A longitudinal qualitative exploration of healthcare and informal support needs among survivors of critical illness: the RELINQUISH protocol

Abstract

Introduction and backgroundSurvival following critical illness is associated with a significant burden of physical, emotional and psychosocial morbidity. Recovery can be protracted and incomplete, with important and sustained effects upon everyday life, including family life, social participation and return to work. In stark contrast with other critically ill patient groups (eg, those following cardiothoracic surgery), there are comparatively few interventional studies of rehabilitation among the general intensive care unit patient population. This paper outlines the protocol for a sub study of the RECOVER study: a randomised controlled trial evaluating a complex intervention of enhanced ward-based rehabilitation for patients following discharge from intensive care.Methods and analysisThe RELINQUISH study is a nested longitudinal, qualitative study of family support and perceived healthcare needs among RECOVER participants at key stages of the recovery process and at up to 1 year following hospital discharge. Its central premise is that recovery is a dynamic process wherein patients' needs evolve over time. RELINQUISH is novel in that we will incorporate two parallel strategies into our data analysis: (1) a pragmatic health services-oriented approach, using an a priori analytical construct, the ‘Timing it Right’ framework and (2) a constructivist grounded theory approach which allows the emergence of new themes and theoretical understandings from the data. We will subsequently use Qualitative Health Needs Assessment methodology to inform the development of timely and responsive healthcare interventions throughout the recovery process.Ethics and disseminationThe protocol has been approved by the Lothian Research Ethics Committee (protocol number HSRU011). The study has been added to the UK Clinical Research Network Database (study ID. 9986). The authors will disseminate the findings in peer reviewed publications and to relevant critical care stakeholder groups.

‘Intensive care unit survivorship’ – a constructivist grounded theory of surviving critical illness

“…Inclusion and exclusion criteria are identical in both studies (Table ) and study protocols have been published elsewhere (Ramsay et al . , Walsh et al . ).…”

Intensive care discharge summaries for general practice staff: a focus group study

“…Alongside specialist critical care services, GP staff (GPs and practice nurses) have ongoing responsibility for monitoring and managing health following hospital discharge 6 , 11. Communication across the secondary– primary care interface is, however, often inadequate;10 , 12 , 13 patients discharged home following critical illness report that GPs have little understanding of their needs or those of their families 14. Kahn and Angus suggest that this may be because GP staff are unaware of events that occurred in the Intensive Care Unit (ICU) 15…”

Life after critical illness: an overview

“…Our understanding of the everyday difficulties and challenges faced by survivors is relatively limited (Ramsay et al . ), and there is a lack of longitudinal qualitative research in this area. Patients may use a range of strategies to help them make sense of being critically ill to adapt and adjust to what has been a major life event.…”

“…Some survivors face a prolonged burden of ill health that includes both physical and psychological problems, which may have sustained impact upon everyday life including social functioning and family life (Ramsay et al . ). The recognition of these short‐ and long‐term consequences has led us to view critical illness as a continuum that starts with the onset of acute deterioration or traumatic event prior to admission and continues some time after hospital discharge.…”