Mental retardation, as defined in the International Classification of Diseases (ICD-10), is significantly below average general intellectual functioning with two standard deviations below the norm, an intelligence quotient below 70 (Berney 2006). Low intelligence is accompanied by impairments in adaptive behavior with an onset in childhood (Wilkinson and Hate 2006). Globally, terms used to describe this condition include intellectual disability, developmental disability, mental handicap and mental retardation (Brown 2005). For the purpose of this paper, the term mental retardation (MR) will be used as this is the terminology commonly used in Iran.

The literature review demonstrates that parents of children with disabilities experience a disproportionately greater level of stress associated with aspects of family functioning as perceived by themselves and their spouses (Davarmanesh 1997; Ong et al. 2005). Child behavior problems affect the caregivers’ psychological well-being, family functioning and self-perception (Davarmanesh 1997; Raina et al. 2005). Mothers report feeling anxious, frightened, guilty, angry, and, in rare cases, suicidal (Poehlmann et al. 2005).

Today, children with MR often remain in the home rather than in institutional settings (Lai and Mackenzie 2002). Within Iranian society, mothers and fathers participate in caring, rearing and educating the normal child/children together. While in a family with a child with MR, mothers are the primary caregivers; the extra burden of caring, rearing and education of the handicapped child falls on them while the fathers focus on the financial matters of the family. Formal educational support and medical care for families who have preschool and school age children with MR is limited and may need to be privately paid; creating increased family stress. Although, all of the families maintained their child with MR at home, there were not any social services to help them. There were no school nurses in the exceptional (special) schools and there were insufficient consultation services for these learning disabled children and their mothers. These mothers’ lived experiences with their children with MR could be enhanced by health professionals and other supportive social systems. Currently, increasing attention has focused on improving families’ abilities to care for their children, assist them with successful problem-solving and acceptance of their situations (Pelchat and Lefebvre 2004).

To develop meaningful interventions for children and their families, it is critical to explore and describe the lived experiences of having a child with MR. Phenomenology, which provides the meanings that these experiences have for the participants, is well suited to this research (Polit and Beck 2006). The study’s purpose was to conduct a preliminary qualitative study to begin to understand the meaning of Iranian mothers’ experiences of having a child with MR.

Method

The sample consisted of six mothers who had a child with MR who attended a school for exceptional children. The mothers’ ages ranged from 28 to 42 years (Mean = 38). All children were boys and ranged in age from 6 to 12 years. (Mean = 9). The mothers were all housewives. They lived with their husbands and had no specific physical illness.

All participants were given oral and written information about the study and questions were clarified. If they agreed to participate, they were asked to sign a written consent form stating that they agreed to be interviewed. Participants were informed the interviews would be audio-taped and transcribed for analysis and that they could terminate their participation at any time. Confidentiality was assured. Only the researcher was aware of the identities of participants and all tapes, transcripts and reports were coded numerically with no identifying descriptors (Holloway and Wheeler 1995). Approval for the study was obtained from the Ethics Committee of Research in Tarbiat Modares University, Tehran, Iran.

Initially data was collected by semi structured interviews. Participants were asked to describe their experiences related to having a child with MR. Participants were given the choice of being interviewed at home or in the school. All interviews were between 60–90 min. The interviews were audio-taped after obtaining consent from the participants. The interviewer immediately transcribed the interviews, and then asked the participants to determine accuracy of the transcriptions. The data was analyzed using Colaizzi’s (1978) procedural steps which ensured exhaustive descriptions of the phenomena, validation of these descriptions and generation of thematic clusters.

Results

The analysis yielded 336 significant statements related to the mothers’ experiences. These were organized into 138 formulated meanings, and then grouped into 37 themes which were categorized into six major themes within the final analysis.

These major themes were: challenging the process of acceptance, painful emotional reactions, inter-relatedness of the mothers’ health and the children’s well being, struggles to deal with oneself or the child, lack of adequate support from the family and others, and anxiety related to the child’s uncertain future.

Challenging the Process of Acceptance

This referred to the mothers’ reaction and emotional state shortly after realizing that their child had MR. Two sub themes presented in the analysis: “denial and inability to accept the child’s disability”, and “acceptance of the child’s situation based on religious beliefs”.

Denial and Inability to Accept the Child’s Disability

Most participants described a phase of denial and inability to accept the child’s situation. Where the child was the first born, these feelings were intensified. Mothers experienced intense emotions and described the significant impact of having a child with MR; “I was shocked, I felt that I couldn’t breathe properly...I didn’t want to accept the situation”.

The stage of acceptance and denial could be long. One mother with a 9 year old son only accepted the child’s situation after 7 years.

Until 2 years ago, and for 7 whole years, I hadn’t accepted my son’s illness. I always was hiding him and whenever asked about him, I used to resort to very short, sharp answers, almost in a way that they don’t ask any more questions.....It is not easy to speak to anyone and say that my child is mentally retarded.

Acceptance of Child’s Situation Based on Religious Beliefs

In the Iranian culture, “childbirth” is considered a gift and blessing for spouses and to their lives. The baby brings a beautiful “blessing and gift”. Problems of the parents’ lives will be easier than before. God will attend to their psychological, emotional and economical aspects of life. The parents of a child with MR are likely to experience significantly higher levels of God’s attention than are parents of a non disabled child. Beliefs within the Iranian culture are that one of God’s most important tests is illness or any disability of a child. If parents are patient, God loves them more and their lives will be more satisfying. These beliefs help parents to accept their child with MR. Some mothers described how their religious beliefs helped them come to terms with the disability of the child.

I submit to God’s wishes. God always knows best and will send good deeds for us. There is always a hidden wisdom and I am always placing my trust in him. I tell myself that he must be testing me here and would be rewarding me in the next life.

For these mothers, a “belief in God and the world after death” helped them to accept anything as related to God’s will. Their belief assisted them to be calm and relaxed.

Painful Emotional Reactions

All mothers identified degrees of painful emotions. These emotions ranged from, feeling burdened and “finding the child a burden”, “being agitated”, to feeling “hopeless and depressed”. Mothers indicated that having a child with MR represents a significant ongoing source of stress for mothers and that the types of stressors change over time. Mothers expressed their painful emotions as:

Having a disabled child is very hard and painful...I feel that most people have a significant view (humiliating) about me and my child, speaking together about us. These behaviors cause that I’m alone... I felt deeply sad and distressed.

The child’s behavioral problems, the mothers’ perceived personal weaknesses and minimal supports were important influences on the mothers’ emotional well-being which affected both family functioning and the mothers’ self-perceptions.

Inter-relatedness of the Mothers’ Health and the Children’s Well Being

Mothers spoke of the sub theme “mother’s stressful life”. Mothers described spending the majority of their time, energy, and patience in the care of their child, “devoting self to the child” as their children could not take care of themselves. The mothers managed their child’s health, emotional and behavioral problems and trained them in daily living skills. Thus these mothers allocated less time for themselves, rested and entertained less than other mothers. The mothers devoted themselves to their children and described a strong link between their own health and tranquility and the care and well being of their child.

I don’t even think of myself, I even miss out on my own rest periods in order to look after him, because I see my health as being totally dependant upon that of his health, I only wish him to be well.

Another participant explained “my son is 9 years old now, but I feel I have endured 90 years of physical and psychological pressures.... Constantly caring for my son makes me exhausted....”. Other aspects of the mothers’ stressful lives were delegating responsibility to other family members and concern with the lack of long term planning for their children’s futures. One mother stated that “I am always responsible for the care of the child and my family expects me too. This is a heavy burden, and I feel that I have responsibility to take care of my son and not his sisters.....”

Struggles to Deal with Oneself or the Child

Data analysis revealed two sub-themes; “lacking knowledge of effective communication” and “how to care for the child”.

Lacking Knowledge of Effective Communication

Some mothers felt overwhelmed and unable to deal with the problems of having a child with MR. In particular, some mothers perceived an inability to communicate effectively with the child and to manage the child especially when the child didn’t listen to the mother.

Mothers described trying to develop effective communication with their disabled children as illustrated by the following quotation, “I tell him not to do something else, he doesn’t listen. I shout at him, he shouts back at me and that is how it all gets out of hand”. Mothers stated that they sometimes resorted to unsatisfactory ways of managing the child, such as physically punishing the child, isolating self and the child. This resulted in ineffective coping strategies and a sense of constant stress.

Mothers were sensitive to reactions to their children’s behavior and the behavior of others towards them and their children. This behavior resulted in self isolation. One mother whilst crying stated:

I am very sensitive to others’ behavior and comments aimed my child. I cannot help it. I always focus on what they do and what they say. Therefore, I always stay at home because people don’t understand our child, and we hardly have any relationships.....therefore my life is very routine, daily chores.

Lacking Knowledge of How to Care for the Child

Mothers perceived that they did not have sufficient knowledge to physically and psychologically care for their children. They described extra care demands resulting from the child’s delayed development and health complications. Most mothers indicated that they had insufficient knowledge to solve their own and their children’s problems. One mother stated: “I am lacking the basic knowledge and that is why I say, at least, they could provide us with some information so that we know how to deal with these children”.

The health care system and school staff provided insufficient support and information to the mothers. Mothers felt that they needed more information to adequately care for their children.

I need to know about management of myself and my child but, nobody gives me more help and support that I expect and they do not have new and up-to-date information about disability for me........I don’t know, what am I doing.

Not knowing what to do, led mothers to be concerned about managing their children’s difficult behavior outside of the home and restricted their social activities. Some situations lead the mothers to further secluding themselves and their children.

One day, we were walking, suddenly; my son sat on the floor and started to cry loudly apparently without any reason. I was so embarrassed at that moment because other passengers started to stare at both of us. So, I prefer to be at home.

Insufficient Support from the Family and Others

Generally, fathers were outside of the home leaving the mothers to care for the children. One mother stated: “My spouse does not play an effective role in care of the child, he works long hours and I have to care for our child. I feel alone. I’m frustrated”. If husbands attempted to understand their wives, listened to their problems or helped them with their house work, the wives perceived them as supportive.

When my husband understands me, this helps me to calm down. I become happy and enjoy my life more.........the support of my husband helps me to take care of the child, use effective coping and increase my life satisfaction.

Mothers described inadequate support from their relatives and friends and described feeling ostracized.

others use a blow with the words, look at us in compassion and chatter about us, or stink words of friends and relatives break my heart and enrage me.....I have a problem with family, relatives and society, they feel pity for me, their sayings hurting my heart a lot (saying this with crying and wailing).

Slights from family members were hurtful to the mother.

It took a lot of trouble for my son to speak a word, so hard; for ten years; this is a life time (saying with stress) ... when he says “hello” to his grandfather, he doesn’t pay any attention to him. This behavior is very painful for me, as though a person had put a sword in my heart.

Some grandparents blamed parents, especially mothers, for having a child with a developmental delay and did not accept their disabled grandchild.

Anxiety Relating to the Child’s Uncertain Future

Mothers were extremely anxious about their children’s uncertain futures, both short term and long-term futures. Immediate worries included, could the mother take care of her child or not? Looking further ahead, mothers’ were concerned about the child’s ability to become independent, have an occupation, get married and obtain self-control. Mothers worried if their child could take care of himself in later years; “I worry about my child’s future. Can he take care of himself, when he is 20 years old or more? I take care of him now, but I’m not sure about his married life and job in the future”. Some mothers even hoped their child would die before they did as they worried about who would care for their child when they and their spouses died. One mother stated:

Sometimes I come across mothers who are very old but still have to take along with them a grown-up adult. Immediately, it reminds me of my own situation and tears come to my eyes. It seems that I am seeing my own future in them.....

Discussion

This study has provided preliminary data on the lived experiences of Iranian women who have a child with MR. The results demonstrate that having a child with MR significantly impacts the mother’s life, relationships between family members and all functions of the family. The mothers in this study perceived they were socially, physically and emotionally affected. Mothers experienced difficult emotions related to the daily care of their children and their concerns about the children’s futures. This concurs with other studies that demonstrate parents of handicapped children experience depression, chronic sorrow, decreased self-esteem, and psychosomatic symptoms (Luoma et al. 2005).

In this study most participants were worried about problems with daily functioning, continued dependency of their children and their children’s future prospects. The mothers felt that they were “walking in the dark” and the ambiguity of the future contributed to their negative feelings.

Similar to previous literature that suggests families of children with developmental delay are often socially isolated, mothers felt alone in dealing with their circumstances (Cunningham 2000). Of note, the mothers in our study also felt isolated within their own families. Despite the fact that it is helpful for mothers to meet other mothers and share similar experiences in dealing with the handicap of their children (Ringsberg and Lepp 2002) the majority of mothers in this study did not experience this support. Educational and social support from school and health care workers and emotional support from spouses, relatives and friends, were inadequate. This increased the mothers’ feelings of isolation and that they were solely responsible for the burden of care. Skok et al. (2006) reported that the informal support of spouses had a more positive role in mediating stress within the mothers than formal social support. Other literature supports a strong correlation between the level of family support and management of parenting stress (Eisenhower et al. 2005; Hassall et al. 2006; Hastings et al. 2006). Based on this and our preliminary findings, we would advocate for supportive services for mothers and families and further research strategies to fully understand mothers’ experiences.

Our study identified spiritual beliefs as a central source of support. Within Iranian culture, religious beliefs can facilitate the child’s acceptance and contribute to the perceptions that living with a disabled child increases one’s spirituality. Mothers relied on these beliefs to cope with their circumstances. Accepting God’s will and their child as a blessing, believing that they should be patient and will be rewarded in another world sustained them. These beliefs were their most important source of comfort and created a positive outlook. However, spiritual support was not accompanied by practical sources of support. Although these mothers accepted their children, they were still unable to solve problems or ensure their children’s futures. This realistic perception of their powerlessness resulted in negative psychological outlooks and emotional states for the majority of the mothers.

The literature suggests that emphasis has been placed on social and family support with scant reference to spiritual support (Hockenberry and Winkelstein 2005; Skok et al. 2006). However, Curlin et al. (2007); Ostermann et al. (2004); Speraw (2006) reported that spirituality diminished depression, anxiety, and helplessness and promoted better mental health. Stainton and Besser (1998) noted parents identified “increased spirituality” as a positive consequence of having a child with intellectual disability. Further studies on the effects of spirituality on emotional health within the Iranian culture will enhance understanding of parental experiences.

This preliminary study suggests that in order to optimally care for their children and manage their circumstances, mothers require specific education on MR, and on strategies to manage difficult behaviors. Pervious studies demonstrate that responsibility for care of the child with MR is shared by both the mother and father (Mc Carthy et al. 2006) but the mothers in our study perceived they were the sole and primary care givers. Health promotion strategies have demonstrated an effect on better quality of life (Tae et al. 2006; Wang 2006).

Within the Iranian culture, professionals are central to the provision of optimal care to the child and can provide essential education for mothers. Our findings suggest that nurses begin to coordinate the care of these mothers and their children and offer interventions to offset the mothers’ educational and support needs (Chaplin 2004; Guest 2006; Mencap 2004). Nurses must learn to work effectively within the multi-professional and multi-sectoral services to overcome barriers to better resources (Hatice and Dokuz 2006; Long et al. 2003; Pierce 2005).

Conclusion

This preliminary study provided rich data on the lived experience of Iranian mothers of children with mental retardation. The findings suggest mothers’ experience significant social, physical, and emotional difficulties. The children face problems within their daily lives and in their futures. Mothers did their best to take care of their children with love and compassion. The mothers emphasized that professional health providers can potentially improve the quality of life for mothers and their children through “caring, support and sharing knowledge” to assist them to become more effective mothers. Iranian nurses can play a key role in advocating for significant research programs for this population, leading to the development of evidence based services that will enhance the lived experiences of parents and children with mental retardation.