Disability and people with disability is a concern to society. Disability can either be physical or mental. This essay shows some of the studies done on children living with disability and the methods used to collect information and study their challenges. The articles review differ in that they use methodologies that show the different challenges faced by children with disability. The literature will constitute a review of 10 scholarly articles that use different approaches to research issues affecting children with mental disability and impact their quality of life. The review will show some of the ways the studies are similar and how they differ in their methods. Each research article reviewed has a different hypothesis that is relevant to how disability in children impact their quality of life and those of caregivers such as parents.
Literature Review
A study by Van Horne et al. (2018) investigated whether there were differences in risk and predictors of maltreatment between children aged between 2 to 10 years with and without specific birth defects. The study adopted a mixed methods research design that integrated quantitative and qualitative methods. Qualitative data was obtained from the Child Protective Service records of the Texas Department of Family and Protective Services (TDFPS) while the quantitative data was derived from a statistical analysis of a sample size of 3,130,324 children born in Texas from 2002 and 2009. They used data from child protective services from 2002 to 2011 with Down syndrome, CL ± P, and spina bifida. The study found that the prevalence of substantiated cases of maltreatment was higher in children with cleft lips than those without. Further, the study found that children with cleft lips and downs syndrome were 34% and 26% more maltreated than children born without any birth defects respectively.
A child needs to feel loved so that they can fit in the society without trouble. Before a child is taught how to fit in the community, as discussed by (Breen and Haring 1992), the child needs to be understood and helped to fit into the society. In their study, Breen and Haring (1992) investigated modalities for social network interventions aimed at enhancing social integration of individuals with varying degrees of disability. The study adopted a quantitative research design where two individuals with a severe and moderate disability that were mainstreamed into the general education class. The study methodology involved a cross sectional investigation that attempted to validate the development of peer support networks within the general education setting and the impact of peer network intervention on the social interactions of students with disabilities and impacts of peer satisfaction, attitude and friendship development following involvement in peer support network. The researchers recruited two groups of non-disabled peers for participation in weekly discussions with an adult integration facilitator to enhance the opportunities for social integration for the two students with disabilities. The results indicated that prior to the intervention, 24% of the peers indicated that the target student was perceived just like anyone else while 29% indicated that the students was fun to hang around with. After the intervention 89% described the relationship with the target students as friends and 11% as best friends. The study results indicated that social network interventions were successful in enhancing the quality and quantity of interactions and the use of the network strategy promoted the development of friendships.
Memisevic and Sinanovic (2013), conducted a study to investigate the relationship between visual-motor integration and executive function in children with disability. The research adopted a quantitative research design that involved the use of data from two schools with children with disability. The population sample studied 90 children between the ages of 7-15. 54 of the children were boys and 34 girls. An IQ test was conducted on the children and 42 had a mild intellectual disability while the rest had a moderate intellectual disability. Those with mild disability scored 50-70 while those with a moderate intellectual disability scored 35-50 on the standardized test. The researchers also used the Acadia test of visual-motor integration. The test measures the ability of children to copy 20 geometrical shapes that gradually progress in difficulty. Executive function of the children’s VMI was measured using the Behavioral Rating Inventory of Executive Function (BRIEF).
The research shows how VMI (visual-motor integration) affect executive functions of the brain. The executive functions include; excellent motor skills, visual perception, and motor coordination. A VMI model consisting of the working memory, monitoring, and visual perception of the child. The research shows how visual-motor integration and executive functions are related. When combined with the research done by Van Horne et al. (2018) it is surmisable that children with mental disabilities are at risk of maltreatment since they do not fit into what is considered normal in the society. For families with children with a mental disability, it becomes an issue of concern when the child can not fit into society. If a child has difficulty controlling essential motor functions which include speaking and body movement, they could be treated differently by society. This could mean that the child would grow feeling different and become socially awkward. According to Peek and Stough (2010) people living with a disability live in poverty mostly and cannot access emergency services. Children with disability are at risk because some cannot be able to determine if disaster is looming too.
Green and Baker (2011) assert that the association between negative emotional expression and social development can be either positive or negative depending on various factors that include a child’s capacity to regulate emotions. In their study, Green and Baker (2011) hypothesized that a parent’s negative emotion expressions are linked to lower social development in children with intellectual disability compared to those that are typically developing. The study adopted a longitudinal research design where participants from 180 families of children with or without an intellectual disability were recruited. Positive and negative affect responses were recorded among the parents from naturalistic home interactions. The study examined both the father and mother’s emotional expressions as time-varying predictors of social skills. The study found that positive affect among parents was a vital contributor to enhanced social skills among children whereas negative affect caused a decline in social skills in children with intellectual disability and typical development. The study supported the findings of Breen and Haring (1992) through its emphasis on the integration of the people living with disability and those without to enhance the social skills and general quality of life.
It is easier for nondisabled people to initiate interactions with the disabled people in the society; however, be difficult for people with disability to begin communication with the nondisabled. The research differed from the two results above it since it involved watching specific children with disability in an environment where they were surrounded by family. The study gives a clear image of the difficulty experienced by children with disability in fitting in especially in families where parents do not depict positive emotional expressions.
In their study, Smith and Applegate (2018) hypothesized that stigma in children with mental disability is a real threat to the children. In their research, they show that this stigmatization could be as bad as a violation of their human rights and avoidance of interpersonal encounters with the mentally disturbed (Smith and Applegate 2018). Physical disabilities could also cause a person to find it hard to fit in. Human beings interact in different ways and in different settings, a person, will limitation is bound to communicate with another human at some point. Some disabilities are hard to point out on first look, and this could make a person who does not understand the limitation uncomfortable. Human beings expect each other to act in a certain way in a different setting, a way that is acceptable and reasonable. This is difficult for people with disability and those without a disability. There needs to be a way of integration so that the bridge is gapped. Integration skills should be taught from a tender age. This means that a child with a disability should not be mistreated but instead accepted, taught day to day skills that might help him/her to be independent and taught how to live and communicate with people without a disability.
Mychailyszyn and Elson (2018) performed an empirical investigation to determine the effectiveness of interpersonal psychotherapy (IPT) on teenage development. The research adopted a meta-analysis of ten studies that yielded 766 participants that were analyzed through the use of a standardized mean gain (SMG) effect size. The study results indicated that IPT-A was an effective intervention strategy for reducing depressive symptoms in adolescents especially those facing disability challenges. The research found that adolescents with depression can combat and live with the disorder with the help of their peers through interventions that adopt interpersonal psychotherapy (Mychailyszyn and Elson 2018). Through intrapersonal psychotherapy, they can get help and live healthy lives even if they are faced with disabilities that impair their quality of life.
A number of studies (Breen and Haring 1992; Green and Baker 2011) indicate that environmental factors within which a child is brought up in could determine how he turns out emotionally, socially and psychologically especially if they are living with a disability. Children raised in foster care requires a different kind of attention than those raised by their biological parents. Foster parents face the challenge of making the children with disability feel accepted and loved. This could prove difficult compared to the children with disability raised by their biological parents (Green and Baker 2011). Foster families need to undergo specialized training on a child with disability upbringing and in some instances have to modify their homes and lifestyles to accommodate them. The extended family needs to undergo training too. Children with disability raised in families were found to be different from those raised in foster families and large institution (Breen and Haring 1992; Green and Baker 2011; Shelton, Haddock and Ottaway 2018).
Shelton, Haddock, and Ottaway (2018) conducted a study that sought to establish the perceptions of medical workers in three European countries towards children categorized as typical, at-risk and with a disability. The researchers hypothesized family and community-based settings such as being around family and familiar environment were better than institutional settings for children with disability. The study adopted a quantitative research design and conducted an anonymous online survey to collect data on the hypothesis. They distributed letters with questionnaires to be filled and paid for the postal return. This was an attempt to get anonymous and honest data. The research findings indicated that positive affect towards children was associated with the favorability of attributes generated about “typical” children. Contrastingly, positive affect towards children was associated with less favorability towards at-risk children. Attributable favorability ratings generated for at-risk children were positively associated with attributes generated for children with disability. The researchers identified differences between respondents working in across the three countries (Shelton, Haddock and Ottaway 2018). The decision on the type of institution the children are put under is not fair since the children are not capable of participating in the decision. The children cannot receive the primary emotional care offered by a family too. This could cause a difference in how the child with disability relates to the world around him in the future. Separation from their real families could also mean, emotional and psychological trauma to them (Shelton, Haddock and Ottaway 2018). The methodology differs from the methodologies used above since they made their data collection method anonymous but has the similarity that they got firsthand information from people who interact with the mentally disabled children.
In their study, Brassart et al. (2016) hypothesized that immigrant parents and families face challenges when accessing medical care when raising a child with a disability. The research adopted a mixed methods research design that integrated qualitative and quantitative research. The researchers used a sample group of immigrants that included 20 women and one man, all Caucasians, including six speech-language pathologists, four social workers, four occupational therapists, three physiotherapists, two specialized educators, and two psychologists. They sampled individuals who had attained a good education. The research findings indicate that there several barriers that relate to immigration process affecting immigrant parents engagement and their understanding of treatment including language barriers, divergent beliefs about child diagnosis, misunderstanding of the healthcare system, divergent beliefs about role of parents in treatment, daily stresses and non-acceptability of the treatment goals. The results identified three critical facilitators that enhance immigrant parent’s understanding of treatment that include strategies for overcoming language barrier, developing a shared understanding of disability and strategies aimed at aiding parents to understand the treatment process (Brassart et al. 2016). The adopted methodology is similar to those adopted by Van Horne et al. (2018), by integrating quantitative and qualitative research methods.
Another study that examined family experiences was conducted by Staples and Essex (2016) investigating the impact of standardized and speculative house building model on the residential experiences of families with severely disabled children. The study adapted a comparative research design that used quantitative methods to gather data. The study used methodological approaches that include a questionnaire survey of parents of disabled children, a focus group undertaken with parents recruited from the survey to explore house design and experiences in greater depth, short questionnaire survey of the views of major house builders and a n interview of eight professionals from key departments including development control, planning policy, housing and children’s services. The study examines the barriers that exist in the provision of inclusive accommodation through building planning and developmental processes. The study found that there exist varying degrees of deficiencies including adaptation for disabled children, access, storage capacity, sound insulation, flooring, and separate facilities such as bathroom, enclosed gardens and security. These deficiencies in the planning and development of houses causing increased stress for families with disabled children. The study found that the issues of inclusive housing for disabled groups did not appear to be a priority for either developers or planners. The findings are attributable to lack or inadequate progress towards the establishment of evidence base for disabled housing needs in the area. Further the study found that despite the potential for disagreement between planners and developers about how to deliver inclusive housing accommodation for families with severely disabled children, there was a surprising low degree of consensus. However, there appeared to be little communication and collaboration between the professional groups responsible for planning and development of housing for disabled groups to facilitate real change in housing delivery.
A study conducted by Nazzal and Al-Rawajifah (2018) investigated the increased burden and demand for providing care to children with disabilities among Jordanian mothers. The study adopted a qualitative approach to explore the perspectives, challenges, and adaptations of mothers providing care to children with disabilities. The researchers conducted in-depth interviews using semi-structured guides, audio tapes, and verbatim transcriptions. The research results reflected four primary themes that include an increase in perceived stigma, fear of the future; increased perception of caregiving burden and adaptation to the child’s disability. The study concluded that there are critical gaps in the provision of family-centered services for mothers taking care of disabled children and multiple sociocultural challenges that influence participation and quality of life. It can be surmised that a child with a disability does not get the appropriate care; this could lead to his situation worsening. This conclusion is supported by several studies (Brassart et al. 2016; Staples and Essex 2016; Nazzal and Al-Rawajifah 2018) which concur that the level of engagement among parents is higher when they have a sense of trust, affiliation, and confidence in the systems of a country.
In their study, Ellen Selman et al. (2018) investigated the nature of stigma experienced by Somali parents of children with autism in the United Kingdom. The study adopted a community-based participatory research design. Data was collected through in-depth interviews of 15 Somali parents of children with autism living in the United Kingdom. The study results indicated that autistic children were often labeled and stereotyped while the parents were blamed or criticized for not controlling them resulting in social isolation and rejection. Poor understanding of the disability and prevalence of prejudicial judgments against mental illness and disability were linked to observed stigma.
The literature review has led to the development of the following hypothesis: There is little if any difference in parental experiences of disabled children born to immigrant families and non-immigrant families. The hypothesis was informed by the various literature examined indicating that parents of children disabled children from immigrant and non-immigrant families faced challenges similar challenges in the provision of care, seeking treatment and dealing with social-cultural connotations of disability within their respective communities (Breen and Haring 1992; Ellen Selman et al. 2018; Green and Baker 2011; Nazzal and Al-Rawajifah 2018). Parents like their children faced stigma in their communities and in their efforts to provide education and health care for their children. Institutions such as schools and hospitals still lack comprehensive and inclusive frameworks and policies that address the immediate needs of children with disabilities or their parents. Social and cultural perceptions of disabilities are often biased and result in stigma (Nazzal and Al-Rawajifah 2018; Ellen Selman et al. 2018); hence, the quality of life of both parents and disabled children are impacted adversely. Further, public institutions and systems such as housing planning and development do not take into consideration the fact that families can have disabled children (Staples and Essex 2016); therefore, causing parents and affected children to faced additional challenges in their homes.
Conclusion
The literature review indicates that children born and living with disability have a hard time fitting in the society especially if the community they are brought up in is harsh. It is difficult to cultivate the ideal environment for the children with disability to grow up and fit in since life could be diverse in the way situations occur. The literature indicated that there are prevalent deficiencies in social and institutional structures towards the provision of care to children with disabilities (Brassat et al. 2016; Nazzal and Al-Rawajifah 2018; Ellen Selman et al. 2018). Particularly, social interactions between children with disabilities and the rest of society are often influenced by prevalent notions, beliefs, and attitudes on disability. The literature revealed that strategic measures could be adapted to influence social networking and interactions among individuals with disabilities and those without disabilities (Breen and Harring 1992). Further, healthcare and educational institution have been described as deficient in adopting inclusive frameworks, policies, and practices for disabled children.
There is a notable trend where disabled children are marginalized in both the home setting and institutional levels. However, while the disabled children are depicted as having varied challenges in society; caregivers have also been identified as among those facing significant problems especially parents of disabled children. The lack of inclusivity in public institutions such as hospitals, schools, and housing developments causes parents to face increasing challenges as they work to provide holistic care for their children including social inclusion (Breen and Harring 1992; Shelton et al., 2018; Staples and Essex 2016). The literature suggests that disabled children and their families experience a diminished quality of life as a result of failures in adopting inclusive practices in social, health and educational institutions. People with disability and those without should be trained not only how to live together but also how to make sure that they live in a manner that is comfortable for everyone. People with disability have a task when it comes to initiating interaction, and this can be made accessible by use of intrapersonal psychotherapy. The review is meant to shed light on some ways that individuals in society can understand and cope with people living with a disability since they are faced with extra challenges.
The reviewed literature adopted various methodologies that included qualitative, quantitative and mixed methods research design. Identified quantitative research methods involved primary data collection interviews, questionnaires and surveys. The qualitative methods involved comparative analysis and synthesis of literature. The reviewed literature presented varied results that indicated children with disabilities face varied challenges including accessing and engaging in social interactions, accessing healthcare and education. While the examined studies were focused on specific issues that affect disabled children, their families and communities, there was a prevalent theme of stigma as a persistent consequence of disability for both affected children and their parents or families. The new hypothesis was developed on the basis of identical social and cultural issues that are associated with disabilities across communities irrespective of ethnicity or originality of parents (Green and Baker, Ellen Selman 2018; Nazzal and Al-Rawajifah 2018). Parents face challenges in identifying the right and appropriate care for their children in addition to dealing with social stigma associated with having to care for a disabled child.
References
Brassart, Elise, Claudia Prévost, Carine Bétrisey, Maude Lemieux, and Chantal Desmarais. 2016. "Strategies Developed By Service Providers to Enhance Treatment Engagement by Immigrant Parents Raising a Child with a Disability." Journal of Child and Family Studies26 (4):1230-1244.
Breen, Catherine G., and Thomas G. Haring. 1992. A peer mediated social network intervention to enhance the social integration of persons with moderate and severe disabilities. Journal of applied Behavior Analysis 25, 319-333.
Ellen Selman, Lucy, Fiona Fox, Nura Aabe, Katrina Turner, Dheeraj Rai, and Sabi Redwood. 2018. “‘You Are Labelled by Your Children’s Disability’ - A Community-Based, Participatory Study of Stigma among Somali Parents of Children with Autism Living in the United Kingdom.” Ethnicity & Health 23 (7): 781–96.
Green, S., and B. Baker. 2011. Parents’ emotion expression as a predictor of child’s social competence: children with or without intellectual disability’, Journal of Intellectual Disability Research, 55(3), pp. 324–338.
Memisevic, Haris, and Osman Sinanovic. 2013. "Executive Functions As Predictors Of Visual-Motor Integration In Children With Intellectual Disability." Perceptual and Motor Skills 117(3):913-922.
Mychailyszyn, Matthew P., and Damian M. Elson. 2018. "Working Through The Blues: A Meta-Analysis On Interpersonal Psychotherapy For Depressed Adolescents (IPT-A)." Children and Youth Services Review 87:123-129.
Nazzal, Mohammad S., and Omar M. AL-Rawajfah. 2018. “Lived Experiences of Jordanian Mothers Caring for a Child with Disability.” Disability & Rehabilitation 40 (23): 2723–33.
Shelton, Katherine H., Geoffrey Haddock, and Heather Ottaway. 2018. "The Attitudes Of Medical Professionals Toward Children And Children At Risk Of Separation From Parents In Eastern Europe." Children and Youth Services Review 87:26-33.
Staples, Jamie, and Stephen Essex. 2016. “Design, Disability and the Planning Challenge: The Reality of Living with Severely Disabled Children.” Planning Practice & Research 31 (3): 327–46.
Van Horne, Bethanie S., et al. 2018. "First-Time Maltreatment In Children Ages 2–10 With And Without Specific Birth Defects: A Population-Based Study." Child Abuse & Neglect 84:53-63
Bibliography
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