What I Would Do to Take Away Your Pain: A Photovoice Study with Mothers of Children with Medical Complexities

Background and Purpose: Mothers of children with medical complexities are mothers with children that have at least one chronic condition that results in high service needs. While research has identified that families of children with medical complexities have high unmet needs, little focuses specifically on how such mothers understand and identify themselves, their role in coordinating care, and their mental and physical health. As such, this study aims to gain a better understanding of how mothers navigate the day-to-day psychological, social, and physical realities of having a child with medical complexities (age 0- 6). Aligned with participatory principles and praxis, the research problem was identified and defined by two mothers of children with medical complexities (co-creators). The two mothers sought to create a research project, with the help of the institutional researcher, that focused on how to provide them, and others like them, with support and resources necessary to cope with their day to day lives.

Methods: PhotoVoice, the research method decided upon by the co-creators, is a qualitative research method rooted in participatory action research principles that incorporates photography, analysis, group discussions, and action. Co-creators identified weekly picture topics that highlighted strengths and needs. The final research collective consisted of six mothers of children with medical complexities ages 0-6 in the San Diego area. The weekly sessions were an hour and a half, held via zoom, and lasted for 8 weeks. After the 8 weeks were completed, the sessions became weekly planning sessions where the collective planned their action outcomes.

Results: Through 8 weeks of photo-led engagement and discussion the collective identified their top pictures, and through discussion came up with 5 main themes: (1) Identity (theft), (2) This is our normal. Our honor., (3) The language of advocacy, (4) Manifesting our voice, and (5) Ongoing maintenance required. Within each of these themes the collective created a shared description of what it meant to them. The collective then used these themes to create action outcomes that highlighted their assets and addressed their needs.

Conclusions and Implications: True to the PhotoVoice methodology, the collective was ultimately responsible for deciding what they wanted to do with the research findings. Two main ways to disseminate findings were decided upon. First, to increase empathy via perspective-taking, a virtual photo exhibition was held where mothers presented pictures and their descriptions. The second action item was to create a mentorship model for new mothers of children with medical complexities.

This PhotoVoice project emphasizes the need for community members to lead knowledge production to meaningfully influence policies and programs. As such, social work researchers should adapt the process and outcomes of this research to advance social justice. This means that the community must be in charge of defining the research problem, methods, and dissemination of findings that make the most sense for them. Of particular importance for researchers is the recognition that the project extends beyond identification and write up of research findings and includes supporting the community as they use findings to implement self-identified change.