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Mental Retardation; Special Healthcare Needs

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Author:    Patricia Shuman (RN, MSN)

Purpose/Goals

The purpose of this course is to assist nurses in identifying any special healthcare needs of Mentally Retarded adults and develop strategies in meeting those needs.

Objectives

After completing this course, the learner will be able to:

1. Define Mental Retardation and Intellectual Disability
   
2. Give examples of the characteristics of Intellectual Disability as opposed to Mental Retardation
   
3. Give examples of the characteristics of Intellectual Disability as opposed to Mental Retardation
   
4. Discuss barriers healthcare providers may identify in caring for mentally retarded adults.
   
5. Identify strategies the nurse may use in improving healthcare services for mentally retarded adults.

Mental retardation or Intellectual Disability affects about 1 - 3% of the population. There are many causes of mental retardation/intellectual disability, but doctors find a specific reason in only 25% of cases (NCBI, 2009).

Johnny is a 57-year-old male with an intellectual disability since birth. His IQ is below 50 but is able to take care of many of his personal needs but cannot live independently. Until 18 months ago he lived with his mother. After she died he went to live with a sister who is also his legal guardian. Johnny was now dealing with two big changes in his life. He had lost both his parents in less than a year and he was dealing with his grief at this loss. He was also moved away from the home where he had spent his entire life. His sister/guardian has found many obstacles and challenges in providing Johnny with appropriate services and healthcare.

Until recently the term Mental Retardation (MR) was used in the United States to describe this group of individuals. Currently the preferred term is Intellectual Disability (ID) for this same group of individuals. ID is defined as "… a disability characterized by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills. This disability originates before the age of 18" (American Association on Intellectual and Developmental Disabilities, 2011, pg 1). This is the exact same definition as the definition for Mental Retardation. It is important that these terms be synonymous as state and federal laws and regulations use the term mental retardation. It is used in law and public policy for determining eligibility for state and federal programs (American Association on Intellectual and Developmental Disabilities, 2011).
The American Association on Intellectual and Developmental Disabilities (AAIDD) moved to change the term from Mental Retardation to Intellectual Disability to showcase a change in focus and vision. The AAIDD offers the following reasons for the change:

  • It is less offensive to persons with disabilities
  • It is more consistent with internationally used technology.
  • It emphasizes the sense that intellectual disability is no longer considered an absolute, invariable trait of a person.
  • It aligns with current professional practices that focus on providing supports tailored to individuals to enhance their functioning within particular environments.
  • It opens the way to understanding and pursuing "disability identity," including such principles as self-worth, subjective well being, pride, engagement in political action, and more (American Association on Intellectual and Developmental Disabilities, 2011, pg 1).

It has been reported that individuals with ID have higher healthcare needs than the general population, but may have a lower quality of care than the general population and may access their healthcare service less often than the general population (Horrell, MacLean, & Conley 2006), (Jones, McLafferty et al, 2008).

There can be many reasons for these findings. Providers have described problems with communication with patients with ID and difficulty in obtaining adequate medical histories. They also report inadequate training and experience in working with these individuals (Horrell, MacLean, & Conley 2006).


"People with IDs are reliant on health management by proxy" (Cooper & et al, 2006). The individual must depend on his parent/guardian to take him for routine healthcare services, specialty services and emergent services. If the individual has limited communication abilities it makes the task even more difficult. The parent/guardian must be able to recognize that a health need is present and then make arrangements for an appointment with his healthcare provider. If the initial visit results in reassurance by the provider that all is well, even though the parent/guardian believes that there is a significant problem - it often will take considerable advocacy by the parent/guardian to get the additional care/evaluation that they believe is needed. Some parents/guardians may not be a strong enough advocate to pursue some of these issues.

As an example, Johnny's sister had noticed that he frequently had to return to the bathroom several times after urinating. Johnny said he still felt like he needed "to go" after leaving the bathroom. Upon questioning Johnny denied any pain of burning on urination. At their visit with the primary care provider, Johnny's sister described the problem and was asked to leave the room while Johnny was examined. Upon returning to the room, Johnny's sister was told every thing "looked fine." She then asked was his prostate enlarged and was told that the exam had not included examination of the prostate. She requested this be done and was asked to leave the room again. Upon her return she was told that his prostate was enlarged and they would start Johnny on some medication with follow up scheduled. Without the advocacy of his sister, Johnny's problem may not have been identified as quickly. It also raises the question of whether or not the physical exam of a "normal" male would have included a prostate exam without the need for additional patient questioning.

A study was done by Horrell, MacLean and Conley in 2006 on "Patient and parent/guardian perspectives on the healthcare of adults with mental retardation." They interviewed 12 adults and their parent/guardian on access to their primary care health provider, preventive health, patient knowledge of medications, their relationship with the primary care provider and communication (with the physician and with the system). Overall both groups reported satisfaction with their care but the focus of each group was different. The ID adults focused on concrete issues such as the friendliness of the provider and any discomfort with procedures. The parent/guardian group focused on more abstract themes such as advocacy for the patient, overall health and access to specialty care as needed. This study indicated that it would be valuable to collect more widespread data on this topic. A patient satisfaction questionnaire could be developed to measure many of the questions for the parent/guardian groups. Currently there are no patient satisfaction surveys for individuals with IDs. The surveys would have to be developed according to ability to respond to the required format. Tools such as this could be used to develop guidelines of care and guidelines to train and educate healthcare providers (Horrell, MacLean and Conley in 2006).

It is important that the primary care provider establish rapport and good communication with the patient with ID. It is essential that the provider address his questions to the patient and not just to the parent/guardian. This rapport promotes the cooperation of the patient and an overall improved experience for the patient. Treatments and procedures are better tolerated when the patient feels a sense of caring from his primary care provider. This is not dissimilar to reactions from all patients in a practice (Horrell, MacLean and Conley in 2006).

Roberta is a 61-year-old female diagnosed with ID as an adolescent (under the age of 18). Her parents are both deceased but she continues to live in the family home with the assistance of her sister who is also her guardian. Roberta has a primary care physician and also sees a psychiatrist for management of her anxiety. She does not like to take medications as a result of a hospitalization when she was younger. During that hospitalization she was given thorazine and mellaril She describes those medications as making her "feel like a zombie" and she requires reassurance that any new medications she is given are not thorazine or mellaril before she will take them. In the past Roberta's guardian had difficulties getting Roberta to take her medications. After looking into this problem, it was identified that Roberta's psychiatrist had been changed. Roberta's medications had not been changed but she had not had time to develop a rapport and "sense of trust" with her new psychiatrist. It took several extra visits for Roberta to establish that relationship with her new psychiatrist and be comfortable in taking her medications as prescribed.
In summary, the thought process on ID has changed over time. It is no longer regarded as a static diagnosis but "Most crucially, the emphasis shifted from providing programs to people with intellectual disabilities to designing and delivering support tailored to individuals to help them reach their highest level of functioning" (American Association on Intellectual and Developmental Disabilities, 2011, pg 2).

As part of the healthcare team nurses will interact with many patients with IDs. They must be able to look at each individual with the ethical principle of "respect for persons" as the guiding value in their work with these individuals (Lotan & Ells, 2010).

This principle is an attitude towards all persons which dictates that our actions "reflect an acceptance of individual differences and an appreciation of others' potential in shaping their own lives" (Lotan & Ells, 2010, pg 118). This value system will enhance the healthcare providers' work with ID patients and support the achievement of the goal of a more satisfactory quality of life for these individuals. This work can be a challenge but improved outcomes and quality of life fits in well with the code of ethics for Nursing.

References

American Association on Intellectual and Developmental Disabilities. (2011). Definition of Intellectual Disability. Retrieved January 31, 2011 from http://www.aaidd.org/content_100.cfm?navID=21

Cooper, S. Morrison, J. Melville, C. Finlayson, J. Allan, L. Martin, G. & Robinson, N. (2006). Improving the health of people with intellectual disabilities: outcomes of a health screening programmed after 1 year. Journal of Intellectual Disability Research. 50 (9), 667-677.

Horrell, S. MacLean, W. & Conley, V. (2006), Patient and Parent/Guardian Perspectives on the Healthcare of Adults with Mental Retardation. Mental Retardation. 44 (4). 239-248.

Jones, M. McLafferty, E. Walley, R. Toland, J. & Melson, N. (2008). Inclusion in Primary care for people with intellectual disabilities. Journal of Intellectual Disabilities. 12 (2). 93-109.

Lotan, G. & Ells, C. Adults with Intellectual and Developmental Disabilities and Participation in Decision Making: Ethical Considerations for Professional – Client Practice. Intellectual and Developmental Disabilities. 48(2) 112-125.

PubMed Health. (2009). Mental Retardation. Retrieved January 31, 2011 from http://www.ncbi.nlm.nih.gov