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Patients’ associations for familiars and caregivers: a project work to examine the role and the importance of associative realities

Mostly Sunny – Paul Bond

Mostly Sunny – Paul Bond

We present “The importance of patients’ associations for familiars and caregivers”, project work conducted by Maddalena Pelegalli (vice president of the Association for People with Rheumatic Diseases – A.P.MA.R.) and Tiziana Lo Monaco (social worker for the Association Pigna d’Oro Onlus) during the third edition of the Master in Applied Narrative Medicine.

Even if with different roles in their associations, the two participants decided to work together in a project able to examine, through narrative, associations’ role in the everyday life of familiars and caregivers assisting loved ones in the care path for a chronic disease or in a condition of disability. To have a sick person in the familiar context, indeed, involves the entire reference nucleus: associations can support practically and psychologically these families.

Twenty narratives of familiars were collected through a semi-structured track, in order to get a scenario of their experiences, to comprehend their needs and expectations, and to understand the importance and the influence of patients’ associations for these people, how much their support can influence familiar well-being. Furthermore, the project work represented a precious occasion to unite through narrative several associative realities, giving value to peculiar and good communal practices. In particular three associations were involved: A.P.MA.R. e MA.CRO.IN. (Rome) and Associazione Pigna d’Oro (Catania).

Narratives were analyzed through the identification of Narrative Medicine classifications, and highlight a strong influence by the social context. “Roman” narratives underline a certain level of positivity, with an usual burden of care – probably due to the fact that Rome is the central pole of institutions, so there is more simple to access their “vertex”. This situation is not present in the other narratives, from which emerge instead a sense of abandonment by institutions: families feel completely alone, without coping strategies and with a burden of illness conditioning their lives, feeding more and more their worries for a difficult future.

Among several contexts and experiences of care paths and burdens, associations represented precisely the point of union of narrated lives, for the importance of the support they give and for what they represent for familiars: a support, a place of aggregation, of sharing of experiences and information; an occasion to grow, a source of hope, for someone a responsibility helping in finding a sense, and often even a second family. A precious and uncontested role for all, for who faces a chronic disease and for who everyday lives the burden of a disability and find the strength to go on, often thanks to associations’ contribution.

A significant experience not only because here familiars, often forgotten or considered expected in a care path, are protagonist, but also for the joining forces Narrative Medicine allowed between several associations: now they know each other, and maybe could start a new communal path, to give more value to their own activities.

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Degree in Natural Science at University of Turin, Italy. Project Manager and trainer at ISTUD – Health Care Area since 2010. Expert in health care organizational research and in the approach with Narrative Medicine, applied to national and international projects to analyse the organization and quality of pathways of care. Coordinator of training programmes ECM accredited (Continuous Medical Education system) addressed to health care professionals, as trainer and tutor. Coordinator of European projects, Lifelong Learning Programme funded, with a specific focus on storytelling. Collaboration with the Italian Society of Narrative Medicine and with international universities. Participation as speaker at several congresses promoted by scientific societies and Health Authorities.

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