Abstract

SANTOS, Andreia Valentim; PEREIRA, José Diogo da Rocha; PANEQUE, Milena  and  COELHO, Vânia. The psychosocial experience of informal caregivers of people with paramyloidosis: A qualitative study. Psicologia [online]. 2021, vol.35, n.2, pp.45-62.  Epub Dec 31, 2021. ISSN 0874-2049.  https://doi.org/10.17575/psicologia.v35i2.1736.

This study aimed to explore the psychosocial experience of informal paramyloidosis caregivers. Semi-structured interviews were conducted with 22 participants recruited through a paramyloidosis support institution located in an endemic region in northern Portugal. The data were analysed using an interpretative phenomenological analysis. The results indicated themes and sub-themes interrelated with each other. Briefly, the knowledge related to the act of caring, which is acquired through previous experiences, is an ally for the current provision of care. However, the act of caring caused psychosocial impacts that enhanced the adoption of management strategies by the caregivers. Aiming to integrate the disease and its impacts, the caregivers reported experiencing different phases of the grieving process. As a result of the performance of this role, the caregivers identified needs that highlight the importance of intervention with this population, in order to mitigate or eliminate the negative psychosocial impacts resulting from the act of caring.

Keywords : Care provision; Familial amyloid polyneuropathy; Interviews; Psychosocial impact; Needs.

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