By Farrah Sheehan Deselle, MSN, RN, IBCLC
Perinatal Nurse Educator and Consultant
The PCORI MORE study aims to determine how to most effectively provide care to pregnant women with opioid use disorder. One of the issues that many pregnant people encounter in their engagement with health care professionals is stigma and judgment. They have often had negative experiences in their interactions with health care professionals and difficulty navigating the complicated system to receive quality, consistent and compassionate care.
COVID has made the challenge even greater because it has created more barriers to forming trusting relationships. While serving on the study advisory committee, many members have shared recent anecdotes of friends, family, and patients they know who have felt judged and sometimes even mistreated during their prenatal appointments or hospital stay. This results in families not wanting to return for important health care appointments and being even further isolated at a time when they need more support than ever.
Although providing compassionate care can feel overwhelming and like one more “thing to do”, especially during a pandemic, there are some simple steps that can be taken to help providers and patients have the best experience possible in each interaction.
If you are a mom/pregnant person/parent/family member:
1. Share your past experience – it’s ok to tell any member of the health care team (even the person on the phone) that you have had negative experiences in the past and that you are really wanting to build a trusting relationship.
2. Tell them what might be helpful for you, such as speaking slowly, repeating main ideas, writing things down, sending reminder emails or texts about appointments. Take some time to think about what you need before you see your provider, and share it with them.
3. Give feedback – its ok to tell the provider, nurse, or whoever you are interacting with, that you don’t like what they are saying or how they are saying it. If it’s confusing, tell them. If they are being abrupt, or they forget to tell you their name, let them know. You can also get a patient experience phone number, business card or email address to address your concerns more formally. If you are not sure what to do, call the main number to the hospital or clinic and tell them you have feedback from a visit. They will connect you to the right person or place to share what you need.
4. Bring a friend or family member (or have them call or zoom in during the appointment). One of the best things you can do to advocate for yourself is to have another person at your side. They might remember things you forgot and can give you the emotional support you need to speak up.
5. Most importantly, remember that you are in charge of your health care. It is your health, your body, your baby and your life. You deserve to be treated kindly, with respect and to be supported. Often times, if people are not doing that, it is not because they don’t want to, its because they forget or get busy and don’t pay attention. You can remind them and tell them what it’s like to be you.
If you are a health care professional or someone supporting a family who is coping with perinatal substance exposure:
1. Do one thing every day to remind yourself why you are doing what you are doing. What is your overall goal for caring for families?
2. Remember to be a human, not a robot. It’s important to use technology, checklists and technical skills, but it is equally (or more) important to practice being human.
3. Make eye contact.
5. Tell everyone your name AND your role.
6. Ask questions first – how are you doing?, what do you need today?, what are you most worried about?…
7. SLOW DOWN – health care is a busy place, but if you slow your words just a little bit, or take a moment to connect before jumping in to the task, the visit will likely be more efficient and the patient will feel more supported. This makes people more willing and able to learn, hear important information, and come back for care.
8. Validate, validate, validate. Name what you see your patient is experiencing or feeling and check in if it’s right. “Wow, this must be so scary for you.” Or “wow, it took so much courage to come and be seen for your pregnancy while you are still using heroin. Good for you for making this first appointment. Tell me what it’s like for you.” Validating builds trust and trust leads to healthy patient/provider relationship where what you say matters. Make it matter in every interaction by helping the patient feel safe, trust you and then be able to hear you.
For more information about how to provide compassionate and trauma-responsive care, check out:
Substance Abuse and Mental Health Services Administration’s document, “SAMHA’s Concept on Trauma and Guidance for a Trauma-Informed Approach” https://ncsacw.samhsa.gov/userfiles/files/SAMHSA_Trauma.pdf
More resources will also be available soon on The NH Center for Excellence website’s webpage on Trauma-Informed Care. The main website is https://nhcenterforexcellence.org/governors-commission/perinatal-substance-exposure-task-force/