Original ArticleAcquiring medical services for individuals with mental retardation in community-based housing facilities
Introduction
For the most part of the 20th century, individuals with mental retardation (MR) were isolated and dependent on families or on state-operated residential care facilities. Various social, political, and economic forces, beginning with the civil rights and consumer movements of the 1960s, along with a growing public awareness of the negative aspects of institutional care created a climate conducive to closing institutions. The support of fiscal conservatives alarmed at the escalating costs of institutional care resulted in the social policy of deinstitutionalization (Davis et al., 2000, Horwitz et al., 2001).
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Background
There are an estimated 7.5 million Americans of all ages or approximately 3% of the general population living with MR (Grossman et al., 2000, President's Commission on Mental Retardation, 2002). Mental retardation affects nearly 30 million people or 1 in 10 families at some point in their lifetime (President's Commission on Mental Retardation, 2002). Care is provided by families and community-based residential facilities, including group homes, foster care, and supported living options (i.e.,
Study purpose
Persons with MR compose one of the most vulnerable populations that often rely on the judgment of non-family proxy decision makers to initiate health care and other services. This study focuses on the perceptions and experiences of agency directors as they attempt to acquire these services. Knowledge of these experiences will assist nurses in problem solving and advocating for the holistic competent care of individuals with MR.
Study setting
The public welfare department in the state where the study was conducted outlines the procedures for substitute health care decision making (Procedures for Substitute Health Care Decision Making, 1998). It establishes that in the absence of a designated health care proxy (i.e., legal guardian) or next of kin, facility directors become the health care decision makers, authorizing them to make treatment decisions or give consent for medical procedures. Proxy decision makers can determine the
Study sample
Thirteen directors of community service agencies were interviewed for this study. Study participants represented organizations that provide residential and support services for an estimated 1,400 individuals with MR from group homes, skilled intermediate care facilities, independent living arrangements, temporary respite services, and vocational and day programs. The study was conducted over a nine-county region, including four rural and five urban counties, in a northeastern state.
Methodology
After receiving institutional review board approval (IRB No. 14865) from the university and the college of medicine, the study was implemented in Fall 2002. Informed consent was obtained from all participants. Qualitative data were collected using a semistructured interview format, with interviews lasting approximately 60 min. Interviews were continued until no new thematic concepts were obtained.
Instruments
The interview guide consisted of 10 mostly open-ended and a few close-ended questions. An expert panel of eight nurses reviewed the instrument, which was developed by selecting questions from a literature review, for face validity. This panel included two nurses with graduate degrees and one nurse with a PhD. Each nurse had a minimum of 3 years to a maximum of 15 years of experience in disabilities nursing and in the direct care of individuals with MR.
The survey instrument included demographic
Data analysis
The lead researcher conducted all interviews and tape recorded and took notes for subsequent verbatim transcription. The transcribed interviews were content analyzed by a team of three researchers using thematic analysis as described by Lincoln and Guba (1985). Patterns were categorized and dominant themes, based on data analysis, were identified. The content analysis also used interrater agreement as a measure of consistency in coding responses. Summary data of the interviews were shared with
Results
Of the 30 possible agencies/directors in the geographic area considered, 13 agency directors were interviewed, representing a 43% response rate. Those interviewed were directors of residential services who have held their position for an average of 6 years. In addition, the study participants had been working with MR for an average of 19 years, with a range of 10 to more than 30 years of experience.
The frequency and need for acquiring medical services varied, with a range from “infrequently” to
Theme 1: Effects of stigma
In analyzing the data, the stigma associated with MR was most evident. Stigma for the purpose of this study refers to the preconceived ideas or notions held by society that impact an individual in a negative way. Webster's Dictionary defines it as “a mark of social disgrace” (Webster's Dictionary and Thesaurus, 1993, p. 974). The stigma of MR was evident as all respondents related experiences with various health care providers (i.e., nurses, doctors, dentists, and aides) with whom individuals
Clinical implications
This study has implications for nurses and other health care providers who encounter individuals with MR in emergency departments, inpatient units, and community settings. Knowledge about the difficulties experienced when accessing services can assist nurses as they advocate and provide care for this vulnerable population. These issues will become increasingly more important as the population of individuals with MR continues to age and have growing needs for services. Nurses can expect to
Conclusions
The experiences of community residential agency directors in acquiring medical services for individuals with MR were explored in this study. The study findings revealed that the stigma associated with MR presents numerous challenges in accessing services for individuals with MR. In some situations, medical care was delayed or denied. In addition, agency directors acknowledged the medical community's lack of knowledge regarding this population. Deficits in community and health care resources
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