Aboriginal palliative care and mainstream services

The Aboriginal person's strong wish to die at home with family, surrounded by their 'country' and in their own community means effective palliative care services must be Aboriginal centred and focused.

Time-limited home-care reablement services for maintaining and improving the functional independence of older adults

Background: Reablement, also known as restorative care, is one possible approach to home-care services for older adults at risk of functional decline. Unlike traditional home-care services, reablement is frequently time-limited (usually six to 12 weeks) and aims to maximise independence by offering an intensive multidisciplinary, person-centred and goal-directed intervention. Objectives: To assess the effects of time-limited home-care reablement services (up to 12 weeks) for maintaining and improving the functional independence of older adults (aged 65 years or more) when compared to usual home-care or wait-list control group. Search methods: We searched the following databases with no language restrictions during April to June 2015: the Cochrane Central Register of Controlled Trials (CENTRAL); MEDLINE (OvidSP); Embase (OvidSP); PsycINFO (OvidSP); ERIC; Sociological Abstracts; ProQuest Dissertations and Theses; CINAHL (EBSCOhost); SIGLE (OpenGrey); AgeLine and Social Care Online. We also searched the reference lists of relevant studies and reviews as well as contacting authors in the field. Selection criteria: We included randomised controlled trials (RCTs), cluster randomised or quasi-randomised trials of time-limited reablement services for older adults (aged 65 years or more) delivered in their home; and incorporated a usual home-care or wait-list control group. Data collection and analysis: Two authors independently assessed studies for inclusion, extracted data, assessed the risk of bias of individual studies and considered quality of the evidence using GRADE. We contacted study authors for additional information where needed. Main results: Two studies, comparing reablement with usual home-care services with 811 participants, met our eligibility criteria for inclusion; we also identified three potentially eligible studies, but findings were not yet available. One included study was conducted in Western Australia with 750 participants (mean age 82.29 years). The second study was conducted in Norway (61 participants; mean age 79 years). We are very uncertain as to the effects of reablement compared with usual care as the evidence was of very low quality for all of the outcomes reported. The main findings were as follows. Functional status: very low quality evidence suggested that reablement may be slightly more effective than usual care in improving function at nine to 12 months (lower scores reflect greater independence; standardised mean difference (SMD) -0.30; 95% confidence interval (CI) -0.53 to -0.06; 2 studies with 249 participants). Adverse events: reablement may make little or no difference to mortality at 12 months' follow-up (RR 0.97; 95% CI 0.74 to 1.29; 2 studies with 811 participants) or rates of unplanned hospital admission at 24 months (RR 0.94; 95% CI 0.85 to 1.03; 1 study with 750 participants). The very low quality evidence also means we are uncertain whether reablement may influence quality of life (SMD -0.23; 95% CI -0.48 to 0.02; 2 trials with 249 participants) or living arrangements (RR 0.92, 95% CI 0.62 to 1.34; 1 study with 750 participants) at time points up to 12 months. People receiving reablement may be slightly less likely to have been approved for a higher level of personal care than people receiving usual care over the 24 months' follow-up (RR 0.87; 95% CI 0.77 to 0.98; 1 trial, 750 participants). Similarly, although there may be a small reduction in total aggregated home and healthcare costs over the 24-month follow-up (reablement: AUD 19,888; usual care: AUD 22,757; 1 trial with 750 participants), we are uncertain about the size and importance of these effects as the results were based on very low quality evidence. Neither study reported user satisfaction with the service. Authors' conclusions: There is considerable uncertainty regarding the effects of reablement as the evidence was of very low quality according to our GRADE ratings. Therefore, the effectiveness of reablement services cannot be supported or refuted until more robust evidence becomes available. There is an urgent need for high quality trials across different health and social care systems due to the increasingly high profile of reablement services in policy and practice in several countries.

General practitioners’ experiences of the psychological aspects in the care of a dying patient

Objective: General practitioners (GPs) play an integral role in addressing the psychological needs of palliative care patients and their families. This qualitative study investigated psychosocial issues faced by GPs in the management of patients receiving palliative care and investigated the themes relevant to the psychosocial care of dying patients. Method: Fifteen general practitioners whose patient had been recently referred to the Mt. Olivet Palliative Home Care Services in Brisbane participated in an individual case review discussions guided by key questions within a semistructured format. These interviews focused on the psychosocial aspects of care and management of the referred patient, including aspects of the doctor/patient relationship, experience of delivering diagnosis and prognosis, addressing the psychological concerns of the patients' family, and the doctors' personal experiences, reactions, and responses. Qualitative analysis was conducted on the transcripts of these interviews. Results: The significant themes that emerged related to perceived barriers to exploration of emotional concerns, including spiritual issues, and the discussion of prognosis and dying, the perception of patients' responses/coping styles, and the GP's personal experience of the care (usually expressed in terms of identification with patient). Significance of results: The findings indicate the significant challenges facing clinicians in discussions with patients and families about death, to exploring the patient's emotional responses to terminal illness and spiritual concerns for the patient and family. These qualitative date indicate important tasks in the training and clinical support for doctors providing palliative care.

The Impact of Experiential Learning in Enhancing Palliative Care Knowledge and Skills among Nurses

Nurses working in community settings are increasingly required to care for people with chronic, life limiting conditions. Innovative educational programs are required to ensure nurses are equipped to deal with this challenging area of practice. The Program of Experience in the Palliative Approach (PEPA) started in 2003 as an initiative of the Australian Government, Department of Health and Ageing. The overall aim of PEPA is to improve the quality, availability and access to palliative care for people who are dying, and their families, by improving the skills and expertise of health practitioners, and enhancing collaboration between primary and specialist palliative care services. PEPA provides nurses with an opportunity to develop knowledge and skills in the palliative approach to care through funded clinical workforce placements or workshops.

Getting creative in health care

Health care accounts for a substantial and growing share of national expenditures, and Australia’s health-care system faces some unprecedented pressures. This paper examines the contribution of creative expertise and services to Australian health care. They are found to be making a range of contributions to the development and delivery of health-care goods and services, the initial training and ongoing professionalism of doctors and nurses, and the effective functioning of health-care buildings. Creative activities within health-care services are also undertaken by medical professionals and patients. Key functions that creative activities address are innovation and service delivery in information management and analysis, and making complex information comprehensible or more useful, assisting communication and reducing psycho-social and distance-mediated barriers, and improving the efficiency and effectiveness of services.

Terminally-ill people living alone without a caregiver: an Australian national scoping study of palliative care needs

Home-based palliative care services are facing increasing challenges in servicing the needs of clients who live alone and without a primary caregiver. The findings from the analysis of 721 services’ records from three Australian states, and feedback from health professionals in interviews and postal surveys, demonstrated that there were aspects of being on one’s own with a terminal illness and living at home that require a specialised approach and support. This study explored the issues of palliative care patients living alone, from a service provider perspective, and provided evidence-based information to assist with service planning. The study made recommendations to the Australian Department of Health and Ageing about services considered important in developing support structures for this growing population.

Health promotion in palliative care : the case for conceptual congruence

This article provides a critical review of the literature relevant to the conceptual foundations of health promoting palliative care. It explores the separate emergence and evolution of palliative care and health promotion as distinct concerns in health care, and reviews the early considerations given to their potential convergence. Finally, this article examines the proposal of health promoting palliative care as a specific approach to providing end of life care through a social model of palliative care. Research is needed to explore the impact for communities, health care services and policy when such an approach is implemented within palliative care organisations.

An ecology of centre-based child care

The studies in the thesis were derived from a program of research focused on centre-based child care in Australia. The studies constituted an ecological analysis as they examined proximal and distal factors which have the potential to affect children's developmental opportunities (Bronfenbrenner, 1979). The project was conducted in thirty-two child care centres located in south-east Queensland. Participants in the research included staff members at the centres, families using the centres and their children. The first study described the personal and professional characteristics of one hundred and forty-four child care workers, as well as their job satisfaction and job commitment. Factors impinging on the stability of care afforded to children were examined, specifically child care workers' intentions to leave their current position and actual staff turnover at a twelve month follow-up. This is an ecosystem analysis (Bronfenbrenner & Crouter, 1983), as it examined the world of work for carers; a setting not directly involving the developing child, but which has implications for children's experiences. Staff job satisfaction was focused on working with children and other adults, including parents and colleagues. Involvement with children was reported as being the most rewarding aspect of the work. This intrinsic satisfaction was enough to sustain caregivers' efforts to maintain their employment in child care programs. It was found that, while improving working conditions may help to reduce turnover, it is likely that moderate turnover rates will remain as child care staff work in relatively small centres and they leave in order to improve career prospects. Departure from a child care job appeared to be as much about improving career opportunities or changing personal circumstances, as it was about poor wages and working conditions. In the second study, factors that influence maternal satisfaction with child care arrangements were examined. The focus included examination of the nature and qualities of parental interaction with staff. This was a mesosystem analysis (Bronfenbrenner & Crouter, 1983), as it considered the links between family and child care settings. Two hundred and twenty-two questionnaires were returned from mothers whose children were enrolled in the participating centres. It was found that maternal satisfaction with child care encompassed the domains of child-centred and parent-centred satisfaction. The nature and range of responses in the quantitative and qualitative data indicated that these parents were genuinely satisfied with their children's care. In the prediction of maternal satisfaction with child care, single parents, mothers with high role satisfaction, and mothers who were satisfied with the frequency of staff contact and degree of supportive communication had higher levels of satisfaction with their child care arrangements. The third study described the structural and process variations within child care programs and examined program differences for compliance with regulations and differences by profit status of the centre, as a microsystem analysis (Bronfenbrenner, 1979). Observations were made in eighty-three programs which served children from two to five years. The results of the study affirmed beliefs that nonprofit centres are superior in the quality of care provided, although this was not to a level which meant that the care in for-profit centres was inadequate. Regulation of structural features of child care programs, per se, did not guarantee higher quality child care as measured by global or process indicators. The final study represented an integration of a range of influences in child care and family settings which may impact on development. Features of child care programs which predict children's social and cognitive development, while taking into account child and family characteristics, were identified. Results were consistent with other research findings which show that child and family characteristics and child care quality predict children's development. Child care quality was more important to the prediction of social development, while family factors appeared to be more predictive of cognitive/language development. An influential variable predictive of development was the period of time which the child had been in the centre. This highlighted the importance of the stability of child care arrangements. Child care quality features which had most influence were global ratings of the qualities of the program environment. However, results need to be interpreted cautiously as the explained variance in the predictive models developed was low. The results of these studies are discussed in terms of the implications for practice and future research. Considerations for an expanded view of ecological approaches to child care research are outlined. Issues discussed include the need to generate child care research which is relevant to social policy development, the implications of market driven policies for child care services, professionalism and professionalisation of child care work, and the need to reconceptualise child care research when the goal is to develop greater theoretical understanding about child care environments and developmental processes.

A collaborative approach to home care delivery for older clients: Perspectives of home care providers

A collaborative approach to home care (HC) delivery for older clients has taken centre stage (Nies, 2006). In Finland, public home help and home health care services have been combined to form the home care unit, whose goal is to provide a collaborative approach to care delivery through cooperation and sharing of responsibilities. In this model, the general practitioner (GP), home care nurses (HCN) and home help workers (HHW) care for shared clients. GPs and HCNs provide health care, such as monitoring of clients’ health status, and HHWs assist with personal care tasks such as dressing, washing and meal preparation. As the needs of older clients are multiple, collaboration is needed as one professional group cannot take sole responsibility (Nies, 2006). This paper reports on a study undertaken to examine home care unit care providers’ perspectives of the collaborative approach to HC delivery for older clients.

Understanding the optimal learning environment in palliative care

The learning experiences of student nurses undertaking clinical placement are reported widely, however little is known about the learning experiences of health professionals undertaking continuing professional development (CPD) in a clinical setting, especially in palliative care. The aim of this study, which was conducted as part of the national evaluation of a professional development program involving clinical attachments with palliative care services (The Program of Experience in the Palliative Approach [PEPA]), was to explore factors influencing the learning experiences of participants over time. Thirteen semi-structured, one-to-one telephone interviews were conducted with five participants throughout their PEPA experience. The analysis was informed by the traditions of adult, social and psychological learning theories and relevant literature. The participants' learning was enhanced by engaging interactively with host site staff and patients, and by the validation of their personal and professional life experiences together with the reciprocation of their knowledge with host site staff. Self-directed learning strategies maximised the participants' learning outcomes. Inclusion in team activities aided the participants to feel accepted within the host site. Personal interactions with host site staff and patients shaped this social/cultural environment of the host site. Optimal learning was promoted when participants were actively engaged, felt accepted and supported by, and experienced positive interpersonal interactions with, the host site staff.

Using a design led disruptive innovation approach to develop new services : practising innovation in times of discontinuity

Organisations face increasing competition from new firms in emerging markets and their past superior products may no longer provide competitive advantage in markets based on different cost and value differentials. A shift in design practices from product solutions to health services which are accessible and affordable by all is required. This paper explores a design led approach to innovation to assist medical device companies develop new services and experiences and reshape their notions of the nature, development and deployment of health care services. This approach uses design tools and methodologies that are grounded in the authentic understandings of stakeholder experiences, to assist an organisation create a vision of likely future health care scenarios. Through this process, organisations can explore the complexities in the delivery of future health care services in new and emerging markets allowing them to tailor product and service solutions which focus on being accessible and affordable by all. The industry based case study for the design of health services in carried out in emerging economies. The contribution of this work in advancing research into design innovation and future research directions are also presented.

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

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

The Australian Palliative Care Outcomes Collaboration (PCOC) : measuring the quality and outcomes of palliative care on a routine basis

Australia is leading the way in establishing a national system (the Palliative Care Outcomes Collaboration – PCOC) to measure the outcomes and quality of specialist palliative care services and to benchmark services across the country. This article reports on analysis of data collected routinely at point-of-care on 5939 patients treated by the first fifty one services that voluntarily joined PCOC. By March 2009, 111 services have agreed to join PCOC, representing more than 70% of services and more than 80% of specialist palliative care patients nationally. All states and territories are involved in this unique process that has involved extensive consultation and infrastructure and close collaboration between health services and researchers. The challenges of dealing with wide variation in outcomes and practice and the progress achieved to date are described. PCOC is aiming to improve understanding of the reasons for variations in clinical outcomes between specialist palliative care patients and differences in service outcomes as a critical step in an ongoing process to improve both service quality and patient outcomes. What is known about the topic? Governments internationally are grappling with how best to provide care for people with life limiting illnesses and how best to measure the outcomes and quality of that care. There is little international evidence on how to measure the quality and outcomes of palliative care on a routine basis. What does this paper add? The Palliative Care Outcomes Collaboration (PCOC) is the first effort internationally to measure the outcomes and quality of specialist palliative care services and to benchmark services on a national basis through an independent third party. What are the implications for practitioners? If outcomes and quality are to be measured on a consistent national basis, standard clinical assessment tools that are used as part of everyday clinical practice are necessary.

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

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

Transition to day care for older people in Taiwan : a grounded theory study

Adult day care centres provide a means whereby frail or disabled older people can remain living at home particularly when their family care-givers engage in waged work. In Taiwan, adult day care services appear to meet the cultural needs of both older people and their families for whom filial care is vital. Little research attention has been paid to the use of day care services in Taiwan, the uptake rate of which is low. This grounded theory study explored the ways in which older people and family care-givers construct meanings around the use of day care services in Taiwan. Forty-four semi-structured interviews were undertaken with older people, care-givers and day care centre managers. The findings from grounded theory data analysis bring focus to the assumptions and structures that underpin the process of transition to day care services. A key feature of this process is the reconstruction of personal identity as both the older people and family care-givers work to make sense of the relationship between the self and a changing social structure. Reconstructing identity in a shifting world is the core category of the study and reflects a process of reframing whereby older people came to new definitions of social responsibility and independence within the context of the day care centre. Similarly, the family care-givers actively reformulated the concept of filial piety as they interacted with and interpreted the changes in economic and social conditions in Taiwan.