Gallacher, Katie

AbstractBackground. The field of implementation research has recently seen considerable, and long overdue, interest in equity, with a strong emphasis on recognizing and responding to disparities in care. The COMPLETE (COMPLEx inTErventions and service innovation)framework is intended to support inclusive intervention and service design. The aim is the development of a patient-centered and justice-informed framework for the design of complex healthcare interventions and innovations in service design.Methods. We undertook three studies. (1) We operationalized constructs from sociological theories of inequality, implementation processes, social roles and expectations, to build a Matrix Model of mechanisms that drive the embedding of disparities in complex healthcare interventions and service innovations. (2) We developed patient-centered and justice-informed principles for design that form a Theory of Change that can be applied in intervention and service design. (3) We then linked the Matrix Model and the Theory of Change together with core elements of theories of prefigurative design and research justice, to build a Transformational Design Cycle for complex interventions and service innovations around a set of critical questions about the implications.Results. The COMPLETE framework focuses on the ways health inequalities and inequities are brought into being by systemic mechanisms within health services; are then propagated and normalized through implementation mechanisms; and are then realized and normalized in practice through institutionalized expectations of patients and caregivers. The framework provides tools to resist the naturalization of inequities and inequalities.Conclusion. We developed a framework for intervention and service design that consists of three components: a conceptual model of the translation of social determinants of health through organizational mechanisms that shape patient and caregivers’ lived experience of disparities in health and healthcare; a transformational theory of change; and a set of principles for design that seeks to place restitution for disparities at its center.

Objectives Treatment burden is the workload of healthcare for people with long-term conditions (LTC) and its impact on well-being. A method of measurement is required to identify those experiencing high burden and to measure intervention efficacy. Our aim was to identify, examine and appraise validated patient-reported measures (PRMs) of treatment burden in stroke. Here, stroke serves as an exemplar LTC of older adults. Design A systematic review of published studies that describe the development and validation of PRMs measuring treatment burden in stroke survivors. Data sources We searched MEDLINE, Embase, CINAHL and PsycINFO electronic databases. Eligibility criteria Studies published between January 2000 and 12 April 2019 inclusive, in English language. No restrictions were set based on clinical setting or geographical location. Data extraction and synthesis Screening, data extraction and quality appraisal were conducted by two independent reviewers. Content of the PRMs was compared with a published taxonomy of treatment burden. Quality appraisal was conducted using International Society for Quality of Life Research standards. Results From 3993 articles, 6 relevant PRMs were identified: 3 were stroke specific: The Satisfaction with Stroke Care questionnaire; The Stroke Patient-Reported Outcome Measure and The Barriers to Physical Activity after Stroke scale. Three were generic but validated in stroke: The WHO Quality of Life-100; The Patient’s Questionnaire on Participation in Discharge Planning and The Chao Perception of Continuity scale. None comprehensively measured treatment burden. Examples of omitted burdens included developing coping strategies, managing finances and returning to driving. The most notable issue regarding quality appraisal was that three PRMs lacked any underpinning qualitative research relevant to the sample. Conclusion There is a need to develop a comprehensive PRM of treatment burden for use in stroke, with potential for use in other older populations.