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.
As a result of the deinstitutionalization policies implemented in the 1970s, the health care of individuals with mental retardation has increasingly become the responsibility of community medical practitioners (Lennox, Diggens, & Ugoni, 1997). Relatively little is known about the quality of the health care services this population receives (Walsh & Kastner, 1999). We do, however, have some information regarding differences in the quality of health care for people with mental retardation compared to the general population and the attitudes of medical practitioners toward people with mental retardation. For instance, investigators have identified numerous unmanaged and/or undetected health conditions in people with mental retardation, ranging from hypertension and heart disease to hearing and vision impairments (Howells, 1986;Wilson & Haire, 1990). Despite similar or higher rates of contact with medical professionals compared to the general population (Beange, McDuff, & Baker, 1995; Wilson & Haire, 1990), people with mental retardation are less likely to receive routine preventative medical procedures (e.g., immunizations and cervical exams) (Kerr, Richards, & Glover, 1996). One could infer from these findings that individuals with mental retardation receive a lower quality of care than does the general population, despite a higher frequency of serious health problems.
Medical practitioners reportedly encounter a number of obstacles when providing treatment to individuals with mental retardation, including patient–physician communication, difficulty obtaining a health history, lack of training and experience in working with individuals who have mental retardation (Kerr, Dunstan, & Thapar, 1996; Lennox et al., 1997; Minihan, Dean, & Lyons, 1993). Investigators have suggested that medical practitioners' perceptions of people with mental retardation may affect the nature of the care they provide. Researchers in this area have found differences between physicians and other professionals in their perceptions and expectations of people with mental retardation. Wolraich and Siperstein (1983, 1986) found that physicians' expectations for people with mental retardation were generally lower than those of other professionals (social workers, psychologists, and educators). Similarly, Handler, Bhardwaj, and Jackson (1994) reported that medical students' expectations for people with mental retardation were significantly lower than were the expectations of allied health careproviders who primarily served individuals with mental retardation, suggesting that greater exposure to this population is correlated with higher expectations.
Despite the large body of literature on patient satisfaction, to date there are no published studies in which the attitudes of people with mental retardation and/or those of their parents/guardians toward the delivery of primary care services are measured. Currently, no patient satisfaction scale exists that has proven validity and reliability for use with individuals who have mental retardation. In a comprehensive search of the literature, we found only two studies in which researchers considered the perspective of people with mental retardation in regard to their health care. Hart (1998) conducted interviews with adults who have mental retardation and had been treated at a hospital in the preceding 3 years and found that a majority of the patients were not satisfied with the care they received. Bretherton and Gravestock (1996) administered a consumer satisfaction survey to patients with mental retardation regarding care at their outpatient psychiatric clinic. Those who were young, living independently, and less likely to be taking psychotropic medication reported higher rates of satisfaction. Although some researchers included brief questions about health care status and/or access to health care in quality of life studies (e.g., Hawkins, Kim, & Eklund, 1995; Hensel, Rose, Kroese, & Banks-Smith, 2002; Schalock, Keith, Hoffman, & Karan, 1989), none of them addressed an individual's satisfaction with their health care provider. People with mental retardation may be neglected in this body of research because of difficulties related to measuring their opinions (e.g., cognitive limitations and communication problems); however, this should not deter researchers from attempting to improve service delivery for this population. Family and/or parent/ guardian satisfaction has been measured in other health arenas, such as cancer care and pediatrics, and scales have been developed to assess family members' satisfaction with the health care their relative/ward received (e.g., Budreau & Chase, 1994; Kristjanson, 1993). Kristjanson suggested that family and patient satisfaction are different phenomena and varying expectations of health careproviders may exist for each group.
In addition, individuals with mental retardation may not be included in patient satisfaction research because it is assumed that they are incapable of evaluating their health care needs and experiences. However, Cea and Fisher (2003) examined the abilities of 30 individuals with mild mental retardation and 30 with moderate mental retardation to consent to treatment. They found that a majority of adults with mild mental retardation and nearly half of the those with moderate mental retardation were able to at least partially understand treatment information. Over 50% of adults with mild mental retardation were able to identify the risks and benefits of a given treatment.
Due to the lack of research specific to people with mental retardation in the area of health care, we conducted qualitative interviews to explore relevant themes and identify variables in need of further examination. As previously noted, qualitative approaches have been utilized in other health care arenas (e.g., cancer care) as a precursor to the development of quantitative instruments (e.g., Kristjanson, 1993). Our goals in the present study were to (a) describe the experiences that adults with mental retardation and their parents/guardians have had with the delivery of primary care services, (b) examine their level of satisfaction with these services, and (c) compare and contrast adult and parent/guardian attitudes regarding their experiences with primary care services.
Adults with mental retardation and their parents/guardians were contacted through two service providers in a rural western state. Nine women and 3 men, ranging in age from 17 to 61 years, and meeting the criteria for diagnosis of mild mental retardation (a Full-Scale IQ of 55 to 70 on a standardized intellectual assessment and significant deficits in adaptive behavior) were interviewed. Diagnoses had been determined previously by the referring agencies. In order to maximize participant ability to provide verbal responses, we interviewed only those individuals with mild mental retardation. Consequently, the results of this study cannot be generalized to the entire population of individuals with mental retardation. Disparities in cognitive ability within the sample were evident during the interview process. Most of the adults were capable of answering open-ended questions and demonstrated the ability to recall and describe their last visit to the primary careprovider. In contrast, some had difficulty with open-ended questions; therefore, in order to control for acquiescence, we often framed questions in an either/or format. Although 3 of the adults with mental retardation provided limited answers to the interview questions, all of them were able to identify their primary careprovider and recall their last visit.
Eight of the adults with mental retardation were single, 2 were divorced, and 2 were married to one another. Two participants resided in supported-living settings; 6, in a residential setting under 24-hour staff supervision with other individuals with mental retardation; and 2, at home with their parent/guardian. The married couple lived independently with minimal agency support. One parent/ guardian of each adult with mental retardation was interviewed, with the exception of the 2 married adults who did not have a legal guardian. A total of 9 parents/guardians were interviewed. One person served as a guardian for 2 adults with mental retardation, her biological daughter and grandson. With the exception of the married couple, the participants were matched adult–guardian pairs. Eight of the 9 guardians were immediate family members of their ward and had attended at least one medical appointment with that individual. One guardian was of no relation to her ward and had never attended a medical appointment with her. Because this guardian could not provide specific information about the primary care relationship, we did not include information from this interview in the summary of findings from the data analysis unless otherwise indicated.
The amount of time elapsed between the interview and the last appointment with the primary physician, as reported by adults and/or their parent/ guardian, ranged from 1 day to more than 1 year. Eleven of the 12 adults interviewed (92%) had visited their primary care provider within the last 6 months. From the 12 adult interviews, we collected information regarding 11 different physicians. The married adults saw the same physician for primary care services. Eleven of the adults with mental retardation in this study were receiving agency support services that typically included monitoring health issues and arranging regular checkups with the primary careprovider. The only adult with mental retardation who did not receive support services lived at home with her biological parents.
Of the 12 adults with mental retardation who were interviewed, all but 1 had an identified medical condition. One adult was diagnosed with obesity; 3, with a seizure disorder; 2, with hypothyroid syndrome; 2, diabetes; 1, Parkinson's disease. Two of these individuals had Down syndrome and a variety of medical complications related to this diagnosis. In addition, 1 of these adults used a wheelchair, and 4 were also receiving medical advice related to weight problems (3 were overweight and 1 was significantly underweight).
All of the adults with mental retardation were currently enrolled in the Medicaid Waiver program. One recently switched from a private insurance provider to Medicaid. Eleven of them had one primary care physician who they visited for regular checkups. One adult identified a physician during her interview, but her guardian related that she typically saw any doctor who was available at the local family practice. The length of the relationship with the primary careprovider ranged from less than 1 year to more than 10 years. The majority of the adults had been seeing the same provider for more than 5 years. Three of them changed providers in the last year because the previous providers had moved out of the area. Because 2 of these individuals had seen their new provider in the last month and the third individual had not yet seen the provider, we asked that they answer the interview questions with reference to the previous provider.
All participants provided informed consent prior to participating. If applicable, parents/guardians were required to sign a standard informed consent form allowing their ward to participate. Informed consent forms were simply worded for adults with mental retardation and were read aloud to them. In addition, in order to establish informed consent following the explanation of the study, we asked each participant with mental retardation the following five questions taken from Hensel et al. (2002): (a) What will I be talking to you about? (b) How many times will I want to talk to you?; (c) Are there any good things about talking to me? (d) Are there any bad things about talking to me? (e) What can you do if you decide you don't want to talk to me? All adults with mental retardation provided acceptable answers to the questions with minimal prompting. No one refused to participate.
Data were collected via individual semi-structured interviews. Flynn (1986) and Hart (1998) conducted studies using in-depth interviews with people with mental retardation and found that they were able to answer open-ended questions and provide a sufficient amount of information. In this study, we used an interview guide to ensure that the following pertinent topics were addressed with each participant: the availability of the primary health careprovider, technical aspects of care (routine preventative procedures, patient's knowledge of medication), general relationship with the provider (patient's comfort level), and communication (at both the physician and systems levels). These topics were derived from patient satisfaction instruments developed to evaluate the delivery of primary care services (Bredart et al., 1999; Budreau & Chase, 1994;Flocke, 1997; Ireys & Perry, 1999; Kristjanson, 1993). The wording of questions was not standardized, but was modified to meet the needs of each interviewee. As data collection and analysis progressed and new themes appeared, these themes were added to the interview guides to be addressed in future interviews. Generally, the interviewer began by asking the subject an open-ended question about the topic (e.g., “Tell me about your physician/ nurse”) then probed with more specific questions if an area was not addressed (e.g., “How long have you been seeing your doctor/nurse?”). Separate interview guides were utilized for adults with mental retardation and their parents/guardians because different issues were relevant to each group (e.g., feelings about presence of parent/guardian during physical exam).
Parent/guardian participants were more capable of answering open-ended questions and provided more spontaneous responses compared to the adults with mental retardation; therefore, the interview guide described above was relied on less heavily with this subset of participants. Adult participants with mental retardation did provide some spontaneous responses to open-ended questions, and these are described below, but these responses were generally less substantive in nature. As a result, more specific questions derived from the interview guide were required for this sample subset.
Interviews were conducted with 11 adults who had mental retardation and 6 parents/guardians over a 4-month period. One adult with mental retardation was interviewed with her guardian present per her request. Two guardians were interviewed over the telephone due to distance and scheduling difficulties. Interviews with the adults who had mental retardation ranged in time from 10 to 35 minutes; interviews with parents/guardians, from 15 to 55 minutes. Audio-taped interviews were transcribed verbatim. We used the constant comparative method described below to analyze the data.
The grounded theory approach (Glaser & Strauss 1967) guided our data collection and analysis. Taylor and Bogdan (1998) noted that: “The grounded theory approach is a method for discovering theories, concepts, hypotheses, and propositions directly from data rather than from a priori assumptions, other research or existing theoretical frameworks” (p. 137). The analysis began with data collection followed by open coding, which involves the examination of the transcribed interview records and simultaneous notation of various core concepts noted by the researchers. The constant comparative method (Glasser & Strauss, 1967) was used to make within- and between-group comparisons and identify higher order themes incorporating core concepts identified during the open-coding process (Camic, Rhodes, & Yardley, 2003). This method is designed to generate theory as opposed to proving or disproving theories; therefore, data are coded and collected simultaneously. There are no specific procedures for this process; however, researchers should identify relationships between the various pieces of data throughout the coding process, distinguishing commonalities and differences. Coding continued throughout the data-collection process until saturation was reached, and the researchers could draw no new relevant information from the data. At this point we defined the prominent themes and made comparisons to the current relevant body of literature (Camic et al., 2003). Main themes generated from data analysis that are applicable to each study goal are discussed. Due to space limitations, we were unable to provide a detailed description of these qualitative methods. (For more comprehensive information, see Camic et al., 2003; Glasser & Strauss, 1967; Taylor & Bogdan, 1998).
Findings related to the experiences and satisfaction of adults with mental retardation are presented first, followed by findings from parent/guardian interviews. Themes were generated from spontaneous responses provided by participants to open-ended questions or prompts we used from the interview guide (e.g., “Tell me about your relationship with your physician”), and other responses to more specific inquiries from the interview guide are also described. Finally, we compare and contrast themes identified in the parent/guardian and adult with mental retardation groups.
Experiences and Satisfaction of Adults With Mental Retardation
Physicians served as the primary careproviders for all of the adults with mental retardation in this study. In the following section we summarize the responses of these adults to questions regarding technical aspects of the physician visit (e.g., physical exam) and their general relationship with the physician. Three themes were identified: dissatisfaction with various medical procedures and/or decisions, the physician's friendliness and likeability, and care and concern for the patient's well-being.
Adults with mental retardation overwhelmingly described positive experiences with the provision of primary care services, and 83% were happy with their provider. However, 4 adults voiced dissatisfaction with various medical procedures and/or decisions (e.g., pap smears, blood tests). They described the physical discomfort related to certain procedures (e.g., “I hate getting shots”), and some adults associated this discomfort with their feelings toward the primary careprovider. For example, one adult described her frustration over hospitalization: “Sometimes we have our ups and downs. … I went to see her one day and ended up having a seizure right in her office and so she stuck me in the hospital for three days. I didn't like that.”
A majority of individuals described physician's friendliness and likeability and the physician's care and concern for their well-being. Several described their physician as “nice,” and 2 mentioned the physician's sense of humor. One participant reported that she liked her physician because, “He knows what he's doing,” and another stated that she felt her physician understood her problems. Three adults mentioned the physician's concern for their health problems. For example, one stated, “Well, he asks me where it hurts, you know. … He's kind of concerned about my health problems.”
In addition to the themes discussed above, 2 adults with mental retardation reported some discomfort with having a doctor of the opposite sex. One stated, “I'm not used to talking to female doctors, but I got kind of used to it.” Another said that her current female physician was “better than the man [previous physician],” because “he was kind of hard to talk to about periods and stuff.”
Responses to specific inquiries
All but one of the adult informants (92%) were able to describe routine preventative procedures that were provided (e.g., weight, blood pressure). Five (42%) reported that the physician expressed concern about their weight. Of these, 4 were overweight and 1 was underweight. In 4 of the 5 cases, the adult was able to report suggestions they had been given to assist in weight management (e.g., exercise, diet). In addition, of the 9 females interviewed, 5 (56%) reported receiving regular pap smears, and 1 parent/ guardian reported that his daughter received a yearly pap smear.
Eight of the 12 adults (67%) verbalized a basic knowledge of their medication(s) (e.g., type, purpose). Three (25%) could not report the name or purpose of their medication(s). One adult (8.3%) was able to name his medication, but was unaware of the purpose. We note that the majority of the adults who lacked this knowledge demonstrated an overall deficit in their ability to participate in the interview. Three of these 4 individuals also had difficulty remembering many facts throughout the interview and were unable to provide a great deal of information in general.
The adults' comfort level with their physician was interpreted by their responses when asked to recall a time they may have felt confused or did not understand the information the doctor gave them. Six adults (42%) reported that they felt comfortable asking the doctor to explain the information, and 2 (17%) relied on the individual accompanying them to the appointment to explain the information. In sum, most adults felt comfortable communicating with their physician.
Experiences and Satisfaction of Parents/ Guardians
Analysis of data from interviews with parents/guardians of adults with mental retardation revealed several main themes: advocacy, insurance, specialist care, attention to specific health conditions, and agency support. These themes were identified when we analyzed responses that arose spontaneously during interviews with parents.
Forty-four percent of the parents/guardians interviewed suggested that their personal desire to advocate for their child/ward affected the quality of care their child/ward received. One parent stated, “We are not embarrassed about the situation at all and we're not afraid to be an advocate for ____________ [our child], and because of that she's not afraid to be an advocate for herself.” One guardian reported that she frequently attended the physician visits despite the fact that a staff member from her son's service organization also attended because “they're not going to be as aggressive in asking questions, or [finding out] what we can do.” Other parents/guardians described instances in which they were required to advocate for their child/ward by asserting their opinions about a procedure or another physician's recommendation to which they were opposed. For example, one guardian stated, “if there's stuff going on that I'm not happy about like with her [ward's] neurologist then we'll go to him (primary physician) and see what he has to say.”
Insurance was addressed in 6 of the parent/ guardian interviews (67%). Five parents/guardians (56%) were satisfied with the Medicaid system, and some described benefits their child/ward experienced as a result of this system. For example, one parent reported that her daughter received home nursing services, which included a monthly visit from a nurse and assistance in coordinating and accompanying the adult with mental retardation to various health care visits. Only 1 parent/guardian expressed frustration about insurance issues pertaining to the provision of primary care services. Several times during the interview, she expressed anger over refusal of services to her daughter because a past physician could not accept Medicaid patients, “and so fine [they] wouldn't be seeing any of the entire family. …I totally don't appreciate being turned away.” Overall, parents/guardians described positive experiences with the delivery of primary care services.
Five of the 9 parents/guardians (56%) were concerned about the child/ward's specific health conditions. Two were primarily concerned about their child/ward's seizure disorder; however, both were satisfied with the level of attention the primary care physician devoted to this issue. Obesity was a particularly salient issue for 3 parents/guardians. Each of them was concerned about the effects the weight gain may have on their child/ward's overall health; however, they were satisfied with the level of attention the primary care physician devoted to this issue.
As previously mentioned, 11 out of 12 adults with mental retardation (92%) were receiving agency support services. One adult who was not receiving these services lived at home with her biological parents. All of these agencies provided support for obtaining health care, including scheduling appointments, accompanying individuals to their appointments, and communicating necessary information to the parent/guardian. One guardian stated, “____________ [adult with MR's] meds were not administered correctly before she was with ____________ [the agency]” and cited an instance in which her sister with mental retardation experienced a psychotic episode as a result of her medications not being taken as prescribed. The second parent/guardian reported, “And we're pleased with the services they get from ____________ [the agency].” One parent complained about the agency that provided services to her son, stating that they frequently scheduled doctor's visits without her knowledge, and she felt that they were not taking as many preventative measures as possible. Despite these complaints she later stated, “But overall, I do feel like people at ____________ (the agency) care, they do what they can.”
In contrast to parents/guardians' overwhelmingly positive descriptions of experiences with current primary careproviders, they had varying opinions regarding the delivery of services by medical specialists, describing both positive and negative experiences. On the whole, 5 parents/guardians (63%) had positive interactions with specialists (e.g., “her eye doctor … has seen her since she was two and a half years old, long-term relationship there”), and 4 were dissatisfied with services their child/ward had received from specialists. For example, one parent stated, “That doctor [specialist] would not get a recommendation from me.” In general, they were satisfied with their child/wards' care provided by gynecologists, orthopedic surgeons, and psychiatrists. However, the majority of the descriptions of specialist services, whether positive or negative, did not appear to be associated with one specific category of specialists. For instance, both positive and negative statements were made regarding ophthalmologists and neurologists.
Responses to specific inquiries
Parents of adults with mental retardation were directly asked about their level of satisfaction concerning communication with the physician and the physician's general relationship with the adult with mental retardation. They reported overall satisfaction with the communication processes involved both at the personal and systems level. For instance, the physician's bedside manner (e.g., “____________ [the physician had] a good ability to calm ____________ [adult with MR] down”), the amount and quality of information received from the primary physician about medications, medical tests, or illnesses at the personal level. At the systems level, the majority of parents/ guardians were generally satisfied with the referral process and the communication between providers for their children/wards who were seeing specialists. One parent did express some dissatisfaction with the communication process with her son's physician. She reported a desire to speak independently with the physician regarding her concerns about her son, but stated that she did feel the physician would be open to meeting with her.
Sixty-seven percent of the parents/guardians addressed the level of care and concern displayed by the physician. One parent described an instance in which the physician illustrated concern for the patient's overall well-being, beyond the presenting problem: “She was concerned you know … and talked beyond the ear infection.” Another parent described the physician's interactions with her son as follows: “I do think he's a caring person and I see no change in ____________ [his] manner, because ____________ [my son] has a disability. … and I think he's concerned about ____________ [my son's] health.” Yet another described the physician's behavior toward her child as “patient and understanding.”
Forty-four percent of the parents/guardians interviewed felt they had a personal relationship with the primary physician, which seemed to facilitate trust in the physician and increase the parent/ guardian's level of comfort. Two described these personal relationships with their child/ward's current physician, and 2 regretted that their child/ward was no longer able to see the physician with whom they felt this closeness. Typically, parents/guardians described feelings of friendship toward the physician, and one parent referred to the physician by a nickname. Another guardian stated, “I mean there was more than a physician relationship there. …he came to our house as a friend as much as a physician.”
Comparison of Adult and Parent/Guardian Reports
The majority of adults with mental retardation and their parents/guardians were satisfied with the delivery of primary care services. Despite the similarity in these reports, different issues did arise for each group. For example, adults with mental retardation focused on immediate issues related to the delivery of primary care, such as the physician's friendliness and their personal discomfort with medical procedures. This focus on concrete issues is consistent with the developmental level of individuals with mild mental retardation, who may have limited capacity for abstract thought. Parents/guardians focused more on peripheral or abstract issues related to service delivery, such as advocacy, concerns about overall health of their child/ward, and the delivery of specialist services. Both groups of participants discussed the perceived level of concern the primary physician displayed regarding the health of the adult with mental retardation, but provided different examples of this theme. Whereas adults with mental retardation tended to interpret the physicians' general inquiries as indicative of concern, parents/guardians elaborated on that theme to describe physician behaviors, such as a willingness to examine the case beyond the presenting problem. For example, one adult with mental retardation, when asked to describe how he knew the physician was concerned about his problems stated, “Well, he's my doctor, that's why,” suggesting this characteristic is inherent to all physicians.
Our purpose in this study was to describe the experiences of adults with mental retardation and their parents/guardians with the delivery of primary health care services. Overall, both were satisfied with the delivery of primary care services to adults with mental retardation. Throughout the analysis, it became apparent that opinions regarding the delivery of primary care services were a complex phenomenon involving numerous variables, including the provider's interaction style, discomfort surrounding medical procedures, perceptions of the provider's level of concern for the patient, and parent/guardian ability to advocate for their child/ ward.
Overall, parents/guardians and adults with mental retardation reported positive experiences with the delivery of primary care services and were satisfied with the communication processes involved, both at the personal and systems level. Both adults with mental retardation and their parents/ guardians were comfortable with their physicians, and parents/guardians were satisfied with providers' staff (e.g., nurses), the ease of obtaining information related to treatment options and medication, and the referral process.
Generalization of these results is limited because of small sample size, cognitive functioning level of the adult participants with mental retardation, and the relatively homogeneous sample drawn from a rural state. This preliminary study was intended to identify possible issues related to the delivery of primary health care services to people with mild mental retardation. Qualitative research is inherently descriptive in nature, and the findings presented are intended to describe prominent themes apparent in the data, not to serve as definitive results. Small sample sizes are common in qualitative research, where the intent is not to generalize results to an entire population of people, but to utilize these results as a jumping off point to guide future researchers. To take part in the current study, individuals needed the verbal ability to participate in an interview in order to maximize responses; therefore, only those adults with mild mental retardation were interviewed. Consequently, our results cannot be generalized to the entire population of individuals with mental retardation. Regarding the rural nature of the sample, different issues may have surfaced if the sample had been drawn from a more diverse metropolitan area. All participants resided in cities with populations between 25,000 and 50,000. The access to care in these areas is likely to differ greatly from access in suburban or metropolitan areas with significantly larger populations, which are likely to have a wider variety of primary careproviders.
Results of the present study provide information about the ability of adults with mental retardation to participate in qualitative interviews. Despite the fact that responses to preliminary questions indicated that all adults with mild mental retardation were able to participate in the interview process, 3 of them had particular difficulty remembering facts and answering open-ended questions. This is not surprising, considering that individuals with mental retardation typically manifest memory deficits. The preliminary questions did not assess their ability to recall past events; therefore, memory would not have affected their responses to these questions. Although the number of individuals who exhibited particular difficulty during the interview process was small, in future qualitative studies it may be helpful to include only adults with mental retardation who had recently experienced the event in question (e.g., in the last month).
Researchers investigating the delivery of health care services to people with mental retardation have focused on the attitudes of medical practitioners toward providing services to this population (e.g., Kerr, Dunstun, & Thapar, 1996; Lennox et al., 1997) and the differences in the quality of health care provided to people with mental retardation compared to the general population (Kerr, Richards, & Glover, 1996). Medical practitioners have reported a variety of obstacles to providing care for people with mental retardation, including communication problems, difficulty obtaining an adequate health history, and communication problems (see Kerr, Dunstun, & Thapar, 1996; Lennox et al., 1997; Minihan, Dean, & Lyons, 1993). In this study we did not specifically address the training and experience primary careproviders had in working with adults with mental retardation. However, it can be inferred from the numerous reports of satisfaction with the primary careprovider that satisfaction with health care was not an issue for this sample. This may be a result of physician selection because many of the participants were affiliated with support agencies that made referrals to primary careproviders, and these agencies may have identified providers with experience treating individuals with mental retardation. The adults with mental retardation in this study had maintained relatively long relationships with their physicians, which would eliminate the difficulty of obtaining a health history. Long physician–patient relationships may be an artifact of a rural sample because the selection of providers is limited. Similarly, communication problems between the provider and patient were not an issue from the patient or parent/ guardian's perspective; however, an agency support person or parent/guardian accompanied every adult with mental retardation in this study to each appointment. It is likely that this support buffered this frequently reported problem.
We did not assess the presence of undetected or unmanaged health problems in our participants. Although it is possible that some could have been present, the majority of parents/guardians and adults with mental retardation reported satisfaction with their overall health. The majority of these adults were able to recall and describe a routine physical exam, including medical procedures such as pap smears, that have been identified in previous studies as a procedure physicians often neglect to perform on individuals with mental retardation. These discrepancies between the current study and past research may be a function of the amount of support the adults with mental retardation in this study received from outside agencies and their parents/guardians, which prevented them from “falling through the cracks” in the health care system. As previously mentioned, these discrepancies may also be a result of the rural nature of this sample.
We identified differences in the opinions of parents/guardians and adults with mental retardation regarding specific areas with which they were satisfied or specific expectations they maintained. For example, adults with mental retardation reported discomfort with medical procedures; this theme was not evident in the parent/guardian interviews. If researchers continue to focus solely on the opinions of parents/guardians, we may be missing factors that are important to the individuals being served. However, in this study adults with mental retardation did not describe experiences that are significantly different from those of the general population. For instance, they wanted to be listened to and feel that the physician was genuinely concerned for their well-being. These issues are similar to those assessed in patient satisfaction questionnaires that target a variety of populations (Bredart et al., 1999; Budreau & Chase, 1994; Flocke, 1997;Ireys & Perry, 1999; Kristjanson, 1993).
Our findings provide a foundation for further research on the health care experiences of adults with mental retardation. Themes identified here can be used to generate patient satisfaction scales for adults with mental retardation and/or their parents/guardians, enabling researchers to conduct larger scale quantitative studies. Results from this study suggest that topics typically addressed in patient satisfaction scales (e.g., bedside manner, the physician's perceived level of concern for the patient, the patient's understanding of the information provided by the physician, and level of comfort with various procedures) should be included in scales developed for people with mental retardation. Prior to utilizing any satisfaction measure with such individuals, it is necessary to evaluate their ability to respond in the required format. For example, if the individual must respond to statements using a Likert-type scale, it would be necessary to assess the individual's ability to utilize such a scale. Further, it may be necessary to alternate positively and negatively phrased items in order to control for acquiescence. Results from these studies could be used to develop guidelines for the care of individuals with mental retardation as well as guidelines for the training and education of health care professionals who will provide services to them.
Authors: Sarah C. Voss Horrell, MS, Graduate Student (SVHORREL@uwyo.edu); William E. MacLean, Jr., PhD, Professor, Department of Psychology, Department 3415, and Director of Clinical Training; and Virginia M. Conley, PhD, Assistant Professor, University of Wyoming, School of Nursing, Department 3065, 1000 E. University Ave, Laramie, WY 82071