Networked Empowerment on Facebook Groups among Parents of Children with Special Needs

In prior work, we examined how parents of children with special needs access support and experience judgment on social media sites. In this work, we describe how parents access health and education resources on Facebook to support their children’s needs. We conducted 43 interviews with parents of children with special needs to investigate whether using social media sites helps them to perform this caregiving work.

What is empowerment?
Empowerment describes a process in which people gain understanding and control over personal, social, economic, or political forces in order to take action to better their lives. When people face difficult situations, marginalized identities, or new environments where personal roles change, they can feel disempowered, no longer able to control their own outcomes. Living in a cycle of disempowerment can lead to learned helplessness, where future outcomes continue to suffer because individuals no longer believe they can control and change their future and thus, stop trying.

We find that parents experience three major stages:

    • going online after receiving a diagnosis

There’s a lot of medical terms that are thrown at us all the time… we just have to Google. Google these terms and what they mean and what things that it comes up with just to get an idea, because we don’t always know and the doctor sometimes just throw it all on us. -P15

You can search a website, you can Google things, you can glean or gather information on the web in millions of sites but to talk to someone that does it day-in-day-out, I think that probably the most informative and helpful way. And that’s what I found on Facebook… If I needed a question answered, I have a couple of friends that I know I’d be able to just type in their name, ask a question and be able to get a response in a pretty timely manner. -P16

    • learning about services from other parents

The whole art of handling kids is learning how to navigate hundreds of people in your life. So you have a social worker from the school who ends up being useless. You have a social worker from the ventilation clinic. You have a social worker from the ICU. You have a social worker from the Cardiac unit. You have the local county’s social worker. And then you have a social worker from hospice. They were all from different organizations, but they’re all trying to help give you resources. -P10

    • becoming advocates for the child’s needs

It’s mostly newly diagnosed people saying, “Hey, I just got this diagnosis and here’s a picture of my kid and I’m glad that I know that we’re not alone.” Fifty people say, “Welcome to the group. Welcome to the journey. Here’s some resources for you.” It’s a lot of that stuff. But also fundraising updates, research updates, conference updates, stuff like that. -P21

We explored a concept of networked empowerment that describes how parents whose children have received a special needs diagnosis find other parents, mobilize resources, and become advocates. Unlike with offline groups, parents are now able to do this through almost real-time access to other parents on Facebook. Through their process of adjusting to their child’s diagnosis, parents work to overcome the anxiety and uncertainty that follows a diagnosis, navigate the complex process of accessing services, and become advocates for their child’s needs as well as for the special needs cause more generally.

Future Work
While we find that parents turn to social media sites for mobilization and advocacy, there is little evidence that such efforts have resulted in change on a local or global scale. Future work should investigate the outcomes of long-term participation and advocacy on culture, policies, and rights in the U.S. today.

Participants all were currently or had previously been married to a person of the opposite gender. We did not ask participants their household incomes and do not know how representative the results are to all income ranges.

This research is published in CHI 2015. For more details, please read the full paper.

In our first round of interviewing, we oversampled mothers. The second round of interviewing targeted fathers. The interview protocols for this study are available: Parents Interview Protocol and Fathers Interview Protocol.

Ammari, T. and Schoenebeck, S.Y. (2015). “Networked Empowerment on Facebook Groups for Parents of Children with Special Needs.” In Proceedings of the ACM Conference on Human Factors in Computing Systems (CHI ’15). Seoul, Korea. April 18-23, 2015.

This research was approved by University of Michigan’s Institutional Review Board HUM00074842.

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