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.
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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.
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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.
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To enhance prevention and treatment of malnutrition in older adults before, during and after hospitalization, deeper understanding of older adults’ and informal caregivers’ perspective on nutritional care is important. One-time in-depth interviews were conducted with 15 older adults who had been discharged from hospital, and seven informal caregivers. We explored their experiences and needs regarding nutritional care provided in the periods before, during and after hospitalization. Five themes emerged from the data: (1) dietary intake, (2) food service during hospitalization, (3) nutrition-related activities, (4) whose job it is to give nutritional care, and (5) competing care priorities. Further, several opinions about nutritional issues were identified. Older adults and informal caregivers did not always experience optimal nutritional care. When discussing nutritional care, they mainly focused on the in-hospital period. When providing nutritional care and developing guidelines, older adults’ and informal caregivers’ perspective on nutritional care should be incorporated. Here, the periods before, during and after hospitalization should be taken into account equally.
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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.
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The European policy emphasis on providing informal care at home causes caregivers and home care professionals having more contact with each other, which makes it important for them to find satisfying ways to share care. Findings from the literature show that sharing care between caregivers and professionals can be improved. This study therefore examines to what degree and why caregivers’ judgements on sharing care with home care professionals vary. To improve our understanding of social inequities in caregiving experiences, the study adopts an intersectional perspective. We investigate how personal and situational characteristics attached to care judgements are interwoven. Using data of the Netherlands Institute for Social Research, we conducted bivariate and multivariate linear regression analysis (N = 292). We combined four survey questions into a 1–4 scale on ‘caregiver judgement’ (α = 0.69) and used caregivers’ personal (such as gender and health status) and situational characteristics (such as the care recipient's impairment and type of care) as determinants to discern whether these are related to the caregivers’ judgement. Using a multiplicative approach, we also examined the relationship between mutually constituting factors of the caregivers’ judgement. Adjusted for all characteristics, caregivers who provide care to a parent or child with a mental impairment and those aged between 45 and 64 years or with a paid job providing care to someone with a mental impairment are likely to judge sharing care more negatively. Also, men providing care with help from other caregivers and caregivers providing care because they like to do so who provide domestic help seem more likely to be less satisfied about sharing care. This knowledge is vital for professionals providing home care, because it clarifies differences in caregivers’ experiences and hence induce knowledge how to pay special attention to those who may experience less satisfaction while sharing care.
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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.
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The need for care will increase in the coming years. Most people with a disability or old age receive support from an informal caregiver. Caring for a person with dementia can be difficult because of the BPSD (Behavioral and Psychological Symptoms of Dementia). BPSD, including sleep disturbance, is an important factor for a higher care load. In this scoping review, we aim to investigate whether technology is available to support the informal caregiver, to lower the care burden, improve sleep quality, and therefore influence the reduction of social isolation of informal caregivers of people with dementia. A scoping review is performed following the methodological framework by Arksey and O'Mally and Rumrill et al., the scoping review includes scientific and other sources (unpublished literature, websites, reports, etc.). The findings of the scoping review shows that there are technology applications available to support the informal caregiver of a person with dementia. The technology applications mostly contribute to lower the care burden and/or improve sleep quality and therefore may contribute to reduce social isolation. The technology applications found target either the person with dementia, the informal caregiver, or both.
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The transition from home to a nursing home can be stressful and traumatic for both older persons and informal caregivers and is often associated with negative outcomes. Additionally, transitional care interventions often lack a comprehensive approach, possibly leading to fragmented care. To avoid this fragmentation and to optimize transitional care, a comprehensive and theory-based model is fundamental. It should include the needs of both older persons and informal caregivers. Therefore, this study, conducted within the European TRANS-SENIOR research consortium, proposes a model to optimize the transition from home to a nursing home, based on the experiences of older persons and informal caregivers. These experiences were captured by conducting a literature review with relevant literature retrieved from the databases CINAHL and PubMed. Studies were included if older persons and/or informal caregivers identified the experiences, needs, barriers, or facilitators during the transition from home to a nursing home. Subsequently, the data extracted from the included studies were mapped to the different stages of transition (pre-transition, mid-transition, and post-transition), creating the TRANSCITmodel. Finally, results were discussed with an expert panel, leading to a final proposed TRANSCIT model. The TRANSCIT model identified that older people and informal caregivers expressed an overall need for partnership during the transition from home to a nursing home. Moreover, it identified 4 key components throughout the transition trajectory (ie, pre-, mid-, and post-transition): (1) support, (2) communication, (3) information, and (4) time. The TRANSCIT model could advise policy makers, practitioners, and researchers on the development and evaluation of (future) transitional care interventions. It can be a guideline reckoning the needs of older people and their informal caregivers, emphasizing the need for a partnership, consequently reducing fragmentation in transitional care and optimizing the transition from home to a nursing home.
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