Transcript Slide 1

A MIXED METHOD ANALYSIS OF PARENTS' EXPERIENCE OF
RAISING A CHILD WITH SEVERE DEVELOPMENTAL DISABILITY
Nidhi
Background
•Raising a child with Developmental Disability (DD) or Autism Spectrum Disorder
(ASD) is challenging for most parents. The results of past quantitative and qualitative
studies indicate that parents experience negative impact (e.g., parental distress,
depression, financial burden) due to factors such as child's diagnosis and
maladaptive behavior (Bishop et al., 2007; Blacher & Baker, 2002).
•In the past two decades, based on parents' qualitative comments, researchers have
reported that most parents also report positive experiences with their child (Blacher &
McIntyre, 2006). Most of the early literature on positive impact was qualitative in
nature, and the field gained a quantitative focus only in the last 10-12 years (Trute et
al., 2010).
•Although there is ever growing literature in this field of research, few studies in
Canada have looked qualitatively at parents’ report of their experience of raising a
child with a DD or ASD, in relation to their child's diagnosis and gender.
Purpose and Research Questions
The purpose of the current study is to conduct a qualitative thematic analysis of
parents' responses to an open ended question about their experience in raising their
child with a disability.
Using exploratory mixed methods design (Creswell & Plano-Clark, 2007), this study
will explore two research questions:
1. How do parents articulate their experience of raising a child with DD?
2. Does their reported experience differ based on:
• Child's diagnosis (ID versus ASD)
• Child's gender
1
Luthra ,
1
Perry ,
2
Minnes
Adrienne
& Patricia
1 York University, 2Queens University
Results
• A total of 29 themes emerged from the qualitative thematic analysis of parents’ responses, and included negative, positive and neutral themes.
• 30% of parents reported both positive and negative experiences, while 54% reported negative only and 9% reported positive only experiences
Negative Experiences
• Of the 29 total themes, 18 themes emerged that indicated negative experiences reported by parents, which were further grouped into four meta themes
“It has been extremely challenging”
“My husband and I usually take separate vacations and we cannot go where we
want to together”
“I want to continue keeping her at home with us, but worry about where she will go
when we pass away or are no longer healthy enough to take care of her”
Difficult / stressful / hard
33%
Making sacrifices & accommodations
13%
Ongoing challenges on journey
13%
Worry about future
10%
Decision making and future
planning
Difficulty with self care
13%
Informal-Formal supports &
services
Exhaustion
12%
Stress in family relationships
10%
Helplessness / desperation
7%
Career disruption
6%
Being a single parent
6%
“We have found that schools and community in general are very discriminative of
families with special needs children. Not all disabilities are readily visible and we have
been excluded from social functions including family events/parties because of our
child’s disabilities”
“ Raising a child with a severe disability is a huge burden on the entire family in the
current support environment, I think the most difficult thing is the isolation- nobody
wants to invite us over because it is not very relaxing”
Percentage of parent reports of negative
meta-themes
Secondary analysis on data from Great Outcomes for Kids Impacted by Severe
Developmental Disabilities (GO4KIDDS) Basic Survey (Perry & Weiss, 2009).
Sample:
Diagnosis of Children
DD = 92
ASD = 112
N = 204
Age of children = 3-20 years
Gender of Children
Male = 139
Female = 65
Measures (From GO4KIDDS survey)
•Qualitative data came from the following question on the GO4KIDDS survey
"Please add any overall comments about any aspect of raising a child with a
severe developmental disability"
Neutral Experiences
Data Analysis
•Qualitative Thematic analysis conducted with a group of graduate students until point of
saturation (97 participants). The first author then coded the rest of the comments using
the coding theme determined.
•Overall percentage of parents whose comments fell into each theme will be reported.
•2 analysis done with a subsample found mostly non-significant differences between
gender or diagnostic groups. Hence only overall themes will be reported.
Acknowledgments
Thank you to all the parents for completing the Survey, and all the Research
Assistants involved in the study. A special thank you to the students in Dr.
Perry’s lab at York University for their help with initial coding of the data.
Data for this study were collected as part of the CIHR Team: GO4KIDDS: Great
Outcomes for Kids Impacted by Severe Developmental Disabilities, Nominated
Principal Investigator: Adrienne Perry, York University. (www.go4kidds.ca)
“It’s a club you don’t want to join, but once
you’re in there, there is some comfort in
knowing other people are with you, and
there are always people in more difficult
circumstances”
54%
Stressors
“As a single parent I feel quite isolated and would like to have another partner someday,
but have difficulty finding time for myself”
Perspective on life
Negative reaction to child in society
13%
Social isolation
9%
Lack of support from family
8%
58%
Effect on self and family
“Some days it hurts everywhere, heartbreak”
• 2 main themes emerged for
statements that were neither overly
positive or negative
29%
Managing needs of child
“It is extremely hard, only one member of the family can work, somebody has to take
care of the child at all time”
Methods
70%
Frustration with formal services
40%
Child difficulty
“The love that I have for my son is
overwhelming – I must remind myself on
how far we have come, how much we have
sacrificed – to strengthen my resolve to
keep going, that I am doing the right thing.
An exhausting labour of love”
9%
Financial difficulty
7.5%
Managing needs of multiple children
7.5%
“I have 3 children with special needs and 2 of which have severe developmental
disabilities. It is very difficult at times, but its really all I know how to do”
“Everything has been left to the family – I have to be researcher, OT, PT, dietician,
teacher, SLP”
“Financial costs are very difficult. We have a good income yet it costs a lot of
money for respite/child care”
Positive Experiences
•9 themes emerged that indicated positive experiences, which were further grouped into 3 meta themes
Percentage of parent reports of positive
meta-themes
Attitude towards child
Attitude towards life
30%
17%
Celebrating child’s success
6%
Loves child
5%
Child as a blessing
5%
Positive child attributes
5%
Acceptance of child
1%
Rewarding
Identity as a parent
16%
Supports and services
11%
Supports and services
“The reason why my stress levels are down is because i
have hired a lot of support to help keep me sane and able
to cope with everyday life”
Appreciation of life
11%
6%
Family cohesion & support
5%
Helpful services
5%
Attitude towards child
“We have been blessed and
privileged to raise her. It is
overwhelming at times when we
stop to see her
accomplishments amidst her
limitations”
Attitude towards life
“Raising a child with autism
makes life interesting. You never
really know what the future will
hold but you pray and hope for
the best and you tend to do
everything you can”
Discussion
•The majority of parents reported negative experiences when raising a child with a developmental disability, but many also talked about positive aspects
of this experience.
•The most common experiences reported by parents were in the area of making everyday life decisions based on the child’s needs and having to
accommodate everything else in their lives around their child.
•Almost 1/3rd of parents also reported positive attitudes towards their children such as celebrating their achievements and loving their child in spite of the
challenging times.