Information vs Advice: A Guide to Self Advocacy

42weeks
From the moment you discover you are pregnant you are surrounding by a litany of ‘experts’ all encouraging you in different directions.

Where will you give birth? Who will attend you? Are you going public or private? Seeing an Obstetrician? Or midwife? Or staying at home? Is it safe? What about pain relief? What will you do with older children?

It can be confusing, overwhelming, and scary!

The best ‘advice’ is not advice at all but is clear and unbiased information which gives you everything you need to make the best decisions for you and your baby.

This is your body, your pregnancy, your baby, your birth. You are the best expert of you and your baby. Only you know what you are feeling and what is important to you. It is important that YOU are the one making the decisions which will affect you and your baby.

Medical experts can guide you and provide you with information, but they cannot make decisions for you. These decisions are too important to give to someone else. They are yours and you must be happy with the decisions you make.

Information vs Advice

‘Information’ and ‘advice’ are commonly used words but do we always know the difference and use them in the right context?

The Definition for Advice is:

ad·vice

/ædˈvaɪs/ [ad-vahys]
noun
1.an opinion or recommendation offered as a guide to action, conduct, etc.: I shall act on your advice.

Giving advice is suggesting or influencing a woman’s decisions with your own opinion, experiences, or rules (hospital policy).

Sentences which contain advice often use the following phrases:

“If it were me…..”                         “From my experience……”
“If I were you…..”                         “You ought to…. ”
“I think…..”                                  “You need to…..”
“You should…..”                         “I wouldn’t …….”
“I believe…..”                              “In this hospital, we…..”
“We don’t do that here”

Example of giving advice:

Mary had an uncomplicated first birth and is recently pregnant for the second time. She is fortunate to have an MLU and obstetric-led care available to her and is considering her care options for her new pregnancy. At the GP she mentions that she is thinking about midwife-led care and asks her GP for more information. Mary’s GP advises her that if there is a problem, Mary would be transferred to the obstetric-led unit anyway…and the GP thinks that as Mary had a good experience on her first baby, she should stay with the obstetrician she knows and trusts. The GP adds that she had her own 3 babies in hospital with that obstetrician and she found the care excellent.

The Definition for Information is:

in·for·ma·tion

/ˌɪnfərˈmeɪʃən/ [in-fer-mey-shuhn]
noun
1.knowledge communicated or received concerning a particular fact or circumstance; news: information concerning a crime.
2.knowledge gained through study, communication, research, instruction, etc.; factual data: His wealth of general information is amazing.

Giving information is providing a woman with all of the facts/options available to her, without trying to influence her, so that she can make the best decision for her and her baby .

Sentences which support information sharing may use the following phrases:

“The research shows….”
“When compared, X is shown to ____(benefit/risk)___ over Y”
“The information shows us…..”
“The benefits of……..”
“The risks of…….”

Example of giving Information:

Mary had an uncomplicated first birth and is recently pregnant for the second time. She is fortunate to have an MLU and obstetric-led care available to her and is considering her care options for her new pregnancy. At the GP she mentions that she is thinking about midwife-led care and asks her GP for more information. Mary’s GP goes through the findings of the HSE’s randomised clinical trial of the MLUs which showed better birth outcomes, high maternal satisfaction, and fewer interventions for low risk women. Mary’s GP also explains that some women will be required to transfer out of the MLU to obstetric-led care for pain relief or if there is a complication. Mary’s GP also explains to her the differences in policy and birthing aides between the two units.

Don’t Give Away Your Decisions

It is important to trust your healthcare providers in order to feel safe and supported in your care. Sometimes, we can confuse what trust looks like. Trust is feeling safe to ask questions knowing that you will be given unbiased information. Trust is knowing that your healthcare provider practices evidence-based care. Trust is being listened to. Trust is feeling supported to make informed decisions. Trust is being included in the decision-making process, having your birth preferences respected, and open communication with your care team to ensure you are supported to have the most positive healthy birth possible for you and your baby.

Trust is not handing over your decisions to someone else.

Trustworthy healthcare providers should not ask you to give your decisions away. They should not take your choices. They should not discourage you from asking questions, having preferences, or discussing you care plan. Trustworthy health care professionals do not say ” Not Allowed” or “hospital policy” or “it’s routine”. If your healthcare provider does not support your decisions, expects you to give your decisions away, or will not give you the information you need to make the best decisions for you and your baby, please ask for someone who will. Your baby’s birthday is special and you will never get this time back. You and your baby deserve a care provider who understands how special this day is – a healthcare provider you can trust to support your decisions and encourage you.

The decisions we make in labour and birth have serious consequences; for ourselves, our babies, and our future births.

Don’t give away your decisions to someone else. Be an active participant in your care. Have a read up on your care options and ask questions to enable you to be confident to make the best decisions for your and your baby on the day.

Self Advocacy

Clear, unbiased information should be available to all women in order to assist with decision making. However, this is a two way street. We as women must be our own advocates for our maternity care – understanding and representing our own views and preferences in our pregnancy, labour, and birth.

It can be hard to communicate what you need and ask for support or the care you want. It can feel intimidating, scary, or you might be worried about having the skills or understanding to get your point across.

These tips may help!

  • Be clear in your mind what you want from your maternity care and what is important to you in pregnancy, labour, birth, and after the birth of your baby
  • Base your preferences on high quality information – not advice or the opinions of others – understand WHY your preferences are important to you
  • Attend antenatal appointments with a partner/friend who supports you and your preferences and makes you feel strong, confident, and at ease
  • Ensure your birth partner is informed of your preferences and supports you
  • Write your preferences, questions and any concerns you may have down. Have several copies with you. It can be easier to communicate when you have something in writing to go by and refer to.
  • If there is something you do not understand or would like more information about, ask early in pregnancy so that you can come away and think about it before making a decision.
  • Communicate in a clear, calm, polite but assertive manner. This includes verbal and written communication.
  • When discussing your preferences or looking for information make sure you are speaking to the right person in the right department who is familiar with you and your care or the issue you hope to discuss.
  • Keep your own notes and a record of your appointments – who you spoke to, what information was discussed, what was agreed.
  • Time is your best friend – research care options and preferences before you are pregnant, discuss your preferences and concerns early in your pregnancy. The earlier your initiate discussions, the easier it will be to continue down a good communication path.

What Women Say:

“If I could turn back the clock I would ask for more information and less opinion on what happened to me and my daughter. I took advice from people who had totally different ideas and desires to me”

And:

“On my first I didn’t know what I should do so I asked my sister in law who just had a baby. She went to the Rotunda, so I went to the Rotunda. My GP booked me in as a public consultant-led patient – it was only after when I was looking into my second baby’s options (didn’t want to repeat the first) that I was told there was a midwives clinic”

And:

“everyone told me not to have a birth plan – that you can’t plan birth. This proved to be the biggest mistake of my life”

And:

“I was discussing induction as my baby was late and I kept asking the doctor for more information on why they wanted me to be induced but she just kept telling me that it was better for the baby to be born as it was dangerous if you went too over and that if it were her baby she’d opt for induction”

And:

“I am embarrassed by how un-informed I was on my first and even second babies. I cringe when I think of the pressure I put on that poor midwife asking her for her advice. We as women really need to start taking personal responsibility in what happens to us in pregnancy and labour and birth. I handed my body and soul over to anyone attending me in my births. I couldn’t make a single decision. This was not from lack of want from the midwife but I just wasn’t in a place to hear it back then”

And:

” I hate this ‘you are not allowed’ stuff from hospitals and the hse. Why do they get to decide and not me? I made the mistake of ALLOWING them to tell me I was ‘not allowed’ on my first baby. They said it and I accepted it – I gave them permission to take away my choices. Not this time.”

And:

“my advice is to take the time to really research what is important to YOU. Not what you think you should want… or what you think the midwives want you to want…. what you want. Once you decide, write it down and be firm and clear on what you expect from your care and what you are not willing to compromise on. Becoming an effective advocate is hard….. but it’s a lot easier than going through the complaints process after a birth that you aren’t happy about.”

What Midwives Say:

“As the labour progresses (or doesn’t as the case may be) she will ask me questions. Only 5 months in and I am no longer astounded by how little she knows about what is happening to her. People who avoid the antenatal class on labour because it’s “better not to know.” I have met many women who are happy to have finally been brought in for induction but have never even heard of syntocinon. I try to be honest without scaring them. I choose my language carefully and try to not to say anything that would be too worrying. How can you discuss the risks of induction when you are almost at the maximum rate of infusion? How is this the first time she has had this conversation? Why does she feel this was not a choice? Sometimes she asks me what she should do, what I would do. I try to offer the facts and ask her to decide herself. Sometimes she can’t. “WHAT WOULD YOU DO?”

And:

“I want to care for women who are present and involved and who know what they want. I don’t want to have to make or shape decisions for people, especially when these decisions are often so far removed from my own personal choices. And for the women who can’t be strong, who don’t know, who are scared, worried, nervous, or absolutely petrified, I want to be the kind of midwife who empowers them. I don’t want to just be a voice for them. I want to help them find their own, and I want them to use it.”

“No Thank You” – A Guide to Informed Decision Making

42 weeks helpful guide, “No Thank You” – A Guide to Informed Decision Making is designed to further assist you with tips and tools to help you look at issues around informed consent, informed refusal, and making the best decisions for your and your baby. The guide is available here.

When to write a complaint

Sometimes, the care women receive in pregnancy or during her labour, birth, or post natal care is not good enough. It is so important that women take the time to make a complaint if their care was lacking, or unkind, or unsafe. Complaints and sharing experiences is the only way we will ever see a change in practice.

There are several ways you can do this:

1) HSE – Your Service Your say: http://www.hse.ie/eng/services/yourhealthservice/feedback/
Please note, there is a time compliance with HSE complaints services. A written acknowledgement should be received immediately and complaints officers will look into your complaint within 30 days of the date of acknowledgement. If your complaint will take longer than 30 days for a reply, the complaints officer must acknowledge this within the 30 day reply timeframe and an update will be provided every 20 days. If the HSE does not comply to these terms, please contact AIMS Ireland at support@aimsireland.com

2) To make a complaint about a midwife or nurse – An Bord Altranais: http://www.nursingboard.ie/en/complaints_process.aspx

3) To make a complaint about a doctor – Medical Council: http://www.medicalcouncil.ie/Public-Information/Making-a-Complaint-/

4) Contact your local TD with your experience or what you would like to see from Irish maternity services

5) Create a local consumer group with women using your local maternity unit – Birth Matters in Drogheda and Cavan are consumer groups made up of women like YOU who work with their local maternity unit to better services for women, babies, and families. Why not start your own group?

For further information or for AIMS Ireland Support Services Please contact us at support@aimsireland.com

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