In Europe, 80 per cent of care for people with chronic illness and disability is provided by informal carers – people who provide care to others in need of assistance or support on an unpaid basis. While caring for a loved one can be an enriching and rewarding experience, it does create its own set of challenges. These can include mental, emotional and physical health problems, social isolation, difficulty balancing paid work with caring responsibilities and a higher risk of poverty.
Chronic illness place a set of demands not alone on the primary carer, but on the family system. The course of the illness will determine the level of caretaking and reorganisation of the family. Families caring for an older person in physical and/or cognitive decline are faced with increased caretaking demands over a long period, of time with limited community resources to support them. Members of a family – spouse, adult children, grandchildren, will take on diverse roles leading to different experiences and perspectives on the burden of care. While the caregiving experience for each family member is different, all will encounter a change in the social relations between their spouse, parent or grandparent. A functional relationship among family members is key to successful change of roles and adaptation of the family. Establishing a new balance is influenced by the meanings families attribute to their situation.
The stress of a chronic health condition or disability in a family member therefore can cause problems in a family, particularly if the different caregivers within the family attempt to deal with his or her feelings alone and without support. The ability to communicate effectively is a critical aspect of healthy functioning families. Communication is even more important where chronic illness is present as there are more problems to be solved and care giving tasks to be undertaken. One of the primary threats to communication is the repression of affect, when family members suppress negative feelings like being overwhelmed, guilt, uncertainty, conflict and confusion within relationships associated with their situation. Being able to openly express these feelings and share emotions can build care givers’ resilience. Sharing the complex realities faced by persons who have experienced comparable situations and the feeling that they are not alone in their experiences or emotions has been found in previous research to be beneficial to dementia caregivers (Greenwood et al. 2013). Hence providing informal carers with an opportunity to share their personal experiences within a supportive empathetic community can help to resolve complex deep root emotions such as guilt, fear and conflict.
S.IN.CA.L.A seeks to provide this opportunity to family carers – spouses, adult children, grandchildren- through the development of a carer support programme based on a narrative approach. The goal of this intervention is to support different family members – spouses, adult children and grandchildren- providing care and support to an older person to express their inner thoughts and feelings in a safe non-judgemental space; thus making families resilient in how they cope with the challenges caring brings.
From a family resilience perspective, families are regarded as a unit with intrinsic strengths and resources and potential for growth (Black & Lobo 2008; Zausziewski et al., 2010). Positive relational bonds and connections between family members are integral to maintaining their ability to weather adversity (Walsh, 2006). Resilience can be strengthened through dedicated pedagogical methods such as therapeutic narrative.
Therapeutic narrative approaches provide a structured opportunity to elicit individual narratives of family members, assemble divergent storylines into a shared family narrative, and thereby enhance members’ capacity to make meaning of stressful experiences and adopt beliefs that support adaptation and growth. (Saltzman et al. 2013) Narrative learning falls under the larger category of constructivist learning theory, which understands learning as construction of meaning from experience. Narrative Learning highlights the role of narrative and narration in an individual learning and an understanding of how they act in the world. The ‘interior conversations’ whereby a person defines their personal thoughts and courses of action and creates their own stories and life missions, is situated at the heart of a person’s map of learning and understanding of their place in the world.
The objectives are:
• To develop and test a pedagogical method based on narration, adapted to different EU country contexts, targeting households caring for older family members with the goal of building family resilience to maintain capacity to care.
• To provide informal carers with an opportunity to participate in an intervention designed to help them face challenges associated with their caring role, helping them make meaning of stressful experiences and adopt beliefs that support adaptation and growth.
• To make available to educators and professionals working with family carers the S.IN.CA.L.A E-Learning course based on the learning from the research, the model of pedagogical intervention developed and piloted to inform a methodological guide and MOOC. This E-Learning course will extend and develop educators’ competences and improve and extent the supply of high quality learning opportunities tailored to the needs of informal carers.
The target groups to be addressed are:
• Informal carers which includes all members of households with caring responsibilities for older adults – spouses, adult children, grandchildren.
• Adult Educators and Professionals including psychologists, nurses, social workers, community workers, home care workers.
The S.IN.CA.L.A project will meet common need of all EU countries: to address the challenge of providing care and support to an ageing population, particular among the older old (80+). In all countries, there will be a need for an increasing number of families to provide care. To achieve this, policy and supports for family carers will be imperative. S.IN.CA.L.A will provide an intervention programme that can be used by professionals working with family carers to support them build resilience to maintain capacity to care.
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