Discussion themes:

Hope:

Important to not take away parent’s hope.  Present your view of the child’s prognosis in a realistic way without being too negative.

Barack Obama quote: Hope is not blind optimism.  It’s not ignoring the enormity of the task ahead or the roadblocks that stand in our path.  It’s not sitting on the sidelines or shirking from a fight.  Hope is that thing inside us that insists, despite all the evidence to the contrary, that something better awaits us if we have the courage to reach for it, work for it, and fight for it.

Parents stated in the article, “you have to have some sort of goal or dream to work towards.” (p. 587)  “They didn’t deny the diagnosis; they denied and defied the verdict that was supposed to go with it.” (p. 587)

Looking for hope will happen through others if not given from you (parents will look for hope on the internet, through alternative medicine, trips to the USA).  It's okay to say, " I don't know. I don't have a crystal ball"

In regards to sorrow, some families seem to take comments on potential poor prognosis, like "this child will not walk if they are not walking by age of 7, as encouragement to try everything possible to walk.  In some cases parents seem to miss their childhood.

With giving prognosis, we discussed that it is a balancing act between giving the truth and giving hope.  We acknowledged how powerful our words of hope can be, for example saying that the child would walk. That this has really been positive for families when it is true, but a dangerous path in case it does not happen.

Family coping:

Quality of life may be high even though the burden of care is high.  Don’t make judgements.  The article states, “Parents were clear that their experience was strengthening.” (p. 588)

Families can be at different stages on the joy / sorrow spectrum at different times in their lives.

Different cultures have different perspectives on disability and this will affect family coping.

It is often difficult not to label families as "maladaptive"  in certain situations when they seem not to be understanding however it is necessary to provide family centered care. 

What we can do:

Strength-based service model fosters hope accentuating the positives.

ICF model is also based on strengths.

Looking at society, we could see how professionals also feel sorrow and sadness for children who have a disability.  Healthcare providers could fall in the same conceptual model of joy, sorrow and the tension in between.  Important to be aware of this.