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Effect of Individualized Care of Adolescents Living With Down Syndrome

Abstract

Down syndrome is a common disorder that is affiliated with people born with a copy of the 21st chromosomal pair. The disorder is a chromosomal abnormality that often leads to a challenge in the development and health of children. The research proposal is therefore engaged with the developmental needs of the adolescents living with Down syndrome. The developmental needs in question focus on minimizing challenging behavior such as disruptiveness and wandering in adolescents with Down Syndrome. The challenge with the intervention in question is the research aims to determine whether the allocation of an individual caregiver for half of the study subjects will promote a more rapid pace of improvement. The social skills and reduction in challenging behavior are related to the aspect of a form of all-around development that may prompt them to live normal adult lives in the foreseeable future. The study aims at making use of two forms of research, the primary and secondary techniques. These will involve references to several journals, all affiliated with the behavioral improvement of the persons living with Down syndrome.

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Introduction

Down syndrome is a form of genetic disorder that comes about due to the chromosome disjunction whereby the addition of a copy of the 21st chromosome pair occurs in the person’s DNA. People with this disorder are plagued by intellectual disability and learning challenges; they also tend to have a weaker immune system and increased risk and susceptibility to a barrage of physical ailments. Therefore, the nursing interventions and heart disease journals have focused on this group intently while overlooking their mental development needs and challenges. The challenge of making these adolescents and children acceptable members of society is constantly dismissed in a quest to alleviate suffering and prolong life (Hadad et al., 2018). Therefore, this paper shall be intently focused on the quality of life and probability of social integration, and acceptable behaviors in adolescents living with down-syndrome.

Concerning the challenge at hand, the study shall explore whether individualized care or group care is better for adolescents living with Down syndrome. The primary focal point and the assessment points in this study shall rely on what can best be termed as challenging behaviors (Foley et al., 2015). Challenging behaviors can best be defined as behavior that is likely to cause damage to the individual and other people in their environment. In people with down syndrome, the challenges may include; disruptive behavior, stubborn behavior, poor socialization skills, and a propensity to wanderlust.

Problem Statement

The proposed intervention, in this case, patients with Down syndrome, should have one on one (individual caregivers for each adolescent) care to minimize their challenging behaviors. As opposed to one caregiver serving more than one individual with special needs.

The objectives of the study include;

  1. The research to acknowledge and list expected behavior in persons with Down syndrome
  2. The evaluation of the challenges faced by caregivers.
  3. The possibility of improving socialization skills and behavior of adolescents living with Down syndrome using personal caregivers for each individual.

Hypothesis

  • One on one care for patients with Down Syndrome is likely to elicit better outcomes for the patients’
  • Behavior modification and training are essential for persons who have Down syndrome.
  • People with Down syndrome are capable of living their whole lives if their needs are met.

Background

The evaluation of the health challenges related to the down syndrome as a disorder is consistently reported in the global scientific landscape; however, many scientists and researchers ignore the behavioral and social difficulties people face with down syndrome. The likelihood of aggressive behavior is almost unheard of, whereas the groups are likely to ignore people and social norms. People living with down syndrome often tend to involve themselves with disregard for policies and fail to follow instructions issued by their caregivers. This form of behavior is not applicable for social situations as it may jeopardize interactions among the afflicted parties and other members of their communities. The parents and other caregivers often focus on instilling basic skills and therefore overlook the socialization of these afflicted groups.

Evaluating the propensity of the children and teenagers living with down syndrome to engage in problematic or challenging behaviors is relatively high. The activities geared towards lengthening the lives of these persons are the primary focal points of the communities in question, and this may lead to failure in focusing on behavior that is geared towards a holistic life. The educators and communities charged with raising such children are therefore oriented towards establishing good behavior in learners living with down syndrome.

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Literature Review

There is a likelihood that children living with down syndrome will engage in behavior that may challenge their caregivers and parents. These behaviors are often seen in children and adolescents and can be remedied in these early stages. The behavior in question may lead to bodily harm in the professional who is caring for them. The behaviors most commonly noted include non-compliance, insufficient attention, social withdrawal, stubborn behavior, and a disregard for authority (Gandy et al., 2020). The research was carried out in forty children with down syndrome and a group of respondents with no disorders. The children with no disorders were found to have a 12.5% prevalence rate for disruptive behavior, while those living with down syndrome displayed a 55% rate of disruptive behavior. Therefore, this stance sets the floor for intervention in this form of behavior challenges in adolescents who have attained the most basic home training and now need social skills.

Down syndrome makes it difficult for adolescents to live normal lives with social interaction and good health. According to Haddad et al. (2018), youths with Down syndrome encounter differing capabilities in daily living activities, behavior, cognitive functioning, and social skills. They conducted a study to examine the aspects that influenced these youths’ quality of life from the perspective of a caregiver. It was illustrated that more interaction promotes fewer social challenges. Shields et al. (2020) also carried out a study to examine modifiable caregiver and child aspects persuading community involvement amongst kids with Down syndrome. The study results showed that augmented caregiver time accessibility is related to higher attendance frequency. Besides, the higher attendance frequency is related to greater child engagement (Huirachocha et al., 2017). Less child engagement was related to having less communication ability and sleep breathing disorder. It can be summed up that people with Down syndrome who actively engaged in the community more regularly enjoyed larger engagement.

Influence of Family members and society

Social groupings easily influence people with Down syndrome to learn specific social skills. Family members may therefore prove instrumental in the acquisition of these skills (Cuskelly, 2020). The influences that siblings can have on the children with Down syndrome developmental outcomes are associated with language, cognitive, social-emotional functioning, self-regulation, and identity development (Shields et al., 2020). The author noted that there is little research that addresses siblings’ effects on people with Down syndrome. The author asserts that siblings play an influential role to PDS that can comprise teacher; social referent and model; foe and friend; contrast; and protector, advocate, and caregiver. Besides, sibling relationship quality can influence developmental outcomes of PDS.

Social Intervention

The essence of the community’s involvement in the upbringing of these individuals was essential to better outcomes. It was found that some teenagers with Down syndrome were brought up within a comprehensive society. The adolescents with Down syndrome demonstrated that their social life was varied and rich, happening in many contexts with various companions if a more comprehensive array of interactions were availed (Cuskelly, 2020). Their thoughts of relationships were expansive, besides comprising fewer close associations (Dolva et al., 2019). The study depicted three contextual social participation patterns: the peer group design, family at home pattern, and the arranged company pattern. Thus, a one-on-one relationship with a family member or a peer friend, or an organized company friend will influence the PDS behavior positively.

It is also speculated that the social skill training programs may be helpful in the adolescents living with Down syndrome. The study by Kumalasari and Kurniawati (2018) revealed that examining such practices was essential to the development of interpersonal skills in the learners while promoting intellect in these participants. Therefore, social normalcy can be achieved if the learners are exposed to valuable influences in their socialization and training.

Methodology

The proposed research will investigate if people with down syndrome are less likely to have aggressive or anti-social behaviors if they are provided with one-on-one care. Typically, people having Down syndrome without assistance tend to demonstrate aggressive conduct towards other people (Valentini et al., 2021). Therefore, it is crucial to research if one-on-one care can make any changes.

Sample Size

Twenty individuals present the sample with down syndrome aged between 16 and 21. Ten of them receive one-on-one care, and the rest has regular treatment and assistance from medical staff. All participants in the study had moderate to significant mental retardation. Since the purpose of the study is to investigate if one on one therapy affects the conduct of people with down syndrome, it can be claimed as an independent variable.

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Research Method

The data collection will focus on secondary data collection methods that are both primary and secondary data collection techniques. The data collected will focus on the already found interventions concerning the behavioral analysis and challenging behavior in persons with Down syndrome. All the study participants will be adolescents, and the studies used will be no more than seven years old. The study will therefore make use of the existing resources already documented by researchers and the research organizations. The research shall consequently be based on already published works and reading to attain the required information. The primary data collection will focus on gathering appropriate persons for the research to be carried out in three to four sessions. The sessions are to be widely spaced for the study participants to latch onto a method of interaction that best suits the intervention in question.

Data Collection

The collection of theoretical data will be gathered first. The meaning of academic data encompasses the data attained due to the written or other secondary data sources. The sources in question will use the libraries and other public areas where one can source journals on mental health (Johnson et al., 2016). This means the secondary data sources will be essential in outlining the already found information in behavioral studies of the condition. The journal sources shall be supplemented by the government sources on mental development and aggressive behavior in people with Down syndrome. It will be especially partial to studies on adolescents.

The primary data collection shall make use of 10 study participants who will use individualized care. One-on-one care will entail the use of individual assistance for a caregiver at all times of the day and night. The caregiver has not been specified whether it includes a sibling or a parent at certain times and a paid nurse or teacher during daytime or learning hours. The 30-day period will focus on the changes in behavior and the probability that dependent variables such as communal interaction shall aid in assessing the patient outcomes.

Research Design

The research shall be primarily focused on the mental development of people with Down-Syndrome. The physical attributes and development shall be irrelevant as long as the study focuses on adolescents’ responses. The respondents’ behavior toward people in their direct environment shall be essential to the success of this study. The intervention is based on understanding the effects of personal caregivers for teens and how they may impact their descent into inappropriate behavior. The use of secondary sources will give the study the footing it requires, while the primary data collection will allow researchers to set the conditions they are interested in assessing.

Limitations

The assessment may have certain discrepancies with specific other findings in that the study fails to acknowledge certain aspects of behavioral interventions. The male participants are likely to display more instances of aggression and wanderlust. The task might not have a deep pool of secondary studies to borrow from as it is very age-specific. The study may also fail to regard more common challenges as persons with down syndrome are predominantly good-natured and less prone to fits of rage and tantrums. Nonetheless, the study is valid and shall use persons in the prime of their behavior development cycle.

Procedures

The study procedures shall involve the use of online resources in the university library, public libraries, and other online journal sources. Additionally, researchers shall view the YouTube channels of the behavioral scientists to assess specific aspects of behavior that are likely to be viewed and their different meanings. The use of these resources shall familiarize the researcher with the possible observations and already known scientific revelations. The searches shall employ critical terms that include; Down syndrome, anti-social behavior, challenging behaviors in Down syndrome patients, common behaviors in Down syndrome patients, and the adolescents with down syndrome behavior inventory.

Rationale

Rationale The proposed research will provide an understanding of how one on one care affects people with down syndrome. By investigating the effects of Down syndrome, scientists can help improve the lives of those who live them on a daily basis. This will help with previous treatment, which can lead to changes in children’s development, and find ways to help people with Down syndrome live healthier, happier, more productive, and independent lives. The study, therefore, aims at the improvement of the quality of life of the study participants and that of the future generations, too, as it makes them more functional members of society.

Data Analysis

The data analyzed shall help complete the study in that it shall be substantive in the description and assessment of behaviors displayed by teens with down syndrome. The data shall provide parents and guardians and other educators with a footing to decide what form of care will be essential for persons living with down-syndrome. The data shall explain whether group caregivers designated to an entire class or a small group of learners with a disability will suffice to socialize persons with Down syndrome or whether it will be necessary for each learner to have a caregiver. The evaluation shall thus focus on the aspect of individualized care over group care. Additionally, the study shall evaluate social and anti-social behaviors displayed by the participants concerning the mode of care. The overall evaluation shall be based on the family data collected, social skills noted, and other observations made by the researcher.

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Conclusion

The evaluation of the research proposal is focused on improving outcomes for persons living with disorders such as down syndrome. The assessment of the consequences for the adolescent’s socialization and interpersonal skills was the essential focal point of this study. The primary matter of debate concerning eliminating or reducing challenging behaviors in adolescents was centered around whether the learners would gain from the use of group interventions or individual interventions to promote good socialization and interaction for the learners. The study expects to use secondary and primary research to conclude what form of intervention would suit the adolescents. Therefore, the analysis will be instrumental in promoting positive behavioral traits and promoting good interactive skills.

References

Cuskelly, M. (2020). Siblings’ influence on the development of individuals with Down syndrome. The Oxford Handbook of Down Syndrome and Development. Web.

Dolva, A., Kollstad, M., & Kleiven, J. (2019). Friendships and patterns of social leisure participation among Norwegian adolescents with Down syndrome. Journal of Applied Research in Intellectual Disabilities. Web.

Foley, K., Bourke, J., Einfeld, S. L., Tonge, B. J., Jacoby, P., & Leonard, H. (2015). Patterns of depressive symptoms and social relating behaviors differ over time from other behavioral domains for young people with Down syndrome. Medicine, 94(19), e710. Web.

Gandy, K. C., Castillo, H. A., Ouellette, L., Castillo, J., Lupo, P. J., Jacola, L. M., Rabin, K. R., Raghubar, K. P., & Gramatges, M. M. (2020). The relationship between chronic health conditions and cognitive deficits in children, adolescents, and young adults with Down syndrome: A systematic review. PLOS ONE, 15(9), e0239040. Web.

Haddad, F., Bourke, J., Wong, K., & Leonard, H. (2018). An investigation of the determinants of quality of life in adolescents and young adults with Down syndrome. PLOS ONE, 13(6), e0197394. Web.

Huiracocha, L., Almeida, C., Huiracocha, K., Arteaga, J., Arteaga, A., & Blume, S. (2017). Parenting children with Down syndrome: Societal influences. Journal of Child Health Care, 21(4), 488-497. Web.

Johnson, R., Jarvaid, A., Narayran, M., & Michael, D. (2016). Aggression in Down’s syndrome. Progress in Neurology and Psychiatry, 20(5), 16-17. Web.

Kumalasari, D., & Kurniawati, F. (2018). The effectiveness of behavioral skills training (BST) program to improve personal safety skills for Down syndrome adolescent with mild intellectual disability. Psychological Research on Urban Society, 1(2), 81. Web.

Shields, N., Epstein, A., Jacoby, P., Kim, R., Leonard, H., Reddihough, D., Whitehouse, A., Murphy, N., & Downs, J. (2020). Modifiable child and caregiver factors that influence community participation among children with Down syndrome. Disability and Rehabilitation, 1-8. Web.

Valentini, D., Di Camillo, C., Mirante, N., Vallogini, G., Olivini, N., Baban, A., Buzzonetti, L., Galeotti, A., Raponi, M., & Villani, A. (2021). Medical conditions of children and young people with Down syndrome. Journal of Intellectual Disability Research, 65, 199– 209. Web.

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StudyCorgi. 2022. "Effect of Individualized Care of Adolescents Living With Down Syndrome." October 20, 2022. https://studycorgi.com/effect-of-individualized-care-of-adolescents-living-with-down-syndrome/.

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