TalkingMats as a decision aid to promote involvement in choice and decision-making around home care services for older people with mild to moderate dementia - study protocol for a randomized controlled trial.

BACKGROUND: In Sweden, 72% of people with dementia live in ordinary housing. Of these, 50% receive home care services. Older people with dementia may benefit from developments in decision-making support which aim to facilitate their ability to communicate their personal needs and preferences with care managers and staff in home care services. In this study, we will test and evaluate the use of TalkingMats in Swedish municipal home care services for older people with mild to moderate dementia. TalkingMats is a low-technology communication tool, to help people with communication difficulties express their views. It uses a simple system of picture symbols which are placed on a textured mat. This study will provide insight into the extent to which TalkingMats benefits older people with dementia to feel more involved in decisions related to home care services. In addition, this study will assess the extent to which the use of TalkingMats promotes service providers' efforts to involve service recipients in decision making. The implementation of TalkingMats in home care services will also be studied. METHODS: A parallel group, two-armed randomized controlled trial design in which TalkingMats and Usual Conversation Method will be compared. Two specific situations where older people with dementia must make decisions about home care services will be studied. First, a follow-up needs-assessment conversation between study participants and care managers will be studied. Second, a conversation between participants and home care staff regarding the delivery of the decided home care services will be studied. In addition, a qualitative approach will be used to gain an understanding of study participant and service provider experiences of the impact and implementation of TalkingMats. DISCUSSION: The combined exploratory, descriptive, and experimental study design is considered an important strength which will facilitate multi-facetted knowledge production concerning the involvement and communication needs of older people with dementia generally and within the context of home care services specifically. Combining qualitative and quantitative methods will maximize our ability to assess the effects of TalkingMats. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT05561998 . Registered in September 28, 2022.

Comprehensive geriatric assessment of frail older people: ideals and reality.

We explored different professionals' views on and experiences of comprehensive geriatric assessment (CGA) of frail older people. Forty-six professionals working in hospitals, primary care, or municipal health and social care participated in 10 focus groups. Professional groups comprised of occupational therapists, physiotherapists, nurses, physicians, and social workers. Participants shared an ideal image of how the CGA of frail elderly people should be conducted. Experience-based competence was more often used as an assessment tool than standardized tests. The ideal image contrasted with reality, listening to the needs expressed, with the person's problems, needs, and priorities in the foreground, as described by the categories: a need that can be met; different perspectives on needs; needs can be hidden; and needs assessment is affected by the collaboration around the person, by the context, and by the dialogue. The health and social care professionals' first priority is to make a person-centred tailor-made comprehensive geriatric assessment and not be bound to instruments. Clear guidelines need to be developed, stating which profession assesses what, when and how in order to ensure that person-centred needs are assessed including structures and procedures for how communication and collaboration within the team as well as between the organizations are achieved in order to perform a good person-centred CGA.

Organizing integrated care for older persons: strategies in Sweden during the past decade.

PURPOSE: The purpose of this paper is to describe and analyse ways of organizing integrated care for older persons in Sweden during the past decade. DESIGN/METHODOLOGY/APPROACH: The data consist of 62 cases of development work, described in official reports. A meta-analysis of cases was performed, including content analysis of each case. A theoretical framework comprising different forms of integration (co-ordination, contracting, co-operation and collaboration) was applied. FINDINGS: Co-operation was common and collaboration, including multiprofessional teamwork, was rare in the cases. Contracting can be questioned as being a form of integration, and the introduction of consumer choice models appeared problematic in inter-organization integration. Goals stated in the cases concerned steering and designing care, rather than outcome specifications for older persons. Explicit goals to improve integration in itself could imply that the organizations adapt to strong normative expectations in society. Trends over the decade comprised development of local health care systems, introduction of consumer choice models and contracting out. RESEARCH LIMITATIONS/IMPLICATIONS: Most cases were projects, but others comprised evaluations of regular organization of integrated care. These evaluations were often written normatively, but constituted the conditions for practice and were important study contributions. PRACTICAL IMPLICATIONS: Guiding clinical practice to be aware of importance of setting follow-up goals. SOCIAL IMPLICATIONS: Awareness of the risk that special funds may impede sustainable strategies development. ORIGINALITY/VALUE: A theoretical framework of forms of integration was applied to several different strategies, which had been carried out mostly in practice. The study contributes to understanding of how different strategies have been developed and applied to organize integrated care, and highlights some relationships between integration theory and practice.

Older people's views of quality of care: a randomised controlled study of continuum of care.

AIMS AND OBJECTIVES: To analyse frail older people's views of quality of care when receiving a comprehensive continuum of care intervention, compared with those of people receiving the usual care (control group). The intervention included early geriatric assessment, case management, interprofessional collaboration, support for relatives and organising of care-planning meetings in older people's own homes. BACKGROUND: Prior studies indicate that tailored/individualised care planning conducted by a case manager/coordinator often led to greater satisfaction with care planning among older people. However, there is no obvious evidence of any effects of continuum of care interventions on older people's views of quality of care. DESIGN: Randomised controlled study. METHODS: Items based on a validated questionnaire were used in face-to-face interviews to assess older people's views of quality of care at three, six and 12 months after baseline. RESULTS: Older people receiving a comprehensive continuum of care intervention perceived higher quality of care on items about care planning (p ≤ 0·005), compared with those receiving the usual care. In addition, they had increased knowledge of whom to contact about care/service, after three and 12 months (p < 0·03). CONCLUSIONS: The study gives evidence of the advantages of a combination of components such as organising care-planning meetings in older people's own homes, case management and interprofessional teamwork. RELEVANCE TO CLINICAL PRACTICE: The results have implications for policymakers, managers and professionals in the area of health and social care for older people to meet individual needs of frail older people.

Care planning and decision-making in teams in Swedish elderly care: a study of interprofessional collaboration and professional boundaries.

In front-line practice, joint working between different professionals in health/social care and rehabilitation is regarded as a means to reach a comprehensive assessment of the needs of the older care recipients, leading to decisions on appropriate care and services. The aim of this study was to examine professional collaboration and professional boundaries in interprofessional care planning teams. Two different care planning teams were studied, one performing care planning in the homes of older individuals and the other performing care planning for older people in hospital wards. The empirical data consisted of audio-recorded care planning meetings and interviews with the professionals in the teams. The integration between the professionals involved was most noticeable in the investigation and assessment phase, while it was lower in the planning phase and almost non-existent in decision-making. The home care planning team tended to work in a more integrated manner than the discharge planning team. The importance of clarifying the roles of all professions concerned with needs assessment and care planning for older people became evident in this study.

Older migrants' perceptions of places to meet: Insights for social work practice.

This study aimed to explore the experiences of older migrants' (70+) access to and participation in different meeting places. Qualitative interviews were conducted with participants originating from Finland and four countries in the Western Balkans: Bosnia- Herzegovina, Croatia, Montenegro, and Serbia. The participants used everyday places in the neighborhood, which were not primarily meant to be meeting places, to create and uphold social contacts. These meeting places contributed to experiences of community and trust. Both everyday meeting places and organized meeting places were used to establish and develop relationships that could result in an exchange of both practical and emotional support. Perceptions of "not belonging", limited proficiency in Swedish, and a strained financial situation created barriers to accessing some meeting places. The results of this study demonstrate the significance of meeting places that are not purposefully aimed at older people in general or older people from a specific country.

Disabled in Society - A Scoping Review on Persons Living with Multiple Sclerosis and Disability.

Multiple sclerosis (MS) is a chronic neurological disease with an increasing prevalence. As such, most studies are devoted to various medical aspects of the disease. The theoretical framework used in this scoping review was the social model of disability - a perspective focusing on environmental barriers and discrimination that disabled people face in society. The aim was to explore previous research on disabling barriers and discrimination against persons with MS, and to identify research gaps in connection with this population. The scoping review was performed in two steps: (1) a main search in 8 databases, followed by (2) citation and reference searches. The final sample consisted of 96 included articles. The result showed that most studies had been conducted in the US, and the dominant area of research was employment discrimination. Previous research has studied MS related to various areas, such as employment, social welfare and social services, transportation, housing and accessibility of public places, health services, and in relation to others within society. However, this scoping review showed that although several areas of disability and MS had been included in the previous research, most of the identified areas were researched in few studies without the possibility to generalize the findings to a larger population or a cross-cultural context. Few studies compared differences between persons with MS based on gender, age, and ethnicity. What impact the invisible symptoms of MS had on disability was also researched to a limited extent. The findings have implications for future research and clinical practice. To better understand living conditions for persons with MS from a global perspective, more research across countries is needed. Healthcare professionals need to assess the individual's situation regarding both symptoms of the disease and the impact of societal barriers and discrimination to optimize care of persons with MS.

Barriers for Inter-Organisational Collaboration: What Matters for an Integrated Care Programme?

Introduction: Inter-organisational collaboration is challenging but essential in managing the complex and comprehensive needs of frail older people. Therefore, there is a need to investigate the influence of different barriers to inter-organisational collaboration when implementing an integrated care programme. The aim of this study was to investigate both inpatient and outpatient staff views on the factors they deemed to be influential to inter-organisational collaboration for an integrated care programme. Methods: The study was a cross-sectional study and included staff from hospitals, primary care and municipal health and social care. Results: There were no significant differences between staff from inpatient and outpatient care in measuring factors that may cause difficulties for inter-organisational collaboration. Staff views diverged significantly on all factors, such as educational level at long physical distances, laws and regulations, knowledge of each others work settings, experience from inter-organisational collaboration, different professions, variations in professional status and power, psychosocial factors such as positive work environment and interpersonal chemistry. Discussion: A multidisciplinary team culture and avenues for inter-organisational collaboration need to be developed for improved care continuity. Conclusion: The staffs' educational level influenced what was perceived as barriers to inter-organisational collaboration, and may guide future development of integrated care programmes.

Design of a randomized controlled study of a multi-professional and multidimensional intervention targeting frail elderly people.

BACKGROUND: Frail elderly people need an integrated and coordinated care. The two-armed study "Continuum of care for frail elderly people" is a multi-professional and multidimensional intervention for frail community-dwelling elderly people. It was designed to evaluate whether the intervention programme for frail elderly people can reduce the number of visits to hospital, increase satisfaction with health and social care and maintain functional abilities. The implementation process is explored and analysed along with the intervention. In this paper we present the study design, the intervention and the outcome measures as well as the baseline characteristics of the study participants. METHODS/DESIGN: The study is a randomised two-armed controlled trial with follow ups at 3, 6 and 12 months. The study group includes elderly people who sought care at the emergency ward and discharged to their own homes in the community. Inclusion criteria were 80 years and older or 65 to 79 years with at least one chronic disease and dependent in at least one activity of daily living. Exclusion criteria were acute severely illness with an immediate need of the assessment and treatment by a physician, severe cognitive impairment and palliative care. The intention was that the study group should comprise a representative sample of frail elderly people at a high risk of future health care consumption. The intervention includes an early geriatric assessment, early family support, a case manager in the community with a multi-professional team and the involvement of the elderly people and their relatives in the planning process. DISCUSSION: The design of the study, the randomisation procedure and the protocol meetings were intended to ensure the quality of the study. The implementation of the intervention programme is followed and analysed throughout the whole study, which enables us to generate knowledge on the process of implementing complex interventions. The intervention contributes to early recognition of both the elderly peoples' needs of information, care and rehabilitation and of informal caregivers' need of support and information. This study is expected to show positive effects on frail elderly peoples' health care consumption, functional abilities and satisfaction with health and social care. TRIAL REGISTRATION: ClinicalTrials.gov: NCT01260493.

Elderly persons in the risk zone. Design of a multidimensional, health-promoting, randomised three-armed controlled trial for "prefrail" people of 80+ years living at home.

BACKGROUND: The very old (80+) are often described as a "frail" group that is particularly exposed to diseases and functional disability. They are at great risk of losing the ability to manage their activities of daily living independently. A health-promoting intervention programme might prevent or delay dependence in activities of daily life and the development of functional decline. Studies have shown that those who benefit most from a health-promoting and disease-preventive programme are persons with no, or discrete, activity restrictions. The three-armed study "Elderly in the risk zone" is designed to evaluate if multi-dimensional and multi-professional educational senior meetings are more effective than preventive home visits, and if it is possible to prevent or delay deterioration if an intervention is made when the persons are not so frail. In this paper the study design, the intervention and the outcome measures as well as the baseline characteristics of the study participants are presented. METHODS/DESIGN: The study is a randomised three-armed single-blind controlled trial with follow-ups 3 months, 1 and 2 years. The study group should comprise a representative sample of pre-frail 80-year old persons still living at home in two municipalities of Gothenburg. To allow for drop-outs, it was estimated that a total of about 450 persons would need to be included in the study. The participants should live in their ordinary housing and not be dependent on the municipal home help service or care. Further, they should be independent of help from another person in activities of daily living and be cognitively intact, having a score of 25 or higher as assessed with the Mini Mental State Examination (MMSE). DISCUSSION: We believe that the design of the study, the randomisation procedure, outcome measurements and the study protocol meetings should ensure the quality of the study. Furthermore, the multi-dimensionality of the intervention, the involvement of both the professionals and the senior citizens in the planning of the intervention should have the potential to effectively target the heterogeneous needs of the elderly.

Significance of scientific evidence in organizing care processes.

Purpose - The purpose of this paper is to analyze how staff and managers in health and social care organizations use scientific evidence when making decisions about the organization of care practices. Design/methodology/approach - Document analysis and repeated interviews (2008-2010) with staff (n=39) and managers (n=26) in health and social care organizations. The respondents were involved in a randomized controlled study about testing a continuum of care model for older people. Findings - Scientific evidence had no practical function in the social care organization, while it was a prioritized source of information in the health care organization. This meant that the decision making regarding care practices was different in these organizations. Social care tended to rely on ad hoc practice-based information and political decisions when organizing care, while health care to some extent also relied in an unreflected manner on the scientific knowledge. Originality/value - The study illustrates several difficulties that might occur when managers and staff try to consider scientific evidence when making complicated decisions about care practices.

The Impact of Socioeconomic Conditions, Social Networks, and Health on Frail Older People's Life Satisfaction: A Cross-Sectional Study.

It has been shown that frailty is associated with low levels of well-being and life satisfaction. Further exploration is needed, however, to better understand which components constitute life satisfaction for frail older people and how satisfaction is related to other life circumstances. The aim of this study was to examine relationships between frail older people's life satisfaction and their socioeconomic conditions, social networks, and health-related conditions. A cross-sectional study was conducted (n=179). A logistic regression analysis was performed, including life satisfaction as the dependent variable and 12 items as independent variables. Four of the independent variables made statistically significant contributions: financial situation (OR 3.53), social contacts (OR 2.44), risk of depression (OR 2.26), and self-rated health (OR 2.79). This study demonstrates that financial situation, self-rated health conditions and social networks are important components for frail older people's life satisfaction. Health and social care professionals and policy makers should consider this knowledge in the care and service for frail older people; and actions that benefit life satisfaction - such as social support - should be promoted.

Patient participation in discharge planning conference.

INTRODUCTION: There is a need for individualized discharge planning to support frail older persons at hospital discharge. In this context, active participation on their behalf cannot be taken for granted. The aim of this study was to elucidate patient participation in discharge planning conferences, with a focus on frail older persons, supported by the theory of positioning described by Harré & van Langenhove. METHODS: The study was designed as a case study based on audio-recordings of multidisciplinary discharge planning conferences and interviews with health professionals elucidating their opinions on preconditions for patient participation in discharge planning. The analysis has been performed using qualitative content analysis and discourse analysis. Data collection took place during 2008-2009 and included 40 health professionals and 13 frail older persons in hospital or municipal settings. RESULTS: Findings revealed four different positions of participation, characterized by the older person's level of activity during the conference and his/her appearance as being reduced (patient) or whole (person). The positions varied dynamically from being an active person, passive person, active patient, or passive patient and the health professionals, next-of-kin, and the older persons themselves contributed to the positioning. CONCLUSIONS: The findings showed how the institutional setting served as a purposeful structure or a confinement to patient participation.

Multi-professional and multi-dimensional group education--a key to action in elderly persons.

PURPOSE: This study was intended to evaluate a multi-professional health-promoting and disease-preventive intervention organized as multi-professional senior group meetings, which addressed home-dwelling, independently living, cognitively intact elderly persons (80±), by exploring the participants' experiences of the intervention. METHOD: The focus group methodology was used to interview a total of 20 participants. The informants had participated in four multi-professional senior group meetings at which information about the ageing process and preventive strategies for enhancing health were discussed. RESULTS: The overall finding was that the elderly persons involved in the intervention lived in the present, but that the supportive environment together with learning a preventive approach contributed to the participants' experiencing the senior meetings as a key to action. CONCLUSIONS: Elderly persons who are independent may have difficulty accepting information about preventing risks to health. However, group education with a multi-professional approach may be a successful model for achieving an exchange of knowledge, which may possibly empower the participants, give them role models, the opportunity to learn from each other and a sense of sharing problems with people in similar circumstances.

Fidelity and moderating factors in complex interventions: a case study of a continuum of care program for frail elderly people in health and social care.

BACKGROUND: Prior studies measuring fidelity of complex interventions have mainly evaluated adherence, and not taken factors affecting adherence into consideration. A need for studies that clarify the concept of fidelity and the function of factors moderating fidelity has been emphasized. The aim of the study was to systematically evaluate implementation fidelity and possible factors influencing fidelity of a complex care continuum intervention for frail elderly people. METHODS: The intervention was a systematization of the collaboration between a nurse with geriatric expertise situated at the emergency department, the hospital ward staff, and a multi-professional team with a case manager in the municipal care services for older people. Implementation was evaluated between September 2008 and May 2010 with observations of work practices, stakeholder interviews, and document analysis according to a modified version of The Conceptual Framework for Implementation Fidelity. RESULTS: A total of 16 of the 18 intervention components were to a great extent delivered as planned, while some new components were added to the model. No changes in the frequency or duration of the 18 components were observed, but the dose of the added components varied over time. Changes in fidelity were caused in a complex, interrelated fashion by all the moderating factors in the framework, i.e., context, staff and participant responsiveness, facilitation, recruitment, and complexity. DISCUSSION: The Conceptual Framework for Implementation Fidelity was empirically useful and included comprehensive measures of factors affecting fidelity. Future studies should focus on developing the framework with regard to how to investigate relationships between the moderating factors and fidelity over time. TRIAL REGISTRATION: ClinicalTrials.gov, NCT01260493.

Care planning at home: a way to increase the influence of older people?

INTRODUCTION: Care-planning meetings represent a common method of needs assessment and decision-making practices in elderly care. Older people's influence is an important and required aspect of these practices. This study's objective was to describe and analyse older people's influence on care-planning meetings at home and in hospital. METHODS: Ten care-planning meetings were audio-recorded in the older people's homes and nine were recorded in hospital. The study is part of a project including a comprehensive continuum-of-care model. A qualitative content analysis was performed. RESULTS: Care-planning meetings at home appeared to enable older people's involvement in the discussions. Fewer people participated in the meetings at home and there was less parallel talking. Unrelated to the place of the care-planning meeting, the older people were able to influence concerns relating to the amount of care/service and the choice of provider. However, they were not able to influence the way the help should be provided or organised. CONCLUSION: Planning care at home indicated an increase in involvement on the part of the older people, but this does not appear to be enough to obtain any real influence. Our findings call for attention to be paid to older people's opportunities to receive care and services according to their individual needs and their potential for influencing their day-to-day provision of care and service.

Implementing a continuum of care model for older people-results from a Swedish case study.

INTRODUCTION: There is a need for integrated care and smooth collaboration between care-providing organisations and professions to create a continuum of care for frail older people. However, collaboration between organisations and professions is often problematic. The aim of this study was to examine the process of implementing a new continuum of care model in a complex organisational context, and illuminate some of the challenges involved. The introduced model strived to connect three organisations responsible for delivering health and social care to older people: the regional hospital, primary health care and municipal eldercare. METHODS: The actions of the actors involved in the process of implementing the model were understood to be shaped by the actors' understanding, commitment and ability. This article is based on 44 qualitative interviews performed on four occasions with 26 key actors at three organisational levels within these three organisations. RESULTS AND CONCLUSIONS: The results point to the importance of paying regard to the different cultures of the organisations when implementing a new model. The role of upper management emerged as very important. Furthermore, to be accepted, the model has to be experienced as effectively dealing with real problems in the everyday practice of the actors in the organisations, from the bottom to the top.