Cecilia Vindrola-Padros

From informed consent to dissemination: Using participatory visual methods with young people with long-term conditions at different stages of research.

ABSTRACT Research with young people suffering from a long-term illness has more recently incorporated the use of visual methods to foster engagement of research participants from a wide age range, capture the longitudinal and complex factors involved in young people’s experiences of care, and allow young people to express their views in multiple ways. Despite its contributions, these methods are not always easy to implement and there is a possibility that they might not generate the results or engagement initially anticipated by researchers. We hope to expand on the emerging discussion on the use of participatory visual methods by presenting the practical issues we have faced while using this methodology during different stages of research: informed assent/consent, data collection, and the dissemination of findings. We propose a combination of techniques to make sure that the research design is flexible enough to allow research participants to shape the research process according to their needs and interests.

Healthcare professionals' views on discussing fertility preservation with young cancer patients: a mixed method systematic review of the literature

In spite of efforts to guarantee patients are adequately informed about their risk of fertility loss and offered treatment for fertility preservation (FP), previous studies have reported that this topic is not routinely discussed with patients, especially with younger patient populations. A mixed method systematic review was undertaken to explore the factors shaping the discussion of FP with children (0–15 years) and adolescents/young adults (16–24 years) with cancer.

The Narrated, Nonnarrated, and the Disnarrated: Conceptual Tools for Analyzing Narratives in Health Services Research

While analyzing the narratives of children receiving pediatric oncology treatment and their parents, we encountered three ways to look at their narratives: what was narrated, nonnarrated, and disnarrated. The narrated refers to the actors (characters) and events (scenes) individuals decided to include in the narration of their experiences, the nonnarrated are everything not included in narration, and the disnarrated are elements that are narrated in the story but did not actually take place. We use our reflection to illustrate how an integrative analysis of these different forms of narration can allow us to produce a holistic interpretation of people’s experiences of illness. This approach is still in the early stages of development, but we hope this article can promote a debate in the field and lead to the refinement of an important tool for narrative analysis.

Rapid qualitative research methods during complex health emergencies: A systematic review of the literature

The 2013-2016 Ebola outbreak in West Africa highlighted both the successes and limitations of social science contributions to emergency response operations. An important limitation was the rapid and effective communication of study findings. A systematic review was carried out to explore how rapid qualitative methods have been used during global heath emergencies to understand which methods are commonly used, how they are applied, and the difficulties faced by social science researchers in the field. We also asses their value and benefit for health emergencies. The review findings are used to propose recommendations for qualitative research in this context. Peer-reviewed articles and grey literature were identified through six online databases. An initial search was carried out in July 2016 and updated in February 2017. The PRISMA checklist was used to guide the reporting of methods and findings. The articles were assessed for quality using the MMAT and AACODS checklist. From an initial search yielding 1444 articles, 22 articles met the criteria for inclusion. Thirteen of the articles were qualitative studies and nine used a mixed-methods design. The purpose of the rapid studies included: the identification of causes of the outbreak, and assessment of infrastructure, control strategies, health needs and health facility use. The studies varied in duration (from 4 days to 1 month). The main limitations identified by the authors were: the low quality of the collected data, small sample sizes, and little time for cross-checking facts with other data sources to reduce bias. Rapid qualitative methods were seen as beneficial in highlighting context-specific issues that need to be addressed locally, population-level behaviors influencing health service use, and organizational challenges in response planning and implementation. Recommendations for carrying out rapid qualitative research in this context included the early designation of community leaders as a point of contact, early and continuous sharing of findings, and development of recommendations with local policy makers and practitioners.

Reorganising specialist cancer surgery for the twenty-first century: a mixed methods evaluation (RESPECT-21)

BackgroundThere are longstanding recommendations to centralise specialist healthcare services, citing the potential to reduce variations in care and improve patient outcomes. Current activity to centralise specialist cancer surgical services in two areas of England provides an opportunity to study the planning, implementation and outcomes of such changes. London Cancer and Manchester Cancer are centralising specialist surgical pathways for prostate, bladder, renal, and oesophago-gastric cancers, so that these services are provided in fewer hospitals. The centralisations in London were implemented between November 2015 and April 2016, while implementation in Manchester is anticipated in 2017.Methods/DesignThis mixed methods evaluation will analyse stakeholder preferences for centralisations; it will use qualitative methods to analyse planning, implementation and sustainability of the centralisations (‘how and why?’); and it will use a controlled before and after design to study the impact of centralisation on clinical processes, clinical outcomes, cost-effectiveness and patient experience (‘what works and at what cost?’). The study will use a framework developed in previous research on major system change in acute stroke services. A discrete choice experiment will examine patient, public and professional preferences for centralisations of this kind. Qualitative methods will include documentary analysis, stakeholder interviews and non-participant observations of meetings. Quantitative methods will include analysis of local and national data on clinical processes, outcomes, costs and National Cancer Patient Experience Survey data. Finally, we will hold a workshop for those involved in centralisations of specialist services in other settings to discuss how these lessons might apply more widely.DiscussionThis multi-site study will address gaps in the evidence on stakeholder preferences for centralisations of specialist cancer surgery and the processes, impact and cost-effectiveness of changes of this kind. With increasing drives to centralise specialist services, lessons from this study will be of value to those who commission, organise and manage cancer services, as well as services for other conditions and in other settings. The study will face challenges in terms of recruitment, the retrospective analysis of some of the changes, the distinction between primary and secondary outcome measures, and obtaining information on the resources spent on the reconfiguration.

Mapping Adolescent Cancer Services: How Do Young People, Their Families, and Staff Describe Specialized Cancer Care in England?

Background: Specialized cancer services for adolescents and young adults (AYAs) are being developed in a number of countries to address the particular needs of this population. However, the evidence base to inform service design and associated care delivery is inadequate. Objective: The aim of this study was to undertake a mapping study to identify the main components of AYA cancer care to be studied further to reflect the range of approaches to service delivery currently provided in England. Methods: Semistructured interviews were conducted with young people, their family members, and staff in 11 AYA principal treatment centers. Using different levels of extraction, these data were drawn together to illuminate the main components of AYA cancer care and the range of approaches to service delivery. Results: Young people, family members, and staff consistently identified and valued similar areas of AYA cancer care: caring and supportive staff, activities designed for AYAs, and an environment that feels like home. Conclusion: The mapping exercise successfully informed the selection of 4 sites for an in-depth case study. The main components of specialized AYA care have been described. Implications for Practice: This description can assist clinical teams interested in developing or refining their approach to AYA cancer care. It could also offer a way to agree priorities, based on the key components young people consider as being essential for their care, and facilitate services to benchmark against these key components, and it could also go some way to address international AYA goals to support global change to reduce the current disparities in care.

Quick and dirty? A systematic review of the use of rapid ethnographies in healthcare organisation and delivery

Background The ability to capture the complexities of healthcare practices and the quick turnaround of findings make rapid ethnographies appealing to the healthcare sector, where changing organisational climates and priorities require actionable findings at strategic time points. Despite methodological advancement, there continue to be challenges in the implementation of rapid ethnographies concerning sampling, the interpretation of findings and management of field research. The purpose of this review was to explore the benefits and challenges of using rapid ethnographies to inform healthcare organisation and delivery and identify areas that require improvement. Methods This was a systematic review of the literature using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We used the Mixed Methods Appraisal Tool to assess the quality of the articles. We developed the search strategy using the Population, Intervention, Comparison, Outcomes, Settingframework and searched for peer-reviewed articles in MEDLINE, CINAHL PLUS, Web of Science and ProQuest Central. We included articles that reported findings from rapid ethnographies in healthcare contexts or addressing issues related to health service use. Results 26 articles were included in the review. We found an increase in the use of rapid ethnographies in the last 2‰years. We found variability in terminology and developed a typology to clarify conceptual differences. The studies generated findings that could be used to inform policy and practice. The main limitations of the studies were: the poor quality of reporting of study designs, mainly data analysis methods, and lack of reflexivity. Conclusions Rapid ethnographies have the potential to generate findings that can inform changes in healthcare practices in a timely manner, but greater attention needs to be paid to the reflexive interpretation of findings and the description of research methods. Trial registration number CRD42017065874.

Centralising specialist cancer surgery services in England: survey of factors that matter to patients and carers and health professionals

BackgroundThe centralisation of specialist cancer surgical services across London Cancer and Greater Manchester Cancer, England, may significantly change how patients experience care. These centres are changing specialist surgical pathways for several cancers including prostate, bladder, kidney, and oesophago-gastric cancers, increasing the specialisation of centres and providing surgery in fewer hospitals. While there are potential benefits related to centralising services, changes of this kind are often controversial. The aim of this study was to identify factors related to the centralisation of specialist surgical services that are important to patients, carers and health care professionals.MethodsThis was a questionnaire-based study involving a convenience sample of patient and public involvement (PPI) and cancer health care professional (HCP) sub-groups in London and Greater Manchester (n = 186). Participants were asked to identify which of a list of factors potentially influenced by the centralisation of specialist cancer surgery were important to them and to rank these in order of importance. We ranked and shortlisted the most important factors.ResultsWe obtained 52 responses (28% response rate). The factors across both groups rated most important were: highly trained staff; likelihood and severity of complications; waiting time for cancer surgery; and access to staff members from various disciplines with specialised skills in cancer. These factors were also ranked as being important separately by the PPI and HCP sub-groups. There was considerable heterogeneity in the relative ordering of factors within sub-groups and overall.ConclusionsThis study examines and ranks factors important to patients and carers, and health care professionals in order to inform the implementation of centralisation of specialist cancer surgical services. The most important factors were similar in the two stakeholder sub-groups. Planners should consider the impact of reorganising services on these factors, and disseminate this information to patients, the public and health care professionals when deciding whether or not and how to centralise specialist cancer surgical services.

Building the evidence for nursing practice: learning from a structured review of SIOP abstracts, 2003-2012

The focus of work submitted to an international conference can reflect the changing landscape of a specialty and prove important for identifying trends, uncovering gaps, and providing new directions for nurse‐led research and clinical practice. We present an analysis of trends in presentations in the nursing program at the SIOP congress from 2003 to 2012 based on all accepted abstracts.

Discrete-choice experiment to analyse preferences for centralizing specialist cancer surgery services: Preferences for centralizing specialist cancer surgery services

Centralizing specialist cancer surgery services aims to reduce variations in quality of care and improve patient outcomes, but increases travel demands on patients and families. This study aimed to evaluate preferences of patients, health professionals and members of the public for the characteristics associated with centralization.