Draft phase two report : "peer review and technical assistance of nine facilities, a move to improve" : technical assistance and staff training for intermediate care facilities for the developmentally disabled (ICFDD) and for those ICFDD for fifteen or fewer persons.

"August, 1988."

Little coin, much care, or, How poor men live : a tale for young persons /

Added, engraved t.p.

Perceptions of the psychological well-being and care of older home care clients : clients and their carers

Aim. To explore and compare older home care clients’ (65+) and their professionals’ perceptions of the clients’ psychological well-being and care and to identify possible differences in these perceptions. Background. Psychological well-being is considered an important dimension of quality of life. With advancing age, older people require home care support to be able to remain in their own home. The main goal of care is to maximise their independence and quality of life. Design. Descriptive, survey design with questionnaire. Methods. A postal questionnaire was distributed to 200 older home care clients and 570 social and health care professionals in 2007. The total response rate was 63%. The questionnaire consisted of questions about clients’ psychological well-being and the provision of care by home care professionals. The differences in responses between clients and professionals were analysed using cross-tabulations, the Pearson Chi-Square Test and Fisher’s Exact Tests. Results. The professional group believed that their clients did not have plans for the future. They believed that their clients felt themselves depressed and suffering from loneliness significantly more often than the client group did. The client group were also significantly more critical of the care (motivating independent actions, physical, psychological and social care) they got from the professional group than how the professionals evaluated the care they gave. Conclusions. To be able to support older clients to continue living at home, professionals need to provide a service that meets client’s own perceptions and complex social and health care needs as well as personal sense of well-being. Relevance to clinical practice. The findings offer useful insights for the professional in planning and delivering appropriate home care services. A better understanding of differences between clients’ and professionals’ perceptions could lead to a better individualised care outcome.

Measurement and correlates of caregiver self-efficacy amongst family caregivers of persons with dementia living in Shanghai, China

Background: Caring for family members with dementia can be a long-term, burdensome task resulting in physical and emotional distress and impairment. Research has demonstrated significantly lower levels of selfefficacy among family caregivers of people with dementia (CGs) than caregivers of relatives with non-dementia diseases. Intervention studies have also suggested that the mental and physical health of dementia CGs could be improved through the enhancement of their self-efficacy. However, studies are limited in terms of the influences of caregiver self-efficacy on caregiver behaviour, subjective burden and health-related quality of life. Of particular note is that there are no studies on the applicability of caregiver self-efficacy in the social context of China. Objective: The purpose of this thesis was to undertake theoretical exploration using Bandura’s (1997) self-efficacy theory to 1) revise the Revised Caregiving Self-Efficacy Scale (C-RCSES) (Steffen, McKibbin, Zeiss, Gallagher-Thompson, & Bandura, 2002), and 2) explore determinants of caregiver self-efficacy and the role of caregiver self-efficacy and other conceptual constructs (including CGs’ socio-demographic characteristics, CRs’ impairment and CGs’ social support) in explaining and predicting caregiver behaviour, subjective burden and health-related quality of life among CGs in China. Methodology: Two studies were undertaken: a qualitative elicitation study with 10 CGs; and a cross-sectional survey with 196 CGs. In the first study, semi-structured interviews were conducted to explore caregiver behaviours and corresponding challenges for their performance. The findings of the study assisted in the development of the initial items and domains of the Chinese version of the Revised Caregiving Self-Efficacy Scale (C-RCSES). Following changes to items in the scale, the second study, a cross-sectional survey with 196 CGs was conducted to evaluate the psychometric properties of C-RCSES and to test a hypothesised self-efficacy model of family caregiving adapted from Bandura’s theory (1997). Results: 35 items were generated from the qualitative data. The content validity of the C-RCSES was assessed and ensured in Study One before being used for the cross-sectional survey. Eight items were removed and five subscales (caregiver self-efficacy for gathering information about treatment, symptoms and health care; obtaining support; responding to problematic behaviours; management of household, personal and medical care; and controlling upsetting thoughts about caregiving) were identified after principal component factor analysis on the cross-sectional survey data. The reliability of the scale is acceptable: the Cronbach’s alpha coefficients for the whole scale and for each subscale were all over .80; and the fourweek test-retest reliabilities for the whole scale and for each subscale ranged from .64 to .85. The concurrent, convergent and divergent validity were also acceptable. CGs reported moderate levels of caregiver self-efficacy. Furthermore, the level of self-efficacy for management of household, personal and medical care was relatively high in comparison to those of the other four domains of caregiver self-efficacy. Caregiver self-efficacy was also significantly influenced by CGs’ socio-demographic characteristics and the caregiving external factors (CR impairment and social support that CGs obtained). The level of caregiver behaviour that CGs reported was higher than that reported in other Chinese research. CGs’ socio-demographics significantly influenced caregiver behaviour, whereas caregiver self-efficacy did not influence caregiver behaviour. Regarding the two external factors, CGs who cared for highly impaired relatives reported high levels of caregiver behaviour, but social support did not influence caregiver behaviour. Regarding caregiver subjective burden and health-related quality of life, CGs reported moderate levels of subjective burden, and their level of healthrelated quality of life was significantly lower than that of the general population in China. The findings also indicated that CGs’ subjective burden and health-related quality of life were influenced by all major factors in the hypothesised model, including CGs’ socio-demographics, CRs’ impairment, social support that CGs obtained, caregiver self-efficacy and caregiver behaviour. Of these factors, caregiver self-efficacy and social support significantly improved their subjective burden and health-related quality of life; whereas caregiver behaviour and CRs’ impairment were detrimental to CGs, such as increasing subjective burden and worsening health-related quality of life. Conclusion: While requiring further exploration, the qualitative study was the first qualitative research conducted in China to provide an in-depth understanding of CGs’ caregiving experience, including their major caregiver behaviours and the corresponding challenges. Meanwhile, although the C-RCSES needs further psychometric testing, it is a useful tool for assessing caregiver self-efficacy in Chinese populations. Results of the qualitative and quantitative study provide useful information for future studies regarding the explanatory power of caregiver self-efficacy to caregiver behaviour, subjective burden and health-related quality of life. Additionally, integrated with Bandura’s theory, the findings from the quantitative study also suggested a further study exploring the role of outcome expectations in caregiver behaviour, subjective burden and healthrelated quality of life.

'Being-in-the-world-of-care' : the lived experiences of older people receiving community aged care packages in Queensland

It has been recognised in current literature that, in general, Australia’s population is ageing and that older people are increasingly choosing to continue to live in the community in their own homes for as long as possible. Such factors of social change are expected to lead to larger numbers of older people requiring community care services for longer periods. Despite this, there is little information available in the literature on the perceptions and experiences of older people regarding community-based care and support. This study explores the lived experience of a small group of older people living in South East Queensland who were receiving a level of care consistent with the Community Aged Care Package (CACP). It also sought to examine the impact and meaning of that care on the older person’s overall lifestyle, autonomy, and personal satisfaction. In-depth interviews were undertaken with these older people, and were analysed using Heidegger’s interpretive hermeneutical phenomenological approach. Shared narratives were then explored using Ricoeur’s narrative analysis framework. In order to sensitise the researcher to the unconscious or symbolic aspects of the care experience, Wolfensberger’s social role valorization theory (SRV) was also utilised during a third phase of analysis. Methodological rigour was strengthened within this study through the use of reflexivity and an in-depth member check discussion that was conducted with each participant. The interviews revealed there were significant differences in expectations, understanding, and perceptions between older people and their carers or service providers. The older person perceived care primarily in relational terms, and clearly preferred active participation in their care and a consistent relationship with a primary carer. Older people also sought to maintain their sense of autonomy, lifestyle, home environment, routines, and relationships, as closely as possible to those that existed prior to their requiring assistance. However, these expectations were not always supported by the care model. On the whole, service providers did not always understand what older people perceived was important within the care context. Carers seldom looked beyond the provision of assistance with specific daily tasks to consider the real impact of care on the older person. The study identified that older people reported a range of experiences when receiving care in their own homes. While some developed healthy and supportive connections with their carers, others experienced ageism, abuse, and exploitation. Unsatisfactory interactions at times resulted in a loss, to varying degrees, of their independence, their possessions, and their connectedness with others. There is therefore a need for service providers to pay more attention to the perceptions and self-perceived needs of older people, to avoid unintended or unnecessary negative impacts occurring within care provision. The study provides valuable information regarding the older person’s experience that will assist in supporting the further development and improvement of this model of care. It is proposed that these insights will enable CACPs to cater more closely to the actual needs and preferences of older people, and to avoid causing preventable harm to care recipients.

Can the Cardiac ARIA Index Improve Cardiac Care for Australia's Indigenous Population?

Background: Timely access to appropriate cardiac care is critical for optimising outcomes. Our aim was to derive an objective, comparable, geographic measure reflecting access to cardiac services for Australia's 20,387 population locations. Methods: An expert panel defined a single patient care pathway. Using geographic information systems (GIS) the numeric/alpha index was modelled in two phases. The acute phase index (numeric) ranged from 1 (access to tertiary centre with PCI ≤1 h) to 8 (no ambulance service, >3 h to medical facility, air transport required). The aftercare index was modelled into 5 alphabetic categories; A (Access to general practitioner, pharmacy, cardiac rehabilitation, pathology ≤1 h) to E (no services available within 1 h). Results: Approximately 70% or 13.9 million people lived within a CardiacARIAindex category 1A location. Disparity continues in access to category 1A cardiac services for 5.8 million (30%) of all Australians, 60% of Aboriginal and Torres Strait Islander people and 32% of people over 65 years of age. In a cardiac emergency only 40% of the Indigenous population reside within one hour of category 1 hospital. Approximately 30% (81,491 Indigenous persons) are more than one to three hours from basic cardiac services. Conclusion: Geographically, the majority of Australian's have timely access for survival of a cardiac event. The CardiacARIAindex objectively demonstrates that the healthcare system may not be providing for the needs of 60% of Indigenous people residing outside the 1A geographic radius. Innovative clinical practice maybe required to address these disparities.

Cancer risk in persons with HIV/AIDS in India: a review and future directions for research

Background India has a large and evolving HIV epidemic. Little is known about cancer risk in Indian persons with HIV/AIDS (PHA) but risk is thought to be low. Methods To describe the state of knowledge about cancer patterns in Indian PHA, we reviewed reports from the international and Indian literature. Results As elsewhere, non-Hodgkin lymphomas dominate the profile of recognized cancers, with immunoblastic/large cell diffuse lymphoma being the most common type. Hodgkin lymphoma is proportionally increased, perhaps because survival with AIDS is truncated by fatal infections. In contrast, Kaposi sarcoma is rare, in association with an apparently low prevalence of Kaposi sarcoma-associated herpesvirus. If confirmed, the reasons for the low prevalence need to be understood. Cervical, anal, vulva/vaginal and penile cancers all appear to be increased in PHA, based on limited data. The association may be confounded by sexual behaviors that transmit both HIV and human papillomavirus. Head and neck tumor incidence may also be increased, an important concern since these tumors are among the most common in India. Based on limited evidence, the increase is at buccal/palatal sites, which are associated with tobacco and betel nut chewing rather than human papillomavirus. Conclusion With improving care of HIV and better management of infections, especially tuberculosis, the longer survival of PHA in India will likely increase the importance of cancer as a clinical problem in India. With the population's geographic and social diversity, India presents unique research opportunities that can be embedded in programs targeting HIV/AIDS and other public health priorities.

A six-year descriptive analysis of hospitalisations for ambulatory care sensitive conditions among people born in refugee-source countries

Background: Hospitalisation for ambulatory care sensitive conditions (ACSHs) has become a recognised tool to measure access to primary care. Timely and effective outpatient care is highly relevant to refugee populations given the past exposure to torture and trauma, and poor access to adequate health care in their countries of origin and during flight. Little is known about ACSHs among resettled refugee populations. With the aim of examining the hypothesis that people from refugee backgrounds have higher ACSHs than people born in the country of hospitalisation, this study analysed a six-year state-wide hospital discharge dataset to estimate ACSH rates for residents born in refugee-source countries and compared them with the Australia-born population. Methods: Hospital discharge data between 1 July 1998 and 30 June 2004 from the Victorian Admitted Episodes Dataset were used to assess ACSH rates among residents born in eight refugee-source countries, and compare them with the Australia-born average. Rate ratios and 95% confidence levels were used to illustrate these comparisons. Four categories of ambulatory care sensitive conditions were measured: total, acute, chronic and vaccine-preventable. Country of birth was used as a proxy indicator of refugee status. Results: When compared with the Australia-born population, hospitalisations for total and acute ambulatory care sensitive conditions were lower among refugee-born persons over the six-year period. Chronic and vaccine-preventable ACSHs were largely similar between the two population groups. Conclusion: Contrary to our hypothesis, preventable hospitalisation rates among people born in refugee-source countries were no higher than Australia-born population averages. More research is needed to elucidate whether low rates of preventable hospitalisation indicate better health status, appropriate health habits, timely and effective care-seeking behaviour and outpatient care, or overall low levels of health care-seeking due to other more pressing needs during the initial period of resettlement. It is important to unpack dimensions of health status and health care access in refugee populations through ad-hoc surveys as the refugee population is not a homogenous group despite sharing a common experience of forced displacement and violence-related trauma.

The impact of a model of nurse education to improve knowledge and recognition of delirium in older persons by registered nurses

Introduction: Delirium is a serious issue associated with high morbidity and mortality in older hospitalised people. Early recognition enables diagnosis and treatment of underlying cause/s, which can lead to improved patient outcomes. However, research shows knowledge and accurate nurse recognition of delirium and is poor and lack of education appears to be a key issue related to this problem. Thus, the purpose of this randomised controlled trial (RCT) was to evaluate, in a sample of registered nurses, the usability and effectiveness of a web-based learning site, designed using constructivist learning principles, to improve acute care nurse knowledge and recognition of delirium. Prior to undertaking the RCT preliminary phases involving; validation of vignettes, video-taping five of the validated vignettes, website development and pilot testing were completed. Methods: The cluster RCT involved consenting registered nurse participants (N = 175) from twelve clinical areas within three acute health care facilities in Queensland, Australia. Data were collected through a variety of measures and instruments. Primary outcomes were improved ability of nurses to recognise delirium using written validated vignettes and improved knowledge of delirium using a delirium knowledge questionnaire. The secondary outcomes were aimed at determining nurse satisfaction and usability of the website. Primary outcome measures were taken at baseline (T1), directly after the intervention (T2) and two months later (T3). The secondary outcomes were measured at T2 by participants in the intervention group. Following baseline data collection remaining participants were assigned to either the intervention (n=75) or control (n=72) group. Participants in the intervention group were given access to the learning intervention while the control group continued to work in their clinical area and at that time, did not receive access to the learning intervention. Data from the primary outcome measures were examined in mixed model analyses. Results: Overall, the effect of the online learning intervention over time comparing the intervention group and the control group were positive. The intervention groups‘ scores were higher and the change over time results were statistically significant [T3 and T1 (t=3.78 p=<0.001) and T2 and T1 baseline (t=5.83 p=<0.001)]. Statistically significant improvements were also seen for delirium recognition when comparing T2 and T1 results (t=2.58 p=0.012) between the control and intervention group but not for changes in delirium recognition scores between the two groups from T3 and T1 (t=1.80 p=0.074). The majority of the participants rated the website highly on the visual, functional and content elements. Additionally, nearly 80% of the participants liked the overall website features and there were self-reported improvements in delirium knowledge and recognition by the registered nurses in the intervention group. Discussion: Findings from this study support the concept that online learning is an effective and satisfying method of information delivery. Embedded within a constructivist learning environment the site produced a high level of satisfaction and usability for the registered nurse end-users. Additionally, the results showed that the website significantly improved delirium knowledge & recognition scores and the improvement in delirium knowledge was retained at a two month follow-up. Given the strong effect of the intervention the online delirium intervention should be utilised as a way of providing information to registered nurses. It is envisaged that this knowledge would lead to improved recognition of delirium as well as improvement in patient outcomes however; translation of this knowledge attainment into clinical practice was outside the scope of this study. A critical next step is demonstrating the effect of the intervention in changing clinical behaviour, and improving patient health outcomes.

Attitudes and expectations of technologies to manage high risk wandering and elopement in persons with dementia : an Australian perspective

Wandering is aimless and repetitive locomotion that may expose persons with dementia (PWD) to elopement, getting lost and death. This study is an Australian replication of a US study. Cross-disciplinary consensus- based analysis was applied to data from five focus groups (N =47: cognitively intact LTC residents (5), carers of PWD (11), home care workers (13) allied health professionals and health-focused engineers (7) and RNs (11). Groups received briefing about wandering monitoring and elopement management systems. Consistent with US attitudes, participants in all groups agreed on what a wandering technology should do, how it should do it, and necessary technical specifications. Within each group participants raised the need for a continuum of care for PWD and the imperative for early recognition of potentially dangerous wandering and getting lost when they occur. Global Positioning System elopement management was the preferred option. Interestingly, the prospective value of GPS to recover a lost or eloped wanderer far outweighed privacy concerns, as in the US. A pervasive theme was that technologies need to augment, but cannot replace, attentive, compassionate caregiver presence. A significant theme raised only by Australian carers of PWD was the potential for development of implantable GPS technologies and the need for public debate about attendant ethical issues. Given that 60% or more of over 200,000 Australians and 4.5 million Americans with dementia will develop wandering, there is a pressing need to develop effective locator systems that may delay institutionalization, help allay carer concern and enhance PWD safety.

When does change begin following screening and brief intervention among depressed problem drinkers?

Brief interventions are effective for problem drinking and reductions are known to occur in association with screening and assessment. The present study sought to assess, among participants (N=202) in a clinical trial, how much change occurred between baseline assessment and a one-session brief intervention (S1), and the predictors of early change. The primary focus was on changes in the Beck Depression Inventory Fast Screen scores and alcohol consumption (standard drinks per week) prior to random allocation to nine further sessions addressing either depression, alcohol, or both problems. There were large and clinically significant reductions between baseline and S1, with the strongest predictors being baseline scores in the relevant domain and change in the other domain. Client engagement was also predictive of early depression changes. Monitoring progress in both domains from first contact, and provision of empathic care, followed by brief intervention appear to be useful for this high prevalence comorbidity.

Referral patterns and proximity to palliative care inpatient services by level of socio-economic disadvantage : a national study using spatial analysis

Background: A range of health outcomes at a population level are related to differences in levels of social disadvantage. Understanding the impact of any such differences in palliative care is important. The aim of this study was to assess, by level of socio-economic disadvantage, referral patterns to specialist palliative care and proximity to inpatient services. Methods: All inpatient and community palliative care services nationally were geocoded (using postcode) to one nationally standardised measure of socio-economic deprivation – Socio-Economic Index for Areas (SEIFA; 2006 census data). Referral to palliative care services and characteristics of referrals were described through data collected routinely at clinical encounters. Inpatient location was measured from each person’s home postcode, and stratified by socio-economic disadvantage. Results: This study covered July – December 2009 with data from 10,064 patients. People from the highest SEIFA group (least disadvantaged) were significantly less likely to be referred to a specialist palliative care service, likely to be referred closer to death and to have more episodes of inpatient care for longer time. Physical proximity of a person’s home to inpatient care showed a gradient with increasing distance by decreasing levels of socio-economic advantage. Conclusion: These data suggest that a simple relationship of low socioeconomic status and poor access to a referral-based specialty such as palliative care does not exist. Different patterns of referral and hence different patterns of care emerge.

Quality of life for older people in residential care is related to connectedness, willingness to enter care, and co-residents

Aim: To establish associations with quality of life (QOL) of older people in long-term residential care facilities in two New Zealand cities. Methods: The outcome measure of QOL was the Life Satisfaction Index. We used multiple linear regression to explore how broad categories of factors might contribute to QOL. Results: A total of 599 people (median age of 85 years; 74% women) participated. Response rates were 85% for facilities and 83% for residents. A resident's QOL was significantly related to the QOL of co-residents. QOL was higher for people who were more positive about entry to residential care, more physically able, and not depressed, and for those with more family and emotional support. Conclusion: Attending to the circumstances around entry to residential care may enhance QOL, as may promoting physical activity, treating depression and ensuring older people remain emotionally connected to their families. In choosing a facility, noting the QOL of co-residents is important.

A better future for young people leaving care

The Australian National Homelessness Research Agenda funded this study which explored post-care homelessness experiences of young people, asked them what they considered helpful, and identified practice and policy implications. Participants were 48 care leavers aged 19 to 23 years in Queensland and Victoria. Of these 17 young people were interviewed twice over a four month period. In addition focus groups were held with service providers and current postcare service arrangements in the two states mapped. The study found there is a need for policy and practice to more effectively orient towards a holistic and future oriented view of outcomes for young people transitioning from care.