Case Studies of Hospital Play in Japan No.1

Home Care Support for 3-Year Old Child with SMA Type I and Her Family
Yoko Nakayama(Shizuoka Children’s Hospital)
Abstract
In this article, home care support through a play program provided to a 3-year old female
with Infantile Spinal Muscular Atrophy (SMA Type I) and her family was reported. Playsupport was provided considering the level of the patient’s development so that the subject
was able to participate in playing as actively as possible. Different types of play were designed
for the subject to practice her remaining functions and abilities. Consequently, it was revealed
that the subject came to select what she wanted to do, play practically by using her sensory
ability, fingertips, imagination and understanding. In addition, it was evident that she wasable to utilize her remaining physical functions to communicate with others. A number of
supporters, including nurses, OT (occupational therapist), helpers and volunteer staffs,
involving for her care influenced positively to the subject and to her family. This report
indicates an example of how play support shall be provided to individuals with severe
disabilities/disorders.
Keyword： SMA Type I Play of 3-year old Communication HPS Home Assistance
I. Introduction（The purpose of the study）
Though medical care for patients who stay home is found important, the importance of play
support for such patients tends to be overlooked. In the research report “Support program forself-reliance on long-term home-cared children (長期療養児の在宅自律支援プログラム )”,Suzuki and her colleagues reported, that not only the importance of physical health support
for home-cared children, but also the development of long-term educational support systemshould be given attention since such children nowadays were able to survive longer than everbefore. This is due to the advancement in therapeutic techniques. In terms of communicationfor example, few children were able to express their will using existing communication tools
including speaking in a way that everyone would understand them. In reality, according toSuzuki, there are few cases where home-cared children receive enough psychological andeducational support while their health aspects are well cared for1 .
）All children, even with physical/mental challenges, seek fun through playing depending on
their own development. No matter how old they are, children feel frustrated if they are given
only passive materials such as children’s books and TV. All children want to “play actively”
and “take initiative” to express themselves. It is considered that the development of children
shall be promoted significantly once they find that active playing is really fun and that
expressing their own wills to others is really possible. Sato and her colleague also state, thatto develop communication skills not only provides a means to express one’s will, but also
promotes children’s other activities. It is, therefore, that communication is one of importantsegments to support children with severe/multiple disabilities 2 .
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Case Studies of Hospital Play in Japan No.1

In this report, active play and effective communication tools considering the developmentof a female subject who suffered from SMAI with severe motor impairment and speechdifficulty were reviewed.( particularly in terms of development)（Ethical Considerations）
We obtained consent for publication in print from the family after thorough explanation of
objectives of the study.
II. Case summary
K-chan（3-year old at the start of play support）
Date of Birth：April 2005 She was born in a private hospital. BW 3020g
Family：Father, Mother and a younger sister (1 year old)
Parents’ occupation：Self-employed（managing an acupuncture clinic）
Previous medical history of K-chan••

3 months old: She couldn't hold up her head. No strength in legs.
8 months old: Diagnosed as SMA Type I through genetic screening•

11 months old: Started tube feeding•

A year and 5 months: Had a tracheotomy and a respirator•

A year and 6 months:•

A year and 11 months: Underwent gastrostomy•

Intellectual development：Her responses and the understanding of language showed

Moved to home from hospitalthat her development is appropriate to her age•

Motor development：Unable to hold her own head, unable to sit up, unable to movelimbs on her own•

Remaining motor functions ： Eye movement, blinking, faint vocalization andfingertip movement, movement of month corner, movement of abdominal part
Note: ＊ Spinal Muscular Atrophy：Due to a genetic defect of spinal motor neurons,
muscle wasting and atrophy resulting in mobility impairments including walking
difficulty occur. In severe cases, dysphagia and dyspnea are seen during infancy. The
disease spectrum is divided into three types: Type I (Most severe form of the disease.
Occurs in infancy), Type II (Moderately affected form), Type III (Mildly affected form).

III. Play Support
1）Action assignment for HPS regarding the current play situation of the subject( would the term child be preferable to subject?)K-chan was brought to outside once a week, including visiting zoos, aquariums, andamusement parks. Common everyday plays were watching DVDs, reading books andpracticing Japanese alphabet by listening to actual sound of letters. Her parents took
her out (in the future, they would like to take her to Tokyo Disney Land) in order for
her to experience as many things as possible. She seemed to have a good environment.
There were some concerns regarding appropriate communication tools and hercommon play materials since she seemed to be just a passive receiver with them.
Accordingly, a play program based on her development was designed and practiced by
HPS.

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Case Studies of Hospital Play in Japan No.1

2）Plan and practice of play support（1）Annual support plan
[Goal] ：To design types of play that K-chan is able to play actively so that K-chan feels “I can
do it”.
[Practical strategies]
1

To obtain appropriate communication tool(s) based on K-chan’s ability and development.
・A communication tool that everyone can understand easily
To have a common sign indicating YES/NO
To show consistent attitude toward K-chan
Questions to K-chan should be answered by YES/NO
To wait until K-chan answers

2

To provide a type of play based on the level of her development that K-chan can choose
by herself, enjoy the involvement, and be satisfied with
From a passive participation to an active involvement
To let her paly with what she choose（a sense of contentment）

3

Musical play（singing a song together, etc.）

Sensory play（sand, play dough, bubbles and actual fruits, etc.）

To provide play support to maintain her remaining functions and abilities with fun To
encourage physical movement while singing ［Let’s touch♪］（Appendix 1）（2）A play list
HPS showed K-chan illustrations indicating types of play (a play list) andpointed one by one. K-chan then chose one type of play that she would like toplay.
（Pic.1）（Pic.2）

Picture 1

Picture（3）Monthly support plan（every two months）
A support plan schedule “Theme and play contents of the month”（see Appendix 2）
Themes were made to provide a sense of the season. Play contents were not changed
every time, but new items and contents were added in the previous play contents
reflecting the present season and her development.
3）Recording and evaluation of activities

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Case Studies of Hospital Play in Japan No.1

Recording K-chan’s states, evaluations of activities from the perspective of HPS and of her
family - General review (see Appendix 3)
K-chan’s status the HPS’s observations, and that of her family, was recorded every time
when the HPS visited. By reviewing the written record, the HPS tried to apply what they hadlearnt from the previous session to the present session so that HPS was able to provide morepractical and efficient play support as time went by.
At the first session, K-chan indicated by her facial expression “I want to play more” while
playing with soap bubbles and singing a song (Pic. 3).
During the past 10 sessions, K-chan became used to HPS around by and by. K-chan enjoyedplaying and showed her interest. At the same time, she came to understand ways tocommunicate with people by blinking and making sound from her mouth. Her facial
expression showed a sense of satisfaction when she played enough.
Her parents said that it was an eye-opener for them to know that playing would be an
important factor for supporting their daughter. They were happy to see that their daughter
enjoyed playing and they tried to participate in playing with her despite they had a busy
schedule. Her parents requested other helpers (nurses, care-helpers, OT and volunteers) torelate to their daughter in the same manner (Appendix 4).
Further, they even introduced the communication method that HPS did with theirdaughter into their business (pediatric acupuncture) since they agreed with the concept of
HPS’s work.

Picture 3 and 4

IV. Discussion

There are few studies on play support for home-cared children with severe handicaps. There
are none, especially, for studies on play support for children with SMA type I. To invent typesof play and tools for K-chan to involve actively, published books including Nursery Childcare
Guidelines, 『Let’s have fun with finger plays (みんなで楽しい手遊び)』4 ,『Ways to play.
）Let’s play with your mum! ( ママと一緒！！あそびの工夫)』5 ,『A picture book for infant play）

(乳児のあそび大図鑑)』6 and『I found my favorite play (大好きあそびみーつけた)』7 were））referred for this study. For plays requiring physical activities such as “Here we go round themulberry bush”, we changed our way of thinking and we went round K-chan instead of her
moving. How we could involve her in certain types of play, and how we should develop play in
a way that K-chan would actively enjoy, were our main focus when we innovated a type of playand eventually we created the play list for K-chan called “Which shall we play?” (Pic. 2).

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Case Studies of Hospital Play in Japan No.1

When we provided play support to K-chan, we always asked her to choose what she would
like to do and we tried not to rush for her answer. We consciously introduced to her some
sensory plays using water, sand, play dough and soap bubbles to stimulate her five senses.
Play using music and songs that required alternating performances (kakeai) were used, sothat K-chan did not have to listen to the music passively but enjoyed active involvement withus. K-chan seemed very happy during such music session.
One of K-chan’s characteristics was that she never gave up. It was prominent when she
played with things that she chose. As Watanabe and colleagues state “When a request of achild is granted, the child comes to understand that he/she can make a change in a given
situation through expressing his/her own will 8 ”, it was evident that K-chan also came to）understand that her request would be granted by sending her messages throughcommunication tools understandable to everyone. By this understanding, her everyday life
shall be more active than ever before. It was clear that the play support that had been provided
to K-chan appeared significantly effective and the result indicated the importance of play forchildren with disability. It was also indicated that children’s development would be promoted
when they were stimulated with various types of play.
Our support for K-chan continues. We are working on an integrative support for K-chan incooperation with her family, nurses, OT, helpers and volunteers by focusing on her remaining
physical functions, especially her eye movement, in order to have better communication withher. In addition, we would like to educate society that the importance and the necessity of play
support in children with disability and their families.
Acknowledgement
For this report, I would like to show my gratitude to HPS staff for providing theirsupport, and people in the HPS office for comments that greatly improved the report.
References
Machiko Suzuki (2006). Support for self-reliance on long-term home-cared children:
Comparison with support for home mechanical ventilation in children in Japan and a
program in New Jersey. 2005 Research report subject to a grant from the Yuumi memorial
foundation for home health care, 30.
Mariko Sato & Shinji Aoyama. Ways of personal care for children with severe/multiple
disorders: Through teaching focused on everyday living, developmental stages andcommunication skills. Journal of Hokkaido University of Education, 60(2), 71-82.
Children and Families Bureau, Ministry of Health and Welfare: Nursery Childcare Guidelines(2008). CHILD HONSHA：46-51
Kumiko Honma (2008). Let’s have fun with finger plays. NIHONBUNGEISHA
Akira Naito. Ways to play. Let’s play with your mum! LedyBoutique, Boutique-sha, 987
Michio Kawasaki & Asobi Editorial Committee (Eds.) (2009). A picture book for infant play.
Kamogawa Press.
NPO Nanohana Kai Nanohana Kyodohoikuen (2004). I found my favorite play．Otsukishoten.
Ruriya Watanabe, Mikio Uchiyama, Toshihide Koike (2006). The support of requests byacquisition of chaining of figural symbols and evaluation of the support by NIRS in persons
with profound retardation. Bulletin of Tokyo Gakugei University. Educational sciences 57,
189-198.
Chika Matsudaira (2010). Introductory of Hospital-Play. Kenpakusha Press. 2010.

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Case Studies of Hospital Play in Japan No.1

Evaluation on Play Support Program

Date of Implementation: January 20, 2010•

Theme: Review of favorite types of play
• Chose a type of play that K-chan really liked in the previous sessions• Used eye movement as a communication tool during the play•

K-chan’s status on that day from HPS’s view
During the playtime with K-chan, I was paying extra attention to catch her subtle
signs. She was becoming good at moving her eyes to tell us her wills. I was impressed tosee that K-chan was really trying to show what she felt, by moving her face, fingers andbody. She enjoyed play sessions she chose for a long time and showed her “never-give-up”
attitude when she played with the ball race game. We sang a “kakeai (singing alternately)”song together. I’m glad that she had great fun. In the end of the session, she fell asleep
while we were playing with our fingers. It showed her satisfaction.

•

K-chan’s status from the parents’ view
Today’s play started with a type of play chosen by K-chan. K-chan was asked what she
wanted to do, by reading one by one on the list, and she gave us a sign (yes/no) by moving
her eyes. In the previous session, she learnt to move her eyes from side to side. This time,
we added “up and down” movement. With the eye movement, she chose the “tearing-up
newspaper” play and enjoyed the sound and feeling of the newspaper with the HPS staff.
Later, she played house by cooking the pieces of the newspaper on a toy frying pan, thenpretended to eat them. It was good to see that she associated one play with another one.
She also played with a ball rolling down a slide and hit the pins that represented
monsters. She struggled to let go of a ball. She looked really adorable when she wasworking on the ball with great enthusiasm. It also told us that we should place K-chan in
an appropriate position so that she could play easily.
She was baking a toy cake while singing with the HPS staff who was disguising as
Mickey Mouse. K-chan also enjoyed a magic show where many items appeared from amagic pocket. She was making many sounds from her mouth and expressed her joy bymoving her eyes and other parts of her body. In the end, she fell asleep while listening toa song “A song for K-chan’s hands”. It showed that she played well and really enjoyed.
Her face looked content.

•

Review comment (as HPS)
K-chan seemed to come to understand how to communicate with people by her eye
movement. It was obvious that she tried to move her eyes often. I don’t think that it willtake much time for her to communicate more effectively. Above all, I was grateful that Kchan seemed to accept the HPS and even fell asleep in peace. Further, her mother alsosang together and it showed K-chan and parents really used the HPS’s method in theireveryday life, even when the HPS were not with them.
We were grateful to her parents for talking to us openly, and for letting us learn theirstruggles that only families of children like K-chan would go through. We have seen that
their positive manners toward K-chan seemed to have provided good influences on K-chan.

6Case Studies of Hospital Play in Japan No.1

Let’s Touch

Let’s touch
Let’s touch
Let’s touch with K-chan(touch)(touch)(touch)Let’s do “poco-poco”(poco-poco)
Let’s do “poco-poco”(poco-poco)
Let’s do “poco-poco” with K-chan(poco-poco)
Let’s move your eyes
(move eyes)
Let’s move your eyes
(move eyes)
Let’s move your eyes with K-chan (move eyes)
Let’s talk together(Ah-)
Let’s talk together(Ah-)
Let’s talk together with K-chan(Ah-)
Let’s smile together(smile)Let’s smile together(smile)Let’s smile together with K-chan(smile)Let’s say good-bye(bye-bye)Let’s say good-bye(bye-bye)Let’s say good-bye with K-chan (bye-bye)7Case Studies of Hospital Play in Japan No.1

Which play do you like doing today?
June & July 2010

Theme:

Let’s play with water and sand!!

Objective

To make K-chan take initiative and enjoy actively
Note for supporters
Please ask “Yes/No” questions
How about following plays?

Musical Play

Let’s sing songs including “Let’s clap your hands”“aye-aye” “piggy-racccoon-fox-cat” “panda-koararabit” “The field of animal village”
Finger play: “Ton-Ton-Ton-Ton a old beard man,
Tickle-tickle-one straight bridge, A song for
Melonpan, Which color do you like?”

Sensory Play

Play dough, soap bubbles, sand, treasure hunting 1),
treasure hunting 2). To touch and smell actual
materials such as fruits. Handicraft with play dough.
Play with water, sand and mud.

Play using hands

Play rolling balls, play with PC (with touch sensor).
Play house, rain, tearing up papers, drawing pictureswith water paint, play dough, colorful arts

Play using
imaginations

Handy-dandy, children’s books, puppet, picture-story
show: “MOMIMOMI Doctor” “Alice in Wonderland”“Three Little Pigs” “Let’s play together”

Play forcommunication(YES/NO)

Quiz, games such as “Which color do you like?”

Physical PlayTo move body while singing “Let’s touch”, Here we go
round the mulberry bush”, Boiling hot boiling a pot”.
Communication exercise: “K’chan’s hands”
Helping-out exercise: Fluffy board


Note



Please make a day schedule with K-chan. Set
simple rules with her (ex. TV time, bed time, etc.)
Please create something that K-chan can help out
for you.
8Case Studies of Hospital Play in Japan No.1

For those who support K-chanChildren grow up through playing.
Children learn through playing.
But those are just by-products of playing.
Playing is fun. Playing brings a joy.
We forget time while playing.
That is the power of playing.
Like everyone else, K-chan wants to play.
She wants to experience fun, thrill and excitement, as much as possible.
Through such experiences, she will be growing up.
Furthermore, she will be seeing her future dreams through playing.
Please make as many play opportunities as possible for K-chan.
Because of her disease, her play opportunities will decrease without yourcreativity, imagination and innovation.
With you, however, she can play plentifully.
She can play limitlessly.
Please do not forget one thing when you offer a play to K-chan.
When she can “choose” what to do,
Please let her choose.
Please give her opportunities to choose things herself.
Which book do you want to read? Which colour do you want to use? Which song do
you want to sing?
Please give her as many chances to choose as possible.
Because she will feel that she is cared for through choosing things herself. She will
start recognizing her own “feelings” by choosing. Her personal quality becomes
more and more obvious and you can feel it by and by. As she becomes mature, shewill learn to take responsibilities of her choices. That is a step to become a mature
adult. Unfortunately, experiences of both “playing” and “choosing” of many
children in a care environment are lacking.
Children live in the present.
They watch with their glittering eyes the world around them.
Now, let’s begin play support!
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