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.

Evaluating the Benefits of a Family Support Program on the Health and Well-Being of Aging Family Caregivers of Adults with Intellectual and Developmental Disabilities.

Providing care to a family member with intellectual and developmental disabilities (I/DD) takes a toll on the health of the caregiver and the family, especially as they age. Research shows that peer mediated family support programs can improve caregiver health and well-being. To date, most family support programs have focused on family caregivers of children and youth with I/DD. The purpose of this study was to examine the benefits of participating in the Michigan Older Caregivers of Emerging Adults with Autism and Neurodevelopmental Disabilities (MI-OCEAN) family support program grounded in the Family Quality of Life (FQOL) framework. Specifically, we examined the effect of participation on health care utilization, caregiver well-being, and perceptions of global FQOL for older caregivers of adults with I/DD. Quantitative analysis of data gathered from 82 caregivers (age 50 and older) indicated that study participation was associated with increased use of Medicaid and improved caregiver well-being (reduced burden, stress, depression; increased health satisfaction and FQOL). Future research is needed to examine the long-term impact of the family support programs in improving the health and well-being of older caregivers of adults with I/DD.

Glucocorticoid Use and Misuse in a Rural Community of Kerala, India.

Background: Glucocorticoids (GCs) are anti-inflammatory steroid medications prescribed globally by doctors for various illnesses and they are known to produce quick symptom relief. In India, they are among the cheapest and easily accessible over-the-counter medications. Thus, it can be misused, leading to many life-threatening illnesses such as diabetes mellitus, hypertension, overwhelming infections, Cushing's syndrome, and hypo-adrenal crisis. Objective: This study reports the misuse of GCs in a rural community in the state of Kerala, India, and compares it with the only other community GC misuse study in India, from the state of Bihar. Methods: A community-based cross-sectional survey of 452 households comprising 1,734 people was conducted in rural Konni, Kerala, during June and July of 2019. In each house, people who had been taking medications over the previous 6 months were interviewed. Results: Almost 2% (n = 31) had consumed one or more GCs in the last 6 months (95% CI: 1.3-2.5%). Of these, 26% (n = 8) were taking oral GCs and 36% (n = 11) of them were inappropriately using them based on current clinical guidelines. 29% (n = 9) had used GCs for more than 1 month. Conclusions: GC misuse exists in Kerala but not to the extent seen in Bihar. In Kerala, inhaled GCs are more common than oral GCs, and the prescription is obtained predominantly from qualified medical practitioners. The prevalence of prolonged GC use could be implicated as an underlying factor for diabetes, hypertension, osteoporosis, and cataracts. It is possible that approximately 220,000 people in Kerala may have a suppressed hypothalamus-pituitary-adrenal axis which can predispose them to a fatal hypo-adrenal crisis.

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.

Evaluation of Glucocorticoids Utilization in Central Kerala using Pharmacy Sales Overview.

Background: Misuse of prescription drugs is a major public health problem in India and developing countries. Emerging evidence indicates that glucocorticoids are a class of drugs that are silently misused. These drugs are inexpensive and easily available as over-the-counter drugs in India are widely used by local practitioners and self-prescribed by patients for swift symptomatic relief of febrile illnesses, joint pain, asthma, other respiratory illnesses, and skin diseases. Many people have become dependent on glucocorticoids unintentionally and remain completely unaware of the metabolic changes occurring in their bodies. Methodology: A descriptive cross-sectional study involving 38 pharmacies in Thiruvalla municipality of South India was conducted to indirectly assess the utilization of glucocorticoids in the region using a pharmacy sales overview. Results: Most people approach pharmacies with prescriptions than without. A high majority of pharmacists do not have any knowledge about the uses (37%) or adverse effects (66%) of glucocorticoids. More than 50% of the community pharmacies have more than 1% of their sales attributed to glucocorticoids when compared with the total sales volume of drugs.

Initial evaluation of the effects of an environmental-focused problem-solving intervention for transition-age young people with developmental disabilities: Project TEAM.

AIM: Project TEAM (Teens making Environment and Activity Modifications) teaches transition-age young people with developmental disabilities, including those with co-occurring intellectual or cognitive disabilities, to identify and resolve environmental barriers to participation. We examined its effects on young people's attainment of participation goals, knowledge, problem-solving, self-determination, and self-efficacy. METHOD: We used a quasi-experimental, repeated measures design (initial, outcome, 6-week follow-up) with two groups: (1) Project TEAM (28 males, 19 females; mean age 17y 6mo); and (2) goal-setting comparison (21 males, 14 females; mean age 17y 6mo). A matched convenience sample was recruited in two US states. Attainment of participation goals and goal attainment scaling (GAS) T scores were compared at outcome. Differences between groups for all other outcomes were analyzed using linear mixed effects models. RESULTS: At outcome, Project TEAM participants demonstrated greater knowledge (estimated mean difference: 1.82; confidence interval [CI]: 0.90, 2.74) and ability to apply knowledge during participation (GAS: t[75]=4.21; CI: 5.21, 14.57) compared to goal-setting. While both groups achieved significant improvements in knowledge, problem-solving, and self-determination, increases in parent reported self-determination remained at 6-week follow-up only for Project TEAM (estimated mean difference: 4.65; CI: 1.32, 7.98). Significantly more Project TEAM participants attained their participation goals by follow-up (Project TEAM=97.6%, goal-setting=77.1%, p=0.009). INTERPRETATION: Both approaches support attainment of participation goals. Although inconclusive, Project TEAM may uniquely support young people with developmental disabilities to act in a self-determined manner and apply an environmental problem-solving approach over time. WHAT THIS PAPER ADDS: Individualized goal-setting, alone or during Project TEAM (Teens making Environment and Activity Modifications) appears to support attainment of participation goals. Project TEAM appears to support young people with developmental disabilities to apply an environmental problem-solving approach to participation barriers. Parents of young people with developmental disabilities report sustained changes in self-determination 6 weeks after Project TEAM.

Family Quality of Life Survey (FQOLS-2006): Evaluation of Internal Consistency, Construct, and Criterion Validity for Socioeconomically Disadvantaged Families.

AIMS: The purpose of this study was to test the psychometric properties of the Family Quality of Life Survey (FQOLS-2006) when used with urban families predominantly from socioeconomically disadvantaged backgrounds. METHODS: Data gathered from 193 family caregivers using the FQOLS-2006 were subjected to reliability analyses, confirmatory factor analyses, and correlational analyses to test the internal consistency of the scales (reliability), factor structure of the scales (construct validity), and convergence between the long and short versions of the tool (criterion validity). RESULTS: Internal consistency of the 54-item total FQOL scale was excellent (α = .89), while that of the six-item domain subscales ranged from moderate to strong (α = .46-.81). Although the subscale-level FQOL factor structure demonstrated good fit, some of the item-level factor loadings within each of the domains were low. Correlations between scores derived from the long and short versions ranged from moderate to strong (r = .37-.73). CONCLUSIONS: Although the internal consistency of the scales ranged from moderate to strong, the FQOLS-2006 had only a moderate degree of construct and criterion validity when used with a sample consisting predominantly of minorities from socioeconomically disadvantaged backgrounds.

Mediating Effects of Social Support on Quality of Life for Parents of Adults with Autism.

The aim of this study was to examine the mediating effect of formal and informal social support on the relationship of caregiver burden and quality of life (QOL), using a sample of 320 parents (aged 50 or older) of adult children with autism spectrum disorder (ASD). Multiple linear regression and mediation analyses indicated that caregiver burden had a negative impact on QOL and that informal social support partially mediated the relationship between caregiver burden and parents' QOL. Formal social support did not mediate the relationship between caregiver burden and QOL. The findings underscored the need to support aging parents of adult children with ASD through enhancing their informal social support networks.

Impact of Grandchild Caregiving on African American Grandparents.

The aim of this study was to describe the context and impact of caregiving for grandchildren with health concerns on grandparents. The study sample comprised 391 African American grandparents aged 55 or older. Logistic regression analysis indicated that grandparent caregivers of grandchildren with psychiatric or behavioral problems were more likely to experience a negative impact on their health (AOR = 7.86, p =.008) and leisure (AOR = 14.31, p =.024) than grandparent caregivers of grandchildren with no or other types of health problems. The findings underscore the need to support African American grandparent caregivers, particularly those raising grandchildren with mental health problems.

Concurrent Validity of the International Family Quality of Life Survey.

The measurement of the social construct of Family Quality of Life (FQOL) is a parsimonious alternative to the current approach of measuring familial outcomes using a battery of tools related to individual-level outcomes. The purpose of this study was to examine the internal consistency and concurrent validity of the International FQOL Survey (FQOLS-2006), using cross-sectional data collected from 65 family caregivers of children with developmental disabilities. It shows a moderate correlation between the total FQOL scores of the FQOLS-2006 and the Beach Center's FQOL scale. The validity of five FQOLS-2006 domains was supported by the correlations between conceptually related domains.

Understanding health care personnel's attitudes toward mandatory influenza vaccination.

BACKGROUND: This study investigated the factors influencing influenza vaccination rates among health care personnel (HCP) and explored HCP's attitudes toward a policy of mandatory vaccination. METHODS: In September 2012, a 33-item Web-based questionnaire was administered to 3,054 HCP employed at a tertiary care hospital in metropolitan Detroit. RESULTS: There was a significant increase in the rate of influenza vaccination, from 80% in the 2010-2011 influenza season (before the mandated influenza vaccine) to 93% in 2011-2012 (after the mandate) (P < .0001). Logistic regression showed that HCP with a history of previous influenza vaccination were 7 times more likely than their peers without this history to receive the vaccine in 2011-2012. A pro-mandate attitude toward influenza vaccination was a significant predictor of receiving the vaccine after adjusting for demographics, history of previous vaccination, awareness of the hospital's mandatory vaccination policy, and patient contact while providing care (P = .01). CONCLUSIONS: The increased rate of influenza vaccination among HCP was driven by both an awareness of the mandatory policy and a pro-mandate attitude toward vaccination. The findings of this study call for better education of HCP on the influenza vaccine along with enforcement of a mandatory vaccination policy.

Addressing everyday challenges: feasibility of a family caregiver training program for people with dementia.

OBJECTIVE. The purpose of this study was to examine the feasibility and efficacy of the Family Caregiver Training Program for assisting with the basic activities of daily living of people with dementia. METHOD. A one-group pretest-posttest research design with a 3-mo follow-up was used to examine the efficacy of a manualized education program for caregivers. The 6-hr training was delivered to 72 family caregivers over 3 consecutive weeks (2 hr/wk) by trained clinicians. RESULTS. Caregivers showed a significant gain in knowledge of how to effectively assist with communication and nutrition, t(52) = 7.05, p < .000; transfers and toileting, t(45) = 3.10, p < .003; and bathing and dressing, t(44) = 2.71, p < .01, of their care recipients. CONCLUSION. Our findings demonstrate that this manualized intervention protocol is a promising method of equipping family members with the skills needed to face their everyday challenges in caring for people with dementia.

Reducing cognitive load while teaching complex instruction to occupational therapy students.

Cognitive load theory is a field of research used to improve the learning of complex cognitive tasks by matching instruction to the learner's cognitive architecture. We used an experimental posttest control-group design to test the effectiveness of instruction designed to reduce cognitive load (CL) and improve instructional effectiveness in teaching complex instruction to 24 first-year master's students under authentic classroom conditions. We modified historically taught instruction using an isolated-to-interacting-elements sequencing approach intended to reduce high CL levels. We compared control and modified instructional formats using written assessment scores, subjective ratings of CL, and task completion times. Analysis of variance revealed significant differences for postinstruction, posttest CL ratings, and delayed written posttest scores (p < .05). No significant differences were identified for posttest completion times. Findings suggest that this approach can be used to improve instructional efficiency in teaching human locomotion to occupational therapy students.

The impact of different types of intimate partner violence on the mental and physical health of women in different ethnic groups.

Intimate partner violence, including threats, stalking, emotional, physical, and sexual assault by a spouse or partner, has significant influences on the well-being of women of all racial and social backgrounds. This study of a nationally representative sample of women from varying racial and ethnic groups examined specific types of violent acts on health and well-being. An association between intimate partner violence and poor physical and mental health was found. Types of partner violence also had different associations with the well-being of women of different racial and ethnic backgrounds. Social and demographic factors played an important role in moderating women's outcomes. Suggestions for future studies are discussed.