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.

Testing the reliability of the Health Literacy Questionnaire with carers of older adults receiving hospital care.

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.

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.

Assessment of functional health literacy in Brazilian carers of older people.

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.

Indivíduos com baixo alfabetismo em saúde têm menos conhecimento sobre sua própria condição de saúde. Cuidadores desempenham um papel fundamental nas atividades de vida diária dos idosos. OBJETIVO: avaliar o desempenho de cuidadores de pessoas idosas usando o "S-TOFHLA (Short Test of Functional Health Literacy in Adults)" e identificar características do cuidador associadas ao baixa alfabetismo em saúde. MÉTODOS: um estudo transversal foi conduzido. O S-TOFHLA, um instrumento sociodemográfico, o Miniexame do Estado Mental e o "Patient Health Questionnaire - 2" foram aplicados a 80 cuidadores de pacientes idosos rotineiramente acompanhados por médicos do Setor de Atenção Primária à Saúde da cidade de Botucatu, São Paulo. A análise multivariada utilizou um modelo de regressão logística ordinal com os escores do S-TOFHLA como variável dependente. O nível de significância estatística adotado foi de 0,05. RESULTADOS: os indivíduos tiveram idade média de 54,6 (± 11,7) anos; 27% dos cuidadores avaliados apresentavam níveis inadequados de alfabetização em saúde. Uma proporção maior de indivíduos com baixa escolaridade apresentou alfabetização em saúde inadequada e limítrofe (p<0,001). CONCLUSÃO: aproximadamente 1/3 dos cuidadores apresentaram níveis limítrofes e inadequados de alfabetização em saúde. Esses resultados destacam as dificuldades de muitos cuidadores em compreender informações sobre saúde.

Assessment of functional health literacy in Brazilian carers of older people / Avaliação do analfabetismo funcional em saúde em cuidadores de idosos brasileiros

ABSTRACT. 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.

RESUMO. Indivíduos com baixo alfabetismo em saúde têm menos conhecimento sobre sua própria condição de saúde. Cuidadores desempenham um papel fundamental nas atividades de vida diária dos idosos. Objetivo: avaliar o desempenho de cuidadores de pessoas idosas usando o "S-TOFHLA (Short Test of Functional Health Literacy in Adults)" e identificar características do cuidador associadas ao baixa alfabetismo em saúde. Métodos: um estudo transversal foi conduzido. O S-TOFHLA, um instrumento sociodemográfico, o Miniexame do Estado Mental e o "Patient Health Questionnaire - 2" foram aplicados a 80 cuidadores de pacientes idosos rotineiramente acompanhados por médicos do Setor de Atenção Primária à Saúde da cidade de Botucatu, São Paulo. A análise multivariada utilizou um modelo de regressão logística ordinal com os escores do S-TOFHLA como variável dependente. O nível de significância estatística adotado foi de 0,05. Resultados: os indivíduos tiveram idade média de 54,6 (± 11,7) anos; 27% dos cuidadores avaliados apresentavam níveis inadequados de alfabetização em saúde. Uma proporção maior de indivíduos com baixa escolaridade apresentou alfabetização em saúde inadequada e limítrofe (p<0,001). Conclusão: aproximadamente 1/3 dos cuidadores apresentaram níveis limítrofes e inadequados de alfabetização em saúde. Esses resultados destacam as dificuldades de muitos cuidadores em compreender informações sobre saúde.

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 .

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.

Obtaining information from family caregivers to inform hospital care for people with dementia: A pilot study.

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.

Bed Moves, Ward Environment, Staff Perspectives and Falls for Older People with High Falls Risk in an Acute Hospital: A Mixed Methods Study.

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.

Hospital postdischarge intervention trialled with family caregivers of older people in Western Australia: potential translation into practice.

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.

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.

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.

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.

Peer-led Aboriginal parent support: Program development for vulnerable populations with participatory action research.

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.

Effectiveness of psychosocial interventions in reducing grief experienced by family carers of people with dementia: a systematic review.

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.

Knowledge of Dementia: Do family members understand dementia as a terminal condition?

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.

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.

Outcomes for family carers of a nurse-delivered hospital discharge intervention for older people (the Further Enabling Care at Home Program): Single blind randomised controlled trial.

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.