CEN Education day 24 Feb 2010

How do parents and carers experience decision making?

Alan Smart, family carer &Development worker, PAMIS

Jamie

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

Introducing Jamie, age 9

Quadriplegic dystonic cerebral palsy

Profound learning disability

Visual impairment

Musculoskeletal problems

PEG (and fundo. Jamie, age 2½)

New Parents

Terrible timeLack of support networksSleep deprivationBombardment of appointmentsIntroduced into specialised servicesConstant demand of Jamie’s care

needsDifficult to take everything on board

Pre PEG

Constant sicknessWeight lossPh studies, scopes, tests, medicationChronic Reflux Dysphagia Feeding problemsProfessional input . . .

…Dietary Services, Speech and Language Therapy and Occupational Therapy

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!?

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

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”

The end of oral feeding

Stopped persevering!

Agreed for the PEG to be fitted

Oral feeding gradually slowed to a halt

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

Jamie’s sister and brother

First glimpse of hopeMeeting with PAMIS Co-ordinatorMeeting other familiesSharing knowledge and experiencesTraining and education

A WAY FORWARD

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

Long term improvement?

Carer involvement must be taken to the next stage…

…Joint Leadership between family carers and professionals