World Health Organisation-Caregiver Skills Training (WHO-CST) Program: Feasibility of Delivery by Non-Specialist Providers in Real-world Urban Settings in India.

The World Health Organization-Caregiver Skills Training Program, a parent-mediated early intervention facilitated by non-specialist providers piloted in urban India was evaluated using mixed-methods for feasibility and effects on child and caregiver outcomes. Caregivers (n = 22) of children (2-9 years) with social-communication delays participated in a single-group pre-post study. High rates of caregiver attendance, improved caregiver fidelity, and facilitator competency suggested program feasibility. Caregivers voiced acceptability of various intervention-components. The intervention was associated with improved caregiver-reported skills and knowledge (p < 0.00), reduction in stress (p = 0.03), improved child developmental outcomes on communication and social interaction (p < 0.00), and adaptive behaviors (p < 0.00). Challenges about logistics and availability of time were highlighted. Implications of results in resource-poor settings and recommendations for future feasibility trials are discussed.

Parents planning for the long-term future of adults with ASD in India: "But that's a maybe. It's still a maybe".

Research on long-term planning for adults with Autism Spectrum Disorder (ASD) in India is non-existent. The mixed-methods study examined caregiver's expectations around the future planning of an adult with ASD and the barriers and facilitators to the future planning. The purposive sample included 139 caregivers to adults and adolescents with ASD who were part of the survey and 25 caregivers who participated in in-depth interviews. 40% of caregivers hadn't started planning for the future.The family was considered the ideal place to age, but perceived and objective barriers impacted caregivers' ability to plan for the future. The most common barrier that impacted all domains of long-term care was the fear of the unknown or the fear that none of the plans would fall in place. The study also identified resources and strategies used by parents to plan. Findings from the study can potentially impact policy, advocacy, and practice.

Social Networks, Community Integration and Recovery for Individuals with Severe Mental Illnesses in India and the U.S: A Comparative Study.

Community integration is central to recovery for individuals with severe mental illnesses (SMIs). However, cross-national research on community experiences of persons with SMIs is limited. Utilizing quantitative and social network data from a sample of individuals with SMIs, the current study (1) examined the social networks and experiences of community integration in India (n = 56) and (2) compared India and U.S. (n = 30) participants on social network characteristics, community integration, and psychosocial functioning. Results showed significant differences in demographic and psychosocial functioning between the samples. Regarding community integration, U.S. participants were more integrated into the mental health community than Indian participants. Differences in social networks revealed that Indian participants had significantly more family members and colleagues while U.S. participants had significantly more friends. Results suggest that caution be taken in generalizing mental health research cross-nationally and highlight the importance of sociocultural contexts of recovery and community integration of individuals with SMIs.

Subjective Burden and Depression in Mothers of Children with Autism Spectrum Disorder in India: Moderating Effect of Social Support.

The quantitative study assessed subjective burden, depression, and the moderating effect of social support in mothers of children with autism spectrum disorder (ASD) in India. Seventy mothers were interviewed using a structured interview schedule, which measured their subjective burden, depression, and social support from family, friends, and significant others. Data was analyzed using descriptive statistics and multiple regression analysis with interaction terms. Half of the mothers in the study reported depression of clinical significance. Higher subjective burden significantly predicted higher depression. Of the three sources of support, only medium/high family support had a direct impact on depression and also moderated the impact of the subjective burden of depression. Implications for practice and policy are discussed.

The Impact of Affiliate Stigma on the Psychological Well-Being of Mothers of Children with Specific Learning Disabilities in India: The Mediating Role of Subjective Burden.

BACKGROUND: Knowledge of the impact of affiliate stigma on the wellbeing of caregivers to children with specific learning disability (SLD) in India is limited. To fill in this gap in knowledge a cross-sectional quantitative study was undertaken to assess the impact of affiliate stigma on the psychological well-being of mothers with children with SLD in India, and test the mediating role of subjective burden, using an adapted version of Pearlin's stress and adaptation model. METHODS: Sample included 100 mothers of children with SLD. Data was collected using a structured interview schedule. Descriptive statistics, correlation and stepwise regression were used as the primary analytic tools. RESULTS: Affiliate stigma experienced by mothers significantly predicted low levels of psychological well-being and subjective burden mediated the relationship between affiliate stigma and psychological wellbeing. CONCLUSIONS: The findings call for developing targeted interventions to address affiliate stigma and positive appraisal of the caregiving situation, with the goal of improving the psychological well-being of mothers of children with SLD.

Impact of Mid-Life Symptoms of Alcoholism on the Health and Wellbeing of Aging Parents of Adults with Disabilities.

The study examined the effect of adult children's disability on parents' physical health in later life and the extent to which parents' symptoms of alcoholism in mid-life moderates the link between children's disability and later life parental health. Analyses are based on data from the Wisconsin Longitudinal Study. The analytic sample included parents of children with developmental disabilities (n = 145) or mental health problems (n = 200) and 2,432 parents of unaffected children. The results showed that the negative health consequences in later life of having a child with a developmental disability were greater for those who showed more symptoms of alcoholism in mid-life. However, symptoms of alcoholism in mid-life did not significantly moderate the impact of an adult child's mental health problems on parents' later life physical health. The findings suggest a potential area where gerontological social workers could intervene, given the negative impact of symptoms of alcoholism on the health of aging parents of children with a disability who may be significantly more susceptible to the negative health impacts of alcohol compared to their younger counterparts.

Adaptation to a spouse's disability by parents of adult children with mental illness or developmental disability.

OBJECTIVE: This study examined the effects on well-being of a spouse's disability among aging parents already serving as caregivers of adult children with severe mental illness or a developmental disability. METHODS: The study sample consisted of two groups of participants in the Wisconsin Longitudinal Study of 1957 high school graduates and their randomly selected siblings-those who had a child with a disability (N=227) and a matched comparison group of parents who did not have a child with a disability (N=1,463). The participants were surveyed in 1992-1994 and 2004-2006, and participants with a spouse with a disability in 1992-1994 were excluded from the analysis. The effect of multiple caregiving roles was investigated by using regression analysis. RESULTS: Parents of adult children with severe mental illness were more likely than either parents of adult children with developmental disabilities or the comparison group to report that their spouse developed a disability in the early retirement years. The experience of caring for a spouse with a disability and the experience of caring for an adult child with disabilities had additive effects in eroding the well-being of older adults. Parents of adult children with severe mental illness in general had the lowest levels of well-being. CONCLUSIONS: As they move into their retirement years, aging parents who care for children with long-term disabilities are likely to experience multiple caregiving responsibilities. Service providers must address the needs of these aging parents and develop interventions to help them cope and plan for their future.

Latina Mothers Caring for a Son or Daughter with Autism or Schizophrenia: Similarities, Differences and the Relationship Between Co-Residency and Maternal Well-Being.

In this cross-sectional study, we examined similarities and differences in depressive symptoms and psychological well-being between Latina maternal caregivers of persons with autism (N=29) and schizophrenia (N=33). We also explored predictors of maternal outcomes and the relationship of co-residence to them. Regression analysis found that mothers of adults with schizophrenia had lower levels of psychological well-being than mothers of youth or adults with autism. For the overall sample of mothers, co-residing with their son or daughter was significantly related to lower levels of depressive symptoms. Qualitative analysis of the nine mothers who lived apart from their son or daughter revealed that extreme behavior problems of the son or daughter and poor maternal health contributed to living apart. Despite overcoming these challenges, mothers expressed a profound sense of sadness about their son or daughters' living arrangements.

Aging fathers of adult children with schizophrenia: the toll of caregiving on their mental and physical health.

OBJECTIVE: The primary purpose of this study was to compare the physical and psychological well-being of caregiving fathers of an adult son or daughter with schizophrenia with a comparison group of fathers who do not have children with schizophrenia. METHODS: Data for the caregiving fathers (N=95) were drawn from a study of families of adults with schizophrenia; the comparison group of fathers (N=95) was drawn from the Wisconsin Longitudinal Study (WLS). Samples were matched on sociodemographic variables and analyzed with independent-samples t tests. RESULTS: Fathers of adults with schizophrenia experienced higher levels of depression, poorer perceived health, lower levels of psychological well-being, and less marital satisfaction compared with their age-matched peers in the WLS. CONCLUSIONS: This study found hidden personal costs of caregiving among fathers of adults with schizophrenia; strategies are needed for supporting these fathers.