Mothers of Children With Special Health Care Needs: Exploring Caregiver Burden, Quality of Life, and Resiliency.

INTRODUCTION: This study aimed to explore caregiver burden, quality of life (QOL), and resilience in mothers of children with special health care needs (CSHCN), compare differences between mothers of CSHCN and healthy children, and differences between mothers of CSHCN on the basis of child severity. METHOD: Mothers (n = 106) with a child aged < 18 years were recruited. A cross-sectional design was used. Measures included the Caregiver Burden Inventory, Quality of Life Scale, and Brief Resilience Inventory. Pearson point-biserial correlations and independent t-tests were used to compare group differences. RESULTS: Caregiver burden and QOL were negatively correlated (p < .001). Mothers of CSHCN had greater burden (p < .001) and poorer QOL (p = .006). Child severity increased caregiver burden time (p = .003). DISCUSSION: Study findings expound on research indicating mothers of CSHCN experience greater burden and poorer QOL than their peers, and child severity increases burden via time commitment. Health care providers should assess risk factors for poor QOL and caregiver burden and provide appropriate resources.

Association Between Caregiver Burden and Patient Recovery After Left Ventricular Assist Device Implantation: Insights From Sustaining Quality of Life of the Aged: Heart Transplant or Mechanical Support.

INTRODUCTION: After left ventricular assist device (LVAD) implantation, caregivers may experience increasing burden because of new roles and responsibilities. We examined the association between caregiver burden at baseline and patient recovery after long-term LVAD implantation in patients ineligible for heart transplantation. METHODS: Between October 1, 2015, and December 31, 2018, data from 60 patients with a long-term LVAD (age, 60-80 years) and caregivers through 1 postoperative year were analyzed. Caregiver burden was measured using the Oberst Caregiving Burden Scale, a validated instrument used for measuring caregiver burden. Patient recovery post-LVAD implantation was defined by change in Kansas City Cardiomyopathy Questionnaire-12 (KCCQ-12) overall summary score and rehospitalizations over 1 year. Multivariable regression models (least-squares for change in KCCQ-12 and Fine-Gray cumulative incidence for rehospitalizations) were used to assess for association with caregiver burden. RESULTS: Patients were 69.4 ± 5.5 years old, 85% men, and 90% White. Over the first year post-LVAD implantation, there was a 32% cumulative probability of rehospitalization; 72% (43/60) of patients had an improvement of ≥5 points in KCCQ-12 scores. Caregivers were 61.2 ± 11.5 years old, 93% women, 81% White, and 85% married. Median Oberst Caregiving Burden Scale Difficulty and Time scores at baseline were 1.13 and 2.27, respectively. Higher caregiver burden was not significantly associated with hospitalizations or change in patient health-related quality of life during the first year post-LVAD implantation. CONCLUSIONS: Higher caregiver burden at baseline was not associated with patient recovery in the first year after LVAD implantation. Understanding the associations between caregiver burden and patient outcomes after LVAD implantation is important as excessive caregiver burden is a relative contraindication for LVAD implantation.

The indirect effect of positive aspects of caregiving on the relationship between cognitive decline and dementia caregiver burden.

BACKGROUND: Research has linked increased cognitive decline in a dementia care recipient to worsening caregiver burden, but the presence of positive aspects of caregiving is associated with better outcomes. As cognitive decline worsens, a lack of positive caregiving experiences could lead to burden for the caregiver. This study investigated relationships among dementia caregiver burden, cognitive decline, and positive aspects of caregiving in dementia, predicting an indirect effect of positive aspects of caregiving. METHODS: Data from 724 patients of an outpatient memory clinic in Ohio were examined and dyads included based on clinically supported patient diagnoses on the dementia spectrum. Caregivers completed the Zarit Burden Interview (ZBI) and Positive Aspects of Caregiving (PAC) measures. The Montreal Cognitive Assessment and Mini-Mental State Examination were used to estimate cognitive decline, standardized to create a single variable. Multiple potential covariates were considered for inclusion in the model. A cross-sectional mediation analysis using the Hayes PROCESS macro explored the presence of an indirect effect of PAC on the relationship between cognitive decline and ZBI using 5000 bootstrap samples. RESULTS: Only the potential covariate caregiver age was correlated with any of the primary variables; this variable was controlled in analyses. Significant relationships emerged between cognitive decline and ZBI (r = -0.12, P < 0.001), between PAC and ZBI (r = -0.23, P < 0.001), and between cognitive decline and PAC (r = -0.07, P < 0.05). An indirect effect of positive aspects of caregiving on the relationship between cognitive decline and ZBI was statistically significant (B = 0.0092, 95% bias-corrected confidence interval: 0.0008, 0.0185), accounting for 14.4% of the variance in the model. CONCLUSIONS: A lack of positive aspects of caregiving could be partially responsible for development of dementia caregiver burden as cognitive decline worsens. Longitudinal examination of these relationships is needed to understand causality fully. Findings may help healthcare providers tailor treatment to alleviate caregiver burden.

"I need to be alert at night to provide care": Factors associated with problematic sleep among young Australian caregivers.

OBJECTIVES: There is increased recognition that young people (<25 years) may occupy a carer role for family or others with health conditions or disability. This is often in addition to study and social activities. This means competing demands on time, and insufficient sleep. Our aim was to determine the contribution of caring duties to problematic sleep in young carers. METHODS: A survey of Australian carers was conducted, including questions on demographics, characteristics of the carer and care recipient, and sleep quality and quantity. Participants were eligible if they reported sleep time <7 hr or dissatisfaction with their sleep, and were aged 15-24 years. RESULTS: A total of 110 participants (71.8%_female = 79, 15-17 years = 62, 18-24 years = 48) were included in analysis; 55.5% (n= 61) reporting dissatisfaction with their sleep and 62.7% (n= 69) reporting typically less than 7 hr sleep per night. Sleep duration was significantly shorter for those who reported 1-2 or ≥3 awakenings to provide care, compared with no awakenings (p_< .05). Sleep quality, as described by scores on the Pittsburgh Sleep Quality Index (PSQI) was also significantly worse for those who were frequently awoken by their care recipient (p < .05). Worrying about the care recipient, being woken by the care recipient, and listening out for the care recipient were the most frequently identified factors impacting on sleep. CONCLUSION: Young carers experience reduced sleep duration and poor sleep quality. Strategies to alleviate the burden of care work on young carer's sleep would benefit the health and safety of this group.

Gender Differences in Mental Health, Quality of Life, and Caregiver Burden among Informal Caregivers during the Second Wave of the COVID-19 Pandemic in Germany: A Representative, Population-Based Study.

INTRODUCTION: This study aimed to compare the mental health, quality of life, and caregiving burden between male and female informal caregivers of older adults (≥60 years) during the second wave of the COVID-19 pandemic in Germany. METHODS: The sample consisted of 301 female and 188 male informal caregivers of older adults in need of care (≥60 years). Data were used from a cross-sectional study in March 2021 that questioned a representative sample of adults aged 40 years and older from Germany. Information on informal care provision, mental health (depressive and anxiety symptoms), caregiving burden, and quality of life was assessed for the period between December 2020 and March 2021. Regression analyses, adjusted for (1) the sociodemographic background and health of the caregivers, (2) the caregiving time and caregiving tasks, and (3) the perception of impairment and danger posed by the pandemic, were conducted. RESULTS: Findings of the fully adjusted model indicated a higher level of anxiety and lower quality of life among female caregivers, compared to male caregivers. Gender differences in depression and caregiver burden were not significant in analyses that controlled for care tasks and time. Moderator analyses indicated that gender differences in caregiver's anxiety levels were influenced by the danger perceived to be posed by the pandemic: among men the danger to the care recipient, and among women the danger to themselves, increased anxiety. CONCLUSION: Female informal caregivers were more negatively affected than male informal caregivers during the pandemic, as indicated by higher levels of anxiety and lower quality of life. Gender differences in anxiety depended on the perceived danger posed by the pandemic. Thus, policy and pandemic measures should focus on gender-specific support of female caregivers who seem to be particularly vulnerable during the pandemic. More caregiver-specific support and information around protecting themselves and their care recipients are recommended. Also, further research on gender differences in care performance and their relation to psychosocial health outcomes is recommended.

Caregiving Situation as a Predictor of Subjective Caregiver Burden: Informal Caregivers of Older Adults during the COVID-19 Pandemic.

The COVID-19 pandemic has created and exacerbated emotional, financial, and technical challenges for informal caregivers of older people. The aim of this study was to explore the caregiving situation and subjective burden of informal caregivers of older family members during COVID-19, and to investigate how a caregiving situation's characteristics predict the subjective burden of care in times of COVID-19. The study was conducted in April and May 2021 via an online access panel. The sample (n = 612) was determined using a screening test that enabled us to focus on a Slovenian population of informal caregivers aged 40+ caring for a person aged 65+ for at least four hours/week on average. Our findings reveal that the subjective burden of care was high among informal caregivers during COVID-19. Multiple regression analysis showed that the provision of activities of daily living, care duration, average hours of care per week, formal care status, and recipients' health problems related to dementia or other memory problems significantly predicted the subjective burden of caregivers. These findings call for better recognition of the role of informal caregivers. The time and effort devoted to informal care should be supported by legislation and social security.

Caregiver burden and health-related quality of life among family caregivers of oesophageal cancer patients: a prospective nationwide cohort study.

BACKGROUND: Oesophageal cancer surgery is extensive with high risk of long-term health-related quality of life (HRQL) reductions. After hospital discharge, the family members often carry great responsibility for the rehabilitation of the patient, which may negatively influence their wellbeing. The purpose was to clarify whether a higher caregiver burden was associated with psychological problems and reduced HRQL for family caregivers of oesophageal cancer survivors. MATERIAL AND METHODS: This was a nationwide prospective cohort study enrolling family members of all patients who underwent surgical resection for oesophageal cancer in Sweden between 2013 and 2020. The family caregivers reported caregiver burden, symptoms of anxiety, depression, post-traumatic stress, and HRQL 1 year after the patient's surgery. Associations were analysed with multivariable logistic regression and presented as odds ratios (OR) with 95% confidence intervals (CI). Differences between groups were presented as mean score differences (MSD). RESULTS: Among 319 family caregivers, 101 (32%) reported a high to moderate caregiver burden. Younger family caregivers were more likely to experience a higher caregiver burden. High-moderate caregiver burden was associated with an increased risk of symptoms of anxiety (OR 5.53, 95%CI: 3.18-9.62), depression (OR 8.56, 95%CI: 3.80-19.29), and/or posttraumatic stress (OR 5.39, 95%CI: 3.17-9.17). A high-moderate caregiver burden was also associated with reduced HRQL, especially for social function (MSD 23.0, 95% CI: 18.5 to 27.6) and role emotional (MSD 27.8, 95%CI: 19.9 to 35.7). CONCLUSIONS: The study indicates that a high caregiver burden is associated with worse health effects for the family caregiver of oesophageal cancer survivors.

Mediator effect of caregiver burden on the association between disability and quality of life among older adults.

OBJECTIVE: To estimate the association of disability and qual-ity of life considering the potential mediating role of caregiver burden among a sample of older Mexican adults and their caregivers. MATERIALS AND METHODS: Cross-sectional study with 93 dyads (elderly/caregivers) conducted in 2018 in five localities (urban and rural) of the State of Mexico. The quality of life (QoL) was determined using the WHOQoL (WHO Quality of Life) instrument. Disability was measured by assessing the basic activities of daily living (BADL), and the caregiver burden was evaluated by the Zarit Burden Interview (ZBI). RESULTS: The results showed that BADL disability is associated with a lower QoL (total effect: -14.3; 95%CI: -20.2,-8.4) and that a significant proportion of this associa-tion can be attributable to caregiver burden (25.0%; 95%CI: 17.9,43.2). CONCLUSIONS: Our findings show the need for designing effective interventions that prevent or ameliorate the adverse effects of caregiver burden.

Association between increased caregiver burden and severe psychological distress for informal caregivers during the COVID-19 pandemic in Japan: A cross-sectional study.

OBJECTIVE: During the coronavirus disease 2019 (COVID-19) pandemic, informal caregivers' mental health deteriorated more than that of non-caregivers. We examined the association between increased caregiver burden during the pandemic and severe psychological distress (SPD). METHODS: We used cross-sectional data from a nationwide internet survey conducted between August and September 2020 in Japan. Of 25,482 participants aged 15-79 years, 1,920 informal caregivers were included. SPD was defined as Kessler 6 Scale (K6) score ≥ 13. Self-rated change in caregiver burden was measured retrospectively with a single question item. Binary logistic regression analysis was used to examine the association between SPD and increased caregiver burden during the pandemic, adjusted for demographic, socioeconomic, health, and caregiving variables. To examine the differential association between increased caregiver burden and SPD, interaction terms were added and binary logistic regression was separately conducted for all variables. RESULTS: Participants' mean age was 52.3 years (standard deviation 15.9), 48.8% of participants were male, 56.7% reported increased caregiver burden, and 19.3% exhibited SPD. Increased caregiver burden was significantly associated with SPD (adjusted odds ratio: 1.90; 95% confidence interval: 1.37-2.66). The association between increased caregiver burden and SPD was stronger among caregivers who were married, those undergoing disease treatment, and those with a care-receiver with a care need level of 1-2. CONCLUSIONS: The results revealed that more than half of caregivers reported increased caregiver burden, and increased caregiver burden was associated with SPD during the pandemic. Measures supporting mental health for caregivers with increased caregiver burden should be implemented immediately.

Caregiving Burden Among Caregivers of People With Dementia Through the Lens of Intersectionality.

BACKGROUND AND OBJECTIVES: Caregivers may be at different risks of various types of burdens by virtue of their gender and racial/ethnic status. This article explores the differences in caregiving burdens across the intersectionality of race and gender. RESEARCH DESIGN AND METHODS: Using Round 5 (conducted in 2015) and Round 7 (conducted in 2017) of National Study of Caregiving and National Health and Aging Trends Study data, the study examined differences in caregiver burdens across and within different gender and racial/ethnic groups, within the realms of financial, emotional, and physical burdens. The sample consisted of 1,206 caregivers who provided services to Medicare beneficiaries. Logistic regressions were performed to assess the 3 types of burdens each subgroup was experiencing. RESULTS: Results indicated that within the intersectionality framework, compared to White female caregivers, Black male caregivers were 3.3 times (95% confidence interval [CI] 1.77-6.22) more likely to experience financial burden, and Black female caregivers were 54% less likely to experience physical burden. Surprisingly, compared to White female caregivers, all the other groups were 37% (95% CI 0.41-0.95) to 71% (95% CI 0.15-0.56) less likely to have emotional burden. DISCUSSION AND IMPLICATIONS: The findings highlighted that Black male caregivers are experiencing financial burden and White female caregivers are experiencing emotional burden disproportionately. To develop effective interventions and programs for dementia caregivers, a special focus should be put on monitoring the differences in the types of burdens that the above-mentioned population subgroups experience.

Partner Care Arrangements and Well-Being in Mid- and Later Life: The Role of Gender Across Care Contexts.

OBJECTIVES: We assess gender moderation in the association between partner care arrangements and individuals' well-being, and the extent to which gender differences vary across European care contexts. METHODS: We use 2015 data from the Survey of Health, Ageing and Retirement in Europe for 3,465 couples aged 50+, where at least 1 partner receives care. We assess gender differences in individuals' life satisfaction and depressive symptoms across 5 partner care arrangements: solo-; shared formal; shared informal; outsourced formal; and outsourced informal care. We explore heterogeneity in the gendered associations across 4 care contexts: Northern, Western, Southern, and Eastern Europe. RESULTS: Sharing care with formal providers is associated with lower well-being among women than men, with a significant well-being "penalty" among Southern European women with partners in shared formal care. Outsourcing partner care to informal providers is associated with higher well-being than other care arrangements for men across care contexts, but with lower well-being for women in Southern Europe. DISCUSSION: Policies to support caregivers' well-being need to be sensitive to the coordination of formal and informal caregiving support for men and women in their respective care contexts.

High Exhaustion in Geriatric Healthcare Professionals During the COVID-19 Second Lockdown.

BACKGROUND: In a previous study, we assessed burnout in geriatric healthcare workers during the first lockdown that lasted from March to May 2020 in France, in response to the COVID-19 crisis. OBJECTIVE: We carried out a follow-up study to assess burnout in the same population during the second lockdown that was implemented at the end of October 2020. METHODS: We used an online survey to assess burnout in terms of exhaustion and disengagement in a sample of 58 geriatric healthcare workers. RESULTS: We found higher levels of exhaustion, disengagement, and burnout among geriatric healthcare workers during the second than during the first lockdown. We also found high levels of exhaustion but moderate disengagement and burnout during the second lockdown. CONCLUSION: The increased exhaustion, disengagement, and burnout during the second lockdown can be attributed to the increased workload in geriatric facilities throughout this crisis and during the second lockdown due to shortage in staff and increased number of shifts and allocated duties. The high levels of exhaustion reported among geriatric healthcare workers during the second lockdown can reflect their physical fatigue, as well as their feelings of being emotionally overextended and exhausted by their workload.

Family caregivers of rare disease: A survey on health-related quality of life in family caregivers for Gaucher disease patients in China.

BACKGROUND: Rare diseases affect the health-related quality of life (HRQoL) of patients and their family caregivers (FCs). However, limited evidence is available on the HRQoL of FCs of patients with Gaucher disease (GD). This study aimed to assess HRQoL and related factors among FCs of patients with GD in China. METHODS: A cross-sectional online survey was conducted with 49 FCs recruited by convenience sampling. Participants completed the Medical Outcome Study Short Form-36 (SF-36), Zung's Self-Rating Anxiety Scale, Zung's Self-Rating Depression Scale, the Multi-dimensional Scale of Perceived Social Support, the Herth Hope Index, and a questionnaire about FCs' and patients' sociodemographic characteristics. Single-sample t tests, one-way analysis of variance, and multivariate linear regression analysis were used to analyze the data analysis. RESULTS: Participating FCs had significantly lower scores in all eight SF-36 domains compared with the general population in China (p < 0.01). FCs' gender, education, daily care time, anxiety, and the perceived disease severity of patients were significant predictors of SF-36 physical component summary scores. Caregiving help from others, anxiety, perceived disease severity, and medical insurance type were significant predictors of SF-36 mental component summary scores. CONCLUSION: The findings showed FCs of patients with GD had lower HRQoL. There is an urgent need to address the health concerns of FCs of people with rare diseases including their HRQoL.

Assessment of Have Problems and Care Burdens of Mothers with Handicapped Children in COVID-19 Pandemic.

In the study, it was aimed to evaluate the problems and care burden of mothers who have a handicapped child in the pandemic process. The population of the descriptive study consisted of the mothers of the children who came to the rehabilitation center (n = 230), and the sampling consisted of the mothers who wanted to participate in the study (n = 216). The research data were collected through social media and the data were analyzed using the mean, standard deviation, percentage and frequency measurements, independent sample t test, Oneway anova, Kruskal wallis tests in the SPSS program. In the study, Burden Interview Scale (BIS) scores of the mothers who stated that the educational status of their child was adversely affected in the pandemic, stated that they were worried that there would be someone to take care of my child if I died, stated that the child's health checks were interrupted, stated that they did not send their child to school due to the fear of COVID-19, and reported that they had a problem in reaching the health institution was determined were significantly higher than. Mothers with handicapped children stated that their children experienced difficulties in important situations such as health checks and educations during the pandemic period. In addition, it was found that the care burden of these mothers was higher. During the pandemic period, it is necessary to make and support new regulations in accordance with the disability of these special children with state policies as well as healthcare professionals.

Targeted literature review of current treatments and unmet need in moderate rheumatoid arthritis in the United Kingdom.

OBJECTIVES: The burden and treatment landscape of RA is poorly understood. This research aimed to identify evidence on quality of life, caregiver burden, economic burden, treatment patterns and clinical outcomes for patients with moderate RA in the United Kingdom. METHODS: A systematic literature review was performed across multiple databases and screened against pre-defined inclusion criteria. RESULTS: A total of 2610 records were screened; seven studies presenting evidence for moderate RA were included. These patients were found to incur substantial burden, with moderate to severe levels of disability. Compared with patients in remission, moderate RA patients reported higher levels of disability and decreased EQ-5D utility scores. The majority of patients did not feel that their current therapy adequately controlled their disease or provided sufficient symptom relief. In the United Kingdom, the National Institute for Health and Care Excellence (NICE) have not approved advanced therapies (such as biological disease-modifying anti-rheumatic drugs) for patients with moderate disease, which restricts access for these patients. CONCLUSION: The evidence available on the burden of moderate RA is limited. Despite current treatments, moderate RA still has a substantial negative impact, given that a DAS28 disease activity score defined as being in the moderate range does not qualify them for access to advanced therapies in the United Kingdom. For these patients, there is a particular need for further studies that investigate their burden and the impact of treating them earlier. Such information would help guide future treatment decisions and ensure the most effective use of resources to gain the best outcomes for patients with moderate RA.

Disrupted Access to Therapies and Impact on Well-Being During the COVID-19 Pandemic for Children With Motor Impairment and Their Caregivers.

OBJECTIVES: The aim of this study was to determine the impact of the COVID-19 pandemic on access to rehabilitation therapies and the impact of changes in therapy access on the physical and mental well-being of children with motor impairment and their caregivers. DESIGN: Caregivers of children younger than 18 yrs with childhood-onset motor impairment (primarily cerebral palsy) completed an anonymous survey through the online platform REDCap between May 5 and July 13, 2020. RESULTS: The survey was completed by 102 participants. Before the pandemic, 92 of 102 children (90%) were receiving one or more therapies; at the time surveyed, 55 children (54%) were receiving any therapies (P < 0.001). More than 40% of the sample reported increased child stress, decreased physical activity, and/or decline in mobility/movement. Participants who reported a decrease in number of therapies at the time surveyed more frequently reported lower satisfaction with treatment delivery (P < 0.001), a decline in child's mobility (P = 0.001), and increased caregiver stress (P = 0.004). Five qualitative themes were identified from open-ended question responses related to therapies and well-being. CONCLUSIONS: Access to pediatric rehabilitation therapies was disrupted during COVID-19. Disrupted access may be related to impact on physical and mental health. With the expansion of telehealth, caregiver and child feedback should be incorporated to optimize benefit.

Supporting families to protect child health: Parenting quality and household needs during the COVID-19 pandemic.

BACKGROUND: Supportive parenting is critical for promoting healthy child development in the face of stressors, such as those occurring during COVID-19. Here, we address a knowledge gap regarding specific household risk factors associated with parenting quality during the pandemic and incorporate first-person accounts of family challenges and needs. METHODS: Mixed methods were applied to data collected between April 14th - 28th, 2020 from the "Parenting During the Pandemic" survey. Participants included 656 primary caregivers (e.g., mothers, fathers, foster parents) of least one child age 1.5-8 years of which 555 (84.6%) responded to at least one parenting questionnaire. Parenting quality was assessed across stressful, negative, and positive parenting dimensions. Household risk was examined across pandemic- linked (e.g., caregiver depression, unmet childcare needs) and stable factors (i.e., annual income, mental illness history). Significant correlates were examined with regressions in Mplus. Thematic analysis identified caregiver challenges and unmet needs from open-ended questions. FINDINGS: Caregiver depression, higher child parity, unmet childcare needs, and relationship distress predicted lower-quality parenting. Caregiver depression was the most significant predictor across every parenting dimension, with analyses indicating medium effect sizes, ds = .39 - .73. Qualitative findings highlighted severe strains on parent capacities including managing psychological distress, limited social supports, and too much unstructured time. INTERPRETATIONS: Lower quality parenting during COVID-19 is associated with multiple household and pandemic risk factors, with caregiver depression consistently linked to parent- child relationship disruptions. Focused efforts are needed to address caregiver mental health to protect child health as part of the pandemic response.

Burden of care in families of patients with rare genetic diseases: analysis of a large Italian cohort.

In the last decade, the number of children and youth with special health care needs (CYSHCN) is increased as a result of the improvement of neonatal and pediatric assistance. The aim of our study was to describe the burden of care of the families caring a CYSHCN in our country, evaluating their living condition in order to explore socio-economic characteristics, health problems, needs and their adaptation processes trying to reach a balance between the needs of the disabled child and those of the other family members. We administered a questionnaire to the parents of CYSHCN during a routine clinical evaluation. From the analyses of questionnaires obtained, parents were the main caregiver of the children and 43,8% of them reported that they were not getting enough support. Burden of care fell on parents and indeed compilers reported an average level of stress of 3,2 (0-5) and more important, the main reported sources of stress were the concern about the future and health of their children. From the analyses of our population emerged unsatisfied needs of these families and their necessity to be effectively supported and integrated into the social fabric of the community. Social supporting is essential to help managing family stress and is evident the needed of these parents for interventions to directly target caregiver needs through the provision of tailored services, such as respite care opportunity, peer support, financial aid and medical home technologies to improve their quality of life.

Caregiver Burden Among Those Caring for Patients With Spina Bifida.

OBJECTIVE: 1) To identify baseline characteristics of caregivers of school-aged children with spina bifida; 2) To identify independent predictors of caregiver burden in this population. MATERIALS AND METHODS: A survey was distributed via Facebook advertising to caregivers of patients with congenital genitourinary anomalies from May to September 2018. Eligible participants (n = 408) entailed English-speaking adults who are involved in the patient's care and attend ≥50% of their medical appointments. Caregiver burden was assessed using the Caregiver Burden Inventory (CBI), where higher scores indicate higher burden. CBI ≥24 indicates need for respite and CBI ≥36 indicates high risk of burnout. Bivariate analyses (t-tests and chi-square tests) were conducted using STATA software. RESULTS: Our analysis includes 408 caregivers caring for patients with spina bifida. In our study population, 59.3% of caregivers were in need of respite due to caregiver burden and 26.7% of caregivers were so burdened that they are at risk of burning out (CBI score ≥36). Bivariate analysis showed that caregiver gender and number of tasks performed by the caregiver were significantly associated with risk of burnout (CBI ≥ 36). Multivariable analysis of overall caregiver burden showed increased risk of burnout (CBI ≥ 36) among older caregivers, female caregivers, and those performing more caregiving tasks. CONCLUSION: Caregiver burden is common among caregivers of patients with spina bifida, and further research is needed to identify strategies and resources for mitigating caregiver burden.

Burden of Spinal Muscular Atrophy (SMA) on Patients and Caregivers in Canada.

BACKGROUND: Spinal muscular atrophy (SMA) is a rare neurodegenerative disease characterized by progressive muscular weakness, which occurs in one in 6,000 to 10,000 live births. The burden of SMA on Canadian patients and caregivers is not known. OBJECTIVE: To characterize the burden of SMA in Canada as reported by patients and caregivers, including disease and treatment impacts, indirect costs, and caregiver burden. METHODS: Surveys were distributed by Cure SMA Canada and Muscular Dystrophy Canada to individuals with SMA and their caregivers. The online surveys were anonymous and completed between January 28 and February 21, 2020. RESULTS: 965 patient and 962 caregiver responses met the eligibility criteria. Patients reported SMA subtypes as: type I (25.0%), type II (41.3%), type III (29.3%). Using the EQ-5D, patients were shown to have impaired quality of life with an average health utility index of 0.49 (SD: 0.26). The median expenditure was $4,500 CAD (IQR: $1,587 - $11,000) for assistive devices; $6,800 CAD (IQR: $3,900-$13,000) on health professional services; and $1,200 CAD (IQR: $600 -$3,100) on SMA-related travel and accommodation in the past 12 months. Caregivers reported needing respite care (45.7%), physiotherapy for an injury from a lift/transfer (45.7%), or other health impacts (63.3%). Caregivers reported changes to personal plans, sleep disturbances, and work adjustments, with a mean Caregiver Strain Index score of 7.5 [SD: 3.3]. CONCLUSION: SMA in Canada is associated with a significant burden for patients and their caregivers.