Siblings: The forgotten Casualties Chantel LowrySocial Worker

Introduction

• Most life-threatening illnesses in children are rare, but they have wide reaching effects.

• These effects continue long after diagnosis.

• There are interventions that can help to decrease the collateral damage.

• This talk is for parents, doctors, psychosocial staff, nurses, volunteers, anyone who deals with children with life-threatening illnesses.

We have noticed…

• The siblings experience various difficulties –problems at school, with behaviour, eating , sleeping etc.

• This happens with siblings of patients treated at both the government and private hospitals.

• These are experienced sometimes pre diagnosis (then exasperated), at diagnosis, during treatment and post diagnosis.

Who are the siblings?

• Brothers and sisters of the diagnosed child but also cousins etc. who may live in the home.

• Siblings from Johannesburg and Pretoria government and private hospitals where there are dedicated paediatric haematology and oncology units.

How do siblings feel?

• Often feel lonely

• Disempowered

• Left out, focus on sick child

• Uninformed around siblings diagnosis and treatment

• Helpless

Parents overwhelmed with dealing with a sick child that the siblings become the forgotten causalities.

Camp Footprints and CHOC

• Having identified all of the above, CHOC Childhood Cancer Foundation in collaboration with the Just Footprints Foundation decided to hold a siblings camp to address some of these issues.

Who attends?

• The camp is attended by:

- Siblings

- CHOC psychosocial staff

- Volunteers from CHOC

- A Doctor/nurse

- Camp footprints volunteers

Camp Aims and Objectives

• Let the siblings know they are not alone.

• Work through a therapeutic workbook supervised by CHOC psychosocial staff and trained volunteers.

• Provide opportunity for their questions to be answered.

• Have fun!

The Camp

Now I’m going to explain and show you how the camp runs.

Anticipation and Anxiety

• The children do not always know why they are going to camp.

• They are in a group of strangers / new people.

• New experiences – Fun but scary.

• The unknown can cause anxiety, what is going to happen at camp?

Our Arrival

Diverse group of staff, volunteers and campers.

Medical Unit and check in

On arrival all volunteers and campers have to check in at the medical shack and complete a medical form – for safety reasons.

This is done by the nurse at the camp and/or doctor.

All medicines are given from the med shack.

Place to rest or sleep if anyone is not feeling well.

Building Team Spirit & Bodycheck

Builds group Identity.

Incorporates safety in a fun way.

Increases energy levels.

Previously CHOC staff and volunteers were part of the bodycheck –now only camp footprints volunteers.

Team discussion - Workbook

CHOC staff and volunteers –briefing of workbook.

Orientates any new comers.

Removes anxiety as everyone knows what to do.

Usually takes place late afternoon, early evening round the fire, creates a sense of being a team.

Early morning wake up drums and exercises

Group exercises create a sense of belonging.

Some do exercises while others go on the game drive, everyone gets to experience each activity.

Meal Times

Everyone eats at the same time.

Orderly process.

Everyone sits together.

Healthy meals enjoyed by all.

Inspections and Cabin Chats

Pride, sense of responsibility, caring for their belongings and environment.

Cabin Chats: different forum for discussions -subtle empowerment.

Super Camper

Pride

Affirmation

Builds self-esteem

Encouragement

The Workbook

The Illness

Feelings

Support for the future.

The Illness: Doctor’s visit

Discuss what they know about their siblings illness.

Let them write down any questions they might have.

The doctor comes to answer their questions.

Feelings

Express and normalise feelings, share common feelings.

Feelings

Togetherness

Language barriers – Pictures are universal

The Result

Fun Activities

Excitement, new experiences

Swimming

Gives children time to process workbook.

Break from theintensity.

Little ones haveshort attentionspans.

Concert / Performance

Increases confidence, group creativity

Stargazing

Educational

Fun

Calming

Connect with nature and something bigger than themselves.

Final Day Activity

Creating memories!

Memories

Reminder of camp when at home.

A meaningful souvenir

Certificates

Encourages self-respect / worthAccomplishment

Team Debriefing

Discuss how it was and what can be improved.

Lead by Alta, now Thabo – staff empowerment.

Outcomes

• Siblings realised there were others going through a similar experience.

• Expressed feelings

• Saw it is okay for them to be happy & have fun.

• Many questions answered.

• Many accompanied their sick sibling to clinic on Monday.

• Humbling and rewarding for staff and volunteers.

www.choc.org.zaCHOC Childhood Cancer Foundation

ChocfoundationChocfoundationSA

Headoffice: 086 111 3500headoffice@CHOC.org.za