Date of Award

2014

Document Type

Scholarly Project

Degree Name

Master of Occupational Therapy (MOT)

Department

Occupational Therapy

First Advisor

Mandy Meyer

Keywords

Caregivers -- education; Muscular Dystrophies; Occupational Therapy -- methods; Quality of Life

Abstract

The purpose of this scholarly project was to develop a holistic guide that could be provided by occupational therapists (OTs) to caregivers of individuals with muscular dystrophy (MD). A comprehensive literature review was conducted on the impact that caregiving for individuals with MD has on quality of life, stress management and mental health. The review of literature also explored caregivers’ access to resources and common difficulties experienced. The literature revealed that there have been recent advances in medical fields which have led to an increased lifespan for individuals with MD to an average age of 27 years old (Eagle et al., 2007). As a result, caregivers of individuals with MD are experiencing an increase in psychological and physical demands for an extended period of time. Families and caregivers have expressed the need to have access to reliable and accurate resources throughout the disease process. They have often reported feeling vulnerable, stressed and less supported as the disease progressed when they did not have access to resources (Dawson & Kristjanson, 2003). Based on the unmet needs that caregivers of MD often face, a guide, Caring for Yourself as a Caregiver, was created. The guide can be used to ensure caregivers have easily accessible resources to fulfill their needs as a caregiver while maintaining their own physical, emotional and mental health.

Guided by the Model of Human Occupation and the adult learning theory, this caregiver guide addresses a caregiver’s volition, habituation and performance capacity to increase meaningful impact and occupational functioning. These models were also used to format the product in a way to make it easily understood by caregivers of varying educational levels. Within the caregiver guide there are sections that focus on: roles of a caregiver, information about MD, how the disease typically progresses, common caregiver tasks, caregiver well-being, the grieving process, palliative care, and resources to look for additional information. There was also an OT manual created to serve as an intervention tool and provide guidance on how to use the caregiver guide. Through OTs providing the guide, caregivers will be able to better care for the individual with MD and find greater meaning, value and a sense of commitment from taking care of their loved one with MD. This manual was created to help caregivers get the most out of their time with their loved one by learning how to best care for themselves.

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