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

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.

Name thesis:degree_name

Ph.D.

Level thesis:degree_level

Dissertation

Discipline thesis:degree_discipline

Special Education

Grantor

University of Illinois at Urbana-Champaign

Year dc:date

2021

Author dc:creator

• Schraml, Kristen Marie

Contributors dc:contributor

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

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

Statement dc:rights

• Copyright 2021 Kristen Schraml

Language dc:language

en

Handle dc:identifier

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

OAI identifier oai:identifier

oai:www.ideals.illinois.edu:2142/110446