THE NEED OF THE HEALTH AND SOCIAL CARE SERVICES AT HOME FOR PATIENTS HOSPITALIZED IN THE NURSING HOSPITAL

Dementia is considered to be a significant cause of disability and dependency for older people worldwide and it raises difficulties in providing adequate formal and informal assistance. Research on the experience of long-term care (LTC)services for older people with dementia is scarce in Eastern European countries. This study aimed to understand the system of care for older people with dementia from the perspective of health and social care workers providing LTC services in Lithuania. A total of 72 primary health care and social care professionals from public and private institutions in Kaunas city participated in this study. One-to-one interviews were conducted with family physicians, community nurses, psychiatrists, psychiatric nurses, and social workers. A vignette situation of 2 fictitious patients with dementia and their informal caregiver was discussed during the interviews. Data were analyzed using thematic analysis by induction approach. The data revealed 2 main themes: LTC provision trajectory, and three-dimensional relationship perception in realization of LTC activities. LTC provision trajectory reflected activities performed as a response to the described situation embracing formal procedures for the endorsement of LTC needs as well as the range of LTC services. The three-dimensional perception of relationships in LTC services’ implementation reflected the participants’ personal approach toward LTC, relationship with different specialists, and the informal caregiver. Our study revealed the potential of complex measures that could be instrumental for the refinement of the caregiving process. First, a change in the additional care requirements endorsement logic is needed, shifting focus from medical diagnosis to functional abilities assessment. Second, to establish clear procedures for formal cooperation between the health and social care sectors in the trajectory of LTC service provision. Finally, to find an adequate balance between LTC and institutional care by creating a more comprehensive range of LTC services. A more consistent and coordinated delivery of services by both health and social care sectors seems to be an untapped resource for the improvement of the LTC potential.

This dissertation was primarily motivated by the twin phenomena of falling formal long-term care service (LTCS) demand and unrelenting deleterious effects on informal caregivers’ subjective well-being across urban societies. These phenomena run counter to the needs of ageing populations, that presents challenges of a rise in chronic degenerative illnesses and long-term disabilities, and associated crowding at acute treatment facilities. The limited effectiveness of increasing formal LTCS supply to meet these challenges has led to transformation of health care systems in order to influence demand for LTCS. Using three studies, this dissertation investigated the extent to which informal caregivers’ subjective well-being influences the utilization of public long-term health and social care services. Taken together, the results obtained showed that there exist substantial associations between each of caregiver burden, depression and health status and LTCS use. Chapter 2 presented quantitative syntheses of reported research on this topic to-date. Research studies that involved fewer female (than male) informal caregivers reported 86% higher odds of caregivers experiencing higher depression levels associated with LTCS use by patients. I also found that there were unexpectedly few studies that provided quantitative data on this topic despite the many years of research involving informal caregiving in the context of LTCS. Using a longitudinal Singapore sample of stroke survivors and their informal caregivers, Chapter 3 showed that caregiver depression and caregiving burden are concurrent and prospective predictors of LTCS use respectively. After controlling for covariates, I found that caregivers who felt more burdened (found caregiving to be time consuming and difficult) at 3-month post-stroke, and those who were more depressed at 12-month post-stroke tend to have their wards use stroke rehabilitation at 12-month post-stroke. Using the same sample, Chapter 4 showed that caregiver burden, depression and health status are useful indicators of latent caregiver psychosocial distress profiles that differ with regards to LTCS use. After controlling for covariates, I found that non-distressed caregivers at 12-month post-stroke tend to have wards who are stroke rehabilitation service users at the same time point. Theoretically, these results provide partial support for the concept caregiver resilience, and show that explanatory frameworks for LTCS use should include caregiver psychosocial characteristics such as caregiver burden, depression and health status. Practically, these results are evidence of the importance of early and sustained caregiver psychosocial interventions, and provide support for integrated care models that consider the patient-caregiver dyad as the recipient of care.

Health and Social Care Delivery Research (HSDR) Programme is part of the National Institute for Health and Care Research (NIHR). As such, it aims to contribute to the NIHR's mission of improving the health and wealth of the nation by funding evaluative research projects that have the potential to improve the quality, accessibility and organisation of health and social care services by providing useful outputs for decision-makers, staff, service users, academic, and public audiences. More information about the programme can be found on the NIHR website. A logic model is a visual way of showing how an activity, programme or intervention is expected to work and bring about the benefits and changes it intends to achieve. By summarising the core elements, a logic model can be used to support programme planning, implementation, and evaluation. NIHR logic models presentin a linear flow diagramthe key activities, outputs, outcomes and impacts of each funding programme as a series of logical steps.

BackgroundIn order to plan and improve provision of comprehensive care in Huntington’s disease (HD), it is critical to understand the gaps in healthcare and social support services provided to HD patients. Research has described utilization of healthcare services in HD in Europe, however, studies systematically examining needs for healthcare services and social support are lacking. This study aims to identify the level and type of met and unmet needs for health and social care services among patients with HD, and explore associated clinical and socio-demographic factors.MethodsEighty-six patients with a clinical diagnosis of HD living in the South-Eastern region of Norway were recruited. Socio-demographic and clinical characteristics were collected. The Needs and Provision Complexity Scale (NPCS) was used to assess the patients’ needs for healthcare and social services. Functional ability and disease stage was assessed using the UHDRS Functional assessment scales. In order to investigate factors determining the level of total unmet needs and the level of unmet needs for Health and personal care and Social care and support services, multivariate logistic regression models were used.ResultsA high level of unmet needs for health and personal care and social support services were found across all five disease stages, but most marked in disease stage III. The middle phase (disease stage III) and advanced phase (disease stages IV and V) of HD increased odds of having a high level of total unmet needs by 3.5 times and 1.4 times respectively, compared with the early phase (disease stages I and II). Similar results were found for level of unmet needs in the domain Health and personal care. Higher education tended to decrease odds of high level of unmet needs in this domain (OR = 0.48) and increase odds of higher level of unmet needs in the domain of Social care and support (OR = 1.3). Patients reporting needs on their own tended to decrease odds of having unmet needs in Health and personal care (OR = 0.57).ConclusionsNeeds for healthcare and social services in patients with HD should be assessed in a systematic manner, in order to provide adequate comprehensive care during the course of disease.Electronic supplementary materialThe online version of this article (doi:10.1186/s13023-015-0324-8) contains supplementary material, which is available to authorized users.

Background: Ireland has national strategies and policies setting out the importance of integrated care and coordination of care and support between health and social care services, to enable children to get timely and appropriate care and support. Despite Government commitment to a coordinated approach, delivery of care and support to children continues to be inconsistent and fragmented. While children with complex needs are more likely to experience significant gaps and delays in the care and support they need, evidence shows that any child in need of care and support from a health or social care service is at risk of gaps and delays. The Health Information and Quality Authority (HIQA) and the Mental Health Commission (MHC) are the regulatory bodies for health and social care services, and mental health services, in Ireland. To promote and support greater integration and collaboration between health and social care services, HIQA and the MHC worked together to develop national standards for all health and social care services working with children. Throughout the standards development process, we collaborated with children and families with lived experience, and advocates and staff working in health and social care services. Methods: These evidence-based standards cover all health and social care services working with children, including healthcare, disability, mental health and children’s social services. They provide a shared framework for all services and aim to support them to work together in a coordinated and collaborative way to improve the experience and outcomes of children and families. The standards were informed by a literature review, and extensive stakeholder involvement including focus groups with 217 children, young people and families with lived experience, advocates, staff, inspectors, and policy-makers; and 130 responses to two public consultations. An Advisory Group representing key stakeholders and a Children’s Reference Group informed the standards. The Children’s Reference Group comprised of young people and family members with experience of health and social care to ensure active people involvement and engagement in design and implementation of the standards. Their input helped ensure the standards authentically reflected what children should expect from a health and social care service committed to child-centred care. Initiative: This is the first time a set of Irish national standards has been developed focused on the needs of all children across health and social care services. The standards are underpinned by the principles of a children’s rights-based approach, safety and wellbeing, responsiveness, and accountability. Presented in the child’s voice, they articulate what outcomes a child should expect and what a service needs to do to achieve these outcomes. Impact: These standards will help to drive quality, safety, consistency and coordination across health and social care services working with children, as all organisations and services will be operating to one set of consistent national standards. Although an important lever for change, we recognise that services will need tools to support implementation of the standards and we will work with the sector to identify and collaboratively develop relevant tools to support implementation of the standards in day-to-day practice.

Population ageing and longevity are major trends that affect public health and social and health care systems. On average, the older people are, the more they have chronic conditions such as dementia, multimorbidity, and functional and cognitive decline, which require the use of different health care services. This workshop presents topical research findings on older people's health care service use, studied with different research methods and extensive datasets, and discusses the future challenges in providing adequate services for all. Our workshop highlights the diverse care needs and explores the use and the factors behind the use of health care among the older population. Even though the diverse care needs of older people are increasingly recognised, the attention often focuses on older people's services, i.e., the services whose main user groups consist of older people. These usually include home care services, auxiliary services, and long-term care facilities. However, the diverse care needs of older people include the need for different types of health care services, which are used by people in all age groups, such as hospital care, outpatient health care services, and emergency care. Services may not necessarily meet the diverse needs of the older population in a situation where both financial and human resources are limited. From the perspective of service providers, challenges arise when people have multiple or extensive service needs. Coordination and integration of services to promote the use of scarce resources according to multiple needs is challenging. From the perspective of individuals, the service system can appear fragmented, and it can be difficult to access the services that would be most beneficial. To promote adequate and effective health and social care use, we need more information about the factors contributing to different care use profiles. Our objective is to explore how ageing of population and increase in the number of people with chronic conditions is reflected in the use of various health care services and discuss how the needs and use as well as the organisation of health and social care services will develop in the future, as the number of very old people in Europe is estimated to more than double by 2050. We will focus on the use of health care services by different groups, such as people with dementia, people with multimorbidity, and cognitive decline. We will discuss how services should be developed and organised so that, as service needs grow and resources remain scarce, we can provide the older population with adequate services, which are a crucial part of the tasks of the welfare states. We add to the discussion on how different datasets, including registry-based data, could be utilised even more innovatively in research on health care services. The studies presented at the workshop utilise extensive Finnish and Swedish research data, analysed with different and novel statistical methods. Key messages • In terms of the adequacy of health and social care services, it is paramount to acknowledge that population ageing will increase the need for health care services, not only social and long-term care. • To better respond to future care needs with well-coordinated services, we need up-to-date and comprehensive research on the different older health care service user groups.

Commentaries on health services research

IntroductionTo assess how health care professionals outline the management of care and explore which health or social care professionals were involved in the patient's treatment.MethodsA survey with a patient vignette for general practitioners (n = 31) and registered nurses (n = 31) working daily in Finnish health centres located in four cities. Respondents answered structural questions and explained in detail the care process that they tailored for the patient. The care process was examined using content analysis.ResultsA physician–nurse working pair was declared to be in charge of the care process by 27% of respondents, a registered nurse by 9% and a general practitioner by 11%. However, 53% reported that no single person or working pair was in charge of the care process (response rate 72%). The concluding result of the analyses of the presented process was that both treatment practices and the professionals participating in the patient's treatment varied. Collaboration with social services was occasional, and few care processes included referrals to social services.ConclusionFor the patient who needs both health and social care services, the management of care is a challenge. To improve the chances of patients being actively involved in making treatment plans at least three factors need to be addressed. Firstly, a written treatment plan should explicate the care process. Second, collaboration and interaction between health and social care services should be strengthened, and third, a contact person should be named to avoid care gaps in primary health care. Next-step data from patients need to be collected to get their views on care management and compare these with those from general practitioners and registered nurses.

Successful collaboration between professionals working in multisectoral services for people with disabilities requires access to data on the client’s work ability. This study examines work ability data needs, availability, and acquisition in social and health care services and employment services and explores possible differences between these service sectors. A cross-sectional survey was carried out using a self-developed questionnaire based on Choo’s information management process model, the Work Ability House model and previous research on work ability data. The questionnaire was targeted at physicians, nurses, physiotherapists, psychologists, and experts who support the work ability of people with disabilities and who work in primary health care, specialised health care, social services or employment services. The findings indicate that data on clients’ self-perceived health status is more frequently available than data on self-perceived work ability. This variability in data availability exists across professional sectors, highlighting the need for enhanced data management practices related to work ability assessment and support among professionals in social and health care services and employment services. The study underscores the importance of increasing professionals’ willingness to discuss work ability issues with working-age clients, particularly in primary health care and social services. These findings are pertinent in terms of enhancing multisectoral collaboration among professionals who need to comprehensively assess and support the work ability and employment of people with disabilities. Also, the study provides a diverse list of individual pieces of data related to work ability.

PurposeThe aim of this study was to analyse the different barriers to accessing healthcare, social services and long-term care among older adults.MethodsA systematic review and narrative synthesis were conducted to analyse barriers to accessing healthcare, social care and long-term care services among older adults. We followed the PRISMA guidelines. A systematic search was conducted in the PubMed, Scopus, and Web of Science databases.ResultsSeventenn studies were included in the systematic review. Seven articles were systematic reviews, six were scoping reviews, two were literature reviews, one was a rapid review and the last one was an integrative review. The results show that the different types of barriers that hinder access to services for older adults are, on the demand side, socioeconomic factors; and on the supply side, geographical factors. Community factors and the digital divide are on both the supply and demand side. Interaction between barriers should be considered.ConclusionAdequate access to social and health services is crucial for the health and well-being of older adults and to guarantee equity in health. In summary, access to health services for older adults is determined by a heterogeneous interaction of these factors, on both the demand and supply side. Overcoming these barriers requires a comprehensive approach involving the collaboration of governments, healthcare providers, communities and older adults themselves.

Gambling-related harms constitute a significant public health concern, with adverse effects ranging from financial difficulties to mental health disorders. Therefore, people experiencing gambling-related harm may need different kinds of services. While previous studies have examined the prevalence and impacts of problematic gambling, less is known how individuals who gamble use social and health care services. This study examines the social and health care usage between gambling severity groups: (1) non-gambling, (2) recreational, (3) at risk and (4) problem gambling. We aim to examine whether people with risk or problematic gambling use more social and health care services compared to non-gamblers, and what increases the probability to use social and health care services with individuals in different groups. The study used data from the population-based Healthy Finland survey (N = 28,154, 49.3%). Health and social care use were measured with separate questions by asking if participants had used services in the past 12 months (yes/no). Our results show that among individuals with problem gambling, 86% had utilized health care services, and 18% social care services during the past year, which was somewhat higher than among individuals who did not gamble. Among different gambling severity groups, it seemed, that the use of health care services is less common among men, younger individuals, people with excessive alcohol use and among those with higher income. Among individuals with problem gambling and low-risk gambling, the utilization of social services was more common among those with lower income, individuals experiencing psychological distress and long-standing illnesses. These results provide new knowledge on how people with different levels of risk for gambling harm use social and health services, and support to develop social and health services in responding to gambling problems.Key messages• People who experience different levels of risk or problem gambling are already patients in health care, and we need to make sure, that gambling is recognized behind the service use.• With these results we can understand who of those experiencing gambling problems are not in health care services, and develop practices to increase help-seeking.

ABSTRACTLong-term care is available for individuals with functional incapacities. Long-term care includes medical, social, and personal hygiene services, which help to maintain the autonomy of the elderly and allows them to live with dignity in spite of loss of autonomy. This definition provides long-term care services with a goal and a clientele. However, are individuals with functional incapacities first and foremost chronically ill? Should long-term care services be conceptualized as independent from medical care? Provincial government policy documents promote a social model of long-term care which privileges community services as opposed to institutional services. What in fact does this choice imply? To what extent have resources been allocated in accordance with these objectives? A study of these questions based on Canadian data on the relationship between illnesses, disabilities and functional incapacity and data from a historical survey of expenditures in Quebec for hospital care, medical care, institutional long-term care and community services indicates that illnesses, disabilities, and functional incapacity, although strongly correlated in an elderly population, cannot be collapsed into one big category for planning services; co-ordinated services in a multidisciplinary approach are needed, not dominance from one professional group. As to costs, an examination of the data shows that in relative terms costs for community care tended to increase significantly in the recent past. Yet it is not clear that there has been a transfer from short-term medical and hospital services to long-term care. However, there has been an important internal change in hospital costs, with the elderly representing the only group whose costs are rising. In short, despite the political rhetoric on long-term care for the elderly promoting a community approach, these services' main function is still the surveillance of the vulnerable elderly in both short- and long-term care facilities; adapting the elderly to their environment and the environment to the elderly play a growing, though minor, role in the overall picture of medical and social services.

Benchmark is an important aspect of quality measurement and evaluation of long-term care services (LTCS) performance. In this study, we aimed to estimate achievable benchmarks of care (ABC©) for 12 quality indicators used to monitor the quality of care in Australian LTCS and to identify LTCS characteristics associated with attaining the estimated ABC. A cross-sectional study was conducted using integrated population-based datasets from long-term care, health care, and social welfare sectors within the Registry of Senior Australians (ROSA) National Historical Cohort. All LTCS residents in 2019 were included. Twelve risk-adjusted quality indicators were examined. ABC were defined as the performance level of top-ranked LTCS, including those sequentially from rank 1 onward, until the combined number of residents included at least 10% of all residents nationally. Indicator-specific ABC for 2019 were estimated using Bayesian-adjusted performance fraction ranking. Logistic regressions estimated LTCS characteristics associated with ABC attainment. 2746 LTCS and 244 419 residents (≥65 years) between 1 January 2019 and 31 December 2019 were included. The cohort was mostly female (65%), with a median age of 86 years, and 56% had dementia. The ABC provide performance targets based on the observed levels of top-performing LTCS. The ABC for premature mortality (0.007%), weight loss hospitalizations (0.1%), pressure injuries (0.2%), delirium and dementia hospitalizations (0.2%), and medication-related adverse events (0.4%) were lower than 1% and attained by 17-59% of LTCS. The ABC for fractures (1.3%), falls (3.9%), and emergency department presentations (5.1%) were between 1 and 5% and attained by 7-11% of LTCS. The ABC for antipsychotic use (10.5%), chronic opioid use (12.6%), high sedative load exposure (26.8%), and antibiotic use (47.8%) were between 10 and 50% and met by 6-7% of LTCS. Smaller LTCS and government-owned LTCS were more likely to achieve the ABC compared to medium, larger, private, and not-for-profit LTCS. This is the first national estimation of ABC for Australian LTCS, identifying real-world examples of LTCS with relatively better national performance. The ABC are realistic goals for LTCS improvement efforts. They can be leveraged as national standards in quality monitoring reports and incentive programs. Smaller and government LTCS were generally more likely to attain ABC.

Context: ABI can arise from many causes and is a significant issue for long-term care. Developments in health care have meant that many more people with ABI are living longer, some with complex needs arising from their brain injury. The consequences of injury are generally long-term, even lifelong. Family members of people with ABI are significant to their rehabilitation, support and care, and research has identified many of the challenges they face. Objective: This paper reports work to survey the views of family members of people with ABI to ascertain their experience of the condition and their views and experience of related health and social care services. Method: An online survey was distributed via ABI networks to family members of individuals affected by ABI. One hundred ten respondents ranked the difficulties met by their relative living with an ABI and rated the services they had encountered. A series of open questions enabled respondents to provide greater detail regarding their experience and knowledge. Findings: The key findings are that relationships between the injured and non-injured parties change, alterations to roles and responsibilities are difficult and mediated via unending and complex grief. Relatives reported poor levels of involvement in decisions regarding the provision of social and health care services, a failure to be given good, accurate information in a timely fashion and the need to ‘fight’ for virtually any service provided. Service provision, particularly post-hospital discharge, was very regularly criticized for being either entirely absent, unaware of the impact of brain injury, failing to take account of actual functioning and/or structured in ways that are not concomitant with the needs of the injured person or the relative. Lack of knowledge of the impact of ABI by non-specialist staff and services is particularly highlighted as a barrier to progress and an added burden for relatives to contend with. Social work in particular was commented upon most negatively, most often for a failure to understand the condition and needs. Valued services and professionals are noted to be humane, knowledgeable about ABI, aware of the impact ABI has on the non-injured relative and able to act as a single ‘one-stop’ focal point for service provision. Limitations: As a self-selecting cohort of respondents to an online survey the work is not necessarily generalisable to the population as a whole. The findings, however, provide important considerations for improving social and health care services for people with ABI and the key relatives involved in supporting them. Implications: Commissioners and providers of social and health care services ought to work more closely with family members of people living with ABI. Services and individual practitioners need to be more knowledgeable about the likely functional outcomes of ABI, in particular the impact of invisible impairments to cognition and executive functioning. Relatives identify the benefit of good quality, accurate information and of a knowledgeable single point of contact across time and setting. Knowledge of ABI, of neurorehabilitation and of the impact of ABI upon family members by social workers is noted to be poor and attention to this may help with people’s rehabilitation and to prevent unnecessary additional carer burden.

This study investigates the association between insufficient home care and the use of health and social care services among older adults. Data was collected from the Resident Assessment Instrument (RAI) home care register linked to registers for health care and primary health care (N = 33,493). The results show that one in six respondents felt that they would be better off living elsewhere than at home with home care, and these respondents used more hospital, emergency, and home care services than those who preferred living at home. The findings suggest that when older adults perceive their home care to be insufficient, they are more likely to utilize a range of health and social care services. Improved service integration could potentially mitigate the increased use of health and social care services by older adults who perceive their home care as inadequate. Furthermore, the ongoing healthcare reform in Finland aims to promote the integration of health and social services, which could lead to improved care outcomes for older adults. The study's findings can inform policymakers and healthcare providers on the importance of identifying and addressing the needs of older home care clients, particularly in the context of the ongoing healthcare reform in Finland.