Accessibility of Medical Care and Health Information for People with Developmental Disabilities

Report

Mayu Makio

ATDO is participating as a collaborating research organization in a research project led by Dr. Yamaki of the National Cancer Center Japan. The project aims to ensure that people with disabilities can receive appropriate cancer care.

This year, we produced Multimedia DAISY versions of easy-to-understand booklets created by the National Cancer Center (“Cervical Cancer” and “Cancer Screening”). These DAISY versions synchronize text, images, and audio narration.

In addition, interviews were conducted with individuals with developmental disabilities. Through these interviews, we collected feedback on both the easy-to-understand booklet and the DAISY version, and compiled examples of difficulties and needs related to obtaining health information and visiting medical institutions.

Below are the key findings.

1. Difficulties Experienced by People with Developmental Disabilities

Interviews were conducted with two individuals with dyslexia and one individual with high-functioning autism. The following difficulties related to information access and medical visits were identified as case examples.

<Mainly related to dyslexia>

①    Difficulty reading kanji

• Difficulty reading materials provided at hospitals (booklets and instructions for medical visits)
• Difficulty reading medical questionnaires
• Unable to read signs, making it difficult to find places such as reception desks

②    Difficulty writing

• Difficulty filling out medical questionnaires
• Difficulty taking notes and conveying what was heard to others (e.g., family members), often with spelling mistakes or missing characters

<Mainly related to high-functioning autism>

③    Difficulty reading when tired or under stress

Although reading is usually possible, it may become difficult when the person is tired or under stress.

• Text may appear blurred or hard to see
• Characters may lose meaning and appear like unfamiliar foreign text

④    Sensory hypersensitivity

Minor discomfort for most people may be experienced as intense distress.

Examples include:

• Unable to visit the dentist because mixed sounds are unbearable (auditory sensitivity)
• Difficulty using eye drops (tactile/visual sensitivity)
• Difficulty taking powdered medicine (tactile sensitivity)
• Difficulty undergoing examinations or treatments that involve pain or unusual sensations

⑤    Developmental coordination disorder

• Difficulty using inhaled medication because breathing movements cannot be coordinated as instructed

<Difficulties common across developmental disabilities>

⑥    Difficulty identifying key points

• When listening to explanations or reading materials, it can be difficult to grasp the main points
• Difficulty explaining symptoms clearly during medical consultations
  (Some individuals may talk too much; however, they can answer questions if asked step-by-step such as “Where does it hurt?” or “Since when?”)

⑦    Difficulty understanding unfamiliar technical terms

• Doctors’ explanations during consultations may include difficult terminology
• Terms used in standard booklets may feel difficult, while the language used in easy-to-understand versions is easier to understand

⑧    Difficulty planning ahead

• Difficult to schedule medical screenings months in advance
• Hard to feel motivated to undergo screening when there are no current symptoms
• Uncertainty about what preparations are needed before a medical visit

⑨    Forgetting information after returning home

• Even if explanations are understood during the consultation, they may be forgotten later
• Difficulty explaining previous consultations when seeking follow-up care or second opinions

<Other factors>

⑩    Environmental factors

• At some workplaces (such as sheltered workshops), regular health checkups may not be provided
• Paying for medical examinations personally may be financially difficult

2. Multimedia DAISY Version of the Easy-to-Understand Booklet

Examples of difficulties in Accessing Information among people with developmental disabilities include:

• Difficulty reading kanji
• Medical terminology being difficult to understand
• Difficulty grasping the main points when there is too much information

In the easy-to-understand booklet, furigana (phonetic guides) are provided for all kanji characters. However, interviewees expressed mixed opinions: while furigana can make reading easier, too much text make a page difficult to read, and text written only in hiragana can also make comprehension difficult.

Participants commented that both the easy-to-understand booklet and the DAISY version are useful and easy to understand.

These findings suggest that the combination of:

• an easy-to-understand version written in “plain Japanese” with reduced content, and
• a DAISY version with audio narration

can help reduce barriers to accessing information and support better understanding for people with developmental disabilities.

(Image: From left — standard booklet, easy-to-understand booklet, DAISY version)

<Easy-to-Understand Booklet>

The easy-to-understand booklet is a version of the standard cancer information booklet rewritten in plain Japanese so that it can be understood by anyone, including people with intellectual disabilities.

Features include:

• Use of plain Japanese
• Furigana provided for kanji characters
• Illustrations that visually explain the content
• Fewer words per page and larger font size

While the standard booklet is 32 pages (B5 size), the easy-to-understand version is 16 pages (A4 size).

 <Multimedia DAISY Version>

The Multimedia DAISY version is a digital book that synchronizes text, images, and narrated audio based on the content of the easy-to-understand booklet.

The following features support people with reading difficulties:

• Audio narration to support comprehension
• Highlighting that shows the portion currently being read
• Adjustable text size and customizable background/text colors
• Adjustable playback speed

3. Difficulties When Visiting Medical Institutions

The interviews identified several difficulties related to visiting medical institutions, including:

• difficulty planning ahead
• difficulty summarizing key points when speaking
• forgetting information heard during consultations
• sensory hypersensitivity
• developmental coordination disorder

These factors may make it harder for people with developmental disabilities to seek medical care.

By identifying appropriate support measures for each of these challenges, we can improve access to health information and medical services for people with developmental disabilities.

4. Materials download

The easy-to-understand booklets and Multimedia DAISY versions produced through the project of Institute for Cancer Control, National Cancer Center Japan,
“Research to Promote the Implementation of Appropriate Medical Care and Support for Cancer Patients with Pre-Existing Disabilities”
are available on the following website (in Japanese):

https://plaza.umin.ac.jp/~CanRes/match/match-achievement/#mokuji03

M.M.

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