2,396 research outputs found

    What causes Fibromyalgia? An online survey of patient perspectives.

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    Fibromyalgia is a severe chronic pain condition that affects every aspect of life. Causes of the condition remain unclear, and quantitative research cannot account for patients’ personal illness narratives and perceptions. This online survey gathered qualitative accounts of the perceived causes of their condition from 596 people with Fibromyalgia, which were analyzed thematically. Themes were 'Bodily Assault, Ill-health and Change;' 'Emotional Trauma and Distress;' 'Stress and Vulnerability' and 'Explaining and Authenticating Fibromyalgia.' Discussion focuses on the complexity of causation, the importance of understanding and having symptoms validated, and the potential for benefiting from patient expertise in building better practitioner-client relationships

    Decadal re-evaluation of contaminant exposure and productivity of ospreys (Pandion haliaetus) nesting in Chesapeake Bay Regions of Concern

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    The last large-scale ecotoxicological study of ospreys (Pandion haliaetus) in Chesapeake Bay was conducted in 2000-2001 and focused on U.S. EPA-designated Regions of Concern (ROCs; Baltimore Harbor/Patapsco, Anacostia/middle Potomac, and Elizabeth Rivers). In 2011-2012, ROCs were re-evaluated to determine spatial and temporal trends in productivity and contaminants. Concentrations of p,p\u27-DDE were low in eggs and below the threshold associated with eggshell thinning. Eggs from the Anacostia/middle Potomac Rivers had lower total PCB concentrations in 2011 than in 2000; however, concentrations remained unchanged in Baltimore Harbor. Polybrominated diphenyl ether flame retardants declined by 40%, and five alternative brominated flame retardants were detected at low levels. Osprey productivity was adequate to sustain local populations, and there was no relation between productivity and halogenated contaminants. Our findings document continued recovery of the osprey population, declining levels of many persistent halogenated compounds, and modest evidence of genetic damage in nestlings from industrialized regions

    The relationship between adult attachment and coping with brain tumour:The mediating role of social support

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    From Crossref via Jisc Publications RouterHistory: epub 2019-12-26, issued 2019-12-26Article version: Vo

    Organizational Stress in High-Level Field Hockey: Examining Transactional Pathways Between Stressors, Appraisals, Coping, and Performance Satisfaction

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    This study investigated transactional pathways between organizational stressors and their 28 underpinning situational properties, appraisals, coping, perceived coping effectiveness (PCE) 29 and performance satisfaction in athletes. Ten high-level field hockey players were 30 interviewed. Data relating to stressors, situational properties, appraisals and coping were 31 analysed using directed content analysis. Mean PCE scores were calculated and subjective 32 performance satisfaction data were categorised as satisfied, neutral, or dissatisfied. A variety 33 of organizational stressors was reported, which were underpinned by five situational 34 properties. Challenge, threat and harm/loss appraisals were experienced and problem solving 35 was the most commonly reported family of coping. High PCE was not always associated with 36 performance satisfaction. Performance satisfaction was, however, linked to the appraisal 37 experienced. A battery of stress management techniques and ways of coping is useful for 38 optimising appraisals and alleviating negative outcomes of stress

    Interaction of Stress, Lead Burden, and Age on Cognition in Older Men: The VA Normative Aging Study

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    BACKGROUND. Low-level exposure to lead and to chronic stress may independently influence cognition. However, the modifying potential of psychosocial stress on the neurotoxicity of lead and their combined relationship to aging-associated decline have not been fully examined. OBJECTIVES. We examined the cross-sectional interaction between stress and lead exposure on Mini-Mental State Examination (MMSE) scores among 811 participants in the Normative Aging Study, a cohort of older U.S. men. METHODS. We used two self-reported measures of stress appraisal-a self-report of stress related to their most severe problem and the Perceived Stress Scale (PSS). Indices of lead exposure were blood lead and bone (tibia and patella) lead. RESULTS. Participants with higher self-reported stress had lower MMSE scores, which were adjusted for age, education, computer experience, English as a first language, smoking, and alcohol intake. In multivariable-adjusted tests for interaction, those with higher PSS scores had a 0.57-point lower (95% confidence interval, -0.90 to 0.24) MMSE score for a 2-fold increase in blood lead than did those with lower PSS scores. In addition, the combination of high PSS scores and high blood lead categories on one or both was associated with a 0.05-0.08 reduction on the MMSE for each year of age compared with those with low PSS score and blood lead level (p < 0.05). CONCLUSIONS. Psychological stress had an independent inverse association with cognition and also modified the relationship between lead exposure and cognitive performance among older men. Furthermore, high stress and lead together modified the association between age and cognition.National Institutes of Health (R01ES07821, R01HL080674, R01HL080674-02S1, R01ES013744, ES05257-06A1, P20MD000501, P42ES05947, ES03918-02); National Center for Research Resources General Clinical Research Center (M01RR02635); Leaves of Grass Foundation; United States Department of Veterans Affair

    Managing multiple goals during fertility treatment: An interpretative phenomenological analysis

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    This study investigated how men and women made sense of multiple goals during fertility treatment. Both members of three heterosexual couples participated in two or three semi-structured interviews over 6 months, producing 14 accounts, which were analysed using interpretative phenomenological analysis. The goal of biological parenthood dominates assumptions in infertility research, but its importance varied between participants, who balanced that goal with retaining emotional well-being, avoiding financial difficulties and maintaining their relationship. These themes are discussed in the context of the self-regulation model, which allows fertility treatment experiences to be conceptualised more broadly than do other models.N/

    Perceptions of rewards among volunteer caregivers of people living with AIDS working in faith-based organizations in South Africa: a qualitative study

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    <p>Abstract</p> <p>Background</p> <p>Volunteer caregivers are a critical source of support for the majority of people living with HIV and AIDS in southern Africa, which has extremely high HIV/AIDS prevalence rates. While studies have shown that volunteer caregiving is associated with negative health and socio-economic outcomes, little is known about the positive experiences of volunteers in the home-based care context in South Africa. The purpose of this study is to explore the perception of rewards among volunteers working in home-based care settings.</p> <p>Methods</p> <p>This study uses a qualitative design. Qualitative interviews were conducted with a purposively selected sample of 55 volunteer caregivers using an interview schedule containing open-ended questions.</p> <p>Results</p> <p>Volunteer caregivers derived intrinsic rewards related to self-growth and personal (emotional and psychological) development on the job; they also derived satisfaction from community members taking a liking for them and expressing a need for their services. Volunteers felt gratified by the improvements in their health behaviours, which were a direct consequence of the experiences of caring for terminally ill patients with AIDS. Extrinsic rewards came from appreciation and recognition shown by patients and community members. Extrinsic rewards also accrued to volunteers when the services they rendered made their patients happy. Perhaps the greatest sources of extrinsic rewards are skills and competencies acquired from training and experience while caring for their patients, and volunteers' ability to make a difference in the community.</p> <p>Conclusions</p> <p>Insights into volunteer caregiver rewards provide opportunities for policy makers and programme managers to develop a model of home-based care that facilitates the accrual of rewards to volunteers alongside volunteers' traditional duties of patient care. Programme managers could employ these insights in recruiting and assisting volunteers to identify and reflect on rewards in the caregiving situation as a means of reducing the burden of care and sustaining volunteer interest in caregiving.</p

    Emotions and Digital Well-being. The rationalistic bias of social media design in online deliberations

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    In this chapter we argue that emotions are mediated in an incomplete way in online social media because of the heavy reliance on textual messages which fosters a rationalistic bias and an inclination towards less nuanced emotional expressions. This incompleteness can happen either by obscuring emotions, showing less than the original intensity, misinterpreting emotions, or eliciting emotions without feedback and context. Online interactions and deliberations tend to contribute rather than overcome stalemates and informational bubbles, partially due to prevalence of anti-social emotions. It is tempting to see emotions as being the cause of the problem of online verbal aggression and bullying. However, we argue that social media are actually designed in a predominantly rationalistic way, because of the reliance on text-based communication, thereby filtering out social emotions and leaving space for easily expressed antisocial emotions. Based on research on emotions that sees these as key ingredients to moral interaction and deliberation, as well as on research on text-based versus non-verbal communication, we propose a richer understanding of emotions, requiring different designs of online deliberation platforms. We propose that such designs should move from text-centred designs and should find ways to incorporate the complete expression of the full range of human emotions so that these can play a constructive role in online deliberations

    A Multicomponent eHealth Intervention for Family Carers for People Affected by Psychosis: A Coproduced Design and Build Study

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    Background: Psychosis, including schizophrenia, is the most common severe mental illness affecting 1% of the population worldwide. A large number of people provide long-term support and care for a relative with psychosis. Although psychoeducational interventions, especially those delivered through a face-to-face group format, have an established evidence base for improving the caregiving experience, well-being, and health outcomes, large-scale implementation and access remain limited. There is a demand for such provision to be made through the internet for greater flexibility and wider access. Objective: This study aimed to integrate participatory research methodologies by the public, patients, and carers into the eHealth (electronic health) intervention design and build process to improve the product’s usability and acceptability. Methods: We adapted a structured eHealth intervention build method to include participatory research activities involving key stakeholders and end users to co-design and coproduce our intervention. An expert advisory group (EAG) comprising public involvement members led the formative design and build work using an agile build process. Carers independent from the study were consulted on the evolving drafts of the intervention prototype through focus group meetings. These results were fed back into the intervention build work continuously to ensure end users’ input inform every stage of the process. Results: An EAG comprising individuals with lived experience of psychosis, carers, health care professionals, researchers, voluntary organization workers, and eLearning experts (n=14) was established. A total of 4 coproduction workshops were held over 1 year during which the alpha and beta prototypes were designed and built through the participatory research work. Alongside this, 2 rounds of focus group study with carers (n=24, in 4 groups) were conducted to seek consultation on end users’ views and ideas to optimize the intervention design and usability. Finally, the EAG carried out a Web-based walk-through exercise on the intervention prototype and further refined it to make it ready for an online usability test. The final product contains multiple sections providing information on psychosis and related caregiving topics and interactive discussion forums with experts and peers for psychosocial support. It provides psychoeducation and psychosocial support for carers through the internet, promoting flexible access and individualized choices of information and support. Conclusions: The participatory research work led to the coproduction of a eHealth intervention called COPe-support (Carers fOr People with Psychosis e-support). We believe the study methodology, results, and output have optimized the intervention design and usability, fitting the end users’ needs and usage pattern. COPe-support is currently being tested for its effectiveness in promoting carers’ health outcome through an online randomized controlled trial. Trial Registration: ISRCTN Registry ISRCTN89563420; http://www.isrctn.com/ISRCTN8956342

    Cancer patients’ family members’ experiences of the information and support provided by healthcare professionals

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    Objective: This qualitative study aimed to understand the experiences, information and support needs of family members of cancer patients, and their satisfaction with the services provided to them as a family member. Design: An inductive qualitative and critical realist approach to data collection and analysis was taken. Methods: Purposive sampling was used to identify family members of cancer patients. We conducted semi-structured interviews with 10 participants over email, enabling us to explore sensitive topics at a pace appropriate for each participant and gain rich sources of information. We analysed the data using an inductive thematic analysis. Results: Three superordinate themes were identified: information acquisition; seeking support; and family members’ experiences of cancer. Needs were high, and a complex relationship between information and support was apparent. Many participants felt dissatisfied with the support and information received as it was sometimes inconsistent, incorrect or vague; and some reported deterioration in their own health as a consequence. Online communities were reported as being very informative and supportive as the participants felt they could relate to the first-hand experience of the other members. Conclusion: Improving healthcare professionals’ awareness of the type of information and support the family members need is vital for both family members and patients. There is a need for the development of educational and psychological interventions to assist family members in coping when a loved one is diagnosed with cancer, is undergoing or recovering from treatment or is receiving palliative care
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