Dataset Information

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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Publications

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.

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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:BackgroundZambian adolescent girls and young women (AGYW) have high HIV incidence and face barriers to the use of pre-exposure prophylaxis (PrEP). Parental support improves PrEP use and adherence in some settings, but negative parental attitudes toward HIV prevention may inhibit engagement with AGYW. We explored perceptions of future PrEP methods among AGYW and parents and parent-youth engagement on HIV prevention and PrEP use.MethodsWe conducted a qualitative descriptive study among AGYW and parents of AGYW in five provinces in Zambia in September-October 2021. We conducted 10 focus group discussions (FGDs) and four in-depth interviews (IDIs) with AGYW participants (n = 87) and seven FGDs and four IDIs among parents of AGYW (n = 62). All FGDs and IDIs were audio-recorded, transcribed verbatim, and analyzed to identify qualitative themes.ResultsMost AGYW participants preferred the discreet nature and longer duration of injectable PrEP compared to the PrEP ring and oral PrEP. Many AGYWs reported inability to disclose PrEP use to their parents due to lack of parental support based on cultural taboos against premarital sex. Nevertheless, AGYW participants said they would like to talk to their parents about PrEP so their parents could support their use. Many parents also described difficulties discussing PrEP with their daughters because of cultural and religious beliefs about abstinence from sex before marriage. However, parents acknowledged that the threat of HIV is real and said they need PrEP knowledge and guidance on speaking with their children about HIV prevention and PrEP.ConclusionsAlthough many parents are currently not playing a role in daughters' decisions about PrEP use, both parents and AGYW are willing to engage with each other on HIV prevention issues. To foster parent-child engagement, HIV prevention programs should not only provide information about PrEP but also address social norms that impede discussion of HIV prevention and equip both parents and AGYW with skills and support for such conversations. Community sensitization is also needed as new PrEP products are introduced, to create an enabling environment for parent-child engagement by increasing awareness, countering misconceptions, and reducing stigma.

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Dataset Information

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

Background

Methods

Results

Conclusions

Trial registration

Publications

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

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