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Knowledge and Perception of Parents with Children Living with Autism

Info: 2428 words (10 pages) Nursing Literature Review
Published: 4th Jun 2020

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Tagged: autism

Introduction.[1]

This study takes an aim at analysing the family knowledge and perception with children living with Autism. It further takes more interesting aspect on how various members within the family contribute in caring for these children. The study will also examine how parents living with children with Autism are treated in the society. In addition, it will also try to apply the researched areas to the social care sectors within the National Health Services (NHS). In conclusion, the study will be exploring the differences between girls and boys with Autism. The method undertaken for this study will be a comprehensive evaluation of ten (10) researched articles on the subject of family knowledge and perception with children living with Autism.

Research Questions

  1. What are parents’ experiences when living with an autism child?
  2. The risks involvements in living with autism children?
  3. How are autism children treated in society?

Rational/Added Value.

Current researched studies and knowledge have revealed that, families with children living this type of lifelong neurological disorder sometimes have little or lack knowledge about the condition and hence makes it very frustrating to cater for these children (Mukaddes , 2012). The National Health Service (NHS) and other reputable stakeholders in health like The World Health Organization (WHO), in support of this,  are putting up procedures to support health carers and families with the essential support to cater for these children (NHS Choice, 2016; WHO,2017). Report by the Centre for Disease Control and Prevention (2014) indicates that 1 out of 100 of the world population is suffering from this condition. Likewise, National Health Services (NHS, 2018) points out that 1 out of every 58 children born in the united-kingdom suffer from autism.

About 80% of people living in England, according to the NHS Choice (2018) supports that, children living with autism should be given the necessary backing needed. The results from this survey clearly indicates that, there are still about 20% of people in England who need to be enlighten on this condition and hence led to this study.

The originality of this study lies in the fact that, articles and evidences use in the study were appraised

with the help of a CAPS TOOL. Aveyard (2014) supported that, it is very essential to critically appraise articles and evidence as it helps the researcher and other reader in making a good discernment of the information that is used. This study is a competitive advantage in giving its readers a better understanding of the topic chosen. To conclude, the study is also essential for an award of a degree for Bachelor of Science in the University of Bedfordshire.

Theory’s

  • Erikson’s psychological stages of developments.
  •  Labelling theory.
  • Behavioural theory

Aim and Objectives.

  1. To explore the cultural and social factors that affect the parents   living with children with autism.
  2. Understanding the autistic parent’s perspective on the condition and their coping ability.

3.   To explain the psychological, financial and emotional burden that is faced by the autistic parent and its impact on employment.

4.   To identify the impact of these perceptions on the development of the Autistic child.

5. The support mechanism available to families.

A qualitative study conducted by Huws and Jones (2009) using a semi structured interview to explore the lay perception of Autism. The study aims was to provide an in-depth analysis and generalisations of the perceptions and understanding of the particular group of subjects rather than the general population, the sample size was 10 which is far below any sample size which is generalisability according to Parahoo,( 2014). Findings from these studies indicated that participants, during the interview had no knowledge on Autism and none of them tried to ask the interviewer what autism meant. From the analysis four outcomes were generated. These are autism as a transgressing normative expectancy; functional ability discourse and dependency; the discourse of mental status and autism; explanatory discourses and autism. Entirely, it was evident from the findings of the study that people drew their perceptions and understanding of a normal childhood development and had little understanding of the autistic child. It is very relevant as per the studies to encourage the exposure of children with this condition to the society so as to increase awareness and further promote knowledge.

Wade (2008); and Schreck and Mulick (2000) in their studies showed evidence of some sort in terms of the awareness and a degree of perception of parents of the autistic child. Huws and Jones contradict from their evidence on perception indicates no level of perception by participants in the study. It is very keen there should by mass media and public education to promote the awareness of the condition and parents with autistic children sharing their experience. The role of parents and support are more evident in mothers with autistic children than those without. Tunali and Power (2008) also suggested that both mothers of children with and without autism focus on their parental roles. However, Culler and Kozloff (1987) opines that it is hard for mothers with children living with autism to pursue higher jobs and careers because of increase demand of care by these children.

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Methodology

As part of health professionals’ responsibility in meeting a component of clinical governance, health professionals are therefore encouraged to support their practice with current evidence-based knowledge. In view of this, there are countless research works published every year and it is the responsibility of health professionals to carry out literature search technique in order to get relevant research knowledge related to their clinical area of practice. One of the key responsibilities of nurses and social workers is searching for relevant evidence and informing them in daily practice.(NMC 2013). Similarly, Gerard(2013) supported that literature form an important part of a proposal since it helps the researcher to analysis various literatures.

The search of literature begins by identifying academic databases from the university of Bedfordshire electronic library databases such as discover, digital library catalogue and health and social science databases as this gives reliable and evidence-based data which is relevant to the research topic (Green, 2000). Academic database was preferred due to how comprehensive and organised the information there is organised for the study (Bell, 2010). Again, Polit and Beck, (2014) suggest that the use of databases as source of research information has been proven as gold standard in getting literature review.  Furthermore, the choice of words selected for the search would be done by giving much attention to details which lead to the preferred evidence expected for the study.

In searching for relevant evidence, the writer will use keywords such as Autism, attitudes of autistic parent, perception of autistic parent, psychological and social impact on autism and knowledge of parents on autism. According to Polit and Beck (2014); Ritchie (2003) using keywords in searching for information is very vital in arriving at relevant evidence in answering the research question the writer then did a more precise and focused search to trim down to the field of social sciences, psychological and health research using the recommended research database. Cumulative index to nursing and allied health (CINAHL), Medline, psycINFO, PubMed, SocINDEX with full text, ASSIA (Applied social studies index& abstract and psycARTICLES. Effective and comprehensive literature searching must be done using several databases since this helps to widen the scope and aid easy understanding of the concepts from a diverse perspective. The Boolean operator would also inculcate to ease the search process NOT, OR, AND thereby narrowing down the search items. The Boolean operator helpes to arrive at numerous useful literatures which were scrutinized to arrive at preferable results of articles that answer the research question. In all after the use of these strategies and processes there would be a lot of articles and these would be relevant to answer the research question selected.  The writer will utilize these resources with the help of the university Liberian to arrive at evidence for the purpose of this study.

ETHICAL AND FEASIBILITY ISSUES.

Ethical issues are keen to every research work involving human subjects; all research work must be approved before its commencement (Gerrish and Lacey, 2010). Ethical considerations in conducting a research study serves as a moral guide for the researcher and helps to direct the agenda of the study, also the ethical committee looks into the effects the said study has on its participant and ensure there is no harm on researched subjects (Harcort and Sargent, 2012). Parahoo (2014) opines that individual stages of the research work have their own ethical implications and associated direction of the work. All research projects must ensure proper ethical approval as well-informed consent from its participant to enhance the genuity of the work and to protect the interest of its subjects before it commences.  In conclusion the writer in this context will hence apply all available ethical considerations and all background studies to ensure that a complete work is done.

Research Plan.

McKenzie’s (2018) research cycle will be used to analysis research plan.

Date Action
November Proposal planning
December Researching information {speak to supervisor}.
January Organising and arranging information.
February Blending the work together {speak to supervisor}
March Evaluating the work.
April Reporting and review.

Reference list.

  • Aveyard. H (2014) Doing a literature review in health and social care: A practical guide. (3rd. edn). GB: Open University Press.
  • Baker & McKenzie (2018) SWOT Analysis, pp. 1–7. Available at: http://0-search.ebscohost.com.brum.beds.ac.uk/login.aspx?direct=true&db=buh&AN=129722490&authtype=shib&site=eds-live&scope=site (Accessed: 8 November 2018).
  • Bell, J. (2010) Doing Your Research Project: A guide for first time researchers in education, health and social sciences. Berkshire: OUP.
  • Booth, A. Rees. A, and Beecroft, C. (2015) ‘Systematic reviews and Evidence Syntheses’, in Gerrish, K. and Lathlean, J. (eds.) The Research Process in Nursing. 7thedn. India: John Wiley & Sons, Ltd. pp. 333-351
  • Clark, A. (2014). Understanding research with children and young people.
  • De Montfort University (2013). Literature searching process. Available at: http://www.library.dmu.ac.uk/Images/Howto/LiteratureSearch.pdf. (Accessed 01 November 2018).
  • E. Gray, D. (1993). Perceptions of stigma: the parents of autistic children. [online] onlinelibrary.wiley. Available at: https://onlinelibrary.wiley.com/doi/abs/10.1111/1467-9566.ep11343802 [Accessed 4 Nov. 2018].
  • Gerard, G. (2013). Basic research methods: an entry to social science research. London: SAGE PUBLICATIONS, pp.3,25,38.
  • Gerrish, k., Lacey, A (2010). The research process in nursing. 6th edn. West Sussex; Blackwell / publishing Ltd.
  • Gerrish, K., Lacey, A. (2010). The research Process in Nursing.  6thedn. West Sussex: Blackwell Publishing Ltd.
  • Green, S. (2000) Research Methods in Health, Social and Early Years. London: Heinemann.
  • Harcourt, D. and Sargeant, J. (2012) Doing ethical research with children. McGrawHill Education (UK).
  • Jaci C. Huws & Robert S. P. Jones (2009) Diagnosis, disclosure, and having autism: An interpretative phenomenological analysis of the perceptions of young people with autism, Journal of Intellectual & Developmental Disability, 33:2, 99-107.
  • LoBiondo-Wood, G. and Haber, J.  (2014) Methods and critical Appraisal for Evidence-based practice. 8th edn, China: Elsevier Mosby.
  • Moule, P. Aveyard, H. and Goodman, M. (2017) Nursing Research: An Introduction. 3rd edn. London: sage publication Ltd.
  • Mukherji, P and Albion, D. (2009) Research methods in Early Childhood. London: Sage
  • Mukuddes,N.M. (2012), Gender Identity Problem In Autistic Children. John Wiley & Sons, {Online}, Available at https://onlinelibrary.wiley.com. (Accessed on 1st Nov. 2018).
  • NHS CHOICES (2018), Autism spectrum disorder (ASD). {Online}, Available at; https://www.nhs.uk/conditions/autism/. (Accessed on 1st Nov. 2018).
  • NMC. (2013). The code for nurses and midwives (0nline). Available at http://www.nmc.org.uk/standed/code (Accessed on 3rd November 2018).
  • Parahoo, K. (2014) Nursing research: Principles, Process and issues. 3rd edn. Basingstoke: Palgrave Macmillan.
  • Parahoo, K. (2014) Nursing research: principles, process, and issues. 2nd edn. Hampshire: Palgrave Macmillan
  • Ritchie. (2003) Qualitative research practice. London, sage publication.
  • Volkmar, F. (2009). A practical guide to autism: what every parent, family member, and teacher needs to know. [online] Available at: https://www.vlebooks.com/vleweb/Product/Index/6690 [Accessed 4 Nov. 2018].

 

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Autism can be defined as a disorder of neural development which is characterized by an impaired communication and social interaction as well as by restricted and repetitive behaviour. Autism affects the processing of information in the brain through altering how the nerve cells and their synapses do connect as well as how they organize.

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