Advance planning for research participation: Time to translate this innovation into practice.

OBJECTIVES: Advance planning for research is a process that involves thinking about, discussing and expressing preferences for taking part in research during future periods of incapacity. The process may include making an advance research directive and naming trusted people to be involved in decisions about research participation. Advance research planning could help to overcome barriers to including people with dementia in research. To encourage innovation in this area, this article presents recommendations informed by a stakeholder workshop that brought together consumer representatives and representatives active in dementia, ageing and health-related research, policy-making, advocacy and service delivery in health and aged care. METHODS: An online workshop where 15 stakeholders shared perspectives and suggestions for implementing advance research planning, with a focus on research involving people with dementia. RESULTS: Raising awareness of advance research planning requires multi-faceted strategies. Training and resources are needed for researchers, ethics committees and organisations regarding this form of advance planning and the use of research directives. Like any form of advance planning, planning ahead for research must be a voluntary, informed and person-centred process. There is a lack of uniform legal rules on research involving people who lack the capacity to consent; however, advance research directives could, in principle, inform decisions about research participation. CONCLUSIONS: As a matter of law, policy and practice, people are encouraged to plan ahead in many areas of their life. Research planning has been relatively neglected, and the recommendations offered here aim to encourage innovation in research and implementation in this area.

Advance Care Planning Practices in the Nursing Home Setting: A Secondary Analysis.

BACKGROUND AND OBJECTIVES: Advance care planning is intended to support residents' preferences regarding health decisions, even when they can no longer participate. Little is known about the power discourses influencing how residents, family members, and health care workers engage in advance care planning and how advance care directives are used if a conflict arises. A large critical ethnographic study was conducted exploring decision making when a resident's health deteriorates in the nursing home setting. Advance care planning practices were not the focus of the original study, but the richness of the data warranted further exploration. A new research question was developed to inform a secondary analysis: How does advance care planning influence the relationship between resident values and clinical expertise when determining a direction of care at the time of a resident deterioration? RESEARCH DESIGN AND METHODS: A secondary analysis of data from an ethnographic study involving 184 h of participatory observation, 40 semistructured interviews and advance care planning policies, and document review undertaken in two nursing homes in Melbourne, Australia. RESULTS: Advance care planning may result in inaccurate documentation of residents' preferences and devalue clinical decision making and communication with residents and family members at the time of deterioration. DISCUSSION AND IMPLICATIONS: Advance care planning may contribute toward a reductionist approach to decision making. There is an urgent need for the development of evidence-based policy and legislation to support residents, families, and health care workers to make appropriate decisions, including withholding invasive treatment when a resident deteriorates.

Consumer expectations and experiences of quality in Australian home-based community services.

Australians want to live at home as they age and seek support from health and social care services to achieve this. The consumer driven market-based approach to community services in Australia has resulted in an increases in user's expectations of quality. What constitutes a quality service from the consumer's perspective is an important agenda to understand as the focus of care delivery moves to the domiciliary setting. This paper presents one aspect from a grounded theory PhD study, the aim of which was to understand the lived experience of receiving services in the home and its impact on the meaning of home. Participants were 11 people with dementia and 18 family supporters living in the state of Victoria, Australia. Data were collected between 2015 and 2017 through multiple interviews, photographic images, field notes and memos. NVIVO 10 qualitative analysis software program was used to support constant comparative analysis. Using a grounded theory approach, this study found that the decision to engage with community services was driven by the need to maintain autonomy, self-identity and home life. Participants sought quality services but discovered a dichotomy of positive and negative aspects in the way services were delivered. The most common reaction to the experience of poor-quality care was to reflect on their expectations for care quality; and manage the reality of what was delivered. Team work and service responsiveness were positive characteristics but were offset by service limitations and inefficiencies caused by poor communication and poor staff retention. The interpersonal relationships that participants developed with staff was highlighted; trust was an important factor whereas unreliable, task orientated and poorly trained staff would be rejected. The implications for policy and practice are described.

Recognition and assessment of resident' deterioration in the nursing home setting: A critical ethnography.

AIMS AND OBJECTIVES: To explore the recognition and assessment of resident deterioration in the nursing home setting. BACKGROUND: There is a dearth of research exploring how nurses and personal-care-assistants manage a deteriorating nursing home resident. DESIGN: Critical ethnography. METHODS: Observation and semi-structured interviews with 66 participants (general medical practitioners, nurses, personal-care-assistants, residents and family members) in two Australian nursing homes. The study has been reported in accordance with the Consolidated Criteria for Reporting Qualitative Research guidelines. RESULTS: The value of nursing assessment is poorly recognised in the nursing home setting. A lack of clarity regarding the importance of nursing assessments associated with resident care has contributed to a decreasing presence of registered nurses and an increasing reliance on personal-care-assistants who had inadequate skills and knowledge to recognise signs of deterioration. Registered nurses experienced limited organisational support for autonomous decision-making and were often expected to undertake protocol-driven decisions that contributed to potentially avoidable hospital transfers. CONCLUSIONS: Nurses need to demonstrate the importance of assessment, in association with day-to-day resident care and demand standardised, regulated, educational preparation of an appropriate workforce who are competent in undertaking this role. Workforce structures that enhance familiarity between nursing home staff and residents could result in improved resident outcomes. The value of nursing assessment, in guiding decisions at the point of resident deterioration, warrants further consideration.

Evidence-based occupational therapy for people with dementia and their families: What clinical practice guidelines tell us and implications for practice.

BACKGROUND/AIM: The first evidence-based Clinical Practice Guidelines and Principles of Care for People with Dementia in Australia have been released. The Guidelines detail a number of important evidence-based recommendations for occupational therapists. The aim of this paper is (1) to provide an overview of Guideline development, and (2) to describe the evidence supporting a recommendation for occupational therapy. Common characteristics of effective occupational therapy programmes for people with dementia are described. METHODS: Guideline development involved adaptation of existing high-quality guidelines developed overseas and 17 systematic reviews to ensure that the most recent high-quality evidence was included. One of the systematic reviews involved examining the evidence for interventions to promote independence in people with dementia. Specifically, we looked at the evidence for occupational therapy and its effect on activities of daily living, quality of life and carer impact. RESULTS: A total of 109 recommendations are included in the Guidelines. Occupational therapy was found to significantly increase independence in activities of daily living and improve quality of life. Effective occupational therapy programmes involve: environmental assessment, problem solving strategies, carer education and interactive carer skills training. CONCLUSION: Occupational therapists working with people with dementia in community settings should ensure that their time is spent on those aspects of intervention that are shown to be effective.

Clinical practice guidelines for dementia in Australia.

About 9% of Australians aged 65 years and over have a diagnosis of dementia. Clinical practice guidelines aim to enhance research translation by synthesising recent evidence for health and aged care professionals. New clinical practice guidelines and principles of care for people with dementia detail the optimal diagnosis and management in community, residential and hospital settings. The guidelines have been approved by the National Health and Medical Research Council. The guidelines emphasise timely diagnosis; living well with dementia and delaying functional decline; managing symptoms through training staff in how to provide person-centred care and using non-pharmacological approaches in the first instance; and training and supporting families and carers to provide care.

"The Red Dress or the Blue?": How Do Staff Perceive That They Support Decision Making for People With Dementia Living in Residential Aged Care Facilities?

Respect for a person's right to make choices and participate in decision making is generally seen as central to quality of life and well-being. When a person moves into a residential aged care facility (RACF), however, decision making becomes more complicated, particularly if the person has a diagnosis of dementia. Little is known about how staff in RACFs perceive that they support decision making for people with dementia within their everyday practice, and this article seeks to address this knowledge gap. The article reports on the findings of a qualitative study conducted in the states of Victoria and Queensland, Australia with 80 direct care staff members. Findings revealed that the participants utilized a number of strategies in their intention to support decision making for people with dementia, and had an overall perception that "a little effort goes a long way."

"We Have to Work Within the System!": Staff Perceptions of Organizational Barriers to Decision Making for Older Adults With Dementia in Australian Aged Care Facilities.

The current study explored the perceptions of direct care staff working in Australian residential aged care facilities (RACFs) regarding the organizational barriers that they believe prevent them from facilitating decision making for individuals with dementia. Normalization process theory (NPT) was used to interpret the findings to understand these barriers in a broader context. The qualitative study involved semi-structured interviews (N = 41) and focus groups (N = 8) with 80 direct care staff members of all levels working in Australian RACFs. Data collection and analysis were conducted in parallel and followed a systematic, inductive approach in line with grounded theory. The perceptions of participants regarding the organizational barriers to facilitating decision making for individuals with dementia can be described by the core category, Working Within the System, and three sub-themes: (a) finding time, (b) competing rights, and (c) not knowing. Examining the views of direct care staff through the lens of NPT allows possible areas for improvement to be identified at an organizational level and the perceived barriers to be understood in the context of promoting normalization of decision making for individuals with dementia.

A meta-synthesis of factors influencing nursing home staff decisions to transfer residents to hospital.

AIM: To report a meta-synthesis of qualitative research studies exploring the role of nursing home staff in decisions to transfer residents to hospital. BACKGROUND: Nurses and nurse assistants provide the majority of care to residents living in nursing homes and may be the only health workers present when a resident deteriorates. To inform future strategies, it is vital to understand the role of nursing home staff in decisions to transfer to hospital. DESIGN AND REVIEW METHODS: A systematic review identified 17 studies to be included. The process of meta-synthesis was undertaken using the Joanna Briggs Institute's guidelines. DATA SOURCES: Qualitative research papers published between January 1989-October 2012 were identified in key databases including Cinahl, Embase, Medline and PsycInfo. RESULTS: Nursing home staff members play a key role in decision-making at the time of a resident's deterioration. Multiple factors influence decisions to transfer to hospital including an unclear expectation of the nursing home role; limited staffing capacity; fear of working outside their scope of practice; poor access to multidisciplinary support and difficulties communicating with other decision-makers. CONCLUSIONS: There is a lack of consensus regarding the role of the nursing home when a resident's health deteriorates. Nursing home staff would benefit from a clear prescription of their expected minimum clinical skill set; a staffing capacity that allows for the increased requirements to manage residents on-site, greater consistency in access to outside resources and further confidence and skills to optimize their role in resident advocacy.

Social participation and family carers of people living with dementia in Australia.

This paper reports on a study exploring the experiences and meaning of social participation for family carers of people living with dementia. Participants were 33 family carers (17 spouses and 16 adult children) of older adults diagnosed with dementia (any stage or type) who responded to advertisements by the national Alzheimer's association, Alzheimer's Australia. Data were collected through semi-structured face-to-face and/or telephone interviews using an interview guide, which included prompts such as 'Tell me about what social participation means to you', and 'How did this change…'. The methods of grounded theory were drawn upon to guide sampling and analysis of data, which continued until theoretical saturation was achieved and occurred over the period September 2011 to March 2012. Data arising from the interviews were analysed line-by-line and coded and categorised using the constant comparative method, with codes clustered into themes and with abstraction from the themes to arrive at the core process. The core category arising from the data was adaptation, which encompassed four main themes: autonomy to choose; the impact of care-giving; employing strategies; and establishing meaningful connections. Carers went through a process whereby the ways in which they had previously participated socially were compromised, which often prompted an exploration of new ways in which to remain socially engaged.

Factors that influence the approach to leadership: directors of nursing working in rural health services.

AIM: To identify factors that influence directors of nursing in their approach to leadership when working in rural Victoria, Australia. BACKGROUND: In rural areas, nurses account for the largest component of the health workforce and must be equipped with leadership knowledge and skills to lead reform at a service level. METHOD: A qualitative descriptive design was used. In-depth semi-structured interviews were undertaken with directors of nursing from rural Victoria. Data were analysed using thematic analysis and a thematic network was developed. RESULTS: Empowerment emerged as the highest order category in the thematic network. This was derived from three organising themes: influence, capital and contextual understanding and the respective basic themes: formal power, informal power, self-knowledge; information, support, resources; and situational factors, career trajectory, connectedness. CONCLUSION: Rural nurse leaders contend with several issues that influence their approach to leadership. This study provides a platform for further research to foster nurse leadership in rural healthcare services. IMPLICATIONS FOR NURSING MANAGEMENT: Acknowledgement of what influences the rural nurse leaders' approach to leadership may assist in the implementation of initiatives designed to develop leadership in a manner that is contextually sensitive.

Supporting residents' expression of sexuality: the initial construction of a sexuality assessment tool for residential aged care facilities.

BACKGROUND: Sexuality is a key component of quality of life and well-being and a need to express one's sexuality continues into old age. Staff and families in residential aged care facilities often find expressions of sexuality by residents, particularly those living with dementia, challenging and facilities often struggle to address individuals' needs in this area. This paper describes the development of an assessment tool which enables residential aged care facilities to identify how supportive their organisation is of all residents' expression of their sexuality, and thereby improve where required. METHODS: Multi-phase design using qualitative methods and a Delphi technique. Tool items were derived from the literature and verified by qualitative interviews with aged care facility staff, residents and families. The final item pool was confirmed via a reactive Delphi process. RESULTS: A final item pool of sixty-nine items grouped into seven key areas allows facilities to score their compliance with the areas identified as being supportive of older people's expression of their sexuality in a residential aged care environment. CONCLUSIONS: The sexuality assessment tool (SexAT) guides practice to support the normalization of sexuality in aged care homes and assists facilities to identify where enhancements to the environment, policies, procedures and practices, information and education/training are required. The tool also enables facilities to monitor initiatives in these areas over time.

'We need to know what's going on': views of family members toward the sexual expression of people with dementia in residential aged care.

This paper reports on a study which explored the views and attitudes of family members towards the sexual expression of residents with dementia in residential aged care facilities in two states in Australia. Recruitment was challenging and only seven family members agreed to an interview on this topic. Data were analysed using a constant comparative method. Family were generally supportive of residents' rights to sexual expression, but only some types of behaviours were approved of. There was an acknowledgement that responding to residents' sexuality was difficult for staff and many families believed that they should be kept informed of their relative's sexual behaviours and moreover be involved in decision making about it. Findings suggest the need for family education and a larger study to better understand the views and motivations of family carers and how these might impact on the sexual expression of the older person with dementia living in residential aged care.

Perceptions of structural empowerment: nurse leaders in rural health services.

AIM: To provide insight into the perceptions of structural empowerment of nurse leaders working in rural and regional Victoria, Australia. BACKGROUND: Fostering nurse leadership in rural health services may be informed by gaining insight into rural nurse leaders' perceptions of structural empowerment. METHOD: A sample of nurse executives (n = 45) from hospitals throughout rural Victoria, Australia completed the Conditions of Work Effectiveness Questionnaire II (CWEQ-II) aimed to measure structural empowerment. RESULTS: Rural nurse leaders' perceive themselves to be moderately empowered. CONCLUSION: The concept of structural empowerment may be useful to inform rural leadership practices. IMPLICATIONS FOR NURSING MANAGEMENT: Acknowledgement of structural empowerment by nurse leaders may assist in the process of formulating strategies to facilitate an open, honest and responsive culture of patient safety, removing silos, departmental turf issues, and professional territoriality in healthcare services.

Being central to decision making means I am still here!: the essence of decision making for people with dementia.

The ability to make choices and decisions, and to have those decisions upheld, is central to self-determination. For people living with a diagnosis of dementia, however, it can be difficult to remain involved in decision making. While many studies show that people with mild or moderate dementia have the ability to participate in decision making, there are also indications that the attitudes of those around them, including health professionals and family carers, can sometimes be a barrier, and there is generally little understanding about the nature of decision making for this population. This small pilot study draws on van Manen's approach to phenomenology to explore the essence of decision making for people living with dementia. The findings highlight the importance of remaining central to decision making, and the key role that subtle support from carers plays in enabling this.

Using participatory action research to foster nurse leadership in Australian rural hospitals.

This paper outlines the processes and results of a participatory action research study undertaken to identify issues that may impact on strategies to foster nurse leadership in rural hospitals. Five Directors of Nursing from rural regions of Victoria, Australia participated. The group activities involved discussion and analysis of previous research, a review of current literature and critical reflection of the leadership performance of their organization. The analysis identified five key themes; dispel the myths, adopt big-picture thinking, connect with colleagues, reflect on your own conduct, and create organizational buy-in. It is essential to have an awareness of contextual challenges, an understanding of the importance of your own conduct as a visible leader, and the need for effective communication to inform the development of strategies that may be used to foster nurse leadership in rural hospitals. The platform to discuss and critically analyze leadership saw a group consensus that affirmed the need for any approach to nursing leadership to be tailored to the individual healthcare organization.

General practitioner service provision in residential aged care facilities: 1998-2011.

AIM: To examine the general practitioner (GP) consultation patterns for primary health-care services provided in residential aged care facilities (RACFs) by consultation type. METHOD: Analyses of service provision and RACF population data for the period 1998-2011. All Medicare-subsidised services provided by GPs across Australia in RACFs were included and categorised by consultation type and by time of service delivery (business or after-hours). RESULTS: Overall service delivery increased from 12 118 per 1000 residents in financial year (FY) 1998-99 to 17 079 per 1000 residents in FY2010-11, a 41% increase. Since FY2007-08, the rate of brief consultations has grown by an average of 20% each year. Delivery of after-hours consultations also increased. CONCLUSIONS: The pattern of GP services provided in RACFs has changed substantially over time. To some extent these changes reflect regulatory adjustments; however, the pattern is at odds with the ever-increasing dependence levels of residents.

The person-centred care of older people with cognitive impairment in acute care scale (POPAC).

AIM: To construct and evaluate psychometric properties of the person-centred care of older people with cognitive impairment in acute care settings (POPAC) scale. BACKGROUND: Older people with cognitive impairment are admitted frequently to acute care, with needs not always met through standard practice. Best practice models have been suggested, but few assessment scales exist. METHODS: Psychometric evaluation using statistical estimates of validity and reliability based on an Australian sample of acute care nursing staff (n = 212). RESULTS: The final 15-item questionnaire consists of three subscales, 'using cognitive assessments and care interventions', 'using evidence and cognitive expertise' and 'individualizing care'. Estimates of validity and reliability were highly satisfactory. CONCLUSION: The POPAC scale makes a valuable contribution by providing valid and reliable measures of the extent to which acute nursing staff report using best practice care processes to identify and consider cognitive impairment and to employ nursing interventions to meet the needs associated with old age and cognitive impairment. IMPLICATIONS FOR NURSING MANAGEMENT: The POPAC scale is short, easy to administer and not time consuming to complete, but still provides clinically relevant information. It can be used as a conceptual fundament in developing best practice nursing care in the acute clinical setting, as well as for nursing research.

A scoping review identifying contemporary issues in rural nursing leadership.

PURPOSE: Rural nurse leaders on a global scale are being challenged to create structures and processes to enable excellence in nursing care. The purpose of this scoping review is to offer an indication of the available literature relating to contemporary issues in rural nursing leadership. A review of contemporary issues facing rural nurse leaders is timely to assist strategy development that will achieve the goal of excellence in nursing. ORGANIZING CONSTRUCT: An interpretative scoping literature review methodological framework has been used with an emphasis on thematic construction. METHOD: Literature published between 2008 and 2012 was reviewed from five electronic databases using the key words rural, nursing, and leadership. FINDINGS: Four themes have been identified: expectations of rural nursing leadership, a highly educated workforce, competing interests, and partnering within rural healthcare systems. CONCLUSIONS: The content may resonate with rural nurse leaders and encourage a greater awareness of their relevance to leadership practices. CLINICAL RELEVANCE: The findings provide a greater awareness and understanding of contemporary issues facing rural nurse leaders and may assist with the development of context-sensitive leadership strategies to facilitate excellence in nursing care.

What is pain? A phenomenological approach to understanding.

This paper presents four phenomenological accounts of pain which describe: the pain at the time of the experience; the meaning the pain had at the time of the experience (reflection in); and the meaning of the experience looking back on it (reflection upon). Specifically, the accounts describe pain that is emotional, cognitive and physical (acute and chronic). By exploring the essence of pain using very personal accounts, we encourage nurses to reflect on how their own understanding of pain and individual responses to pain can impact on how they in turn recognise, assess and manage pain in older people and especially those living with dementia. Paper 1 highlights the under-assessment of pain in older people with dementia. By confronting readers with this paper's phenomenological approach, it is hoped that they will be challenged to address this situation.