Tuesday, January 26, 2016

Child Life with Children of Ill Adult Patients

Child Life in Adult Palliative Care: 
Working with children of Ill Adult Patients 

Lately, we have really been discussing the competitiveness of the field of child life and the struggle to land a job. As our field grows, child life specialists begin to branch out into beyond the traditional children's hospital. 

Have you ever thought how child life specialists could benefit the children of ill adult patients? Think about it. 


"Twenty-five percent of oncology patients have under-age children at home." 

"Patients are often uncertain how to discuss their illness with their children, not knowing what words to use, how to discuss treatment and side effects, or how to explain the possibility of death."

"Although [the staff] often have training in and experience with breaking bad news to adult patients, staff usually lack this training and experience in dealing with children." 

In the Journal of Palliative Medicine, Camilla Sutter, M.A., CCLS and Thomas Reid, M.D. wrote an article in 2012 discussing a pilot program for child life consultation service for children of adults with serious illness.  
Click here to see the full article.

Abstract
Background: Families with young children often struggle to talk about and cope with a parent’s life-threatening illness and potential death. Adult interdisciplinary palliative medicine teams often feel unprepared to facilitate the open communication with these children that has been shown to reduce anxiety, depression, and other behavioral problems. In pediatric settings, child life specialists routinely provide this support to hospitalized children as well as their siblings and parents. Although these services are the standard of care in pediatrics, no research reports their use in the care of children of adults with serious illness.
Objective: Our aim is to describe a pilot child life consultation service for the children of seriously ill adult inpatients.
Design: We summarize the support needs of these children, their families, and the medical staff caring for them and report our experience with developing a child life consultation service to meet these needs. Setting/Subjects: Our service assists seriously ill adult inpatients and their families in a university medical center. Results: Informal feedback from families and staff was uniformly positive. During consultations, family and child coping mechanisms were assessed and supported. Interventions were chosen to enhance the children’s processing and self-expression and to facilitate family communication.

Conclusion: All hospitals should consider providing broad-based in-service training enabling their staff to improve the support they offer to the children of seriously ill parents. Medical centers with access to child life services should consider developing a child life consultation service to further enhance this support. More research is needed to evaluate both the short- and long-term clinical impact of these interventions.

Sydney says...

At my previous children's hospital it was within an adult hospital, and I was often consulted to our adult ICU or rehab unit. They are working on branching into Oncology but for right now the social worker handles that area. Generally, I was only consulted for deaths, near death events, or if a child wishes to visit their parent or grandparent. The adult ICU is so different from the bright colors and cheerful smiles in our PICU. It is important that children who come to visit are prepared for what they will see not only in their parent's rooms but also along the walk to get there. Our nursing staff always say how grateful they are that we can come and talk with these children, as they don't know what to say or how to say it. 

One time, the grandmother of a child with a parent that was dying told me the child was having a really hard time sleeping at night. I immediately explained to grandma that this was a normal response. However, after working with this child he eventually told me that a nurse told him that his father would be taking a very long nap and wouldn't be able to wake up... and now he was afraid to go to sleep. After validating his fear, I had to correct all of his misconceptions and make sure to use concrete and developmentally appropriate words. After that incident we put together a little in-service of developmentally appropriate words and ideas to use with the kids.

Another important use of child life in adult world is memory making. (See our post about all of these wonderful ideas.) Hand prints, hand molds, model magic thumbprints, filling a box up with memories and decorating it, etc. These children would not have any of these treasured items without child life. One family had children who were out of the country. Their mother was in a car accident and was going to die before they would even arrive back home. It was critical to help this family with memory making and other ways to say goodbye. I helped the father set up a Skype session with the girls to see their mom one last time, as well as made a set hand prints for each of them.  


Does your hospital have services to children of adult patients? Have you ever worked with Hospice? Several child life specialists have become employed with hospices or other palliative care organizations. Are you one of them? We'd love to hear your stories! 


-Caroline&Sydney

1 comments:

Jessica Menke said...

I am a Child Life Specialist who works in a children's hospital inside an adult hospital as well. I am often called to the Adult ICU and currently in the midst of putting together a proposal to pilot Child Life down in the Adult ICU. I think it is so critical to have someone there who can speak to these particular non-patient children's needs. Thank you so much for this. I am now adding this article into my proposal! :)