PALLIATIVE CARE

For

CHILDREN :Island Hospice approach to psychosocial care

We can put life into their days but not days’ into their lives.

Mildred N.Bosha

INTRODUCTION

Sub –Saharan Africa # children vulnerable & Zimbabwe not been

spared: Orphan hood Living with a life

threatening illness Young carers They need care and support understood/ treated

differently to adults.

“…they are children and not little adults”.

Communication Pain and symptom

management Understanding of death

and dying Family roles Experiences of

bereavement

WHAT IS PALLIATIVE CARE FOR CHILDREN?

“Palliative care for children is the active total care

of the child's body, mind and spirit, and alsoinvolves giving support to the family.It begins when illness is diagnosed, and

continuesregardless of whether or not a child receivestreatment directed at the disease.”

World Health Organisation (1998a)

CONT………

The WHO definition of PC for children stresses --o Evaluates & alleviates distress o developmental & psychological aspects of

needs. o Multidisciplinary approach

Therefore PC directed at reducing further disadvantage

multidimensional & person-centred approach.

ISLAND HOSPICE TEAM

Social workersintervene from diagnosis stage

& continue after death

Bereavement support

Nurses & Doctorspain management, end of life care & preparation for

death

Community caregivers trained in basic home care skills(identify and refer)

physical

social

spiritual

ISLAND HOSPICE MODELS OF CARE

Facility

basedHospiceHospitalsRural

clinics

OutreachRoad side clinicsChildren’s

homes

Home care teams

Provision of holistic

quality and

affordable Paediatric palliative

Care

PSYCHOSOCIAL ASSESSMENT

Psychosocial issues arise as soon as child develops symptoms perceived as life threatening.

It is a loss and the child and family begin grieving process at this stage.

3 approaches: 1. Child’s report2. Guardian/Carer’s report3. Palliative care team’s report

HOW….?

Holistic (use of tools e.g. smiley faces scale) Ongoing Needs of family and child Family structure and dynamics (e.g.

genogram) Within socio-cultural context

Also consider: Age of the child Cognitive ability Disease stage Community circles

COMMUNICATION IS KEY!!

Children’s language

BodyWithdrawn

posture

PlayMusic Drama,

gamesPoetry

Drawingspaintings

Spoken

KEY ELEMENTS TO EXPLORE:

Knowledge of disease & reactions Causes of pain Meaning ascribed to pain Behaviours Memory of similar experiences Coping mechanisms Beliefs & attitudes towards treatment Available support

MANAGEMENT

Trust building Information and education Multi disciplinary approach Use non pharmacogical therapies Play therapy Group work Family involvement and support

CONCLUSION

Paediatric psychosocial pain exists Often under diagnosed and under treated.

However, correct assessment can lead to appropriate interventions

Relief of painimproved physical well being and ultimately improved quality of life.

“You matter because you are you. You matter up to the last moment of your life. And we will do all that we can to help you to live until you die.”

Cicely Saunders