Over the past decade, I have been investigating the challenges faced by families of persons with severe and persistent mental illness. My research has been funded by the National Institute of Mental Health [NIMH] since the early 1990s. With this support, I have conducted three major studies of families coping with mental illness. In a survey of over 1000 Wisconsin families caring for a relative with a severe and persistent mental illness, we documented the importance of professionals involving family members as collaborators in the treatment process. We found that family members had lower levels of distress when professional care providers involved them as partners in their relative's treatment and provided family members with education about mental illness and its treatment, and advice about how to manage their relative's difficult behaviors.
The second study, conducted in collaboration with Dr. Marsha Mailick (UW-Madison) and Dr. Marty Krauss (Brandeis University), has been to investigate differences in the mental health of aging parents caring for an adult child with mental illness and of those caring for an adult child with developmental disabilities. We found that parents caring for a child with mental illness experienced elevated levels of depression and caregiver burden, and greater pessimism about their child's future care than parents caring for an adult son or daughter with mental retardation. This line of research also has led to new insights into the differential effectiveness of coping and social support across different caregiving contexts.
In collaboration with Dr. Marsha Mailick, I am presently completing
a five-year NIMH funded longitudinal study of over 200 aging parents
caring for an adult son or daughter with schizophrenia. This study
examines the long-term toll that coping with mental illness takes on
parental and family well-being. It also explores the involvement of
and the effects on the lives of siblings when aging parents are no
longer able to remain in a primary caregiving role. This study has
been designed to parallel Drs. Mailick and Krauss' longitudinal study of
461 aging families caring for a son or daughter with Down syndrome
(R01 AG08768, Years 1-10), and their funded longitudinal study of 400
families of adults with autism (R01 AG08768, Years 11-15). The
availability of these data allows us to conduct the first large scale
multiwave longitudinal analysis comparing the experiences of aging
families of adults with schizophrenia to those of aging families of
adults with Down syndrome and autism. The findings will provide new
insights into how the services needs of these families are uniquely
shaped by the nature of the adults disability.
Findings from this study point to the importance of maintaining an optimistic attitude in coping with the challenges of schizophrenia, autism, and Down syndrome. In addition, our findings indicate that mothers caring for a son with a dual diagnosis of mental retardation and schizophrenia are at particularly high risk for experiencing the deleterious effects of caregiving. Also, within the African American community, caregiving takes a greater toll on the physical health than the mental health of maternal caregivers. Finally, we found that siblings of adults with schizophrenia report that they expected to be involved in the future care of their sibling with schizophrenia after their parents death. However, there are many factors that will limit their involvement, including geographical distance and competing work and family responsibilities.
Woodman AC, Smith LE, Greenberg JS, Mailick MR. (2016) Contextual Factors Predict Patterns of Change in Functioning over 10 Years Among Adolescents and Adults with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders. 46(1):176-89. doi: 10.1007/s10803-015-2561-z.
Bishop-Fitzpatrick L, Hong J, Smith LE, Makuch RA, Greenberg JS, Mailick MR. (2016) Characterizing Objective Quality of Life and Normative Outcomes in Adults with Autism Spectrum Disorder: An Exploratory Latent Class Analysis. Journal of Autism and Developmental Disorders. 46(8):2707-19. doi: 10.1007/s10803-016-2816-3.
Hong J, Bishop-Fitzpatrick L, Smith LE, Greenberg JS, Mailick MR. (2016) Factors Associated with Subjective Quality of Life of Adults with Autism Spectrum Disorder: Self-Report Versus Maternal Reports. Journal of Autism and Developmental Disorders. 46(4):1368-78. doi: 10.1007/s10803-015-2678-0.
Smith LE, Hong J, Greenberg JS, Mailick MR. (2016) Change in the Behavioral Phenotype of Adolescents and Adults with FXS: Role of the Family Environment. Journal of Autism and Developmental Disorders. 46(5):1824-33. doi: 10.1007/s10803-016-2714-8.
Maenner MJ, Greenberg JS, Mailick MR. (2015) Association Between Low IQ Scores and Early Mortality in Men and Women: Evidence From a Population-Based Cohort Study. American Journal on Intellectual and Developmental Disabilities. 120(3):244-57. doi: 10.1352/1944-7558-120.3.244.
Song J, Mailick MR, Greenberg JS, Ryff CD, Lachman ME. (2015) Cognitive Aging in Parents of Children with Disabilities. Journals of Gerontology. Series B: Psychological Sciences. In Press.
Piazza VE, Floyd FJ, Mailick MR, Greenberg JS. (2014) Coping and psychological health of aging parents of adult children with developmental disabilities. American Journal on Intellectual and Developmental Disabilities. 119(2):186-98.
Song J, Mailick MR, Ryff CD, Coe CL, Greenberg JS, Hong J. (2014) Allostatic load in parents of children with developmental disorders: Moderating influence of positive affect. Journal of Health Psychology. 19(2):262-72.
Wolfe B, Song J, Greenberg JS, Mailick MR. (2014) Ripple effects of developmental disabilities and mental illness on nondisabled adult siblings. Social Science and Medicine. 108:1-9.
Smith LE, Greenberg JS, Mailick MR. (2014) The family context of autism spectrum disorders: influence on the behavioral phenotype and quality of life. Child & Adolescent Psychiatric Clinics of North America. 23(1):143-55.
Woodman AC, Smith LE, Greenberg JS, Mailick MR. (2014) Change in Autism Symptoms and Maladaptive Behaviors in Adolescence and Adulthood: The Role of Positive Family Processes. Journal of Autism and Developmental Disorders. In Press.
Wong JD, Mailick MR, Greenberg JS, Hong J, Coe CL. (2014) Daily Work Stress and Awakening Cortisol in Mothers of Individuals with Autism Spectrum Disorders or Fragile X Syndrome. Family Relations. 63(1):135-147.
Song J, Mailick MR, Greenberg JS. (2014) Work and Health of Parents of Adult Children with Serious Mental Illness. Family Relations. 1;63(1):122-134.
Mailick MR, Hong J, Rathouz P, Baker MW, Greenberg JS, Smith L, Maenner M. (2014) Low-normal FMR1 CGG repeat length: phenotypic associations. Frontiers in Genetics. 5:309.
Maenner MJ, Smith LE, Hong J, Makuch R, Greenberg JS, Mailick MR. (2013) Evaluation of an activities of daily living scale for adolescents and adults with developmental disabilities. Disability and Health Journal. 6(1):8-17.
Floyd FJ, Mailick Seltzer M, Greenberg JS, Song J. (2013) Parental bereavement during mid-to-later life: Pre- to postbereavement functioning and intrapersonal resources for coping. Psychology and Aging. 28(2):402-13.
Wong JD, Seltzer MM, Greenberg JS, Hong J, Almeida DM, Coe CL. (2012) Stressful life events and daily stressors affect awakening cortisol level in midlife mothers of individuals with autism spectrum disorders. Aging and Mental Health. 16(8):939-49.
Smith LE, Barker ET, Seltzer MM, Abbeduto L, Greenberg JS. (2012) Behavioral phenotype of fragile X syndrome in adolescence and adulthood. American Journal on Intellectual and Developmental Disabilities. Jan;117(1):1-17.
Barker ET, Greenberg JS, Seltzer MM, Almeida DM. (2012) Daily stress and cortisol patterns in parents of adult children with a serious mental illness. Health Psychology. Jan;31(1):130-4.
Smith LE, Greenberg JS, Seltzer MM. (2011) Social Support and Well-being at Mid-Life Among Mothers of Adolescents and Adults with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders. 2011 Dec 13. [Epub ahead of print].
Smith LE, Seltzer MM, Greenberg JS. (2011) Daily Health Symptoms of Mothers of Adolescents and Adults with Fragile X Syndrome and Mothers of Adolescents and Adults with Autism Spectrum Disorder. Journal of autism and developmental disorders. 2011 Dec 14. [Epub ahead of print].
Seltzer MM, Barker ET, Greenberg JS, Hong J, Coe C, Almeida D. (2011) Differential sensitivity to life stress in FMR1 premutation carrier mothers of children with fragile X syndrome. Health Psychology. 2011 Dec 12. [Epub ahead of print].