End-of-life trajectory of coping and self-care of patients with idiopathic pulmonary fibrosis: A meta-synthesis using meta-ethnography.

AIM: This study aimed to extract patient narratives regarding the end-of-life trajectory of their self-care and coping experiences as patients with idiopathic pulmonary fibrosis and to use meta-ethnography to discover common metaphors of their experience in order to inform the development of nursing interventions.

METHODS: A comprehensive search of qualitative research using electronic databases, in English and Japanese, regarding patients with IPF, identified four articles. The meta-ethnography approach followed seven steps, which provided a synthesis of the phenomena from both comparative and cumulative analyses of the qualitative data.

RESULTS: Seven key concepts and metaphors were synthesized: (i) an extended period before obtaining a diagnosis ("Waiting for the other shoe to drop"); (ii) suffering as the pathway of illness ("Gloom and doom"); (iii) the burden of the symptoms and loss of independence ("Staggering under the load"); (iv) acceptance and living with the restrictions of home oxygen therapy ("A double-edged sword"); (v) changes in the family role ("All in the same boat"); (vi) existential suffering ("Dead-end streets and rays of hope"); and (vii) challenges to maintain independent living ("Making the best of it"). Reciprocal, refutational, and line-of-argument modes of synthesis revealed the relationships of the metaphors. Meta-ethnography provided a mechanism for a cumulative knowledge base for necessary nursing interventions.

CONCLUSIONS: The critical nursing interventions were: the relief of symptoms, particularly dyspnea and cough; coordinating lifestyle changes; providing psychological support for living with an illness beginning from the time of diagnosis; and carefully starting the end-of-life discussions with patients and families.