Study participants wanted for research into managing social media accounts for people with dementia

I am currently recruiting participants for a research project that investigates how carers manage or help to manage the social media accounts for people with dementia (for example, Facebook, Instagram, Twitter, etc).

Participants will be asked to keep a diary related to the activities they undertake on behalf of the person with dementia for two weeks, followed by an interview which can be conducted in person or via phone or video call. (Participants do not need to be the primary carer, but they should play a role in helping to manage social media accounts.)

If you are interested in taking part in this study, please contact me at f.ryan@napier.ac.uk.

More about this study:

The project is titled “Social media by proxy: strategies for managing the online profiles of adults with dementia” and is being undertaken with Dr Gemma Webster (PI). The work is funded by a Carnegie Trust Research Incentive Grant.

The work was developed based on Gemma’s previous work with people with dementia, carers, and dementia support organisations and my own PhD work on social media use. The combination of these research areas is strengthened by the fact that social media use by older adults is at an all-time high and the increase in people with dementia*. This brings the ongoing discussions of social media use in today’s society to a growing population of users.

The general goal of this research is to identify how people manage the social media accounts of adults with dementia “by proxy”. This includes:

  • How “proxies” manage social media accounts for people with dementia in their care;
  • How and if people with dementia engage with their social media accounts (with or without support); and
  • What kind of support (if any) “proxies” have for managing these social media accounts.


For more information about this research, or to note interest in participating, please contact me at f.ryan@napier.ac.uk.


Note: This project has been given ethical approval by Edinburgh Napier University.

And please feel free to re-share this information on your own social media platforms!

*UK statistics: Nearly half (48%) of Internet users aged 65-74 and 41% aged 75+ maintain social media accounts. Further, there are currently 850,000 people with dementia in the UK with a predicted rise to 1 million+ by 2025.

Let the work begin: The start of a new research project

Last week was the start of a new academic role for me—that of a research assistant on a Carnegie Trust Research Incentive Grant project. I will be working on this project on a part-time basis for the next six months and I am very much looking forward to doing research other than my PhD for a while.

I will be working with Dr Gemma Webster (PI) on the qualitative research project titled “Social media by proxy: strategies for managing the online profiles of adults with dementia”. The project was developed based on Gemma’s previous work with people with dementia, careers, and dementia support organisations and my own PhD work on social media use.

The broad goal of this research is to identify and share good practice in the “management by proxy” of the social media profiles of adults with dementia. Over the course of the first month, I will be conducting a literature search and an annotated bibliography. After that, Gemma and I will begin to work on the next steps of the study, including preparing for the data collection phase.

Six months isn’t a vast amount of time in the world of academic research. However, it is anticipated that this work will act as a springboard for further research. Plans are already underway to investigate the most appropriate opportunities for the next round of grant funding. With a bit of luck (and a lot of hard work!) I will be sharing research outputs with you before the year is out!

For more information about this research project, please contact me (f.ryan@napier.ac.uk) or Gemma Webster (g.webster@napier.ac.uk).

A research grant, by proxy

Earlier this year, I worked on writing a grant application to The Carnegie Trust for the Universities of Scotland with my colleague, Dr Gemma Webster. And I am excited to say that the application has been accepted under the Trust’s Research Incentive Grant scheme with Gemma as the Principal Investigator (PI).

The research project is called “Social media by proxy: Strategies for managing the online profiles of adults with dementia”. This work will investigate the lived experiences of people who act as “social media proxies” for adults with dementia in their care.

As the PI and lead applicant, it is Gemma’s experience and role as an established academic that allowed her to make the application (newbies like myself almost always need to ride the coattails of more senior researchers). And it is her experience that will guide the project so that we are in a better position for getting our work published and (hopefully!) creating an even larger funding application that will help us continue our research.

The inspiration for this research comes from Gemma’s past work with vulnerable adults and the recognition that the use of social media by older people is increasing whilst instances of dementia diagnoses are growing. Further, my own doctoral investigation into the role of online information in the building and management of personal reputation found that some participants have helped or noted concerns about vulnerable individuals in their lives and their use of social media. When considered together, we determined that the role of social media proxies for adults with dementia was a relevant and timely topic that warranted further research.

My role in this project is that of the research assistant. I will be work on the literature review, the design of the study, and data collection. I will also work with Gemma to analyse the results from our data collection and to create research outputs.

We plan to use a combination of participant diaries and in-depth interviews as data collection tools, a process I used for my PhD thesis. Participants (social media proxies) will keep a diary for a set amount of time where they will keep notes related to the online activities they undertake as proxies. This will include information about the specific tasks they undertake as well as any reflective thoughts they have about the tasks. Interviews will take place after the diary-keeping exercise and will include a range of topics related to participants’ roles as social media proxies.

We plan to report on this research through (1) a project report; (2) an academic journal article; (3) guidance materials for social media proxies (for example, leaflets); and (4) an article in The Conversation. A dissemination event for stakeholders will also be planned towards the end of this project. That event will include care home workers, carers of dementia patients, local authority officials, and members of third sector organisations that provide support to vulnerable and/or incapacitated groups.

On a personal note, I am grateful to Gemma for providing me the opportunity to work with her on this project. It will be my first piece of work after submitting my thesis, and it kind of serves as my first external grant (by proxy, in a round-about way). I am looking forward to learning from Gemma as she supervises my work and I’ll try not to let her down!

For more information about this research project, please contact me (f.ryan@napier.ac.uk) or Gemma Webster (g.webster@napier.ac.uk)

Accepted for publication: “Blurred reputations: Managing professional and private information online”

Last month, I was notified that a journal paper I wrote has been accepted for publication. The paper, “Blurred reputations: Managing professional and private information online”, was co-authored with my PhD supervisors, Peter Cruickshank, Professor Hazel Hall, and Alistair Lawson. It began life as a peer-reviewed conference paper at the Information: Interactions and Impact Conference (i3) in Aberdeen, Scotland and has since been expanded and refined for publication in a peer-reviewed journal, the Journal of Librarianship and Information Science.

This paper considers online information sharing practices used to build and manage personal reputations – specifically as it relates to the blurring between individuals’ private and professional “selves”. The findings are formed from my larger doctoral investigation into the role of online information and reputation. The main findings show that:

  1. The portrayal of different personas online contribute to the presentation (but not the creation) of identity.
  2. Online information sharing practices for reputation building and management vary according to social media platform.
  3. The management of online connections and censorship are important to the protection of reputation.
  4. The maintenance of professional reputation is more important than private reputation.

 

My own use of the three platforms considered in this research (LinkedIn, Twitter, and Facebook) share a lot of commonality with the findings in this paper. (Note: There are many variations, which you can read in the full paper.)

Like most of the participants in this study, I use LinkedIn as a professional networking platform and as an electronic CV. I have connected with a few people from my private life, but it is overwhelmingly filled with professional contacts. I only post information related to my professional life there, and I am quite put off by the idea that the site even asks me for my birthday and marital status (two bits of information that I don’t feel need to be divulged on a professional networking site).

I use Facebook as a private social networking site. I am quite strict about not connecting with current colleagues on Facebook (I have allowed for one exception) and only connect with former colleagues if they pass the “friend” test. I do not use Facebook for professional networking. I do, however, share some information related to my professional life on Facebook, as I find that my professional life blurs with my private life and personal interests at times.

Twitter is a mixed bag for me. For a while, I mixed my private and professional personas on one account (it was started as a private account). But then I realised that I needed to have two separate accounts, so I’ve branched off a bit.

When I share information on LinkedIn or my professional Twitter account, I have a standard rule of thumb: It should be related to my professional activities or interests. I rarely have to consider the negative implications of information I share because I try to avoid the political side of academics. (Though this is not a hard and fast rule.)

Sharing information on Facebook or my private Twitter account requires a bit more thought. This is because I am aware that (1) information shared in a private setting can find its way to a public or professional setting and (2) my social and political views are contrary to those of many of my connections. To address the first issue, I ask myself if the information is something I would be happy to share with my grandmother or my (fairly liberal) priest. If the answer is no, the information does not belong online. To address the second issues, I ask myself if I will stir up trouble with or offend certain connections. If the answer is yes, I will consider (a) not sharing the information, (b) sharing the information in an altered state, or (c) changing the privacy settings to hide the information from some people.

Of course, there is a lot more to how I manage the blurring between my professional and private information online—just like the participants in this study. To read more about how they manage the blur, you can download the paper here.

As always, I am very happy to answer questions about this paper or about my research as a whole.

Download:
Blurred reputations: Managing professional and private information online

Cite:
Ryan, F., Cruickshank, P., Hall, H. & Lawson, A. (2018 in press). Blurred reputations: managing professional and private information online. Journal of Librarianship and Information Science.

And please do share!