The development of a supportive care needs assessment tool for Indigenous people with cancer

Background: Little is known about the supportive care needs of Indigenous people with cancer and to date, existing needs assessment tools have not considered cultural issues for this population. We aimed to adapt an existing supportive care needs assessment tool for use with Indigenous Australians with cancer. Methods: Face-to-face interviews with Indigenous cancer patients (n = 29) and five focus groups with Indigenous key-informants (n = 23) were conducted to assess the face and content validity, cultural acceptability, utility and relevance of the Supportive Care Needs Survey - Short Form 34 (SCNS-SF34) for use with Indigenous patients with cancer. Results: All items from the SCNS-SF34 were shortened and changed to use more appropriate language (e.g. the word 'anxiety' was substituted with 'worry'). Seven questions were omitted (e.g. items on death and future considerations) as they were deemed culturally inappropriate or irrelevant and 12 items were added (e.g. accessible transport). Optional instructions were added before the sexual items. The design and response format of the SCNS-SF34 was modified to make it easier to use for Indigenous cancer patients. Given the extensive modifications to the SCNS-SF34 and the liklihood of a different factor structure we consider this tool to be a new tool rather than a modification. The Supportive care needs assessment tool for Indigenous people (SCNAT-IP) shows promising face and content validity and will be useful in informing services where they need to direct their attention for these patients. Conclusions: Indigenous people with cancer have language, customs and specific needs that are not accommodated within the standard SCNS-SF34. Our SCNAT-IP improves acceptability, relevance and face validity for Indigenous-specific concerns. Our SCNAT-IP will allow screening for supportive care needs that are specific to Indigenous cancer patients' and greatly inform targeted policy development and practice.

Exploring the information practices of people with end stage kidney disease

This small exploratory study sought to understand how people with End Stage Kidney Disease (ESKD) experience the information environment and what information practices they employ in order to inform the decisions they make in relation to treatment and care. Using a constructivist methodology, in-depth interviews were conducted with five people who were receiving haemodialysis in two small satellite dialysis units located in regional and rural communities in New South Wales, Australia. Thematic analysis revealed two types of patients. The first type appears to adopt a received view of information, who do not question their condition; and passively accept information. In the other type, patients were found to be engaged; they actively identified their information needs and quickly learned what that they needed to ask and who to ask. Knowing the information practices of people with ESKD is useful for nephrology nurses when providing patient education.

Examining the health related quality of life of people with end stage kidney disease living in Hanoi, Vietnam

Background: The prevalence of end-stage kidney disease (ESKD) patients is increasing in Vietnam; however, the impact of ESKD and its treatment on a person’s quality of life (QOL) is not well understood. Objective: This research sought to examine the association between monthly income, comorbidity, length of time on dialysis, social support and health-related quality of life (HRQOL) among Vietnamese ESKD patients. Method: Using a descriptive design, 95 patients who were receiving haemodialysis (HD) and peritoneal dialysis (PD) from one hospital in Hanoi, were conveniently sampled. Results: ESKD patients reported having a moderate level of HRQOL. Factors associated with QOL were social support (r= .268, p<.05), comorbid health conditions (r= –.185, p<.05), and length of time on dialysis (r= .182, p<.05). However, monthly income was not significantly related to HRQOL (p>.05). Conclusion: The results seem to indicate that ESKD patients in Vietnam have a high level of support from family members, friends and significant others. There was also a negative impact of comorbid conditions on the QOL of these patients. Based on the results of this study, nurses ought to develop nursing interventions which will lead to a better QOL for patients, and further research into the QOL for ESKD patients in Vietnam is warranted.

What information-related activities do people with ESKD use?

Background Information practice is an emerging area of research that seeks to reveal how people learn to connect with the complex multimodal information landscapes that informs their ability to make decisions. Previous research has identified that people with end stage kidney disease (ESKD) tend to adopt a ‘received’ or ‘engaged’ view of information but little is known about the activities of information practice. Objectives This research project sought to identify the: i) information-related activities; and ii) how information is used. Methods Using a constructivist qualitative methodology, ten people with ESKD living in a large metropolitan city were purposively selected and interviewed. Data was subject to thematic analysis by researchers from nursing and information science. Saturation of themes was achieved. Results Participants were between 38 and 72 years, had been receiving kidney replacement therapy from 2 weeks to 31 years. Eight participants reported having access to the internet but none participated in chat rooms. The activities were conceptualized into themes as listening, seeking, searching, sharing and observing. These activities enabled people to create, reflect on and evaluate the information needed to inform their decision-making Conclusion/Application to Clinical Practice The information practice research approach will enable a better understanding of the underlying relationship between information, knowledge and experience to be better understood. For renal nurses who are involved in patient education being able to recognise the way people use information will assist in individualizing educational sessions and tailoring teaching strategies to make it more meaningful.

Risk factors for malnutrition in community-dwelling people with Parkinson’s disease

In the elderly, the risks for protein-energy malnutrition from older age, dementia, depression and living alone have been well-documented. Other risk factors including anorexia, gastrointestinal dysfunction, loss of olfactory and taste senses and early satiety have also been suggested to contribute to poor nutritional status. In Parkinson’s disease (PD), it has been suggested that the disease symptoms may predispose people with PD to malnutrition. However, the risks for malnutrition in this population are not well-understood. The current study’s aim was to determine malnutrition risk factors in community-dwelling adults with PD. Nutritional status was assessed using the Patient-Generated Subjective Global Assessment (PG-SGA). Data about age, time since diagnosis, medications and living situation were collected. Levodopa equivalent doses (LDED) and LDED per kg body weight (mg/kg) were calculated. Depression and anxiety were measured using the Beck’s Depression Inventory (BDI) and Spielberger Trait Anxiety questionnaire, respectively. Cognitive function was assessed using the Addenbrooke’s Cognitive Examination (ACE-R). Non-motor symptoms were assessed using the Scales for Outcomes in Parkinson's disease-Autonomic (SCOPA-AUT) and Modified Constipation Assessment Scale (MCAS). A total of 125 community-dwelling people with PD were included, average age of 70.2±9.3(35-92) years and average time since diagnosis of 7.3±5.9(0–31) years. Average body mass index (BMI) was 26.0±5.5kg/m2. Of these, 15% (n=19) were malnourished (SGA-B). Multivariate logistic regression analysis revealed that older age (OR=1.16, CI=1.02-1.31), more depressive symptoms (OR=1.26, CI=1.07-1.48), lower levels of anxiety (OR=.90, CI=.82-.99), and higher LDED per kg body weight (OR=1.57, CI=1.14-2.15) significantly increased malnutrition risk. Cognitive function, living situation, number of prescription medications, LDED, years since diagnosis and the severity of non-motor symptoms did not significantly influence malnutrition risk. Malnutrition results in poorer health outcomes. Proactively addressing the risk factors can help prevent declines in nutritional status. In the current study, older people with PD with depression and greater amounts of levodopa per body weight were at increased malnutrition risk.

Malnutrition in a sample of community-dwelling people with Parkinson’s disease

Objective: Malnutrition results in poor health outcomes, and people with Parkinson’s disease may be more at risk of malnutrition. However, the prevalence of malnutrition in Parkinson’s disease is not yet well defined. The aim of this study is to provide an estimate of the extent of malnutrition in community-dwelling people with Parkinson’s disease. Methods: This is a cross-sectional study of people with Parkinson’s disease residing within a 2 hour driving radius of Brisbane, Australia. The Subjective Global Assessment (SGA) and scored Patient Generated Subjective Global Assessment (PG-SGA) were used to assess nutritional status. Body weight, standing or knee height, mid-arm circumference and waist circumference were measured. Results: Nineteen (15%) of the participants were moderately malnourished (SGA-B). The median PG-SGA score of the SGA-B group was 8 (4 – 15), significantly higher than the SGA-A group, U=1860.5,p<.05. The symptoms most influencing intake were loss of appetite, constipation, early satiety and problems swallowing. Conclusions: As with other populations, malnutrition remains under-recognised and undiagnosed in people with Parkinson’s disease. Regular screening of nutritional status in people with Parkinson’s disease by health professionals with whom they have regular contact should occur to identify those who may benefit from further nutrition assessment and intervention.

Comparison of two methods to assess malnutrition in community-dwelling people with Parkinson's disease

Nutritional status in people with Parkinson’s disease (PD) has previously been assessed in a number of ways including BMI, % weight loss and the Mini-Nutritional Assessment(MNA). The symptoms of the disease and the side effects of medication used to manage them result in a number of nutrition impact symptoms that can negatively influence intake. These include chewing and swallowing difficulties, lack of appetite, nausea, and taste and smell changes, among others. Community-dwelling people with PD, aged >18 years, were recruited (n=97, 61 M, 36 F). The Patient-Generated Subjective Global Assessment(PG-SGA) and (MNA) were used to assess nutritional status. Weight, height, mid-arm circumference(MAC) and calf circumference were measured. Based on SGA, 16(16.5%) were moderately malnourished (SGA B) while none were severely malnourished (SGA C). The MNA identified 2(2.0%) as malnourished and 22(22.7%) as at risk of malnutrition. Mean MNA scores were different between the three groups,F(2,37)=7.30,p<.05 but not different between SGA B (21.0(2.9)) and MNA at risk (21.8(1.4)) participants. MAC and calf circumference were also different between the three groups,F(2,37)=5.51,p<.05 and F(2,37)=15.33,p<.05 but not between the SGA B (26.2(4.2), 33.3(2.8)) and MNA at risk (28.4(5.6), 36.4(4.7)) participants. The MNA results are similar to other PD studies using MNA where prevalence of malnutrition was between 0-2% with 20-33% at risk of malnutrition. In this population, the PG-SGA may be more sensitive to assessing malnutrition where nutrition impact symptoms influence intake. With society’s increasing body size, it might also be more appropriate as it does not rely on MAC and calf circumference measures.

Development and review of vignettes representing older people with cognitive impairment

This paper describes a process undertaken to develop and review five clinical vignettes to be used in geriatric nursing educational research. The purpose of this process was to provide valid depictions of delirium and its subtypes and distinguish delirium from dementia. Five vignettes depicting hospital bedside interactions between nursing staff, family, and an older patient who displayed signs of one of the following conditions: delirium (hyper and hypo-active types respectively), dementia, or delirium (both types) superimposed on dementia were constructed. Vignette accuracy and reliability was established using a multistage process that culminated in formal review by a group of ten international nursing and medical delirium experts. The final five vignettes accurately depicted the given scenario as agreed by the experts and were at an appropriate level of simplicity and clarity. Given the increased interest in vignettes for both nursing research and educational purposes, the described method of vignette development and review has the ability to assist other vignette developers in creating reliable representations of their desired clinical scenarios.

Educational accountability tests, social and legal inclusion approaches to discrimination for students with disability : a national case study from Australia

The UN Convention on the Rights of Persons with Disability (CRPD) promotes equal and full participation by children in education. Equity of educational access for all students, including students with disability, free from discrimination, is the first stated national goal of Australian education (MCEETYA 2008). Australian federal disability discrimination law, the Disability Discrimination Act 1992 (DDA), follows the Convention, with the federal Disability Standards for Education 2005 (DSE) enacting specific requirements for education. This article discusses equity of processes for inclusion of students with disability in Australian educational accountability testing, including international tests in which many countries participate. The conclusion drawn is that equitable inclusion of students with disability in current Australian educational accountability testing in not occurring from a social perspective and is not in principle compliant with law. However, given the reluctance of courts to intervene in education matters and the uncertainty of an outcome in any court consideration, the discussion shows that equitable inclusion in accountability systems is available through policy change rather than expensive, and possibly unsuccessful, legal challenges.

The assessment of students with disabilities : the Australian law as to reasonable adjustment and academic integrity

This paper explains the legislation which underpins the right to reasonable adjustment in education for students with disabilities in Australian schools. It gives examples of the kinds of adjustment which may be made to promote equality of opportunity in the area of assessment. It also considers how the law has constructed the border between reasonable adjustment and academic integrity.

A systematic review of psychological interventions for excessive alcohol consumption among people with psychotic disorders

Objective: Excessive alcohol consumption is common among people with psychotic disorders. While there is an extensive literature on the efficacy of psychological treatments for excessive drinking, few studies have examined interventions addressing this issue among people with psychotic disorders. Method: Systematic searches in PubMed and PsycINFO were conducted to identify randomized controlled trials comparing manual guided psychological interventions for excessive alcohol consumption among individuals with psychotic disorders. Of the 429 articles identified, 7 met inclusion criteria. Data were extracted from each study regarding study sample characteristics, design, results, clinical significance of alcohol consumption results, and methodological limitations. Results: Assessment interviews, brief motivational interventions and lengthier cognitive behavior therapy have been associated with reductions in alcohol consumption among people with psychosis. While brief interventions (i.e., 1-2 sessions) were generally as effective as longer duration psychological interventions (i.e., 10 session) for reducing alcohol consumption, longer interventions provided additional benefits for depression, functioning and other alcohol outcomes. Conclusion: Excessive alcohol consumption among people with psychotic disorders is responsive to psychological interventions. It is imperative that such approaches are integrated within standard care for people with psychosis.

Does the addition of integrated cognitive behaviour therapy and motivational interviewing improve the outcomes of standard care for young people with comorbid depression and substance misuse?

Background: The high rates of comorbid depression and substance use in young people have been associated with a range of adverse outcomes. Yet, few treatment studies have been conducted with this population. Objective: To determine if the addition of Motivational Interviewing and Cognitive Behaviour Therapy (MI/CBT) to standard alcohol and other drug (AOD) care improves the outcomes of young people with comorbid depression and substance use. Participants and Setting: Participants comprised 88 young people with comorbid depression (Kessler 10 score of > 17) and substance use (mainly alcohol/cannabis) seeking treatment at two youth AOD services in Melbourne, Australia. Sixty young people received MI/CBT in addition to standard care (SC) and 28 received SC alone. Outcomes Measures: Primary outcome measures were depressive symptoms and drug and alcohol use in the past month. Assessments were conducted at baseline, 3 and 6 months follow up. Results and Conclusions: The addition of MI/CBT to SC was associated with a significantly greater rate of change in depression, cannabis use, motivation to change substance use and social contact in the first 3 months. However, those who received SC had achieved similar improvements on these variables by 6 months follow up. All young people achieved significant improvements in functioning and quality of life variables over time, regardless of the treatment group. No changes in alcohol or other drug use were found in either group. The delivery of MI/CBT in addition to standard AOD care may offer accelerated treatment gains in the short-term.

Making sense of mental illness as a full human experience : Perspective of illness and recovery held by people with a mental illness living in the community.

Recovery is a highly contextualized concept amid divergent interpretations and unique experiences. There is substantial current interest in building evidence about recovery from mental illness in order to inform best practice founded in the ways people find to live productive and meaningful lives. This paper presents some accounts related to recovery and illness expressed by eight people through a Participatory Action Research project. The research facilitated entry to the subjective experiences of living in the community as an artist with a mental illness. The people in the research shared an integrated understanding of illness, recovery and identity. Their understanding provided insight into mental illness as an inseparable aspect of who they were. Further, specific issue was raised of recovery as a clinical term with a requirement to meet distinct conventions of recovery. This paper emphasizes that being ill and being well, for the person with a mental illness, is a dynamic and complex development not easily explained or transformed into uniform process or outcomes. Attempts to establish an integral or consensual approach to recovery has, to date, disregarded mental illness as a full human experience. This paper argues that broader frameworks for thinking and responding to the dynamic processes of mental illness and recovery are needed and require acknowledgment of competing and contradictory ideas.