Fuzzy cognitive mapping in participatory research and decision making: a practice review.

BACKGROUND: Fuzzy cognitive mapping (FCM) is a graphic technique to describe causal understanding in a wide range of applications. This practice review summarises the experience of a group of participatory research specialists and trainees who used FCM to include stakeholder views in addressing health challenges. From a meeting of the research group, this practice review reports 25 experiences with FCM in nine countries between 2016 and 2023. RESULTS: The methods, challenges and adjustments focus on participatory research practice. FCM portrayed multiple sources of knowledge: stakeholder knowledge, systematic reviews of literature, and survey data. Methodological advances included techniques to contrast and combine maps from different sources using Bayesian procedures, protocols to enhance the quality of data collection, and tools to facilitate analysis. Summary graphs communicating FCM findings sacrificed detail but facilitated stakeholder discussion of the most important relationships. We used maps not as predictive models but to surface and share perspectives of how change could happen and to inform dialogue. Analysis included simple manual techniques and sophisticated computer-based solutions. A wide range of experience in initiating, drawing, analysing, and communicating the maps illustrates FCM flexibility for different contexts and skill bases. CONCLUSIONS: A strong core procedure can contribute to more robust applications of the technique while adapting FCM for different research settings. Decision-making often involves choices between plausible interventions in a context of uncertainty and multiple possible answers to the same question. FCM offers systematic and traceable ways to document, contrast and sometimes to combine perspectives, incorporating stakeholder experience and causal models to inform decision-making. Different depths of FCM analysis open opportunities for applying the technique in skill-limited settings.

Perceptions of Inuit Women and Non-Inuit Healthcare Providers on the Implementation of Human Papillomavirus Self-Sampling as an Alternative Cervical Cancer Screening Method in Nunavik, Northern Quebec.

Human papillomavirus (HPV) self-sampling offers a cervical cancer (CC) screening alternative that can address certain barriers to the Papanicolaou test. As part of a larger community-based participatory project in Nunavik, Northern Québec, we travelled to two communities to gather perspectives from Inuit women and healthcare professionals (HCPs) on CC screening services and the possible implementation of HPV self-sampling. We held 10 group discussions with 28 Inuit women and 10 semi-structured interviews with 20 HCPs. The thematic analysis extracted themes reflecting one barrier and seven facilitators to accessing CC screening and the implementation of HPV self-sampling in Nunavik. Themes included, though not limited to, language and communication in health settings, access to culturally responsive educational resources on CC, and the noninvasive nature of HPV self-sampling. This study may serve to contribute to the co-development of a strategy for implementation that is designed according to the needs and priorities of the communities.

Ethnographic study of the barriers and facilitators to implementing human papillomavirus (HPV) self-sampling as a primary screening strategy for cervical cancer among Inuit women of Nunavik, Northern Quebec.

The rate of cervical cancer among Canadian Inuit women is higher than the national average. To date, early detection remains the best strategy for reducing the incidence of cervical cancer and its consequences. Thus, the aim of this study was to explore the barriers and facilitators in implementing human papillomavirus (HPV) self-sampling as a primary screening strategy for cervical cancer among Inuit women of Nunavik in Northern Quebec. A focused ethnographic approach was adopted. Inuit women of Nunavik participated in individual or group interviews during which a semi-structured interview guide was used to determine their perceptions of the barriers and facilitators to implementing HPV self-sampling as a primary screening strategy for cervical cancer. The data were analysed based on Paillé's grounded theory of qualitative analysis. Twenty-eight Inuit women participated in this study. Analysis revealed five subcategories of facilitators and four barriers. Inuit women may embrace the self-sampling method. Importantly, in order to be effective, these strategies must be culturally sensitive and adapted to women's preferences so as to increase sustainability. The results of this study provide the means for integrating the perspectives of Inuit women in implementing HPV self-sampling as a primary screening strategy for cervical cancer in Nunavik. Consideration of these facilitators and barriers might maximise the chance of success and optimise the screening participation rate.

Fuzzy cognitive mapping with Inuit women: what needs to change to improve cervical cancer screening in Nunavik, northern Quebec?

BACKGROUND: Among Canadian Inuit, cervical cancer incidence and mortality rates are up to three times higher than the Canadian average. Cervical cancer is preventable through regular screening which, in Quebec, is opportunistic and requires physical examination and Papanicolaou ("Pap") smears. Since Human Papillomavirus (HPV) is the necessary cause of cervical cancer, HPV testing is a plausible screening alternative. HPV testing by self-sampling also addresses several barriers associated with physical examination and access to healthcare. In a participatory research paradigm, we worked with two communities of Nunavik to explore the possible implementation of HPV self-sampling. METHOD: Key community stakeholders formed an Advisory Committee to guide direct discussions with Inuit women. We presented available facts around cervical cancer, HPV and the female anatomy, and used Fuzzy Cognitive Mapping to collate women's views. A thematic analysis summarized data, adding links and weights to represent the relationship of each factor on the outcome: screening for cervical cancer. RESULTS: According to the 27 Inuit women who participated, the most influential factor in using health services was the cultural awareness of the healthcare provider. A significant barrier to screening was patient lack of information. The principal vector of change - the factor most likely to influence other factors - was the means of communication between the healthcare provider and the patient: visual communication was told to be the most effective. CONCLUSION: Fuzzy Cognitive Mapping is a practical tool for discussing possible health actions with stakeholders and to inform future research. The tool offers a visual aid for discussion across cultural and educational differences. It can help to build the partnerships that incorporate community voices into co-design of interventions that are relevant to and aligned with the needs of those who use them.

HPV Self-sampling in Indigenous Communities: A Scoping Review.

Indigenous women have higher rates of cervical cancer and cervical cancer mortality compared to non-Indigenous women, as well as unique challenges to accessing screening services. Human papillomavirus (HPV) self-sampling has been demonstrated as an effective measure to reach under-screened women. A scoping review identified 19 sources matching selection criteria through a systematic search of PubMed and Scopus completed in May 2018. Analysis revealed that this is a limited field of research; albeit one that has undergone growth in the last 7 years. HPV self-sampling is identified as easy, convenient, comfortable and private and is often preferred over Papanicolaou (Pap) testing. Despite largely positive experiences, several studies indicated that some women lacked confidence in their ability to adequately self-sample. HPV self-sampling may be an effective intervention where Pap testing adherence is low but should include supporting resources and community input so as to best tailor implementations to each community.