Infant Nutrition, Best Practice and the Mom/Baby Dyad: Statement on “Fed Is Best”

Recently, the Fed is Best (FIB) Foundation blog blasted social media with a story about an infant named Landon who died at 19 days of age from hypernatremia dehydration. All of us who work in medical and allied medical professions are saddened when such events occur. We question our practice; not wanting it to happen again. The International Childbirth Education Association (ICEA) Board of Directors sends our heartfelt sympathy to Landon’s family.

ICEA stands behind “Freedom to Make Decisions” with all issues and practices encompassing the perinatal period. With that, we need to be diligent in understanding the whole issue. The FIB Foundation is promoting their agenda that exclusive breastfeeding is dangerous. This information is not based on evidence and best practice but rather on rare but scary events.

Exclusive breastfeeding is safe and is the method of infant nutrition endorsed by national authorities including: Centers for Disease Control (CDC), the American Academy of Pediatrics (AAP), the American Academy of Breastfeeding Medicine (ABM), American Academy of Family Physicians (AAFP) and the Association of Women’s Health, Obstetrics and Neonatal Nurses (AWHONN). Additionally, the same practice is endorsed from international authorities such as the World Health Association (WHO), the Canadian Pediatric Society (CPS), and the United Nations International Children’s Fund (UNICEF).

As educators, doulas, lactation professionals, and other allied professionals working with families, we need to remember that there are rare cases that can lead to bad outcomes without further assessment and close follow up care. The Baby Friendly Hospital Initiative (BFHI) is the designating body assisting hospitals with meeting the 10-Steps to Successful Breastfeeding.  Hospitals working under this designation should be using the Guidelines and Evaluation Criteria which state that “additional individualized assistance should be provided to high risk and special needs mothers and infants, and to mothers who have breastfeeding problems”. For many reasons, one being that it was over five years ago, we do not know the specifics behind Landon’s death. Many professionals have questions that cannot be answered. However, it has come to light in news reports that there were possibly some critical factors that put Landon at high risk.

FIB Foundation is promoting that babies should be given formula supplementation as a standard in hospital settings to avoid this type of tragic situation. It is imperative that we remember that rare events should not dictate standard practiceFormula is not risk free and does change the infant’s gut. Changes to the gut can have long term health consequences. Additionally, it can negatively impact the establishment of mother’s milk supply and effect the ability for long term breastfeeding success.

Occasionally, the decision is made to use formula and that falls within the Guidelines and Evaluation Criteria of BFHI. This should be an educated decision between mom and care providers after close assessment, monitoring, and attempts to ensure adequate milk transfer. Hand expression and alternate feeding method are the first choice for supplementation, banked human milk (if available) is the next best alternative. Artificial milk (formula) should be the last choice when supplementation is necessary.

Fed is Best is operating on scare tactics that undermine a woman’s confidence in her body and her baby. Additionally, they are creating a false idea that exclusive breastfeeding practices are rigid and don’t allow for feeding choice or alternate care plans when necessary. Withholding food has never been the agenda of BFHI or other practices that promote exclusivity. Professionals and parents need to have open dialogue about their feeding decisions. Childbirth educators, doulas, and lactation professionals are in the unique role to help guide parents with education and decision making to make the best choice for their baby on an individual basis.

Policy Statements

http://www.aafp.org/about/policies/all/breastfeeding.html

http://www.aafp.org/about/policies/all/breastfeeding.html

http://www.jognn.org/article/S0884-2175(15)31769-X/abstract?utm_source=awhonn.org

http://www.cps.ca/documents/position/baby-friendly-initiative-breastfeeding

https://www.unicef.org/nutrition/index_breastfeeding.html

http://www.babyfriendlyusa.org/get-started/the-guidelines-evaluation-criteria

Supplementation Guidelines

http://pediatrics.aappublications.org/content/pediatrics/early/2012/02/22/peds.2011-3552.full.pdf

http://www.bfmed.org/Media/Files/Protocols/Protocol%203%20English%20Supplementation.pdf

Other Responses to FIB Foundation

https://www.unicef.org.uk/babyfriendly/hypernatremic-dehydration-news-coverage-response/

https://www.babyfriendlyusa.org/get-started/the-guidelines-evaluation-criteria/individualized-care

http://www.huffingtonpost.co.uk/amy-brown/why-fed-will-never-be-bes_b_12311894.html

The World Breastfeeding Trends Initiative

By Donna Walls, RN, BSN, ICCE, IBCLC, ANLC

The World Breastfeeding Trends Initiative was developed by IBFAN (the International Baby Food Action Network) to provide assessment of policy and programs that impact infant and young child feeding, identify gaps and provide recommendations to countries around the world. In the United States the Initiative was sponsored by The Healthy Children Project.

The Global Strategy for Infant and Young Child Feeding is a guiding document for the initiative. It was adopted by the World Health Assembly  and UNICEF in 2001 and established as a framework with ten action areas to support optimal infant feeding. The specific objectives are to:

  • Raise awareness regarding the main problems affecting infant and young child feeding
  • Identify approaches to solution
  • Provide a framework of essential interventions
  • Increase the commitment of governments, international organizations and other concerned parties for optimal feeding practices for infants and young children
  • Create an environment that will enable mothers, families to make and implement informed choices

Another guiding organization is the Baby-Friendly Hospital Initiative (BFHI) which is an initiative by WHO and UNICEF, providing a program to protect, promote and support breastfeeding in hospital and maternity facilities. The initiative follows the ‘Ten Steps for Successful Breastfeeding’ and ensures adherence to the Code of Marketing of Breast-milk Substitutes.

According to Victora et al (2016) and Rollins et al (2016) breastfeeding could save 820,000 lives annually,  preventing 13% of all deaths of children under five. Breastfeeding could reduce one third of respiratory infections and about half of all diarrhea episodes in low and middle income countries. Breastfeeding has been shown to improve the health and survival of all children.

Globally, optimal infant and young child feeding data shows only 44% of the children born initiate breastfeeding within one hour of birth, only 38% are exclusively breastfed for 6 months, 65% get adequate and appropriate complementary foods at 6-8 months and just 49% continue to breastfeed for at least two years. (WHO, UNICEF)

The assessment was developed to establish a baseline of national policies and programs in place to support optimal infant and child feeding. Scores were provided in a colour- coded rating in Red, Yellow, Blue or Green. In this tool, a score of 90% and above is coded green and considered to be maximum achievement. The other three colours in descending order of performance are Blue, Yellow and Red.

The Assessment Indicators

Part 1 included assessment of policies and programs:

  1. National Policy, Programme and Coordination
  2. Baby Friendly Hospital Initiative
  3. Implementation of the International Code of Marketing of Breastmilk Substitutes
  4. Maternity Protection
  5. Health and Nutrition Care System
  6. Mother Support and Community Outreach
  7. Information Support
  8. Infant Feeding and HIV
  9. Infant Feeding During Emergencies
  10. Mechanism of Monitoring and Evaluation Systems

Part ll assessed practices:

  1. Percentage of babies breastfed within one hour of birth
  2. Percentage of babies 0<6 months of age exclusively breastfed in the last 24 hours
  3. Babies are breastfed for a median duration of how many months
  4. Percentage of breastfed babies less than 6 months old receiving other foods or drinks
  5. Percentage of breastfed babies receiving complementary foods at 6-9 months of age

The United States scored very poorly, with a 37.0 on part 1 and a 31.0 on part 11 for a total of 68.0. The summation of the USA scores can be seen in the report.

Areas for improvement include: increasing mothers initiating breastfeeding within the first hour after birth, improving exclusive breastfeeding rates through the first 6 months of life and increasing the mean duration of breastfeeding. The U.S. scored high on monitoring systems in place but still has work to do on developing national policies supporting breastfeeding (including maternity protection), encouraging hospitals to become designated as Baby Friendly (including evidence-based education to all health care providers working with pregnant and new mothers), implementing the International Code of Marketing of Breastmilk Substitutes, and developing policies for specific conditions such as HIV and breastfeeding in emergencies.

For more information on the WBTI and comparing the US with other countries around the world, go to their website.

References
UNICEF 2015. State of World Children.http://data.unicef.org/resources/the-state-of-the-worlds-children-report-2015-statistical-tables/#
ICN 2 Second International Conference. on Nutrition. http://www.fao.org/about/meetings/icn2/en/
WHO & UNICEF 2016. Baby-friendly hospital initiative congress http://www.who.int/nutrition/events/2016_bfhi_congress_24to26oct/en/
Victora CG, Bahl R, Barros AJD, Franca GVA, Horton S, Krasevec J, Murch S, Sankar MJ, Walker N, Rollins NC, for the Lancet Breastfeeding Series Group. Breastfeeding in the 21st century: epidemiology, mechanisms, and lifelong effect. Lancet 2016; 387: 475-90 Rollins NC, Bhandari N, Hajeebhoy N, Horton S, Lutter CK, Martines JC, Piwoz EG, Richter LM, Victora CG, on behalf of the Lancet Breastfeeding Series Group. Why invest, and what it will take to improve breastfeeding practices? Lancet 2016; 387: 491-504. Victora CG, Horta BL, de Mola CL, Quevedo L, Pinheiro RT, Gigante DP, Goncalves H, Barros F. Association between breastfeeding and intelligence, educational attainment, and income at 30 years of age: a prospective birth control study from Brazil. Lancet Glob Health 2015; 3: e199-205. http://www.thelancet.com/pdfs/journals/langlo/PIIS2214-109X(15)70002-1.pdf
The Sustainable Development Goals Report 2016.http://unstats.un.org/sdgs/report/2016/The%20Sustainable%20Development%20Goals%20Report%202016.pdf United Nations Children’s Fund, Breastfeeding on the Worldwide Agenda: Findings from a landscape analysis on political commitment for programmes to protect, promote and support breastfeeding, New York, UNICEF, 2013 WHO & UNICEF 2015. Advocacy Strategy Breastfeeding Advocacy Initiative http://apps.who.int/iris/bitstream/10665/152891/1/WHO_NMH_NHD_15.1_eng.pdf?ua=1 Horton S, Shekar M, McDonald C, Mahal A, Brooks JK. Scaling up Nutrition What will it cost? World Bank 2010. http://siteresources.worldbank.org/HEALTHNUTRITIONANDPOPULATION/Resources/Peer-Reviewed-Publications/ScalingUpNutrition.pdf The World Braestfeeding Costing Initiative. The need to invest in babies 2014. http://www.worldbreastfeedingcosting.org/wbci/TheNeed-to-Invest-in-Babies.pdf The World Braestfeeding Costing Initiative tool 2014. http://www.worldbreastfeedingcosting.org/wbci/WBCi_Ver_1_2016.xlsm Walters D, Horton S, Siregar AYM, Pitriyan P, Hajeebhoy N, Mathisen R, Phan LTH, Rubert C. The cost of not breastfeeding in Southeast Asia.Health Policy and Planning 2016, 1-10. Shekar M, Kakietek J, Eberwein JD, Walters D. An Investment Framework for Nutrition: Reaching the global targets for stunting, anemia, breastfeeding and wasting. World Bank 2016. http://documents.worldbank.org/curated/en/847811475174059972/pdf/108645-REVISEDPUBLIC-1700369-GlobalTargets-Execsum-Web-10-3-16.pdf Alderman, Behrman and Puett 2016; Copenhagen Consensus Center 2015; Hoddinott et al. 2013). Lutter CK and Morrow AL. Protection, Promotion, and Support and Global Trends in Breastfeeding. AdvNutr 2013; 4: 213219

Remembering Connie Livingston

By Michal Klau-Stevens

I was shocked to learn, on December 29, 2016 when I scrolled through my Facebook feed, that ICEA President Connie Livingston had died suddenly. The post from Barbara Harper caught me off-guard, and left me grappling with the discomfort of processing the loss of a person whom I liked, respected, and felt deep gratitude towards, but had never actually met. Almost all of my interactions with Connie were through social media. I can’t help but think that my life would have been richer if I’d had the opportunity to know her in person too.

Connie was one of the first people to reach out to me through LinkedIn when I started posting my blog posts there. At that time, early in my experience as a blogger, I felt mild panic each time I pushed “publish” on my computer screen, and then it seemed my words went out into the ether and disappeared into nothingness. The kind words in those messages from Connie let me know that my work didn’t disappear – and the fact that the President of ICEA took the time to reach out to connect with me to say that she appreciated my viewpoint meant the world to me. After several months of posting on LinkedIn, Connie asked me, through a private message, if I’d be interested in writing for ICEA. It took a while to make it happen, but her interest inspired me to keep writing and posting on my blog.

Soon we became friends on Facebook, and she regularly commented on my posts, both personal and birth-related. Posts from her frequently showed up on my feed, accompanied by pictures of her smiling face. She was often out with her husband or posting about her children. I remember one tantalizing string of posts she wrote about going out for waffles for breakfast with her daughter, and she and I frequently exchanged posts about guinea pigs. She liked to show off her beloved pet, and I posted her back with the antics of my son’s guinea pig too. Connie posted great birth-related information, and focused on evidence-based care and compassionate treatment for birthing women and their families. I enjoyed reading her blog posts, as I always learned some new and valuable information from her insights.

Earlier in the past year, Connie experimented with another social media platform called Blab, which allowed people to host video chats. Betsy Schwartz, a doula trainer and creator of the board game Down The Canal, was doing chats on Blab and I made of point of joining her in the chat room. Connie came online to watch several chats and interact with us, and before long she was hosting her own Blabs about birth-related topics.  I joined in for a couple of her broadcasts, and it was almost like being in the same room, but not quite. I was impressed with Connie’s bravery to quickly organize her plan and put herself out there to the public on a new, glitchy, visual platform. I was struck by the way she charged forward to seize an opportunity to share her knowledge with others and to interact with people who were interested in talking and learning about birth. That was another valuable life lesson she taught me – seize the day!

It can be hard to get a sense of a person when you only interact through social media, yet there were certain things that came through very clearly. She was a devoted wife and mother, a businesswoman, author, leader, and teacher. Knowing her made me want to work harder and do more so I could achieve like she did, and make a difference by helping others too, as she did. She was a true role model.

Reading the comments and posts after her death made me feel the loss of not knowing her in person even more deeply. So many people wrote about the influence she had in their lives. She touched many birth workers and families in her work over the years, and the posts about her warmth, her sense of humor, her compassion, her wisdom, and her caring were overwhelming.

Thinking about the fact that I won’t be seeing more posts from Connie fills me with sadness. As a former leader of a national birth advocacy organization, I can imagine how her sudden absence will send shock waves through ICEA and the larger birth community as people work to come to terms with this loss of a strong leader who was also a wonderful person. I can only guess, based on what I know from her activity on social media, that she would want her colleagues and students to carry on her work of improving the birth experiences of families through high-quality and compassionate childbirth education, birth support, and advocacy work.

I am so grateful to Connie for giving me the opportunity to contribute to the ICEA community through this blog, and I will do my best to remember the way she had confidence in me and saw value in what I have to share with others. Although much of our relationship was “virtual,” the impact she had on my life was very real. Her death is a great loss to many people and her life was an example of much impact one person can make in the world. She will be missed.

A Tribute to Connie Livingston

By Jamilla R. Walker RN, IBCLC

15826759_10100343898202328_1562172989101568866_nPurely due to the demands of life and the decision to pursue taking on another job outside the home, I’d resigned as the blog manager once 2017 began. While I anticipated writing an end-of-the-year blog for ICEA, I could never in a million years have imagined it would be on this topic.

Social media has been flooded lately with posts about how 2016 needs to end because it keeps “taking” celebrities. Every time I see that, I remember how this happens every year. Every year it’s like there’s some death tax that people can get out of paying if they die before the start of the next year. And every end of December, we strain for the new year to begin so we can be done saying goodbye to greats.

But then I got a message from Barbara Harper last night, telling me how sad she was for Connie. Our dear ICEA President had been given terrible news this past month, with a diagnosis of stage 4 pancreatic cancer for her beloved husband and best friend, Jim. If you’ve had anything to do with Connie Livingston, you know of her complete adoration for Jim. We’ve all been shocked and saddened by his illness, so I assumed that was what she spoke of and agreed that it’s terrible news. My slowness to compute what she was trying to tell me led to me making her spell it out for me. Just like they tell medical providers – it’s not real for family members unless you say the words.

“She coded and DIED?”

“Yes, honey. She died.”

My heart simultaneously lept into my throat and crashed into my stomach, leaving me breathless. I slept fitfully, waiting for the news to break on social media and then torturing myself by reading all the tributes people were posting. We all say the same thing. We’re all reeling from the unexpected devastation.

Connie Livingston was a leader in the birth industry – as a doula, childbirth educator and administrator. Her tenacity and passion for the birth community were second to none, as were her high standards for every organization she laid hands on throughout her career. And while that is impressive, that’s not what has us all walking around in a hazy cloud of grief today. It is how she interacted with all of us that has made us love her, and what is leaving a massive hole in her wake. Connie was the single most encouraging person any of us have ever met. And when I say encouraging, I don’t just mean she was good at making us feel better about life – I mean that she saw our best, our greatest potential and did everything she could to call it out of us. That is essentially what a doula does – a great doula doesn’t just empower. To empower is to give someone power. She gave everything to make each of us see what was always there inside of us. To see what power we held to be game changers, to live our fullest potential as we served the birth community and our families together. She was like this with everyone in her life, to the point that she was typically pretty surprised and disappointed when people turned out not to be what she saw in them. As her friend, I always hated how much it would bother her when someone she’d decided to love turned out to be a jerk. It didn’t happen often, as she was a fantastic judge of character, but when it did – it was hard to watch her work out.

Because when Connie decided to love someone, it was a wholehearted act. You were counted as family and she’d bear hug the breath out of you when she saw you, no matter how much time had passed. The overwhelming consensus from all the social media posts was how many women she mentored over the course of her career. And we didn’t just call her our mentor – she was our mother, our sister, our dearest friend. The other thing about being her friend is how amazing she was at connecting us all. If you talked to her about a problem you were having, she’d know someone with the talent to help you work it out. If you became interested in a certain aspect of the birthing world, she’d send you someone’s phone number having paved the way for you to have a phone chat or Skype – and God forbid you express hesitation (“but Connie, are you SURE it’s ok that I assist Barbara Harper at this conference??”), she’d shoo away your concerns and say, “oh stop, we all put our panties on one foot at a time!”

Friends, what a blessing it was to her to see the outpouring of love for her and her family these last few weeks. She may be gone, but at least she left knowing she was loved. Now it’s time for us to take all the love she gave to each of us, and pour it out on Jim, Heather and Erin and they process this tragic loss. It’s time for us to raise our peppermint mochas in the air and say goodbye to our friend, sister, mentor, mother. We love you so much, Connie. You will be forever missed.

pexels-photo-286145
If you took Connie’s doula training, then you’ll remember the candle lighting ceremony at the end. She lit the flames of so many passionate birth workers, and it’s now our turn to carry her light as we continue the work she left for us.

Responsive Feeding

Our monthly words of lactation wisdom from Donna Walls

New information from UNICEF has been released supporting responsive feeding strategies for breastfeeding and for formula feeding, including breastfeeding mothers who bottle feed expressed milk exclusively or for return to work or school.

UNICEF defines responsive breastfeeding as “ a mother responding to her baby’s cues, as well as her own desire to feed her baby. Crucially, feeding responsively recognises that feeds are not just for nutrition, but also for love, comfort and reassurance between baby and mother.”

They also stress that responsive feeding makes breastfeeding and early parenting easier, less stressful and that breastfeeding will not spoil a baby nor can you overfeed a breastfed infant.

Responsive breastfeeding is generally regarded as instinctive for mothers but societal views and cultural attitudes can often hamper a mother’s natural instincts such as fear of breastfeeding in public.  Misinformation persists regarding scheduling of feeds and the need to train newborns to sleep longer are persistent and can have a negative effect breastfeeding and milk supply.

Responsive bottle feeding is defined as “encouraging mothers to tune in to feeding cues and to hold their babies close during feeds. Offering the bottle in response to feeding cues, gently inviting the baby to take the teat, pacing the feeds and avoiding forcing the baby to finish the feed can all help to make the experience as acceptable and stress-free for the baby as possible, as well as reducing the risk of overfeeding.”

Other tips for responsive bottle feeding include keeping the bottle horizontal during the feeding to minimize gulping and overfeeding and allowing for frequent pauses that occur naturally during breastfeeding. Responsive feeding allows the baby to be “in control” of the feeding and is related to better self-regulation of food impacting the later possibility  of obesity.

Beginning with smaller amounts of formula and gradually increasing the amounts slowly over the first weeks is also a more physiologic way of mimicking the normal pattern of feeding and may help to avoid stomach upsets, fussiness and unnecessary formula switching.

Encouraging cuddling time before, during and after feedings creates an opportunity for supporting the parent/child relationship and consider feeding while skin to skin to comfort and soothe infants during feedings,

For more information on responsive feeding go to:

http://www.ajol.info/index.php/sajcn/article/viewFile/97829/87130

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3040905/

Responsive-feeding-infosheet-UNICEF-UK-Baby Friendly Initiative.pdf

http://jn.nutrition.org/content/141/3/508.full

Helping Clients Build Personal Advocacy Skills: Step Four

The Power of the Birth Community

By Michal Klau-Stevens

There is a saying, “It’s not what you know, it’s who you know.” Community is a powerful mechanism for learning, accessing resources, and getting physical and emotional support. It also can either serve to make us feel alienated from others, or can reinforce or enhance our beliefs about our choices and our actions. In this post, which is part of a series on personal healthcare advocacy skills, we’ll explore the value of helping our clients connect with their birth community.

What is a “birth community?” It is the group of people who are active in working with expectant families, and it can be local, national, or online. Members of the birth community may include doctors, midwives, nurses, doulas, childbirth educators, lactation experts, chiropractors, activists, advocates, parents, and others with an interest in maternity care. The birth community may be well organized, such as a birth network with a diverse membership, or may be a loosely connected group of people with a willingness to share knowledge with people who seek information. Although many of the members of the birth community may be paid professionals in the healthcare field, healthcare practices with a business stake in caring for pregnant patients do not constitute the whole community, which includes those who are outside the medical establishment as well. The birth community is the group of people with expertise and passion about birth, and they are an excellent resource for clients who seek to advocate for themselves throughout their maternity care experience.

Meeting the birth community puts our clients on a fast track to information and empowerment. Imagine trying to learn something new all on your own. It’s a process of trial and error which can be time-consuming and frustrating. Maybe you’ll be successful with it, but maybe you won’t. Maybe it will feel too hard and you’ll give up. Now imagine that you have a supportive community to help you learn. Not only do you learn more, faster, you have experienced people who point out the pitfalls and the shortcuts, and you are not alone on your journey. When we help our clients connect with the birth community, we make it easier for them to get access to the resources they require to advocate for themselves to get their needs met.

Like any community, there are some people who have similar beliefs to us, and others who hold different beliefs from us. Who we choose to spend time with can shape the actions we take and how we think and feel about ourselves. Diversity in a community is a positive thing, since different people have different needs, and one size rarely fits all. Having a variety of resources and approaches allows more people to get what they need from participating in the community. Sometimes our clients need our help to identify who in the community will create a positive effect for them. For example, I had a client, a medical doctor, who followed attachment parenting practices. With her medical peers she felt uncomfortable talking about her parenting, and she often felt judged for the choices she made. With the other parents from her child’s preschool, who mostly followed attachment parenting practices too, she felt more comfortable and accepted. The suggestion that she develop her relationships with the parents from her child’s preschool, because that’s where she found more connections to solve the challenges she faced, provided a surprisingly simple solution for her. Similarly, helping our clients connect with resources in the birth community that align with their needs and their care philosophy lays the groundwork for them to find the solutions that work for them.

You can be the gatekeeper who introduces your clients to the larger birth community:

• Offer to attend meetings of the local birth network, birth circle, or breastfeeding support group with your clients. Having a “wingman” makes checking out a new group less intimidating, and it’s a great way for you to network and learn more about the resources in your community too.

• Maintain a list of local resources to share with your clients.

• Stay connected online with national and international experts through online forums.

• Make introductions between like-minded people who can be helpful to each other.

• Be open to answering the particular needs of seekers, even if they don’t become your clients. They might need or want something different than what you are offering as a service provider, but your reputation for helping them get the care that works best for them will be spotless.

We, as care providers, comprise the birth community. It’s important that we nurture our connections to each other and that we provide the knowledge, resources, and support that newcomers to our community need. We shouldn’t underestimate the power of offering a name or a piece of information to someone who is seeking help. That outstreched hand and welcoming embrace into the birth community can set people onto the path for an empowered birth, and we know what a difference that can make.

If you missed last month’s advocacy step, you can catch up here:

https://birthperspectives.com/2016/11/16/helping-clients-build-personal-advocacy-skills-step-3/

Helping Clients Build Personal Advocacy Skills: Step 3 

Maximizing Research for Healthcare Advocacy by Michal Klau-Stevens

There is so much information available on the internet about pregnancy, birth, and breastfeeding, but there’s one important type of information that will help your clients with their efforts to advocate for themselves with their care providers: peer-reviewed research. In this post, which is part of a series on healthcare advocacy skills, we take a look at the different types of information available to our clients, which types are most effective in helping them communicate with their doctors, midwives, and other care providers, and how we can help our clients make use of scientific research to make evidence-based healthcare decisions.

Scroll through any social media site and you’re likely to find posts about the latest discovery in healthcare. New sites report on studies that have been released, celebrities and advocates write blog posts, magazine reporters write articles, and people post about their personal experiences with one remedy or another. Maternity care advice, in particular, is everywhere. To many people, the information from a well-known news site, a magazine, and a blog post may all carry the same weight, but nothing could be further from the truth. Each step away from the original source of the data increases the addition of bias, conjecture, misunderstanding, and embellishment. And what is the original source of the data? Scientific research, and the gold standard for scientific research is the peer-reviewed study.

Peer-reviewed research has been critiqued by other professionals in the field, and been deemed worthy to publish in journals or other professional publications. It represents the highest standards of scientific inquiry. True, it has shortcomings, especially relating to maternity because of the ethics of doing research on pregnant women, but peer-reviewed research is some of the most useful information that our clients can use while advocating for themselves with medical professionals. It is the source of the evidence that creates the foundation for evidence-based practice, and is therefore hard for medical professionals to deny.

Unfortunately, peer-reviewed research rarely goes directly to the average maternity care consumer. It gets filtered through other sources before it gets to them, and those sources can be framed in a hierarchy of most reliable to least.

At the top of the hierarchy are government websites and publications, which are directed either at professionals or at consumers and detail the most up-to-date research from government agencies.

Next are sources such as brochures, websites, or pamphlets from medical, midwifery, nursing, and childbirth education professional organizations, such as the American Congress of Obstetricians and Gynecologists, The American College of Nurse Midwives, and the Association of Women’s Health, Obstetric, and Neonatal Nurses, and ICEA. This information tends to closely adhere to the findings in the research, but it still may be presented through the lens of the mission of the organization.

Below that are advocacy organizations that focus on particular causes, such as The March of Dimes and Childbirth Connection. Advocacy organizations may raise money for research, educate and raise awareness about a topic, and/or lobby for policy changes. These two organizations have excellent reputations for adhering to the evidence, but other organizations may not be as exacting and should be vetted for accuracy.

Below that are experts, who either work in the field or synthesize the research to make it understandable for others. They may work for a company or organization with a particular agenda, or work independently, with little oversight or accountability and only their reputation and income at stake. The quality of their work can range from very accurate to wildly inaccurate. Experts might author books, appear on television shows, offer educational programs, or promote their material in other ways, and the quality of the information they teach is dependent upon their adherence, or lack of it, to the research.

Further down the list are news sites, pregnancy sites, magazines, and television shows. Reporters, who may or may not be experts in the field on which they are reporting, gather the content on these sites. They rely on experts and others who have various kinds of experiences relating to the topic being covered. With each person the information passes through, the chance for bias to enter increases. Also, these are collaborative fields, in which editors filter and refine the information, but may do so in ways that further alter what gets through to the public. More importantly, these sources are usually commercial endeavors that focus on promoting information that will be of interest to their specific audiences and will sell advertising for revenue.

At the bottom of the list are personal blogs. These are like the wild west of the internet, where anything can be stated as fact or truth, but with almost no accountability or fact-checking.

With each step down in the hierarchy, more vigilance is required from the consumer to ensure the accuracy and lack of bias in the information. Healthcare professionals are unlikely to practice “internet medicine.” They need to work from reliable sources of information that align with standard of practice. Those sources are most likely to be at the top of the hierarchy of information. Information on the higher levels is most likely to be useful in advocating with medical professionals because it comes from the most accurate and most respected sources in their field. Using scientific data also puts the patient on a more even playing field with their caregiver, making the relationship less authoritarian and more of a partnership.

How can we help our clients use scientific research to their advantage? There are a few steps we can take:

• Help them access the peer-reviewed research through sites like PUBMED, Cochrane, university library databases, and through colleagues who have access to those sources.

• Help them read through the studies, which can be daunting for someone without experience in reading scientific research.

• Find the sources at the top levels that are in a format they can understand and are most likely to be acceptable to their caregivers.

• Find the reliable sources at the mid-levels of the hierarchy by doing the research about the organizations and the experts and vetting them yourself.

• Teach them how to be more discriminating about the information they are taking in, through discussions about media literacy.

As birth workers, we have a much better understanding of the range of information that is available to our clients, have experience reading research from reliable sources, have opportunities to teach our clients how to make sense of the data they encounter, and can be a resource for them for accessing high-quality information. We can be instrumental in helping our clients maximize scientific research to advocate for their healthcare needs.

Stay tuned for Step 4 next month!