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RESEARCH PROPOSAL FOR SUBMISSION TO REVIEW AUTHORITY FOR

RESEARCH

Title of the Study: Perceived Stress and coping strategies in parents of children with Autism
Spectrum Disorder (ASD)

Period of study: JUNE 2018-SEPTEMBER 2108

Background and Rationale of the study

According to American Psychiatric Association, Autism spectrum disorder (ASD) is a


complex developmental disorder that can cause problems with thinking, feeling, language
and the ability to relate to others (Lai, Goh, Oei, & Sung, 2015). Parenting which is a
wonderful and rewarding experience, is often accompanied by high levels of stress, because
of the difficulties, frustrations, and challenges that parents face in everyday life. Having a
child with developmental disabilities brings life changing implications and long-lasting
effects in the life of the whole family (“Fathers-and-mothers-perceptions-of-father-
involvement-with-young-children-with-a-disability.pdf,” n.d.)

Parents of children with ASD suffer from higher amount of stress compared to parents of
children with other disabilities (Davis and Carter, 2008). Parents who experience higher
levels of stress interact differently with their children, and they respond differently to their
child’s problematic behavior (Hayes and Watson, 2013). In the process to overcome the
stress, these parents might voluntarily or involuntarily utilize certain coping strategies which
can be maladaptive or adaptive. Eventhough India lacks accessible high quality ASD
management facilities; there are still certain facilities (training schools/hospitals) available in
our country to manage children with ASD. Therefore, moving to the next level of
management that is, considering issues of parents of children with ASD and the factors
associated with it is vital.

Objectives of the study

Major objectives

• To assess the level of stress in parents of children with ASD

• To examine the factors associated with stress in parents of children with ASD

• To find the coping strategies used by parents of children with ASD

Minor objectives

• To assess the psychometric properties of perceived stress scale 10-Malayalam version


Methodology

a. Study type/design: Cross sectional survey

b. Study setting: Place and people involved and its justification/limitations:

The study will be conducted among Parents of children with ASD who have a child taking
treatment or training in any of institutions like Child Development Center (CDC), National
Institute of Speech and Hearing (NISH), Sree Chitra Tirunal Institute for Medical Sciences
and Technology(SCTIMST), Buds school Venganoor and Malayalamkeezhu, Center for
Mental Retardation (CIMR) will be taken for the study. CDC, National Institute of speech
and hearing and Sree Chitra Tirunal Institute for Medical Sciences and Technology are the
three pioneer institutions in Kerala which diagnoses ad treats majority of children with
developmental disorders. Kudumbashree initiated Buds school as Disability Mainstreaming
Program in 2004 . Center for Mental Retardation (CIMR) is a national level NGO in Kerala,
founded in 1980 is one of the first institutions for education, training, development and
rehabilitation of the mentally challenged.

c. Sample size: estimation and justification

Approximately 100 samples will be taken .As per the records in the 5 institutions;
approximate numbers of children with autism were recorded. Accordingly sample size was
calculated. As there was no common Autism registry for State of Kerala or district
(Trivandrum) this strategy was utilized.

d. Sample selection procedures:

1)Selection of schools

Three institutions providing treatment for Autistic children and two training schools were
selected for the study assuming that most of the children with autism in Kerala are taking
either treatment/training in these institutions.

2) Selection of study participants

• Parents who have Children in the age group of 1-18 years will be selected.

• Parents who consent for the study will be taken up for the study.

e. Data collection techniques

Data collection will be done by the principal investigator between June - September 2018.
• Interview schedule which measures perceived stress, factors related to stress and
coping strategies will be administered to the participants

1)Perceived stress scale-10

The Perceived Stress Scale (PSS) is a psychological instrument for measuring the perception
of stress. It is a measure of the degree to which situations in one’s life are appraised as
stressful. The questions in the PSS ask about feelings and thoughts during the last month.
Items were designed to tap how unpredictable, uncontrollable, and overloaded respondents
find their lives.

2) Questions on factors related to stress

Questionnaire on factors related to stress includes questions on sociodemographic


information including family tree, child characteristics, concerns about the child, social
support/cohesion, family expenditure, family roles and responsibilities. One part of the
questionnaire has open ended questions on parental perception about autism, its causes and
effects of autism in parents. These questions are included as it will introduce the issue of
stress to the parent and they will open up about the real problem which will supplement the
quantitative information collection in the interview schedule.

3) Questions on coping strategies

Coping strategies are divided into problem focused strategy and emotion focused strategy
(Carver et al., 1989). Questions on coping strategies in this interview schedule focuses mainly
on “emotion based coping strategies”. Emotion based coping strategy was chosen because as
the sample is taken from a training school/health facility they are already seeking
instrumental support which is a problem based coping strategy.

Variables used in the study

1. Dependent variables

Levels of stress

2. Independent variables

Sociodemographic variables, child characteristics, expenditure on child’s treatment, family


roles and responsibilities, social support/cohesion , emotion focused coping strategies.
f. Plan for data collection and analysis:

STEP 1: IDENTIFYING PARENTS

Parents will be contacted with the help of school principal/head of institution in training
schools. In treatment facilities, Parents who accompany their children for treatment will be
approached to participate in the study.

Subject information sheet and consent form will be given to the parent. If any parent is not
willing to participate in the study, the next eligible child’s parent will be selected.

STEP 3: DATA COLLECTION

On receiving the consent, each question from the interview schedule will be asked to the
parent in the same order. The consent form and questionnaire will be collected for analysis.

STEP 4: DATA ANALYSIS:

Data cleaning and analysis will be done by the principal investigator. In this study, the
outcome variable is level of Stress in parents of children with Autism. Univariate and
multivariate analysis will be done. Family tree will be analysed by deductive coding, the
codes being: sex of the child, presence of siblings, consanguinity etc. For open ended
questions, codes are : cause of ASD for child, severity of ASD, effects of ASD on parents.
Deductive coding will be done for analysis.

Expected outcomes:

SHORT TERM DELIVERABLES

We can find the overall level of stress in parents of children with autism. The difference in
stress levels according to sociodemographic features, child characteristics, expenditure for
child’s treatment, concerns about the child, social support can be found. Also we can examine
the coping strategies mostly used by parents of children with ASD. The open coded questions
on autism and its relation with parents will supplement the information collected the
questionnaire.

LONG TERM POLICY IMPLICATIONS

 Incorporation of policies for parents of children with ASD (eg: reimbursement of


salary for the days they come to health facility) in existing govt. programs/policies

 Policies for ensuring the guardianship of the child with ASD


 Programs for stress management, family relationships with existing treatment
strategies for Children with ASD

 Educational subsidies for siblings of child with ASD

h. Ethical considerations:

Participation in the study is made purely voluntary. Services that the child has been receiving
from the institution will not be affected in anyway. There are no direct benefits for the study
participants from the study. This is mentioned in the information sheet provided to
participants. For parents of children with ASD, the questions asked may cause distress for
them. Parents may think more about their issues due to probing. For this, trained
professionals are available in selected institutions. In addition, a social worker who is
experienced in working with families with children with developmental disorders and life
limiting illness is also available for help. Data collected will be strictly kept confidential.
Personal identifiers will not be used for analysis or at any stage of the study.

Project Management

a. Staffing and work plan:

The principal investigator will be collecting the data from the participants from June 2018-
September 2018. No other investigators will be employed.

b. Plan for dissemination:

The respective institutions/training schools that were a part of the study will be informed
about the conclusions of the study. Efforts will be taken to publish the paper in academic
journals after completion of the study.

c. Data storage and transfer and management:

Data will be safely locked and stored in lockers. Data will be handled only by the principal
investigator and will be stored for 5 years after the study period. Data will not be shared with
anyone during this time period.

Budget:

External funding will be requested from Kerala State Science, Technology and Environment.
If funding is not available, the expenditure will be met by the principal investigator. Still the
approximate cost of the study is stated below.
Net Budget for the study:

Sl no Activities Rate Total

1 Printing consent forms and interview Rs 1 per page 2000

Schedule

2 Travel expense 10,000

3 Stationaries 2000

4 Phone 800

5 Contingency 5000

6 Printing hard copies of the report and Rs 850 per one copy 10200
binding

Total 30,000

BIBLIOGRAPHY

1) Carver, C. S., Scheier, M. F., & Weintraub, J. K. (1989). Assessing coping strategies: a
theoretically based approach. Journal of Personality and Social Psychology, 56(2), 267–283.

2) Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers
with autism spectrum disorders: associations with child characteristics. Journal of Autism and
Developmental Disorders, 38(7), 1278–1291. https://doi.org/10.1007/s10803-007-0512-
3)Fathers-and-mothers-perceptions-of-father-involvement-with-young-children-with-a-
disability.pdf.(n.d.).Retrievedfrom
https://www.researchgate.net/profile/Bruce_Baker2/publication/261679904_Fathers%27_and
_mothers%27_perceptions_of_father_involvement_with_young_children_with_a_disability/l
inks/0a85e5361a45e775d0000000/Fathers-and-mothers-perceptions-of-father-involvement-
with-young-children-with-a-disability.pdf
4) Lai, W. W., Goh, T. J., Oei, T. P. S., & Sung, M. (2015). Coping and Well-Being in
Parents of Children with Autism Spectrum Disorders (ASD). Journal of Autism and
Developmental Disorders, 45(8), 2582–2593. https://doi.org/10.1007/s10803-015-2430-9

5) The Impact of Parenting Stress: A Meta-analysis of Studies Comparing the Experience of


Parenting Stress in Parents of Children With and Without Autism Spectrum Disorder |
SpringerLink. (n.d.). Retrieved April 17, 2018, from
https://link.springer.com/article/10.1007%2Fs10803-012-1604-y