1. Supporting families returning home after their child’s cancer treatment
Penny Slater, Program Manager Queensland Paediatric Palliative Care, Haematology & Oncology Network

2. The problem
Approx 200 children diagnosed with cancer each year in Queensland – about half of these live in regional areas.
Paediatric cancer centre at the Lady Cilento Children’s Hospital (previously Royal Children’s Hospital) in Brisbane.
Shared care arrangements with 10 regional hospitals and support from 8 other regional hospitals, allowing some low risk treatment close to home.
Many caregivers report feeling overwhelmed by the complex treatment regimens and supportive care needs of their child.
Research has identified significant impacts on health related quality of life for caregivers - physical and psychological health, and emotional and social functioning.

3. Aim of this project
To improve the experience of families with a child receiving treatment for cancer
How - ask the families

4. Method – Discovery Interviews
Developed in UK in 2000
Now widely used in National Health Service
Explore the impact of illness of patients & carers
Specially trained interviewers not involved in patient’s care
Help the person tell their story with minimal interruption
Spine = key stages

5. Discovery Interviews – our spine
Thinking something was wrong
Seeing someone in the health system
Having tests to find out what was wrong
Being told what was wrong
Receiving treatment
Being followed up
Living with your condition
Learning to cope with the future

6. What do we do with the Discovery Interviews?
Interviews transcribed, de-identified and condensed (including family names, clinician names, specific diagnoses and treatments etc)
Read to clinical teams
Teams reflect on the story
Discuss how we can improve the patient/family experience?
Our service processes
My individual practice

7. What’s so good about Discovery Interviews?
Interview is not based on questions devised by the health service, so we hear what is important to families
Impartial consumer feedback - reflects the reality of their whole experience, not limited to one incident
Information from a broad range of detailed experiences
Opportunity for the parent to reflect on their experience
Families feel that their experience is important to us
Reminds us about why we are here
Improving the service & individual practice
Improving family & patient outcomes

8. Interviews at Royal Children’s Hospital Brisbane
Commenced March 2012
17 interviews collected
Stories read back to clinical teams in 20 meetings with staff
Parents and staff both found the Discovery Interview process engaging and insightful
53% of staff rated the process as extremely valuable and 46% as valuable

9. Results Several themes came out of the interviews
One strong theme was support for the family required after treatment, when they returned home
Subthemes
Psychological impacts
Relationships
Practicalities – returning to normal, school, money, clinical

10. Psychological impact - child
Fear of treatment
Regressing or becoming stronger – life lessons
Moving forward and not talking about it – positive goals
Death of friends
Behavioural issues – temper tantrums

11. Psychological impact – parent/s
Life changed forever – blame myself, carrying it around, grief and anger
Scanxiety – fear of relapse, sleep issues
Isolated
Balancing 2 lives – hospital and home
Coping strategies – writing a book, think positively, psychologist, anti-depressants

12. Relationships
Child
School friends – maturity, social skills, different life lessons
Closer to parent that stayed at hospital?
Siblings
Missed parent in Brisbane
Resentful of attention – ipad, didn’t have to eat all food
Be open with them, do special things with them, Siblings Day, Camp Quality, CanTeen

13. Relationships Parent Spouse – protected them – great leveller
Mend and rekindle
Nervous about going home
Let go from being child’s advocate

14. Relationships Extended family / friends
Segregated due to fear of infection
Lack of understanding re length and severity of treatment
Goodwill runs out, they think it’s over
Guard and protect them
Oncology families
Honesty, nothing to hid
Support groups like antenatal care
Facebook support
Contact with hospital staff
Newsletter?

15. Practicalities
Normality - Trying to create a predictable, stable environment for family
School
Physical limitations/fatigue
Wheelchair?
Career choice
Back into sport, functions
Hair growing back – or still no hair, swollen from steroids
School content missing
Going back to their own year? OP?
Home schooling during treatment

16. Practicalities Clinical support Immunisations
Monitoring and scans – local health providers and tertiary centre
Fertility
Financial issues – back into work
Respite / baby sitting
Travelling

17. In summary….
Cancer treatment is a stressful event for the whole family
Impacts family – psychologically, practically and in their relationships with each other and the community
Regional families – extra element of splitting up the family, sometimes for months. Going home can be exciting but nervous time for families
Want to get back to normal, but they report their lives have changed forever
How can they be supported?

18. Family suggestions for support
Make sure family know what to expect
Psychologist for parent, child, family – coping strategies
Understanding, thoroughness and assurance from primary care team
Information for the extended family, friends and community – length of treatment, concerns re infection, understanding re scanxiety and continued monitoring
Practical support – meals, cleaning, financial, respite
Schooling – friends, catching up, behavioural difficulties
Ongoing contact with other oncology parents and the tertiary hospital

19. Recommendations
Resources are developed and placed online for families, regional health providers and the community on supporting families returning home following their child’s cancer treatment.
Paediatric oncology tertiary centres implement a standard procedure of ensuring every family has access to psychological care (locally or via telehealth) when returning home following their child’s cancer treatment.