Home Care Programme for Disabled Home Care Programme for Disabled ChildrenChildren

Robyn SmithDepartment of Physiotherapy

UFS2012

Dealing with a parent whose child Dealing with a parent whose child has just been diagnosed with CPhas just been diagnosed with CP

Most often extremely anxious and distressed

Most concerned about the implications of the diagnosis on their child and their family’s future

Stages of acceptance (Elizabeth Kubbler Ross) namely:DenialAngerBargainingAcceptance

The physiotherapist is most often the member of the inter–professional team that the parent spends the most time with

It is important to be able to listen, appropriately advise and support the parents of the children that we treat

What physiotherapists should tell What physiotherapists should tell parents at outsetparents at outset ? ?

• What is wrong with their child in layman’s terms

• What typical problems their child may experience due to their brain damage

• Need for physiotherapy intervention and the possible benefits relating to the child achieving his maximum potential

• Why comprehensive initial assessment important

• Explain what to expect from therapy sessions

• Can give an indication of long term prognosis

What physiotherapists should tell What physiotherapists should tell parents at outsetparents at outset

• Explain implications not receiving therapy

• Understand their responsibility and role in term of carryover and compliance with home programs given. As physiotherapist we often take role of a teacher/facilitator and need to empower the parent.

Things to be taken into account when Things to be taken into account when planning a home programmeplanning a home programme

Frequency of visits to the physiotherapists –approach will differ greatly depending on how regularly the mother can attend therapy

Be realistic in your expectations of parent/ caregiver

Insight of the parent /caregiver

Literacy level of the caregiver

Level of functioning of the child

Home program and therapy goals must be aligned

Needs of the family and the home environment

Use equipment and toys available at home be innovative teach mom how to make own toys if indicated

What should be included in home based What should be included in home based programme for a mother who can only come programme for a mother who can only come infrequently for therapy?infrequently for therapy?

Advice regarding kinetic handling for mother Positioning advice for sleeping, sitting play and feeding. Regular

position changing Pressure relief and position changing Seating – wheelchair/buggy/box Handling advice e.g. how to pick child up Basic facilitation skills PM and stretches with safe handling joints and soft tissue structures Tone inhibition techniques where deemed appropriate Appropriate stimulation Try and incorporate functional activities and active participation of child Looking after a severely disabled child is a full time job !!! Someone else

at home a second person needs to be involved in care child. Primary caregiver must make time for herself.

Arrange for suitable care facility placement or schooling where indicated preferably within the local community.

HOME PROGRAMME NEEDS TO BE INDIVIDUALISED !!!!!

How does this programme differ from that of a How does this programme differ from that of a mother who can come more frequently for mother who can come more frequently for therapy?therapy?

Principles remain the same as above Information is passed on more slowly Mother can be taught more complex handling and facilitation

skills over time

Some general advice guidelinesSome general advice guidelines

General comments…..General comments…..

Provide parents with alternatives

Always explain why you advise one way above another

Often the mothers have good ideas, ask them to show you what they are doing at home first

General guidelines: spastic ChildGeneral guidelines: spastic Child

Sleeping position : if child has severe extensor thrust can tie a sheet to the corners of the bed to aid in flexion, use side-lying this is often a good position which allows one to break the spstic pattern

If the child is difficult to position one can wait till the child is asleep

Picking the child up: handle through side lying, give compression through sternum to aid in flexion, bring child into sitting first. Pick up in a seated or prone position In case of severe spasticity can place arm through the legs

Feeding in sitting on lap ensure that both arms are brought forward, and that the head in in the midline as this aids in swallowing

Can also position child in a box/ corner or against a bed

Early “sandwich standing”, moulding of the feet against the leg, deep pressure massage NB to prevent hypersensitivity

General guidelines: spastic ChildGeneral guidelines: spastic Child

When dressing a spastic child May need to initially inhibit tone in the UL, first put over head and then arms, dress the most effected side first

When changing nappies be careful of giving too much flexion of the lower limb as as this can be detrimental to th cervical spine and may over-mobilise the lumbar spine. Lift one leg into flexion at a time and add a bit of rotation to brake up the spastic pattern

Positioning the child in prone is important. If child has extremely poor head control, this position can be used during “play time”. Can place a rolled up towel under the axillas. Prone plays an important role in the development of head control and WB on the arms. A wedge cushion also works well.

General guidelines: athetoidGeneral guidelines: athetoid

Most important thing is to provide the child with sufficient stability to allow mobility

When undressing/dressing ensure adequate stability (allow child to sit between your legs) and ensure a good position

Possibly use velcro rather than buttons on shirts and pants

Avoid things like sweatshirts and jerseys that have to go over the head

Allow the child to assist and provide help only where needed

General guidelines: athetoidGeneral guidelines: athetoid

In wheelchair provide enough stability e.g. through use of crossed straps

If sitting on a chair ensure that the feet are placed flat on the ground

Wheelchair tray can rather be placed at an angle or use a wedged surface on a table.

To avoid M-sitting on a mat, rather supported high sitting or side-sitting

Movement must be slow and controlled

General guidelines: hemiplegic childGeneral guidelines: hemiplegic child

Teach the mother how to inhibit the tone in the arm during dressing

Can also give a sustained stretch to the arm during dressing

Always dress the affected limb first

Child can sit in a corner to provide adequate stability

Can put on the pants in supine, child can simply bridge to get them on

Sit on a small stool or chair to put on the shoes

Use shoes that close with velcro straps, and avoid slip on

General guidelines: hemiplegic childGeneral guidelines: hemiplegic child

When sitting at a table, ensure that the hemi-arm is forward

If hemi –hand is severely spastic use a velcro glove or clay ball to keep the hand more open

Position bed, activities etc. so that the child has to look over the hemi-arm to avoid neglect

General guidelines: hypotonic childGeneral guidelines: hypotonic child

Mother can be shown how to aid in giving stability Mother can be shown how to give compression through

trunk Alignment of trunk must be symmetrical in order to avoid

postural deformities

The “abba”The “abba”

When giving home advice it is also critical to be culturally sensitive

In African cultures children are often “abba”ed as a mode of transport as mother often have to walk long distances with child, and this also frees up her hands for carrying.

Very difficult to stop!!! not a good position as arms are abducted and flexed and the legs are very widely abducted, the neck is also often in flexion

Advise that only used for transport, show mother other alternatives

Monitoring Home programmeMonitoring Home programme

Let caregiver /parent demonstrate exercises and activities shown as a home exercise to make sure understand what you want them do and control execution

On next visit ask caregiver/parent to show what they have been doing at home

Allow them opportunity to give feedback about success and problems they have had

Be strict – their child is their primary responsibility and their commitment and active involvement is essential to the child outcome in achieving optimal functional level.

Support GroupsSupport Groups

Parents often find great comfort and support from other parents with disabled children who understand their anguish and frustrations.

Try and refer them to or involve them in support group.

Consider starting own support group or run an interdisciplinary support group.

Group TherapyGroup Therapy

Group therapy or classes also a nice alternative or adjunct to individual therapy

Group therapy often works well with chronic and severely disabled children–can be inter- professional

Aids in time management where workloads are excessive and individual therapy is not and option.

The child in their community….The child in their community….

Important to integrate the disabled child into the community in which they live so that:

He/she can play with other children his age Attend school Be involved in community activates e.g. church Gain the support and assistance of other community

members

Barriers are most often: Inaccessibility e.g. stairs, roads, lack of public transport etc Prejudice of able bodied persons

Home visitsHome visits

Where possible these children should be visited at home as this allows the therapist to see first hand the challenges faced

Correct adaptations and adjustments to the environment can then be made more easily

Regular home visits by community therapist also ensure that the execution and compliance of the home based programme can be regularly monitored

ReferencesReferences

Images courtesy of Google images (2009)

Smith, R. 2009. Paediatric dictate (unpublished)

Finnie, N.R. 1974. Handling the you cerebral palsied child at home. 2nd ed. William heineman, london.

Linström, P 2008. Department of Health, Free State home programmes

Gelukspan Centre, Reakgona. Physiotherapy department. 2000. Cerebral palsy … is not witchcraft. A handbook for learning, teaching and challenging Cerebral Palsy for and by therapists, therapy asistants, CBR workers and mothers.