Abstract
Online cancer communities provide important emotional and social support to cancer patients and their family and friends due to the fact that users can consult with others throughout the world, both in real time and asynchronously, from the comfort of their home, in order to discuss all aspects associated with their cancer while maintaining a level of privacy by remaining anonymous.
Key Terms: Community/Communities. Network. Health Issues. Support. Emotional Support. Social Support. Online Support. Peer-to-Peer. Online. Cancer.
Patients with cancer and their families require support to assist them with their journey from diagnosis through to recovery or remission. Families and friends are unable to provide all the support necessary at this important time, the question asked in this paper is whether online cancer communities are able to provide a different type of support to supplement that available in face-to-face situations.
The family and friends of cancer patients do not always understand the stress that the patient is going through but a person who has been through the journey and survived can offer emotional support and provide insights into how to overcome their problems. The introduction of WEB 2.0 and its associated applications has allowed for “electronic peer to peer community venues” which has allowed cancer patients and their family and friends to come together with people from all around the globe to discuss their disease and offer each other “emotional support” (Eysenbach, Powell, Englesakis, Rizo, & Stern, 2004). Thus, online communities offer important support for cancer patients and their families by providing emotional and social support that is not available from the patient’s family or friends.
A virtual community is “an aggregation of individuals or business partners who interact around a shared interest, where the interaction is at least partially supported and/or mediated by technology and guided by some protocols or norms” (Porter, 2015). This type of online community helps users gain access to necessary information that can be used for problem solving and decision making (Porter, 2015). An online cancer support community is one such virtual community. This coming together of people from all over the world and from different backgrounds enables a collective intelligence where information and support, plus links to other resources are shared (Malone, Laubacher, & Dellarocas, 2010). Wellman & Gulia, (1999) state that in an online community environment users are quite happy to help strangers, which might not occur in real life situations as “gender, age, race, ethnicity, life-style and socioeconomic status can influence the situation.” They advise that information from a large group of people with weak ties, with differing backgrounds is more likely to be able to solve problems than a group of people who come from the same or similar backgrounds.
Another way online cancer support communities provide support to patients is by presenting ways to cope with stress. Wellman & Gulia (1999) are of the opinion that people using online communities are able to forge both weak and strong ties which can supplement those of family and friends. Namkoong, Shah & Gustafson (2017) suggest that beneficial family support is not enough, as the family of cancer patients, unless they have had the disease themselves do not understand the type of stress that the patient is under, but people who are suffering from the disease or who survived it are better able to understand what they are going through (p.1422). They also state that by becoming aware that others are suffering in the same way helps to promote both mental and physical health, as they realise they are not alone (Namkoong, Shah, & Gustafson, 2017).
In addition to realising that there are other people feeling the same emotions during their cancer experience patients also find that once they are diagnosed, they feel that they have changed from the person they thought they were. Instead of being a husband or father, mother or sister, Harkin, Beaver, Dey & Choong (2015) found that cancer patients notice that they have become someone else after their cancer diagnosis. Cancer patients feel they are no longer who they thought they were but have become a ‘person with cancer’, a process which they termed “a journey to recreate identity”. In addition to recreating themselves patients undertake several journeys during their cancer experience. “A journey to become informed” happens when users access online communities to gather information. A “journey through different worlds”, is where users gain access to information whilst remaining anonymous. Harkin et al., (2015) found that most patients had to navigate their way through the aforementioned journeys during their cancer experience.
One of the advantages of an online cancer community is that interactions are not restricted to place and time, giving users the ability to interact with others all over the world at any time for asynchronous chat. They have access from the comfort of their home, rather than have to attend face-to-face groups which are sometimes scheduled at times and places which are difficult for patients and their families to attend (Harkin et al., 2015; Namkoong et al., 2017). Face-to-face groups have been set up to allow cancer patients to meet and discuss their disease and mechanisms for coping with cancer, depression and the stress associated with treatment and the recovery. These type of face-to-face interactions experience a large drop-out rate, as patients are unable to attend for various reasons, including: inability to attend the venue due to lack of transport, inability to drive and being reliant on family and friends for lifts, lack of available public transport, or meetings held at times when the patient is working, having treatment or when hospital appointments have been scheduled, all of which leaves the sufferer socially isolated (Harkin et al., 2015). Namkoong et al., (2017 p.1423) state that unlike a face-to-face situation where attendees may not want to discuss their personal situation, that online communities allow interaction where participants are not aware of another’s real name, ethnicity or social status, where convenience and anonymity makes it easier to share sensitive information (Lu, Zhang, Liu, Li, & Deng, 2013). Lu et al., further assert that by sharing and receiving advice from others in an online community, patients are better able to cope with their disease.
Other advantages to becoming a member of an online cancer support community include learning and understanding medical terminology which helps users with cancer understand what is being said to them when they meet with their healthcare professional. According to Harkin et al. (2015) patients who have just been diagnosed with cancer and visit their healthcare professional come away remembering very little of what has been explained to them and forget to ask important questions. This in turn leads them to turn to online communities to find someone who has experienced their particular cancer to find out what to expect and possible treatments. Graffigna, Libreri & Bosio (2012) suggest that patients who have access to online communities are able to become empowered and take charge of their own treatment and improve their mental well-being as well as help them make decisions about their treatment, based on advice from others suffering from the same condition (Graffigna, Libreri, & Bosio, 2012 p.324). Many users of online cancer communities are just “lurkers”, meaning that they do not post but just watch and learn. Zhang et al., (2017) claim that of internet users as a whole, 90% lurk, 10% post and of those only 1% are “super users.” They state that when using online cancer communities, there are super users who account for 1%, and these people post often and give advice to others, which enables them to build social capital (Cornwell, 2017). Zhang, Bantum, Owen, Bakken, & Elhada, (2016) maintain that the users who lurk have either a lesser form of cancer or have not had it for very long. Their research also suggests that lurkers do not get as much out of the forums as those who actively participate.
There are some disadvantages to using online cancer communities for information. Not all information is accurate, and users have to be able to sort out valid information from false. This can be very difficult, especially for cancer patients and their families who do not have medical experience. False or misleading information can lead to stress and depression. Often new users of these online communities become disenchanted and upset if they are unable to find the information they were seeking, especially if their particular form of cancer is not well covered or is very rare. Such users often leave without gaining satisfaction. Even though family and friends are crucial as a support network, “peers who share similar problems can be a better choice when one needs emotional support such as empathy and encouragement from others” (Zhang, Bantum, Owen, Bakken, & Elhada, 2016). This supports Wellman & Gulia’s (1999) theory that online communities can provide both weak and strong ties and that those people who have experienced the same or similar disease are better able to offer more specialised support.
Schweizer, Leimeister & Krcmar (2006) found through their research that cancer patients who had been using the internet for more than two years for cancer-related topics were more likely to develop virtual relationships (p. 4475). This has its drawbacks as users who develop close relationships can become very distressed when they discover that their friend has succumbed to cancer (Schweizer, Leimeister, & Krcmar, 2006). A close look at the Australian Cancer Council Online Community pages, shows many people who have asked and been given help and information, and who have reciprocated when they are obviously very ill themselves. In one particular instance, a man, who had undergone many operations and procedures in order to deal with his primary and secondary cancers, suddenly stopped commenting, despite always appearing to be there for others. In a later additional post, using her husband’s user name, his wife explained to the rest of that particular group that her husband had died and that if they wanted to talk about their specific form of cancer they could contact her via her new user name, so even though her husband had succumbed to the disease she was willing to continue his legacy of helping others (Cancer Council, 2019).
As well as the foregoing disadvantages to using online cancer communities, there is also the problem that not everyone has access to these services. According to Statista, (2018) only 88% of Australians have access to the internet, whilst Harkin et al, (2015) state that these figures are similar in the EU, USA and Great Britain. Thomas et al., (2018) assert that whilst many families are connected and have access to the internet there are still a large proportion, approximately 2.6 million Australians, who include migrants, those with limited internet access and those with a low income are still unable to gain access to these valuable online resources (Thomas, Wilson, & Park, 2018). Many of the unconnected people are in the 55 and over category. Thomas et al., state that of those who can access online communities, only one in five people in the 55+ age group access the internet for health advice, which they recognise is extremely low. Considering that many of these people are alone and isolated or in rural areas, this age group might also be concerned about sharing information online due to privacy issues. Brady, Seegers & Sanders (2016) claim that patients who use online forums to gather information about their condition generally are very careful about the amount and type of information they share with others in order to maintain their privacy. This view is supported by Frost, Vermeulen & Beekers (2014) who suggest that although online communities do offer benefits to patients, there are different levels of information that they are prepared to share. Clinical information about their condition and treatment being the type of information that is easily shared, others need this type of information if they are to offer advice, this type of information is seen as low risk from a privacy point of view. Whereas personal information relating to a person’s home life or identity is the type of information which a patient would be wary of sharing in face-to-face situations with strangers so they would think twice before disclosing this in an online situation as it may compromise their anonymity.
From personal experience and research, plus research from others it appears that emotional and social support from others via an online cancer support community is as important to cancer patients and their family and friends as that which is gained from face-to-face meetings. The main advantages being that users can be anonymous, support can be gained from the comfort of their homes and not having to attend meetings, and they can take advantage of the knowledge of a large group of people who have or had cancer so are able to provide information and advice from a personal perspective. This positive experience can only be achieved by actively taking part, posting information and questions, and receiving information and support in return.
References
Brady, E., Segar, J., & Sanders, C. (2016). “I always vet things” : Navigating privacy and the presentation of self on health discussion boards among individuals with long-term conditions. Journal of Medical Internet Research, 18(10), e274. doi:10.2196/jmir.6019
Cancer Council. (2019). Cancer Council Online Community. Retrieved from https://onlinecommunity.cancercouncil.com.au
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Eysenbach, G., Powell, J., Englesakis, M., Rizo, C., & Stern, A. (2004). Health related virtual communities and electronic support groups: systemic review of the effects of online peer to peer interactions. BMJ, 328(May 2004), 1-6. doi:10.1136/bmj.328.7449.1166
Frost, J., Vermeulen, I., & Beekers, N. (2014). Anonymity versus privacy: Selective information sharing in online cancer communities.Journal of Medical Internet Research, 16(5), e 126. doi:10.2196/jmir.2684
Graffigna, G., Libreri, C., & Bosio, C. (2012). Online exchanges among cancer patients and caregivers: Constucting and sharing health knowledge about time. Qualitative research in organizations and managment : An international journal, 7(3), 323-337. Retrieved from https://search-proquest-com.dbgw.lis.curtin.edu.au/docview/1156316984/fulltextPDF/59CDFD4625C14FCCPQ/1?accountid=10382
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This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
I really enjoyed your paper. I understand how important these online communities are for cancer patients and their families in terms of providing valuable support. Web 2.0 technologies have revolutionised this kind of interaction. I am curious if during your research you came across discussions in these communities promoting pseudoscience or bogus cures? I am thinking particularly of the case of Belle Gibson. Do you think there needs to be control of these kind of communities to mitigate potentially harmful false information and fake cures duping vulnerable people (which might ultimately shorten their life or kill them) especially if they halt their conventional cancer treatments? And do you think that these online communities encourage this kind of behaviour?
David
Thanks you for taking the time to respond to my paper. I did not come across any discussions promoting pseudoscience or bogus cures as I mainly based my paper on the Australian Cancer Council and more local sites which are overseen by professionals. I did dip into the overseas forums but found it very hard to find the information I was looking for, there is so much information on them it is hard to sift through and find exact answers, and easy to fall down the rabbit hole and try and read everything. My research also found that users become despondent and leave the forums when they do not find the information they need, I can attest to that . I can also see why that after the whole Belle Gibson scenario some people would be wary of misinformation and I found the iheard section of the Cancel Council site really handy as you are able to post something you have found and an expert will check to see if it is in fact true.
Reference
Cancer Council. (2019). iheard. Retrieved from https://www.cancer.org.au/about-cancer/online-resources/iheard.html
Thank you for sharing J. Online communities are unquestionably a valuable source of information, emotional support and coping strategies which better equip those afflicted by the life-altering illness to navigate their way through the challenges of this journey. Social media and Web 2.0 technologies have enabled many to seek advice and emotional support from acquaintances formed in online communities. I agree with your argument that whilst close family and friends can and do provide valuable support structures, they are often are unable to completely understand due to lack of personal experience with the disease, or, are they are simply fatigued from long-term support. Maintaining a positive outlook on life when managing with a life-threatening disease such as cancer is certainly no easy feat, therefore, the emotional support and empathy provided by virtual community members are invaluable. From your first-hand experience with cancer, I think that being part of an online community has helped you build resiliency to better cope with what has to be a daunting experience. Keep the faith!
Thank you for taking the time to respond to my paper K, sorry its taken so long to reply but just had another round of hospital appointments. I have found from my own experiences that the online communities can be very daunting, especially some of the overseas sites which contain so much information it would take a lifetime to find that which is pertinent to your own situation. It does appear however, from my research it appears that many people do find comfort and useful information using these valuable resources.
From a privacy point of view I found that research suggests that if someone is in need of health information, such as treatment regimes or opinions on diagnosis that they are prepared to share their private medical information up to a point, sufficiently to allow others to give their advice and experiences. Personal information such as where they live, name etc., they will think twice about as this is the sort of information that they would not normally share with a stranger. Frost, Vermeulen and Beekers (2013) agree with your comment that each person weighs up the benefits of received information compared to a sense of loss of privacy due to sharing some of their medical information, they “ argue that patients prefer sharing clinical information over daily life and identity information that potentially compromises anonymity.”
Frost, J., Vermeulen, I., & Beekers, N. (2014). Anonymity versus privacy: Selective information sharing in online cancer communities. Journal of Medical Internet Research, 16(5), e 126. Retrieved from doi:10.2196/jmir.2684
Hi Jane
Thank you very much for sharing not only some of your personal experience but also preparing and researching on something that in all likelihood is very close to many of our lives. My Mum has had breast cancer twice and my husband’s mother eventually passed away from pneumonia which she contracted post extremely aggressive chemo which had put her in remission but left her body with no immune system. Not an uncommon factor in many patients passing away which is so sad.
I think this is a fantastic paper and wholeheartedly appreciate the efforts communities and networks online go to to help and provide support as well as advice.
Just a couple of things for me and this is really from my Mum’s experience, frankly she is one of those cancer patients/survivors who hates talking about it or even really thinking about it and least of all going online which she is truly sceptical of from a privacy point of view. And yet she was also quite mentally traumatised the first time round when I was only 18 and really not equipped to cope, sadly this was the early days of the internet and I she really wouldn’t have even know how to reach out and nor would I.
That made me think of the support that carers and the like need, sometimes it’s just about a conversation or how to deal with the impact it is having on your life as the person who is supposed to be there for the patient but is not coping themselves. Did you find in your research that these online communities also extended to the support network for patients?
And secondly, the very important issue that you raise regarding accessibility across not only the country but also the age differential. So older people are not accessing this for many reasons, whether it’s scepticism or no computer or internet access. And then there are other communities with no access to a computer etc. And it is often the most disadvantaged that are in these communities and yet the ones that probably need this extra support or access to this information the most. Is there something in how we can enable this to spread in other ways or how health professionals and local communities can bring these online communities to the most vulnerable?
I realise this is not just an issue for cancer patients, it exists for domestic violence and other areas of disadvantage. Although going off topic this is something I’d be interested to hear people’s thoughts about how the internet which many people can still not access can have a positive effect in their lives.
Hi Jane
Your paper is very informative regarding cancer, the silent killer, you’re own personal experience gives credence to the lack of genuine information on this subject. I am heartened to hear the Cancer Council have a section on their site that people can post questions or information for the experts to check if it is true. This so important to cancer sufferer’s trying to find your way through the maze of data is mind boggling. My husband passed away from Leukaemia last year, we had three weeks left from the time he was diagnosed and sadly didn’t have the option to explore other avenues. Cancer is a hideous disease, regardless of age or gender or race, thank you for sharing your own aspect and information in this paper.
Thank you for taking the time to read and comment on my paper Robin. So sorry to hear about your husband. I know from personal experience how quickly cancer can take someone from you. My father and mother were coming out to visit me in Australia from the UK some years back, and they went for a medical examination before travelling and they discovered that my father had lung cancer, he lasted three months and I was unable to travel back to the UK to see him.
Hi J
Thank you for your informative paper.
I found some few similarities between your paper and K Bips Online Health Communities: Benefits, Privacy Concerns and a Shift in the Traditional Patient-Physician Dynamic, both dealing with illness and Internet communities and how they can be a source of information and friendship.
One thing that resonated with me from your paper was the statement:
“According to Harkin et al. (2015) patients who have just been diagnosed with cancer and visit their healthcare professional come away remembering very little of what has been explained to them and forget to ask important questions. This, in turn, leads them to turn to online communities to find someone who has experienced their particular cancer to find out what to expect and possible treatments”
This has definitely been my experience as someone with a few chronic illnesses. It took me a long time to realise I need to take an advocate with me and until then I relied heavily on my virtual community to make sense of things that were said and go over what choices I may or may not have been given by my doctors.
One of my children had cancer before the rise of social media communities, and I now work in a space where I come into contact with paediatric cancer patients regularly. The call to arms that these communities can arrange are inspiring whether a public page or their private Facebook groups. I am quite envious of this connectivity as back in our day we had a shared kitchen and the odd newsletter that kept us in touch, but nothing so immediate and reassuring from our own home.
My last observation and one that I pointed out to K Bips is that the global nature of the Internet does highlight the difference in health care (and cost) around the world. While illness is always awful, I am often reminded that our Australian health care system (while with its faults) is something to be grateful for.
Cheers and best wishes
MJ
Thanks MJ for taking the time to respond to my paper. The cost of health care in other countries does make you think. With our situation we have been offered heavily discounted car trips to hospital and physio appointments, plus fortnightly calls from the cancer council checking in, free blood tests twice a week, and even home help for cleaning the house, I doubt there are many countries in the world that can offer that kind of service.
Jane
Stephanie
Thank you for reading my paper and taking the time to comment.
In answer to your first question. “Did you find in your research that these online communities also extended to the support network for patients?” I found that most of the online communities encouraged family and friends of cancer patients to take part. In fact the Cancer Council here in Australia has a section for carers, family and friends to post and received information:
https://onlinecommunity.cancercouncil.com.au/t5/Family-Friends-and-Carers/ct-p/family-friends-and-carers
This forum deals with diagnosis and treatment; coping with a loved one’s cancer; work, financial and legal support; and grief and loss. Many people use the forum and hopefully have gained some help from it. This is a post from Sunday which I felt sums up the people on there, this is in response to a lady whose husband has lung cancer:
“I’m sorry to hear that you are going through a temporary tense moment in your life. It’s really great to see that you have support! You know you could call the cancer council on ph: 13 11 20, they offer all kinds of services and support. Maybe they can offer some advice on what available financial services are out there for you? Maybe even visiting Centrelink would be a worthwhile consideration.
You don’t need to be strong all the time, no one is capable of that. It’s okay to cry and it’s okay to breakdown too, it’s how we release our frustrations or feelings of helpless throughout our daily lives. Remember that you are resilient and resilient people may stumble or even fall but they always eventually get back up.
You are not alone and many many others on here are very familiar with your story as it’s theirs too.”
There are pages and pages of stories like the above.
In answer to your other question in reference to people being unable to access information online: ” Is there something in how we can enable this to spread in other ways or how health professionals and local communities can bring these online communities to the most vulnerable?”. I feel that public libraries are not put out there as places where people from the catchment area can access the internet. I know from my own local library that the staff are more than willing to help with advice on where to look for information. Haythornthwaite and Kendall (2010) have an interesting article on “community informatics” which although this appears to be a US initiative but would definately be applicable anywhere, state:
“Community informatics work is often directed toward bringing Internet connectivity into underserved regions in the form of free computers and/or Internet access, training in computer use, or the creation of community technology centers in churches, schools, and community centers”.
References
CancerCouncil. (2019). Cancer Council Online Community. Retrieved from https://onlinecommunity.cancercouncil.com.au
Haythornthwaite, C., & Kendall, L. (2010). Internet and Community. American Behavioral Scientist, 53(8), 1083-1094. Retrieved from doi:https://doi.org/10.1177/0002764209356242
Thanks Jane for coming back to me, its good to know there is such a strong supporters network for carers, a group of us from our office took part in Relay for Life here in Melbourne last year and it was incredibly moving having both survivors and carers represented. We are also doing it again this year as we raised a lot of money which was great.
I am very interested to see how we can help support the e-exclusion or digital divide, looking at those local community institutions to provide that support. It can’t be easy given the strain on monetary resources and of course those who are not able to attend their local library or are not digitally savvy. I know that our local libraries and councils put together programs for residents to upskill in these areas, hopefully this is part of a more caring and inclusive way to make sure we bridge that exclusion gap. Where we still might have issues are more directly related to cost and accessibility for things like the NBN in rural areas etc. I’m no expert on this but assume that for many the economics still don’t stack up.
Thanks for coming back to me again Stephanie. As I have just answered to David, we are way outside the metro area in WA but we have unlimited NBN. When we lived closer to the metro area we had limited access to the internet, which was slow, dropped out and unreliable. On top of that our ISP had their telecentre overseas and the people could not understand that “No I can’t see my computer from here as I am standing outside in a paddock in 40ºC heat as my mobile doesn’t work at the house.”
Hey JJose,
I enjoyed reading your paper. I feel like I got a lot from it, There was one particular part where you said;
>”Thomas et al., (2018) assert that whilst many families are connected and have access to the internet there are still a large proportion, approximately 2.6 million Australians, who include migrants, those with limited internet access and those with a low income are still unable to gain access to these valuable online resources (Thomas, Wilson, & Park, 2018)”
I personally find this very troubling as my partner works in the women’s health field. She has been spending some time recently trying to figure out a way to do online appointments via a webcam so her company could offer services to people in rural areas.
One of the biggest speed bumps was not only the fact that many did not have internet, but a lot of them did not have the internet speeds capable to use a webcam consistently.
Did you at all come across any research about this while writing your paper? Do you think the speed of the service plays any factor in the way they communicate?
Thanks you for your comment David. I find from personal experience living in a rural area that it depends where you live. Our last house was in a dead zone, no mobile phone coverage, landline did not work half the time, especially if it rained, and our internet was via a satellite, that cost a fortune and was off more than it was on. That certainly affects they way you interact online. Our speed was so slow that we couldn’t stream anything and even looking at YouTube videos we spent more time buffering than actually watching anything, and that chewed through the small amount of data we had every month. We have now moved even further out from the metro area but have unlimited NBN? I guess it depends where the politicians want to spend money for votes??