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Tips for Improving the Well-being of Siblings of Individuals with Prader-Willi Syndrome: Debriefing

Siblings of individuals with Prader-Willi syndrome (PWS) are often exposed to tantrums, psychiatric distress, health crises, and the extreme rigidity of their siblings. For some, this creates a traumatic and stressful home environment. Offsetting this exposure with positive experiences and therapies often helps siblings get through these challenges. Siblings of individuals with disabilities are at risk for developing anxiety, depression, and even post-traumatic stress disorder (PTSD).1

Parents caring for a child with disabilities may also be raising other children with hidden emotional and mental health concerns. The well-being of healthy siblings is often overlooked because parents, medical providers, and behavioral health providers tend to focus on caring for the child with the disability. However, siblings of individuals with developmental disabilities like PWS have an increased risk of developing behavioral and emotional problems and therefore, need attention and interventions to help them be resilient and live successfully with a sibling with PWS.2

In a recent study, 20% of parents reported that their healthy sibling, closest in age to the child with PWS, had moderate to severe psychological distress.  When the siblings themselves were surveyed, a full 59% showed clinically significant symptoms of PTSD.

What is Debriefing?

After a meltdown or other traumatic or stressful event, it is beneficial to sit down together as a family, without the child with PWS, and talk about what has just happened. Allowing everyone to express their thoughts and feelings, no matter what they are, can build connection, defuse intense emotion, and set the stage for family problem solving.

Why Debriefing is Important?

  • Family cohesion increases when everyone is on the same page, especially during stressful events or outbursts.3
    • A specific plan for these events can reduce the contention between family members and empower those trying to handle the situation.
    • These debriefing sessions are a great way to express and understand emotions for each member of the family. It allows siblings to feel seen and heard
  • A discussion allows siblings to feel they are a part of the solution.
  • Siblings and parents can learn from each other if there is an open and honest environment. Sharing perspectives will benefit everyone.

Some Ideas:

  • The debriefing meeting can be structured with specific questions you systematically review or an informal discussion. Choose whatever style meets the needs of your family.
  • Timing of the debriefing might work better after the child with PWS has gone to sleep. Maybe as part of the debriefing, unlock the pantry and share a treat together.
  • Go around to each member and ask how they are feeling now and how they felt during the meltdown/event (make sure parents share as well).4
  • Try to laugh about what happened. Humor is a great coping mechanism to help move forward. Your child with Prader-Willi syndrome can be hilarious. As one interviewed sibling said, “The hard times are funny after the fact.”
  • Discuss what you could have done differently during the event to make it less negative on the family. Have a specific plan for different types of events. For example, give specific instructions on what a sibling is expected to do during a meltdown (e.g., go to your room, lock your door, put in your headphones and listen to music; walk across the street to your friend’s house; go get in the car).
  • Discuss what everyone did well and what worked.
  • Let the discussion flow and go wherever it goes.
  • Try not to judge or invalidate anything said even if it is hurtful or hard to hear. It is okay if your child does not like their sibling with PWS sometimes, or they do not agree with how a parent handled the situation. Siblings need to be able to express their honest feelings and gain support from the most important adults in their lives.4
  • Seek help from a professional when distress is persistent or affects the well-being of family members.

Children who grow up with a sibling with PWS are often inventive, resilient, and compassionate.  However, witnessing someone you love be out of control or in danger is painful. Even the strongest of people can feel overwhelmed. Addressing these challenges openly allows all members of the family to get the care and support they need.

References

(1) Lauderdale-Littin, S., & Blacher, J. (2016). Young adults with severe intellectual disability: Culture, parent, and sibling impact. Journal of Intellectual & Developmental Disability, 42(3), 230–239. doi: 10.3109/13668250.2016.1230843

 

Contributed by Jane Thornton and Emma Thornton

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2 Comments

  1. Stephen McDonaldJuly 14, 2020

    I’m wondering if you have looked at the continuing stresses on adult siblings of PWS adults after parents have passed away and the responsibility for supporting the PWS adult falls to the siblings.

    Reply
    1. PWSA | USAJuly 15, 2020

      Hi Stephen,

      This is a great question.This study only looked at siblings aged 5-18 and their experience, so we did not look at stressors for adult sibling caregivers. We did examine the toll of the expectation that siblings will take care of their sibling with PWS after the death of their parents.

      This is what we found: Many healthy siblings are tasked with, volunteer or are pressured into the responsibility of taking care of the sibling with PWS after their parents die. This onus often weighs on these individuals throughout their life, causing even more stress, fear, and burden. Contention and resentment can arise in these families because of this care taking responsibility.

      To my knowledge, no study has been done on adult caregiving to a sibling with PWS. However, there have been many for adult caregiving for siblings with disabilities.

      This is a link to one such study:
      https://www.disabilityscoop.com/2012/12/05/sibling-caregivers-struggle/16899/#:~:text=The%20national%20poll%20released%20Wednesday,that%20role%20in%20the%20future.

      Reply

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