Presentation on theme: "The Psychology of Transition"— Presentation transcript:
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 – adolescenceReluctance of health care teamIndividual's readiness for change – physical & emotional immaturityParents anxietiesA positive move for many
3 Challenges of Chronic Illness Medication regimeDealing withdiagnosisRoutine/Diet-whole familychangeHospital visitsBuilding relationshipswith hospital staffCope with medicalproceduresPotential fear of losingChild/sibling
4 What challenges do children/young people with a chronic illness face? Impact onQuality of lifeAdjustment toDisease /UnderstandingconditionCoping withtreatment regimeCoping with changein body image,Maintaining friendships/Interests/ “normal”daily life (nursery/school)Frustration with treatmentDisrupted sleep patternResistant to medsRestricted independence /restricted activitiesWorries aboutProcedures / futureFeeling different from friends
5 Adjustment over time Kubler-Ross (1969) Fear/anxiety – coping with demands of treatmentAnger – why me / why my child / why my brother/sisterGuilt – my fault??Loss – previously healthy child / “normal” family life – potentially large changes to routine etc..
6 Key adolescent developmental stages UTONMYIDEPCCognitive and emotional developmentPhysical development and sexual maturationIncreased independence and autonomyIncreased identification with peersKey tasks of adolescence (Erikson, 1968; Newman, 1991)Group identity vs alienationIdentity vs role confusionFamily lifecycle (McCarter and Goldrick, 1989)Adjusting parent-child relationshipsAdjusting marital relationships↑strains ↓well-being
7 Specific Cognitive and Emotional Development Challenges Future thinking and greaterKnowledge of illness=assess possible outcomes reHealth/lifeExpectancycareer/family etcFormal OperationalStage (Piaget)-more adult like-Abstract thought-Work things out inhead-egocentricCan increaseAnxiety/Depression/SelfConsciousnessNeedCommunicationAndEmpathyImpact on cognitive development of chronic illness is not well understoodBut also increasedProblem solvingskills
8 Specific Social Development Challenges EstablishingIndependence / autonomyDifficult if not managingTreatment wellIncreasedDesire forPeer acceptance“Chaotic” lifestyleLess routineMore spontaneityDifferent bedtimes/diet“bulletproof”Development of personal identityand self esteemRisk takingbehavioursPhysical developmentAnd sexualMaturationBody 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 imageCI can impact on opportunities for social development – hospital admissions etc…Economic independence and plans for the futureDiscrepancy between physical development and social maturity can:Heighten issues relating to body imageImpact on self esteemResult in bullyingImpact of CIAnd mgmt onSexual identity/Body ImageBut also valuableSocial support
9 Research Study (English Hospital) Perceptions of child vs adult Interviews, focus groups or open-ended questionnaires15 paediatric patients (10 male; 5 female; mean age 17.8 years)Pre transfer to adult serviceAll covered:what is good/bad transitionwhen and how best to transitionwhen and how best to transferInterviews, 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……WelcomingChildish
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 itResearcher: 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 scaredTransition 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 goProfessionals need to respect thisDiscuss early to allow timeParent support groupsSupport (friendship) /supervision/confidentialityEducate parents e.g. about need for independencePoint of contact in adult centre for parent – at least initiallyParent buddiesTalking to YP about life expectancySibling supportFinancial issues including DLA, prescription charges etc…
16 ? SOLUTIONS programme of Cultural shift in NHS staff attitudes and Structured co-ordinatedprogramme oftransitional care [Shaw et al 07]Cultural shift in NHSstaff attitudes andtraining [Viner 08]SOLUTIONS?Development of transition models…whichcan be trialled and evaluated…to inform howresources need to be distributed [Steinbeck et al 07]Collaborativeefforts by paediatricand adult teams[Freyer et al 06]…understanding the impactof adolescent development onthe 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 SOLUTIONSWe 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, highlyindividualized and prepare adolescents steadilyfor 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?