In Europe, 80% of all chronically ill people are taken care of by informal carers – people who provide unpaid care outside of a professional or formal framework. While caring for a loved one can be a source of great personal satisfaction, it also creates challenges, like physical and mental health problems, a feeling of social exclusion, difficulty in balancing paid work with care responsibilities and other possible financial worries (Eurocarers).
Although when a family member has a chronic illness or disability one of the relatives often acts as the “primary care provider”, in which roles are often reversed (i.e. a child taking care of their parent) which often affects all family members (Wright and Leahey, 2000). A functional relationship among caregivers and care recipient is the key for a successful change of roles and the adaptation of the family, therefore, supporting only the primary carer is not enough. Furthermore, people belonging to different age groups and with different kinships to the care-recipient (young/adult children, grandchildren, spouses) can have different experiences and perspective on the burden of care, so it is necessary to take all of them into account in order to be able to provide comprehensive and effective support. Research has also demonstrated that the caregiver stress that often arises in informal caregiving situations can lead to situations of abuse. Almost 10% of older people who are cared for by family caregivers are at risk of elder abuse (Ananias, Strydom, 2014).
From a family-resilience perspective, families are regarded as a unit with intrinsic strengths and resources, and potential for growth (Black & Lobo 2008; Zauszniewski et al. 2010), with positive relational bonds and connections between family members being integral to maintaining their ability to weather adversity (Walsh 2006). However, it should be considered that resilient abilities are not innate, but can and should be learnt and cultivated through dedicated pedagogical methods, such as that of the therapeutic narrative.
In order to respond to all these needs the partnership believes in the importance of developing and piloting a model of pedagogical interventions based on a family-focused approach able to identifying strengths as well as vulnerabilities of all family members, addressing the challenges that might arise from the disease and building individual and family resilience.
The educational tools developed will be based on experiences carried out in Greece, by Alzheimer Hellas, and will be adapted and transferred to all other country contexts. The main practical results expected on the completion of the project are:
(1) a tested narrative based workshop for informal caregivers, adapted to different EU-country contexts, and targeting households who are caring for older dependent family members with the goal of increasing their family-resilience;
(2) guide for professionals to identify and address issues that emerge from workshops;
(3) a MOOC, to transfer the results achieved and the lessons learnt to a wider audience of professionals;
(4) E-course and online educational platform for informal care givers and professional support providers.
We therefore expect to make available a methodology that educators, social workers and carer support workers can use in their local contexts to engage with families with caring responsibilities in order to improve the resilience of the household and mitigate the negative impacts of caring in the households.
The project is coordinated by NPO Women’s Support and Information Center (domestic violence org, Estonia) and developed by a diverse partnership of NGOs working with older persons and their carers or domestic violence victims in Portugual (CASO50+), Italy (Anziani e non solo), Slovenia (Spominčica, Slovenia) and Union of Women’s Association in Heraklion Prefecture (Greece, Creta). The expert partner, is the Greek Association of Alzheimer’s Disease and Related Disorders (Alzheimer Hellas). University of Tartu will be responsible for developing & managing the MOOC for the project due to its strong expertise on designing and developing e-learning courses.
For professionals and stakeholders, we expect an increased consciousness of how providing care can impact on the whole family and the capacity to use this deeper understanding to improve and innovate their services, including through the introduction of narrative techniques. On local stakeholders and communities, we expect an increased awareness of the challenges of caring at societal level and on innovative experiences and practices carried out in other countries that could be of inspiration for new policies and services. We also expect increased openness towards other European countries and cultures, increased awareness of the importance to adopt a whole-family approach and an increased awareness about the contribution of the European Union activities towards the support to informal carers.