Are people living with Huntington's disease experiencing person-centered integrated care?

Huntington's disease (HD) is among the most complex long-term neurological conditions, necessitating care and management from multiple partners within and beyond the health sector. However, there is a paucity of evidence describing how individuals receive this multifaceted care and whether current care provision adequately meets their needs. To understand if current care provision is meeting the complex needs of people living with HD in England and assess their perceived need for integrated care.

Evaluating qualitative data analysis workshops from the perspective of public contributors.

Background: The aim of this project is to evaluate public contributors' experiences of their involvement in qualitative data analysis workshops during an on-going research project titled 'Personalised Primary care for Patients with Multiple long-term conditions'.

Methods: Four qualitative data analysis workshops were designed and conducted between August and December 2023. We used the Cube evaluation framework (henceforth referred to as the Cube) to evaluate the workshops.

Creating pre-conditions for change in clinical practice: the influence of interactions between multiple contexts and human agency.

Purpose: The purpose of this paper is to explore what happens when changes to clinical practice are proposed and introduced in healthcare organisations. The authors use the implementation of Treatment Escalation Plans to explore the dynamics shaping the translational journey of a complex intervention from research into the everyday context of real-world healthcare settings.

Design/methodology/approach: A qualitative instrumental collective case study design was used.

Managing patient preferences and clinical responses in acute pathophysiological deterioration: What do clinicians think treatment escalation plans do?

Treatment Escalation Plans (TEPs) are paper and electronic components of patients' clinical record that are intended to encourage patients and caregivers to contribute in advance to decisions about treatment escalation and de-escalation at times of loss of capacity. There is now a voluminous literature on patient decision-making, but in this qualitative study of British clinicians preparing to implement a new TEP, we focus on the ways that they understood it as much more than a device to promote patient awareness of the potential for pathophysiological deterioration and to elicit their preferences about care. Working through the lens of Callon's notion of agencements, and elements of May and Finch's Normalisation Process Theory, we show how clinicians saw the TEP as an organising device that enabled translation work to elicit individual preferences and so mitigate risks associated with decision-making under stress; and transportation work to make possible procedures that would transport agreed patterns of collective action around organisations and across their boundaries and to mitigate risks that resulted from relational and informational fragmentation.