Principle 9

Empower Caregivers

Resources to support you

Thought Starters

Explaining Biological Processes Explaining Data Explaining Clinical Trials Explaining Health-Related Finances Explaining Risks & Benefits

We believe that when caregivers are acknowledged and empowered they not only provide better support to patients, they create space to care for their own needs as well.

Caregivers or care partners are an essential part of the healthcare journey. Yet caregivers often receive little direct guidance. Our responsibility is to communicate in a way that gives caregivers the clarity, confidence, and tools they need to navigate patient support. This includes acknowledging their role, addressing their questions, and designing materials that speak to both patient and caregiver needs.

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UPL Rules

The UPL Rules provide detailed guidance on how each of the Principles can be applied in practice.

Below is a sample of rules pertaining to Empower Caregivers:

Rule 23. Remember that words, concepts, and colors can be interpreted differently depending on the socio-cultural background of patients.

Be mindful of inadvertently using words or phrases that might be off-putting or offensive to different cultural groups.
e.g., Avoid using sets of four when designing for those with Chinese or Japanese cultural backgrounds as this can be associated with death to them.
Patients from different cultural backgrounds may have different expectations around who is involved in medical decision-making. Be sensitive to the possibility of differences and don’t make assumptions.
Be mindful of how a color’s meaning may vary between different cultural groups.
e.g., In some Eastern cultures, red might represent good luck and prosperity, while in the West it can sometimes symbolize polarizing concepts of competition, vigor, and excitement, or aggression, warning, and danger.

Rule 24. Be aware of the holistic patient journey for your target audience and be sensitive to that when developing communications.

Be mindful of words that may take on different meanings for patients at different points in their journey.
e.g., A man undergoing treatment for prostate cancer may associate ‘digital’ with ‘digital rectal exams’ rather than an online resource.
Be mindful of the reader’s state of mind and adjust your tone accordingly.
e.g., Are they recently diagnosed and potentially feeling overwhelmed? Are they hopeful about a potential new treatment? Are they on the path to recovery?

Rule 28. Be mindful of how the human form, gender, ethnicity and race, and appearance are assigned and represented visually.

Acknowledge age, gender, and ethnic diversity when representing people.
Be sensitive to representations of the “average” family structure, body physique, patient profile, and other characterizations.
Include identifiable details and characteristics when they are necessary for supporting the message. Abstract the human figure where gender and ethnicity are not meaningful or significant.

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UPL Style Guide

The Style Guide offers detailed guidance on how patient and caregiver materials created with UPL should look and feel while also considering accessibility.

Style Guide topic examples related to Empower Caregivers include:

Writing

This is a starting list of questions that can be used to evaluate, guide, and improve writing and content:

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Thought Starters

The Thought Starters outline key challenges and learnings collected from interactions with patients, caregivers, healthcare providers, and other experts. They provide helpful starting points when designing materials that caregivers will use.

What you will find in the downloads:

Thought Starters

The Thought Starters include learnings that may help explain biological processes, clinical trials, health-related finances, risks and benefits, and data — all through the lens of supporting both patients and caregivers.