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The role of social media peer support in cochlear implant care

The role of social media peer support in cochlear implant care
The role of social media peer support in cochlear implant care
Aim: People with cochlear implants need lifelong support with their device for equipment, tuning, hearing checking, rehabilitation and any medical issues arising. Cochlear implant centres effectively provide care, but often in a clinic-centred way – regular review appointments rather than patient-led follow-up. The NHS Long term plan (NHS England, 2019) promises to increase support for people to manage their own care; engaged and empowered patients have better health outcomes (Hibbard, Greene, Shi, Mittler, & Scanlon, 2015). Social media has become an inescapable part of our lives – vital, distracting, infuriating, reassuring … (insert almost any adjective here, depending on the situation!). However emerging research is demonstrating significant advantages of social media for peer support in health conditions. The three domains of person-centred care, social media, and the internet are combining with powerful consequences, and have potential to create a seismic shift in how patients and clinics interact (Rozenblum & Bates, 2013). 
Method: The Southern Counties CI Group (SoCo) is a social group for people in the UK and Ireland, particularly from the USAIS area (Dorset, Hampshire, Wiltshire, Sussex) who have a cochlear implant or who are in the process of finding out about cochlear implants. SoCo has had an active Facebook group with nearly 200 members and multiple daily posts. Some people with cochlear implants may not wish to burden their loved ones with concerns, or may even receive unhelpful advice (albeit well-intentioned) from family members. Understandably, there are aspects of living with a cochlear implant that cannot be understood by someone who does not use an implant, and so much is gained from interacting with people ‘in the same boat’. Results: Benefits of social media peer support in general include accessing timely information, gaining confidence, improved self-management and empowerment, enhanced wellbeing, the feeling of ‘paying it forward’, more equal relationship with healthcare provider, and becoming expert partners in their care. Several members of the SoCo group will present this topic – describing the benefit they personally have received from peer support and any concerns they have with sharing information online.
Conclusion: Social media is not going away, and is being used by more and more people with cochlear implants. A peer support group has a vital place in the long-term support of people with implants, and should be acknowledged and supported by clinicians. Social media, the internet, and person-centred care look set to change the landscape of healthcare provision in the future. Reference (If applicable) Rozenblum, R., & Bates, D. W. (2013). Patient-centred healthcare, social media and the internet: the perfect storm? BMJ Qual Saf, 22(3), 183-186. Hibbard, J. H., Greene, J., Shi, Y., Mittler, J., & Scanlon, D. (2015). Taking the long view: how well do patient activation scores predict outcomes four years later? Med Care Res Rev, 72(3), 324-337. NHS England. (2019). The NHS Long Term Plan.
Cullington, Helen
a8b72e6d-2788-406d-aefe-d7f34ee6e10e
Southern Counties Cochlear Implant Support Group
Cullington, Helen
a8b72e6d-2788-406d-aefe-d7f34ee6e10e

Cullington, Helen , Southern Counties Cochlear Implant Support Group (2019) The role of social media peer support in cochlear implant care. British Cochlear Implant Group Meeting 2019: Connecting for Life, Solent Conference Centre, Southampton, United Kingdom. 04 - 05 Apr 2019.

Record type: Conference or Workshop Item (Paper)

Abstract

Aim: People with cochlear implants need lifelong support with their device for equipment, tuning, hearing checking, rehabilitation and any medical issues arising. Cochlear implant centres effectively provide care, but often in a clinic-centred way – regular review appointments rather than patient-led follow-up. The NHS Long term plan (NHS England, 2019) promises to increase support for people to manage their own care; engaged and empowered patients have better health outcomes (Hibbard, Greene, Shi, Mittler, & Scanlon, 2015). Social media has become an inescapable part of our lives – vital, distracting, infuriating, reassuring … (insert almost any adjective here, depending on the situation!). However emerging research is demonstrating significant advantages of social media for peer support in health conditions. The three domains of person-centred care, social media, and the internet are combining with powerful consequences, and have potential to create a seismic shift in how patients and clinics interact (Rozenblum & Bates, 2013). 
Method: The Southern Counties CI Group (SoCo) is a social group for people in the UK and Ireland, particularly from the USAIS area (Dorset, Hampshire, Wiltshire, Sussex) who have a cochlear implant or who are in the process of finding out about cochlear implants. SoCo has had an active Facebook group with nearly 200 members and multiple daily posts. Some people with cochlear implants may not wish to burden their loved ones with concerns, or may even receive unhelpful advice (albeit well-intentioned) from family members. Understandably, there are aspects of living with a cochlear implant that cannot be understood by someone who does not use an implant, and so much is gained from interacting with people ‘in the same boat’. Results: Benefits of social media peer support in general include accessing timely information, gaining confidence, improved self-management and empowerment, enhanced wellbeing, the feeling of ‘paying it forward’, more equal relationship with healthcare provider, and becoming expert partners in their care. Several members of the SoCo group will present this topic – describing the benefit they personally have received from peer support and any concerns they have with sharing information online.
Conclusion: Social media is not going away, and is being used by more and more people with cochlear implants. A peer support group has a vital place in the long-term support of people with implants, and should be acknowledged and supported by clinicians. Social media, the internet, and person-centred care look set to change the landscape of healthcare provision in the future. Reference (If applicable) Rozenblum, R., & Bates, D. W. (2013). Patient-centred healthcare, social media and the internet: the perfect storm? BMJ Qual Saf, 22(3), 183-186. Hibbard, J. H., Greene, J., Shi, Y., Mittler, J., & Scanlon, D. (2015). Taking the long view: how well do patient activation scores predict outcomes four years later? Med Care Res Rev, 72(3), 324-337. NHS England. (2019). The NHS Long Term Plan.

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More information

Published date: April 2019
Venue - Dates: British Cochlear Implant Group Meeting 2019: Connecting for Life, Solent Conference Centre, Southampton, United Kingdom, 2019-04-04 - 2019-04-05

Identifiers

Local EPrints ID: 430308
URI: http://eprints.soton.ac.uk/id/eprint/430308
PURE UUID: 7fa7641d-e4a5-4f51-a883-3a27624368ea
ORCID for Helen Cullington: ORCID iD orcid.org/0000-0002-5093-2020

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Date deposited: 25 Apr 2019 16:30
Last modified: 13 Dec 2021 02:59

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Contributors

Corporate Author: Southern Counties Cochlear Implant Support Group

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