Why research this topic?

We know that many people with disabilities do well in life. Little is known, however, about the processes people go through and the assistance that is useful at key points in life. This study asked 15 people with non-progressive, chronic conditions to look back on their lives and identify key turning points and factors that helped and/or hindered them at these critical periods.

Who looked at this topic?

Gillian King, Tamzin Cathers, Liz MacKinnon, Lisa Havens, Linda Smith, and Liz Brown (from Thames Valley Children's Centre) collaborated with Jacqui Specht (from Huron College), Jan Miller Polgar (from University of Western Ontario), and Colleen Willoughby (from Child and Parent Resource Institute) to study people's resilience in life.

What was done?

We interviewed 6 women and 9 men - 5 people with cerebral palsy, 4 people with spina bifida, and 6 people with attention deficit disorder. Their ages ranged from 28 to 53 years of age, with an average age of 37 years. In the first interview, participants identified the key turning points in their lives. In the second interview, people talked about the meaning and effects of the turning points, and factors that helped (or hindered) them at those times. The interviews were transcribed and shared with study participants.

We carefully read over the transcripts and generated a list of all the key ideas that were discussed. Codes were assigned to each idea (about 1,400 of them). These codes were then applied to all relevant parts of the interview transcripts. To make sure we applied the codes consistently, two researchers individually applied the codes to the same part of an interview and then compared the codes they had used to ensure they had agreement. As we looked at the codes, we started to see similar themes emerging. We invited participants to meet with us to discuss these themes (or key ideas) and check the accuracy of them. The participants confirmed the accuracy of the themes and provided valuable additional information about specific recommendations they would make regarding each key theme area.

What was found?

The participants clearly articulated factors that helped and hindered them through turning points (i.e., life-changing events and/or realizations).

Major Helpful Factors:

• The assistance of others
• Their abilities, beliefs, and characteristics
• Medications and remedies
• Receiving a diagnosis
• Services received
• Opportunities and experiences in life
• Devices (e.g., computers and wheelchairs)

Major Hindering Factors:

• Lack of support from others
• Attitudes, beliefs, assumptions, and behaviours of others
• Government policies regarding disability pensions

What should be done?

The participants in the interviews and in a survey made recommendations for services, systems, and society.

How service providers should treat children with disabilities (and their families):

• LISTEN to people with disabilities; listen to the opinions of their parents
• Speak directly to the children themselves and choose your words carefully
• Deal with the family as a whole
• Provide services with acceptance and respect
• Focus on individual needs because each person is different
  

The nature of services required:

• Support parents of children with disabilities to encourage their child's independence
• Encourage opportunities for children to know others with similar disabilities, as well as those without disabilities
• Provide vocational guidance (help people set realistic job goals)
• Ensure services extend beyond childhood, are centralized, and accessible
• Provide services that help people prepare for adulthood
• Provide programs that will help in all aspects of life
• Provide information to ensure that people know of available services
• Employ people with disabilities as service providers so they are visible role model
  

Education for the general public:

• Educate the public regarding disabilities in order to dispel myths, such as assuming that having a disability means having a low IQ
• Encourage community members to personally get to know people with disabilities
• Encourage the public to treat people with disabilities in the same way as they treat others

What does this mean?

The descriptions of helpful/hindering factors and the study recommendations will help service providers ensure supports and services are available at critical periods in a person's life. What was learned from participants' stories should help break down myths and attitudes that support the idea that people with disabilities are "different." As the participants said:

"People with disabilities are just like everyone else."

"Remember the person is an individual first and disabled second."

"We are people. We have feelings, hopes, desires, and needs like everyone and what we need most is acceptance and support, financially and emotionally."