The awareness, visibility and support for young carers across Europe: a Delphi study

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 exploring existing successful strategies to support YCs. Compared to YCs, even less is known about adolescent young carers (AYCs), a group that is in a critical life transition phase. The study forms part of an EU Horizon 2020 funded research project on AYCs aged 15-17 years old. The two-round Delphi study was conducted with 66 experts on YCs from 10 European countries. Topics included: (i) visibility and awareness-raising of YCs at local, regional, and national levels, (ii) current interventions to support YCs, and (iii) future strategies to support YCs. Experts reported a lack of visibility and awareness about YCs in general, and AYCs in particular. Although awareness is slowly increasing in most countries, with the UK ranked highest, experts acknowledged that it remains challenging to identify YCs in many countries. Furthermore, the level and type of support available for YCs differs, with most countries mainly offering support on a local level. Diverse views were expressed regarding future strategies to support YCs. Experts highlighted the importance of specific legislation to formalise the rights of YCs, and the issue of whether young people should be safeguarded from caregiving or if this should be considered part of regular family life. They also emphasised the relevance of available integrated support services for YCs, including schools, family, health and social care. In most European countries, there is a lack of awareness and visibility on YCs. Identification of YCs is a crucial first step and there is need for a common definition of YCs, together with greater opportunities for young adults to identify themselves as YCs

Review and Selection of Online Resources for Carers of Frail Adults or Older People in Five European Countries: Mixed-Methods Study

17.06.2020. 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 communication, and stress management. Despite the growing number of available solutions, the lack of knowledge or skills of carers about the solutions often prevent their usage. OBJECTIVE: This study aimed to review and select apps and websites offering functionalities useful for informal carers of frail adults or older people in 5 European countries (Cyprus, Greece, Italy, Portugal, and Sweden). METHODS: A systematic online search was conducted from January 2017 to mid-March 2017 using selected keywords, followed by an assessment based on a set of commonly agreed criteria and standardized tools. Selected resources were rated and classified in terms of scope. Focus groups with informal carers were conducted to validate the list and the classification of resources. The activities were conducted in parallel in the participating countries using common protocols and guidelines, a standardization process, and scheduled group discussions. RESULTS: From a total of 406 eligible resources retrieved, 138 apps and 86 websites met the inclusion criteria. Half of the selected resources (109/224, 48.7%) were disease-specific, and the remaining resources included information and utilities on a variety of themes. Only 38 resources (38/224, 17.0%) were devoted specifically to carers, addressing the management of health disturbances and diseases of the care recipient and focusing primarily on neurodegenerative diseases. Focus groups with the carers showed that almost all participants had no previous knowledge of any resource specifically targeting carers, even if interest was expressed towards carer-focused resources. The main barriers for using the resources were low digital skills of the carers and reliability of health-related apps and websites. Results of the focus groups led to a new taxonomy of the resources, comprising 4 categories: carer's wellbeing, managing health and diseases of the care recipient, useful contacts, and technologies for eldercare. CONCLUSIONS: The review process allowed the identification of online resources of good quality. However, these resources are still scarce due to a lack of reliability and usability that prevent users from properly benefiting from most of the resources. The involvement of end users provided added value to the resource classification and highlighted the gap between the potential benefits from using information and communication technologies and the real use of online resources by carers.This study was co-funded by the Erasmus+ programme of the European Union, under the Project “Apps for carers”, Grant Agreement n. 2016-1-SE01-KA204-022067. This study was partially supported by Ricerca Corrente funding from the Italian Ministry of Health to IRCCS INRCA

Personal space regulation in childhood autism: Effects of social interaction and person's perspective

Studies in children with Typical Development (TD) and with Autism Spectrum Disorder (ASD) revealed that autism affects the personal space regulation, influencing both its size (permeability) and its changes depending on social interaction (flexibility). Here, we investigate how the nature of social interaction (Cooperative vs. Uncooperative) and the person perspective influence permeability and flexibility of interpersonal distance. Moreover, we tested whether the deficit observed in ASD children, reflects the social impairment (SI) in daily interactions. The stop-distance paradigm was used to measure the preferred distance between the participant and an unfamiliar adult (first-person perspective, Experiment 1), and between two other people (third-person perspective, Experiment 2). Interpersonal distance was measured before and after the interaction with a confederate. The Wing Subgroups Questionnaire was used to evaluate SI in everyday activities, and each ASD participant was accordingly assigned either to the lower (children with low social impairment [low-SI ASD]), or to the higher SI group (children with high social impairment [high-SI ASD]). We observed larger interpersonal distance (permeability) in both ASD groups compared to TD children. Moreover, depending on the nature of social interaction, a modulation of interpersonal distance (flexibility) was observed in TD children, both from the first- and third-person perspective. Similar findings were found in low-SI but not in high-SI ASD children, in Experiment 1. Conversely, in Experiment 2, no change was observed in both ASD groups. These findings reveal that SI severity and a person's perspective may account for the deficit observed in autism when flexibility, but not permeability, of personal space is considered

Promoting mental health and well‐being among adolescent young carers in Europe : a randomized controlled trial protocol

It is estimated that 4–8% of youth in Europe carry out substantial care for a familymember or significant other. To prevent adverse psychosocial outcomes in young carers (YCs),primary prevention resilience building interventions have been recommended. We describe thestudy protocol of an international randomized controlled trial (RCT) of an innovative group interventiondesigned to promote the mental health and well‐being of adolescent YCs (AYCs) aged15–17. The RCT will be conducted in six European countries in the context of the Horizon 2020European funded research and innovation project “Psychosocial support for promoting mentalhealth and well‐being among adolescent young caregivers in Europe” (“ME‐WE”). The ME‐WEintervention is based on Hayes and Ciarrochi’s psychoeducational model for adolescents and willconsist of seven 2‐h sessions in a group format, aimed to help AYCs build psychological flexibilityand live according to their values. The control group will be a waitlist. Primary and secondaryoutcomes and control variables will be measured at baseline (T0), post‐intervention (T1) and 3months follow‐up (T2). The COVID‐19 pandemic has made amendments necessary to the originalstudy protocol methodology, which we describe in detail. This study will contribute to building anevidence‐based manualized program that educators and health and social care professionals canuse to support AYCs in their transition to adulthood. From a research perspective, the outcomes ofthis study will contribute to evidence‐based practices in primary prevention of psychosocial difficultiesin AYCs and will gather novel knowledge on the effectiveness of Hayes and Ciarrochi’smodel for use with middle adolescents with caring responsibilities. The trial has been preregistered (registration number: NCT04114864)

Promoting mental health and well-being among adolescent young carers in Europe

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 innovative group intervention designed to promote the mental health and well-being of adolescent YCs (AYCs) aged 15–17. The RCT will be conducted in six European countries in the context of the Horizon 2020 European funded research and innovation project “Psychosocial support for promoting mental health and well-being among adolescent young caregivers in Europe” (“ME-WE”). The ME-WE intervention is based on Hayes and Ciarrochi’s psychoeducational model for adolescents and will consist of seven 2-h sessions in a group format, aimed to help AYCs build psychological flexibility and live according to their values. The control group will be a waitlist. Primary and secondary outcomes and control variables will be measured at baseline (T0), post-intervention (T1) and 3 months follow-up (T2). The COVID-19 pandemic has made amendments necessary to the original study protocol methodology, which we describe in detail. This study will contribute to building an evidence-based manualized program that educators and health and social care professionals can use to support AYCs in their transition to adulthood. From a research perspective, the outcomes of this study will contribute to evidence-based practices in primary prevention of psychosocial difficulties in AYCs and will gather novel knowledge on the effectiveness of Hayes and Ciarrochi’s model for use with middle adolescents with caring responsibilities. The trial has been preregistered (registration number: NCT04114864)

The awareness, visibility and support for young carers across Europe : a Delphi study

BackgroundAcross 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 exploring existing successful strategies to support YCs. Compared to YCs, even less is known about adolescent young carers (AYCs), a group that is in a critical life transition phase. The study forms part of an EU Horizon 2020 funded research project on AYCs aged 15-17years old.MethodsA two-round Delphi study was conducted with 66 experts on YCs from 10 European countries. Topics included: (i) visibility and awareness-raising of YCs at local, regional, and national levels, (ii) current interventions to support YCs, and (iii) future strategies to support YCs.ResultsExperts reported a lack of visibility and awareness about YCs in general, and AYCs in particular. Although awareness is slowly increasing in most countries, with the UK ranked highest, experts acknowledged that it remains challenging to identify YCs in many countries. Furthermore, the level and type of support available for YCs differs, with most countries mainly offering support on a local level. Diverse views were expressed regarding future strategies to support YCs. Experts highlighted the importance of specific legislation to formalise the rights of YCs, and the issue of whether young people should be safeguarded from caregiving or if this should be considered part of regular family life. They also emphasised the relevance of available integrated support services for YCs, including schools, family, health and social care.ConclusionsIn most European countries, there is a lack of awareness and visibility on YCs. Identification of YCs is a crucial first step and there is need for a common definition of YCs, together with greater opportunities for young adults to identify themselves as YCs