Parental experience of childhood cancer using Interpretative Phenomenological Analysis

Whilst survival rates for childhood cancer have improved dramatically over the past three decades, it is still a devastating diagnosis for family members and an illness which severely disrupts the lifestyle of the family unit. Developing an understanding of the impact of the illness on the family is crucial to better support families’ deal with the demands of the illness. In this study 9 families in which a child was diagnosed with cancer were interviewed twice over a 12 month period, approximately 6 months apart. Using Interpretative Phenomenological Analysis (IPA), a semi-structured interview was used to explicate parent’s experience of childhood cancer. The results revealed 5 super ordinate themes; (1) a pivotal moment in time, (2) the experience of adaptation in relation to having a sick child, (3) the nature of support, (4) re-evaluation of values during a critical life experience and (5) the experience of optimism and altruism. Findings indicate that parents express both negative and positive experiences as they re-evaluate the meaning and purpose of life, seek to redefine themselves, often in terms of priorities, relationships, sense of community, and achieve degrees of optimism and altruism. Implications for addressing the needs of parents and for further research are discussed.

Caregiving experience and its influencing factors : rural versus urban adult-child caregivers caring for parents with dementia in China

Background: It is predicted that China will have the largest number of cases of dementia in the world by 2025 (Ferri et al., 2005). Research has demonstrated that caring for family members with dementia can be a long-term, burdensome activity resulting in physical and emotional distress and impairment (Pinquart & Sorensen, 2003b). The establishment of family caregiver supportive services in China can be considered urgent; and the knowledge of the caregiving experience and related influencing factors is necessary to inform such services. Nevertheless, in the context of rapid demographic and socioeconomic change, the impact of caregiving for rural and urban Chinese adult-child caregivers may be different, and different needs in supportive services may therefore be expected. Objectives: The aims of this research were 1) to examine the potential differences existing in the caregiving experience between rural and urban adult-child caregivers caring for parents with dementia in China; and 2) to examine the potential differences existing in the influencing factors of the caregiving experience for rural as compared with urban adult-child caregivers caring for parents with dementia in China. Based on the literature review and Kramer.s (1997) caregiver adaptation model, six concepts and their relationships of caregiving experience were studied: severity of the care receivers. dementia, caregivers. appraisal of role strain and role gain, negative and positive well-being outcomes, and health related quality of life. Furthermore, four influencing factors (i.e., filial piety, social support, resilience, and personal mastery) were studied respectively. Methods: A cross-sectional, comparative design was used to achieve the aims of the study. A questionnaire, which was designed based on the literature review and on Kramer.s (1997) caregiver adaptation model, was completed by 401 adult-child caregivers caring for their parents with dementia from the mental health outpatient departments in five hospitals in the Yunnan province, P.R. China. Structural equation modelling (SEM) was employed as the main statistical technique for data analyses. Other statistical techniques (e.g., t-tests and Chi-Square tests) were also conducted to compare the demographic characteristics and the measured variables between rural and urban groups. Results: For the first research aim, the results indicated that urban adult-child caregivers in China experienced significantly greater strain and negative well-being outcomes than their rural peers; whereas, the difference on the appraisal of role gain and positive outcomes was nonsignificant between the two groups. The results also indicated that the amounts of severity of care receivers. dementia and caregivers. health related quality of life do not have the same meanings between the two groups. Thus, the levels of these two concepts were not comparable between the rural and urban groups in this study. Moreover, the results also demonstrated that the negative direct effect of gain on negative outcomes in urban caregivers was stronger than that in rural caregivers, suggesting that the urban caregivers tended to use appraisal of role gain to protect themselves from negative well-being outcomes to a greater extent. In addition, the unexplained variance in strain in the urban group was significantly more than that in the rural group, suggesting that there were other unmeasured variables besides the severity of care receivers. dementia which would predict strain in urban caregivers compared with their rural peers. For the second research aim, the results demonstrated that rural adult-child caregivers reported a significantly higher level of filial piety and more social support than their urban counterparts, although the two groups did not significantly differ on the levels of their resilience and personal mastery. Furthermore, although the mediation effects of these four influencing factors on both positive and negative aspects remained constant across rural and urban adult-child caregivers, urban caregivers tended to be more effective in using personal mastery to protect themselves from role strain than rural caregivers, which in turn protects them more from the negative well-being outcomes than was the case with their rural peers. Conclusions: The study extends the application of Kramer.s caregiving adaptation process model (Kramer, 1997) to a sample of adult-child caregivers in China by demonstrating that both positive and negative aspects of caregiving may impact on the caregiver.s health related quality of life, suggesting that both aspects should be targeted in supportive interventions for Chinese family caregivers. Moreover, by demonstrating partial mediation effects, the study provides four influencing factors (i.e., filial piety, social support, resilience, and personal mastery) as specific targets for clinical interventions. Furthermore, the study found evidence that urban adult-child caregivers had more negative but similar positive experience compared to their rural peers, suggesting that the establishment of supportive services for urban caregivers may be more urgent at present stage in China. Additionally, since urban caregivers tended to use appraisal of role gain and personal mastery to protect themselves from negative well-being outcomes than rural caregivers to a greater extend, interventions targeting utility of gain or/and personal mastery to decrease negative outcomes might be more effective in urban caregivers than in rural caregivers. On the other hand, as cultural expectations and expression of filial piety tend to be more traditional in rural areas, interventions targeting filial piety could be more effective among rural caregivers. Last but not least, as rural adult-child caregivers have more existing natural social support than their urban counterparts, mobilising existing natural social support resources may be more beneficial for rural caregivers, whereas, formal supports (e.g., counselling services, support groups and adult day care centres) should be enhanced for urban caregivers.

The role of universities in building prosperous knowledge cities : the Malaysian experience

This paper explores the role and importance of universities, particularly in the Malaysian context, for building prosperous knowledge cities of the rising knowledge economy. It aims to shed light on how universities contribute to the knowledge-based development of Malaysian cities by undertaking a case study investigation. In the case of Bandar Seri Iskandar, the paper scrutinises the creation – from scratch – of a knowledge city, including the establishment of new public and private universities and hence providing a unique opportunity to understand how the idea of the knowledge economy has permeated economic development policy within a developing country context. The research findings reveal that in Malaysia, much like many of the developed countries, universities are being positioned to play a major role in supporting knowledge city (trans)formation. While there has been a tangible success on the spatial development based on a rapid land use change towards accommodating knowledge-intensive land use and activities, the research reports that a more concerted and coordinated effort from academia, public and private sectors are needed to further foster the growth and development of economical, environmental, institutional and social aspects of Bandar Seri Iskandar to become a fully functioning prosperous knowledge city.

Moving towards a knowledge city? Brisbane's experience in knowledge-based urban development

: In the global knowledge economy, knowledge-intensive industries and knowledge workers are extensively seen as the primary factors to improve the welfare and competitiveness of cities. To attract and retain such industries and workers, cities produce knowledge-based urban development strategies, where such strategising is also an important development mechanism for cities and their economies. This paper investigates knowledge-based urban development strategies of Brisbane, Australia that support generation, attraction, and retention of investment and talent. The paper puts forward a clear understanding on the policy frameworks, and relevant applications of Brisbane’s knowledge-based urban development experience in becoming a prosperous knowledge city, and concludes by providing invaluable insights and directions for other cities seeking knowledge-based urban development.

General characteristics of anticipated user experience (AUX) with interactive products

Providing a positive user experience (UX) has become the key differentiator for products to win a competition in mature markets. To ensure that a product will support enjoyable experiences for its users, assessment of UX should be conducted early during the design and development process. However, most UX frameworks and evaluation techniques focus on understanding and assessing user’s experience with functional prototypes or existing products. This situation delays UX assessment until the late phases of product development which may result in costly design modifications and less desirable products. A qualitative study was conducted to investigate anticipated user experience (AUX) to address this issue. Twenty pairs of participants were asked to imagine an interactive product, draw their product concept, and anticipate their interactions and experiences with it. The data was analyzed to identify general characteristics of AUX. We found that while positive AUX was mostly related to an imagined/desired product, negative AUX was mainly associated with existing products. It was evident that the pragmatic quality of product was fundamental, and significantly influenced user’s anticipated experiences. Furthermore, the hedonic quality of product received more focus in positive than negative AUX. The results also showed that context, user profile, experiential knowledge, and anticipated emotion could be reflected in AUX. The understanding of AUX will help product designers to better foresee the users’ underlying needs and to focus on the most important aspects of their positive experiences, which in turn facilitates the designers to ensure pleasurable UX from the start of the design process.

Identifying and delineating information experience as a research domain : A discussion paper

A line of information and information literacy research has emerged that has a strong focus on information experience. Strengthened understanding, profiling and theorising of information experience as a specific domain of interest to information researchers is required. A focus on information experience is likely to have a major influence on the field, drawing attention to interpretive and experiential forms of research.

Data modeling in elementary and middle school classes : a shared experience

This paper argues for a renewed focus on statistical reasoning in the elementary school years, with opportunities for children to engage in data modeling. Data modeling involves investigations of meaningful phenomena, deciding what is worthy of attention, and then progressing to organizing, structuring, visualizing, and representing data. Reported here are some findings from a two-part activity (Baxter Brown’s Picnic and Planning a Picnic) implemented at the end of the second year of a current three-year longitudinal study (grade levels 1-3). Planning a Picnic was also implemented in a grade 7 class to provide an opportunity for the different age groups to share their products. Addressed here are the grade 2 children’s predictions for missing data in Baxter Brown’s Picnic, the questions posed and representations created by both grade levels in Planning a Picnic, and the metarepresentational competence displayed in the grade levels’ sharing of their products for Planning a Picnic.

The subjective experience of negative symptoms : characteristics of emotional withdrawal

According to the diagnosis of schizophrenia in the DSM-IV-TR (American Psychiatric Association, 2000), negative symptoms are those personal characteristics that are thought to be reduced from normal functioning, while positive symptoms are aspects of functioning that exist as an excess or distortion of normal functioning. Negative symptoms are generally considered to be a core feature of people diagnosed with schizophrenia. However, negative symptoms are not always present in those diagnosed, and a diagnosis can be made with only negative or only positive symptoms, or with a combination of both. Negative symptoms include an observed loss of emotional expression (affective flattening), loss of motivation or self directedness (avolition), loss of speech (alogia), and also a loss of interests and pleasures (anhedonia). Positive symptoms include the perception of things that others do not perceive (hallucinations), and extraordinary explanations for ordinary events (delusions) (American Psychiatric Association, 2000). Both negative and positive symptoms are derived from watching the patient and thus do not consider the patient’s subjective experience. However, aspects of negative symptoms, such as observed affective flattening are highly contended. Within conventional psychiatry, the absence of emotional expression is assumed to coincide with an absence of emotional experience. Contrasting research findings suggests that patients who were observed to score low on displayed emotional expression, scored high on self ratings of emotional experience. Patients were also observed to be significantly lower on emotional expression when compared with others (Aghevli, Blanchard, & Horan, 2003; Selton, van der Bosch, & Sijben, 1998). It appears that there is little correlation between emotional experience and emotional expression in patients, and that observer ratings cannot help us to understand the subjective experience of the negative symptoms. This chapter will focus on research into the subjective experiences of negative symptoms. A framework for these experiences will be used from the qualitative research findings of the primary author (Le Lievre, 2010). In this study, the primary author found that subjective experiences of the negative symptoms belonged to one of the two phases of the illness experience; “transitioning into emotional shutdown” or “recovering from emotional shutdown”. This chapter will use the six themes from the phase of “transitioning into emotional shutdown”. This phase described the experience of turning the focus of attention away from the world and onto the self and the past, thus losing contact with the world and others (emotional shutdown). Transitioning into emotional shutdown involved; “not being acknowledged”, “relational confusion”, “not being expressive”, “reliving the past”, “detachment”, and “no sense of direction” (Le Lievre, 2010). Detail will be added to this framework of experience from other qualitative research in this area. We will now review the six themes that constitute a “transition into emotional shutdown” and corresponding previous research findings.

A majority experience: young people’s encounters with the labour market

Young people are frequently the focus of study in social science. Education, employment, leisure, criminality and family life are all spheres within which the different experiences of young people have been examined (Pollock 2008). A still relatively small, but expanding strand of this broader scholarship addressing youth-related issues is a body of theoretical and empirical literature which focuses on young people's participation in work. This growing interest in young people's employment has followed a significant shift in many western societies. Younger and much larger numbers of young people, still engaged in full time education, are entering the formal labour market. Indeed, in many countries, employment is a majority experience for children (Hobbs and McKechnie 1997), and for young people in general. While in such work there has been a tendency to blur definitional lines, here we adopt the term 'young people' which incorporates the definitions of 'children' as those under 18 years and 'youth' as those under 24 (UN n.d.).

Influencing the experience of people in urban public places through mobile mediated interactions

This paper introduces our research on influencing the experience of people in urban public places through mobile mediated interactions. Information and communication technology (ICT) devices are sometimes used to create personal space while in public. ICT devices could also be utilised to digitally augment the urban space with non-privacy sensitive data enabling mobile mediated interactions in an anonymous way between collocated strangers. We present what motivates the research on digital augmentations and mobile mediated interactions between unknown urban dwellers, define the research problem that drives this study and why it is significant research in the field of pervasive social networking. The paper illustrates three design interventions enabling social pervasive content sharing and employing pervasive presence, awareness and anonymous social user interaction in urban public places. The paper concludes with an outlook and summarises the research effort.

Desire in the winter’s pale : a hermeneutic interpretation of the experience of sexual desire in older age

The experience of sexual desire in older age remains an aspect of the ageing experience about which little is known; much less understood. To address this gap in knowledge, the purpose of this hermeneutic interpretive study was to describe and understand how sexual desire is experienced in a sample of 11 purposively selected men and six women aged between 62 and 92 years. The study was based on audio-taped interviews with participants who were willing to discuss their experiences of sexual desire. The study was guided by the philosophy of Paul Ricoeur through the process of interview transcription to the interpretation of the experience of sexual desire in older age. Participants’ narratives were analysed for emergent themes using a twofold methodology inspired by Ricoeur. The narratives provided first-hand accounts of the experience of sexual desire in an ageing context. Findings revealed that participants identified as a sexual being regardless of age and availability of sexual partner. Findings also revealed that sexual selfhood was acknowledged through physiological response, that sexual desire could be influenced by socio-cultural factors and experienced within an ethical relational domain. Major themes explicated during the study included the experience of health and wellbeing, experience of sexual response, experience of sexual inadequacy, being socialised and re-entering the social scene.

Trends in policies, programs and practices in the Australasian First Year Experience literature 2000-2010. The First Year in Higher Education Research Series on Evidence-based Practice. Number 1

This publication is the first in a series of scholarly reports on research-based practice related to the First Year Experience in Higher Education. This report synthesises evidence about practice-based initiatives and pragmatic approaches in Aotearoa (New Zealand) and Australia that aim to enhance the experience of commencing students in the higher education sector. Trends in policies, programs and practices ... examines the first year experience literature from 2000-2010. It acknowledges the uniqueness of the Australasian socio-political context and its influence on the interests and output of researchers. The review surveyed almost 400 empirical reports and conceptual discussions produced over the decade that dealt with the stakeholders, institutions and the higher education sector in Australasia. The literature is examined through two theoretical constructs or “lenses”: first, a set of first year curriculum design principles and second, the generational approach to describing the maturation of initiatives. These outcomes and suggested directions for further research provide the challenges and the opportunities for FYE adherents, both scholars and practitioners, to grapple with in the next decade.

Mobilizing the brand experience: The adoption and use of mobile media in building consumer relationships in China

This research examines why and how brand owners in China adopt and use mobile media in marketing campaigns to deliver co-creation brand experiences and build consumer relationships. China represents an interesting case to study as it has leapfrogged into the age of consumer society and mobile media adoption. As the largest mobile market globally, it has experienced the intensity of mobile technology diffusion; and with it the rise of mobile consumer culture and participatory culture. Further, the rising individualism and the socio-cultural heritage in collectivism serve as a structuring tension in how mobile media is leveraged in marketing to cater to consumers' desires for individuality and social interaction. First, through expert interviews guided by the technology-organization-environment (TOE) framework (Tornatzky & Fleischer, 1990) as well as integrating innovation diffusion theory (E. Rogers, 2003), this research attempts to fill the gap of theoretical application in mobile marketing adoption at the firm level in China, and unravel the adoption factors of mobile marketing by brand owners in China. In total, 27 semi-structured interviews were conducted with key industry informants from mobile agencies, traditional agencies, venture capital firms, mobile content and service providers, mobile portals, and marketing management at brand owners. Second, based on case studies in China, this research investigates the use of mobile marketing to facilitate innovative co-creation of brand experience to cater to both individualistic as well as collective tendencies and desires amongst Chinese consumers. Through multiple case studies of the campaigns conducted by Nokia, Clean & Clear, and The North Face, and informed by in-depth interviews and document analysis, this research analyses the role of mobile media in marketing campaigns along three dimensions: the role of mobile media in content generation and consumption, the centrality of mobile media as text, tools or platforms; and the interactive environment. Specifically, the cases are organized along the spectrum from user-generated content to corporate-generated content, mobile media's role from being supplementary to it being central, and from a virtual environment to a hybrid environment. Overall, these cases demonstrate how brand owners adapt mobile media as text, tools, platforms, and environments to deliver co-creation brand experiences exploiting both individualistic as well as collective tendencies and desires amongst Chinese consumers. This research contributes to the literature on firm adoption of mobile marketing, and the role of the mobile media in facilitating co-creation experiences for Chinese consumers. It develops a model of the technological, organizational and environmental factors influencing mobile marketing adoption by firms, and provides a model explaining the role of mobile media in facilitating brand experience co-creation. The findings also demonstrate that mobile media can be leveraged to facilitate co-creation brand experience to generate added value; and meanwhile cater to both the rising individualism and the deep-seated collectivism of Chinese consumers. Empirically, it assists industry practitioners in understanding the adoption of mobile marketing in China, especially those on the supply side in order to improve their offerings and propositions. It also assists brand owners and agencies in designing their mobile marketing strategies to build consumer relationships in China.