Information Needs of Parents of Children with Learning Disabilities

Background

My research will explore the information needs of parents of children with learning disabilities. A learning disability (LD) is a condition that affects a person’s ability to receive, process, retain, and communicate information. While most children with LD exhibit average or above-average intelligence, they will nonetheless have challenges learning in a mainstream academic setting that does not or is not equipped to take their differences into account (LDS, n.d.). As a result, students in this position will require extra support in and outside of school to accommodate their learning style and help them develop the tools to succeed. Specific LDs include dyslexia, dysgraphia, and dyscalculia. Language around LD is shifting, and many prefer to use the terms learning difficulty, learning difference, or learning challenge due to the stigma associated with disability. For the purposes of this blog, I will typically use the acronym “LD."

While most children with LD exhibit average or above-average intelligence, they will nonetheless have challenges learning in a mainstream academic setting that does not or is not equipped to take their differences into account (LDS, n.d.).

I originally became interested in pursuing this line of research while working at an LD learning centre. As an administrative support worker, I was responsible for 90% of communications with the parents of our school-aged clients. Anecdotal evidence from these interactions suggested that many parents of children with LD struggle to find the information they need to help their kids. However, there is a lack of Canadian studies considering the information needs and seeking behaviours of this group.

Research Question and Objectives

The purpose of this study is to analyze the information seeking behaviours of parents of children with LD in order to determine the common information needs of this group, the kinds of information sources that are preferred, the barriers that are faced when seeking information, and the types of interventions that might be helpful. The results of the study are intended to be used by professionals in the field (teachers, family doctors, psychologists) to adapt their communication strategies for parents in this group. Additionally, organizations such as public libraries and non-profits could use the results to tailor information intended for this group, or offer targeted interventions for parents during the search process.

The study’s overarching research question is:

What are the information needs of parents of children with LD?

Some of the more specific questions the research aims to answer are:

• What challenges do parents of children with LD face when seeking information related to LD?

• When during information seeking would interventions (by public librarians, teachers, or other professionals) be most helpful, and what might these interventions look like?

• What kinds of information are parents most in need of, and what sources are preferred?

• Is there a disconnect between what professionals in the field perceive to be parents’ information needs and parents’ self-perceived and actual needs?

Literature Review

Relatively few studies have considered this group of information seekers in detail. In selecting additional relevant literature for this study, I focused on research involving the information behaviours of parents with children who have specific needs, whether from learning disabilities or other conditions.

Fathers’ perspectives are highly underrepresented in the selected studies, with many focusing solely on mothers.

The following broad trends emerged from the literature:

1. There is a demonstrated need for information about available services and how to access them (Martinović & Stričević, 2016; Gibson & Hanson-Baldauf, 2019).

2. Some studies show that parents tend to prefer other people as information sources (Pain, 1999; Sciberras et al., 2010; Wang & Lund, 2020).

3. Important barriers to parents accessing relevant written materials include the overuse of inaccessible language/jargon, information poverty (lack of available information), and information overload (too much information, often giving conflicting advice) (Wang & Lund, 2020; Martinović & Stričević, 2016).

The following gaps were identified in the literature:

1. There is a lack of up-to-date Canadian studies on parents of children with LD.

2. As pointed out by (Mniszak et al., 2020), fathers’ perspectives are highly underrepresented in the selected studies (e.g. Pain, 1999)., with some focusing solely on mothers (e.g. Gibson & Hanson-Baldauf, 2019).

3. The majority of studies of this type consider only the perspectives of parents or only the perspectives of professionals (e.g. teachers, psychologists, etc.). No comparative studies could be identified that compare parents' self-described needs with their needs as perceived by professionals in the field.

Methodology

This study will take a qualitative approach. Semi-structured interviews will be used to collect data from two groups of people: parents and professionals. Parents of children with LD will be asked a series of questions aimed at revealing their actual and perceived information needs and seeking behaviour. Professionals who frequently interact with parents in this group, including teachers, doctors, and psychologists, will be asked a series of questions aimed at revealing their perceptions of parents’ information needs. The study will employ nonprobability sampling. I am still trying to figure out the best way to go about recruiting participants. My plan so far is to recruit parents through a handful of participating elementary and high schools in Ontario. School principals will first be contacted by phone and email. With the school’s permission, teachers will be contacted by email, and a flyer will be sent home with students who have LD, asking interested parents to contact the researchers by phone or email. Doctors and psychologists who work with children with LD will be contacted individually by email.

Results will be compared to uncover (1) any gaps in the professionals’ awareness of parents’ information needs, and (2) any areas of need that parents were unaware of or unable to articulate that professionals, perhaps due to an outsider’s perspective, were able to identify.

Two interview guides will be developed. Both guides will contain a series of open-ended questions and a list of potential probes to illicit more descriptive answers. Questions that directly and indirectly address the research question will be used to develop a full picture of parents’ needs. For example, a direct questions might ask: What information do you expect to receive about your child’s LD, and from whom? An indirect question might ask: What can you tell me about your child’s LD or the results of your child’s formal assessment(s) (e.g. psychoeducational assessment)? Responses to the latter type of question may reveal an information need without the parent having directly been asked to describe one. Data from both sets of interviews will be coded using NVivo. A grounded theory approach will be taken, meaning that the themes will be inductively identified from the data. Once both sets of interviews have been coded and high-level themes identified, the results will be compared to uncover (1) any gaps in the professionals’ awareness of parents’ information needs, and (2) any areas of need that parents were unaware of or unable to articulate that professionals, perhaps due to an outsider’s perspective, were able to identify.