The lived experience of an intellectual disability and diabetes mellitus

1
The lived experience of an intellectual
disability and diabetes mellitus

• Alexander Nesbitt

2
The aim reason for this exploratory research
study?

• My experience at Diabetes camps with children
• The minimal nature of any research in this field
• To find out.
• What is it like to live with an intellectual
  disability and diabetes

3
The size of the problem

• Incidence and Prevalence studies minimal
• Incidence probably under estimated
• Individuals living longer Face the same risk
  of cardiovascular disease, and diabetes, which
  confront the general adult population (Horowitz
  et al 2000 Special Olympics initiative)

4
What is known!
5
Syndromes/conditions Clearly linked with diabetes

• Down Syndrome
• Achondroplasia
• Potter's Syndrome
• Famial Microcephaly
• Prader Willi
• Klienfelter's
• Laurence-Moon-Biedl
• Congenital Rubella syndromes.
• Jancar et al (1986)

6
Prevalence of Diabetes in Down Syndrome

• Anwar (1998) 1.4-10 Prevalence
• Van Goor (1997) Prevalence 3x risk to children
  without Down Syndrome
• Earlier onset obesity (Kapell et al 1998)
• 6000-7000 individuals with Down Syndrome in
  Ireland (Down Syndrome Ireland 2006)
• Between 84 and 700 individuals with Down Syndrome
  and Diabetes Mellitus in Ireland!

7
Problems with researching this area
8
Common perceptions (inhibiting user involvement
in research)

• Diminished autonomy. (Silva 1995,15),
• Inability to make personal decisions (Weaver and
  Miller 1999)
• A vulnerable group'
• Unable to communicate in a conventional manner
• Often not taken seriously (Williams and Robinson
  2000),
• Unreliable' communicators (Baldwin 1996 and
  Davis et al 1997).

9
This study
10
The methodology

• Exploratory study
• Descriptive (Husserlian) Phenomenology
• Values all aspects important to the individual.
• Aim To produce a description from a group of
  diabetes and intellectual disability experts

11
Narrative Story Telling

• Everyone can tell a story
• Descriptive phenomenology Truth is what the
  individual says it is
• Reid and Button (1995) only other users

12
The research participants

• Selection Criteria
• Formal diagnosis of a learning disability
• Over 18
• Diabetes for 1 year
• Able to understand the purpose of the study
• Able to self consent
• Keen to be involved
• Represent both genders
• 26 potential individuals

13
Data Collection

• Involved interviews based upon the single
  question Tell me about living with diabetes
• Taped interviews
• 2 practice interviews
• Patient Information Sheet
• 3 versions
• One for client
• One for relatives
• One REBUS version

14
(No Transcript)
15
Raw Data findings

• Of the 26 potential participants
• 10 were interviewed

16
(No Transcript)
17
 
18
Analysis of Descriptions

• Following transcription
• Use of Atlas Ti software
• For coding and identification of emerging themes

19
Analysis
20
Validity reliability

• Van Kaam method (Van Kaam 1959,1966 Moustakas
  1994)
• Team of external experts (N2)
• One LD expert. One diabetes expert
• To read transcripts and agree / disagree codes
  and themes evolving.

21
Findings
22
Composite Groupings of Descriptions

• Diabetes was an intrusion into an individuals
  life.
• Feelings of loss relating to food intake,
  choice, and cost.
• Being in control of diabetes was gender linked.
• Clear descriptions of strong family history of
  diabetes
• Variable knowledge for key self-management

23
Diabetes was an intrusion into an individuals
life.

• Hypoglycaemia was generally coped with yet feared
  (7 responses)
• Lifestyle issues I wasnt happy because I
  cant have no beer (Male)
• I miss chocolate (4 Female responses)
• It is very difficult at times (Male).
• As soon as I put the phone down I just burst
  into tears (Female)

24
Feelings of Loss relating to food intake,
choice, and cost.

• I'm a bit cross. Because I can't have ice cream
  and cakes and that and I can see everybody else
  eating cakes and I want some. The only treat I
  can have is ice cream.
• ' Its the qualities of the sugar, and the
  quantity of the sugar in the food carton. How
  much sugar and the type of sugar present in fish
  and chips, breadcrumbs, beef burgers, chips and
  breaded fish. (Female) Some distress was present
  in the voice when this was described.
• Its expensive

25
Being in control of diabetes gender linked.

• I think my diabetes is getting worse instead
  of better unless its just me, the way I am with
  people. (Female)
• I don't want it for the rest of my life but
  don't suppose I have any choice (Female)
• Now I don't feel thirsty, I don't feel tired
  anymore. (Male)
• I try walking half-an-hour at a time, I walk into
  Aand I walk back every dayI dont know how
  far, (in reality 3 miles). (Male)
• I think it is better if we know ( 2 Male).

26
Clear descriptions of strong family history of
diabetes

• Eight of the participants described a relative(s)
  who had been diagnosed with diabetes. Not only
  describing but describing in detail.
• The potential for screening for diabetes in
  intellectually disabled individuals with a family
  history (UK National Service Framework Diabetes
  issue).

27
Variable knowledge for self-management

• Everyone treated by insulin or oral hypoglycaemic
  tablets was well prepared for hypos
• Self management appeared to work with good
  preparation for hypoglycaemia.
• But not so good with hyperglycaemia
• 5 Participants mentioned severe hypos leading to
  unconsciousness

28
Key other issues

• A request for useful and available information to
  help with the understanding of diabetes concepts
• 6 participants asked for information on
• The right foods
• And information on the causes of diabetes why
  have I got diabetes
• Made mention of tapes, videos leaflets.

29
What now?
I dont want diabetes as I get older.

• Narrative approach worked well as a data
  collection method
• While not all individuals with an intellectual
  disability would be able to provide informed
  consent
• All the individuals had a story to tell

30
Summary

• Incidence and prevalence increasing dramatically
• Very limited diabetes research in the
  intellectual disability field
• Significant problems affecting lifestyle
• Descriptions very similar to the rest of the
  population
• Care Recommendations
• Individuals with a learning disability can be
  excellent sources of information
• Need for educational material!!
• Screening at risk individuals

31
Glossary

• CVE Cerebrovascular event A Stroke
• HBA1c A test to measure the amount of glucose
  adhering to Haemoglobin. This test measures
  glucose levels over a three month period in
  terms
• Non diabetes HBA1c 5
• Tight control 6-7
• 8 too high

• Hypo abbreviation for low blood sugar signs-
  sweating pale confusion, anger fear
• MI Myocardial Infarction Heart Attack
• Macrovascular Affecting Large Blood Vessels
• Microvascular affecting small blood vessels
• PVD Peripheral Vascular Disease

32

• References
• Ackerman B. P. (1986) Referential and causal
  coherence in the story comprehension of children
  and adults. Journal of Experimental Child
  Psychology 41 336-366.
• Anwar A J Walker J D Frier B M (1998) Type 1
  Diabetes Mellitus and Downs syndrome
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  complications. Diabetes Medicine. February 15(2)
  160-163
• Baldwin M. (1996) Is Assessment Working? Policy
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• Cooper SA (2004) People with intellectual
  disabilities British Medical Journal 329414-415 
  
• Davis A Ellis K and Rummery K (1997) Access to
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• Diabetes Federation of Ireland (2006) The Way
  Forward 2006-2010. Dublin DFI
• Downs Syndrome association (2005) People with
  Downs Syndrome- Your Questions Answered
  available from http//www.downs-syndrome.org.uk/pd
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• Horwitz S M. Bonnie D. Kerker, M.P.H. Owens P
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  from www\MyData\2004 to 2005\DIABETES\Diabetes
  and LD\Conference LD 180305\The Health Status and
  Needs of Individuals with Mental Retardation.mht
  Special Olympics Inc. report
• .
• .

33

• References cont
• The Irish Diabetes Prevalence Working
  Group,(2006) Making Diabetes Count. Dublin The
  Institute of Public Health in Ireland
• Janicki M.P. Davidson Henderson, W.
  McCallion,P. Taets, P. Force D. Sulkes B,.
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• Reid D. K. Button L J. (1995) Anna's Story
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34

• References cont
• Swanson H L. (1992) Learning Disabilities and
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• University of Queensland (2006) Diabetes
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• Reference list