Informal carers in paid work are known as working carers (WKCs). This combination of care and work is particular to them, and their support needs may differ from other informal carers. This exploratory study describes the caregiving-related factors associated with experiencing caregiving as demanding and a decreased ability to work in WKCs. The Swedish National Carer Survey was conducted in a stratified random sample (N = 30,009) of the population (≥18 years) between October 2018 and January 2019. Of 11,168 respondents, 818 (7.32%) met the study criteria for WKCs, i.e. they provide informal care to another person on a regular basis, and they work full time. Almost half (49.3%) of WKCs report experiencing caregiving as demanding, while 40.4% indicated that their ability to work had been reduced due to providing informal care. Two ordinal logistic regression models were developed, one each for caregiving is demanding and ability to work is decreased. Psychological stress and financial problems caused by caregiving increased the odds of both experiencing caregiving as demanding and having one’s ability to work decrease, while finding caregiving satisfying decreased the odds of both. Further research is needed to establish how caregiving-related factors affect WKCs in both their care and working roles.

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 provision and received support among Swedish WKCs.

Research method/Design

The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire addressed the type and extent of informal care provided, support received and the impact of care provision on employment. Of the 30,009 people who received the questionnaire, 11,168 (37.3%) responded, providing an analytic sample of 818 (7.32% of respondents) employed or self-employed informal carers.

Findings

A typical Swedish WKC was a middle-aged female, providing weekly or daily care to a non-cohabitant parent, who experiences care as sometimes demanding and receives no formal support as a carer. Female WKCs were more likely than males to care alone and with higher intensity, to report a need for help in meeting their care-recipient’s needs, and to experience care as demanding. Approximately 17% of WKCs reported their employment had been affected due to caring, 40% their ability to work, and 31% their career development opportunities. Female WKCs’ ability to work was affected more than males’, and they were more commonly prevented from applying for work.

Conclusion

Swedish female WKCs compared to males provide more hours of informal care, across more care domains, more often alone. This places them in a challenging situation when combining paid work and care. Greater recognition of the challenges faced by WKCs is required in Sweden and other countries, as are policies to reduce gender inequalities in informal care provision in this group.

Aims To describe nurse anesthetists' attitudes towards the importance of parental presence during their child's anaesthesia induction and to explore associating factors. Design A cross-sectional design. Methods Nurse anesthetists from 55 Swedish hospitals were asked to participate (n = 1,285). A total of 809 completed the questionnaire, Families' Importance in Nursing Care-Nurses' Attitudes (FINC-NA) during 2018. Data were analysed by descriptive statistics and multiple linear regression analysis. Results Nurse anesthetists generally had a positive attitude towards the importance of parental presence. They reported a more positive attitude in family as a resource in nursing care (median = 40) followed by family as a conversational partner (median = 25), family not as a burden (median = 17) and family as its own resource (median = 13). Multiple linear regression analyses showed that working in a district hospital, working only with children, having routines/memorandum about parental presence, being a woman, allowing both parents to be present in their child's anaesthesia and greater experience of children's anesthesia, were associated with a more positive attitude. Conclusion This nationwide survey contributes important knowledge for understanding nurse anesthetists' attitudes and the result shows that nurse anesthetists generally have a positive attitude towards the importance of parents. Areas of improvement were, however, identified; the nurses tend to not value family as its own resource and family as a conversational partner highly. Impact Nurse anesthetists have a crucial role in children's anesthesia care since the quality of parental presence experience depends on a positive attitude from the nurses. Parental involvement is important to establish a child-centered anaesthesia care, which should be highlighted in the education of nurse anesthetists. Parental involvement should also be addressed in healthcare policies and routines should be established.

Aims and objectives To interpret and understand the interplay between children, their parents, and anaesthetic staff to gain a greater understanding of children being anaesthetised. Background Anaesthesia induction is a stressful procedure for the child and parents in the technologically advanced environment in the operating room (OR). Anaesthesia staff are a key resource for ensuring safety and interplays, but the meeting is often short, intensive, and can affect the child and the parent. Design A qualitative observational design with a hermeneutic approach. Methods Twenty-seven non-participant observations were conducted and videotaped when children were being anaesthetised. The SRQR checklist was used. Results The result is presented as a theatre play with three headings; the scene, the actors, and the plot. The scene was not designed for the child or the parent's comfort and could lead to anxiety and insecurity. Four themes described the interplays: The need to be inviting and to be invited, The need for varying compliance, The need for mutual dependence, and The need to give and to receive emotional support. The plot could lead to uncertainty, and the interplay could change between being caring and uncaring depending on the actors. Conclusions The technologically advanced environment in the OR constituted an emotional obstacle, but the anaesthesia staff themselves can be a powerful resource creating a caring environment. The outcome of the plot may depend on the anaesthesia staff's bearing. Relevance to clinical practice A caring approach in the OR requires a willingness from the anaesthesia staff to invite the child to participate and find a balance between helping the parents to find their place in the OR and support them in supporting their child. The findings can start reflections in the unit on how to create a more caring environment.

In 2010, a rather unique legislation was introduced in Sweden that healthcare professionals must pay special attention to children-as-next-of-kin and their needs for information, advice, and support. Based on that, between 2011 and 2020, the National Board of Health and Welfare (NBHW) has had a governmental commission to promote developmental work focused on children-as-next-of-kin. The work has been carried out in close collaboration with other national and regional authorities as well as competence centers. Through increased knowledge and the construction of sustainable structures, both social and health care services have received support in order to better apply a child- and family perspective in their work with families facing different difficulties.

Through the assignment, the NBHW has had a strategic collaboration with the Swedish Family Care Competence Center (SFCCC), a national competence center for the support of informal carers, together with the Linnaeus University. Since 2012, the SFCCC has received special funding from the NBHW in order to develop its work focusing on children-of-next-of-kin. The assignment including producing and disseminating knowledge, working with exchange of experiences, systematic follow-up and learning networks. The goal is to increase knowledge about children-of-next-of-kin among politicians, decision-makers and professionals in regions, municipalities, scholars, and NGO’s, and giving empowerment to identify, listen to and support children-as-next-of-kin. This presentation is about what we have done so far.

Children-as-next-of-kin have received little attention during the Covid-19 pandemic, and it is unclear how these children have been affected by the pandemic. There is thus an urgent need to better understand their situation and to develop creative solutions to ensure good quality support. Present study is funded by the National Board of Health and Welfare, and the aim is to describe how professionals working with children-as-next-of-kin experiences that the situation and support systems for children-as-next-of-kin are affected by the pandemic, and how the support can be further improved. 

In the autumn of 2020, focus group interviews were conducted digitally with participants (n=45) from four Swedish national networks; within county councils, municipalities, researchers, and NGOs, working with children-as-next-of-kin. The interviews lasted for 1,5 hours, were recorded, transcribed, and analysed using content analysis.

The result shows that children-as-next-of-kin have become increasingly invisible during the pandemic, partly due to public restrictions, preventing children from accompanying or visiting their sick parents. Cancelled support groups, decreased social networks, increased anxiety as well as care responsibilities are the main themes brough up by the professional, often affecting children-as-next-of-kin studies. Furthermore, fear of contagion prevents carers or the next-of-kin to use the support still available. New support for children-as-next-of-kin has been developed, mostly digital or outdoor activities. 

Urgent suggestions concern increased knowledge among professionals about children-as-next-of-kin as well as increased digital competence. In the long run, support to children-as-next-of-kin during crises need to be secured by crisis management plans, local routines and follow up policies.

A considerable proportion of young people across Europe carry out a critical role in caring for their ill and/or disabled family members^[1]. Being a Young Carer (YC) is recognised as a risk factor for social exclusion, higher absenteeism and drop-out rates from education, low employability, social stigma and bullying^[2]. Teachers and school staff are usually not aware of the frequency of YCs and are not always able to identify YCs in their class. Therefore, the main goal of this EU Erasmus+ programme co-funded project was to empower teachers and other school staff in upper secondary education (ISCED-3 level) to recognise adolescent YCs (16-19 years old) in classes and maximise their learning opportunities. The Eurocarers consortium consisted of researcher and carer organization members in the partner countries of Sweden (coordinator), Slovenia, Italy and Portugal together with Eurocarers secretariat.

The specific objectives were to develop:

• an assessment tool to identify YCs;
• educational strategies, didactical approaches and organisational adjustments to support YCs in their scholastic career;
• a handbook on how to work at best with YCs;
• a massive open online course (MOOC) about YCs, their needs and preferences.

The achieved project outcomes, consisting of the above tools and strategies, can help to raise awareness of YCs’ needs, empower school staff to recognise and keep YCs involved in school and lead to a new attitude of YCs, which in turn can influence other stakeholders and organisations. Further, the concrete project outputs can help lead to new opportunities for peer recognition and awareness of YCs among school pupils themselves, to help make YCs more comfortable at school, satisfied with education, avoid drop outs, increase their educational and social environment and attempt to combat YCs’ social exclusion, loneliness, social stigma and any unmet educational and support needs. All materials are available in English, Swedish, Italian, and Portuguese^[3].

^[1] Leu, A., Frech, M., Wepf, H., Sempik, J., Joseph, S., Helbling, L., & Jung, C. (2019). Counting young carers in Switzerland–a study of prevalence. Children & Society, 33(1), 53-67.^[2] Becker, S., & Leu, A. (2014). Young Carers. In. Oxford Bibliographies in Childhood Studies. Heather Montgomery (Hrsg): Oxford University Press.^[3] All materials and results are available at the EDY-CARE project web page: https://eurocarers.org/current-projects/edycare/