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1.
BMJ Open ; 14(8): e081526, 2024 Aug 06.
Artigo em Inglês | MEDLINE | ID: mdl-39107024

RESUMO

INTRODUCTION: Due to the increasing number of persons with dementia, the need for family and professional support is growing. Counselling services aim to support family dementia caregivers and the use of information and communication technology may improve accessibility to counselling. The effectiveness of technology-based counselling in dementia remains unclear so far. Few randomised controlled trials have been conducted assessing heterogeneous outcomes. Theoretical underpinnings for the development and evaluation of these complex interventions were lacking in most cases. We therefore aim to formulate an initial programme theory of a technology-assisted counselling intervention for family dementia caregivers and to create the data basis for the consensus process of a core outcome set. METHODS AND ANALYSIS: The methodological approaches for developing a programme theory and a core outcome set will be integrated. In a scoping review, data on the characteristics, theoretical foundations of counselling interventions and outcomes of clinical studies will be collected. The lifeworld perception of relevant stakeholders on the importance of counselling in family caregiving will be explored in a phenomenological substudy using semistructured interviews. The synthesis of data from the literature review and the qualitative substudy will be performed by developing a logic model. Mechanisms of action and assumed causal relationships are explicated in the elements of programme theory (theory of change, outcomes chain and theory of action). An initial programme theory is then formulated. In addition, a 'long list' of outcomes and assessment instruments will be compiled. ETHICS AND DISSEMINATION: The ethics committee of the Medical Faculty of the Martin Luther University Halle-Wittenberg approved the study protocol (no. 2023-093).Findings will be reported to participants and the funding organisation and disseminated in peer-reviewed journals and at national and international conferences. TRIAL REGISTRATION NUMBER: The ProCOS (Development and evaluation of a technology-assissted counselling intervention for family caregivers of persons with dementia - Programme theory and preparation of a core outcome set) project is registered with the Core Outcome Measures in Effectiveness Trials initiative (https://www.comet-initiative.org/Studies/Details/2884).


Assuntos
Cuidadores , Aconselhamento , Demência , Humanos , Demência/terapia , Aconselhamento/métodos , Projetos de Pesquisa
2.
PLoS One ; 19(5): e0302929, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38713699

RESUMO

BACKGROUND: Recognised as essential for high-quality dementia service, person-centred care aims to understand and respect the unique needs of each individual. Self-experience practices may offer caregivers an opportunity to acquire knowledge, empathy, and skills related to person-centred care, especially through recreating experiences similar to dementia. Given the need to enhance the understanding of self-experience practices in dementia care, a more comprehensive investigation of these training interventions for (future) caregivers is needed. METHODS: We conducted a scoping review to map the evidence on the use of self-experience practices in dementia training. We systematically searched Cochrane Library, MEDLINE via PubMed, CINAHL, and Web of Science. We also searched for grey literature, as well as registry entries, and conducted backward citation tracking of included reviews. We analysed data on intervention characteristics, factors influencing the implementation, and learning outcomes based on Kirkpatrick's model. RESULTS: We included 44 reports across 30 intervention programmes. The majority of reports (91%) were published from 2016 onwards, with 32% originating from the USA and 25% from the UK. We identified passive, interactive, immersive, and multicomponent self-experience interventions in dementia education and training. Learning outcomes based on Kirkpatrick's model were fairly distributed across all identified modalities. Both consumers and providers emphasised aspects related to the development and implementation of practices, particularly organisational-related considerations such as temporal and spatial planning of trainings. CONCLUSIONS: Our review highlights diverse interventions incorporating self-experience practices, with an increasing role for technological tools. While self-experience interventions engage participants, the impact on individuals with dementia and organisational levels remain largely unreported. Our overview, informed by current literature, underscores unique considerations and challenges associated with dementia-related self-experience practices. Implementing and evaluating complex training interventions using self-experience practices should consider ethical aspects. TRIAL REGISTRATION: Registry: Registered within the Open Science Framework (available at https://osf.io/fycxa/).


Assuntos
Cuidadores , Demência , Humanos , Demência/terapia , Cuidadores/psicologia , Assistência Centrada no Paciente
3.
JMIR Aging ; 7: e51544, 2024 Jan 25.
Artigo em Inglês | MEDLINE | ID: mdl-38271050

RESUMO

BACKGROUND: Implementing technology-based counseling as a complex intervention in dementia care poses challenges such as adaptation to stakeholders' needs and limited resources. While studies have examined the effectiveness of technology-based counseling, its successful implementation remains largely unexplored. OBJECTIVE: We aimed to review the knowledge about the implementation success of technology-based counseling interventions for people with dementia and their informal caregivers. METHODS: We conducted a scoping review and systematically searched CINAHL, the Cochrane Library including the Cochrane Central Register of Controlled Trials, MEDLINE, PsycINFO, and Web of Science Core Collection databases (April 2021) in combination with citation searching and web searching (November 2021). Studies reporting on technology-based counseling interventions for people with dementia or their informal caregivers were included, irrespective of the design. We used the conceptual framework for implementation outcomes to operationalize implementation success and applied the outcomes acceptability, adoption, appropriateness, feasibility, fidelity, implementation cost, penetration, and sustainability as categories to inform data extraction. We identified dimensions within the categories and synthesized results narratively and graphically. RESULTS: We included 52 publications reporting on 27 technology-based counseling interventions. The studies were conducted in 9 countries and published between 1993 and 2021. As the design of the included studies varied, the number of participants and the type of data reported varied as well. The intervention programs were heterogeneous and ranged from single counseling interventions (such as helpline services) to counseling as part of a multicomponent program. Telephone, email, videoconferencing, social media (respectively chats), and web-based platforms were used for delivering counseling. We found data on appropriateness for all interventions and data on acceptability for most interventions, describing aspects such as consumer-perceived usefulness and helpfulness of services, as well as satisfaction. Information on the other categories of adoption, feasibility, fidelity, implementation cost, penetration, and sustainability was fragmented. CONCLUSIONS: The scope and depth of information on conceptual categories of the implementation success of technology-based counseling for people with dementia and informal caregivers varied. The data only partially covered the concept of implementation success, which highlights the need for a systematic evaluation accompanying the implementation. The application of theoretical approaches for implementation and adherence to the framework for developing and evaluating complex interventions are required to promote the implementation of complex interventions and to comprehensively assess implementation success. TRIAL REGISTRATION: PROSPERO CRD42021245473; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=245473.


Assuntos
Cuidadores , Demência , Humanos , Cuidadores/psicologia , Aconselhamento , Satisfação Pessoal , Casamento , Demência/terapia
4.
J Alzheimers Dis ; 93(3): 891-906, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37125549

RESUMO

BACKGROUND: Information technology can enhance timely and individual support for people with Alzheimer's disease and other dementias and their informal carers. OBJECTIVE: To review the effectiveness of technology-based counselling interventions for people with dementia and informal carers. METHODS: Randomized controlled trials of remote dementia counselling interventions were included. We searched CINAHL, Cochrane Library, MEDLINE, PsycINFO, and the Web of Science Core Collection (April 2021) in combination with citation tracking and free web searching (October to November 2021). We provide meta-analyses for caregiver depression, burden, and self-efficacy/mastery and structured reporting for other outcomes. The Grading of Recommendations Assessment, Development and Evaluation approach and the Risk of Bias 2 tool were applied. RESULTS: We included five randomized controlled trials involving 880 participants. Interventions were provided for carers (four studies) or dyads (one study). Carers were predominantly women and were the spouses or children of people with dementia. Counselling was delivered via telephone or videoconference with two to 23 sessions over 1 to 12 months. Control groups received educational and resource materials only, standard (helpline) services, non-directive support, or home visits. Meta-analysis for our primary outcome, depressive symptoms in carers, revealed no statistically significant effect (SMD -0.15; 95% CI -0.40 to 0.10). There were also no significant effects on burden and self-efficacy/mastery. We rated the certainty of evidence as low to very low and all outcomes at an overall high risk of bias. CONCLUSION: The effectiveness of technology-based counselling interventions for people with dementia and informal carers remains uncertain. Theory-based approaches are needed for the development and evaluation of these interventions.


Assuntos
Doença de Alzheimer , Cuidadores , Humanos , Feminino , Masculino , Autoeficácia , Aconselhamento , Tecnologia , Qualidade de Vida
5.
Pflege ; 34(6): 301-309, 2021.
Artigo em Alemão | MEDLINE | ID: mdl-34647486

RESUMO

The Neumarkt concept of nursing case responsibility: A framework for consequent and person-centred realization of the nursing process Abstract. Background: An essential requirement for the realization of person-centred practice is a practice environment, that supports the forming of professional nurse-patient-relationships. Therefore, Klinikum Neumarkt implemented in context of practice development a concept for nursing case responsibility, that offers a framework for a person-centred and systematic coordination of the nursing process. Because of the existing conflict between economic and nursing interests, it is essential to prove the effectiveness of the concept. Aim: Our aim was the exploration of the effects of the concept implementation from the patient's as well as the interprofessional team's perspective, including the economic implications. Methods: The multiperspective evaluation was conducted with individual interviews and an economic analysis of hospital routine data. Results: The patients and the interprofessional team perceive a person-centred care and coordination of the nursing process. They also point out the required resources. The economic results show a significantly increased revenue through better documentation of complex nursing situations of patients included in the concept (Odds ratio: 4.00, 95%-Confidence Interval [2.15; 8.01], p < 0.001). Discussion: The results provide evidence of the efficacy of the concept for a systematic, person-centred coordination of the nursing process and justify an increased use of resources needed. Limitations and transfer: The implementation of the concept is a drastic change for everyone involved and needs to be embedded in a strategic practice development.


Assuntos
Processo de Enfermagem , Assistência Centrada no Paciente , Humanos , Relações Enfermeiro-Paciente
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