Development of an online information and support resource for adolescent idiopathic scoliosis patients considering surgery: perspectives of health care providers

<p>Abstract</p> <p>Background</p> <p>Adolescents with idiopathic scoliosis who are considering spinal surgery face a major decision that requires access to in-depth information and support. Unfortunately, most online resources provide incomplete and inconsistent information and minimal social support. The aim of this study was to develop an online information and support resource for adolescent idiopathic scoliosis (AIS) patients considering spinal surgery. Prior to website development, a user-based needs assessment was conducted. The needs assessment involved a total of six focus groups with three stakeholder groups: (1) post-operative AIS patients or surgical candidates (10-18 years) (n = 11), (2) their parents (n = 6) and (3) health care providers (n = 11). This paper reports on the findings from focus groups with health care providers.</p> <p>Methods</p> <p>Focus group methodology was used to invite a range of perspectives and stimulate discussion. During audio-recorded focus groups, an emergent table of website content was presented to participants for assessment of relevance, viability and comprehensiveness in targeting global domains of need. Specifically, effective presentation of content, desired aspects of information and support, and discussions about the value of peer support and the role of health professionals were addressed. Focus group transcripts were then subject to content analysis through a constant comparative review and analysis.</p> <p>Results</p> <p>Two focus groups were held with health care providers, consisting of 5 and 6 members respectively. Clinicians provided their perceptions of the information and support needs of surgical patients and their families and how this information and support should be delivered using internet technology. Health care providers proposed four key suggestions to consider in the development of this online resource: (1) create the website with the target audience in mind; (2) clearly state the purpose of the website and organize website content to support the user; (3) offer a professionally-moderated interactive support component; and (4) ensure accessibility of website information and support by considering the age, gender, reading level and geographic location of potential users.</p> <p>Conclusions</p> <p>Health care providers collectively identified the need for the development of an online information and support resource for adolescents considering surgery for AIS and their families and described the proposed website as a positive and needed adjunct to current clinical care.</p

Well-being over time in Britain and the USA

This paper studies happiness in the United States and Great Britain. Reported levels of well-being have declined over the last quarter of a century in the US; life satisfaction has run approximately flat through time in Britain. These findings are consistent with the Easterlin hypothesis [Nations and Households in Economic Growth: Essays in Honour of Moses Abramowitz (1974) Academic Press; J. Econ. Behav. Org., 27 (1995) 35]. The happiness of American blacks, however, has risen. White women in the US have been the biggest losers since the 1970s. Well-being equations have a stable structure. Money buys happiness. People care also about relative income. Well-being is U-shaped in age. The paper estimates the dollar values of events like unemployment and divorce. They are large. A lasting marriage (compared to widowhood as a ‘natural’ experiment), for example, is estimated to be worth $100,000 a year

Money, sex and happiness : an empirical study

The links between income, sexual behavior and reported happiness are studied using recent data on a sample of 16,000 adult Americans. The paper finds that sexual activity enters strongly positively in happiness equations. Higher income does not buy more sex or more sexual partners. Married people have more sex than those who are single, divorced, widowed or separated. The happiness‐maximizing number of sexual partners in the previous year is calculated to be 1. Highly educated females tend to have fewer sexual partners. Homosexuality has no statistically significant effect on happiness

Voices from the past: early institutional experience of children with disabilities - the case of Scotland

In Scotland, public interest in children with disabilities followed an uneven path. The proponents for such interest included workers in medicine, education and training, public administration, law and order, religion and moral rectitude, philanthropy and charity. Their foci of attention were similarly divers. Initial attention towards children with ‘disabilities’ was directed towards those with sensory impairments. This was followed by provision for children with mental disabilities. Until the introduction of compulsory education in 1872, philanthropists and charities were largely unaware of children with physical impairments. The Scottish experience was distinctive from the rest of the United Kingdom because of its own legal system, and was set against a background of heavy industrialization accompanied by poverty and bad housing. Legislation in such areas as poor law reform and education was not introduced simultaneously to that for England and Wales. The Church of Scotland maintained a strong influence in local government, through the network of clearly defined parishes, despite the secularization that was intent in such legislation as the Poor Law (Scotland) Act of 1843. The influence of Presbyterian clergymen and church elders committed to strongly held ideals of religious belief, respectability and self-help is often apparent in the institutions established for children with disabilities. The following research makes use of archival sources on institutions receiving, accommodating and caring for children with disabilities, supplemented by some contemporary narrative and oral testimony. While the archival sources show that the attention paid to children with disabilities did not develop simultaneously for categories of impairment broadly grouped as sensory, mental and physical, they also indicate that the responses to different forms of disablement followed diverse approaches and objectives

Towards an understanding of the information and support needs of surgical adolescent idiopathic scoliosis patients: a qualitative analysis

<p>Abstract</p> <p>Background</p> <p>Informed decision making for adolescents and families considering surgery for scoliosis requires essential information, including expected outcomes with or without treatment and the associated risks and benefits of treatment. Ideally families should also receive support in response to their individual concerns. The aim of this study was to identify health-specific needs for online information and support for patients with adolescent idiopathic scoliosis who have had or anticipate having spinal surgery.</p> <p>Methods</p> <p>Focus group methodology was chosen as the primary method of data collection to encourage shared understandings, as well as permit expression of specific, individual views. Participants were considered eligible to participate if they had either experienced or were anticipating surgery for adolescent idiopathic scoliosis within 12 months, were between the ages of 10 and 18 years of age, and were English-speaking.</p> <p>Results</p> <p>Two focus groups consisting of 8 adolescents (1 male, 7 female) and subsequent individual interviews with 3 adolescents (1 male, 2 female) yielded a range of participant concerns, in order of prominence: (1) recovery at home; (2) recovery in hospital; (3) post-surgical appearance; (4) emotional impact of surgery and coping; (5) intrusion of surgery and recovery of daily activities; (6) impact of surgery on school, peer relationships and other social interactions; (7) decision-making about surgery; (8) being in the operating room and; (9) future worries.</p> <p>Conclusion</p> <p>In conclusion, adolescents welcomed the possibility of an accessible, youth-focused website with comprehensive and accurate information that would include the opportunity for health professional-moderated, online peer support.</p

(In)formalization and the civilizing process : applying the work of Norbert Elias to housing-based anti-social behaviour interventions in the UK

This paper uses Norbert Elias's theory of the civilizing process to examine trends in social conduct in the UK and to identify how problematic “anti‐social” behaviour is conceptualized and governed through housing‐based mechanisms of intervention. The paper describes how Elias's concepts of the formalization and informalization of conduct and the construction of established and outsider groups provide an analytical framework for understanding social relations. It continues by discussing how de‐civilizing processes are also evident in contemporary society, and are applied to current policy discourse around Respect and anti‐social behaviour. The paper uses the governance of “anti‐social” conduct through housing mechanisms in the UK to critique the work of Elias and concludes by arguing that a revised concept of the civilizing process provides a useful analytical framework for future studies

Lived religion: Rethinking human nature in a neoliberal age

This article considers the relationship between philosophy of religion and an approach to the study of religion, which prioritises the experience of lived religion. Considering how individuals and communities live out their faith challenges some of the assumptions of analytic philosophers of religion regarding the position the philosopher should adopt when approaching the investigation of religion. If philosophy is understood principally as a means for analysing belief, it will have little space for an engagement with what it feels like to live out one’s faith

EMDR Effects on Pursuit Eye Movements

This study aimed to objectivize the quality of smooth pursuit eye movements in a standard laboratory task before and after an Eye Movement Desensitization and Reprocessing (EMDR) session run on seven healthy volunteers. EMDR was applied on autobiographic worries causing moderate distress. The EMDR session was complete in 5 out of the 7 cases; distress measured by SUDS (Subjective Units of Discomfort Scale) decreased to a near zero value. Smooth pursuit eye movements were recorded by an Eyelink II video system before and after EMDR. For the five complete sessions, pursuit eye movement improved after their EMDR session. Notably, the number of saccade intrusions—catch-up saccades (CUS)—decreased and, reciprocally, there was an increase in the smooth components of the pursuit. Such an increase in the smoothness of the pursuit presumably reflects an improvement in the use of visual attention needed to follow the target accurately. Perhaps EMDR reduces distress thereby activating a cholinergic effect known to improve ocular pursuit

Temperature and Resource Availability May Interactively Affect Over-Wintering Success of Juvenile Fish in a Changing Climate

The predicted global warming may affect freshwater systems at several organizational levels, from organism to ecosystem. Specifically, in temperate regions, the projected increase of winter temperatures may have important effects on the over-winter biology of a range of organisms and especially for fish and other ectothermic animals. However, temperature effects on organisms may be directed strongly by resource availability. Here, we investigated whether over-winter loss of biomass and lipid content of juvenile roach (Rutilus rutilus) was affected by the physiologically relatively small (2-5°C) changes of winter temperatures predicted by the Intergovernmental Panel on Climate Change (IPCC), under both natural and experimental conditions. This was investigated in combination with the effects of food availability. Finally, we explored the potential for a correlation between lake temperature and resource levels for planktivorous fish, i.e., zooplankton biomass, during five consecutive winters in a south Swedish lake. We show that small increases in temperature (+2°C) affected fish biomass loss in both presence and absence of food, but negatively and positively respectively. Temperature alone explained only a minor part of the variation when food availability was not taken into account. In contrast to other studies, lipid analyses of experimental fish suggest that critical somatic condition rather than critical lipid content determined starvation induced mortality. Our results illustrate the importance of considering not only changes in temperature when predicting organism response to climate change but also food-web interactions, such as resource availability and predation. However, as exemplified by our finding that zooplankton over-winter biomass in the lake was not related to over-winter temperature, this may not be a straightforward task