Health-related quality of life: implications for critical care interventional studies and why we need to collaborate with patients.

Purpose of review: Health-related quality of life (HRQoL) is an important patient-reported outcome measure following critical illness. ‘Validated’ and professionally endorsed generic measures are widely used to evaluate critical care intervention and guide practice, policy and research. Although recognizing that they are ‘here to stay’, leading QoL researchers are beginning to question their ‘fitness for purpose’. It is therefore timely to review critiques of their limitations in the wider healthcare and social science literatures and to examine the implications for critical care research including, in particular, emerging interventional studies in which HRQoL is the primary outcome of interest. Recent findings: Generic HRQoL measures have provided important yet limited insights into HRQoL among survivors of critical illness. They are rarely developed or validated in collaboration with patients and cannot therefore be assumed to reflect their experiences and perspectives. Summary: Collaboration with patients is advocated in order to improve the interpretation and utility of such data. Failure to do so may result in important study effects being overlooked and the dismissal of potentially useful interventions.

Participation Space Studies: a socio-technical exploration of activist and community groups’ use of online and offline spaces to support their work

Participation Space Studies explore eParticipation in the day-to-day activities of local, citizen-led groups, working to improve their communities. The focus is the relationship between activities and contexts. The concept of a participation space is introduced in order to reify online and offline contexts where people participate in democracy. Participation spaces include websites, blogs, email, social media presences, paper media, and physical spaces. They are understood as sociotechnical systems: assemblages of heterogeneous elements, with relevant histories and trajectories of development and use. This approach enables the parallel study of diverse spaces, on and offline. Participation spaces are investigated within three case studies, centred on interviews and participant observation. Each case concerns a community or activist group, in Scotland. The participation spaces are then modelled using a Socio-Technical Interaction Network (STIN) framework (Kling, McKim and King, 2003). The participation space concept effectively supports the parallel investigation of the diverse social and technical contexts of grassroots democracy and the relationship between the case-study groups and the technologies they use to support their work. Participants’ democratic participation is supported by online technologies, especially email, and they create online communities and networks around their goals. The studies illustrate the mutual shaping relationship between technology and democracy. Participants’ choice of technologies can be understood in spatial terms: boundaries, inhabitants, access, ownership, and cost. Participation spaces and infrastructures are used together and shared with other groups. Non-public online spaces, such as Facebook groups, are vital contexts for eParticipation; further, the majority of participants’ work is non-public, on and offline. It is informational, potentially invisible, work that supports public outputs. The groups involve people and influence events through emotional and symbolic impact, as well as rational argument. Images are powerful vehicles for this and digital images become an increasingly evident and important feature of participation spaces throughout the consecutively conducted case studies. Collaboration of diverse people via social media indicates that these spaces could be understood as boundary objects (Star and Griesemer, 1989). The Participation Space Studies draw from and contribute to eParticipation, social informatics, mediation, social shaping studies, and ethnographic studies of Internet use.