The Impact of Cybervictimization on the Self-Management of Chronic Conditions: Lived Experiences.

BACKGROUND: Cybervictimization of people with long-term conditions is a disturbing phenomenon with a documented impact on health and well-being. These experiences are primarily examined using quantitative methods, focusing on children and young people. However, research centered on the cybervictimization of adults with chronic conditions is scarce, with limited qualitative input from the victims as experts in their own experiences. OBJECTIVE: This study aims to understand the impact of cybervictimization on the self-management of long-term conditions among adults with chronic conditions and disabilities in the United Kingdom. METHODS: This paper reports the findings from the qualitative phase of a phenomenologically informed mixed methods study. The biographical disruption concept was used to conceptualize the study. In-depth semistructured interviews were conducted with 13 participants with chronic conditions who experienced cybervictimization. A codebook was developed, and a zigzag approach to thematic analysis was used to define and refine themes. Ethical considerations and risk assessment were ongoing during the research process because of the sensitivity of the topic and cases of harassment. RESULTS: Cybervictimization has direct and indirect impacts on the self-management of chronic conditions. This impact was verified across 6 overarching themes that emerged from this study. First, biomedical events included overall health deterioration because of existing conditions, new diagnoses, and subjective physical complaints. Second, the impact on mental health was perceived through psychological consequences and psychiatric disorders that developed after or during this traumatic experience. Third, the multilevel impact theme focused on disrupting the strategies for coping with health conditions and involved unplanned changes to victims' health management priorities. Fourth, the impact of complexity reflected the perceived uniqueness in each case, intersectionality, struggle to obtain formal support, and subsequent health complications. Fifth, social network involvement comprised the effects of social isolation, victim blaming, and deception. Finally, the disability discrimination theme focused on prejudice, issues on inclusion, and hostility in society, with subsequent effects on well-being. CONCLUSIONS: People with long-term conditions experienced different forms of cybervictimization, all disruptive with various effects on health. Disability discrimination was a prominent finding to be further investigated. This paper reports the impact as themes to guide further research and practice, with the recognition that long-term conditions and impairments are not a homogeneous group. Despite the devastating consequences, there are positive points that strengthen potential interventions. Awareness-raising campaigns, training of support channels, and multidisciplinary research are recommended to tackle this issue and initiate change.

Cybervictimization of Adults With Long-term Conditions: Cross-sectional Study.

BACKGROUND: People living with chronic conditions and disabilities experience harassment both offline and on the web. Cybervictimization is an umbrella term for negative web-based experiences. It has distressing consequences on physical health, mental well-being, and social relationships. These experiences have mostly been documented among children and adolescents. However, the scope of such experiences is not well documented among adults with long-term conditions, and the potential impact has not been examined from a public health perspective. OBJECTIVE: This study aimed to examine the scope of cybervictimization among adults living with long-term conditions in the United Kingdom and the perceived impact on self-management of chronic conditions. METHODS: This paper reports the findings of the quantitative phase of a mixed methods study in the United Kingdom. This cross-sectional study targeted adults aged ≥18 years with long-term conditions. Using a web-based link, the survey was shared on the web via 55 victim support groups, health support organizations, and social media accounts of nongovernmental organizations and activists such as journalists and disability campaigners. People with long-term conditions were asked about their health conditions, comorbidities, self-management, negative web-based experiences, their impact on them, and support sought to mitigate the experiences. The perceived impact of cybervictimization was measured using a set of questions on a Likert scale, frequency tables, and the Stanford Self-Efficacy for Managing Chronic Diseases Scale. Demographic data and the impact on self-management were cross-tabulated to identify the demographic characteristics of the targeted individuals and potential conditions with complications and highlight directions for future research. RESULTS: Data from 152 participants showed that almost 1 in every 2 adults with chronic conditions was cybervictimized (69/152, 45.4%). Most victims (53/69, 77%) had disabilities; the relationship between cybervictimization and disability was statistically significant (P=.03). The most common means of contacting the victims was Facebook (43/68, 63%), followed by personal email or SMS text messaging, each accounting for 40% (27/68). Some participants (9/68, 13%) were victimized in web-based health forums. Furthermore, 61% (33/54) of victims reported that experiencing cybervictimization had affected their health condition self-management plan. The highest impact was on lifestyle changes such as exercise, diet, avoiding triggers, and avoiding excessive smoking and alcohol consumption. This was followed by changes to medications and follow-ups with health care professionals. Most victims (38/55, 69%) perceived a worsened self-efficacy on the Self-Efficacy for Managing Chronic Diseases Scale. Formal support was generally rated as poor, with only 25% (13/53) of victims having disclosed this experience to their physicians. CONCLUSIONS: Cybervictimization of people with chronic conditions is a public health issue with worrying consequences. This triggered considerable fear and negatively influenced the self-management of different health conditions. Further context- and condition-specific research is needed. Global collaborations to address inconsistencies in research are recommended.

Assessment of non-communicable disease related lifestyle risk factors among adult population in Bangladesh.

Non-communicable diseases (NCDs), which can largely be prevented by controlling avoidable lifestyle-related risk factors, are rapidly penetrating the entire world, including developing countries. The present study aimed to assess NCD lifestyle risk factors among the adult population in Bangladesh. The data used in the study were collected as part of a population-based cross-sectional survey covering rural and urban areas of Bangladesh conducted in 2015-16 (N=11,982 adults aged ≥35 years). The lifestyle factors considered were diet (daily fruit and vegetable consumption and extra salt intake with meals), sleeping patterns, smoking, smokeless tobacco consumption, and physical activity. The study found that approximately 18.5% of participants had a non-daily consumption of fruit or vegetables, 46.6% used extra salt with their meals, 11.8% reported sleeping <7 hours daily, 25.7% smoked tobacco, 60.9% used smokeless tobacco and 69.7% were less physically active. The prevalence of improper lifestyle practices relevant to NCDs, such as an inadequate diet, poor sleeping pattern, tobacco consumption, and low physical activity, was significantly higher among older adults, women, the uneducated, the unemployed, urban dwellers, and people from rich households. The study found that NCD-related lifestyle characteristics were poorly compliant with standard guidelines among many adult populations in Bangladesh. The findings can inform preventative strategies to control the overwhelming NCD burden in Bangladesh, such as the promotion of physical exercise, healthy eating, and the cessation of the use of tobacco products.

Cyber-Victimization of People With Chronic Conditions and Disabilities: A Systematic Review of Scope and Impact.

The victimization of individuals with chronic conditions or disabilities is prevalent with severe impact at psychological and physiological levels. With the increasing use of technology these experiences were further reshaped. This systematic review aimed at scoping the experiences of cyber-victimization of people living with chronic conditions or disabilities and examine the documented impact on them. Following a four-stage search strategy in several databases including MEDLINE, Embase, PsychINFO, CINAHL, Cochrane and snowballing of references, a total of 2,922 studies were scanned and 10 studies were eventually included. Quality assessment was done in two phases using tools specific to observational studies and cyber-victimization research. A narrative synthesis of reported results covered a total of 3,070 people. Sample size ranged between 42 and 823 participants, and the age range was 6-71 years with a majority of White ethnic backgrounds. Most studies (n=9) were cross sectional. The prevalence range of cyber-victimization was 2%-41.7% based on variable definitions, duration and methods. Targeted conditions included physical impairments, intellectual disabilities and specific chronic diseases. The most common documented impact was psychological/psychiatric, mainly depression followed by anxiety and distress. Somatic health complaints and self-harm were also reported. We concluded that people with chronic conditions and disabilities were consistently at higher risk of victimization with devastating health complications. Research gaps were identified such as the need to address more conditions and acknowledge differences between heterogeneous health conditions. Other recommendations include allowing flexibility and accountability to patients/victims in research design, education on victimization and health consequences, and improving primary care.

The mental health, quality of life and life satisfaction of internally displaced persons living in Nakuru County, Kenya.

BACKGROUND: Internally displaced persons (IDPs) are among the most vulnerable people in the world today. Previous research highlights that conflict-induced forced displacement can cause problems with mental health and wellbeing. This study aimed to contribute to this body of knowledge by investigating the mental health, quality of life, and life satisfaction among IDPs living in Nakuru, Kenya. METHODS: A questionnaire that included the General Health Questionnaire-12, Satisfaction with Life Scale, and a modified version of the WHO Quality of Life-BREF tool was used for data collection. The questionnaire also included an open-ended question inviting qualitative responses about their experience as an IDP. The questionnaire was distributed through a three-stage sampling approach across four refugee camps from four regions of the Nakuru County in Kenya. RESULTS: One hundred IDPs participated in this study. All participants scored substantially higher than the applied GHQ-12 threshold for caseness (mean GHQ-12 score = 28.7, SD = 3.6). Quality of life and life satisfaction scores were also very poor (M = 10.24, SD = 1.9; M = 6.82, SD = 1.5 respectively). The qualitative results reflected these findings with statements reflecting suicidal thoughts, unhappiness with the government, lack of support, and fear for themselves and their children. Significantly higher GHQ-12 scores were found among older IDPs (rho = .202, sig = .046), widowers compared to married IDPs (mean difference = -2.41, SE = .885, sig = .027), while lower scores were found among IDPs who reported having friends as a source of support (U = 834, sig = .045), while quality of life scores were higher among IDPs who reported receiving governmental support (U = 248, sig = .018). CONCLUSION: The findings revealed poor levels of mental health, quality of life and life satisfaction. Older, widowed IDPs and those who did not perceive support from friends or the government were found to be at the highest risk of poor health and wellbeing.

Health, lifestyle, belief and knowledge differences between two ethnic groups with specific reference to tobacco, diet and physical activity.

AIMS: To compare physical activity levels, body mass index, habitual diet, tobacco use and prevalence of non-communicable disease between the two ethnic groups and to identify predictors for differences between groups. BACKGROUND: Tobacco use, poor diet and physical inactivity are major lifestyle risk factors for chronic cardiovascular diseases, certain cancers, diabetes and chronic lung diseases. There are higher risk and incidence of these diseases in some ethnic groups, for example Asians have higher incidence of diabetes. DESIGN: Cross sectional survey. METHODS: Cross sectional survey of Asians of Indian descent and white British adults conducted between October-December 2009. Main outcome variables were lifestyle behaviours and BMI. Self-reported disease diagnosis was also collected. In a regression analysis, predictors of outcome variables were demographic variables and beliefs/attitudes/knowledge towards lifestyle behaviours. RESULTS/FINDINGS: Body mass index, tobacco use and non-communicable disease (except diabetes) were lower in Indians. Indians reported lower physical activity levels and greater salt use than Whites. Tobacco use was higher in Whites, but knowledge, attitudes and beliefs were similar between Whites and Indians. CONCLUSION: Health risk behaviour and morbidity are different between the two ethnic groups. Gender, age, educational level, beliefs, attitudes and knowledge do not explain these differences. Health promotion that aims to improve knowledge will probably not work and innovative methods are needed to improve health in high risk groups.

Sickle cell, habitual dys-positions and fragile dispositions: young people with sickle cell at school.

The experiences of young people living with a sickle cell disorder in schools in England are reported through a thematic analysis of forty interviews, using Bourdieu's notions of field, capital and habitus. Young people with sickle cell are found to be habitually dys-positioned between the demands of the clinic for health maintenance through self-care and the field of the school, with its emphases on routines, consistent attendance and contextual demands for active and passive pupil behaviour. The tactics or dispositions that young people living with sickle cell can then employ, during strategy and struggle at school, are therefore fragile: they work only contingently, transiently or have the unintended consequences of displacing other valued social relations. The dispositions of the young people with sickle cell are framed by other social struggles: innovations in school procedures merely address aspects of sickle cell in isolation and are not consolidated into comprehensive policies; mothers inform, liaise, negotiate and advocate in support of a child with sickle cell but with limited success. Reactions of teachers and peers to sickle cell have the enduring potential to drain the somatic, cultural and social capital of young people living with sickle cell.

Disclosure and sickle cell disorder: a mixed methods study of the young person with sickle cell at school.

Sickle cell is a leading genetic condition, both globally and in England. Little research has been conducted into the experiences of young people with sickle cell at school. A mixed methods study (May 2007-September 2008) based on 569 questionnaires and 40 taped interviews with young people living with sickle cell disorder (SCD) in England found that students with SCD are faced with a dilemma as to whether or not to disclose their sickle cell to teachers and pupils: the latent and hidden characteristics of their symptoms make it possible, in Goffmanesque terms, to "pass". However the variable and unpredictable course of sickle cell is a reminder of Goffman's notion of being "discreditable". We found that teacher or pupil knowledge that a young person has sickle cell is not statistically associated with reported better treatment of young people with SCD at school. Analysis of interviews suggests most young people favour disclosing their sickle cell status (on the basis that teachers will then know what actions to take in the face of bouts of illness and in terms of making allowances for illness or school absences). A minority disagreed because disclosure was felt to attract unwarranted attention or disabling attitudes. Attitudes to disclosing to peers were more varied: either for or against disclosure to peers, or ambivalent in that they felt a tension between acknowledging the reality of their sickle cell, and not wanting it to be a central part of their identity. Some health promotion advice appears to assume that teacher and/or peer awareness is the key to improving school experience for young people with SCD, but this is not borne out by this study. Rather a change in wider school environments is required such that young people with SCD are supported irrespective of whether they themselves foreground or play down their disabled identity.