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.

Gender and the capacity of women with NIDDM to implement medical advice

This qualitative study of women with non-insulin dependent diabetes mellitus (NIDDM) examined constructions of their diabetes management and socio-familial relationships as potential sources of support. Semi-structured interview data was collected from 16 women. The transcripts were analysed with the aim of examining the ways in which Sender relations structured women's accounts of health-related behaviours. Women talked about themselves as wives, mothers, being pregnant and parenting, and friends of other women in ways that demonstrated how caring for others impeded their capacity to care for themselves. Meeting the food preferences of husbands and dietary requirements of diabetic husbands were dominant themes in women's accounts of marriage, and in various ways women justified their husbands' lack of support. Furthermore, the care of others during pregnancy and parenting was also an obstacle to women caring for themselves. An awareness of the gender politics inherent within social and family contexts is crucial to improving the effectiveness of medical advice for diabetes management.

The population dynamics of the Galapagos Flightless Cormorant Phalacrocorax harrisi in relation to sea temperature

The Flightless Cormorant Phalacrocorax harrisi is restricted to c. 400 km of the western coastline of the Galápagos archipelago coinciding with the local occurrence of seasonal upwelling of oceanic currents. Individuals frequently make more than one breeding attempt per year, usually change mates, and when juveniles are raised, females desert them to the further care of their mates who complete the rearing alone. Here we report data from a ten-year historical study of a colony stretching c.2 km along the coast-line and representing c. 12% of the total population of the species. The number of clutches laid and juveniles fledged were linked to the occurrence of cold water in off-shore foraging grounds. Most Flightless Cormorants have attachments to local stretches of coastline several hundred metres long. However, a few birds travelled many kilometres, including between colonies, sometimes over open sea. We show that males invest more in nest-building and feeding of the offspring than their mates, and we relate this to the (presumed) in-bred nature of the colony and to male and female reproductive strategies. Our data validate a published demographic model of the species (Valle 1995).

A longitudinal study of grieving in family caregivers of people with dementia

A longitudinal study of grieving in family caregivers of people with dementia Recent research into dementia has identified the long term impact that the role of care giving for a relative with dementia has on family members This is largely due to the cognitive decline that characterises dementia and the losses that can be directly attributed to this. These losses include loss of memories, relationships and intimacy, and are often ambiguous so that the grief that accompanies them is commonly not recognised or acknowledged. The role and impact of pre-death or anticipatory grief has not previously been widely considered as a factor influencing health and well-being of family caregivers. Studies of grief in caregivers of a relative with dementia have concluded that grief is one of the greatest barriers to care giving and is a primary determinant of caregiver well-being. The accumulation of losses, in conjunction with experiences unique to dementia care giving, place family caregivers at risk of complicated grief. This occurs when integration of the death does not take place following bereavement and has been associated with a range of negative health outcomes. The aim of this research was to determine the influence of grief, in addition to other factors representing both positive and negative aspects of the role, on the health related quality of life of family caregivers of people with dementia, prior to and following the death of their relative with dementia. An exploratory research project underpinned by a conceptual framework of caregivers’ adaptation in the context of subjective appraisal of the strains and gains in their role was undertaken. The research comprised three studies. Study 1 was a scoping study that involved a series of semi-structured interviews with thirteen participants who were family caregivers of people with severe dementia or whose relative with dementia had died in the previous twelve months. The results of this study in conjunction with factors identified in the literature informed data collection for the further studies. Study 2 was a cross sectional survey of fifty caregivers recruited when their relative was in the moderate to severe stage of dementia. This study provided the baseline data for Study 3, a prospective cohort follow up study. Study 3 consisted of seventeen participants followed up at two time points after the death of their relative with dementia: six weeks and then six months following the death of the relative with dementia. The scoping study indicated that differences in appraisal of the care giving role and encounters with health professionals were related to levels of grief of caregivers prior to and following the death of the relative with dementia. This was supported in the baseline and follow up studies. In the baseline study, after adjusting for all variables in multivariate regression models, subjective appraisal of burden was found to make a significant contribution (p<.05) to mental health related quality of life. The two dependent variables, anticipatory grief and mental health related quality of life, were significantly (p<.01) correlated at a bivariate level. In the follow up study, linear mixed modelling and multiple regression analysis of data found that subjective appraisal of burden and resilience were significantly associated (p<.05 and p<.01, respectively) with mental health related quality of life over time. In addition, bereavement and complicated grief were significantly associated (p<.05) with mental health following the death of the relative. In this study social support and satisfaction with end of life care were found to be statistically associated (p<.05) with physical health related quality of life over time. The strong relationship between grief of caregivers and their health related quality of life over the entire care giving trajectory and period following the death of their relative highlights the urgent need for further research and interventions in this area. Overall results indicate that addressing the risk and protective factors including subjective appraisal of their care giving role, resilience, social support and satisfaction with end of life care of their relative, has the potential to both ameliorate negative health outcomes and to promote improved health for these caregivers. This research provides important information for development of targeted and appropriate interventions that aim to promote resilience and reduce the personal burden on caregivers of people with dementia.

Australian Diabetes Foot Network : practical guideline on the provision of footwear for people with diabetes

Trauma, in the form of pressure and/or friction from footwear, is a common cause of foot ulceration in people with diabetes. These practical recommendations regarding the provision of footwear for people with diabetes were agreed upon following review of existing position statements and clinical guidelines. The aim of this process was not to re-invent existing guidelines but to provide practical guidance for health professionals on how they can best deliver these recommendations within the Australian health system. Where information was lacking or inconsistent, a consensus was reached following discussion by all authors. Appropriately prescribed footwear, used alone or in conjunction with custom-made foot orthoses, can reduce pedal pressures and reduce the risk of foot ulceration. It is important for all health professionals involved in the care of people with diabetes to both assess and make recommendations on the footwear needs of their clients or to refer to health professionals with such skills and knowledge. Individuals with more complex footwear needs (for example those who require custom-made medical grade footwear and orthoses) should be referred to health professionals with experience in the prescription of these modalities and who are able to provide appropriate and timely follow-up. Where financial disadvantage is a barrier to individuals acquiring appropriate footwear, health care professionals should be aware of state and territory based equipment funding schemes that can provide financial assistance. Aboriginal and Torres Strait Islanders and people living in rural and remote areas are likely to have limited access to a broad range of footwear. Provision of appropriate footwear to people with diabetes in these communities needs be addressed as part of a comprehensive national strategy to reduce the burden of diabetes and its complications on the health system.

What is the evidence to guide best practice for the management of older people with cognitive impairment presenting to emergency departments? A systematic review

The aim of this study was to conduct a systematic literature review of research-based studies to identify practices designed to meet the specific care needs of older cognitively impaired patients in emergency departments (ED). A systematic literature review of studies was completed using PRIMSA methodology. The search criteria included articles from both emergency and acute care settings. A total of 944 articles were screened, and a total of 43 articles were identified as eligible. The review found a number of intervention studies to improve quality of care for older persons with cognitive impairment carried out or commenced in emergency settings, including interventions to improve cognitive impairment recognition (n = 9) and clinical approaches to reduce falls (n = 1) and both delirium incidence and prevalence (n = 2). Relevant studies carried out in acute care settings regarding cognitive impairment recognition (n = 4) and primary and secondary prevention of delirium (n = 18) and intervention studies that reduced the prescription of deliriogenic drugs (n = 1), reduced behavioral symptoms and discomfort (n = 7), and improved nutritional intake (n = 1) in hospitalized older persons with dementia were also identified. There is limited research available that reports interventions that improve the quality of care of older ED patients with cognitive impairment. Although this review found evidence obtained from the acute care setting, additional research is needed to identify whether these interventions are beneficial in fast-paced emergency settings.

Underlying beliefs influencing Vietnamese nurses and doctors in screening for victims of domestic violence: An exploratory study

Many health professionals in Vietnam have limited knowledge and experience in coordinating care for victims of Domestic Violence (DV). This qualitative study aimed to elicit the beliefs of nurses and doctors that are influencing the care of victims of DV. Data were collected by semistructured interviews with nineteen nurses and doctors. Data were analyzed by content analysis and organized by three main themes; behavioral beliefs, normative beliefs and control beliefs. The outcomes of this study will inform the development of intervention strategies that will enable health professionals to better respond to and manage care for women who experience domestic violence in Vietnam.

Born in another country : women's experience of labour and birth in Queensland, Australia

Background Women born outside Australia make up more than a fifth of the Queensland birthing population and like migrants in other parts of the world face the challenges of cultural dislocation and possible language barriers. Recognising that labour and birth are major life events the aim was to investigate the experiences of these women in comparison to native-born English speaking women. Methods Secondary analysis of data from a population based survey of women who had recently birthed in Queensland. Self-reported clinical outcomes and quality of interpersonal care of 481 women born outside Australia who spoke a language other than English at home were compared with those of 5569 Australian born women speaking only English. Results After adjustment for demographic factors and type of birthing facility, women born in another country were less likely to be induced, but more likely to have constant electronic fetal monitoring (EFM), to give birth lying on their back or side, and to have an episiotomy. Most women felt that they were treated as an individual and with kindness and respect. However, women born outside Australia were less likely to report being looked after ‘very well’ during labour and birth and to be more critical of some aspects of care. Conclusion In comparing the labour and birth experiences of women born outside the country who spoke another language with native-born English speaking women, the present study presents a largely positive picture. However, there were some marked differences in both clinical and interpersonal aspects of care.

Working together-apart : exploring the relationships between formal and informal care networks for people dying at home

Introduction Informal caring networks contribute significantly to end-of-life (EOL) care in the community. However, to ensure that these networks are sustainable, and unpaid carers are not exploited, primary carers need permission and practical assistance to gather networks together and negotiate the help they need. Our aim in this study was to develop an understanding of how formal and informal carers work together when care is being provided in a dying person's home. We were particularly interested in formal providers’ perceptions and knowledge of informal networks of care and in identifying barriers to the networks working together. Methods Qualitative methods, informed by an interpretive approach, were used. In February-July 2012, 10 focus groups were conducted in urban, regional, and rural Australia comprising 88 participants. Findings Our findings show that formal providers are aware, and supportive, of the vital role informal networks play in the care of the dying at home. A number of barriers to formal and informal networks working together more effectively were identified. In particular, we found that the Australian policy of health-promoting palliative is not substantially translating to practice. Conclusion Combinations of formal and informal caring networks are essential to support people and their primary carers. Formal service providers do little to establish, support, or maintain the informal networks although there is much goodwill and scope for them to do so. Further re-orientation towards a health-promoting palliative care and community capacity building approach is suggested.

Palliative care provision for patients with a haematological malignancy : can we do more?

This editorial depicts the current challenges in palliative care provision for patients with a haematological malignancy and the contribution of cancer nurses. There have been significant advancements in the care of patients with a hematological malignancy over the past three or more decades1. Despite this, there still exists a significant mortality risk in curative treatment and many patients with a hematological malignancy will die from their disease1. A growing body of research indicates patients with a hematological malignancy do not receive best practice palliative and end-of-life care2. Shortfalls in care include poor referral patterns to specialist palliative care services, lack of honest discussions regarding death and dying, inadequate spiritual care for patients and families, patients frequently dying in the acute care setting and high levels of patient and family distress2. There have been a number of efforts in the United Kingdom, United States of America, Sweden, and Australia demonstrating palliative and hematology care can co-exist, exemplified through clinical case studies and innovative models of care2. However, deficits in the provision of palliative care for patients with a hematological malignancy persist as evident in the international literature2. Addressing this issue requires research exploring new aspects of a complex scenario; here we suggest priority areas of research...

Nutrition and physical activity policies and practices in family child care homes in oregon : baseline findings from the healthy home child care project

Baseline findings from the Healthy Home Child Care Project include data from Family Child Care Providers (FCCPs) in Oregon (n=53) who completed assessments of nutrition and physical activity policies and practices and BMI data for children in the care of FCCPs (n=205). Results show that a significant percentage of FCCPs failed to meet child care standards in several areas and that 26.8% of children under the care of FCCPs were overweight or obese. These data supported the development of an Extension-delivered intervention specific to FCCPs in Oregon and highlight areas of concern that should be addressed through targeted trainings of FCCPs.

Age, physical inactivity, obesity, health conditions, and health-related quality of life among patients receiving conservative management for musculoskeletal disorders

Background Musculoskeletal conditions and insufficient physical activity have substantial personal and economic costs among contemporary aging societies. This study examined the age distribution, comorbid health conditions, body mass index (BMI), self-reported physical activity levels, and health-related quality of life of patients accessing ambulatory hospital clinics for musculoskeletal disorders. The study also investigated whether comorbidity, BMI, and self-reported physical activity were associated with patients’ health-related quality of life after adjusting for age as a potential confounder. Methods A cross-sectional survey was undertaken in three ambulatory hospital clinics for musculoskeletal disorders. Participants (n=224) reported their reason for referral, age, comorbid health conditions, BMI, physical activity levels (Active Australia Survey), and health-related quality of life (EQ-5D). Descriptive statistics and linear modeling were used to examine the associations between age, comorbidity, BMI, intensity and duration of physical activity, and health-related quality of life. Results The majority of patients (n=115, 51.3%) reported two or more comorbidities. In addition to other musculoskeletal conditions, common comorbidities included depression (n=41, 18.3%), hypertension (n=40, 17.9%), and diabetes (n=39, 17.4%). Approximately one-half of participants (n=110, 49.1%) self-reported insufficient physical activity to meet minimum recommended guidelines and 150 (67.0%) were overweight (n=56, 23.2%), obese (n=64, 28.6%), severely obese (n=16, 7.1%), or very severely obese (n=14, 6.3%), with a higher proportion of older patients affected. A generalized linear model indicated that, after adjusting for age, self-reported physical activity was positively associated (z=4.22, P<0.001), and comorbidities were negatively associated (z=-2.67, P<0.01) with patients’ health-related quality of life. Conclusion Older patients were more frequently affected by undesirable clinical attributes of comorbidity, obesity, and physical inactivity. However, findings from this investigation are compelling for the care of patients of all ages. Potential integration of physical activity behavior change or other effective lifestyle interventions into models of care for patients with musculoskeletal disorders is worthy of further investigation.

Discharge practices for the intensive care patient : a qualitative exploration in the general ward setting

OBJECTIVE: To explore how registered nurses (RNs) in the general ward perceive discharge processes and practices for patients recently discharged from the intensive care unit (ICU). BACKGROUND: Patients discharged from the ICU environment often require complicated and multifaceted care. The ward-based RN is at the forefront of the care of this fragile patient population, yet their views and perceptions have seldom been explored. DESIGN: A qualitative grounded theory design was used to guide focus group interviews with the RN participants. METHODS: Five semi-structured focus group interviews, including 27 RN participants, were conducted in an Australian metropolitan tertiary referral hospital in 2011. Data analyses of transcripts, field notes and memos used concurrent data generation, constant comparative analysis and theoretical sampling. RESULTS: Results yielded a core category of 'two worlds' stressing the disconnectedness between ICU and the ward setting. This category was divided into sub categories of 'communication disconnect' and 'remember the family'. Properties of 'what we say', 'what we write', 'transfer' and 'information needs' respectively were developed within those sub-categories. CONCLUSION: The discharge process for patients within the ICU setting is complicated and largely underappreciated. There are fundamental, misunderstood differences in prioritisation and care of patients between the areas, with a deep understanding of practice requirements of ward based RNs not being understood. The findings of this research may be used to facilitate inter departmental communications and progress practice development.

Informal caring networks for people at end of life: Building social capital in Australian communities

The care of a person living at home near the end of their life is predominantly provided by family carers with the support of health services such as palliative care. In addition, informal caring networks also contribute at times to the support to the dying person and their carer. In this way, these networks can promote social capital in the communities from which they are drawn. This social approach to end of life care enhances community capacity to provide support to those dying at home and their carers. This article examines relevant published literature to explore the conceptual foundations of informal caring networks, examining the place of social capital and community development in the provision of end of life care at home, particularly in the Australian context.