Exploring the experiences of individuals with head and neck cancer using online support groups

Objectives: Head and neck (HN firstly, to assess the types of social support, sought and offered, within OSGs for H&N cancer. Secondly, to explore the relationship between using OSGs and QoL and examine the psychosocial factors that may influence this relationship and, thirdly, to explore, in depth, the OSGs experiences of people with H&N cancer. Methods: Two studies are reported in this thesis: Study 1 was a content analysis of posted messages within H&N cancer-OSGs. A total of 312 support-offering messages and 87 support-seeking messages (in a one year period) were randomly selected from 18 H&N cancer OSGs. The content of the support-offering messages were analysed using a modified version of Social Support Behaviour Code and the content of the support-seeking messages were analysed using a modified version of the Coursaris and Liu coding scheme. Study 2 was a cross-sectional study consisting of two parts; the first was an online questionnaire using six pre-validated measures for social network, self-efficacy, anxiety and depression, adjustment, empowerment and quality of life. In addition, socio-demographic as well as illness-related and OSGs-related information were collected. This questionnaire was completed by 199 persons with H&N cancer using four OSGs within a 6 month period. The second part of Study 2 was an unstructured online interview in which, 30 people from the previous 199 were interviewed synchronously online using Facebook, Email, Skype, Yahoo messenger and MSN, and a narrative thematic experience analysis was conducted on the data. Results: The content analysis of Study 1 showed that the most frequently offered types of social support by members of OSGs were informational (43.4%) and emotional (32.4%), followed by esteem (15.65%) and network support (6.04%), whereas little tangible assistance was offered (2.47%). The content of messages seeking support included OSGs members sharing personal experience (31.52 %), with the most frequently sought support being informational support (25.54 %). In the quantitative part of Study 2 a series of multiple linear regression analyses indicated that longer use of OSGs was related to better QoL (p= 0.02), and lower levels of depression and anxiety, lower endorsement of negative adjustment behaviour (p = 0.00 for each), greater self-efficacy (p = 0.02) and higher levels of empowerment (p = 0.01). Additional analysis of mediation effects suggested that depression and adjustment were direct mediators of the relationship between OSGs and QoL, whilst anxiety, self-efficacy and empowerment were indirect mediators. The narrative thematic analysis of the qualitative part of Study 2 showed that one main theme emerged (Trust) which included four subthemes: (1) distrust, (2) institutional trust, (3) identification based and relational trust (4) power relationships and normalisation. Conclusion: The advantages of cancer related-OSGs appear to be inclusive; regardless of location, access, availability or user characteristics. The results of the studies tentatively suggest that OSGs could benefit H&N cancer patients by providing support and information related to their condition, enhance empowerment processes and patient’s beliefs in their control over their H&N cancer, as well as reduce anxiety, depression, and negative adjustment behaviours and subsequently improve quality of life. Moreover, these results support previous research on other types of cancer in importance of trust in managing online relationships and further emphasises the complexity of online social relationships.