Engelsk titel: Living with cystic fibrosis - a lonely, lifelong work
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Författare:
Homme, Jorunn
;
Saeter, Berit
Email: UXJOMM@ous-hf.no
Språk: Nor
Antal referenser: 37
Dokumenttyp:
Artikel
UI-nummer: 14033737
Sammanfattning
The purpose of this qualitative study was to illuminate existential challenges in a group of adults with cystic fibrosis (CF). Data were collected through qualitative interviews with 23 adults with CF between 19 and 44 years. A hermeneutic approach was used to interpret the data. Kvale’s levels of interpretation were applied in the interpretation process. The results are summarized in three topics: The desire to live a normal life in spite of all the time and efforts they spent on their treatment, visible and invisible suffering, and the relationship with their helpers. The patients suffer because of the existential challenges, such as concerns for the future and the progress of the disease, loss of life possibilities, guilt and shame and concerns about death. In order to protect themselves and others the patients did not voice these concerns and their suffering was hidden. For some of the patients these interviews were the first time they spoke openly about their concerns. The health professionals need to a greater degree to treat the patients as whole human beings and to address their existential concern. Regular conversations with the nurse about these issues may be a positive supplement to the medical treatment.