Pediatric Caregiver Experience & Support Needs Assessment

Welcome, and thank you for your interest in this survey. This study explores the experiences and support needs of adult caregivers of children receiving medical care. It takes approximately 8–10 minutes to complete. Your participation is entirely voluntary, and you may stop at any time without consequence. There are no right or wrong answers — we are interested only in your honest opinions and experiences. All responses are confidential, will be anonymized, and reported only in aggregate to inform improvements in family-centered care services. Please answer based on your experience with one child you primarily care for. By continuing, you indicate your consent to participate.

Are you an adult (18 or older) who currently serves as a primary caregiver for a child receiving medical care?

• Yes
• No

What is the age of the child you primarily care for?

• Under 1 year
• 1–3 years
• 4–6 years
• 7–12 years
• 13–17 years
• 18 or older

What is your relationship to the child you primarily care for?

• Parent
• Step-parent
• Grandparent
• Foster parent or legal guardian
• Adult sibling (18+)
• Other caregiver
• Prefer not to say

Which of the following best describe the child's health needs? (Select all that apply.)

• Chronic physical condition
• Developmental disability
• Behavioral or mental health condition
• Acute or short-term condition
• Rare disease
• Medically complex (multiple conditions)
• Not sure
• Prefer not to say
• Other (please specify)

In a typical week, approximately how many hours do you spend on caregiving tasks (e.g., medical care, therapy, care coordination) for this child?

• Less than 5 hours
• 5–10 hours
• 11–20 hours
• 21–40 hours
• More than 40 hours
• Not sure

Overall, how much strain have you felt as a caregiver in the past 30 days?

How often do you manage the child's medications or treatments?

How often do you coordinate medical appointments or therapies for the child?

How often do you assist with the child's daily personal care needs (e.g., bathing, feeding, mobility)?

How often do you advocate for the child's needs with schools, insurers, or other organizations?

Which areas of your life have been most affected by caregiving in the past 30 days? (Select all that apply.)

• Sleep
• Work or school
• Finances
• Social life
• Mental health
• Physical health
• Family relationships
• None of the above
• Other (please specify)

Approximately how many different healthcare providers has the child seen in the past 6 months?

• 1
• 2–3
• 4–6
• 7–10
• More than 10
• Not sure

Please rank your top 3 care coordination challenges, from most to least challenging.

1. Scheduling appointments
2. Getting information shared between providers
3. Repeating the child's history at each visit
4. Insurance approvals or authorizations
5. Transportation or distance
6. Finding the right specialist

How easy is it to find clear information about the child's care plan and instructions?

How helpful has your child's healthcare team been as a source of support in the past 6 months?

How helpful have family and friends been as a source of support in the past 6 months?

How helpful have community or online support groups been in the past 6 months?

How helpful have care coordinators, case managers, or social workers been in the past 6 months?

Which support formats would be most useful to you going forward? (Select all that apply.)

• In-person support groups
• One-on-one counseling
• Phone hotline
• Text or chat support
• Mobile app tools
• Printed guides
• Video tutorials
• Live webinars
• Peer mentor matching
• None of the above
• Other (please specify)

Overall, how satisfied are you with the quality of care your child has received?

Overall, how well-supported do you feel as a caregiver by the healthcare system?

How likely are you to recommend your child's primary healthcare provider to another caregiver in a similar situation?

Thinking about your overall caregiving experience, what has been the biggest gap in the support available to you, and what would make the most difference going forward?

What is your age?

• 18–24
• 25–34
• 35–44
• 45–54
• 55–64
• 65 or older
• Prefer not to say

What is your gender?

• Woman
• Man
• Non-binary
• Prefer to self-describe
• Prefer not to say

Which region do you live in?

• Africa
• Asia
• Europe
• North America
• South America
• Oceania
• Prefer not to say

What is the highest level of education you have completed?

• Less than high school
• High school or equivalent
• Some college or associate degree
• Bachelor's degree
• Graduate or professional degree
• Prefer not to say

What is your current employment status?

• Employed full-time
• Employed part-time
• Self-employed
• Homemaker or full-time caregiver (not employed)
• Student
• Unemployed, seeking work
• Retired
• Unable to work
• Prefer not to say

Thank you for sharing your experiences. Your responses are valuable and will be used to improve support services for caregivers and families. If you have any questions about this study, please contact [research team email].