Date of Award

December 2016

Degree Type

Dissertation

Degree Name

Doctor of Philosophy

Department

Urban Education

First Advisor

Barbara J. Daley

Committee Members

Rajeswari Swaminathan, Liliana Mina, Leigh E. Wallace

Keywords

Caregivers, Cerebral Palsy, Child, Home Program, Learning, Occupational Therapy

Abstract

The purpose of this study was to examine the lived experiences of family caregivers as they learned a home program from an occupational therapist for their child. Gaining information from the caregiver on experiences with patient education may enable therapists to develop an understanding of the needs of caregivers during the educational process that occurs when a therapist is giving the caregiver a home program. Meeting the learning needs of the caregivers may possibly reduce the amount of overall therapy needed by the child. This phenomenological approach sought to answer the following research questions: (a) what are the lived experiences of caregivers of children with special needs when learning about delivery of an occupational therapy home program for their child from the occupational therapist, (b) how did the caregiver learn the home program, and (c) what helped or hindered the caregiver in learning the home program from the therapist. These research questions were answered by purposefully sampling nine caregivers of children with cerebral palsy who had experienced learning a home program for their child from an occupational therapist. Two interviews were conducted with each caregiver along with completion of Critical Incident Questionnaires and a diary. Findings indicated that caregivers experienced a range of negative emotions including guilt, being misunderstood and feeling criticized. The caregivers felt communication was key. It helped when the therapist was patient, compassionate and made the caregiver feel heard. It hindered learning when the therapist was defensive or said things which contributed to the caregiver having negative feelings. Caregivers wanted the therapist to explain why they were being asked to do certain activities within the home program. They wanted information, resources and more time learning how to do what will help the child. Lastly, caregivers wanted the relationship with the therapist to be a partnership.

Therapists could benefit from receiving education on teaching/learning theories such as andragogy, experiential and transformational learning. The therapist would then be better prepared to incorporate teaching approaches and would be better prepared to enter the teaching and learning environment of the therapy session and work with their clients.

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