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.

A qualitative investigation into the different health experiences of people living with type II diabetes, in the rural environments

Study Rationale The objective of the study was to explore if and how rural culture influences type II diabetes management and to better understand the social processes that rural people construct in coping with diabetes and its complications. In particular, the study aimed to analyse the interface and interactions between rural people with type II diabetes and the Australian health care system. Theoretical framework and methods The research applied constructivist grounded theory methods within an interpretive interactionist framework. Data from 39 semi-structured interviews with rural and urban people with type II diabetes plus a mix of rural health care providers were analysed to develop a theoretical understanding of the social processes that define diabetes management in that context. Results The analysis suggests that although type II diabetes imposes limitations that require adjustment and adaptation these processes are actively negotiated by rural people within the environmental context to fit the salient social understandings of autonomy and self-reliance. Thus people normalised self-reliant diabetes management behaviours because this was congruent with the rural culture. Factors that informed the actions of normalisation were the relationships between participants and health care professions, support and access to individual resources. Conclusions The findings point to ways in which rural self-reliance is conceived as the primary strategy of diabetic management. People face the paradox of engaging with a health care system that at the same time maximises individual responsibility for health and minimises the social support by which individuals manage the condition. The emphasis on self-reliance gives some legitimacy to a lack of prevention and chronic care services. Success of diabetic management behaviours is contingent on relative resources. Where there is good primary care there develop a number of downstream effects including a sense of empowerment to manage difficult rural environmental circumstances. This has particular bearing on health outcomes for people with fewer resources.

Nifty after fifty: evaluation of a physical activity directory for older people

Objective: To develop a physical activity directory (PAD) for Brisbane people over the age of 50 years for distribution by two methods (given or requested), and to determine its effectiveness in raising awareness and encouraging older people to participate in local physical activity options. Methods: Baseline demographic data and stage of change was collected from 224 participants who received the directory. Participants were interviewed by telephone six weeks later to determine their use of the directory on a number of dimensions. Results: Most participants interviewed at follow-up remembered reading the directory. Participants who requested the directory were significantly more likely than those who were given it to: be contemplators, read the directory, plan to ring a number, plan to attend a class, and to share the directory with others. Participants who were contemplators were significantly more likely to have participated in physical activity of their own and rang a number from the directory. The directory increased over half the participants' awareness of local physical activity options, yet only 7% reported ringing a number and 15% reported doing their own physical activity. Conclusions: The directory was more effective in raising awareness about physical activity options than encouraging people to participate in physical activity, and participants with short-term plans to be more active were more likely to have used the directory. Implications: The directory, even when linked with other services, raises awareness about physical activity options, but has minimal short-term influence on participation.

The People's House : Queensland Parliament House

22 mins documentary

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.

'It had to be my choice' Indigenous smoking cessation and negotiations of risk, resistance and resilience

While Australia is considered a world leader in tobacco control, smoking rates within the Aboriginal and Torres Strait Islander population have not declined at the same rate. This failure highlights an obvious shortcoming of mainstream anti-smoking efforts to effectively understand and engage with the socio-cultural context of Indigenous smoking and smoking cessation experiences. The purpose of this article is to explore the narrative accounts of 20 Indigenous ex-smokers within an urban community and determine the motivators and enablers for successful smoking cessation. Our findings indicated that health risk narratives and the associated social stigma produced through anti-smoking campaigns formed part of a broader apparatus of oppression among Indigenous people, often inspiring resistance and resentment rather than compliance. Instead, a significant life event and supportive relationships were the most useful predictors of successful smoking cessation acting as both a motivator and enabler to behavioural change. Indigenous smoking cessation narratives most commonly involved changing and reordering a person’s life and identity and autonomy over this process was the critical building block to reclaiming control over nicotine addiction. Most promisingly, at an individual level, we found the important role that individual health professionals played in encouraging and supporting Indigenous smoking cessation through positive rather than punitive interactions. More broadly, our findings highlighted the central importance of resilience, empowerment, and trust within health promotion practice.

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.

Career counseling people of African ancestry

One of the most important challenges facing the career counseling profession is developing effective strategies to counsel racially diverse individuals. Understanding the role of racial factors in career counseling requires an understanding of the impact of race on the development and identification of career concerns (Leong & Hartung, 1997 ). This chapter invites an understanding of career counseling with a focus on people of African ancestry. There is scant literature on the career development and career counseling of people of African ancestry including African Americans. This paucity of literature is explained, in part, by the fact that people of African ancestry have unique histories of being excluded from a broad range of human services, including career counseling. This chapter considers career counseling with people of African ancestry. First, the chapter explores how the African cultural belief of Ubuntu may influence individuals and then considers its possible influence on career counseling. Second,the chapter considers how cultural contexts may impact on the career counseling of individuals of African ancestry, specifically African Americans and African immigrants. Finally, social justice and narrative approaches to career counseling are examined as a means to address the needs of people of African ancestry in a range of cultural settings.

A phenomenological study of dream interpretation among the Xhosa-speaking people in rural South Africa

Psychologists investigating dreams in non-Western cultures have generally not considered the meanings of dreams within the unique meaning-structure of the person in his or her societal context. The study was concerned with explicating the indigenous system of dream interpretation of the Xhosa-speaking people, as revealed by acknowledged dream experts, and elaborating upon the life-world of the participants. Fifty dreams and their interpretations were collected from participants, who were traditional healers and their clients. A phenomenological methodology was adopted in explicating the data. Themes explicated included : the physiognomy of the dreamer's life-world as revealed by significant dreams, the interpretation of significant dreams as revealed through action, and human bodiliness as revealed in dream interpretations. The participants' approach to dreams is not based upon an explicit theory, but upon an immediate and pathic understanding of the dream phenomenon. The understanding is based upon the interpreter's concrete understanding of the life-world, which includes the possibility of cosmic integration and continuity between personal and trans-personal realms of being

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.

An interactive and adaptive building layer : strategies for allowing people to become advanced building-users

This paper reports outcomes of a pilot study to develop a conceptual framework to allow people to retrofit a building-layer to gain better control of their own built- environments. The study was initiated by the realisation that discussions surrounding the improvement of building performances tend to be about top-down technological solutions rather than to help and encourage bottom-up involvement of building-users. While users are the ultimate beneficiaries and their feedback is always appreciated, their direct involvements in managing buildings would often be regarded as obstruction or distraction. This is largely because casual interventions by uninformed building-users tend to disrupt the system. Some earlier researches showed however that direct and active participation of users could improve the building performance if appropriate training and/or systems were introduced. We also speculate this in long run would also make the built environment more sustainable. With this in mind, we looked for opportunities to retrofit our own office with an interactive layer to study how we could introduce ad-hoc systems for building-users. The aim of this paper is to describe our vision and initial attempts followed by discussion.