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CEN Education day 24 Feb 2010
How do parents and carers experience decision making?
Alan Smart, family carer &Development worker, PAMIS
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Jamie
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Introducing Jamie
Pre PEG feeding
How family was involved in decision making process changing from oral to peg feeding
Professional input and support available
What can be improved?
Outline
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Introducing Jamie, age 9
Quadriplegic dystonic cerebral palsy
Profound learning disability
Visual impairment
Musculoskeletal problems
PEG (and fundo. Jamie, age 2½)
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New Parents
Terrible timeLack of support networksSleep deprivationBombardment of appointmentsIntroduced into specialised servicesConstant demand of Jamie’s care
needsDifficult to take everything on board
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Pre PEG
Constant sicknessWeight lossPh studies, scopes, tests, medicationChronic Reflux Dysphagia Feeding problemsProfessional input . . .
…Dietary Services, Speech and Language Therapy and Occupational Therapy
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Click to edit the outline text format
Second Outline Level
Third Outline LevelFourth Outline Level Fifth Outline Level
Sixth Outline Level
Seventh Outline Level
Eighth Outline Level
Ninth Outline LevelClick to edit Master text styles Second level
Third level Fourth level
Fifth level
Making the decision! Pressured to have PEG?
Family constantly busyStressed and tiredPersevering with oral feeding Increasing demands of care role Increased expectations for Jamie
to have operation doneRosy picture of PEG solves all
problems!?
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Mum and Daddecisions, decisions !
Jamie’s mum – persevering with oral feeds
Jamie's dad – inevitable for PEG? gave in
Eventually Jamie had to have a PEG fitted as he was just getting too thin
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How parent-carers feel
“Frightens the life out of me … the biggest fear in my life”
“A huge challenge”“Taking away the last of their
abilities”“They can’t be bothered feeding…
bypassing and mechanising caregiving by hooking people up to a machine”
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The end of oral feeding
Stopped persevering!
Agreed for the PEG to be fitted
Oral feeding gradually slowed to a halt
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PEG feeding – post PEG
Jamie’s ongoing problemsStill dealing with sicknessJamie began to have choking episodes
requiring emergency treatmentSevere trapped wind/bloatingConstipationOngoing investigations…Continuing interventionJamie’s siblings born
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Jamie’s sister and brother
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First glimpse of hopeMeeting with PAMIS Co-ordinatorMeeting other familiesSharing knowledge and experiencesTraining and education
A WAY FORWARD
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What can be improved?Valuing and tapping into the resource and expertise
of family carersGiving parents access to evidence based info. on the
proposed procedure Having other parents to talk withCounselling services/life coaching Quality training for all frontline carersAdvocacy being offeredHaving basic assessments carried out: carers needs,
and single shared assessmentHaving care co-ordinators to help with the
management of the Jamie’s ongoing care needsProfessionals to communicate important information
to family carers in writing as well as verbally
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Long term improvement?
Carer involvement must be taken to the next stage…
…Joint Leadership between family carers and professionals