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 Reluctance of health care team Individual's readiness for change – physical & emotional immaturity Parents anxieties A positive move for many

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

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

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..

Key adolescent developmental stages U 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

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

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

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

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

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.

“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.

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…….

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.

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 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]

“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.

Thank you for listening! Any questions or comments?