A MIXED METHOD ANALYSIS OF PARENTS' EXPERIENCE OF RAISING A CHILD WITH SEVERE DEVELOPMENTAL DISABILITY
Nidhi Luthra1, Adrienne Perry1 , & Patricia Minnes2
1 York University, 2Queens University
- 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:
- How do parents articulate their experience of raising a child with DD?
- Does their reported experience differ based on:
- Child's diagnosis (ID versus ASD)
- Child's gender
- 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
“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”
“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”
“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”
“It is extremely hard, only one member of the family can work, somebody has to take care of the child at all time”
“Some days it hurts everywhere, heartbreak”
“As a single parent I feel quite isolated and would like to have another partner someday, but have difficulty finding time for myself”
- Secondary analysis on data from Great Outcomes for Kids Impacted by Severe Developmental Disabilities (GO4KIDDS) Basic Survey (Perry & Weiss, 2009).
- N = 204
- Age of children = 3-20 years
- 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"
- 2 main themes emerged for statements that were neither overly positive or negative
- 9 themes emerged that indicated positive experiences, which were further grouped into 3 meta themes
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”
Perspective on life
- “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”
- 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.
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”
Identity as a parent
“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”
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”
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)
- 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 1/3rdof parents also reported positive attitudes towards their children such as celebrating their achievements and loving their child in spite of the challenging times.