The evidence-based development of an intervention to address the information needs of adults newly diagnosed with primary brain tumours and their carers

Adults diagnosed with primary brain tumours often experience physical, cognitive and neuropsychiatric impairments and decline in quality of life. Although disease and treatment-related information is commonly provided to cancer patients and carers, newly diagnosed brain tumour patients and their carers report unmet information needs. Few interventions have been designed or proven to address these information needs. Accordingly, a three-study research program, that incorporated both qualitative and quantitative research methods, was designed to: 1) identify and select an intervention to improve the provision of information, and meet the needs of patients with a brain tumour; 2) use an evidence-based approach to establish the content, language and format for the intervention; and 3) assess the acceptability of the intervention, and the feasibility of evaluation, with newly diagnosed brain tumour patients. Study 1: Structured concept mapping techniques were undertaken with 30 health professionals, who identified strategies or items for improving care, and rated each of 42 items for importance, feasibility, and the extent to which such care was provided. Participants also provided data to interpret the relationship between items, which were translated into ‘maps’ of relationships between information and other aspects of health care using multidimensional scaling and hierarchical cluster analysis. Results were discussed by participants in small groups and individual interviews to understand the ratings, and facilitators and barriers to implementation. A care coordinator was rated as the most important strategy by health professionals. Two items directly related to information provision were also seen as highly important: "information to enable the patient or carer to ask questions" and "for doctors to encourage patients to ask questions". Qualitative analyses revealed that information provision was individualised, depending on patients’ information needs and preferences, demographic variables and distress, the characteristics of health professionals who provide information, the relationship between the individual patient and health professional, and influenced by the fragmented nature of the health care system. Based on quantitative and qualitative findings, a brain tumour specific question prompt list (QPL) was chosen for development and feasibility testing. A QPL consists of a list of questions that patients and carers may want to ask their doctors. It is designed to encourage the asking of questions in the medical consultation, allowing patients to control the content, and amount of information provided by health professionals. Study 2: The initial structure and content of the brain tumour specific QPL developed was based upon thematic analyses of 1) patient materials for brain tumour patients, 2) QPLs designed for other patient populations, and 3) clinical practice guidelines for the psychosocial care of glioma patients. An iterative process of review and refinement of content was undertaken via telephone interviews with a convenience sample of 18 patients and/or carers. Successive drafts of QPLs were sent to patients and carers and changes made until no new topics or suggestions arose in four successive interviews (saturation). Once QPL content was established, readability analyses and redrafting were conducted to achieve a sixth-grade reading level. The draft QPL was also reviewed by eight health professionals, and shortened and modified based on their feedback. Professional design of the QPL was conducted and sent to patients and carers for further review. The final QPL contained questions in seven colour-coded sections: 1) diagnosis; 2) prognosis; 3) symptoms and problems; 4) treatment; 5) support; 6) after treatment finishes; and 7) the health professional team. Study 3: A feasibility study was conducted to determine the acceptability of the QPL and the appropriateness of methods, to inform a potential future randomised trial to evaluate its effectiveness. A pre-test post-test design was used with a nonrandomised control group. The control group was provided with ‘standard information’, the intervention group with ‘standard information’ plus the QPL. The primary outcome measure was acceptability of the QPL to participants. Twenty patients from four hospitals were recruited a median of 1 month (range 0-46 months) after diagnosis, and 17 completed baseline and follow-up interviews. Six participants would have preferred to receive the information booklet (standard information or QPL) at a different time, most commonly at diagnosis. Seven participants reported on the acceptability of the QPL: all said that the QPL was helpful, and that it contained questions that were useful to them; six said it made it easier to ask questions. Compared with control group participants’ ratings of ‘standard information’, QPL group participants’ views of the QPL were more positive; the QPL had been read more times, was less likely to be reported as ‘overwhelming’ to read, and was more likely to prompt participants to ask questions of their health professionals. The results from the three studies of this research program add to the body of literature on information provision for brain tumour patients. Together, these studies suggest that a QPL may be appropriate for the neuro-oncology setting and acceptable to patients. The QPL aims to assist patients to express their information needs, enabling health professionals to better provide the type and amount of information that patients need to prepare for treatment and the future. This may help health professionals meet the challenge of giving patients sufficient information, without providing ‘too much’ or ‘unnecessary’ information, or taking away hope. Future studies with rigorous designs are now needed to determine the effectiveness of the QPL.

The effectiveness of a short-term group music therapy intervention for young parents and their children

The quality of early life experiences are known to influence a child’s capacities for emotional, social, cognitive and physical competence throughout their life (Peterson, 1996; Zubrick et al., 2008). These early life experiences are directly affected by parenting and family environments. A lack of positive parenting has significant implications both for children, and the broader communities in which they live (Davies & Cummings, 1994; Dryfoos, 1990; Sanders, 1995). Young parents are known to be at risk of experiencing adverse circumstances that affect their ability to provide positive parenting to their children (Milan et al., 2004; Trad, 1995). There is a need to provide parenting support programs to young parents that offer opportunities for them to come together, support each other and learn ways to provide for their children’s developmental needs in a friendly, engaging and non-judgemental environment. This research project examines the effectiveness of a 10 week group music therapy program Sing & Grow as an early parenting intervention for 535 young parents. Sing & Grow is a national early parenting intervention program funded by the Australian Government and delivered by Playgroup Queensland. It is designed and delivered by Registered Music Therapists for families at risk of marginalisation with children aged from birth to three years. The aim of the program is to improve parenting skills and parent-child interactions, and increase social support networks through participation in a group that is strengths-based and structured in a way that lends itself to modelling, peer learning and facilitated learning. During the 10 weeks parents have opportunities to learn practical, hands-on ways to interact and play with their children that are conducive to positive parent-child relationships and ongoing child development. A range of interactive, nurturing, stimulating and developmental music activities provide the framework for parents to interact and play with their children. This research uses data collected through the Sing & Grow National Evaluation Study to examine outcomes for all participants aged 25 years and younger, who attended programs during the Sing & Grow pilot study and main study from mid-2005 to the end of 2007. The research examines the change from pre to post in self-reported parent behaviours, parent mental health and parent social support, and therapist observed parent-child interactions. A range of statistical analyses are used to address each Research Objective for the young parent population, and for subgroups within this population. Research Objective 1 explored the patterns of attendance in the Sing & Grow program for young parents, and for subgroups within this population. Results showed that levels of attendance were lower than expected and influenced by Indigenous status and source of family income. Patterns of attendance showed a decline over time and incomplete data rates were high which may indicate high dropout rates. Research Objective 2 explored perceived satisfaction, benefits and social support links made. Satisfaction levels with the program and staff were very high. Indigenous status was associated with lower levels of reported satisfaction with both the program and staff. Perceived benefits from participation in the program were very high. Employment status was associated with perceived benefits: parents who were not employed were more likely than employed parents to report that their understanding of child development had increased as a result of participation in the program. Social support connections were reported for participants with other professionals, services and parents. In particular, families were more likely to link up with playgroup staff and services. Those parents who attended six or more sessions were significantly more likely to attend a playgroup than those who attended five sessions or less. Social support connections were related to source of family income, level of education, Indigenous status and language background. Research Objective 3 investigated pre to post change on self-report parenting skills and parent mental health. Results indicated that participation in the Sing & Grow program was associated with improvements in parent mental health. No improvements were found for self-reported parenting skills. Research Objective 4 investigated pre to post change in therapist observation measures of parent-child interactions. Results indicated that participation in the Sing & Grow program was associated with large and significant improvements in parent sensitivity to, engagement with and acceptance of the child. There were significant interactions across time (pre to post) for the parent characteristics of Indigenous status, family income and level of education. Research Objective 5 explored the relationship between the number of sessions attended and extent of change on self-report outcomes and therapist observed outcomes, respectively. For each, an overall change score was devised to ascertain those parents who had made any positive changes over time. Results showed that there was no significant relationship between high attendance and positive change in either the self-report or therapist observed behavioural measures. A risk index was also constructed to test for a relationship between the risk status of the parent. Parents with the highest risk status were significantly more likely to attend six or more sessions than other parents, but risk status was not associated with any differences in parent reported outcomes or therapist observations. The results of this research study indicate that Sing & Grow is effective in improving outcomes for young parents’ mental health, parent-child interactions and social support connections. High attendance by families in the highest category for risk factors may indicate that the program is effective at engaging and retaining parents who are most at-risk and therefore traditionally hard to reach. Very high levels of satisfaction and perceived benefits support this. Further research is required to help confirm the promising evidence from the current study that a short term group music therapy program can support young parents and improve their parenting outcomes. In particular, this needs to address the more disappointing outcomes of the current research study to improve attendance and engagement of all young parents in the program and especially the needs of young Indigenous parents.

Occupational driver safety : conceptualising a leadership-based intervention to improve safe driving performance

Occupational driving crashes are the most common cause of death and injury in the workplace. The physical and psychological outcomes following injury are also very costly to organizations. Thus, safe driving poses a managerial challenge. Some research has attempted to address this issue through modifying discrete and often simple target behaviors (e.g., driver training programs). However, current intervention approaches in the occupational driving field generally do not consider the role of organizational factors in workplace safety. This study adopts the A-B-C framework to identify the contingencies associated with an effective exchange of safety information within the occupational driving context. Utilizing a sample of occupational drivers and their supervisors, this multi-level study examines the contingencies associated with the exchange of safety information within the supervisor-driver relationship. Safety values are identified as an antecedent of the safety information exchange, and the quality of the leader-member exchange relationship and safe driving performance is identified as the behavioral consequences. We also examine the function of role overload as a factor influencing the relationship between safety values and the safety information exchange. Hierarchical Linear Modelling found that role overload moderated the relationship between supervisors’ perceptions of the value given to safety and the safety information exchange. A significant relationship was also found between the safety information exchange and the subsequent quality of the leader-member exchange relationship. Finally, the quality of the leader-member exchange relationship was found to be significantly associated with safe driving performance. Theoretical and practical implications of these results are discussed.

Identifying parent perspectives to guide active travel intervention with small populations : case study in Denver, Colorado

This paper investigates a strategy for guiding school-based active travel intervention. School-based active travel programs address the travel behaviors and perceptions of small target populations (i.e., at individual schools) so they can encourage people to walk or bike. Thus, planners need to know as much as possible about the behaviors and perceptions of their target populations. However, existing strategies for modeling travel behavior and segmenting audiences typically work with larger populations and may not capture the attitudinal diversity of smaller groups. This case study used Q technique to identify salient travel-related attitude types among parents at an elementary school in Denver, Colorado; 161 parents presented their perspectives about school travel by rank-ordering 36 statements from strongly disagree to strongly agree in a normalized distribution, single centered around no opinion. Thirty-nine respondents' cases were selected for case-wise cluster analysis in SPSS according to criteria that made them most likely to walk: proximity to school, grade, and bus service. Analysis revealed five core perspectives that were then correlated with the larger respondent pool: optimistic walkers, fair-weather walkers, drivers of necessity, determined drivers, and fence sitters. Core perspectives are presented—characterized by parents' opinions, personal characteristics, and reported travel behaviors—and recommendations are made for possible intervention approaches. The study concludes that Q technique provides a fine-grained assessment of travel behavior for small populations, which would benefit small-scale behavioral interventions

Things just got really serious : coping in crisis

You have chosen to enter a profession that can afford you a wonderfully rich career. It is a role that has many areas of speciality and many opportunities and challenges in communicating with a vast array of people including patients, families, peers, and management. Inherent in the role are all sorts of potential stressors such as not having the equipment you need at a time you think you crucially need it, working with people you find difficult, shift work, lack of staffing, overcrowding, and the list is sometimes seemingly endless. But there are also obvious advantages to your role such as meeting a large variety of people, helping people to recover, to feel comfortable in your care and supporting families, patients and colleagues. This brings me to the two primary points to this chapter. The first point of this chapter is to understand that sometimes the challenges you may face in the health arena overwhelm your initial understanding of your capacity to cope. That is to say, there will likely be times when you feel overwhelmed or even distraught in the face of a particular situation. The second point is that these same overwhelming experiences can provide a catalyst for you to grow as a human being; to develop beyond the person you perceived yourself to be beforehand. According to Aaron Antonovsky (1985), stress is inherent in the human condition, but further to that, in your role, there is a very high possibility of traumatic experiences as well.

Safety, feasibility and effects of an individualised walking intervention for women undergoing chemotherapy for ovarian cancer : a pilot study

Background: Exercise interventions during adjuvant cancer therapy have been shown to increase functional capacity, relieve fatigue and distress and may assist rates of chemotherapy completion. These studies have been limited to breast, gastric and mixed cancer groups and it is not yet known if a similar intervention is even feasible among women with ovarian cancer. We aimed to assess safety, feasibility and potential effect of a walking intervention in women undergoing chemotherapy for ovarian cancer. Methods: Women newly diagnosed with ovarian cancer were recruited to participate in an individualised walking intervention throughout chemotherapy and were assessed pre-and post-intervention. Feasibility measures included session adherence, compliance with exercise physiologist prescribed walking targets and self-reported program acceptability. Changes in objective physical functioning (6 minute walk test), self-reported distress (Hospital Anxiety and Depression Scale), symptoms (Memorial Symptom Assessment Scale - Physical) and quality of life (Functional Assessment of Cancer Therapy - Ovarian) were calculated, and chemotherapy completion and adverse intervention effects recorded. Results: Seventeen women were enrolled (63% recruitment rate). Mean age was 60 years (SD = 8 years), 88% were diagnosed with FIGO stage III or IV disease, 14 women underwent adjuvant and three neo-adjuvant chemotherapy. On average, women adhered to > 80% of their intervention sessions and complied with 76% of their walking targets, with the majority walking four days a week at moderate intensity for 30 minutes per session. Meaningful improvements were found in physical functioning, physical symptoms, physical well-being and ovarian cancerspecific quality of life. Most women (76%) completed ≥85% of their planned chemotherapy dose. There were no withdrawals or serious adverse events and all women reported the program as being helpful. Conclusions: These positive preliminary results suggest that this walking intervention for women receiving chemotherapy for ovarian cancer is safe, feasible and acceptable and could be used in development of future work. Trial registration: ACTRN12609000252213

Tracking the defining moments of crisis process and practice

Crisis holds the potential for profound change in organizations and industries. The past 50 years of crisis management highlight key shifts in crisis practice, creating opportunities for multiple theories and research tracks. Defining crises such as Tylenol, Exxon Valdez, and September 11 terrorist attacks have influenced or challenged the principles of best practice of crisis communication in public relations. This study traces the development of crisis process and practice by identifying shifts in crisis research and models and mapping these against key management theories and practices. The findings define three crisis domains: crisis planning, building and testing predictive models, and mapping and measuring external environmental influences. These crisis domains mirror but lag the evolution of management theory, suggesting challenges for researchers to reshape the research agenda to close the gap and lead the next stage of development in the field of crisis communication for effective organizational outcomes.

A randomized trial of a telephone-delivered exercise intervention for non-urban dwelling women newly diagnosed with breast cancer : exercise for health

Physical activity is important following breast cancer. Trials of non-face-to-face interventions are needed to assist in reaching women living outside major metropolitan areas. This study seeks to evaluate the feasibility and effectiveness of a telephone-delivered, mixed aerobic and resistance exercise intervention for non-urban Australian women with breast cancer. A randomized controlled trial comparing an 8-month intervention delivered by exercise physiologists (n = 73) to usual care (n = 70). Sixty-one percent recruitment rate and 96% retention at 12 months; 79% of women in the intervention group received at least 75% of calls; odds (OR, 95% CI) of meeting intervention targets favored the intervention group for resistance training (OR 3.2; 1.2, 8.9) and aerobic (OR 2.1; 0.8, 5.5) activity. Given the limited availability of physical activity programs for non-urban women with breast cancer, results provide strong support for feasibility and modest support for the efficacy of telephone-delivered interventions.

A child led participatory approach for technology-based intervention

There is significant interest in Human-computer interaction methods that assist in the design of applications for use by children. Many of these approaches draw upon standard HCI methods,such as personas, scenarios, and probes. However, often these techniques require communication and kinds of thinking skills that are designer centred,which prevents children with Autism Spectrum Disorders or other learning and communication disabilities from being able to participate. This study investigates methods that might be used with children with ASD or other learning and communication disabilities to inspire the design of technology based intervention approaches to support their speech and language development. Similar to Iversen and Brodersen, we argue that children with ASD should not be treated as being in some way “cognitively incomplete”. Rather they are experts in their everyday lives and we cannot design future IT without involving them. However, how do we involve them Instead of beginning with HCI methods, we draw upon easy to use technologies and methods used in the therapy professions for child engagement, particularly utilizing the approaches of Hanen (2011) and Greenspan (1998). These approaches emphasize following the child’s lead and ensuring that the child always has a legitimate turn at a detailed level of interaction. In a pilot project, we have studied a child’s interactions with their parents about activities over which they have control – photos that they have taken at school on an iPad. The iPad was simple enough for this child with ASD to use and they enjoyed taking and reviewing photos. We use this small case study as an example of a child-led approach for a child with ASD. We examine interactions from this study in order to assess the possibilities and limitations of the child-led approach for supporting the design of technology based interventions to support speech and language development.

#qldfloods and @QPSMedia: Crisis Communication on Twitter in the 2011 South East Queensland Floods

Social media, including Facebook and Twitter, played an important role in crisis communication at the height of the 2011 South East Queensland floods crisis (10-16 January). This report examines the role of the short-messaging system Twitter in disseminating and sharing crisis information and updates from state and local authorities as well as everyday citizens. We assess the overall use of Twitter, as well as that of the most important emergency service account, the Queensland Police’s @QPSMedia account.

The crisis in ICT education : an academic perspective

A national Discipline-Based Initiative project for ICT, funded by the ALTC, has sought to identify the issues and challenges facing the sector. The crisis in ICT education spans high schools, universities and industry. The demand for skilled ICT graduates is increasing yet enrolments are declining. Several factors contribute to this decline including the perceived quality of teaching and a poor perception of the ICT profession amongst the general public. This paper reports on a consultation process with the academic community. Academic concerns include the capacity of the sector to survive the downturn, and improving relationships with industry which should benefit students, academics and industry. An outcome of the consultation process has been the formation of the Australian Council of Deans of ICT (ACDICT) which will have broad responsibility for addressing the issues affecting ICT higher education.

Much ado about nothing? The surprising persistence of nascent ventures through the global financial crisis

Using the Global Financial Crisis as a natural experiment, we investigate how a major macro-economic crisis affects nascent (i.e., pre-operational) ventures. We hypothesize adverse effects on behaviors, behavioral plans, and expectations for the future, and that these effects would be more pronounced in ventures that are more innovative and/or more relying on loan funding. Overall, we find very limited support for our hypotheses. Our conclusion is that the main reason for the surprising absence of detrimental effects is that a large majority of nascent ventures are mostly affected by a relatively narrow, immediate task environment rather than directly by the fluctuations of the macro-economy.