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Drexel Alumni Caring for Caregivers 

February 15, 2016

Altered book making group started by Drexel Alumni provides an outlet for caregivers of children with serious illness


Working in The Children’s Hospital of Philadelphia, it’s common to see a tremendous support system of doctors, caregivers and parents rally around a child with a serious illness – it is to be expected. But who is caring for the caregivers who rarely get to step away from their child’s bedside and their own distress? Using therapeutic interventions through altered book making, two art therapists at CHOP and alumni of the Department of Creative Arts Therapies, Abbien Crowley Ciucci (‘06), MA, ATR-BC, ATCS, LPC and Hope Heffner (‘11), MA, ATR-BC, LPC established a group, a safe space and an outlet riddled with metaphor to help them heal.


The group, which is fittingly called “The Next Chapter,” meets bi-monthly for one-hour-long sessions to offer support to family and friends through an art technique that involves using an existing book as an expressive tool for dealing with the emotions and stresses of caring for a sick child.  Initially conceived as a resource for parents of relapsed pediatric patients, the group evolved to include all caregivers on the oncology and bone marrow transplant unit. “We recognized quickly that this art therapy group could be beneficial for all families, so we didn’t want to limit participation,” said Ciucci.


“It gives us an opportunity to connect with the adults in that setting for once, is not about diagnostics or medical jargon, but really talking to another adult in a socially-focused atmosphere,” said Heffner, who also admitted, “It may seem silly or like something that can be done by anyone with art materials, but there’s a very specific therapeutic intent to what we’re providing; we are conscientious of material choices and call upon our therapeutic training in art therapy to support the parents.”

Not surprisingly, the decision to use altered book making was also a very intentional one. It gives caregivers an opportunity to be expressive indirectly through metaphor, but the book itself serves as a metaphor for some simple comforts that might be absent in the present situation like, for example, safety and control in the opening and closing of the book. According to Ciucci, the idea of metaphor is a common theme in art making, especially art therapy. She said, “Those who participate often have the opportunity to explore really intense subject matter, which might be difficult to disclose or describe verbally, through imagery.”


Heffner elaborated, “Getting any kind of medical diagnosis is a disruption to the story that they had for themselves or for their child. Being faced with a life threatening illness calls into question everything that you dreamed for your child and your whole life story gets rewritten. So the metaphor is how this is your chance to rewrite your own story, reorganize it and find more meaning in it through the art process. It’s an opportunity to reframe this awful experience that seemingly never ends as a chapter in life, and that there is a beginning and end to it, however long it may be.”


The meetings operate in an open-ended format to give the caregivers the basis and opportunity to guide their time. “Hope and I have had a lot of discussions about how to facilitate this group and we chose to leave it more open ended. Caregivers decide what they need and want to get from the group recognizing that everyone is in a different place in this experience, both practically and emotionally,” said Ciucci. As members arrive, materials are readily available – books, paint, pencils – and Heffner and Ciucci are on hand to facilitate any conversations that might arise and call for therapeutic recognition and processing.


In addition to being effective for members with different needs and catering to a group whose participants and dynamics vary from meeting to meeting, altered book making is a portable technique. The caregivers bring their book of choice to and from the group and work on it continuously over time, whether in the waiting room, their patient’s room or wherever they might be needing a dose of art making.

“We’ve gotten generally positive feedback,” said Heffner. “Adults feel like this is the one space where they can focus on themselves and what they need to do for themselves. It’s so unique and digs into their creativity, which helps them step away from the worries of the hospital, the bedside and lets them make something personal but meaningful for themselves as they walk this journey with their child.”