Introduction
Palliative care is "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual".1(para.1) People can access palliative care services through either specialist palliative care or a palliative approach. Specialist palliative care is provided in hospices, hospitals, specialist palliative care units or the homes of those who have complicated palliative care needs, whereas a palliative care approach is provided to any sick person, regardless of their illness, in settings such as residential aged care facilities.2 Historically, palliative care has focused on terminal illnesses such as cancer; however, there is an increasing emphasis on the provision of palliative care to include those with non-malignant conditions. Consequently, most people will encounter palliative care at some time in their lives, whether it be as a patient, carer, family member or friend.
Palliative care requires a multidisciplinary approach to improve the quality of life through reducing the physical and emotional distress associated with dying, and supporting the dying and their family, carers and friends.3 The service delivery is influenced by multiple factors, including cultural variations related to populations from international immigration. Studies indicate that due to decreased health literacy, language barriers, difficulty in accessing health systems, lack of financial support and social resources, along with varying modes of family-based decision making and filial responsibility, international immigrants encounter many cultural and logistical challenges in accessing palliative care, receiving support and services, and in their experiences of palliative care.4-9
In recent years, the recognition of the inequalities in the utilization of, and access to, health care in pluralistic societies has led to the development of culturally appropriate care that emphasizes the importance of cultural relevance and cultural safety.10-12 The challenges presented in providing culturally appropriate palliative care have been increasing as international immigration rates are growing at a rapid rate. According to the International Migration Report,13 the worldwide immigration rate has nearly doubled in the past 17 years, from 173 million in 2000 to 258 million in 2017. Nearly 41% (40.7 million) of the immigrant population is originally from Asia, with China having the fourth largest number of people living outside the country's borders, increasing from 5.8 million in 2000 to 10 million in 2017. The top four selected immigrant destinations are the United States, Canada, England and Australia.14 The Australian Bureau of Statistics in the 2016 census reported that China was one of the most common countries of birth for new arrivals, with 8% of Australian residents born in China, making up 2.2% of the total Australian population.15
Equitable access to high-quality health care is a human right, including for international immigrants.16 In Australia, for instance, all permanent residents are entitled to receive healthcare benefits via the Medicare system, inclusive of free access to public hospital health care, subsidized prescriptions and medical services.17 This access and the high standard of healthcare provision have been found to be one of the main driving factors influencing Chinese people to migrate to countries such as Australia.14 However, despite having left their country of birth, Chinese immigrants' expectations concerning their health and health care are likely to remain heavily influenced by the culturally specific ideas, values and beliefs related to their concept of health and illness, including those related to dying and death.4,8,18-19
The philosophies and religions underpinning Chinese culture, and the associated values and responsibilities related to filial piety, have given rise to particular beliefs and practices surrounding death and dying. These beliefs and traditions differ significantly from those in Western cultures and continue to be held, valued and practiced by Chinese people even when they have migrated from China to a different country.20 For example, although death is acknowledged as part of the normal life cycle, the Chinese still consider it a taboo subject, and "Chinese families will not discuss issues of death and dying for fear of invoking bad luck",20(p.154) resulting in a reluctance to broach the subject of death with the dying. This view on death and dying, combined with a belief that cancer is associated with supernatural explanations such as karma, supernatural retribution, feng shui, fate and misfortune, have significant implications for palliative care service provision for Chinese immigrants.4 These challenges are compounded with the fact that hospice and palliative care, translated into Chinese, means care for the dying, which in turn is perceived in Chinese culture as giving up on the patient, a concept that is unacceptable in Chinese traditions, particularly those related to filial piety.
The traditional Chinese view on death and dying, such as "While you do not know life, how can you know about death
?",21(p.83) can lead to insufficient communication between the dying, their family members and healthcare providers. This reticence often results in a lack of knowledge in Chinese people, which is, in turn, associated with reluctance, firstly, by family members to allow the patient to access palliative care services and, secondly, by clinicians to discuss death and dying with patients and their families.20,22-24 Unlike Western culture, which emphasizes individualism, Chinese culture is family-oriented; therefore, family plays a more important role than the individual in decision making. For example, when a Chinese person is diagnosed with a terminal illness, clinicians are more likely to provide this information to family members, mainly the male members of the family, who would then decide whether to tell the patient about the terminal diagnosis and how much information should be given.4,25 Consequently, palliative patients adhering to Chinese traditions are often prevented from being informed about their condition or prognosis, even when they are at the end stage of their life.
Over past decades, research in palliative care has undergone substantial growth, as seen in the increase in evidence-based practice and principles, new care delivery models, innovative payment methods, and increasing public and professional awareness and understanding.26 Despite these advances, how best to provide palliative care for non-dominant ethnic cultural groups, such as Chinese immigrants, remains unclear and problematized,27 especially when service delivery may be either viewed suspiciously or rejected as a result of cultural beliefs and traditions on death and dying. Therefore, we propose to conduct a systematic review to identify and synthesize the best available qualitative evidence on the experiences of Chinese immigrants receiving palliative care within hospitals, facilities, communities or specialist palliative care units to determine the impact of their cultural beliefs on their acceptance and decision making related to palliative care services. Family carers' experiences will also be explored.
This review has the potential to provide valuable insights regarding the realities and challenges of providing palliative care in the Chinese cultural context. It aims to inform policymakers, researchers and healthcare and education providers so they may work collaboratively to develop culturally appropriate palliative care education and training to support health professions in the delivery of palliative care in a way that is cognizant of the individual and his or her particular culture. A preliminary search in JBI Database of Systematic Reviews and Implementation Reports, Cochrane Library, CINAHL, PROSPERO and PubMed identified no current or planned qualitative systematic reviews on this topic.
Review objectives
This review aims to identify and synthesize the best available qualitative evidence on the experiences of Chinese immigrants receiving palliative care in their country of residence where the culture is predominantly Western, and the experiences of their family carers. The review objectives are:
* To explore the experiences and perceptions of Chinese immigrants who have received palliative care within hospitals, facilities, communities or specialist palliative care units, and the experiences of their family carers.
* To uncover the impact of Chinese cultural beliefs on palliative care decision making and the experience of palliative care provided.
* To inform recommendations to health policy makers, educators, researchers and health professionals on palliative care provision for people of a Chinese background.
Inclusion criteria
Participants
The review will consider studies that include Chinese-born residents over 18 years of age with a terminal condition who have settled in a foreign country as a migrant and have received or are receiving palliative care in their current country of residence where the culture is predominately Western. A terminal condition, defined by the International Association for Hospice and Palliative Care, is "a progressive condition that has no cure and that can be reasonably expected to cause the death of a person within a foreseeable future. The definition is inclusive of both malignant and non-malignant illness and ageing."28(para.1) Trauma patients and those born outside China are excluded from this review. The duration of palliative care service is not a requirement for inclusion. The experiences and perceptions of the Chinese immigrants' family carers regarding using palliative care, including parents, adult children, spouses and other family members who provide care to them at home, will also be included in this review.
Phenomena of Interest
This qualitative review will investigate the experiences and perceptions of Chinese immigrants with palliative care services, either as a patient or family carer. Aspects of this phenomena to be explored include attitudes towards and readiness for palliative care, cultural influences on decision making related to their acceptance of palliative care services, and the ability of these services to ensure cultural safety for both patients and their family carers.
Context
This review will consider studies that have been conducted among Chinese immigrants with a terminal medical condition receiving palliative care, terminal care or end of life care in outpatient clinics and facilities, hospitals, hospices, specialist palliative care units, homes and community settings in their country of residence where the culture is predominantly Western.
Types of studies
This review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, narrative research, qualitative description, action research and feminist research. Mixed methods studies will be considered for inclusion only when qualitative data can be extracted separately.
Methods
Search strategy
The search strategy aims to locate both published and unpublished studies, and a three-pronged approach will be employed to conduct a comprehensive search. An initial limited search of MEDLINE and CINAHL has been undertaken, followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe the article. Once the keywords and index terms are defined, a second search using all identified keywords and index terms will be undertaken across all selected databases. Thirdly, the reference lists of all studies selected for critical appraisal will be screened for additional studies. To coincide with the worldwide progression of palliative care and pain relief for patients with cancer,29 studies published from 1982 to the present in English and Chinese will be considered for inclusion in this review. The search strategy for MEDLINE is detailed in Appendix I.
Information sources
The databases to be searched include CINAHL, PsycINFO, MEDLINE, Scopus and Web of Science Core Collection. The search for unpublished studies (gray literature) will include ProQuest Dissertations and Theses, OpenGrey and Caresearch.
Study selection
All identified citations will be collated and uploaded into EndNote X7.5 (Clarivate Analytics, PA, USA), and duplicates removed. Titles and abstracts will be independently screened by two reviewers for assessment against the inclusion criteria for the review. Studies that meet or could potentially meet the inclusion criteria will be retrieved in full, and their details imported into the JBI System for the Unified Management, Assessment and Review of Information (JBI SUMARI; Joanna Briggs Institute, Adelaide, Australia). These full texts of selected studies will be retrieved and assessed in detail against the inclusion criteria. The results of the search will be reported in full in the final report and presented in a Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram.30 Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer.
Assessment of methodological quality
Selected studies for retrieval will be critically appraised by two independent reviewers for methodological quality in the review using the standardized JBI Critical Appraisal Checklist for Qualitative Research.31 Any disagreements that arise between the reviewers will be resolved through discussion or consultation with a third reviewer. The results of critical appraisal will be reported both in narrative form and in a table. Following critical appraisal, studies that do not meet the inclusion criteria will be excluded, and the reasons for exclusion will be explained in an appendix in the final systematic review report. All studies, regardless of methodological quality, will undergo date extraction and synthesis.
Data extraction
Qualitative data will be extracted from papers included in the review using the standardized data extraction tool from JBI SUMARI31 by two independent reviewers. The data extracted will include specific details about the populations, context, culture, geographical location, methodology, methods and phenomena of interest relevant to the review question and specific objectives. Other observations about each study relevant to this review (e.g. study limitations, strengths) will also be noted. Findings and their illustrations will be extracted and assigned a level of credibility. The primary authors of papers will be contacted for clarification or any missing information, where necessary.
Data synthesis
Qualitative research findings will, where possible be pooled using JBI SUMARI with a meta-aggregation.32 This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings and categorizing these findings on the basis of similarity in meaning. These categories will then be subjected to a synthesis to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in narrative form.
Assessing confidence in the findings
The final synthesized findings will be graded according to the ConQual approach for establishing confidence in the output of qualitative research synthesis and presented in a Summary of Findings.33 The Summary of Findings will include the major elements of the review and detail how the ConQual score is developed. Included in the table will be the title, population, phenomena of interest and context of the specific review. Each synthesized finding from the review will be presented along with the type of research informing it, a score for dependability and credibility and the overall ConQual score.
Acknowledgments
Dr Sally Wilson, Director of The Western Australian Group of Evidence Informed Healthcare Practice for her valuable, constructive feedback on the review protocol. Bryan Chan, librarian at Murdoch University, for his support with database selection and search.
Appendix I: Search strategy for MEDLINE via Web of Science
References