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Goal dissonance between CWS and Caregivers — 2 Comments

  1. Hello Matt,
    That’s a really good question! More often than not, there are large differences in the way caregivers and PWS (children as well as adolescents and adults) perceive stuttering and everything related to it… And so obviously their goals / expectations differ.

    At our institute we have been using the Impact Scale for Assessment of Cluttering and Stuttering (ISACS) since 2017. This 100 item tool that quantifies impact of stuttering and/ or cluttering from the perspective of the PWS as well as that of their significant other. Two identical forms of the scale are filled out by the adolescent/ adult who stutters and the caregiver. Discrepancies become apparent through the scores, as well as from responses to individual statements. These can then be addressed by comparing the two forms and discussion on why the discrepancies exist. This really helps PWS / caregivers set realistic expectations from therapy, and set common, achievable goals.

    For children, the discrepancies in goals/ expectations of CWS and their caregivers can be addressed through some simple fun activities.
    For instance, the child and the parent could be given fruit cut outs in two different colours to be pinned on a picture of a tree. Each of them writes things they want to achieve through therapy (without consulting each other) and pins them on the tree. If there’s a “match”, the two matching fruits get replaced by golden fruits. The “unmatching” ones are then discussed, and gradually modified to make more fruits turn to golden ones! This enables them to first detect discrepancies and then address them, and modify goals wherever required.
    Does that answer your question? Wish you the very best!

    Pallavi

  2. Hi Matt,

    I find that sometimes goal dissonance between children and caregivers occurs when there are underlying expectations that are misguided or ill-informed (e.g., caregivers who may still be striving for a “cure”). I believe that open communication is the best place to begin, listening to their thoughts and concerns, and validating them while at the same time gently debunking any myths they may be holding to.

    I also try to connect parents with other parents of children who stutter, especially in the context of a support group or a conference, because then they are able to hear they’re not alone in their worries and fears while at the same time hearing solid “advice” or wisdom from parents who are maybe farther along in their journey of acceptance. Hope this helps!

    Ana Paula