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Disability and Developmental Delays

Experiences of families living in rural and remote British Columbia with a child with a disability or developmental delay.

“Parental voices regarding issues of disability and developmental delay in rural and remote communities have been understudied and are therefore under-represented in the literature.”

My name is Mary Stewart and I am currently a graduate student in the Faculty of Education at the University of British Columbia.

I have lived and worked in northern British Columbia for the past sixteen years. I worked for the Infant Development Program of BC an early intervention home visiting program for families who have a child or children with a disability or developmental delay.  Twelve years ago, in addition to my community practice, I became the Regional Advisor for the North which allowed me to visit communities all over Northern BC and other parts of the province training new infant development staff, working with communities and developing resources and networks to support the parents and staff living in community.  An underlying value in all my work of is the concept of family centered practice in that it is the parent that knows their child best and therefore it is imperative that we invite and encourage the voice and experience of parents and families in any work that we do with their children.

As a community person living in a geographically isolated community of 2,000,  I was also acutely aware that many decisions regarding service delivery are made by people who do not live in rural or remote communities and that they may in actual fact have absolutely no experience of what it is like to live in a small community.  They have no knowledge of the benefits as well as the challenges.  Therefore, I thought the best way to influence policy and influence practice was to delve into research that truly captures the lived experiences of the unique population of families who live in rural or remote communities while at the same time raising a child with a disability or developmental delay.

This qualitative study will use ethnographic methodology to conduct 2-3 face-to-face interviews with parents living in rural or remote communities in Northern and Interior Regions of British Columbia.

Initial contact was made with the thirty-two agencies in these two regions that hold the contracts for the Infant Development Programs of BC. Agencies were asked of their interest to participate in a series of studies, this study being one of them.  Nine agencies indicated interest in participating in the research.  These agencies were then sent letters to distribute to the families on their caseloads that fit the following criteria.  To date, one hundred and twelve letters of invitation have been distributed to families on these programs, at the time of submission of this article, no replies have yet been received. 

Study population:

1.      Parents Family lives in a rural or remote community – this was easily identified by having a “0” in the second digit of the postal code or a community with a population under 10,000.
2.      Child is between the ages of 6 months to 47 months – the Infant Development Program serves children from birth up to the end of the child’s third year.
3.      Child has a diagnosed disability or developmental delay – as indentified on the referral form
4.      Parents read and speak English.
 
Research question: 

What are the parenting experiences of parents living in rural and remote British Columbia receiving services from the IDP of BC who have an infant or child under the age of three with a diagnosed disability or identified developmental delay?
 
In this study not only is the parenting experience of raising a child with a disability explored but this experience is explored within the context or “culture” of a rural or remote community.  Most research is done within a geo-ethnocentric approach where living in rural and remote communities is often reported as a more negative experience that living in an urban setting.  Also, research on the experience of parenting a child with a diagnosed disability or developmental delay is often viewed as negative due to the perceived high stressors these families face and their possible need for specialized services.  It is important to document through the voice of parents a fuller understanding of their experience parenting a child with special needs in rural and remote areas.  
 
It is my goal through this research that a more accurate portrayal of life for families who have children with disabilities or developmental delay when living in a rural or remote community is brought to light, with both the challenges and the joys.

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