Impact of a novel nurse-led prechemotherapy education intervention (ChemoEd) on patient distress, symptom burden, and treatment-related information and support needs : results from a randomised, controlled trial

Background: High levels of distress and need for self-care information by patients commencing chemotherapy suggest that current prechemotherapy education is suboptimal. We conducted a randomised, controlled trial of a prechemotherapy education intervention (ChemoEd) to assess impact on patient distress, treatment-related concerns, and the prevalence and severity of and bother caused by six chemotherapy side-effects. Patients and methods: One hundred and ninety-two breast, gastrointestinal, and haematologic cancer patients were recruited before the trial closing prematurely (original target 352). ChemoEd patients received a DVD, question-prompt list, self-care information, an education consultation ≥24 h before first treatment (intervention 1), telephone follow-up 48 h after first treatment (intervention 2), and a face-to-face review immediately before second treatment (intervention 3). Patient outcomes were measured at baseline (T1: pre-education) and immediately preceding treatment cycles 1 (T2) and 3 (T3). Results: ChemoEd did not significantly reduce patient distress. However, a significant decrease in sensory/psychological (P = 0.027) and procedural (P = 0.03) concerns, as well as prevalence and severity of and bother due to vomiting (all P = 0.001), were observed at T3. In addition, subgroup analysis of patients with elevated distress at T1 indicated a significant decrease (P = 0.035) at T2 but not at T3 (P = 0.055) in ChemoEd patients. Conclusions: ChemoEd holds promise to improve patient treatment-related concerns and some physical/psychological outcomes; however, further research is required on more diverse patient populations to ensure generalisability.

Choosing a model of maternity care: decision support needs of Australian women

- BACKGROUND Access to information on the features and outcomes associated with the various models of maternity care available in Australia is vital for women's informed decision-making. This study sought to identify women's preferences for information access and decision-making involvement, as well as their priority information needs, for model of care decision-making. - METHODS A convenience sample of adult women of childbearing age in Queensland, Australia were recruited to complete an online survey assessing their model of care decision support needs. Knowledge on models of care and socio-demographic characteristics were also assessed. - RESULTS Altogether, 641 women provided usable survey data. Of these women, 26.7 percent had heard of all available models of care before starting the survey. Most women wanted access to information on models of care (90.4%) and an active role in decision-making (99.0%). Nine priority information needs were identified: cost, access to choice of mode of birth and care provider, after hours provider contact, continuity of carer in labor/birth, mobility during labor, discussion of the pros/cons of medical procedures, rates of skin-to-skin contact after birth, and availability at a preferred birth location. This information encompassed the priority needs of women across age, birth history, and insurance status subgroups. - CONCLUSIONS This study demonstrates Australian women's unmet needs for information that supports them to effectively compare available options for model of maternity care. Findings provide clear direction on what information should be prioritized and ideal channels for information access to support quality decision-making in practice.

The professional development, resource and support needs of rural and urban ICT teachers

This paper presents findings from the SiMERR National Survey concerning the need priorities of secondary ICT teachers for professional development, resources and student learning experiences. The findings - drawn from a survey of 237 secondary ICT teachers across Australia - provide an opportunity to compare the needs of teachers working in metropolitan, provincial and remote schools. The study found that vacant ICT positions are difficult to fill ond that the novel on dynamic nature of ICT requires teachers to have more extensive opportunities for on-the-job training, collegial collaboration and mentoring than is the case for teachers of more traditional subjects like science and mathematics. The study also found that ICT teachers are commonly required to manage and maintain ICT resources and to assist other staff to use ICT resources, while being allocated insufficient time in which to do these additional activities. The implications of these and other findings are discussed along with recommendations to help address the needs of ICT teachers in different parts of Australia.

Learning, development, and support needs of community palliative care clinical nurse specialists

Background: The palliative care clinical nurse specialist (PC-CNS) is a core member of the specialist palliative care team. According to professional policy, the role has four specific components: clinical practice, education, research, and leadership and management. Little is known about how to support staff in this role. Aim: The aim of this study was to explore what learning, development, and support PC-CNSs in one hospice need to enable them to fulfil all components of their role. Design: Using a descriptive exploratory approach, semi-structured interviews were undertaken with a purposive sample of community PC-CNSs from a hospice in Northern Ireland. Interviews were audio-recorded, transcribed verbatim, and thematically analysed. Findings: Seventeen interviews were analysed and three themes identified: influence of organisational culture, influence of the individual, and learning and development solutions. Conclusions: Participants reported that the PC-CNS role was stressful. They identified that the organisational culture and indeed individuals themselves influenced the learning and development support available to help them fulfil the four components of the role. Working relationships and stability within teams affected how supported individuals felt and had implications for managers in meeting the needs of staff while balancing the needs of the service.

A Comparison of Support Needs Between Rural and Urban Family Caregivers Providing Palliative Care

The present study examined the support needs for urban and rural family caregivers of a palliative family member using a cross-sectional telephone survey in northeastern Ontario, Canada (n = 140; 70 urban, 70 rural). Support needs identified as most important by both the groups were informational. Rural caregivers reported greater unmet needs in tangible support (P =.01). No differences were observed between the groups for emotional or informational support needs (P =.25 and P =.35, respectively). Rural and urban caregivers perceived care for care recipients as accessible (mean accessibility score 1.9, standard deviation [SD] = 0.09 and 1.7, SD = 0.7, respectively, P =.20); the majority indicated that when needed, services were easily and quickly obtained. Although there are similarities in the formal care experiences, rural caregivers experience greater unmet needs in receiving support for instrumental activities. © The Author(s) 2013.

Assessing the support needs of women with early breast cancer in Australia

The purpose of the current study was to access the degree to which the support needs of women with a newly diagnosed, early invasive, primary breast cancer and their families are being met. A random sample of 544 women diagnosed with early breast cancer was recruited to participate in a telephone survey via state and territory cancer registries. Sixteen percent of women reported not receiving enough support during their diagnosis and treatment, and only 65% of these women reported that their families received enough support. The primary sources of support for women and their families were medical practitioners (eg, surgeons, oncologists, and general practitioner) with very few women or family members utilizing mental health professionals. Given the importance of adequate support when being diagnosed and treated for breast cancer, urgent attention needs to be paid to training medical professionals in providing appropriate support and referrals for their patients.

'I'd like to know what causes it, you know, anything I've done?' Are we meeting the information and support needs of patients with macular degeneration? A qualitative study

Objective: To examine patients' experiences of information and support provision for age-related macular degeneration (AMD) in the UK. Study design: Exploratory qualitative study investigating patient experiences of healthcare consultations and living with AMD over 18 months. Setting: Specialist eye clinics at a Birmingham hospital. Participants: 13 patients diagnosed with AMD. Main outcome measures: Analysis of patients' narratives to identify key themes and issues relating to information and support needs. Results: Information was accessed from a variety of sources. There was evidence of clear information deficits prior to diagnosis, following diagnosis and ongoing across the course of the condition. Patients were often ill informed and therefore unable to self-advocate and recognise when support was needed, what support was available and how to access support. Conclusions: AMD patients have a variety of information needs that are variable across the course of the condition. Further research is needed to determine whether these experiences are typical and identify ways of translating the guidelines into practice. Methods of providing information need to be investigated and improved for this patient group.

A comparative analysis of self-determined evaluations of work performance and support needs by adults with mental retardation in supported work and in sheltered workshop environments

The purpose of this study was to determine if there was a difference in the self-determined evaluations of work performance and support needs by adults with mental retardation in supported employment and in sheltered workshop environments. The instrument, Job Observation and Behavior Scale: Opportunity for Self-Determination (JOBS: OSD; Brady, Rosenberg, & Frain, 2006), was administered to 38 adults with mental retardation from sheltered workshops and 32 adults with mental retardation from supported employment environments. Cross-tabulations with Chi-square tests and independent samples t-tests were conducted to evaluate differences between the two groups, sheltered workshop and supported work. Two Multivariate Analyses of Variance (MANOVAs) were conducted to determine the effect of work environment on Quality of Performance (QP) and Types of Support (TS) test scores and their subscales. ^ This study found that there were significant differences between the groups on the QP Behavior and Job Duties subscales. The sheltered workshop group perceived themselves as performing significantly better on job duties than the supported work group. Conversely, the supported work group perceived themselves to have better behavior than the sheltered workshop group. However, there were no significant differences between groups in their perception of support needs for the three subscales. ^ The findings imply that work environment affects the self-determined evaluations of work performance by adults with mental retardation. Recommendations for further study include (a) detailing the characteristics of supported work and sheltered workshops that support and/or discourage self-determined behaviors, (b) exploring the behavior of adults with mental retardation in sheltered workshops and supported work environments, and (c) analysis of the support needs for and understanding of them by adults with mental retardation in sheltered workshops and in supported work environments. ^

A qualitative study of the emotional coping and support needs of children living with a parent with a brain injury

Primary objective: To examine emotional coping and support needs in children of persons with acquired brain injury, with a view to understanding what interventions would be helpful for these children. Design: The study was qualitative, using a thematic analysis approach. Methods and procedure: Six children between 9 and 18 years of age, six parents (three with ABI), and three support workers were interviewed either at home or at a support centre, using a semi-structured interview guide. Results: Children reported using a variety of adaptive and maladaptive emotional coping strategies, but were consistent in expressing a need for credible validation, i.e. sharing experiences with peers. The results are presented under four overarching themes: difficulties faced; emotions experienced; coping strategies; and reported support needs. Conclusions: The results reveal an interaction between the child’s experiences of complex loss that is difficult to acknowledge, emotional distancing between parent and child, and the children’s need for credible validation. All children expressed a desire for talking to peers in a similar situation to themselves, but had not had this opportunity. Interventions should set up such peer interaction to create credible validation for the specific distress suffered by this population.

A longitudinal qualitative exploration of healthcare and informal support needs among survivors of critical illness: the RELINQUISH protocol.

Introduction and background: Survival following critical illness is associated with a significant burden of physical, emotional and psychosocial morbidity. Recovery can be protracted and incomplete, with important and sustained effects upon everyday life, including family life, social participation and return to work. In stark contrast with other critically ill patient groups (eg, those following cardiothoracic surgery), there are comparatively few interventional studies of rehabilitation among the general intensive care unit patient population. This paper outlines the protocol for a sub study of the RECOVER study: a randomised controlled trial evaluating a complex intervention of enhanced ward-based rehabilitation for patients following discharge from intensive care. Methods and analysis: The RELINQUISH study is a nested longitudinal, qualitative study of family support and perceived healthcare needs among RECOVER participants at key stages of the recovery process and at up to 1 year following hospital discharge. Its central premise is that recovery is a dynamic process wherein patients’ needs evolve over time. RELINQUISH is novel in that we will incorporate two parallel strategies into our data analysis: (1) a pragmatic health services-oriented approach, using an a priori analytical construct, the ‘Timing it Right’ framework and (2) a constructivist grounded theory approach which allows the emergence of new themes and theoretical understandings from the data. We will subsequently use Qualitative Health Needs Assessment methodology to inform the development of timely and responsive healthcare interventions throughout the recovery process. Ethics and dissemination: The protocol has been approved by the Lothian Research Ethics Committee (protocol number HSRU011). The study has been added to the UK Clinical Research Network Database (study ID. 9986). The authors will disseminate the findings in peer reviewed publications and to relevant critical care stakeholder groups.

Coordinated research support services at Queensland University of Technology, Australia

Queensland University of Technology (QUT) is a large multidisciplinary university located in Brisbane, Queensland, Australia. QUT is increasing its research focus and is developing its research support services. It has adopted a model of collaboration between the Library, High Performance Computing and Research Support (HPC) and more broadly with Information Technology Services (ITS). Research support services provided by the Library include the provision of information resources and discovery services, bibliographic management software, assistance with publishing (publishing strategies, identifying high impact journals, dealing with publishers and the peer review process), citation analysis and calculating authors’ H Index. Research data management services are being developed by the Library and HPC working in collaboration. The HPC group within ITS supports research computing infrastructure, research development and engagement activities, researcher consultation, high speed computation and data storage systems , 2D/ 3D (immersive) visualisation tools, parallelisation and optimization of research codes, statistics/ data modeling training and support (both qualitative and quantitative) and support for the university’s central Access Grid collaboration facility. Development and engagement activities include participation in research grants and papers, student supervision and internships and the sponsorship, incubation and adoption of new computing technologies for research. ITS also provides other services that support research including ICT training, research infrastructure (networking, data storage, federated access and authorization, virtualization) and corporate systems for research administration. Seminars and workshops are offered to increase awareness and uptake of new and existing services. A series of online surveys on eResearch practices and skills and a number of focus groups was conducted to better inform the development of research support services. Progress towards the provision of research support is described within the context organizational frameworks; resourcing; infrastructure; integration; collaboration; change management; engagement; awareness and skills; new services; and leadership. Challenges to be addressed include the need to redeploy existing operational resources toward new research support services, supporting a rapidly growing research profile across the university, the growing need for the use and support of IT in research programs, finding capacity to address the diverse research support needs across the disciplines, operationalising new research support services following their implementation in project mode, embedding new specialist staff roles, cross-skilling Liaison Librarians, and ensuring continued collaboration between stakeholders.

Analyzing the factors influencing the successful design and uptake of interactive systems to support social networks in urban neighborhoods

In urban residential environments in Australia and other developed countries, Internet access is on the verge of becoming a ubiquitous utility like gas or electricity. From an urban sociology and community informatics perspective, this article discusses new emerging social formations of urban residents that are based on networked individualism and the potential of Internet-based systems to support them. It proposes that one of the main reasons for the disappearance or nonexistence of urban residential communities is a lack of appropriate opportunities and instruments to encourage and support local interaction in urban neighborhoods. The article challenges the view that a mere reappropriation of applications used to support dispersed virtual communities is adequate to meet the place and proximity-based design requirements that community networks in urban neighborhoods pose. It argues that the key factors influencing the successful design and uptake of interactive systems to support social networks in urban neighborhoods include the swarming social behavior of urban dwellers; the dynamics of their existing communicative ecology; and the serendipitous, voluntary, and place-based quality of interaction between residents on the basis of choice, like-mindedness, mutual interest and support needs. Drawing on an analysis of these factors, the conceptual design framework of a prototype system — the urban tribe incubator — is presented.

A study of postdiagnosis breast cancer concerns for women living in rural and remote Queensland. Part II : support issues

This paper presents the recent findings from a study on the postdiagnosis support needs of women with breast cancer living in rural and remote Queensland. The findings presented in this discussion focus on support needs from the perspective of the women experiencing breast cancer as well as health service providers. The tyranny of distance imposes unique hardships, such as separation from family and friends, during a time of great vulnerability for treatment, the need to travel long distances for support and follow-up services, and extra financial burdens, which can combine to cause strains on the marital relationship and family cohesion. Positive indications are, however, that the rural communities operate on strong, informal networks of support. This network of family, friends and community can, and does, play an active role in the provision of emotional and practical support.