All That Was Not Her

While studying caregiving and chronic illness in families living in situations of economic and social insecurity in Baltimore, anthropologist Todd Meyers met a woman named Beverly. In All That Was Not Her Meyers presents an intimate ethnographic portrait of Beverly, stitching together small moments they shared scattered over months and years and, following her death, into the present. He meditates on the possibilities of writing about someone who is gone—what should be represented, what experiences resist rendering, what ethical challenges exist when studying the lives of others. Meyers considers how chronic illness is bound up in the racialized and socioeconomic conditions of Beverly’s life and explores the stakes of the anthropologist’s engagement with one subject. Even as Meyers struggles to give Beverly the final word, he finds himself unmade alongside her. All That Was Not Her captures the complexity of personal relationships in the field and the difficulty of their ending.

Past and future of HIV infection. A document based on expert opinion

HIV infection is now almost 40 years old. In this time, along with the catastrophe and tragedy that it has entailed, it has also represented the capacity of modern society to take on a challenge of this magnitude and to transform an almost uniformly lethal disease into a chronic illness, compatible with a practically normal personal and relationship life. This anniversary seemed an ideal moment to pause and reflect on the future of HIV infection, the challenges that remain to be addressed and the prospects for the immediate future. This reflection has to go beyond merely technical approaches, by specialized professionals, to also address social and ethical aspects. For this reason, the Health Sciences Foundation convened a group of experts in different aspects of this disease to discuss a series of questions that seemed pertinent to all those present. Each question was presented by one of the participants and discussed by the group. The document we offer is the result of this reflection.

Using Partnerships to Create a Medical Specialty Camp for Youth with Diabetes

Complications associated with a complex chronic illness, specifically, type 1 diabetes, negatively impact youth as they struggle to maintain healthy lifestyles. Type 1 diabetes is the second most common chronic illness affecting youth as well as one of the most psychologically and behaviorally demanding illnesses. Fortunately, organized camps have been shown to positively influence long-term outcomes for youth. Family Diabetes Camp, the only family medical program in the state where this study occurred, was created in collaboration with a local university, a diabetes center at a hospital, and a chapter of the Lions Club. This collaborative camp program aimed to test the effect of active participation in a Family Diabetes Camp upon youth outcomes for campers with type 1 diabetes. Specifically, the purpose was to evaluate the impact of a collaborative medical camp on campers’ resilience and youth developmental outcomes (e.g., independence). Family Diabetes Camp was designed using Outcome-Focused Programming (OFP) to promote positive youth development. The Family Diabetes Camp included 50 campers for the pre-test and post-test (n= 19 males and n= 31 females). While there were no statistically significant differences from pretest (M=4.97, SD= .53) to post-test scores (M=5.01, SD= .46), with t(50) = -.56, p= .57) researchers found a slight increase in resilience from pre to post-test. Using a retrospective measure, campers showed gains in the seven critical youth development outcomes identified by the American Camp Association. Finally, campers learned new knowledge about site injection, carbohydrate counting, and the use of exercise to help manage their diabetes. The impact associated with adapting activities and an environment to encourage, analyze, and challenge resilient behaviors is essential in encouraging independence, shared experiences, and effective disease management for youth living with type 1 diabetes. The camp, solely staffed by volunteers, included physicians, diabetes educators, certified therapeutic recreation specialists, dietitians, nurses, pump specialists, recreation professionals and students, and Lions Club Members. The camp program is unique not only in how it fills a void for youth with type 1 diabetes but how three large organizations work in concert to meet the needs of entire families. These types of data can be instrumental in establishing more camps and other out of school time programming that positively impacts quality of life, health care cost, and mortality among youth with type 1 diabetes.

Navigational health literacy among people with chronic illness

Objectives People with chronic illness are particularly dependent on navigating and using the health care system. This requires navigational health literacy (HL-NAV). The article aims to examine the distribution and predictors of HL-NAV in a sample of chronically ill individuals. Methods Data of 1,105 people with chronic illness from the general population in Germany were collected in December 2019 and January 2020. HL-NAV was assessed by 12 items (score 0–100). Bivariate and multiple linear regression analysis were performed. Results HL-NAV score was 39.1 (SD 27.3). In bivariate analyses, HL-NAV was lower among chronically ill persons aged 65 or above, with low education, limited functional health literacy, low social status, financial deprivation, poor social support, multiple chronic conditions, and an illness duration of 6–10 years. In multivariate analyses, advanced age, lower education, less functional health literacy, lower social status, and less social support remained associated with lower HL-NAV. Discussion The results underline the importance of promoting HL-NAV among people with chronic illness. Strategies should aim at strengthening individual competencies taking into account the social and situational factors but also at reducing the demands placed on chronically ill people by providing user-friendly and trustworthy information on the health care system along the illness trajectory.

Validation of the German Benefit Finding Scale for Youth with chronic conditions

Background Benefit finding, defined as perceiving positive life changes resulting from adversity and negative life stressors, gains growing attention in the context of chronic illness. The study aimed at examining the psychometric properties of the Benefit Finding Scale for Children (BFSC) in a sample of German youth facing chronic conditions. Methods A sample of adolescents with various chronic conditions (N = 304; 12 – 21years) completed the 10-item BFSC along with measures of intra- and interpersonal resources, coping strategies, and health-related quality of life (hrQoL). The total sample was randomly divided into two subsamples for conducting exploratory and confirmatory factor analyses (EFA/CFA). Results EFA revealed that the BFSC scores had a one-dimensional factor structure. CFA verified the one-dimensional factor structure with an acceptable fit. The BFSC exhibited acceptable internal consistency (α = 0.87 – 0.88) and construct validity. In line with our hypotheses, benefit finding was positively correlated with optimism, self-esteem, self-efficacy, sense of coherence, and support seeking. There were no correlations with avoidance, wishful thinking, emotional reaction, and hrQoL. Sex differences in benefit finding were not consistent across subsamples. Benefit finding was also positively associated with age, disease severity, and social status. Conclusions The BFSC is a psychometrically sound instrument to assess benefit finding in adolescents with chronic illness and may facilitate further research on positive adaptation processes in adolescents, irrespective of their specific diagnosis.

Time trends in mental health indicators during the initial 16 months of the COVID-19 pandemic in Denmark

Background The COVID-19 pandemic and its associated national lockdowns have been linked to deteriorations in mental health worldwide. A number of studies analysed changes in mental health indicators during the pandemic; however, these studies generally had a small number of timepoints, and focused on the initial months of the pandemic. Furthermore, most studies followed-up the same individuals, resulting in significant loss to follow-up and biased estimates of mental health and its change. Here we report on time trends in key mental health indicators amongst Danish adults over the course of the pandemic (March 2020 - July 2021) focusing on subgroups defined by gender, age, and self-reported previously diagnosed chronic and/or mental illness. Methods We used time-series data collected by Epinion (N=8,261) with 43 timepoints between 20 March 2020 and 22 July 2021. Using a repeated cross-sectional study design, independent sets of individuals were asked to respond to the Copenhagen Corona-Related Mental Health questionnaire at each timepoint, and data was weighted to population proportions. The six mental health indicators examined were loneliness, anxiety, social isolation, quality of life, COVID-19-related worries, and the mental health scale. Gender, age, and the presence of previously diagnosed mental and/or chronic illness were used to stratify the population into subgroups for comparisons. Results Poorer mental health were observed during the strictest phases of the lockdowns, whereas better outcomes occurred during reopening phases. Women, young individuals (<34 yrs), and those with a mental- and/or chronic illness demonstrated poorer mean time-series than others. Those with a pre-existing mental illness further had a less reactive mental health time-series. The greatest differences between women/men and younger/older age groups were observed during the second lockdown. Conclusions People with mental illness have reported disadvantageous but stable levels of mental health indicators during the pandemic thus far, and they seem to be less affected by the factors that result in fluctuating time-series in other subgroups.

World Interrupted: An Autoethnographic Exploration into the Rupture of Self and Family Narratives Following the Onset of Chronic Illness and the Death of a Mother

Informed by the developments in autoethnography, narrative analysis and biographical sociology this paper seeks to affirm that understanding our narrative enables self-understanding and more importantly enables the understanding of others. Using an autoethnographic approach this paper explores the rupture in self and family identity following two traumatic events: the onset of a chronic illness (Multiple Sclerosis) and the death of a mother. It is the story of the life of my mother, who suffered with MS for 9 years and the story of my sister and myself, who cared for her throughout our childhood up to her death in 2000. The rupture in identity that we suffered interrupted the world in which we lived and exposed the contents of our individual and collective world(s). The themes that emerged from the narratives in this study suggest rupture is experienced as a movement of transgression that leads to movements of regression and progression.

Taking care of oneself and others: The emotion work of women suffering from a rare skin disease

In this article, we analyze the emotion work of women suffering from pemphigus, a rare skin disease. We suggest that this approach sheds new light on the upheavals caused by illness and more generally on the experience of illness itself. Our study draws on a series of 27 interviews with pemphigus patients whose average age was 57. We show that serious and chronic illness does not radically alter the feeling rules in place with close friends and family, despite the uncertainty and emotional upheaval confronting patients. The emotion work they carry out should be understood in light of roles and places established prior to the onset of the disease. Emotion work is embedded in the broader history of relationships with family and friends and prior episodes of illness help create particular configurations and expectations.

Prevalence and determinants of using complementary and alternative medicine for the treatment of chronic illnesses: A multicenter study in Bangladesh

Background While conventional medicine (CM) is commonly used to treat non-communicable diseases (NCDs), complementary and alternative medicine (CAM) is gaining popularity as a healthcare option in Bangladesh. We aimed to investigate the prevalence and factors associated with using CAM solely and using CAM in conjunction with CM for chronic illness treatment among NCD patients in Bangladesh. Methods A multicenter cross-sectional study was conducted, including 549 adults with a confirmed chronic illness diagnosis from three tertiary care hospitals in Dhaka city. Interviews were used to gather socio-demographic data, while medical records were used to get information on chronic illnesses. A multinomial logistic regression model was used to determine the associated factors of utilizing CAM primarily and CAM use in conjunction with CM to manage the chronic disease. Results Out of 549 NCD patients (282 women [51.4%], mean [standard deviation] age 45.4 [12.8] years), 180 (32.8%) ever used CAM for the treatment of chronic illness. Also, 15.3% of patients exclusively used CAM among the NCD patients, while 17.5% used CAM in conjunction with CM. Homeopathy medicine was the most prevalent type of treatment among CAM users (52.2%). Furthermore, 55.5% of CAM users said they used it due to its less adverse effects, and 41.6% trusted its effectiveness for chronic illness. Elderly patients (≥60 years) preferred CAM in complementary with CM, but they did not rely only on CAM. According to the multinomial regression analysis, unmarried patients, predominantly in the younger age group, adopted CAM significantly for chronic illness treatment (Relative risk ratio, RRR = 0.29, 95% CI = 0.12–0.71, reference = Unmarried). Patients in the high-income group used CAM in conjunction with CM (RRR = 6.26, 95% CI = 1.35–18.90, reference: low-income), whereas patients in the high-income group did not rely on CAM alone (RRR = 0.99, 95% CI = 0.34–2.85). Conclusion Although CM remains the mainstream of health care in Bangladesh, CAM services play an essential role in people’s health care, particularly in treating chronic illnesses. Physicians of Bangladesh should be aware that their patients may be using other services and be prepared to ask and answer questions regarding the risks and benefits of using CAM in addition to regular medical care. Thus, clinicians required to follow best-practice guidelines, which are currently not practiced in Bangladesh, when disseminating information regarding integrative techniques that combine CM and CAM approaches.