The cost-effectiveness of a telephone-based intervention to support caregivers of older people discharged from hospital.

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.

Caregivers' experiences of a home support program after the hospital discharge of an older family member: a qualitative analysis.

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 .

Aboriginal parent support: A partnership approach.

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.

Revisiting the Pain Resource Nurse Role in Sustaining Evidence-Based Practice Changes for Pain Assessment and Management.

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.

Personal emergency alarms: do health outcomes differ for purchasers and nonpurchasers?

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.

Piloting staff education in Australia to reduce falls in older hospital patients experiencing delirium.

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.

The emerging role of the urban-based aboriginal peer support worker:A Western Australian study.

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.

Exploring risk profiles and emergency frequency of purchasers and non-purchasers of personal emergency alarms: a prospective cohort study.

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.

Protocol for a randomised controlled trial of an outreach support program for family carers of older people discharged from hospital.

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 .

What should we know about dementia in the 21st century? A Delphi consensus study.

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.

Can a community of practice enhance a palliative approach for people drawing close to death with dementia?

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.

Implementation of sustainable evidence-based practice for the assessment and management of pain in residential aged care facilities.

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.

Who knows, who cares? Dementia knowledge among nurses, care workers, and family members of people living with dementia.

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.

Early re-presentation to hospital after discharge from an acute medical unit: perspectives of older patients, their family caregivers and health professionals.

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.

Developing and testing a strategy to enhance a palliative approach and care continuity for people who have dementia: study overview and protocol.

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.

Evaluating the feasibility and effect of using a hospital-wide coordinated approach to introduce evidence-based changes for pain management.

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.

Measurement properties of self-report instruments to assess health literacy in older adults: a systematic review.

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.

Further psychometric testing of an instrument to measure emotional care in hospital.

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.

A qualitative exploration of family carer's understandings of people with dementia's expectations for the future.

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.

Development of the dementia community attitudes questionnaire.

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.