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Objective: The issue of low consumption among rural households in China has a longstanding history, and the experience of infectious diseases may exacerbate the existing challenges in fostering consumption growth. However, studies that characterize the impact of infectious diseases on household consumption are limited in China. This study aims to explore rural household consumption responses to infectious diseases post-assessment, and identify the underlying mechanisms. Methods: A total of 1,539 rural households from China Family Panel Studies (CFPS) datasets of 2014, 2016, 2018, and 2020 were recruited as the study sample. The presence of infectious disease experience was employed as the independent variable and household consumption as the dependent variable. A panel fixed effects (FE) regression model was initially employed to identify the influence of infectious disease experiences on rural household consumption. The instrumental variable (IV) method was used to address potential endogeneity between independent and dependent variables. Robustness checks such as Propensity Score Matching (PSM) test were employed to ensure the reliability of the findings. Results: The results reveal a statistically significant negative impact of infectious disease experiences on consumption over time, becoming no more significant at around 7-9 years post-disaster. This effect leads to more pronounced consumption deprivation for households with limited health insurance coverage and heightened healthcare resource constraints. The mechanism test indicates that infectious disease experiences affect the consumption levels of rural households through channels that include income constraints, the crowding-out of healthcare expenditure, and risk perception, with the precautionary savings motive acting as a moderator. Furthermore, the diminishing effect of infectious diseases on individual consumption surpasses that of natural disasters. Temporal discrepancy is observed in the impacts of infectious and chronic disease shocks on household consumption. The accumulation of liquid assets emerges as an effective strategy for households to mitigate the impact of infectious disease shocks. Conclusion: The findings underscore the importance of integrating short- and long-term policies to bolster consumption capacity, strategically allocate inter-regional medical resources, and fortify the resilience of rural households against economic risks.

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AIMS: To construct a conceptual framework on the process of family resilience during the first year following childhood leukaemia diagnosis. DESIGN: A longitudinal qualitative interview study. METHODS: A longitudinal qualitative study following a grounded theory methodology was employed. Semi-structured interviews were conducted with parents of children with leukaemia in a general hospital. The participants were recruited through purposive and theoretical sampling and longitudinal engagement was achieved by conducting interviews at 1, 3, 6, and 12 months after the leukaemia diagnosis. The core category and categories were saturated following the enrolment of parents of children with leukaemia. Data collection and analyses were performed simultaneously. RESULTS: Sixteen parents of children with leukaemia participated. The core category of 'families living with childhood leukaemia' refers to the process of family resilience during the first year following childhood leukaemia diagnosis, which includes three phases: (1) destruction and resiliency period; (2) adjustment and consolidation period; and (3) growth and planning period. CONCLUSION: This study explored the dynamic, complex and continuous processes of resilience among families coping with childhood leukaemia during the first year following diagnosis. Further research should design tailored family interventions that characterise the different phases of family resilience, aiming to support family well-being, integrity and functioning. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Both families and healthcare professionals must create an enabling environment that supports families coping with difficulties. Understanding the different phases of family resilience allows healthcare professionals to provide holistic care that meets the demands of families with childhood leukaemia. IMPACT: Unique knowledge emerged about the family's resiliency process when facing childhood leukaemia, suggesting a family-led revolution in understanding and managing childhood leukaemia. Therefore, the development of phased, resilience-based family interventions is imperative. REPORTING METHOD: This study was reported using the COREQ checklist. PATIENT OR PUBLIC CONTRIBUTION: Patients contributed via study participation.

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AIM AND OBJECTIVES: To identify the main concern of patients with acute leukaemia and their family caregivers in the process of coping with the disease and to determine how patients and their family caregivers address these concerns on an ongoing basis. BACKGROUND: Acute leukaemia is a progressive disease that may lead to physical problems and mental stress in patients. It also affects the psychological well-being and quality of life of family caregivers. Nevertheless, few studies explore the behavioural pattern across the trajectories of illness in Chinese patients with acute leukaemia and their family caregivers. DESIGN: Grounded theory. METHODS: Theoretical sampling was performed to collect 14 sets of secondary data from Bilibili platform, literature, articles from WeChat official account, press releases and documentary. A total of 29 participants were selected to participate in semistructured interviews from the haematology department of a tertiary care hospital in Fuzhou, Fujian Province from January 2021 to November 2021. Data collection and analysis were conducted in a synchronous iterative manner until theoretical saturation was reached. Data analysis included open coding, selective coding and constant comparison, et al. The CCOREQ checklist was utilised. RESULTS: This study discovered the main concern (i.e. seeking survival) and main behavioural pattern of how patients with acute leukaemia and their family caregivers addressed this issue. Three decision-making strategies, 'responding' 'accommodating' and 'resisting' also emerged. CONCLUSIONS: This study explored the behavioural pattern of patients with acute leukaemia and their family caregivers in the process of coping with disease. The study found that the main concern of patients with acute leukaemia and their family caregivers, and provided a theoretical basis for disease management and nursing interventions for them in the future. RELEVANCE TO CLINICAL PRACTICE: The findings of this study contribute to nursing knowledge, practice in the field of patients' participation in decision-making. PATIENT OR PUBLIC CONTRIBUTION: Due to the characteristics of grounded theory (no presupposition of research questions), the interviews in this study mainly focus on theory generation. Participants were not asked to assess the burden of the intervention and the time required to participate in the study, as interviews were conducted for theory generation. This study may assist patients and family caregivers in obtaining better understand and adapt to changes across the trajectory of illness, as well as to promote public destigmatisation of acute leukaemia and reforms in family-hospital-community diversified care.

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INTRODUCTION: Lichen planus (LP) is an inflammatory skin disorder that can present in various forms across the body, including lesions on the skin (cutaneous LP [CLP]), scalp (lichen planopilaris [LPP]), and mucosal regions (mucosal LP [MLP]). Qualitative exploration of the patient experience of LP, notably symptoms and impacts on health-related quality of life (HRQoL), is limited. A scarcity of research was also identified relating to emotional wellbeing impacts of CLP patients. Two qualitative studies were conducted with LP patients to address these gaps. METHODS: Study 1 consisted of exit interviews conducted with a subset of adult patients with MLP (n = 5), CLP (n = 4), and LPP (n = 4) enrolled in an LP clinical study in the United States (US) to explore the patient experience. Study 2 consisted of independent qualitative interviews conducted with adult CLP patients (n = 13) from the US and Germany to further explore impacts on emotional wellbeing. RESULTS: Exit interviews found that itch , pain, and skin lesions were most frequently reported as signs/symptoms of LP. Itch and skin lesions were experienced across all LP subtypes, while pain was only reported by CLP and MLP patients. These signs/symptoms impacted HRQoL including emotional wellbeing (frustration, embarrassment), daily activities (oral hygiene, clothing options), social functioning (intimacy, social activities), and physical functioning (chewing/swallowing, opening/moving mouth). Impacts on activities of daily living (ADL) and physical functioning were mostly experienced by MLP patients. Independent qualitative interviews, which further explored impacts of CLP on patients' emotional wellbeing, identified frustration, worry, sadness, embarrassment, and depression as the most frequently experienced. CONCLUSION: The findings contribute to the literature by providing qualitative insights into signs/symptoms and HRQoL impacts of LP, from the adult patient perspective. The findings also highlight the importance of considering assessment of HRQoL impacts in future clinical LP research, particularly impacts on emotional wellbeing when selecting instruments for assessment of HRQoL in the CLP population. TRIAL REGISTRATION: NCT04300296.

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Vaccination has been critical to the decline in infectious disease prevalence in recent centuries. Nonetheless, vaccine refusal has increased in recent years, with complacency associated with reductions in disease prevalence highlighted as an important contributor. We exploit a natural experiment in Glasgow at the beginning of the twentieth century to investigate whether prior local experience of an infectious disease matters for vaccination decisions. Our study is based on smallpox surveillance data and administrative records of parental refusal to vaccinate their infants. We analyse variation between administrative units of Glasgow in cases and deaths from smallpox during two epidemics over the period 1900-1904, and vaccine refusal following its legalization in Scotland in 1907 after a long period of compulsory vaccination. We find that lower local disease incidence and mortality during the epidemics were associated with higher rates of subsequent vaccine refusal. This finding indicates that complacency influenced vaccination decisions in periods of higher infectious disease risk, responding to local prior experience of the relevant disease, and has not emerged solely in the context of the generally low levels of infectious disease risk of recent decades. These results suggest that vaccine delivery strategies may benefit from information on local variation in incidence.

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AIM: The aim of this study was to investigate the lived experience of people with diabetic retinopathy and to understand the impact of the disease on them including the practical problems faced in the day-to-day life. DESIGN: Descriptive qualitative research. METHODS: A convenience sample of 11 patients with diabetic retinopathy who were hospitalized in a tertiary hospitals in Shandong province of China were enrolled. Data were collected using semi-structured in-depth interviews. The six-stage thematic analysis of Braun and Clarke was used for data analysis. RESULTS: Three themes and 12 sub-themes were extracted, namely: countdown to darkness (lack of disease knowledge, bystander's perspective, distrust of grassroots hospitals); Endless abyss (action restrictions, social isolation, stigma, lost of meaning in life, catastrophizing explanations, a heavy burden); Light chaser (craving for light, turning points in behaviour, self-adjustment).

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BACKGROUND: This scoping review reports on studies that collect survey data using quantitative research to measure self-reported oral health status outcome measures. The objective of this review is to categorize measures used to evaluate self-reported oral health status and oral health quality of life used in surveys of general populations. METHODS: The review is guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) with the search on four online bibliographic databases. The criteria include (1) peer-reviewed articles, (2) papers published between 2011 and 2021, (3) only studies using quantitative methods, and (4) containing outcome measures of self-assessed oral health status, and/or oral health-related quality of life. All survey data collection methods are assessed and papers whose methods employ newer technological approaches are also identified. RESULTS: Of the 2981 unduplicated papers, 239 meet the eligibility criteria. Half of the papers use impact scores such as the OHIP-14; 10% use functional measures, such as the GOHAI, and 26% use two or more measures while 8% use rating scales of oral health status. The review identifies four data collection methods: in-person, mail-in, Internet-based, and telephone surveys. Most (86%) employ in-person surveys, and 39% are conducted in Asia-Pacific and Middle East countries with 8% in North America. Sixty-six percent of the studies recruit participants directly from clinics and schools, where the surveys were carried out. The top three sampling methods are convenience sampling (52%), simple random sampling (12%), and stratified sampling (12%). Among the four data collection methods, in-person surveys have the highest response rate (91%), while the lowest response rate occurs in Internet-based surveys (37%). Telephone surveys are used to cover a wider population compared to other data collection methods. There are two noteworthy approaches: 1) sample selection where researchers employ different platforms to access subjects, and 2) mode of interaction with subjects, with the use of computers to collect self-reported data. CONCLUSION: The study provides an assessment of oral health outcome measures, including subject-reported oral health status and notes newly emerging computer technological approaches recently used in surveys conducted on general populations. These newer applications, though rarely used, hold promise for both researchers and the various populations that use or need oral health care.

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The purpose of this study was to explore the experiences of patients attending an innovative technology-enhanced pulmonary rehabilitation program of National Health Found Program in Poland. The study included two groups of patients participating in post-COVID-19 stationary rehabilitation. Patients from group I (127 individuals) contracted COVID-19 in 2020, while patients from group II fell ill in 2021 (68 individuals). The study used a self-administered questionnaire. This study was designed as an acceptability study. In the experience related to COVID-19 in both groups of the respondents, the possibility of undertaking inpatient rehabilitation in a hospital ward played an important and positive role. Patients who experienced COVID-19 symptomatically expected that rehabilitation would eliminate the related dysfunctions, such as reduced respiratory efficiency of the lungs, disorders of the nervous system, and cognitive disorders (the so-called brain fog). All respondents who experienced symptomatic COVID-19 positively assessed the rehabilitation program offered. Among the highest-rated rehabilitation, elements were identified: exercise on a cycle ergometer implemented with video stimulation, group fitness exercises, and breathing exercises. Other innovative forms of rehabilitation were positively evaluated by 10% to 25% of patients.

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BACKGROUND: Chronic pain is a common problem in adolescents that can negatively impact all aspects of their health-related quality of life. The developmental period of adolescence represents a critical window of opportunity to optimize and solidify positive health behaviors and minimize future pain-related disability and impaired work productivity. This research focuses on the development and evaluation of a smartphone-based pain self-management app for adolescents with chronic pain. OBJECTIVE: The objectives of this study were to characterize (1) the feasibility of deploying a mobile health (mHealth) app (iCanCope) to the personal smartphones of adolescent research participants; (2) adherence to daily symptom tracking over 55 consecutive days; (3) participant interaction with their symptom history; and (4) daily pain-related experiences of adolescents with chronic pain. METHODS: We recruited adolescents aged 15-18 years from 3 Canadian pediatric tertiary care chronic pain clinics. Participants received standardized instructions to download the iCanCope app and use it once a day for 55 days. Detailed app analytics were captured at the user level. Adherence was operationally defined as per the relative proportion of completed symptom reports. Linear mixed models were used to examine the trajectories of daily symptom reporting. RESULTS: We recruited 60 participants between March 2017 and April 2018. The mean age of the participants was 16.4 (SD 0.9) years, and 88% (53/60) of them were female. The app was deployed to 98% (59/60) devices. Among the 59 participants, adherence was as follows: low (4, 7%), low-moderate (14, 24%), high-moderate (16, 27%), and high (25, 42%). Most (49/59, 83%) participants chose to view their historical symptom trends. Participants reported pain intensity and pain-related symptoms of moderate severity, and these ratings tended to be stable over time. CONCLUSIONS: This study indicates that (1) the iCanCope app can be deployed to adolescents' personal smartphones with high feasibility; (2) adolescents demonstrated moderate-to-high adherence over 55 days; (3) most participants chose to view their symptom history; and (4) adolescents with chronic pain experience stable symptomology of moderate severity. TRIAL REGISTRATION: ClinicalTrials.gov NCT02601755; https://clinicaltrials.gov/ct2/show/NCT02601755 (Archived by WebCite at http://www.webcitation.org/74F4SLnmc).

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BACKGROUND: Limited data are available on the experiences of patients with autoinflammatory diseases (AIDs) and their families along the path to diagnosis and treatment. We sought to describe these experiences in patients with AIDs including tumor necrosis factor receptor-associated periodic syndrome (TRAPS), mevalonate kinase deficiency/hyperimmunoglobulin D syndrome (MKD/HIDS), and familial Mediterranean fever (FMF). METHODS: Ninety-minute, semi-structured qualitative interviews and 5-day written/video diaries were used to gather information on the experiences of patients with AIDs and their families. RESULTS: Twelve families of patients from the US (TRAPS [n = 4], MKD/HIDS [n = 5], FMF [n = 5]) participated in this study from August to November 2015. The study included two families with multiple afflicted siblings. Patients' ages ranged from 1 to 28 years. Most parents reported realizing that something was seriously wrong with their child after medical emergencies and/or hospitalizations, which initiated the difficult path to diagnosis. For most, the process included multiple specialist visits, extensive and repeated testing, and many misdiagnoses. Over time, 92% of parents reported losing confidence in the healthcare system's ability to find an answer to their child's symptoms, while they also struggled with unsupportive school personnel and dismissive friends and relatives. Patients and their parents reported holding on to memories of "what life was like" before the onset of symptoms and mourning their subsequent loss of "normalcy." Even after diagnosis, patients and parents continued to feel uncertain about what to expect in the future. CONCLUSIONS: All families emphasized the need for efficient early diagnosis of AIDs. Initiatives that improve the speed and accuracy of diagnosis, provide more comprehensive patient education, and support patients and families through the illness have the potential to significantly improve the quality of life of patients with AIDs and their families. Healthcare providers should be aware of the impact of the long diagnostic journey on families and work to create an environment of trust and collaboration in the face of a difficult and prolonged diagnostic process.

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Dementia is the leading cause of cognitive and functional impairment in old age; however, within the scientific community this complex disease is predominantly viewed from a narrow neurobiological and medical perspective, whereas the subjective aspects of dementia, particularly the psychological and social consequences, albeit severe are more or less neglected. In this article the subjective side of experiences of persons with dementia and their relatives are discussed and special aspects of their specific problems and needs during the course of the illness are described. The progress made in supporting persons with dementia and their carers during the last decades is considered and areas where further progress is necessary are delineated.

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Introdução: a fibrose cística é uma doença crônica, multissistêmica, autossômica recessiva, de caráter genético. A expectativa de vida de quem convive com essa doença tem aumentado com os avanços no tratamento e com o controle das infecções. Por isso, o número de pessoas que chegam à idade adulta vem crescendo, o que faz surgirem novas demandas de atenção. Objetivo: compreender a experiência de pessoas adultas que convivem com a fibrose cística. Método: trata-se de um estudo qualitativo fundamentado na fenomenologia social de Alfred Schütz, realizado com doze pessoas adultas, que possuíam fibrose cística, residentes na cidade de São Paulo. Para obtenção dos depoimentos, utilizou-se a entrevista fenomenológica, com as seguintes questões norteadoras: como é para você conviver com a fibrose cística? Considerando que você tem essa doença crônica, quais são seus planos para o futuro? A Fenomenologia Social de Alfred Schütz permitiu a organização e a análise dos resultados. A discussão do conjunto de categorias que emergiram da experiência vivida foi realizada com base na literatura temática, tendo como fio condutor o referencial teórico-metodológico adotado. O projeto foi aprovado pelo Comitê de Ética em Pesquisa com seres humanos da Escola de Enfermagem da Universidade de São Paulo, sob o Parecer nº 1.400.118. Resultados: o grupo de adultos com fibrose cística é aquele que convive com a doença e seu impacto desde a infância/adolescência, fases estas que foram representativas para eles, pois foi o momento em que os sintomas iniciaram e eles se perceberam diferentes dos colegas. As pessoas que fazem parte desse grupo social lidam com o preconceito e com o constrangimento causados pelos sinais e sintomas como a fadiga respiratória, a tosse e ainda o tratamento da doença, o que dificulta a realização das atividades cotidianas. Apesar das dificuldades de conviver com a fibrose cística, eles se mostram resilientes, otimistas e adaptam a rotina de tratamento ao seu cotidiano. No que tange ao futuro, os participantes deste estudo referem o medo da morte. No entanto referem-se ao transplante pulmonar como possibilidade de melhorar a qualidade de vida, isto é, estar livres da rotina rígida do tratamento, ter autonomia, independência, além de poder constituir família, dar continuidade aos estudos, conseguir um emprego e realizar atividades que lhes dão prazer. Conclusões: a fenomenologia social de Alfred Schütz possibilitou compreender a experiência de adultos com fibrose cística no contexto social onde estão inseridos, evidenciando elementos importantes para a elaboração de estratégias de cuidado centradas nas necessidades reais deste grupo. Essas necessidades devem ser refletidas no âmbito assistencial, do ensino e da pesquisa em saúde.

Introduction: Cystic fibrosis is a chronic, multisystem, autosomal recessive, genetic disease. The life expectancy of those living with this disease has increased with advances in treatment and control of infections. Therefore, the number of people who reach adulthood has been increasing, which brings new demands for attention. Objective: to understand the experience of adults living with cystic fibrosis. Method: This is a qualitative study based on the social phenomenology of Alfred Schütz, carried out with twelve adults, who had cystic fibrosis living in the city of São Paulo. To obtain the depositions, the phenomenological interview was used, with the following guiding questions: How do you cope with cystic fibrosis? Considering that you have this chronic disease, what are your plans for the future? The Social Phenomenology of Alfred Schütz allowed the organization and analysis of the results. The discussion of the set of categories that emerged from the lived experience was carried out based on the thematic literature, having as a guiding thread the theoretical-methodological reference adopted. The project was approved by the Committee of Ethics in Research with human beings of the School of Nursing of the University of São Paulo, under Opinion no. 1,400,118. Results: group of adults with cystic fibrosis is the one who lives with the disease and its impact since childhood / adolescence, these phases were representative for them, because it was that moment that the symptoms started and they perceived different from their colleagues. People who are part of this social group deal with the prejudice and the embarrassment caused by signs and symptoms such as respiratory fatigue, coughing and even treatment of the disease, which makes it difficult to perform daily activities. Despite the difficulties of living with cystic fibrosis, they are resilient, optimistic and adapt the routine of treatment to their daily lives. When thinking about the future, people with cystic fibrosis refer to the fear of death, but refer to lung transplantation as a possibility to improve the quality of life, that is, to be free of the rigid routine of treatment, to have autonomy, independence and be able to start a family, continue their studies, get a job and perform activities that give them pleasure. Conclusions: the social phenomenology of Alfred Schultz made it possible to understand the experience of adults with cystic fibrosis in the social context where they are inserted, showing important elements for the elaboration of care strategies focused on the real needs of this group. These needs must be reflected in the healthcare, teaching and health research.

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An early 15th-century burial from a basilica at Polis Chrysochous provides the first archaeological evidence of leprosy in Cyprus, extending the temporal depth and illuminating the biological and social history of this disease on the island. The skeletal remains of a young adult female (age 20-34 years) display pathognomonic features of lepromatous leprosy including maxillary alveolar resorption with antemortem loss of all but one incisor, remodeling of the margin of the nasal sill and resorption of the anterior nasal spine, with diaphyseal remodeling of hand and foot phalanges and the distal third through fifth metatarsals of both feet. Periosteal reaction on distal tibiae and the majority of both fibulae demonstrates tracking of inflammation from the feet to lower legs. Use wear on the remaining maxillary incisor signals participation in common occupational activities in life. Although disfigured and debilitated, burial inside the narthex of the basilica indicates that the community did not ostracize this woman in death. This contextualized analysis provides insight into the biological and social consequences of living with leprosy and illustrates the changing attitudes toward those afflicted with this disease in Cyprus.