Developing a service user informed intervention to improve participation and ability to perform daily activities in primary Sjögren’s syndrome: a mixed-methods study protocol

Hackett, Katie, Newton, Julia, Deane, Katherine ORCID: https://orcid.org/0000-0002-0805-2708, Rapley, Tim, Deary, Vincent, Kolehmainen, Niina, Lendrem, Dennis and Ng, Wan-Fai (2014) Developing a service user informed intervention to improve participation and ability to perform daily activities in primary Sjögren’s syndrome: a mixed-methods study protocol. BMJ Open, 4 (8). ISSN 2044-6055

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Abstract

Introduction: A significant proportion of patients with primary Sjögren’s syndrome (PSS) is functionally impaired and experience difficulties participating in various aspects of everyday life. There is currently no evidence of efficacy for non-pharmacological interventions aimed specifically at supporting the patients with PSS to improve their participation and ability to perform daily activities. This paper describes a research protocol for a mixed-methods study to develop an intervention to improve these outcomes. The protocol follows the Medical Research Council framework for complex interventions. Methods and analysis: We will use group concept mapping with the patients, adults who live with them and healthcare professionals to identify factors which prevent people with PSS from participating in daily life and performing daily activities. The factors will be prioritised by participants for importance and feasibility and will inform an intervention to be delivered within a National Health Service (NHS) setting. Evidence-based intervention techniques will be identified for the prioritised factors and combined into a deliverable intervention package. Key stakeholders will comment on the intervention content and mode of delivery through focus groups, and the data will be used to refine the intervention. The acceptability and feasibility of the refined intervention will be evaluated in a future study. Ethics and dissemination: The study has been approved by an NHS Research Ethics Committee, REC Reference: 13/NI/0190. The findings of this study will be disseminated in peer-reviewed journals and through presentation at national and international conferences. Trial registration number: UKCRN Study ID: 15939.

Item Type:	Article
Additional Information:	This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/
Faculty \ School:	Faculty of Medicine and Health Sciences > School of Health Sciences
UEA Research Groups:	Faculty of Medicine and Health Sciences > Research Groups > Community and Family Health (former - to 2017) Faculty of Medicine and Health Sciences > Research Groups > Health in Later Life (former - to 2017) Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health
Depositing User:	Pure Connector
Date Deposited:	08 Oct 2014 08:52
Last Modified:	19 Oct 2023 01:22
URI:	https://ueaeprints.uea.ac.uk/id/eprint/50305
DOI:	10.1136/bmjopen-2014-006264

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