Human Being is endowed with numerous abilities, mental, intellectual, social temperamental, motivational, attitudinal. But still some person is found deficient in some of the abilities. Sociological, biological and various environmental factors are responsible for the deficiency of the children. They suffer even from prenatal stage as a result of which they are born with several disabilities in mental and even in physical aspects. Though these deficiencies are not expected in the society, but it is the reality that these deficient children exist and they cannot be thrown out of the society. The society has the responsibility to take care of the specific deficiencies from which they suffer, and should render maximum effort to consider them sympathetically and provide them the service so that they can utilize their capacity is the maximum and be a part of the mainstream society.
Parenting is a challenging process. The crucial role of parents and family in caring, nurturing, protecting and socializing young children is well established across the cultures. Strong parent-child connectedness improves child academic outcomes, self esteem, mental health and has later protective effects of reducing the likelihood of alcohol and drug use in adolescence, high risk sexual behaviour and involvements in interpersonal violence (Lezin et al., 2004). Parenting can influence children’s social, emotional, and academic adjustment, efforts have been made to determine factors that affect parenting behavior. One such factor is parenting stress. Parenting stress can be defined as excess anxiety and tension specifically related to the role of a parent and to parent-child interactions.
When the parents learn that the child is having some form of disability, it causes enormous distress to them. Giving birth to a mentally challenged children or other disabled child is an unexpected stressful event which affects the whole family. Such an event may impair family development and may continue over time affecting the entire family system. The presence of a mentally challenged child in the family has far reaching implication for the family as a whole.
The impact of the disability and problem associated with it are not restricted to the child but extend far beyond the child and affects a number of areas of family functioning as well as individual’s adjustment. Parents go through intense emotional and psychological stress and may have fewer resources of emotional gratification. They may consider mentally handicapped child as a threat to their self esteem and view themselves as a source of disability. They struggle to cope with the financial costs, parents also are confronted with new and unexpected experiences. Parents with disabled child may have higher levels of stress and lower levels of well being than with the normal children (Rangaswamy and Bhavani, 2008). In order to have better understanding of the factors that influence parenting stress which plays a crucial role in development of child both normal and challenged, the present study was undertaken with the objective to compare the level of stress among parents between normal and mentally challenged children.
The World Health Organization defines it as a condition of arrested or incomplete
development of the mind which is characterized by impairment in motor and social skills and
language ability. The degree of impairment varies from one child to another and also
depends on the degree of mental retardation. Many children with mental retardation might
also have coexisting conditions like autism, Down’s syndrome, cerebral palsy, Attention
Deficit Hyperactivity Disorder (ADHD) and epilepsy (fits) which need further attention and
care. The more severe the mental retardation, the more help the child needs to look after
himself/herself. Usually, when a child is mentally retarded, the family’s complete focus is on
the child and how to help him/her to the best possible extent. However, as caregivers to this
child, the family members (the parents, siblings, grandparents or other relatives) go through a
significant amount of stress and anguish themselves in the process of raising such a
child. Hrithik’s parents are a typical example of such a family.
Intellectual disability (ID), also called intellectual development disorder (IDD) or general learning disability (Wilmshurst, ; Linda, 2012) and formerly known as mental retardation (MR),( Tidy,n; Colin, 2013) is a generalized neurodevelopmental disorder characterized by significantly impaired intellectual and adaptive functioning.
The diagnostic term ‘mental retardation’ has already been eliminated. The American Psychiatric Association (APA)’s fifth revision of its Diagnostic and Statistical Manual for Mental Disorders (DSM-5), (Rosa’s Law, 2010) and the WHO in its next 11th edition of the International Classification of Diseases (lCD-11) will revise their terminology (Ansberry, ; Clare, 2010). Intellectual disability affects about 2–3% of the general population. 75–90% of the affected people have mild intellectual disability. Idiopathic cases accounts for 30–50% of cases. About a quarter of cases are caused by a genetic disorder (Daily, ; Ardinger, 2000). Cases of unknown cause affect about 95 million people as of 2013 (GBDS, 2013). Children with intellectual disability learn more slowly comparative to a normal child. Intellectually disabled (ID) children may take longer to learn language, develop social skills, and take care of their personal needs, such as dressing or eating. Learning will take them longer, require more repetition, and skills may need to be adapted to their learning levels. They may also exhibit some or all of the following characteristics: (Ansberry, ; Clare, 2010)
? Delays in oral language development
? Deficits in memory skills
? Difficulty learning social rules
? Difficulty with problem solving skills
? Delays in the development of adaptive behaviors such as self-help or self-care skills such as getting dressed, using the bathroom, and feeding oneself
? Lack of social inhibitors
To a parent, every child is special in his or herown way. They want their child to be physically and developmentally perfect. But children with ID have special needs that challenge parents to find ways to best prepare these children for the future and to handle any problem that may appear. For these the parents often face enormous strain on their psychological and economic resources.
Mental retardation (MR) is a condition diagnosed before age 18, usually in infancy or prior
to birth, that includes below-average general intellectual function, and a lack of the skills
necessary for daily living. When onset occurs at age 18 or after, it is called dementia, which
can coexist with an MR diagnosis. Intelligence level as determined by individual standard
assessment is below 70, and the ability to adapt to the demands of normal life is impaired.
This is important because it distinguishes a diagnosis of MR from individuals with low IQ
scores who are able to adapt to the demands of everyday life. Education, job training, support
from family, and individual characteristics such as motivation and personality can all
contribute to the ability of individuals with MR to adapt. Other behavioral traits associated
with MR (but not deemed criteria for an MR diagnosis) include aggression, dependency,
impulsivity, passivity, self-injury, stubbornness, low self-esteem, and low frustration
tolerance. Some may also exhibit mood disorders such as psychotic disorders and attention
difficulties, though others are pleasant, otherwise healthy individuals. Sometimes physical
traits, like shortness in stature and malformation of facial elements, can set individuals with
MR apart, while others may have a normal appearance.
Mental retardation is caused by many factors; many of these are known, but others remain unidentified (The Arc, 2005). The link between the identification of specific causes of mental retardation and the development and implementation of preventive measures is clear. When a cause is identified, ways to prevent the debilitating effects of cognitive disabilities have often followed soon after. But it takes action for solutions actually to prevent or reduce the impact of the condition.
According to The Arc, a parent organization advocating for individuals with mental retardation, several hundred causes of mental retardation have been discovered, but for about one-third of those affected the cause is unknown (The Arc, 2005). Of those known causes, three conditions are the most common reasons for mental retardation:
1. Down syndrome
2. Fragile X syndrome
3. Fetal alcohol syndrome
Many different systems for organizing the causes of mental retardation can be applied. Sometimes they are divided into four groups: socioeconomic and environmental factors, injuries, infections and toxins, and biological causes. AAMR divide them instead into three groups by time of onset—that is, by when the event or cause first occurred (AAMR, 2002):
1. Prenatal: causes that occur before birth
2. Perinatal: causes that occur during the birth process
3. Postnatal: causes that happen after birth or during childhood
Prenatal causes exert their effects before birth. Examples include genetic and heredity, toxins taken by the pregnant mother, disease, and neural tube defects. Genetics and heredity include conditions such as fragile X syndrome and Down syndrome, as well as phenylketonuria (PKU). Prenatal toxins include alcohol, tobacco, and drug exposure resulting from the behavior of the mother during pregnancy. Diseases and infection, such as HIV/AIDS, can devastate an unborn baby. Neural tube disorders, such as anencephaly (where most of the child’s brain is missing at birth) and spinal bifida (incomplete closure of the spinal column), are also prenatal causes of mental retardation.
Perinatal causes occur during the birthing process. They include birth injuries due to oxygen deprivation (anoxia or asphyxia), umbilical cord accidents, obstetrical trauma, and head trauma. They also include low birth weight. Postnatal causes occur after birth. The environment is a major factor in many of these situations. Child abuse and neglect, environmental toxins, and accidents are examples of postnatal causes. An additional reason for being identified as having mental retardation is societal biases, particularly toward diverse students.
Today, more than 500 genetic causes associated with mental retardation, many of them rare biological conditions, have been identified (The Arc, 2001). For example, fragile X syndrome is an inherited disability caused by a mutation on the X chromosome, and it was identified in 1991. It is now recognized as the most commonly known inherited cause of mental retardation, affecting about 1 in 4,000 males and 1 in 8,000 females (Crawford, Acuna, & Sherman, 2001). A
common associated condition is recurrent otitis media (middle ear infection) with resulting hearing and language problems. Cognitive disabilities can be severe. Many of these individuals are challenged by limited attention span, hyperactivity, stereotypic behaviors (such as hand flapping or hand biting), and an inability to relate to others in typical ways.
Another example of a genetic cause for mental retardation due to a chromosomal abnormality is Down syndrome (a chromosomal disorder wherein the individual has too few or too many chromosomes). The nucleus of each human cell normally contains 23 pairs of chromosomes (a total of 46). In the most common type of Down syndrome, trisomy 21, the 21st set of chromosomes contains three chromosomes rather than the normal pair. Certain identifiable physical characteristics, such as an extra flap of skin over the innermost corner of the eye (an epicanthic fold), are usually present in cases of Down syndrome. The degree of mental retardation varies, depending in part on how soon the disability is identified, the adequacy of the supporting medical care, and the timing of the early intervention. ~e great majority of people with Down syndrome have a high incidence of medical problems (National Down Syndrome Society NDSS, 2005).
Poisons that lurk in the environment, toxins, are both prenatal and postnatal causes of mental retardation, as well as of other disabilities. Many believe that the increased rates of attention deficit hyperactivity disorder, learning disabilities, and even autism are due to some interplay of genetics, environmental factors, and social factors (Office of Special Education Programs, 2000; Schettler et al., 2000). Clearly, exposures to toxins harm children and are a real source of disabilities. Here are two reasons why toxins deserve special attention:
1. Toxic exposures are preventable.
2. Toxins abound in our environment.
One well-recognized cause of birth defects is fetal alcohol syndrome (FAS), which is strongly linked to mental retardation and results from the mother’s drinking alcohol during pregnancy. FAS are recognized by Congress as the most common known cause of mental retardation. It costs the U.S. taxpayers 5.4 billion dollars in 2003 alone, and the costs in quality of life to the individuals affected and their families are immeasurable (U.S. Senate Appropriations Committee, 2004). The average IQ of people with FAS is 79, very close to the cutoff score for mental retardation. This means that almost half of those with FAS qualify for special education because of cognitive disabilities. This group’s average adaptive behavior score is 61, indicating a strong need for supports. These data explain why some 58 percent of individuals with FAS have mental retardation and why some 94 percent require supplemental assistance at school. Unfortunately, most of these people are not free of other problems in the areas of attention, verbal learning, and self-control. Estimates are that some 5,000 babies with FAS are born each year. An additional 50,000 show fewer symptoms and have what is considered the less serious condition fetal alcohol effects (FAE), which, like FAS, is caused by mothers drinking alcohol during pregnancy.
Toxins around in our environment. All kinds of hazardous wastes are hidden in neighborhoods and communities. One toxin that causes mental retardation is lead. Two major sources of lead poisoning can be pinpointed. One is exhaust fumes from leaded gasoline, which is no longer sold in the United States. The other source is lead-based paint, which is no longer manufactured. Unfortunately, however, it remains on the walls of older apartments and houses. Children can get lead poisoning from a paint source by breathing lead directly from the air or by eating paint chips.
Low Birth Weight
Low birth weight is a major risk factor for disabilities and is definitely associated, with poverty and with little or no access to prenatal care (Children’s Defense Fund. CDF, 2004). Medical advances of the 1980s have greatly increased the likelihood that infants born weighing less than 2 pounds will survive. These premature, very small infants make up less than 1.4 percent of all newborns and are at great risk for disabilities, including mental retardation. However, babies born between 3 and 5 pounds also are at greater risk for disabilities than many doctors and parents believe. Babies with moderately low birth weight represent 5 to 7 percent of all births, but they represent 18 to 37 percent of children with cerebral palsy and 7 to 12 percent of children with cerebral palsy who also have mental retardation. Whereas about 5 percent of White babies have moderately low birth weight, between 10 and 12 percent of African American babies are born early and have low birth weight.
Child Abuse and Neglect
Abused children have lower IQs and reduced response rates to cognitive stimuli (CDF, 2001, 2004). In one of the few studies of its kind, Canadian researchers compared abused children with those not abused, and the results of abuse became clear. The verbal IQ scores were very different between the two groups of otherwise matched peers: The abused children had an average total IQ score of 88, whereas the average overall IQ of their no abused peers was 101; and the more abuse, the lower the IQ score. The link between child abuse and impaired intellectual functioning is now definite, but the reasons for the damage are not known. Rather than resulting from brain damage, the disruption in language development caused by the abusive situation may be the source of permanent and profound effects on language ability and cognition. Or the abuse may itself be a result of the frustration often associated with raising children with disabilities. Remember, the connection between neglect and mental retardation has long been recognized and is part of the early history and documentation of this field.
Challenges the Families Face
Acceptance: When a doctor gives the parents the news that their child is mentally retarded and will never be completely normal, it is too painful for most parents to face. Many parents, like in Hrithik’s case, spend years in denial, trying to find some solution or cure to this problem. They might go from one hospital to another, try alternative forms of medicine or look to religion for a miracle. But mental retardation is not a disease and there are no medicines to cure it. It is a syndrome which is caused by genetic factors (chromosomal abnormalities like in Down’s Syndrome), hereditary causes (due to marriage between close relatives, previous incidences of mental retardation in the family) or due to brain damage of some sort. As hard as it is to accept, once parents realize that their child is mentally retarded and will always remain so, their expectations of the child will readjust accordingly. They can move on to taking the necessary steps to help the child make the most of his potential by going addressing his special needs through special education, vocational training etc.
Self-blame: The parents wonder if they did something wrong, during the course of the pregnancy or after birth, while taking care of the child. They wonder if God is punishing them for their sins.
Stigma: Many parents might feel that a mentally retarded child is something to be ashamed of and cannot be allowed out of the house. Neighbors, relatives or others might make cruel remarks about the child and parents might feel isolated and without support.
Helplessness: Many parents don’t know how to get help for their child once he/she has been diagnosed with mental retardation. The sense of helplessness comes both from a lack of understanding about mental retardation and a lack of information about the resources available for mentally retarded individuals. It might also arise from insensitive handling of the case by the mental health professional, who might not have enough time to talk to each family at length about their experience.
Behavior problems: Many parents find it difficult to handle behavior problems like screaming, crying, inability to concentrate, aggressiveness, stubbornness etc that a child with mental retardation might have. For parents, especially mothers, who have to take care of household tasks and work apart from taking care of the child, patience can wear thin. Getting angry with the child or hitting him/her also does not help very much. Often, the child might not understand how disruptive his/her behavior is to others and why they get angry.
Unrealistic expectations: Many times, parents of mentally retarded children are dissatisfied with the slow progress their child is making in learning new things. They push harder to force the child to learn quicker and try to be on par with other children. However, the child can only learn to the best of his/her ability and no more. If he/she has the mental age of a 8 yr old, he/she cannot be expected to undertake a normal vocation which requires complicated mental processes. When parents have unrealistic expectations of what their child can achieve, it leads to disappointment not only for them but also in the child who does not understand what he/she is doing wrong.
Worry about the future: One of the main concerns of parents with mentally retarded children is about how their children will be taken care of when they die. They feel that no one else can take care of their child with same love and care that they have and they are scared about how their child will manage to survive in the world.
Marital/family problems: Having a child who is mentally retarded places greater strain on a family than otherwise. Due to the extra tasks that have to be done to take care of the child, parents feel overworked, stressed out and unhappy. The marital relationship can become strained if the parents have different approaches in dealing with the child or if one parent has to take care of the child all the time. Sometimes, mothers might feel they are not getting enough support from their husband in taking care of the child. Fathers might feel that the mothers are unnecessarily worried and overprotective of the child. Other family members can complicate matters depending on how they react to the child.
All these reactions that a family experiences are completely normal. It takes time, support and accurate information to understand and accept what their child is. Even after coming to terms with the fact that mental retardation is incurable, it is very difficult to give up hope that someday something will make their child normal. This hope is what might keep most parents going. As long as this hope does not lead to demanding too much of the child, it is perfectly ok. There are professionals like psychiatrists, clinical psychologists, occupational therapists and counselors who can help you if you are going through a similar experience. For more information on special education schools and vocational training centre, you can contact the National Institute of Mental Handicap, Secunderabad or visit their website. For further information or counseling for the families of mentally retarded individuals, contact us at talkitover.
When a child is diagnosed as ID, it becomes difficult for the parents to raise the child. It is not only hard for the children with ID to deal with difficult situations while growing up, but also their parents and family members. In this situation the role of parents are crucial to how the life of a ID child shapes up to be. To some family the birth of a child with ID at home is likely to be one of the most traumatic events. Some parents are able to cope up with such a difficult situation and some experience psychological stress. In fact, parents as well as the whole family experiences a variety of ‘psychological stress’ related to the child’s disability. Parents and other children in the family must undergo a variety of changes to adapt to the presence of such a child. Parents already have enough stress to deal with in today’s world. Taking care of a child with special needs sometimes increases that stress. Parents of ID children undergo more than the average amount of psychological stress. There is no universal parental reaction to the added psychological stress of raising a retarded child (Kumar, 2008).
Study showed that Rural and urban parents show attitude difference towards the child with retardation and their social adjustment also get affected. Society plays an important role in the upbringing of mentally retarded child. Some parents may feel ashamed of their children with
retardation and consider them as a burden. Others may consider it as their duty to take care of such children. This may depend on background that can be a differentiating factor how the society views children with mental retardation. The subjects of lower and higher income did not show any significant difference in any of the variables (Ravindranadan, & Raju, 2007).
However, in 1994 Rao, conducted a study on ‘Behaviour disorders in moderately mentally retarded children and the relation to parental attitude’. The sample comprised of parents of 60 moderately mentally retarded boys and girls. The findings of this study indicated that parents have a negative attitude towards their children with mental retardation.The most important implication of this study is the need for uplifting the parent’s social and psychological well-being. It is expected that it will help the parents to deal effectively with their children having problem. Most of the time, the attitude of society towards ID can become a burden too difficult to bear for parents of a special child.
According to P. Roos (1977) ‘our society fosters myths that lead to totally unrealistic expectations. As children we learn to anticipate success, achievement, wealth, love, and status. We expect wise parents, loving and lovable mates, and perfect children’. It is difficult to fathom what the real picture is in regards to society’s behavior towards people with ID. Mental retardation is a formidable handicap in a complex society such as ours, which places great emphasis on intelligence and has little tolerance for deviation from cultural standards.
Now a days globally,the response of the society to a child with ID is changing. During the last two decades, all over the world, there has been a movement away from institutional care and towards family based care of individuals with ID. In Bangladesh, an overwhelming majority of child with ID have traditionally been cared for in their families. Therefore, in this context the family has the key role. Many factors can influence the well-being of a family. One factor is certainly the emotional and physical health of the parents (Ravindranadan, & Raju, 2007). They are the ones who deal with the issues associated with their child’s disability and they are also required to maintain the household. Therefore, it is very important as parents, to take some time to care for oneself as individuals. When the parents’ relationship is a strong and supportive one, it enriches family life for all members. Study showed that the presence of a child with special needs causes a crisis in the family. Most clinical observations shows that parents often are portrayed as exhibiting guilt, ambivalence, disappointment, frustration, anger, shame, and sorrow (Ravindranadan, & Raju, 2007). The way parents adapt to this stress is determined to a degree by their mental state and intelligence. Their religious beliefs, attitude and support from friends and relatives also play an important role. Apart from support from friends and relatives, the support from one spouse to another is paramount. A vast research has indicated the high level of marital satisfaction support from husband(s) as expressed by mothers of retarded children is an important facilitator to the family having a child with mental retardation. The elements of such support include encouragement, assistance and feedback. In 1981 Friedrich and Friedrich studied the differences between parents of mentally retarded and normal children. The results indicated that parents of mentally retarded children reported less satisfactory marriages, less social support, lower physical well-being than parents of normal children (Ravindranadan, & Raju, 2007).
Coping with ID children
Parents with ID children cannot have high expectations from their child, which they otherwise might have had with a normal child. According to P.Roos ‘Our yearning for perfection is often channeled into our children, through whom we hope to realize our frustrated aspirations and our thwarted dreams of achievement and happiness. A retarded child is usually an unsuitable vehicle for fulfilling such parental hopes (Shearer, 1977). If the parents have an only child who has ID, they need to come to terms with the fact that, they will always have a gap in that respect unfulfilled in their lives. They will need to cope with it by seeking other ways such as counselling to try and fill that gap. Therefore, the new perspectives have resulted in a renewed wave of hope and optimism that, in turn, has been reflected in increased emphasis on the provision of individualized programs geared to meet the specific learning needs of ID clients. Hence, the goal of programming for ID persons might be defined as assisting the individual to reach and maintain his optimum level of functioning rather than his maximum level of functioning (Shearer, 1977). It does not imply any denial of the retarded person’s handicap. It involves rather exploring his hidden mental and physical capacities, so that his handicap becomes less pronounced. It means also that the retarded person has the same rights and obligations as other people, so far as this is possible. Nirje defined the essence of the concept as ‘…..making available to the mentally retarded patterns and conditions of everyday life which are as close as possible to the norms and patterns of the mainstream of society’ (Nirje, & Bengt, 1969).
The growing acceptance of the normalization principle has given an increased emphasis upon individualization in programming for the ID. A key ingredient is the individual program plan, developed on the basis of a thorough interdisciplinary evaluation (by the Paediatritian and Child Psychiatrist) and consisting of: (Roos, & Brian, 1977)
(1) a specific statement of long- and short-term goals, stated in behavioral terms that will yield measurable indices of progress;
(2) the programmatic strategies that will be utilized to attain these goals;
(3) the persons responsible for carrying out the program and the training schedule to be followed; and
(4) a statement of the data that are to be collected in order to assess progress (Roos, & Brian, 1977).
It is encouraging to note that individual program plans must be accepted by the parents. When the parents of a child with ID also have other normal children, they need to make sure to create an environment where both their children can grow up properly together. The requirements of everyday needs will vary from a child with ID and a normal child. Therefore the parents will have to make special considerations. They also have to face the fact that their normal child will have a childhood with hardship as well. Parents need to spare the time for their normal children to explain the situation of their special sibling. A lot of times, the parents themselves have to absorb the ridicule that society will throw to their ID child. But they need to handle the situation when their other children will also become the object of scorn from society for having a ID brother or sister. There will also be a time, when the parents get old and cannot take care of their ID child. They will need to pass that responsibility to someone else. Often times, it will be their other children or family members or any institution. Therefore parents need to help create a strong bond between their child with ID and his/her siblings or relatives so they will not consider it as a burden to take care of him/her in the future.
Kinds of Support for Caregivers
Respite care gives caregivers a break from their caring responsibilities. It helps relieve stress and maintain their own health. Sometimes, friends and family members may be able to help caregivers, but help is also available from outside organizations. Home care businesses can provide paid care providers to assist the caregiver or allow them to take a break, although these are not free. Charities and community organizations can sometimes provide volunteer helpers for caregivers. Outside the home, day centers and residential care can both help support caregivers. Insurance, charity grants and state aid can all help with the cost of this kind of care.
Financial Support Being a caregiver can be financially draining. A full-time caregiver cannot work outside the home, and may well have to bear costs associated with caregiving. In particular, caregivers may be faced with significant medical costs for those they care for. The National Families Caregiver Support Program provides financial support for those caring for relatives aged 60 or older, and for grandparents caring for grandchildren with physical or mental disabilities. Grandparents caring for grandchildren can also receive support through the Temporary Assistance for Needy Families program. Other financial support is available through charities and local programs.
Emotional Support Caregivers benefit from receiving emotional, social and psychological support. Without such support, many caregivers begin to feel isolated and unhappy. Support can come from a number of different sources. Family members and friends can be a useful source of support, although it is not available to everyone. Online support groups and discussion boards provide an easy-to-access and informal support network. Support groups can provide regular, local human contact. Often, they are aimed at particular medical conditions, meaning they can provide specialized support. For caregivers who find themselves emotionally overwhelmed by their responsibilities, support from professional mental health services may be beneficial.
Medical Support Caregivers often have little medical knowledge themselves, and rely on support from medical professionals to carry out their role. If medical insurance does not cover the costs to the caregiver of accessing medical support, then support may be available through Medicare. Once funding has been found for medical support, it is important that caregivers engage with medical professionals to access as much support as they can. They should communicate with them and take an active role to gain knowledge and care giving advice.
Support & Help for Families with Intellectually Disabled Children
Within each person’s community, there are a variety of programs and services. Many of these services are designed to assist people with disabilities. Some of these services are specifically intended for families and other caregivers. The particular array of services available in any given community varies widely. Support coordination specialists (case managers) ensure service recipients receive the proper mix of services. Contact your local county services office to locate these services
Respite and emergency care services:
Respite services are available in many communities. These services are available to caregivers of intellectually disabled citizens. Respite services give families a chance to take a break from their daily care responsibilities. It is very helpful and refreshing for family members to take some time off. Most respite programs are provided through national organizations. The most well known are The Arc and the Easter Seal Society. Services may also be available through schools, churches, and other non-profit groups. Families are usually allotted up to four weeks of free respite services each year.
Family Therapy and Support Groups:
Parents of children with intellectual disabilities face many losses. The loss of their dreams, hopes, and aspirations for their child can cause great sorrow. Moreover, there remains a profound social stigma attached to intellectual disabilities. It can be an ongoing and difficult adjustment for families. They must learn to cope with a wide range of difficult emotions. Feelings of guilt, frustration, disappointment, uncertainty, worry, sadness, and grief are very common.
Advocacy and legal supports
Another powerful coping strategy is advocacy. Advocacy refers to actions that are taken on behalf of someone else to promote their welfare and rights. Thus, an advocate is someone who argues or pleads for another person’s cause. Advocates serve as a voice for people with intellectual disabilities who cannot easily advocate for themselves. Family members can affect the quality of care a disabled person gets. They should participate in decisions about services and not be afraid to speak up if something doesn’t sound right. The more families become actively involved, the less helpless they feel. When parents become involved in their children’s care, their children are less likely to require institutionalization. They are also more likely to enjoy a higher quality of life.
Support for siblings of intellectually disabled:
Siblings of children with intellectual disabilities need their own support. In recognition of these needs, The Arc has created the Sibling Support Project. It provides age-specific support and intellectual disability education. The Sibling Support Project trains local agencies to create projects that join sibling peers.
The onset and chronic presence of mental illness in the family can be a stressful event or a crisis for family members (Helena, 2006). Moving from a crisis to recovery in such families has been found to be influenced by their interactions with mental health professionals. Families that have ongoing contact with the mental health professionals are more likely to recover from the crisis and cope with the situation. Home based treatment programs for children and adolescents with mental disorders appear to be an effective and sustainable strategy for meeting mental health needs in this group (Schmidt,2006). These programs would also be cost effective in countries where the health system is overburdened with infectious diseases and where psychiatric inpatient-care is limited.
However, the success of such interventions requires compliance of patients and parents, and support from highly skilled therapists. Parents and guardians play a major role in helping children grow and develop to their full potential. As children grow in the families they most significantly depend on their parents or guardians for basic needs support such as food, shelter, education, protection and care at all times but especially during life difficulties and times of crisis. Mental disorders in childhood and adolescence can be chronic and very disturbing, requiring proper attention, help and support from caregivers (WHO,2003).
Thus, parents or guardians and relatives living with children with mental illness have additional responsibilities and roles to care for them as they do for other healthy children. In this study ‘children’ means any male or female persons not more than twelve years of age, and a ‘parent’ is a biological mother or father or anybody who assumes that role. The importance of family support for the growth and development of children and the role it plays as a determinant of whether children will receive mental health care or not, can not be overemphasized (Kazak, et.al, 2010). From the past until now the World Health Organization (WHO) mental health programme has not given due weight to child and adolescent psychiatry as compared to adults and the elderly (WHO, 2003). Yet from a demographic and epidemiologic point of view, mental disorders in children and adolescents represent an important area that needs proper attention. It is estimated that up to 20 % of children and adolescents suffer from debilitating mental illness (WHO, 2000).
There are various ways in which child and adolescent mental disorders can be considered. One way is looking at these disorders in a priority manner based on their frequency of occurrence, degree of impact, therapeutic possibilities, and long term care effects (WHO, 2003). From this perspective, child and adolescent mental disorders that pose a significant concern include learning disorders, hyperkinetic disorders (ADHD), depression and its associated suicide. Others include psychosis, pervasive development disorders, attachment disorders, anxiety disorders, conduct disorder, substance abuse and eating disorders.
Specialized mental health services for children have not yet been established in Tanzania (WHO, 2005). The few existing mental health facilities in the country are mainly for adults. Children with mental disorders are treated in general wards and alongside adult mental patients. Psychiatric patients (including children and adolescents) are exempt from cost sharing charges for treatment. Medication is available but not always due to limited government support. When not available, parents or guardians are supposed to buy medicine for their children from private pharmacies. Moreover, the country lacks health care workers who are specialized in child and adolescent mental health. There are very few special schools for children with disabilities including those with mental disorders. Initiatives to advocate for social welfare of children with disabilities are taking place and the government is aware of that.
Parents of mentally retarded children are known to experience many kinds? unusual impacts from the competitive society from time to manage and adjust to the best of their abilities. The impact includes, sad feeling of parents, depressed at various stages of child?s life with experiences of many other emotional reactions. Their social life is often affected without much recreation and leisure for many positive opportunities and activities to score for their credit. The presence of a child with mental retardation in the family also calls for lot of adjustment on part of the parents and the other family members based on the severity of the problem.
While raising a child with chronic condition, parents experience psychological stress and disappointment when their child does not meet their hopes and expectations (Barnett, Clements, Kaplan-Estrin, Fialka, 2003). Researchers has also indicated that greater the number of unmet needs , greater the number of emotional and physical problems reported by parents (Kasuya, Polgar-Bailey, Takeuchi, 2000) reveled that” a multidimensional response to physical, psychological, emotional, social and financial stressors usually associated with the experience of caring” Objective burden includes measurable effects such as economic burden, caregivers? loss of work, social and leisure activities, household disruptions such as child care, restrictions on relationships within and outside the family etc. Subjective burden is mainly the psychological sufferings of the caregivers themselves and is experienced by them such as depression, hatred, uncertainty, guilt, shame, embarrassment etc (Ravindranadan & Raju, 2007). Caring for those who are MRis often itself stressful as care-giving affects several aspects of caregiver?s lifenegatively including poor physical and emotional state (Vitaliano, Zhang, & Scalan, 2003). Caregivers experience depression, burden, less social support, and less coping resources than non-caregivers (Vitaliano et al.,2002). Further Peshawaria and venketasan and menon (1988) analysed the consumer demand of services and reported that the needs for training in communication , management of behavioral problems and training in self help area were the most important for parents for which they out services. Hence the present study was an attempt to study problems of mothers and fathers having a child with mental retardation.
Significant of the Study:
This study will be the useful and the first in this type of study in this area. This study will help to make the plans for mental retorted children. This study will not just help to make plans for mental retorted children but also helps to make the plans for the parents of mental retorted children.
To know the effects of children with intellectual disability (ID) on
families in Pakistan with special focus on the experiences of mothers living in nuclear and joint families.
(1) To explore the economic condition of the parents of mentally retorted children.
(2) To investigate the cultural perception about mental retorted children.
(3) To find out the social issues of the parents of mental retorted children.
What are the subjective experiences in families of children with mental retardation?
What are the cultural issues of parents with mental retorted children?
What are the social and economic issues of parents with mental retorted children?
Mental disability is associated with multifaceted risk factors (Voss et al., 2007). Unfavourable conditions during foetal life and traumatic factors during delivery may determine the mental status of children. Other factors are biological influences such as abnormal central nervous system, genetic factors, infections, poor nutrition and exposure to toxins. Further, psychosocial factors include dysfunctional family ties, parental psychopathology, large family size, poverty, and parenting styles and temperament. Even stressful events are thought to be linked to mental disabilities such as natural disasters. Peer group sibling influences – maladaptive peers and aggressiveness influence mental disorders in children.
Traditionally MD is associated with socio?cultural beliefs of a curse, of misfortune, and punishment from ancestors. It is associated with superstitions and religious beliefs. Having a child with MD affects families in a number of ways. Sen & Yurtsever (2007) observed that the birth of the child with MD in a family is a crisis in which the parents’ expectations are turned upside down. The few studies conducted in Tanzania reveal that communities are given inadequate information about MD (Adam, 2001). Many adolescents with MD are mistreated (e.g. sexually abused), or isolated, hidden away from the public; much of their mistreatment is due to fear of them. Furthermore, they are deprived of essential services including health care, education, food and social benefits. Many live in poor living conditions and their life expectancy is often shortened. However, some efforts have been made in Tanzania by societies and organizations to improve their lot. These include advocacy, education on human rights, empowerment and development of policies governing MD (Ngatunga, 2004).
Ravindranadan and Raju (2007) studied the level of adjustment and attitudes of parents of children with mental retardation. The sample consists of 50 parents (either mother or father) of children diagnosed as mentally retarded. Parental age group is 25-50 years. The results indicated that parental religion, education and income do not have any significant influence on adjustment variables, but there is change in parental attitude among different religious groups. Locality of parents influences only on the dimensions of social adjustment and parental attitude.
Chandorkar ; Chakroborty (2000) studied psychological problems of parents of mentally retarded children compared to that of parents of normal children The result of the study proved that the parents of mentally retarded children have a higher prevalence of psychological morbidity than the parents of normal children.
Poston, et al (2003) investigated the conceptualization of family quality of life. Focus groups and individual interviews were conducted with 187 individuals: family members (e.g., parents, siblings) of children with a disability, individuals with a disability, family of children without a disability, service providers, and administrators. Data were collected in urban and rural settings to elicit the participants’ understanding of family quality of life. Ten domains of family quality of life were identified and described in terms of sub domains, indicators, and key points raised by participants.
As per the study carried out at the Regional Rehabilitation Center (RRHC), Hinshaw (2005) Sixty percent of families were severely burdened in related to the item “Effect on the physical health of other family members” which included physical/psychological illness and members of the family becoming depressed and weepy Forty Five percent of families felt severely burdened regarding family interaction and had almost ceased to interact with friends and neighbors. Forty percent had their family leisure severely affected. They had stopped normal recreation and had frequently abandoned planned leisure with the affected child using up most of their holiday and spare time. The family routine was felt to be severely affected in thirty five percent of cases, leading to neglect of rest of the family. Only 25% of families felt they were severely burdened financially and 20% had postponed planned activity due to financial constraints.
Upadhyay and Singh (2009) discuses the impact of level of Mental Retardation of children on the perception of psychosocial problems and needs by parents of mentally retarded children in providing care to them. The study was conducted on a purposive sample of 100 parents of mentally retarded children. The result shows that the level of problems faced by the parents of mentally retarded children increases with the level of Mental Retardation of the child.
Fabiano, & Pelham (2002) studied the psychosocial impact on the parents of mentally retarded children. A cross sectional study of 100 parents of mentally retarded children was done. The result shows that the parents have enormous emotional problems and suffer from mental worries because of having mentally retarded child. Family intervention programmes need to be focused on early building and strengthening the natural support systems for the parents.
Bayat, et.al (2011) compared the psychological problems between parents of intellectually disabled children and parents of normal children. For these purpose 100 parents with mentally retarded child were selected and compared with 100 having normal children. The result shows that the parents with intellectually disabled children experienced more psychological problem as compared with those having normal children.
Wodehouse,& McGill (20009) studied the influence of employment on parenting stress among mothers of 5-year-old children with developmental disabilities and the influence of parenting demands (i.e., care giving difficulty and behavior problems) and family support on their work quality and absenteeism from work. No significant associations were found between employment status and parenting demands, family support, or stress for the sample as a whole.
Warfield (2001) examined the influence of employment on parenting stress among mothers of 5-year-old children with developmental disabilities and the influence of parenting demands (i.e., care-giving difficulty and behavior problems) and family support on their work quality and absenteeism from work. No significant associations were found between employment status and parenting demands, family support, or stress for the sample as a whole. Among employed mothers, those who rated their jobs as interesting reported significantly less parenting stress when they experienced low or mean levels of parenting demands. Mothers’ interest in work did not moderate the negative influence of high levels of parenting demands on stress. Parenting demands increased absenteeism but had no effect on work quality.
Einam M, Cuskelly M (2002) reviewed the employment of mothers and fathers of children with Mental Retardation. Opportunities to engage in employment appear to be reduced for mothers of children with Mental Retardation. Data were collected regarding the employment decisions of parents of a young adult with Mental Retardation and contrasted with those of parents whose children were all developing normally. Twenty-five mothers and 12 fathers of a young adult with Mental Retardation were interviewed, as were 25 comparison mothers and 19 comparison fathers. Mothers and fathers of children with Mental Retardation showed different engagement patterns with the paid workforce from comparison parents. Increased attention needs to be given to the employment opportunities of parents of children with Mental Retardation since employment appears to play a protective role for mothers, in particular.
Einam ; Cuskelly (2002) speak about paid employment which is increasingly undertaken by mothers as their children grow. Majority of women are in employment by the time their offspring become adults. Opportunities to engage themselves in employment appear to be reduced for mothers of children with disabilities. Increased attention needs to be given to the employment opportunities of parents of children with disabilities since employment appears to play a protective role for mothers, in particular.
Little, ; Clark (2006), p.21 studied that, a family who has a child with a disability will experience many challenges such as “repeated physical and emotional crises, interactive family issues, ruined schedules, and additional expenses which can create financial burdens for a family”. It may be during these times of physical and emotional stress that parents will take out their frustrations on each other, the other children or even the child with the disability or illness. This can lead to marital problems as well as issues of sibling rivalry, parentification, and social dejection.
Hudson, et.al (2003) studied the negative impact on the parents of the Mentally Retarded children in the form of financial crises. Parents might develop an antagonistic attitude toward their retarded children due to failure in reaching balance in meeting the financial needs of the family in general and specific needs of their retarded children. In the families of Mentally Retarded children problems come in the shape of ‘negative impact on health of caregivers’, ‘social embarrassment of the family members’, ‘relationship problems among the siblings’, etc.
Montes, Halterman (2008) reported that parents of children with Mentally Retardation have significant out – of – pocket expenditures related t their child’s care. This likely places a significant burden on families in the face of additional out – of – pocket expenditures.A cross-sectional survey was conducted by Duvdevany, & Abboud (2003 ) to describe the health of mothers of adults with intellectual disability (ID), and the influence of the mother’s and her adult child’s characteristics on her health. The sample consisted of 108 mothers divided into mid-life and later-life groups. Arthritis was found to influence the physical health of both groups of mothers. Employment was found to influence physical health of the mid-life mothers, while family income was found to influence mental health of the later-life mothers. The characteristics of adults with ID did not influence the mothers’ health significantly. Mothers’ care-giving for their adult children with ID might not be as detrimental to the mid-life mothers’ physical component of health as it might be to the later-life mothers
Hastings (2003) assessed the parental depression using the Beck Depression Inventory (BDI) in 216 families with children with autism and/or intellectual disability (ID), Mothers with children with autism had higher depression scores than mothers of children with ID without autism, who in turn, had higher depression than fathers of children with autism .Forty-five per cent of mothers with children with ID without autism and 50% of mothers with children with autism had elevated depression
The aim of the study by Scharer et al (2009) was to evaluate anxiety, depression, and general psychological symptoms in the mothers of autistic children in comparison with those in the mothers of mentally retarded children. Forty mothers of autistic children and 38 mothers of mentally retarded children were included in the study. Non-depression rates were 27.5% in the mothers of autistic children whereas the rate was 55.3% in the mothers of mentally retarded children. There was no difference regarding anxiety between the two groups. The mothers of autistic children experienced more psychological distress than those of mentally retarded children.
The aims of the study by Riebschleger, et.al (2008) were to describe the change in mental health over time in a group of family caregivers with a child with intellectual disability (ID) and to explore the effect of a home care service on the psychological well-being of the caregiver. The findings of this study accredit the effect of home care services and suggest that home care services are necessary for family caregivers. Thyen et al (2003) sought to determine the independent effect of unmet health needs on family burden, in addition to the effects of functional impairment and parental care load, in children and adolescents with disabilities. It was found that lack of medical services, contributed significantly to family burden. Addressing unmet health needs may alleviate the impact of caring for a child with a disability. Graneheim,; Lundman (2004) reviewed the experiences of parents living with a young person with mental health problems. Qualitative interviews were conducted with 25 parents. He reported that the parents tried to make sense of the illness in their lives by reconstructing their past, present and future experiences. The concept ‘responsibility’ was threaded through the parents’ narratives and is discussed in relation to three key dimensions – more responsibility; casual responsibility; and responsibility for self.
Allik, Larsson, & Smedje, (2006) evaluated the Health-related quality of life in parents of school-age children with Mental Retardation. Parental HRRL was surveyed by the use of the 12 Item Short Form Health Survey (SF-12) which measures physical and mental well-being. The mothers of Mentally Retarded children indicate poorer physical health, and there was a relationship between maternal wellbeing and child behaviour characteristics. Gallagher (2010) reported that the parents of children with mental disabilities registered high depression and anxiety scores and the majority met the criteria for possible clinical depression and anxiety.
Kazak, et.al (2010) studied the current educational models and to find out the feasibility for replication. The choice of model depended on the child’s level of functioning and parental aspirations. About 46.8% preferred home-based instruction, while 25.8% were enrolled in special schools and 19.4% were in inclusive schools. Although children improved with home-based instruction, parents expressed stress. About 73% of the parents were eager to send their children to a suitable school, but dissatisfied with the existing facilities.
Ventegodt, et.al (2005) identified certain factors which affects placement of Mentally Retarded child, which include child – related parameters, family and parental attitudes, the influence of the social environment, and the external assistance provided to the family. The purpose of the study by Rimmerman ; Muraver (2001) was to examine the extent to which 160 mothers who care for an adult child with mental retardation differ in respect to undesired daily life events, instrumental functioning, social support and well-being from a comparably matched group of age peers. Findings indicated that caregivers for adult children with mental retardation reported more undesired daily life events in comparison to the matched group. However, no differences were found in respect to their instrumental functioning, social support and well-being. Mugno, et.al (2007) viewed the impairment of quality of life in parents of children and adolescents with Mental Retardation. They seem to display a higher burden, probably for a combination of environmental and genetic factors.
Schmidt, et.al (2006) assessed the extent of father involvement in the lives of their young children with severe Mentally Retarded, as well as their satisfaction with that involvement. The extent of fathers help was the highest in the areas of playing nurturing, discipline and deciding services. Most mothers were satisfied with the extent of father’s help and this satisfaction was related to indicators of family well being.
Lenhard, et.al (2007) reported that mothers have feelings of guilt for having a child with Mental Retardation and a stronger feeling of being involuntarily segregated in society. On the other head, they more often experience support and respect from outside, particularly through self-support groups. McConkey, et.al (2008) studied the impact on mothers of bringing up a child with Mental Retardation. The mothers are at increased risk of stress, along with poorer health and weakened family relationships.Kaminnnsky & Dewey (2002) studied the relationships between feelings of loneliness, social support and psychosocial adjustment, and the influence of gender and family size on psychological adjustment of siblings of children with Mental Retardation. It was found that large family size appears to facilitate healthy adjustment in siblings of children with Mental Retardation.
Kersh, et.al (.2006) This study examines the contribution of the marital relationship to the well-being of both mothers and fathers of children with developmental disabilities. Parent well-being is conceptualized in terms of mental health, parenting stress and parenting efficacy. These analyses are based on data from 67 families participating in the Early Intervention Collaborative Study, an ongoing longitudinal investigation of the development of children with disabilities and the adaptation of their families. The findings support the importance of the marital relationship to parental well-being and illustrate the value of including fathers in studies of children with developmental disabilities.
Hendriks, et.al (2000) studied that parents of children with Mentally Retarded often experience deleteriously high levels of stress. McGaw et al, ( 2002) conducted a study aimed to see the positive results of ‘group intervention’ to reduce emotional problems of parents of MR children. Group intervention was provided to 12 parents with borderline or mild intellectual disabilities over 14 weeks. ‘Judson Rating Scale and Behaviour Problem Index’ was applied on parents to examine the results after 27 weeks follow-ups. The immediate and long-term benefits of group interactive process have beneficial effect to reduce parental stress.
Study of Gallagher, et.l (2010) reported that the parents of children with mental disabilities frequently report symptoms of depression and anxiety. Hassall, Rose, & McDonald. (2005) investigated the relationships between parental cognitions, child characteristics, family support and parenting stress. The aspects of cognitions studied were: parenting self-esteem (including efficacy and satisfaction) and parental focus of control. The group studied consisted of 46 mothers of children with mental disabilities. The results indicated that most of the variance in parenting stress was explained by parental locus of control, parenting satisfaction and child behaviour difficulties. Whilst there was also a strong correlation between family support and parenting stress, this was mediated by parental locus of control.
Khamis (2009) identified the Predictors of parental stress and psychological distress among parents of children with mental retardation in the United Arab Emirates. He examined the relative contributions of child characteristics, parents’ socio-demographics, and family environment to parental stress and psychological distress. Participants were parents of 225 mentally retarded children, of whom 113 were fathers and 112 were mothers. The results indicate that the age of the child was significantly associated with parents’ feelings of distress and psychiatric symptom status, and parental stress was less when the child was older. Fathers’ work appeared to be a significant predictor of parental stress, indicating that for fathers who were not working the level of stress was higher than fathers who were working. Lower socio-economic level was associated with greater symptom rates of cognitive disturbance, depression, anxiety, and despair among parents. Gupta ; Harpreet (2010) examined the stress among the parents of mentally retarded children. 102 parents formed the sample of the study.30 of them had children without disability. Results show that, most parents of children with mental retardation experience higher mental stress as compared to the physical stress.
Burden among caregivers of children with mental disability was studied by Helena et al (2006). This study determines the pattern of demographic, caregiver and child characteristics that specially predict burden among the primary caregivers of children with intellectual disability in India. 31 families with an intellectually disabled child were assessed. Results predicted a high level of burden among the caregivers. These results reinforce the importance of expressed emotion, perceived prognosis about disability and age of the disabled child in predicting burden among caregivers of children with intellectual disability and thus a focused intervention.
Weiss (2002) assessed the effects of social support and hardiness on the level of stress in mothers of typical children and children with developmental disabilities. One hundred and twenty mothers participated (40 mothers of children with autism, 40 mothers of children with mental retardation, and 40 mothers of typically developing children). Results indicated significant group differences in ratings of depression, anxiety, somatic complaints and burnout. Regression analyses were conducted to determine the best predictors of the dependent measures. Both hardiness and social support were predictive of successful adaptation.
Douma, et.al (2006) studied the types of support required by the parents of Mentally Retarded child needs and whether their needs are met. In a sample of 745 youths (aged 10-24 years) with moderate to borderline ID, 289 parents perceived emotional and / or behavioural problems in their child. Most parents needed some supports, especially friendly information. Parents who perceived both emotional and behavioural problems in their child needed support the most. The need for a friendly ear was met most often, whereas the need for parental counseling was met least often. The parent’s main reasons for not seeking support concerned their evaluation of their child’s problems. Social support is important for health and stress relief, it increases resilience, multiplies joy and softens sorrow. The social support system is as important for maintaining physical health as well as mental health.
Hendriks et al (2000) studied the changes in well-being of parents with a child in a therapeutic toddler class. Parents perceived a positive change in well-being 10 months after their child started visiting the therapeutic toddler class. Mothers as well as fathers said to have gained more insight in their child’s abilities and to feel less that they are all on their own. The impact of the toddler class program on well-being was greater for mothers than for fathers, especially with respect to feeling fit, planning social activities, and having time for their own relaxation. Fathers, however, gained more insight about the abilities of the child than mothers did after ten months.
Ryan & Deci (2001) reported that physicians can provide the necessary support to parents of intellectually disabled children. He stresses the physician’s unwitting participation in abuse and neglect of persons with developmental disabilities. The vast majority of birth parents and foster parents for children with special needs do the best they can in challenging circumstances. Many describe the frustrating circumstance of knowing more than their physicians about their child’s unusual medical conditions. Physicians are therefore well-advised to listen carefully to the reports of observant, caring parents and foster parents, and to give these observations at least as much weight as their own.
De Geeter, et.al (2002) studied the co-operation of parents and professionals. A questionnaire was sent to 723 parents of children with Mental Retardation enquiring about their relationship with the professionals at their child’s school for special education. The results demonstrate that parents regard cooperation in a favorable light.
Hiort et al (2003) sought to determine the independent effect of unmet health needs on family burden, in addition to the effects of functional impairment and parental care load, in children and adolescents with disabilities. It was found that lack of medical services, contributed significantly to family burden. Addressing unmet health needs may alleviate the impact of caring for a child with a disability.
Singh et.al (2008) Studied both positive and negative impact on parents of Mentally Retarded Children so as to help manage this problem in the best possible way. The study was conducted at the outpatient department of P.G.I. Behavioral and Medical Sciences, Raipur, and two special schools of mentally challenged children and it was done by purposive sampling method. Using specially designed semi-structured socio demographic and clinical data sheet, information was gathered about mentally challenged children and their parents. Results of this study show that parents reported more positive impact (55.38%). They had developed more patience, more tolerance, more empathy, more sensitivity, and better relationships among the couple because of having such a child in their family. Reporting of more positive and less negative impact may be due to better coping mechanisms, more awareness and training about the behavioral intervention techniques, various benefits provided by the Government and support by various Non-Governmental Organizations, etc.
Ayeha (2017) stated that There is a perception that people with mental illness are violent, look different from others, can never get better or cannot be productive members of society. These inaccurate and misleading stereotypes impact adversely on people’s struggle to cope with their condition.”Studies show that people with mental illness are much more likely to be a victim than a perpetrator. Media should come forward and be strong partners against this social bias,” she stressed.”Family members, friends and the society in general have a vital role in helping people recover from mental illness. They need positive attitude and acceptance of their conditions.”The illness afflicts 15 to 35 million adults, which is approximately 10 to 20 per cent of the population. Additionally, approximately 20 million children, or over 10 per cent of the population, need attention from mental health practitioners.Dr Mian explained that mental illness refers to a wide range of mental health conditions that affect mood, thinking and behavior.People go through periods when they feel emotions such as stress and grief, but symptoms of mental illnesses last longer than normal and are often not a reaction to daily events. When symptoms become severe enough to interfere with a person’s ability to perform day-to-day chores, they may be considered to have a significant mental illness.She described factors that may lead to depression, anxiety and addictive behaviors, and eating disorders – stressful life situations, use of alcohol or recreational drugs, imbalance of a chemical substance in the brain, and genetic disorder or having a blood relative with a mental illness. Exposure to environmental stressors, inflammatory conditions, toxins, alcohol or drugs while in the womb can sometimes be linked to mental illness.”While not all mental illnesses are preventable, some changes in lifestyle can significantly help. Be an organised person in your routine life, take wise and timely decisions, and take good care of yourself with healthy eating, regular physical activity and sufficient sleep – usually seven to eight hours for adults. Avoid conflicts in personal as well as professional life, try to participate in social activities, and get together with family or friends regularly. Avoid alcohol and drug use,”
One of the studies in Mexico and America was to examine the beliefs of God’s role in Mexico and Mexico’s disabilities (Global and BlackSecip, 2007). The researchers conducted surveys to 160 participants, out of which 82 were Mexican and 78 of whom Mexico was American. He felt that majority of the respondents viewed God as “both rewarding and just” rewarding who take care the disabled people in heaven, and did not believe that God was punished. It is important to consider that in this study the respondents were not parents of disabled children. In this study of the disability culture in the Ghana, Reynolds (2010), five community leaders interviewed the current ideas of the disabled people in this country. Researchers found that, although the respondents have awareness that biological and environmental specifications existed for the disabilities, traditional spiritual specifications were also presented, including the father grandfather who committed something wrong and disability is a curse on their family, any child’s birth can be caused by similar problems after touching any disable person. Studies focus on the concept of community leaders rather than the parents of disable children.
Addressing the culture of the parent’s belief about disabilities and its treatment, Danseco (1997) examined the parents’ beliefs about nature, examined the various types of cultures and causes of disability. The author reviews of the study that Mexican-American parents, Chinese-American parents, Druze parents in Arab community drivers in Israel, Sri Lanka parents in the UK, Jewish and eastern parents in Israel, and American parents, and case studies, ethical Practical studies and experimental studies related to many articles including reports, psychology, special education, medicine and social work. Researchers concluded that the beliefs of parents about the disabilities showed the biological and social cultural perspectives, and these beliefs influenced their decision to intervene for the treatment of conditions. Although parents were able to explain the biological cause of their children’s disabilities, they often associated with “spiritual eyes” or “bad eyes” or with God’s punishment with spiritual or social-cultural beliefs.
Duodji et al. (2011) reported a study of results of five South Asian mothers or children with children living in Ontario, Canada or with backbone or pregnant spinal injury. The researchers tried to find out that the participants knew the disability and recovery. According to their findings, despite knowing the biological illustrations for the conditions of their children, mothers also talked about traditional clarifications, rejecting the “the will of God “, while being disabled. Thank God for taking care of the child with a disability. In addition, participants hoped the future of their children, focused on the education prospects and the “common” life success, especially hoping to walk freely through maintenance. The respondents were in the immigrants from South Asian countries, and they have the potential to develop in a developing country. Thus, their wishes may be affected by rich resources available to them, which were not for those living in developed countries.
Croot et al. (2008). Views of Pakistani parents of disabled children about disability of their children living in UK. Researchers interviewed of 15 parents and one grandfather of disabled children. He felt that all the interviews described traditional beliefs due to disabilities, including the child with a disadvantaged child. Child was tempted by God for their parents’ ability. Parents were chosen by an unknown for a purpose; And the parents were God’s punishment for something in the life of their parents. Although all the informers referred to traditional beliefs, they also gave biological explanations for disabilities and other specifications, which resulted in the behavior of mothers during pregnancy and it was believed that disabilities could be caught from other children.
Morgan and Tan (2011) found parent’s beliefs in their children being disabilities with cerebral disorder in Cambodia. 24 or primary careers were respondents. Out of them, 15 mothers, four fathers, two grandmothers, one was an aunt and two was not relative of disabled children.The researchers found that 10 participants had “no idea as to why their child had a disability” (p. 2116). Eight of the respondents believed the cause to be at least partially biomedical (i.e., vaccinations, the mother’s health and nutrition during pregnancy, or trauma), and eight believed it to be at least partially related to traditional factors (i.e., karma or spiritual forces). Researchers found that 10 participants did not know “why their child was disabled”. Eight respondents believe that at least partially biodiversity (i.e., vaccines or mother’s health and nutrition during pregnancy), and eight is considered least partially related to traditional factors. (i.e., karma or spiritual force).
This research will be the Quantitative research. Researcher will use survey method for data collection. Questionnaire ; interview schedule will use for the data collection tool. Questionnaire for literate parents and interview for illiterate parents. Results will be presented through SPSS and statistical analysis by using the chi-squared test. The sample will consist of 100 parents of mentally retarded children from Multan city.