1. The Psychology of Transition
Dr Janie Donnan (Principal Clinical Psychologist) Royal Hospital for Sick Children, Glasgow WoSPGHAN Annual Education Day 21/04/11

2. Transition
“a purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centred to adult-orientated health care systems” (DoH, 2006)
Transition generally happens during one of the most vulnerable periods in a child’s life – adolescence
Reluctance of health care team
Individual's readiness for change – physical & emotional immaturity
Parents anxieties
A positive move for many

3. Challenges of Chronic Illness
Medication regime
Dealing with
diagnosis
Routine/Diet
-whole family
change
Hospital visits
Building relationships
with hospital staff
Cope with medical
procedures
Potential fear of losing
Child/sibling

4. What challenges do children/young people with a chronic illness face?
Impact on
Quality of life
Adjustment to
Disease /
Understanding
condition
Coping with
treatment regime
Coping with change
in body image,
Maintaining friendships/
Interests/ “normal”
daily life (nursery/school)
Frustration with treatment
Disrupted sleep pattern
Resistant to meds
Restricted independence /
restricted activities
Worries about
Procedures / future
Feeling different from friends

5. Adjustment over time Kubler-Ross (1969)
Fear/anxiety – coping with demands of treatment
Anger – why me / why my child / why my brother/sister
Guilt – my fault??
Loss – previously healthy child / “normal” family life – potentially large changes to routine etc..

6. Key adolescent developmental stagesU T O N M Y I D E P C
Cognitive and emotional development
Physical development and sexual maturation
Increased independence and autonomy
Increased identification with peers
Key tasks of adolescence (Erikson, 1968; Newman, 1991)
Group identity vs alienation
Identity vs role confusion
Family lifecycle (McCarter and Goldrick, 1989)
Adjusting parent-child relationships
Adjusting marital relationships
↑strains ↓well-being

7. Specific Cognitive and Emotional Development Challenges
Future thinking and greater
Knowledge of illness=
assess possible outcomes re
Health/life
Expectancy
career/family etc
Formal Operational
Stage (Piaget)
-more adult like
-Abstract thought
-Work things out in
head
-egocentric
Can increase
Anxiety/
Depression/
Self
Consciousness
Need
Communication
And
Empathy
Impact on cognitive development of chronic illness is not well understood
But also increased
Problem solving
skills

8. Specific Social Development Challenges
Establishing
Independence / autonomy
Difficult if not managing
Treatment well
Increased
Desire for
Peer acceptance
“Chaotic” lifestyle
Less routine
More spontaneity
Different bedtimes/diet
“bulletproof”
Development of personal identity
and self esteem
Risk taking
behaviours
Physical development
And sexual
Maturation
Body image – puberty may be delayed or may be growth issues, body image issues e.g due to side effects of medication or scarring etc…
Sexual identity affected by body image
CI can impact on opportunities for social development – hospital admissions etc…
Economic independence and plans for the future
Discrepancy between physical development and social maturity can:
Heighten issues relating to body image
Impact on self esteem
Result in bullying
Impact of CI
And mgmt on
Sexual identity/
Body Image
But also valuable
Social support

9. Research Study (English Hospital) Perceptions of child vs adult
Interviews, focus groups or open-ended questionnaires
15 paediatric patients (10 male; 5 female; mean age 17.8 years)
Pre transfer to adult service
All covered:
what is good/bad transition
when and how best to transition
when and how best to transfer
Interviews, focus groups or open-ended questionnaires were conducted with participants from paediatrics.
All methods of data collection covered …….
These were then: Transcribed verbatim, coded and analysed qualitatively for themes.
Also carers (15) and staff (17) but not reported those results

10. A child unit is: Holistic Supportive Friendly Colourful Welcoming
Participants described the children’s unit as……
Welcoming
Childish

11. An adult unit is: Depressing Vast Grubby Scary Confusing
And they described the adult unit as…….
This is the view of adults from a paediatric perspective and I’m sure is not how staff, patients and carers from the adult unit would describe it but we will have to wait and see. Still there are problems associated with sending young people from child to adult services with such negative views of where they are going.

12. “It’s a little more friendly over there (paediatric transplant clinic), where you can walk in and everyone knows who you are. Here you’ll recognise them but they will be like they won’t know you from Adam. So it’s a big shock when you first start coming”
(paediatric patient)
So adolescence is a difficult time esp for those with a chronic illness and they are not only asked to take more responsibility for their own health care but also their care is then moved to adult services. For different specialities this is currently done with varying degrees of success.
It can be an anxious time for all family members and sadly when it doesn’t go well can lead to negative health outcomes including non attendance at clinics, poor adherence to treatment amongst other things. Nearly all children whether they are positive about transition or not would probably agree with some of the statement above.

13. Researcher: What do you think is good about that?
ID16: Probably moving from children’s to adult’s, is probably best bit about it
Researcher: What do you think is good about that?
ID16: Cause you’re not a kid no more
(Patient in paediatrics)
ID18: Mmm, I think I’m ready to move to adult side but I’m scared
Transition can be viewed as a positive process that some young people reported they were ready for…….

14. Supporting the move: Parent/carer perspective
“I think it’s also hard for us as parents to stand back and say ‘well I’m not coming in’ because you really want to know what’s going on. You know they are not going to say everything you want them to say”
Shaw, K.L. (2004)
An example of how stepping back and letting your child take responsibility for their medical care at transition is very difficult for parents.

15. Supporting the move: Parent/carer perspective
Difficult for parents to let go
Professionals need to respect this
Discuss early to allow time
Parent support groups
Support (friendship) /supervision/confidentiality
Educate parents e.g. about need for independence
Point of contact in adult centre for parent – at least initially
Parent buddies
Talking to YP about life expectancy
Sibling support
Financial issues including DLA, prescription charges etc…

16. ? SOLUTIONS programme of Cultural shift in NHS staff attitudes and
Structured co-ordinated
programme of
transitional care [Shaw et al 07]
Cultural shift in NHS
staff attitudes and
training [Viner 08]
SOLUTIONS ?
Development of transition models…which
can be trialled and evaluated…to inform how
resources need to be distributed [Steinbeck et al 07]
Collaborative
efforts by paediatric
and adult teams
[Freyer et al 06]
…understanding the impact
of adolescent development on
the transition process
[Kaufman 06]
So what are some of the solutions that have been suggested to date to try and make transition a success? From looking through the literature, it would seem that lots of solutions have been offered.
SHOW SOLUTIONS
We need to familiarise ourselves with the literature that is out there and start problem solving in our own departments. Some have been more pro-active than others in getting involved and taking action.
…strategies need to be informal, flexible, highly
individualized and prepare adolescents steadily
for adult services [Soanes & Timmons 04]

17. “Adolescence is a time of many transitions; physiological, hormonal, psychological and environmental. In considering the type of service that is provided for adolescents, attention needs to be paid to all of these factors, as well as the interplay between them.” (Eiser, 1995)
Can be a reluctance of teams to transfer patients they have had in their care since birth esp. those who have traditional childhood disease they feel adult colleagues may not have expertise in.
By nature of their illness, some patients may be physically immature but they may also be emotionally immature and socially isolated lacking the social support or emotional resources to enable them to deal effectively with any kind of change.
As already mentioned we must not forget how difficult transition can be for parents.
Many children welcome the move to adult clinics and the opportunities to discuss issues of sexuality or drug-taking with the doctor alone.

18. Thank you for listening!
Any questions or comments?