Elizabeth Hanson

Linnaeus University | lnu · Department of Health and Caring Sciences

Background Public involvement in health and social care research is increasingly prioritized by policy-makers and research funders. Often, the impact of the involvement is described in terms of how it has contributed to the research outcomes and how it has affected the involved members of the public. There is a dearth of studies reporting from the...

Many children under the age of 18 are drawn into unpaid caring roles because they live in families where there is chronic illness, mental health problems or substance misuse, and because other alternatives are not available. Many of these children, widely referred to as 'young carers', provides regular and significant amounts of care, often 'hidden...

Young carers are children and adolescents who provide care to other family members or friends, taking over responsibilities that are usually associated with adulthood. There is emerging but still scarce knowledge worldwide about the phenomenon of young carers and the impact of a caring role on their health, social and personal development spheres....

Funding Acknowledgements Type of funding sources: Public grant(s) – National budget only. Main funding source(s): Swedish research council for health, working life and welfare Background Informal care is increasing due to societal challenges such as ageing populations, more non-communicable diseases in combination with lack of health care personne...

The general discourse in health and social care policy purports digital technology as necessary to meet growing demands for long-term care and health care as a result of an ageing population. This needs critical investigation since public policy influences people's health and wellbeing. This study aims to interrogate critically what we call the ‘di...

For the first time, this article will provide a cross-national profile of adolescents who provide unpaid care to their ill or disabled family members in six European countries with varied levels of awareness, policy and service provision regarding adolescent young carers. Utilising an online survey, 2,099 adolescent young carers were identified in...

Introduction Informal carers in paid employment–working carers (WKCs)—have complex support needs. However, little is known about WKCs’ pattern of informal care provision, the support they receive, the impact providing care has on their employment, and how these vary between male and female WKCs. This study describes the pattern of informal care pro...

Many adolescent young caregivers (AYCs) care for a grandparent (GrP) with chronic disease , especially in countries with no or low developed long-term care systems and/or level of awareness of and policy responses to young caregivers. This mixed-methods study aimed at shedding light on the needs and difficulties faced by a sample of 162 adolescents...

The article aims to describe the experiences of 87 Italian adolescent young caregivers (AYCs) of grandparents (GrPs), with reference to the caregiving stress appraisal model (CSA) that provides a theoretical lens to explore the difficulties encountered and support needed in their caring role. Qualitative data were drawn from an online survey conduc...

Background Over the past decades, informal care has increased in most OECD-countries. Informal care is costly to caregivers and to society in the form of lost income and direct costs of providing care. Existing evidence suggests that providing informal care affects caregivers’ overall health. However, estimates of the social costs of informal care...

Background: Due to demographic changes and a strained public sector operating in many countries globally, informal care is increasing. Currently, at least 1.3 million adults in Sweden regularly provide help, support and/or care to a family member/significant other. With no sign of an imminent decrease in their caring activities, it is important tha...

Building on an ethnographic approach, this study aims to explore how the notion of couplehood and family life is understood and negotiated in everyday life by older carers and their spouses. Inspired by Morgan’s perspective on the doing of family life, and Hochschild’s analysis of emotion work and feeling rules, the article shows how the process of...

Despite some national examinations of policy responses for young carers (YCs), this study provides a first comprehensive cross-national comparison of the different legislation, policy and service frameworks that exist to protect and support adolescent young carers (AYCs) in six European countries (Italy, Netherlands, Slovenia, Sweden, Switzerland a...

Background Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer’s health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal care...

It is estimated that 4-8% of youth in Europe carry out substantial care for a family member or significant other. To prevent adverse psychosocial outcomes in young carers (YCs), primary prevention resilience building interventions have been recommended. We describe the study protocol of an international randomized controlled trial (RCT) of an innov...

Our article is about involving informal carers in research and development work. It is a kind of overview of my doctoral research studies. https://vibraweb.se/aic/211/#p=60

Background and aims There is a growing demand for health and social care services to provide technology‐mediated interventions that promote the health and well‐being of older people with health or care needs and of their informal carers. The objectives of this study were to scope and review the nature and extent of prior intervention studies involv...

Background Across Europe, young carers (YCs) and their need for support receive limited attention in the media, policy and empirical research, even though, similar to adult carers, they also provide care to ill family members. The Delphi study, a qualitative research methodology, which provides the focus for this article, had the overall aim of exp...

Although up to 8% of European youngsters carry out high-intensity care for a family member, adolescent young carers (AYCs), especially those caring for their grandparents (GrPs), remain an under-researched group. This study aimed at addressing the current knowledge gap by carrying out an online survey in Italy, the Netherlands, Slovenia, Sweden, Sw...

Background: Informal carers have a crucial role in the care of older people, but they are at risk of social isolation and psychological exhaustion. Web-based services like apps and websites are increasingly used to support informal carers in addressing some of their needs and tasks, such as health monitoring of their loved ones, information and com...

Background Across Europe there is limited attention paid in media, policy and empirical research to the situation of young carers (YCs) and their needs for support, while similarly to adult carers, they provide care to ill family members. The Delphi study, which provides the focus for this article, had the overall aim of exploring existing successf...

Background Across Europe, young carers (YCs) and their need for support receive limited attention in the media, policy and empirical research, even though, similar to adult carers, they also provide care to ill family members. The Delphi study, a qualitative research methodology, which provides the focus for this article, had the overall aim of exp...

Background Across Europe, young carers (YCs) and their need for support receive limited attention in the media, policy and empirical research, even though, similar to adult carers, they also provide care to ill family members. The Delphi study, a qualitative research methodology, which provides the focus for this article, had the overall aim of exp...

User involvement in research is advocated as an avenue for efficient societal developments. In this article, we identify potentials, problems, and challenges related to research on aging and health, and identify and illustrate research priorities using an evolving research program as an example. Involving user representatives in the development pha...

BACKGROUND: Working family carers are an important resource for the care of older people but can experience negative pressures without support. OBJECTIVE: This study examined the perceived value of forms of support and the level of receipt of valued forms of support among Swedish working carers, with a focus on information and communication technol...

Purpose In Sweden, the care of older people and people with disabilities is increasingly carried out by informal carers, often family members, who are unpaid and outside a professional or formal framework. While there is an increasing awareness of the role of carers within service systems and their own needs for support, their involvement in resear...

The aim of this study was to describe the needs and expectations of support within everyday life among community-dwelling people living well with an early stage dementia and their informal carers. The study employed a qualitative design. Data were collected in 2018, via four focus group interviews with, in total, 17 people with dementia and 21 info...

The aim of this review was to describe research related to support interventions for adult family members of people with mental illness and the significance that support may have. The results indicate the importance of flexible and individualized forms of support from both professionals and people with personal experience as a family member of some...

Carers' views and experiences of the co-creation of a national carer strategy In Sweden, increasingly the care of older people is carried out by informal/family carers. That is, family members- adult children and spouses, but also relatives and friends. In the move towards people-centred, integrated care systems, there is a growing argument for ca...

Background: Informal carers have a crucial role in the care of older people, but they are at risk of social isolation and psychological exhaustion. Web-based services like apps and websites are increasingly used to support informal carers in addressing some of their needs and tasks, such as health monitoring of their loved ones, information and com...

Purpose The purpose of this paper is to reflect on carers’ experiences of being involved in the development of a web-based support programme for carers of people with heart failure (CPwHF), and discuss the challenges related to their involvement in the development process. The focus was on the different phases in the project as well as the methodo...

The trainers manual explains to potential trainers how to make use of training curriculum developed in the framework of the Erasmus+project Apss4Carers. The handbook aims to allow the exploitation of training course to the greater possible extent. Health care professionals working with informal carers and professional ICT trainers, offering IT cou...

Background: There is a paucity of robust research concerning the care experiences of peoplewith advanced dementia within Europe. It is essential to understand these experiences if weare to address care inequalities and create impactful dementia policies to improve servicesthat support individuals and enable family caring. Objectives: To identify th...

Objective: The aim of the study was to highlight informal caregivers’ interest in using the Information and Communication Technology (ICT)-based ACTION service (Assisting Carers using Telematics Interventions to meet Older People’s Needs) and their ideas for how to further develop and extend the service. The use of ICT is constantly increasing worl...

InformCare is a European Web platform that supports informal caregivers of older people by providing access to online information and professional and peer support. The aim of this study was to assess the usage and usability of a psychosocial Web-based program carried out in three European countries (Italy, Sweden, and Germany). A mixed-methods seq...

Background The death of a parent is a highly stressful life event for bereaved children. Several studies have shown an increased risk of mental ill-health and psychosocial problems among affected children. The aims of this study were to systematically review studies about effective support interventions for parentally bereaved children and to ident...

Method The aim of this study was to explore the systematic follow up of supportive activities in non-profit organizations targeted at children as next of kin. Managers and group leaders were interviewed, and findings were content analysed. Result The findings indicated that a child focus, education, safety and trust were important. These factors w...

BACKGROUND A growing number of studies of informal carers of older people reveal positive results concerning support via Information and Communication Technologies (ICT). Systematic examination of factors that have a potential impact on carer outcomes are needed to inform future research. OBJECTIVE To explore studies concerning ICT support of adul...

80% of care across Europe is provided by the spouses, relatives and friends of older, sick or disabled people. There are over 100 million carers in Europe, probably an underestimate given the difficulty of (self-) recognition among carers. As population ageing generates growing demand for care, the intensity of caring roles is increasing. This symp...

This presentation discusses how new technologies support family carers of older people with reference to the Eurocarers’ hub ‘InformCare’, the web-platform of support services for carers of older people co-funded by the European Union within the INNOVAGE project. After highlighting the status of technology-based services for carers in Europe, the m...

The rationale for involving users in research has its origin in ideas of empowerment, with a striving to shift power in the research process from the researchers to the users. User oriented research showcases a plethora of conceptual and theoretical foundations. We will problematize the variety of terms being used, such as user-driven research, co-...

Addressing active and healthy aging and related challenges in welfare systems demands new solutions, but the translation of new knowledge to practice is slow. User participation in research is an underutilized way to bridge science, policy and practice, but the impact in terms of effects on, changes for or benefits to society remains to be demonstr...

Methodological issues are of central importance as research funders increasingly stipulate user participation in program/project calls. We will explore whether user involvement is always beneficial and highlight the challenges of involving users in research. We will discuss the ways in which the voices of older people in general as well as of vulne...

Research has mainly focused on carer burden with scant attention being paid to concepts such as carer’s satisfaction, resilience and wellbeing. This presentation explores the complex concept of carer’s health and wellbeing, drawing on literature review findings, the expertise of Eurocarers Research Working Group members and an analysis of findings...

How best to support working carers is being paid increased attention across Europe and internationally. This article examines a largely unexplored area within the empirical literature, namely, information and communication technology-mediated support for working carers of older people. Using an integrative review methodology to draw on both quantit...

An overarching reason why carers do not utilise support services is that many people who perform care-giving do not necessarily self-identify as a carer. Understanding the development of carer identities is therefore crucial for the utilisation of different carer-focused health services. This study arose from the European Union-funded INNOVAGE proj...

Objective: The aim of the study was to explore how family members experienced the use of a diary when a relative does not survive the stay in the intensive care unit (ICU). Method: A qualitative method with a hermeneutic approach was used. Nine participants who read/wrote eight diaries in total were interviewed. The collected data were analysed...

This paper examines the provision of integrated advanced dementia care within seven European countries and critically reviews the potential contribution of the Prudent Healthcare perspective as a starting point for reform. Progressive efforts to innovate, promote quality and integrate care are tempered with the reality of resource constraints. Some...

Background: Informal caregiving is the main source of care for older people in Europe. An enormous amount of responsibility and care activity is on the shoulders of family caregivers, who might experience problems in their psychological well-being and in reconciling caregiving and their personal sphere. In order to alleviate such burden, there is i...

This article presents an integrative literature review of the experience of dementia care associated with the extended palliative phase of dementia. The aim was to highlight how dementia is defined in the literature and describe what is known about the symptomatology and management of advanced dementia regarding the needs and preferences of the per...

Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers; carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web-based information and communication technologies as a means of supporting work...

The Dementia Palliare Best Practice Statement is designed to help professionals think through how they can develop and improve care for people with advanced dementia and their families. The Best Practice statement embraces and promotes a new positive practice approach, 'Palliare' to support the person with advanced dementia, who is not yet requirin...

It is a central feature of current Norwegian health and social care policy to see informal carers as active partners. However, research has revealed that carers often experience a lack of recognition by professionals. In 2010, the Norwegian Directorate of Health initiated a web-based competence-building programme (CBP) for health and social care pr...

Objective: The aim of the study was to describe conceptions of everyday life among people living alone with chronic obstructive pulmonary disease (COPD). Background: COPD is a long-standing, chronic condition. As COPD progresses, it commonly affects all aspects of life. The disease creates a complex life situation for the person living alone, as th...

Demographic ageing is a worldwide process with the associated incidence of dementia expected to increase globally to over 80 million by 2040. In the early stages of dementia many people live independently but, as dementia advances, living well requires increased levels of support and care. People at the advanced stage of the illness are particularl...

Family care support services have mainly focused on older spousal carers of older people and have largely overlooked working carers, whom combine paid work with informal/family care responsibilities. Recently, however, information and communication technology (ICT) systems have been identified as a potentially flexible way of supporting working car...

People with severe disabilities (SD) communicate in complex ways, and their teachers, parents and other involved professionals find it difficult to gain knowledge and share their experiences regarding the person with SD’s communication methods. The purpose of this study is to contribute to our understanding of how parents and professionals share le...

The INNOVAGE project is dedicated to developing, surveying and cataloguing, social innovations for older people. Four new innovations will be developed and tested: a) social innovation for user – driven housing of older people, b) a web-platform for informal carers of older people, c) social intervention for improving obesity in old age, d) social...

Purpose – The purpose of this paper is to highlight the complexity surrounding the implementation of advanced electronic tracking, communication and emergency response technologies, namely, an extended safety and support (ESS) system for people with dementia (pwd) living at home. Results are presented from a Swedish demonstration study (2011-2012)...

Background When the Swedish pharmacy market was re-regulated in 2009, Sweden moved from one state-owned pharmacy chain to several private pharmacy companies, and four new dispensing systems emerged to replace the one system that had previously been used at all Swedish pharmacies for more than 20 years. Objectives The aim of this case study was to...

This multi-municipal intervention study explored whether informal carers of frail older people and disabled children living at home made use of information and communication technology (ICT) to gain knowledge about caring and to form informal support networks, thereby improving their health. Seventy-nine informal carers accessed web-based informati...

ACTION (Assisting Carers using Telematics Interventions to meet Older people's Needs) stemmed from an EU-funded project (1997–2000). It is an Information and Communication Technology (ICT) based support service designed together with frail older people and their family carers to help empower them in their daily lives by providing access to web-base...

Nationellt kompetenscentrum anhöriga fick i uppdrag av Hjälpmedelsinstitutet att under 2012 utvärdera tre projekt inom programmet, "Teknik för äldre II" som fokuserar på tekniskt stöd till anhöriga "Mitt i livet" som kombinerar förvärvsarbete med anhörigomsorg. Det första projektet, "Teknikstöd – ökad social interaktion mellan anhöriga mitt i livet...

Our aim was to investigate connections between Swedish family caregivers' health and providing care for an ill relative by conducting a systematic search and synthesis of previous research. We analyzed 31 articles using first qualitative content analysis then hermeneutic analysis. Analysis resulted in three derived themes-sliding sideways into care...