Raising parents' voices stillbirth advocacy toolkit: Parent’s version – Kenya

The Parent Voices Initiative: The Parent Voices Initiative (PVI) was developed by the Stillbirth Advocacy Working Group (SAWG) which is co-chaired by the International Stillbirth Alliance and the London School of Hygiene & Tropical Medicine and funded by the Partnership for Maternal, Newborn and Child Health. The purpose of the PVI is to raise the voice and participation of parents bereaved by stillbirth to strengthen advocacy for stillbirth prevention and post-stillbirth bereavement support. The PVI includes two projects, of which one is the Advocacy Toolkit Project. The pilot sites for this project are India and Kenya. You will be our pioneers in helping us learn how best to support parents bereaved by stillbirth to raise their voices!

The Advocacy Toolkit Project: The Advocacy Toolkit Project aims to provide a brief, simple advocacy training toolkit for stillbirth parent support organizations in places with large numbers of stillbirths, to introduce the concept and aims of advocacy related to stillbirth and provide guidance to support parents to learn about how to raise their voices to help ensure their views and needs are heard within their country’s health goal-setting agendas.

The Kenya Parents’ version of the Advocacy Toolkit Project: In Kenya, there are currently few stillbirth parent support organizations, and services and information for parents about stillbirth and its impact on affected families is limited. Further, we recognize that advocacy for stillbirth at a national level must start with action at the local level. Therefore, the focus of this Advocacy Toolkit is on Kenyan parents who have experienced a stillbirth and who understand the needs of others who may be going through the same, to help them to advocate for themselves and others toward providers, family and friends, and community leaders.

What is in this Toolkit? This Toolkit will provide you with information relating to the experiences and rights of parents after stillbirth and suggested approaches for advocating for better post-stillbirth care, including:

• Common challenges experienced by parents after stillbirth
• Expectations and rights of bereaved parents
• Basic steps of advocating for better care post-stillbirth at the facility and community levels
• Different types of advocacy strategies (self-advocacy and group advocacy)
• Challenges of advocacy work and coping strategies to meet these challenges

The Toolkit will also help you to:

• Learn more about stillbirths and why they happen
• Raise awareness and educate other parents about stillbirth
• Advocate in your community and with health leaders for increased resources for stillbirth bereavement support
• Amplify the voices and needs of affected parents related to stillbirth bereavement support within families, at health facilities, and in the wider community.

The “Talking about stillbirth/Talking about advocacy” Tool. These are questions for discussion with other bereaved parents, provided in pink boxes at the end of most sections. Talking about stillbirth can be difficult but it is the start of conversations that can open doors to change for support after stillbirth.

The “Information Brief” Tool. This is a series of 1 to 2 page summaries of key topics related to stillbirth, some of them with infographics. You can skip to Briefs that are most interesting to you, or go through them in order. The Information Briefs are designed so that they can be downloaded and printed easily.

The “Fact Sheet” Tool. For some topics, we have provided some in-depth data for you to review, presented in a tabular or list format. These can also be printed out separately to facilitate discussion.

The “Dig Deeper” Tool. This is a list of links to some online resources that you can visit if you want to know more.

The “Parents’ Perspective” Tool. These are case stories and photos that give the real voices of parents who have experienced stillbirth. These can be used as discussion starters or simply shared with other bereaved parents to help them reflect on their experiences.

The “Checklist” Tool. We have provided some checklists for situations when you may want easy-to-use reminders for your advocacy work. These could be posted in a community meeting room or used as a point of discussion with advocacy targets such as clinicians, etc.

The “Guidelines” Tool. These are lists of ‘what to say’ and ‘what not to say’ that could be helpful at any point in advocating for better stillbirth care.

We hope the information and suggestions in this Toolkit will enable you to further strengthen stillbirth care and support.

The Toolkit has been refined based on a series of workshops in Kenya with parents.

The information in this Toolkit is based on the best and most recent evidence available on stillbirths.

Ideally this Toolkit would be used as a training tool for parent advocates and parent support organizations.

This Toolkit could also be used directly by bereaved families of stillborn babies (or those with earlier pregnancy losses) and by other relevant groups and individuals.

You may wish to review each module on your own. Questions for discussion are provided in the green boxes throughout the Toolkit, which could be prompts for informal discussion with other bereaved parents.

This Toolkit can be adapted in several ways. These include:

• Translation into local languages, being mindful to use culturally appropriate language, especially when translating the word “stillbirth”.
• Editing a module to make it more relevant for specific types of parents (e.g. parents in other parts of the country) by including examples from these groups.
• Information from different modules can also be combined to create a new module for you to use as you see best.

If you have questions regarding adapting the Toolkit for your setting, feel free to contact ISA at info@stillbirthalliance.org for more information.