Modesty and recognition--a qualitative study of the lived experience of recovery from anal cancer.

BACKGROUND: Anal cancer is a rare disease within the cancer spectrum. Long-term disabilities are notable and place increased demands on rehabilitation. AIM: The objective of this study was to describe the lived experiences of recovery from anal cancer, including which and how resources may help survivors of anal cancer to resist and to manage potentially complex stressors encountered in the recovery from the disease.
DESIGN: A qualitative, salutogenetic-oriented, phenomenological study was conducted based on audio-taped, semi-structured interviews.
METHODS: Interviewee selection was carried out through purposeful sampling. Sixteen individuals (11 women and five men; average age 52 years), who had completed therapy for anal cancer (average 31 months ago), participated in the study. Transcripts from the audio-taped interviews were used for qualitative text condensation analysis, inspired by Giorgi's phenomenological methodology.
FINDINGS: The analysis revealed two concepts, modesty and recognition, which describe the essence of the lived experience of anal cancer, and which each appear to be important resistance resources. While modesty is regarded as an enforced and necessary competence developed and mastered by the individual, recognition refers to a desired, but often lacking, resource in the individual's interaction with health authorities and relatives. DISCUSSION: Anal cancer appears to lack attention and deserved recognition from professional and social services, which in itself may lead to mistrust and devaluation of the individual seeking support. It is recommended that both researchers and rehabilitation services incorporate, prioritize, and advise on the disease's specific issues and the terms under which the survivor can maintain an active, working and social life, as desired.