Understanding and helping the mentally retarded Gwen H Dodge, RN, MS
Gwen H Dodge, RN, MS, has a BS in nursing and a master’s with a major in nursing education from the University of Colorado. She has worked with the mentally retarded as an instructor of student nurses at the State Home and Training School, Denver, Colo. The mother of a retarded child, she has worked with the teachers and students in his school. She is an AORN assistant director of education.
Mark, Laurie, and Alice live with 20 other people in a dormitory called Sunbeam. Mark, Laurie, and Alice are four, eight, and thirteen years old respectively. Their dormitorymates range in chronological age from three to twenty-five, but all are approximately on the same level functionally and socially. Sunbeam is a residential unit in a state home and training school for the mentally retarded. Mark wears a brace on one leg. Despite the brace and a congenital malformation of his leg, he is constantly on the move. The staff wonder why he is in the institution and have asked for a reevaluation of his development. They take him home with them whenever possible, and he has learned that autumn leaves are fun to play in, stoves are hot, and potatoes do not naturally come mashed. Mark has been at the state home since he was two weeks old. When he was born with the malformed leg, the attending physician advised his parents that he would be retarded and recommended immediate institutional placement. His parents have not seen him since his mother left the hospital postdelivery. Now, authorities cannot locate them. Laurie has been at the home for a year. She is a quiet, shy child with bright eyes and rosy cheeks. Laurie was apparently normal until age two, when she began to have etiologically unexplained seizures. A later developmental work-up revealed a progressive congenital syndrome in which cerebral deposits were impairing Laurie’s mental functioning. She is an only child of a young couple. Her parents would like to have other children, but they are afraid to risk a similar problem. Laurie was institutionalized because the state school was the only available facility equip-
AORN Journal, October 1976, V o l 2 4 , No 4
679
Levels of retardation Figure 1 Nomenclature Mildly retarded
Moderately retarded Severely retarded Profoundly retarded
Intelligence quotient
Achievable mental age (abstract thinking)
70-85 40-70
8-12 years 6-8 years 3Yz-6 years 0-3‘/2 years
20-40 0-20
ped to help her adapt to the rest of her short life. Her parents take her home every other weekend, but she no longer feels comfortable there and cries a t night to go “home.” Alice came to the state home from a hospital intensive care unit. At age seven, she contracted rubeola and subsequently developed encephalitis. After being comatose for six months, she was admitted to the institution on an emergency basis in that condition. She had been a bright, normal second grader prior to her illness. Now she is confined to a wheelchair because of severe muscle spasticity and contractures. She has poorly articulated speech, visual problems, and incontinency of bowel and bladder. Recently, she has relearned her name and is beginning to identify primary colors again. Her parents visit frequently, but maintain they cannot manage her physically at home. On one occasion, they took Alice home, but while there, she acquired the beginning of a sacral decubitus ulcer. The pressure sore eventually required surgery for closure. Alice’s older brother and sister refuse to acknowledge her except to threaten to leave home if she comes to visit again. The descriptions of these children illustrate the type of problems that afflict the mentally retarded, whether they are institutionalized or not. In
680
fact, institutionalization is no longer recognized as the social solution for care of the majority. Mental retardation experts advocate the benefits of family care in promoting growth and development. Progressive state governments are cognizant of the spiraling costs of minimal quality institutional care and prefer to channel funds into community-center day programs. Enlightened pediatricians are aware of the tendency for institutionalization t o breed its own form of retardation and are less ready to advise it as an alternative to other types of care. Public school systems are being forced to provide or buy educational services for these exceptional children. Many parents are no longer willing to place their children in institutional “warehouses” and have become increasingly assertive in the type and quality of care expected. Voluntary parent organizations assist families in coping with home care problems, furnish child sitter services, counsel siblings of retardates, establish demonstration projects, and create legislative pressure. Church groups provide appropriate religious training, state university hospital systems have established genetic and developmental evaluation clinics, and colleges have seen a n influx of young people committed to the special education field of retardation. States are separating di-
AORN Journal, October 1976, V o l 2 4 , No 4
visions of mental retardation from those on mental health after the realization that the two are separate entities. A few medical and nursing schools have begun to provide for their students a theoretical foundation and clinical practice in retardation. These much needed changes, while slow and sporadic, have far reaching ramifications for professional nurse practitioners. Home living retardates are subject to the same illness afflicting the rest of humanity and sometimes require hospitalization. Cost effective accounting in institutions dictates the use of existing medical facilities and personnel outside the institution. Thus, many more retardates are going to general hospitals and clinics for care. Public health nursing organizations are finding increasing numbers of retardates and their families in therapeutic and counseling caseloads. As more community facilities are established, the need for nursing expertise in conjunction with other services becomes apparent. Nurses must respond to these different demands and provide the quality service parents and the public expect. Unfortunately, many nurses are ill equipped educationally and experientially to meet the needs of retardates in health maintenance, illness prevention, and illness. A primary prerequisite is a basic informational background in mental retardation. A brief overview is offered here. Definition of mental retardation. Textbooks define mental retardation differently. Some authorities differentiate between mental retardation and mental deficiency in terms of the time a t which the intellectual deficit occurs. Mental retardation is a subaverage intellectual deficit that occurs during the developmental phase and results in inadequate social adjust-
ment. Mental deficiency occurs after development is complete. Other definitions are based on intelligence quotient, level of abstract reasoning, and functional capability. The former definition seems most realistic and objective because it uses developmental milestones as the basis for comparison. Intelligence quotients have two major disadvantages for use in mental retardation: (1) they label individuals and thereby increase the chances for bias and subjective appraisal of abilities; (2) they are inappropriate for application to cultural subgroups and persons with perceptual handicaps because norms are established on middle class groups with normal senses. A functional definition has merit because it focuses on a retardate's physical capabilities rather than his estimated mental ability. Caution must be used in applying it because retardates are similar to other people in respect to variances in possible physical and social achievement. Developmental milestone criteria incorporate phy'sical, social, and intellectual ability without using intelligence quotients and appear to be the least biasing for individuals. Figure 1 illustrates the IQ-mental age-chronological age approach to establish a basis for comparing it to the developmental milestone method. The following provides some additional details about the various levels of retardation identified in Fig 1. The mildly retarded. The mildly retarded are considered educable to the fourth or fifth grade level. They can hold responsible jobs, frequently marry, have children, and manage their lives reasonably well. They are contributing, nondependent members of society. The mildly retarded make up about 8W of the total retardation population. They have a slightly
AORN Journal, October 1976, Vol24, No 4
681
higher incidence of abnormal electroencephalograms and convulsive disorders when compared to normal individuals. There is a higher incidence of mild retardation among minority and lower socioeconomic groups, which is believed to be environmentally produced. However, there are no known socioeconomic boundaries for mental retardation. The moderately retarded. Moderately retarded persons constitute 15% to 20% of all retardates. They are trainable in daily living skills; however, the true extent of their capabilities is highly individual and really unknown. A few have learned to read and write. They can hold routinized manual labor positions in the community or in sheltered workshops. They are able to live in halfway houses or alone providing supervision is available. For optimal adjustment, persons moderately retarded require structure and a predictable routine in their lives. They generally respond quite well to operative conditioning or positive reinforcement techniques. The severely and profoundly retarded. These retarded persons usually require custodial care and constitute the largest group of retardates in most institutions today. They tend to present difficult management problems such as erratic behavior, uncontrollable seizure activity, severe medical problems, and physical handicaps hard to manage in the home. The more retardation evident the more likely there is to be associated physical handicaps and a n identifiable etiological cause for the retardation. Magnitude of the problem. There are between six and one-half to seven million retardates in the United States today. As the population increases and better medical care becomes available, more retardates are identified. Esti-
682
mates indicate that approximately 150,000 infants born each year will only achieve a mental age of seven during their lifetimes. The economic and social consequences of this chronic health problem are impossible to calculate, but it affects all citizens in the United States, whether they know it or not. Etiology of mental retardation. The causes of mental retardation can be categorized in several ways. The following method is relatively simple. 0 Preconceptual. These causes are found in women medically designated as high-risk mothers. Such factors include: pregnancy before age 16 and after 38; social causes such as poor nutrition, weather variables a t the time of conception, poor attitudes toward health, presence and degree of control exercised on chronic disease; past obstetrical history including spontaneous abortions, stillbirths, and other obstetrical problems; and genetic abnormalities such as chromosomal and biochemical disorders. 0 Prenatal. One factor in prenatal etiology of mental retardation is exposure of pregnant women to infection with the critical time period being the first trimester. Rubella, cytomegalic inclusion disease (salivary gland virus disease), syphilis, toxoplasmosis, and uncontrollable kidney and bladder infections are the chief infectious culprits. Radiation is another prenatal factor, although the amount a particular fetus can tolerate is unknown. Spontaneous abortion, stillbirths, and microcephaly in live newborns are known to be caused by excessive radiation. Emotional influences on the fetus were discredited by science for a long period; however, today’s thinking is somewhat reversed. Studies of unwed mothers seem to indicate their emotional problems affect the fetus in ad-
AORN Journal, October 1976, Vol24, No 4
verse ways. Malnutrition of the mother during pregnancy, living in high altitudes, and smoking during pregnancy have been linked to the birth of SGA (small for gestational age) infants who have a higher incidence of mental retardation because of chronic cerebral hypoglycemia. Drugs used by pregnant women have been demonstrated as causative factors. Among those incriminated have been nose drops, aspirin, excessive amounts of vitamins, sulfa preparations, iodides, progesterone, cancer chemotherapeutic agents, and perhaps corticcsteroids. Certain substances produce a toxic effect on mother and fetus. One example is mercury ingestion. A number of retarded Japanese children have been born to mothers who ate mercury-poisoned fish. Other causative factors identified are relatively well known: intracranial hemorrhage during labor; anoxia, particularly from the umbilical cord wrapped around the fetus’s neck; and Rh and other blood factor incompatibilities. Postnatal. Postnatal factors causing retardation are in effect from one month postbirth throughout adolescence. The chief agents are accidents and other trauma creating cerebral damage. Another cause is infection. Western equine and rubeola encephalitis may produce mental retardation, Pseudomonas and Staphylococcus meningitis have also been implicated. Smallpox and pertussis vaccine have led to encephalopathy resulting in mental retardation. This is the primary reason for public health officials’ recent recommendation against routine smallpox vaccination for young children. Poisoning by oral ingestion of drugs or other agents is a known factor causing retardation. Fifty percent of poisoning under five years of age is due to drug ingestion;
aspirin is the leading drug ingested, followed closely by barbiturates, tranquilizers, and the “pill.” Malnutrition under six months of age deprives the developing brain of glucose and leads to mental retardation. Degenerative brain conditions resulting from metabolic abnormalities destroy cerebral functioning. Nursing responsibilities. Nurses have a twofold responsibility in mental retardation. The primary responsibility is informing the public about prevention of the problem. It is therefore incumbent on every nurse to know the causes of mental retardation and expound and reinforce preventative health measures, whether at work, at home, or in the community. Nurses should be able to identify incipient problems in children in their neighborhoods and be aware of possible resources to confirm the nature of these problems and assist children and their parents in confronting them. The nurse’s second responsibility is to assist these victims of circumstance in ways that will make them less dependent members of society. Not all nurses can work intensely and closely with the retarded. However, every nurse ought to be able to work with them for short periods of time. In treating the retarded, pity for the individual is out of order. They neither want nor need it. Many cannot evaluate pity because they are not aware of what they lack or are missing intellectually. They may manipulate the pitying person. To pity the retarded is to handicap them in achieving their potential. Nurses tend to assume a n overabundance of the nurturing aspect of their professional role when dealing with the retarded, or they simply ignore them, or they curse the retardate’s inability to carry out
AORN Journal, October 1976, V o l 2 4 , No 4
683
therapeutic regimens. Even worse, they may laugh at or ridicule retarded individuals. None of these approaches is helpful. Nurses must come to grips with their feelings about retardation and retarded individuals. As a first step, conferences with knowledgeable leaders who will permit negative and positive expression of feelings and fears are advantageous. The second step is emotional and intellectual acceptance of the retardate as more nearly normal than abnormal in needs, feelings, and fears. One frequent expression of professionals is the question, “What possible purpose does the continued existence of retardates serve?” Basically, the question deals with the moral issue of euthanasia to which I am not prepared to respond. It is sufficient to say that I believe contact with, and caring for, the retarded enhances immeasurably the capability and humanness of the caring person. Nursing care planning conferences are a must in caring for the hospitalized retardate. Parents of the retardate should be included in those conferences. Staff cannot develop a blueprint approach and apply it to every retardate anymore than they can do the same for patients with normal intelligence. The staff must also put aside their prejudices and tendencies to control hospital territory and truly listen to what parents say and suggest. Staff are prone to believe that they alone have the wisdom and wherewithal to manage hospitalized patients, regardless of circumstances. This is not likely to be the case with the retardate whose daily routine is severely altered by hospitalization. Threats, either physical or verbal, will not alter undesirable behavior of the retardate in an alien environment. As with most humans, these techniques negatively reinforce the behavior. Nurses would do well to learn
684
positive behavior shaping or conditioning methods for these and all patients. Focusing on what the person can do instead of what he cannot do prevents frustration for all concerned. Relating to the retardate on his plane of reference is essential for the individual’s psychological comfort and physical cooperation. An adult’s body size is one of the greatest deterrents t o relating adequately to the retarded. One must know and remember the level of abstract reasoning available to the retardate and make this the clue to interpersonal interaction. On the other hand, the retardate’s adult body has adult physical needs and drives. These two apparent inequalities create problems when not properly sorted. Returning to the retardates described at the beginning, for the first time, Mark is with his natural parents who were finally located. His psychological testing demonstrated a bright child who was institutionally retarded. On a more sorrowful note, and with unknown consequences, his two siblings were told that he had died at birth. Much difficulty was encountered in convincing the parents that Mark was not retarded, and they required a lengthy interval to accept their child into the home. Alice continues to live in the institutional school and has begun to learn once more to count and play ball with her retarded schoolmates. She enjoys their company, and they help her get around by pushing her wheelchair. Laurie is confined to bed, now unable to walk or sit up, and is experiencing some pain from muscle spasms. Her mother comes every day to visit, and despite the pain of moving, Laurie lies in her mother’s lap to be rocked. It seems to help the pain. She is surrounded all day and night by other loving people who are devoted to her comfort in life and believe in the ultimate peace of death. 0
AORN Journal, October 1976, Vol24, No 4
Gwen H Dodge, RN, MS, has a BS in nursing and a master’s with a major in nursing education from the University of Colorado. She has worked with the mentally retarded as an instructor of student nurses at the State Home and Training School, Denver, Colo. The mother of a retarded child, she has worked with the teachers and students in his school. She is an AORN assistant director of education.
Mark, Laurie, and Alice live with 20 other people in a dormitory called Sunbeam. Mark, Laurie, and Alice are four, eight, and thirteen years old respectively. Their dormitorymates range in chronological age from three to twenty-five, but all are approximately on the same level functionally and socially. Sunbeam is a residential unit in a state home and training school for the mentally retarded. Mark wears a brace on one leg. Despite the brace and a congenital malformation of his leg, he is constantly on the move. The staff wonder why he is in the institution and have asked for a reevaluation of his development. They take him home with them whenever possible, and he has learned that autumn leaves are fun to play in, stoves are hot, and potatoes do not naturally come mashed. Mark has been at the state home since he was two weeks old. When he was born with the malformed leg, the attending physician advised his parents that he would be retarded and recommended immediate institutional placement. His parents have not seen him since his mother left the hospital postdelivery. Now, authorities cannot locate them. Laurie has been at the home for a year. She is a quiet, shy child with bright eyes and rosy cheeks. Laurie was apparently normal until age two, when she began to have etiologically unexplained seizures. A later developmental work-up revealed a progressive congenital syndrome in which cerebral deposits were impairing Laurie’s mental functioning. She is an only child of a young couple. Her parents would like to have other children, but they are afraid to risk a similar problem. Laurie was institutionalized because the state school was the only available facility equip-
AORN Journal, October 1976, V o l 2 4 , No 4
679
Levels of retardation Figure 1 Nomenclature Mildly retarded
Moderately retarded Severely retarded Profoundly retarded
Intelligence quotient
Achievable mental age (abstract thinking)
70-85 40-70
8-12 years 6-8 years 3Yz-6 years 0-3‘/2 years
20-40 0-20
ped to help her adapt to the rest of her short life. Her parents take her home every other weekend, but she no longer feels comfortable there and cries a t night to go “home.” Alice came to the state home from a hospital intensive care unit. At age seven, she contracted rubeola and subsequently developed encephalitis. After being comatose for six months, she was admitted to the institution on an emergency basis in that condition. She had been a bright, normal second grader prior to her illness. Now she is confined to a wheelchair because of severe muscle spasticity and contractures. She has poorly articulated speech, visual problems, and incontinency of bowel and bladder. Recently, she has relearned her name and is beginning to identify primary colors again. Her parents visit frequently, but maintain they cannot manage her physically at home. On one occasion, they took Alice home, but while there, she acquired the beginning of a sacral decubitus ulcer. The pressure sore eventually required surgery for closure. Alice’s older brother and sister refuse to acknowledge her except to threaten to leave home if she comes to visit again. The descriptions of these children illustrate the type of problems that afflict the mentally retarded, whether they are institutionalized or not. In
680
fact, institutionalization is no longer recognized as the social solution for care of the majority. Mental retardation experts advocate the benefits of family care in promoting growth and development. Progressive state governments are cognizant of the spiraling costs of minimal quality institutional care and prefer to channel funds into community-center day programs. Enlightened pediatricians are aware of the tendency for institutionalization t o breed its own form of retardation and are less ready to advise it as an alternative to other types of care. Public school systems are being forced to provide or buy educational services for these exceptional children. Many parents are no longer willing to place their children in institutional “warehouses” and have become increasingly assertive in the type and quality of care expected. Voluntary parent organizations assist families in coping with home care problems, furnish child sitter services, counsel siblings of retardates, establish demonstration projects, and create legislative pressure. Church groups provide appropriate religious training, state university hospital systems have established genetic and developmental evaluation clinics, and colleges have seen a n influx of young people committed to the special education field of retardation. States are separating di-
AORN Journal, October 1976, V o l 2 4 , No 4
visions of mental retardation from those on mental health after the realization that the two are separate entities. A few medical and nursing schools have begun to provide for their students a theoretical foundation and clinical practice in retardation. These much needed changes, while slow and sporadic, have far reaching ramifications for professional nurse practitioners. Home living retardates are subject to the same illness afflicting the rest of humanity and sometimes require hospitalization. Cost effective accounting in institutions dictates the use of existing medical facilities and personnel outside the institution. Thus, many more retardates are going to general hospitals and clinics for care. Public health nursing organizations are finding increasing numbers of retardates and their families in therapeutic and counseling caseloads. As more community facilities are established, the need for nursing expertise in conjunction with other services becomes apparent. Nurses must respond to these different demands and provide the quality service parents and the public expect. Unfortunately, many nurses are ill equipped educationally and experientially to meet the needs of retardates in health maintenance, illness prevention, and illness. A primary prerequisite is a basic informational background in mental retardation. A brief overview is offered here. Definition of mental retardation. Textbooks define mental retardation differently. Some authorities differentiate between mental retardation and mental deficiency in terms of the time a t which the intellectual deficit occurs. Mental retardation is a subaverage intellectual deficit that occurs during the developmental phase and results in inadequate social adjust-
ment. Mental deficiency occurs after development is complete. Other definitions are based on intelligence quotient, level of abstract reasoning, and functional capability. The former definition seems most realistic and objective because it uses developmental milestones as the basis for comparison. Intelligence quotients have two major disadvantages for use in mental retardation: (1) they label individuals and thereby increase the chances for bias and subjective appraisal of abilities; (2) they are inappropriate for application to cultural subgroups and persons with perceptual handicaps because norms are established on middle class groups with normal senses. A functional definition has merit because it focuses on a retardate's physical capabilities rather than his estimated mental ability. Caution must be used in applying it because retardates are similar to other people in respect to variances in possible physical and social achievement. Developmental milestone criteria incorporate phy'sical, social, and intellectual ability without using intelligence quotients and appear to be the least biasing for individuals. Figure 1 illustrates the IQ-mental age-chronological age approach to establish a basis for comparing it to the developmental milestone method. The following provides some additional details about the various levels of retardation identified in Fig 1. The mildly retarded. The mildly retarded are considered educable to the fourth or fifth grade level. They can hold responsible jobs, frequently marry, have children, and manage their lives reasonably well. They are contributing, nondependent members of society. The mildly retarded make up about 8W of the total retardation population. They have a slightly
AORN Journal, October 1976, Vol24, No 4
681
higher incidence of abnormal electroencephalograms and convulsive disorders when compared to normal individuals. There is a higher incidence of mild retardation among minority and lower socioeconomic groups, which is believed to be environmentally produced. However, there are no known socioeconomic boundaries for mental retardation. The moderately retarded. Moderately retarded persons constitute 15% to 20% of all retardates. They are trainable in daily living skills; however, the true extent of their capabilities is highly individual and really unknown. A few have learned to read and write. They can hold routinized manual labor positions in the community or in sheltered workshops. They are able to live in halfway houses or alone providing supervision is available. For optimal adjustment, persons moderately retarded require structure and a predictable routine in their lives. They generally respond quite well to operative conditioning or positive reinforcement techniques. The severely and profoundly retarded. These retarded persons usually require custodial care and constitute the largest group of retardates in most institutions today. They tend to present difficult management problems such as erratic behavior, uncontrollable seizure activity, severe medical problems, and physical handicaps hard to manage in the home. The more retardation evident the more likely there is to be associated physical handicaps and a n identifiable etiological cause for the retardation. Magnitude of the problem. There are between six and one-half to seven million retardates in the United States today. As the population increases and better medical care becomes available, more retardates are identified. Esti-
682
mates indicate that approximately 150,000 infants born each year will only achieve a mental age of seven during their lifetimes. The economic and social consequences of this chronic health problem are impossible to calculate, but it affects all citizens in the United States, whether they know it or not. Etiology of mental retardation. The causes of mental retardation can be categorized in several ways. The following method is relatively simple. 0 Preconceptual. These causes are found in women medically designated as high-risk mothers. Such factors include: pregnancy before age 16 and after 38; social causes such as poor nutrition, weather variables a t the time of conception, poor attitudes toward health, presence and degree of control exercised on chronic disease; past obstetrical history including spontaneous abortions, stillbirths, and other obstetrical problems; and genetic abnormalities such as chromosomal and biochemical disorders. 0 Prenatal. One factor in prenatal etiology of mental retardation is exposure of pregnant women to infection with the critical time period being the first trimester. Rubella, cytomegalic inclusion disease (salivary gland virus disease), syphilis, toxoplasmosis, and uncontrollable kidney and bladder infections are the chief infectious culprits. Radiation is another prenatal factor, although the amount a particular fetus can tolerate is unknown. Spontaneous abortion, stillbirths, and microcephaly in live newborns are known to be caused by excessive radiation. Emotional influences on the fetus were discredited by science for a long period; however, today’s thinking is somewhat reversed. Studies of unwed mothers seem to indicate their emotional problems affect the fetus in ad-
AORN Journal, October 1976, Vol24, No 4
verse ways. Malnutrition of the mother during pregnancy, living in high altitudes, and smoking during pregnancy have been linked to the birth of SGA (small for gestational age) infants who have a higher incidence of mental retardation because of chronic cerebral hypoglycemia. Drugs used by pregnant women have been demonstrated as causative factors. Among those incriminated have been nose drops, aspirin, excessive amounts of vitamins, sulfa preparations, iodides, progesterone, cancer chemotherapeutic agents, and perhaps corticcsteroids. Certain substances produce a toxic effect on mother and fetus. One example is mercury ingestion. A number of retarded Japanese children have been born to mothers who ate mercury-poisoned fish. Other causative factors identified are relatively well known: intracranial hemorrhage during labor; anoxia, particularly from the umbilical cord wrapped around the fetus’s neck; and Rh and other blood factor incompatibilities. Postnatal. Postnatal factors causing retardation are in effect from one month postbirth throughout adolescence. The chief agents are accidents and other trauma creating cerebral damage. Another cause is infection. Western equine and rubeola encephalitis may produce mental retardation, Pseudomonas and Staphylococcus meningitis have also been implicated. Smallpox and pertussis vaccine have led to encephalopathy resulting in mental retardation. This is the primary reason for public health officials’ recent recommendation against routine smallpox vaccination for young children. Poisoning by oral ingestion of drugs or other agents is a known factor causing retardation. Fifty percent of poisoning under five years of age is due to drug ingestion;
aspirin is the leading drug ingested, followed closely by barbiturates, tranquilizers, and the “pill.” Malnutrition under six months of age deprives the developing brain of glucose and leads to mental retardation. Degenerative brain conditions resulting from metabolic abnormalities destroy cerebral functioning. Nursing responsibilities. Nurses have a twofold responsibility in mental retardation. The primary responsibility is informing the public about prevention of the problem. It is therefore incumbent on every nurse to know the causes of mental retardation and expound and reinforce preventative health measures, whether at work, at home, or in the community. Nurses should be able to identify incipient problems in children in their neighborhoods and be aware of possible resources to confirm the nature of these problems and assist children and their parents in confronting them. The nurse’s second responsibility is to assist these victims of circumstance in ways that will make them less dependent members of society. Not all nurses can work intensely and closely with the retarded. However, every nurse ought to be able to work with them for short periods of time. In treating the retarded, pity for the individual is out of order. They neither want nor need it. Many cannot evaluate pity because they are not aware of what they lack or are missing intellectually. They may manipulate the pitying person. To pity the retarded is to handicap them in achieving their potential. Nurses tend to assume a n overabundance of the nurturing aspect of their professional role when dealing with the retarded, or they simply ignore them, or they curse the retardate’s inability to carry out
AORN Journal, October 1976, V o l 2 4 , No 4
683
therapeutic regimens. Even worse, they may laugh at or ridicule retarded individuals. None of these approaches is helpful. Nurses must come to grips with their feelings about retardation and retarded individuals. As a first step, conferences with knowledgeable leaders who will permit negative and positive expression of feelings and fears are advantageous. The second step is emotional and intellectual acceptance of the retardate as more nearly normal than abnormal in needs, feelings, and fears. One frequent expression of professionals is the question, “What possible purpose does the continued existence of retardates serve?” Basically, the question deals with the moral issue of euthanasia to which I am not prepared to respond. It is sufficient to say that I believe contact with, and caring for, the retarded enhances immeasurably the capability and humanness of the caring person. Nursing care planning conferences are a must in caring for the hospitalized retardate. Parents of the retardate should be included in those conferences. Staff cannot develop a blueprint approach and apply it to every retardate anymore than they can do the same for patients with normal intelligence. The staff must also put aside their prejudices and tendencies to control hospital territory and truly listen to what parents say and suggest. Staff are prone to believe that they alone have the wisdom and wherewithal to manage hospitalized patients, regardless of circumstances. This is not likely to be the case with the retardate whose daily routine is severely altered by hospitalization. Threats, either physical or verbal, will not alter undesirable behavior of the retardate in an alien environment. As with most humans, these techniques negatively reinforce the behavior. Nurses would do well to learn
684
positive behavior shaping or conditioning methods for these and all patients. Focusing on what the person can do instead of what he cannot do prevents frustration for all concerned. Relating to the retardate on his plane of reference is essential for the individual’s psychological comfort and physical cooperation. An adult’s body size is one of the greatest deterrents t o relating adequately to the retarded. One must know and remember the level of abstract reasoning available to the retardate and make this the clue to interpersonal interaction. On the other hand, the retardate’s adult body has adult physical needs and drives. These two apparent inequalities create problems when not properly sorted. Returning to the retardates described at the beginning, for the first time, Mark is with his natural parents who were finally located. His psychological testing demonstrated a bright child who was institutionally retarded. On a more sorrowful note, and with unknown consequences, his two siblings were told that he had died at birth. Much difficulty was encountered in convincing the parents that Mark was not retarded, and they required a lengthy interval to accept their child into the home. Alice continues to live in the institutional school and has begun to learn once more to count and play ball with her retarded schoolmates. She enjoys their company, and they help her get around by pushing her wheelchair. Laurie is confined to bed, now unable to walk or sit up, and is experiencing some pain from muscle spasms. Her mother comes every day to visit, and despite the pain of moving, Laurie lies in her mother’s lap to be rocked. It seems to help the pain. She is surrounded all day and night by other loving people who are devoted to her comfort in life and believe in the ultimate peace of death. 0
AORN Journal, October 1976, Vol24, No 4
