Motivation
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Seeking information and support |
Gaining knowledge about asthma illness and its treatment
Validation of own experiences in the context of asthma
Feeling less isolated
Talking with fellow sufferers
Enjoying reading conversations of users one got to know
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Helping others |
Giving advice that could potentially save a life
Supporting others with asthma and their carers
Making people with asthma and their carers feeling less isolated
Show others that living with chronic conditions is not always negative
Making sure people with asthma take their disease seriously
Disseminating of scientific information
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Feeling rewarded through helping |
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Financial or social recognition not important |
Not important: reward is helping others, enjoying interactions
Not important: all users shall be equal with equal voice importance
Not important: voluntary nature—financial incentives potentially causing misuse
Unsure/yes important: recognition of sensible/knowledgeable users
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Awareness of the limits of peer self-management support
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Decisions on posts to reply to |
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Types of support offered |
Behavioral and emotional peer self-management support
Empowering patients and carers through own experience
Signposting to source information and support
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Medical self-management needs HCPs’a input |
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Challenges
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Top 3 problems and difficulties encountered |
Worrying about users struggling with asthma and not seeking medical help as appropriate
Misunderstanding, spam, miracle cures, or dangerous ideas
Negative tone of some conversations
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Posts causing superusers’ worries |
Religion-based advocacies; derogatory, emotionally challenging posts
Offering bad advice or indicating that users have little knowledge about asthma and its gravity
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Need of additional policies and guidance |
Improve awareness of existing policies and guidance for safe engagement with asthma OHCsb
Policies and guidance about buying asthma medications on the web
Quicker removal of bad posts/advice
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HCPs and asthma OHCs
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HCPs’ awareness of engagement with asthma OHCs |
Engagement with asthma OHCs is not discussed during consultations with HCPs
Engagement with asthma OHCs is not discouraged by HCPs
HCPs’ belief that engagement with asthma OHCs focuses patients on illness and potentially increases their anxiety
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HCPs’ promotion of engagement with OHCs |
HCPs should direct patients with LTCsc to moderated/trusted OHCs
Advantage is obtaining behavioral and emotional self-management support that HCPs may not be able to offer
Ways of promotion: posters up in the waiting rooms of relevant hospital departments and General Practice (GP) surgeries and face-to-face discussion of OHC information by nurses during asthma clinics
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Suggestions to reassure HCPs about OHC engagement |
Clearer statements about contacting HCPs for medical self-management
Improving HCPs’ awareness of benefits of online peer support; robust evaluation of the effects of OHC engagement
Readily accessible guidance about keeping safe in social media
Clear rules about posting activity; regular, nonintrusive participation of moderators
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HCPs’ participation in OHCs |
Benefits: for the opportunity to get worries and questions addressed, as long as HCPs’ identity is stated
Difficulties: potential scrutiny of all posts, limitation of expression of different points of view, lack of sufficient clinical details, and issues with code of conduct of HCP registering bodies
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