The purposes of this study were to explore caregiver perceptions of the origin of their children's disabilities, aspirations for their children's future, and the frequency with which they sought health care and rehabilitation services for their children with disabilities. A qualitative descriptive design using face-to-face semi-structured interviews of 13 caregivers of children with disabilities was employed. Caregivers cited biomedical explanations, as well as beliefs in superstitious, traditional, and religious-based causes of disability. Respondents reported limited access to medical care and rehabilitation services. Nevertheless, caregivers have hope for their children's futures. Increased global medical volunteer involvement has the potential to improve access to care and rehabilitation services.
Disabilities are defined differently by different organizations and agencies. The World Health Organization (WHO) describes disability as an interaction between the individual's physical body and the features of the society in which the individual lives (World Health Organization, 2012). The WHO defines disabilities as an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action, while a participation restriction is a problem experienced by an individual in involvement in life situations. In the United States, disability is most commonly defined according to the Americans with Disabilities Act (2008):
(A) a physical or mental impairment that substantially limits one or more major life activities of such individual;
(B) a record of such an impairment; or
(C) being regarded as having such an impairment. (§12102).
In Nicaragua, the Ministry of Health defines it as
a deviation from the biomedical normalcy of the body-mind structure and function as a consequence of an illness, trauma or injury, and which calls for therapeutic or compensatory measures, generally on an individual basis. (IDRM, 2004).
Parental attitudes toward their children with disabilities, the resources they are willing to invest in treatment, training and education of these children, and parental expectations for the future of their children with disabilities are strongly influenced by a variety of factors, including the culture in which they live (Danseco, 1997). Although there has been research on this phenomenon in a number of developing countries, there has been no research to date in Nicaragua looking at parental understanding of the cause of disability or their aspirations for the future of their children with disabilities, despite the fact that as recently as 2008, families with children who had disabilities were keeping these children hidden from the community, providing them with no medical care or education (W. Ashman, personal communication, August 16, 2010). The purpose of this study was to explore Nicaraguan parents' perceptions of disability and their aspirations for the future of their children with disabilities. Secondarily, the research looked at these parents' awareness of resources for their children and their utilization of health care and rehabilitation services.
Background and Significance
Nicaragua is recognized as the poorest country in Central America, with more than 40% of the population living with less than U.S.$1.00 per day and unemployment of more than 46% (CIA, 2009). In 2005 (the most recent data available) approximately 46.2% lived below the poverty line, which has been defined as U.S.$413.53 per year in Nicaragua, and 14.9% below the extreme poverty line, or U.S.$221 per year (World Bank, 2008). Life is difficult for the majority of the Nicaraguans, but for those born with disabilities (motor, sensory, intellectual, or physical), there is either a shortage of or no availability of either educational or therapeutic options that will allow them to integrate into society and be self-sufficient. Consequently, a large percentage of children with special needs never learn skills to enable them to live independently, leaving them dependent on their families for their entire lives. Many of these families are already among the poorest in the country, and the added burden of a child who will never be independent reduces the possibility of the family ever advancing from poverty (Inclusion International, 2004).
Between 10 and 15% of the population of Nicaragua suffers from some form of disability (Mont, 2007, citing INEC, p. 30; Center for International Rehabilitation, 2004), conditions brought on by deficiencies in prenatal care, along with the limited medical resources during and following pregnancy, particularly among the poor. The actual prevalence is likely higher, since these figures reflect reported disabilities and the culture supports concealing these conditions. Even though some governmental programs and private initiatives exist, they only reach a very small part of the population with disabilities. According to a report from the Center for International Rehabilitation (2004), although 12% of children between 0 — 16 years of age have a disability, only 3.5% of children between six and 16 years of age are enrolled in a special education program (p. 5). Furthermore, many children with disabilities live in rural areas in poverty and do not have access to any education. From an employment perspective, although there are laws protecting people with disabilities, Nicaragua has no formal policies or norms that preclude discrimination against this population; thus, although the law mandates one person with disabilities for every 50 employees, the reality is that less than 1% of workers employed by the government have any form of disability (p. 295).
In the context of a multicultural society and the impact of cultural beliefs on family decision-making relative to health care, Groce and Zola (1993) described three key issues: the culturally perceived cause of the disability, which impacts attitudes toward the individual with a disability; expectations for survival of the individual with a disability, which impacts the effort and resources expended to plan for care; and the social roles that are considered appropriate for individuals with disabilities, which also impacts the effort and resources expended to plan for care and future education and training (p. 1049). The authors described a number of culturally perceived causes of disability, including: divine punishment, witchcraft, the "evil eye," family curse, bad deeds in a prior life, and imbalance of certain elements (i.e., hot vs. cold). They connected probability for survival with parental treatment of their children with disabilities, and suggested that neglect of these children or overprotecting them because of an expectation of a shorter life could negatively affect their psychological development. The authors also suggested that, when society has low expectations for individuals with disabilities with respect to work, parents of these children may not be willing to invest resources to educate or train them (p. 1051). In Nicaragua, as recently as 2008, families with children who had disabilities were keeping these children hidden from the community, providing them with no medical care or education (W. Ashman, personal communication, August 16, 2010).
With this backdrop, this research sought to explore parental perceptions of the nature and cause of their children's disabilities and their aspirations for their children's future. Additionally, the author looked at the frequency with which parents sought health care and rehabilitation services for their children with disabilities.
Although research on attitudes toward disability has been conducted in other developing countries, no such research has been reported in Nicaragua, with the exception of one study investigating attitudes toward children with hearing loss in several developing countries, including Nicaragua (Stephens & Stephens, 2000). The researchers sought to examine differences in attitudes of teachers in mainstream schools toward hearing impaired children in their schools. Countries in Western Europe, Asia, the Middle East, Latin America, and Africa were included in the study, with a total of 464 responses, 41 of which were from Nicaragua. Findings did not address the topic of the current research, and, as this study explored teachers' attitudes, no studies were found looking at parental perceptions of disability in Nicaragua.
A study was conducted in Mexico and the United States to examine the beliefs of Mexicans and Mexican-Americans about God's role in disability (Glover & Blankenship, 2007). The researchers administered a survey to 160 participants, 82 of whom were Mexican and 78 of whom were Mexican American. They found that the majority of the respondents viewed God as "both rewarding and just," rewarding those who cared for individuals with disabilities with a place in heaven, and they did not believe that God uses disability to punish (p. 46-47). It is important to consider that the respondents in this study were not parents of children with disabilities.
In her study of disability culture in Ghana, Reynolds (2010) interviewed five community leaders to examine current views of people with disabilities in that country. The researcher found that, although the informants expressed awareness that there were biomedical and environmental explanations for disabilities, traditional spiritual explanations were also offered, including cause by an ancestor who did something wrong and caused a curse on the family, witchcraft, and fear that touching someone with a disability might cause the birth of a child with a similar problem. The study focused on community leaders' perceptions rather than parents of children with disabilities.
Addressing the contribution of culture to parental beliefs about disability and its treatment, Danseco (1997) conducted a review of research from a variety of cultures looking at parents' beliefs about the nature and cause of their children's disabilities. The author reviewed studies spanning Mexican-American parents, Chinese-American parents, Druse parents in Arab communities in Israel, Sri Lankan parents in the United Kingdom, Jewish-Oriental parents in Israel, and American parents, and included case studies, ethnographic reports, quasi-experimental studies and experimental studies from a range of disciplines, including psychology, special education, medicine, and social work. The researcher concluded that parental beliefs about disability reflected biomedical and sociocultural perspectives and these beliefs influenced their decisions about intervention to treat the conditions. Even though parents were able to describe the biomedical cause of their children's disabilities, they also frequently connected the cause to spiritual or socio-cultural beliefs, such as "the evil eye" or punishment from God.
Daudji et al. (2011) reported the results of a study of five South Asian mothers of children with either spinal bifida or congenital spinal cord injury living in Ontario, Canada. The researchers sought to explore how the participants perceive disability and rehabilitation. Among their findings was that, despite knowing the biomedical explanations for their children's conditions, the mothers also spoke of traditional explanations, attributing the disability to "the will of God" and giving thanks to God for choosing them to care for a child with a disability (p 514 — 515). In addition, participants had hope for their children's future, focusing on possibilities of education and the achievement of a "normal" life, specifically hoping for the ability to walk independently through rehabilitation. These respondents were immigrants from South Asian countries to Canada and had the opportunities available to them by virtue of being in a developed country; thus, their aspirations could have been influenced by the rich resources available to them, which were not afforded to those living in developing countries.
Croot et al. (2008) looked at the disability perceptions of Pakistani parents of children with disabilities living in the UK. The researchers interviewed 15 parents and one grandparent of children with disabilities. They found that all interviewees described traditional beliefs around the cause of the disability, including that the child with the disability was a gift from God; the child was a test from God of their ability to parent the child; the parents were chosen by God for a purpose unknown; and the child was a punishment from God for something done in the parent's life. Although all of the informants cited traditional beliefs, they also gave biomedical explanations for the disability as well as other explanations, including that the disability was a result of the mothers' behavior during pregnancy and the belief that the disability could have been caught from other children.
Maloni, et al. (2010) interviewed 11 mothers of children with disabilities in Bangladesh to explore their perceptions of disability and look at how the perceptions impacted the care sought for their children. Disabilities included spinal bifida, cerebral palsy, and non-specifically diagnosed disabilities. The authors found that disability was perceived as limitations in activities, particularly walking and activities of daily living, and the cause was thought to be both traditional and biomedical in nature. Traditional causes included "possession by ghosts or evil spirits" (p. 848), while biomedical causes included those related to labor and delivery problems or maternal behavior during pregnancy (i.e., fall or engaging in manual labor). The researchers concluded that parents' perceptions of disability influenced their care seeking behaviors; however, it appeared that they were most influenced by the attitudes and perceptions of their family members. The study included an exploration of the parents' expectations for the future of their children. The most commonly cited goals for their children were independence in activities of daily living and participation in formal education.
Morgan and Tan (2011) explored the parental beliefs regarding disability causation in their children with cerebral palsy in Cambodia. Twenty-four parents or primary careers were interviewed. Of them, 15 were mothers, four were fathers, two were grandmothers, one was an aunt and two were non-relative careers of children with disabilities. 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).
Although there has been research in some developing countries addressing parental attitudes toward their children's disabilities and their hopes for their children's futures, there has been no such research in Nicaragua. Understanding parents' perceptions of their children's disabilities and their understanding of their children's potential for education and future independence is useful in planning for rehabilitation approaches and educational opportunities for this population.
The study employed a qualitative descriptive design using face-to-face semi-structured interviews. Individual interviews of primary caregivers of children with disabilities were conducted to elicit their perceptions of disability and their aspirations for their children's future.
Human Subjects Protection
The University Institutional Review Board approved all study procedures. Permission to conduct the study was also obtained from the site for participant recruitment, a school for individuals with disabilities in Granada, Nicaragua. Participants provided signed informed consent, including specific consent to tape-record interviews. Interviews were tape-recorded and transcribed verbatim, and tapes were destroyed upon completion of the transcription. Only code numbers identified participants, and no information linking code numbers to participants was maintained.
Sample Selection and Context
The purposeful sample was composed of 11 mothers and two grandmothers of children with disabilities who attended a school for individuals with disabilities in Granada, Nicaragua. Inclusion criteria included parents or grandparents of children with disabilities who were able and willing to participate in a face-to-face interview at the school lasting between 60 and 90 minutes in August or September 2011. The director of Corazon Contento provided information about the study to potential participants whose children attended the school. If the individual indicated interest in volunteering for the study, an appointment was made to meet with the investigator. Fourteen individuals expressed interest in participating in the study; however, one potential participant did not arrive for the interview. Although the researcher hoped to interview fathers and mothers of the children attending the school, only mothers and grandmothers who were the primary caretakers for the children expressed interest in participating in the study.
After obtaining informed consent from participants, the interview was conducted with the assistance of a native Spanish-speaking interpreter. The principle investigator conducted all interviews. These were conducted with each respondent using an interview guide (Appendix). There were four areas of inquiry: 12 items addressed perception of disability; seven addressed health care and rehabilitation services; six addressed parents' aspirations for their children's future; and four items addressed demographics.
The transcribed interview data were entered into a qualitative data analysis software package (NVivo 9.0) for systematic coding. Common themes were identified and recorded in the respondents' own words. The researcher engaged in constant comparison, following grounded theory methods as described by Glaser and Strauss (1999), and made continual adjustments throughout the analysis process. A colleague with qualitative research experience reviewed the data and agreed with the findings, after engaging in an independent coding process.
Thirteen volunteers participated in the interviews. Eleven were mothers of children with disabilities and two were grandmothers, one whose daughter was deaf and mute, and the other whose son was the father, and the mother abandoned the child when he was five months old. The number of children in each family ranged from one to 12, but each informant indicated that only one had a disability. All interviewees were born in Nicaragua. Children ranged in age from two to 23 years old and presented with a variety of disabilities, including cerebral palsy, Down syndrome, autism, and non-specific psychomotor retardation. Some of the study participants were unable to identify the specific disability, but described functional deficits.
Perceptions of Disability
When asked to describe the meaning of "disability," the interviewees' responses corresponded to three main themes: a person with a disability is not as capable as a normal person; a person with a disability is dependent on others; and a person with a disability lacks a limb or mental capacity. A few of the informants were unable to articulate a response and commented instead on how people with disabilities made them feel, as illustrated in the quote below from one of the two grandmothers:
I feel bad for them and I thank the Lord that my kids didn't come out like that, but I feel bad for the moms because it makes it harder to take care of them. When they are little you can control them but once they get older it is a lot harder. Especially single moms. People with disabilities slow things down and make it hard for the people. We should look at it like normal, but I don't see it like that. We can't look down at them; they have their rights too. I feel bad when I see that there are parents that don't do anything so that their kids can grow up and defend themselves. (Interview number 2).
In looking at this response, it is clear that the respondent expressed conflicting feelings regarding individuals with disabilities. While she acknowledged that she "should look at it like normal," she talked about the difficulties caring for these children. At the same time, she asserted "We can't look down at them" and she expected parents to provide the children with some type of support to help them "grow up and defend themselves."
Almost all of the respondents expressed feeling "bad" or "sad" upon learning about the child's disability; however, one mother did not appear to consider her child disabled: "I feel bad about his condition, but nobody actually said he has a disability" (Interview number 12). Several participants spoke about God's role in giving them a child with a disability. "I cried because I never had a child like that before, but said if God wants this for me I'm OK with that" (Interview number 1). "[I felt] bad, but I believe God sent him like this and I have to accept him" (Interview number 11). "It was difficult to accept and I was sad at first, but I prayed to God not to take him away because if He gave him to me this way, I have to love him and care for him" (Interview number 7). Each participant who referred to God made it clear that she accepted that she would love and care for the child because this is what God wanted.
When asked what they believed to be the cause of their children's disability, respondents reported biomedical or religious causes, as well as maternal behaviors or experiences during pregnancy. Some responses included multiple causes at the same time. Reported biomedical causes for disability most commonly related to complications at birth:
It was the doctor's fault because he left the baby inside me for three days after I was supposed to give birth. I was in labor for three days and the baby had no fluid for three days after my bag broke. (Interview number 13).
It was a difficult birth and I was having him at home but had to go to the hospital. At the hospital, when he was born, the doctor said he would have a disability because he didn't have enough oxygen for a long time. (Interview number 1).
Several mothers and the grandmothers reported maternal behaviors or experiences during pregnancy to be the cause of the disability:
When I was pregnant I used to have a lot of arguments and problems with my husband and I believe that was the cause of it. (Interview number 11).
The mom didn't take care of herself when she was pregnant, and I know that the mom didn't go to the doctors while she was pregnant. She partied and wore tight pants when she was pregnant. (Interview number 2).
The doctors told me that it was because of all the stress and fighting. My mom lives in Costa Rica and she came to see me when I was six months pregnant but she was always arguing with me and I was very stressed. The baby's dad kicked me twice in the stomach while I was pregnant; that sent me to the hospital. (Interview number 6).
In addition to the participants' own attitudes toward disability, the researcher explored the participants' perceptions of their families' and neighbors' attitudes. Ten of the informants reported that their family members accepted the children with disabilities and treated them "as normal." Two stated that family members "don't say anything." Only one respondent reported that her sister did not allow her children to play with her child. One mother commented, "My family accepts my son, but sadly my ex-husband thinks that someday he will be normal. I think he refuses to accept my son's disability" (Interview number 8).
When asked about community attitudes, nine of the 13 interviewees indicated that there were instances of discriminatory behavior or comments toward their children. "When I send him to the store, I have to stand at the door to make sure nobody tease [sic] him or bother him. They make fun of him and call him 'loco.' They throw rocks at him" (Interview number 12). "They are always calling him names; when they refer to my baby, they call him the little retard or 'mongolito'" (Interview number 6). "There was a neighbor who would say that I was so old and just having mongoloids. I felt very bad about that" (Interview number 3). These reports suggest that community attitudes are negative toward individuals with disabilities, particularly those with mental disabilities.
In contrast to these responses, some of the participants reported that their neighbors were very accepting, and one indicated that her community was helpful. "To tell you the truth, I work all day and my community helps me to take care of him; they treat him well. If he is wandering, they send him home. If someone is arguing with him, they defend him." (Interview number 11). Such experiences may reflect a protective attitude on the part of community members.
Awareness of Resources
One of the goals of the project was to determine if the parents were aware of resources for their children with disabilities, particularly the Los Pipitos Clinic in Managua. Twelve of the 13 informants were aware of the clinic, but seven had never taken their children to the clinic. For those who did not visit the clinic, reasons cited were transportation costs and a belief that a referral from a physician was necessary. One person indicated that she did not know where the clinic was and, in her words, "I asked but nobody could tell me" (Interview number 11).
Health Care and Rehabilitation Services
Participants were asked about the frequency with which and for what reasons they take their children to a physician or clinic. Of the 13 participants, two did not regularly take the children to a health care provider. One stated that she only took her son to a psychologist, never a physician. Interviewees with older children reported that they took them to health care providers when they were younger, but that now they only go when they are ill. On the other hand, six respondents reported taking the children for regular check-ups and immunizations every two to three months. One stated that she takes her daughter every month.
When asked about rehabilitation, three respondents indicated that their children never received rehabilitation services. Of the remaining participants, four children received rehabilitation services only at Corazon Contento and the rest were treated sporadically in other facilities. One parent responded
He had therapy when he was little, two years old. After, we continued at home until he started to walk. He went to a special school to learn self-care. Then he went to a business school to learn things, but he never learned to speak very well. The only problem is he can't speak very much. He did not have speech therapy. I am the only one who has worked with him by reading to him. He hears perfectly and understands but cannot say what I tell him to say. (Interview number 10).
According to another parent
[He had rehabilitation] when he was little only to help him to walk, but I asked the doctor if they can give therapy now because of problems with his joints, but she told me it might be difficult now because he is older. The only recommendation is to take him to swim but I haven't been able to find a place that will take him and also I've been looking for speech therapy but it is very expensive. (Interview number 13).
Aspirations for the Future
Informants were asked what they see for their children's futures. Themes focused on earning a living, normalcy, and the difficulty they will face without the parents. Several parents commented on their hopes for their children to be able to earn a living. For example, one parent simply said, "I would love him to earn something" (Interview number 1). Another stated, "I want him to learn to read and for him to learn a kind of vocation so he can work" (Interview number 2).
For some parents, the focus was on normalcy. "I want for her to be normal like my other daughter, to go to school and everything, have a normal life" (Interview number 4). "What every parent wants — to grow up, learn to talk, and if God allows him, to live a normal life" (Interview number 7).
Several parents expressed concern about what would happen to their children when the parents were no longer around to take care of them. "Very difficult without me. He will not be able to live like a normal person. What will happen to him when I die? His father is not involved in his life" (Interview number 11). Other informants expressed similar sentiments:
It will be kind of hard. I guess he always will needs [sic] his parents, but I told my daughter that when the time comes for us, she will be the one taking care of him, because he won't be able to be by himself. (Interview number 13). Very hard, because I don't know who is going to take care of him when I'm not around any longer. He has his sister, but since she's a girl, it'll be difficult for her to bathe him. And his father is the only one that works. (Interview number 3).
Participants were asked specifically about whether they thought their children would hold a job, marry, and have children. Only two of the interviewees did not think their children would have a job at all. Although their expectations with respect to the type of job their children would have were not high, many of the respondents indicated that they thought their children would be able to work. "I hope so, maybe not in an office job, but maybe handcrafts or in a bakery" (Interview number 11).
We own a small food business in Rio San Juan, where my son used to work, he is responsible, helpful, hard worker, has discipline, he wakes up very early in the morning, gets ready to work … If we go back to Rio San Juan, he will have a job in our own business. (Interview number 10).
One mother thought her son might work, but added, "[t]he only problem is people will think less of him because he has a disability" (Interview number 13).
While several indicated that they thought their children would marry and even have families of their own, a few did not think it would be possible. "No, maybe not, because he has a disability. He likes girls but I don't think he could get married" (Interview number 1). "I don't think he will marry, because he is not able to communicate. He likes girls, but doesn't go out by himself" (Interview number 10). One parent thought her child might marry if he found a girl with a disability: "I don't think a normal person would marry him. I think he will need to meet a girl who has a disability like him" (Interview number 13). Four parents stated they thought their children would eventually have families of their own. Five participants were unsure if their children would be able to have children; four informants were certain that their children would not have children of their own.
When asked to share their personal wish for their children's future, responses reflected three general themes: independence, people to love them, and happiness. "That someday he could have a wife and kids and be independent; I pray to God a lot so he can be independent and not have trouble." (Interview number 13). "To have a job, be independent, have a family, to get ahead in life." (Interview number 11). "For him to be happy and to learn a specialty and be able to maintain himself and be independent." (Interview number 2). "Happiness, somebody to appreciate her and to give her love and affection." (Interview number 9). One mother wished for "people not to look at him as different, to accept him as he is and not to discriminate against him." (Interview number 10). Two informants could not articulate their wishes and simply responded that they wished "the best" for their children's future.
Several researchers have found that many parents of children with disabilities in developing countries believe that the disabilities are the result of traditional or spiritual causes, rather than biomedical, or they cite a combination of biomedical and traditional causes (Morgan & Tan, 2011; Croot et al., 2008; Daudji et al., 2011). Results of this study support previous research conclusions. Although participants reported biomedical causes for their children's disabilities, a number of informants also cited maternal stress or behaviors during pregnancy (traditional causes) as well as spiritual causes, as reflected in several comments that God gave the children to them this way.
According to Danesco (1997), parental beliefs and perceptions related to disability may influence their decisions regarding the health care and rehabilitation services they seek for their children with disabilities. Her conclusions were that parents who adhere to the biomedical cause theory are more likely to seek the services of medical practitioners; whereas, those who believe that the cause of disability is related to traditional or spiritual phenomena are more likely to seek the services of traditional healers or spiritual practitioners. In this study, regardless of the parents' beliefs about the cause of the disability, none of the participants reported seeking the services of a non-medical provider, such as a traditional healer. Almost all informants sought care for their children at a medical clinic, a hospital, or a rehabilitation center, albeit some sought such care infrequently. Only one parent indicated that she had not taken her son to a physician at all, but instead took him to a psychologist. In contrast to Danesco's findings, these results suggest that beliefs regarding the cause of disability do not influence parents' health care seeking behaviors for their children.
Although there are few resources in Nicaragua for individuals with disabilities, there is a large clinic in Managua run by Los Pipitos, a national parents' organization whose mission is to improve the quality of life for individuals with disabilities and provide support for their parents (Associación de Padres de Familia con Hijos disCapacitados, Los Pipitos, 2007). While all except one of the informants in the study were aware of the Los Pipitos clinic, six of the 13 had never taken their children there and, of those who had, four had only taken them once for tests. The most frequently cited reason for not taking advantage of the free services offered by the clinic was the cost of transportation. This suggests that children with disabilities in Granada might receive more rehabilitation services if there were government or non-governmental organizational support to transport these children to the clinic or to support a branch of the clinic in Granada.
An interesting finding was related to aspirations for the future. Despite the seriousness of some of the children's disabilities and their resulting limitations on the children's functional abilities, most of the informants thought their children would be able to work, marry, and perhaps have children of their own. It is unclear whether these expectations were founded on the parents' wishes or that they were in spite of their understanding of the severity of their children's limitations in light of the culture in which they live. It is clear that this particular subset of parents with children who have disabilities in Nicaragua have high expectations for their children's futures.
Implications for Future Opportunities and Health Care Access
The parents and grandparents who were interviewed for this study expressed great love and concern for their children with disabilities. In light of the poor conditions and lack of resources, they appeared to be limited in their ability to provide increased opportunities for their children to receive medical care and rehabilitation services. Corazon Contento is one small example of what could be done, assuming there is interest on the part of the global medical community. Corazon Contento was established by an American to provide educational opportunity for children with disabilities in Granada. Starting in 2008 by knocking on doors to find children, today, the school has over 60 students enrolled. There is a small, one-room clinic on the site that has been set up for medical care; however, there is no regular medical professional in attendance.
Corazon Contento provides vocational training for the students who attend the school. They learn handcrafts and other skills that can provide some income when they are young adults. With volunteer resources from around the world, it is possible to expand this training to individuals with disabilities living in rural areas of the country without access to the school.
Los Pipitos was established by parents of children with disabilities in Nicaragua in 1987 (Asociación de Padres de Familia con Hijos disCapacitados, Los Pipitos., 2007). It was formed to improve the quality of life for people with disabilities, which it has done by influencing legislation, educating the public, especially parents of children with disabilities about disability, and providing rehabilitation services for individuals with disabilities. The clinic in Managua is an example of what can be done to help these people when there are sufficient resources. The involvement of the global medical community as volunteers might extend these services to other areas of the country where people are unable to take their children to Managua.
This study has several limitations, the most obvious being the small sample size of 13 participants in one city in Nicaragua. Another important limitation is that these informants were all connected to a school for children with disabilities that provides education for the parents about disability and the possibilities of helping their children to reach their potentials. In addition, the school provides low-level occupational training to improve the children's prospects as they reach adulthood. Examples of such training are sewing, jewelry making, and other handicrafts. These opportunities have likely positively influenced the parents' expectations. Along the same lines, these parents have had the benefit of education about disability that is offered by the school, providing them with the biomedical explanation for the conditions that other parents might not have. It would be beneficial to conduct further research to reach parents of children with disabilities in the general Nicaraguan population to determine whether there is a difference in perceptions. The fact that only mothers and grandmothers responded to the recruitment information is a further limitation, since paternal perceptions might shed additional light on cultural factors contributing to the treatment of individuals with disabilities in Nicaragua.
Nicaragua is one of many developing countries with a significant number of individuals with disabilities. It is common in these countries for society to continue to discriminate against this population, for families to be ashamed of them and hide them from the public, and for these individuals to lack access to education and medical care. In this study, findings suggest that parents whose children with disabilities are provided with appropriate education and training, and who receive education about disabilities themselves have better understanding of their children's conditions and potential. Their perceptions of disability are based on biomedical explanations, despite some lingering beliefs in superstitious, traditional, and religious-based causes. Most importantly, these parents have hope for their children's futures. While there are minimal resources available to these parents in Nicaragua, there are opportunities for expanding those resources to Nicaraguans who lack access if the global community increases its volunteer activities in the country.
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Appendix: Interview Guide
- What is your age?
- What is your country of birth?
- How many children do you have?
- How many children have a disability?
Perception of Disability:
- How did you find out about your child's disability?
- When did you find out that your child had a disability? Who informed you?
- Do you know the name of the medical term of what disability your child has?
- How did you feel when you found out that your child had a disability?
- How has your parenting role changed since your child came into your life?
- How does religion impact how you feel about your child's disability?
- What do you believe caused the disability in your child?
- What does "disability" mean to you?
- How does your community view disability?
- How does your community view your child's disability?
- How does the rest of your family view your child's disability?
- Do you have support from your family or the community?
- Have you taken your child to a doctor? How often?
- If you haven't taken your child to a doctor, what is the main reason? (Cost? Transportation? Ability to take time off work?)
- Has your child received rehabilitation services?
- What treatments (medical or non-medical) have you used to treat your child?
- Do you know that Los Pipitos has a clinic in Managua that serves individuals with disabilities?
- Have you ever gone to the Los Pipitos clinic?
- For what reasons do you take your child to a clinic?
- What do you see for your child's future?
- Do you see your child having a job?
- Do you see your child marrying?
- Do you see your child having a family?
- What do you think will bring your child happiness as an adult?
- What do you wish for your child?