Transcript Read publication - CLAHRC Wessex

Online communities,
technology and Health
Chris Allen
Clinical Academic Doctoral Research Fellow
Collaboration for Leadership in Applied
Health Research and Care (Wessex)
Theme 5: Engagement with Self Directed
Support
• Engagement with self-directed support
is a research an implementation theme
of the NIHR CLAHRC Wessex.
• There are some effective online
resources including e-health and
mobile apps available. An aim is to find
out how they can best be adapted and
used within the health service and in
informal settings.
Collaboration for Leadership in Applied Health Research and Care (Wessex)
Long-Term Condition SelfManagement
• Any condition which at present cannot be cured, but can be
managed through medication and other treatments; such as
Diabetes, Chronic Obstructive Pulmonary Disease (COPD),
Arthritis, Chronic Pain, Asthma. (DOH 2005, 2010, 2015)
• People with chronic illness spend very little time with health
care professionals compared to the time spent managing
their illness in daily life. (Rogers et al, 2014)
Collaboration for Leadership in Applied Health Research and Care (Wessex)
Illness work
• Illness (specific) work: work such as taking medication, taking and
interpreting measurements, understanding condition and its
symptoms, and making appointments
• Everyday work: tasks such as housekeeping, occupational labour,
support, and activities relating to diet and exercise, shopping and
personal care
• Emotional work: work related to comforting when worried/anxious
about everyday matters, such as health, well-being, and
companionship (including a biographical dimension relating to the
reassessment of personal expectations, capabilities, future plans,
personal identity, relationships and biographical events) (Vassilev
et al, 2013; Rogers et al, 2011)
Collaboration for Leadership in Applied Health Research and Care (Wessex)
Weak ties
•
Those with more diverse networks manage their long-term condition better
than those with less diverse ones (Rogers et al, 2014)
•
The
•
(Donarth and Boyd, 2004: Ellison et al, 2007).
•
It makes the process of tie formation more efficient and cognitively effective
in maintaining and establishing social ties (Donarth, 2007).
•
May afford members a more diverse social network-since ties mediated
online are not restricted by geographical boundaries that typically define
offline networks (Donarth, 2007; Coulson, 2014).
internet is very good at creating weak ties
Collaboration for Leadership in Applied Health Research and Care (Wessex)
The Internet (a timeline)
ARPANET
WORLD-WIDE-WEB
ETHERNET
WEB 2.0
1994
1969
1980
1989
1998
2002 2004
2010
2006
INTERNET
FTP & TCP/IP
Collaboration for Leadership in Applied Health Research and Care (Wessex)
Smart Phones
Collaboration for Leadership in Applied Health Research and Care (Wessex)
Stage 1: Long-Term Condition Self-Management
Support in Online Communities: A Meta-Synthesis
of Qualitative Papers
Objective: To understand the negotiation of long-term condition illness
work in patient online communities and how such work may assist the
self-management of long-term conditions.
Methods: A systematic search of qualitative papers was undertaken
using various databases- for articles published since 2004.
A total of 21 papers met the inclusion criteria of using qualitative
methods and examining peer-led online communities for those with a
long-term condition.
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Conditions
4
3
2
1
0
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Applications
18
16
14
12
10
8
6
4
2
0
Discussion board/forum
Facebook
Patients like me
Collaboration for Leadership in Applied Health Research and Care (Wessex)
Long-Term Condition Self-Management
Support in Online Communities: A MetaSynthesis of Qualitative Papers
Collaboration for Leadership in Applied Health Research and Care (Wessex)
Long-Term Condition Self-Management
Support in Online Communities: A MetaSynthesis of Qualitative Papers
Collaboration for Leadership in Applied Health Research and Care (Wessex)
Results- second order constructs
The main themes identified in relation to the negotiation of selfmanagement support were:
1) Redressing offline experiential information and knowledge deficits
2) The influence of modelling and learning from others on selfmanagement
3) Engagement which validates illness and negates offline frustrations
4) Tie formation and community building
5) Narrative expression and cathartic release
6) Dissociative anonymity and invisibility
Collaboration for Leadership in Applied Health Research and Care (Wessex)
Results- third order constucts
From this, four network mechanisms for self-management support in online
communities were identified:
1. Collective knowledge and identification through lived experience
2. Support, Information, and Engagement Through Readily Available Gifting
Relationships
3. Sociability that Extends Beyond Illness
4. Online Disinhibition as a Facilitator in the Negotiation of SelfManagement Support
Collaboration for Leadership in Applied Health Research and Care (Wessex)
Summary of second- (blue) and third-order (grey)
constructs in relation to the negotiation of selfmanagement support in patient online communities.
Collaboration for Leadership in Applied Health Research and Care (Wessex)
Where now?
• Where does this support fit within someone's whole
configuration of social support?
• In what contexts and circumstances do people turn
to support online and offline and for what?
• What are the individual (sociodemographic) and
network characteristics of those who use the
internet for support?
Collaboration for Leadership in Applied Health Research and Care (Wessex)
Where now?
Stage 2: Qualitative interviews and
concentric circle exercises of peoples
experience with online and offline
networks of support.
What is the context and circumstances
of engagement with patient online
communities in those who use them to
aid the self-management of a long-term
condition and how do people perceive
the support that is available in the
context of their overall social network.
Stage 3: Secondary analysis of data from
the Understanding Networks of Care and
Information Needs of People with
Diabetes, Heart Disease and Kidney
Disease (UNET) research project.
What are the network level, network
member and individual level factors that
are associated with using the internet for
long-term condition self-management.
Collaboration for Leadership in Applied Health Research and Care (Wessex)
Digital divide or participation divide?
“When society understand the digital divide as a
problem of access, we see government and
industry as the responsible party for addressing
the issue.
When society understands the digital divide as
a skills issue, we place the onus of learning how
to manage on individuals and family” (Boyd,
2014, p. 196)
Collaboration for Leadership in Applied Health Research and Care (Wessex)
“The internet is a reflection of our society
and that mirror is going to be reflecting what
we see.
If we do not like what we see in that mirror
the problem is not to fix the mirror, we have
to fix society.” (Vint Cerf)
Collaboration for Leadership in Applied Health Research and Care (Wessex)
Questions
Collaboration for Leadership in Applied Health Research and Care (Wessex)
References
Allen, C., Vassilev, I., Kennedy, A., Rogers, A. (2016). Long-Term Condition Self-Management Support in Online
Communities: A Meta-Synthesis of Qualitative Papers. Journal of Medical Internet Research. 18 (3).
Attard A and Coulson N (2012) A thematic analysis of patient communication in Parkinson's disease online support
group discussion forums. Computers in Human Behaviour 28: 500-506
Barker K (2008) Electronic Support Groups, Patient-Consumers, and Medicalization. The Case of Contested Illness*. .
Journal of Health and Social Behaviour 49: 20-36
Brown S and Altice F (2014) Self-Management of Buprenorphine/ Naloxone Among Online Discussion Board Users.
Substance Use & Misuse. 49(8): 1017-1024
Coulson N (2014) Sharing, supporting and sobriety: a qualitative analysis of messages posted to alcohol-related online
discussion forums in the United Kingdom. Journal of Substance Use 19 (1-2): 176-180
Coursaris C and Liu M (2009) An analysis of social support exchanges in online HIV/AIDS self-help groups. Computers
in Human Behaviour 25(4): 911-918
De Silva D (2011) Helping people help themselves: A review of the evidence considering whether it is worthwhile to
support self-management. The Health Foundation: Inspiring Improvement. [Accessed 13/10/2015]
Collaboration for Leadership in Applied Health Research and Care (Wessex)
References
Doh (2005) Self-Care- A Real Choice. Self-Care Support- A Practical Option. [Accessed 13/10/2015]
Doh (2010) Improving the health and well-being of people with long term conditions: World class services for people with long
term conditions- information tool for commissioners. Department of Health [Accessed 13/10/2015]
Doh (2015) Policy Paper: 2010 to 2015 goverment policy: long term health conditions. . [Accessed 13/10/2015]
Donarth J (2007) Signals in social supernets. Journal of Computer Mediated Communication 13(1): 231-251
Donarth J and Boyd D (2004) Public displays of connection. BT Technology Journal 22(4)
Ellison N, Steinfield C and Lampe C (2007) The Benefits of Facebook "Friends": Social Capital and College Students' Use of
Online Social Network Sites. Journal of Computer Mediated Communication 12: 1143-1168
Greene J, Choudhry N, Kilabuk E and Shrank W (2011) Online Social Networking by Patients with Diabetes: A Qualitative
Evaluation of Communication with Facebook. Journal of General Internal Medicine 26(3): 287-292
Hadert A and Rodham K (2008) The invisible reality of arthritis: a qualititative analysis of an online message board.
Musculoskeletal Care 6(3): 181-196
Kazmer M, Lustria M, Cortese J, Burnett G, Kim J, Ma J and Frost J (2014) Distributed knowledge in an online patient support
community: Authority and discovery. Journal of the Association for Information Science and Technology 65(7): 1319-1334
Collaboration for Leadership in Applied Health Research and Care (Wessex)
References
Kirk S and Milnes L (2015) An exploration of how young people and parents use online support in the context of living
with cystic fibrosis. Health Expectations
Kozinets R (2013) Netnography: Doing Ethnographic Research Online. London: Sage Publications
Loane S and D'alessandro S (2013) Peer-to-Peer Value Through Social Capital in an Online Motor Neuron Disease
Community. Journal of Nonprofit & Public Sector Marketing 25(2): 164-185
Matura L, Mcdonough A, Aglieti L, Herzog J and Gallant K (2012) A Virtual Community: Concerns of Patients With
Pulmonary Hypertension. Clinical Nursing Research 22(2): 155-171
Merolli M, Gray K and Martin-Sanchez F (2014) Therapeutic Affordances of Social Media: Emergent Themes From a
Global Online Survey of People With Chronic Pain. Journal of Medical Internet Research 16(12): e284
Mo P and Coulson N (2014) Are online support groups always beneficial? A qualitative exploration of the empowering
and disempowering processes of participation within HIV/AIDS- related online support groups. International Journal of
Nursing Studies 51(7): 983-993
Rodham K, Mccabe C and Blake D (2009) Seeking support: An interpretive phenomenological analysis of an internet
message board for people with Complex Regional Pain Syndrome. Psychology & Health 24(6): 619-634
Collaboration for Leadership in Applied Health Research and Care (Wessex)
References
Rogers A, Brooks H, Vassilev I, Kennedy A, Blickem C and Reeves D (2014) Why less may be more: a mixed methods
study of the work and relatedness of 'weak ties' in supporting long-term condition self-management. Implementation
Science 9(19)
Rogers A, Vassilev I, Sanders C, Kirk S, Chew-Graham C, Kennedy A, Protheroe J, Bower P, Blickem C, Reeves D,
Kapadia D, Brooks H, Fullwood C and Richardson G (2011) Social networks, work and network-based resources for the
management of long-term conditions: a framework and study protocol for developing self-care support. Implementation
Science 6(56)
Suler J (2004) The Online Disinhibition Effect. Cyber Psychology & Behavior 7(3): 321-326
Van Berkal J, Lambboij M and Hegger I (2015) Empowerment of patients in online discussions about medicine use.
BMC Medical Informatics and Decision Making 15(24)
Van Uden-Kraan C, Drossaert C, Lebrun T, Drossaers-Bakker K, Smit W, Seydel E and Van De Laar M (2008a) Coping
with somatic illness in online support groups. Do the feared disadvantages actually occur? Computers in Human
Behavior 24: 309-324
Van Uden-Kraan C, Drossaert C, Shaw B, Seydel E and Van De Laar M (2008b) Empowering Processes and
Outcomes of Participation in Online Support Groups for Patients With Breast Cancers, Arthritis, or Fibromyalgia.
Qualitative Health Research 18(3): 406-417
Collaboration for Leadership in Applied Health Research and Care (Wessex)
References
Vassilev I, Rogers A, Kennedy A and Koetsenruijter J (2014) The influence of social networks on self-managament
support: a metasynthesis. BMC Public Health 14(719)
Wentzer H and Bygholm A (2013) Narratives of empowerment and compliance: Studies of Communication in online
patient support groups. International Journal of Medical Informatics 82: 386-394
Willis E (2014) The making of expert patients: the role of online health communities in arthritis self-management.
Journal of Health Psychology 19(12): 1613-1625
Zhang Y, He D and Sang Y (2013) Facebook as a Platform for Health Information and Communication: A Case Study
of a Diabetes Group. J Med Syst 37(3): 1-12
Ziebland S and Wyke S (2012) Health and Illness in a Connected World: How Might Sharing Experiances on the
Internet Affect People’s Health. Millbank Quarterly 90(2): 219-249
Collaboration for Leadership in Applied Health Research and Care (Wessex)