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“Breaking the Bad News� Guidelines for working with families with children with disabilities

Pre-conference Workshop 2nd BPA International Conference December 2013


A parent is sent to you for a diagnostic concern ‌.


The Initial Consultation‌ Clinician: What brings you here? Parent: My child cannot sit in one place. What do you think is my child’s problem? Clinician:YOUR RESPONSE


The Initial Consultation‌ Clinician: What brings you here? Parent: My child refuses to go to school and do his schoolwork. What do you think is my child’s problem? Clinician: YOUR RESPONSE


The Initial Consultation‌ Clinician: What brings you here? Parent: My child refuses to go to school and do his schoolwork. What do you think is my child’s problem? Clinician: YOUR RESPONSE


What do you think is wrong with my child?


Initial Consult: Clinical Case Study HN, is a 7-year-old boy facing difficulties in coping with the academic curriculum. Difficulties are reported in Spoken English Language, word reading, reading comprehension, spelling, written language, handwriting, math and curricular subjects. Letter reversals ('b' for 'd'), difficulty copying from blackboard and incomplete work are also reported. He also exhibits emotional and behavioural difficulties (irritability and oppositional defiance).


Prepare yourself for… 

Information gathering

Addressing concerns/Reassurance ◦ No false reassurance ◦ No diagnostic indicators prior to assessment

Explaining the assessment process/procedures


Have you seen other children like my child?


Prepare yourself for… Addressing concerns/Reassurance ◦ No false reassurance ◦ Prevalence rates of various presentations ◦ Discussing the uniqueness of each child ◦ Normalize ◦ Validate


DURING THE ASSESSMENT….


Common Situations 

Do I prepare my child for the tests?

Is there a pass/fail?

Can I sit and watch?

But the child does these at home with me!

Will my child be comfortable?

What does the psychologist know about my child?


Common Situations…contd. 

Who is the counselor? Is the person qualified?

Experience with such children before?

Will you be doing the assessment? Why not?

How will you know how my child is doing if you are not doing the assessment?

Will I be assessed too? My English is poor.


Delivering the hard news: Challenges of the early Career Psychologist


Anxiety about being the bearer of “THE LABEL” 

Visiting self-doubts- training, exposure, data that we have

Reasonable doubts regarding diagnostic labels- how sure can we be? Static? Dynamic diagnosis?

Necessary pause before the diagnosis=== IT IS OKAY TO PAUSE


Alleviating Diagnostic Anxiety: Suggested steps 

Know your stuff! ◦ the Manifestations/ Diagnostic criteria

Collateral Informants

Approach diagnosis with an “inclusive frame of mind” ◦ Ah! The possibilities! ◦ Narrow down diagnosis through the process of rule out- aka Differential diagnosis. ◦ Why this and not that?


Alleviating Diagnostic Anxiety: Suggested steps 

Differentiate within diagnoses- what is the greater problem? –

Primary Diagnosis

Secondary Diagnosis

Tertiary Diagnosis

Exacerbating/Alleviating factors

Not getting attached to the hypothesis

Ego management


At Drishti : QES 

Assessment- 1st report- One psychologist

MP- QES- goes through-verification, interpretation

SD- Final diagnosis

Double-check system


PREPARE TO DELIVER THIS HARD NEWS


Prepare to Deliver the Hard News 

Finding the time and place •

Include both parents if possible

Come prepared

Mentally (Meta-message checklist)

Review- Report and recommendations

Suggested Resources

Include a colleague


Delivering the Hard News: Meta-Message Checklist 

I respect your right to hear this news in private, not in a large impersonal meeting, and to express however you feel about this openly with me.



I care about your child - this is hard for me to say and, I know, hard for you to hear.


Delivering the Hard News: Meta-Message Checklist 

I know the delightful human being your child is, and can give you examples from my experience.

I know the limits of prediction and will neither over nor under-play what I know.

I respect your right for a “second opinion” and will not alter my compassionate stance because you ask for one.


Delivering the Hard News: Meta-Message Checklist I will make the news comprehensible to you and your family, with concrete examples of why I believe the diagnosis is correct, and I will not bury the news in jargon or euphemisms or metaphors to pretend the significance is less than it really is.


Delivering the Hard News: Meta-Message Checklist I will make myself aware of cultural, ethnic, racial and social and economic differences between myself and your family and will seek to communicate in was that bridge those differences with sensitivity and compassion.


Delivering the Hard News: Meta-Message Checklist ď‚—

I honor your right to be overwhelmed by this message, and to express grief, anger, denial and even despair without being overwhelmed myself by your feelings.

ď‚—

I can handle your reaction and will not break my compassionate stance no matter how you respond.


Delivering the Hard News: Meta-Message Checklist ď‚—

I know you may have questions, and I have time or will make time, to answer them non-defensively.

ď‚—

I know you exist in a context and I am available, if you ask me to help you problem solve how, or if, you tell others in your life about this.


Delivering the Hard News: Meta-Message Checklist ď‚—

Your child can learn, make you proud of accomplishments and bring you happiness.

ď‚—

Your child can be a great teacher for you and all who meet you and your child.


Delivering the Hard News: Meta-Message Checklist ď‚—

This is the same child before this news as well as after this news and I promise to remind us of this fact before the session is over.

ď‚—

We can work together, hand in hand, to help your child achieve maximum independence and quality of life.


Also Remember… 

NOT in a large meeting

NOT time to discuss goals and objectives

NOT time to determine placement


Your Paralanguage 

To speak at a pace that is comfortable, allows parents time to process what is being said. In other words, don't speak fast, or convey your need to “hurry up.”

Watch your body language: Lean forward, sit side-by side or within touch if sitting at a table. If appropriate, touch the parent gently on the shoulder or hand at least once during the session

 

Use the parents' and child's names throughout the session Try to get both parents at the conference


At the time of feedback sessions‌

Frequently asked questions


My child Was not comfortable during the assessment.This may have affected the Results


What this Parent Needs‌ 

Addressing their emotional reaction to the diagnostic process, both during the assessment as well as during the feedback session

ď‚—

If they feel validated they will be more receptive to the information you are giving during the diagnostic process.


ARE You sure my child has This? He/she can do XYZ at home! So good with computers!


What this Parent Needs… 

The certainty of the diagnosis was central for parents' experiences and the meaning they ascribed to the stating of the diagnosis

Important to acknowledge that the child has various capabilities despite his/her disabilities.

Important to individualize feedback with specific information gathered throughout the assessment process, so parents realize that the evaluation is not a cookie-cutter report


WILL my child be cured?


What this parent needs… 

Possibilities for taking action

Address their concerns about the uncertainties they may feel about the future

Realistic expectations from the parent, child, others involved

Important for parents to hear that their child will continue to learn and acquire more skills. Point out the qualities their child has that support participation in home and community life, e.g., being responsible, working carefully.


How do I explain the diagnosis to my child/family/school?


What this parent needs… 

Model clear and straightforward information about the diagnosis, prognosis and intervention during the feedback session

Encourage clear and open communication with support networks

If taboo is a concern, validate these feelings. Offer counseling with target individuals to address this barrier


A clinician’s dilemma: case study


SC, 14-year-old boy: Writing Sample


How DOES A therapist support the family once the diagnosis is done?


Using Positive Psychology to Support the Child and Family after Diagnosis 

Initial Support as always to handle grief, disbelief, doubts, denial, anger

Visiting self doubts and reasonable doubts regarding diagnostic labels, and necessary pause before diagnosis.

Acknowledgement of powerful emotions seen during session and reported between sessions

“This is very hard to cope with but we can work on it together….”


Realities and Relationships 

What feels different after the diagnosis

Each one’s reality and perceptions addressed individually

Acknowledgement of everyone’s emotional experience – the child, parents, siblings, grand parents, extended family

Relationships within the family and dynamics


Assessing the Distress 

What are the unique and expected stressors for the family in concern?

Any conflicts of interest in family

What is controllable?

What is not?

Role of Acceptance and its place

Commitment and team approach

Assessing motivation and beliefs of each member


Positively Impacting the Environment 

Home, School, Family, Friends, Community

Expectations, beliefs

Threats to self esteem, Bullying….

Sibling relationships

Liasoning with school and extracurriculars

Opportunities for sibs to become ‘special siblings’

A Special Life


Integrating the Positive Psychology Focus 

Identifying the strengths of the child, siblings, parents, others

Defining happiness – for the individuals and for the family unit

Defining Sustainable Happiness for the family

Highlighting potential for opportunities for growth and meaning in daily living

Creativity and mindfulness as means


The Present Moment 

Modeling in the moment during sessions – emotions and management

Choosing role models and finding inspiration

What is possible and feasible

‘Flow’ is for every level of ability

Coping v/s Savoring

Educating others and Advocacy

Leading remarkable lives


Additional Points that could be discussed during the SC case discussion THIS point onwards slides printed for REFERENCE ONLY. Won’t be shown to the group


If parent is very resistant‌ 

Ask the parents, "What do you think is going on, what is it that you believe is happening?"


If parent gets very angry… 

Often the messenger of the bad news becomes the target of parents’ anger

Remember that the anger is not personal


If parent/s are very quiet/passive ď‚—

Encourage parents to ask questions.

ď‚—

Ask them whether the diagnosis is surprising to them, but do not argue with parents who disagree with the diagnosis.

ď‚—

Point out that regardless of the diagnosis given, the child they are taking home is the same one that they know and love.

Profile for Drishti

"Breaking the Bad News"- Guidelines for working with families with children with disabilities  

A pre-conference workshop conducted at the 2nd International Conference of the Bombay Psychological Association Facilitators: Smita A. Desai...

"Breaking the Bad News"- Guidelines for working with families with children with disabilities  

A pre-conference workshop conducted at the 2nd International Conference of the Bombay Psychological Association Facilitators: Smita A. Desai...

Profile for drishti
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