The purpose of this project is to compile an annotated bibliography of the most essential books for families with minor children and at least one parent or caretaker living with a disability or chronic illness that affects their parenting experience.
The bibliography will help families quickly and easily identify beneficial resources and also efficiently borrow them from libraries nationwide at no cost to them.
One in four Americans lives with a disability (Centers for Disease Control and Prevention), and more than half of adults live with at least one chronic condition such as arthritis, cancer, heart disease, or hypertension (Boersma, Black, & Ward). Among these Americans, many are or wish to become parents: a 2012 estimate suggests that 4.1 million parents live with disabilities and a child under age 18 living at home (Kaye). A disability or chronic illness can significantly impact an individual’s physical or cognitive capabilities in relation to raising a child. The parent may be unable to give piggy-back rides or even to lift and hold a child. They may not have the stamina for outdoor play. Their symptoms and abilities may even vary from day to day, causing additional confusion for children about how their parent can and cannot engage with them. Whether a disability appears before or after a child is born, the parent or parent-to-be with the disability, as well as co-parents and the children themselves, may struggle to make sense of the limitations imposed by the disability and to navigate them in healthy and effective ways. Books about other parents with disabilities and their children are one kind of tool that may help families to process, discuss, and manage their experiences.
This project will focus primarily on physical disabilities—such as problems of vision, hearing, and mobility—cognitive disabilities, and physiological medical conditions such as arthritis and cancer. Although psychological diseases such as chronic depression and bipolar disorder can also impact parenting, the bibliography will not initially attempt to tackle this broader scope. However, select works may be included when they clearly and relevantly address the overlap of physical and psychological symptoms.
Most works included are in English, but bilingual works when present are indicated with this icon:
Centers for Disease Control and Prevention. Disability Impacts All of Us. Retrieved September 8, 2021, from https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html
Boersma, P., Black, L. I., Ward, B. W. (2020). Prevalence of Multiple Chronic Conditions Among US Adults, 2018. Preventing Chronic Disease, 17:200130. http://dx.doi.org/10.5888/pcd17.200130
Kaye, H. Steven. (2012). How Many Parents with Disabilities Are There in the U.S.? Berkeley, CA: Through the Looking Glass. Retrieved September 8, 2021, from https://www.lookingglass.org/national-services/research-a-development/126-current-demographics-of-parents-with-disabilities-in-the-us
Published online 13 July 2023
This project was conceptualized by Erin Owens and produced with the invaluable help of her graduate research assistant, Kimber Cox.
Kimber was responsible for searching for books using provided guidelines and search strategies; requesting books through interlibrary loan; conducting initial review of book content relative to project scope; inputting metadata for selected titles into LibGuides; and maintaining detailed logs of each item's status throughout these workflows.
Erin was responsible for defining the project scope, developing guidelines and search strategies, creating the guide's structure, writing annotations, and quality-control checking all aspects of the project throughout. Erin was inspired to propose this project for a Carnegie Whitney Grant as a result of her personal experiences in parenting with her own chronic illness and a co-parent with physical disabilities.
Comments, Questions, Concerns, Suggested Resources?
Submit a Feedback Survey in this guide, or direct communication to: Professor Erin Owens, Sam Houston State University, SHSU Box 2179 Huntsville TX 77341, eowens [at] shsu.edu