The meaning of cancer for Australian Aboriginal women : changing the focus of cancer nursing

Aim: The purpose of the study was to explore why Aboriginal women participate in cancer screening programs but appear reluctant to following-up results, or accept medical advice about treatment. Methods: Interpretive ethnography, a qualitative methodology, was used to explore Aboriginal women’s perception of cancer, and the cultural context in which meaning was constructed and influenced treatment decision. Data collection, which occurred over two years, involved fieldwork, participant-observation, face-to-face interviews and focus groups, in two rural Aboriginal communities. Forty eight interviews were recorded from a cross section of the communities, including cancer survivors and patients, family members, health care providers and other women from the community. Results: Key findings were that Aboriginal women’s had a fearful and fatalistic attitude toward cancer, doubted the efficacy of treatment and carried an enduring ambivalence toward the authority of whiteman’s medicine. The women faced a dilemma of wanting access to cancer treatment options but feared entering hospital or clinics not attuned to their cultural needs. Conclusion: The findings highlight the need for a culture-centred approach that decentres the authority of conventional services and instead gives prominence to Aboriginal cultural values as a focal point in cancer control. It should be the responsibility of cancer nurses and others to engage with their local Aboriginal communities to build relationships that foster an exchange of learning about cultural differences that make a difference to how cancer control is practiced.

Does research into sensitive areas do harm? Experiences of research participation after a child’s diagnosis with Ewing’s Sarcoma

Objective: To investigate family members’ experiences of involvement in a previous study (conducted August 1995 to June 1997) following their child’s diagnosis with Ewing’s sarcoma. Design: Retrospective survey, conducted between 1 November and 30 November 1997, using a postal questionnaire. Participants: Eighty-one of 97 families who had previously completed an in-depth interview as part of a national case–control study of Ewing’s sarcoma. Main outcome measures: Participants’ views on how participation in the previous study had affected them and what motivated them to participate. Results: Most study participants indicated that taking part in the previous study had been a positive experience. Most (n = 79 [97.5%]) believed their involvement would benefit others and were glad to have participated, despite expecting and finding some parts of the interview to be painful. Parents whose child was still alive at the time of the interview recalled participation as more painful than those whose child had died before the interview. Parents who had completed the interview less than a year before our study recalled it as being more painful than those who had completed it more than a year before. Conclusions: That people suffering bereavement are generally eager to participate in research and may indeed find it a positive experience is useful information for members of ethics review boards and other “gatekeepers”, who frequently need to determine whether studies into sensitive areas should be approved. Such information may also help members of the community to make an informed decision regarding participation in such research.

Hunger

Poet's statement: My father died of pancreatic cancer a few years ago, and since then other family members and friends have developed cancer. Some have recovered, perhaps temporarily, while for others the prospect is one of inevitable decline, raising questions about when the point is reached where death is preferable to life. This poem expresses the ambiguity of visceral urges which could be towards either continued life or a relieving death.

Nurturing Needs: Literacy Achievement for Refugee students

Yeronga State School, located 7 km from the city in Brisbane, Queensland, opened in 1871. YSS caters for a middle class inner-suburban community, however, from the mid 1990s enrolments brought new forms of socio-economic, cultural and linguistic diversity. Initially, ESL students were enrolled due to their immigrant parents enrolling in the neighbouring TAFE. Then refugee families from Bosnia and the Middle East became part of the YSS community. In recent years, refugee numbers have accounted for up to 23% of the school population. Many of these new arrivals left behind families in war-torn circumstances, were orphaned or came to live with unknown relatives. Some family members were victims of torture which may have been witnessed by the children. Trauma for some or all family members was a very real concern. Others were born in refugee camps, where food was scarce, belongings needed to be guarded and safety was never guaranteed.

Birthing practices of traditional birth attendants in south Asia in the context of training programmes

Traditional Birth Attendants (TBA) training has been an important component of public health policy interventions to improve maternal and child health in developing countries since the 1970s. More recently, since the 1990s, the TBA training strategy has been increasingly seen as irrelevant, ineffective or, on the whole, a failure due to evidence that the maternal mortality rate (MMR) in developing countries had not reduced. Although, worldwide data show that, by choice or out of necessity, 47 percent of births in the developing world are assisted by TBAs and/or family members, funding for TBA training has been reduced and moved to providing skilled birth attendants for all births. Any shift in policy needs to be supported by appropriate evidence on TBA roles in providing maternal and infant health care service and effectiveness of the training programmes. This article reviews literature on the characteristics and role of TBAs in South Asia with an emphasis on India. The aim was to assess the contribution of TBAs in providing maternal and infant health care service at different stages of pregnancy and after-delivery and birthing practices adopted in home births. The review of role revealed that apart from TBAs, there are various other people in the community also involved in making decisions about the welfare and health of the birthing mother and new born baby. However, TBAs have changing, localised but nonetheless significant roles in delivery, postnatal and infant care in India. Certain traditional birthing practices such as bathing babies immediately after birth, not weighing babies after birth and not feeding with colostrum are adopted in home births as well as health institutions in India. There is therefore a thin precarious balance between the application of biomedical and traditional knowledge. Customary rituals and perceptions essentially affect practices in home and institutional births and hence training of TBAs need to be implemented in conjunction with community awareness programmes.

Pandemic (H1N1) 2009 Influenza Outbreak in Australia: Impact on Emergency Departments.

Executive summary Objective: The aims of this study were to identify the impact of Pandemic (H1N1) 2009 Influenza on Australian Emergency Departments (EDs) and their staff, and to inform planning, preparedness, and response management arrangements for future pandemics, as well as managing infectious patients presenting to EDs in everyday practice. Methods This study involved three elements: 1. The first element of the study was an examination of published material including published statistics. Standard literature research methods were used to identify relevant published articles. In addition, data about ED demand was obtained from Australian Government Department of Health and Ageing (DoHA) publications, with several state health departments providing more detailed data. 2. The second element of the study was a survey of Directors of Emergency Medicine identified with the assistance of the Australasian College for Emergency Medicine (ACEM). This survey retrieved data about demand for ED services and elicited qualitative comments on the impact of the pandemic on ED management. 3. The third element of the study was a survey of ED staff. A questionnaire was emailed to members of three professional colleges—the ACEM; the Australian College of Emergency Nursing (ACEN); and the College of Emergency Nursing Australasia (CENA). The overall response rate for the survey was 18.4%, with 618 usable responses from 3355 distributed questionnaires. Topics covered by the survey included ED conditions during the (H1N1) 2009 influenza pandemic; information received about Pandemic (H1N1) 2009 Influenza; pandemic plans; the impact of the pandemic on ED staff with respect to stress; illness prevention measures; support received from others in work role; staff and others’ illness during the pandemic; other factors causing ED staff to miss work during the pandemic; and vaccination against Pandemic (H1N1) 2009 Influenza. Both qualitative and quantitative data were collected and analysed. Results: The results obtained from Directors of Emergency Medicine quantifying the impact of the pandemic were too limited for interpretation. Data sourced from health departments and published sources demonstrated an increase in influenza-like illness (ILI) presentations of between one and a half and three times the normal level of presentations of ILIs. Directors of Emergency Medicine reported a reasonable level of preparation for the pandemic, with most reporting the use of pandemic plans that translated into relatively effective operational infection control responses. Directors reported a highly significant impact on EDs and their staff from the pandemic. Growth in demand and related ED congestion were highly significant factors causing distress within the departments. Most (64%) respondents established a ‘flu clinic’ either as part of Pandemic (H1N1) 2009 Influenza Outbreak in Australia: Impact on Emergency Departments. the ED operations or external to it. They did not note a significantly higher rate of sick leave than usual. Responses relating to the impact on staff were proportional to the size of the colleges. Most respondents felt strongly that Pandemic (H1N1) 2009 Influenza had a significant impact on demand in their ED, with most patients having low levels of clinical urgency. Most respondents felt that the pandemic had a negative impact on the care of other patients, and 94% revealed some increase in stress due to lack of space for patients, increased demand, and filling staff deficits. Levels of concern about themselves or their family members contracting the illness were less significant than expected. Nurses displayed significantly higher levels of stress overall, particularly in relation to skill-mix requirements, lack of supplies and equipment, and patient and patients’ family aggression. More than one-third of respondents became ill with an ILI. Whilst respondents themselves reported taking low levels of sick leave, respondents cited difficulties with replacing absent staff. Ranked from highest to lowest, respondents gained useful support from ED colleagues, ED administration, their hospital occupational health department, hospital administration, professional colleges, state health department, and their unions. Respondents were generally positive about the information they received overall; however, the volume of information was considered excessive and sometimes inconsistent. The media was criticised as scaremongering and sensationalist and as being the cause of many unnecessary presentations to EDs. Of concern to the investigators was that a large proportion (43%) of respondents did not know whether a pandemic plan existed for their department or hospital. A small number of staff reported being redeployed from their usual workplace for personal risk factors or operational reasons. As at the time of survey (29 October –18 December 2009), 26% of ED staff reported being vaccinated against Pandemic (H1N1) 2009 Influenza. Of those not vaccinated, half indicated they would ‘definitely’ or ‘probably’ not get vaccinated, with the main reasons being the vaccine was ‘rushed into production’, ‘not properly tested’, ‘came out too late’, or not needed due to prior infection or exposure, or due to the mildness of the disease. Conclusion: Pandemic (H1N1) 2009 Influenza had a significant impact on Australian Emergency Departments. The pandemic exposed problems in existing plans, particularly a lack of guidelines, general information overload, and confusion due to the lack of a single authoritative information source. Of concern was the high proportion of respondents who did not know if their hospital or department had a pandemic plan. Nationally, the pandemic communication strategy needs a detailed review, with more engagement with media networks to encourage responsible and consistent reporting. Also of concern was the low level of immunisation, and the low level of intention to accept vaccination. This is a problem seen in many previous studies relating to seasonal influenza and health care workers. The design of EDs needs to be addressed to better manage infectious patients. Significant workforce issues were confronted in this pandemic, including maintaining appropriate staffing levels; staff exposure to illness; access to, and appropriate use of, personal protective equipment (PPE); and the difficulties associated with working in PPE for prolonged periods. An administrative issue of note was the reporting requirement, which created considerable additional stress for staff within EDs. Peer and local support strategies helped ensure staff felt their needs were provided for, creating resilience, dependability, and stability in the ED workforce. Policies regarding the establishment of flu clinics need to be reviewed. The ability to create surge capacity within EDs by considering staffing, equipment, physical space, and stores is of primary importance for future pandemics.

Mental harm, rescuers and the Civil Liability Act 2002 (NSW)

At common law, a duty of care may be owed to a claimant who suffers nervous shock or pure mental harm due to witnessing, or hearing about, physical injury caused to another due to a defendant’s negligence. “Pure mental harm” is the ‘impairment of a person’s mental condition’ that is not suffered as a consequence of any other kind of personal injury to them. However, as many accidents have the potential to create a wide circle of mental suffering to bystanders, family members or others not physically injured themselves, it has traditionally been ‘thought impolitic that everybody so affected should be able to recover damages from the tortfeasor.’ ‘To allow such extended recovery would stretch liability too far.’ Nevertheless, whilst adopting a restrictive approach to liability, the common law courts have recognised that a defendant might owe a duty in relation to the pure mental harm suffered by one who foreseeably attends an accident scene to rescue another from a situation created by the defendant’s negligence.

Exploring the relationship between grandparents and their grandchild who has a disability

This thesis reports on the findings of a study which sought to explore the relationship between grandparents and their grandchild who has a disability. In contrast to previous studies, it presents the grandparents’ perspective on the roles and relationships they maintain within their families and adopts a qualitative approach to identify the meanings, symbols and beliefs grandparents attribute to their experiences. Grandparents have played and continue to play an important role in the lives of many families, contributing both symbolic and instrumental support to their grandchildren. Changing life expectancy for older people has meant that many more grandparents and grandchildren now have the opportunity to participate in meaningful interactions and to develop strong relationships. In the future, this will be true for great grandparents and in some cases great great grandparents as well. This presents a number of challenges to all concerned as family members negotiate the often complex arena of family life in the 21st Century. Realizing that a grandchild has a disability adds another degree of complexity to the negotiation of roles and responsibilities of grandparents within families. By focussing on grandparents experiences when their grandchild has a disability, this research both explores a knowledge gap in the current literature and more practicably, will inform both grandparents and their families as they negotiate these challenges. This research makes a significant contribution to knowledge in this area by exploring grandparents’ views on the differences in the relationship they have with their typically developing grandchildren and their grandchild with a disability; the impact having a grandchild with a disability had had on their grandparent identity and whether it impacted on quality of life. As well as reporting on the aims of the study, the papers presented in this thesis report on the key topics and themes identified in the analysis of the transcribed interviews conducted with 22 grandparents whose grandchild has a disability. Article 1 presents an overview of the literature which informs current knowledge in relation to grandparents, presenting a historical and theoretical perspective. Additionally, it presents previous literature which discusses the roles and styles grandparents adopt thus providing a framework which is later used to examine the roles and styles adopted by the grandparents in the study. Article 2 addresses the emotional responses grandparents in the study experienced as they grandparented a child with a disability. Comparing these emotions to that of a roller coaster ride, ranging from absolute sadness and grief to pride and delight, these findings highlight their unique experiences and will be reassuring for other grandparents who experience similar emotional responses. Article 3 discusses from the grandparents’ perspective, how having a grandchild with a disability has impacted on their family. Whilst reporting on the day to day challenges of competing family commitments and conflict, a number of grandparents in this study also commented that the experience had made them closer as a family and that there had been significant changes in how some individual family members now viewed people with disability. Article 4 explores the impact having a grandchild with a disability may have on the grandparents’ sense of identity and enactment of the grandparent role, utilising Neugarten and Weinstein’s (1964) classic grandparenting styles and Kornhaber’s (1996) concepts of latent and functional grandparent identity as a basis for comparison. It provides important insight into grandparenting identity when a child has a disability, suggesting that the grandparenting experience and role enactment may be universal with only the context and delivery varying. In summary, this thesis confirms the valuable role grandparents play in the lives of grandchildren who have a disability and their families. It identifies a number of implications and makes recommendations for future research and practice.

English language study abroad program : an investigation of Hong Kong pre-service teachers’ experiences of a language immersion program

There has been minimal research focused on short-term study abroad language immersion programs, in particular, with home-stay families. The importance of authentic intercultural experience is increasingly clear and was acknowledged as central to the process of language learning (Liddicoat, 2004). In Hong Kong, education programs for pre-service language teachers have significantly emphasised language and intercultural training through short-term study abroad, and these short overseas language immersion courses have become a compulsory component for teacher training (Bodycott & Crew, 2001) in the last decade. This study aims to investigate eight Hong Kong pre-service teachers’ and their home-stay families’ experiences of a short-term (two months) language immersion program in Australia. The focus is on listening to commentaries concerning the development of communicative competence, intercultural competence and professional growth during the out-of-class study abroad experience. The conceptual framework adopted in this study views language and intercultural learning from social constructivist perspectives. Central to this framing is the notion that the internalisation of higher mental functions involves the transfer from the inter-psychological to the intra-psychological plane, that is, a progression process from the socially supported to individually controlled performance. From this perspective, language serves as a way to communicate about, and in relation to, actions and experience. Three research questions were addressed and studied through qualitative methodology. 1. How do the pre-service teachers and their home-stay families perceive the out-of-class component of the program in terms of opportunities for the development of language proficiency and communicative competence? 2. How do the pre-service teachers and their home-stay families perceive the out-of-class component of the program in terms of the development of intercultural competence? 3. How do the pre-service teachers and home-stay families perceive the outof- class component of the program in terms of teachers’ professional growth? Data were generated from multiple data collection methods and analysed through thematic analysis from both a “bottom up” and “top down” approach. The study showed that the pre-service teachers perceived that the immersion program influenced, to varying degrees, their language proficiency, communication and intercultural awareness, as well as their self-awareness and professional growth. These pre-service teachers believed that effective language learning centres on active engagement in the target language community. A mismatch between the views and evaluations of the two groups – the pre-service teachers and the home-stay family members – provides some evidence of misalignments in terms of expectations and perceptions of each other’s roles and responsibilities. The study has highlighted challenges encountered, and provided suggestions for ways of meeting these challenges. The inclusion in the study of the home-stay families’ perceptions and commentaries provided insights, which can inform program development. There is clearly further work to be done in terms of predeparture orientation and preparation, not only for the main participants themselves, the students, but also for the host families.

Social influences on drivers in China

China is one of Asia’s many rapidly-motorising nations and recent increases in private-vehicle ownership have been coupled with an escalation in novice drivers. Several pieces of road safety legislation have been introduced in recent decades in China. While managing the legal aspects of road use is important, social influences on driver behaviour may offer alternative avenues to alter behaviour, particularly in a culture where such factors carry high importance. This paper reports qualitative research with Beijing drivers to investigate social influence factors that have, to date, received little attention in the literature. Findings indicated that family members, friends, and driving instructors appear influential on driver behaviour and that some newly licensed drivers seek additional assistance to facilitate the transition from learning to drive in a controlled environment to driving on the road in complex conditions. Strategies to avoid detection and penalties for inappropriate road use were described, many of which involved the use of a third person. These findings indicate potential barriers to implementing effective traffic enforcement and highlight the importance of understanding culturally-specific social factors relating to driver behaviour.

The tales we tell : exploring the legal stories of Queensland women who kill

The bulk of the homicide research to date has focused on male offending, with little consideration given to women's offending and in particular, their constructions within the courtroom following a homicide-related charge. This thesis examines, in detail, nineteen homicide cases finalised in the Queensland Supreme Courts between 01/01/1997 and 31/12/2002, in order to document and discuss the various legal stories available to women who kill. Predominantly, two “stock stories” are available within the court. The first, presented by the defence, offers the accused woman a victimised position to occupy. Evidence of victimisation is made available through previous abuse, expert testimony from psychologists and psychiatrists, challenges to her mental health, or appeals to her emotional nature. The second stock story, presented by the prosecution, positions the accused woman as angry, full of revenge, calculating and self serving. Such a script is usually supported by witnesses, police evidence, and family members. This thesis examines these competing and contradictory scripts using thematic discourse analysis to examine the court transcripts in detail. It argues that the "truth" of the fatal incident is based on one of these two prevailing scripts. This research destabilises the dominant script of violent female offending in the feminist literature. Most research to date has focussed on explaining the circumstances in which women kill, concentrating attention on the victimisation of the violent offending woman and negating or de-prioritising any volition on her part. By analysing all transcripts of women whose trials were held within the specified period, this research is able to demonstrate the stories used to describe their complex offending, and draw attention to the anger and intent that can occur alongside the victimisation.

CDKN2A mutation in a non-FAMMM kindred with cancers at multiple sites results in a functionally abnormal protein

The CDKN2A gene encodes p16 (CDKN2A), a cell-cycle inhibitor protein which prevents inappropriate cell cycling and, hence, proliferation. Germ-line mutations in CDKN2A predispose to the familial atypical multiple-mole melanoma (FAMMM) syndrome but also have been seen in rare families in which only 1 or 2 individuals are affected by cutaneous malignant melanoma (CMM). We therefore sequenced exons 1alpha and 2 of CDKN2A using lymphocyte DNA isolated from index cases from 67 families with cancers at multiple sites, where the patterns of cancer did not resemble those attributable to known genes such as hMLH1, hMLH2, BRCA1, BRCA2, TP53 or other cancer susceptibility genes. We found one mutation, a mis-sense mutation resulting in a methionine to isoleucine change at codon 53 (M531) of exon 2. The individual tested had developed 2 CMMs but had no dysplastic nevi and lacked a family history of dysplastic nevi or CMM. Other family members had been diagnosed with oral cancer (2 persons), bladder cancer (1 person) and possibly gall-bladder cancer. While this mutation has been reported in Australian and North American melanoma kindreds, we did not observe it in 618 chromosomes from Scottish and Canadian controls. Functional studies revealed that the CDKN2A variant carrying the M531 change was unable to bind effectively to CDK4, showing that this mutation is of pathological significance. Our results have confirmed that CDKN2A mutations are not limited to FAMMM kindreds but also demonstrate that multi-site cancer families without melanoma are very unlikely to contain CDKN2A mutations.

Mutation analysis of the CDKN2A promoter in Australian melanoma families

Approximately 50% of all melanoma families worldwide show linkage to 9p21-22, but only about half of these have been shown to contain germ line CDKN2A mutations. It has been hypothesized that a proportion of these families carry mutations in the noncoding regions of CDKN2A. Several Canadian families have been reported to carry a mutation in the 5' UTR, at position -34 relative to the start site, which gives rise to a novel AUG translation initiation codon that markedly decreases translation from the wild-type AUG (Liu et al., 1999). Haplotype sharing in these Canadian families suggested that this mutation is of British origin. We sequenced 1,327 base pairs (bp) of CDKN2A, making up 1,116 bp of the 5' UTR and promoter, all of exon 1, and 61 bp of intron 1, in at least one melanoma case from 110 Australian families with three or more affected members known not to carry mutations within the p16 coding region. In addition, 431 bp upstream of the start codon was sequenced in an additional 253 affected probands from two-case melanoma families for which the CDKN2A mutation status was unknown. Several known polymorphisms at positions -33, -191, -493, and -735 were detected, in addition to four novel variants at positions 120, -252, -347, and -981 relative to the start codon. One of the probands from a two-case family was found to have the previously reported Q50R mutation. No family member was found to carry the mutation at position -34 or any other disease-associated mutation. For further investigation of noncoding CDKN2A mutations that may affect transcription, allele-specific expression analysis was carried out in 31 of the families with at least three affected members who showed either complete or "indeterminate" 9p haplotype sharing without CDKN2A exonic mutations. Reverse transcription polymerase chain reaction and automated sequencing showed expression of both CDKN2A alleles in all family members tested. The lack of CDKN2A promoter mutations and the absence of transcriptional silencing in the germ line of this cohort of families suggest that mutations in the promoter and 5' UTR play a very limited role in melanoma predisposition.

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.

Incremental entrepreneurship : best practice professionalization across generations

This chapter will introduce Australia’s Dennis family – a case of ‘incremental entrepreneurship’ in the business transition from the first to the second generation. Following the second generation’s formal involvement and ownership in the business, Dennis Family Corporation (DFC) undertook a major professionalization process to formalize the family business and ensure its continued success. The members of the second generation have successfully sustained the entrepreneurial spirit of their family business (albeit in a different style), adding value to the firm in an ‘incremental’ manner. Throughout the chapter there will be a strong emphasis on the family element of DFC and the roles that each family member has played. Bert Dennis, as the founder and incumbent leader of the firm, has witnessed major changes to the business he built from the ground up. His children, in particular his son Grant Dennis as the primary next generation issue champion, have seen the changes from another perspective – ensuring the business remains within the family into the second generation and beyond. The professionalization process was sparked by a commitment from the second generation to continue to ‘make a real go’ of the family business rather than simply liquidating and distributing the assets. The dedication of all the family members to this objective has ensured the success of this process, and ultimately, the longevity of the firm. Although DFC has become more ‘professional’, it has not lost its entrepreneurial character; rather, it has improved the ways in which entrepreneurialism is fostered and pursued in the company. In essence, this case outlines how the implementation of appropriate governance and management practices has allowed the Dennis family to overcome the challenges and maximize the opportunities associated with owning and operating a multigenerational family fi rm. From a theoretical perspective, this case uses the concepts of entrepreneurial orientation (EO) (Lumpkin and Dess 1996) and the resource- based view (RBV) (Habbershon and Williams 1999; Barney 1991; Wernerfelt 1984) to demonstrate how the fi rm has leveraged its familiness to foster an enduring spirit of entrepreneurship and to maintain a sustained competitive advantage.