T14 - Role of the Internet - Abby Parish.pps
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Transcript T14 - Role of the Internet - Abby Parish.pps
www.Can-The-InternetHelp-Our-Inpatients.com
THE ROLE OF THE INTERNET IN FACILITATING
COMMUNICATION IN THE DYING PHASE
Abby Parish
FP1 Doctor in Palliative Medicine, YBN, Bridgend
Communication difficulties for
patients...
Multiple medical and psychological
causes
Also being physically removed from
society when an inpatient
The Problem
Case: Patient D
57 y old male with locally advanced
rectal cancer
Acute admission in final weeks of life
Bed bound (pain, open tumour)
Discharge not possible
Business man - main concern was being
able to tie up his business so he could
provide for his family
Patient Management
Pain
control
Wound management
Supportive treatment
How
to help him tie up his business
affairs…..
Background
Internet
Increasingly a part of everyday life
Useful for a variety of purposes
Could be used by anyone regardless of
age
Internet usage
Patients use of the internet
Information gathering
Support
Socialisation/blogging
Purchasing aids
Therapeutic outlet
Palliative Care Inpatients
Some will never leave hospital
Others have relatives around the world
They may seek information
Others seek solace in strangers
Some want to tie up business affairs
Some may just want to buy a CD or a
pair of shoes
Survey
Aims
To look at the provision and use of the
internet for palliative care inpatients in
specialist palliative care units in Wales
Ultimately to find a solution for patient D
Method
Telephone survey of 17 Welsh inpatient
units
– Both adult & paediatric
– Both NHS and funded by charity
Results
5 units provide internet access
– All funded by charitable contributions
12 units had no internet provision
– In 3 units patients did access the internet
via mobile broadband and was self-funded
Results II
Managing business
affairs
Games
Contacting distant
Friends/relatives
How the
internet
was used
by patients
Email
Internet banking
Shopping
Blogging/social
networking
The Solution
Patient D
After information gathering across Wales, we
advised D to bring in his laptop and use
mobile internet
His business affairs were completed via the
internet plus telephone
In his final weeks of life, he enjoyed peace of
mind and quality time with his family
Summary
Benefits
Allows patient to socialise on their own
terms
Information gathering
Facilitates process of tying up affairs
Allows communication with friends and
families who are away
Promotes patient well-being
Disadvantages
Not everyone can use the internet
Not all patients will be well enough to
use the internet
Confidentiality (e.g. communal laptops)
Accessing inaccurate information online
Mobile broadband may
not be available in all areas
Suggestions
Internet access is easy to provide
– Broadband & wireless router (<£20/month)
– Patients own laptop & mobile internet (£0
to hospice)
– IT security may be an issue within a trust
Suggestions II
What to do with this information
– Bring it up at a national conference for
discussion!
Next step…
– Qualitative study
Finally….
Internet is an increasingly important form of
communication in everyday life
Handy way for patients to communicate with
loved ones and tie up outstanding affairs
Allows us to ‘offers a support system to help
patients live as actively as possible until
death’ (WHO)
References
Bach, L.A. Blogging during terminal care: Communication, color schemes and
creating a community, Journal of Clinical Oncology, 2008: 26, p. 4504-4506
Farmer A.D., Bruckner Holt, C.E.M., Cook, M.J., & Hearing, S.D. Social
networking sites: a novel portal for communication, Postgraduate Medical
Journal, 2009: 85; p. 455-459
McKay, B. Internet resources for hospice and bereavement, Journal of Pain &
Palliative Care Pharmacotherapy, 2009: 23; p.141-144
Tan, L. Psychotherapy 2.0: MySpace blogging as self-therapy, American
Journal of Psychotherapy, 2008: 62; p. 143-163
Weiss, J.B. & Lorenzi, N.M. Online communication and Support for Cancer
patients: A Relationship-centric Design Framework, AMIA annual symposium of
procedures, 2005:799-803
Weiss,J.B. & Lorenzi, N.M. Challenges of social networking technologies for
cancer care and social support, AMIA annual symposium of procedures, 2007:
1151
Willis, L., Demiris, G., & Oliver, D.P. Internet use by hospice families and
providers: a review, Journal of medical systems: 31; p. 97-101
Thank you
Any questions or discussion points?