This scoping review focuses on the views of informal caregivers regarding the division of care responsibilities between citizens, governments and professionals and the question of to what extent professionals take these views into account during collaboration with them. In Europe, the normative discourse on informal care has changed. Retreating governments and decreasing residential care increase the need to enhance the collaborationbetween informal caregivers and professionals. Professionals are assumedto adequately address the needs and wishes of informal caregivers, but little is known about informal caregivers’ views on the division of care responsibilities. We performed a scoping review and searched for relevant studies published between 2000 and September 1, 2016 in seven databases. Thirteen papers were included, all published in Western countries. Most included papers described research with a qualitative research design. Based on the opinion of informal caregivers, we conclude that professionals do not seem to explicitly take into account the views of informal caregivers about the division of responsibilities during their collaboration with them. Roles of the informal caregivers and professionals are not always discussed and the division of responsibilities sometimes seems unclear. Acknowledging the role and expertise of informalcaregivers seems to facilitate good collaboration, as well as attitudes such as professionals being open and honest, proactive and compassionate. Inflexible structures and services hinder good collaboration. Asking informal caregivers what their opinion is about the division of responsibilities could improve clarity about the care that is given by both informal caregivers and professionals and could improve their collaboration. Educational programs in social work, health and allied health professions should put more emphasis on this specific characteristic of collaboration.
Challenges in keeping healthcare affordable make informal care increasingly important. It is essential to understand the context in which people provide informal care and gain insight into their wishes with regard to the division of care responsibilities. A total of 37 interviews and eight focus groups were conducted to investigate how Dutch carers’ care attitudes are shaped. Results show that carers’ intersecting social positions, such as gender, migration background, socio-economic status and stage of life, largely influence their care attitudes. Carers want to provide care but experience challenges in doing so. They request a government that takes the lead and facilitates cooperation with professionals.
Dutch society faces major future challenges putting populations’ health and wellbeing at risk. An ageing population, increase of chronic diseases, multimorbidity and loneliness lead to more complex healthcare demands and needs and costs are increasing rapidly. Urban areas like Amsterdam have to meet specific challenges of a growing and super divers population often with a migration background. The bachelor programs and the relating research groups of social work and occupational therapy at the Amsterdam University of Applied Sciences innovate their curricula and practice-oriented research by multidisciplinary and cross-domain approaches. Their Centres of Expertise foster interprofessional research and educational innovation on the topics of healthy ageing, participation, daily occupations, positive health, proximity, community connectedness and urban innovation in a social context. By focusing on senior citizens’ lives and by organizing care in peoples own living environment. Together with their networks, this project aims to develop an innovative health promotion program and contribute to the government missions to promote a healthy and inclusive society. Collaboration with stakeholders in practice based on their urgent needs has priority in the context of increasing responsibilities of local governments and communities. Moreover, the government has recently defined social base as being the combination of citizen initiatives, volunteer organizations , caregivers support, professional organizations and support of vulnerable groups. Kraktie Foundations is a community based ethno-cultural organization in south east Amsterdam that seeks to research and expand their informal services to connect with and build with professional care organizations. Their aim coincides with this project proposal: promoting health and wellbeing of senior citizens by combining intervention, participatory research and educational perspectives from social work, occupational therapy and hidden voluntary social work. With a boundary crossing innovation of participatory health research, education and Kraktie’s work in the community we co-create, change and innovate towards sustainable interventions with impact.
The modern economy is largely data-driven and relies on the processing and sharing of data across organizations as a key contributor to its success. At the same time, the value, amount, and sensitivity of processed data is steadily increasing, making it a major target of cyber-attacks. A large fraction of the many reported data breaches happened in the healthcare sector, mostly affecting privacy-sensitive data such as medical records and other patient data. This puts data security technologies as a priority item on the agenda of many healthcare organizations, such as of the Dutch health insurance company Centraal Ziekenfonds (CZ). In particular when it comes to sharing data securely, practical data protection technologies are lacking as they mostly focus on securing the link between two organizations while being completely oblivious of what is happening with the data after sharing. For CZ, searchable encryption (SE) technologies that allow to share data in encrypted form, while enabling the private search on this encrypted data without the need to decrypt, are of particular interest. Unfortunately, existing efficient SE schemes completely leak the access pattern (= pattern of encrypted search results, e.g. identifiers of retrieved items) and the search pattern (= pattern of search queries, e.g. frequency of same queries), making them susceptible to leakage-abuse attacks that exploit this leakage to recover what has been queried for and/or (parts of) the shared data itself. The SHARE project will investigate ways to reduce the leakage in searchable encryption in order to mitigate the impact of leakage-abuse attacks while keeping the performance-level high enough for practical use. Concretely, we propose the construction of SE schemes that allow the leakage to be modeled as a statistic released on the queries and shared dataset in terms of ε-differential privacy, a well-established notion that informally says that, after observing the statistic, you learn approximately (determined by the ε-parameter) the same amount of information about an individual data item or query as if the item was not present in the dataset or the query has not been performed. Naturally, such an approach will produce false positives and negatives in the querying process, affecting the scheme’s performance. By calibrating the ε-parameter, we can achieve various leakage-performance trade-offs tailored to the needs of specific applications. SHARE will explore the idea of differentially-private leakage on different parts of SE with different search capabilities, starting with exact-keyword-match SE schemes with differentially-private leakage on the access pattern only, up to schemes with differentially-private leakage on the access and search pattern as well as on the shared dataset itself, allowing for more expressive query types like fuzzy match, range, or substring queries. SHARE comes with an attack lab in which we investigate existing and new types of leakage-abuse attacks to assess the mitigation-potential of our proposed combination of differential privacy with cryptographic guarantees in searchable encryption. To stimulate commercial exploitation of SHARE-results, our consortium partners CZ and TNO will take the lead on applying and evaluating our envisioned technologies in various healthcare use-cases.
