Early Childhood and Special Needs - Research Proposal Example

Alison Niles No: U11555690 Early childhood and Special Needs ED2000 lectures: Day 3 or Evening 6-8 Children with Down Syndrome and the effects it has on their family within a Primary School in East London Purpose and Aims The research aims at finding out the effects of Down syndrome on the health and social wellbeing of a child. This entails getting an understanding on the ability of the child to have a normal social status and the health problems that arise due to the Down syndrome (Bull, 2011). The study will also look at the effect of Down syndrome on the family as a whole. This is owed to the fact that the family is the first unit of association that is directly affected when a child Down syndrome and they will take the responsibilities of providing care and love to the child a well as catering for medical expenses. The other aim of the study is to evaluate the support services available to the family of a child who has Down syndrome and the effectiveness of these measures as well as the measures that can be taken to improve the efficiency of these support mechanisms. This proposed research is important, as it will aid in the understanding of the steps taken by the government and other support institutions in dealing with the problems caused by this problem to the family unit. The potential users of the research are the government, non-governmental organizations, and families who care for a child who has Down syndrome. Specific Research questions This research aims at answering the following research questions: 1. How does Down syndrome affect a child’s health and social wellbeing? 2. How does Down syndrome affect the family as a whole? 3. What support services are available to families and measures to improve the support services? Literature Review This part of the research explores the available research and studies by other writers on Down syndrome, its effects on the child, the community, the roles of the government and the future goals. This will enable the researcher have an understanding of the inclination to be taken in the study to fill the gaps in the topic of study and generate ideas and criticism on the state of the research by other writers in terms of the strengths and weaknesses. Down syndrome also known as Trisomy 21 entails a situation when a child has a genetic disorder through the presence of all or part of a third copy of chromosome 21 (Bryant, et al. 2005, 184). The main effects that are evident in children with Down syndrome is the delay in physical growth or low muscle tone, upward slant to the eyes, small stature, and intellectual disability (Broers et al., 2012, p. 863). These characteristic features are not observable in all children with Down syndrome with the degree of presence varying with the individual child from low to high presence and sometimes none at all. Down syndrome in a child increases the chances of having medical conditions including gastro esophageal reflux, celiac disease (intolerance of gluten), increased risk of vision and hearing problems, and the increased chances of developing leukemia. One of 800 children in the United States has Down syndrome. Children with Down syndrome, therefore, need a lot of care and attention in the family unit, from siblings and parents. It is the prevalence and the above effects that have necessitated the need for the undertaking of this study to understand the effects having a child with Down syndrome on their family. Research by Whitt-Glover and others, shows that the health of a child with DS is affected through their development and tendency towards being obese; children with DS tend to be younger and heavier and had low levels of physical activity (Whitt-Glover ET AL., 2006, p. 158). Beeghly and Cicchetti found out that the peer networks of children with Down syndrome were less developed and the reasons given were the challenges in peer related competencies and absence of social advantage in the peer context (Beeghly & Cicchetti,1990, p. 340). This is whereby children with Down syndrome are not able to form true friendships and have a preference of playing alone. The other effects of children with DS on the family include time constraints on the other siblings due high attention to the DS affected child, and reduced socialization with other families. Other effects include the need to be extra careful by the siblings of DS affected child through locking doors and other ways to aid in dealing with behavior challenges faced by the DS child, diminished financial resources, exposure to stress from pressure of caring for a DS child, and difficulty in dealing with behavior of a DDS child by siblings. Despite the challenges, there are some benefits to the Child and the siblings including care and compassion they receive from siblings, increased tolerance, and acceptance of disability, development of patience and being supportive by the siblings. On the attitudes by parents and siblings towards Down syndrome, researchers Bryant et al. and Mulroy et al. point to the negative attitudes and negative impact on the family with a child suffering from DS. The family unit seems to be negatively affected as demonstrated by the findings of this research. However, this research mainly focused on the views of the parents mainly the mothers and emphasized on diagnostic tests for DS and termination of such pregnancies forming its main weakness. The other factor prevalent in previous research is that the impact and attitudes by families and siblings on having a child with DS is that the relation dependent on wellbeing of the parents, personality of the affected child, mental health, and attitude. However, research by Cuskelly and Gunn point to the lack of poor adjustment between children with DS and their siblings. He points to an examination of the processes within a family as a measure to gauge the social relation between children with DS and their siblings for a better understanding of the problem. This begs the question whose research is to be believed, forming the need to take a comprehensive study to bring into consideration the opinions of all the affected parties in one study. This is the research gap that the research will be able to fill by getting the opinions of the affected child, parents, and siblings and analyzing them to make a comprehensive conclusion. The proposition by Cuskelly and Gunn on the use of family processes for analysis of relation between children with DS and their siblings and parents gave the research a springboard to take the perspective of including all the members of the family in the research. The other research gap that this study aims at filling is the need for the provision of psychological support for families caring for children with DS as this has not is dealt with in the researchers done already. The findings by Mulroy et al. show that the support families need is the provision of a “congruent, meaningful and sustainable family routine” (Mulroy et al., 2008, p. 227). Evident from the research is that there is financial and resource support for families that have children with DS but the support is limited. Previous research on the effects of Down syndrome mainly dealt with the impact of having the disorder by a child on the mother with the conclusion those mothers has considerable stress and depression (Mulroy et al., 2008, 217). Methodology This section details the study design employed, techniques harnessed in the selection of the population, sampling, and analysis of the selected part of the population. Data collection, analysis, and techniques used in the presentation of the data are also explored in this part of the research proposal. Research Design The research design that will be used in this study is descriptive research design with the research paradigm being qualitative research. The main reason or the choice of the descriptive research design is that the information and data to be collected in the research involves the values, beliefs, experiences, attitudes, and opinions of the participants and there is no intention of the researcher finding out the cause and effect in the research. The aim is finding the characteristics of the current situation and the opinions of the participants for the future in terms of the effects of Down syndrome on the children and effects on them socially, the impacts on the family unit and the state of support received by the family as well as the opinions for future aid strategies. These aspects of the research are well articulated and analyzed through descriptive research design. The qualitative paradigm taken in the study is informed from the understanding that the research takes on beliefs and opinions that may not be articulated statistically in numbers or ratios paving the way for the use of qualitative research. The research strategy that will be taken by the study is the survey method owing to the descriptive nature of the study. The main reasons for the choice of survey method as a strategy for the implementation of the research is, it is relatively easy to implement, allows for the collection of a large amount of data in a limited period and from a large sample. The other reasons for the choice of survey method are that it reduces errors in data collection and reduces the costs used in the research due to the low finance available for the study. The other factor that allowed for the choice of survey method is the ability to collect a wide rand of data including opinions, beliefs, behavior, facts, and attitudes. Population and sampling Target population The target population on which the study will be conducted is the families that have children who have Down syndrome in the East London area. The reason for the choice of this population is that they bear the brunt and challenges that come about from having a member of their family affected by Down syndrome. The population consists of all the family members including the father, mother, siblings, and members of the extended family. Sampling techniques Sampling design is a process of selecting a number of individuals or items from the population such that the selected groups contain elements representative of the characteristics found in the entire group (Kuada, 2012, p. 38). Probability random sampling strategy was and ensured the selection of an appropriate sample of the study. Systematic sampling relies on arranging the study population according to some ordering scheme and then selecting at regular intervals through that ordered list, starting with the first project, then proceeded with the selection of every 4th projects in the project list (Gesa et al., 1992, p. 88). This technique will be used in the selection of 43 families for the participation in the study with every fourth family selected from a list of families with children who have Down syndrome to be accessed from the East London health records. Sample The sample will consist of 43 families who have a child with Down syndrome with the reason for the choice of the sample size being accessibility to the researcher, ensuring the time given for the research will be enough to conduct the research in totality, and the need for comprehensiveness in the study of the chosen sample. Validity Ensuring a validity rate of 0.75 will be maintained in the research will aid in making the data valid. Validity is the extent to which research results can be accurately interpreted and generalized to the populations. Validity, therefore, forms a means by which the results and conclusions made can be used as a representation of the whole population of students in the case of this study. An estimation of the validity of the items in the questionnaire will be done by the supervisor to ensure a high rate of validity through giving judgment on the item on a scale of relevant, quite relevant, and not relevant (Clough P & Nutbrown, 2012, p. 45). A mean of the judgment will be made by dividing the items rated relevant by the total items in the questionnaire (n/N) to ensure maintenance of high validity ratios. From the supervisors’ average judgment, the confidence level of the study on its ability to be extrapolated to the whole population will be calculated. Reliability Ensuring a high reliability of the data is the priority of the researcher and this will be ensured by having high reliability rates of 0.75. This will be achieved by having a rank of the items by the supervisor as used in the checking for data validity. As previously given, the reliability scale shall range from reliable, slightly reliable and not reliable. The reliability of the data shall be calculated through the generation of the average reliability measure as generated by the supervisors rank and calculating the reliability confidence level. Data reliability ensures the results of the research can be used in making of economic decisions that reflect on samples, opinions, and responses. Ensuring the data collection and analysis are consistent and stable improves data reliability (Clough & Nutbrown, 2012, p. 23). This measures aids in augmenting the reliability of the data in meeting and generation of conclusions of the study. Data collection The selection of data collection methods is based on the objectives of the study, nature of the data to be collected and time available for the study. The study will make use of interviews, focus groups, and questionnaires as data collection methods. Interviews The researcher will use interviews as the main data collection technique owing to the benefits that can be harnessed by the researcher in having variety of information. The research is mainly concerned with views, perceptions, opinions, and attitudes of the respondents, which are best collected through interview technique. Interviews will allow the researcher to interact with the affected families helping them to open up and give their views openly on the effects and the challenges they undergo in the process of caring for the child with Down syndrome. Interviews will also allow the researcher to get into contact with the affected child, get their medical records; his/her views, and look at the physical characteristics and their variation in different children with DS. The other reason for the choice of interview technique is that there is a high use of nonverbal expression during the interview process that relates a great deal of information necessary for the better understanding of the research problem. This cannot be harnessed through other data collection methods. Interviews will also allow the researcher to seek for clarification, ask further questions, and ask questions from the participants in an aim to develop a rapport with them for the benefit of the successful completion of the study. Questionnaires Questionnaires will be distributed to other members of the family who will not be interviewed by the researcher with questions appertaining to their views on the effects of Down syndrome, their experiences in caring for the child and the support they have received from government or other support organizations. The respondents will also present their views on the strategies they believe will be helpful in helping them to overcome the challenge or improve their situation. The main reason for the inclusion of questionnaires in the study is to augment the amount of data collected by the researcher for the formation of the conclusion. The other reason is that it will save on time requirements for the study, as interviewing of one or more members of the family will occur concurrently with other members of the family filing the questionnaire for the collection at the end of the interview. This will also allow aspects of the research problem not touched on by the interview to be brought to the fore by other members of the family in the questionnaire. A questionnaire will also augment the objectivity of the study that may be compromised through the interview process and in the focus groups due to the collection of data in a standard way. Focus groups Powell and Single define focus groups as a group of individuals selected and assembled by researchers to discuss and comment on, from personal experience, the topic that is the subject of the research (Powell & Single, 1996, p. 499). Focus groups of the families caring for a child or children with Down syndrome is to elicit feelings, attitudes, experiences, beliefs, and reactions in a manner that would not be possible with the use of questionnaire or interviews. The focus group will also allow the participants in the study to take control of the discussion providing a lot of information to the researcher in the process. The other reason for the choice of focus groups is that it will allow the researcher to know the consensus by the different families on the issue of Down syndrome effects on the child, the family, the society, support by the government and other support groups, and the strategies for enhanced support to these families (Powell & Single, 1996, p. 499). Ethical Consideration A number of steps that will be taken to ensure the research will be done within ethical considerations include: Informed Consent Informed consent is ensuring the decision of the participant in the study was made on their own without any coercion or promise of benefits in terms of monetary compensation or benefits in kind from the researcher. Informed consent encompasses the fact that the participant had all the information appertaining to the needs of the study, the effects, the purpose of the study, their privacy, and confidentiality in the study as well as the risks they were making in accepting to participate in the study. The respondents will be provided with information on the purpose of the research, participation duration, risks, or benefits to them and to others from their participation. The researcher will inform the participants of the measures to ensure their privacy and confidentiality is maintained in the study. The researcher will also inform the participant that the research is for academic purposes only to reduce the levels of suspicion and make them willing and impartial in the provision of information required by the researcher. Privacy and Confidentiality Confidentiality entails the promises made by a researcher to participant or a respondent in the course of a research that aims at limiting the access to information relating to the participants to third parties or other persons. Maintenance of high levels of privacy and confidentiality will be made in the study through passage of data to third party only with the consent of the respondents and for the benefits of the performance of the study only and this will be resorted to only when it is highly necessary. Anonymity Anonymity is the state where the identity of an object or person is not revealed in the course of conducting or presenting information to the public or in writing. In research, anonymity entails keeping secret the names or not revealing the identity of the respondents who participated in the study. Anonymity will be ensures through not revealing the identity of the participants to third parties for personal benefit or for use by other third parties for their own personal gain. The identity of the participants will be made anonymous through use of numbers to refer to the interviewees or other participants. The benefits of this research include The main benefits of this research are that it will augment the understanding of the effects of Down syndrome on the individual, family, and society in general. The other benefit of the research is that it will give an understanding of the strategies that can be taken to improve the situation of families caring for a child suffering from Down syndrome. This will be beneficial for the government, society, non-governmental organizations, and the family. The other benefit is that the research explores the available measures taken to support families affected through having a child with Down syndrome. Risks and benefits to the participants There are no risks to the participants in the study since their involvement in the study is to provide data to the researcher and receive information when the research will be completed. The main benefits to the researchers include that they will be able to get access to the outcome of the research and be informed of the children with Down syndrome and the effects it has on their families within a Primary School in East London. This information will allow them to get more information on the strategies to care for children with Down syndrome and increase their knowledge. References Beeghly, M. and Cicchetti,. D. (1990). Children with Down Syndrome: A Development Perspective. Cambridge: Cambridge Press. Broers, J.M. C., Gemke, J.B.J. R., Weijerman, E.M., Kuik, D-J., Hoogstraten, M.W.A. I., and Furth, M.V.A (2012). ‘Frequency of low respiratory tract infections in relation to adaptive immunity in children with Down Syndrome compared to their healthy Siblings’, Nurturing the Child,101(8) pp.862-867. Bryant, L., Hewison, J.D. and Green, J.M. (2005). ‘Attitudes towards prenatal diagnosis and termination in women who have a sibling with Down syndrome’, Journal of Reproductive and Infant Psychology, 23(2), pp181- 198. Bull, M.J.(2011). ‘Health supervisions for children with Down syndrome’,128, August [Online].Available at: http://pediatrics.aappublications.org/content/128/2/393.full.pdf+html (Accessed: 10 May 2014) Cuskelly, M and Gunn, P. (2006). ‘Adjustment of children who have a Sibling with Down syndrome: Perspectives of mothers, fathers, and children’ Journal of Intellectual Disability Research, 50(12), pp.917-925. Mulroy, S., Robertson, L., Aliberti, K., Leonard, H. and Bower, C. (2008). ‘The impact of having a sibling with an intellectual disability: Parental perspectives in two disorders’, Journal of Intellectual Disability Research, 52(3), pp.216-292. Whitt-Glover, M.C., O’Neill, K.L. and Stettler, N. (2006). ‘Physical activity patterns in children with and without Down syndrome’, Pediatric Rehabilitation, 9(2), PP.158-164. Clough, P., & Nutbrown, C., 2012, A Students Guide to Methodology, New York: SAGE. Gesa E., Kirsch, & Patricia, A. (1992). Methods and methodology in composition research, New York: SIU Press. Kuada M., 2012. Research Methodology: A Project Guide for University Students, New York: Samfunds litterature. Powell R.A. and Single H.M. (1996) ‘Focus groups’, International Journal of Quality in Health Care 8 (5): 499-504. Read More