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Network methods to support user involvement in qualitative data analyses: an introduction to Participatory Theme Elicitation.

ABSTRACT: BACKGROUND:While Patient and Public Involvement (PPI) is encouraged throughout the research process, engagement is typically limited to intervention design and post-analysis stages. There are few approaches to participatory data analyses within complex health interventions. METHODS:Using qualitative data from a feasibility randomised controlled trial (RCT), this proof-of-concept study tests the value of a new approach to participatory data analysis called Participatory Theme Elicitation (PTE). Forty excerpts were given to eight members of a youth advisory PPI panel to sort into piles based on their perception of related thematic content. Using algorithms to detect communities in networks, excerpts were then assigned to a thematic cluster that combined the panel members' perspectives. Network analysis techniques were also used to identify key excerpts in each grouping that were then further explored qualitatively. RESULTS:While PTE analysis was, for the most part, consistent with the researcher-led analysis, young people also identified new emerging thematic content. CONCLUSIONS:PTE appears promising for encouraging user led identification of themes arising from qualitative data collected during complex interventions. Further work is required to validate and extend this method. TRIAL REGISTRATION:ClinicalTrials.gov, ID: NCT02455986 . Retrospectively Registered on 21 May 2015.

SUBMITTER: Best P

PROVIDER: S-EPMC5701364 | biostudies-literature | 2017 Nov

REPOSITORIES: biostudies-literature

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Network methods to support user involvement in qualitative data analyses: an introduction to Participatory Theme Elicitation.

Best Paul P Badham Jennifer J Corepal Rekesh R O'Neill Roisin F RF Tully Mark A MA Kee Frank F Hunter Ruth F RF

Trials 20171123 1

<h4>Background</h4>While Patient and Public Involvement (PPI) is encouraged throughout the research process, engagement is typically limited to intervention design and post-analysis stages. There are few approaches to participatory data analyses within complex health interventions.<h4>Methods</h4>Using qualitative data from a feasibility randomised controlled trial (RCT), this proof-of-concept study tests the value of a new approach to participatory data analysis called Participatory Theme Elici ...[more]

PMID: 29169378

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Project description:BackgroundIncreased service user involvement is recommended to improve weak mental health systems in low-and middle-income countries (LMICs). However, involvement is rarely implemented and interventions to support involvement are sparse. In this study we evaluated the acceptability, feasibility and perceived outcomes of an empowerment and training program for service users and health professionals to facilitate service user involvement in mental health system strengthening in rural Ethiopia.MethodsREducing Stigma among HealthcAreProvidErs (RESHAPE) is a training curriculum for service users, their caregivers and aspirational health workers, which uses PhotoVoice methodology, to prepare them in participation of mental health systems strengthening in LMICs. We delivered the RESHAPE training augmented with empowerment content developed in Ethiopia. The interactive face-to-face training was delivered to service users and caregivers (over 10 days), and health professionals (1 day) separately. The study was an uncontrolled, convergent mixed-methods design. The quantitative data consisted of process data, satisfaction questionnaire, and a retrospective pre-test survey. Qualitative data included exit and follow-up in-depth interviews with the service users. Descriptive statistics were performed for quantitative data, and qualitative data were thematically analysed. The findings were integrated through triangulation for convergent themes following analysis.ResultsTwelve service users, 12 caregivers and 18 health professionals were enrolled, and completed the training. Participants valued the content and delivery process; the standard of the training program met their expectations and participation led to positive gains in understanding about mental illness, stigma, service-user involvement and human rights. The qualitative findings identified positive impacts, including increased self-confidence, sense of empowerment, social - and perceived therapeutic benefits.ConclusionsWe found that the RESHAPE training with added content for Ethiopia, delivered using the PhotoVoice methodology, is feasible, acceptable and of value to develop and implement training programmes which can empower service users to be involved in mental health system strengthening in this setting. Further study to assess the impact on health systems strengthening is warranted.

Project description:BackgroundThe period of regular contractions before 4 cm of cervical dilatation is often referred to as the latent phase or early labor. Women find it challenging to prepare for and cope with this phase of labor, and easily accessed web-based information from reliable sources may be useful in this preparation.ObjectiveThe aim of this study is to describe the development of a Norwegian website, Latens.no, for people seeking information on early labor and to explore users' experiences with the website to increase its user-friendliness.MethodsWe developed a website using an iterative process involving a multidisciplinary research team, health personnel, users, a graphic designer, and an expert in software development. We explored the website's user-friendliness using semistructured individual interviews and the think-aloud method. All interviews were audio recorded and transcribed. We then analyzed the participants' feedback on the website.ResultsParticipants included women who had recently given birth to their first baby (n=2), women who were pregnant with their first baby (n=4), and their partners (n=2). Results from participants' experiences completing tasks included positive feedback related to the content of Latens.no, positive feedback related to the website's design, and suggestions for improvement. Participants wanted to find information on early labor on the internet. Moreover, they found the information on the website relevant, trustworthy, and easy to read, and the design was attractive and easy to use. Overall, the participants performed the tasks easily, with few clicks and minimal effort.ConclusionsThe think-aloud method, while performing tasks, allowed for detailed feedback. The participants confirmed the user-friendliness of the website but at the same time provided information enabling improvement. We expect that changes made based on this user-centered design study will further increase the usability and acceptability of Latens.no.

Project description:BackgroundIt is essential to involve service users in efforts to expand access to mental health care in integrated primary care settings in low- and middle-income countries (LMICs). However, there is little evidence from LMICs to guide this process. The aim of this study was to explore barriers to, and facilitators of, service user/caregiver involvement in rural Ethiopia to inform the development of a scalable approach.MethodsThirty nine semi-structured interviews were carried out with purposively selected mental health service users (n = 13), caregivers (n = 10), heads of primary care facilities (n = 8) and policy makers/planners/service developers (n = 8). The interviews were audio-recorded and transcribed in Amharic, and translated into English. Thematic analysis was applied.ResultsAll groups of participants supported service user and caregiver involvement in mental health system strengthening. Potential benefits were identified as (i) improved appropriateness and quality of services, and (ii) greater protection against mistreatment and promotion of respect for service users. However, hardly any respondents had prior experience of service user involvement. Stigma was considered to be a pervasive barrier, operating within the health system, the local community and individuals. Competing priorities of service users included the need to obtain adequate individual care and to work for survival. Low recognition of the potential contribution of service users seemed linked to limited empowerment and mobilization of service users. Potential health system facilitators included a culture of community oversight of primary care services. All groups of respondents identified a need for awareness-raising and training to equip service users, caregivers, service providers and local community for involvement. Empowerment at the level of individual service users (information about mental health conditions, care and rights) and the group level (for advocacy and representation) were considered essential, alongside improved, accessible mental health care and livelihood interventions.ConclusionAs Ethiopia increases access to mental health care, a fundamental barrier to service user involvement is beginning to be addressed. Our study identified further barriers that need to be tackled, including a supportive political climate, and receptiveness amongst stakeholders. The findings will inform the development of a model of service user involvement, which will be piloted and evaluated.

Project description:BackgroundInvolvement of service-users at all levels of the mental health system is a policy imperative in many countries internationally. However, putting policy into practice seems complex; little is known about how best to involve service users and efforts are often criticized for being tokenistic. In low-and-middle income countries, less attention has been given to the roles of service users within mental health systems. The proposed study is part of a larger project intended to develop service-user involvement in mental health system strengthening in Ethiopia. A Theory of Change (ToC) model has already been developed through a participatory approach. This study protocol aims to describe the theoretical background and methods to pilot this model using participatory action research (PAR) and explore participants' experience of involvement.MethodsThe proposed study will apply a PAR approach situated in critical social theory and conduct a phenomenological case study to find out participants' experience of involvement. This will be conducted in three stages. The focus of Stage 1 will be to(i) establish a Research Advisory Group (RAG), and Research Participant Group (RPG) at district and primary healthcare facility levels, respectively, and (ii) identify and prioritize potential areas of concern for involvement in the domains of advocacy, service planning and development, monitoring and improving service quality. In Stage 2, we will work with the RPG to develop a plan of action for the selected area. Stage 3 will aim to assist the RPG to implement and evaluate the plan of action. Process indicators and observation will be combined with in-depth interviews with participants to elicit their experiences of involvement. Thematic content analysis will be used.DiscussionThe participatory approach to mental health service user involvement in health system strengthening employed by this study will support the implementation of solutions through locally relevant and contextualized actions. Findings from this study will contribute to the body of knowledge towards understanding the complexity of implementation of service user involvement and refine the ToC model for transferability to similar settings.

Project description:BackgroundChildren with cancer and their families are at risk for short- and long-term psychosocial difficulties. Screening for psychosocial risk remains inconsistent, leading to inequitable access to psychosocial services. The Psychosocial Assessment Tool (PAT) is an evidence-based caregiver report screener of family psychosocial risk ready for implementation in a nationwide cluster randomized trial that will test two implementation strategies across 18 pediatric cancer centers. The current study, conducted in preparation for the trial, solicited the perspectives of key stakeholders about two proposed implementation strategies identified during previous research which focus on health equity and screening of all families (universal screening). Results were used to refine the implementation strategies for testing in the subsequent trial.MethodsSemi-structured interviews with 19 key stakeholders (parents, health care providers, pediatric oncology organizations, and pediatric healthcare leaders) were conducted regarding the two implementation strategies. Strategy I is a training webinar; Strategy II is training + implementation enhanced resources, which includes a champion at each site and monthly peer support consultation calls. Data were analyzed using directed content analysis with deductively derived codes based on the Interactive Systems Framework and inductive codes based on emerging data.ResultsStakeholder interviews provided rich data to rigorously modify the proposed implementation strategies. Implementation strategies were modified in consistent with these recommendations: engaging providers by framing family psychosocial screening as an opportunity for more efficient and effective practice; setting clear expectations about the importance of screening 100% of children and their families to achieve the goal of universal screening, equity of care, and reduction of disparities; and adapting successful strategies for systematic implementation of screening to ensure optimal engagement with children and their families throughout their care.ConclusionsStakeholder input strengthened implementation strategies by suggesting modifications that emphasized health equity and reduction in health disparities. Using implementation science methods to build on a long-standing program of research provided practical insights about immediate needs of families and historical insights regarding structural inequities such as language differences and access to services. Resulting strategies address all levels of the social ecology for children's cancer care, including the patient, family, provider, healthcare system, and community.Trial registrationNCT04446728 June 23, 2020.

Project description:Background:Isolation precautions are intended to prevent transmission of infectious agents, yet healthcare provider (HCP) adherence remains suboptimal. This may be due to ambiguity regarding the required precautions or to cognitive overload of HCPs. In response to the challenge of changing HCP behaviour, increasing attention should be paid to the role of engineering controls and facility design that incorporate human factors elements. In the current study, we aimed to develop an isolation precaution signage system that provides visual cues, serves as a cognitive aid at the point of care, and removes ambiguity regarding which precautions are necessary (e.g. masks, gowns, gloves, single rooms) when caring for isolated patients. Methods:We employed a user-centred, participatory design approach in which HCPs were actively involved in generating an isolation precaution signage system based on human factors design principles. HCPs were purposefully sampled for each design phase to include a representative sample of potential system users. We conducted front-end analysis through interviews and observations to identify challenges related to the existing signage and to establish design requirements for new signage. This was followed by the creation of user personas, design thinking workshops, and prototyping, which then underwent iterative cycles of evaluation. Graphical symbols were developed and tested for comprehensibility. Results:Front-end analysis revealed several barriers to use of the current signage system such as unclear target audience, low signal-to-noise ratio, and ambiguity regarding the applicable precautions. A comprehensive list of design requirements was generated. The project ultimately resulted in a collection of validated, comprehensible symbols and signs for contact, droplet, and airborne isolation, as well as the identification of several systems-level solutions for work re-organisation to improve compliance with isolation precautions. Conclusions:The introduction of visual cues in the form of signage offers a promising opportunity to make guidelines available directly at the frontline. Anecdotal evidence based on observations and interviews with HCP have shown that the current solution is superior to previous isolation signage. User-centred participatory design was a useful approach that holds potential for further improving design in healthcare settings.

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Network methods to support user involvement in qualitative data analyses: an introduction to Participatory Theme Elicitation.

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Network methods to support user involvement in qualitative data analyses: an introduction to Participatory Theme Elicitation.

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