Systematic review of interventions to improve the provision of information for adults with primary brain tumors and their caregivers

Background: Adults with primary brain tumors and their caregivers have significant information needs. This review assessed the effect of interventions to improve information provision for adult primary brain tumor patients and/or their caregivers. Methods: We included randomized or nonrandomized trials testing educational interventions that had outcomes of information provision, knowledge, understanding, recall, or satisfaction with the intervention, for adults diagnosed with primary brain tumors and/or their family or caregivers. PubMed, MEDLINE, EMBASE and Cochrane Reviews databases were searched for studies published between 1980 and June 2014. Results: Two randomized controlled, one non-randomized controlled, and 10 single group pre-post trials enrolled more than 411 participants. Five group, four practice/process change and four individual interventions assessed satisfaction (12 studies), knowledge (four studies) or information provision (2 studies). Nine studies reported high rates of satisfaction. Three studies showed statistically significant improvements over time in knowledge and two showed greater information was provided to intervention than control group participants, although statistical testing was not performed. Discussion: The trials assessed intermediate outcomes such as satisfaction, and only 4/13 reported on knowledge improvements. Few trials had a randomized controlled design and risk of bias was either evident or could not be assessed in most domains.

Models of survivorship care provision in adult patients with haematological cancer : an integrative literature review

Purpose: Increasing numbers of haematology cancer survivors warrants identification of the most effective model of survivorship care to survivors from a diverse range of haematological cancers with aggressive treatment regimens. This review aimed to identify models of survivorship care to support the needs of haematology cancer survivors. Methods: An integrative literature review method utilised a search of electronic databases (CINAHL, Medline, PsycInfo, PubMed, EMBASE, PsycArticles, Cochrane Library) for eligible articles (up to July 2014). Articles were included if they proposed or reported the use of a model of care for haematology cancer survivors. Results: Fourteen articles were included in this review. Eight articles proposed and described models of care and six reported the use of a range of survivorship models of care in haematology cancer survivors. No randomised controlled trials or literature reviews were found to have been undertaken specifically with this cohort of cancer survivors. There was variation in the models described and who provided the survivorship care. Conclusion: Due to the lack of studies evaluating the effectiveness of models of care, it is difficult to determine the best model of care for haematology cancer survivors. Many different models of care are being put into practice before robust research is conducted. Therefore well-designed high quality pragmatic randomised controlled trials are required to inform clinical practice.

Factors influencing the provision of end-of-life care in critical care settings : development and testing of a survey instrument

Aim. To develop and psychometrically test a survey instrument to identify the factors influencing the provision of end-of-life care by critical care nurses. Background. Following a decision to withdraw life-sustaining treatment, critical care nurses remain with the patient and their family providing end-of-life care. Identification of factors influencing the provision of this care can give evidence to inform practice development and support nurses. Design. A cross-sectional survey of critical care nurses. Method. An online survey was developed, reviewed by an expert panel and pilot tested to obtain preliminary evidence of its reliability and validity. In May 2011, a convenience sample of critical care nurses (n = 392, response rate 25%) completed the survey. The analytical approach to data obtained from the 58 items measured on a Likert scale included exploratory factor analysis and descriptive statistics. Results. Exploratory factor analysis identified eight factors influencing the provision of end-of-life care: emotional support for nurses, palliative values, patient and family preferences, resources, organizational support, care planning, knowledge and preparedness. Internal consistency of each latent construct was deemed satisfactory. The results of descriptive statistics revealed a strong commitment to the inclusion of families in end-of-life care and the value of this care in the critical care setting. Conclusion. This paper reports preliminary evidence of the psychometric properties of a new survey instrument. The findings may inform practice development opportunities to support critical care nurses in the provision of endof- life care and improve the care that patients and their families receive.

Towards inclusion: Provision for diversity in the transition to school

Policies of inclusion challenge the construct of readiness and require schools to prepare for the diversity of children as they transition to school. However, there is limited empirical evidence concerning how this challenge is met. This paper presents two Australian studies that investigate inclusive practices in the transition to school. Study 1 examined the predictors of child outcomes across a sample of 1831 children in 39 schools. The results indicate that both quantity and quality of programme provision influenced outcomes and that programme effects were particularly potent for children with diverse abilities and backgrounds. Study 2 focuses on pedagogy in three of the schools to highlight how this provision can be achieved. Results show that provisions were reactive, that saliency of children’s needs directed school practices and that professional knowledge impacted on measures of quality. Inclusive processes accounting for both child progress and broader family and teaching influences are necessary for improved transition to school.

Provision of survivorship care for patients with haematological malignancy at completion of treatment: a cancer nursing practice survey study

Purpose Many haematological cancer survivors report long-term physiological and psychosocial effects, which persist far beyond treatment completion. Cancer services have been required to extend care to the post-treatment phase to implement survivorship care strategies into routine practice. As key members of the multidisciplinary team, cancer nurses’ perspectives are essential to inform future developments in survivorship care provision. Methods This is a pilot survey study, involving 119 nurses caring for patients with haematological malignancy in an Australian tertiary cancer care centre. The participants completed an investigator developed survey designed to assess cancer care nurses’ perspectives on their attitudes, confidence levels, and practice in relation to post-treatment survivorship care for patients with a haematological malignancy. Results Overall, the majority of participants agreed that all of the survivorship interventions included in the survey should be within the scope of the nursing role. Nurses reported being least confident in discussing fertility and employment/financial issues with patients and conducting psychosocial distress screening. The interventions performed least often included, discussing fertility, intimacy and sexuality issues and communicating survivorship care with the patient’s primary health care providers. Nurses identified lack of time, limited educational resources, lack of dedicated end-of-treatment consultation and insufficient skills/knowledge as the key barriers to survivorship care provision. Conclusion Cancer centres should implement an appropriate model of survivorship care and provide improved training and educational resources for nurses to enable them to deliver quality survivorship care and meet the needs of haematological cancer survivors.

Empowering the disempowered through voice-inclusive practice: Children’s views on adult-centric educational provision

The United Nations Convention on the Rights of the Child provides a significant platform to include children’s views on issues that affect their lives, yet, in many contexts, particularly in educational practice, children’s perspectives continue to be irregularly sought and are rarely acted upon. By providing children’s perspectives on what they would like adults to know, this article explores a unique view of childhood and the interactions with family, community, educational experiences and well-being. The children’s insights about their worlds that they feel adults are missing potentiate the development and incorporation of voice-inclusive practice. While the sense that each child makes of their Lebenswelt – the ‘ingredients’ – is idiosyncratic and will be influenced by many factors, including peers, teachers, parents, other adults and the media, it is the nature of this personal understanding that is poorly understood, and consequently ignored by adults. By exploring the commentary of more than 1000 children across five countries – Australia, England, New Zealand, Italy and Sweden – this research reveals an overwhelming collection of what the authors describe as ‘comments that rhyme’ in terms of the identification of expressed sentiment and thematic representations of their perspectives.

The provision of visitable housing in Australia: Down to the detail

In response to the ratification of the United Nations Convention of the Rights of People with Disabilities (CRPD), Australian housing industry leaders, supported by the Australian Government, committed to transform their practices voluntarily through the adoption of a national guideline, called Livable Housing Design. They set a target in 2010 that all new housing would be visitable by 2020. Research in this area suggests that the anticipated voluntary transformation is unrealistic and that mandatory regulation will be necessary for any lasting transformation to occur. It also suggests that the assumptions underpinning the Livable Housing Design agreement are unfounded. This paper reports on a study that problematised these assumptions. The study used eleven newly-constructed dwellings in three housing contexts in Brisbane, Australia. It sought to understand the logics-of-practice in providing, and not providing, visitable housing. By examining the specific details that make a dwelling visitable, and interpreting the accounts of builders, designers and developers, the study identified three logics-of-practice which challenged the assumptions underpinning the Livable Housing Design agreement: focus on the point of sale; an aversion to change and deference to external regulators on matters of social inclusion. These were evident in all housing contexts indicating a dominant industry culture regardless of housing context or policy intention. The paper suggests that financial incentives for both the builder and the buyer, demonstration by industry leaders and, ultimately, national regulation is a possible pathway for the Livable Housing Design agreement to reach the 2020 goal. The paper concludes that the Australian Government has three options: to ignore its obligations under the CRPD; to revisit the Livable Housing Design agreement in the hope that it works; or to regulate the housing industry through the National Construction Code to ensure the 2020 target is reached.

Cooperative choice and its framing effect under threshold uncertainty in a provision point mechanism

This paper explores how threshold uncertainty affects cooperative behaviors in the provision of public goods and the prevention of public bads. The following facts motivate our study. First, environmental (resource) problems are either framed as public bads prevention or public goods provision. Second, the occurrence of these problems is characterized by thresholds that are interchangeably represented as "nonconvexity," "bifurcation," "bi-stability," or "catastrophes." Third, the threshold location is mostly unknown. We employ a provision point mechanism with threshold uncertainty and analyze the responses of cooperative behaviors to uncertainty and to the framing for each type of social preferences categorized by a value orientation test. We find that aggregate framing effects are negligible, although the response to the frame is the opposite depending on the type of social preferences. "Cooperative" subjects become more cooperative in negative frames than in positive frames, whereas "individualistic" subjects are less cooperative in negative frames than in positive ones. This finding implies that the insignificance of aggregate framing effects arises from behavioral asymmetry. We also find that the percentage of cooperative choices non-monotonically varies with the degree of threshold uncertainty, irrespective of framing and value orientation. Specifically, the degree of cooperation is highest at intermediate levels of threshold uncertainty and decreases as the uncertainty becomes sufficiently large.

Survivorship care provision for patients with hematologic malignancies: The quest for quality evidence

This is an editorial that depicts the importance for developing more quality evidence to guide the survivorship care provision for patients with hematologic malignancies. Treatments for hematologic malignancies are often complex and debilitating, with increased risk of immune suppression and infections1. Some patients receive allogeneic stem cell transplantation that often requires in-patient stay of several weeks and life-long medical follow up. In recent years, advances in treatment regimens, and an aging population saw an increasing number of patients living with a hematologic malignancies or surviving curative therapy.2 The increased use of targeted therapies in hematologic malignancies (e.g. rituximab for non-Hodgkin lymphoma, bortezomib in multiple myeloma and imatinib in Chronic Myelogenous Leukemia has also resulted in improved overall survival...

Moving from theory to praxis on the fly: Introducing a salutogenic method to expedite mental health care provision in disaster situations

Not a lot is known about most mental illness. Its triggers can rarely be established and nor can its aetiological dynamics, so it is hardly surprising that the accepted treatments for most mental illnesses are really strategies to manage the most overt symptoms. But with such a dearth of knowledge, how can worthy decisions be made about psychiatric interventions, especially given time and budgetary restrictions? This paper introduces a method, extrapolated from Salutogenics; the psycho-social theory of health introduced by Antonovsky in 1987. This method takes a normative stance (that psychiatric health care is for the betterment of psychiatric patients), and applies it to any context where there is a dearth of workable knowledge. In lieu of guiding evidence, the method identifies reasonable alternatives on the fly, enabling rational decisions to be made quickly with limited resources.

Paediatric death and dying: Exploring coping strategies of health professionals and perceptions of support provision

Without question a child’s death is a devastating event for parents and their families. Health professionals working with the dying child and family draw upon their expertise and experience to engage with children, parents, and families on this painful journey. A delicate and sensitive area of practice, it has strong and penetrating effects on health professionals. They employ physical, emotional, spiritual and problem solving strategies to continue to perform this role effectively and to protect their continued sense of well-being. Aim To explore health professionals’ perceptions of bereavement support surrounding the loss of a child. Methods The research was underpinned by social constructionism. Semi-structured interviews were held with 10 health professionals including doctors, nurses and social workers who were directly involved in the care of the dying child and family in 7 cases of paediatric death. Health professional narratives were analysed consistent with Charmarz’s (2006) approach. Results For health professionals, constructions around coping emerged as peer support, personal coping strategies, family support, physical impact of support and spiritual beliefs . Analysis of the narratives also revealed health professionals’ perceptions of their support provision. Conclusion Health professionals involved in caring for dying children and their families use a variety of strategies to cope with the emotional and physical toll of providing support. They also engage in self-assessment to evaluate their support provision and this highlights the need for self-evaluation tools in paediatric palliative care.

Transformation of public space in contemporary urban neighbourhoods of Kathmandu Valley, Nepal: An investigation of changing provision, use and meaning

This research examined the transformation of public space in contemporary urban neighbourhoods of the Kathmandu Valley in Nepal. The development of neighbourhood public space remains a considerable challenge in the present changing context, with significant consequences for public life and social interaction. The findings will aid policy makers, urban planners and designers in addressing the adverse effects of the current urban growth and change, and in winning back public space for the well-being of the local community.

Open educational resources: Enhancing education provision and practice

Open educational resources (OERs), a disruptive technology, made their appearance in early 2002 as a promising tool for enhancing the quality of and access to education generally and higher education in particular. OERs were also perceived to have the potential to reduce costs by reusing learning materials. This brief draws on a study that reviewed the uptake of OERs and related activities in six institutions in Hong Kong, China; India; Malaysia; Pakistan; and Thailand.

Modelling end-of-life care practices: Factors associated with critical care nurse engagement in care provision

Objective To identify factors associated with critical care nurses’ engagement in end-of-life care practices. Methods Multivariable regression modelling was undertaken on 392 responses to an online self-report survey of end-of-life care practices and factors influencing practice by Australian critical care nurses’. Univariate general linear models were built for six end-of-life care practice areas. Results Six statistically significant (p < 0.001) models were developed: Information sharing F(3, 377) = 40.53, adjusted R2 23.8%; Environmental modification F(5, 380) = 19.55, adjusted R2 19.4%; Emotional support F(10, 366) = 12.10, adjusted R2 22.8%; Patient and family centred decision making F(8, 362) = 17.61 adjusted R2 26.4%; Symptom management F(8, 376) = 7.10, adjusted R2 11.3%; and Spiritual support F(9, 367) = 14.66, adjusted R2 24.6%. Stronger agreement with values consistent with a palliative approach, and greater support for patient and family preferences were associated with higher levels of engagement in end-of-life care practices. Higher levels of preparedness and access to opportunities for knowledge acquisition were associated with engagement in the interpersonal practices of patient and family centred decision making and emotional support. Conclusion This study provides evidence for interventions to address factors associated with nurse engagement to increase participation in all end-of-life care practice areas.