DO LISTEN.
Parents want us to listen - really
listen - to their experiences.
DON’T BE INCONSISTENT OR UNRELIABLE.
Call when you say you will,
feedback when you promised
and set clear boundaries.
DO COMMUNICATE
REGULARLY and CLEARLY.
Parents want to know how they are
making a difference by sharing their
story. So, set clear expectations for
the project and regularly share
progress and outcomes.
DO BE MINDFUL
of potential
triggers.
DON’T JUST TICK A BOX.
Meaningfully engage parents
in discussion - make them feel
valued. Be aware of unequal
power dynamics. There is a
risk of tokenism and losing
the parent perspective.
DON’T MAKE
ASSUMPTIONS - JUST ASK.
Don’t assume families won't
want to take part, for example,
they are too busy, or it's too
soon after the child's death.
DO SET BOUNDARIES.
Be clear about how you'll work together,
why you are asking them for certain
information and act on their feedback.
DO TAKE THE TIME TO
BUILD RAPPORT.
Parents want us to take the time
to understand their story; and be
active co-creators of the project.
DON’T DISREGARD THE PARENT VOICE.
Don’t consult with families
and then do what you
think is right anyway!
DO CARE.
Offer parents
the support
that they need.
DON’T SHARE ANYTHING WITHOUT CONSENT.
Parents must consent to their words and
experiences being shared. Even if it is
anonymised.
DON’T USE INSENSITIVE LANGUAGE.
Check the terminology that parents want you to use.
For example, is ‘terminally ill child’ appropriate?
DO ENGAGE WITH A DIVERSE GROUP OF PARENTS.
Personalise activities, communication styles and ways to
engage to meet parents’ needs - whether that be mums,
dads, and families of different backgrounds.
DON’T ASSUME
EVERYONE CAN
USE TECHNOLOGY.
Be mindful of digital
exclusion, and work with
families to find the best
way to communicate.
DON’T USE JARGON.
Agree together with
parents what key
terminology will be used
in your interactions.
DO RESPECT PARENTS’ CHOICES.
Choices families make are different - we need to
be respectful that not all parents want the same
thing. Parents may wish to contribute differently
depending on the day.
DO MAKE ENGAGEMENT FLEXIBLE.
Consider online, in person or home visits
to support and work with parents.
Working with parents of children with serious illness and bereaved pa
Laura Evans
Created on July 9, 2024
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Transcript
DO LISTEN.
Parents want us to listen - really listen - to their experiences.
DON’T BE INCONSISTENT OR UNRELIABLE.
Call when you say you will, feedback when you promised and set clear boundaries.
DO COMMUNICATE REGULARLY and CLEARLY.
Parents want to know how they are making a difference by sharing their story. So, set clear expectations for the project and regularly share progress and outcomes.
DO BE MINDFUL
of potential triggers.
DON’T JUST TICK A BOX.
Meaningfully engage parents in discussion - make them feel valued. Be aware of unequal power dynamics. There is a risk of tokenism and losing the parent perspective.
DON’T MAKE ASSUMPTIONS - JUST ASK.
Don’t assume families won't want to take part, for example, they are too busy, or it's too soon after the child's death.
DO SET BOUNDARIES.
Be clear about how you'll work together, why you are asking them for certain information and act on their feedback.
DO TAKE THE TIME TO BUILD RAPPORT.
Parents want us to take the time to understand their story; and be active co-creators of the project.
DON’T DISREGARD THE PARENT VOICE.
Don’t consult with families and then do what you think is right anyway!
DO CARE.
Offer parents the support that they need.
DON’T SHARE ANYTHING WITHOUT CONSENT.
Parents must consent to their words and experiences being shared. Even if it is anonymised.
DON’T USE INSENSITIVE LANGUAGE.
Check the terminology that parents want you to use. For example, is ‘terminally ill child’ appropriate?
DO ENGAGE WITH A DIVERSE GROUP OF PARENTS.
Personalise activities, communication styles and ways to engage to meet parents’ needs - whether that be mums, dads, and families of different backgrounds.
DON’T ASSUME EVERYONE CAN USE TECHNOLOGY.
Be mindful of digital exclusion, and work with families to find the best way to communicate.
DON’T USE JARGON.
Agree together with parents what key terminology will be used in your interactions.
DO RESPECT PARENTS’ CHOICES.
Choices families make are different - we need to be respectful that not all parents want the same thing. Parents may wish to contribute differently depending on the day.
DO MAKE ENGAGEMENT FLEXIBLE.
Consider online, in person or home visits to support and work with parents.