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Background: High health literacy (HL) is important to optimise health outcomes, particularly for older people (who are substantial consumers of health services) and their adult caregivers. The aim of this systematic review was to evaluate measurement properties of HL instruments tested with these population groups., Materials and Methods: Six databases (MEDLINE (OVID); CINAHL; EMBASE (OVID); PsycInfo; Scopus; Cochrane Library) were searched for studies evaluating eight measurement properties of HL tools administered to older people or their caregivers. Only studies evaluating multi-domain self-report HL tools were included in analyses, using the COSMIN methodology., Results: From 4261 unique papers located, 11 met inclusion criteria; six reported measurement properties of three HL self-report tools administered to older people (HLQ, eHEALS, and HeLMS) so are reported in this review, none involved caregiver samples. The HLQ and HeLMS were rated "moderate," and eHEALS "low" for tool development. The HLQ, examined in four included studies, had the highest ratings and quality of evidence across the three measurement properties investigated in included papers., Conclusion: The HLQ was the most highly rated self-report HL tool of just three tested with older people. Further studies evaluating measurement properties of self-report HL tools used with older people and/or their caregivers are needed.Implications for rehabilitationHealth literacy is important to optimise health outcomes of interventions for older people and their adult caregivers.Few studies have evaluated measurement properties of self-report / multi-domain health literacy tools for this population.The Health Literacy Questionnaire (HLQ) had the highest ratings and quality of evidence across the three measurement properties investigated in included studies, and is recommended for use in rehabilitation settings.

Background: What it means to live with dementia is changing. Autonomy, independence and continued community involvement are now recognised goals. As a result, new initiatives are required to support people with dementia to sustain their quality of life, update community understanding and reflect resultant change in community attitudes. Measuring the impact of such initiatives can help determine the extent of their success, inform needs for further intervention and, ultimately, shape policy., Objective: To discover - or, if this could not be achieved, develop - a questionnaire measuring community attitudes towards people with dementia reflecting these newly recognised goals in terms of both content and expression., Methods: A four-stage approach was used in this research: a scoping review of the literature, questionnaire development and expert review, questionnaire piloting, including with people living with dementia and their families, and preliminary psychometric testing., Results: The review failed to retrieve a suitable existing questionnaire. A ten-item questionnaire, the Dementia Community Attitudes Questionnaire was developed, content validity was established by expert review and piloting led to refinements. Exploratory factor analysis ( N = 92) generated an interpretable three-factor solution. Cronbach's alpha coefficient for Factor 1, Engagement, was good (0.855); for Factor 2, Challenges, and Factor 3, Decision-Making, reliability was acceptable (0.785 and 0.709, respectively)., Conclusion: Supporting people with dementia to sustain their quality of life requires new initiatives and suitable measures to evaluate their impact. The Dementia Community Attitudes Questionnaire was developed with input from people with dementia, their families, and relevant experts. Items reflect current opportunities for people with dementia to retain their independence, autonomy and community engagement for as long as possible. Following further psychometric testing, this new questionnaire may be useful to evaluate such initiatives.

Objective: To determine the re-test reliability of the Health Literacy Questionnaire (HLQ) with carers of older adults discharged from hospital or attending the outpatient clinic., Methods: Carers completed the HLQ twice by telephone and rated the acceptability of completing the tool. Tool completion time was recorded. Correlations were calculated between the test occasions using intraclass correlation coefficients (ICC) and 95% confidence intervals., Results: Fifty-one carers of older patients participated. The HLQ showed good reliability (ICC = 0.75-0.90) for seven of the nine scales and moderate reliability (0.50-0.74) for the other two scales. Median completion time was 16.5 minutes (range 9-50), and acceptability was rated as 9.5/10., Conclusion: The HLQ is a reliable tool for use with carers of older adults attending hospital. However, the length of time for completion of the HLQ may limit its feasibility for use by hospital staff and carers, given the high stress and time pressures of acute care., (© 2021 AJA Inc.)

Background: There is little evidence that outlines how family carers understand the person with dementia's perspective, values and anticipated future needs. Whilst people with dementia should be consulted about their own quality of life and care values, carers - otherwise known as care partners - require such understandings to ensure that the support the person receives into the future upholds their quality of life and is consistent with what they desire., Aim: This research aimed to explore and describe family carers' experience of supporting the person with dementia to maintain their quality of life by understanding how carers developed an awareness and understanding of the person with dementia's expectations for the future and what they believed was important for the person to whom they provided care., Method: Using an application of the grounded theory method, data were collected from 21 carers during semi structured interviews and analysed using constant comparative analysis., Findings: Four categories emerged from the data: Knowing the person, Process of decision making, Maintaining normalcy and quality of life and Out of their control., Discussion: This study provides insights into how carers developed awareness of the expectations of people with dementia. Findings also illuminate carers' perspectives of the changing nature of decision making during the dementia trajectory., Conclusion: Understanding the perspective of the person living with dementia is essential to facilitate advocacy and support that is 'person centred' now and into the future. Assisting carers to incorporate this perspective into caring has the potential to be better facilitated by health professionals and merits further investigation.

Background: Falls remain an important problem for older people in hospital, particularly those with high falls risk. This mixed methods study investigated the association between multiple bed moves and falls during hospitalisation of older patients identified as a fall risk, as well as safety of ward environments, and staff person-centredness and level of inter-professional collaboration., Methods: Patients aged ≥70 years, admitted through the Emergency Department (ED) and identified at high fall risk, who were admitted to four target medical wards, were followed until discharge or transfer to a non-study ward. Hospital administrative data (falls, length of stay [LoS], and bed moves) were collected. Ward environmental safety audits were conducted on the four wards, and staff completed person-centredness of care, and interprofessional collaboration surveys. Staff focus groups and patient interviews provided additional qualitative data about bed moves., Results: From 486 ED tracked admissions, 397 patient records were included in comparisons between those who fell and those who did not [27 fallers/370 non-fallers (mean 84.8 years, SD 7.2; 57.4% female)]. During hospitalisation, patients experienced one to eight bed moves (mean 2.0, SD 1.2). After adjusting for LoS, the number of bed moves after the move to the initial admitting ward was significantly associated with experiencing a fall (OR 1.56, 95% CI 1.11-2.18). Ward environments had relatively few falls hazards identified, and staff surveys indicated components of person-centredness of care and interprofessional collaboration were rated as good overall, and comparable to other reported hospital data. Staff focus groups identified poor communication between discharging and admitting wards, and staff time pressures around bed moves as factors potentially increasing falls risk for involved patients. Patients reported bed moves increased their stress during an already challenging time., Conclusion: Patients who are at high risk for falls admitted to hospital have an increased risk of falling associated with every additional bed move. Strategies are needed to minimise bed moves for patients who are at high risk for falls., Competing Interests: The authors report no conflicts of interest in this work., (© 2019 Toye et al.)

Background: The ageing global population has seen increasing numbers of older people living with chronic health problems, declining function, and frailty. As older people seek to live out their years at home, family members, friends and neighbours (informal caregivers) are increasingly relied upon for support. Moreover, pressured health systems and shorter hospital length of stay mean that informal caregivers can find themselves supporting the older person who is still unwell after discharge. The Further Enabling Care at Home (FECH) program was developed as a nursing outreach intervention designed to systematically address support needs of family caregivers of older people after hospital discharge to sustain their home-based caregiving. The objective of this study was to explore the experiences of informal caregivers who participated in the FECH program after an older family member's discharge from hospital., Methods: The study employed a qualitative descriptive design. Caregivers of older people discharged home from a Medical Assessment Unit in an Australian hospital who were included in the program were interviewed to explore their experiences and perceptions of the FECH program. Data were audio-recorded, transcribed, and subjected to thematic analysis., Results: Twenty-one family caregivers (81% female, aged 25-89 years) participated in the interviews. Themes emerging were 'The experience of caregiving'; 'The experience of receiving FECH program support'; and 'Caregivers' suggestions for improvement'. Caregivers indicated that reflective discussions with the FECH nurse enabled them to recognise the complexity of the caregiving role and determine aspects where they needed support. Caregivers valued guidance from the FECH nurse in accessing information and resources, which helped them to feel more connected to support, more prepared to care for the older person and themselves, and more secure in the caregiving role., Conclusions: Caregivers' experiences indicated that the structured reflective FECH discussions prompted thought and provided guidance in navigating health and care systems. The FECH program appears to offer a means to address the practical, physical and psychosocial needs of informal caregivers as partners in person-centred health and social care., Trial Registration: ANZCTR Trial ID: ACTRN126140011746773 .

Individuals with low health literacy have less knowledge of their own health condition. Carers play a key role in older people's activities of daily living., Objective: to evaluate the performance of carers of older people using the S-TOFHLA (Short Test of Functional Health Literacy in Adults) and to identify caregiver characteristics associated with low functional health literacy., Methods: a cross-sectional study was conducted. The S-TOFHLA, a sociodemographic instrument, the Mini-Mental State Exam and the Patient Health Questionnaire-2 were applied to 80 carers of older patients routinely followed by doctors from the Primary Health Care Sector of the City of Botucatu, São Paulo. The multivariate analysis used an ordinal logistic regression model with test (S-TOFHLA) scores as the dependent variable. The level of statistical significance adopted was 0.05., Results: the individuals had a mean age of 54.6 (± 11.7); 27% of the carers evaluated had inadequate levels of health literacy (S-TOFHLA ≥54). A higher proportion of individuals with low education had inadequate or marginal health literacy (p<0.001)., Conclusion: nearly 1/3 of the carers had marginal or inadequate levels of health literacy. These results highlight the difficulties of many carers in understanding health information., Competing Interests: Disclosure: The authors report no conflicts of interest.

Background: A telephone intervention for caregivers of older people discharged from hospital was shown to improve preparedness to care, reduce caregiver strain and caregiver distress. No cost-effectiveness analysis has been published on this, or similar interventions. The study aims addressed here were to examine whether positive outcomes for caregivers resulting from the Further Enabling Care at Home (FECH) program changed the use and costs of health services by patients; and to assess cost-effectiveness., Methods: A single-blind randomised controlled trial compared FECH to usual care. FECH involved a specially trained nurse addressing support needs of caregivers of older patients discharged from hospital. A minimum clinically important difference in preparedness to care was defined as an increase in Preparedness for Caregiving scale score of ≥ two points from baseline. Designated data collection was at: Time 1, within four days of discharge; Time 2, 15-21 days post-discharge; and Time 3, six weeks post-discharge. A last observation carried forward approach to loss to follow-up was used, with a sensitivity analysis including only those who completed all time points. Patient use of hospital, emergency department (ED) and ambulance services were captured for 12 weeks post-discharge using administrative data. Costs included nurse time supporting caregivers, resources used by the nurse, and time taken training the nurse to deliver FECH. Cost-effectiveness was assessed using decision trees for preparedness for caregiving., Results: Sixty-two intervention dyads and 79 controls provided complete data. A significantly greater proportion of intervention group caregivers reported improved preparedness to care to Time 2 (36.4% v 20.9%, p = 0.029), though this was not sustained to Time 3. The intervention cost $AUD268.28 above usual care per caregiver. No significant differences were observed in health service use between groups. The incremental cost-effectiveness ratio for each additional caregiver reporting improved preparedness to care at Time 2 was $AUD1,730.84., Conclusions: To our knowledge this is the first work to calculate the cost-effectiveness of a telephone-delivered intervention designed to support caregivers of older people post-discharge, and will support decision-making regarding implementation. Further research should examine different settings, and assess impacts on health service use with larger samples and a longer follow-up., Trial Registration: Australian and New Zealand Clinical Trial Registry: ACTRN12614001174673 . Registered 07/11/2014.

Aim: We aimed to implement a systematic nurse-caregiver conversation, examining fidelity, dose and reach of implementation; how implementation strategies worked; and feasibility and mechanisms of the practice change., Background: Appropriate hospital care for people living with dementia may draw upon: information from the patient and family caregiver about the patient's perspective, preferences and usual support needs; nursing expertise; and opportunities the nurse has to share information with the care team. Within this context, planned nurse-caregiver communication merits further investigation., Methods: In Phase I, we established the ward staff's knowledge of dementia and Alzheimer's disease, prepared seven nurse change leaders, finalised the planned practice change and developed implementation plans. In Phase II, we prepared the ward staff during education sessions and leaders supported implementation. In Phase III, evaluations were informed by interviews with change leaders, follow-up measures of staff knowledge and a nurse focus group. Qualitative data were thematically analysed. Statistical analyses compared nurses' knowledge over time., Results: Planned practice change included nurses providing information packs to caregivers, then engaging in, and documenting, a systematic conversation. From 32 caregivers, 15 received information packs, five conversations were initiated, and one was completed. Knowledge of dementia and Alzheimer's disease improved significantly in change leaders (n = 7) and other nurses (n = 17). Three change leaders were interviewed, and six other nurses contributed focus group data. These leaders reported feeling motivated and suitably prepared. Both nurses and leaders recognised potential benefits from the planned conversation but viewed it as too time-consuming to be feasible., Conclusions: The communication initiative and implementation strategies require further tailoring to the clinical setting. A caregiver communication tool may be a helpful adjunct to the conversation. Implementation may be enhanced by more robust stakeholder engagement, change leader inclusion in the reference group and an overarching supportive framework within which change leaders can operate more effectively., Implications for Practice: Nurse-caregiver communication in this context requires inititatives tailored to the clinical setting with input from all stakeholders., (© 2019 John Wiley & Sons Ltd.)

There is lack of a suitable assessment tool that can be used routinely and systematically by hospital staff to address family caregivers' (FCs') support needs. This paper describes a novel approach to identifying and addressing FCs' needs following hospital discharge of the older person receiving care., Setting and Participants: FC recruitment occurred on the patient's discharge from a tertiary hospital in Western Australia; 64 completed the study; 80% were female; mean age 63.2 years., Intervention: The Further Enabling Care at Home (FECH) programme was delivered over the telephone by a specially trained nurse and included: support to facilitate understanding of the patient's discharge letter; caregiver support needs assessment and prioritisation of urgent needs; and collaborative guidance, from the nurse, regarding accessing supports., Results: Sixty-four FCs completed the FECH programme. The top three support needs identified by the FCs were: knowing what to expect in the future (52%), knowing who to contact if they were concerned (52%) and practical help in the home (36%). The telephone-based outreach service worked well and was convenient for the nurse and the FCs, and saved on transport, time and money. Most of the FCs appreciated the systematic approach to identify and articulate their needs and were satisfied with the support they received, mainly navigation through the systems, problem solving, self-care strategies, explanation of illness, symptoms and medication and access to after-hours services., Conclusions: In order to guide services which may consider adopting this systematic approach to supporting FCs and integrating it into their routine practice, this evaluation of the FECH programme has described the processes implemented and highlighted the factors that hindered or facilitated these processes to engage caregivers with appropriate services in a timely manner. Positive feedback indicated that the programme was a useful addition to hospital discharge planning., Trial Registration Number: ACTRN12614001174673; Results., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Effective pain management is unlikely to occur without consistent and timely assessments. To improve assessment and management of pain, ward-based pain resource nurses were introduced in 2007 to facilitate hospital-wide evidence-based practice changes using three key targets. One-year post implementation of this quality improvement project, promising results were revealed., Aims: The purpose of this study, 8 years post implementation, was to (a) evaluate sustained practice improvements in pain assessment and management, (b) assess current pain resource nurse knowledge and attitudes to pain, (c) explore characteristics of the pain resource nurse role, as well as (d) any perceived contextual changes regarding study findings., Methods: A mixed-methods approach was used to address study aims. Quantitative data were collected from documentation audits and a "Knowledge and Attitudes Survey Regarding Pain." Qualitative interviews explored the characteristics of the pain resource nurse role, and a focus group discussion explored the context of change., Results: Significant improvements were observed for the documentation of pain scores on admission and for each nursing shift. Survey results highlighted potential knowledge deficits in key practice areas, even though interview findings suggested that pain resource nurses provided a resource for peers, raised awareness of best practice, and imparted knowledge to other ward staff. An important facilitator for the pain resource nurse role was the ongoing collaboration and support from specific pain teams, and barriers to engage in the role were competing workload priorities, and limited awareness among other ward staff., Linking Evidence to Action: Implementing and sustaining evidence-based practice change in clinical practice is challenging. Ongoing evaluation is necessary for identifying the long-term implications of practice improvement interventions and issues that influence the adoption of evidence-based practice. Strategies to address barriers, and to increase awareness and engagement of the pain resource nurse role with wider collaboration require further investigation., (© 2018 Sigma Theta Tau International.)

Aims and Objectives: This study was positioned within a larger action research study relating to a peer-led Aboriginal home visiting parent support program in an urban Western Australian setting. The aims for this study component were to identify program elements, exploring participants' perceptions of the program's suitability, feasibility, acceptability and effectiveness to inform program model recommendations and add to the body of knowledge on effective Aboriginal peer-led program models., Background: The ability of Aboriginal parents to develop positive family environments is crucial, with parent support needing to be reflexive to local needs and sociocultural influences. Culturally appropriate service provision needs meaningful and acceptable strategies., Design: This study was situated within a critical paradigm supporting Participatory Action Research methodology, using Action Learning Sets as the participant engagement and data collection setting., Methods: Within ten Action Learning Sets, focus group interviews were carried out with Aboriginal peer support workers, a non-Aboriginal parent support worker, an Aboriginal program coordinator, an Aboriginal education support officer and non-Aboriginal program managers (n = 8), and individual interviews with parents (n = 2) and community agencies (n = 4). Data were analysed using thematic analysis., Results: Five themes were derived from peer support worker and community agency cohorts: peer support worker home visiting skills; responding to impacts of social determinants of health; client support and engagement; interagency collaboration; and issues addressing program sustainability. Parent responses augmented these themes., Conclusions: Participants identified five key elements relating to peer-led home visiting support for Aboriginal parents. These are uniquely placed to inform ongoing program development as there is little additional evidence in wider national and international contexts., Relevance to Clinical Practice: Engagement with communities and peer support workers to develop culturally relevant partnerships with Aboriginal families is integral to contemporary child health practice. Ongoing nurse support is needed for peer support worker role development. Indigenous Australian peoples are people who identify as Aboriginal or Torres Strait Islander. Respectfully, throughout this paper, they will be described as Aboriginal., (© 2017 John Wiley & Sons Ltd.)

Background: Participatory action research (PAR) is a credible, culturally appropriate methodology that can be used to effect collaborative change within vulnerable populations., Aim/objective: This PAR study was undertaken in a Western Australian metropolitan setting to develop and evaluate the suitability, feasibility and effectiveness of an Aboriginal peer-led home visiting programme. A secondary aim, addressed in this paper, was to explore and describe research methodology used for the study and provide recommendations for its implementation in other similar situations., Methods: PAR using action learning sets was employed to develop the parent support programme and data addressing the secondary, methodological aim were collected through focus groups using semi-structured and unstructured interview schedules. Findings were addressed throughout the action research process to enhance the research process., Results: The themes that emerged from the data and addressed the methodological aim were the need for safe communication processes; supportive engagement processes and supportive organisational processes., Conclusions: Aboriginal peer support workers (PSWs) and community support agencies identified three important elements central to their capacity to engage and work within the PAR methodology. This research has provided innovative data, highlighting processes and recommendations for child health nurses to engage with the PSWs, parents and community agencies to explore culturally acceptable elements for an empowering methodology for peer-led home visiting support. There is potential for this nursing research to credibly inform policy development for Aboriginal child and family health service delivery, in addition to other vulnerable population groups. Child health nurses/researchers can use these new understandings to work in partnership with Aboriginal communities and families to develop empowering and culturally acceptable strategies for developing Aboriginal parent support for the early years. Impact Statement Child health nurses and Aboriginal communities can collaborate through participatory action research to develop peer-led support for the early years. Indigenous Australian peoples are people who identify as Aboriginal or Torres Strait Islander. Respectfully, throughout this paper, they will be described as Aboriginal.

The objective of this study was to assess whether purchasing a personal alarm service makes a difference in a range of health outcomes for community dwelling older adults. The prospective cohort study involved 295 individuals for whom data on emergencies experienced at home were collected over a period of 12 months. Purchasers of alarms, compared to nonpurchasers, benefitted in terms of feeling more safe and secure and being more active around their home. Outcomes experienced after an emergency were similar for both groups with no differences found in terms of time spent on floor, or hospitalizations.

Current research identifies advanced dementia to be the terminal phase of this progressive and incurable condition. However, there has been relatively little investigation into how family members of people with advanced dementia understand their relative's condition. In this article, we report on semi-structured interviews with 10 family members of people with advanced dementia, in a residential aged care facility. Using a qualitative, descriptive design, we explored family members' understandings of dementia, whether they were aware that it was a terminal condition, and the ways they developed their understandings. Findings revealed that the majority of family members could not recognize the terminal nature of dementia. Relying on predominantly lay understandings, they had little access to formal information and most failed to conceptualize a connection between dementia and death. Moreover, family members engaged in limited dialogue with aged care staff about such issues, despite their relatives being in an advanced stage of the disease. Findings from our study suggest that how family members understand their relative's condition requires greater attention. The development of staff/family partnerships that promote shared communication about dementia and dying may enhance family members' understandings of the dementia trajectory and the types of decisions they may be faced with during the more advanced stages of the disease.

This study piloted a hospital-based delirium and falls education program to investigate the impacts on staff knowledge and practice plus patient falls. On a medical ward, staff knowledge was compared before and after education sessions. Other data - collected a day before and after program implementation - addressed documentation of patients' delirium and evidence of compliance with falls risk minimization protocols. These data, and numbers of patient falls, were compared before and after program implementation. Almost all ward staff members participated in education sessions (7 doctors, 7 allied health practitioners, and 45 nurses) and knowledge was significantly improved in the 22 who completed surveys both before and after session attendance. Patients assessed as having delirium (5 before implementation, 4 afterwards) were all documented as either confused or delirious. Small changes eventuated in adherence with falls risk management protocols for confused patients and the number of falls decreased. The program merits a stronger emphasis on staff activities relating to the detection, documentation, and management of delirium to inter-professional roles and communication. Evidence of practice enhancement from program implementation should precede rigorous testing of impacts upon falls., (© 2016 John Wiley & Sons Australia, Ltd.)

Background: Family carers of people living and dying with dementia experience grief. The prevalence, predictors and associated factors of grief in this population have been identified, and psychosocial interventions to decrease grief symptoms have been implemented. However, the effect of psychosocial interventions on family carers' grief, loss or bereavement has not been examined., Objective: To synthesize the existing evidence regarding the impact of psychosocial interventions to assist adjustment to grief, pre- and post-bereavement, for family carers of people with dementia., Inclusion Criteria Types of Participants: Family carers of older persons with dementia (>65 years)., Types of Interventions: Psychosocial interventions in health and social care facilities, and community settings designed to assist family carers adjust to grief during the dementia trajectory and/or following death., Comparisons: No treatment, standard care or treatment as usual, or an alternative intervention., Types of Studies: Experimental and epidemiological study designs., Outcomes: Grief in family carers including anticipatory, complicated and prolonged grief disorder measured with validated instruments., Search Strategy: A three-step strategy sought to identify both published and unpublished studies from 1995., Methodological Quality: Assessed by two independent reviewers using standardized critical appraisal tools from the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI)., Data Extraction: The standardized data extraction tool from JBI-MAStARI was used by two reviewers independently., Data Synthesis: Statistical pooling of results was not possible due to the heterogeneity of the interventions and the outcome measures., Results: Data were extracted from three studies. Study designs were a randomized controlled trial; a pre-test, multiple post-test quasi-experimental; and a single group, repeated measures. The interventions were multi-component, had durations of nine to 26 weeks and were delivered while care recipients were alive. All studies were undertaken in the United States. There were 327 family carers, of which 197 received a psychosocial intervention. Family carers were predominantly female (84.7%), Caucasian (73.4%) and caring for their spouse (44.3%). All care recipients had dementia; 68.5% had Alzheimer's disease. Two studies measured anticipatory grief, and the third study reported normal and complicated grief.Moderate benefits to anticipatory grief were evident upon completion of the "Easing the Way" intervention (effect size -0.43, P = 0.03). After controlling for research design and control variables, for every hour increase in the interventions focusing on family carers' cognitive skills, there were associated decreases in carers' normal grief (parameter estimate [PE] = -0.81, P = 0.02) and complicated grief (PE = -0.87, P = 0.03). For every hour increase in the interventions focusing on carer behavior, there was an associated decrease in carers' complicated grief (PE = -1.32, P = 0.04). For every hour increase in the interventions focusing on care recipient behavior, there was an associated decrease in carers' complicated grief (PE = -2.91, P = 0.04)., Conclusion: There is little evidence upon which to base practice with regard to interventions to reduce any aspects of grief. Findings suggest that different pre-death interventions might be warranted depending upon a family carer's unique clinical presentation and combination of risk factors.Cognitive skills training provided while the care recipient is alive may positively impact normal and complicated grief following the death of the care recipient. When the cognitive skills training is provided in conjunction with behaviorally oriented interventions that improve the wellbeing of the carer and care recipient, carers' complicated grief symptoms may be reduced.

Background: Hospital discharge of older people receiving care at home offers a salient opportunity to identify and address their family caregivers' self-identified support needs., Objectives: This study tested the hypothesis that the extent to which family caregivers of older people discharged home from hospital felt prepared to provide care at home would be positively influenced by their inclusion in the new Further Enabling Care at Home program., Design: This single-blind randomised controlled trial compared outcomes from usual care alone with those from usual care plus the new program. The program, delivered by a specially trained nurse over the telephone, included: support to facilitate understanding of the patient's discharge letter; caregiver support needs assessment; caregiver prioritisation of urgent needs; and collaborative guidance, from the nurse, regarding accessing supports., Setting and Participants: Dyads were recruited from the medical assessment unit of a Western Australian metropolitan public hospital. Each dyad comprised a patient aged 70 years or older plus an English speaking family caregiver., Methods: The primary outcome was the caregiver's self-reported preparedness to provide care for the patient. Data collection time points were designated as: Time 1, within four days of discharge; Time 2, 15-21days after discharge; Time 3, six weeks after discharge. Other measures included caregivers' ratings of: their health, patients' symptoms and independence, caregiver strain, family well-being, caregiver stress, and positive appraisals of caregiving. Data were collected by telephone., Results: Complete data sets were obtained from 62 intervention group caregivers and 79 controls. Groups were equivalent at baseline. Needs prioritised most often by caregivers were: to know whom to contact and what to expect in the future and to access practical help at home. Support guidance included how to: access help, information, and resources; develop crisis plans; obtain referrals and services; and organise legal requirements. Compared to controls, preparedness to care improved in the intervention group from Time 1 to Time 2 (effect size=0.52; p=0.006) and from Time 1 to Time 3 (effect size=0.43; p=0.019). These improvements corresponded to a change of approximately 2 points on the Preparedness for Caregiving instrument. Small but significant positive impacts were also observed in other outcomes, including caregiver strain., Conclusions: These unequivocal findings provide a basis for considering the Furthering Enabling Care at Home program's implementation in this and other similar settings. Further testing is required to determine the generalisability of results., (Copyright © 2016 Elsevier Ltd. All rights reserved.)

Background/objectives: To describe how people experiencing dementia define quality of life and how this may be supported., Design: Qualitative descriptive component of mixed methods cross-sectional study., Setting: Western Canadian community (4-h weekly care minimum), supportive housing (24-h support/supervision), personal care homes (24-h nursing)., Participants: One hundred and thirty-six persons aged 65+ experiencing dementia., Measurements: Semi-structured interview questions. Rating of meeting life's goals., Results: Participants characterised quality of life as: freedom, independence, having basic needs met, physical health, engagement in meaningful activities and tranquility. A need for self-determination/choice was evidenced across all domains. Increased access to skilled nursing care, support for meaningful engagement with family and meeting life's goals were endorsed as adding most to quality of life; 43% reported meeting all life's major goals., Conclusion: People experiencing dementia may have better quality of life when choice/self-determination is supported. Enhancements in care environment, independence, engagement and meeting of life's goals merit urgent attention., (© The Author(s) 2015.)

Background: Dementia is a significant issue globally, including in Thailand, and exercise is known to have health benefits for people living with dementia. However, little is known about exercise acceptable to, and feasible for, this population group in low-to-middle income countries although, more broadly, it is recognised that health-related behaviours are influenced by the perceptions of the individual, which exist within a cultural context., Objectives: To explore and describe perceptions of appropriate exercise for people living with dementia in Bangkok, Thailand., Design: Qualitative exploratory descriptive., Setting: Bangkok, Thailand., Participants: Nine professionals - experts in exercise, dementia care and relevant policy development - and nine dyads of people with dementia and their family caregivers all recruited using purposive sampling., Methods: Semi-structured interviews subjected to thematic analysis., Results: Three themes emerged: how exercise was defined, perceived benefits of exercise and how exercise should be implemented. Professionals recognised three exercise elements: aerobic exercise plus balance and strength training. Dyads recognised home-based activities (e.g., housework) and walking. Both groups recognised benefits of exercise in maintaining health and function and improving mood and sleep. Only health professionals identified falls risk reduction. There was limited appreciation of benefits for caregivers by maintaining function in care recipients. Professionals deemed that exercise should address all three elements, using easily accessible low-cost resources. The need for safety was emphasised, and there was agreement that in-home exercise was appropriate. Family/cultural values were evident that could present barriers to exercise implementation., Conclusion: Changing health-related behaviours requires an understanding of individual perspectives, which exist within a cultural context. This study has illuminated the Thai context and has implications beyond this. Findings emphasise a need for potential benefits to be sufficiently understood by family caregivers to overcome any culturally based reluctance to promote exercise in older people., Implications for Practice: Nurses have a key role in supporting care givers of older persons with dementia supervise home based exercise. Nurses need to develop knowledge of aerobic exercise to teach caregivers and the older person with dementia. Muscle strength and aerobic exercise assists in the older person's ability to undertake ADL., (© 2015 John Wiley & Sons Ltd.)

Objectives: To compare the psychometric performance of the Dementia Knowledge Assessment Scale (DKAS) and the Alzheimer's Disease Knowledge Scale (ADKS) when administered to a large international cohort before and after online dementia education., Design: Comparative psychometric analysis with pre- and posteducation scale responses., Setting: The setting for this research encompassed 7,909 individuals from 124 countries who completed the 9-week Understanding Dementia Massive Open Online Course (MOOC)., Participants: Volunteer respondents who completed the DKAS and ADKS before (n = 3,649) and after (n = 878) completion of the Understanding Dementia MOOC., Measurements: Assessment and comparison of the DKAS and ADKS included evaluation of scale development procedures, interscale correlations, response distribution, internal consistency, and construct validity., Results: The DKAS had superior internal consistency, wider response distribution with less ceiling effect, and better discrimination between pre- and posteducation scores and occupational cohorts than the ADKS., Conclusion: The 27-item DKAS is a reliable and preliminarily valid measure of dementia knowledge that is psychometrically and conceptually sound, overcomes limitations of existing instruments, and can be administered to diverse cohorts to measure baseline understanding and knowledge change., (© 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.)

Review Objective: The objective is to examine the existing evidence regarding the effectiveness of psychosocial interventions to assist grief pre- and post-bereavement for family carers of people with dementia residing in the community or in a health or social care facility., Review Question: What psychosocial interventions for family carers of people with dementia are most effective in reducing: (1) anticipatory grief, (2) post-death grief (bereavement), and (3) complicated grief?

Purpose: To explore the self-perceived role of the Aboriginal peer support worker working with familieswith young children. This study was a component of a larger participatory action research study under-taken in a Western Australian metropolitan setting to develop and evaluate the suitability, feasibility andeffectiveness of an Aboriginal peer-led home visiting program., Methods: Focus group interviews were carried out with peer support workers using unstructured andsemi-structured interviews within Action Learning Sets. Data were analysed using thematic analysis.Results: The overarching theme on the self-perceived role of the Aboriginal peer support worker wasGiving Parent Support, with subsidiary themes relating to development and ongoing sustainability of thesupport., Discussion: The peer support workers viewed their role as providing parent support through enablingstrategies which developed client acceptance and trust, delivered culturally relevant support, advocatedfor families, developed therapeutic engagement and communication strategies, and created safe homevisiting practices. They recognised the importance of linking families with community support such ascommunity child health nurses which was important for improving long term physical and psychosocialhealth outcomes for children., Conclusion: Aboriginal Peer Support Workers identified their emerging integral role in the developmentof this unique culturally acceptable home visitingsupport for Aboriginal parents. Innovative approachestowards client engagement demonstrated their value in developing creative ways of working in part-nership with families, community support services and child health nurses across a range of challengingpsychosocial environments.

This action research study was conducted to trial a strategy intended to support a consistent, high-quality, palliative approach for people with dementia drawing close to death-the implementation of a community of practice. Professionals from community/residential care and hospitals formed this community of practice, which took on the role of an action research group. The group was supported to identify and address practice problems. Four action plans were implemented; outcomes from two are reported. When actioning the plan 'providing education and information for the staff', the staff's ratings of sessions and resources were positive but impacts upon knowledge, views, or confidence were small. When actioning 'supporting families', families providing care in non-hospital settings received information about severe dementia from suitably prepared staff, plus contact details to access support. Family feedback was primarily positive. Reference to additional practice change frameworks and inclusion of specialist palliative care professionals are recommendations for future initiatives; also focusing on targeted, achievable goals over longer timeframes.

Objectives: To develop a reliable and valid dementia knowledge scale to address limitations of existing measures, support knowledge evaluation in diverse populations, and inform educational intervention development., Design: A five-stage, systematic scale development process was employed to construct and assess the psychometric properties of the Dementia Knowledge Assessment Scale (DKAS)., Setting: Data for the study were generated in an online environment and during clinical dementia care placements from Australian (n = 1,321) and international respondents (n = 446)., Participants: Volunteers from a dementia-related massive open online course (n = 1,651), medical students on clinical placement in a residential aged care facility (n = 40), and members of the Australian health workforce (n = 76)., Measurements: Psychometric properties of the DKAS were established using a literature review to assess the veracity of scale items, respondent feedback during pilot testing, a Delphi study with dementia experts, construction and review by an expert panel, evaluation of item difficulty, item-total and interitem correlations. Principal components analysis (PCA) was also performed along with measures of test-retest reliability, internal consistency, construct validity, and concurrent validity., Results: The pilot DKAS was reduced from 40 to 27 items during analysis. PCA identified four distinct and interpretable factors. The revised DKAS displays high levels of test-retest reliability; internal consistency; and preliminary construct, concurrent, and factorial validity., Conclusion: The 27-item DKAS is reliable and shows preliminary validity for the assessment of knowledge deficiencies and change in those who provide care and treatment for people with dementia., (© 2015, Copyright the Authors Journal compilation © 2015, The American Geriatrics Society.)

Background: Personal alarms support independent living and have the potential to reduce serious consequences after a fall or during a medical emergency. While some Australian states have government funded personal alarm programs, others do not; but user-pays services are available. Although several studies have examined the profiles of alarm users, little is known about the risk profile of non-users. Specifically, whether there are "at risk" individuals who are unable, or choose not to purchase a service, who experience a home-based emergency in which an alarm could have mitigated an adverse outcome. This study aimed to describe the 'risk profile' of purchasers and non-purchasers of alarms; explore the reasons behind the decision to purchase or not to purchase and identify how often emergency assistance was needed and why., Methods: Purchasers and non-purchasers were followed for one year in this prospective cohort study. Demographic, decision-making and risk factor data were collected at an initial face-to-face interview, while information about emergencies was collected by monthly calls., Results: One hundred and fifty-seven purchasers and sixty-five non-purchasers completed the study. The risk profiles between the groups were similar in terms of gender, living arrangements, fall history and medical conditions. Purchasers (Mean = 82.6 years) were significantly older than non-purchasers (Mean = 79.3 years), (t(220) = -3.38, p = 0.000) and more functionally dependent on the IADL (z = -2.57, p = 0.010) and ADL (z = -2.45 p = 0.014) function scores. Non-purchasers (Mean = 8.04, SD = 3.57) were more socially isolated with significantly fewer family networks than purchasers (Mean = 9.46, SD = 3.25) (t(220) = -2.86, p = 0.005). Both groups experienced similarly high numbers of emergencies, 38.2 % of purchasers and 41.5 % of non-purchasers had at least one emergency where an alarm could have assisted. Main reasons for non-purchase were: cost (77 %), limited alarm range (51 %), no need (39 %) and lack of suitable contacts (30 %)., Conclusion: There are older individuals who are at high risk of an emergency who are choosing, often for financial and lack of family support reasons, not to purchase a personal alarm service. Greater availability of government funded subsidy schemes would enable these individuals to access a service. Increasing the range over which alarms work could increase their appeal to a broader range of older persons living in the community. Future research should consider how strategies that improve social isolation from family and challenge clients' beliefs about their own health and independence can support increased access to personal alarm services.

Purpose: To identify both meanings and perceptions of delivery of end-of-life (EoL) care for the person experiencing dementia., Design/methods: As part of a larger cross-sectional mixed methods study examining quality of life in dementia, perspectives of EoL care were sought from 136 seniors using open-ended questions administered at interview., Results: Seniors living in various settings identified obligatory requisites of care as time when the finality of death needed to be accepted, comfort was prioritized, family presence was valued, appearance remained important, and solitude or time "to be with God" was stressed. Skilled nursing care, honesty, and engaged family were also necessary., Implications: Understanding EoL preferences of those with dementia is critical for advocacy and service delivery., (© The Author(s) 2014.)

Background: Presentations to hospital of older people receiving family care at home incur substantial costs for patients, families, and the health care system, yet there can be positive carer outcomes when systematically assessing/addressing their support needs, and reductions in older people's returns to hospital attributed to appropriate discharge planning. This study will trial the Further Enabling Care at Home program, a 2-week telephone outreach initiative for family carers of older people returning home from hospital. Hypotheses are that the program will (a) better prepare families to sustain their caregiving role and (b) reduce patients' re-presentations/readmissions to hospital, and/or their length of stay; also that reduced health system costs attributable to the program will outweigh costs of its implementation., Methods/design: In this randomised controlled trial, family carers of older patients aged 70+ discharged from a Medical Assessment Unit in a Western Australian tertiary hospital, plus the patients themselves, will be recruited at discharge (N = 180 dyads). Carers will be randomly assigned (block allocation, assessors blinded) to receive usual care (control) or the new program (intervention). The primary outcome is the carer's self-reported preparedness for caregiving (Preparedness for Caregiving Scale administered within 4 days of discharge, 2-3 weeks post-discharge, 6 weeks post-discharge). To detect a clinically meaningful change of two points with 80 % power, 126 carers need to complete the study. Patients' returns to hospital and subsequent length of stay will be ascertained for a minimum of 3 months after the index admission. Regression analyses will be used to determine differences in carer and patient outcomes over time associated with the group (intervention or control). Data will be analysed using an Intention to Treat approach. A qualitative exploration will examine patients' and their family carers' experiences of the new program (interviews) and explore the hospital staff's perceptions (focus groups). Process evaluation will identify barriers to, and facilitators of, program implementation. A comprehensive economic evaluation will determine cost consequences., Discussion: This study investigates a novel approach to identifying and addressing family carers' needs following discharge from hospital of the older person receiving care. If successful, the program has potential to be incorporated into routine post-discharge support., Trial Registration: Australian and New Zealand Clinical Trial Registry: ACTRN12614001174673 .

Family carers of people with dementia may take on this role without understanding how it will evolve or how to obtain support. Hospitalisation of the person with dementia can not only compound carers' concerns, but also provides an opportunity for their needs to be addressed. This project involved preparing hospital based nurses, so they could initiate a dialogue with family carers of patients diagnosed with dementia, developing a protocol to guide the nurses as they provided carers with a dementia information booklet, implementing this protocol during a 12-week trial period, and obtaining feedback from the nurses using a questionnaire. At least 21 booklets were distributed; 16 nurses provided feedback. Nurses viewed the practice change positively. Recommendations are to engage ward based champions to embed this strategy into nursing practice, keep the staff informed, and ensure that the booklet is kept in a location visible to the staff., (© The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.)

Aim: This study aimed to obtain perspectives from key stakeholders to inform the development of Australian national guidelines for a palliative approach to aged care in the community setting., Methods: A descriptive, exploratory qualitative design was used. Sampling was purposive. Data were collected during audiotaped, semistructured, individual and focus group interviews that addressed the need for the guidelines and aimed to identify practice areas for inclusion. Thematic analysis was undertaken., Results: Interviews were conducted across Australia and included 172 participants: health-care providers, consumers, volunteers and researchers/educators. Themes emerging from the data were: Provision of a Palliative Approach in Community Aged Care, Carer Support, Advance Care Planning, Physical and Psychological Symptom Assessment and Management, Psychosocial Support, Spiritual Support, Issues for Aboriginal or Torres Strait Islander People, Older People from Diverse Cultural and Language Groups, and Clients with Special Needs., Conclusion: Findings underpinned development of new guideline documents., (© 2013 ACOTA.)

Background: Escalating numbers of people are experiencing dementia in many countries. With increasing consumer needs, there is anticipated growth in the numbers of people providing diagnostic evaluations, treatments, and care. Ensuring a consistent and contemporary understanding of dementia across all of these groups has become a critical issue. This study aimed to reach consensus among dementia experts from English speaking countries regarding essential and contemporary knowledge about dementia., Methods: An online Delphi study was conducted to examine expert opinion concerning dementia knowledge with three rounds of data collection. A sample of dementia experts was selected by a panel of Australian experts, including a geriatrician and three professors of aged care. Purposive selection was initially undertaken with the sample expanded through snowballing. Dementia experts (N = 19) included geriatricians, psychologists, psychiatrists, neuroscientists, dementia advocates, and nurse academics from the United Kingdom, United States, and Australia. In the first round, these participants provided open-ended responses to questions determining what comprised essential knowledge about dementia. In the second round, responses were summarised into 66 discrete statements that participants rated on the basis of importance. In the third round, a rank-ordered list of the 66 statements and a group median were provided and participants rated the statements again. The degree of consensus regarding importance ratings was determined by assessing median, interquartile range, and proportion of experts scoring above predetermined thresholds. Correlation scores were calculated for each statement after the final round to identify changes in statement scores., Results: The Delphi experts identified 36 statements about dementia that they considered essential to understanding the condition. Statements about care for a person experiencing dementia and their care giver represented the largest response category. Other statements, for which full or very high consensus was reached, related to dementia characteristics, symptoms and progression, diagnosis and assessment, and treatment and prevention., Conclusions: These results summarise knowledge of dementia that is considered essential across expert representatives of key stakeholder groups from three countries. This information has implications for the delivery of care to people with the condition and the development of dementia education programs.

Pain is common in residential aged care facilities (RACFs). In 2005, the Australian Pain Society developed 27 recommendations for good practice in the identification, assessment, and management of pain in these settings. This study aimed to address implementation of the standards and evaluate outcomes. Five facilities in Australia participated in a comprehensive evaluation of RACF pain practice and outcomes. Pre-existing pain management practices were compared with the 27 recommendations, before an evidence-based pain management program was introduced that included training and education for staff and revised in-house pain-management procedures. Post-implementation audits evaluated the program's success. Aged care staff teams also were assessed on their reports of self-efficacy in pain management. The results show that before the implementation program, the RACFs demonstrated full compliance on 6 to 12 standards. By the project's completion, RACFs demonstrated full compliance with 10 to 23 standards and major improvements toward compliance in the remaining standards. After implementation, the staff also reported better understanding of the standards (p < .001) or of facility pain management guidelines (p < .001), increased confidence in therapies for pain management (p < .001), and increased confidence in their training to assess pain (p < .001) and recognize pain in residents with dementia who are nonverbal (p = .003). The results show that improved evidence-based practice in RACFs can be achieved with appropriate training and education. Investing resources in the aged care workforce via this implementation program has shown improvements in staff self-efficacy and practice., (Copyright © 2014 American Society for Pain Management Nursing. Published by Elsevier Inc. All rights reserved.)

The number of people with dementia is increasing rapidly worldwide. Commensurate with population ageing, the use of nursing homes in Australia (known as residential aged care facilities) for individuals with dementia is growing. As a terminal condition, dementia is best managed by instituting a palliative approach to care. A good knowledge of dementia, including its progression and management, among staff and families of people living with dementia is essential for clear decision making and the provision of appropriate care. Yet there is limited information regarding relative levels of dementia knowledge. This paper reports the results of a study that assessed dementia knowledge among these two cohorts using the Dementia Knowledge Assessment Tool; the study surveyed 279 staff members and 164 family members of residents with dementia. Dementia knowledge deficits were evident in both cohorts across a range of areas. It is critical that dementia knowledge deficits are identified and addressed in order to support evidence-based dementia care.

Background: Delirium is common in older patients. Little is known of support needs of families of older hospital patients with delirium., Aims and Objectives: To inform nursing practice, we sought to describe families' experiences, understanding of delirium and delirium care, and support needs., Design: Descriptive mixed methods., Methods: Review of questionnaire items used with families of people with terminal delirium informed development of a new questionnaire to evaluate the support needs in our study population. In a tertiary hospital delirium unit, we recruited 17 family carers of older patients with (non-terminal) delirium to respond to this questionnaire. Twelve participants (11 female) also took part in interviews addressing the study's aims. Descriptive statistics were calculated and thematic analysis was undertaken., Results: From the survey, key family issues included distress about the patient's condition, worries about future care, and a need for more information about how the patient might feel and how families could support the patient. Themes from interviews included The admission experience, Worries and concerns, Feeling supported, and The discharge experience. Limited understanding of delirium underpinned all themes. Families experienced shock and sadness at the change in the patient; they were reassured by the specialist care but needed more information about delirium, its effects and outcomes, and how they could help with care. Meeting long-term postdischarge needs was a key concern., Conclusions: In this study, families with a hospitalised older relative who had delirium described a distressing experience and needs for informational support. Further research is needed outside of delirium-specific units and in samples including a greater proportion of male relatives., Implications for Practice: Nurses should work within the interdisciplinary team to ensure a planned, sensitive and timely approach to informing the patient's family about delirium and its implications for their relative, recognising the family carer's role and likely distress., (© 2013 Blackwell Publishing Ltd.)

Care for the person with dementia requires understanding of the person's perspective and preferences, integrated with knowledge of dementia's trajectory and appropriate care. Version One of the Dementia Knowledge Assessment Tool addressed such knowledge in care workers; Version Two is for families as well as staff. Content validity was established during development. Revisions addressed clarity, time for completion, and reliability. When 671 staff completed Version One before an education intervention, internal consistency reliability estimates exceeded 0.70. Validity was supported by higher scores in professional versus nonprofessional staff and following the education. Version Two was used with 34 family carers and 70 staff members. Internal consistency reliability (Cronbach's alpha coefficient) was promising (0.79, both groups). Completion was within 15 minutes. Median correct responses (from 21) were 14 for families (range 4-20) and 16 for the staff (range 3-21). Eighteen staff members (26%) and two family carers (6%) reported substantive dementia education. Inclusion of the person with dementia in care planning is often limited because of a late diagnosis and the progressive impacts of the condition. Establishing a shared staff-family understanding of the dementia trajectory and care strategies likely to be helpful is therefore critical to embarking upon the development and implementation of collaborative long term and end-of-life care plans. Version Two can help establish needs for, and outcomes of, education programs and informational resources in a way that is feasible, minimises burden, and facilitates comparisons across family and staff carer groups.

Aims and Objectives: To explore the perceptions of older patients who re-presented to hospital within 28 days of discharge from an acute medical unit (AMU), their family caregivers and appropriately experienced health professionals., Background: Hospitals are increasingly using AMUs to provide rapid assessment and treatment for medical patients. Evidence of efficacy is building, however in-depth exploration of the experiences of older patients who re-present to hospital soon after discharge from an AMU, and those who care for them, appears to be lacking., Design: A qualitative, descriptive design was used., Methods: In 2007, our team purposively sampled older patients who re-presented to hospital within 28 days of discharge from an AMU (n = 12), family caregivers (n = 15), and health professionals (n = 35). Data were collected using semi-structured interviews and subjected to thematic content analysis., Results: Four themes emerged: the health trajectory, communication challenges, discharge readiness and the decision to return. Re-presentation to hospital was seen as part of a declining health trajectory. The AMU was viewed as treating acute illness well, however patients and family caregivers left hospital with limited understanding of underlying health problems and, therefore, ill-prepared for future health crises., Conclusion: There are clear benefits for older patients from AMUs, which expedite treatment for acute health crises. However, AMU discharge planning needs to consider patients' overall health status and likely future needs to optimise outcomes. Such a requirement is problematic in the context of acute time pressures., Relevance to Clinical Practice: To ensure prompt and expert attention to key aspects of discharge planning for older people leaving AMUs, there is a role for in-depth clinical expertise in the care of older people facing deteriorating life-limiting conditions. Therefore, a leadership role for nurses with geriatric and palliative care expertise, alongside medical and allied health professionals, merits attention in this context., (© 2013 Blackwell Publishing Ltd.)

This action research project explored the feasibility and effect of implementing a hospital-wide coordinated approach to improve the management of pain. The project used a previously developed model to introduce three evidence-based changes in pain management. Part of this model included the introduction of 30 pain resource nurses (PRNs) to act as clinical champions for pain at a local level. Both quantitative and qualitative measures were used to assess the feasibility and effect of the changes introduced. Quantitative data were gathered through a hospital-wide document review and assessment of the knowledge and attitude of the PRNs at two time points: time 1 before the introduction of the PRNs and time 2 near completion of the project (11 months later). A statistically significant improvement in the documentation of pain scores on admission and each nursing shift was apparent. However, no difference was found in the percentage of patients who had been prescribed opioids for regular pain relief that had also been prescribed and dispensed a laxative/aperient. Neither were any statistically significant decreases in patient pain scores observed. An assessment of the knowledge and attitudes of the PRNs showed an improvement from time 1 to time 2 that was statistically significant. The qualitative data revealed that despite the barriers encountered, the role was satisfying for the PRNs and valued by other hospital staff. Overall, the results revealed that the new model of change incorporating PRNs was a useful and effective method for introducing and sustaining evidence-based organizational change., (Copyright © 2012 American Society for Pain Management Nursing. Published by Elsevier Inc. All rights reserved.)

Background: Typically, dementia involves progressive cognitive and functional deterioration, leading to death. A palliative approach recognizes the inevitable health decline, focusing on quality of life. The approach is holistic, proactive, supports the client and the family, and can be provided by the client's usual care team.In the last months of life, distressing symptoms, support needs, and care transitions may escalate. This project trialed a strategy intended to support a consistent, high quality, palliative approach for people with dementia drawing close to death. The strategy was to implement two communities of practice, drawn primarily from service provider organizations across care sectors, supporting them to address practice change. Communities comprised practitioners and other health professionals with a passionate commitment to dementia palliative care and the capacity to drive practice enhancement within partnering organizations.Project aims were to document: (i) changes driven by the communities of practice; (ii) changes in staff/practitioner characteristics during the study (knowledge of a palliative approach and dementia; confidence delivering palliative care; views on death and dying, palliative care, and a palliative approach for dementia); (iii) outcomes from perspectives of family carers, care providers, and community of practice members; (iv) the extent to which changes enhanced practice and care continuity; and (v) barriers to and facilitators of successful community of practice implementation., Methods/design: This action research project was implemented over 14 months in 2010/11 in metropolitan Perth, Western Australia and regional Launceston, Tasmania. Each state based community of practice worked with the researchers to scope existing practice and its outcomes. The research team compiled a report of existing practice recommendations and resources. Findings of these two steps informed community of practice action plans and development of additional resources. Change implementation was recorded and explored in interviews, comparisons being made with practice recommendations. Changes in staff/practitioner characteristics were evaluated using survey data. Findings from semi structured interviews and survey administration established outcomes from perspectives of family carers, care providers, and community of practice members. Consideration of processes and outcomes, across the two state based settings, informed identification of barriers and facilitators. Community of practice reflections also informed study recommendations.

In Australia, many people ageing in their own homes are becoming increasingly frail and unwell, approaching the end of life. A palliative approach, which adheres to palliative care principles, is often appropriate. These principles provide a framework for proactive and holistic care in which quality of life and of dying is prioritised, as is support for families. A palliative approach can be delivered by the general practitioner working with the community aged care team, in collaboration with family carers. Support from specialist palliative care services is available if necessary.The Guidelines for a Palliative Approach for Aged Care in the Community Setting were published by the Australian Government Department of Health and Ageing to inform practice in this area. There are three resource documents. The main document provides practical evidence based guidelines, good practice points, tools, and links to resources. This document is written for general practitioners, nurses, social workers, therapists, pastoral care workers, and other health professionals and responded to needs identified during national consultation. Evidence based guidelines were underpinned by systematic reviews of the research literature. Good practice points were developed from literature reviews and expert opinion. Two 'plain English' booklets were developed in a process involving consumer consultation; one is for older people and their families, the other for care workers.The resources are intended to facilitate home care that acknowledges and plans for the client's deteriorating functional trajectory and inevitable death. At a time when hospitals and residential aged care facilities are under enormous pressure as the population ages, such a planned approach makes sense for the health system as a whole. The approach also makes sense for older people who wish to die in their own homes. Family needs are recognised and addressed. Unnecessary hospitalisations or residential placements and clinically futile interventions are also minimised.

Aims and Objectives: This paper describes further testing of the instrument Patient Evaluation of Emotional Care during Hospitalisation., Background: In 2005, a questionnaire was developed that could be completed by patients to evaluate the quality of emotional care received during their time in hospital. This questionnaire was tested at an acute care private hospital in Perth, Western Australia, with encouraging estimates of reliability and validity. The purpose of this study was to further test this questionnaire in a larger sample of inpatients at a public hospital in the same state., Design: Psychometric evaluation., Method: A hospital-wide survey of 13 wards of a public hospital was conducted. Two hundred and fifty-one patients completed the questionnaire., Results: Psychometric testing of the Patient Evaluation of Emotional Care during Hospitalisation demonstrated acceptable internal consistency reliability. Confirmatory factor analysis substantiated the four sub-scales as follows: Level of Security, Level of Knowing, Level of Personal Value and Level of Connection. The Level of Connection sub-scale was assessed for the first time in this study. This sub-scale had the lowest mean score of all the sub-scales across the hospital as well as in each of the wards surveyed. Qualitative data substantiated, from the patients’ perspective, a lack of connection with hospital staff., Conclusions: Further psychometric testing of the Patient Evaluation of Emotional Care during Hospitalisation instrument has confirmed its psychometric properties and usefulness as an instrument to measure emotional care during hospitalisation., Relevance to Clinical Practice: The Patient Evaluation of Emotional Care during Hospitalisation is a reliable and valid tool with which the emotional care of patients in hospital can be measured and the effectiveness of interventions assessed.

Undergraduate nursing students rate residential aged care an unattractive career option. Some likely causes are beyond the control of the sector, others within or partly within its control. Addressing the problem - the aim of the modelling connections project - is important and urgent. This paper, derived from that project, profiles the characteristics of 12 residential aged care facilities across four Australian states, 66 of their staff and 53 student nurses undertaking clinical placements. Staff and student responses to a 30-item orientation experience survey are compared. Two-thirds of the items - including manual handling, fire and emergency drills, teaching resources, communications and workplace arrangements - reveal a statistically significant inter-group divergence of opinion, with staff consistently more confident of the orientation's effectiveness. More than half the students were unsure on arrival as to whether the staff were expecting them. Two-thirds said they had not been told, or were unsure if they had been told, what to do if upset or anxious. Staff satisfaction with the orientation's quality was greater than student data warranted. Substantial institutional, procedural and behavioural changes seem necessary if student expectations of their clinical placements are to be met and a positive, attractive image of the sector conveyed.

Objective: This study aimed to develop recommendations and a related implementation resource 'toolkit' to facilitate implementation of pain management strategies in Australian Residential Aged Care Facilities (RACFs)., Methods: This qualitative study used written materials, focus groups and individual interviews to gather data from participants. Thirty-four health-care professionals with experience in the aged care sector were recruited from five Western Australian RACFs. General practitioners who had an interest in aged care were contacted via local general practice networks., Results: Findings indicated that focused education sessions were needed to support implementation. A tailored toolkit was developed to assist the process. Funding and workforce constraints were found to be threats to complete implementation in some facilities., Conclusions: A multifaceted approach is needed to promote the implementation of pain management strategies in RACFs. In particular, unlicensed care workers, who may have responsibility for recognising and reporting signs of pain, require further education to support their role in the pain management process.

Objectives: A two-phase study was conducted to refine a version of Cleeland's Brief Pain Inventory (BPI, Short Form) for use in residential aged care facilities (RACFs)., Design: The Australian Pain Society modified Cleeland's BPI by changing numerical response options to word descriptors. In Phase I, this version was tested in RACFs to determine the feasibility of its use, its stability over time, and its internal consistency reliability. Minor modifications resulted. In Phase II, the refined version was abbreviated, and the internal consistency reliability of this Modified Residents' Verbal BPI was examined., Setting: RACFs., Participants: Thirty-three residents of RACFs in Phase I, 149 in Phase II., Intervention: The study revised and abbreviated the BPI to better fit it for use in RACFs, examining the reliability of the tool., Measurements: Mini-Mental State Examination, Global Deterioration Scale, modified BPI., Results: The abbreviated tool comprises three items assessing pain intensity and three assessing pain interference. It also includes an item to specify pain location and a movement protocol. Cronbach alpha coefficient for six intensity and interference items was 0.72 (N=106)., Conclusion: This abbreviated tool requires further testing but has demonstrated adequate internal consistency reliability and is a brief, multidimensional tool that appears feasible for assessing pain in RACFs, including use with residents who have some cognitive impairment. It shows promise as a screening tool and may be useful to assess the effectiveness of pain relief interventions and to measure pain prevalence.

Many frail older people are likely to suffer from fatigue, but tools to measure fatigue in this population are lacking. Stage one of this study explored and described the experiences of fatigue of 12 older people from Australian residential aged care facilities. Themes identified were pacing yourself, battling on, hitting rock bottom, feeling safe, and moving on. Findings indicated that, with support, frail elders may be able to manage fatigue effects themselves. A measure of fatigue was developed from stage one findings, with reference to the literature. In stage two of the study, the Frail Elder Fatigue Assessment Tool was subjected to panel review, piloting, and refinement. The refined tool comprises 20 items in three subscales: fatigue effects; fatigue resources; and adaptation to fatigue. Further work is required to establish the tool's psychometric properties, but it should then be useful for both research and clinical assessment purposes.

Parkinson's disease (PD) is a chronic, progressive, degenerative disorder of the nervous system, causing substantial morbidity and has the capacity to shorten life. People with PD and their families can find the disease devastating. Nevertheless, this population of patients is not usually considered a group to be supported by palliative care specialists. But the nature of the illness and the challenges of managing its many physical and psychological effects raises questions about the potential benefits of a palliative care approach. The purpose of this project was to describe the experience of PD and consider the relevance of palliative care for this population. Semi-structured interviews were conducted with eight people with PD, 21 family caregivers and six health professionals. Five themes were developed from the data analysis: (1) emotional impact of diagnosis; (2) staying connected; (3) enduring financial hardship; (4) managing physical challenges; and (5) finding help for advanced stages. These data revealed that people with PD and family caregivers are confronted with similar issues to people with typical palliative care diagnoses, such as advanced cancer, and that a palliative approach may be helpful in the care of people with PD and their families.

This study aimed to develop a valid and reliable method of measuring symptom distress in frail elderly people capable of providing self reports. We tested a tool used in palliative care settings with 46 elders in residential aged care, refined the tool, and tested the new version with 48 additional elders. Items assessed the prevalence and severity of distress attributed to nausea; pain; insomnia; fatigue; and breathing, bowel and appetite problems in the first phase, and pain; insomnia; fatigue; and breathing, bowel, and bladder problems in the second phase. Participants rated symptom distress on a 10-point scale over 5 days. Internal consistency reliability coefficients for the revised tool ranged from 0.50 to 0.64. Concurrent validity with an established measure of well-being was demonstrated. Further research will assess stability. The tool provides a valid overview of symptom distress in frail aged people able to provide self reports.

This study refined the Support Needs Inventory for Parents of Asthmatic Children (SNIPAC) (Coleman, Maltby, Kristjanson, & Robinson, 2001) to produce a more parsimonious tool to assess the importance and meet the support needs of parents of children with asthma. The original tool was completed by 145 parents of 199 children with asthma, and 74 of these also provided test-retest responses. Internal consistency reliability, construct validity, and stability over time were assessed and refinements were made. Internal consistency reliability of the revised 20-item tool ranged from .77 to .95 for the three subscales of the Parent's Priority Scale (PPS), and .92 for the full PPS. Cronbach's alphas ranged from .74 to .90 for the three subscales of the Parent's Fulfillment Scale (PFS) and was .91 for the full scale. Factor analysis results of the PPS were compatible with the tool's conceptual framework. The revised 20-item tool demonstrated adequate psychometric properties in most areas. This tool may be used for research or clinical screening without imposing undue burden on parents. Further work is required to establish the tool's stability over time.

Huntington's disease is a genetic, neurological disorder characterized by mid-life onset, involuntary movements, cognitive decline, behavioral disturbance, and inexorable progression. The impact of Huntington's disease is devastating for individuals and their families as it is a disease with a long trajectory; many young people are aware that they may develop the illness for years before there are obvious symptoms. There is therefore ample opportunity to plan and choreograph the care and supportive services for people with Huntington's disease and their families. The present study was conducted to explore the needs for palliative (supportive) care service provision of people with Huntington's disease and their families/informal carers. Six people with the disease, 19 informal carers and seven health care workers with specialized knowledge took part in individual, semistructured interviews, which were analyzed thematically. Themes were: (i). adjusting to the impact of the illness; (ii). surviving the search for essential information; (iii). gathering practical support from many sources; (iv). bolstering the spirit; (v). choreographing individual care and; (vi). fearing the future. Our findings demonstrate that palliative care services for people with Huntington's disease and their informal carers need to provide expert psychological and practical support and perhaps most importantly, be flexible, adequately planned and choreographed.