‘Patient information provision and involvement of patients by stroke professionals: implications for the patient-provider relationship’

Abstract

Despite significant moves to inform and involve patients in their care, implementation of this vision has only been achieved with limited success. Part of the problem appears to stem from an insufficient consideration of the processes underpinning patient participation in the first instance. To help resolve this, we ask what factors drive the patient information provision and participation processes and how these factors have their impact. A significant barrier to the improvement of patient information and empowerment is the incomplete understanding of the interaction between patients and health professionals – commonly termed the patient-provider relationship (PPR). We argue that the PPR has not been fully developed in the context of stroke care specifically and we therefore propose a revised framework for understanding the nature of the patient-provider interaction, specific to stroke care. The new framework more realistically conveys the context for stroke care services in the UK today. The work first evaluates the research literature on the PPR in general, before focusing on the PPR in the acute phase of stroke care. We therefore place stroke care in the context of what is already theorised about the PPR. Based on the results from 50 semi-structured telephone interviews with stroke professionals, we then propose that a revision of our understanding of stroke PPR is needed to more fully take into account the dynamic external influences acting upon it. The general analytical approach is an inductively driven constant comparative method of qualitative analysis, conducted in line with grounded theory. Significant findings include: (i) the provider may no longer be the most important source of information for the patient within a revised stroke PPR model; (ii) stroke physicians reported cases involving lucid patients refusing thrombolytic treatment. Studies reporting stroke patients playing active, participatory roles in acute decision making do not appear in the literature and policymakers have tended to assume that the involvement of patients should only begin after the hyper-acute stages of care have passed. The findings here challenge this position and suggest that participation in decision-making during the hyper-acute phase is feasible and should be considered in clinical practice and policy making. Further, stroke care policy and practice recommendations arising from the study include: (i) greater consideration needs to be given to the allocation of resources designed to psychologically support stroke patients, (ii) audits must be designed to assess better the quality of stroke patient information provision, (iii) more information should be provided to patients and their families about what they can reasonably expect from the service they are using, (iv) priority should be given to the production of high-quality online material to complement the existing offline offering, (v) longer-term strategies should be developed for sustaining the sense of empowerment stroke patients have outside the hospital, when they generally ask more questions and demand more say in their care.