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CEN Education day 24 Feb 2010

CEN Education day 24 Feb 2010. How do parents and carers experience decision making? Alan Smart, family carer & Development worker, PAMIS. Jamie. Outline. Introducing Jamie Pre PEG feeding How family was involved in decision making process changing from oral to peg feeding

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CEN Education day 24 Feb 2010

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  1. CEN Education day 24 Feb 2010 How do parents and carers experience decision making? Alan Smart, family carer & Development worker, PAMIS

  2. Jamie

  3. Outline • 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?

  4. Introducing Jamie, age 9 • Quadriplegic dystonic cerebral palsy • Profound learning disability • Visual impairment • Musculoskeletal problems • PEG (and fundo. Jamie, age 2½)

  5. New Parents • Terrible time • Lack of support networks • Sleep deprivation • Bombardment of appointments • Introduced into specialised services • Constant demand of Jamie’s care needs • Difficult to take everything on board

  6. Pre PEG • Constant sickness • Weight loss • Ph studies, scopes, tests, medication • Chronic Reflux • Dysphagia • Feeding problems • Professional input . . . …Dietary Services, Speech and Language Therapy and Occupational Therapy

  7. Family constantly busy Stressed and tired Persevering with oral feeding Increasing demands of care role Increased expectations for Jamie to have operation done Rosy picture of PEG solves all problems!? Making the decision! Pressured to have PEG?

  8. 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

  9. 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”

  10. The end of oral feeding • Stopped persevering! • Agreed for the PEG to be fitted • Oral feeding gradually slowed to a halt

  11. PEG feeding – post PEG • Jamie’s ongoing problems • Still dealing with sickness • Jamie began to have choking episodes requiring emergency treatment • Severe trapped wind/bloating • Constipation • Ongoing investigations… • Continuing intervention • Jamie’s siblings born

  12. Jamie’s sister and brother

  13. A WAY FORWARD • First glimpse of hope • Meeting with PAMIS Co-ordinator • Meeting other families • Sharing knowledge and experiences • Training and education

  14. What can be improved? • Valuing and tapping into the resource and expertise of family carers • Giving parents access to evidence based info. on the proposed procedure • Having other parents to talk with • Counselling services/life coaching • Quality training for all frontline carers • Advocacy being offered • Having basic assessments carried out: carers needs, and single shared assessment • Having care co-ordinators to help with the management of the Jamie’s ongoing care needs • Professionals to communicate important information to family carers in writing as well as verbally

  15. Long term improvement? • Carer involvement must be taken to the next stage… • …Joint Leadership between family carers and professionals

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