Neinstein et al. (2008) defined the term special children as those “who have or at increased risk for chronic physical, developmental, behavioral or emotional condition and who also require health and related services of a type or amount beyond that required by children generally” (p. 1057). In the US, 54 million are disabled or 19% of the total population. Among children between five and 17 years of age, only 5% had disabilities (American Community Survey, 2008). The concern of this study is how parents perceive the presence of a child with disabilities in the family.
In affected families, the responsibilities and needs in the family significant increase manifold. The manner in which parents deal with the child’s disability warrants significant attention in research since they are very vulnerable to stress. A better comprehension of the proposed study will require understanding of two salient terms, stress and coping. Stress, by definition is a threat or concern that is either real or perceived from the outside world affecting the parent when the demand exceeds the available resources. The response of the individual towards stress influences the individual as well as the environment (Levine, 2005; Russell, 2007). The stress models of Lazarus and Folkman described coping as the skills, resources, and experiences of an individual in managing both internal and external demands of stressful instances (Knussen & Sloper, 1992).
In light of published research on this subject matter, distress is higher among 70% and 40% of mothers and fathers, respectively. Furthermore, both parental distress and family functioning affect children in various ways cognitively, behaviorally, and socially. When parents learn their child is physically or mentally disabled, their lives will change considerably because it will be filled with strong emotions, complicated decisions, and relationships established with a number of specialists and professionals. At first, parents would feel alone and isolate themselves socially. They may not also have the knowledge to search for support, understanding, and assistance (Mc Gill, 2003). Consequently, family members more often view experiencing marital discord, social isolation and depression. Some parents suffer feelings of disbelief, deep sadness, self-blame, guilt while others feel helpless, inadequate, angry, or shocked. It is demonstrated in studies that the effect of the disability is endured by the family as a unit.
Evaluating the perceptions of parents will provide an opportunity in better understanding how families regard the stress brought about by the presence of a disabled child in the family. The study will be proposed by keeping in mind the fact that the number of children with disabilitiesis increasing worldwide. In helping society become more aware of both physical and mental disabilities, its various components should jointly cooperate after diagnosis of the child’s disability then foster acceptance of the situation in the family. More and more families confront unique stressors and effective methods of coping should be taught. As caregivers, parents should first pinpoint the problem, assess the situation, and manage it in a manner in which the disabled child is well adjusted in the family and ultimately society so his or her skills will be optimally used.
Statement of the Problem
In its attempt to address issues relating to understanding family processes, the objectives of the study will focus on investigating the perceptionsof parents on the child with disabilities and documenting the various experiences of the parents as they encounter stressful events in providing for the needs of their special children. The purpose of this study is to gain knowledge about the history of the family and the parents’ experience immediately after the diagnosis of her child’s disability. Specifically, this study will provide answers to the subsequent objectives:
Profile the families with special children in terms of:
type of disability of child;
number of children;
occupation of parents; and
gross monthly income of the family
2. Document the initial reactions when the parents discovered their children’s disabilities
3. Determine the attitude of the parents toward their child with disability
4. Ascertain the ways of coping among the parentsof special children
Significance of the Study
The principal aim of the study is determine the perceptions of the parents whose child is either physically or mentally disabled. Results of the study will be beneficial to the following:
Family members. Parenting a special child is a hard task that may lead to a lot of stress on the part of the parent especially the mother. Successful coping is vital, and one way of coping includes getting information from professionals, other parents, and written resources in order to learn about child’s disability, how to manage their behavior and needs, and how to find resources that may benefit the child. This study will better equip family members in better coping with the demands of having a special child.
Academe. The findings of the study may also serve as additional research literature in the study of stress. Students would also become aware of the condition of children with disabilities and their mothers. With this information, appropriate intervention will be administered.
Special education teachers. Special educators are aware of the importance of working with the families of special children and try very hard to make the lives of their students’ parents easier. It is difficult for special educators to design educational goals for students with disabilities that are realistic to the family. It is difficult because special educators have little knowledge of the family’s experience on which to base decisions. It is difficult to accurately interpret the parent’s experiences or understand the family’s goals for their child because the experience of the family is unknown to special educators.
Parents of children with disabilities. The parents of children with disabilities will be the main beneficiaries from the results of the study. The interventions that will be drafted is hoped to produce positive outcomes leading to healthy and loving families.
Definition of terms
Autism. This term refers to a disability characterized by impaired social interaction, communication and restricted, repetitive behavior.
Cerebral palsy. This term refers to the group of non-progressive, non-contagious conditions that cause physical disability.
Down syndrome. This term refers to the genetic disorder causes by the presence of all or part of an extra chromosome 21.
Gross monthly family income. This variable refers to the monthly income of the family.
Hearing impairment. This term refers to full or partial decrease in the ability to detect or understand sounds.
Learning disability. This term refers to a group of disorders that affect ability to speak, listen, read, write, spell, reason, and organize information.
Mental retardation. This term refers to a generalized disorder, characterized by below average cognitive functioning and deficits.
Occupation. This variable refers to the means of livelihood of the fathers and mothers in the study.
Type of disability. This variable refers to the impairment of the child which could be learning disability, hearing impairment, visual impairment, mental retardation, behavioral problem, autism, speech defect, and cerebral palsy.
According to Hussain and Juyal (2007), the birth of a child considerably affects family dynamics. Parents and other family members first undergo changes in order to adapt to the pressure of having a new member. If the new family member is found to be disabled, family dynamics will be profoundly affected. A disabled child typically is characterized with behavioral extremes, which in most instances shape parent-sibling interactions. Therefore the child requires special care and accommodations. Families of disabled children differ in their social attitude, behavior, and strength of relationship in contrast to families whose children have no physical or mental disability. Family attempts to first build awareness on the problem confronted by the child, acknowledge it, search for its cause, then research further for validity. Though having a disabled child does not necessarily generate crisis in the family, the stigma of the disability imposed by society has an offending effect on the parents and the family as a whole. Usually the reactions are rejection, withdrawal, grief, guilt, blame, denial or acceptance.
Marcelino (2009) wrote that parents undergo five phases when dealing with children with disabilities in the family. The first phase is termed the shock stage which is typically the instantaneous response of a parent after the diagnosis of their child. In this stage, the parent may be numb and unable to incorporate or realize the scale of the event. Moreover, the parent may be disorganized emotionally, confused, paralyzed, doubtful, and irrational. The second is referred to as the reaction phase which ischaracterized by grief, sadness, and anxiety. Parents may sometimes feel helpless, lost, and extremely insecure of themselves. Some would feel that their aspirations for their children have disappeared. Others would resort to self blame claiming the the disability is because of poor child-rearing practices. They may linger in this stage for quite some time and become submissive to their fate. More commonly, this is called “denial phase” since both blaming and anger are usual parental responses. The adaptation phase is the third stage characterized by parents having come to terms with their mourning and grief and becoming hopeful in asking for possible solutions. It also means that the parentsare ready to proceed and amenable to therapy options for the child. Notably, the parent believes that the child’s disability does not pose a major barrier to be overcome but the quality of the child which could either be an asset or liability. In the fourth stage called the orientation phase, parents feel more optimistic. They start to take action by organizing, seeking assistance and information and planning the future of the child. They more comfortably seek the company of support groups in school. This last stage implies that parents are prepared to address the challenges inherent in the child’s disability. Part of the challenges they face is their education.
The Education for All Handicapped Children Act was enacted in 1975 by President Gerald Ford which modified and improved Education for All Handicapped Act of 1974. In the 1974 Act, Title VI was expanded and confirmed by the Elementary and Secondary Education Act. The Education for All Handicapped Children Act is also referred to as Public Law 94-142. The creation of law was an endeavor to provide educational opportunities to children with disabilities not properly educated. PL 94-142 motivated states to generate practices and policies that facilitate students’ needs. To achieve this end, states are required by the Federal government to implement the following which included: 1. Zero Reject and Free and Appropriate Public Education which means that every special child has the right to be given free and appropriate education in public schools; 2. Nondiscriminatory Identification and Evaluation is crucial at this point in time since many special students were not being acknowledged as children having special needs; 3. The objective of the Individualized Education Program is the provision of a specific and individual meaningful education for every student with a disability; 4. Provide students with disabilities a setting with the least restrictive environment as this optimally benefit this group of students; 5. Provide every individual the right to legally challenge disability programs in a due process of law; 6. Parents or significant others are required to participate actively in the child’s educational endeavors as pointed by Slavin (2006 ) and Hunt and Kirk (2005).
Enacted and authorized in 1990 and 1997, respectively, the Individuals with Disabilities Education Act (IDEA) is a federal law aimed at protecting students’ rights particularly those with disabilities by ensuring they are provided with free and appropriate public education (FAPE), despite the type of ability. In addition, IDEA does not only strive to equally grant special children with educational opportunities but also additional services in special education as well as safeguards in the procedure. The services in special education are individualized therefore they meet the needs unique to the child with disabilities and are implemented in an environment considered to be least restrictive. These services include the following: speech, physical or occupational therapy, transition services, small group or individual instructional, teaching or curricular modifications and the like. The provision of these services is guided by an Individualized Education Program (IEP) which is tailor fitted to address the unique needs of individual students. Children, three to 21 years old, who met the criteria for eligibility in one of the 13 qualifying disabilities, and require specialized services due to the disability can avail of the services under IDEA. These disabilities are considered: visual impairment such as blindness, traumatic brain injury, language or speech impairment, learning disabilities, serious emotional disturbance, orthopaedic impairment, multiple disabilities, mental retardation, hearing impairment, deafness, and autism. To qualify for the services, the student must possess the disability adversely affecting school performance and necessitate special education so that the appropriate education will be received. Children qualifying the requirements of IDEA will be given the accommodations and services tailored for their needs. Basically, IDEA states that when a child is suspected to have a disability, he or she is entitled to a comprehensive assessment by a team of experts from various disciplines which is free of charge. If a special education and related services are needed by the child after thorough evaluation, the next step is the implementation of an Individual Education Plan (IEP) with reference to the child’s specific needs according to the multidisciplinary team along with the parents.
Parents should serve as advocates for their child’s well-being so they become more aware of the accommodations and services he or she is needful of. The following are steps parents need to take to be effective advocates: 1. Parents should be armed with understanding regarding the diagnosis of their child, how it could impact or affect his or her educational career and what possible course of action should be done to remedy the situation; 2. They should also need to understand the IEP of their child. If parents have questions, they should not hesitate to ask until the process will be completely clear to them especially how it will be helpful to the child’s education. Parents should not sign the IEP unless they fully understand and consent to its contents; 3. It is also important for parents to have a communication with the child’s teacher as teachers have the same concerns and challenges as parents. Parents should welcome any opportunity to discuss these matters with the child’s teacher; 4. Any concern in terms of the academic performance or behavior of the child should be written. Parents can obtain these pieces of information from the school admin istators, teachers and other professionals; 5. Parents should know their rights; 6. Parents should actively prepare their child’s IEP or Section 504 plan. They can provide suggestions or make their voices heard if they feel that an accommodation, objective or goal is inappropriate; 7.Parents need to carefully keep records which could be evaluations, progress reports, communication between the school and home, or any relevant written documentation. Any letter sent to the school should be photocopied and keep them in a well-organized manner; 8. A healthy working relationship should be maintained between the parents and the school while strongly advocating for the welfare of their child; 9. Any queries or concerns with regard to the child’s progress, IEP or 504 plan should be communicated. Parents should set a meeting with the school to ensure that they are updated and jointly address these concerns; 10. Parents should guide and encourage their child to complete their homework as well as other projects in school.
At present, the trend in mental health research is the equal consideration on the salience of the child and whole family. Likewise, it is widely accepted in research that services should not only be provided on the child, but also the family of the child with disability. Abundant research has demonstrated that parents whose children are disabled are more stressed. However, literature has furthermore shown that stress is not necessarily a predictable outcome among these families (Beresford, 1994). In discussing the topic of stress, it is essential to delineate the term “stress”. Lazarus (1999) as cited in Austin (2004) mentioned that the term has become a buzzword in several areas of research reflecting day-to-day struggles including anxiety, depression, emotional distress and the like. Since the time Selye coined the term, its definition has become the center of debate (Le Fevre, et al. 2003 as cited in Austin, 2004).
Numerous definitions were presented focusing on stressor, response, and mental and physical reactions triggered by the stressor (Lazarus, 1999; Selye, 1993; Le Fevre, et al. 2003 as cited in Austin, 2004). Butler (1993) vividly presented these three definitions. In the first, stress is a result of overwhelming pressure. When the amount of pressure progressively becomes great, there is no doubt that the recipient will inevitably yield and collapse. For the second definition, stress is due to exposure to aversive stimuli which served as the main idea of Selye whose measurement of stress is based on nervous system activity either on the sympathetic adrenal-medullary or pituitary-adrenal-cortical regions. Also in his stress framework is the general adaptation syndrome (GAS) which is composed of three stages- alarm reaction, stage of resistance, and stage of exhaustion. The third definition of stress lends a dynamic nature to stress which reflects the interplay of extrinsic and intrinsic factors. It was likewise maintained that cognitive factors play a significant role in stress. In other words, an individual’s assessment of stress depends on his or her perceptions of demands and resources. If a person views his or her demands to be high and his or her resources are low, then it is very probable that the individual will confront stress. In connection to this, another supporting theory is by French et al. (1974) which is the person-environment fit theory. It states that stress will be encountered if there is a mismatch between demands of the environment and personal attributes. If a person perceives that the task ahead is manageable, that he or she is able to accomplish the task, and is motivated towards its completion, then the person will not experience significant amounts of stress.
The topic of stress is very well-studied and research on this regard has helped advance medicine, sociology, management and psychology (Cummings & Cooper, 1998 as cited in Austin, 2004). In each of these disciplines, stress theories and research methodologies vary significantly sometimes leading to confusion (Le Fevre, Matheny & Kolt, 2003 as cited in Austin, 2004). A key to understanding stress research in all these disciplines is the recipient’s perception while experiencing stress (Goldberger & Breznitz, 1993 as cited in Austin, 2004).
REVIEW OF RELATED LITERATURE AND STUDIES
The study of Margalit, Raviv, and Ankonina (1992) observed that the coping among parents whose children were disabled were more avoidant thereby interrelationships with family members and personal growth is not very much emphasized.
Miller et al. (2002) studied the coping of mothers of physically disabled and non-disabled children. The study revealed that as extent of psychological distress increases, coping tended to be focused on emotions among mothers with special children. On the other hand, problem-focused coping was correlated with a decline in distress. Both of the relationships were significant after each type of stressor in parenting was controlled.
The experiences of Chinese mothers in parenting a child with Down syndrome were described by Lam and Mackenzie (2002) employing a qualitative approaching among 18 respondents. In coping with parenting stress, the mothers sought social support, used self-reliance and avoidance strategies.
In 2004, Virtanen and Moilanen demonstrated that mothers of children with mental disabilities coped actively by focusing on the problem and asking for assistance from significant others and the like compared to the control mothers.
Religion served as a coping strategy among 12 parents whose children had disabilities. Interview excerpts showed various ways religion is utilized in coping such as praying, attending church, and believing certain religious doctrine were identified to be sources of strength and hope for the parents (Bennett, Deluca, & Allen, 2005).
Sari, Baser, and Turan (2006) investigated lived experiences of Turkish families having children with Down syndrome. Analysis was done qualitatively employing interviews. Their research revealed that the presence of a child with Down syndrome affected the families in the following aspects, namely social, physical, economic, and emotional.
In 2005, Hastings and colleagues implied that families with autistic children employed four coping strategies as follows: religious/denial coping, positive coping, problem-focused coping, and active avoidance coping. Further analysis of collected data strengthened the claim of possible gender differences in active avoidance and problem-focused coping. However, no evidence pointed out the type of coping adopted by parents varied across age of the autistic child.
The findings of Gray (2006) showed that the number of parents coping by religion and other emotion-based strategies was higher compared to those relying on the assistance of special education service providers, family support, invidualism, and social withdrawal.
Sen and Yurtserver in 2007 proved that the families they sampled had insufficient knowledge regarding their children’s disability. Mothers were severely sad and claimed that their family relationships, employment, social life, and financial capability were affected significantly with having a child who is disabled.
Among Chinese families, Chui and Chan (2007) found the frequent use of reframing strategies while passive appraisal strategies were used irregularly. It also appeared that the family members employed positive coping mechanisms, which coincided “fatalistic voluntarism”, a unique Chinese stress coping strategy.
This chapter explains the research methodology of the study. First explained is the research design, followed by respondents of the study, research setting, data gathering procedure, research instrument, and statistical treatment.
The chosen approach in the study will be phenomenography (Marton, 1981; Marton, 1986; Marton and Booth, 1997) which is aimed at identifying in a qualitative approach the perceptions of parents towards children with disabilities. While the phenomenon that the individual encountered may be completely unique and multifaceted, some features will be common and this will connect them collectively. While this proposed study will involve only a small sample, the research will be an important case of how phenomenography can be utilized in studying the experiences of parents in extraordinary situations and identify what is common and unique in the experiences.
Respondents of the Study
The sample will consist of 20 mothers in the area. These mothers should be caring for children with disabilities. The reason for the choice of mothers to be key informants is that they play a pivotal role towards children with special needs by being proactively involved in various support groups and point of contact by institutions and agencies. The mothers will be selected in the study if they have complied with the with the inclusion criteria as follows: a resident of the area and must have a child with special needs aged five to 17. To accomplish this, a snowball approach will be carried out. In a snowball sampling, the researcher will be in contact with initial participants generating additional subjects (StatPac, 2007). Sampling of the research subjects will be made possible with the cooperation of the special education programs in the area.
Data Gathering Procedure
Data gathering in phenomenography will be done through interviews which allow participants to freely describe their experiences (Ashworth & Ducas, 2000). In each interview session the following questions will be asked: “How did you feel when you discovered your child has a disability?”, “What are your experiences in parenting a special child?”, “How do you cope with having a child with special needs?” Other guide questions will be tapped to determine the nature and extent of support mothers receive from others either from immediate or extended family members as well as the community the parent lives. Prompts such as, “Can you give an example of that?” and “Can you tell me more about that?” will be used to elicit rich descriptions of their perceptions. The mothers’ own interpretation of any questions dictated the shape, course, and content of the interviews.
Phenomenographic analysis is a holistic process. The critical features of the phenomenon (or phenomena) under investigation are represented as categories of description (Åkerlind, 2002; Ryan, 2000) which cannot be known in advance but emerge from the data. First, the interview notes were reviewed and studied carefully. Afterwhich, the researcher organized them according to the specific problems in the study and from each problem, several themes emerged. Insights and explanations for such results were supplied to provide a better understanding of the responses.
Creswell (1994) said “A qualitative study is defined as an inquiry process of understanding a social or human problem, based on building a complex, holistic picture, formed with words, reporting detailed views of informants, and conducted in a natural setting. Alternatively a quantitative study inquires a human or social problem, based on testing a theory composed of variables, measured with numbers, and analyzed with statistical procedures, in order to determine whether the predictive generalizations of the theory hold true.” In a qualitative design, respondents in the study will be asked to relate their experiences so the phenomenon will be interpreted. The strength of this method lies in its ability to “provide complex textual descriptions of how people experience a given research issue”. Through this method, the human side of a research problem is highlighted which could include emotions, views, opinions, beliefs, and behaviors. An advantage of qualitative research is its use of open-ended questions that provides opportunity for key informants to freely express their responses in their own terms rather than having them encircle from fixed choices as is the case of quantitative research. The use of open-ended questions ensure that the answers have meaning and culturally relevant. Likewise the results are unforeseen by the researcher and provides a richer and explanatory perspective. In qualitative research, collection and analysis of data are done simultaneously and do not proceed in a linear fashion (Merriam, 1998). Methods of analyzing data entailed transcription, coding and categorization of interviews and field notes (Sells & Smith, 1997). The data reduction methods of Miles and Huberman (1994) will be used in the analysis of data which will start with categorizing and pattern matching, displaying data in the form of matrices, and drawing conclusions and verifying. Ryan and Bernard (2000) presented a coding scheme which involved abbreviations, key words, and numbers that mark passages in the data set. Codes that share in relationship and content are combined forming larger clusters or categories. Once coding is applied, concepts begin to emerge which will then be further analyzed in terms of how it is linked to the theoretical framework. Because the study will analyze multiple case studies, within- and cross-case analyses will be carried out (Merriam, 1998) to determine the themes that are common among all the cases considered. In the within-case analysis, each case will be treated as comprehensive case in and of itself. Data will be coded and themes will be identified. Once analysis of each case is completed, a cross-case analysis will be employed to determine the common themes in all the cases.
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