Consumer-directed Care Research Articles

Let Us Keep the Emergency Department Safe: National Disability Insurance Scheme Supports Workers’ Experiences When Supporting People with Psychosocial Disability in the Emergency Department

Internationally, community healthcare is provided by personal health budgets or personalised schemes as part of a consumer-directed care emphasis. Although the introduction of a personalised scheme in Australia has improved the lives of many, people with psychosocial disability (PSD) and their families have experienced many challenges with service integration. Six focus groups with 17 National Disability Insurance Scheme (NDIS) support workers were conducted between June and November 2022. Participants were asked semistructured questions about their engagement with emergency department (ED) clinicians when presenting with a person with PSD and NDIS plan. They were also asked how they contribute to service integration to improve communication practices between the two services. A qualitative, descriptive thematic analysis approach was used. Results indicate there is a need for improved service integration pathways between the ED and NDIS services. The thematic analyses identified five main themes: the ED is harmful and not safe, but nowhere else to go; make the ED safe; further training for ED staff; improving communication across services; and alternatives to the ED. This study reports NDIS support worker’s experience when supporting a person they are caring for in the ED. NDIS support workers have an understanding of the needs of the people they care for;their wisdom can contribute greatly to ED clinical responses in crisis care. Recommendations are offered to assist with service integration between the two systems.

My Voice, My Choice: A systematic review of the literature relating to consumer-directed care in Australia

Objectives and importance of study: The objective of this systematic review of the literature was to examine the evidence relating to consumer-directed care (CDC) in the aged care environment. CDC entails providing individuals with the option of choice and flexibility in their care, to empower aged care recipients with autonomous decisions over their healthcare choices. Additionally, the researchers found evidence relating to the vulnerability of users of aged care services and the lack of understanding towards a true consumer-oriented approach which was highlighted during the Royal Commission into Aged Care Safety and Quality. Study type and method: The research team used the PRISMA Method to review the available literature systematically. This qualitative review of the literature on consumer choice in the aged and social care sectors assessed sixteen high-quality research papers and identified themes that emerged to promote authentic consumer voice in aged care services. These articles provided insight into what aged care providers require to increase transparency and facilitate effective, meaningful consumer choice. Results: Six themes emerged from the literature reviewed: Informed Choice, See Me Hear Me, Funding My Choices, My Choice My Way, Policy, and Know Me, Include Me. The authors found significant challenges to authentic consumer voice in terms of reliable information, complex, inflexible service provision, and a trusted and skilled carer workforce. Conclusion: Authentic consumer choice requires collaboratively designed care plans with consumers, integrating their care-related preferences and values. Providers who have embraced CDC principles, and innovative practices have enhanced person-centred care, and consumer experience and autonomy. Cultivating inclusive, transparent, and collaborative environments to empower older Australians to shape and control their care provision and wellbeing is a key challenge for providers.

Risk of Hospitalization Associated with Use of Consumer-Directed Attendant Care

ABSTRACT Older people with disabilities living independently often use attendant care, also known as Personal Assistive Services (PAS). The aides providing care can come from a home health agency contracted by the state Medicaid authority, known as agency-directed PAS, or the Medicaid recipient can receive a monthly budget and arrange their own care, known as consumer-directed care. Consumer-directed care is hypothesized to have some possible benefits but could also potentially lead to health hazards. This study examined whether people receiving consumer-directed PAS versus people receiving agency-directed PAS faced a higher risk of hospitalization. The data for this study came from Pennsylvania Medicaid claims, enrollment files, standardized assessments, and hospitalization claims from Medicare and Medicaid. The analysis used two-stage least square regression, with the percentage of people in a county using consumer-directed care as an instrument for the type of PAS. People using consumer-directed care did not have a statistically significant difference in risk for hospitalization compared to people using agency-directed PAS (p = .976). Risk of hospitalization was not different for people using consumer-directed care compared to people using agency-directed care.

Utilizing Consumer-Directed Care Among Older Adults: Identifying Barriers From Behavioral Economics Perspectives.

Consumer-directed Care (CDC) empowers older people to flexibly arrange services and enhances their well-being. Prior studies have suggested that limited attention and hassle costs are major demand-side barriers to using CDC. However, many other psychosocial factors were unexplored. In this study, we explore associations between CDC utilization and a wider range of psychosocial factors based on behavioral economics theories. A cross-sectional telephone survey of older persons (or family members that represent them) was conducted in Guangzhou, China in 2021. We adopted a two-stage sampling method based on administrative records and analyzed the data using multivariate logistic models. Procedural literacy, hassle costs, and social norms regarding CDC were associated with using CDC. The findings reveal nuances in the decision-making process, and people are not unboundedly rational in making care-related decisions. Policymakers could employ cost-effective tools to facilitate CDC utilization and optimize resources to address the most crucial service barriers.

Developing an Operationalized Framework for Comparing Consumer-Directed Care for Older Adults: Evidence from Expert Survey and Cross-National Comparison

ABSTRACT Consumer-directed care (CDC) programs for older people aim to optimize health outcomes by offering clients control and flexibility regarding service arrangements. However, policy design features may differ due to heterogenous sociostructural systems. By operationalizing a framework with three dimensions of CDC, i.e. control and direct services, variety of service options, and information and support, we analyzed how countries vary in their policy designs to achieve consumer direction. Using an expert survey (n = 20) and cross-national document analysis, we analyzed 12 CDC programs from seven selected countries: the United States, the United Kingdom, Germany, the Netherlands, China, Australia, and Spain. Among the three dimensions, CDC programs placed more emphasis on and displayed more homogenous performance of policy designs that achieve consumer direction in the dimension of control and direct services, while less emphasis was placed on and more heterogenous performance displayed in the dimensions of variety of service options and information and support. We offer a systematically operationalized framework to investigate CDC policy designs. Findings advance our understanding of CDC policy features from a cross-national perspective. Policymakers could incorporate these findings to empower older people in their respective societies.

Heuristics, Biases, and Decisions in Resource Allocation for Home Care Packages under Consumer Directed Care: A Systematic Review and Thematic Synthesis

Consumer-directed care (CDC) is a policy solution for quality deficiencies in aged care where seniors accessing care services are empowered with full choice and flexibility over their service packages. Various programs have been developed using this policy approach around the world, and implementation has invoked a mixture of responses. While consumer organisations welcome a policy direction providing additional choice, there is a concern that this policy complicates the decision-making process, leading people to rely on “rules of thumb” (heuristics) that may not reflect their best interests. Behavioural science provides a lens for looking at heuristics and biases that may occur during complex decision making, particularly as people age. Objective. To explore the presence and influence of heuristics and biases on the decision-making processes of older people receiving home care services under a CDC model. Method. Qualitative systematic review involving systematic searching of PubMed, MEDLINE via Ovid, Embase via Elsevier, CINAHL via Ebsco, PsycINFO via Ovid, Web of Science, Scopus, and EconLit, from inception until 14th April 2022 was undertaken. Identified articles were deduplicated, screened, and extracted for information relevant to the research question using PRISMA guidelines. Data extraction considered descriptive data and metadata including study type, participants, overall objectives, chosen methodologies, and their relationship to the research question. The variety of study types prompted a thematic synthesis to achieve greater comprehension of the existing knowledge base. Results. Descriptive categories were analysed to reveal five themes relevant to the presence and influence of heuristics and biases in decisions made by older people when allocating home care resources. Principally, CDC is implemented to afford autonomy but is complicated by the decision-making environment. Choice and decision making are both specific to the individual, and the processes employed for decision making vary over the life-course. Decision quality can be improved through the identification and mitigation of complicating factors. More research is needed to understand how modifications can assist decision making and improve health outcomes.

Ten health policy challenges for the next 10 years.

Health policies and associated research initiatives are constantly evolving and changing. In recent years, there has been a dizzying increase in research on emerging topics such as the implications of changing public and private health payment models, the global impact of pandemics, novel initiatives to tackle the persistence of health inequities, broad efforts to reduce the impact of climate change, the emergence of novel technologies such as whole-genome sequencing and artificial intelligence, and the increase in consumer-directed care. This evolution demands future-thinking research to meet the needs of policymakers in translating science into policy. In this paper, the Health Affairs Scholar editorial team describes "ten health policy challenges for the next 10 years." Each of the ten assertions describes the challenges and steps that can be taken to address those challenges. We focus on issues that are traditionally studied by health services researchers such as cost, access, and quality, but then examine emerging and intersectional topics: equity, income, and justice; technology, pharmaceuticals, markets, and innovation; population health; and global health.

Experience of a demand-side subsidy scheme for residential long-term care: perspectives of elderly and their carers

BackgroundVouchers, which are demand-side subsidies to targeted groups, are a type of consumer-led near-cash social transfer for specified benefits that have been used in education, health and other sectors. To provide better access to residential care services and an additional choice for elderly people in need, a novel means-tested residential care service voucher has been introduced in Hong Kong for elderly people to purchase places in the private sector to enable consumer-directed care. The objectives of this paper are to analyze the perspectives of voucher users and their carers toward the voucher scheme and to identify key elements in the design that will contribute to meeting the scheme’s objectives.MethodsAn exploratory sequential mixed method design was adopted with initial explorative qualitative data collection of the perspectives of elderly people and their carers (Phase 1), which informed the design of the subsequent questionnaire survey (Phase 2). Thirty carers in 5 focus groups and 20 individual interviews with elderly people were conducted between April and May 2018. A total of 401 respondents (373 carers and 28 elderly people) completed the survey questionnaire. Findings from both phases were integrated both narratively and via a joint display.ResultsFive key themes summarized the features in two main elements of the design and implementation of the voucher scheme: awareness, meaning that inadequate knowledge and understanding of voucher schemes hinder participation; service needs and types, indicating that the urgent need for residential care services is the key reason for participation; shared responsibility, meaning that a high copayment level discourages participation; choice and flexibility, reflecting appreciation of the additional choices provided by voucher schemes although the availability of residential care beds limits choices; and service quality, indicating mixed perceptions of service quality and the impact of the voucher scheme. Voucher users believe that the voucher scheme is more helpful for relieving the financial burden (98.7%), reducing carers’ stress (97.0%) and reducing the waiting time for subsidized homes for elderly people (89.0%) than for increasing choice and flexibility (78.1%) and improving service quality (62.1%).ConclusionsThis study demonstrates how the design of a voucher scheme affects its take-up by targeted beneficiaries. When a voucher scheme is implemented in a long-term care system, it must consider the congruence with existing policies in long-term care provision and financing. The voucher scheme in Hong Kong has been able to generate the utilization of nonsubsidized places in homes for elderly people that were underutilized, but its effectiveness is limited by inadequate knowledge and understanding of the voucher scheme and the availability of residential care places. Giving the purchasing power and choice of providers to beneficiaries has the potential to enhance the quality of services, which will contribute to meeting the objectives. The study findings carry significant implications for long-term care policies and provide insights into the key features of the voucher scheme for residential care services and how to best design and implement a voucher scheme for elderly people in the context of policy objectives and a long-term care policy.

A Preliminary Exploration of the Impact of Aged Care Reforms on the Governance of Two Australian Residential Care Facilities.

Objectives: Australia's ongoing aged care reforms have re-focused service provisions from a provider-driven policy approach to a consumer-directed care focus and redirected residential care subsidies. This study aimed (i) to identify the experiences and perceptions of people involved in the governance of residential care facilities about their management of changes due to new accreditation requirements and funding mechanisms, and (ii) to describe their strategic responses to aged care reform changes. Methods: A qualitative description design used interviews exploring perspectives of Board Chairs, Board Directors, and Chief Executive Officers of two NSW-based residential care organizations. Thematic analysis was conducted of interview transcripts. Results: Four key themes emerged from the data: (1) Business strategies and challenges under reform conditions including the need for business diversification and new approaches, (2) costs incurred by the reforms such as compliance with accreditation requirements, (3) workforce demands: for example maintaining staffing levels and training needs, and (4) expectations about maintaining quality of care. Discussion: Changes were necessary in business models for facilities to remain sustainable, meet staffing needs, and continue to provide services in a complex, changing fiscal environment. These included generating revenue streams other than government subsidies, better clarity about government support and establishing partnerships.

Towards Co-Design in Delivering Assistive Technology Interventions: Reconsidering Roles for Consumers, Allied Health Practitioners, and the Support Workforce.

A complexity of factors, from health and technology innovations to policy redesign to achieve consumer-directed care, are impacting traditional roles for Australian allied health practitioners (AHPs). This pilot study considers roles for AHPs in relation to assistive technology (AT) interventions. Articulating 'who does what' may serve a number of purposes including de-professionalization of the discourse; better utilization of support networks and workforces; and alignment with contemporary policy. Yet, a suitable framework to assist with collaborative AT implementation between relevant stakeholders was not identified within the existing literature. This research aimed to develop and pilot an AT collaboration tool which enables AHPs, consumers, their support networks and the support workforce, to navigate policy redesign toward ethical consumer-directed implementation of AT interventions. An AT collaboration tool was developed based upon practice-based knowledge, relevant regulatory and practice evidence and identifies relevant stakeholders, AT service steps and roles, and quality indicators to support competent practice. The tool was piloted in four separate and diverse practice analyses of AT interventions (custom prosthetics, home enteral nutrition, communication devices, and vehicle modifications) considering four allied health professions (prosthetics and orthotics, dietetics, speech pathology, occupational therapy). Pilot testing of the tool supports the feasibility of re-framing AT provision using competency-based and risk-informed approaches and enabling more inclusive roles for consumers and the support workforce. Further testing of the tool is indicated, followed by strategic actions for uptake by individuals, professions and policymakers. The AT collaboration tool has potential to enable AHPs to fulfil ethical obligations for consumer-centered practice, and to facilitate consumer choice, both in Australia and internationally.

The experience of structural burden for culturally and linguistically diverse family carers of people living with dementia in Australia.

Evidence suggests that family carers of culturally and linguistically diverse (CALD) people living with dementia experience higher stress and unmet need than the general Australian population. These disparities are often framed as the result of CALD communities failing to seek formal support. Challenging this, we draw on the concept of 'structural burden' to explore how the complexity of health and aged systems contribute to the burden that CALD carers experience. We conducted semi-structured interviews with 104 family carers for CALD people with dementia in Australia,followed by thematic analysis of transcripts. Additional to structural burdens encountered by the general older population, CALD carers faced challenges understanding Australia's Anglo-centric aged care system, locating culturally appropriate care and were required to translate the languages and operations of health and aged care systems into terms their family members understood. This burden was mitigated by the presence of ethno-specific organisations and other navigation support. Australia's aged care system has moved towards centralised governance and consumer-directed care provision. This system involves a confusing array of different programmes and levels, bureaucratic applications and long waiting times. Carers' encounters with these systems demonstrates how some CALD people are being left behind by the current aged care system. While ethno-specific services can reduce this burden, not all CALD groups are represented. Consequently, improving access to dementia care among CALD populations requires entry point and navigation support that is culturally appropriate and linguistically accessible.

Real World Challenges in Delivering Consumer Directed Care to Enhance Nursing Home Residents’ Well Being

ABSTRACT Objectives The aim of this study was to use the ADKAR model of organizational change to gain an understanding of why a training program designed to equip staff with the skills to provide a Consumer Directed Care (CDC) model in nursing homes produced little change in the outcome variables, including resident quality of life. Methods We collected and analyzed various forms of site-specific data including CDC implementation plans developed by staff trained in 21 facilities, and their training facilitators’ records. Results Staff trained in the principles of CDC produced well-developed, facility-specific plans to introduce a CDC model of care, yet they faced many barriers to the implementation of these plans. These barriers were spread across multiple stages of the ADKAR model and included staff turnover (including managers), lack of engagement by management, lack of or inconsistent availability of a CDC champion, and disruptions to the training program. Conclusions We identified several organizational factors contributing to the failure of the training program to produce anticipated changes. Clinical Implications Without organizational commitment and full management support, attempts to implement CDC training programs are likely to fail, leading to negative consequences for residents’ autonomy and control over how they are cared for.

Perspectives and practices associated with consumer-directed care in Australia: Synergies and tensions in supporting planning and delivery of home care for older people with dementia.

This study used a qualitative, cross-sectional design to address a gap in understanding the perspectives and practices of care planners and case managers in supporting consumer- directed care (CDC) for community dwelling people living with dementia. Semi-structured telephone interviews were conducted with a convenience sample of n=16 planners and managers from seven providers of the Australian home care packages (HCP) program in NSW (Australia). All interviewees described the aspirations of supporting choice within CDC as synergistic with their values and with person-centred care. Some described new flexibilities within the more open-ended planning conversations enabled by CDC. However, most acknowledged their capacity to enable choice for clients with dementia was limited by the capped care budgets, as well as the skills and time needed to support choice and decision- making. Organisational practice changes associated with the shift to a market-based system were also perceived as limiting the capacity to support choices. Reducing centralised systems, increasing individual budgets and improving staff capacity to support decision-making by people with dementia may help to improve this situation. However, results suggest a deeper need to re-evaluate whether the CDC model is the most appropriate for supporting the rising numbers of people with dementia to age well in place.

Consumer Directed Care and Resident Quality of Life: How Leadership and Organizational Factors Impact on Success

ABSTRACT Previous studies have demonstrated inconsistency in the effectiveness of staff training programs in consumer directed care (CDC) as a means of enhancing the quality of life (QoL) of residents. The aim of this study was to investigate why this might be the case. We analyzed disaggregated cluster-by-cluster resident QoL outcomes after nursing home staff completed a CDC training program. In total, 33 nursing homes (11 clusters) participated in the study. As with previous studies, the outcomes across nursing homes were inconsistent – QoL improved at some sites but at many it remained stable or declined. Analysis of facilitator notes from the most and least successful clusters indicated that a lack of organizational support, for both the training and subsequent practice of CDC, was potentially the key barrier to effective implementation of training and so improvement in resident QoL. These findings demonstrate that all levels of aged care organizations – on the floor staff, managers and senior staff – need to fully support a CDC model of care to optimize outcomes for residents. Staff require training in CDC as well as long-term culture change within the nursing home so that training can be translated into practice.

An evaluation of a consumer directed care training program for nursing home staff

ObjectivesThis study evaluated a training program to support the delivery of consumer directed care (CDC). It was hypothesized that both interventions, compared to the control condition, would demonstrate increased levels of CDC in nursing homes, increased staff practice of CDC, and improved resident QoL. The training plus support group was expected to show greater gains, compared to the training only group. Materials and methodsIn a cluster RCT design, 33 nursing homes were randomly allocated to one of three conditions: training plus support, training only, and care as usual. Outcome measures included level of CDC within each home, staff practice of CDC, and resident QoL. Results and discussionHypotheses for this study were partially supported. Nursing homes became more CDC-oriented but with minimal changes in staff practice of CDC. Resident QoL also demonstrated limited change. The findings are discussed in terms of organizational barriers to change within nursing homes.

Policy Design and Consumer Direction: Cross-country Comparisons on Consumer-directed Care Programs

Objectives: The consumer-directed care (CDC) program aims to maximize health outcomes by offering older adults more control, choice, and flexibility over the care services they received. However, countries may operate CDC programs in different ways based on heterogenous sociostructural systems. We proposed a comparative framework to evaluate three dimensions of CDC—control and direct services, variety of service options, and information and support—and analyzed how countries varied in their policy design to achieve consumer direction. Methods: Using cross-national document analysis, we analyzed eleven CDC programs from seven selected countries (Netherlands, United States (US), United Kingdom (UK), Germany, China, Australia, and Spain) with five CDC care regimes. A total of fourteen indicators capturing three dimensions of CDC programs was developed. We further used these indicators to evaluate and compare similarities and differences of policy features across countries using descriptive statistics and graphical approaches. Results: CDC programs in the Netherlands, Arkansas, and the UK ranked at the top in consumer direction. All countries except Germany employed a “service-based” principle in determination of service type. Training care workers was in the most widespread use to assure quality of care. Merely the UK and Germany integrated CDC and conventional agency care without restrictions. Representative with relevant support was only available in the UK and Netherlands. Discussion and Implication: CDC models involve multi-faced aspects, rather than dichotomies and discrete entities. Implications include the need for a systematic reflection with our developed framework and enriching variety of service options to promote consumer direction.

Perspectives of operational staff working in residential care and aged care reforms.

Australia is undergoing major aged care reforms, changing from the previous service provider-driven approach to consumer-directed care principles. In residential aged care, this has resulted in a significant reduction in government funding in order to support reform initiatives in home and community-based care. There has been limited research on the impact of structural aspects of the reforms such as the effect of changes in funding focus. Using a qualitative descriptive research methodology, this study explores the impact of the reforms on staff at various levels of operational responsibility in residential aged care. Issues identified by participants centered on the capacity to deliver care in three areas, the impact of funding reduction, challenges in meeting increasingly complex needs of residents and their families, and new requirements for care roles within current limitations. This paper provides an insight into how and why operational issues have informed the findings of the current Australian Royal Commission into Aged Care Quality and Safety. It identifies areas of support for the aged care workforce that are crucial in fulfilling consumer-focused care delivery.

The regional effect of the consumer directed care model for older people in Australia

Evaluation of Consumer Directed Care (CDC), an internationally recognized means to promote autonomy and choices in the delivery of health in community aged care, is growing, but little is known about the spatial implications of such policy. With differences in the utilisation of home care services across locations, the introduction of a national CDC program may affect different regions to different extents. This paper explores the regional effect of the CDC introduction on older Australians' mental health. We analyse data on 1780 individuals aged 65 years and over, from 11 waves (2007–2017) of the Household, Income and Labour Dynamics in Australia (HILDA) Survey. We find that older adults’ mental health is worse after the introduction of the CDC in 2013. Moreover, older adults, who lived in the areas with higher utilisation of Home Care Packages, experienced worse mental stress than the same individuals who lived in the areas with lower utilisation of home care services. This pattern may reflect regional differences in Government funding, community aged care waiting time and provider service fees. Therefore, it is important for health policies that aim to promote choices to older consumers, such as CDC, to consider regional differences in its implementation, to minimise unwarranted variations in the population health and well-being.

Has consumer-directed care improved the quality of life of older Australians? An exploratory empirical assessment.

To assess the impact of a Consumer Directed Care (CDC) model of service delivery on the quality of life of older people receiving home care packages. Quality of life was assessed using validated instruments. The relationship between quality of life and length of time exposed to CDC was examined using descriptive statistical and multivariate regression analyses. Consenting older adults (n=150) in receipt of home care packages participated. Quality of life and capability scores were higher for older people in receipt of a CDC model of service delivery for <12months compared to those receiving the model of care for longer, although this difference was not statistically significant. However, older people with more recent exposure to CDC indicated a stronger capability to do things that made them feel valued. Extended longitudinal follow-up is needed to facilitate a detailed examination of the relationship between the evolution of CDC and its longer-term influences on quality of life.

Person-centred Australian residential aged care services: how well do actions match the claims?

AbstractRecent inquiries into residential aged care services, including the 2018–2019 Australian Royal Commission into Aged Care Quality and Safety, have informed revisions to the 2019 Australian Aged Care Quality Standards. Reforms to the Standards include a greater focus on person-centred services, consumer-directed care and authentic participation in decision-making on service provision by residents and their family members. In respect of person-centred services, the revised Standards reflect the four elements of the ‘Valuing, Individualised Care, Personal Perspective, Social Environment’ (or VIPS) framework for quality aged (social) care services in the United Kingdom. This qualitative study investigated whether the quality of services in a convenience sample of seven Australian aged care homes, which claimed to be person-centred, aligned with the four elements and 24 indicators of the VIPS framework. Data were obtained via semi-structured interviews with a volunteer sample of people associated with these seven aged care homes: 12 residents, 15 family members and 18 staff members in various roles. Data were analysed deductively with a priori reference to the 24 VIPS framework indicators, achieving data saturation for four common themes which indicated more person-centredness and ten common themes indicating less person-centredness. Only two of seven homes adhered to the four elements and 24 indicators of the VIPS framework across most service offerings. The remaining five homes offered some aspects of a person-centred service. The study findings provide insight to the factors which support and hamper the implementation of the VIPS-informed indicators of a person-centred aged care service and, therefore, what is needed to help meet person-centred requirements as outlined in the 2019 Australian Aged Care Quality Standards.