What are the core areas that affect health and wellbeing for people with IDD? This study in the Disability & Health Journal draws on the knowledge of community members, caregivers, and clinicians. It identifies ways to support the health of this disability community.
This plain language summary is part of a new series sharing highlights from the Disability and Health Journal.
Why was this study done?
This study looked at the healthcare gaps that affect people with intellectual and developmental disabilities (IDD). This group is growing across the U.S. but often does not get the care they need. Around 10 million people have IDD. Many also live with other mental and physical health conditions. The IDD community needs more research on their health experiences and supportive care. Researchers often leave people with IDD out of relevant studies. However, a lot gets missed when research doesn’t fully include diverse people. By including people with IDD in our studies, researchers can better map this population’s health needs and outcomes. This approach aims to help close healthcare gaps for people with IDD. Better research can show what helps or stops people from meeting their health goals. Researchers are developing guidelines on how best to include people with IDD. This includes using alternative methods of granting consent to participate in research. It also includes accessible design best practices. A mix of research methods are recommended for reaching this population effectively. These include surveys and focus groups.
This study looks at people with IDD within their social lives and communities. This approach doesn’t focus on only the person. It also includes the people around them, like caregivers and healthcare providers. These people represent important influences on the health of people with IDD. Improving health of people with IDD must include these supportive networks.
How was this study done?
This research is part of a larger that aims to improve health for people with IDD. The project brings together people with IDD, their caregivers, and doctors. It also engages medical providers like dentists and physicians to share about care provision. Payers and regulators were also in conversation to talk about coverage. In 2022 and 2023, the team held talks and meetings with more than 180 individuals. People with IDD were engaged as experts to share their knowledge, alongside other relevant groups. This study gathered information from 12 focus groups. The goal was to collect different perspectives on health and wellness. The groups covered topics such as healthcare navigation, mental health, and caregiver wellbeing. The research team used a participatory approach in this study. Participants helped guide the research.
Starting in Spring 2022, researchers identified key health topics of concern to the IDD community. These topics were:
- Making health choices
- Emotional and mental health
- Physical health, reducing pain, and increasing energy
- Sexuality, gender, reproductive health, and parenting
- Being able to do the things I love or need to do
- Family caregiver/partner wellness and support
- Clinical workforce development
- System supports
- Priorities of health service payers and regulators
Then in November 2022 and May 2023, those topics were the focus of a second round of conversations. The researchers picked participants for these conversations from across the US. They used two main methods of selection. The first group was selected based on the researcher’s existing networks. Those individuals were then tasked with finding the next rounds of participants. That second group was identified through word-of-mouth outreach through existing networks.
The study worked hard to be inclusive by giving people many ways to join in. This included video calls, simple materials, and tools like AAC devices for communication. The team also gave personal help and sent reminders before each session. This shows that the study wanted to make it easy and welcoming for people with IDD to share their ideas. The focus groups were designed to encourage open conversations.
What did this study show?
Participants in the focus groups identified four important areas that affect health and wellness:
- Making Healthy Choices – For people with IDD, healthy choices are unique to the individual. Self-care is about understanding their own bodies and being able to communicate when they’re in pain. Self-advocacy is key, so that a person can work with their doctors to determine the best care. People need resources that support good decision-making. These include community support, healthcare access, adequate housing and transportation. People need to be able to say “no” to treatments if they’re not fully understood. Informed consent to intimate experiences in relationships were also noted. Eating a healthy diet and getting movement were also seen as more important than focusing on weight.
- Participating in Everyday Activities – People with IDD shared how important it was to enjoy daily activities. These included watching TV, playing music, and being part of their faith community. Social connection and meaningful leisure activities boost well-being. However, being able to join activities depended on things like accessible transportation. One participant indicated that totally independent living should not be a goal. This points to the need for more realistic and supportive health goals.
- Benefiting from Natural Supports – Family, friends, and peers are very important for emotional and practical help in making healthy choices. However, not everyone has a big support network. Some people with IDD rely on online groups or other non-traditional supports. While disability focused peer groups were part of that, deeper friendships were also critical. Peer groups helped people cope with difficult experiences. Participants talked about other community resources as needed supports outside their homes. Self-advocacy, independence, and care tailored to their needs were key to achieving wellness.
- Accessing Skilled Professional Supports – Having well-trained healthcare providers is crucial. Doctors and other professionals are more trusted when they understand and respect the needs of patients. Providers understood the importance of caring for the “whole person”. Clinician attitudes and knowledge of their patients’ needs could dramatically affect care. This shows that some challenges come from the healthcare system itself.
They indicated that healthcare providers could coordinate better to improve care. Insurance navigation and healthcare access were also big issues. Many people with IDD struggle to get services because of insurance limits. With changes to patient care routines, better care could become possible. Intentional mental health support and appropriate use of medications was also noted.
This study strongly supports including people with IDD in health research. Doing so is key to creating solutions that reduce health gaps. The research calls for care that is easy to access and centered on the person. Healthcare should consider both the individual’s needs and their social environment. Improving health for people with IDD means addressing both personal and system-level issues. The research also modeled how inclusive research could be done. This means making research more inviting and using language that people with IDD understand.
Limitations of the study:
The people who took part might not fully represent the diversity of everyone with IDD. Data on IDD prevalence usually focuses on children. That data suggests that there are more men, Black, and non-Hispanic people with IDD. This study had more women and white participants with IDD. The way participants were selected may have been biased.