Tuesday, April 3, 2012

Tutorial six - The internet and online communities

For this tutorial I will find 3 communities that relate to people who have dementia or alzehimers




"Alzheimers New Zealand is a support and advocacy organisation for people with dementia, their carers, family, whanau and community". This site is interactive as you are able to ask questions about dementia, scroll around the whole website and learn about dementia and share your own story, poem or blog about living with dementia or how you are personally affected by dementia. People can contribute by getting in touch with Alzheimers New Zealand. You are able to contribute financially or volunteer your own time to help out.

"Age Concern helps serve the needs of older people by offering nationally contracted services, education, resources and national leadership". This site is less interactive then the first site, there is no FAQ's section however you are able to email if you have a question that is not answered. Mostly this website is just information. However you are able to contribute, by emailing or ringing the number on the website. You can donate financially, volunteer or help with research.

"Carers New Zealand is now a national registered charity which provides information, advice, learning and support for families with health and disability needs". This site is more interactive then Age Concern but less interactive with Alzheimers New Zealand. You can listen to the radio on this website, you can read information, and look for carer communities. People are able to contribute by emailing or ringing the number on the website. Carers New Zealand asks for financial donations to help keep the website running, however you can join the carers network for $25 per year.

People choose to contribute one way or another to each of these communities because they want to help. Most of the people who visit the 3 websites I posted have probably has had personal experience with dementia, and knows the pain and emotional strain that it takes on the family and everyone around them. If they donate, they feel like they are doing some good, prehaps being able to save another family the heartbreak and strain of what they have been through. Maybe that $20 they donate will help another family get the information and help that the first family never got. Guilt would be another reason why someone would donate, guilt for not being their when someone they knew had dementia, or being to busy to visit them, or guilt for putting them in a rest home. Some of the reasons will make them feel that if they contribute they will have done some good, after prehaps making a bad decision and regretting it. People who choose to contribute will gain recognition, a boost in pride, self esteem and confidence. The information that is shared on the pages is reciprocal, everyone can read the same information and no information is withheld.

The chosen sites address occupational deprivation and occupational disruption.

"Occupational disruption is a temporary ability to engage in occupations due to life events, environmental changes or acute injury or illness" (Molineux, 2004).

"Occupational deprivation is the deprivation of occupational choice and diversity due to circumstances beyond the control of the individual" (Molineux, 2004).

The websites I posted are aimed at trying to help people cope with the change in their life that has occurred since being diagnosed with dementia. Dementia would be both occupational disruption due to the fact it affects the persons life due to illness, dementia starts off very temporary so at first does not affect the person much, and they are able to continue their normal actitivites, however dementia over time gradually worsens and then falls into the catergory of occupational deprivation as dementia takes over the persons life and occupations and there is nothing the person can do, it is beyond the control of the individual. There is no cure for dementia either so they have no say in what will happen. These websites are trying to bring information regarding dementia to the people who suffer from it, so they know what will happen, and what can be done about it (medicines, exercises) and things that prevent dementia from worsening (exercise, medicine, puzzles). The websites also state true facts, so people are aware that there occupations will be disrupted, and eventually they will be deprived of that occupation.

Potential ethical issues that may arise in this community are lack of identity and accountability, misuse, validity is questioned, and limited communication tools. As a online community there is a lack of idenity and accountability, this is due to the fact people can make up names and alias, you are not aware who you are talking to and can't hold website accountable for incorrect information. There is a huge potential for misuse as you can't stop people from posting incorrect information or misleading information. Everyone is able to read what you write and write their own comments towards what you have said. It is hard to monitor what is being written up on the sites and the moderators can be slow to take down rude or offensive material that is posted which may damage the websites reputation. There is no way you can tell if anything that is written on the websites is valid or even correct, it could be "mumbo jumbo", or it could be outdated, it is hard to tell true from false ! Being an online community there are limited communication tools for contacting others, mainly just being email, or phone.

The benefits of using online communities in relation to traditional geographical communites include having quick and fast access to information, being able to talk to other people with the same illness/injury and not having to leave your own home to do so. Whereas in relation to the traditional geographical communities you would have limited amount of people to talk to, and some of them may not have the same illness/injury, it is timely if you have to research information as you have to leave the home to do research. The limitations for online communities are lack of identity and accountability, potential for misuse, validity and limited communication tools.

Full Reference
Molineux, M. (2004). Occupation for occupational therapists. Oxford, UK : Blackwell Publishing Limited.

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