (r = -0.379, P < 0.01). A significant negative correlation was found between family resilience and caregiver burden (r = -0.503, P < 0.01). In the mediation model, patient coping styles directly impacted caregiver burden significantly (95% CI [-0.372, -0.058]), and coping styles indirectly impacted caregiver burden by family resilience in a significant way (95% CI [-0.275, -0.098]). CONCLUSIONS: Patient coping styles directly affect caregiver burden. Family resilience is a mediating variable between patients' coping styles and the burden on caregivers.

Factors associated with caregiver burden of toileting assistance at home versus in a nursing home: A cross-sectional study.

This study aimed to identify differences in caregiver burden related to toileting assistance, and examine the factors associated with the most burdensome aspects of providing toileting assistance. In 2019, a self-administered postal survey was conducted with 743 caregivers of older adults who received subsidies for continence products in Komatsu City, Japan. Both family caregivers and nursing home staff answered questions regarding older adults' urinary/fecal symptoms, toileting assistance, and perceived caregiver burden. Older adults living at home had less need for toileting assistance than those in nursing homes. However, family caregivers experienced more burden than nursing home staff. The most frequent physical burden associated with toileting assistance for family caregivers was urinary/fecal leakage from absorbent incontinence products. This burden was linked to family caregivers providing care at home, using a combination of urinary pads and diapers, and symptoms that caused burdens on caregivers including urinary/fecal incontinence, nocturia, and no desire to urinate. These results suggest that leakage caused by the inappropriate use of urinary pads combined with diapers is a source of caregiver burden. Continence care experts should provide guidance to family caregivers of older adults, particularly those who are underweight and frail, regarding the selection and fitting of absorbent incontinence products.

The Health Care Burden of Hepatic Encephalopathy.

Hepatic encephalopathy-a common and debilitating complication of cirrhosis-results in major health care burden on both patients and caregivers through direct and indirect costs. In addition to risk of falls, inability to work and drive, patients with hepatic encephalopathy often require hospital admission (and often readmission), and many require subacute care following hospitalization. The costs and psychological impact of liver transplantation often ensue. As the prevalence of chronic liver disease increases throughout the United States, the health care burden of hepatic encephalopathy will continue to grow.

Caregiver burden and impact on COVID-19 patient participation and quality of life one year after ICU discharge - A prospective cohort study.

OBJECTIVES: to investigate changes in caregiver strain, mental health complaints and QoL in caregivers of COVID-19 ICU survivors in the first year after discharge, and their associations with patients' participation and quality of life. METHODS: Post-ICU COVID-19 survivors, needing inpatient rehabilitation and their informal caregivers were included. Caregiver self-administered questionnaires included quality of life, self-rated health, caregiver strain, anxiety and depression symptoms, post-traumatic stress and coping style. Patients' participation in society was assessed and quality of life. RESULTS: 67 patients (78% male) and 57 caregivers (23.6% male) were included. Three months post-ICU, caregivers experienced caregiver strain (32%), anxiety (41%), depressive symptoms (16%) and PTSD (24%). One year post-ICU, rates decreased, still being 11%, 26%, 10% and 5%, respectively. Caregiver anxiety symptoms and self-rated health at three months were associated with worse patient levels of participation and quality of life one year after ICU discharge (p < 0.05). CONCLUSIONS: COVID-19 caregivers experience high levels of mental health complaints one year after a patient's ICU discharge. Furthermore, our results indicate that patient participation levels and quality of life one year after ICU discharge may be negatively associated by caregiver complaints. PRACTICAL IMPLICATIONS: Counselling and routine assessment of emotional complaints and unmet needs of the informal caregiver should be incorporated and addressed in the rehabilitation treatment of (COVID-19) post-ICU patients.

Supportive care needs and associated factors among caregivers of patients with colorectal cancer: a cross-sectional study.

To assess the level of supportive care needs of caregivers of colorectal cancer patients and explore the related key influencing factors. Totaling 283 caregivers of patients with colorectal cancer were investigated in this study. Firstly, caregivers were invited to complete a set of questionnaires, including the general information questionnaire, the Supportive Care Needs Survey-Partners and the Caregivers of cancer patients, the Caregiver Preparedness Scale, the Benefit Finding Scale, and the Comprehensive Score for Financial Toxicity. Univariate and multivariate linear regression were performed to investigate the associated factors of supportive care needs. The caregivers of patients with colorectal cancer have a moderate level of needs, scored at 2.71 ± 0.42. Caregiver preparedness, benefit finding, and financial toxicity were significantly negatively associated with the supportive care needs of caregivers (r = - 0.555, P < 0.001; r = - 0.534, P < 0.001; and r = - 0.615, P < 0.001, respectively). Our multivariate regression analysis identified some factors that directly affected the supportive care needs of caregivers, including the duration of illness, tumor stage, the age and educational level of caregivers, caregiver preparedness, benefit finding, and financial toxicity (R2 = 0.574, F = 23.337, P < 0.001). Supportive care needs are common among caregivers of colorectal cancer patients. Higher caregiver preparedness, benefit finding, and financial toxicity tend to ease these needs. Healthcare workers should have an in-depth understanding of the needs of caregivers of colorectal cancer patients and actively provide targeted financial/informational/technical/emotional support to promote nursing skills and reduce caregivers' burdens.

Correlations between ADL in patients with SCI and caregiver burden, quality of life, and presenteeism in South Korea.

The correlations between activities of daily living (ADL) among patients with spinal cord injury (SCI) and their caregivers' burden, quality of life (QoL), and presenteeism was investigated. Participants included outpatients and inpatients with SCI at a rehabilitation center and their caregivers, recruited between March 2020 and April 2021. Eighty-seven valid responses were analysed using independent t-tests and Pearson's correlations. There was a difference in caregiver burden according to patients' ADL performance. QoL was negatively correlated with caregiver burden and presenteeism. Caregiver burden and presenteeism were positively correlated. Social support can improve caregivers' QoL and reduce caregiver burden and presenteeism-induced work impairment.

Communication Patterns and Characteristics of Family Caregivers and Persons Living With Dementia: Secondary Analysis of Video Observation.

BACKGROUND: It is essential to characterize communication patterns for better health outcomes for family caregivers and persons living with dementia. OBJECTIVE: This study aimed to examine the relationships between communication patterns and the characteristics of dyads of family caregivers and persons living with dementia. METHODS: A secondary analysis was conducted using 75 video-recorded home care observations from 19 dyads. Participant characteristics and caregiver burden, depression, and sense of competence were collected from the parent study. The video-recorded dyadic communication patterns were assessed using a coding scheme developed based on Communication Accommodation Theory and Classical Test Theory. The relative frequency of the communication patterns was compared between groups. RESULTS: Overall, 8311 caregiver and 8024 care recipient communication behaviors were observed. Caregiver communication patterns were categorized as facilitative, disabling, and neutral. Care recipient communication patterns were categorized as engaging, challenging, and neutral. Caregiver gender, care recipient gender, care recipient education level, dementia diagnosis length, types of dementia, dyadic gender difference, burden, depression, and competence of caregiver, and types of communication were significantly associated with caregiver communication. Dementia diagnosis length, caregiver competence, dyadic gender difference, and types of communication were significantly associated with care recipient communication. CONCLUSIONS: The findings demonstrated different communication patterns depending on individual and dyad characteristics and evidence for dyadic communication support to promote meaningful interaction for persons living with dementia. Further analysis is needed to identify mediating factors and causal relationships.