Equipping Caregivers for Difficult Conversations
The collaborative Wana Watunzwe (WAWA) project published an important communication guide designed for healthcare workers to have difficult conversations with families in Kenya,as well as for families to understand better aspects of palliative care and how this type of care could help their child living with a serious illness. The guide can also be used by parents, teachers, caregivers and communities supporting children with life-threatening conditions.
WAWA, meaning “Let the Child Be Cared For,” is a three-year initiative developed in partnership with the Ministry of Health in Kenya. This significant effort is supported by Foundation S – the Sanofi Collective and is led by the Kenya Hospice and Palliative Care Association (KEPCHA), alongside partners St Jude’s Global Palliative Care, Global HOPE Texas Children’s Hospital, International Children’s Palliative Care Network (ICPCN) and Global Treehouse. The WAWA project is dedicated to increasing children’s access to palliative care through training, advocacy and, critically, behaviour change communications.
Making Difficult Conversations Less Taboo
The Kenyan collaborative leadership team identified that conversations around serious illness and death are often avoided due to discomfort or fear, making it challenging for families and healthcare providers to address these sensitive topics openly. This taboo can hinder effective communication and prevent individuals from receiving the comprehensive support they need during difficult times. To best support providers in tackling this head-on, the team engaged a local stakeholder group, including caregivers and healthcare providers, to create a caregiver guide for the Kenyan context.
The Caregiver Guide: A Critical Resource
The practical guidebook aims to support providers as they have difficult conversations with caregivers and families to understand new aspects of care they may not have been informed of before. The caregiver guide is also:
Designed for accessibility and practicality: The guide is structured as a short, small, printable resource, making it readily available to healthcare workers.
Addresses taboo topics: By focusing on hard-to-talk-about issues such as the serious illness of a child, the guide helps facilitate these difficult discussions with tips and knowledge. It serves as a key resource for others in similar settings seeking to make difficult conversations less stigmatised.
Understands effective messages: This guide draws on what works in sharing information with families, including delivering ‘bad news.’
Listens to families: The development included sessions in which the team spoke with families to understand their real needs.
Built on a user-designed process: It also engaged other stakeholders and providers to develop the principles and content for the guide.
“If you’re caring for a child with a life-threatening illness, this guidebook is an invaluable companion. Developed with insights from caregivers and palliative care professionals in Kenya, it’s designed to walk alongside you through every step of the journey. Whether you’re a parent, teacher, or community member, you’ll find practical advice and emotional support tailored to your needs.”
Using Globally
The Caregiver Guide, a result of this collaborative process, offers an innovative and highly applicable approach to strengthening pediatric palliative care services globally. Supporting families facing challenging circumstances for their child and overcoming norms of avoiding discussing illness and even death are needed worldwide. This guide can serve as a place-specific resource that can benefit other providers having such conversations.
We’d love to hear how you are using this as a resource - send us a note at info@globaltreehouse.foundation.
Photo captions: Paediatric Nurse, Catherine Wakaba Nduta, showcasing the Caregiver Guidebook at the launch of the new tool in Nairobi, Kenya (first photo from the left) and healthcare workers in the Nairobi region gather for an Introduction to Children's Palliative Care training and were given a copy to refer to at their facilities at the county level (third photo from the left).