How Participatory Health Informatics Catalyzes One Digital Health.

OBJECTIVE: To identify links between Participatory Health Informatics (PHI) and the One Digital Health framework (ODH) and to show how PHI could be used as a catalyst or contributor to ODH. METHODS: We have analyzed the addressed topics within the ODH framework in previous IMIA Yearbook contributions from our working group during the last 10 years. We have matched main themes with the ODH's framework three perspectives (individual health and wellbeing, population and society, and ecosystem). RESULTS: PHI catalysts ODH individual health and wellbeing perspective by providing a more comprehensive view on human health, attitudes, and relations between human health and animal health. Integration of specific behavior change techniques or gamification strategies in digital solutions are effective to change behaviors which address the P5 paradigm. PHI supports the population and society perspective through the engagement of the various stakeholders in healthcare. At the same time, PHI might increase a risk for health inequities due to technologies inaccessible to all equally and challenges associated with this. PHI is a catalyst for the ecosystem perspective by contributing data into the digital health data ecosystem allowing for analysis of interrelations between the various data which in turn might provide links among all components of the healthcare ecosystem. CONCLUSION: Our results suggest that PHI can and will involve topics relating to ODH. As the ODH concept crystalizes and becomes increasingly influential, its themes will permeate and become embedded in PHI even more. We look forward to these developments and co-evolution of the two frameworks.

Defining and Scoping Participatory Health Informatics: An eDelphi Study.

BACKGROUND: Health care has evolved to support the involvement of individuals in decision making by, for example, using mobile apps and wearables that may help empower people to actively participate in their treatment and health monitoring. While the term "participatory health informatics" (PHI) has emerged in literature to describe these activities, along with the use of social media for health purposes, the scope of the research field of PHI is not yet well defined. OBJECTIVE: This article proposes a preliminary definition of PHI and defines the scope of the field. METHODS: We used an adapted Delphi study design to gain consensus from participants on a definition developed from a previous review of literature. From the literature we derived a set of attributes describing PHI as comprising 18 characteristics, 14 aims, and 4 relations. We invited researchers, health professionals, and health informaticians to score these characteristics and aims of PHI and their relations to other fields over three survey rounds. In the first round participants were able to offer additional attributes for voting. RESULTS: The first round had 44 participants, with 28 participants participating in all three rounds. These 28 participants were gender-balanced and comprised participants from industry, academia, and health sectors from all continents. Consensus was reached on 16 characteristics, 9 aims, and 6 related fields. DISCUSSION: The consensus reached on attributes of PHI describe PHI as a multidisciplinary field that uses information technology and delivers tools with a focus on individual-centered care. It studies various effects of the use of such tools and technology. Its aims address the individuals in the role of patients, but also the health of a society as a whole. There are relationships to the fields of health informatics, digital health, medical informatics, and consumer health informatics. CONCLUSION: We have proposed a preliminary definition, aims, and relationships of PHI based on literature and expert consensus. These can begin to be used to support development of research priorities and outcomes measurements.

Social Media, Digital Health Literacy, and Digital Ethics in the Light of Health Equity.

OBJECTIVE: Social media is used in the context of healthcare, for example in interventions for promoting health. Since social media are easily accessible they have potential to promote health equity. This paper studies relevant factors impacting on health equity considered in social media interventions. METHODS: We searched for literature to identify potential relevant factors impacting on health equity considered in social media interventions. We included studies that reported examples of health interventions using social media, focused on health equity, and analyzed health equity factors of social media. We identified Information about health equity factors and targeted groups. RESULTS: We found 17 relevant articles. Factors impacting on health equity reported in the included papers were extracted and grouped into three categories: digital health literacy, digital ethics, and acceptability. CONCLUSIONS: Literature shows that it is likely that digital technologies will increase health inequities associated with increased age, lower level of educational attainment, and lower socio-economic status. To address this challenge development of social media interventions should consider participatory design principles, visualization, and theories of social sciences.

The influence of new information that contradicts common knowledge about earthquake preparedness in Israel: A mixed methods experiment study.

BACKGROUND: A major earthquake in Israel is inevitable. Individual risk perceptions and preparedness can mitigate harm and save lives. The gap between the public's concerns and those of experts is reflected in their differential perceptions regarding the components that influence the occurrence of an earthquake in Israel. Whereas the public believes that geographic location is the critical variable, the experts note additional variables that need to be considered. Common knowledge regarding the risks of earthquake occurrence in Israel is based on a distinction between high and low-risk areas, such that the closer a residential area is to the Great Rift Valley, the higher the risk that an earthquake will occur. OBJECTIVES: To examine the variables affecting public preparedness in Israel (effective communication agent (communicator), high and low earthquake risk areas) and the degree to which experts' knowledge contradicts respondents' common knowledge. METHODS: The study used a mixed-methods approach combining qualitative and quantitative research. The first stage included in-depth interviews with earthquake experts (n = 19). The second stage consisted of an experiment conducted among a representative sample of the public (n = 834). RESULTS: Most people believe that geographical location constitutes the main risk factor for earthquakes in Israel. Yet experts claim that additional variables affect earthquake intensity and damage: building strength, earthquake magnitude, distance from earthquake epicenter, soil type, and interaction between these four. The study found that knowledge of expert information affects public willingness to prepare. The direction of this influence depends on participants' risk perceptions regarding residential area and on degree of consistency with common knowledge. In low-risk areas, added knowledge increased willingness to prepare whereas in high-risk areas this knowledge decreased willingness. CONCLUSION: To turn expert information into common knowledge and to increase earthquake preparedness, the authorities must educate the public to generate a new public preparedness norm.

Role of Participatory Health Informatics in Detecting and Managing Pandemics: Literature Review.

OBJECTIVES: Using participatory health informatics (PHI) to detect disease outbreaks or learn about pandemics has gained interest in recent years. However, the role of PHI in understanding and managing pandemics, citizens' role in this context, and which methods are relevant for collecting and processing data are still unclear, as is which types of data are relevant. This paper aims to clarify these issues and explore the role of PHI in managing and detecting pandemics. METHODS: Through a literature review we identified studies that explore the role of PHI in detecting and managing pandemics. Studies from five databases were screened: PubMed, CINAHL (Cumulative Index to Nursing and Allied Health Literature), IEEE Xplore, ACM (Association for Computing Machinery) Digital Library, and Cochrane Library. Data from studies fulfilling the eligibility criteria were extracted and synthesized narratively. RESULTS: Out of 417 citations retrieved, 53 studies were included in this review. Most research focused on influenza-like illnesses or COVID-19 with at least three papers on other epidemics (Ebola, Zika or measles). The geographic scope ranged from global to concentrating on specific countries. Multiple processing and analysis methods were reported, although often missing relevant information. The majority of outcomes are reported for two application areas: crisis communication and detection of disease outbreaks. CONCLUSIONS: For most diseases, the small number of studies prevented reaching firm conclusions about the utility of PHI in detecting and monitoring these disease outbreaks. For others, e.g., COVID-19, social media and online search patterns corresponded to disease patterns, and detected disease outbreak earlier than conventional public health methods, thereby suggesting that PHI can contribute to disease and pandemic monitoring.

"If only I had . . .": Regrets from women with an unplanned cesarean delivery.

Two hundred twenty-seven women with an unplanned cesarean delivery as their only birth were surveyed on their regrets during childbirth, their personality, childbirth preparation, labor and delivery support, and birth satisfaction. Seventy-three percent of women reported regret which mostly centered on inaction, particularly not advocating for the self. Those with regrets reported lower birth satisfaction (t(220) = 4.84, p < .001). Only emotional support was associated with lower likelihood of experiencing regret (p < .001). Our results suggest the role of support in ameliorating regret and illustrate a need for further study on the role of advocacy in regret and in birth.

'Luckily, I don't believe in statistics': survey of women's understanding of chance of success with futile fertility treatments.

RESEARCH QUESTION: Why are women who face poor prognoses for success in assisted reproductive technology (ART) treatment choosing to pursue procedures using their own eggs, despite receiving information that their chances of success are very low. DESIGN: Cross-sectional study based on an anonymous questionnaire distributed to women aged between 43 and 45 years, undergoing ART using their own oocytes, at six public outpatient fertility clinics and three public in-hospital IVF units in Israel between 2015 and 2016. The main outcome measure was personal estimation of chance to achieve a live birth after the current ART treatment cycle and the cumulative estimated rate after all the treatment cycles the patient intended to undergo. RESULTS: Response rate was 70.0%, with 91 participants of mean age 43.8 ± 0.7 years. Participants estimated their delivery rates after the next ART treatment cycle at 49.0 ± 31.8% (response rate 93.4%) and their cumulative delivery rates after all the ART treatments they would undergo at 57.7 ± 36.3% (response rate 90.1%). This is significantly higher than the predicted success rates of 5% and 15%, respectively (both P < 0.001), which are based on national register data. Nearly one-half of patients rated themselves as having a better than average chance of conception (47.3%). CONCLUSION: Women do not pursue futile treatments because they lack information. Despite being informed of the low success rates of conception using ART treatments, many patients of advanced maternal age have unrealistically high expectations from ART, essentially ignoring their estimated prognosis when deciding on treatment continuation. Future work should examine the psychological reasons behind continuing futile fertility treatments.

Physician experience is associated with greater underestimation of patient pain.

OBJECTIVE: Procedural pain is unique in that physicians simultaneously cause and assess it. Experienced male physicians are known to underestimate their female patients' pain more than other physicians. However, it is unknown whether this also occurs in obstetrics/gynecology, where all patients are females. This study addresses the gap in literature on procedural pain assessment accuracy. METHODS: The present research compares paired pain evaluations from 20 obstetricians/gynecologists and their 92 female patients. RESULTS: Our data demonstrate that patients' reported pain levels (M = 5.53, SD = 2.7) were significantly higher than their physicians' pain estimates (M = 4.89, SD = 2.19), t = 2.64, p < 0.005. The gap between patients' and physicians' pain estimates was greatest among physicians with the greatest procedural experience (M = 1.49, SD = 2.24), f = 5.72, p < 0.005. Male physicians underestimated their patients' pain significantly more than female physicians do, t = 2.27, p < 0.05. CONCLUSION: Our results shed light on systematic underestimation of procedural pain and highlight the significance of experience and sex differences in pain evaluation. PRACTICE IMPLICATIONS: Physicians' experience influences their perception of patient pain while performing procedures. Experienced male physicians, even those who exclusively treat female patients, need to be aware of this ubiquitous bias in assessing their female patients' procedural pain.

Preparedness and support, not personality, predict satisfaction in unplanned caesarean births.

We evaluated what predicts satisfaction following an unplanned caesarean first-time birth. Two hundred and twenty-seven primiparous women who delivered by unplanned caesarean were surveyed on individual difference variables (the 10-Item Big Five Personality Domains scale, the Desirability for Control Scale), interactional variables (the CollaboRATE scale, and measures of emotional support and decisional inclusion during labour and delivery), perceptions of preparedness, and the Birth Satisfaction Scale-Revised Indicator. A multilinear regression was run using birth satisfaction as the dependent variable. Three variables predicted birth satisfaction: emotional support, being included in the decision-making, and present perception of preparedness (R2=.54, p<.001). Participants reported feeling more prepared before the birth experience than they actually were, as viewed in hindsight (p<.001). How prepared a woman perceives she was for the experience she actually had, together with her perceptions of emotional support and decisional inclusion during birth, predict birth satisfaction when birth deviates from her original expectations.Impact statementWhat is already known on this subject? An unplanned caesarean often leads to dissatisfaction with the birth experience and is emotionally challenging for women, increasing the risk of postpartum depression and acute stress disorder. Some recent work indicates personality may influence the birth experience, and other work suggests the quality of interaction between healthcare provider and the woman may predict satisfaction.What the results of this study add? In this study, we sought to identify predictors of satisfaction in women whose first and only birth experience resulted in an unplanned caesarean delivery. Our research demonstrated that over half of the variation in birth satisfaction can be predicted by how prepared women feel they actually were for their experience, by women's perceptions of healthcare providers' efforts made to emotionally support them and to include them in the decision-making process. Personality and a woman's desire for control did not predict satisfaction. These results indicate that birth satisfaction is heavily influenced by what happens before and during the experience and can be amenable by support from a healthcare provider.What the implications are of these findings for clinical practice and/or further research? Preparing women for the possibility of an unplanned caesarean, emotional support, and inclusion in the decision-making process, may reduce dissatisfaction, and potentially distress, after an unplanned caesarean.

Hospital Telehealth Adoption Increased in 2014 and 2015 and Was Influenced by Population, Hospital, and Policy Characteristics.

Background: Telehealth can increase value by reducing gaps in care, access, and cost for patients, providers, and payers. Medicare reimbursement policies aim to increase health access in areas with a provider shortage. Introduction: The influences of telehealth adoption over time are not well known, and would be beneficial for further policy discussion. Materials and Methods: Using the Information Technology Supplement to the American Hospital Association Annual Survey of Acute Care Hospitals, we determined several predictors of telehealth adoption in California hospitals from 2012 to 2015. Results: There were 870 hospitals evaluated. Telehealth adoption was more likely in 2014 and 2015. Compared with those not using telehealth, hospitals using telehealth were less likely to be located in more populated areas (odds ratio [OR] = 0.74; 95% confidence interval [CI]: 0.57-0.98), nonrural areas as defined by metropolitan statistical area (OR = 0.37; 95% CI: 0.20-0.70), and have a higher percentage of employed individuals (OR = 0.0001; 95% CI: 0.00-0.010). Hospitals were more likely to adopt telehealth if they had mobile device integration into the electronic health record (EHR) (OR = 2.97; 95% CI: 1.39-6.33) or a higher percentage of commuters in their ZIP code (OR = 20.24; 95% CI: 1.29-317.4). Telehealth reimbursement for health professional shortage areas did not contribute to increased telehealth adoption. Discussion: The findings suggest how addressing current infrastructural and policy barriers may improve value-based care. Conclusion: Our analysis suggests that telehealth has become more prominent since 2014, and factors such as significant commuting population, mobile device/EHR integration, and nonrural location influence adoption.

Shared Decision-Making in Femoral Versus Radial Cardiac Catheterization.

Shared decision-making is a strategy to assist with patient involvement in medical decisions. One of its pillars is patient knowledge and understanding of the risks and benefits associated with specific procedures. We studied patient knowledge about transradial (TRA) and transfemoral (TFA) cardiac catheterization. A prospective study was conducted in 100 patients hospitalized following diagnostic and therapeutic cardiac catheterization-TRA in 71% of patients and remaining TFA. All patients were presented a standard balanced informed consent outlining risks and benefits. Following catheterization, patients were verbally administered an 11-item open-ended questionnaire to assess knowledge of cardiac catheterization and the associated risks and benefits. A patient knowledge index (PKI) was developed with 1 point given for: identifying the procedure; correctly describing the procedure; identifying at least 1 risk of TRA; and/or TFA; and at least 1 benefit of TRA; and/or TFA. Maximum PKI score was 6. The mean PKI score was 2.6 ± 1.1. A PKI score ≥4 was observed in 21% of patients with only 1 patient obtaining the maximum 6 points. Over 80% of patients were unable to recall procedure risks provided at the time of informed consent. The majority of patients were unable to discriminate between TRA and TFA risks and benefits, PKI 2.52 versus 2.60, respectively (p = 0.718). On multivariate analysis, higher education levels were correlated with increased PKI scores (odds ratio = 0.65, p = 0.014) whereas black race was associated with lower PKI scores (odds ratio = -0.48, p = 0.045). In conclusion, patient retention of information from the informed consent was low. The majority of patients had no preference or deferred to their physician's expertise when deciding TRA compared with TFA. This study identifies challenges with implementing shared decision-making and the need for improved patient education and involvement regarding cardiac catheterization.

Artificial Intelligence for Participatory Health: Applications, Impact, and Future Implications.

OBJECTIVE: Artificial intelligence (AI) provides people and professionals working in the field of participatory health informatics an opportunity to derive robust insights from a variety of online sources. The objective of this paper is to identify current state of the art and application areas of AI in the context of participatory health. METHODS: A search was conducted across seven databases (PubMed, Embase, CINAHL, PsychInfo, ACM Digital Library, IEEExplore, and SCOPUS), covering articles published since 2013. Additionally, clinical trials involving AI in participatory health contexts registered at clinicaltrials.gov were collected and analyzed. RESULTS: Twenty-two articles and 12 trials were selected for review. The most common application of AI in participatory health was the secondary analysis of social media data: self-reported data including patient experiences with healthcare facilities, reports of adverse drug reactions, safety and efficacy concerns about over-the-counter medications, and other perspectives on medications. Other application areas included determining which online forum threads required moderator assistance, identifying users who were likely to drop out from a forum, extracting terms used in an online forum to learn its vocabulary, highlighting contextual information that is missing from online questions and answers, and paraphrasing technical medical terms for consumers. CONCLUSIONS: While AI for supporting participatory health is still in its infancy, there are a number of important research priorities that should be considered for the advancement of the field. Further research evaluating the impact of AI in participatory health informatics on the psychosocial wellbeing of individuals would help in facilitating the wider acceptance of AI into the healthcare ecosystem.

Seamless recording of glucometer measurements among older experienced diabetic patients - A study of perception and usability.

Self-measurement and documentation of blood-glucose are critical elements of diabetes management, particularly in regimes including insulin. In this study, we analyze the usability of iBG-STAR, the first blood glucose meter connectable to a smartphone. This technology records glucometer measurements, removing the burden of documentation from diabetic patients. This study assesses the potential for implementation of iBG-STAR in routine care. Twelve long-term diabetic patients (4 males; median age of 66.5 years) were enrolled in the study. N = 4/12 reported diabetic polyneuropathy. Reported subjective mental workload for all tasks related to iBG-STAR was on average lower than 12 points, corresponding to the verbal code 'nearly no effort needed'. A "Post Study System Usability Questionnaire", evaluated the glucometer at an average value of 2.06 (SD = 1.02) on a 7-Likert-scale (1 = 'I fully agree' to 7 = 'I completely disagree') for usability. These results represent a positive user-experience. Patients with polyneuropathy may experience physical difficulties in completing the tasks, thereby affecting usability. Technologically savvy patients (n = 6) with a positive outlook on diabetes assessed the product as a suitable tool for themselves and would recommend to other diabetic patients. The main barrier to regular use was treating physicians' inability to retrieve digitally recorded data. This barrier was due to a shortcoming in interoperability of mobile devices and medical information systems.

How Women Evaluate Birth Challenges: Analysis of Web-Based Birth Stories.

BACKGROUND: Birth stories provide an intimate glimpse into women's birth experiences in their own words. Understanding the emotions elicited in women by certain types of behaviors during labor and delivery could help those in the health care community provide better emotional care for women in labor. OBJECTIVE: The aim of this study was to understand which supportive reactions and behaviors contributed to negative or positive emotions among women with regard to their labor and delivery experience. METHODS: We sampled 10 women's stories from a popular blog that described births that strayed from the plan. Overall, 90 challenging events that occurred during labor and delivery were identified. Each challenge had an emotionally positive, negative, or neutral evaluation by the woman. We classified supportive and unsupportive behaviors in response to these challenges and examined their association with the woman's emotional appraisal of the challenges. RESULTS: Overall, 4 types of behaviors were identified: informational inclusion, decisional inclusion (mostly by health care providers), practical support, and emotional support (mostly by partners). Supportive reactions were not associated with emotional appraisal; however, unsupportive reactions were associated with women appraising the challenge negatively (Fisher exact test, P=.02). CONCLUSIONS: Although supportive behaviors did not elicit any particular emotion, unsupportive behaviors did cause women to view challenges negatively. It is worthwhile conducting a larger scale investigation to observe what happens when patients express their needs, particularly when challenges present themselves during labor, and health care professionals strive to cater to them.

Invasive Prenatal Diagnostic Testing Recommendations are Influenced by Maternal Age, Statistical Misconception and Perceived Liability.

Funding policy and medico-legal climate are part of physicians' reality and might permeate clinical decisions. This study evaluates the influence of maternal age and government funding on obstetrician/gynecologist recommendation for invasive prenatal testing (i.e. amniocentesis) for Down syndrome (DS), and its association with the physician's assessment of the risk of liability for medical malpractice unless they recommend amniocentesis. Israeli physicians (N = 171) completed a questionnaire and provided amniocentesis recommendations for women at 18 weeks gestation with normal preliminary screening results, identical except aged 28 and 37. Amniocentesis recommendations were reversed for the younger ('yes' regardless of testing results: 6.4%; 'no' regardless of testing results: 31.6%) versus older woman ('yes' regardless of testing results: 40.9%; 'no' regardless of testing results: 7.0%; χ2 = 71.55, p < .01). About half of the physicians endorsed different recommendations per scenario; of these, 65.6% recommended amniocentesis regardless of testing results for the 37-year-old woman. Physicians routinely performing amniocentesis and those advocating for amniocentesis for all women ≥ age 35 were approximately twice as likely to vary their recommendations per scenario. Physicians who perceived risk of liability for malpractice as large were nearly one-and-a-half times more likely to vary recommendations. The results indicate physicians' recommendations are influenced by maternal age, though age is already incorporated in prenatal DS risk evaluations. The physician's assessment of the risk that they will be sued unless they recommend amniocentesis may contribute to this spurious influence.

"A Phenomenal Person and Doctor": Thank You Letters to Medical Care Providers.

BACKGROUND: Thank you letters to physicians and medical facilities are an untapped resource, providing an invaluable glimpse into what patients notice and appreciate in their care. OBJECTIVE: The aim of this study was to analyze such thank you letters as posted on the Web by medical institutions to find what patients and families consider to be good care. In an age of patient-centered care, it is pivotal to see what metrics patients and families apply when assessing their care and whether they grasp specific versus general qualities in their care. METHODS: Our exploratory inquiry covered 100 thank you letters posted on the Web by 26 medical facilities in the United States and the United Kingdom. We systematically coded and descriptively presented the aspects of care that patients and their families thanked doctors and medical facilities for. We relied on previous work outlining patient priorities and satisfaction (Anderson et al, 2007), to which we added a distinction between global and specific evaluations for each of the already existing categories with two additional categories: general praise and other, and several subcategories, such as treatment outcome, to the category of medical care. RESULTS: In 73% of the letters (73/100), physicians were primarily thanked for their medical treatment. In 71% (71/100) of the letters, they were thanked for their personality and demeanor. In 52% cases (52/100), these two aspects were mentioned together, suggesting that from the perspective of patient as well as the family member, both are deemed necessary in positive evaluation of medical care. Only 8% (8/100) of the letters lacked reference to medical care, personality or demeanor, or communication. No statistically significant differences were observed in the number of letters that expressed gratitude for the personality or demeanor of medical care providers versus the quality of medical care (χ21, N=200=0.1, not statistically significant). Letters tended to express more specific praise for personality or demeanor, such as being supportive, understanding, humane and caring (48/71, 68%) but more general praise for medical care (χ21, N=424=63.9, P<.01). The most often mentioned specific quality of medical care were treatment outcomes (30/73, 41%), followed by technical competence (15/73, 21%) and treatment approach (14/73, 19%). A limitation of this inquiry is that we analyzed the letters that medical centers chose to post on the Web. These are not necessarily a representative sample of all thank you letters as are sent to health care institutions but are still indicative of what centers choose to showcase on the Web. CONCLUSIONS: Physician demeanor and quality of interaction with patients are pivotal in how laymen perceive good care, no less so than medical care per se. This inquiry can inform care providers and medical curricula, leading to an improvement in the perceived quality of care.

On the verge of shared decision making in Israel: Overview and future directions.

Israel has a universal-national healthcare system and a progressive health policy legislation which, together, provide its residents with high-level healthcare services and either free or highly subsidized coverage without any pre-existing conditions. However, it is surprising that shared decision making (SDM) practices and policy are not an integral part of Israel's healthcare system. The purpose of this overview is to describe the gap between the organizational-infrastructure compatibility of Israel's universal healthcare policy and the efforts needed to advance SDM as part of routine healthcare practice. Review of recent research and education initiatives will be described as well as recommendations for policy and clinical practice.

Fertility Desires among Women Living with HIV.

OBJECTIVE: Rates of pregnancy among women living with HIV (WLHIV) have increased with the availability of effective HIV treatment. Planning for pregnancy and childbirth is an increasingly important element of HIV care. Though rates of unintended pregnancies are high among women in general, among couples affected by HIV, significant planning and reproductive decisions must be considered to prevent negative health consequences for WLHIV and their neonates. To gain insight into this reproductive decision-making process among WLHIV, this study explored women's knowledge, attitudes and practices regarding fertility planning, reproductive desires, and safer conception practices. It was hypothesized that pregnancy desires would be influenced by partners, families, the potential risk of HIV transmission to infants, and physicians' recommendations. METHODS: WLHIV of childbearing age were recruited from urban South Florida, and completed an assessment of demographics (N = 49), fertility desires and a conjoint survey of factors associated with reproductive decision-making. RESULTS: Using conjoint analysis, we found that different decision paths exist for different types of women: Younger women and those with less education desired children if their partners wanted children; reproductive desires among those with less education, and with less HIV pregnancy-related knowledge, displayed a trend toward additional emphasis on their family's desires. Conversely, older women and those with more education appeared to place more importance on physician endorsement in their plans for childbearing. CONCLUSIONS: Results of this study highlight the importance of ongoing preconception counselling for all women of reproductive age during routine HIV care. Counselling should be tailored to patient characteristics, and physicians should consider inclusion of families and/or partners in the process.