Health Story Type: Interview

Family silence around disability complicates brothers’ bond

In this brief interview, Terrence Ho describes his relationship with his brother Torrance, who was diagnosed with Duchenne muscular dystrophy as a child and passed away at the age of 37. The interview addresses family relationships, cultural stigma, and Terrence's roles as caregiver and advocate for this brother. Terrence also describes Torrance's talents as an artist and power wheelchair hockey goalie. Terrence has advice for other siblings about how to manage family dynamics, emotional stress, and patient advocacy. The interview reveals what an important role siblings play over time when a child has a degenerative condition, and also speaks to the difficulty parents may have in talking to children about their brother’s or sister’s disabilities. There are several mentions of types of health care and services that were provided or that would have been useful. This brief story provides insight into challenges and rewards of the sibling relationship, one that is often overlooked. It could be used to prompt discussions about family caregiving, family communication, and ways health care providers can support family caregivers.

Former Anti-Vaccine Mom Explains How Movement Pulled Her In, And How She Left

This NPR interview discusses Lydia's journey from being initially pro-vaccine to joining the anti-vaccination movement after a traumatic experience with her first child's vaccinations. She describes how online forums fueled her fears, leading her to reject vaccines for her subsequent children. However, Lydia's perspective shifted during the COVID-19 pandemic, prompting her to research and ultimately decide to vaccinate her children. The story highlights the role of misinformation in the anti-vaccine movement, the challenges faced by healthcare professionals combating disinformation, and the impact of social media. Lydia's experience also emphasizes the need for open dialogue, fact-based education, and addressing vaccine hesitancy. The interview concludes with Lydia expressing her newfound motivation to pursue nursing school to help educate new parents about vaccines. Both audio and written transcript are available. Lydia’s story would be relevant to health-related courses or discussions related to vaccination, healthcare decision-making, and the impact of misinformation.

Living with Huntington’s Disease

This is a five-minute video narrated by a 46 year old woman who acts as an in-home caregiver for her father, who has Huntington’s disease, a terminal genetic disease that children have a 50% chance of inheriting from their parents. She describes the disease as “having Alzheimer’s, Parkinson’s, and ALS all together.” Panning from the bedroom to the kitchen, the video follows this woman throughout routine moments of taking care of her dad, such as getting him out of bed and feeding him. In between clips, statistics and factual information about Huntington’s are flashed on the screen. Recently, she found out she had the gene and is beginning to get symptoms herself, but is in a clinical trial for a drug. This is a very moving, emotionally impactful video that also provides a lot of basic information about what it is like to live with Huntington’s and take care of someone who has it. It is rare to find such a nuanced blend of the emotional and the informational, as well as a perspective of a person taking care of someone with the very same disease, just at different stages. It would be useful to play for discussion material in a class about genetic diseases or family members who act as caregivers or in a discussion about how personal narrative and statistical information can be combined to communicate a message. It could also be used as an example video in an assignment for students to create narratively infused informational interview videos about a certain disease.