A picture is worth a thousand words: Capturing caregivers’ early advocacy stories

Schraml, Kristen Marie

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https://hdl.handle.net/2142/110446 Copy

Description

Title

A picture is worth a thousand words: Capturing caregivers’ early advocacy stories

Author(s)

Schraml, Kristen Marie

Issue Date

2021-04-09

Director of Research (if dissertation) or Advisor (if thesis)

Ostrosky, Michaelene

Doctoral Committee Chair(s)

Ostrosky, Michaelene

Committee Member(s)

• Santos Gilbertz, Rosa Milagros
• Burke, Meghan
• Hile, Kimberly

Department of Study

Special Education

Discipline

Special Education

Degree Granting Institution

University of Illinois at Urbana-Champaign

Degree Name

Ph.D.

Degree Level

Dissertation

Keyword(s)

caregivers’ individual and systemic advocacy, early intervention, auto-photography, photo-elicitation

Abstract

Historically caregivers of individuals with disabilities have engaged in individual (for their children) and systemic advocacy (for others). Although it is widely known that caregivers advocate for their school-aged children with disabilities, little is known about how caregivers who have infants and toddlers (birth to three years old) with delays or disabilities advocate for their young children. A focus on this age group is important because it helps illustrate caregivers’ advocacy efforts at different time points, and helps better situate professionals to support and promote advocacy early on in a variety of settings. Given the relevance of this topic and the limited literature, the purpose of this study was to use qualitative inquiry, specifically auto-photography and photo-elicitation interviews, to explore 13 caregivers’ advocacy experiences in their children’s early years. Thematic and constant comparative analyses were used and subsequently 41 major codes within seven categories were identified. Three findings related to participants in this study included: (a) caregivers engaged in both individual and systemic advocacy (although individual advocacy was more common) across formal (with medical professionals) and informal settings (at home with family members), (b) advocacy efforts and strategies were often centered around a context-specific problem, and (c) auto-photography and photo elicitation methods proved helpful in understanding caregivers’ experiences. Implications for practice and directions for future research are discussed.

Graduation Semester

2021-05

Type of Resource

Thesis

Permalink

http://hdl.handle.net/2142/110446

Copyright and License Information

Copyright 2021 Kristen Schraml

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