An experiment in visual ethnography

This paper discusses a one-day exercise in visual ethnography using a digital camera to take photographs of Deptford in South East London. For me, this represented an experiment in using photography in social research. My area of research interest is ethnographic case studies in regeneration areas, looking at processes of change and the relationships between people which drive these. I am interested in how visual images can be used for data collection and presentation to expand an understanding of the dynamics of communities of place. The exercise here was a first experiment in using visual data. The images were produced as a result of a random walk with a camera in Deptford, so although they are ‘about’ an area they do not represent it in a systematized way. They instead produce fragments of data, representing the interaction between researcher and the field. Mirroring the process that exploratory research often takes, the exercise began with photographs of large-scale street scenes and then began to focus on smaller details. A few of the resulting photographs are presented here, following which I discuss issues concerning the collection of visual data and also how it prompted more general reflections on how I engage with material as a researcher

Ethnographic methods for process evaluations of complex health behaviour interventions

This article outlines the contribution that ethnography could make to process evaluations for trials of complex health-behaviour interventions. Process evaluations are increasingly used to examine how health-behaviour interventions operate to produce outcomes and often employ qualitative methods to do this. Ethnography shares commonalities with the qualitative methods currently used in health-behaviour evaluations but has a distinctive approach over and above these methods. It is an overlooked methodology in trials of complex health-behaviour interventions that has much to contribute to the understanding of how interventions work. These benefits are discussed here with respect to three strengths of ethnographic methodology: (1) producing valid data, (2) understanding data within social contexts, and (3) building theory productively. The limitations of ethnography within the context of process evaluations are also discussed

Family preferences for home or hospital care at diagnosis for children with diabetes in the DECIDE study

Aims: A diagnosis of Type 1 diabetes in childhood can be a difficult life event for children and families. For children who are not severely ill, initial home rather than hospital-based care at diagnosis is an option although there is little research on which is preferable. Practice varies widely, with long hospital stays in some countries and predominantly home-based care in others. This article reports on the comparative acceptability and experience of children with Type 1 diabetes and their parents taking part in the DECIDE study evaluating outcomes of home or hospital-based treatment from diagnosis in the UK. Methods: Semi-structured interviews with 11 (pairs of) parents and seven children were conducted between 15 and 20 months post diagnosis. Interviewees were asked about adaptation to, management and impact of the diabetes diagnosis, and their experience of initial post-diagnosis treatment. Results: There were no differences between trial arms in adaptation to, management of or impact of diabetes. Most interviewees wanted to be randomized to the ‘home’ arm initially but expressed a retrospective preference for whichever trial arm they had been in, and cited benefits relating to learning about diabetes management. Conclusions: The setting for early treatment did not appear to have a differential impact on families in the long term. However, the data presented here describe different experiences of early treatment settings from the perspective of children and their families, and factors that influenced how families felt initially about treatment setting. Further research could investigate the short-term benefits of both settings

Implementation processes in a cognitive rehabilitation intervention for people with dementia: a complexity-informed qualitative analysis

© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ. https://creativecommons.org/licenses/by/4.0/Objectives: Healthcare is often delivered through complex interventions. Understanding how to implement these successfully is important for optimising services. This article demonstrates how the complexity theory concept of ‘self-organisation’ can inform implementation, drawing on a process evaluation within a randomised controlled trial of the GREAT (Goal-oriented cognitive Rehabilitation in Early-stage Alzheimer’s and related dementias: a multi-centre single-blind randomised controlled Trial) intervention which compared a cognitive rehabilitation intervention for people with dementia with usual treatment. Design: A process evaluation examined experiences of GREAT therapists and participants receiving the intervention, through thematic analysis of a focus group with therapists and interviews with participants and their carers. Therapy records of participants receiving the intervention were also analysed using adapted framework analysis. Analysis adopted a critical realist perspective and a deductive-inductive approach to identify patterns in how the intervention operated. Setting: The GREAT intervention was delivered through home visits by therapists, in eight regions in the UK. Participants: Six therapists took part in a focus group, interviews were conducted with 25 participants and 26 carers, and therapy logs for 50 participants were analysed. Intervention: A 16-week cognitive rehabilitation programme for people with mild-to-moderate dementia. Results: ‘Self-organisation’ of the intervention occurred through adaptations made by therapists. Adaptations included simplifying the intervention for people with greater cognitive impairment, and extending it to meet additional needs. Relational work by therapists produced an emergent outcome of ‘social support’. Self-organised aspects of the intervention were less visible than formal components, but were important aspects of how it operated during the trial. This understanding can help to inform future implementation. Conclusions: Researchers are increasingly adopting complexity theory to understand interventions. This study extends the application of complexity theory by demonstrating how ‘self-organisation’ was a useful concept for understanding aspects of the intervention that would have been missed by focusing on formal intervention components. Analysis of self-organisation could enhance future process evaluations and implementation studies. Trial registration number: ISRCTN21027481.Peer reviewedFinal Published versio

Nature as a 'Lifeline': The Power of Photography when Exploring the Experiences of Older Adults living with Memory Loss and Memory Concerns

The visual is an underutilised modality through which to investigate experiences of memory loss in older people. We describe a visual ethnography with older adults experiencing subjective or objective memory loss, receiving a cognitive wellbeing group intervention designed to prevent cognitive decline and dementia (APPLE-Tree programme). We aimed to explore lived experiences of people with memory concerns, how participants engaged with this photography and co-design project, and how collaboration with an artist/photographer enhanced this process. Nineteen participants shared photographs reflecting what they valued in their daily lives, their experiences of memory concerns, and the intervention. Fourteen participated in qualitative photo-elicitation interviews, and thirteen collaborated with a professional artist/photographer to co-create an exhibition, in individual meetings and workshops, during which a researcher took ethnographic field notes. Eight participants were re-interviewed after the exhibition launch. We contextualise images produced by participants in relation to discourses around the visual and ageing and highlight their relationship with themes developed through thematic analysis that interconnects photographic, observational and interview data. We present themes around the use of photographs to: (1) celebrate connections to nature as a lifeline; (2) anchor lives within the context of relationships with family; (3) reflect on self and identity, enduring through ageing, memory concerns, pandemic, and ageing stereotypes. We explore visual research as a powerful tool for eliciting meaningful accounts from older adults experiencing cognitive change and to connect the arts and social sciences within ageing studies

Practitioners' ability to remotely develop understanding for personalised care and support planning: a thematic analysis of multiple data sources from the feasibility phase of the Dementia Personalised Care Team (D-PACT) intervention

Practitioner understanding of patients' preferences, wishes and needs is essential for personalised health care i.e., focusing on 'what matters' to people based on their individual life situation. To develop such an understanding, dementia practitioners need to use communication practices that help people share their experiences, preferences, and priorities. Following the COVID-19 pandemic, dementia support is likely to continue to be delivered both remotely and in-person. This study analysed multiple sources of qualitative data to examine the views of practitioners, people living with dementia and carers, and researchers on how an understanding of what matters to people living with dementia can be developed remotely via telephone and video call. Access to environmental stimuli, the remote use of visual tools, peoples' tendency to downplay or omit details about their troubles and carers' ability to disclose privately were interpreted, through thematic analysis, to be factors affecting how practitioners sought to develop understanding remotely. Cumulatively, findings show that while remote support created unique challenges to practitioners' ability to develop understanding for personalised care, practitioners developed adaptive strategies to overcome some of these challenges. Further research should examine how, when and for whom these adapted practices for remote personalised care work, informing the development of evidence-based guidance and training on how practitioners can remotely develop the understanding required for personalised care

Practitioners’ ability to remotely develop understanding for personalised care and support planning: a thematic analysis of multiple data sources from the feasibility phase of the Dementia Personalised Care Team (D-PACT) intervention

Practitioner understanding of patients’ preferences, wishes and needs is essential for personalised health care i.e., focusing on ‘what matters’ to people based on their individual life situation. To develop such an understanding, dementia practitioners need to use communication practices that help people share their experiences, preferences, and priorities. Following the COVID-19 pandemic, dementia support is likely to continue to be delivered both remotely and in-person. This study analysed multiple sources of qualitative data to examine the views of practitioners, people living with dementia and carers, and researchers on how an understanding of what matters to people living with dementia can be developed remotely via telephone and video call. Access to environmental stimuli, the remote use of visual tools, peoples’ tendency to downplay or omit details about their troubles and carers’ ability to disclose privately were interpreted, through thematic analysis, to be factors affecting how practitioners sought to develop understanding remotely. Cumulatively, findings show that while remote support created unique challenges to practitioners’ ability to develop understanding for personalised care, practitioners developed adaptive strategies to overcome some of these challenges. Further research should examine how, when and for whom these adapted practices for remote personalised care work, informing the development of evidence-based guidance and training on how practitioners can remotely develop the understanding required for personalised care

A systematic review of process evaluations for psychosocial interventions designed to improve the wellbeing and quality of life of community-dwelling people with dementia and their carers

Background: Psychosocial interventions improve the wellbeing and quality of life of People Living with Dementia (PLWD) and their family carers; but due to their complexity it can be challenging to identify mechanisms of action. We reviewed process evaluations that have sought to elucidate how these interventions work, to inform their implementation. Method: We systematically reviewed process evaluations of studies evaluating psychosocial interventions for PLWD in their own home and/or their family carers. We rated study quality using the Mixed Methods Appraisal Tool (MMAT). We described, with reference to Medical Research Council (2015) process evaluation guidance, how implementation, mechanisms of impact and contextual factors were investigated; and describe commonalities in the mechanisms of action identified across studies. Results: 24 included studies evaluated the processes of 22 interventions. These studies collectively applied five frameworks; almost all frameworks’ advised evaluations were theory-based and used mixed-methods analyses, but only 5/24 evaluation designs were informed by the intervention theory and 8/24 used mixed methods. 8/24 evaluations considered contextual factors in their design, though 20/24 cited contextual factors in findings. Interventions were more successful where PLWD were motivated and aware of potential benefits, and when carers could support engagement and were themselves supported by the intervention. How the intervention aligned with participants’ current needs and stage of dementia were key influencing factors. Conclusion: Knowing how interventions can influence change for community-dwelling people with dementia and their family carers will improve translation of trial findings into practice. Robust, theory-driven process evaluations can enable this

“It's a lot more complicated than it seems”: physiotherapists' experiences of using compensation strategies in people with Parkinson's

BackgroundGait disturbances often result in functional limitations in daily activities and negatively impact the quality of life in people with Parkinson's disease. Physiotherapists often employ compensation strategies in an attempt to improve patients' walking. However, little is known about physiotherapists' experiences in this regard. We evaluated how physiotherapists adopt compensation strategies and what they draw on to inform their clinical decision-making.MethodsWe carried out semi-structured online interviews with 13 physiotherapists with current or recent experience working with people with Parkinson's disease in the United Kingdom. Interviews were digitally recorded and transcribed verbatim. Thematic analysis was utilized.ResultsTwo main themes were developed from the data. The first theme, optimizing compensation strategies through personalized care, shows how physiotherapists accounted for the individual needs and characteristics of people with Parkinson's, which resulted in them individually tailoring compensation strategies. The second theme, delivering compensation strategies effectively, considers the available support and perceived challenges with work settings and experience that impact physiotherapists' ability to deliver compensation strategies.DiscussionAlthough physiotherapists strived to optimize compensation strategies, there was a lack of formal training in this area, and their knowledge was primarily acquired from peers. Furthermore, a lack of specific knowledge on Parkinson's can impact physiotherapists’ confidence in maintaining person-centered rehabilitation. However, the question that remains to be answered is what accessible training could address the knowledge–practice gap to contribute to the delivery of better-personalized care for people with Parkinson's