A person centred model for people with complex care needs

Global demographic shifts of increased life expectancy are a success of our times, yet for many, are accompanied by higher multi-morbidity and patient complexity (1). Research on older people with complex healthcare needs has evolved to focus not only on the ‘health’ domain but also on the interrelated ‘complex social’ care needs. This field remains underserved, with no agreed definition of ‘complex patients’ in the literature (2). The absence of a consensus definition and concept clarification presents a challenge for integrated care systems when developing policy and practice. Older populations with complex care needs often require high levels of support and resourcing, yet many encounter multiple challenges in accessing this support (3) and experience a poorer quality of life. Effective inclusive intervention approaches for this group are imperative, however, should also be outcome-focused and provide a support structure for the staff tasked with providing support. Who is this for? Are you a healthcare or social care practitioner, an operational manager, a social worker, nurse, policy-maker, who has experience or an interest in supporting older people with complex health and social care needs? Or are you a researcher, or academic with an interest in this topic or more broadly in developing policy, procedure or protocols? Aims and Objectives of the Networking: The overall aim of this networking session is to explore the feasibility of developing a research and policy network on how best to support older people with complex health and social care needs. The objectives are to explore and share: (i) interventions that work best for older people with complex health and social care needs; (ii) the impact of older people with complex health and social care needs on integrated care systems, (iii) the feasibility of agreeing a definition of complex health and social care needs; (iv) the feasibility of developing guidelines and policies that support an integrated approach to supporting older people who present with complex needs. Patient and Public Involvement (PPI) and co-design The voice of older people with complex health and social care needs are hard to reach for both research and policy. Therefore, we are particularly interested in exploring novel approaches to meaningfully engaging with this population. A short presentation will be given highlighting the multi-dimensional nature of the topic along with a number of case examples to focus the collaborative discussion. Facilitators: The networking will be led by Dr Austin Warters and co-facilitated by Dr Aurelia Ciblis. References (1)Nicolaus S, Crelier B, Donzé JD, Aubert CE. Definition of patient complexity in adults: A narrative review. Journal of Multimorbidity and Comorbidity. 2022 Feb 17;12. Available from: doi:10.1177/26335565221081288 (2)Kaneko H, Hanamoto A, Yamamoto-Kataoka S, Kataoka Y, Aoki T, Shirai K, Iso H. Evaluation of Complexity Measurement Tools for Correlations with Health-Related Outcomes, Health Care Costs and Impacts on Healthcare Providers: A Scoping Review. International Journal of Environmental Research and Public Health. 2022 Dec 1;19(23):16113. Available from: http://dx.doi.org/10.3390/ijerph192316113 (3)NICE Guideline NG216. Social work with adults experiencing complex needs. 2022 May 26. Available from: www.nice.org.uk/guidance/ng216

A new model of integrated health and social care ibased on collaborative work in vilanova i la geltrú

Introduction: Across Europe, little is known about the policy, organisational and practical aspects of integrated health and social care for children with complex care needs (CCN) in Europe. This growing population of children typically have varying and extensive needs, that often require a coordinated and integrated response from multiple care providers.Aim: This study is part of a large EU funded project on children’s primary health care, Models of Child Health Appraised (MOCHA). This study seeks to examine the legal, policy and organisational structures for social care services for CCN in 30 European countries and to explore how they interface with primary care. Method: Using a network of child health and social care experts (Country Agents) across 30 EU countries, a standard set of questions were asked on the legal, policy and organisational structure for the delivery of social care services to these children and their families. The questions included a case vignette which sought to explore how both their health and social care needs were met in each country. Quantitative responses were analysed using descriptive statistics and qualitative responses were analysed using a thematic framework approach.Results: While some countries deliver social care through government agencies, many outsource services to non-profit and commercial organisations. Just over one-third of the countries surveyed have an established policy framework with specific recommendations on the integration of social care services with health care for children. Ongoing work will explore if this improved practice. Just under one third of the countries surveyed have a care coordinator in place for children with CCN; this role is identified as a positive facilitator of optimum care delivery. Discussion: The diversity of social care structures across the EU illustrates the challenge in trying to develop a model that can be applied across multiple countries. Further work in this project will explore optimum pathways for care delivery at the social healthcare interface.Conclusions: The results of this study suggest that meeting the wider needs (social care needs) of CCN requires a care coordination/management approach based on the wider needs of children so that they can lead an “ordinary life”.Lessons learned: Social care delivery is not uniform across the countries, however, the case vignette approach ensured some uniformity in response which was helpful in validating results.Limitations: The absence of national outcome data on social care needs for children with CCN in the participating countries adds to the complexity of comparing the effectiveness of country wide approaches to supporting this group of children and their families. Suggestions for future work: While most children with CCN require additional health and social care interventions, others may have complex social care needs without a complex health condition, for example, children who have child welfare and child protection requirements. The role of primary care in identifying and/or meeting these needs requires further exploration.

BackgroundThe handover of older adults with complex health and social care from hospital admissions to homebased healthcare requires coordination between multiple care providers. Providing insight to the care coordination from healthcare professionals’ views is crucial to show what efforts are needed to manage patient handovers from hospitals to home care, and to identify strengths and weaknesses of the care systems in which they operate.ObjectiveThis is a comparative study aiming to examine healthcare professionals’ perceptions on barriers and facilitators for care coordination for older patients with complex health and social care needs being discharged from hospital in two capital cities Copenhagen (DK) and Stockholm (SE).MethodSemi-structured interviews were conducted with 25 nurses and 2 assistant nurses involved in the coordination of the discharge process at hospitals or in the home healthcare services (Copenhagen n = 11, Stockholm n = 16). The interview guide included questions on the participants’ contributions, responsibilities, and influence on decisions during the discharge process. They were also asked about collaboration and interaction with other professionals involved in the process. The data was analysed using thematic analysis.ResultsMain themes were communication ways, organisational structures, and supplementary work by staff. We found that there were differences in the organisational structure of the two care systems in relation to integration between different actors and differences in accessibility to patient information, which influenced the coordination. Municipal discharge coordinators visiting patients at the hospital before discharge and the follow-home nurse were seen as facilitators in Copenhagen. In Stockholm the shared information system with access to patient records were lifted as a facilitator for coordination. Difficulties accessing collaborators were experienced in both settings. We also found that participants in both settings to a high degree engage in work tasks outside of their responsibilities to ensure patient safety.ConclusionsThere are lessons to be learned from both care systems. The written e-communication between hospitals and home health care runs more smoothly in Stockholm, whereas it is perceived as a one-way communication in Copenhagen. In Copenhagen there are more sector-overlapping work which might secure a safer transition from hospital to home. Participants in both settings initiated own actions to weigh out imperfections of the system.

ObjectivesAlthough older people can experience complex health and social care needs alongside a primary cancer diagnosis, little is understood about how cancer treatment decisions are made for this population. This...

Assessing the feasibility, acceptability, and efficacy of a pragmatic pilot and full-scale trial to improve care for older adults with complex care needs: The SPIRE study.

There is an increasing number of children with complex care needs, however, there is limited evidence of the experience of families during the process of transitioning to becoming their child's primary care giver. The aim of this study was to explore parents' perspectives of the transition to home of a child with complex respiratory health care needs. Parents of children with a tracheostomy with or without other methods of respiratory assistance, who had transitioned to home from a large children's hospital in the last 5 years, were invited to participate in the interviews. Voice-centred relational method of qualitative analysis was used to analyse parent responses. Four key themes emerged from the interviews including "stepping stones: negotiating the move to home", "fighting and frustration", "questioning competence" and "coping into the future". There is a need for clear and equitable assessments and shared policies and protocols for the discharge of children with complex care needs. Direction and support are required at the level of health service policy and planning to redress these problems. This study provides evidence that the transition of children with complex care needs from hospital to home is a challenging dynamic in need of further improvement and greater negotiation between the parent and health service provider. There are tangible issues that could be addressed including the introduction of a standardised approach to assessment of the needs of the child and family in preparation for discharge and for clear timelines and criteria for reassessment of needs once at home.

BackgroundAdults with chronic conditions who also suffer from mental health comorbidities and/or social vulnerability require services from many providers across different sectors. They may have complex health and social care needs and experience poorer health indicators and high mortality rates while generating considerable costs to the health and social services system. In response, the literature has stressed the need for a collaborative approach amongst providers to facilitate the care transition process. A better understanding of care transitions is the next step towards the improvement of integrated care models. The aim of the study is to better understand care transitions of adults with complex health and social care needs across community, primary care, and hospital settings, combining the experiences of patients and their families, providers, and health managers.Methods/designWe will conduct a two-phase mixed methods multiple case study (quantitative and qualitative). We will work with six cases in three Canadian provinces, each case being the actual care transitions across community, primary care, and hospital settings. Adult patients with complex needs will be identified by having visited the emergency department at least three times over the previous 12 months. To ensure they have complex needs, they will be invited to complete INTERMED Self-Assessment and invited to enroll if positive. For the quantitative phase, data will be obtained through questionnaires and multi-level regression analyses will be conducted. For the qualitative phase, semi-structured interviews and focus groups will be conducted with patients, family members, care providers, and managers, and thematic analysis will be performed. Quantitative and qualitative results will be compared and then merged.DiscussionThis study is one of the first to examine care transitions of adults with complex needs by adopting a comprehensive vision of care transitions and bringing together the experiences of patients and family members, providers, and health managers. By using an integrated knowledge translation approach with key knowledge users, the study’s findings have the potential to inform the optimization of integrated care, to positively impact the health of adults with complex needs, and reduce the economic burden to the health and social care systems.

The International Journal of Integrated Care (IJIC) is an online, open-access, peer-reviewed scientific journal that publishes original articles in the field of integrated care on a continuous basis.IJIC has an Impact Factor of 2.913 (2021 JCR, received in June 2022)The IJIC 20th Anniversary Issue was published in 2021.

PurposePerformance measures are an important mediating mechanism that influences the design and delivery of care. Unfortunately, it is still commonly the case that acute care indicators are employed to assess the efficacy of integrated care. This hinders the ability to accurately assess and continuously improve integrated care efforts for priority populations, including older persons who live with complex health and social care requirements. A core set of indicators is needed from which to assess the quality and impact of integrated care on these older persons and care partners.Design/methodology/approachA modified Delphi process was employed that comprised of the following steps: (1) selection of an indicator inventory (2) defining criteria for ranking and achieving consensus, (3) recruiting participants, (4) iterative voting rounds and analysis and (5) selection of a core indicator set.FindingsThe study produced a core set of 16 indicators of integrated care that pertain to older persons who live with health and social care requirements. The set can be applied by health and social care organizations and systems to assess the quality and impact of integrated care for this population across the continuum of care.Research limitations/implicationsAlthough the gap in the availability of relevant indicators was the impetus for the study, this also meant there was a dearth of validated indicators to draw from. There are significant gaps in commonly used data sets with respect to indicators of integrated care as it relates to older persons and care partner.Practical implicationsThe indicator set is intended to follow the older person and care partner throughout their health journey, enabling a whole systems view of their care. The set can be used in full or in part by health and social care systems and organizations across various primary, acute, rehabilitative and community settings for program development and evaluation purposes.Social implicationsThe core set of indicators that emerged out of this study is a first step toward ensuring that older persons who live with complex health and social care requirements and their care partners receive quality integrated care across the continuum of care.Originality/valueThe findings are informed by the perspectives of older persons, care partners and healthcare professionals. Future research is needed to test, validate and potentially expand the indicator set.

BackgroundThe hospital discharge process of older adults in need of both medical and social care post hospitalisation requires extensive care coordination. Cooperation and continuity between involved care providers are essential, however, existing care systems including the Nordic care systems, are poorly designed to provide health and social care to patients with complex health and social care needs which increases the risk of certain groups not receiving optimal care.Aim and methodsThis study aims to examine and compare what roles, responsibility and actions nurses take in the hospital discharge process of older adults with complex care needs in three Nordic cities: Copenhagen (Denmark), Stockholm (Sweden) and Tampere (Finland). A vignette study consisting of three fictive cases was conducted face-to-face with nurses in Copenhagen (n = 11), Stockholm (n = 16) and Tampere (n = 8). Participants were identified through the researchers’ networks and snowball sampling. The vignettes represent older patients with age-related medical conditions of which one also has cognitive loss and one looks after their partner with dementia. The cases further include differences in the home help received by their children, physical obstacles in their homes and unwillingness of becoming a burden to the system. A thematic approach is used for the data analysis.Results and conclusionsPreliminary results suggest that the informants’ roles and engagement in the coordination and collaboration may differ both within and between the systems studied, and that they take responsibility beyond their job roles particularly if the patient has no close relatives. The study is of public health importance as it identifies gaps in how the care is organised in the three welfare states targeted. It also sheds light on the complexities of providing universal care in ageing societies where a growing proportion of older adults have both medical and social care needs.Key messagesThis study reveals similarities and differences in how the hospital discharge process is organised in 3 Nordic cities.Gaps in the care system are partly filled by nurses who do work beyond their job roles.

BackgroundThe major problem facing health and social care systems globally today is the growing challenge of an elderly population with complex health and social care needs. A longstanding challenge to the provision of high quality, effectively coordinated care for those with complex needs has been the historical separation of health and social care. Access to timely and accurate data about patients and their treatments has the potential to deliver better care at less cost.MethodsTo explore the way in which structural, professional and geographical boundaries have affected e-health implementation in health and social care, through an empirical study of the implementation of an electronic version of Single Shared Assessment (SSA) in Scotland, using three retrospective, qualitative case studies in three different health board locations.ResultsProgress in effectively sharing electronic data had been slow and uneven. One cause was the presence of established structural boundaries, which lead to competing priorities, incompatible IT systems and infrastructure, and poor cooperation. A second cause was the presence of established professional boundaries, which affect staffs’ understanding and acceptance of data sharing and their information requirements. Geographical boundaries featured but less prominently and contrasting perspectives were found with regard to issues such as co-location of health and social care professionals.ConclusionsTo provide holistic care to those with complex health and social care needs, it is essential that we develop integrated approaches to care delivery. Successful integration needs practices such as good project management and governance, ensuring system interoperability, leadership, good training and support, together with clear efforts to improve working relations across professional boundaries and communication of a clear project vision. This study shows that while technological developments make integration possible, long-standing boundaries constitute substantial risks to IT implementations across the health and social care interface which those initiating major changes would do well to consider before committing to the investment.

In recent years, high percentages of health care expenditures have been associated with a relatively small proportion of the population - people with complex health care needs. Most clients in this high-cost group are those with multiple chronic illness conditions requiring long-term health care services, frequent re-hospitalizations, and limitations on their ability or capability to perform daily functions due to physical, mental and/or psychosocial problems. In the US, health care expenditures for people with multiple chronic conditions are up to 17 times higher than for people with no chronic problems (Anderson, 2007); that is, average per capita spending of US$16,800 (16.9 times) for people with five types of chronic illness conditions versus US$7,381 (seven times) for three types versus US$994 for no chronic illness. In Australia, chronic illnesses accounted for 70% of the total burden of ill health in 2002, as measured by disability-adjusted life-years, and this has been expected to increase to 80% by 2010 (National Health Priority Action Council, 2006). Given the far higher prevalence of complex health needs among this group and the projected growth in the next decades of the aging population, the costs of providing appropriate care for these client populations threatens future viability of health care systems worldwide.Individuals with complex health needs can be referred to as those with multiple chronic illnesses, in acute, rehabilitative and ambulatory care settings with a particular interest in high risk care transitions (Schoen, Osborn, How, Doty, & Peugh, 2008). No matter how many types of illness that a person may have, each kind of chronic illness itself - such as ischemic heart disease, stroke, colorectal cancer, breast cancer, diabetes mellitus, and mental illness - is one of the top leading causes of ill-health, disability and injury in the US, Australia, Europe, and many other countries (Council of Australian Governments, 2006; O'Grady & Capretta, 2009; United Kingdom Department of Health, 2006).However, this definition can vary between clients' ages. Children and young people with complex health needs can include those with not only physical diseases but also behavioral difficulties, emotional problems or mental illnesses (McConkey, Barr, & Baxter, 2007). Elderly clients with complex health needs are those with chronic medical problems accompanying issues in an unhealthy aging process. Their needs are generally focused on a better quality of life if they can avoid hospitalization, remain in their homes, and visit their family doctors or community nurses for treatment and care. Although complexity, vulnerability and age may not pre-dispose older people to receive poorer quality of care, some research provides evidence that older clients require timeconsuming processes in health care - such as health assessment and history taking, counseling and medication consultation - and may therefore experience inadequate quality of care (Min et al., 2005). People with noticeable or severe mental health problems are often considered to belong to the client group with complex health needs. This is because they require multi-dimensional and inter-disciplinary approaches of care for their complex conditions, including neurological, emotional, physical, and psychosocial problems and dysfunctions (Chien & Lee, 2011; Chien & Norman, 2009).As a matter of fact, people with complex health care needs are not a distinct category of patients; they are clients at the far end of a populationwide spectrum ranging from so called 'physically healthy' individuals to people with serious medical and/or psychological problems and high utilization of health care services. The long-term goal of efforts in taking care of these client populations may be to ensure that they can receive appropriate care and management for prevention and treatment of their priority illness conditions. However, new initiatives are required to improve health care safety and efficiency and quality in health care delivery, in which multi-components and multidisciplinary collaborations in care planning and provision are found to be of utmost importance (Grabowski, 2009). …

Patients with complex health and social care needs (hereafter “complex needs”) often use services provided by different professionals, calling for integrated care to adequately meet their needs.1 In a previous publication,2 our team presented the COmplex NEeds Case-finding Tool—6 (CONECT-6), a case-finding tool including six yes or no questions, for early identification of people with complex needs who frequently use emergency department services. Even with the most robust psychometric properties, health assessment questionnaires often pose challenges for vulnerable populations, such as a lack of clarity or a lack of specificity to capture the respondents' unique and complex situations.3-6 It is good practice to provide respondents with some advice and guidelines to facilitate the questionnaires' administration and promote their understanding.6 This article aims to propose a few tips to ensure better understanding when administering CONECT-6 to people who frequently use emergency department services to identify if they have complex needs. The ongoing PriCARE Transitions project, funded by the Canadian Institutes of Health Research, aims to better understand the experience of care transitions of patients living with complex needs.7 Knowing that people with complex needs frequently use many health and social services and that emergency department visits are a good proxy of this use,8, 9 people with complex care needs were recruited in six emergency departments from three Canadian provinces (Quebec, New Brunswick, and Newfoundland and Labrador). The CONECT-6 tool was administered as a screening tool for complex needs to patients with three or more emergency visits in the previous year. Patients with two positive answers or more were then invited to complete the INTERMED Self-Assessment (IMSA)10 to confirm complex needs. A validation study of the CONECT-6 tool compared its responses against those in the IMSA,10 which is considered a gold standard for measuring complex needs. CONECT-6 validation documented a sensitivity of 90% and a specificity of 66% with a threshold of two or more positive answers, and a positive predictive value of 49% and a negative predictive value of 95%.2 Thus far, six participating emergency sites in the PriCARE Transitions study have recruited over 700 patients to complete the CONECT-6 screening tool either electronically or on paper. To overcome barriers of low literacy or reading challenges a researcher typically administered the questionnaire,11 but people who indicated that they were more comfortable self-administering the questionnaire could do so. As with many other validated questionnaires, many people raised questions regarding CONECT-6 despite its simple formula and previous validation.6 The most frequent challenges encountered across sites were: (1) for the first, third, and sixth items, people tended to elaborate on their specific situation, leaving the research team to either choose a ‘yes’ or ‘no’ option or to rephrase the question to elicit a ‘yes’ or ‘no’ response; and (2) the second and fifth items sometimes needed more explanation. The research team, including patient partners, met and shared strategies they used to facilitate respondents' understanding and proposed tips. English-speaking members of the team worked on the English version while French-speaking members worked on the French version. Teamwork and discussions ensured that the questionnaires maintained their original meaning. Here are the proposed tips to administer the CONECT-6 tool in Tables 1 and 2. In general, would you say your health is fair to poor, or would you say your health is better than that? If the patient answers better than that, the answer is no, otherwise, the answer is yes. If the patient asks for it, specify that all sources of income include employment income, benefits, annuities, investments, and scholarships. By household, we mean all the people who live under the same roof. Si le patient le demande, préciser que par toutes sources de revenus on inclut les revenus d'emploi, les prestations, les rentes et les bourses. Par ménage, on entend toutes les personnes qui habitent sous le même toit. This paper proposes tips to promote participant understanding when completing the CONECT-6 questionnaire. This 6-item questionnaire remains a useful case-finding tool to identify people with complex health and social needs in the emergency department for recruitment in research projects or in clinical programs. We thank the Canadian Institutes of Health Research for funding. The authors declare no conflict of interest. Data sharing is not applicable to this article as no new data were created or analyzed in this study.

Hospital discharge of older people in need of both medical and social care following their hospital stay requires extensive coordination. This study aims to examine and compare the views of nurses in three Nordic cities on the influence of sociodemographic factors and having close relatives, for the hospital discharge and post hospital care of older people with complex health and social care needs. Thirty-five semi-structured interviews (Copenhagen n = 11, Tampere n = 8, Stockholm n = 16) with nurses were conducted. The nurses were identified through the researchers’ networks, invitation and snowball sampling, and recruited from hospitals, primary care practices, home care units, home nursing units, and geriatric departments. The interviews were transcribed and analysed using thematic analysis. Interpretations were discussed and agreed within the team. Four main themes and 13 sub-themes were identified. Across the cities, informants reported that the patient’s health status, rather than their gender or ethnicity, steered the discharge date and further care. Care costs, commonly reported in Tampere but also in Copenhagen and Stockholm including costs for medications and home help, were considered barriers for disadvantaged older people. Home situation, local arrangements and differences in collaboration between healthcare professionals at different sites also influenced the hospital discharge. Generally, the patient’s health status steered the hospital discharge and post-hospital care. Close relatives were regarded important and a potential advantage. Some informants tried to compensate for the absence of close relatives, highlighting the importance of care systems that can compensate for this to minimise avoidable inequity.