| Summary: | The primary purpose of this study was to gain a deeper understanding and describe the unique experience of raising a child with a disability or developmental delay when the family lives in a rural or remote community, from the perspective of the parent. Symbolic interactionism theory served as the framework for the study that used ethnographic methodology to explore the experiences of parents in the distinct culture of rural and remote communities. Data collection included two face-to-face semi-structured interviews with eight parents living in four rural communities in BC. Data were categorized, and analyzed using a systematic approach. The analysis generated 13 subthemes that included exploration of topics such as: rural versus remote, the value of Interpersonal relationships, intense emotions, construction of disability, travel considerations and issues, financial burden, and service providers. These subthemes were then clustered under three broad themes which included: community experiences, parenting experiences, and family experiences.
The parents in this study raising a child with a disability or developmental delay identified their communities as small towns which included values such as opportunities to participate in outdoor, recreational experiences as well as the importance of strong interpersonal relationships with community members including the professionals that work with them and their child. The experience of having a child with a diagnosed disability or developmental delay was expressed as intensely emotional but the experience of parenting can be different if your child has a diagnosis versus the ongoing pursuit of obtaining developmental information. Distance to medical services plays a significant role in the experiences of these parents. Access to services impacts timely pre-natal and diagnostic information. There is an increase in the financial burden due to the necessity of frequency of travel, increased costs to access resources and additional costs incurred when spending significant amounts of time away from home. Babies are born outside of local community and family separation may be prolonged if ongoing medical intervention is required. The local service provider, the Infant Development Consultant plays a significant role in creating a strong working alliance with parents as well as facilitating linkages to necessary services and supports. === Education, Faculty of === Graduate
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