Sarah H. Ailey

Promoting sexuality across the life span for individuals with intellectual and developmental disabilities

Sexuality is a human right that is important to all individuals regardless of age, gender, orientation, or developmental level. Sexuality is closely related to a persons self-concept and self-esteem. Individuals with I/DD have a right to sexuality and sexual expression. Nevertheless, persons with I/DD have historically been denied this right, and many structural and attitudinal barriers exist to their healthy sexuality. Paradigms in sexuality education have shifted toward recognizing sexuality as a human right, a major life resource, and an integral part of ones makeup. To broadly address the development of healthy sexuality for individuals with I/DD, the issue needs to be normalized, not ignored or avoided; which means involving parents, staff, and professionals. Working with parents to overcome parental overprotection and social isolation is critical. Parents can provide opportunities for their sons and daughters to network and form meaningful personal relationships, with peers including encouraging association with peers outside of school or work hours.

Depression and Suicidal Ideation Among Mexican American School-Aged Children.

The purpose of this study was to describe depression and suicidal ideation rates in a community sample of 182 urban fourth and fifth grade Mexican American children using the Children’s Depression Inventory (CDI). We used a descriptive secondary data analysis design. The mean CDI score was 9.55 (SD = 5.8). Thirty-one percent fell in the depressed range using a clinical cut point of 12 and 7% fell into the depressed range using the non-clinical cut point of 19. Thirty-eight percent (n = 69) reported suicidal ideation. The depression rate was consistent with national rates. A non-clinical cut point of 19 showed that 87% of children reporting suicidal ideation were not identified as depressed. Many of these children do not report the most typical symptoms of depression. The results of this study provide school nurses with vital information to support efforts addressing the mental health needs of Mexican American children.

Clinical Trail Outcomes of the Mexican American Problem Solving Program (MAPS)

Depression among Mexican immigrant women and children exceeds national prevalence rates. Given the influence of maternal depression on children, a clinical trial testing the effects of the Mexican American Problem Solving (MAPS) program was designed to address depression symptoms of Mexican immigrant women and their fourth and fifth grade children (302 dyads) through a linked home visiting and after school program compared to peers in a control group. Schools were randomized to intervention and control groups. There were statistically significant improvements in the childrens health conceptions and family problem solving communication, factors predictive of mental health. Improvements in childrens depression symptoms in the intervention group approached statistical significance. These promising results suggest that refined school based nursing interventions be included in community strategies to address the serious mental health problems that Mexican immigrants face.

Modifying a social problem‐solving program with the input of individuals with intellectual disabilities and their staff

Social problem-solving programs have shown success in reducing aggressive/challenging behaviors among individuals with intellectual disabilities in clinical settings, but have not been adapted for health promotion in community settings. We modified a social problem-solving program for the community setting of the group home. Multiple sequential methods were used to seek advice from community members on making materials understandable and on intervention delivery. A committee of group home supervisory staff gave advice on content and delivery. Cognitive interviews with individuals with intellectual disabilities and residential staff provided input on content wording and examples. Piloting the program provided experience with content and delivery. The process provides lessons on partnering with vulnerable populations and community stakeholders to develop health programs.

Evaluating an Interpersonal Model of Depression among adults with Down syndrome.

The Interpersonal Model of Depression (IMD) based on the Theory of Human Relatedness (Hagerty, Lynch-Sauer, Patusky, & Bouwsema, 1993) is evaluated among adults with Down syndrome. One hundred subjects participated, with 32% having elevated depression scores and 40% stating they felt lonely. The relationship between depression, perceived social support, loneliness, and life satisfaction is statistically significant, F(6, 172) = 4.36, p < .001. Loneliness, social isolation, loss of sense of well-being, self-hate, and social withdrawal are important interpersonal manifestations and represent increasing levels of depression. Social and emotional loneliness are two dimensions of loneliness. The IMD provides a framework to assess depression in this population. Research on the efficacy of depression treatment based on the IMD is needed.

Hospitalizations of Adults With Intellectual Disability in Academic Medical Centers

Individuals with intellectual disability (ID) represent a small but important group of hospitalized patients who often have complex health care needs. Individuals with ID experience high rates of hospitalization for ambulatory-sensitive conditions and high rates of hospitalizations in general, even when in formal community care systems; however, no research was found on the common reasons for which this population is hospitalized. Academic medical centers often treat the most complex patients, and data from these centers can provide insight into the needs of patient populations with complex needs. The purpose of this study was to analyze descriptive data from the UHC (formerly known as the University Healthsystem Consortium; an alliance of 115 U.S. academic medical centers and 300 of their affiliated hospitals) regarding common reasons for hospitalization, need for intensive care, and common hospitalization outcome measures of length of stay and complications for adult (age ≥ 18) patients with ID. Findings indicate the need for specific attention to the needs of hospitalized patients with ID.

The Sensitivity and Specificity of Depression Screening Tools Among Adults with Intellectual Disabilities

This study describes the validity and the sensitivity and specificity of depression screening tools among adults with intellectual and disabilities (ID). Subjects (N = 75) were interviewed with the Beck Depression Inventory II (BDI-II) and the Glasgow Depression Scale for People with a Learning Disability (GDS-LD) and also completed a clinical interview with the Psychiatric Assessment Schedule for Adults with Developmental Disabilities 10 (PAS-ADD 10). Comparing screening results to clinical interview, the area under the Receiver Operating Characteristic (ROC) curve of the BDI-II is 0.90 and of the GDS-LD is 0.90. The sensitivity for the BDI-II is 89% and specificity 82% (score = 11). The sensitivity of the GDS-LD is 89% and specificity 82% (score = 13). Sensitivity and specificity are sufficient to identify individuals with ID who need depression treatment referral and who are suitable to participate in depression intervention research.

Beyond the disability: recognizing mental health issues among persons with intellectual and developmental disabilities

Current societal changes mean increased possibilities for individuals with I/DD to participate in work, family, and community life. However, as individuals with I/DD have at least the same prevalence of mental health disorders as the general population and possibly an increased susceptibility to some mental health disorders, their ability to participate in work, housing, and social opportunities is hampered. It is important to improve nursing education about the specific issues of mental health care of individuals with I/DD. An important area for nursing research and education are improved clinical and practice guidelines. Research on medications and other therapies in mental health care of individuals with I/DD is limited and has methodological limitations. Nursing education and training are holistic, and nursing has the potential of positive impact on practice, education, and research that will improve the mental health care of individuals with I/DD.

Development and Evaluation of a Mexican Immigrant Family Support Program

A report to Congress in the fall of 1998 warned that immigrant children are in a state of emergency regarding access to health care. This article presents the three phases involved in developing, implementing, and evaluating a Mexican American Problem Solving (MAPS) program designed to promote the mental health of families. Methods were Phase 1 focus groups to identify concerns and desired approaches for intervention; Phase 2 instrument assessment and prevalence assessment of mental health; and Phase 3 intervention testing. In Phases 1 and 2, 67% of mothers and 59% of children had mental health scores that required referral for evaluation. Participating mothers and children reported positive views of the intervention and showed significant improvements in mental health scores.

Rasch Analysis of the Mental Health Recovery Measure

Consumer-oriented recovery among people with mental illness has been discussed for more than two decades, but few reliable and valid recovery measurements are currently available. This study used Rasch methods to assess the Mental Health Recovery Measure (MHRM). Participants were 156 adults with mental illness who lived in the community. After the Rasch analyses, the MHRM was modified to a 26-item measure with a 4-point Likert scale. Unidimensionality was confirmed for the revised MHRM, and it also showed proper rating scale functioning and high reliability. The revised MHRM is sufficient to assess only those in the initial and middle stages of recovery. More high-recovery-level items are needed to assess people in a high-recovery stage. Occupational therapists can use the revised MHRM in future quantitative studies and program evaluation.