Tips from Young Adults with Physical Disabilities.
Based on in-depth interviews during doctoral research. Beth Rossen, September 2024.
Trying to get health information resources during the transition from pediatric to adult healthcare can be daunting and overwhelming. The following tips are offered to help you navigate your way and access resources available to you. Remember, you are not alone and there are people who are willing to help.
Self-educate about your disability
The decision to educate yourself about your disability is necessary because you are leaving comprehensive pediatric care and moving to adult care that is often geographically spread out and more difficult to access.
- Seek knowledge: find out more about your disability diagnosis and what it means. You can ask your therapist or other professionals for reliable sources of information about your diagnosis.
- Use your inner resources and abilities, such as advocacy skills and past experience with professionals. You know yourself best and what works for you.
- Develop new skills, such as assertiveness, self-advocacy, and asking questions about things you don’t understand.
- Encouragement from others: family and friends should remember to encourage you to self-educate, trust your inner resources and abilities and to develop new skills. Reinforcement is beneficial and may result in you feeling more capable of getting your own health information resources through self-advocacy.
Seeking health information resources
Seeking and accessing health information resources takes energy, time, and determination. You may find little or limited resources however it is important that you don’t give up!
- Consider why you want or need health information resources: this information can help you stay healthy or help to improve your health.
- Consider what works best for you: do you prefer a personal or non-personal approach? Would you prefer to speak with a physician or access resources through the internet? Do you need specific information about your disability or general health information? Are you looking for information about physical health and/or psychological health, traditional or alternative medicine?
- Consider the credibility of the health information resource: is this lived experience or is it a peer-reviewed research publication?
- Navigate the challenges of getting health information: physical inaccessibility, transportation issues, financial issues, technological difficulties.
- Ask for help from your health care team, family, friends if you do not understand health information, if you need assistance or support, feel discouraged or need a break from your search.
Riding the emotional roller coaster
Attempting to access information and resources for your healthcare may trigger a roller coaster of emotions. Your interactions with healthcare professionals may make you feel cared for, hopeful and empowered or at times feel devalued, betrayed, helpless, nervous, angry and/or frustrated.
- Find healthy ways to cope with your feelings, such as exercising, listening to music, spending time with family, friends or a pet, writing in a journal, or talking to a trusted person.
- Ask family and friends for support as you go through the ups and downs of interacting with healthcare professionals and responding to the possible lack of health information resources.
Integrating health information with lived experience
Decide if and how you would like to apply the health information in your day-to-day life.
- Do you want to, and can you apply health information in your daily life?
- Do you want to but cannot apply health information in your daily life?
- Do you choose not to apply the health information in your daily life?
- Identify possible challenges and create a list of possible solutions on your own or with the help of family and friends.
- Identify and discuss how your disability impacts your daily life, how the health information you get may or may not help you in your daily life.
Final Takeaways & Food for Thought
- Think about how you feel trying to get health information resources as you make the transition from pediatric to adult healthcare.
- Talk to your family and friends, healthcare team or other important people in your life about your feelings.
- Find someone with lived experience who could help you. Learn what worked for them and what did not.
- Most importantly, remember you are the expert of your own health and health information needs as you transition from pediatric to adult healthcare!
About the Author
Beth Rossen is a pediatric nurse and a university educator, with over thirty years of experience. She holds a bachelor’s degree in social sciences, a bachelor’s degree in nursing, a Master of Science degree in nursing, and a doctorate degree in public health sciences. Beth never imagined that her doctorate research would become her lived experience when her young adult child, who has an invisible disability, was trying to get health information resources when transitioning from pediatric to adult healthcare.