I had a brother with Cystic Fibrosis (CF). We were two and a half years apart – I grew up living in the shadow of his illness (Bluebond-Langer, 1996). Growing up I did not have any contact with other siblings and in fact wrote a book several years ago on this experience and thought that this course would be a great opportunity to learn how I would go about creating an online community where siblings could engage and share their experiences.
In looking back it has been a fantastic opportunity as a learner to use NGL on this topic. So far I have seen many examples from around the world where CF support communities exist. Twitter is alive with them and Facebook also has its share. In looking forward, I aim to see what NGL can offer groups such as these.
I think one of the most frustrating things about being a learner is not knowing what I don’t know. When I commenced this course, the technology was new, the concepts were new, the language was new and trying to get my head around PKM was new. To take this new way of working and transfer it to learning something new was another step up the learning ladder. Originally, I thought about doing something such as learning how to fix a ding on a surfboard but that was easily achieved through the use of YouTube on one rainy Saturday afternoon.
CLEM and communities
The CLEM (Community, Literature, Examples and Model) approach to learning and teaching was a useful approach to assist in gathering thoughts and making a planned approach.
In assessing which communities were already out there I ended up searching on Facebook and Twitter. I found multiple communities and linked up with these. I found one called ‘Run SickBoy Run’ and another one called ‘Spit It Out’ which is a patient’s perspective on developments in the treatment and management of CF. A lot of these links then provided links to other sites across the globe. For example, CF Canada, CF Trust, CFUnite, Cochrane Cystic Fibrosis Group, Gen Hanley’s CF Research Blog, Organ Donation, healthtalkonline, UK Clinical Trials Gateway, UK CF Gene Therapy Consortium, Cystic Fibrosis Foundation, Cystic Fibrosis Research, Inc., Rare Disease UK, Eurordis.
In terms of my real interest on siblings it was a little harder to locate Communities. The ones I did include were based on Google searches.
‘Chronic disease in children can lead to a host of social and psychological problems for patients and their families. The burden on the family may cause marital conflicts, limit social life, distract attention from other children.’ (Shapiro & Heussnet, 1991, p 63.).
There is a range of literature around siblings of people with disabilities or terminal illnesses and the psychosocial impacts. From looking at the literature it is clear that support tools are an important means of offering emotional and social development opportunities to build self-concept (Dew, Balandin, & Llewellyn, 2008). As highlighted in other sibling studies literature, it was common for siblings to be dissatisfied with the lack of information they had received to the point that they had not felt involved the dying process (Nolbris & Hellstrom, 2005).
The same article said that siblings stated that friends and school were important as a means of representing a normal environment – an escape. Communities offer the opportunity to meet, share feelings and provide a sounding board for questions and new ideas; as James Surowiecki (2004) says, ‘Many can be smarter than the few.’ In my experience growing up, the problem was in locating such a network. However, today with the benefit of the internet, such communities are easily accessible.
One example of where networked learning is being used to help siblings of those with terminal illnesses is called www.livewire.org.au. It is dedicated to people between 10 and 20 for connecting with like-minded people. Unfortunately, it doesn’t support older age groups but that maybe an opportunity for me to pursue.
The ICT would work by people coming together to share and learn from each other’s experiences. It would be an online space where people can connect and share what they are either going through or have gone through. It would involve real life stories, networking, sharing resources and using others to answer questions and encourage people to build their coping skills and strategies.
Global connectedness offers the opportunities for communities to develop. It is obviously important for business and economic growth. According to this blog from Deutsche Post DHL experts, ‘People of globalized countries enjoy access to a wider variety of goods and services, lower prices and more and better-paying jobs’. In terms of NGL, one of the key benefits of global connections is that information flows. A global network can expand educational opportunities. As the blog says, ‘We believe educational equality is strongly linked to employability, and that young people should have access to the full range of career opportunities a connected world provides.’
Stephen Downes describes how connectivism works. ‘[K]nowledge is distributed across a network of connections, and therefore that learning consists of the ability to construct and traverse those networks.’ Social constructivism as a learning theory and its application to the classroom and the learning environment setting has many benefits (Zualkernan, 2006). As this site says, ‘the classroom is no longer a place where the teacher (“expert”) pours knowledge into passive students, who wait like empty vessels to be filled. In the constructivist model, the students are urged to be actively involved in their own process of learning.’
As a learner in NGL this means that siblings who have grown up or are growing up around cystic fibrosis, through connectivism, can use their experience to not only help others but also construct and make meaning of their own situation. Unlike my experience, as a passive recipient, with nobody to share, people can be part of a constructivist experience solving problems where ‘there is a sense of connectedness, of shared passion and a deepening of knowledge to be derived from ongoing interaction. Knowledge development can be continuous, cyclical and fluid.’ (Gannon-Leary, Fontainha, 2007).
Bigum, C., & Rowan, L. (2013). Ladders, Learning and Lessons from Charlie: exploring the potential of public click pedagogy (No. 2).
Bluebond-Langer, M. (1996). In the shadow of illness. Published by Princeton University Press. New Jersey USA.
Dew, A., Balandin, S., & Llewellyn, G. (2008, June 7). The Psychosocial Impact on Siblings of Peole with Lifelong Physical Disability: A Review of the Literature. Journal of Development Physical Disabilities.
Gannon-Leary, P., & Fontainha, E. (2007). Communities of Practice and virtual learning communities: benefits, barriers and success factors. Elearning papers.
Nolbris, M., & Hellstrom, A.-L. (2005, July/August). Siblings’ Needs and Issues When a Brother or Sister Dies of Cancer. Journal of paediatric Oncology Nursing, 22(4), 227-233.
Shapiro, L. B., & Heussnet, R. C. (1991). Parent’s Guide to Cystic Fibrosis. Minneapolis USA: University of Minnesota Press.
Surowiecki, J. (2004). The wisdom of crowds: Why the many are smarter than the few. London: Abacus
Zualkernan, I. (2006). A framework and a methodology for developing authentic constructivist e-Learning environments. Educational Technology & Society, 9(2), 198-212.