Chinese women living with cervical cancer- Health-related Quality of Life, Sense of Coherence, lived experience

Sammanfattning: Due to the unavailability of culture-appropriate measurements of health-related quality of life (HRQOL) in China, knowledge about the HRQOL of women with cervical cancer, particularly in Mainland China, is poor. Such knowledge is greatly needed to inform nursing practice. Thus the main aim of this thesis was to investigate longitudinally the HRQOL trajectory in Chinese women from when cervical cancer was diagnosed. The following inquiry into the lived experience of women with cervical cancer from the time of diagnosis to three months later aimed to capture the meaning of living with cervical cancer from the patients’ perspective, not using only standardized measures. In order to explore HRQOL in women with cervical cancer using a reliable measure, the Chinese version of the Functional Assessment of Cancer Therapy-Cervix (FACT-Cx), a well-developed instrument measuring HRQOL in western contexts, was administered to 400 women with cervical cancer in Mainland China, to test its internal consistency, construct validity and known-group validity, of whom, ten women were meanwhile interviewed personally for their viewpoints of the scale and the items included in it. The results support its suitability for use with women with cervical cancer in Mainland China although the cervical-cancer-specific subscale (CCS) needed further investigation to evaluate if loss of reproductive ability was perceived as such a significant aspect by women with cervical cancer in Mainland China that it needed to be included in CCS. It also remained a challenging task to improve the acceptability of sex-related items in the scale in the Chinese population. The Chinese version of the Sense of Coherence scale was also assessed for its psychometric properties in 238 women with cervical cancer in Mainland China since it was hypothesized that Sense of Coherence (SOC) is related to HRQOL, as suggested by some previous studies, and the scale had not before been used in populations with illnesses in Mainland China. The results show that the factor validity, predictive validity and divergent validity of the Chinese version were reasonable, as was its internal consistency. It was therefore regarded as suitable for use with women with cervical cancer in Mainland China although SOC might have a different meaning for Chinese people because of the philosophy and culture that shape the context of their lives. Using the proven instruments, 187 women were followed to assess their HRQOL at the time of the cancer diagnosis, and three, six, and nine months subsequently. Stepwise regression for HRQOL was undertaken to identify the factors contributing to HRQOL at the four time points respectively. The results demonstrate that functional wellbeing remained at a lower level throughout compared to the other domains of HRQOL (physical wellbeing, social/family wellbeing, emotional wellbeing, and CCS), overall HRQOL improved over time but social/family wellbeing deteriorated throughout. SOC contributed to HRQOL at the time of diagnosis, whereas disease stage and family support did so later on. Finally the experience of living with cervical cancer during the first three months after diagnosis was explored using a descriptive phenomenological method. Fourteen participants were interviewed at the time of diagnosis, of whom ten were interviewed again three months later. The lived experience was understood as a “sudden life transition” triggered by the diagnosis of cervical cancer. Cultural and societal contexts played a role in the participants’ adaptation to the situation. The “sudden life transition” provided an explanation for the lower HRQOL level in the quantitative investigation sample. Their desire to return to their previous life and renewed positive attitudes to life seemingly anticipated the positive trend in their future HRQOL, which corresponded to the higher scores for FACT-Cx at six and nine months after diagnosis. In addition, their hiding the diagnosis from their original extra-family social network and seemingly keeping their “distance” from medical professionals also explained why social support outside family did not contribute to their HRQOL, as shown in the investigation. The findings of this thesis can inform nursing practice. Firstly the patients’ functional wellbeing should be given more attention because of its relatively low level. Nurses may play an important role in helping to restore function, both physically and psycho-socially. Secondly, clinical interventions to improve HRQOL should be designed based on factors that contribute to HRQOL in different phases. At the time of diagnosis, nurses should identify those patients with a low SOC and provide emotional support. As time goes by, support should be focused more on the patients in the advanced disease stages as they face increasingly negative consequences from the disease and radical treatments. Family members should always be included in the entire caring process as they constitute a critical source of social support for Chinese women with cervical cancer.