Challenges of Caring for Autistic Children: A Research Proposal

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RESEARCH PROPOSAL
Contents
RESEARCH PROPOSAL........................................................................................................................1
TITLE..........................................................................................................................................................1
RESEARCH QUESTION.........................................................................................................................1
INTRODUCTION......................................................................................................................................1
BACKGROUND........................................................................................................................................2
AIM.............................................................................................................................................................3
OBJECTIVES............................................................................................................................................4
LITERATURE REVIEW...........................................................................................................................4
METHODOLOGY.....................................................................................................................................5
THEORETICAL PERSPECTIVE............................................................................................................6
DATA COLLECTION METHOD..............................................................................................................6
QUESTIONNAIRE....................................................................................................................................7
SAMPLING TECHNIQUE........................................................................................................................9
DATA ANALYSIS......................................................................................................................................9
ETHICAL CONSIDERATIONS.............................................................................................................11
REFERENCES........................................................................................................................................12
APPENDIX...............................................................................................................................................13
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TITLE
Challenges faced during the care of autistic children
RESEARCH QUESTION
What are the challenges faced by the parents and health care professional while
providing care to the children suffering from autism spectrum disorder in the UK?
INTRODUCTION
There are various congenital abnormalities and neurodegenerative disorders that affect
the child since birth and impact on their living and quality of life ( Tustin, 2018). Autism is
one such condition which is present since birth and is characterized by impaired ability
to communicate and interact socially. It is a serious developmental disorder that affects
the cognitive functioning and thinking of the child (Kim, 2012). Moreover, autism
spectrum disorder is an umbrella term used to describe various conditions that are
neurodevelopmental disorders. Individuals suffering from autism and such disorder
usually show restricted behavior and stereotyped interests in patterns of their behaviour.
Autism is a widespread and common condition that affects individuals globally. The
statistics of 2017 shows that globally the prevalence of autism in children is 1 in 59
children but Japan being most affected country by this condition has the incidence rate f
autism in children as 161 children per 10,000 (Gomot and Wicker, 2012). In UK alone
autism affects about 700,000 people that mean 2.8million people have relative o autism.
It was also seen that one in four children affected by this condition is boys and boys are
at higher risk of development of such a disorder. Autism is characterized by symptoms
such as delay n language or social development, issues with communication, repetitive
behaviour, movements, motions, rigid adherence to specific behaviour, sensitivity to a
specific factor, and fixed interests. The aetiology of autism is unknown but some
hypothesis have been formulated by evidences in research field that autism may be
caused due to some suspected risk factors including genetic mutations, immediate
family member with autism, fragile X syndrome, old age pregnancy, low birth weight,
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exposure to infection during pregnancy, metabolic imbalances, fetal exposure to harmful
medication in intrauterine life etc. (Kim, 2012).
DSM diagnostic criteria to diagnose and classify mental disorders has classified autism
in different types. It is a journal published by APA (American Psychiatric Association), it
is widely accepted and used classification criteria by the clinicians in health care to
classify mental disorders. The fifth recent addition of DSM V classified autism spectrum
disorder into five types that are with or without accompanying intellectual impairment,
with or without accompanying language impairment, linked to another known medical or
genetic condition, with catatonia and associated with additional neurodegenerative or
mental disorder. Children mostly are diagnosed with autism in their early childhood
before the age of 4 years and even earlier and some can take time to be evaluated till
the age of 8 years. The symptoms arrive with age mostly between 12 to 24 months of
age but it also can be delayed in some cases (Kim, 2012). It is a known myth that
autism will heal with age and individual will get better but it is not the reality autism is a
lifelong condition with the continuation of the symptoms till adult life. The parents who
are the primary carers of autistic children and the health care professionals who provide
services to them are the ones who face various challenges during their care process.
These challenges are usually not evaluated and are the basic cause of unmet needs of
autistic children. This research focuses on evaluating the problems faced by the carers
of such children and the impact of these challenges on their health and wellbeing.
BACKGROUND
Autism present different challenges and issues throughout life for the individual are
suffering with it and also the ones caring for them. Children with autism cannot live a
normal life without facing the issues of daily routine and performance (Hobson, 2016).
As man is a social animal it is important for him to interact socially and stay in
connection with others but autism produces an inability to communicate and interact
that is a basic requirement of human life. Schooling is also not a normal process for
such children it produces severe stress and impact on their wellbeing, here are two
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reason why autistic child cannot stay good in schools for normal children one is the
problems they face while coping up with the normal children and environment set for
them, that is usually out of sync with the abilities they possess and secondly while they
develop the skills for this environment after school they will have to leave this
environment and go to a completely new environment (Autism and Developmental
Disabilities Monitoring Network Surveillance, 2010). Parents of autistic children
repeatedly report that living with an autistic child is not an easy task it comes with a lot
more responsibilities and challenges that they have to face on daily basis. Also, the
health and social care staff working with such children usually face difficulties in
providing their requirements as per the services they choose to provide. There is an
always unmet requirement of such children that is difficult to promote and address.
According to a study by Ludlow, Skelly, and Rohleder, (2012) did a thematic analysis of
data collected on the topic of challenges faced by the parents with autistic children
including 20 families reported that five core problems were faced by them, dealing with
judgment from others, dealing with challenging behaviour, impact upon family, lack of
support, and coping and importance of support while caring. The study also reported
that parents also believe that they require additional support from external sources to
provide efficient care and have less impact on the care process on their own physical
and mental wellbeing.
AIM
The aim of this research is to critically evaluate the challenges faced by the parents and
health and social care workers caring for the children suffering from autism in the UK.
OBJECTIVES
 To evaluate the challenges faced by the parents of autistic children
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 To evaluate the problems faced by health and social care workers while
delivering care to autistic children
 To analyse the impact of caring for autistic children on the health and wellbeing
of the carers
 To device strategies that will help in better support to the carer of such children
LITERATURE REVIEW
DePape, and Lindsay, (2015) in their research evaluated the profound impact of autism
spectrum disorder on the life of the family, including the roles and responsibilities of the
parents caring or such children. The research used thematic analysis to extract the
patterns and found six themes that related to the challenges the parents face during
caring for autistic children. The themes emerged as pre-diagnostic stress, diagnosis,
family life adjustments, and parental empowerment, navigating the routine, and coping
with daily problems. This research concluded that various problems are faced by the
parents of autistic children that make them have a low-quality life with physical and
mental health issues; lack of support is identified as a major aspect that leads to so
many challenges in parent's lives.
Another research by Mount and Dillon, (2014) surveyed nine parents of children with
autism that were in a school and recruited for the research. Individualized semi-
structured interviews of these parents were recorded, transcribed, analyzed and
recorded with thematic analysis and content analysis. The findings revealed the
following themes that emerged as difficulties that parents faced with their autistic
children. The findings were the problems faced during care impacted on their
relationship, impact on their health, lack of support, coping strategies, school issues and
stress regarding the future. The instances were recorded where the relationship
between was affected due to overburdened care and the effect was also evident on the
family outcomes. This research identified that area of challenges that parents face while
caring for their autistic child not only affects their family outcomes but also impacts on
their overall functioning physically, mentally and emotionally.
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Feeding is also a very big problem with autistic children. Parents usually report facing
barriers while feeding their children. The study by Rogers, Magill-Evans and Rempel,
(2012) evaluated the challenges that are presented during feeding the children. 11
mothers of children with autism with an age range of 4 to 11 years were surveyed.
Majority of them reported behaviour challenges during the efforts of feeding their
children. The study revealed that the mothers developed a path to overcome these
challenges and developed a pattern of feeding their children through different
interventions. It reveals how feeding is an important part of life and children with autism
show severe restriction and behavioural challenges during the daily routine tasks that
cause the parents to face difficulties managing up their daily life.
METHODOLOGY
According to Naslund (2002), research methodology is the plan that the knowledge
gained by studying a concept for the chosen topic. Research methodology is the plan of
research that is followed by the author to formulate the research. It consists of the
method of how the research is being followed and the stepwise formation of the whole
plan. There are two methods of conducting research that is primary and secondary.
Primary researches are the one that uses the first-hand data by means of interviews,
questionnaire, survey, experiment etc. the secondary research whereas is the study
where preexisting data is used to formulate a literature review or academic review that
allows the researcher to find new interpretations from already existing data. This
research is mixed as it has aspects of primary as well as a secondary study (Flick,
2018). The method used for the primary study is a questionnaire survey with selected
parents caring for autistic children. The secondary research includes a literature review
that is done by searching the databases for relevant articles, journals and researches.
The advantage of mixed research is that the data received is al saving fresh themes as
well as it has old patterns in it. It is easy for the fresher to do the research and
consumes less funding and resources.
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The method of research can also be classified on basis of qualitative and quantitative
nature. A qualitative study is that where the data collected is any subjective in nature
and do not contain any numerical or statistical values. Quantitative data is the one
where numerical data and variables are analyzed and used to conclude the findings of
the research. This study will be qualitative in nature as it will use the subjective data to
perform the analysis on and formulate the themes to reach the conclusion for the study
(Silverman, 2016). Qualitative research is easy to carry on as it contains patterns of
themes and subjective elements that are not difficult to extract from the data.
THEORETICAL PERSPECTIVE
Theoretical perspective for the research is the theory that is used to approach the study.
There are various theories that can be used in different researches as per the nature of
the data collected in it and the nature of its design. The theoretical perspective used in
this research is an interpretive theory. It is a general category of the theory that
incorporates labelling, symbolic interaction, phenomenology and sociological framework
of constructive reality. Interpretive theory is best suitable here as the data is collected by
means of questionnaire and survey. Interpretative theory accepts free will and also
mentions the behaviour as the outcome of the subjective interpretation of the
environment. The interpretive theory will allow me to study the prevalence of autism and
understand the challenges that parents face during caring for them (Ritchie, Lewis,
Nicholls, and Ormston, 2013).
DATA COLLECTION METHOD
Data collection is the process of gathering data from different sources that are used to
formulate the research. It is also referred to as the type of data collected and the means
by which the data is collected as per the nature of the study. There are primarily two
basic methods of data collection that is primary and secondary. The primary data is
collected by means of experiments, surveys, questionnaire, interviews etc. this method
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is used when primary research is carried on. The secondary data is collected from the
already existing literature on the topic (Taylor, Bogdan and DeVault, 2015). A literature
review is a process where data is collected from the primary preexisting researches and
articles. In this research, the primary data will be collected by means of a written
questionnaire that will be provided to 20 parents caring for autistic children. The
secondary data on another hand will be collected from the databases like Google
Scholar, PubMed, and Medline etc. The keywords that are autism, parents, caring,
challenges, healthcare professionals and children are fed in the database to yield
relevant information and literature. The results are then sorted with help of inclusion and
exclusion criteria set for the study and most appropriate researches are used to form
the literature review.
QUESTIONNAIRE
The id of the family
Age of child
Contact no.
Q1)
How long it has been that your child diagnosed with autism spectrum disorder?
Answer)
Q2)
What was your first reaction towards the diagnosis of your child?
Answer)
Q3)
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Do you face difficulty coming up with the needs of your child?
Answer)
Q4)
What are the major challenges you face during caring for your child?
Answer)
Q5) Did you ever feel like unsupported or alone while the care process?
Answer)
Q6) What is the main impact of these challenges on your life?
Answer)
Q7) How do you cope with these problems on daily basis?
Answer)
Q8) What are the strategies you think should be devised to have better service
accessibility?
Answer)
Q9) Do you feel stressed regarding your child’s future?
Answer)
Q10) Some recommendations you want to provide for better policies for your children?
Answer)
SAMPLING TECHNIQUE
Sampling is defined as the method of selecting an appropriate population to conduct the
survey or research (Ritchie, Lewis, Nicholls, and Ormston, 2013). The sampling can be
done in a different manner as per the research requirement for this particular research
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the target population chosen is the parents of autistic children in the UK. 20 families
were selected by simple random sampling to participate in the survey conducted with
help of a written questionnaire. The sample size is chosen to be enough to rely on and
extract basic themes to answer the research question. Also, the sampling is done by
this method to make it free of bias and choose the willing informed participants for the
survey.
DATA ANALYSIS
Data analysis is the process where the collected data is being analyzed and evaluated
to find the relevant details that can be used to form a conclusion. Data analysis is done
by using various analyzing tools. In this research, the author has used correlational
analysis to analyze the data. The correlational analysis is the tool used for comparing
and relating two variables together. The variables in the research based on numerical
data and objective data is being selected and is compared with each other to find the
conclusions (Tesch, 2013.). This analysis is useful when the possible relations between
the variables are to be established. It is used to evaluate the relationship between the
continuous variables and strength of the relationship between those two variables. It
allows the researcher to collect more data than experiments, whereas it can only
uncover the relationships between the data and variables but cannot draw a direct
conclusion out of it. It is used here as the analysis tool as it is a useful pointer for the
further scope of detailed research.
TEMPORAL RESEARCH PLAN
ACTIVITIES We
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Decide on
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Research
question
Introduction
Background
Aim
Objectives
Literature
Review
Methodolog
y
Sampling
Data
Analysis
Data
presentation
Request
permission
Consent
letters for
participants
Written
questionnair
e
Participants
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responses
Complete
proposal
Submit
proposal
Formative
feedback
ETHICAL CONSIDERATIONS
Ethical consideration refers to the standards of confidentiality and security that are
implemented during the conduction of research to safeguard the participants. Ethical
consideration includes the safety precautions to be taken to safeguard the human
subject participating in the research as well to keep their details and information
enclosed and confidential (Maxwell, 2012). As the research is having a primary
component and uses written questionnaire the study will provide a signed and well pre-
informed consent from the participants. The consent will inform the participants
regarding the whole research and information that they will provide for the research.
The consent will also have a declaration and assurance that the information provided by
the participants will only be used for research purpose and will not be disclosed and will
be kept confidential at any cost. The signed consent forms will be taken from the
participants before conducting the research also their child's identity and their identity
will be kept confidential. The results of the questionnaire will not be distributed and the
copies of the written questionnaire will be provided to the participants.
REFERENCES
Ludlow, A., Skelly, C. and Rohleder, P., 2012. Challenges faced by parents of children
diagnosed with autism spectrum disorder. Journal of health psychology, 17(5), pp.702-
711.
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