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

W HAT IS P ALLIATIVE CARE FOR C HILDREN ? “Palliative care for children is the active total care of the child's body, mind and spirit, and also involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment 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.

I SLAND HOSPICE TEAM  Social workers intervene from diagnosis stage & continue after death Bereavement support  Nurses & Doctors pain management, end of life care & preparation for death  Community caregivers trained in basic home care skills(identify and refer) physicalsocial spiritualMental

I SLAND HOSPICE MODELS OF CARE Facility based Hospice Hospitals Rural clinics Outreach Road side clinics Children’s homes Home care teams Provision of holistic quality and affordable Paediatric palliative Care

P SYCHOSOCIAL 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 report 2. Guardian/Carer’s report 3. Palliative care team’s report

H OW ….?  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

C OMMUNICATION IS KEY !! Children’s language Body Withdrawn posture Play Music Drama, games Poetry Drawings paintings Spoken

K EY 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

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

C ONCLUSION  Paediatric psychosocial pain exists  Often under diagnosed and under treated.  However, correct assessment can lead to appropriate interventions  Relief of pain  improved 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