Mental retardation最新文献

Individuals with mental retardation and their parents/guardians have long been neglected in health care research. In this study we used a qualitative methodology to describe the experiences adults with mental retardation and their parents/guardians have with the delivery of primary care services. Semi-structured in-depth interviews were conducted with 12 adults who had mental retardation and 9 parents/guardians. The grounded theory approach was utilized to guide data collection and analysis. Findings suggest an overall positive experience with primary care services. Unique themes were identified that distinguished parent/guardian experiences from those of adults with mental retardation, who focused on immediate, concrete issues related to service delivery, whereas parents/ guardians focused on more peripheral or abstract issues related to the delivery of primary care.

The topic of sexuality and romantic relationships of people with mild to moderate intellectual disabilities was examined. We developed a questionnaire to investigate the 76 respondents' sexual knowledge, attitudes, experience, and needs. During the interviews, observational data were gathered to check the validity of the instrument. Results show that sexuality and romantic relationships are important aspects in the lives of many persons with intellectual disabilities. Male respondents generally reported more sexual needs than did females. Correlations were found between sexual knowledge and attitudes and between attitudes and experience or needs, suggesting that general behavioral models may be fruitfully used to further explore the topic of sexuality among people with intellectual disabilities.

In-person semi-structured interviews were conducted with 7 homeowners selected by 6 state homeownership programs as representing good examples of homeownership by individuals with developmental disabilities. Recurring themes were found in the choice of a home, advantages and disadvantages of homeownership, handling problems, community relationships, finances, supports, future plans, and homeownership advice. Although the process of purchasing the home was described as lengthy and difficult and ownership brought unexpected problems, these were outweighed by the financial, social, and psychological benefits of owning one's own home. A variety of external factors, including some undue control of the process by service providers and family members, appeared to add to the difficulties homeowners faced. Implications for improvements in homeownership assistance programs are discussed.

In clinical practice, we have come across people with intellectual disability who have gender dysphoria and cross-dress. Here, we review the literature on this subject and present an illustrative case example. We searched databases, followed-up references from relevant articles, and contacted colleagues in the field. We found nine papers with case examples and one survey. Gender identity problems certainly occur in people with intellectual disabilities, and developmental perspectives are important in assessing and treating them. In some cases autistic spectrum disorder was co-morbid, for individuals with and those without intellectual disability. Aggression was also common. Documented treatments were primarily psychological and social and did not include hormones and sex reassignment surgery. Capacity to consent is a factor that determines treatment.

The concept of capacity, its ethical mandates, and a rationale for the assessment of capacity to execute a health care proxy was discussed. Special New York State regulations, relevant to the execution of a health care proxy by persons who have mental retardation, were reviewed, discussed, and compared with regulations in some other jurisdictions. Technical information about a health care proxy and the appropriate form for a simple health care proxy were described. A standard for psychologists and physicians to use in assessing the capacity of a person with cognitive impairments to execute a health care proxy is presented.

Using data from the Medical Expenditure Panel Survey for 2000 and 2002, we compared potential and realized use of health care for a national sample of working-age women with cognitive disabilities. Despite having similar likelihoods of potential access to health care as compared to nondisabled women, they had markedly worse rates of receiving cervical cancer and breast cancer screenings, similar rates of routine check-ups, and yet had better rates of receipt of influenza shots. They were also less likely to be satisfied with their medical care than were nondisabled women. Policy recommendations are suggested to address the disability-based disparities in reproductive health care for women with cognitive limitations.

A peer support intervention was developed to support aging caregivers and adults with developmental disabilities in planning for the future. The intervention consisted of a legal/financial training session followed by five additional small-group workshops. Pretest and 1-year follow-up surveys were conducted with 29 families participating in the intervention and 19 control families. Outcome measures included future planning activities, caregiving appraisals, discussion of plans with individuals who have developmental disabilities, and choice-making of individuals with developmental disabilities. The intervention significantly contributed to families completing a letter of intent, taking action on residential planning, and developing a special needs trust. Caregiving burden significantly decreased for families in the intervention and daily choice-making of individuals with disabilities increased.

Childhood injuries lead to increased morbidity and result in significant costs to public insurance programs. People with mental retardation, most of whom are covered by Medicaid, are at high risk for injury, which has implications for community inclusion, a central policy goal. Medicaid data from inpatient, outpatient, and long-term care settings represent an important new resource for injury surveillance in this population. Injury prevalence for 8.4 million Medicaid-eligible children in 26 states was measured using 1999 eligibility and claims data; 36.9% Medicaid beneficiaries ages 1 to 20 with mental retardation had at least one injury claim as compared with 23.5% of those without mental retardation. Prevalence rates are reported by gender and age for a variety of injury types.