“A peculiar time in my life”: making sense of illness and recovery with gynaecological cancer

Purpose: Worldwide there are nearly 1.1 million new cases of gynaecological cancer annually. In England, uterine, ovarian and cervical cancers comprize the third most common type of new cancer in women. Research with gynaecological cancer patients within 6 months of diagnosis is rare, as is data collection that is roughly contemporaneous with treatment. Our aim was to explore the experiences of women who were, at study entry, within 6 weeks of surgery or were undergoing chemotherapy or radiotherapy. Methods: An interpretative phenomenological analysis (IPA) of data from 16 women in five focus groups was conducted in the UK, exploring women’s experiences of being diagnosed with and treated for gynaecological cancer. Results: Participants conceptualized their experiences temporally, from the shock of diagnosis, through their cancer treatment, to thinking about recovery. They tried to make sense of diagnosis, even with treatment being complete. In the context of the Self-Regulation Model, these women were struggling to interpret a changing and multi-faceted illness identity, and attempting to return to pre-illness levels of health. Conclusions: This study adds to this under-studied time period in cancer survivorship. The results suggest that survivors’ goals may change from returning to pre-illness status to reformulating goals as survival time increases.N/

Development and psychometric properties of a five-language multiperspective instrument to assess clinical decision making style in the treatment of people with severe mental illness (CDMS)

BACKGROUND: The aim of this study was to develop and evaluate psychometric properties of the Clinical Decision Making Style (CDMS) scale which measures general preferences for decision making as well as preferences regarding the provision of information to the patient from the perspectives of people with severe mental illness and staff. METHODS: A participatory approach was chosen for instrument development which followed 10 sequential steps proposed in a current guideline of good practice for the translation and cultural adaptation of measures. Following item analysis, reliability, validity, and long-term stability of the CDMS were examined using Spearman correlations in a sample of 588 people with severe mental illness and 213 mental health professionals in 6 European countries (Germany, UK, Italy, Denmark, Hungary, and Switzerland). RESULTS: In both patient and staff versions, the two CDMS subscales "Participation in Decision Making" and "Information" reliably measure distinct characteristics of decision making. Validity could be demonstrated to some extent, but needs further investigation. CONCLUSIONS: Together with two other five-language patient- and staff-rated measures developed in the CEDAR study (ISRCTN75841675) - "Clinical Decision Making in Routine Care" and "Clinical Decision Making Involvement and Satisfaction" - the CDMS allows empirical investigation of the complex relation between clinical decision making and outcome in the treatment of people with severe mental illness across Europe