How to start advocating for change on stillbirth

• It is helpful to think about the advocacy process as a series of steps that you can learn. Most of those steps relate to preparation! Before you even begin to “advocate,” you will want to have determined your goal, thought about how you will proceed, and developed a plan.
• In order to make your advocacy efforts effective, you need to:
  • Identify the problem or issue you are trying to address
  • Break down the problem
  • Educate yourself
  • Identify your rights/preferences/entitlements or societal expectations related to the problem
  • Develop a solution (goal) and strategy to address your challenge
• Goal setting can be different if you are doing self-advocacy. Oftentimes, this type of advocacy strategy is spontaneous, for instance if you would like to address a challenge right away. You may not formally set a goal, but still have an agenda in mind. However, regardless of the type of advocacy you are doing, it’s critical to clarify what you would like to achieve.
• We’ve explored the definition, aims, and types of advocacy, some key skills you need, and the importance of advocacy for stillbirth prevention and respectful bereavement care.
• It is important to choose an advocacy strategy that works for you, whether self-advocacy or group advocacy. Your choice will depend on the issue that needs to be changed, availability of resources to support your strategy, and your personality style. It’s key to note that both self and group advocacy strategies can be implemented either formally or informally. These two types of advocacy strategies have different ways of execution, but either is a valid approach.

• Apart from the practical steps of preparation for doing advocacy, it’s also important to check in with your emotional self. Advocacy in any form can open up unhealed emotional wounds connected to your stillbirth experience. That’s why it’s equally essential to explore whether you are psychologically ready to pursue any form of advocacy strategy. 
• It’s easy to interpret challenges or roadblocks to stillbirth support through the lens of our personal experiences. However, sometimes, what went wrong for you, might have been right for someone else.
• For example, one bereaved mother might have received the best care at Facility X, while a fellow bereaved mother might have received the worst experience at that same facility.
• The differing experiences of these two bereaved mothers shows that training in respectful bereavement care should be provided for all healthcare professionals, and the mother who had received poor care could decide to advocate for this type of training.
• However, she might say to herself, "I felt so angry because a certain mom praised her doctor for being so supportive during her stillbirth experience."
• A helpful question for that mother to ask herself in this context would be, "Am I reacting angrily towards that doctor, or towards my past hospital experience where I was treated indifferently?"
• This mother might then reflect, "The most probable response would be that I’m reacting towards my hospital experience. This means there is unresolved anger. It would be great to work on my feelings of anger and grief before engaging in any advocacy work."

The above content is adapted from Teacher’s Guide, Freedom Self-Advocacy Curriculum, National Mental Health Consumers’ Self-Help Clearinghouse (April 2000 Pilot Version), p. 18.

• A stakeholder analysis highlights which institutions and individuals have a stake in an issue, as well as their interests, support or opposition, influence and importance. A stakeholder analysis involves four steps:

The stakeholder power analysis has been adapted from TASCO, SIPU International. (2011). Advocacy and Policy Influencing for Social Change.

• Another key tool is power analysis, which builds on stakeholder analysis. A power analysis helps in identifying more details about the key decision makers (both institutional and individual) who hold power or influence over the issue you are advocating to change.
• The task is to identify who makes the decisions and who can directly influence these decisions. Remember: Decision-makers can be allies or opponents!
• Examples of possible decision-makers including the Cabinet secretary in charge of the Ministry of Health, a senator, a member of Parliament, staff in hospital management, or the chief of a local area.
• The diagram below illustrates the basic concept of power analysis; for instance, a leader may be in a position of influence but have low interest in your advocacy initiative, whilst another leader has limited power but is highly interested in your cause.

This image has been adapted from the UNSCR United Nations Security Council Resolution 1325 (2000) Advocacy Training Manual.

• Prevention technique: It’s very common to experience opposition while pursuing your advocacy strategy, whether using self-advocacy or group advocacy. Planning in advance will help you figure out what to do and how to convince potential opponents to either join or not to actively oppose you.
• Meeting people/organizations with opposing views: It would be great to hear their opinions and you may find that the apparent opposition is caused by miscommunication or lack of understanding about the issue.
• Developing win-win solutions: Exploring the solutions that would possibly meet both of your shared interests can help in dealing with your opponents.
• Turning negatives to positives: If attacked by your opponents, whether in legal cases or confrontations, you can transform the words of the attack into educational and advocacy material to help your community better understand what you are facing, and hopefully to gather their sympathy and support.
• Act preemptively to build stronger relationships with those who MAY be opponents, so that they end up as allies instead: For instance, some bereaved parents face cases of stillbirth related to provider negligence, e.g. if providers ignored their concerns during pregnancy or labor such as reduced fetal movement. It is possible that building stronger communication and mutual respect in provider-patient relationships can reduce instances of mothers’ concerns being dismissed, ultimately leading to better outcomes for mothers and babies. However, it is also important that parents ought not to blame themselves for the quality of their relationships with their providers.
• Consider your opponents’ position: Your opponent may in fact also be seeking solutions to the challenges you have identified but due to lack of information, they may have given up or even be opposed to your solutions (perhaps the solutions appear too costly or ineffective to them); if so, your group may be able to join in their effort. For instance, they may be aware of the mental health challenges experienced by parents bereaved by stillbirth but they haven’t figured out yet the basic strategies to address this challenge or feel they are not worth the investment. You can educate your opponents and turn them into allies.

• Overcoming these challenges and moving forward with your advocacy work requires core advocacy skills, including:
  • Strategic thinking skills, to help you to identify your goals, ideal allies and targets that you can work with as you address the challenges in your community/society.
  • Persuasion skills, to help get others to support your position. This is especially true if you will have an ongoing and hopefully collaborative and constructive relationship with allies.
  • Communication skills, including being respectful and confident in spoken and written language.
  • Patience, since advocacy work is a process that can take a long time.
  • Resilience, to help you in navigating challenges.
  • Collaborative skills, to ensure effective interpersonal and team work.

• As you start advocating for your rights or preferences either individually or within a group, it is essential to assess the impact of your advocacy activity.
• For example, you might have proposed to engage with a local hospital through creating a peer support group for bereaved parents. Your goal is probably to offer peer support and help parents get professional support if the need arises. As you go about implementing your advocacy activities, it would be helpful to assess their impact.
• For instance, you could collect feedback from the peer support group members and explore whether they feel supported. This would help you identify areas you need to improve on or decide whether to outsource further support, if possible.
• You should bear in mind that you might not achieve all your intentions through one cycle of advocacy work; this is totally understandable. Small advocacy efforts will ultimately produce bigger results in time.
• Assessing your progress can include:
  • Keeping records of meetings attended or conversations with friends/family/colleagues/community leaders or healthcare professionals.
  • Following through on conversations about stillbirth in the healthcare system, or with community leaders, research organizations, policy leaders or the media.
• It would be helpful to evaluate your impact through asking questions such as:
  • Have I achieved my goals or intentions?
  • How many meetings have I had with targets: an employer, a friend, a doctor or community leader?
  • What were the outcomes of those meetings?
  • What actions were taken by these targets: an employer, a friend, a doctor or community leader?
  • Is the situation better than before? In what ways?
  • If there is no change, how might I change my advocacy methods?
  • What would I do differently next time?

What to say to bereaved parents: 

• Use simple and straightforward language
• Be comfortable sharing emotions
• Listen to the parents
• You can say:
  • "I'm sorry"
  • "I wish things could have ended differently"
  • "I wish this pregnancy turned out as you had hoped"
  • "This must be hard for you"
  • "I am sad for you"
  • "I’m here; I want to listen"

What not to say to bereaved parents:

• "It was God’s will"
• "I know just how you feel"
• "Now you have an angel in heaven"
• "At least you have other children"
• "Be strong"
• "It was not meant to be" (or any mention of fate)
• "At least you know you can get pregnant"
• "It was just a cluster of cells"
• "At least it was nice and early"
• "Everything happens for a reason"