“Giving a voice to unheard parties”: Parents’ perceptions of early interventions for their children with autism

(Photo provided by Brooke Tracy)

“When my supervisor proposed this project to me, I was immediately intrigued to hear, in open-ended form, how parents felt about the programs their children were in. Giving a voice to unheard parties involved in a service is something I take pleasure in.” ~Brooke Tracy

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*In the following interview, TS refers to The Synapse and BT refers to Brooke Tracy;

TS: Could you briefly introduce yourself, your supervisor, the topic of your thesis, and the field it contributes to?

BT: I’m Brooke Tracy and I am in my first year of the Clinical Psychology (MA/PhD) program at UNB. I also completed an honours thesis in psychology at UNB for my Bachelor of Arts. My supervisor was Dr. Barbara D’Entremont, and the title of my thesis was “Parents’ perceptions of an early intervention for their preschool-aged children with autism”.

This work applied broadly to the field of autism spectrum disorder interventions and the importance of parent perspectives when evaluating available resources for their autistic children.

TS: What was the inspiration for your study, your research question, and the main results?

BT: First, there are a few things you should understand about autism:

1) autism spectrum disorder is a neurodevelopmental diagnosis typically identified by social, communicative, and behavioural abnormalities of varying severity;

2) a strong basis exists for the effectiveness of Early Intensive Behavioral Intervention (EIBI) for children with autism as opposed to interventions later in life; and

3) most regions in Canada and the U.S. offer publicly funded early interventions for children with autism.

Early interventions are rarely evaluated using parent perspectives despite some research suggesting that parental factors (e.g., low stress and high self-efficacy) are associated with better child outcomes. Moreover, few studies on parent perspectives employ a qualitative approach.

We investigated how parents felt that aspects of an EIBI program for their children influenced parental factors. Specifically, we asked parents to respond to open-ended questions regarding what program aspects decreased stress and were most helpful, as well as what aspects increased stress and were least helpful.

Some key themes parents identified that reduced stress and were most helpful included:

1) program design and child improvement;

2) parent learning, understanding, and confidence; and

3) receiving support, comfort, and validation from the team.

Aspects parents felt increased stress and were least helpful included:

1) program design and implementation; and

2) burdens on family and feeling unheard.

TS: Could you provide a brief summary of the methods and experimental procedure used in this study?

BT: Data were collected from parents with children in an EIBI program in two Canadian provinces (New Brunswick and Nova Scotia) in survey form; responses to the qualitative portion of the survey were examined in our study. A total of 485 parents of preschoolers with autism provided data for the survey, but demographics were collected from only 405 of those participants. Qualitative responses were collected one year after intervention and upon child entry into school.

A thematic analysis was conducted in NVivo 10 software using Braun and Clarke’s (2006) framework, involving a set of steps:

1) becoming familiar with the data;

2) creating initial ‘codes’ (labels used to organize the different responses);

3) searching for themes;

4) reviewing the themes;

5) defining and naming the themes; and

6) producing a report based on the key themes.

Responses to the open-ended survey questions were placed into one of two categories for coding:

1) responses to questions concerning what program components reduces stress and were most helpful;

2) responses to questions regarding what program aspects increased stress and were least helpful.

Additional comments were coded into the above categories as appropriate. Responses were coded separately by time (i.e., T1 and T2) and province (i.e., Province 1 and Province 2).

TS: Are there any future studies that will be conducted based on your method or results?

BT: I find this a tough question to answer. One of the most exciting parts of research is that it is never finished unless interest in a particular topic is lost. While I am still interested in autism research and child psychopathology broadly, my primary areas of interest are cultural psychology and sociocultural influences on children and youth. Thus, I chose a supervisor who matches this area of research for my doctoral studies and am unlikely to continue research based on my BA thesis.

However, I would love to see others conduct autism research that considers parent perspectives on early interventions for autism. There has been a general push for a more holistic approach to child psychopathology that involves the roles of each family member and multiple, interactive contexts in the child’s life. Including parent perspectives is one key piece of that approach.

TS: What would you consider the most intriguing part of your research? What led you to choose to pursue this project?

BT: I find it intriguing how diverse the perspectives of various service providers and service users can be. I also find it incredibly important to consider the voices of all parties involved in a service during its creation, implementation, and evaluation. I think hearing this diversity in perspectives allows for a greater capacity to make services optimal for everyone involved. Along with that is the importance of ensuring clear and efficient lines of communication between all parties involved in that service - this is called ‘knowledge transfer’.

When my supervisor proposed this project to me, I was immediately intrigued to hear, in open-ended form, how parents felt about the programs their children were in. Giving a voice to unheard parties involved in a service is something I take pleasure in.

TS: Is there anything else you wish to share about your research experience?

BT: There is so much I could say. I think I will simply recommend to, as best as you can, stay calm and relaxed. Pray. Practice mindfulness. Take breaks. It is so easy to become stressed and anxious when it feels there are a million expectations of you. They can wait. I got just as much done working 9-5 and taking evenings off as I did working 24/7 because I was giving my brain and body the rest it needed. This is easier said than done when you are in the middle of it, but so helpful in the long run.

If you have any specific questions pertaining to research, honours, or anything else, my email is brooke.tracy@unb.ca. I would be happy to chat and help you out! :) Ψ