Publications by authors named "Carl R May"

Background: There persist disparities in access to quality palliative and end-of-life care, often based on avoidable injustice. Research and theory to explain this health inequity focuses on structural or individual-based factors, overlooking important relational factors between health professionals, patients and families.

Aim: To apply Cognitive Authority Theory in palliative and end-of-life care to explain neglected relational drivers of inequity in access and experience.

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Introduction: Evaluating the safety and acceptability of reusing catheters for intermittent catheterisation (IC) is one of the top 10 continence research priorities identified by the UK James Lind Alliance Priority Setting Partnership in 2008. There are an estimated 50 000 IC users in England and this number is rising. Globally, both single-use catheters (thrown away after use) and multi-use/reusable ones (cleaned between uses) are used.

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The importance of informal caregiving for chronic illness has been well established in African contexts but is underexplored in the context of HIV/NCD multimorbidity, particularly in South Africa. Building on treatment burden theories that investigate workload in the context of chronic illness, this paper explores how informal caregiving networks impact the capacity of people living with multimorbidity (PLWMM) in low-income settings in urban and rural South Africa. Qualitative semi-structured interviews were carried out with thirty people living with multimorbidity and sixteen informal caregivers between February and April 2021 in two settings, Cape Town (urban) and Bulungula (rural).

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Background: Implementation outcomes measures can be used to assess the implementation of complex health and social care interventions, but evidence for the use of these measures, and their psychometric properties, remains limited. The NoMAD ( Normalisation Me asure Development) survey, based on Normalisation Process Theory, was developed to assess, monitor, or measure factors likely to affect normalisation of a new practice from the perspective of participants who are engaged in an implementation process. Since publication in 2015, NoMAD has been translated into several languages and is increasingly being used in health and care research.

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Background: The process of tailored implementation is ill-defined and under-explored. The ItFits-toolkit was developed and subsequently tested as a self-guided online platform to facilitate implementation of tailored strategies for internet-based cognitive behavioural therapy (iCBT) services. In ImpleMentAll, ItFits-toolkit had a small but positive effect on the primary outcome of iCBT normalisation.

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Background: The workload health and social care service users and caregivers take on, and their capacity to do this work is important. It may play a key part in shaping the implementation of innovations in health service delivery and organisation; the utilisation and satisfaction with services; and the outcomes of care. Previous research has often focused on experiences of a narrow range of long-term conditions, and on factors that shape adherence to self-care regimes.

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Background: People living with multimorbidity in economically precarious circumstances in low- and middle-income countries (LMICs) experience a high workload trying to meet self-management demands. However, in countries such as South Africa, the availability of social networks and support structures may improve patient capacity, especially when networks are governed by cultural patterns linked to the Pan-African philosophy of Ubuntu, which promotes solidarity through humanness and human dignity. We explore the mediating role Ubuntu plays in people's ability to self-manage HIV/NCD multimorbidity in underprivileged settings in urban and rural South Africa.

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Purpose: This paper describes a conceptual framework of maintenance of physical activity (PA) and its application to future intervention design.

Methods: Evidence from systematic literature reviews and in-depth (N = 27) qualitative interviews with individuals with cancer were used to develop a conceptual framework of long-term physical activity behaviour. Determinants of long-term PA were listed and linked with domains of the Theoretical Domains Framework which in turn were linked to associated behaviour change techniques (BCTs) and finally to proposed mechanisms of action (MoA).

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Background: The implementation science literature acknowledges a need for engagement of key stakeholders when designing, delivering and evaluating implementation work. To date, the literature reports minimal or focused stakeholder engagement, where stakeholders are engaged in either barrier identification and/or barrier prioritisation. This paper begins to answer calls from the literature for the development of tools and guidance to support comprehensive stakeholder engagement in implementation research and practice.

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Background: COVID-19 necessitated the rapid implementation and uptake of virtual health care; however, virtual care's potential role remains unclear in the urgent care setting. In December 2020, the first virtual emergency department (ED) in the Greater Toronto Area was piloted at Sunnybrook Health Sciences Centre by connecting patients to emergency physicians through an online portal.

Objective: This study aims to understand whether and how ED physicians were able to integrate a virtual ED alongside in-person operations.

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Objectives: To describe how patients with CKD negotiated assigned responsibilities in the management of their disease, resulting in potential relational nonadherence.

Methods: Qualitative study performed in two healthcare facilities in Buenos Aires, Argentina, including 50 patients and 14 healthcare providers. We conducted semistructured interviews which were analysed using a frame of reference with concepts of Burden of Treatment and Cognitive Authority theories.

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Aims And Objectives: Following a cross-sectional survey, a sub-sample of participants was interviewed to explore the interaction between symptoms and burden of treatment.

Background: Burden of treatment considers both the work associated with illness and treatment, including self-care work, as well as the individuals' capabilities and resources to engage in that work. The recent survey revealed the existence of a complex interaction.

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Background: Normalization Process Theory (NPT) identifies mechanisms that have been demonstrated to play an important role in implementation processes. It is now widely used to inform feasibility, process evaluation, and implementation studies in healthcare and other areas of work. This qualitative synthesis of NPT studies aims to better understand how NPT explains observed and reported implementation processes, and to explore the ways in which its constructs explain the implementability, enacting and sustainment of complex healthcare interventions.

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Some patients have to work hard to manage their illness. When this work outweighs capacity (the resources available to patients to undertake the illness workload and other workloads such as that of daily life), this may result in treatment burden, associated with poor health outcomes for patients. This cross-sectional, comparative qualitative analysis uses an abductive approach to identify, characterise and explain treatment burden in chronic obstructive pulmonary disease (COPD) and lung cancer.

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Background: Randomised controlled trials (RCTs) have been increasingly used to test the effectiveness of mental health and psychosocial support(MHPSS) interventions for populations affected by humanitarian crises. Process evaluations are often integrated within RCTs of psychological interventions to investigate the implementation of the intervention, the impact of context, and possible mechanisms of action. We aimed to explore limitations and strengths of how process evaluations are currently conceptualised and implemented within MHPSS RCTs specifically.

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Aims: This study aimed to describe patient-reported symptoms and burden of treatment (BoT) experienced by patients with chronic heart failure (CHF). BoT describes the illness workload, individual capacity to perform that work, and resultant impact on the individual. Overwhelming BoT is related to poor quality of life and worse clinical outcomes.

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Background: The implementation of diabetes prevention for women with previous gestational diabetes (GDM) has been stymied by many barriers that are located within routine general practice (GP). We aimed to unpack the GP factors and understand the mechanisms that explain why a diabetes prevention intervention for this population succeeds or fails.

Methods: We performed a mixed-methods study with a Normalization Process Theory framework that included clinical audits, semistructured interviews, and focus groups within mixed urban and rural primary care practices in Victoria, Australia.

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Background: Normalisation Process Theory (NPT) is frequently used to inform qualitative research that aims to explain and evaluate processes that shape late-stage translation of innovations in the organisation and delivery of healthcare. A coding manual for qualitative researchers using NPT will facilitate transparent data analysis processes and will also reduce the cognitive and practical burden on researchers.

Objectives: (a) To simplify the theory for the user.

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Aim: To investigate the experiences of patients, clinicians and managers during the accelerated implementation of virtual consultations (VCs) due to COVID-19. To understand how patient preferences are constructed and organized.

Methods: Semi-structured interviews with patients, clinicians and managerial staff at a single specialist orthopaedic centre in the United Kingdom.

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Purpose: To determine the effectiveness of a shared decision-making (SDM) tool versus guideline-informed usual care in translating evidence into primary care, and to explore how use of the tool changed patient perspectives about diabetes medication decision making.

Methods: In this mixed methods multicenter cluster randomized trial, we included patients with type 2 diabetes mellitus and their primary care clinicians. We compared usual care with or without a within-encounter SDM conversation aid.

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Objectives: To conduct a qualitative investigation on a subset of participants from a previously completed Discrete Choice Experiment (DCE) to understand why factors identified from the DCE are important, how they influenced preference for virtual consultations (VC) and how COVID-19 has influenced preference for VC.

Methods: A quota sample was recruited from participants who participated in our DCE. We specifically targeted participants who were strongly in favour of face-to-face consultations (F2F - defined as choosing all or mostly F2F in the DCE) or strongly in favour of virtual consultations (VC - defined as choosing all or mostly VC consultations in the DCE) to elicit a range of views.

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Objective: Virtual Consultations may reduce the need for face-to-face outpatient appointments, thereby potentially reducing the cost and time involved in delivering health care. This study reports a discrete choice experiment (DCE) that identifies factors that influence patient preferences for virtual consultations in an orthopaedic rehabilitation setting.

Methods: Previous research from the CONNECT (Care in Orthopaedics, burdeN of treatmeNt and the Effect of Communication Technology) Project and best practice guidance informed the development of our DCE.

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