The effect of continuing periodic workshops and

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The effect of continuing periodic workshops and spending time with siblings of children with life-threatening illnesses Kazuteru Niinomi, RN, PhD1, Miwa Sasaki, CLS2, Natsumi Makita, CLS2, Saori Hagiwara, CLS2, Tarou Kaneko, RN2, Hiromi Noda, RN2, Midori Asano, RN3, PhD, Miho Narama, RN, PhD3, Yoshiyuki Takahashi, MD, PhD3 1 Osaka University Graduate School of Medicine, 2Nagoya University Hospital, 3Nagoya University Graduate School of Medicine

Outcomes

Introduction l The Nagoya University Hospital is a national-designated hospital for pediatric cancer in Japan. l Therefore, patients are widely admitted to the hospital from inside and outside the prefecture. l Many parents stay with the inpatients, and the siblings are oftentimes forced to live apart, thus facing psychosocial issues. l Based on these reasons, from 2010 we started holding workshops with siblings of children with life-threatening illnesses.

Purpose l The purpose of this poster is to report the workshops on spending time with siblings and retrospectively analyzing the effect of continuing periodic workshops over half a decade.

Methods l The workshops were held twice a year with the following objectives: (1) allow siblings to play a leading role in the hospital, (2) convey them the message “you are important,” (3) meet other siblings in the same situation to feel the presence of peers, and (4) give them accurate information about the wards where siblings cannot enter. l The workshop activities included cooking (e.g., Takoyaki – Japanese octopus balls or house of candy), Playing Name BINGO＊ designed to direct attention to siblings, quiz games about wards, and experience of using the medical equipment (try using, equipment such as stethoscopes, sphygmomanometers, and pulse oximeters). l A hospital tour was recently added [ e.g., going to clinical simulation center, radiation units (e.g., X-ray or CT rooms), rehabilitation center, patient library or the restaurant on the top floor]. l Finally, video messages from staff members for siblings were presented and the ceremony awarding certificates for participation was held. ＊BINGO was designed to direct attention to siblings such that siblings’ name were used instead of numbers; when the name was called out, the facilitating staff member asked them relevant questions to allow them to share more about themselves, thus involving siblings at a deeper level.

l A total of 179 siblings participated until 2017. The number gradually increased from three siblings from two families in 2010 to 24 siblings from 17 families in 2017. l Similarly, the number of voluntary staff members participating increased from five to 27. l Initially, the participants were recruited only from the pediatric ward; however, we later gained cooperation from pediatric surgery, neurosurgery, orthopedic surgery wards, and Neonatal Intensive Care Units. l The number of staff members was expanded to include nurses and Child Life Specialists to students from nursing, nursery teachers, doctors, radiological technologists, and physical therapists. l The workshop earned good reputation and received positive responses from siblings and their families. l We received responses from the parents of the siblings who participated for a short while (e.g., “Until we joined the workshop, my daughter hated the hospital, but now she loves going there.”) l Some siblings who had participated in the initial workshops shared their responses with us several years later, (e.g., “I made some good memories by joining the workshops and learned about kindness from the staff members.” l As a result of the increased interest in sibling support among the staff members, we invited external experts and held seminars to strengthen staff members' ability to understand the siblings. l Discussions between staff members and parents about siblings increased in daily life. l We also got the doctors to answer all questions and provide information to siblings who wanted to know what was happening to their brother or sister. l Recently, we have started investigative research targeting the siblings. l We are also planning to start siblings’ learning programs about pediatric hematology/oncology. l After participating in our workshop, other hospitals’ staffs also started similar workshops in their hospitals. l People who had experienced the role of siblings to those with life-threatening illness over a decade ago, when the program had not started, reported their positive thoughts to us about the program focusing on siblings.

Logo of workshop with Sibs. in Nagoya University hospital

Making a house of candies

Making Takoyaki

Playing Name BINGO designed to direct attention to siblings

Video messages from staff members for siblings

Stamp board of hospital tour

“We love siblings” logo

30 25 Ceremony of awarding participation certificate

20

Staff members with siblings logo t-shirt

Hospital tour

Radiation units (a CT room)

Conclusions

15 10 5 0

1st

2nd

3rd

4th

5th

Number of Siblings Quiz time wards

Clinical simulation center

Wheelchair experience

Try to using stethoscope

6th

7th

8th

9th

Number of Families

10th

11th

12th

13th

14th

15th

l Although evaluating the effect of a workshop is statistically difficult, the effects were suggested, which could be evaluated from different viewpoints. l We could approach the siblings’ experiences effectively even in a hospital setting. l Although the workshop was only held twice a year, encounters between siblings and staff would lead to the development of subsequent relationships. l By starting small with peers, we can gradually expand to various other fields.

Number of Staff Members

Figure 1. Trends in the number of participants in the workshops

This work was supported by JSPS KAKENHI (JP16K12142).