The Psychology of Transition

Dr Janie Donnan (Principal Clinical Psychologist)Royal Hospital for Sick Children, Glasgow

WoSPGHAN Annual Education Day 21/04/11

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

Challenges of Chronic Illness

Hospital visits

Potential fear of losingChild/sibling

Routine/Diet-whole family

change

Medication regime

Building relationshipswith hospital staff

Cope with medical procedures

Dealing with diagnosis

Coping withtreatment regime

Worries aboutProcedures / future

Coping with changein body image,

Impact on Quality of life

What challenges do children/young peoplewith a chronic illness face?

Adjustment toDisease /

Understanding condition

Maintaining friendships/ Interests/ “normal”

daily life (nursery/school)Restricted independence / restricted activities

Feeling different from friends

Adjustment over time

Kubler-Ross (1969)

Key adolescent developmental stages

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

AUTONOMY

INDEPENDENCE

Specific Cognitive and Emotional Development ChallengesFormal Operational

Stage (Piaget)-more adult like

-Abstract thought-Work things out in

head-egocentric

Future thinking and greaterKnowledge of illness=

assess possible outcomes reHealth/life

Expectancycareer/family etc

Can increase Anxiety/

Depression/Self

Consciousness

NeedCommunication

And Empathy

But also increased Problem solving

skills

Specific Social Development Challenges

“Chaotic” lifestyleLess routine

More spontaneityDifferent bedtimes/diet

IncreasedDesire for

Peer acceptance

Physical developmentAnd sexualMaturation

Development of personal identity and self esteem

Impact of CIAnd mgmt on

Sexual identity/Body Image

EstablishingIndependence / autonomyDifficult if not managing

Treatment well

Risk takingbehaviours

“bulletproof”

But also valuableSocial support

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

A child unit is:

Friendly

Supportive Holistic

Welcoming

Colourful

Childish

An adult unit is:

Grubby

Depressing

Confusing

Vast

Scary

“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)

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

(Patient in paediatrics)

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)

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…

SOLUTIONS

?

Structured co-ordinated programme of

transitional care [Shaw et al 07]

Development of transition models…which can be trialled and evaluated…to inform how resources need to be distributed [Steinbeck et al 07]

…understanding the impact of adolescent development on

the transition process [Kaufman 06]

Collaborative efforts by paediatric

and adult teams[Freyer et al 06]

Cultural shift in NHS staff attitudes and

training [Viner 08]

…strategies need to be informal, flexible, highlyindividualized and prepare adolescents steadily

for adult services [Soanes & Timmons 04]

“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)

Thank you for listening!

Any questions or comments?