Current Status and Future Tasks on
Support for Siblings at the Bereaved Family Gathering
Nastumi Sugita* ・ Sachiko Mastui* ・ Ayaka Ogawa*１．Introduction
Many children pass away in a hospital due to severe illnesses including pediatric cancer,
cardiovascular diseases and neonatal diseases. Because of restrictions on visitation, siblings ofchildren who stay in hospital are not allowed to enter the pediatric ward until the terminal period.
Consequently, healthcare staff including HPS have few encounters with siblings throughout thetime. Though we were concerned about families after they lost their child and left hospital, we did
not have any opportunity to hold a grief work with them.
Since the need of grief work for families seemed increasing, doctors, nurses and clinicalpsychologists came to work together and held gathering evenings twice (once a year) for families wholost their child(ren). In this article, especially gatherings of siblings are mainly reported.
２．Overview of Support for Siblings
We held a family gathering for families that lost their child in our hospital. At the first gathering,
we had a group work, an information exchange session, and a concert. During the group work session,
we divided families into four and talked about their deceased children and their feelings withhealthcare professionals who acted as facilitators in a group. In the second meeting, we had a lecture
presentation and an information exchange session. We held a free talk session with healthcare
professionals after the lecture presentation. We prepared a room for siblings while their parents
were having the group session.
In the room for siblings for the both meetings, we prepared games and some activities so thatsiblings were able to have fun. Children were encouraged to make handicrafts and play cards withHPS, nurses and volunteer staff. In the second meeting, we held a hospital adventure tour. We went
through places where their deceased siblings had often spent time such as a family meeting room, an
x-ray room, a hospital school, the building for pediatric outpatients. A cartoon character sticker wasplaced at each point or a room. Children were given a map and asked to find the sticker during thetour (Pic.1).

Picture 1．Hospital Adventure Tour

Picture 2．Images of a gathering for siblings
３．Result
The number of sibling participation was 18 for the first meeting and 21 for the second one (Table1). The objective of the 1st meeting was to let the siblings play freely. Children played happily for twohours while their parents were having other sessions. A boy who was attending the meeting wasplaying alone with his cellular phone and he declined to play with others initially. He,
however, gradually joined and played with children his age. When they were about to go home, theytalked to each other “let’s meet together again”. His mother told us that he had refused to visit
hospital and to watch dramas showing medical scenes since his younger brother died.
At the second meeting, siblings were again encouraged to play in the play-area for siblings while
their parents were having their sessions. There were children who attended to the previous meetingand they remembered the previous time and told us “I remember this card game because I played it
last time”. There were only two children who participated in the hospital adventure tour this timesince other children wanted to stay on a craft-making activity and other activities. During the tour,
thoseparticipating

childrenweretellingus“Iremember

thatXX (thenameoftheir deceased sibling) was here in this hospital”.
While we were walking through the hospital with children, we ran into a mother and her child who
also took a tour to see a room where their deceased family member once stayed. The mother wassaying to the child “Your sibling was very brave here” with tears. The child seemed a little awkward
to see his/her mother crying.
Regarding the play-area for siblings, we received comments from families such as “It was helpful
because we were able to attend at our session without concern for our children who were well takencare of in the children’s play-area”. Further, in some cases the communications between families
were facilitated through children.
Table 1．The breakdown of the participants
InfantToddler

5~7 years old

8 years old~

The 1 Meeting

４６６２

The 2nd Meeting

２７４

８

Number of Meetings
stUnit：（person）

４．Discussion and future tasks
While children are staying in hospital, their siblings are not allowed to visit their sister/brotherfreely. Consequently, it is considered that siblings are not provided enough opportunities tounderstand the situations. Especially during the terminal phase of illness when families spend mostof their time with their sick children, all family members including siblings need psychologicalsupport. Siblings who are not provided enough information may develop distorted or incorrect
impressions about hospital and medical care.
Often siblings are allowed to see their brother/sister in hospital only during the terminal
phase. The appearance of their brother/sister whom they have seen only sometime ago may havechanged dramatically by then. Along with unfamiliar medical apparatus, the sibling may develop
negative images including feelings of fear and anxiety toward such situations. A boy whoparticipated in the first meeting also started refusing to see hospitals and medical related dramas
after having lost his own brother. It may relate to images that he had developed during his brother’s
terminal phase. Initially the boy preferred playing alone and seldom responded to us when we
invited him for games and handicrafts.
We assumed that his rejection was a sign of his negative feelings toward hospital and healthcare
staff. After a while, he joined other children by saying “I want to do the handicraft too”. He thenstarted playing with children around the same age as he with a smile on his face. As he played withother children, he spoke more and more. By the end of the day, he was promising with other children“Let’s meet here again someday”. His change of attitudes during that day indicated that he would be
able to come to the next meeting much easier than this time. The objective of both meetings withsiblings was to spend good time together and the meeting itself was not to provide any special
support to siblings as bereaved relatives. It seemed however, that spending good time in hospital
was indeed acting as a kind of grief therapy.
The objectives of the hospital tour of the second meeting were to let participants know places
where a deceased sibling spent time, to provide opportunities to have familiar feelings toward
hospitals, to lessen their negative feelings of the hospital and to solve questions andmisunderstanding about the hospital. One participant lost his/her sibling five years ago. Though theparticipant was only around 5 years old when his/her sibling passed away, he/she was saying to us “I
do remember that XX (the name of the deceased sibling) was staying here”. It showed that thecertain image or impression of hospital was imprinted on his/her memory.
Families told us about the reasons that they brought their children to the meeting; “we wanted toshow our child the place where their deceased sibling had shown their courage to us”. It seems thatknowing where diseased one had stayed helped siblings to reflect and share their memories of
diseased one with other family members and to express their hidden feelings about their loss.
Currently, no matter if it is during the terminal phase or not, support for siblings is not provided.
It is however, that the image of hospital definitely has some impact on their lives and memories.
They may suffer anxiety and anger toward their experiences and may have difficulties dealing withsuch negative feelings. If we allow them to see their siblings more freely and let them spend moretime with healthcare staff, it may help them not only to avoid isolation from the situation but also toprovide a better image of hospital and healthcare staff. One way to support siblings may be provided
continuously through the sibling gathering when we hold the bereaved family gathering.
Gatherings inviting only siblings, meetings that encourage both siblings’ and healthcare staffs’
participation and some interviews with siblings shall be considered to hold in the future so thatsiblings can be involved in the situations more during their brother/sister’s hospital stay. Regarding
hospital tours, requests of siblings / families shall be reflected more and a private tour shall be held
depending on cases. With time, we would like to mature the bereaved family gathering that involves
siblings and to provide our support as HPS with empathy.

＜References＞
Satomi Takahashi (2012). Grief Care. Medical Friend Co., Ltd.
Ikuko Oikawa (2010). Preparations for Children Supported by a Team. Nakayama Shoten Co., Ltd.
Mika Chaen et al. (2014). Team Support for Children with Cancer and Their Families. Nursing
Today, 29, December, Japanese Nursing Association Publishing Company.