Towards a qualitative data observatory: generation, connection, use

The Patients Association Nutrition Checklist (Checklist) is a simple tool that can be used to identify older adults who may be at risk of malnutrition at an early stage and provide simple advice and signpost to additional support. The Scottish Borders Council, in partnership with the Eat Well Age Well Charity, have been implementing the Checklist across health and social care organisations since Autumn 2021. Aims: To see if it was possible to use the Checklist in 12 organisations that work with older adults in the community, and to understand what the impact of the Checklist is for older adults and the staff who use it. Methods: Information regarding how the Checklist was used and the experiences of staff who work in the organisations was collected using online surveys. Organisation staff and the Checklist trainer (Eat Well Age Well) were interviewed about their experiences of using the Checklist.

Welcome to the second issue of Volume 43 of the IASSIST Quarterly (IQ 43:2, 2019). Four papers are presented in this issue on qualitative research support. This special issue arises from conversations in the Qualitative Social Science and Humanities Data Interest Group (QSSHDIG) at IASSIST about how best to support qualitative researchers. This group was founded in 2016 to explore the challenges and opportunities facing data professionals in the social sciences and humanities, and has focused on using, reusing, sharing, and archiving of qualitative, textual, and other non-numeric data.
 In ‘Annotation for transparent inquiry (ATI),’ Sebastian Karcher and Nic Weber present their work on a new approach to transparency in qualitative research by the same name, which they have been exploring at the Qualitative Data Repository at the University of Syracuse, New York. As one solution to the problem of ‘showing one’s work’ in qualitative research, ATI allows researchers to link final reports back to the underlying qualitative and textual data used to support a claim. Using the example of Hypothes.is, they discuss the positives and negatives of ATI, particularly the amount of time required to annotate a qualitative article effectively and technical limitations in widespread web display.
 The next article highlights how archived materials can be re-used by qualitative researchers and used to build their arguments. In ‘Research driven approaches to archival discovery,’ Diana Marsh examines what qualitative researchers need from the collections at the National Anthropological Archives in the United States, in order to improve archival discovery for those not as accustomed to working in the archives.
 In ‘Bringing method to the madness,’ Mandy Swygart-Hobaugh, Leader of the Research Data Services Team at the Georgia State University Library, outlines a project created to bridge the gap between training researchers to use qualitative data software and training them in qualitative methods. Her answer has been a collaborative workshop with a sociology professor who provides a methodological framework while she applies those principles to a project in NVivo. These successful workshops have helped to encourage researchers to consider qualitative methods while at the same time promoting the use of CAQDAS software.
 Jonathan Cain, Liz Cooper, Sarah DeMott, and Alesia Montgomery in their article ‘Where QDA is hiding?’ draw on a study originally conducted for QSSHDIG to create a list of qualitative data services in libraries. When they realized that finding these services was quite difficult, they expanded the study to examine the discoverability of library sites supporting QDA. This study of 95 academic library websites provides insight into the issues of finding and accessing library websites that support the full range of qualitative research needs. They also outline the key characteristics of websites that provide more accessible access to qualitative data services.
 We thank our authors for participating in this special issue and providing their insights on qualitative data and research. If you are interested in issues related to qualitative research, then please join the Qualitative Social Sciences and Humanities Data Interest Group. Starting with IASSIST 2019 in Australia, our interest group has a new leadership team with two of our authors, Sebastian Karcher and Alesia Montgomery, taking over as co-conveners. We are certain that they would love to hear your ideas for the group, and we look forward to working with the qualitative data community more in the future.
 Lynda Kellam, Cornell Institute for Social & Economic Research
 Celia Emmelhainz, University of California, Berkeley

This study examined turnover rates of teams implementing psychosocial evidence-based practices in public-sector mental health settings. It also explored the relationship between turnover and implementation outcomes in an effort to understand whether practitioner perspectives on turnover are related to implementation outcomes. Team turnover was measured for 42 implementing teams participating in a national demonstration project examining implementation of five evidence-based practices between 2002 and 2005. Regression techniques were used to analyze the effects of team turnover on penetration and fidelity. Qualitative data collected throughout the project were blended with the quantitative data to examine the significance of team turnover to those attempting to implement the practices. High team turnover was common (M+/-SD=81%+/-46%) and did not vary by practice. The 24-month turnover rate was inversely related to fidelity scores at 24 months (N=40, beta=-.005, p=.01). A negative trend was observed for penetration. Further analysis indicated that 71% of teams noted that turnover was a relevant factor in implementation. The behavioral health workforce remains in flux. High turnover most often had a negative impact on implementation, although some teams were able to use strategies to improve implementation through turnover. Implementation models must consider turbulent behavioral health workforce conditions.

BackgroundManaged cancer networks are widely promoted in national cancer control programs as an organizational form that enables integrated care as well as enhanced patient outcomes. While national programs are set by policy-makers, the detailed implementation of networks is delegated at the service delivery and institutional levels. It is likely that the capacity to ensure more integrated cancer services requires multi-level governance processes responsive to the strengths and limitations of the contexts and capable of supporting network-based working. Based on an empirical case, this study aims to analyze the implementation of a mandated cancer network, focusing on governance and health services integration as core concepts in the study.Methods/designThis nested multi-case study uses mixed methods to explore the implementation of a mandated cancer network in Quebec, a province of Canada. The case is the National Cancer Network (NCN) subdivided into three micro-cases, each defined by the geographic territory of a health and social services region. For each region, two local health services centers (LHSCs) are selected based on their differences with respect to determining characteristics. Qualitative data will be collected from various sources using three strategies: review of documents, focus groups, and semi-directed interviews with stakeholders. The qualitative data will be supplemented with a survey that will measure the degree of integration as a proxy for implementation of the NCN. A score will be constructed, and then triangulated with the qualitative data, which will have been subjected to content analysis. Qualitative, quantitative, and mixed methods data will be interpreted within and across cases in order to identify governance patterns similarities and differences and degree of integration in contexts.DiscussionThis study is designed to inform decision-making to develop more effective network implementation strategies by thoroughly describing multi-level governance processes of a sample of settings that provide cancer services. Although the study focuses on the implementation of a cancer network in Quebec, the rich descriptions of multiple nested cases will generate data with a degree of generalizability for health-care systems in developed countries.Electronic supplementary materialThe online version of this article (doi:10.1186/s13012-016-0404-8) contains supplementary material, which is available to authorized users.

BackgroundThe Midhurst Macmillan Specialist Palliative Care at Home Service was founded in 2006 to improve community-based palliative care provision. Principal components include; early referral; home-based clinical interventions; close partnership working;...

Plain English summaryService users should be involved in every part of the research process, including analysis of qualitative research data such as interviews and focus groups. To enhance their participation, confidence and contributions, training and support for both the ‘professional’ researcher and lay member of public is essential. Historically this has taken a number of forms from short 1 day training sessions through to training spread out over several months. There currently is limited guidance on the quantity and content of such training sessions for Patient and Public Involvement (PPI) Partners. This paper discusses and explores the content and delivery of qualitative analysis training held over two sessions of 3 h duration to members of a University PPI group. The training was designed by experienced qualitative researchers and PPI partners based on available literature and research expertise. Training included the theory of qualitative research methods, and practical qualitative analysis coding skills. These skills were developed through the use of ‘mock’ interviews which participants practiced coding in supportive group sessions. Their feedback on the training is provided. One of the PPI partners subsequently went onto code data with a researcher working on a funded research study, and has reflected on both the training sessions and the subsequent analysis of the data. These reflections have been supplemented by reflections of the researcher who worked alongside the PPI partner, revealing that the process challenged perspectives and helped them view data through a service users eyes. A positive working relationship was central to this.BackgroundService users should be involved in every part of the research process to ensure that interventions are fit for those whom they are intended to help. Involving service users in analysing qualitative data such as focus groups and interviews has been recognised as particularly valuable. Older people have frequently been less involved in these initiatives. A wide range of training programmes have been proposed but there is currently limited guidance on the quantity and content of training sessions to support training Patient and Public Involvement (PPI) Partners. This paper discuses and explores the content and delivery of qualitative data analysis training to members of a University PPI Group.BodyExisting literature on PPI in qualitative data analysis was reviewed by the research team and an outline programme was designed. This comprised of two three hour sessions held at an easily accessible venue familiar to members of the PPI group. The course included theories behind qualitative research methodology and methods, what is coding and how to code independently and as part of a research team using Thematic Analysis. A mock research question was generated and two mock interviews were completed, audio recorded and transcribed verbatim. This provided participants with real life experience of coding data. The session was positively reviewed and said to be interesting, enjoyable and provided a good overview of qualitative analysis. One of the PPI partners subsequently went onto code data with a researcher working on a funded research study, and has reflected on both the training sessions and the subsequent analysis of the data. These reflections have been supplemented by reflections of the researcher who worked alongside the PPI, revealing that the process challenged perspectives and helped them view data through a service users eyes. A positive working relationship was central to this.ConclusionsFeedback suggests that the training enabled PPI partners to become active members of the research team in qualitative data analysis. There is a need for further research into the optimal amount of training needed by PPI’s to participate as partners in qualitative analysis.

Background/Objective: Pressure ulcers are a serious complication for people with spinal cord injury (SCI). The Consortium for Spinal Cord Medicine (CSCM) published clinical practice guidelines (CPGs) that provided guidance for pressure ulcer prevention and treatment after SCI. The aim of this study was to assess providers' perceptions for each of the 32 CPG recommendations regarding their agreement with CPGs, degree of CPG implementation, and CPG implementation barriers and facilitators. Methods: This descriptive mixed-methods study included both qualitative (focus groups) and quantitative (survey) data collection approaches. The sample (n = 60) included 24 physicians and 36 nurses who attended the 2004 annual national conferences of the American Paraplegia Society or American Association of Spinal Cord Injury Nurses. This sample drew from two sources: a purposive sample from a list of preregistered participants and a convenience sample of conference attendee volunteers. We analyzed quantitative data using descriptive statistics and qualitative data using a coding scheme to capture barriers and facilitators. Results: The focus groups agreed unanimously on the substance of 6 of the 32 recommendations. Nurse and physician focus groups disagreed on the degree of CGP implementation at their sites, with nurses as a group perceiving less progress in implementation of the guideline recommendations. The focus groups identified only one recommendation, complications of surgery, as being fully implemented at their sites. Categories of barriers and facilitators for implementation of CPGs that emerged from the qualitative analysis included (a) characteristics of CPGs: need for research/evidence, (b) characteristics of CPGs: complexity of design and wording, (c) organizational factors, (d) lack of knowledge, and (e) lack of resources. Conclusions: Although generally SCI physicians and nurses agreed with the CPG recommendations as written, they did not feel these recommendations were fully implemented in their respective clinical settings. The focus groups identified multiple barriers to the implementation of the CPGs and suggested several facilitators/solutions to improve implementation of these guidelines in SCI. Participants identified organizational factors and the lack of knowledge as the most substantial systems/issues that created barriers to CPG implementation.

The Coming of Age for Qualitative Research: Embracing the Diversity of Qualitative Methods

Sharing qualitative research data, improving data literacy and establishing national data services

To plan community-driven health promotion strategies based on a strengths, weaknesses, opportunities, and threats (SWOT) analysis of the healthy eating and physical activity patterns of First Nation (FN) youth. Cross-sectional qualitative and quantitative data used to develop SWOT themes and strategies. Remote, subarctic FN community of Fort Albany, Ontario, Canada. Adult (n = 25) and youth (n = 66, grades 6-11) community members. Qualitative data were collected using five focus groups with adults (two focus groups) and youth (three focus groups), seven individual interviews with adults, and an environmental scan of 13 direct observations of events/locations (e.g., the grocery store). Quantitative data on food/physical activity behaviors were collected using a validated Web-based survey with youth. Themes were identified from qualitative and quantitative data and were analyzed and interpreted within a SWOT matrix. Thirty-two SWOT themes were identified (e.g., accessibility of existing facilities, such as the gymnasium). The SWOT analysis showed how these themes could be combined and transformed into 12 strategies (e.g., expanding and enhancing the school snack/breakfast program) while integrating suggestions from the community. SWOT analysis was a beneficial tool that facilitated the combination of local data and community ideas in the development of targeted health promotion strategies for the FN community of Fort Albany.

Qualitative Approaches, Data, and Analysis in Impact Evaluations

Qualitative research data, such as data from focus groups and in-depth interviews, are increasingly made publicly available and used by secondary researchers, which promotes open science and improves research transparency. This has prompted concerns about the sensitivity of these data, participant confidentiality, data ownership, and the time burden and cost of de-identifying data. As more qualitative researchers (QRs) share sensitive data, they will need support to share responsibly. Few repositories provide qualitative data sharing guidance, and currently, researchers must manually de-identify data prior to sharing. To address these needs, our QDS team worked to identify and reduce ethical and practical barriers to sharing qualitative research data in health sciences research. We developed specific QDS guidelines and tools for data de-identification, depositing, and sharing. Additionally, we developed and tested Qualitative Data Sharing (QuaDS) Software to support qualitative data de-identification. We assisted 28 qualitative health science researchers in preparing and de-identifying data for deposit in a repository. Here, we describe the process of recruiting, enrolling, and assisting QRs to use the guidelines and software and report on the revisions we made to our processes and software based on feedback from QRs and curators and observations made by project team members. Through our pilot project, we demonstrate that qualitative data sharing is feasible and can be done responsibly.

9. Cross-national studies and the analysis of comparative qualitative research

BACKGROUND Mixed methods research is essential to development of patient reported outcome measures, digital technology, and endpoint selection for clinical drug trials, and to advance clinical care, when complex health-related experiences cannot be fully understood by quantitative or qualitative approaches alone. New technology and opportunities for remote data collection have changed the ways in which qualitative and quantitative data can be collected, can enabling researchers to capture human experiences in ways not previously possible. OBJECTIVE This paper describes Perspective Mapping, a newer online interviewing technique that uses mind mapping software to capture in-depth qualitative data inside a quantitative measurement framework to understand and measure individual experiences. METHODS During online interviews, mind-mapping software is used to visually depict participant experiences. Structured concept maps are co-created in real time with participants, focusing on building detailed narrative descriptions about experiences and categorizing these within a predefined quantitative framework, such as the relative importance of different experiences relevant to a phenomenon. The approach combines semi-structured interviewing with technology enhanced card-sorting techniques, allowing participants to define and prioritize what matters most. The method ensures narrative richness alongside structured data collection, facilitating deeper understanding of the phenomenon. RESULTS Perspective Mapping emphasizes participant engagement in data generation and analysis and enables the simultaneous collection of qualitative narratives and quantitative assessment of key concepts. The technique has been successfully applied in research on chronic illness, symptom burden, and digital health technology. Advantages of the approach include systematic collection of qualitative data, transparent and structured data outputs, real-time data validation, and ability to return maps to participants as a form of reciprocity. Pragmatic factors such as interviewer capabilities, participant literacy, interview duration, and technology resources must be considered. CONCLUSIONS Perspective Mapping offers an innovative and engaging way to gather complimentary qualitative and quantitative data remotely. By blending qualitative depth with quantitative structure, the technique supports richer, more actionable insights for health research, policy, and beyond. This technique holds promise for applications in psychology, education, and other social sciences where comprehensive experience mapping is essential. CLINICALTRIAL NA

The authors used qualitative and quantitative data to identify and interpret specific images teens have about smoking and smokers. Qualitative data were collected in 1996 from 793 teenagers participating in 125 focus groups at eight different sites across the United States. Most focus groups were homogeneous with respect to gender, ethnicity, and smoking status. Ages ranged from 12 to 18 years, and about half of the participants were female. The majority of participants (62%) were white and African American, the remainder (38%) were Hispanic, American Indian, and Asian/Pacific Islander. Groups were comprised of smoking and nonsmoking teens. Focus group activities were used to elicit image-related discussions about attitudes, beliefs, and perceptions of smoking. Investigators identified seven consistent and distinctive image themes: Appearance (smoking is dirty and unattractive), Activity (nonsmokers have busy, active lives), Drugs and sex (smokers are substance abusers and are sexually active), Rebellion (smokers belong to rebellious groups), Affect (smokers are depressed, angry, and stressed-out), In control (nonsmokers have self-control and are independent), and Pride (nonsmokers are proud of themselves, their families, and their heritage). A large scale, multi-site qualitative research approach can increase understanding of teen smoking. The identification of distinctive images of smoking can help researchers develop more sophisticated models of the processes of teen smoking than currently exist.