the psychology of transition dr janie donnan (principal clinical psychologist) royal hospital for...
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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?
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