Maria Mayan

Identifying Signals of Suffering by Linking Verbal and Facial Cues

Here, the authors describe microanalytically the two main behavioral states in suffering (enduring and emotional suffering) so that in subsequent research, appropriate comforting responses to ease and relieve suffering can be identified for each behavioral state. Their objectives were to describe the facial expressions of enduring and emotional suffering, and to link them with verbal narrative and thus develop a microanalytic description of each behavioral state. Using Ekmans modified EMFACS, they videotaped interviews with 19 participants and coded co-occurring verbal text and expressions. They also documented differences between each behavioral state and the transitions from enduring to emotional suffering. Enduring and emotional suffering are distinct and identifiable behaviors. These formerly implicit behavioral cues can be used in clinical assessment and research.

Diabetes in pregnancy among First Nations women in Alberta, Canada: a retrospective analysis.

BackgroundIn addition to increasing the risk of adverse birth outcomes, diabetes in pregnancy is thought to be an important driver of the epidemic of type 2 diabetes affecting Canada’s First Nations population. The relative contributions of gestational diabetes mellitus (GDM) and pre-existing diabetes are not well understood. We generated a comprehensive epidemiological profile of diabetes in pregnancy over a 10-year period among the First Nations population of Alberta, Canada.MethodsDe-identified administrative data for 427,058 delivery records were obtained for the years 2000–2009. Pregnancy risk factors and delivery outcomes were described and compared by ethnicity (First Nations vs. non-First Nations) and diabetes status. Age-adjusted prevalence values for GDM and pre-existing diabetes were calculated and were compared by ethnicity. Longitudinal changes over time were also examined. Predictors were explored using logistic regression analysis.ResultsFirst Nations women had more antenatal risk factors and adverse infant outcomes that were compounded by diabetes. First Nations descent was an independent predictor of diabetes in pregnancy (p < 0.001). GDM prevalence was significantly higher among First Nations (6.1%) compared to non-First Nations women (3.8%; p < 0.001), but prevalence values increased significantly over time only in non-First Nations women (4.5 average annual percent change; p < 0.05). The prevalence of pre-existing diabetes was stable over time in both groups, but First Nations women experienced a 2.5-fold higher overall prevalence compared with non-First Nations women (1.5% vs. 0.6%, respectively; p < 0.001).ConclusionsAlthough First Nations women experience a higher overall prevalence of diabetes in pregnancy, the lack of increase in the prevalence over time is encouraging. However, because high-risk pregnancies and poor outcomes are more common among First Nations women, particularly those with diabetes, strategies to improve perinatal care must be implemented.

The Evocative Power of Projective Techniques for the Elicitation of Meaning

A unique project was undertaken by doctoral and postdoctoral students, and their mentor, from diverse backgrounds in health and social sciences to explore their past experiences as participants in a qualitative research training initiative called EQUIPP (Enhancing Qualitative Understanding of Illness Processes and Prevention). The purpose of the project was to create a symbolic representation of the EQUIPP program through the use of projective techniques. The authors examined the meaning of engaging in qualitative research training through images and conceptual metaphors that were subsequently consolidated thematically and then portrayed in the form of a newly constructed logo that was developed with the assistance of a professional graphic designer. Projective techniques proved to be a powerful, evocative tool for eliciting meaning and translating concrete experiences into visual discourse. In this paper, the authors discuss how projective techniques were operationalized and consider their broad implications for qualitative research.

Worth the Risk? Muddled Relationships in Community-Based Participatory Research

Community-based participatory research (CBPR) is a collaborative research approach that has two purposes: (a) to generate knowledge about and (b) to take action to improve the lives of people facing health, social, economic, political, and environmental inequities. The foundation of all CBPR projects is its partnership—its cooperative relationship between community members, service providers, program planners, policy makers, and academics. It is with people—and through relationships—that partnerships are built and sustained. Although relationships between academics and community members are critical to creating knowledge and change, they are overlooked in the literature. We often hear about CBPR “gone wrong,” when tensions and conflicts arise because relationship boundaries become blurred. Our purpose is to expose the muddled relationships that can be created between academics and community members in CBPR projects. Drawing upon our experiences presented in a series of vignettes, we consider the nature of these relationships. We explore whether we conduct, in CBPR, good research at the expense of muddling relationships. Despite the potential for muddled relationships, we believe that CBPR is the best approach for research aimed at achieving a more equitable and just society.

Making Compromises: A Qualitative Study of Sugar Consumption Behaviors During Pregnancy

OBJECTIVE To explore influences on womens sugar consumption behaviors during pregnancy. DESIGN Focused ethnography guided this qualitative study. Contrasting experiences between women with varying sugar intakes were investigated using semi-structured interviews. SETTING Metropolitan area, Canada. PARTICIPANTS Fifteen women with varying intakes of added sugar, who were in the third trimester of their first pregnancy, participated in this study. PHENOMENON OF INTEREST Sugar consumption behaviors during pregnancy. ANALYSIS Interviews were audio-recorded, transcribed, and analyzed using qualitative content analysis to inductively derive themes. RESULTS Pregnant women increased their intake of sugars in an effort to achieve a compromise between meeting nutrition recommendations, lifestyle adjustments, physical symptoms, and cultural norms. Physical symptoms, lack of nutritional guidance, and social pressures were identified as barriers to achieving a diet low in sugars, whereas implementing dietary strategies guided by nutritional knowledge was a facilitator. CONCLUSIONS AND IMPLICATIONS This research provides insights that may be used to design effective interventions to improve maternal health. Strategies to help pregnant women achieve a healthy diet and limit sugar intake should be guided by nutritional knowledge, dietary awareness, and internal motivations to engage in healthy dietary changes.

Developing the concept of self-reformulation

In this article, we argue that the processes that transform the self differ in people who are dying (i.e. self-transcendence), and people who are “facing death” and subsequently recover (i.e. self-reformulation). In this study, we explicate the latter concept. Eighteen participants who were long term survivors, chronically ill or caregivers who had lost a significant other at least six months previously, were interviewed about the course of the illness and in particular about their emergence from suffering. The attributes of self-reformulation identified were an ability to reorder priorities (including maximizing the present, a disregard for material things, an appreciation for ones own abilities and exit from unsatisfying relationships); a need for reciprocity; and a valuing of the experience of suffering. Self-reformulation is considered the goal of rehabilitation and the ultimate state of health. Suggestions for further research are discussed.

Linking Trajectories of Illness and Dying

Despite the large number of theories regarding illness and dying, there is an absence of theoretical work that follows the trajectory from the onset of illness to death. This qualitative study expanded the illness constellation model to include the experience of dying. Following unstructured interviews with 41 individuals (15 ill individuals receiving palliative care, 13 family members of individuals receiving palliative care, and 13 palliative care nurses), data were transcribed and analyzed using NUD*IST 4.0 and the constant comparative method. Until they begin to experience rapid physical deterioration, the response of individuals receiving palliative care to illness is remarkably similar to the experience of other ill individuals. As the ability to maintain self-integrity is lost, however, ill individuals enter a new phase (enduring to die), characterized by progressive withdrawal, not previously outlined in the illness constellation model.

Women’s perceptions of discussions about gestational weight gain with health care providers during pregnancy and postpartum: a qualitative study

BackgroundMaternal body weight is an indicator of the health of a mother and her developing fetus. Risks of poor maternal and fetal health issues increase when women gain too little or too much weight during pregnancy. A study of 600 women from Alberta, Canada, reported approximately 30, 46, 80, and 80% of underweight, healthy weight, overweight, and obese women, respectively, gained in excess of Health Canada gestational weight gain guidelines. Behavioural interventions during pregnancy have shown to be effective at supporting women achieve gestational weight gain (GWG) recommendations and return to their pre-pregnancy weight postpartum, yet few women are counseled about weight gain during pregnancy. A discrepancy exists between health care providers’ (HCP) reported counseling behaviours and women’s perceptions of counseling by HCPs; most HCPs report counseling women about GWG; conversely, most women report not receiving counseling about GWG. This study explored women’s experiences with GWG and their perceptions of discussions about GWG with HCPs during pregnancy and postpartum. This will help to identify gaps in service delivery and highlight areas for improvement that may better support women to achieve GWG recommendations leading to better health outcomes for women and children.MethodsFive focus groups (n = 26) were conducted with women up to 1 year postpartum across the five Alberta health zones. Focus groups were transcribed verbatim and analyzed using qualitative content analysis.ResultsGWG is important to women, for their health and for the health of their baby. In-depth conversations with HCPs about GWG or weight loss do not occur; however, women want the opportunity to discuss weight gain/loss with HCPs. Women would like discussions about gestational weight gain/loss to become part of standard care and offered to all women.ConclusionsWomen suggested that discussions about GWG should occur with all women, and that HCPs should initiate these discussions by asking women how they feel about discussing weight. Conversations should begin early on in pregnancy and continue through to the postpartum period. Interventions assessing discussions about GWG should be implemented and evaluated as this has been identified as a gap in prenatal service delivery.

Contrasting “back home” and “here”: how Northeast African migrant women perceive and experience health during pregnancy and postpartum in Canada

BackgroundInternational migration and the number of migrant women who experience pregnancy and childbirth in receiving countries have significantly increased in the last two decades. Migrant women often have unmet social and economic needs during pregnancy, and are more likely to have problems unaddressed by health care systems. In this qualitative study, we explored migrant women’s perceptions and experiences of health during pregnancy and postpartum, while participating in a perinatal program offered through a community-based organization. Additionally, we examined sociocultural factors that might have shaped women’s health upon migration to the Canadian city of Edmonton, Alberta.MethodsA community-based participatory research approach was used to engage migrant women connected to a community-based perinatal program in Edmonton. A focused ethnography was conducted with four Northeast African communities (Eritrean, Ethiopian, Oromo and Somali), and involved 10 focus groups with women (n = 8, per group) and direct observations of weekly perinatal program activities. Data generation and analysis occurred concurrently, and all generated data were analyzed using qualitative content analysis to inductively derive codes and categories.ResultsWomen expressed their perceptions and experiences of health during pregnancy and postpartum by contrasting their countries of origin with Canada, respectively identified as “back home” and “here”. Differences in social support and the physical environment (both natural and built) between “back home” and “here” were commonly described as factors that shaped their opportunities to eat healthy, be physically active and emotionally well before and after having a baby “here”. Overall, women described that in Canada they lacked the social and environmental factors perceived as key enablers of healthy pregnancies and postpartum.ConclusionA complex network of factors seem to influence Northeast African women’s health during pregnancy and postpartum upon migration to Canada. It is of the utmost importance to provide these women with the immediate sociocultural and environmental factors they need to successfully thrive during pregnancy and postpartum, especially while establishing social and support networks “here”.

Kikiskawâwasow - prenatal healthcare provider perceptions of effective care for First Nations women: an ethnographic community-based participatory research study

BackgroundPregnant Indigenous women suffer a disproportionate burden of risk and adverse outcomes relative to non-Indigenous women. Although there has been a call for improved prenatal care, examples are scarce. Therefore, we explored the characteristics of effective care with First Nations women from the perspective of prenatal healthcare providers (HCPs).MethodsWe conducted an ethnographic community-based participatory research study in collaboration with a large Cree First Nations community in Alberta, Canada. We carried out semi-structured interviews with 12 prenatal healthcare providers (HCPs) that were recorded, transcribed, and subjected to qualitative content analysis.ResultsAccording to the participants, relationships and trust, cultural understanding, and context-specific care were key features of effective prenatal care and challenge the typical healthcare model. HCPs that are able to foster sincere, non-judgmental, and enjoyable interactions with patients may be more effective in treating pregnant First Nations women, and better able to express empathy and understanding. Ongoing HCP cultural understanding specific to the community served is crucial to trusting relationships, and arises from real experiences and learning from patients over and above relying only on formal cultural sensitivity training. Consequently, HCPs report being better able to adapt a more flexible, all-inclusive, and accessible approach that meets specific needs of patients.ConclusionsAligned with the recommendations of the Truth and Reconciliation Commission of Canada, improving prenatal care for First Nations women needs to allow for genuine relationship building with patients, with enhanced and authentic cultural understanding by HCPs, and care approaches tailored to women’s needs, culture, and context.