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Reporting of health problems and pain by adults with an intellectual disability and by their carers
- Authors:
- TURK Vicky, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 25(2), March 2012, pp.155-165.
- Publisher:
- Wiley
Recent years have seen increased efforts to identify and overcome the barriers that people with intellectual disability can experience when accessing health care. Information about the health of people with ID is usually obtained from professionals and carers. This study looked at information provided by people with ID themselves and the difference between self-reports and carer’s information. The data analysed was baseline health information for 98 participants with ID taking part in a RCT and living in south east London. Less than three quarters of participants said they had someone to talk to about their health (68/93). Pain was reported by 67% (66/98) with 18% (17/95) saying they did not tell anyone when in pain, and 27% (26/97) they did not take pain relief medication. Matched carer data for 59 participants revealed a similar number of health problems to those reported by participants when prompted with specific problems. Participants reported more headaches and allergies, but fewer weight problems than their carers. Concordance was poor for many problems. The authors conclude that adults with ID can report health problems, although many chose not to. The information provided on pain and mental health suggests that their some of their needs may be going unrecognised.
An evaluation of the implementation of hand held health records with adults with learning disabilities: a cluster randomized controlled trial
- Authors:
- TURK Vicky, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 23(2), March 2010, pp.100-111.
- Publisher:
- Wiley
Adults with learning disabilities (AWLD) have high health needs, yet have little involvement with their health care. This research assessed the impact of implementing a hand held health record, called the Personal Health profile (PHP), on GP consultations and on the health knowledge of AWLD and/or their carers. Forty GP practices were randomised to the PHP implementation, including a control group. Two hundred and one AWLD were interviewed at baseline and 163 followed up after 12 months intervention. Findings showed that annual consultation rates in the intervention and control groups at baseline were low (2.3 and 2.6 visits respectively), with a slightly greater increase occurring over the year in the intervention group averaging 0.6 visits per year compared with the control group. AWLD in PHP group reported more health problems at follow-up. AWLD liked their PHP (92%) but only 63% AWLD and 55% carers reported PHP usage. In conclusion, the authors found no significant outcomes were achieved by the intervention.
Resource pack for carers of adults with Down's Syndrome and dementia
- Authors:
- DODD Karen, TURK Vicky, CHRISTMAS Michelle
- Publisher:
- British Institute of Learning Disabilities
- Publication year:
- 2002
- Pagination:
- 146p.
- Place of publication:
- Kidderminster
People with Down's syndrome are far more likely to develop dementia than the general population, and at a younger age - the average age of dementia onset is just 52 years, with death likely to occur within just six years . This new resource for family carers, staff and other professionals supporting people with Down syndrome, to help them with practical day to day issues, including: supporting a person to maintain skills and independence as long as possible; treating treatable conditions; understanding and responding appropriately to changes in behaviour, at early, middle and late stages of dementia; providing emotional reassurance for carers; improving the confidence of carers to look after individuals; iIdentifying local supports and resources; and being open to the problems that may arise, and help with tips and solutions to cope.