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Caring for a child with a progressive illness during the complex chronic phase: parents’experience of facing adversity
Author(s) -
Gravelle Anna M.
Publication year - 1997
Publication title -
journal of advanced nursing
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.948
H-Index - 155
eISSN - 1365-2648
pISSN - 0309-2402
DOI - 10.1046/j.1365-2648.1997.1997025738.x
Subject(s) - conceptualization , qualitative research , psychology , phenomenology (philosophy) , developmental psychology , medicine , nursing , sociology , social science , philosophy , epistemology , artificial intelligence , computer science
This qualitative study explored the day‐to‐day experiences of parents caring at home for a child with a progressive life‐threatening illness at a certain point in their illness trajectory. This point in the trajectory is when the child lives with a complex chronic condition, and is in need of specialized and time‐consuming care, but is not yet in a terminal phase. The naturalistic research design of phenomenology was chosen for the study's methodology. Parents’experiences of caring for their child were conceptualized as an ongoing process of ‘facing adversity’, as parents had continuously to redefine and then manage those changes resulting from the progressive nature of their child's condition. Concepts of normalization and chronic sorrow are considered in the conceptualization, as are the challenges of caregiving (particularly of mothers) who faced many hardships in their role, including the myriad of changes related to the increased burden of care. Implications for nursing practice are identified.