Transition or transfer?Transition or transfer?Meeting the needs of young Meeting the needs of young

peoplepeople

Sue DolbySue DolbyConsultant Clinical PsychologistConsultant Clinical Psychologist

Bristol Children’s HospitalBristol Children’s Hospital

Definitions of transitionDefinitions of transition

The purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child – centered to adult orientated healthcare systems.

Society for Adolescent Medicine, 1993.

Transition planningTransition planning

• Phase 1: Preparation Phase 1: Preparation

• Phase 2: Active transferPhase 2: Active transfer

• Phase 3 :Integration into adult healthcarePhase 3 :Integration into adult healthcare

Bennett et al. (2005) MJA,182,8, 373 – 74.Bennett et al. (2005) MJA,182,8, 373 – 74.

YEAR 9: INTRODUCTION TO TRANSITON PROGRAMME-Aims and pathway outline

-Identify key worker (SW/Clin Psychol/Comm nurse)- Initial personal plan

YEAR 10 : REVIEW-Increase self management , knowledge,

-Assess social, health, education & developmental needs-Personal plan

YEAR 11 : REVIEW As year 10 + discussion of transfer timing at 16+

Clinic reviews& Psycho-

Social meetings

YEAR 12 &13-Increase self management

-Assess needs as before-Separation/independence

6/12 reviews re transfer

PREPARATION FOR TRANSFER-Strengths/needs /risks social, emotional, vocational, health

-Information on adult Unit-Introductory visit & links to staff

-Joint complex care meeting –sig. needs (YP invited)Transfer report written with YP

ENTER TRANSITION CLINIC PROCESS IN ADULTSJoint Paed /Adult Nephrologists process varies across

region

EVALUATION OF PROCESS & JOINT REVIEW OF

PROGRAMME –Patient experience/staff experience

IN LIAISON WITH:School nurses

PSCHE curriculumConnexions

Locality SS DisabilityHealth Promotion

etc

BRISTOL CHILDREN’S HOSPITAL RENAL TRANSITION PATHWAY 2006

Annual transition programme Annual transition programme interview- paediatric interview- paediatric preparationpreparation• What do you know already about the programme– any questions What do you know already about the programme– any questions

/particular areas you want to discuss?/particular areas you want to discuss?• Social, educational and vocational – now /near futureSocial, educational and vocational – now /near future• Peer relationships and influences Peer relationships and influences • Family relationships – individual issues re independence, individuation Family relationships – individual issues re independence, individuation

etcetc• Becoming a young person …. Normal developmental trajectories – your Becoming a young person …. Normal developmental trajectories – your

experience ( psychological & biological)experience ( psychological & biological)• Looking after yourself in relation to renal condition, transplant kidney Looking after yourself in relation to renal condition, transplant kidney

& choosing health (specific medical concordance & & choosing health (specific medical concordance & sex/drugs/drinking/smoking/ obesity/ mental health) sex/drugs/drinking/smoking/ obesity/ mental health)

• Managing own condition ( medical/ Renal Patient view/ clinic)Managing own condition ( medical/ Renal Patient view/ clinic)• Information on adult services – expectations = realityInformation on adult services – expectations = reality• What do we need to work on with you over the next year?What do we need to work on with you over the next year?• What do you want other people to be aware of / support you with over What do you want other people to be aware of / support you with over

the next year?the next year?• Final year plan – when to go, what the process will be & links to adultsFinal year plan – when to go, what the process will be & links to adults

POTENTIAL BARRIERS TO SUCCESSFUL POTENTIAL BARRIERS TO SUCCESSFUL TRANSITIONTRANSITION

• Minimising transition to transfer – manageable Minimising transition to transfer – manageable processprocess

• Paediatric anxieties about quality of adult Paediatric anxieties about quality of adult provisionprovision

• Attachment to patients – ‘parenting’ by the Attachment to patients – ‘parenting’ by the healthcare team / parenting by carershealthcare team / parenting by carers

• Lack of preparation for expectations/reality of Lack of preparation for expectations/reality of adult servicesadult services

• Adult provider concerns about managing young Adult provider concerns about managing young people people

• Lack of preparation for ‘independence’ and self Lack of preparation for ‘independence’ and self care that is developmentally appropriate- care that is developmentally appropriate- challenge for both serviceschallenge for both services

Based on Fox, MA. (2002). Physicians as barriers to successful Based on Fox, MA. (2002). Physicians as barriers to successful transitional care. Int. J. Adolesc. Med. Health. 14, (1), 3-7.transitional care. Int. J. Adolesc. Med. Health. 14, (1), 3-7.

“multi-faceted, active process that attends to the medical, psychosocial and educational/vocational needs of adolescents as they move from child-orientated to adult-orientated lifestyles and systems”.

White, PH. Rheum Dis Clin N Am 1997;23:697-707 Quoted by Donal O’Donoghue ww.nephronline.org

Definition of transition (2)

Integrating transitionIntegrating transition• Developing self Developing self

management management knowledge & skills knowledge & skills (making own choices)(making own choices)

• Integrating ‘Choosing Integrating ‘Choosing Health’ ( Obesity, Health’ ( Obesity, smoking, drinking, smoking, drinking, mental health, sexual mental health, sexual health)health)

• Integrating Every Child Integrating Every Child Matters (Be Healthy, Matters (Be Healthy, Stay Safe, Enjoy & Stay Safe, Enjoy & Achieve, Make a Achieve, Make a Positive Contribution & Positive Contribution & Achieve Economic Achieve Economic Wellbeing)Wellbeing)

Integrating transitionIntegrating transition• Information about Information about

paediatric /young paediatric /young adult/ adult systems adult/ adult systems

• Informed choice Informed choice about where to be about where to be treated treated

• Supported transition Supported transition between teams / sitesbetween teams / sites

• Professionals who Professionals who consider the impact consider the impact of cancer on normal of cancer on normal developmental developmental trajectoriestrajectories

Developmental challenges in Developmental challenges in adolescence & young adulthoodadolescence & young adulthood

• Achieving biological and sexual maturationAchieving biological and sexual maturation• Developing cognitive capacity to utilise Developing cognitive capacity to utilise

abstract thinking rather than concrete abstract thinking rather than concrete thinkingthinking

• Develop personal identityDevelop personal identity• Develop intimate relationships with peers ( Develop intimate relationships with peers (

friendships as well as sexual with friendships as well as sexual with appropriate partner)appropriate partner)

• Establish independence & autonomy in the Establish independence & autonomy in the context of their individual socio-cultural context of their individual socio-cultural environment environment

Based on Christie,D. & Viner, R. (2005) Based on Christie,D. & Viner, R. (2005) BMJ  330:301-304BMJ  330:301-304   

NEEDS OF YOUNG PEOPLE ?NEEDS OF YOUNG PEOPLE ?

• Information ( about services , condition, Information ( about services , condition, treatments, life with / after cancer, etc) - treatments, life with / after cancer, etc) - multimediamultimedia

• Peer support and information Peer support and information

• Continuity of care and staffContinuity of care and staff

• Follow up as a survivor – long term effects / Follow up as a survivor – long term effects / information about childhood treatmentinformation about childhood treatment

• Staff who understand the impact of cancer Staff who understand the impact of cancer in young adulthoodin young adulthood

• ‘‘Treat us as individuals … we’re not all the Treat us as individuals … we’re not all the same just because we’re the same age’same just because we’re the same age’

X Survivor

Bio-psycho-social-vocational development

X Survivor

Beliefs, expectations, values, knowledge, understanding, perceptions of risk, goals,

priorities etc etc Understood & shared,

Beliefs, expectations, values, knowledge, understanding, perceptions of risk, goals,

priorities etc etc Understood & shared,

Phase 1: Preparation Phase 1: Preparation

Phase 2: Active transferPhase 2: Active transfer

Phase 3 :IntegrationPhase 3 :Integration

Adolescence

Adulthood

Individualised, developmentally appropriate approach (reflecting changes over time)

Integrate an understanding of the developmental challenges of thisperiod in a young person’s life – what does it mean for this young person at this point in their journey(bio-psycho-social-vocational)

Identity & independence

Peers & parents

Informed choices – choices about Information (what, when, how)

jimmyteenstv.com provides films and animations made by young cancer patients to give their views on living and coping with cancer.

Films are provided by various cancer wards around the UK.

https://www.teenagecancertrust.org/

http://www.clicsargent.org.uk

http://www.jimmyteenstv.com/2008/04/tya-session-5/

Transition: Getting it right Transition: Getting it right

DoH DVDDoH DVD

www.dh.gov.uk/PolicyAndGuidance/HealthAndwww.dh.gov.uk/PolicyAndGuidance/HealthAndSocialcareTopics/ChildrenServices/Transitions/SocialcareTopics/ChildrenServices/Transitions/fs/enfs/en