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. 2020 Jun 23;22(6):e18185. doi: 10.2196/18185

Table 2.

Themes.

Themes Subthemes
Motivation

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


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


Feeling rewarded through helping
  • Positive feeling when helping others

  • Replacement of role


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

Awareness of the limits of peer self-management support

Decisions on posts to reply to
  • Drawing from personal experience

  • Providing a different point of view


Types of support offered
  • Behavioral and emotional peer self-management support

  • Empowering patients and carers through own experience

  • Signposting to source information and support


Medical self-management needs HCPs’a input
  • Showing appropriate insight of potentially serious medical issues

  • Advising to seek medical help with appropriate urgency

Challenges

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


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


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

HCPs and asthma OHCs

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


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


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


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

aHCP: health care professional.

bOHC: online health community.

cLTC: long-term condition.