Music therapy for children with special healthcare needs

EVIDENCE BASED GUIDELINES FOR CARE WITH MUSIC THERAPY IN CSHCN

Dr Suvarna Nalapat

First formulate basic guidelines and then implement them into practice.

1.The small circle of improvement model:-Plan—Do-study and analyse the effects subjectively and objectively-and then act and improve on the model.
2.Longitudinal continuity of care.
Requires long time follow up and contact with child and family.Therapist must be available for long term consultation.(either in person/or by email/phone etc)
3.The orderly transfer of care from expert therapist to the assistant can take place gradually when the assistant gets confidence to deal with the problem.
4.It should be family centered care.

Role of doctor/clinician/therapist is at two levels
1.Care of individual child and at family level
2.Development of systems of care at community/population level

THE BASIC PLAN

1.The first and the most basic is the proper evaluation of the child and diagnosis by the PCP/Paediatrician and then involvement of a team of specialists
2.The therapist is a member of the multidisciplinary team .Should be able to communicate and work in unison with them.
3.Verbal and written communication between the team members is facilitated by a diary in which each member notes down the observations at each visit and this is kept with the child/parent and sent to school/to therapists/specialists so that each is aware of the progress and condition of the child and what he/she is getting as intervention.


After having a pretest knowledge of the condition of child from teacher/parent/doctor the therapist can plan the strategy.(The pretest here means the condition before music therapy started )

4.From assessment of the pretest condition provided by the team,the therapist has to group the clients and then do group and individual assessment of the clients
5.Grouping :-Can be done in different ways according to the combined decision of the team.
The different varieties of groupings are in order of preference
A.Infant-toddler groups,preschool group,school age,and latency/adolescence group
B.On a basis of class .as given by the present team.at Adarsh School Ernakulam)
C.verbal-nonverbal (which is not very good procedure)

6.The groups of children with the parents attend the group sessions.

The methods are variable for each group depending upon its requirements as well as for each child.But in the initial 15 days the groups are given a test model.

Have a sruthipetty/Thamburu/or even a keyboard with you and to its sruthy just repeat sa pa a saa /mandra shadja with athitaara shadja/or mandrashadja with G3 or N3 as in Panthuvaraali /Rasikapriya etc.Just the swara only with sruthy.
The two notes used should be at recognizable distances .This is especially of use to test the children without language or with monosyllables alone who will try to make sound as the pitch we used .This need not be perfect.But let them be free to make whatever sounds they please .The turntaking,the pitch ,etc and the time taken for each child can be noted down in diary.Some children take more time ,even days.Sometimes they just keep quiet for three or four days and start making cooing/babbling noises after 4th or 5th day,indicating that they had been attentive/listening/learning(cognition/memory improvement).
In the initial period children may not tolerate more than 30-45 minutes of this.Some may tolerate more time.These variations have to be noted and remembered by teacher and parent.Initially if the child sits for 20-30 mts it is enough.Later when he/she becomes interested in music they sit more.The creating of interest in music is the art and efficiency of the therapist/parent teamwork.To which teachers can contribute a lot.
At home parents can casually start singing the same notes if they can sing.And see whether the child respond by any making of sounds.Better still is a recorded sound of music therapist to which played at home the family /and the siblings sing in pitch.That might be a stimulation for the child to make sounds.
When selfconfidence come they will start in groups also.

For those already having singing skills low frequency raagaas are selected and the familiar music sources used first.Better to use only vocal so that there is no attention problem from background noises of BGM.Because the autism spectrum is a disorder of sense organ functions the distractions may be too much for them to concentrate on one thing.

About the pretest EEG and fMRI :-

This is for research and for community programme(for further care of the future children who may be affected with the same disorder) and does not have much role or rather limited role in individual childcare.The fear the hospital/equipment/conditions of the research can create and stimulate the amygdale can be of negative influence to the music effects on individual child.Most of the available data are on volunteers and parents of children with autism who volunteered etc..And the family and the autistic children were known to the researcher for long time so that the fear complex was minimized.
So, if these are planned we can do it this way.This is a suggestion which we can discuss in detail,in case the parents are willing .(If not,this should not and cannot be done)

1.Do pretest assessment before the sessions of music therapy starts and have a baseline value ..
2.In those children who have shown definite improvement and who can tolerate external fear situations ,we can do a posttest after three months of intensive therapy and compare pre and post tests
3.In the intermediate group of responders we can do the posttest after 6 months of intensive therapy and in late responders one year after the intensive therapy.

4.If possible restrict this only to children who have passed the adolescent stage and not on toddlers and young children .
5.Make sure the client you select can withstand the procedure for the required period of time and will not be frightened or made worse by the procedure because there is disordered sensory function in these children.Explain the entire procedure to the parent/caregiver /teacher before launching on the project and only with their consent and co-operation do the research.
6.Whereas the music therapy is a very safe procedure without any side effects,the neurological research programmes could be stimulating the amygdale and cause fear complex and therefore the entire time or duration needed for the test ,its implications etc must be informed (Informed consent)to parents in detail.

Thus we have one pretest and posttest value for all children but at different intervals depending upon the response.

This is a broad outline of strategy which we have to finalise.

The principles are
1.Acknowledge each child as a unique person and valuable
2.Inform,empower ,communicate with parents/caregivers and across the care continue to the community health programmes
3.Participate as fully as possible in the childs care
4.This is a nonjudgemental family centered casemanaged care programme .
5.How to participate and advocate?By having close communication with children and parents and teachers.,By making systematic models for management,Pushing the policy and programme changes in support of high quality care ,continue to remodel according to needs of the child as he/she grows

The dimensions of quality care are

1Safe Free from negligence and does not cause harm to patient or community
2Effective Overuse of ineffective care and underuse of effective care should be avoided.In the case of music it is underuse of an effective tool.This effective tool to be used matching to scientific principles and improving community health
3Client centered Honouring each person and respecting the choice of the client and family
4Timely Should not delay the process of growth
5Efficient Reduce waste of energy and time by systematic plan and management in advance by careful study /research /plans
6Equitable No racial ,class,sex ,wealth inequalities in health care by music therapy..All alike in God’s eye and in nature’s eye and in healthcare professional system.


Policy decisions:
1.Evidencebased practice .The explicit use of the best evidence to inform decisions about the care of individual patient.
2.Quality measurement and improvement .
3.costeffectiveness of the programme
4.Public release of quality information
5.interoperability that links clinical,public health ,school,and family data of children with developmental delay through medium of music
6.standardisation of data by a team of experts –team work .
7.Translating research into practice

These are the broad outlines on which I have worked out the programme.