Early assessment of the 10-step patient engagement framework for patient-centred outcomes research studies: the first three steps.

Background: A key principle of patient-centred outcomes research (PCOR) is the engagement of patients and other stakeholders in the research process, but the evidence is still emerging on the impact patient engagement has on the research process. A 10-step framework has been developed to provide methodological guidance for patient engagement throughout the research process. However, the utility of the framework for patient engagement has not been tested in actual research studies. Objective: To describe researcher's overall experiences with engaging patients at the beginning of their PCOR research process. Methods: Twelve in-depth interviews were conducted face-to-face and by telephone with PCOR researchers between November 2014 and January 2015 at an Academic Health Center in the eastern USA. All data were audiotaped and transcribed, and NVivo 10 software was used for data analysis. Results: Four major themes emerged (i) the importance of patient engagement and how it provides 'a perspective you can't get unless you talk to the patient'; (ii) the impact of patient engagement; (iii) challenges and barriers of engagement; and (iv) the realities of patient engagement. Conclusions: Researchers' views illustrate the need to re-evaluate patient engagement in PCOR based on current realities. Given the many challenges to engagement that researchers encounter, it may be more productive to redefine the process of patient engagement so that the issues researchers now face are taken into account in future funding announcements, engagement rubrics and methodology frameworks developed.

"He doesn't love me less. he loves me more": perceptions of women living with HIV/AIDS of partner support in childbearing decision-making.

Our purpose in this study was to understand the importance of male partner support in the childbearing decision-making processes of women living with HIV/AIDS (WLHA) by exploring their perceptions of support after disclosure, prepartum, and postpartum. We conducted in-depth interviews with 15 WLHA who were receiving clinical HIV care at a teaching hospital in Lagos. Results show that all male partners were consistently supportive, except the partner of the only unmarried participant. Other subthemes that emerged include the following: emotional support and reassurance; partnership and faith; and tangible support. We reveal important implications for HIV treatment and care programs.

Factors Associated With HIV Testing Among Men in Haiti: Results From the 2012 Demographic and Health Survey.

HIV testing serves as the gateway to HIV prevention and treatment. However, research examining men's HIV testing behaviors in the Caribbean remains limited. The Andersen Behavioral Model of Health Services Utilization was used to examine factors associated with HIV testing among 7,354 men who participated in the 2012 Demographic and Health Survey conducted in Haiti. Few men (35%) reported having ever been tested for HIV. Logistic regression analyses revealed that HIV testing increased with education and wealth. Marital status was associated with HIV testing, with married men more likely to have been tested (adjusted odds ratio: 2.57, 95% CI [2.07, 3.19]) than unmarried men. Positive attitudes toward people living with HIV, indicated by willing to care for a relative who has HIV/AIDS, was also correlated with higher odds of having been tested (adjusted odds ratio: 1.28, 95% CI [1.08, 1.51]). Men who reported condom use during last sex were more likely to have been tested (odds ratio: 1.58, 95% CI [1.33, 1.88). The findings indicate that HIV testing rates remain low among men in Haiti and more efforts are needed to increase HIV testing among men who are not married, have low level of education, and engage in unprotected sex.

Sociocultural factors influencing HIV disclosure among men in South Africa.

In South Africa, more than 2 million people living with HIV are men aged 15 years and older, and heterosexual intercourse remains the predominant mode of HIV transmission. Knowledge of the sociocultural factors that influence men's decisions about whether, when, or how to disclose seropositive status remains incompletely understood. Using the PEN-3 cultural model as a guide, this study explored the sociocultural factors influencing HIV disclosure among men in South Africa. Four focus group discussions with 27 participants were used to determine the perceptions, enabling and nurturing factors that influence how men chose to reveal or conceal knowledge of their seropositive status. The results revealed that notions of male identity in the South African context, family, and community factors contribute to disclosure and nondisclosure of seropositive status among men living with HIV/AIDS. Future interventions should work to address these factors, as they are necessary with supporting disclosure among men living with HIV.

Using community-based participatory research in patient-centered outcomes research to address health disparities in under-represented communities.

The emergence of patient-centered outcomes research (PCOR) has created a paradigm shift in the way health outcomes research is designed, conducted and disseminated. While PCOR expands the potential for patients to play a key advisory role in every aspect of the research process, community-based participatory research (CBPR) has long provided this opportunity for engaging communities in research. CBPR is an excellent tool for achieving PCOR goals of improving the health of all people by providing them with evidence-based information for making informed healthcare decisions. We propose ways by which PCOR can effectively use CBPR principles to engage patients in general, and specifically patients from underserved communities. The hope is that this will help to reduce and eventually eliminate health disparities.