Symptoms and behavior problems of adolescents and adults with autism: effects of mother-child relationship quality, warmth, and praise

Using a cross-lagged panel design, we investigated the impact of positive family processes on change in autism symptoms and behaviors. A sample of 149 co-residing mothers and their adolescent or adult child with autism was drawn from a large, longitudinal study. Maternal warmth and praise were measured using coded speech samples in which mothers talked about their son or daughter. A high level of relationship quality was associated with subsequent reductions in internalizing and externalizing problems as well as reductions in impairments in social reciprocity and repetitive behaviors. Maternal warmth and praise were also related to symptom abatement in the repetitive behaviors domain.     

Adults with autism living at home or in non-family settings: positive and negative aspects of residential status

Background Very little is known about the context of caregiving by parents of adults with autism or about the perceived impacts of continued patterns of co-residence vs. out-of-family living. In the present study, maternal assessments of residential status, involvement with adult children living in a non-family setting, and the impacts on mothers of their residential arrangements were examined. Methods Mothers from 133 families of adults (aged 22 years and older) with autism spectrum disorder (ASD) completed questionnaires as part of a longitudinal study on family caregiving. Mothers completed open-ended questions regarding the positive and negative aspects of their child's residential arrangement. Mothers also completed scaled questions regarding their satisfaction with their child's residential arrangement, the different ways in which people's lives change after a relative moves from the home, and the frequency of contact with their son or daughter. Results Mothers found co-residing with their adult child to be of greatest positive benefit to the family while those living apart found this residential arrangement of greatest benefit to the son or daughter with ASD. The greatest negative consequences for co-residing mothers were understood to fall on families, while mothers felt the majority of negative consequences for those that lived apart. There was a high level of contact and maternal involvement between the mother and adult child with ASD even after out-of-home placement. Conclusions Residential status, as appraised by mothers, has varying impacts on the individual with ASD, on the family, and on mothers as individuals and caregivers. The present analysis suggests the multifaceted and highly contingent maternal experience associated with where her child with ASD lives. Among families whose children live elsewhere, there is an impressive amount of continued contact between these families and their son/daughter.     

The effect of the quality of sibling relationships on the life satisfaction of adults with schizophrenia

OBJECTIVE: This study examined the importance of the quality of the sibling relationship to the life satisfaction of adults with schizophrenia. METHODS: Data were drawn from a longitudinal survey of aging families of adults with schizophrenia. Ninety-three dyads of adults with schizophrenia and their siblings participated. Participants independently completed a self-administered mail questionnaire. Data on the quality of the sibling relationship were taken from the siblings' scores on the Positive Affect Index, and data on life satisfaction of the adult with schizophrenia were measured by the self and present life subscale of the Satisfaction With Life Scale. RESULTS: Adults with schizophrenia had higher levels of life satisfaction when their siblings reported having a closer and more supportive relationship with their sibling with schizophrenia. CONCLUSIONS: Our findings provide evidence of the saliency of the sibling relationship to quality of life of adults with schizophrenia in midlife.     

The role of coping in maintaining the psychological well-being of mothers of adults with intellectual disability and mental illness

BACKGROUND: Mothers who have a child with intellectual disability (ID) or mental illness face a lifetime of caregiving responsibilities and challenges. The present study investigated changes over time in how mothers cope with the challenges of caring for an adult child with disabilities and the effects of changes in coping on maternal well-being. METHODS: A sample of 246 ageing mothers of adults with ID and 74 mothers of adults with mental illness was drawn from two parallel longitudinal studies of later-life caregiving. RESULTS: There was considerable variability at the individual level in the degree to which mothers changed over time in their use of problem-focused and emotion-focused coping strategies. For both groups, an increase in their use of emotion-focused coping led to declining levels of well-being. For the parents of adults with ID, an increase in their use of problem-focused coping resulted in a reduction in distress and an improvement in the quality of the relationship with their adult child. For the parents of adults with mental illness, an increase in the use of problem-focused coping had no effect on levels of distress, but led to an improved relationship with their adult child. CONCLUSIONS: The present study underscores the importance of coping in the lives of older mothers of adults with disabilities.     

Marital satisfaction and parenting experiences of mothers and fathers of adolescents and adults with autism

The association of marital satisfaction with parenting burden and quality of the parent?child relationship was examined in 91 married mothers and fathers of co-residing adolescents and adults with autism spectrum disorders. Within-couple differences between mothers and fathers in how child characteristics related to these parenting experiences were also evaluated. Multilevel modeling was used to control for the dependency in couple data. Marital satisfaction was an important predictor of parenting experiences, particularly for fathers. Mothers reported feeling closer to their son or daughter than did fathers. Fathers' parenting experiences were more strongly impacted by child characteristics than were mothers' parenting experiences. Results emphasized the connection between the marital relationship and parenting experiences and overlapping but unique experiences of mothers and fathers.     

The health and well-being of black mothers who care for their adult children with schizophrenia

This study compared the mental and physical health of two groups of black mothers aged 55 years and older: those who were providing care for their adult child with schizophrenia or schizoaffective disorder (N=30) and those who did not have a child with mental illness (N=263). The only demographic variable that was found to differ between the two groups was that the women who were providing care for their adult child with mental illness had more children than the women in the comparison group. Both groups of women had similar mental health status. However, the mothers who were providing care for their adult children with mental illness had higher rates of chronic health conditions, such as high blood pressure, arthritis, and eye problems.     

The effect of quality of the relationship between mothers and adult children with schizophrenia, autism, or down syndrome on maternal well-being: the mediating role of optimism

This article investigates the effects of the quality of the relationship between maternal caregivers and their adult child with disabilities on maternal well-being and whether this effect is mediated by dispositional optimism. Mothers caring for an adult child with Down syndrome (n=126), schizophrenia (n=292), or autism (n=102) were surveyed. Mothers of adults with schizophrenia and autism had better psychological well-being when the mother/adult child relationship was positive, but this effect was mediated totally or partially by optimism. For all 3 groups, optimism was related to better mental and physical health. The findings highlight the importance of dispositional optimism, a psychological resource that has been virtually ignored in studies of family caregivers of adults with disabilities.     

Factors contributing to the quality of sibling relationships for adults with schizophrenia

OBJECTIVES: Research suggests that the quality of sibling relationships has a significant impact on the lives of adults with schizophrenia. A life course perspective was used to guide an investigation of the predictors of the quality of the relationship between adults with schizophrenia and their siblings. METHODS: The data come from a longitudinal study of families of adults with schizophrenia. This study is based on a survey of 136 siblings of adults with schizophrenia. Multiple regression was used to estimate the predictors of sibling relationship quality. RESULTS: Siblings reported a better relationship when they grew up in a more cohesive family environment (beta=.16, p<.05) and when they experienced more personal gains from coping with the challenges of a brother's or sister's mental illness (beta=.37, p<.001). Siblings reported a worse relationship when they perceived their brother or sister with schizophrenia as having control over his or her symptoms (beta=-.18, p<.05), expressed greater fear of their brother's or sister's behavior (beta=-.17, p<.05), and indicated that their brother or sister had struck or threatened them at some point in their lives (beta=-.18, p<.05). CONCLUSIONS: The quality of the sibling relationship is a major contributor to sibling involvement in the future and to the quality of life of adults with schizophrenia. By identifying the factors associated with positive sibling relationships, mental health providers will be better prepared to engage siblings in the treatment process and help promote stronger bonds of affection between adults with schizophrenia and their siblings.     

Evaluation of quality of life therapy for parents of children with obsessive–compulsive disorders in Iran

Previous research has provided evidence on the effectiveness of CBT in the symptomatic improvement of children with obsessive–compulsive disorders. There is also increasing recognition of the importance of involving parents and families in treatment. The aim of this study was to evaluate the short-term effectiveness of such an intervention that promoted family strengths [(quality of life therapy (QoLT)] for mothers of children with obsessive–compulsive disorders (OCD). The sample consisted of 40 children with OCD and their mothers, who had been referred to clinics in Esfahan city in Iran. Mothers were randomly allocated to an experimental (QoLT) and waiting list control group. Mothers participated in eight QoLT group sessions over 4 weeks. QoLT incorporated CBT techniques in managing OCD symptoms. Measures were completed pre- and post-intervention by both groups. Children completed the Yale–Brown obsession compulsion scale for Children, the Revised children’s manifest anxiety scale, and the brief multidimensional student’s life satisfaction scale; mothers completed the quality of life inventory (QoLI). QoLT was associated with decrease in OCD and anxiety symptoms and increase in children’s satisfaction in the global, family and environment domains, as well as with increased QoLI scores in their mothers. Parenting interventions like QoLT can complement individual modalities such as CBT in the presence of family-related difficulties. This can be particularly applicable in countries and settings with limited resources and high stigma of child mental health problems.     

Planning by older mothers for the future care of offspring with serious mental illness

OBJECTIVE: This study examined permanency planning by older mothers for their adult offspring with long-term mental illness, including extent of residential and financial planning, desire for future family care, and perceived need for and use of services to assist with planning. METHODS: Mail surveys were completed by 157 mothers (mean age, 67 years) from 41 states who lived with and provided care to adult offspring with serious mental disorders (mean age, 38 years). The offspring were mostly males (76 percent) and had diagnoses primarily of schizophrenia or schizoaffective disorder (60 percent), multiple diagnoses (20 percent), or bipolar disorder (16 percent). RESULTS: Only 11 percent of mothers reported definite plans for their offspring's future residence, and many had done little or no planning. Three-quarters of respondents hoped that another family member would assume care, yet only one-quarter thought such arrangements would definitely occur. Two-thirds of the respondents had completed financial plans. Although more than two-thirds expressed the need for services to help with planning, less than one-third had used such services. More than half reported awareness of age-related changes in themselves or their spouse as the primary reason for planning. CONCLUSIONS: Older parents of adults with long-term mental illness need professional help with planning for their offspring's future. This assistance should focus on mechanisms such as estate planning to enable case management and other services after parents' death. The involvement of nondisabled siblings in planning should also be encouraged.     

Involvement in the child welfare system among mothers with serious mental illness

OBJECTIVE: This study sought to determine the association between maternal schizophrenia and major affective disorders (serious mental illness) and child custody arrangements in a sample of Medicaid-eligible mothers. METHODS: Medicaid eligibility and claims data were merged with data from the child welfare system in Philadelphia for 1995 to 2000. The sample comprised 4,827 female residents of Philadelphia between the ages of 15 and 45 as of 1996, who were initially eligible for Medicaid through Aid to Families With Dependent Children between 1995 and 1996 and who had at least one family member younger than 18 years at the beginning of the study period. Logistic regression was used to determine association between maternal mental illness and involvement in the child welfare system. RESULTS: Among the 4,827 mothers, 7.2 percent had a serious mental illness and 4.4 percent had other psychiatric diagnoses. More than 14 percent of mothers with serious mental illness received child welfare services, compared with 10.8 percent of those with other psychiatric diagnoses, and 4.2 percent of those without a diagnosis. After the analyses adjusted for a past inpatient episode, race or ethnicity, and age, mothers with serious mental illness were almost three times as likely to have had involvement in the child welfare system or to have children who had an out-of-home placement. CONCLUSIONS: The results suggest the urgent need for increased planning and coordination between the child welfare and mental health systems, including provision of parenting support as part of mental health treatment for mothers.     

Early indicators of developmental risk: Rochester Longitudinal Study

Early indicators of schizophrenic outcomes were sought in a group of children of chronically ill schizophrenic women. A sample of pregnant women with varying degrees of mental illness were examined during the perinatal period and recruited into a 4-year longitudinal evaluation, which included cognitive, psychomotor, social, and emotional assessments at birth, 4, 12, 30, and 48 months of age. The mothers varied on mental health dimensions of diagnosis, severity of symptomatology, and chronicity of illness. Other factors included in the analyses were socioeconomic status (SES), race, sex of child, and family size. Hypotheses were tested to determine the relative impact of three sets of variables on the child's behavior: (1) specific maternal psychiatric diagnosis, (2) severity and chronicity of disturbance independent of diagnosis, and (3) general social status. We found that a specific maternal diagnosis of schizophrenia had the least impact. Neurotic-depressive mothers produced worse development in their children than schizophrenic or personality-disordered mothers. Both social status and severity/chronicity of illness showed a greater impact on development. Children of more severely or chronically ill mothers and lower-SES black children performed most poorly. These results do not support etiological models based on simple biological or environmental transmission of schizophrenia. The role of social and family environmental factors in predicting child cognitive and social-emotional competence was further evaluated using a multiple risk index. Children with high multiple environmental risk scores had much worse outcomes than children with low multiple risk scores.     

Relationships of Family Emotional Support and Negative Family Interactions with the Quality of Life among Chinese People with Mental Illness and the Mediating Effect of Internalized Stigma

This study aimed to investigate the relationships of family emotional support and negative family interactions with the quality of life among Chinese people with mental illness. Furthermore, it examined the mediating role of internalized stigma in these relationships. One hundred and twenty-five Chinese adults with mental illness were recruited from community mental health service centers in Hong Kong. The results show that both family emotional support and negative family interactions were related to the quality of life. Negative family interactions had a stronger effect on the quality of life compared to family emotional support. Internalized stigma partially mediated the relationship between negative family interactions and the quality of life. These findings suggest that, for Chinese people with mental illness, interventions aimed at promoting quality of life should consider enhancing family emotional support and reducing negative family interactions. In addition, mental health service providers could consider using family approaches to address internalized stigma in the effort of improving the quality of life for their service users.

     

Patterns and predictors of service use and unmet needs among aging families of adults with severe mental illness

OBJECTIVE: This study examined patterns and predictors of use of and unmet need for support services among aging families of adults with severe mental illness by using an expanded version of the Andersen Behavioral Model. METHOD:S: Mailed surveys were completed by 157 mothers from 41 states who lived with and provided care to adult offspring with serious mental disorders, primarily schizophrenia or schizoaffective disorders. The mean age of the mothers was 67 years (range, 50 to 88 years). RESULTS: Although unique patterns were observed among individual services, overall service use was low despite high perceived need for services. The greatest unmet needs were for social or recreational programming, training in behavior management, and information on planning for the future. Regression analyses based on the expanded Andersen model revealed that greater service use occurred when offspring spent their days away from home, mothers received higher levels of informal support, and offspring were in poorer physical health. Greater unmet needs for services were reported when mothers experienced higher burden, perceived more age-related changes in themselves, and had offspring who typically spent their days at home. CONCLUSION:S: The needs and resources of the entire family, including access to informal social support, should be considered in attempts to identify predictors of the use of and need for services among persons with chronic and severe mental illness. The findings of this study also point to the need for family education in how to locate community services as well as for better and more sensitive community services intended for the entire aging family.     

Family management of schizophrenia: A comparison of behavioral and supportive family treatment

This paper reports a comparison of behavioral and supportive family treatment for family management of schizophrenia. The family project applied two psychoeducational approaches to a highly treatment resistant population of young adults afflicted with chronic mental illness. The study compares and contrasts the effects of behavioral and supportive family management programs on clinical outcomes. Clinical improvements were associated with both family interventions. Discussion is provided on the relevance of this work to the growing body of evidence concerning the efficacy of psychoeducational family intervention for the management of schizophrenia.     

The disregarded caregivers: subjective burden in spouses of schizophrenia patients

Although the burdens of relatives of schizophrenia patients have been the subject of numerous studies, there are hardly any publications on the living situation of the patients' spouses. The findings of this qualitative interview study of 52 spouses of schizophrenia patients are, therefore, especially noteworthy. Spouses not only face illness-specific burdens but also burdens resulting from their partnership and family roles. From a biographical point of view, schizophrenia is often evaluated by the spouse as a decisive point in life that seriously affects the couple's relationship, the family, and the spouse's own life. The chronic burdens of everyday living can profoundly reduce the quality of life and the subject's satisfaction with the partnership. Though partnerships with schizophrenia patients are at risk of breakdown and separation in many respects, they are often maintained for years. Despite the illness-related burdens, many spouses take positive stock of living together. Stable partnerships seem to be achievable when the partner's impairment is perceived as moderate or moderately severe, and when the frequency at which psychotic episodes occur is assessed as still being tolerable. Spouses who suffer from mental illness or impairment themselves often experience the partnership as an appropriate and satisfactory way of life. In these cases, the mutual understanding rooted in the subject's own experiences with the illness is important.     

Transition and change in adolescents and young adults with autism: longitudinal effects on maternal well-being

We investigated how change in the characteristics of 140 adolescents and young adults with an autism spectrum disorder (ASD) would predict subsequent change in maternal well-being and in the quality of the mother-child relationship. Overall patterns of improvement in maternal well-being and mother-child relationship quality were observed during the study. When the son or daughter had declining behavior problems, were prescribed more psychotropic medications, and exited from high school during the study period, mothers' well-being and perception of relationship quality improved to a greater extent. In addition, improvements in maternal well-being and relationship quality were observed in mothers of daughters, in mothers of individuals with mental retardation as well as ASD, and in mothers of those in better health.     

Bidirectional effects of expressed emotion and behavior problems and symptoms in adolescents and adults with autism

Expressed emotion measures the emotional climate of the family and is predictive of symptom levels in a range of medical and psychiatric conditions. This study extends the investigation of the effects of expressed emotion to families of individuals with autism. A sample of 149 mothers co-residing with their adolescent or adult child with autism over an 18-month period was drawn from a large multiwave longitudinal study. High expressed emotion was related to increased levels of maladaptive behavior and more severe symptoms of autism over time. Also, characteristics of the son or daughter influenced levels of maternal expressed emotion over time. Although autism is a complex genetic disorder, the effect of the family environment in shaping the behavioral phenotype should not be underestimated.     

Health status of mothers of adults with intellectual disability

A cross‐sectional survey was conducted to describe the health of mothers of adults with intellectual disability (ID), and the influence of the mother's and her adult child's characteristics on her health. The sample consisted of 108 mothers divided into mid‐life and later‐life groups. Four service agencies mailed SF‐36 forms and demographic questionnaires to their clients. The return rate from primary caregivers was 70%. The physical and the mental components of health of both groups of mothers were found to be similar to or better than those of their counterparts in the US national norms. Arthritis was found to influence the physical health of both groups of mothers. Employment was found to influence physical health of the mid‐life mothers, while family income was found to influence mental health of the later‐life mothers. The characteristics of adults with ID did not influence the mothers' health significantly. Mothers' caregiving for their adult children with ID might not be as detrimental to the mid‐life mothers' physical component of health as it might be to the later‐life mothers. Further studies are needed.     

Families of adolescents and adults with autism spectrum disorders in Taiwan: The role of social support and coping in family adaptation and maternal well-being

In this study we examined differences in social support and coping between mothers of adolescents and adults with an autism spectrum disorder (ASD) in Taiwan and the United States and to investigate the effects of social support and coping strategies on family adaptation and maternal well-being. Participants were 76 Taiwanese mothers who had at least one son or daughter with an ASD (10 years old and older), and a comparison group of 325 mothers in the United States matched on the age range of the child with an ASD. Mothers completed self-administered, written questionnaires and participated in an interview. Taiwanese mothers reported significantly greater use of problem-focused and emotion-focused coping strategies than did mothers in the United States. For Taiwanese families, greater use of problem-focused coping strategies was associated with lower levels of depressive symptoms and anxiety. Emotion-focused coping mediated the relationships between ethnicity/culture and several outcome measures: family adaptability, family cohesion, and maternal depressive symptoms. The higher levels of emotion-focused coping in Taiwanese mothers appeared to account for their lower levels of family adaptability and cohesion and higher levels of maternal depressive symptoms. The results from this cross-cultural study helped determine the role of social support and coping strategies in family adaptation and maternal well-being in families of individuals with an ASD in each culture. Implications for service delivery are discussed.