Aim: Informal caregivers share common experiences in providing care to someone with health and/or social needs, but at the same time their experiences differ across diverse backgrounds such as gender, age, culture, as these aspects of diversity co-shape these experiences. This scoping review aims to explore how aspects of diversity, across their intersections, are currently incorporated in informal care research and discusses how an intersectional perspective can further develop our understanding of informal care. Methods: A scoping review was performed to map relevant caregiving literature from an intersectionality perspective. Key terms ‘informal care’ and ‘intersectionality’ were used for a search in four databases resulting in the inclusion of 28 articles. All 28 studies were analysed based on a scoping review created intersectionality informed coding scheme. Results: Aspects of diversity are largely understudied in informal care research, in particular across their intersections and from a critical perspective. This intersectional informed analysis revealed that when studying diverse caregiving experiences the use of intersections of dimensions of diversity provides a nuanced understanding of these experiences. Conclusions: Adopting an intersectional perspective ensures that not only different categories or social identities of caregivers are included in future studies, but the mutual relationships between these categories embedded in their specific context are actually studied.
In Dutch policy and at the societal level, informal caregivers are ideally seen as essential team members when creating, together with professionals, co-ordinated support plans for the persons for whom they care. However, collaboration between professionals and informal caregivers is not always effective. This can be explained by the observation that caregivers and professionals have diverse backgrounds and frames of reference regarding providing care. This thematic synthesis sought to examine and understandhow professionals experience collaboration with informal caregivers to strengthen the care triad. PubMed, Medline, PsycINFO, Embase, Cochrane/Central and CINAHL were searched systematically until May 2015, using specific key words and inclusion criteria. Twenty-two articles were used for thematic synthesis. Seven themes revealed different reflections by professionals illustrating the complex, multi-faceted and dynamic interfaceof professionals and informal care. Working in collaboration with informal caregivers requires professionals to adopt a different way of functioning. Specific attention should be paid to the informal caregiver, where the focus now is mainly on the client for whom they care. This is difficult to attain due to different restrictions experienced by professionals on policy and individual levels. Specific guidelines and training for the professionals are necessary in the light of the current policy changes in the Netherlands,where an increased emphasis is placed on informal care structures.
The Social Support Act came into effect on 1 January 2007. The purpose of the new legislation is to enable citizens who are dependent on the support of the Municipality and those living around them to be able to live independently for as long as possible. Organizing informal care is one of the main targets of this policy. In the realization of this act several assumptions about informal care giving were implied. In this paper three of them are examined. The first assumption is that neighbourly cohesion will lead to exchanging neighbourly support. On the other hand it is assumed that a lack of neighbourly cohesion impedes neighbourly support. The second assumption is that there is an imminent shortfall in the supply of informal care. The third assumption is that healthy people (are expected to) help the vulnerable and that they have to be stimulated to do so. The findings are based on qualitative in-depth interviews, conducted in a small Dutch neighbourhood in Eindhoven, called Drents Dorp. It is argued that all three assumptions need revision in order that informal care policy can be more effective. This study shows that the relationship between neighbourhood cohesion and informal care is not clear cut. Neighbourliness is individualized, but this doesn't mean that neighbours don't support each other: they do, but on an individual one-to-one basis. Furthermore, the most vulnerable inhabitants are not reached by social interventions aimed at enhancing social cohesion. The assumed shortfall in the supply of informal care turns out to be a shortage in the demand of informal care. Due to their fear of dependency and pursuit of autonomy and independence, people hesitate to ask for support. This is far more an impediment for informal care than the alleged shortfall in supply. The assumption that the strong will support the vulnerable also needs adjustment. At least an important part of the exchange of support takes place between vulnerable people mutually.
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.
