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What are the challenges specifically related to age and life stage? What are the implications for policy and practice? ,2Methods 1: Capturing the essence of the experience33Qualitative research Based on in depth interviews and observation Undertaken in two main sites  one specialist the other with no specialist facilities Some participants in both locations had experience of more than one setting of care $ZZ Methods 2 AData were derived from both formal and informal interviews and discussions Formally: the following participated: 12 in the specialist setting (4F, 8M) 11 in the non specialist setting (5F, 6M) 8 professionals - medical and non medical 6 young adults submitted narratives (3F, 3M) Accompanying relatives also contributed 8KZ&ZZA1Personal issues of importance to the participants22FAppearance Sexuality Fertility Loss of independence - including financial problems The disruption of their plans Losing touch with friends  social isolation Delays in diagnosis,Not unusual  rarer cancers were missed  but so was osteosarcoma Primary care professionals not looking for cancer in this age group Mothers made to feel neurotic and over anxious Delays exacerbated by young peoples lack of awareness or unwillingness to seek medical advice Setting of careHas a profound effect on the experience Deep distress resulted from some encounters on  inappropriate wards However, a minority of non specialist environments offered appropriate support Predominantly positive experiences on specialist wards 2-Experiences of non age specific care settings..Most distressing experiences came from being on an adult ward Though children's wards could also be found difficult The lack of understanding of the (changing and sometimes unpredictable) needs of the life stage contributed to the problems Difficulties in communicating with this age group Though positive experiences were possible  if rareVZVQuotesR From: Michelle (21 with an adrenal tumour) Steven (18 with Hodgkin s disease) Kelly (26 with lymphoma) Ruth (14 with Anaplastic large cell lymphoma) (age at diagnosis):ZZZComparative observationsSome participants had experienced both age specific and non specialist care settings as inpatients Some had visited the TCT ward coffee mornings and drew comparisons Quotes  From: Dawn (20 with acute lymphoblastic leukaemia) Adrian (18 with testicular cancer) Adrian s partner's mother (age at diagnosis) ,kThe specialist care settingExperiences very positive Reassuring and supportive Making friends on the ward, though the death of a fellow patient was distressing Quotes From: Nicola (19 with ovarian cancer) Ricky (15 with leukaemia) Donovan (16 with osteosarcoma) Nathan (17 with Hodgkin's disease) Charlotte (17 with a liver tumour) (age at diagnosis)HPPPPWhat makes a differenceZAge appropriate care  which encompasses a recognition of the issues raised by participants Appearance, sexuality, fertility, loss of independence, financial problems, the disruption of plans, losing touch with friends The ability and willingness of staff to engage with these difficult issues R\ZZZZPZ-What makes a differenceReducing feelings of isolation and difference Staying connected to youth culture The recognition of the young adult as an individual with an identity transcending their patient status The expertise that specialist staff have built up in all the areasWhat makes a differencehThe  atmosphere on a ward The informality; joking and banter: however, this is too simplistic and possibly misleading The informality is expertly underpinned by professionalism and boundaries that inspire confidence Exemplified by Morgan and Hubber (2004)  staff should wear uniforms 53  Conclusions Life stage has a significant impact on cancer in young adults The needs of the age group are specific but variable Allowances for this need to be built into supportive care To achieve an optimum setting of care may improve compliance and outcomes Z Conclusions FUniversal provision of specialist care may be some way off Evidence that appropriate care can be found outside the specialist environment is encouraging A model of best practice could be disseminated across a variety of settings But this is dependent on wide acceptance that age appropriate care is indeed the optimum care GG&  0` 33` Sf3f` 33g` f` www3PP` ZXdbmo` \ғ3y`Ӣ` 3f3ff` 3f3FKf` hk]wwwfܹ` ff>>\`Y{ff` R>&- {p_/̴>?" dd@,|?" dd@   " @ ` n?" dd@   @@``PR    @ ` ` p>> jb(    6޲ " `}  T Click to edit Master title style! !$  0 " `  RClick to edit Master text styles Second level Third level Fourth level Fifth level!     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