|Home > RNJ > 2009 > July/August > Perceived Support Among Iranian Mothers of Children with Learning Disability|
Perceived Support Among Iranian Mothers of Children with Learning Disability
This qualitative phenomenological study explores the lived experiences of perceived support by Iranian mothers who have children with learning disability. Twelve open interviews with six mothers of learning-disabled children (7–12 years of age) were audiotape-recorded with participants’ consent. The interviews were transcribed and data were analyzed using Van Manen methodology. Two major themes emerged from 138 thematic sentences. The mothers’ experiences could be interpreted as a sense of being in the light or being in the shade of support, with variations for different participants. The results indicate a need for more specialized and individually adjusted support for mothers in Iran.
Between 15% and 20% of children and adolescents in the United States live with a chronic physical, developmental, behavioral, or emotional condition (Newacheck et al., 1998). Children with chronic health conditions are often referred to as “children with special health care needs” and are at much higher risk for disruptions to social and emotional development, including family and peer relationships (Miller, Recsky, & Armstrong, 2004).
Studies indicate that parents of children with chronic-condition disabilities experience a higher level of stress than parents of children without disabilities, and they also are prone to an increased risk of reduced well-being (Hatice & Dokuz, 2006; Lam & Mackenzie, 2002; Ong, Chandran, & Peng, 2005; Roach et al., 1999; Sisk, 2000). Mothers who have children with a special need such as learning disability (LD) require support, which has been described as a multidimensional concept including affective, cognitive, and functional behavior, and includes informative, practical, social, and emotional support. Emerson (2003) wrote that social support is positively related to overall improved well-being. Studies about the experience of perceived support by mothers who have children with LD are scarce and are needed to further develop support strategies. Parents of children with disabilities must raise their children within the context of powerful societal discourse that devalues adults with disabilities and, therefore, holds low expectations for the ultimate “success” of parenting children with disabilities (McKeever & Miller, 2004). According to most mothers, healthcare workers do not furnish adequate amounts of information about LD and rarely distribute enough printed materials or make referrals to parent support groups (Poehlmann, Clements, Abbeduto, & Farsad, 2005; Skotko & Bedia, 2005).
Support for families who have preschool- and school-age children with LD is limited in Iran and Iranian mothers must find sources of support to help their children. There are no school nurses in schools with special-needs children, and resources and services provided to children and mothers by social services are insufficient. Consequently, studies that focus on long-term outcomes and identify required adjustments are needed. Within Iranian society, parents’ roles are defined in such a way that mothers are presumed to be the caregivers, and fathers are often limited to economic responsibility. Healthcare professionals must provide assistance on topics such as basic care requirements and helping families, especially mothers, make suitable arrangements for their children. But these professionals need to have a solid understanding of the lived experience of these mothers to support them. Most studies examining the support for parents of children with LD are quantitative (Emerson, 2003; Norah, Daya, AlegrÄ±, & Sribneyb, 2006), and only a limited number have been conducted using a phenomenological approach. Conducting such a study was of paramount importance to gain enhanced insight into the support phenomenon and give mothers the opportunity to describe their support experiences and present their stories. Furthermore, no studies were found that addressed the following questions: How is the concept of support perceived by mothers who have a child with LD? What comes to mind when mothers hear the phrase “received/perceived support”? What are the mothers’ perceptions of support? What resources are helpful for mothers? Applying a phenomenographic approach, this study was conducted to explore and describe mothers’ perception of support in Iran. This was imperative because no studies of Iranian mothers with children with LD had been conducted. Cultural and social circumstances were bound to influence the study’s outcomes, compared to previous studies conducted in a Western cultural context.
An exploratory inductive design was chosen because research on this topic was lacking. The methodology used was inspired by Van Manen (1990) phenomenological approaches, and previously has been described (Hall, 2000).
A convenience sample of six mothers was interviewed twice. These mothers, who were age 28–42 years (mean = 38), were homemakers. All were married and lived with their husbands, had one or two children without LD, and had one child with LD. Two mothers had one disabled child and no other children. The children with LD were between 7 and 12 years of age (mean = 9). Data were collected from mothers whose children were educated in a special-needs school. All mothers who were contacted agreed to participate. Interviews, ranging in length from 90 to 180 minutes, took place in participants’ homes or at their child’s school.
To provide autonomy, all potential participants were informed that participation was voluntary (Beauchamp & Childress, 2001). All participants were given oral and written information about the study and asked to sign a written informed consent form stating that they agreed to be interviewed and that their words would be audiotaped and transcribed by a researcher for analysis. Mothers could terminate their participation at will. Confidentiality was assured, which meant that only the researcher would know the identities of participants on the tapes, reports, or descriptions (Holloway & Wheeler, 1995).
Each participant was assigned a numeric code. The researcher served as the contact person (by means of telephone) so the mothers could contact them with new ideas or to terminate their participation. This study was approved by the Ethics Committee for Medical Sciences Research at Tarbiat Modares University in Tehran, Iran.
Each interview was tape-recorded and repeatedly listened to, transcribed verbatim, and analyzed. Analysis followed the process suggested by Van Manen (1990).
The first step—taking a holistic approach to data—was to determine overall and fundamental meanings of the support. Each interview was condensed into a short description of how mothers received and perceived support in this chronic situation.
In the second step—hermeneutic reflection (Van Manen, 2001)—the selective approach was used to isolate thematic statements. The selective approach was accomplished by highlighting phrases and quotes that stood out and seemed to expose themes related to the experience of mothering. The question asked in this approach was “What does this sentence/meaning unit reveal about the phenomenon, being a mother, in this situation?”
The third step required the researcher to interpret each sentence or meaning unit in a way that was pertinent to nursing. The question was “What does this sentence/meaning unit reveal of the nature of the support phenomenon, in this situation seen from a nursing perspective?”
The last step was to create mindful and sensitive phenomenological text that could be useful to family care nurses (Van Manen, 1990). In this phase, the focus was on highlighting data identified during the selective approach. These phrases and quotes were read, reread, combined, reduced, written, and rewritten until a satisfying basic structure or essence of what it was like to be a “supported mother” in this chronic situation was identified. This basic structure was then grouped into themes and subthemes. Later, meaning units and a detailed approach were considered (Van Manen, 1990).
Credibility assumes that researchers have made efforts to establish confidence in data interpretation in terms of accuracy (Polit & Beck, 2006). To ensure credibility, we presented our preliminary findings to research colleagues at a seminar to achieve collaborative analysis. Transferability refers to external validity. According to Polit and Beck (2006), it rests with research colleagues and expert nurses to judge transferability based on the description of the findings. Dependability is guaranteed when credibility is assured.
We also provided an audit trail and evidence to support interpretations and dependability. Conformability indicates researcher neutrality and links data with sources, related conclusions, and interpretations. To further meet rigorous study criteria, we conducted all activities based on our initial research design. Participants checked transcribed interviews for accuracy. There were no difference between view points of colleagues and participants.
The results of this study are expressed in significant statements about lived experiences of support that were organized into 138 formulated meanings and then grouped into 45 themes from which two major themes emerged.
This research reveals that Iranian mothers who have children with LD receive poor support. These mothers indicated that God provided their main support, while their remaining support was received from husbands, relatives, friends, and others. The mothers’ experience focused on the stress and burden they felt in caring for their children and the lack of support from caregivers. Two other categories emerged from the transcribed text:
1. Receiving attention, with internal variation described as the subcategories feeling relief and being the focus of others’ concern.
2. Being neglected, with internal variation defined as the subcategories receiving insufficient information, feeling uncertain, and feeling misunderstood.
Mothers’ stories and the text as a whole could be described in two major themes: being in the light or being in the shade of support (Table 1).
Being in the Light of Support
For Iranian mothers, being in the light of support meant receiving attention. The feeling of being in communion with God was very important and gave mothers feelings of relief, strength, and confidence. They believed that God would reward them in the afterworld or for their patience in this world. They also believed their contentment with what they had been given in this life would provide a special source of support for them. In fact, mothers generally considered the presence of their child as a special blessing from God. Mothers perceived this phenomenon as “special attention” from God or God’s favor, so they could accept their children and the associated difficulties.
One 30-year-old mother said, “God always wants the best for us. Whatever he wants happens. God is the source of all wisdom. I am hoping for his grace.” A 29-year-old mother said, “I tell myself, ‘God is testing me and will reward me in the other world’…when I think of God, I become very calm and relax.” This study revealed that all of the mothers considered God as a strong source of power and support.
Being the Focus of Others’ Concern
Husbands, relatives, and friends played an important role in mothers’ feelings of harmony. Mothers said that receiving attention resulted in feeling relief. These feelings of relief emerged when others took responsibility for emotional, social, or practical support. A 41-year-old mother said, “When my husband understands me, this helps me to calm down. I become happy and enjoy my life more…support of my husband helps me to take care of the child and use effective coping strategies and increase my life satisfaction.” A 32-year-old mother said, “My son is liked by my family and my husband’s family; they say he is a blessing in our life. Their attitudes have a positive effect on my morale.”
Being in the Shade of Support
For the mothers in this study, being in the shade of support meant being neglected. Feeling neglected included the experience of receiving insufficient information. This especially was expressed in relation to perceived support during the initial phase of accepting their situation. Mothers pointed to a lack of support from the healthcare system and staff at the child’s school; they felt they had received little or no information about their disabled children, the hereditary aspects of LD, toilet training, how to take care of their child and manage his or her problems, and identifying future employment opportunities.
Lack of information forced mothers to search for information from other sources. This created frustration, which in turn led to feelings of irritation, abandonment, and neglect. One mother said, “I have so little knowledge on the subject, that’s why I want to have some information about what I should do and how I can handle our child. I need to know about how to manage my own situation and that of my child, but nobody (healthcare providers and staff at the school) gives me the 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 I am doing. Governmental sources of support for us are both limited and uncertain…we are alone and helpless.”
The majority of participants dedicated themselves to their children. One stated, “My child’s health is more important than my own. I see my health as being totally dependant upon that of [my child’s] health, and that is how I calm myself down. I even miss out on my own rest periods in order to look after him.”
Most participants said they have no plans for their own lives and they only think about dedicating their future to their children. One mother said, “My life is very routine, daily chores. I am often at home, no plans, no entertainment, my days are repetitious. I don’t do anything for my own well-being.”
Feeling neglected also included stories about feeling misunderstood. Mothers felt their situation was misunderstood by those close to them (e.g., relatives, friends). Being misunderstood created feelings of disappointment, irritation, and isolation. Mothers said, “Others use hurtful words and look upon us with pity,” or “Horrible words of friends and relatives break my heart and infuriate me. We have problems with family, relatives, and society. They feel a pity for us, their words hurt me a lot.” Another mother said, “I make such an effort for my son to speak a word. It has been so hard, for 10 years, this is a lifetime. 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 is stabbing me in my heart.” Another respondent, while crying, said, “I am very sensitive toward others’ behavior and comments directed at 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 social friends or relationships.”
Being surrounded by darkness made the mothers feel unprepared for what the future would bring. Anxieties relating to the future for children with LD involved concerns about both short- and long-term issues. Immediate worries included placement in school and health issues. Looking further ahead, mothers were most concerned about their child’s ability to perform self-care and issues such as marriage, occupation, independence, self-control, and provision of care after a mother’s death. One participant said, “I am anxious that I may still have to take him along with me everywhere even when I am old. 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.” Said another mother, “I worry about my child’s future. Could he take care of himself, say when he is 20 years old or more? I take care of him now, do everything for him, but I’m not sure about the future. I feel a sense of hopelessness.”
The results indicate that perceived support by Iranian mothers who have children with LD has been insufficient. Two main themes emerged from the narrations: being in the light and being in the shade of support. Norah (2006) described the importance of social cohesion, social support, and emotional support, not only upon acceptance of disability, but also throughout life as necessary.
For mothers who perceived themselves as being in the shade, formal support from professional caregivers and staff at school and the informal support from husbands, relatives, and friends was sparse and the support they had received was inadequate. Caregivers can become emotionally involved in their child’s disability to the point at which they enter a process of grief and become preoccupied with adapting to the situation and controlling their feelings. Some parents of children with LD became closer and more unified as they transitioned into adapting to their child’s disability (which was a source of support for mothers), while others became more distant from each other (which had a negative impact on mothers). The transition to adapting to the situation appears to influence mothers’ need for support.
Hatice (2006) reported that some families with children with Down syndrome are in close contact with relatives such as grandparents. Having a large or extended family can be a benefit in some cases because family members may provide economic, social, and emotional support to each other. However, in our study most relatives did not provide information or understanding to the Iranian mothers. Hatice (2006) also reported that relatives require information to be supportive. This confirms the study’s findings; consequently, healthcare professionals must not only address the needs of the parents, but also needs of key members of the extended family.
One of the most important sources of strength identified in our study was support from “God” and “prayer,” especially when mothers viewed their child as a “life blessing.” However, support from God was not highlighted in previous studies as beneficial for mothers of children with Down syndrome (Hatice, 2006).
Spirituality has been recognized as positive for health promotion and improved quality of life regardless of perceived life threat (Laubmeier, Zakowski, & Bair, 2004). Stainton and Besser (1998) wrote that the positive effects of having a child with intellectual disabilities in a family include increased spirituality and expanded personal and social networks and community involvement. But there also is an urgent need for informative, practical, social, and emotional support for mothers. In contrast, Hastings and colleagues (2002) wrote that maternal perception of a child as a source of personal growth and maturity was positively associated with the usefulness of perceived support from family and friends and the demand that caregiving put upon mothers. Mallow and Bechtel (1999) reported that families with children with disabilities did not have access to sufficient health and support services—a finding that is replicated in our study.
In the Iranian culture, parents believe that their baby is “a beautiful blessing and a gift” and that God supports new parents psychologically, emotionally, and economically. Parents of a child with LD believe they are likely to enjoy significantly higher levels of God’s attention than parents of children without disabilities. In the Iranian culture, there is a belief that one of God’s most important tests for parents is illness or any disability of a child: These beliefs help mothers accept their child with LD. Most Iranian mothers perceive their child with LD as distinct and special, so they often refer to their child as “a part of themselves.” These mothers devote a great deal of their time, physical and psychological energy, and patience to taking care of and training their child in day-to-day life skills. This result is similar to earlier findings, which indicate strong pressures on mothers of children with disabilities to conform to a traditional philosophy of care in which mothers devote themselves selflessly to the welfare of their children (McKeever & Miller, 2004).
Mothers in our study believed it was God’s wish to test them. Consequently, in Iranian culture, religious beliefs facilitate acceptance of the process of living with a child with disability, and this heightens spirituality. In contrast, in studies of family experience in Western culture, there is no reference to spiritual support and most emphasis is placed on social and family support (Hockenberry & Winkelstein, 2005; Skok, Harvey, & Reddihough, 2006). However, other studies (Laubmeier et al., 2004; Ostermann, Bussing, & Matthiessen, 2004) have indicated that spirituality can diminish depression, anxiety, and feelings of helplessness and can promote better mental health.
In Western societies, “spirituality” is part of the social support that is provided for those who have children with special needs; consequently, education addresses needs of mothers and families (Speraw, 2006). In contrast, within Iranian society, spirituality is an individual endeavor. Every person in Iran, depending on his or her personal and social needs, searches for spirituality, reaches out for the main source of support (God), and adapts to their personal situation to protect their overall well-being.
In this study, however, spiritual support did not appear to be accompanied by support from husbands, relatives, friends, health workers, or staff at the child’s school, leading to a sense of hopelessness. This resulted in negative feelings and behavior, self-neglect, uncertainty about the future, chronic sadness, and feeling burned out. Iranian mothers did not have a support system in their lives and were burdened with pressure.
Because of the study’s qualitative nature, the findings should not be generalized to apply to all mothers who have children with LD. There is little understanding of how spirituality influences the lived experience or faith for mothers who care for their children with disabilities. Consequently, it is necessary to conduct further research on the subject. Also, further studies on the effects of spirituality on emotional health within Iranian culture are needed to enhance the understanding of parental experiences in these situations. This study also could be conducted in the same population with other family members such as fathers or siblings with the other qualitative methods. The qualitative design limits generalizability; however, these findings should be considered when working with mothers and their children.
The study’s findings can serve as an important tool for developing support strategies for mothers of children with LD. Nurses working in schools, health clinics, homes, and hospitals can use these results to develop a holistic nursing care plan. By identifying factors that influence mothers’ experience of support as they care for their children with LD, institutional and no institutional healthcare services can improve the organization of the entire healthcare process and develop mother-focused support programs. These findings also could be used to train nurses and other healthcare employees who may work with mothers who have special-needs children. Iranian nurses can play a key role in advocating for developing research programs in their society and evidence-based services to enhance the lived experience of parents of children with LD. In addition, nurses can form rehabilitation teams and coordinate rehabilitation programs for mothers with disabled children.
Nurses and other healthcare professionals must take into account the experiences of Iranian mothers as they design rehabilitation programs in both Western and Eastern societies. This knowledge also may be applied when providing support for Middle-Eastern immigrants living in the United States or other Western countries who may have similar issues. Cultural diversity is an important factor for nurses to consider in any country because the concept of nursing as a profession is not limited to one culture or one country. Furthermore, these study results can be used when designing educational packages for mothers who have children with LD.
We thank Miss Massnavi, administrator of Mehr Pakan Exceptional School, and Miss Ghazi, administrator of Exceptional Organization. The authors also are grateful to the mothers who participated in the study.
About the Authors
Sima Mohammad Khan Kermanshahi, PhD RN, is an assistant professor of nursing at Tarbiat Modares University in Tehran, Iran.
Zohreh Vanaki, PhD RN, is an associate professor of nursing at Tarbiat Modares University in Tehran, Iran. Address correspondence to Tarbiat Modares University, Nursing Department, Faculty of Medical Sciences, Tehran, Islamic Republic of Iran or email@example.com.
Fazlollah Ahmadi, PhD RN, is an associate professor of nursing at Tarbiat Modares University in Tehran, Iran.
Parviz Azadfalah, PhD, is an associate professor of psychology at Tarbiat Modares University in Tehran, Iran.
Beauchamp, T. L., & Childress, J. F. (2001). Principles of biomedical ethics. New York: Oxford University Press.
Emerson, E. (2003). Mothers of children and adolescents with intellectual disability: Social and economic situation, mental health status, and the self-assessed social and psychological impact of the child’s difficulties. Journal of Intellectual Disability Research, 47(4), 385–399.
Hall, E. O. (2000). Phenomenological methodologies in the service of health. In B. Fridlund & C. Hilding (Eds.), Qualitative Research Methods in the Service of Health (pp. 26–46). Lund, Sweden: Studentlitteratur AB.
Hastings, R. P., Allen, R., Mcdermott, K., & Still, D. (2002). Factors related to positive perceptions in parents of children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 15, 269–275.
Hatice,Y. S., & Dokuz, E. (2006). Experiences of mothers of children with Down syndrome. Pediatric Nursing, 8(4), 29–35.
Hockenberry, M. L., & Winkelstein, W. (2005). Wong’s essential of pediatric nursing (7th ed.). Philadelphia: Elsevier Mosby.
Holloway, I., & Wheeler, S. (1995). Ethical issues in qualitative nursing research. Nursing Ethics, 2(3), 223–232.
Lam, L. W., & Mackenzie, A. E. (2002). Coping with a child with Down syndrome: The experiences of mothers in Hong Kong. Qualitative Health Research, 12(2), 223–237.
Laubmeier, K. K., Zakowski, S. G., & Bair, J. P. (2004). The role of spirituality in the psychological adjustment to cancer: A test of the transactional model of stress and coping. International Journal of Behavioral Medicine, 11(1), 48–55.
Mallow, G. E., & Bechtel, G. A. (1999). Chronic sorrow: The experience of parents with children who are developmentally disabled. Journal of Psychosocial Nursing, 37(7), 31–35.
McKeever, P., & Miller, K. L. (2004). Mothering children who have disabilities: A Bourdieusian interpretation of maternal practices. Social Science & Medicine, 59, 1177–1191.
Miller, A. R., Recsky, M. A., & Armstrong, R. W. (2004). Responding to the needs of children with chronic health conditions in an era of health services reform. Commentaire. Journal of Ayub Medical College, Abbottabad, 171(11), 1366–1367.
Newacheck, P. W., Strickland, B., Shonkoff, J. P., Perrin, J. M., McPherson, M., McManus, M., et al. (1998). An epidemiologic profile of children with special health care needs. Pediatrics, 102(1 Pt 1), 137–140.
Norah, E., Daya, M., AlegrÄ±, M., & Sribneyb, W. (2007). Social cohesion, social support, and health among Latinos in the United States. Social Science & Medicine, 64(2), 477–495.
Ong, L., Chandran, V., & Peng, R. (2005). Stress experienced by mothers of Malaysian children with mental retardation. Journal of Intellectual Disability Research, 49(9), 657–666.
Ostermann, T., Bussing, A., & Matthiessen, P. F. (2004). Pilot study for the development of a questionnaire for the measuring of the patients’ attitude towards spirituality and religiosity and their coping with disease. Forsch Komplementarmed Klass Naturheilkd, 11(6), 346–353.
Poehlmann, J., Clements, M., Abbeduto, L., & Farsad, V. (2005). Family experiences associated with a child’s diagnosis of fragile X or Down syndrome: Evidence for disruption and resilience. Mental Retardation, 43(4), 255–267.
Polit, D., & Beck, C. T. (2006). Essentials of nursing research (4th ed.). Philadelphia: Lippincott Company.
Roach, M. A., Orsmond, G. I., & Barratt, M. S. (1999). Mothers and fathers of children with Down syndrome: Parental stress and involvement in childcare. American Journal on Mental Retardation, 104(5), 423–436.
Sisk, R. J. (2000). Caregiver burden and health promotion. International Journal of Nursing Studies, 37(1), 37–43.
Skok, A., Harvey, D., & Reddihough, D. (2006). Perceived stress, perceived social support, and wellbeing among mothers of school-aged children with cerebral palsy. Journal of Intellectual & Developmental Disability, 31(1), 53–57.
Skotko, B., & Bedia, R. C. (2005). Postnatal support for mothers of children with Down syndrome. Mental Retardation, 43(3), 196–212.
Speraw, S. (2006). Spiritual experiences of parents and caregivers who have children with disabilities or special needs. Issues in Mental Health Nursing, 27(2), 213–230.
Stainton, T., & Besser, H. (1998). The positive impact of children with an intellectual disability on the family. Journal of Intellectual and Developmental Disability, 23, 57–70.
Van Manen, M. (1990). Researching lived experiences. Human science for an action sensitive pedagogy. New York: State University of New York Press.
Van Manen, M. (2001). Researching lived experience. Human science for an action sensitive pedagogy (2nd ed.). Ontario, Canada: Althouse Press.