Amyotrophic lateral sclerosis (ALS) is an neurodegenerative disorder that has gained public awareness quickly in the past decade. People with this disease become severely disabled and dependent on others. The primary caregivers of ALS patients (usually a spouse) often experience what is known as caregiver burden, the overall impact of physical, psychological, social, and financial demands of caregiving (Pinquart & Sorensen, 2003). This type of burden is not specific to just caregivers, however, and can affect the children living in the home equally as much. While there is a body of literature related to caregiver burden and needs, there is limited research regarding preventative measures or services to be offered to the children of this population. In my own experience, I felt as though I was not appropriately connected with professionals or support groups that could understand my distress or offer me adequate support. We aimed to identify how other people in these circumstances felt in regards to psychological distress and support needed and received. I created and distributed an online Qualtrics survey to assess these aspects utilizing a confidential, self-report approach. We assessed the different levels of psychological distress that were felt at the time when the participants' parent's quality of life was at its worst (bereavement, anger, sadness, exhaustion etc.) as well as sources of support (friends, family, counseling, groups, etc.) and how effective they felt that support was in helping them through this difficult time in their lives. Additionally, we included an open-response question encouraging participants to disclose any support they wish they had received. I spent four weeks recruiting participants across the United States and Canada to participate in my survey through e-mail, Facebook, and my faculty mentor's professional network.

In the middle of working on this research through the Summer Scholars program, I had to unexpectedly put my project on hold to return home for a family emergency that affected my ability to continue working on the project through the rest of the summer. I am now able to dedicate more time to it as an independent study throughout the Fall Semester and will soon begin to analyze data and explore the results. I hope to use the connections I have gained through recruitment and my own personal resources to offer support organizations more information about what kinds of distress individuals with parents who are living with ALS may be feeling and the kind of support that would be more beneficial for them to receive. This project is one I feel connected to and invested in because I know that, with my results, I will personally be able to start the conversations with organizations or children of ALS patients themselves and I can be the catalyst to help to improve support for those experiencing the emotional burden of this disease.

We have just completed our survey data collection. Our next step is to analyze the qualtitative data from the survey. This is a time-consuming process and, because of this, we have not yet reached our intended project outcome. After analyzing the survey data, I will create a poster including our completely analyzed data and its implications. This poster will be presented at a conference, and the analyses will be used to prepare a formal research report. Additionally, I would like to produce a product (a brochure or something similar) for children of individuals with ALS based on the outcome of this learning opportunity.