"This does my head in". Ethnographic study of self-management by people with diabetes

<p>Abstract</p> <p>Background</p> <p>Self-management is rarely studied 'in the wild'. We sought to produce a richer understanding of how people live with diabetes and why self-management is challenging for some.</p> <p>Method</p> <p>Ethnographic study supplemented with background documents on social context. We studied a socio-economically and ethnically diverse UK population. We sampled 30 people with diabetes (15 type 1, 15 type 2) by snowballing from patient groups, community contacts and NHS clinics. Participants (aged 5-88, from a range of ethnic and socio-economic groups) were shadowed at home and in the community for 2-4 periods of several hours (total 88 visits, 230 hours); interviewed (sometimes with a family member or carer) about their self-management efforts and support needs; and taken out for a meal. Detailed field notes were made and annotated. Data analysis was informed by structuration theory, which assumes that individuals' actions and choices depend on their dispositions and capabilities, which in turn are shaped and constrained (though not entirely determined) by wider social structures.</p> <p>Results</p> <p>Self-management comprised both practical and cognitive tasks (e.g. self-monitoring, menu planning, medication adjustment) and socio-emotional ones (e.g. coping with illness, managing relatives' input, negotiating access to services or resources). Self-management was hard work, and was enabled or constrained by economic, material and socio-cultural conditions within the family, workplace and community. Some people managed their diabetes skilfully and flexibly, drawing on personal capabilities, family and social networks and the healthcare system. For others, capacity to self-manage (including overcoming economic and socio-cultural constraints) was limited by co-morbidity, cognitive ability, psychological factors (e.g. under-confidence, denial) and social capital. The consequences of self-management efforts strongly influenced people's capacity and motivation to continue them.</p> <p>Conclusion</p> <p>Self-management of diabetes is physically, intellectually, emotionally and socially demanding. Non-engagement with self-management may make sense in the context of low personal resources (e.g. health literacy, resilience) and overwhelming personal, family and social circumstances. Success of self-management as a policy solution will be affected by interacting influences at three levels: [a] at micro level by individuals' dispositions and capabilities; [b] at meso level by roles, relationships and material conditions within the family and in the workplace, school and healthcare organisation; and [c] at macro level by prevailing economic conditions, cultural norms and expectations, and the underpinning logic of the healthcare system. We propose that the research agenda on living with diabetes be extended and the political economy of self-management systematically studied.</p

Dietary intake and iodine deficiency in women of childbearing age in an Orang Asli Community close to Kuala Lumpur, Malaysia

A cross-sectional study was conducted in order to determine the prevalence of iodine Deficiency Disorders (IDD) and associated factors in women of childbearing age. The study was conducted in a small Orang Asli (indigenous Malay) community, 46 km south-east of Kuala Lumpur, Malaysia. Women without children or who were not pregnant with their first child were excluded. Of the 45 women eligible, four women did not participate as they were absent from the village for the duration of the study. Thyroid palpation and urinary iodine Level were used to determine the prevalence of IDD. The consumption of foods rich in iodine was determined using a food frequency questionnaire. The study population had a high prevalence (32.4%) of goitre and a very low median urinary iodine level (14.5 +/- 11.5 mu g/L, n = 34). This corresponds to 'severe iodine deficiency' according to World Health Organization classifications. Freshwater fish was the most frequently consumed iodine source. Cassava, which is considered goitrogenic due to its thiocyanate content, was a staple food and was consumed daily by 43% of the participants. Most staple foods were locally produced. Women with goitre had significantly Lower protein and energy intakes than did there without. The IDD prevalence found in this study was similar to the prevalence reported in remote Malaysian communities. Possible factors contributing to IDD in various other studies were dependence on locally produced foods from potentially iodine deficient soils, frequent consumption of cassava, and low intake of seafood. Although this Orang Asli community was close to Kuala Lumpur and not remote, these factors were reflected in the current study. This implies that 'pockets' of LDD in Peninsular Malaysia may be more widespread than previously thought and highlights the need for further investigation of IDD in Peninsular Malaysia

Social, ethical and behavioural aspects of COVID-19

Introduction: Vaccines and drugs for the treatment and prevention of COVID-19 require robust evidence generated from clinical trials before they can be used. Decisions on how to apply non-pharmaceutical interventions such as quarantine, self-isolation, social distancing and travel restrictions should also be based on evidence. There are some experiential and mathematical modelling data for these interventions, but there is a lack of data on the social, ethical and behavioural aspects of these interventions in the literature. Therefore, our study aims to produce evidence to inform (non-pharmaceutical) interventions such as communications, quarantine, self-isolation, social distancing, travel restrictions and other public health measures for the COVID-19 pandemic. Methods: The study will be conducted in the United Kingdom, Italy, Malaysia, Slovenia and Thailand. We propose to conduct 600-1000 quantitative surveys and 25-35 qualitative interviews per country. Data collection will follow the following four themes: (1) Quarantine and self-isolation (2) social distancing and travel restrictions (3) wellbeing and mental health (4) information, misinformation and rumours. In light of limitations of travel and holding in-person meetings, we will primarily use online/remote methods for collecting data. Study participants will be adults who have provided informed consent from different demographic, socio-economic and risk groups. Discussion: At the time of the inception of the study, United Kingdom, Italy, Malaysia, Slovenia and Thailand have initiated strict public health measures and varying degrees of 'lockdowns'; to curb the pandemic. These public health measures will change in the coming weeks and months depending on the number of cases of COVID-19 in the respective countries. The data generated from our study could inform these strategies in real time

Perspectives on public health interventions in the management of the COVID-19 pandemic in Thailand

Background: Any government needs to react quickly to a pandemic and make decisions on healthcare interventions locally and internationally with little information regarding the perceptions of people and the reactions they may receive during the implementation of restrictions. Methods: We report an anonymous online survey in Thailand conducted in May 2020 to assess public perceptions of three interventions in the Thai context: isolation, quarantine and social distancing. A total of 1,020 participants, of whom 52% were women, responded to the survey. Results: Loss of income was the main concern among respondents (>80% for all provinces in Thailand). Traditional media and social media were important channels for communication during the pandemic. A total of 92% of respondents reported that they changed their social behaviour even before the implementation of government policy with 94% reporting they performed social distancing, 97% reported using personal protective equipment such as masks and 95% reported using sanitizer products. Conclusions: This study showed a high level of compliance from individuals with government enforced or voluntarily controls such as quarantine, isolation and social distancing in Thailand. The findings from this study can be used to inform future government measures to control the pandemic and to shape communication strategies

Economic and social impacts of COVID-19 and public health measures: Results from an anonymous online survey in Thailand, Malaysia, the UK, Italy and Slovenia

Objectives To understand the impact of COVID-19 and public health measures on different social groups, we conducted a mixed-methods study in five countries (a € SEBCOV - social, ethical and behavioural aspects of COVID-19'). Here, we report the results of the online survey. Study design and statistical analysis Overall, 5058 respondents from Thailand, Malaysia, the UK, Italy and Slovenia completed the self-administered survey between May and June 2020. Poststratification weighting was applied, and associations between categorical variables assessed. Frequency counts and percentages were used to summarise categorical data. Associations between categorical variables were assessed using Pearson's χ 2 test. Data were analysed in Stata 15.0 Results Among the five countries, Thai respondents reported having been most, and Slovenian respondents least, affected economically. The following factors were associated with greater negative economic impacts: being 18-24 years or 65 years or older; lower education levels; larger households; having children under 18 in the household and and having flexible/no income. Regarding social impact, respondents expressed most concern about their social life, physical health, mental health and well-being. There were large differences between countries in terms of voluntary behavioural change, and in compliance and agreement with COVID-19 restrictions. Overall, self-reported compliance was higher among respondents who self-reported a high understanding of COVID-19. UK respondents felt able to cope the longest and Thai respondents the shortest with only going out for essential needs or work. Many respondents reported seeing news perceived to be fake, the proportion varying between countries, with education level and self-reported levels of understanding of COVID-19. Conclusions Our data showed that COVID-19 and public health measures have uneven economic and social impacts on people from different countries and social groups. Understanding the factors associated with these impacts can help to inform future public health interventions and mitigate their negative consequences. Trial registration number TCTR20200401002

The impact of COVID-19 non-pharmaceutical interventions on the lived experiences of people living in Thailand, Malaysia, Italy and the United Kingdom: a cross-country qualitative study

This qualitative study explores the impact of non-pharmaceutical interventions (NPIs), including social distancing, travel restrictions and quarantine, on lived experiences during the first wave of the COVID-19 pandemic in Thailand (TH), Malaysia (MY), Italy (IT) and the United Kingdom (UK). A total of 86 interviews (TH: n = 28; MY: n = 18; IT: n = 20; UK: n = 20) were conducted with members of the public, including healthcare workers (n = 13). Participants across countries held strong views on government imposed NPIs, with many feeling measures lacked clarity. Most participants reported primarily negative impacts of NPIs on their lives, including through separation, isolation and grief over missed milestones; work-related challenges and income loss; and poor mental health and wellbeing. Nonetheless, many also experienced inadvertent positive consequences, including more time at home to focus on what they most valued in life; a greater sense of connectedness; and benefits to working life. Commonly employed coping strategies focused on financial coping (e.g. reducing spending); psycho-emotional coping (e.g. engaging in spiritual practices); social coping and connectedness (e.g., maintaining relationships remotely); reducing and mitigating risks (e.g., changing food shopping routines); and limiting exposure to the news (e.g., checking news only occasionally). Importantly, the extent to which participants' lived experiences were positive or negative, and their ability to cope was underpinned by individual, social and economic factors, with the analysis indicating some salient differences across countries and participants. In order to mitigate negative and unequal impacts of NPIs, COVID-19 policies will benefit from paying closer attention to the social, cultural and psychological-not just biological-vulnerabilities to, and consequences of public health measures

Normal, but...: living with type 2 diabetes in Bangkok, Thailand

Objectives: To explore how people in Bangkok, Thailand make sense of the challenges associated with living with type 2 diabetes. Methods: Ethnographic research was conducted for a period of 18 months, and included participant observation, documentary analysis, and interviews with health providers, family members and 33 adults with type 2 diabetes. Interviews and analyses were iterative, with longitudinal data drawing attention to shifts in meaning in relation to identity construction and the relevance of this to disease management. Results: People drew on cultural notions of social harmony and bodily imperfection, and ideas of the nature of diabetes as ‘invisible’ while blood sugar levels were controlled, to reconstruct their identity once diagnosed with diabetes. By maintaining their status as ‘normal, but . . .’, people could minimize disruptions in their everyday lives and in relation to others, due to both practices of management and their social effects. Their use of a qualification to their health status (but) explicitly acknowledged certain behavioural and dietary modifications that were necessary to manage their diabetes, but also emphasized their role in self-management. Discussion: The diabetes qualification (‘normal, but . . .’) acted as a bridge between health and illness, enabling people to separate their physical health status, perceived as being particularly flawed by having diabetes, from their ‘normal’ social self. The sustained idea of the normality of the embodied and socially embedded self implied that the disease was under control, ensuring its minimal intrusion into social relationships and practical living

Social, ethical and behavioural aspects of COVID-19

Introduction: Vaccines and drugs for the treatment and prevention of COVID-19 require robust evidence generated from clinical trials before they can be used. Decisions on how to apply non-pharmaceutical interventions such as quarantine, self-isolation, social distancing and travel restrictions should also be based on evidence. There are some experiential and mathematical modelling data for these interventions, but there is a lack of data on the social, ethical and behavioural aspects of these interventions in the literature. Therefore, our study aims to produce evidence to inform (non-pharmaceutical) interventions such as communications, quarantine, self-isolation, social distancing, travel restrictions and other public health measures for the COVID-19 pandemic. Methods: The study will be conducted in the United Kingdom, Italy, Malaysia, Slovenia and Thailand. We propose to conduct 600-1000 quantitative surveys and 25-35 qualitative interviews per country. Data collection will follow the following four themes: (1) Quarantine and self-isolation (2) social distancing and travel restrictions (3) wellbeing and mental health (4) information, misinformation and rumours. In light of limitations of travel and holding in-person meetings, we will primarily use online/remote methods for collecting data. Study participants will be adults who have provided informed consent from different demographic, socio-economic and risk groups. Discussion: At the time of the inception of the study, United Kingdom, Italy, Malaysia, Slovenia and Thailand have initiated strict public health measures and varying degrees of “lockdowns” to curb the pandemic. These public health measures will change in the coming weeks and months depending on the number of cases of COVID-19 in the respective countries. The data generated from our study could inform these strategies in real time