Electronic Version of the Family Quality of Life Survey (eFQOLS): Reliability and Validity for Families of Individuals With Disabilities and Chronic Health Conditions.

This study tested the psychometric properties of an electronic Family Quality of Life Survey (eFQOLS) when used with families of individuals with disabilities and/or chronic health conditions. Data gathered from 272 family caregivers using the eFQOLS were subjected to reliability analysis, correlation analysis, and confirmatory factor analysis to test the internal consistency of the scales, as well as criterion and construct validity of the internal structure of the scale. Testing factor structures of the item-level domain models indicated that initiative and stability had low factor loadings in many domains. As a result, these items were deleted from the subscales. The subscale-level FQOL factor structure demonstrated a good fit after two adjustments. The internal consistency of the 27-item total FQOL scale was excellent (α = .93), while that of the subscales ranged from moderate to strong (α = .69 to .90). The eFQOLS had a moderate degree of construct validity, good criterion validity, and reliability when used with diverse families across the lifespan. Additional research is needed to continue refining the survey with a more heterogenous sample.

Association between Current Substance Use, Healthy Behaviors, and Depression among Ukrainian College Students.

Depression is a pervasive issue among college students worldwide, yet there is a significant gap in the literature regarding its prevalence and coping strategies in the Ukrainian context. The present study aims to fill this gap by investigating how substance use and health-promoting behaviors relate to depressive symptoms among Ukrainian college students. Health-promoting behaviors are an important strategy to prevent depression, whereas substance use can contribute to depression or make it harder to manage. Given the substantial psychosocial problems and stressors related to the ongoing war in Ukraine and the limited availability of mental health services for college students, it is important to understand how we can encourage college students to keep themselves mentally healthy. A cross-sectional study was conducted among college students on 10 campuses in 2018. Almost 16% of participants met a cut-off for depression. Female students and those who were older reported significantly higher depressive symptoms. Participants were more likely to report depressive symptoms if they were more often involved with alcohol and cannabis use, were older, and engaged in fewer health-promoting behaviors. Tobacco use was not significantly associated with depressive symptoms. Our findings suggest a moderate prevalence of depressive symptoms in our study population. We recommend implementing balanced public health interventions that address risk factors (such as substance use) while also promoting protective behaviors and can be tailored to the specific cultural and environmental context of the region.

Experiences of Parental Caregivers of Adults with Autism in Navigating the World of Employment.

PURPOSE: Caregiving often presents challenges for parents, particularly for parents of loved ones with disabilities or health challenges, who need and/or want to be employed. This study describes the employment experiences of aging parents as they continue to balance engagement in the paid workforce with the ongoing provision of care for their adult children with autism spectrum disorder (ASD). The purpose of this study was to examine the lived experiences of parents of adult children with ASD in the context of balancing career and caregiving responsibilities. METHODS: The current study uses a qualitative phenomenological research approach to describe the lived experiences of 51 parents who were caring for an adult child with ASD. The parents participated in telephone interviews to obtain information about their career experiences while providing care and support to their adult children with ASD. RESULTS: Three caregiving themes emerged including: (a) difficulty balancing caregiving with work responsibilities, (b) reasons for working, not working, or working intermittently, and (c) work as an escape or wanting to work more. CONCLUSION: As more individuals with ASD reach adulthood, often relying to varying extents on their families for daily support, parental employment will continue to be impacted as they juggle their career with caregiving responsibilities. Economically, one or more family members typically need to work to sustain the family's needs and employment support should be considered. As a society, families often need to make choices even with an adult child with ASD of who will work, how, and when.

Bullying Victimization and Suicidal Thoughts: Emotional Distress and Neighborhood Conditions.

The study aims to examine (1) the association between bullying victimization and suicidal thoughts and (2) neighborhood conditions as a moderated mediated model of the association between bullying victimization, emotional distress, and suicidal thoughts. The sample consists of 414 African American youths (ages 12-17) in Chicago's Southside neighborhoods. Variables included suicidal thoughts, bullying victimization, emotional distress, neighborhood conditions, age, sex, and government assistance. Analyses included descriptive statistics, bivariate correlations, and multivariate regression analyses. The study found that bullying victimization was not directly associated with suicidal thoughts. However, bullying victimization was positively associated with emotional distress, which was related to suicidal thoughts. Moreover, emotional distress as a mediator of the association between bullying victimization and suicidal thoughts was observed when neighborhood conditions were a moderator. The findings suggest that bullying victimization and suicidal thoughts are major concerns for African American adolescents, and prevention and intervention need to be cost-effective.

The Association of Opioid Misuse and Suicidality among People with Disabilities.

Background/Purpose: Past research has linked non-medical prescription opioid use (NMPOU) with suicide, though less focus has been placed among people with disabilities impacted by the opioid epidemic. This study examined the relationship of NMPOU and suicidality among people with and without disabilities while controlling for sociodemographic and other variables. Method: Using the 2019 National Survey on Drug Use and Health, weighted logistic regression analyses were conducted on a cross-sectional sample of 38,088 respondents 18 and older to examine the effect of opioid misuse and disability on serious thoughts of suicide, having a suicide plan, and making a suicide attempt. Results: Findings indicated opioid misuse was associated with 37% higher odds for having a suicide plan in the past year (OR = 1.37, p < .05). The main results indicated the people with disabilities had 30% higher odds for having a suicide plan (OR = 1.30, p < .05) and 73% higher odds for a suicide attempt in the past year (OR = 1.73, p < .001). Interaction analysis found that opioid misuse was associated with higher odds for having a suicide plan (OR = 1.89, p < .01), and having a suicide attempt among those with disabilities (OR = 2.57, p < .01). Conclusion: Results indicated that opioid misuse is a risk factor for suicide, and people with disabilities were at greater risk. Health workers can serve as a nexus point in effectively engaging at-risk people with disabilities in substance use and mental health prevention and recovery services.

Comparison of Perceptions of Activities of Daily Living of Adult Children with Autism Among Three Groups of Aging Caregivers.

Many aging parents care for adult children with autism spectrum disorder (ASD) and an additional loved one. This exploratory study compared differences among compound 1 (caring for an additional family member), compound 2 (caring for a typically developing minor child), and noncompound (solely caring for an adult child with ASD) caregivers on perceptions of the degree of support that care recipients need to perform specific types activities of daily living (ADL) that care recipients need assistance to complete. Each caregiver cared for at least one adult child with ASD. Results from a web-based survey completed by 320 aging caregivers were examined using Kruskal-Wallis ANOVA tests for independent samples. Compound 1 and noncompound caregivers were more likely to be involved in assisting their adult children with some ADLs when compared with compound 2 caregivers. Findings provide insight into the realities of caregivers with regard to ADL needs of their adult children.

A Comparative Case Study of Hospice and Hospital End-of-Life Care for Aging Adults With Developmental Disabilities.

Greater attention is being paid to issues surrounding end-of-life care for aging adults with developmental disabilities. The purpose of this qualitative study was to explore the end-of-life experiences of two aging adults with developmental disabilities and life-limiting serious illnesses who received care in settings in the United States. Using a comparative case study design, data from three sources (records, staff, surrogates) were collected sequentially and triangulated via within and cross-case analyses. Although the setting and design limit the generalizability of these findings, the feasibility of delivering high quality care to adults with developmental disabilities as they age and experience terminal illnesses is supported. Insights are presented regarding how nurses can address barriers by adapting policies and practices to accommodate the distinct needs that arise as people with developmental disabilities age, become seriously ill, and reach life's end.

Physical and Mental Health Comorbidities Among Adults With Multiple Sclerosis.

OBJECTIVE: To compare the incidence of and adjusted hazard ratios for common cardiometabolic diseases, musculoskeletal disorders, and psychological morbidities among adults with and without multiple sclerosis (MS). PATIENTS AND METHODS: Beneficiaries were included if they had an International Classification of Diseases, Ninth Revision, Clinical Modification diagnostic code for MS (n=9815) from a national private insurance claims database (Clinformatics Data Mart; OptumInsight). Adults without MS were also included (n=1,474,232) as a control group. Incidence estimates of common cardiometabolic diseases, musculoskeletal disorders, and psychological morbidities were compared at 5 years of continuous enrollment. Survival models were used to quantify unadjusted and adjusted hazard ratios for incident morbidities. RESULTS: Adults with MS had a higher incidence of any common cardiometabolic disease (51.6% [2663 of 5164] vs 36.4% [328,690 of 904,227]), musculoskeletal disorder (68.8% [3411 of 4959] vs 47.5% [512,422 of 1,077,737]), and psychological morbidity (49.4% [3305 of 6691] vs 30.8% [380,893 of 1,235,388]) than adults without MS, and differences were clinically meaningful (all P<.001). Fully adjusted survival models revealed that adults with MS had a greater risk for any (hazard ratio [HR], 1.37; 95% CI, 1.32 to 1.43) and all (HR, 1.19 to 1.48) common cardiometabolic diseases, any (HR, 1.59; 95% CI, 1.53 to 1.64) and all (HR, 1.22 to 2.77) musculoskeletal disorders, and any (HR, 1.57; 95% CI, 1.51 to 1.62) and all (HR, 1.20 to 2.51) but one (impulse control disorders) psychological morbidity. CONCLUSION: Adults with MS have a significantly higher risk for development of common cardiometabolic diseases, musculoskeletal disorders, and psychological morbidities (all P<.001) than adults without MS. Efforts are needed to facilitate the development of improved clinical screening algorithms and early interventions to reduce risk of chronic physical and mental disease onset/progression in this higher risk population.

Health of aging families: Comparing compound and noncompound caregivers.

Providing care to a family member with disabilities takes a toll on the health of the caregiver and the family. Among aging caregivers, compound caregiving (i.e., caring for two or more family members) has become an increasingly common scenario. However, few research studies have focused on compound caregivers. Extant literature describes individual-level outcomes, with sparse knowledge on family-level outcomes. The family quality of life framework was used in this study to examine differences in the individual and family health of aging compound and noncompound caregivers. Web-based cross-sectional data collected from 112 aging caregivers (age 50 and older) were analyzed using chi-square and independent sample t-tests to examine differences between caregivers. Compound caregivers had poorer perceptions of personal health than noncompound caregivers. In terms of family health, although all caregivers shared similar perceptions on the importance, opportunities, initiative, and stability, compound caregivers had lower attainment and satisfaction than noncompound caregivers. Multivariate regression analyses indicated that compound caregiving was associated with poorer family health. Personal health was positively associated with family health. Study findings have practice implications for identifying caregivers' multiple responsibilities. It is necessary to develop individual and family level programs focused on health promotion and caregiver training.

Dimensions of Caregiver Burden between Compound and Noncompound Caregivers of Adults with Autism.

The expanding population of adults with autism spectrum disorder (ASD) will increase the number of aging parents who often assume the role of primary caregivers. Among aging caregivers of adults with ASD, compound caregiving (caring for additional family members) has become an increasingly common scenario. However, limited research has examined the burden of compound caregivers and little is known about the specific dimensions of burden among this population. The present study aims to compare differences between compound 1, compound 2, and noncompound caregivers on specific dimensions of caregiver burden associated with adult children with ASD. Using a cross-sectional design, data were collected from 320 caregivers aged 50 and older through a web-based survey. Four dimensions of burden (time dependence, developmental, emotional, and financial) were compared using MANOVA. Compound 1 and noncompound caregivers experienced lower levels of time dependence burden than compound 2 caregivers. In terms of developmental burden, the social life of compound 2 caregivers was more affected by caregiving compared to noncompound caregivers. The findings have practice implications for identifying caregivers' multiple responsibilities and the multi-faceted impact of caregiving, and prioritizing interventions for compound caregivers and its subpopulations to reduce their time and developmental burden.

Advance Care Planning for Individuals With Intellectual and Developmental Disabilities: A State-by-State Content Analysis of Person-Centered Service Plans.

Older adults are a rapidly growing segment of the intellectual and developmental disabilities (IDD) population. Advance care planning (ACP) is recommended as a best practice for adults with IDD, yet, adoption remains low. For individuals receiving Medicaid services, regular meetings maintain the person-centered planning (PCP) process. Content analysis was used to examine data from public documents across the United States to identify the frequency of ACP in PCP and the ways it manifests. Results indicate most states had evidence of ACP within the PCP process with notable variation to the extent. Findings suggest many PCP documents lack content specific to late-life transitions. Included are examples of the ways states have integrated ACP into PCP that can serve as a guide.

Empirical evaluation of the association between daily living skills of adults with autism and parental caregiver burden.

BACKGROUND: Despite the joy of parenting, the burden of daily caregiving for children with autism spectrum disorders (ASD) can be overwhelming and constant. Parents can expect to provide enduring care for their children with ASD. Given that the majority of individuals with autism spectrum disorders (ASD) remain in their family homes well into adulthood, often the need for assistance with activities of daily living (ADLs) is placed on parents. Providing ongoing support to adult children who have difficulty with completing ADLs can increase parental caregiving demands. Therefore, the purpose of this study was to examine the relationship between the ability of adults with ASD to perform ADLs with parental perceptions of caregiver burden. METHODS: Quantitative analysis of cross-sectional multi-state data gathered electronically using Qualtrics from 320 aging parents of adults with ASD was conducted. Regression models were fit to examine the association of ADL challenges with total caregiver burden and its four domains (emotional, financial, time dependence, and developmental). RESULTS: Parental perceptions of caregiver burden decreased, particularly time dependence and developmental burden, when adult children were less dependent in ADLs, even after adjusting for parental health and behavioral challenges. CONCLUSIONS: Findings support the need for family-centered interventions to improve the capacity of adults with ASD to perform ADLs independently.

From Bully Victimization to Aggressive Behavior: Applying the Problem Behavior Theory, Theory of Stress and Coping, and General Strain Theory to Explore Potential Pathways.

Studies have documented that some bully victims fall into a subcategory of bullying called "bully victims" in which the victim becomes the aggressor. However, studies to date have not examined the pathways linking bully victimization and aggressive behavior. To address this research gap, this study applies the problem behavior theory, theory of stress and coping, and general strain theory to explore possible pathways from bully victimization to aggressive behavior by examining the mediating effects of low life satisfaction, drug use, and exposure to peer deviance. Structural equation modeling was used to examine the path model from a sample of 1,676 adolescents, aged 13 to 17 years. Data were derived from the Health Behavior in School-Aged Children (HBSC) survey. Findings revealed that bully victimization was positively associated with aggressive behavior. Moreover, bully victims displayed lower levels of life satisfaction. In addition, bully victims who were frequently exposed to peer deviance and drug use were likely to engage in bullying. These findings support the problem behavior theory and general strain theory and have implications for research, practice, and policy.

Receipt of Social Support among Compound and Noncompound Caregivers of Adults with Autism.

For parents of adult children with autism spectrum disorder (ASD), caregiving can be ongoing, beginning at diagnosis and continuing throughout adulthood. As parental caregivers age, many may be faced with additional caregiving responsibilities, such as caring for another loved one. This study examined differences in formal and informal social support used by caregivers providing care to more than one person with at least one being an adult child with ASD (compound caregivers) and those caring for a single adult child with ASD (noncompound caregivers). A nationwide sample of 320 parents (age 50 or older) of adult children with ASD completed a web-based survey to understand use of formal and informal social support. Fisher's exact probability tests were used to determine significant differences in the extent to which the services were used by the two groups of caregivers. Results indicated that 4 of the 12 formal and 2 of the 6 informal social support services differed significantly between compound and noncompound caregivers. Given that both groups of caregivers were aging, future research should focus on understanding what services are anticipated to be needed as these changes occur and as changes to future care plans are needed, to best support their care-recipients.

Psychological morbidity among adults with cerebral palsy and spina bifida.

BACKGROUND: Very little is known about the risk of developing psychological morbidities among adults living with cerebral palsy (CP) or spina bifida (SB). The objective of this study was to compare the incidence of and adjusted hazards for psychological morbidities among adults with and without CP or SB. METHODS: Privately insured beneficiaries were included if they had an International Classification of Diseases, Ninth revision, Clinical Modification diagnostic code for CP or SB (n = 15 302). Adults without CP or SB were also included (n = 1 935 480). Incidence estimates of common psychological morbidities were compared at 4-years of enrollment. Survival models were used to quantify unadjusted and adjusted hazard ratios for incident psychological morbidities. RESULTS: Adults living with CP or SB had a higher 4-year incidence of any psychological morbidity (38.8% v. 24.2%) as compared to adults without CP or SB, and differences were to a clinically meaningful extent. Fully adjusted survival models demonstrated that adults with CP or SB had a greater hazard for any psychological morbidity [hazard ratio (HR): 1.60; 95% CI 1.55-1.65], and all but one psychological disorder (alcohol-related disorders), and ranged from HR: 1.32 (1.23, 1.42) for substance disorders, to HR: 4.12 (3.24, 5.25) for impulse control disorders. CONCLUSIONS: Adults with CP or SB have a significantly higher incidence of and risk for common psychological morbidities, as compared to adults without CP or SB. Efforts are needed to facilitate the development of improved clinical screening algorithms and early interventions to reduce the risk of disease onset/progression in these higher-risk populations.

Quality of Life among Compound Caregivers and Noncompound Caregivers of Adults with Autism.

Children diagnosed with autism spectrum disorder (ASD) are reaching adulthood and require some form of lifelong care. Many parents continue caring for their adult children with ASD for as long as physically possible. As parents age, many also may provide care for another loved one, such a spouse or parent. This study compares compound (those providing care for multiple loved ones) and noncompound parental caregivers (those providing care solely for an adult child with ASD) on six dimensions of quality of life (enjoys life, life is meaningful, ability to concentrate, accepts bodily appearance, satisfied with self, and frequency of negative feelings). Specifically, this study determined the extent to which compound and noncompound caregivers' quality of life differed. The present study included 320 parents (age 50 or older) of adult children (18 or older) diagnosed with ASD who completed a web-based survey. T-tests for independent samples compared the six dimensions and overall quality of life between compound and noncompound caregivers. Results indicated that compound caregivers were less able to concentrate and had fewer negative feelings than noncompound caregivers. Further research is needed to determine the effects of caregiving on the multidimensional aspects of quality of life.

Elevated fracture risk for adults with neurodevelopmental disabilities.

BACKGROUND: Fracture is a high-burden condition that accelerates unhealthful aging and represents a considerable economic burden. Adults with neurodevelopmental disabilities (NDDs) may be susceptible for fracture at younger ages compared to adults without NDDs; and yet, very little is known about the burden of fracture for these underserved populations. The purpose of this study was to determine the sex-stratified prevalence of all-cause fracture among adults with NDDs, as compared to adults without NDDs, and if comorbidity of NDDs is associated with greater risk of fracture. METHODS: Data from 2016 were extracted from Optum Clinformatics® Data Mart (private insurance) and a random 20% sample from Medicare fee-for-service (public insurance). ICD-10-CM diagnosis codes were used to identify adults with NDDs, including intellectual disabilities, autism spectrum disorders, and cerebral palsy. Age-standardized prevalence of any fracture and fracture by anatomical location was compared between adults with and without NDDs, and then for adults with 1 NDD vs. 2 and 3 NDDs. RESULTS: Adults with intellectual disabilities (n=69,456), autism spectrum disorders (n=21,844), and cerebral palsy (n=29,255) had a higher prevalence of any fracture compared to adults without NDDs (n=8.7 million). For women, it was 8.3%, 8.1%, and 8.5% vs. 3.5%, respectively. For men, it was 6.6%, 5.9%, and 6.7% vs. 3.0%, respectively. Women with NDDs had a higher prevalence of fracture of the head/neck, thoracic, lumbar/pelvis, upper extremities, and lower extremities compared to women without NDDs. A similar pattern was observed for men, except for no difference for lumbar/pelvis for all NDDs and thoracic for autism spectrum disorders. For women and men, increasing comorbidity of NDDs was associated with a higher prevalence of any fracture: 1 NDD (women, 7.7%; men, 5.7%); 2 NDDs (women, 9.4%; men, 7.2%); all 3 NDDs (women, 11.3%; men, 13.7%). CONCLUSIONS: Study findings suggest that adults with NDDs have an elevated prevalence of fracture compared to adults without NDDs, with the fracture risk being higher with greater numbers of comorbid NDD conditions for most anatomical locations. Our study findings indicate a need for earlier screening and preventive services for musculoskeletal frailty for adults with NDDs.

A Snapshot of Social Support Networks Among Parental Caregivers of Adults with Autism.

This study provided a description of types and dimensions of informal and formal social support among aging parental caregivers of adult children diagnosed with autism spectrum disorder (ASD). Parents participated in a web-based survey regarding use of and satisfaction with social support services for parents or their adult children. Results indicated that many parents participated in autism support groups (27.5%), with psychiatric services (48.8%), counseling (40.6%), and financial assistance (39.7%) the most commonly used formal social supports. Emotional support (88.8%) and informational support (67.5%) were the most common informal social supports used. Professionals who are working with parental caregivers and their adult children diagnosed with ASD should be aware of available social support services to help them find needed services.

Impact of Caregiver Burden on Quality of Life for Parents of Adult Children With Autism Spectrum Disorder.

This study sought to examine the impact of time, developmental, emotional, and financial burdens on the quality of life (QOL) for parents (aged 50+) of an adult child with autism spectrum disorder (ASD). Participants ( N = 320) completed a web-based survey and could indicate interest in participating in one-on-one follow up interviews. Multiple linear regression analysis indicated that two variables, developmental burden and impact of caregiving on finances, were statistically significant predictors of parents' QOL. Developmental burden was the strongest predictor of parental QOL, demonstrating an inverse relationship. Qualitatively, reported findings indicated that many parents were experiencing all four burdens. Findings highlighted the need to provide services and supports to alleviate burden among aging parents of adult children with ASD.