Research study of seven families with children with disabilities

In 2009, a research study was conducted through McMaster University, of seven families with children with disabilities. This study was presented at the Smile. dinner in June of 2009. The following is a summary of this study.

Introduction:

This study presents a detailed exploration of seven families’ experiences of being a Muslim caregiver for a child with a disability, and accessing services for their child in the Peel region of Ontario. The investigators looked specifically at the various physical, religious, cultural and psychological barriers and supports involved in this process. The aim was to provide information on the specific experiences of this minority group as there is limited research literature available in this area.

Research Question:

What is the lived experience of Muslim families who have children with disabilities in accessing healthcare and community services?

Study Design:

A qualitative phenomenological study was considered to be the most appropriate method in which to study the lived experiences of these families.

Participants:

7 families (total 9 participants). Inclusion criteria:

• Muslim parent of guardian of child with a disability
• Living within the Peel region of Ontario
• Able to communicate in English

Data Collection:

Semi structures interviews were conducted with participants. These were audio recorded and transcribed verbatim.

Data Analysis:

26 codes were identified using the coding process of Miller & Crabtree (1999). From the list of codes, categories were developed and defined. Main themes were obtained through a process of collaborative exploration and immersion within the data.

Results:

Six themes were identified from the data analysis and are described below:

Theme1 – Managing Day-to-Day Challenges: captures the struggles that participants encountered on a daily basis. It demonstrates how raising a child with a disability affects every aspect of their day-to-day interactions and communications.

“He [child with a disability] is growing up and is getting taller and he is gaining [weight] he is almost ten years old and… I have to lift him and this is very difficult for me”

Theme 2 – Experiencing Disability by proxy: depicts participants experiences of prejudice, social isolation, and lack of understanding from individuals in the community as a result of having a child with a disability. These experiences lead to the whole family being emotionally, socially, and physically marginalized.

“Nobody, even once said, if you have any trouble, we are here!”

Theme 3 – Navigating the Healthcare System: demonstrates the various interactions between the participants, service providers and healthcare professionals, as well as the barriers faced when accessing different services for their child with a disability.

“When they [health care professionals] tell me, I don’t understand, so I have to [find] somebody to come with me”

Theme 4 – Struggling to Integrate into the Community: speaks to the challenges participants face when attempting to integrate their child, and family into the different spheres of society including schools, day care, community centres, religious institutions and cultural events.

“…I have found three masjids that are wheelchair accessible. Wheelchair accessible doesn’t mean that you are comfortable there. You can physically go, but when you go in you will get comments… ‘Leave the wheelchair out its not allowed because it’s not clean’. They can walk in with their dirty feet but I have cleaned the wheelchair. So sometimes people they block me [and say] ‘haven’t you heard me, wheelchair cannot go in’. And at that time I have to stop and say ‘You know these wheels are like his legs. Can I tell you to leave your legs at the door?”

Theme 5 – Discovering Ways to Cope: highlights the various strategies used to cope with the challenges of raising a child with a disability. These include turning to God and religion and being empowered through knowledge.

“When you get something from God you’re supposed to be grateful for that and sometimes it’s a test and you have to be patient, you’re supposed to be thankful and God has created differences between different people, which you are supposed to accept.”

Theme 6: Gaining and Giving up Support: emphasizes the trade-off that many participants, who were immigrants, often had to make when moving to Canada to receive better health care services for their child with a disability. Several participants spoke about having to leave behind the informal support they received in their home country for the more formal health care opportunities available to them in Canada.

“ Back home we have our family members so we know somebody is there if you want to go out you know somebody is there but it is not like this kind of service [formal health care services]”

Summary of Key Findings:

Muslim Families with children with disabilities in this study:-

• Face stressful day to day challenges
• Have limited informal support and are socially isolated
• Have challenges accessing services for their child
• Often unaware of services available, and benefit greatly when provided with education
• Feel there is a lack of awareness of disability issues in the Muslim Community
• Face physical and social barriers that prevent their participation in the community.

Recommendations for the Muslim Community:

• To increase the overall awareness of disabilities in the Muslim Community
• To ensure Masjids and other Islamic institutions are physically and socially accessible
• To ensure integration and inclusion of children with disabilities into social and religious events
• To connect families with children with disabilities to networks of informal support

Recommendations for Healthcare Professionals:

• To decrease inequality in healthcare provision towards minority populations within Canada
• To incorporate cultural sensitivity into practice
• To provide in-depth education on the services available
• To ensure clients understand the information being provided

Conclusion:

The results have provided important information about the barriers and supports, Muslim families who have children with disabilities, living in the Peel region of Ontario, face in their daily lives and when accessing services. It is hoped that the results of this study will spur both the local community and healthcare professionals to listen to the voices of these families and take action to ensure their needs are addressed

References:

Miller, W., & Crabtree, B. (1999). The dance of interpretation. In B. Crabtree & W. Miller (Eds.), Doing qualitative research (2nd ed.). Thousand Oaks, CA: SAGE.