Developing A Caregiver Burden Scale For Cancer Patients And Evaluating Its Effects

The diagnosis of cancer and its treatment affect not only the patient but also their close family caregivers. Due to the fact that the family caregivers of cancer patients need to meet multidimensional demands, such as monitoring; treatment-related symptom assistant; emotional, financial, and spiritual support; and assisting with personal and instrumental care, the caregiving role to the cancer patients can be highly stressful and can lead to considerable psychological, social, economical, and health burden for the family caregiver. Comprehensive assessment of caregiver burden will be beneficial to provide effective interventions for family caregivers. However, there is no consistent understanding of measurement or scale for caregiver burden, particularly in the textual of Chinese culture. Therefore, we proposed and developed a caregiver burden scale for cancer patients. Furthermore, the effects of this scale have been tested and evaluated.Objectives: 1. Designing and developing a caregiver burden scale for cancer patients(CBS-CP), which is applicable for the patients with Chinese cultural background. 2. Exploreing its scientific and applicable evaluation. 3. Formulating the structural equations for predicting the factors that impact caregiverburden for cancer patients. 4. Investigating the correlation among varies factors between cancer patients and family caregivers, and providing a scientific evidence for improving both cancer patients’ and family caregivers’ quality of life.Subjects and Methods: This is a mixed method study that includes both qualitative and quantitative approaches. Two phases are included in the present study: in phase one, the CBS-CP was developed; in phase two; the evaluation of CBS-CP was conducted. The subjects and methods were varied in different research phases. 1. Qualitative research: focus group and purposive sampling method were applied during the interview process of 24 family caregivers of cancer patients. Conventional approach to content analysis was used to analyze the data. 2. Pre-survey: convenience sampling method was applied to conduct the data collection of 150 family caregivers of cancer patients. The related methods, such as exploratory factor analysis(EFA), were used to examine the validity, and reliability of the CBS-CP. 3. Formal investigation: A multicenter convenient method was used to collect a sample of cancer patients-family caregivers paired data, with a total of 641 valid subjects. The data was used to further investigation of its scientific and applicable evaluation. The statistical methods used in this stage included: exploratory factor analysis(EFA), confirmatory factor analysis(CFA), regression analysis(RA), the path analysis(PA), structural equation modeling(SEM), and latent class analysis(LCA).Results: 1. Qualitative research results. Four themes and 16 subthemes emerged after a conventional content analysis. The four themes are coping and living with changes, meeting the special needs for caring cancer patients, communication dynamics, and network of support. 2. Pre-survey results. Scale-level content validity index(S-CVI) value of CBS-CP-2 is0.936 and item-level content validity index(I-CVI) values were greater than 0.875 for all items. EFA analysis showed that: five factors were identified to achieve a five-dimensional conceptual framework of caregiver burden concept. The factor loading for all items ranged from 0.486~0.803. The cumulative total variance of the five factors was 71.6%. The test-retest reliabilities of both the total scale and the five factors were above 0.7. Apart from the factor 5, the split-half reliability and Cronbach α coefficient of each scale and factor were above 0.8. 3. Formal investigation results. First, we expanded scientific evaluation of CBS-CP-3.(1) Factor analysis: five-factor model of CBS-CP-3 can explain 63.8% of the total variance. CFA showed that the correlation coefficient among the five factors ranged from 0.52 to 0.85, which was statistically significant(P <0.01). The final CFA model fit well with data, normed fit index(NFI) = 0.959, non-normed fit index(Tucker &Lewis’ s Index, TLI) =0.902, comparative fit index(CFI) =0.962, root mean square error of approximation(RMSEA) =0.059<0.06.(2) Reliability Evaluation: the split-half reliability total scale was 0.817; the split-half reliability of four factors(F1, F2, F3, F4) were greater than 0.7, with the exception of the factor 5(which was 0.637), indicating a good split-half reliability. All the total scale and the corresponding Cronbach α coefficient were greater than 0.65, which was within the range of acceptable standard and indicating that the internal consistency of the scale is good.(3) Criterion-related validity: the total scale of CBS-CP-3 and its five factors were significant positively related to depression and anxiety. Also, they were negatively related with both physical and mental health composite scores(PCS and MCS) of SF-12. In the second phase, the application evaluation of CBS-CP was conducted.(1) Constructing SEM for predicting the factors that impact caregiver burden for cancer patients. Factors identified in this model include both caregivers and patients factors. Caregiver factors included: age, relationship with the patient, health status, anxiety, and depression, PCS and MCS of SF-12; Patient factors included: type of cancer, the financial burden, relationships with family, patient self-efficacy, anxiety, and depression.(2) Applying Path analysis of SEM to explore the effect of caregiver burden on quality of life of both caregivers and patients. The path analysis SEM showed that caregiver burden can not only directly affect the quality of life of both patients and caregivers, as well as acts as an indicator to mediate the impact of other variables, such as caregiver anxiety, depression and benefit finding, on quality of life of both caregivers and patients.(3) Performing LCA approach for indentifying factors related to caregiver burden. The LCA results showed that the latent class model of this study was reasonable and could be explained in the context of Chinese culture. For instance, LCA analysis showed that with the increasing understanding of the disease in caregivers, the caregiver burden showed a declining trend gradually. However, in patients with different degrees of understanding of the disease, the impact on caregiver burden was more complex and there was no simple linear relationship.Conclusions: 1. Based on the findings from the qualitative analysis, a conceptual framework was able to build up. This result is not only conducive to a better understanding of the true experience of family caregiving for cancer patients, but also to benefit the development of the CBS-CP, which enable the CBS-CP reflect the real situation of Chinese cultural background. 2. The CBS-CP was developed in accordance with the relevant procedures. The reliability, validity, responsiveness and other quantitative evaluation results of the scale were met the requirements. Eventually, the CBS-CP-3 was proposed. The CBS-CP-3 is a reliable measuring approach with good reliability and validity, which can be used as an assessment tool for caregivers of cancer patients with Chinese cultural background. 3. The SEM formulated in this study in predicting the factors that impact caregiver burden for cancer patients indicated that: in order to reduce caregiver burden, caregivers and patients should be considered as a unit. There is a mutual effect existed between caregivers and patients. Therefore, the clinical professionals should have a holisticviewpoint and take the caregivers and patients as their target population when developing and delivering intervention for reliving caregiver burden and improving their quality of life. 4. The finding of path analysis in SEM gives the supportive evidences for the conclusion of SEM analysis above in that the reducing the caregiver burden can improve the quality of patient care and the life of those who speculate. Therefore, in order to improve the quality of life of both the patients and caregivers, more attention should pay to and strengthen the research on caregiver burden. 5. This study is the first application of LCA methods for analyzing the dyadic data from caregivers – cancer patients. The results showed that the LCA classification results can be elucidated based on the Chinese cultural background. The results thus provide clear and trustworthy evidences in targeted clinical interventions and make interventions more scientific and effective. In summary, this study applied mixed methods, which included qualitative and quantitative approaches. Two phases are included in the study: development and evaluation of the CBS-CP. The proposed CBS-CP-3 can serve as a reliable assessment tool for caregivers’ burden for cancer patients in the context of Chinese cultural. The constructed SEM can be used to guide the formulation and implementation of interventions to improve quality of care, and ultimately to improve quality of life of both patients and family caregivers of cancer patients. LCA analysis results further support the above point of view. The findings also further showed that the proposed CBS-CP-3 is applicable and suitable for Chinese cultural based society.