Chronic illness in non-heterosexual contexts: an online survey of experiences

In this article we contribute to the expansion of lesbian, gay, bisexual, transgender and queer (LGBTQ) health psychology beyond the confines of sexual health by examining the experiences of lesbian, gay and bisexual people living with non-HIV related chronic illness. Using a (predominantly) qualitative online survey, the perspectives of 190 LGB people with 52 different chronic illnesses from eight countries were collected. The five most commonly reported physical conditions were arthritis, hypertension, diabetes, asthma and chronic fatigue syndrome. Our analysis focuses on four themes within participants’ written comments: (1) ableism within LGBT communities; (2) isolation from LGBT communities and other LGB people living with chronic illness; (3)heteronormativity within sources of information and support and; (4) homophobia from healthcare professionals. We conclude by suggesting that LGBTQ psychology could usefully draw on critical health psychology principles and frameworks to explore non-heterosexual’s lived experiences of chronic illness, and also that there remains a need for specifically targeted support groups and services for LGB people with chronic illnesses.

Pregnancy loss in lesbian and bisexual women: An online survey of experiences

Background: Although pregnancy loss is a distressing health event for many women, research typically equates women’s experiences of pregnancy loss to ‘married heterosexual women’s experiences of pregnancy loss’. The objective of this study was to explore lesbian and bisexual women’s experiences of miscarriage, stillbirth and neonatal death. Methods: This study analysed predominantly qualitative online survey data from 60 non-heterosexual, mostly lesbian, women from the UK, USA, Canada and Australia. All but one of the pregnancies was planned. Most respondents had physically experienced one early miscarriage during their first pregnancy, although a third had experienced multiple losses. Results: The analysis highlights three themes: processes and practices for conception; amplification of loss; and health care and heterosexism. Of the respondents, 84% conceived using donor sperm; most used various resources to plan conception and engaged in preconception health care. The experience of loss was amplified due to contextual factors and the investment respondents reported making in impending motherhood. Most felt that their loss(es) had made a ‘significant’/‘very significant’ impact on their lives. Many respondents experienced health care during their loss. Although the majority rated the overall standard of care as ‘good’/‘very good’/‘outstanding’, a minority reported experiencing heterosexism from health professionals. Conclusions: The implications for policy and practice are outlined. The main limitation was that the inflexibility of the methodology did not allow the specificities of women’s experiences to be probed further. It is suggested that both coupled and single non-heterosexual women should be made more visible in reproductive health and pregnancy loss research.

Online information seeking by patients with bipolar disorder:results from an international multisite survey

Background: Information seeking is an important coping mechanism for dealing with chronic illness. Despite a growing number of mental health websites, there is little understanding of how patients with bipolar disorder use the Internet to seek information. Methods: A 39 question, paper-based, anonymous survey, translated into 12 languages, was completed by 1222 patients in 17 countries as a convenience sample between March 2014 and January 2016. All patients had a diagnosis of bipolar disorder from a psychiatrist. Data were analyzed using descriptive statistics and generalized estimating equations to account for correlated data. Results: 976 (81 % of 1212 valid responses) of the patients used the Internet, and of these 750 (77 %) looked for information on bipolar disorder. When looking online for information, 89 % used a computer rather than a smartphone, and 79 % started with a general search engine. The primary reasons for searching were drug side effects (51 %), to learn anonymously (43 %), and for help coping (39 %). About 1/3 rated their search skills as expert, and 2/3 as basic or intermediate. 59 % preferred a website on mental illness and 33 % preferred Wikipedia. Only 20 % read or participated in online support groups. Most patients (62 %) searched a couple times a year. Online information seeking helped about 2/3 to cope (41 % of the entire sample). About 2/3 did not discuss Internet findings with their doctor. Conclusion: Online information seeking helps many patients to cope although alternative information sources remain important. Most patients do not discuss Internet findings with their doctor, and concern remains about the quality of online information especially related to prescription drugs. Patients may not rate search skills accurately, and may not understand limitations of online privacy. More patient education about online information searching is needed and physicians should recommend a few high quality websites.

Discriminating behaviors through value added premium online grocery offering

Despite many interest in e-grocery, little has changed, over the years, in the offering that is often geared only towards low value staple products. Yet, from an e-supermarket perspective, the number of sourcing stores is increasing regularly providing an illusion of service improvement. This situation, we argue is leading e-grocery providers to forego profits as consumers need to look both at the competition online and offline to satisfy their overall regular grocery needs. Expansion of e-grocery operations could be better achieved, we argue, by serving diverse and premium priced products (e.g. organic, limited production, regional items; special occasions items and products related to health e.g. allergies, diabetes) and utilizing more efficiently modern logistic techniques. A framework is offered presenting a model including the delivery of premium products from various suppliers and providing an integrated service solution to e-grocery customers that complete traditional supermarket ranges, creating potential high value added products niches. In this context, the objective was to understand the consumer discrimination factors (ie: range of product, delivery timing, location, service quality) leading to intentions towards purchasing more items from e-grocery retailers. Data are derived from a survey of 356 respondents in Turkey’s three biggest metropolitan areas. The relationship between consumer attitudes and demographic characteristics are also analyzed. Factor and SEM analyses are used to discriminate within the sample (n=356, no of items=150). Results, future research and policy implications are discussed.

The role of the undergraduate work placement in developing employment competences:results from a 5 year survey of employers

School examine the role of the work placement in developing ‘soft’ competences among management undergraduates. They draw upon a five-year survey in which students and their employers are asked about the personal development and performance of the students during their placement year. The authors’ findings provide confirmation of the value of the placement year, particularly as an opportunity for building self confidence, and for developing the inter-personal competences necessary to integrate effectively in a collaborative environment. In contrast, competences necessary for the effective performance of individual roles, and in particular competences relating to leading, persuading and influencing others, are less highly rated. Whilst not wholly conclusive, these findings provide some important pointers to the need for further research into the complementary roles played by university-based and work-based learning in developing the competences needed to enhance graduate employability.

Singapore's online retail deviants:analyzing the rise of blogshops' power

Geography, retailing, and power are institutionally bound up together. Within these, the authors situate their research in Clegg's work on power. Online shopping offers a growing challenge to the apparent hegemony of traditional physical retail stores' format. While novel e-formats appear regularly, blogshops in Singapore are enjoying astonishing success that has taken the large retailers by surprise. Even though there are well-developed theoretical frameworks for understanding the role of institutional entrepreneurs and other major stakeholders in bringing about change and innovation, much less attention has been paid to the role of unorganized, nonstrategic actors-such as blogshops-in catalyzing retail change. The authors explore how blogshops are perceived by consumers and how they challenge the power of other shopping formats. They use Principal Components Analysis to analyze results from a survey of 349 blogshops users. While the results show that blogshops stay true to traditional online shopping attributes, deviations occur on the concept of value. Furthermore, consumer power is counter intuitively found to be strongly present in the areas related to cultural ties, excitement, and search for individualist novelty (as opposed to mass-production), thereby encouraging researchers to think critically about emerging power behavior in media practices.

Personal knowledge development in online learning:a model for measuring externalisation, combination and internalisation

This paper presents a model for measuring personal knowledge development in online learning environments. It is based on Nonaka‘s SECI model of organisational knowledge creation. It is argued that Socialisation is not a relevant mode in the context of online learning and was therefore not covered in the measurement instrument. Therefore, the remaining three of SECI‘s knowledge conversion modes, namely Externalisation, Combination, and Internalisation were used and a measurement instrument was created which also examines the interrelationships between the three modes. Data was collected using an online survey, in which online learners report on their experiences of personal knowledge development in online learning environments. In other words, the instrument measures the magnitude of online learners‘ Externalisation and combination activities as well as their level of internalisation, which is the outcome of their personal knowledge development in online learning.

Intellectual property enforcement in smaller UK firms:findings from a survey in 2009-10

This report details research into the enforcement of intellectual property (IP). It considers the attitudes and practices of small and medium-sized enterprises (SMEs) and micro firms as well as the cost implications of the present IP enforcement system in the UK. According to an earlier report for SABIP, by Weatherall et al. 2009, in the Gowers Review of Intellectual Property questions of enforcement were largely addressed through assertion, rather than empirical research. This report aims to provide such research. Our study included both an online survey and a phone survey. These concentrated on SMEs and micro firms rather than being a comparative study with large firms. Further work obtained information on Patents and Registered Design cases listed for hearings in the Patents Court from 2003 to 2009. The analysis of this data provides some evidence that complements the results of the survey.

Online-questionaire design guidelines

As a new medium for questionnaire delivery, the internet has the potential to revolutionize the survey process. Online (web-based) questionnaires provide several advantages over traditional survey methods in terms of cost, speed, appearance, flexibility, functionality, and usability. Designers of online-questionnaires are faced with a plethora of design tools to assist in the development of their electronic questionnaires. Little, if any, support is incorporated, however, within these tools to guide online-questionnaire designers according to best practice. In essence, an online-questionnaire combines questionnaire-based survey functionality with that of a webpage/site. As such, the design of an online-questionnaire should incorporate principles from both contributing fields. Drawing on existing guidelines for paper-based questionnaire design, website design (paying particular attention to issues of accessibility and usability), and existing but scarce guidelines for electronic surveys, we have derived a comprehensive set of guidelines for the design of online-questionnaires. This article introduces this comprehensive set of guidelines – as a practical reference guide – for the design of online-questionnaires.

Online-questionnaire design:establishing guidelines and evaluating existing eupport

As a new medium for questionnaire delivery, the internet has the potential to revolutionise the survey process. Online (web-based) questionnaires provide several advantages over traditional survey methods in terms of cost, speed, appearance, flexibility, functionality, and usability [1, 2]. For instance, delivery is faster, responses are received more quickly, and data collection can be automated or accelerated [1- 3]. Online-questionnaires can also provide many capabilities not found in traditional paper-based questionnaires: they can include pop-up instructions and error messages; they can incorporate links; and it is possible to encode difficult skip patterns making such patterns virtually invisible to respondents. Like many new technologies, however, online-questionnaires face criticism despite their advantages. Typically, such criticisms focus on the vulnerability of online-questionnaires to the four standard survey error types: namely, coverage, non-response, sampling, and measurement errors. Although, like all survey errors, coverage error (“the result of not allowing all members of the survey population to have an equal or nonzero chance of being sampled for participation in a survey” [2, pg. 9]) also affects traditional survey methods, it is currently exacerbated in online-questionnaires as a result of the digital divide. That said, many developed countries have reported substantial increases in computer and internet access and/or are targeting this as part of their immediate infrastructural development [4, 5]. Indicating that familiarity with information technologies is increasing, these trends suggest that coverage error will rapidly diminish to an acceptable level (for the developed world at least) in the near future, and in so doing, positively reinforce the advantages of online-questionnaire delivery. The second error type – the non-response error – occurs when individuals fail to respond to the invitation to participate in a survey or abandon a questionnaire before it is completed. Given today’s societal trend towards self-administration [2] the former is inevitable, irrespective of delivery mechanism. Conversely, non-response as a consequence of questionnaire abandonment can be relatively easily addressed. Unlike traditional questionnaires, the delivery mechanism for online-questionnaires makes estimation of questionnaire length and time required for completion difficult1, thus increasing the likelihood of abandonment. By incorporating a range of features into the design of an online questionnaire, it is possible to facilitate such estimation – and indeed, to provide respondents with context sensitive assistance during the response process – and thereby reduce abandonment while eliciting feelings of accomplishment [6]. For online-questionnaires, sampling error (“the result of attempting to survey only some, and not all, of the units in the survey population” [2, pg. 9]) can arise when all but a small portion of the anticipated respondent set is alienated (and so fails to respond) as a result of, for example, disregard for varying connection speeds, bandwidth limitations, browser configurations, monitors, hardware, and user requirements during the questionnaire design process. Similarly, measurement errors (“the result of poor question wording or questions being presented in such a way that inaccurate or uninterpretable answers are obtained” [2, pg. 11]) will lead to respondents becoming confused and frustrated. Sampling, measurement, and non-response errors are likely to occur when an online-questionnaire is poorly designed. Individuals will answer questions incorrectly, abandon questionnaires, and may ultimately refuse to participate in future surveys; thus, the benefit of online questionnaire delivery will not be fully realized. To prevent errors of this kind2, and their consequences, it is extremely important that practical, comprehensive guidelines exist for the design of online questionnaires. Many design guidelines exist for paper-based questionnaire design (e.g. [7-14]); the same is not true for the design of online questionnaires [2, 15, 16]. The research presented in this paper is a first attempt to address this discrepancy. Section 2 describes the derivation of a comprehensive set of guidelines for the design of online-questionnaires and briefly (given space restrictions) outlines the essence of the guidelines themselves. Although online-questionnaires reduce traditional delivery costs (e.g. paper, mail out, and data entry), set up costs can be high given the need to either adopt and acquire training in questionnaire development software or secure the services of a web developer. Neither approach, however, guarantees a good questionnaire (often because the person designing the questionnaire lacks relevant knowledge in questionnaire design). Drawing on existing software evaluation techniques [17, 18], we assessed the extent to which current questionnaire development applications support our guidelines; Section 3 describes the framework used for the evaluation, and Section 4 discusses our findings. Finally, Section 5 concludes with a discussion of further work.

What difference doguidelines make? An observational study of online-questionnaire design guidelines put to practical use

As a new medium for questionnaire delivery, the Internet has the potential to revolutionize the survey process. Online-questionnaires can provide many capabilities not found in traditional paper-based questionnaires. Despite this, and the introduction of a plethora of tools to support online-questionnaire creation, current electronic survey design typically replicates the look-and-feel of paper-based questionnaires, thus failing to harness the full power of the electronic delivery medium. A recent environmental scan of online-questionnaire design tools found that little, if any, support is incorporated within these tools to guide questionnaire designers according to best-practice [Lumsden & Morgan 2005]. This paper briefly introduces a comprehensive set of guidelines for the design of online-questionnaires. Drawn from relevant disparate sources, all the guidelines incorporated within the set are proven in their own right; as an initial assessment of the value of the set of guidelines as a practical reference guide, we undertook an informal study to observe the effect of introducing the guidelines into the design process for a complex online-questionnaire. The paper discusses the qualitative findings — which are encouraging for the role of the guidelines in the ‘bigger picture’ of online survey delivery across many domains such as e-government, e-business, and e-health — of this case study.

Guidelines for the design of online-questionnaires

As a new medium for questionnaire delivery, the internet has the potential to revolutionise the survey process. Online (web-based) questionnaires provide several advantages over traditional survey methods in terms of cost, speed, appearance, flexibility, functionality, and usability (Bandilla et al., 2003; Dillman, 2000; Kwak and Radler, 2002). Online-questionnaires can also provide many capabilities not found in traditional paper-based questionnaires: they can include pop-up instructions and error messages; they can incorporate links; and it is possible to encode difficult skip patterns making such patterns virtually invisible to respondents. Despite this, and the introduction of numerous tools to support online-questionnaire creation, current electronic survey design typically replicates that of paper-based questionnaires, failing to harness the full power of the electronic delivery medium. Worse, a recent environmental scan of online-questionnaire design tools found that little, if any, support is incorporated within these tools to guide questionnaire designers according to best-practice (Lumsden and Morgan, 2005). This article introduces a comprehensive set of guidelines - a practical reference guide - for the design of online-questionnaires.

Trading-up on unmet expectations? Evaluating consumers’ expectations in online premium grocery shopping logistics

Geography and retail store locations are inherently bound together; this study links food retail changes to systemic logistics changes in an emerging market. The later include raising income and education, access to a wide range of technologies, traffic and transport difficulties, lagging retail provision, changing family structure and roles, as well as changing food culture and taste. The study incorporates demand for premium products defined by Kapferer and Bastien [2009b. The Luxury Strategy. London: Kogan Page] as comprising a broad variety of higher quality and unique or distinctive products and brands including in grocery organic ranges, healthy options, allergy free selections, and international and gourmet/specialty products through an online grocery model (n = 356) that integrates a novel view of home delivery in Istanbul. More importantly from a logistic perspective our model incorporates any products from any online vendors broadening the range beyond listed items found in any traditional online supermarkets. Data collected via phone survey and analysed via structural equation modelling suggest that the offer of online premium products significantly affects consumers’ delivery logistics expectations. We discuss logistics operations and business management implications, identifying the emerging geography of logistic models which respond to consumers’ unmet expectations using multiple sourcing and consolidation points.

Internet use by patients with bipolar disorder:results from an international multisite survey

There is considerable international interest in online education of patients with bipolar disorder, yet little understanding of how patients use the Internet and other sources to seek information. 1171 patients with bipolar disorder diagnosis in 17 countries completed a paper-based, anonymous survey. 81% of the patients used the Internet, a percentage similar to the general public. Older age, less education, and challenges in country telecommunications infrastructure and demographics decreased the odds of using the Internet. About 78% of the Internet users looked online for information on bipolar disorder or 63% of the total sample. More years of education in relation to the country mean, and feeling very confident about managing life decreased the odds of seeking information on bipolar disorder online, while having attended support groups increased the odds. Patients who looked online for information on bipolar disorder consulted medical professionals plus a mean of 2.3 other information sources such as books, physician handouts, and others with bipolar disorder. Patients not using the Internet consulted medical professionals plus a mean of 1.6 other information sources. The percentage of patients with bipolar disorder who use the Internet is about the same as the general public. Other information sources remain important.

A telephone survey to determine the experiences of children and their parents/carers, following the initiation of a new medicine

Objective: To determine what issues are experienced during the first few weeks of therapy by patients, and their parents/carers, when a child/young person has been prescribed a new medicine. Method: One hundred patients aged ≤18 years of age prescribed a new medicine for ≥6 weeks were recruited from a single UK National Health Service specialist paediatric hospital outpatient pharmacy. Six weeks after the first dispensing of their new medicine the patient or their parent/carer received telephone follow-up by a researcher and verbally completed a questionnaire containing both open and closed questions. Patient or parent/carer experiences were identified and analysed using thematic analysis and descriptive statistics. Results: Eighty-six participants were available for telephone follow-up. Six (7%) had not started their medicine. Paediatric patients and their parents/carers experienced a range of issues during the first few weeks after starting a new medicine. These included additional concerns/questions (24/80, 30%), administration issues (21/80, 26.3%), adverse effects (29/80, 36.3%) and obtaining repeat supplies (12/80, 15%). The Morisky Medication Adherence Scale indicated that 34/78 (43.6%) participants had a high adherence rating, 35/78 (44.9%) medium and 9/78 (11.5%) a low rating. Conclusions: Paediatric patients and their parents/carers experience a range of issues during the first few weeks after starting a new medicine. Further research is required to determine the type of interventions that may further support medicines use in this group of patients.