A thematic analysis of patient communication in Parkinson’s disease online support group discussion forums

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Abstract

Online support groups have become a popular source of information, advice and support for individuals living with a range of health conditions. However, research has not commonly focused on patients living with Parkinson’s disease and their use of online support groups. Thus, the aim of this study was to gain an insight into the positive and negative aspects of online communication through an analysis of messages exchanged within Parkinson’s disease discussion forums. Data was collected from four forums and analysed using data-driven thematic analysis. The results revealed that participation in the forums allowed patients to share experiences and knowledge, form friendships, as well as helping them cope with the challenges of living with Parkinson’s disease. Conversely, a lack of replies, the experience of Parkinson’s disease symptoms, a lack of personal information, fragility of online relationships, misunderstandings and disagreements, all appeared to compromise the online experience. Practical implications and future research recommendations are proposed.

Highlights

► We explore the online experiences of individuals living with Parkinson’s disease. ► We thematically analyse messages on the forums of four online support groups. ► Both positive and negative features of online support are experienced by members. ► Online forum support may complement traditional forms of support.

Introduction

Parkinson’s disease (PD) is a chronic, neurodegenerative disorder which develops in approximately one in 500 of the global population (Parkinson’s UK, 2010). Support is a fundamental part of accepting and living with the disease because apart from extensive physical restrictions caused by tremors, bradykinesia, rigidity and disturbed gait, patients are faced with many psychosocial stressors (Lieberman, 2008). It is psychologically demanding for patients to deal with the unpredictability of Parkinson’s disease and the inevitable deterioration of their physical and mental condition (Charlton & Barrow, 2002). Patients will eventually lose their independence and control over their life and body (Trail, Protas, & Lai, 2008). This may lower their self-esteem, create apprehension about the future and prevent patients from accepting their changing selves (Wressle, Engstrand, & Granérus, 2007). Feelings of apathy may also grow and this may limit the extent to which they feel satisfied with their lives (Friedman, 2008).

Sometimes patients also have to deal with society’s misconceptions about the disease (Moore & Knowles, 2006). For instance, people may misinterpret patients’ reduced facial expressions as signs of ineptness or unfriendliness (Stanley-Hermanns & Engebretson, 2010). Therefore, patients may feel embarrassed about their symptoms (Wressle et al., 2007) and withdraw from society since interaction within their daily social networks may make Parkinson’s disease more difficult to deal with (Nijhof, 1995). Consequently, these psychosocial stressors may lead to depression which is prevalent in 40–50% of patients (Pirtosek, 2007).

Supporting patients with Parkinson’s disease is crucial, particularly as no cure has yet been identified (Friedman, 2008). Face-to-face support groups have been a long-standing form of psychosocial support for this clinical population and may help patients to accept their situation, develop coping skills and thus enhance both self-esteem and emotional well-being (Trojan, 1989). Indeed, when compared with non-members, patients who access professional or member-led support groups have shown greater acceptance of the disease and are better able to cope with its challenges (Charlton & Barrow, 2002).

With the rise of the Internet, online support groups for various health conditions have become abundant, with 36 million people accessing them worldwide in 2004 (Pew Research Centre, 2005). Members can communicate with each other either synchronously through chat rooms or asynchronously via emails, or discussion forums. The discussion forum is one of the most popular means through which patients can interact with each other online and this will be the focus of the present study. Discussion forums work when one person writes a message (or post) which is answered by other members. The collection of posts related to one subject forms a conversation ‘thread’ (Cummings, Sproull, & Kiesler, 2002).

A growing number of studies have analysed posted messages to investigate the nature of forum interaction, particularly in relation to the provision of social support. Indeed, informational and emotional support has been shown to be frequently offered online as well as, esteem, network and tangible support, although to a lesser degree (Coulson, Buchanan, & Aubeeluck, 2007). In addition, a number of questionnaire or interview studies have been conducted to explore from the patient’s perspective how online support groups may impact on their illness experience. Together, these two avenues of research have identified a range of advantages and disadvantages associated with their use. However, apart from Lieberman et al. (2005b), there has been little attention given to exploring Parkinson’s disease online support forums.

With the rise in popularity of online support groups, there is a clear need to explore the experiences of members in Parkinson’s disease forums. Thus far, little attention has been given to this illness and whilst there is some limited evidence (e.g. Lieberman et al., 2005b), we know little about either the positive or negative aspects of this form of supportive communication in this disease context. In order to redress this, the present study seeks to explore the experiences of Parkinson’s disease forum users and will do this by undertaking a qualitative analysis of messages posted to forums. The use of forum messages as a data source has been used in previous studies of online support (e.g. Coulson et al., 2007) and they provide a unique insight into the experiences of users.

Section snippets

Sample

Parkinson’s disease online support groups which had discussion forums were identified through the Google search engine using several keywords: Parkinson’s disease, online/internet support group, message board and forum. Four online support groups were identified, with the oldest online support group established in 1957 and the newest one established in 2007. Some groups were specifically dedicated to Parkinson’s disease, whilst others had forums for a range of conditions which included

Results

Six major themes, each with their respective subthemes, were identified from the dataset. The first three themes highlighted the positive aspects of the peer to peer communication in the Parkinson’s disease forums and the second three illustrated the negative aspects.

Discussion

To date, little attention has been devoted to understanding the online experiences of individuals living with Parkinson’s disease and their use of online support group forums. The present study analysed a sample of messages posted to four Parkinson’s disease discussion forums and yielded six themes which reflected members’ positive and negative experiences.

It was apparent that all the positive themes and subthemes were abundant throughout the messages posted on each of the four forums. In fact

Conclusion

The findings of this study suggest that there are both positive and negative features of online support as experienced by members with Parkinson’s disease. In particular, the interaction between peers may provide a unique perspective and understanding that is hard to achieve in the offline world. Thus, online support may be a useful adjunct to traditional forms of support.

Acknowledgments

The research work disclosed in this publication is partially funded by the Strategic Educational Pathways Scholarship Scheme (Malta). The scholarship is part-financed by the European Union – European Social Fund (ESF) under Operational Programme II – Cohesion Policy 2007–2013: ‘Empowering People for More Jobs and a Better Quality of Life’.

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