Proposed research instrument · preview only
Participation and Access Burden Study
A framework for measuring what people and providers must absorb when systems are difficult to reach, understand, trust, or use.
Important boundary
This page does not collect responses.
The questions below are an early design scaffold—not a validated survey, screening tool, diagnostic instrument, clinical assessment, or eligibility test. Do not enter personal health, legal, employment, or recovery information.
Module 01
Finding and reaching support
- I can identify where to begin without already understanding the system.
- Transportation, distance, connectivity, hours, or cost make support harder to reach.
- I can tell whether a service is available before completing a lengthy intake.
- When one service cannot help, responsibility for the next handoff is clear.
Measures: entry clarity, resource scarcity, eligibility opacity, referral ownership, and abandoned pathways.
Module 02
Disclosure torque
- I must share more personal history than seems necessary to obtain help or an adjustment.
- I worry that asking for support will change how others judge or treat me.
- I must repeatedly prove the same need to different people or systems.
- I can request what helps without adopting a diagnosis or identity label.
Measures: disclosure burden, stigma risk, repeated proof, functional-need pathways, and privacy control.
Module 03
Continuity and control
- I know who currently owns the next action.
- I can see the status of my request, referral, or application.
- I can correct, limit, or withdraw information I previously shared.
- A disruption does not force me to restart the entire process.
Measures: ownership, status visibility, consent control, re-entry cost, and continuity after disruption.
Module 04
Provider and frontline burden
- Staff can identify the responsible next person without searching across disconnected systems.
- Documentation supports care or service delivery rather than duplicating it.
- Staff can make a referral and learn whether the handoff was completed.
- The workflow protects professional judgment without relying on individual memory.
Measures: administrative repetition, closed-loop referral, information fragmentation, cognitive load, and unsupported workarounds.
Module 05
Stigma and institutional response
- The system treats difficulty complying as information rather than a character failure.
- Policies distinguish safety needs from punishment or moral judgment.
- People with lived experience have real influence over how the service is designed and evaluated.
- Feedback can be offered without risking retaliation, loss of service, or unwanted exposure.
Measures: moralization, punitive response, participant governance, psychological safety, and accountability.
Development path
From framework to credible instrument.
- Governance. Establish paid lived-experience, provider, research, privacy, and accessibility review.
- Construct definition. Define each concept and separate participant burden from provider burden and organizational maturity.
- Cognitive interviews. Test how different people understand each question.
- Bounded field test. Pilot with clear consent, minimum data, withdrawal, retention, and referral safeguards.
- Measurement review. Assess reliability, validity, bias, missingness, and whether the instrument causes harm.
- Publish limitations. Release what the measure can and cannot support before using it in decisions.