Search Results (13)

Background: Children with medical complexity (CMC), a subset of children with special healthcare needs, have chronic conditions affecting multiple organ systems, require medical technology, and account for a significant share of pediatric healthcare spending despite comprising only 1% of the population. Their families experience unique stressors, including financial strain and high rates of workforce attrition, suggesting medical inequity is an independent risk factor for health inequity. The role of universal caregiver stress screening using a validated tool within the outpatient primary care medical home for CMC youth has not been explored in the literature. Methods: Caregivers of all patients in the Complex Care Program (CCP) within a large academic pediatric primary care Medical Home-certified practice at the Children’s National Hospital were screened for caregiver stress during routine primary care appointments using the University of Washington Caregiver Stress Scale 8-Item Short Form V. 2.0 (UW-CSS). Elevated scores prompted referrals to the CCP psychosocial team, and composite scores were recorded in the electronic medical record. Demographics, medical diagnoses, and technology support status were extracted from the medical chart. The childhood opportunity index (COI) was calculated as a proxy for socioeconomic position. Results: Screening for caregiver stress in our medical home for CMC was feasible and yielded unexpected results. We found no difference in levels of stress among caregivers based on the COI. This finding highlights the importance of universal rather than targeted screening. Future directions include measuring the impact of targeted interventions for families who initially screen positive via longitudinal follow-up. Conclusions: Screening for caregiver stress in a primary care medical home for CMC is feasible. As no single variable alone was a predictor of high caregiver stress, universal screening seems to be the most appropriate strategy to capture all families at the highest risk. Full article

(1) Background: This mixed-method study aims to identify and describe factors associated with acute and long-term parenting stressors and coping strategies in caregivers of children with intraluminal pulmonary vein stenosis (PVS). (2) Methods: Parents of children with severe PVS were recruited from a large quaternary hospital to complete a survey that included demographics, the Pediatric Inventory for Parents (PIP), and the Coping Health Inventory for Parents (CHIP). We determined the Social Vulnerability Index (SVI) based on self-reported home address. A subset of caregivers completed a 60 min semi-structured interview via Zoom exploring the impact their child’s diagnosis had on their family; experience managing stress in the hospital and at home; current resources and processes for coping; and potential recommendations for hospitals to build resilience and coping. We used multivariable linear regression to examine the association between SVI and parental stress and coping while adjusting for possible confounders. Thematic analysis identified themes related to stress and coping. Finally, we assessed instances of convergence and difference between the qualitative and quantitative results. (3) Results: Participants included 32 caregivers who were 91% female with a mean age of 39 years. The children of participants were 66% female, with a mean age of five years. The parents reported a high amount of stress with an average PIP score of 120, nearly 46 points higher than similar studies in the congenital heart community. We observed no significant associations between SVI and either parental stress or coping in adjusted models. We identified 13 themes, including medical care, hospital, family, support systems, and home medical routine or support. (4) Conclusions: Our study found high levels of illness-related parental stress among caregivers of children with PVS. Stress evolved over time from what caregivers described as ‘survival mode’ to a future-oriented outlook. Currently, caregivers rely heavily on support networks that are not available to all caregivers or may experience strain over time. Caregivers indicated that communication and parental role functioning were coping strategies that could be better supported by providers and health systems. Full article

Background: This is a retrospective longitudinal study comparing 374 patients with Parkinson’s disease (PD) who were treated in centers offering a specialized program of enhanced rehabilitation therapy in addition to expert outpatient care to 387 patients with PD, who only received expert outpatient care at movement disorders centers in Italy. Methods: The data are from subjects recruited in the Parkinson’s Outcome Project (POP) at six Italian centers that are part of a multicenter collaboration for care quality improvement (the Fresco Network). The effects were measured with a baseline and a follow-up clinical evaluation of the Timed-Up-and-Go test (TUG), Parkinson’s Disease Questionnaire (PDQ-39), and Multidimensional Caregiver Strain Index (MCSI), the number of falls and hospitalizations for any cause. We used a generalized linear mixed model with the dependent variables being the response variable, which included the covariates demographics, evaluation, and treatment variables. Results: We found that the subjects who underwent specialized enhanced rehabilitation had a better motor outcome over time than those who were managed by expert neurologists but had participated in community programs for exercise and other allied health interventions. The greatest effects were seen in patients in the early stages of the disease with a high amount of vigorous exercise per week in the last six months. Similar effects were seen for PDQ39, MCSI, the number of falls, and hospitalization. Conclusions: Long-term benefits to motor function and the quality of life in patients with PD and burden reduction in their caregivers can be achieved through a systematic program of specialized enhanced rehabilitation interventions. Full article

Introduction: In phenylketonuria (PKU) changes in dietary patterns and behaviors in sapropterin-responsive populations have not been widely reported. We aimed to assess changes in food quality, mental health and burden of care in a paediatric PKU sapropterin-responsive cohort. Methods: In an observational, longitudinal study, patient questionnaires on food frequency, neophobia, anxiety and depression, impact on family and burden of care were applied at baseline, 3 and 6-months post successful sapropterin-responsiveness testing (defined as a 30% reduction in blood phenylalanine levels). Results: 17 children (10.8 ± 4.2 years) completed 6-months follow-up. Patients body mass index (BMI) z-scores remained unchanged after sapropterin initiation. Blood phenylalanine was stable. Natural protein increased (p < 0.001) and protein substitute intake decreased (p = 0.002). There were increases in regular cow’s milk (p = 0.001), meat/fish, eggs (p = 0.005), bread (p = 0.01) and pasta (p = 0.011) intakes but special low-protein foods intake decreased. Anxiety (p = 0.016) and depression (p = 0.022) decreased in caregivers. The impact-on-family, familial-social impact (p = 0.002) and personal strain (p = 0.001) lessened. After sapropterin, caregivers spent less time on PKU tasks, the majority ate meals outside the home more regularly and fewer caregivers had to deny food choices to their children. Conclusion: There were significant positive changes in food patterns, behaviors and burden of care in children with PKU and their families after 6-months on sapropterin treatment. Full article

The experience of caregiver burden among family members of patients with advanced cancer is a common problem. The aim of this study was to determine whether the burden may be alleviated by means of a therapeutic approach based on self-chosen music. This randomised controlled trial (ClinicalTrials.gov, NCT04052074. Registered 9 August 2019) included 82 family caregivers of patients receiving home palliative care for advanced cancer. The intervention group (n = 41) listened to pre-recorded, self-chosen music for 30 min/day for seven consecutive days, while the control group (n = 41) listened to a recording of basic therapeutic education at the same frequency. The degree of burden was assessed by the Caregiver Strain Index (CSI), calculated before and after the seven-day intervention. According to this measure, caregiver burden fell significantly in the intervention group (CSI change: −0.56, SD 2.16) but increased in the control group (CSI change: +0.68, SD 1.47), with a significant group x moment interaction F(1, 80) = 9.30, p = 0.003, η²_p = 0.11. These results suggest that, in the short term at least, the use of therapy based on self-chosen music alleviates the burden on family caregivers of palliative cancer patients. Moreover, this therapy is easy to administer at home and does not present any problems in practice. Full article

The physical activity (PA) and inactivity of family caregivers of cancer patients were investigated and related to burden and quality of life through a cross-sectional multicentre study. A total of 75 caregivers were recruited from June 2020 to March 2021. The levels of PA and inactivity were estimated with a wrist accelerometer, 24 h a day, for 7 consecutive days. The Quality of Life Family Version, the Caregiver Strain Index, the total duration of care, the average number of hours spent in care, and the assistance received were registered. Our results showed that moderate-to-vigorous PA was 96.40 ± 46.93 min/day, with 90.7% of participants performing more than 150 min/week of physical activity, and this was significantly associated with age (r = −0.237). Daily inactivity was 665.78 ± 94.92 min, and inactivity for 20–30 min was significantly associated with caregiver burden (r = 0.232) and quality of life (r = −0.322). Compliance with the World Health Organization recommendations was significantly associated with a lower quality of life (r = −0.269). The strength of these associations was limited (r ~0.2). In conclusion, the PA performed by most caregivers met the established recommendations, although older caregivers (>65 years old) performed lower moderate-to-vigorous PA than younger ones. In addition, the mean inactive time was high (11 h/day), showing slight relationships with the burden and quality of life of caregivers. Full article

Taiwan is expected to reach super-aged status by 2026, leading to an increased demand for elderly caregiving services. Low local unemployment and a dwindling working-age population mean the island’s care system relies heavily on female foreign domestic workers (FDWs) from Southeast Asian neighbors such as Vietnam to satisfy labor shortages. Although suggested by anecdotal evidence, limited research has been conducted on the link between the shortfall in FDW qualifications, training, preparedness, and expertise and their employment stressors. Therefore, this study aims to assist FDWs by evaluating their stressors and helping them better understand health care delivery by (1) administering the Modified Caregiver Strain Index (MCSI) revised 2003 questionnaire, (2) performing semi-structured in-depth one-on-one interviews, (3) classifying interview results according to thematic analysis, and (4) using these themes to devise and deliver a 12-week multilingual health education teach-back program. Our results indicate that Vietnamese FDWs face specific challenges, including language barriers, homesickness, intensive physical and psychological work demands, stress adaptation, and occupational exposures. Despite yielding no significant improvements in caregiving strain, our intervention, conducted at the height of the COVID-19 pandemic, pinpoints and classifies areas of grave concern and proposes recommendations that can assist long-term care (LTC) stakeholders in understanding and overcoming their respective challenges, thereby improving the quality of elderly care. Full article

Background: The objective of this study is to determine the validity and reliability of the Caregiver Strain Index (CSI) for women during the postpartum period. Methods: This is a validation study of a measurement instrument. This study includes 212 women over the age of 19 who gave birth from March to September 2019 in Maternal and Child Hospital of Jaén (Spain). The items of the CSI were adapted for newborn care. Content validity was measured by five experts, calculating the index of agreement (Aiken’s V). Criterion validity was assessed by correlations with scores of other tools that measure constructs related to burden (Edinburgh Postpartum Depression Scale, State-Trait Anxiety Questionnaire, SOC-13 and Duke-UNC-11). Construct validity was determined by the known-groups method. Internal consistency was measured using Cronbach’s Alpha, and stability was analysed using the intraclass correlation coefficient (ICC). Results: Regarding content validity, an Aiken’s V of 1.00 (p = 0.032) was obtained. Regarding criterion validity, the correlation analyses showed statistically significant coefficients between the scores of the questionnaire and those of the sense of coherence (r = −0.447, p < 0.001), depressive symptoms (r = 0.429, p < 0.001), social support (rho = −0.379, p < 0.001) and anxiety symptoms (r = 0.532, p < 0.001). The known-groups method showed statistically significant differences in the mean of subjective burden between the groups (depressive symptoms, anxiety symptoms, sense of coherence and social support). The total scale obtained a Cronbach’s alpha value of 0.710. The ICC was 0.979. Conclusions: The adapted CSI is a valid and reliable screening tool for the subjective burden in women during the puerperium. The adapted CSI can play an important role as a guide to detect the subjective burden in women during the puerperium. Full article

This study reports carer strain and coping with medications for people with dementia with an unplanned admission to hospital, and it evaluates the impact of a safe medication intervention on carer coping and carer strain. This was a quasi-experimental pre/post-controlled trial that included a survey of carers about managing medications for people with dementia after discharge. For 88 carers who completed surveys, 33% were concerned about managing medications, and 40% reported difficulties with medication management, including resistive behaviours by people with dementia. Dose administration aids were used by 72% of carers; however, only 15% reported receiving a recent home medicines review by a community pharmacist. High carer strain was reported by 74% of carers. Carer comments described many issues that contributed to high carer stress, as well as their engagement in vigilant activities to maintain medication safety. Strategies that can contribute to carers managing medications and reducing their strain include an increased use of dose administration aids, increased provision of home medicines reviews, and increased education of health professionals to provide adequate support and education about managing medications. Full article

Introduction: This study investigated the relationship between personal and family resources (i.e., social support, family functioning, self-efficacy in care, sense of coherence and perceived burden of care) and depressive and anxiety symptoms in women during the puerperium, adjusting for stressors. Methods: This is a quantitative research design, carried out through a descriptive, cross-sectional correlation study. This study includes 212 women over the age of 19 who gave birth from March to September 2019 in Maternal and Child Hospital of Jaén (Spain). Women were selected during the immediate postpartum period. The variables analysed were postpartum depressive symptoms (Edinburgh scale), anxiety symptoms (STAI state anxiety questionnaire), perceived social support (Duke-UNC-11), family functioning (family APGAR), self-efficacy in care (Lawton), sense of coherence (SOC-13), perceived burden (Caregiver Strain Index) and stressful life events (Holmes and Rahe). The main analysis consisted of a multiple linear regression. Results: The regression model of depressive symptoms found a positive association with perceived burden (β = 0.230, p = 0.015) and negative associations with self-efficacy in care (β = −0.348, p < 0.001), social support (β = −0.161, p < 0.001) and sense of coherence (β = −0.081, p = 0.001). The regression model of anxiety symptoms obtained a positive association with perceived burden (β = 1.052, p < 0.001) and negative associations with self-efficacy in care (β = −0.329, p = 0.041), social support (β = −0.234, p = 0.001) and sense of coherence (β = −0.262, p < 0.001). Discussion: Firstly, depressive and anxiety symptoms in the puerperium period may be more prevalent than in other periods of a woman’s life. Secondly, perceived social support, self-efficacy in caring for the newborn and sense of coherence may be protective factors for depressive and anxiety symptoms in the puerperium period. Finally, perceived burden in caring for the newborn may be a risk factor for these symptoms. Full article

The purpose of this study was to analyze association between sense of coherence and perceived burden, anxiety, depression, and quality of life in caregivers of older adults. A cross-sectional study was carried out with a probabilistic sample of 132 caregivers of older relatives from the regions of Jaén, Spain. The measures assessed were sense of coherence (Life Orientation Questionnaire), subjective burden (Caregiver Strain Index of Robinson), anxiety and depression (Goldberg Scale), and quality of life (Health Questionnaire SF-12). The main analyses included bivariate analysis using Pearson’s correlation coefficient and multivariate analysis through canonical correlation analysis. Our findings show that the sense of coherence explained 50.8% of the variance shared between subjective burden, anxiety, depression, and quality of life. We highlighted manageability as the variable within the dimensions of the sense of coherence with the greatest participation in the model. The sense of coherence may be an important protective factor for the mental health of the caregiver of dependent elderly relatives. Full article

The aim of this study was to analyze the relationship between coping and anxiety in caregivers of dependent older adult relatives. A cross-sectional study was carried out in the province of Jaén (Andalusia, Spain). The convenience sample consisted of 198 family caregivers of dependent older adults. The main measurements were anxiety (Hamilton scale), coping (Brief COPE), subjective burden (Caregiver Strain Index), objective burden and sex of the caregiver. The main analyses were bivariate analysis using the Pearson correlation coefficient, and multivariate analysis using multiple linear regression. An independent regression model was developed for anxiety and each type of coping, adjusting for sex, subjective burden and objective burden. Our results demonstrate that anxiety was negatively associated with planning (partial r = −0.18), acceptance (partial r = −0.22) and humor (partial r = −0.20), and it was positively associated with self-distraction (partial r = 0.19), venting (partial r = 0.22), denial (partial r = 0.27) and self-blame (partial r = 0.25). Planning, acceptance and humor coping strategies may be protective factors of anxiety. Strategies such self-management, relief, denial and self-blame may be risk factors for anxiety. Full article

The physical load ensuing from the repositioning and moving of patients puts health care workers at risk of musculoskeletal complaints. Technical equipment developed to aid with patient handling should reduce physical strain and workload; however, the efficacy of these aids in preventing musculoskeletal disorders and complaints is still unclear. A systematic review of controlled intervention studies was conducted to examine if the risk of musculoskeletal complaints and disorders is reduced by technical patient handling equipment. MEDLINE^®/PubMed^®, EMBASE^®, Allied and Complementary Medicine Database (AMED), and Cumulative Index of Nursing and Allied Health Literature (CINAHL^®) were searched using terms for nursing, caregiving, technical aids, musculoskeletal injuries, and complaints. Randomized controlled trials and controlled before-after studies of interventions including technical patient handling equipment were included. The titles and abstracts of 9554 publications and 97 full-texts were screened by two reviewers. The qualitative synthesis included one randomized controlled trial (RCT) and ten controlled before-after studies. A meta-analysis of four studies resulted in a pooled risk ratio for musculoskeletal injury claims (post-intervention) of 0.78 (95% confidence interval 0.68–0.90). Overall, the methodological quality of the studies was poor and the results often based on administrative injury claim data, introducing potential selection bias. Interventions with technical patient handling aids appear to prevent musculoskeletal complaints, but the certainty of the evidence according to GRADE approach ranged from low to very low. Full article