For professionals in HIV/AIDS

31 May 2016

Open letter to professionals, activists and organizers in HIV/AIDS,

We do not know each other, but I believe we have something important in common, a goal that guides us in our professional lives, and perhaps in our personal lives, too. We have been touched by compassion and the sense of solidarity with others that it confers. We express this in our work in HIV/AIDS.

I am writing because I and my colleagues are asking for your help in the identification of eligible participants and dissemination of questionnaires for a US-Brazil cultural comparison study focusing on psychological adjustment, connectedness and quality-of-life in HIV/AIDS.

I am asking for your help in identifying people who might be interested in participating. In our experience, a personal touch is a crucial piece of these referrals, so if you could also say a few positive words about the project to encourage the people know you to participate, it would be really great. There are many different research programs out there, many with large budgets for participant reimbursement.  To get people’s attention, our modest efforts really need word-of-mouth support from someone they know and respect.  That would be you.

Allow me to present to you a little bit about the project and its aims, in the hopes that you will be interested enough to help us with recruitment.

Introduction

I'm Matthew Porter, a psychology professor at Alliant International University in San Diego, California, in EUAs.  Together with US and Brazilian academic colleagues, especially at Alliant International University in San Diego and the Institute of Social Medicine at Rio de Janeiro State University, I am conducting research on resilience and psychological adjustment among people living with HIV/AIDS (PVHAs).  To recruit participants for the project, we are seeking the help of key people in the US and Brazil who have extensive contact with the HIV+ population--activists, community organizers, leaders of NGOs and advocacy or support groups, doctors, psychologists, social workers, providers of other forms of care (clinical, social or political), or any others whose work has earned the attention of HIV+ folks.  

We (and the whole Strong Hearts Project team, in the US and Brazil) hope you will be interested in the project, and will consider helping us.

The project won a traditional Fulbright Award, an Alliant Provost Award and has been approved by the IRB of the California School of Professional Psychology at Alliant International University and the CEP of the Institute of Social Medicine of the State University of Rio de Janeiro, and the National Commission for Ethics in Research of the Brazilian National Health Council. We believe that this project can create new knowledge in health psychology and public health that can be used to improve the psychosocial support provided to people with HIV/AIDS not only in the US, but in Brazil and worldwide, in other less-industrialized contexts.

The project

The project is formally entitled "Self-regulation of resilience and adjustment in people living with HIV/AIDS", and informally "the Strong Hearts Project". The research has been funded jointly by the US and Brazilian governments, through a Fulbright award aimed at promoting international academic collaboration.   It is a modest international research project that aims to take advantage of the overlap of epidemiological similarities and sociocultural differences between the two countries to clarify the role of key variables likely to vary by culture for health and wellbeing in HIV.  The central research questions are designed to clarify the potential role of subjective experiences of connection in three domains (social, philosophical/spirituality and within-the-self) in shaping resilience and quality-of-life for people living with HIV/AIDS, and the possibility of turning adversity into evolution.

Rationale. The cultures of the US and Brazil tend to be quite different, particularly in variables thought to be important for health and wellbeing in illness:  integration of the individual into social and family relationships, spirituality/religion/philosophy, and self-acceptance versus self-blame. The importance of these three areas, separately, for health and wellbeing among people living with illness has begun to be demonstrated in previous research.  Here we frame them as different forms of the same thing, connectedness (with others, with some higher organizing principle, and within the self), and investigate them in relationship to ideas about culturally predominant tendencies towards collectivism versus individualism and individually differing cognitive-affective representations of health and illness.    These areas interest us not only because of observations reported in existing literature that are linked to health, wellbeing and development, nor for all we have seen first-hand in our HIV/AIDS clinical practices, but for their philosophical and, particularly, their practical importance.   Learning about the importance of connectedness for health can enrich contemporary philosophical/existential conversations.  More importantly, the study's target variables are malleable: we hope that the findings of this research could in the future help design new psychosocial interventions for HIV and other chronic illness conditions.

Offsetting the cultural differences on key study variables, the US and Brazil share a crucial historical accomplishment in HIV/AIDS, that makes the cross-cultural comparison meaningful.  Both countries began to provide free, universal access to highly active antiretroviral treatment (HAART) in the same year, 1996.   Both have also historically seen a high level of social-political activism in favor of human rights for people living with HIV/AIDS.   These historical and epidemiological similarities yield comparable cohorts of pre- and post-HAART diagnoses, and facilitate a cross-cultural comparison of connectedness and its relationship to health and wellbeing outcomes.

Method and pilot studies.   This is a mixed methods study.  Qualitative data are collected through in-depth interviews and will be subjected to coding and phenomenological thematic analysis. Quantitative data are collected with psychological questionnaires validated in both the US and Brazil, filled out by study participants either online or with paper-and-pencil.  Data are analyzed with hierarchical linear modeling.

In pilot studies almost all participants told us they appreciated their experience with the questionnaires. Those who had been concerned the process would be psychologically intrusive in any way, ended up saying that even the most sensitive issues had been addressed in a comprehensive, respectful and compassionate way. Many reported that participating in the project provided them with an opportunity to contribute personally to an important social cause:  improving quality-of-life and reducing stigma in HIV/AIDS.   They had the sense that their contribution was uniquely valuable to the project, as their experience living with HIV is uniquely their own, hard-won and dear.   Many also told us that participating in the questionnaires was an opportunity to rethink and constructively review their lives, past, present and imagined future.

Study aims and dissemination of findings. Besides contributing to the scientific and theoretical understanding of coping with chronic illness, the project aims to generate new knowledge that can help us (providers of psychological, psychosocial and medical support and advocacy for people living with HIV/AIDS), improve our services in this era of longer survival but less consistent quality-of-life. The project focuses on three domains of connectedness (with other people, with a higher organizing principle like philosophy or spirituality and within the self, with unwanted or less desired aspects of the self).  These are, in principal, areas that can improve through new, science-based psychosocial interventions.

Findings will be disseminated to the clinical and scientific communities in the form of articles to be published in academic journals read internationally and presentations at conferences in the US, Brazil and abroad. Our research team has published related background research in the Journal of the American Medical Association (JAMA), Transcultural Psychiatry, the International Journal of Aging and Human Development and the Archives of Behavioral Medicine, and presented research to a range of academic conferences, including the Society for Behavioral Medicine, the Gerontological Society of America, the Association for Contextual and Behavioral Science. We will strive for similarly broad lay and public access to the results of this study in order to make a positive contribution to the structure that supports the well-being of people living with HIV in Brazil, the EUAs, and the world. 

Equally important will be the dissemination of our findings directly to people living with HIV/AIDS, particularly those who have participated in the project. Rather than disappearing from our participant’s sight after they fill out the questionnaires, we will close the circle and invite all our participants to keep up with the progress of the project, hoping they will feel gratified to know what exactly it was, in fact, that their time and openness allowed us to discover and create. One of the ways we will do this in our blog, where preliminary and final results of the study will be published in both English and Portuguese, in non-technical, commonly understood language (blog in English: http://positivityresearch.blogspot.com/; blog in Brazilian Portuguese: http://coracoesfortespesquisa.blogspot.com/).

Next steps. We are currently seeking 140 HIV-positive woman and men, 18 years of age and older to complete a set of questionnaires that takes approximately 50 minutes or less to complete, and can be done online or on paper.  We can help those anyone who wants to participate but is illiterate or who may need other support.  Typically, we receive a referral (to an individual or group), we make initial contact, conduct a brief screening and, where we find eligibility and interest to participate, we proceed to the informed consent, and after that, the questionnaires.  

We have deep respect for personal privacy, particularly around issues of HIV. Using the techniques currently accepted in the social sciences, all personal information disclosed by the participant (HIV status, responses to study questionnaires) will be anonymized and stored carefully, according to IRB approved, US Department of Health and Human Resources condoned, HIPAA-congruent procedures, to protect participants’ privacy as a first priority. Depending on the case, the project may also be able to reimburse reasonable participant reasonable resulting from participation.

Call

We hope that reading this letter you have become convinced not only the value of the project’s aims, method and purpose, but also our authenticity.  We also hope that you are willing to help us a little bit with recruitment.

You are known and trusted by the community.  A positive word from you could be the deciding factor in whether or not someone chooses to participate in the study. 

There are many ways to support this project. You can put us in direct contact with customers, patients, members, colleagues, friends - encouraging them to devote an hour to participate anonymously.  You can send the link to our blog (which has a second link people can follow to fill out the questionnaires), together with positive words to encourage people. Depending on your interest, you can even administer the self-explanatory paper questionnaires to people you know, in the absence of the research team ... or any other way of helping with the recruitment that you feel would be convenient and interesting. We are in real need of your help, and very willing to do what it takes to facilitate your part in the recruitment of participants. We want to adapt our work, to the extent possible, to your needs, thinking that perhaps there is a synergism between our interests in HIV/AIDS.

We know that you are concerned with issues of quality-of-life in HIV/AIDS, and hope you find our project to be something that can help in this area.

Our sincere thanks (my own and from the whole project team), in advance, for any help or advice,

 

Matthew Calvin Porter, Ph.D.

Associate Professor

Alliant International University

San Diego, California