Phd thesis abstract:
This portfolio thesis comprises of three parts.
The first part is a systematic literature review, in which empirical literature relating to the use of Facebook groups in health conditions is explored. It aims to provide an understanding of how individuals with health conditions use Facebook groups. The review concludes with recommendations for future research.
Part two is an empirical report of a study that used a qualitative approach of content analysis to explore the use of Facebook groups by those with a diagnosis of Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (M.E.). Participants completed an online survey and data was extracted from a single Facebook group. Results were considered in relation to the Shifting Perspectives Model of Chronic Illness (Paterson, 2001). Methodological limitations, potential clinical implications and areas of future research are also identified.
Part three comprises the appendices and reflective statement. These include a statement reflecting on the research process and supplementary information pertaining to the literature review and empirical study.
6.2. Discussion
Given that CFS/ME online forums have more than ten times the relative activity of any other disorder or condition related forum, and the concerns around whether this affected their symptoms (Knudsen et al., 2012), this study aimed to explore the function Facebook groups serve in relation to the Shifting Perspectives Model of Chronic Illness (Paterson, 2001) and the experience of those who use them.
The results highlighted aspects of Facebook groups which were considered to be helpful and not so helpful. The accessibility of Facebook was considered as both a positive and a negative, due to its easy access and the resulting reduction in social isolation, however concerns were raised around the inability to avoid distressing posts. The accessibility of Facebook is a factor which may result in differences between other online forums and the Facebook groups. It is considered that this may result in Facebook being more active than other forums, and may also result in the perception of a more intimate network of support due to the likelihood of most individuals utilising the group inadvertently sharing information about themselves through their profile (dependent on their own privacy settings).
Support, of both an emotional and practical nature was considered to be helpful in the groups in varying forms, with participants being positive about their experience in the groups.
The group dynamics, content of posts, and the impact using Facebook could have on ‘real life’ were considered to be factors which were not so helpful about Facebook.
The analysis of the Facebook posts identified that the most prevalent type of posts were
individuals sharing experiences or asking for advice. The concept of sharing experiences was considered further and entailed individuals relating symptoms, updating the group and sharing their frustrations with having the condition.
The content of the posts could be considered to be of a nature which would increase
symptoms, as may be expected by the health anxiety model (Salkovskis & Warwick, 1986), and may be considered to result in individuals focusing on illness. Given the unknown aetiology, the stigma of CFS/ME and the Shifting Perspectives Model of Chronic Illness (Paterson, 2001) however, it was considered that these posts may serve a more positive function.
In relation to the consideration of the Shifting Perspectives Model of Chronic Illness
(Paterson, 2001), it could be suggested that Facebook groups serve a function to gain the wellness perspective. Paterson (2001) suggested that individuals gain the wellness perspective through education about their illness, being in supportive environments,
identifying their own limits and body responses and sharing their knowledge and experiences with others, and the findings of this study suggest that the Facebook groups are used for this purpose. It may be however, that due to the lack of understanding around the aetiology and treatments of the condition, and the conflicts these can cause
within the Facebook groups, there may be a risk of perspective being one of illness.
The majority of respondents to the survey felt the Facebook group helped them focus on
being well, despite posts appearing to focus on the illness, or seemed to recognise the
potential of their perspective to fluctuate depending on group content.
A thematic analysis of the Facebook posts identified four main themes which highlighted the experiences of those individuals with CFS/ME and may provide insight into what Facebook groups provide for these individuals; a space to share feeling overwhelmed and misunderstood and to receive an develop a sense of hope and understanding in relation to the condition. A consideration of this may provide professionals with an insight into the areas where individuals with CFS/ME may require additional support.
Furthermore, it has been identified that a perceived lack of skill to manage the illness,
stigma, and interactions which accentuate feelings of hopelessness or dependency, may
threaten a shift from WitF to IitF, however little evidence has been found to suggest the
Facebook groups result in these threats, rather they provide an arena to support
prevention of this.
The group considered was highly monitored, with posts which may have caused distress or offence to other members being deleted and those involved being removed from the group. This may be an example of the online C effect (Suler, 2004) whereby people may act in ways they would not in real life. Results from the survey suggest that this is not an uncommon experience. Therefore whilst the potential risk of these posts is diminished in this group, it may not be the case in others.
Furthermore, given the offensive responses received by the researcher within the survey, it may be that online disinhibition effect (Suler, 2004) is something which needs consideration in relation to the impact of individuals who are targeted within these groups.
Additional Observations
Whilst the research was considered positively by the majority of individuals in the facebook groups for CFS/ME, a number of individuals raised their concerns that Psychiatry and Psychology were considering their condition, with participants responding to the survey; “Would you do a similar analysis of support groups for diabetes, HIV, MS, lupus? Or is it because you think CFS/ME is in our heads?”
Research has been completed on conditions such as Diabetes (Greene, Choudhry,
Kilabuk & Shrank, 2010; Zhang, He & Sang, 2012), although these have only been
observational in nature and not included participants. The inclusion of participants
however has been a recommendation by a number of studies which have considered the use of Facebook groups for health conditions (Ahmed, Sullivan, Schneiders & McCrory, 2010; Niwa & Mandrusiak, 2012; Zhang, He & Sang, 2012).
Throughout the study there was a strong theme around a lack of support from, and trust towards, professionals, particularly the psychology and psychiatry professions. As this was not the focus of this particular study it has received little attention, however future
exploration around this may be of benefit to professionals working to support those with
CFS/ME.
Limitations
A limitation of this study, and potentially for future research when advertising on groups within Facebook, is the rate at which the post advert was quickly replaced with newer posts and a systematic approach to ‘boosting’ the post to be prominent in the group was not in place. As a result, despite being advertised for a 2 month period, it may only have been visible to the group members for a few days at a time.
The analysis of the online survey was completed on the full data set, rather than for each
individual survey response. It may be that treating each survey response as an interview, using an Interpretive Phenomenological Analysis approach (Smith, Flowers & Larkin, 2009) would have provided further understanding and the data may be reanalysed at a later date to consider this.
The Shifting Perspectives Model of Chronic Illness (Paterson, 2001) felt appropriate for
use within the study, however, as a model this may need further development as the
process of identifying the perspectives was unclear and greatly interpreted by the researcher. Furthermore, due to the emotive responses, and lack of understanding of the
model by those who completed the survey, some answers were difficult to analyse. Further consideration may need to be given to making the model more accessible to those partaking in research around this area.
It may be considered a limitation that the survey was completed online rather than in person as an interview, as this results in a loss of understanding which one might attain
from body language or intonations, however, given the theory of online disinhibition effect (Suler, 2004), the survey, which also provided anonymity, may have provided the participants with the arena to speak more openly and truthfully.
As previously highlighted, the online survey evoked some offensive responses from
participants which have provided an insight into the emotions some individuals with CFS/ME hold and may be of interest in relation to engaging this population.
Conclusions
The results of this study suggest that Facebook groups for CFS/ME have some potential
risks associated with them, however these may not be of any greater concern than those
posed to a member of any Facebook group. Rather, the Facebook groups seem to provide individuals with a perspective of wellness in the foreground by providing a shared experience and understanding which, potentially due to the current unexplained cause of the condition, is considered to be lacking in the ’real world’.
An exploration into the use of Facebook groups for health conditions, by Gerri Elizabeth Moxon, University of Hull Phd thesis, 27 Aug 2015
