| Author: | Wang, Tao |
| Title: | Palliative care needs of patients with advanced cancer and their informal caregivers in China |
| Advisors: | Molassiotis, Alex (SN) Chung, Pui Man Betty (SN) |
| Degree: | Ph.D. |
| Year: | 2020 |
| Subject: | Palliative treatment -- China Cancer -- Palliative treatment -- China Cancer -- Patients -- Care Caregivers Hong Kong Polytechnic University -- Dissertations |
| Department: | School of Nursing |
| Pages: | xxv, 422 pages |
| Language: | English |
| Abstract: | Background: Cancer is one of the leading causes of death in China, and a majority of the patients are already at an advanced stage at the time of diagnosis. Despite the advances of cancer treatment, cancer patients, particularly those at an advanced stage, and their informal caregivers still suffer from a wide range of undesirable distress. There has been a significant demand for palliative care to relieve cancer patients' distress and improve their quality of life. However, the development of palliative care in China is still at an initial stage. There is much room for improvement; hence, more rigorous studies are needed to provide more high-quality evidence and to persuade policymakers of the benefits of palliative care. Palliative care needs assessment is the first step that should be addressed given that appropriate and ongoing needs assessment within this context could support the development of evidence-based and tailored intervention protocols and the establishment of culturally tailored palliative care services. Aim and objectives: The overall intention of this project was to provide preliminary evidence to researchers and policymakers in relation to developing tailored palliative care interventions and services to better meet the palliative care needs of Chinese patients with advanced cancer and the needs of their informal caregivers. This doctoral research project proceeded in two phases. Phase One aimed to quantify the palliative care needs of Chinese patients with advanced cancer and the needs of their informal caregivers, with the following objectives: (1) to identify the prevalence of unmet palliative care needs of advanced cancer patients; (2) to determine the unique contribution of each hypothesized predictor to the palliative care needs of patients; (3) to identify the prevalence of unmet needs of informal caregivers of patients; (4) to determine the unique contribution of each hypothesized predictor to the needs of informal caregivers; (5) to determine the relationship between the palliative care needs of patients and the needs of their informal caregivers; and (6) to identify the common and prominent unmet needs of both the patients and their informal caregivers. Phase Two aimed to explore more details of the common and prominent unmet needs that were identified in the survey in Phase One, with two additional objectives: (7) to further clarify and elaborate the identified unmet needs of both patients and their informal caregivers; and (8) to further explore the perceptions and experiences of patients and their informal caregivers in relation to the identified unmet needs. Methods: This doctoral research project employed a multimethod research design, namely, a quantitatively driven study followed by a qualitative descriptive study. A cross-sectional study was conducted first as the driven method to quantify the palliative care needs of patients and the needs of their informal caregivers, the predictors of their needs, and the relationship between the needs of patients and the needs of their informal caregivers. The selection of the design and outcome variables of the cross-sectional study was performed based on a conceptual framework of palliative care needs. A total of 419 patients and 419 caregivers (in dyads) from two hospitals in Sichuan completed the questionnaires. For the patients, the dependent variable was palliative care needs, which was measured by the Problems and Needs in Palliative Care questionnaire-short version (PNPC-sv), and the independent variables were demographic and clinical characteristics, anxiety, depression, physical distress, social support, coping strategies, and quality of life, which were measured by the Baseline Data Assessment Form, the Hospital Anxiety and Depression Scale (HADS), the Edmonton Symptom Assessment Scale (ESAS), the Medical Outcomes Study-Social Support Survey (MOS-SSS), the Brief Coping Orientation to Problems Experienced (Brief-COPE) inventory, and the European Organisation for Research and Treatment of Cancer (EORTC) Quality-of-Life Questionnaire Core 15-Palliative Care (QLQ-C15-PAL) scale, respectively. For the informal caregivers, the dependent variable (needs of informal caregivers) was measured by the Comprehensive Needs Assessment Tool for Cancer Caregivers (CNAT-C), and the relevant independent variables, including demographic and clinical characteristics, anxiety, depression, social support, coping strategies, and quality of life, were assessed by the Baseline Data Assessment Form, the HADS, the MOS-SSS, the Brief-COPE, and the Caregiver Quality of Life Index-Cancer (CQOLC), respectively. Semi-structured interviews were subsequently conducted after the completion of the cross-sectional study to further elaborate and explore the perceptions and experiences of the patients and their informal caregivers in relation to their identified unmet needs, which involved 17 patients and 15 informal caregivers. Descriptive analysis was used to describe the characteristics of the needs of patients and their caregivers. Stepwise regression analysis was adopted to identify the influencing factors of the needs of patients and caregivers. Pearson's correlation coefficient was employed to explore the genral linear relationships between the needs of patients and caregivers. Content analysis was used to analyse the qualitative data. Results: The cross-sectional study recruited 428 patient-informal caregiver dyads and 419 dyads (419 patients and 419 caregivers) completed the questionnaires. The top five palliative care needs of the patients were related to financial ('extra expenditures because of the disease', 88.3%; 'loss of income because of the disease', 85.2%), information ('insufficient information', 82.3%), physical ('pain', 69.7%), and psychological ('fear of physical suffering', 64.9%) domains. Regarding the informal caregivers, the commonly reported needs were related to the domains of healthcare staff ('nurses to promptly attend to patient discomfort and pain', 95.0%), information ('information about tests and treatment', 92.1%), and hospital facilities and services ('a designated hospital staff member who would be able to provide counselling for any concerns, and guidance with the course of the treatment, from the point of diagnosis to the period after discharge', 90.5%). Information needs was a common and prominent unmet need of both the patients and their informal caregivers. Significant positive correlations between the palliative care needs of patients and the needs of informal caregivers were identified across a majority of the needs domains. The results of the multiple stepwise regression analysis indicated that the patients' and informal caregivers' care needs were influenced by not only the factors related to themselves but also the factors related to their partners. The physical (symptom distress) and psychological factors (anxiety and depression, coping, and quality of life) were found to be more significant than the demographic and clinical factors in predicting the care needs of patients and informal caregivers. The presence of anxiety and depression, the use of coping strategies (particularly, less use of problem-focused coping), and caregivers' poorer quality of life (QoL) were three common and significant predictors of higher levels of need for both patients and informal caregivers. The patients' symptom distress was identified as another negative factor of their palliative care needs. Seventeen patients and 15 informal caregivers with unmet information needs participated in the follow-up qualitative interviews. Four categories were extracted from the interview data of both the patients and the informal caregivers, which were types of unmet information needs, reasons for information needs being unmet, preferences for the provision of information, and the meaning and role of information. Each category had two to four sub-categories. The sub-categories for the patients and informal caregivers were similar but not totally the same. Conclusion: The findings from the cross-sectional study and the semi-structured interviews contributed to a comprehensive and in-depth understanding of the palliative care needs of patients with advanced cancer and the needs of their informal caregivers within the Chinese context, which will provide evidence to researchers and policymakers in terms of developing tailored palliative care interventions and services. Patients' and informal caregivers' needs cannot be addressed optimally only by increasing the amount of external help and resources; there is also a need for healthcare professionals to incorporate regular and dynamic assessment of the presence and intensity of physical and psychological distress, as well as the use of certain coping strategies, into conventional clinical practice to determine the target group for more specific interventions to address their needs and concerns. Some specific components can be included in intervention programmes to relieve patients' physical and psychological distress and to improve their coping and problem-solving skills. Informal caregivers' well-being should be regarded as important as that of patients. The care needs of patients and informal caregivers can be better fulfilled via family-based healthcare services and interventions. More emphasis should be placed on unmet information needs, and how to develop and provide tailored and appropriate information provision regarding the type and amount of information to patients and their informal caregivers should be considered in clinical practice. |
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| Access: | open access |
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