Sharing Sensitive News Denyse Deslauriers BA, MA (Candidate) Early Childhood Consultant Ottawa Children’s Treatment Centre February 25, 2011

Agenda Introductions Relationships Definition of “sensitive news” Why sharing news is difficult for parents and ECEs How you tell makes a difference Strategies for sharing news Wrap up and questions Show of hands – how many of you work in an Early Years Centre How many work in daycares? How about preschools? Any one working in the schools? Others that I have missed? Relationships – the context for the information on sharing sensitive news How to tell – planning ahead of time Strategies – what you can do when you are telling the news

Relationships Mutual trust Dialogue Respect We are social beings and therefore most of what we do and learn is done within the context of a relationship. Relationships can be short term, goal focused and point driven – a one off meeting with someone or a relationship that is context related – like my being here today with you Or they can be long term and more social focused – friends, family, pets, etc…. What connects them all is that relationships are based on mutual trust, dialogue and respect. Without these qualities, you are not in a good relationship and one that will benefit anyone.

“The success of all types of interventions will rest on the quality of the relationships between professional providers and family members.” (Kalmanson & Seligman, 1992, p. 46) I like this quote: The success of all types of interventions will rest on the quality of the relationships between professional providers and family members. Interventions are what we all do everyday when we interact with a child or a family. We are always modelling new skills for others and the success of what we are trying to instill in others is marked by the quality of the relationship – that respect, trust, and dialogue piece.

What does a quality relationship look like? Collaboration with families/Working together Being sensitive and responsive to families’ needs/concerns Self- awareness Being true partner with clients – collaborative relationships are PARTICIPATORY! – families have choices and are actively involved in decision making – built on empowerment – focus on strengths, resources and capabilities, sharing information and expanding possibilities for the future, and communicating a hopeful attitude that goals will be achieved (Kasahars & Turnbull, 2005; Luborsky, 1993) Families want to feel supported – want you to be empathetic and trustworthy, want to be able to share their concenrs, goals, celebrations – NON JUDGEMENTAL ACCEPTANCE is key – need to be aware of families concenrs, expectations, priorities, resources, and worldviews – ask questions!!! Need to recognize, understand, and regulate one’s own feelings to work with others We all Need to take time to reflect independently or with peers on how things go and where we can improve in our interactions with others throughout the day. And this leads into the next part of my presentation because Part of a quality, collaborative relationship is being able to share sensitive news with families in a way that is supportive and effective.

What is “sensitive” news? Any information that causes a negative change to a person’s expectations for their present and future (J. Olds, 2008) Janet Olds, a Psychologist, presented at OCTC a few years ago and she defined sensitive or difficult news as being: Any information that causes a negative change to a person’s expectations for their present and future. Show of hands: How many of you have been on the receiving end of some sensitive news that you feel was shared in a positive, successful way? How many can remember a time when you received news that was shared poorly? Do you remember exactly what was said? Do you remember where you were, what time it was, what else was happening? I want to share a short video clip with you…It’s about 2 minutes long… I am sure this wasn’t how news was shared with any of us but it does illustrate how no one wants to receive difficult news and that there are some ways that are better than others to deliver sensitive news!

Difficult for families Causes pain, hurt, distress Raises emotions Can cause a negative reaction Sensitive news is difficult for everyone to give and it is difficult to receive, no matter how it is done. Later we’ll look at strategies to help with sharing news but why is it so difficult for families to receive news? Receiving sensitive news about our children often causes pain, hurt, and distress. it can be the death of our hopes and dreams. Or it is asking us to change the way we have been doing something to do it differently. When we are given sensitive news as parents, We are being asked to create a new reality. Receiving sensitive news arouses emotional responses and instills a feeling of a lack of control. No one likes to feel like they are not in control around others. As a result of this pain and hurt, parents may react negatively. Parents may react with a violent outburst or by needing to place blame somewhere. Or they may internalize the blame and say it’s their fault.

Difficult for Professionals Fear of being blamed Lack of confidence in skill set Fear of emotions Sharing news is also very difficult for professionals. No one I know says it is easy, even after 25 years in their field. If it is easy, we are probably not doing a very good job of it. Some of the reasons it is difficult for professionals is the same as for parents – fear of being blamed, fear of emotions – our own and others, and also a lack of confidence in our ability to deliver the news in a supportive way. Did we make a mistake the last time we shared sensitive news that is scaring us from doing it again? With regard to the fear of emotions, it is important to remember that No one wants to be on the receiving end of anger but we can’t not share what we know for fear of the other person’s response. We must remember we don’t own and cannot control others’ emotions and responses, we can only control our own. Fear of our own emotions and the emotions of the recipients Rather than striving to be professional by not showing any feelings/emotions, we should be empathetic and show that understand the feelings others have

Ethics As professionals, it is our ethical responsibility to have the difficult discussion with the parent You are the best person to have the discussion because you know the child and the parent As professionals, it is our ethical responsibility, within our relationship with the child and family, to have these difficult discussions. We need to be willing to share what we know and help others to advocate effectively for their child by giving them the tools they need to do so. It is not fair to families to stay quiet and avoid the discussion or delegate to someone else who does not know them. Remember the importance of the relationship in everything you do with families. Story about a client I worked with. I did home visits with a little boy who was almost 3 years old. His parents suspected something was going on developmentally and had taken him for private speech and language therapy. He had been seen by a developmental pediatrician who was takign a wait and see approach. Over six months I visited every two weeks and saw many flags that supported the need for further assessment, but I didn’t feel it was my place to bring it up with the family since he was going to be reassessed in 6 – 9 months anyway. Instead, I did my home visits, worked on what I could, and supported them in finding a good preschool program for him while they waited to see the developmental pediatrician again. A couple of years after I had discharged this client, our paths crossed in the community at an autism support meeting. He had received a diagnosis of autism. His mother was very angry, at me as well as other professionals who had worked with him when he was younger, because it was clear to her now that we had known all along but for some reason had not shared with her what we were suspecting. This was a turning point for me where I vowed to myself that I would never again choose to remain quiet if I saw flags that warranted further discussion. While it is not my place to suggest a diagnosis of any kind, it is my place and yours, to raise educate parents about red flags that you are seeing, and support them to make the right decision for them as to the next step. It may indeed be a wait and see approach that they choose to take, or they may go home and do their own research and accept or deny what you have shared, or they may want help to pursue a full assessment. Each parent will be in a different place when you have these discussions and it is important to recognize that and work from that same place towards the common goal of doing the best for the child.

4 letters to remember when sharing news with parents Adapted from The Hanen Centre, A Module for Learning Language and Loving It, 2009 Take a couple of minutes and reflect on a time when you have had sensitive news shared with you. With one or two people sitting near you, think about this and using the letters T, E, and L, come up with a few words that describe what the other person did to make sure that this news was shared in a positive way. Timing, tact, training, trust, turn taking, thoughtful, teach, tone, treat with respect Empathy, environment, empower, emotional impact, eye contact, encourage, exact information, explain, examples, explicit, ESL, educate Listen, look ahead, lovingly, language, low key, look interested Language – words you choose to use, body language, learning, location, logic, lifestyle

How You Tell Makes A Difference Plan Ahead Rapport Setting Message Person’s Reaction “People remember vividly the way in which news was given to them, and they may go over it repeatedly for the rest of their lives…” (Loss, Bereavement and Grief, Ashurst and Hall, 1979, p. 131).

Rapport Setting Message Reaction Establish mutual trust Emphasize positives as well as negatives Give specific examples Ensure consistent message among all providers involved Setting Plan a mutually convenient time Allow sufficient time for discussion Ensure location is private and respectful Eliminate distractions Message Be aware of purpose/goal of discussion and share that with family Have supporting documentation available, i.e. screen/checklist Reaction Consider how parents may react ahead of time and how you will respond Consider cultural differences, family stresses, parent’s values and priorities, and acceptance of any problem Pay attention to establishing a rapport – building a level of trust to have the conversation through establishing a common purpose Consider how to adapt the setting to ensure privacy and lack of interruption during the discussion. Some say it’s nice if there is a window where the news is being shared to eliminate the feeling of being isolated, ensure you are seated and at the same level as the recipient to eliminate a power imbalance Think about the message you want to share. What is the important nugget of information that the recipient needs to hear? People overload and shut down very quickly when being given sensitive news. It is important to deliver the key message in a clear manner at a speed at which it can be absorbed. Prepare ahead of time for what you think the possible reaction may be so that you are not surprised by it. Anticipate how it could go. Remember to stay calm and in control of your own responses regardless of the reaction. Have kleenex available for the recipient if they need it. Be aware that what you think it terrible news may not be under some circumstances. Consider what the recipient may have indicated to you in the past, where their knowledge is at, what their questions have been. They may be very prepared for this news and it may actually be a relief. No emotional response does not mean that the recipient doesn’t understand the news or is not upset. Everyone is unique in how they will respond.

Journey Of Acceptance: Stages of Coping Denial -Support & give information Resistance – Support & be there when things “crash” Affirmation – Provide appropriate information & resources Integration/Acceptance – Reinforce confidence in ability to manage

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Sharing Sensitive news- An example Find the Bloopers Teacher : Mr. Mrs …just before you go out, I want to talk to you for a moment. Parent: I really need to get to work. Can we talk at another time? Teacher: Well , this will just take a moment. I was wondering how you feel Vanessa is adjusting to child care? Parent: I think she is doing fine. Why are you asking? Teacher: Well I am glad you’re feeling Vanessa has settled in OK. I agree with you that she certainly does seem pretty happy here. We do have some concerns.

Parent: Concerns? What do you mean exactly? Teacher: Well we think Vanessa has a speech problem and you really should have her assessed. Parent: A speech problem. What do you mean? Teacher: She isn’t talking like the other little children. This is a big problem for us because we can’t just understand what she wants when she whines and cries. It may be because you give in to this behavior at home. Parent: Whines and cries? I thought you said she was happy here. She has been here for two months now and I thought everything was fine. Teacher: Well, Vanessa is doing OK in some areas but we have been concerned for quite a while about her speech. We wanted to give her a chance to settle in before we spoke with you.

Parent: Well, I really don’t know why Vanessa is acting like you say Parent: Well, I really don’t know why Vanessa is acting like you say. At home, she is happy, and she actually uses quite a few words. Teacher: Well, we have not heard one word at school. Parent: Well, I am not making it up. (getting irritated) I thought her language was coming along pretty well. She has to have at least 30 words that she uses at home. Doesn’t she communicate with you here? Teacher: Well, she does not say words. We think there is a problem and you need to have her assessed. Parent: Assessed where? And what will the assessment tell us? Teacher: I don’t really know where. Ask your doctor. The assessment will tell us what the problem is. Parent: (with a frustrated ,angry tone creeping into her voice) But I don’t think there is a problem!

Reactions of parents & how you will respond Grief : Need to empathize and support without trying to take control –” It’s difficult to hear this news about someone whom you care so much about” Inadequacy, vulnerability, confusion: Need to empathize – “ I imagine hearing all this information could be overwhelming. I know it will take time to take this all in and decided what you want to do. There are many support systems in the community that are available when you are ready.

Anger: Need to empathize & redirect Anger: Need to empathize & redirect. Parents may be very angry when they hear your information, and blame you for not adequately solving their problems. Anger may be covering underlying fear- “I think it may be hard when someone tells you your child has a problem”. Guilt: Need to educate- “ There was nothing that you did to cause these communication difficulties”.

Stage of Acceptance (Can be cyclical) 1. Denial: Parents may be very surprised and deny that there is a problem. They may attribute Joshua’s lack of interaction to the fact that he is just independent like other members of the family. You will need to educate the parents & describe further how the child’s behavior is not the same as being independent and the impact of his behavior on his learning and development ( need to educate , not dispute)

Resistance: Parents accept the problem but feel they are going to be an exception. May be a secret wish to prove the professionals wrong. Need to support parents while they explore their options. Affirmation: Parents believe there is a problem & have confidence in their ability to deal with it. May become very involved in searching for information & linking up with different services. The problem may take over their lives , distracting them from other issues in their lives. Need to give parents time & space to work out these issues. Try to avoid power struggles.

Acceptance: Parents accept the problem & are able to place it into perspective with other issues in their lives. Feeling of “Life goes on”in the presence of this problem.- “It sounds like you are ready to move ahead to discuss some options for how best we can help Joshua”

Reflection How did you start? How did you introduce the sensitive information? How did your recipient react? How did you respond? How did you continue to share the information? How did you conclude?

Sharing the News Strategies Observe, Wait, and Listen Follow the Parent’s Lead Get the parent’s perspective and respond Take Turns Adjust Your Language Extend the Topic Strive for agreement Explore possible solutions Agree on next steps Scan

Observe, Wait and Listen Be comfortable and relaxed with sharing news Find out what parents know and want to know (collaborative) Watch for verbal and nonverbal cues Deliver a warning shot Adapted from The Hanen Centre, A Module for Learning Language and Loving It, 2009

Follow the parent’s lead Build on what the parent says Be caring and supportive – no blame Use active listening – respond to words and feelings

Take turns Start by establishing common interest/purpose Pause for parent’s perspective, reaction and questions Be curious Agree on problem and priorities before jumping to solution Brainstorm various options together Emphasize “we”, not “I” or “you” Leave final decision with parent Focus on informing, not disputing Remember: “First seek to understand, then to be understood” – Steven Covey, 7 Habits of Highly Effective People

Adjust the way you talk Keep your opening statement brief Give a little information at a time Be clear, specific, and understandable Do not use jargon Provide visual and/or written material if available and appropriate

Extend the topic Inform Explain Talk about future Clarify the issue Share your observations Explain E.g. reasons for your concern and child’s behaviour Talk about future Outline what happens next Arrange for resources and supports Set up follow up date

Scan Carefully observe reactions of all present for discussion Adapt your response to individual needs

What people value when receiving sensitive news Comfort, care and compassion Confident and knowledgeable explanations Opportunity to ask questions and have concerns addressed Follow up

It takes time… To absorb the information To incorporate the information into what was already known To sort through the emotions This is a process, a grieving process, with the same steps of shock, denial, anger, questioning/testing, and finally acceptance

Never assume Everything that was said was heard What was heard was understood What was understood has been integrated into other knowledge That the implications are clear and straightforward for the family It takes three to seven times of hearing something to accept it or understand it – the harder to accept, the more times you need to be exposed to the idea Hearing the words does not mean understanding the meaning We all come with knowledge but what we understand intellectually is not what we understand emotionally Hearing your child has red flags for a delay or disability doesn’t necessarily translate into how this will impact on the family’s day to day living Remember that taking in this information is a process and it is not linear but may often requires the receiver of the information to go back and ask again for clarification in order to fully comprehend the situation

In conclusion “…people may forget what you said, people may forget what you did, but people will never forget how you made them feel.” Maya Angelou

Thank you! Questions?