Table 1.
Glossary of Terms Used in the Study
| Term | Definition\conceptualization |
|---|---|
| Online health community | Websites that provide a means for patients and their families to learn about an illness, seek and offer support, and connect with others in similar circumstances17 |
| Example: patientslikeme.com, dailystrength.org | |
| Thread | Online communities are subdivided into broader topics. Within each topic, a new discussion can be started by a user and responded to by many other users. Each new discussion that is started is called as a thread18 |
| We conceptualized each thread as a “virtual group” formed to provide support to the support seeker. The support seeker is a patient who started a thread by posting some text that seeks support | |
| Social support | Social support refers to “information leading the subject to believe that he is cared for and loved, esteemed, and a member of a network of mutual obligations.”19 It is formed by the exchange of resources including verbal and nonverbal messages between 2 or more individuals.20 Social support as a strategy to cope with stress, and improve behavioral, psychological, and physiological outcomes is well established in the public health, clinical psychology, and sociology literatures. By either directly integrating the receiver of support into a social network or by indirectly affording interpersonal resources to the receiver, social support affects health outcomes.21,22 |
| Support Seeker | A user of the online health community who posted a question. We denoted the support seeker as (i) |
| Support Provider | Support providers are all online health community members who responded to a support seeker’s question in a thread. We denoted support providers as (j). |
| Definition and conceptualization of variables in our model | |
| Self-care Behavior | The range of activities individuals undertake to enhance health, prevent disease, evaluate symptoms, and restore health5 |
| Conceptualization: | |
| Expression of self-care behavior by the support seeker in all his/her subsequent response after he/she initiated a thread | |
| Objective Information | Objective information refers to receiving primarily factual information related to a particular disease condition and its management.23 Objective information can be received by a patient suffering from a particular disease condition from a number of stakeholders in the healthcare ecosystem including healthcare professionals, family members, and friends (who may do some research on a particular disease and share information with their loved ones), and other patients also suffering from that same disease. |
| Conceptualization: | |
| All the objective information a support seeker receives from community members in response to his/her question in a thread | |
| Experiential Information | Experiential information refers to receiving information about actual experiences and insights of and the strategies used by patients suffering from the same disease as the focal patient.8 Obviously, this type of information can only be provided by other patients suffering from the same disease condition and not by other stakeholders in the healthcare system. This type of support can focus on either the experiences pertaining to the disease and its symptoms or on experiences pertaining to treatment and management of the disease |
| Conceptualization: | |
| All the experiential information a support seeker receives from community members in response to his/her question in a thread | |
| Emotional Tone | Emotional tone is essentially psychosocial support received by a patient suffering from a chronic disease condition that is provided by the giver with the intent to provide care, cheer, comfort, and relief to the patient to enable him/her to cope with the symptoms of his/her chronic disease and to engage effectively in the self-care of the disease condition.24,25 |
| Conceptualization: | |
| Emotional tone from all the replies a support seeker receives from community members in response to his/her question in a thread | |
| Community Involvement | Community involvement is the extent to which online community members participate in a thread. Community involvement is closely related to the companionship one would typically get with offline friends through chatting, group meetings, and other social activities.4 We considered community involvement as another dimension of emotional support because it denotes the intimacy and the emotional attachment the community members have towards the online health community and its support seekers |
| Conceptualization: | |
| Number of unique community members who reply to a support seeker in response to his question in a thread | |