Long-term Care Providers Research Articles

Toward a Fit-for-purpose Policy Architecture on Long-term Care in Sub-Saharan Africa: Impasse and a Research Agenda to Overcome it

Context: Perspectives from sub-Saharan Africa (SSA) have featured little in the expanding global debate on long-term care (LTC) policy thus far – despite SSA countries’ embrace of global commitments on the development of equitable and sustainable LTC systems. Objective: Building on insights derived from ongoing analyses of relevant literature and policy frameworks, stakeholder engagement, as well as personal experience, this commentary examines the lack of a fit-forpurpose policy architecture on LTC in SSA at both regional and national levels. Method: The analysis assesses the nature and drivers of this policy impasse and pinpoints an agenda for research to help overcome it. Findings: LTC in SSA is provided overwhelmingly by families, with available evidence pointing to inequitably distributed deficits in the quality of such care and negative impacts on unpaid family carers. Governments have forged a spectrum of frameworks that speak to questions of LTC. Yet fit-for-purpose provisions that consider a need for expanded organized care and support provision to reduce quality deficits and costs on carers are widely lacking. The impasse may be rooted in a lack of awareness of relevant evidence, as well as in political views that resist organized care provision as an imposed western model that counters African values and as a distraction from priority child-, youth- and gender-focused development agendas. A concerted research effort that examines the compatibility of organized LTC provision with African family norms and its relevance for broader social and economic development in SSA is required to address the policy impasse. Limitations: This overview is an exploration of the agenda, leading to suggestions for ways forward, and not an empirical research report.

Efficiency changes in long-term care in OECD countries: A non-parametric Malmquist Index approach

Future demographic projections indicate that long-term care (LTC) demand will put significant pressures on the long-term sustainability of public finances. Efficiency gains could potentially compensate for increasing LTC expenditures. Nevertheless, among the factors that drive LTC expenditures, efficiency, or productivity discussions have received little attention. This paper provides the first analysis of the efficiency levels of LTC for a subset of OECD countries. In doing so, the study adopts a non-parametric approach and performs a Data Envelopment Analysis (DEA). The results of the DEA show that average efficiency scores have a slight tendency to increase. There was a 0.1% increase in productivity in the provision of LTC between 2009 and 2014, which mainly resulted from an increase in technological change. However, the slight increase in efficiency is insufficient to offset fiscal pressures led by the increasing number of LTC beneficiaries and amount spent on LTC. The second stage Tobit analysis results further indicate that the productivity of LTC provision does not differ across countries with different public LTC financing arrangements.

Confirmatory analysis of a health state classification system for people living with dementia: a qualitative approach.

Objectives This paper aims to confirm the content validity of the domains identified during the development of the Alzheimer’s disease – five dimensions (AD-5D) algorithm for the quality of life – Alzheimer’s disease (QOL-AD) and to identify the rationale for stated quality of life preferences. Methods Focus groups were conducted to elicit the priorities for quality of life in dementia from three perspectives: the person with dementia; family caregivers; and the community. Participants were recruited through industry research partners (long-term care providers) based on knowledge of their experience with dementia. Three focus groups were conducted – one each in Brisbane, Sydney and Adelaide, Australia – between November 2016 and February 2017. Each focus group included participants providing a different perspective on dementia – people with dementia ( n = 3), caregivers ( n = 9) and general community members or relatives of residents of a long-term care facility ( n = 10), although some groups contained one participant with a different perspective. The focus groups were used to validate the AD-5D domains and examine quality of life preferences across the three perspectives. Thematic analysis was used to identify the priorities underlying preference selection. Results All activities affecting the quality of life for people with dementia could be mapped to one of the five AD-5D domains: memory, mood, physical health, living situation and ability to do things for fun. The domains considered most important for quality of life differed between people with dementia, their caregivers and members of the community, with memory the least important domain for all three groups. The rationale for priorities also varied between groups. Conclusions This study confirmed the content validity of the selection of the AD-5D domains and identified multiple differences in the reasons behind stated priorities for quality of life for people with dementia, their caregivers and community members.

Cure is not enough! Why it is time to act and close the gap

Good news: Survival rates in childhood cancer have increased from 20% up to over 80% in Europe, depending on cancer type and country. Not so good news: This great success comes with the price that up to 60 to 70% of childhood cancer survivors suffer from cancer- and treatment-related long-term effects that need life-long follow-up care. Bad news: transition from paediatric health care to adult health care still poses a great problem for childhood cancer survivors due to the lack of adequate long-term care structures for adult survivors of childhood cancer. Ongoing initiatives and projects driven forward jointly by survivors, parents and health care professionals tackle this gap: Childhood Cancer International Europe (CCI-E) and its Survivors Network (CCI-ESN), the Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer (PanCare) and the European Society for Paediatric Oncology (SIOP Europe) are working on and advocating for better long-term follow-up care structures across Europe. Three ongoing best practice projects are presented—each reflecting one important element in the delivery and provision of comprehensive long-term follow-up care: The PanCareFollowUp Project, the Survivorship-Passport and the ZONE-project. The Childhood Cancer International Europe Survivors Network call for action: We need the support of politicians and our health care systems to make sure that every single survivor gets the long-term care that they need. So #RaiseYourHands4Survivors and help us close the gap!

Seven Challenges Assisted Living Must Get Right

Seven Challenges Assisted Living Must Get Right

What matters to people with chronic conditions when accessing care in Australian general practice? A qualitative study of patient, carer, and provider perspectives

BackgroundResearch underpinning the patient experience of people with chronic conditions in Australian general practice is not well developed. We aimed to ascertain the perspectives of key stakeholders on aspects of patient experience, more specifically with regards to accessing general practice in Australia.MethodsUsing a qualitative design, semi-structured interviews were conducted by telephone and face-to-face with people living with one or more chronic conditions, informal carers, and primary care providers between October 2016 and October 2017. Participants were recruited and selected from three demographically representative primary health networks across Sydney, Australia. Interview transcripts and researcher’s reflective fieldnotes were coded and analyzed for key themes of access. Analysis and interpretation of data were guided by Levesque’s model of access, a conceptual framework to evaluate access broadly and from corresponding patient- and provider-side dimensions.ResultsA total of 40 interviews were included in the analysis. Most participants had attended their general practices for 10 years or more and had regular primary care providers. People with chronic conditions reported access barriers predominantly in their ability to reach services, which were related to illness-related disabilities (limited mobility, chronic pain, fatigue, frailty) and limitations in the availability and accommodation of health services to address patient preferences (unavailability of after-hours services, lack of alternative modes of service delivery). While cost was not a major barrier, we found a lack of clarity in the factors that determined providers’ decisions to waive or reduce costs for some patients and not others.ConclusionsPeople managing chronic conditions with a long-term primary care provider experienced access barriers in general practice, particularly in their ability to physically reach care and to do so on a timely basis. This study has important policy and practice implications, as it highlights patients’ experiences of accessing care and possible areas for improvement to appropriately respond to these experiences. Themes identified may be useful in the design of a patient experience survey tool specific to this population. While it incorporates perspectives from patients, carers and providers, this study could be further strengthened by including perspectives from culturally and linguistically underrepresented patient groups and more carers.

Global Convergence: Aging and Long-Term Care Policy Challenges in the Developing World

ABSTRACTAging around the world poses a global challenge in eldercare. This challenge is particularly felt in low- and middle-income countries (LMICs), where population aging outpaces the development of aged care policies and services. This Perspective highlights the phenomenon of global convergence in several unsettling trends and challenges shared across LMICs. These include the weakening of informal family care systems for the elderly, growing need for formal long-term care of the frail and disabled who can no longer be adequately supported by family members, and mounting pressures for policy responses to tackle these societal challenges. It is argued that policymakers should take a proactive stance. That is, when family care for the elderly falls short and family caregivers are increasingly under strain, the government should step in and step up support to fill in the gap by developing appropriate policies and a continuum of long-term care services that are accessible and affordable for the majority of older people in need. Three general principles are then suggested with regard to long-term care provision, financing, and quality assurance, which transcend national borders and can be used to guide long-term care policymaking across LMICs.

Internal coordination of social security in Spain

This paper introduces the topic of the internal coordination of regional and local social security schemes in Spain. In the field of social security, the constitutional framework imposes different solutions in terms of the division of competences between State and Autonomous Communities, depending on the branch of (public) social protection. In the provision of long-term social care, for instance, both the State and the Autonomous Communities participate. Healthcare services are mainly provided by the Autonomous Communities without prejudice to certain aspects of the role played by the State. Social assistance through cash benefits or social services are exclusively provided by the Autonomous Communities, with the deep participation of local entities, especially in the case of social services. The paper outlines the extent of devolution and decentralisation, and the adjudication of competence and financial arrangements. The final section addresses some specific questions in healthcare, long-term social care and social assistance.

Innovating Long-Term Care Provision in Mediterranean Welfare States: A Comparison Between Italy and Israel

ABSTRACTSocial innovations in long-term care (LTC) may be useful in more effective responses to the challenges of population aging for Western societies. One of the most investigated aspects in this regard is the role of family/informal care and strategies to improve its integration into the formal care system, yielding a more holistic care approach that may enhance opportunities for aging in place. This article reports the findings of a comparative research focusing on the Italian and Israeli LTC systems as representative of the Mediterranean “family-based” care model. To analyze the innovative solutions that have been adopted or are needed to improve LTC provision in these two contexts, focus groups and expert interviews have been carried out in both countries to identify the most relevant challenges and responses to them and to highlight promising policies and strategies to be adopted or up-scaled in the future. These include multidisciplinary case and care management, a stronger connection between prevention and LTC provision, and more systematic recognition of the role and limits of informal caregivers’ contributions.

Golden Age Residential Healthcare: Opportunities in Thailand

As societies around the world experience ageing, the issue of providing required levels of health and social care for elderly people is becoming more urgent. Since governments are unlikely to be able to provide the level of care required without significant increases in taxation levels, there arises a need for private sector responses. This case study considers the provision of long-term residential care for people in Thailand and the business opportunities this provides. It concerns in particular the Golden Age Residential Healthcare facility, which is located in a country which has prioritized the wellness industry as a sector of potential high growth in the economy. Relatively low labour costs combined with good medical education and investment in medical facilities mean Thailand is a potentially important location for elderly healthcare. However, there are some practical and commercial issues to overcome before success can be realized and this case study focuses on these issues.

Exploring the value of social network 'care maps' in the provision of long-term conditions care.

There is renewed attention to the role of social networks as part of person-centred long-term conditions care. We sought to explore the benefits of 'care maps' - a patient-identified social network map of their care community - for health professionals in providing person-centred care. We piloted care maps with 39 patients with long-term conditions in three urban and one rural general practice and two hospital wards. We interviewed the health professionals (n = 39) of these patients about what value, if any, care maps added to patient care. We analysed health professional interview data using thematic analysis to identify common themes. Health professionals all said they learned about their patients as a person-in-context. There was an increased understanding of patients' support networks, synthesising what is known and unknown. Health professionals understood patients' perceptions of health professionals and what really mattered to patients. There was discussion about the therapeutic value of care maps. The maps prompted reflection on practice. Care maps facilitated a broader focus than the clinical presentation. Using care maps may enable health professionals to support self-management rather than feeling responsible for many aspects of care. Care maps had 'social function' for health professionals. They may be a valuable tool for patients and clinicians to bridge the gap between medical treatment and patients' lifeworlds.

Ilgalaikė senyvo amžiaus asmenų globa Lietuvoje: visuomenės nuostatos ir paslaugų teikėjų požiūriai

[straipsnis ir santrauka lietuvių kalba; santrauka anglų kalba]
 Straipsnyje, remiantis gerovės kultūros prieiga ir viešųjų vertybių vadybos idėjomis, analizuojama ir įvertinama ilgalaikės senyvo amžiaus asmenų globos ir slaugos (IGS) problematika Lietuvoje. Pradžioje apžvelgiami Lietuvos mokslininkų darbai, susiję su socialine politika ir IGS, bei apibūdinama šios srities būklė šalyje. Visuomenės nuostatos ir paslaugų teikėjų požiūriai į atsakomybę už rūpinimąsi senyvo amžiaus asmenimis bei į socialinių paslaugų plėtros poreikį IGS srityje interpretuojami kaip kompleksinė reakcija į nepatenkinamą IGS situaciją. Straipsnis baigiamas rekomendacijomis stiprinti viešųjų vertybių vadybos propaguojamus demokratinius svarstymus ir kitus instrumentus, kuriais būtų geriau atliepiama į visų suinteresuotų šalių vertybines nuostatas ir lūkesčius ir būtų geriau derinami jų interesai IGS srityje.

Financial advice for funding later life care: A scoping review of evidence from England

Context: Ageing populations across the world make the provision of long-term care a global challenge. A growing number of people in England are faced with paying for later life social care costs, but do little to plan for these costs in advance. Recent legislation in the form of the Care Act 2014 gave local authorities new responsibilities to provide infor­mation on how people can access independent financial advice on matters relating to care needs. Objectives: This scoping review aimed to identify existing evidence about people’s engagement with financial advice in relation to paying for later life care in England. Methods: Electronic and manual searching identified seventeen papers reporting empirical evidence on the topic, published between 2002 and 2017. Findings: We found evidence of low numbers accessing regulated financial advice. Barriers included limited consumer awareness, preferences for other sources of advice such as friends and family, and poor signposting and refer­rals by local authorities. Most papers indicated that financial advice would be useful in helping people to plan for care costs. Robust research evidence on this topic is limited, with particular gaps in evidence about stakeholders’ experiences of the barriers to, and usefulness of, financial advice about paying for long-term care in later life. Limitations: The paper does not include a formal quality assessment of the included research papers. Our interpreta­tion of study findings was hindered by lack of methodological transparency in some papers and lack of studies focusing specifically on the topic of financial planning for long-term care. Implications: An improved evidence base could assist financial advisers specialising in this area and local authori­ties that are now obliged to signpost people to such advice. With better evidence they would be better placed to explain to members of the public the financial and non-financial implications of obtaining financial advice about care costs. It might also enable those organisations to overcome barriers and facilitate access to appropriate advice.

CE: Caring for Survivors of Hodgkin Lymphoma.

: Hodgkin lymphoma (HL) is a highly curable cancer. Advances in diagnosis and treatment have resulted in excellent cure rates, producing an ever-increasing number of HL survivors who live decades beyond their initial cancer treatment. These survivors, however, are at risk for late effects secondary to the cancer treatments they received years earlier, most notably, subsequent primary cancers, cardiovascular disease, pulmonary toxicity, and endocrine dysfunction. Monitoring and managing such late treatment effects may significantly challenge survivors' long-term health care providers, who may need to take on increased survivorship care. For physicians and nurses working outside of oncology settings, who are increasingly called upon to collaborate with oncologists when caring for HL survivors, understanding the late treatment effects and potential risk factors facing this growing patient population is essential to the provision of comprehensive long-term care. The authors provide an overview of HL, review the most commonly encountered late adverse effects of treatment, and discuss current recommendations for survivor surveillance and screening.

Clinical Practice Guidelines for Quality Palliative Care: The 4th Edition of the NCP Guidelines (TH360)

•Explain the importance of the National Consensus Project (NCP) Clinical Practice Guidelines for Quality Palliative Care, 4th Edition.•Describe the process of developing the 4th edition of the Guidelines.•Differentiate the 4th edition from the previous edition of the Guidelines. Palliative care has expanded into new settings and is being offered by diverse types of organizations, such as health systems, office practices, cancer centers, dialysis units, home health agencies, hospices, long-term care providers and more. Driven by this tremendous innovation within the field, the National Consensus Project (NCP) Clinical Practice Guidelines for Quality Palliative Care were revised and the 4th edition was published fall 2018. The goal of the 4th edition of the Guidelines is to improve access to quality palliative care regardless of setting, diagnosis, prognosis, or age by encouraging organizations and clinicians across the care continuum to integrate palliative care principles and best practices into their routine assessment and care of their patients. The Guidelines formalize and delineate evidence-based processes and practices for the provision of safe and reliable high-quality palliative care for adults and children with serious illness, and their families, in all care settings. Those seeking to develop or expand palliative care can integrate the Guidelines into all aspects of their organization to ensure the highest quality care is provided to all patients and their families. This session will review how the 4th edition of the Guidelines was developed, what changes were made from the 3rd edition, and what the implications are to deliver quality palliative care across settings. In addition, the key findings from the systematic review of the Guidelines that was completed by the RAND Evidence-based Practice Center will be discussed.

Long-term care provision in Europe: Results of a desk research study

Long-term care provision in Europe: Results of a desk research study

Dynamic incentive remuneration design for functional recovery care

This paper considers the dynamic incentive remuneration design for functional recovery care by applying dynamic principal-agent model, where the long-term care provider is formulated as the agent and the long-term care insurer as the principal. The insurer designs a dynamic incentive remuneration strategy to encourage the provider to provide functional recovery care. In particular, the insurer pays the remuneration to the provider based on the health improvement of the insured person at the end of a contract period. In addition, since it is possible that the cost incurred by the provider is not recoverable if less or excessive functional recovery care effort is made, an optimal functional recovery care effort level will be recommended to the provider.

Dynamic incentive remuneration design for functional recovery care

This paper considers the dynamic incentive remuneration design for functional recovery care by applying dynamic principal-agent model, where the long-term care provider is formulated as the agent and the long-term care insurer as the principal. The insurer designs a dynamic incentive remuneration strategy to encourage the provider to provide functional recovery care. In particular, the insurer pays the remuneration to the provider based on the health improvement of the insured person at the end of a contract period. In addition, since it is possible that the cost incurred by the provider is not recoverable if less or excessive functional recovery care effort is made, an optimal functional recovery care effort level will be recommended to the provider.

The establishment and functioning of the PRIMORE (European PRImary care MultiprOfessional REsearcher network) Project.

There is a need for multiprofessional comprehensive studies to better understand the relationship between design and provision of primary care and long-term care and health outcomes. The PRIMORE (PRImary care MultiprOfessional REsearcher network) project aims at bringing together researchers with different backgrounds and from a wide range of professional groups within the fields of primary care research and long-term care research to develop and share knowledge for the benefit of research on municipal health and care services, and eventually, the quality of municipal health and care in Europe. Main activities of the project will be network development, capacity building, providing a platform where multiprofessional primary care research activities can take place and publishing position papers.

Capacity Planning for Ambient Assisted Living

Housing services and utilities represent the highest share of the EU Silver Economy. EU Member States are ageing. The demand for specialised housing for older adults and ambient assisted living technologies is expected to triple in the next 40 years. The ageing population is driving the expenditures of health care (HC) and long-term care (LTC) provision without visible improvement in the quality of life of older adults. Ambient assisted living technologies and ambient intelligence can enable residents to live longer in their own homes and in specialised housing in the community while mitigating the increasing public expenditures for health care and long-term care. We present the results of the survey, how older adults in Slovenia perceive the ambient assisted living housing, where large share of older adults, who are already included in municipality home care programs, want to live after a severe decline in their functional capacities. These results enable us to forecast the dynamics of the expected demand for specialised housing for older adults and the expected directions of the development of specialised housing and the supply networks. We present the multiple decrement model to forecast the dynamics of this demand when developing the silver economy. This structure of demand, we show, depends on the demographic and the income of the older adults. Therefore, it influences the probabilities of transitions in a multiple decrement model for forecasting the dynamics of development of specialised housing with embedded AAL technologies for older adults.