BackgroundThe availability of an increasing number of online health forums has altered the experience of living with a health condition, as more people are now able to connect and support one another. Empathy is an important component of peer-to-peer support, although little is known about how empathy develops and operates within online health forums.ObjectiveThe aim of this paper is to explore how empathy develops and operates within two online health forums for differing health conditions: breast cancer and motor neuron disease (MND), also known as amyotrophic lateral sclerosis.MethodsThis qualitative study analyzed data from two sources: interviews with forum users and downloaded forum posts. Data were collected from two online health forums provided by UK charities: Breast Cancer Care and the Motor Neurone Disease Association. We analyzed 84 threads from the breast cancer forum and 52 from the MND forum. Threads were purposively sampled to reflect varied experiences (eg, illness stages, topics of conversation, and user characteristics). Semistructured interviews were conducted with 14 Breast Cancer Care forum users and five users of the MND forum. All datasets were analyzed thematically using Braun and Clarke’s six-phase approach and combined to triangulate the analysis.ResultsWe found that empathy develops and operates through shared experiences and connections. The development of empathy begins outside the forum with experiences of illness onset and diagnosis, creating emotional and informational needs. Users came to the forum and found their experiences and needs were shared and understood by others, setting the empathetic tone and supportive ethos of the forum. The forum was viewed as both a useful and meaningful space in which they could share experiences, information, and emotions, and receive empathetic support within a supportive and warm atmosphere. Empathy operated through connections formed within this humane space based on similarity, relationships, and shared feelings. Users felt a need to connect to users who they felt were like themselves (eg, people sharing the same specific diagnosis). They formed relationships with other users. They connected based on the emotional understanding of ill health. Within these connections, empathic communication flourished.ConclusionsEmpathy develops and operates within shared experiences and connections, enabled by structural possibilities provided by the forums giving users the opportunity and means to interact within public, restricted, and more private spaces, as well as within groups and in one-to-one exchanges. The atmosphere and feeling of both sites and perceived audiences were important facilitators of empathy, with users sharing a perception of virtual communities of caring and supportive people. Our findings are of value to organizations hosting health forums and to health professionals signposting patients to additional sources of support.

PATHOS is a phase II/III randomized controlled trial (RCT) of risk-stratified, reduced intensity adjuvant treatment in patients undergoing transoral surgery (TOS) for human papillomavirus (HPV)-positive oropharyngeal squamous cell carcinoma (OPSCC). The study opened in the UK in October 2015 and, after successful recruitment into the phase II, transitioned into phase III in the autumn of 2018. PATHOS aims to establish whether the de-intensification of adjuvant treatment in patients with favorable prognosis HPV-positive OPSCC will confer improved swallowing outcomes, whilst maintaining high rates of cure. In this article, we will outline the rationale for the study and how it aims to answer fundamentally important questions about the safety, effectiveness and functional outcomes of minimally invasive TOS techniques followed by adjuvant radiotherapy (RT) or chemo-radiotherapy (CRT) in this patient population.

Our study shows the survival benefit seen in the phase III trial is reproducible in clinical practice. In addition, decreased platelet count during concurrent radiotherapy and temozolomide appears to correlate with prolonged survival, a finding that warrants further investigation.

PurposeThis paper both supports previous findings relating to, and presents new insights into: the information needs and the information seeking processes of a sample of informal caregivers of people with dementia (in relation to their own needs and the interrelated needs of the people they are caring for); the extent to which such information needs are and are not being met; and the factors facilitating and hindering access to the right information.Design/methodology/approachThe study adopted a qualitative approach in the form of a thematic analysis of in-depth, semi-structured interviews with a sample of 20 informal caregivers from a range of different age groups, genders and caring roles.FindingsThematic analysis identified significant informational challenges, with a common perception that information seeking was onerous, requiring a proactive approach. Further challenges arose from a perceived lack of focus on carer needs coming up against the boundaries of professional knowledge and inconsistent information provision across the sample. Distance carers faced specific issues. A second theme of negative impacts described burdens arising from: difficulties in accessing information from a complex array of support services closure or change in services and unfulfilled information needs. Participants employed strategies to enable access to information, for example, being open about their caring role; and building formal or informal support networks. It is important to address emotional as well as cognitive dimensions of information needs.Practical implicationsThis research highlights a need for health and social care, practice and policy to acknowledge and address information needs of this diverse population and build resilience. Above all, information seeking and sharing must be understood within the context of the emotional impact of caring, and recognition of these twin needs is crucial.Originality/valueWhilst previous research has focussed on identifying specific needs and knowledge acquisition at cross-sections, a more holistic understanding of experiences is underexplored. This approach is needed to take into account broader contexts, diversity of experiences and different caring roles, e.g. primary and secondary carers, and in situ and distance carers.

PurposeThis paper provides new insights on trust formation during information-seeking processes of informal caregivers of people with dementia and identifies the sources of information deemed as trustworthy by caregivers.Design/methodology/approachThe study adopts a phenomenological qualitative approach in the form of in-depth, semi-structured interviews with a sample of 20 informal caregivers.FindingsCaregivers trust sources that are perceived as authoritative and particularly value the information and advice provided by other caregivers. Trust in information can be divided into subjective and objective, but both are important precursors to the actual use of the information. The information available to caregivers is sufficient in quantity but inadequate in terms of ease of use, clarity and usefulness. Often, some key information needs remain unsatisfied due to the lack of timeliness, relevance and personalisation of the information.Practical implicationsThis paper provides recommendations for information and healthcare providers on how to improve communication and information relevance for informal caregivers of people with dementia.Originality/valueThis paper contributes to a more comprehensive perspective on caregivers’ information trust formation processes, which takes into account both the characteristics of the information and caregivers’ individual factors.