Palliative care experiences of adult cancer patients from ethnocultural groups: a qualitative systematic review protocol

Abstract

Review question/objective 

The objective of this review is to synthesize the best available evidence on palliative care experiences of adult cancer patients from ethnocultural groups.

More specifically, this systematic review seeks to answer the following questions:

1. What are the palliative care experiences of adult cancer patients from diverse ethnocultural groups?

2. What meanings do adult patients with cancer from diverse ethnocultural groups assign to their experiences with palliative care?

Background 

Globally, over 20.4 million people need palliative care services annually.¹ The majority of these people (19 million) are adults, with 34% of them being patients diagnosed with cancer.¹ With the current increase in the aging population, especially in developed countries, the number of adults requiring palliative care is expected to rise.² Furthermore, how palliative care is offered and received continues to be shaped by culture and ethnicity. Likewise, culture and ethnicity influence how palliative care patients experience diseases like cancer, and seek and utilize palliative care services.³ Also, healthcare providers sometimes find it challenging to address the palliative care needs of patients from different ethnocultural groups.⁴ Sometimes these challenges are believed to be due to cultural incompetence of the care provider.^3,5-8 When palliative care patients and their providers differ in their perception of care needs and how to address them, negative palliative care experiences are likely to ensue.⁴ Therefore, as the demand for palliative care increases, and ethnocultural factors continue to affect palliation, it is important to gain a better understanding of palliative care experiences of patients from different ethnocultural groups.^2,9

The terms culture and ethnicity have been defined and used differently in literature which sometimes lead to confusion.¹⁰ Ethnicity has been defined as distinctive shared origins or social backgrounds and traditions of a group of people that are maintained between generations and bring about a sense of identity that may encompass a common language and religion.¹¹ Ethnicity is fluid and should not be confused with nationality or migration or race. In this review, we define ethnicity in relation to the self-identification of participants in studies that will be included in the review.

Culture refers to patterns of explanatory models, beliefs, values and customs.¹² These patterns may be informed and expressed in things like diet, clothing or rituals, or in the form of language and social or political systems.¹² Culture may be fluid because of developments in people's lives.¹⁰ In light of the aforementioned definitions, and recognizing the inconsistency in how these terms are sometimes used, the authors of this review define ethnocultural patients, as described in papers to be reviewed, as those who belong to an ethnic group by way of involvement, attachment, self-labelling or attitude towards the group, and who share cultural traditions, ancestry, language, nationality or country of origin.^12-14

Palliative care in the context of cancer focuses on the improvement of the quality of life of patients by addressing their physical, emotional and spiritual needs, and by supporting their families.¹⁵ Palliative care is often associated with supportive and hospice care.¹⁵ Supportive care emphasizes meeting patients' needs such as physical, mental, social, psychological, emotional and material needs from the period before diagnosis, during diagnosis, treatment to the follow-up period in the cancer trajectory.¹⁶ Hospice care in the context of cancer aims to relieve patients' pain and suffering, and improve their quality of life. Hospice care includes palliative care services and other services such as case management, respite care and bereavement care. Hospice care focuses on patients with terminal illness (i.e. with expected survival of less than six months) and their families.¹⁵ Moreover, hospice care is facilitated by a multidisciplinary team of physicians, nurses, social workers, chaplains, home health aides and volunteers.¹⁵

Palliative care needs for cancer patients are numerous and may include needs related to activities of daily living, communication¹⁷, sexuality¹⁸, physical needs¹⁹, psychological needs^20,21, fear²², spiritual wellbeing²¹, socioeconomic aspects²³ and insufficiency of information.²⁴ Cancer patients often report of suffering, pain and being in constant need of support.^25-27 In dealing with their suffering, some patients seek internal motivation by looking at the disease as a life challenge.²⁵ Other patients turn to external sources of motivation like religion^25,26, or peer and family support groups.^26,28

Patients from different ethnocultural groups report similar as well as dissimilar palliative care needs and experiences.^17,26,29-39 With respect to similarities, a study from the United States found that African American and Caucasian patients alike valued practical assistance from social groups.^31,32 Participants from both ethnocultural groups valued friends and families that listened to their cancer-related concerns. Similarly, Turkish and Moroccan patients in a study conducted in Netherlands valued friends and family members that were there for them.⁴ Additionally, participants particularly of African American descent treasured positive attitudes from people around them and valued support from religion and faith communities.³¹ These sentiments are echoed in a palliative care study conducted in the United Kingdom.²⁶ In the UK study, Caribbean Blacks and British White patients appreciated the significance of social networks and partner or spousal support in their cancer trajectory.²⁶

In regards to unsupportive palliative care experiences, authors of the United States study report that African Americans and Caucasians had more similarities than differences.³¹ Firstly, both ethnocultural groups shared experiences of losing association with family and close friends after they learnt of the patients' diagnosis. These sentiments were also reported by Danish-born and immigrant patients in a study by Kristiansen and colleagues.³⁴ Secondly, both African American and Caucasian patients felt responsible for the emotional wellbeing of their loved ones.

When it comes to differences in palliative care needs and experiences, Grange and colleagues³¹ report that African American and Caucasian participants valued provision of housing which included daily patient care.³¹ Participants treasured the opportunity to either move or have family members move in and live with them. However, more African American than Caucasian participants had experiences of moving in with a family member. Important differences in unsupportive palliative care were also reported. Although both African Americans and Caucasians lost friends and family members following knowledge of the cancer diagnoses, more African Americans than Caucasians were likely to report losing friendship. Additionally, African Americans experienced diminished independence mainly because of overprotection from family and friends.³¹ Diminishing independence is echoed in the Dutch study involving Turkish and Moroccan patients.⁴ However, in the Dutch study, healthcare providers appeared to advocate for patients' independence which contradicted with the value placed by family members in protecting their loved one.⁴

In another American study, Latina women desired health-related information more often than their Caucasian American counterparts.³³ The need for information by Latina women was irrespective of their socio-demographic factors, including level of education.³³

The aforementioned similarities and differences in palliative care experiences call for further exploration of ethnocultural palliative care patients' experiences. A better understanding of their experiences will create avenues for finding better ways of providing palliative care, preventing psychological distress and improving quality of life and death.^40-42

Understanding ethnocultural issues is important because the unique characteristics of ethnocultural groups often inform approaches to palliative care. Ethnocultural meanings of illness, suffering and dying define the theoretical underpinnings that patients and healthcare providers draw upon in their relations.⁴³ Furthermore, Baker suggests that the provision and receipt of palliative care is more related to culture or ethnicity than to age, education, socioeconomic status or other variables.⁴⁴ Moreover, culture affects communication, decision-making, response to symptoms, treatment choices and emotional expression at the end of life.⁴⁵

Palliative care patients often regard recommendations from healthcare providers as very useful.^46,47 Similarly, healthcare providers may find ethnocultural knowledge beneficial in the provision of palliative care.⁹ When ethnocultural knowledge is lacking, healthcare providers, especially those with minimal training on ethnocultural issues, may provide unsatisfactory palliative care.^8,9,48,49 Similarly, when ethnocultural differences are overlooked or inadequately addressed, inferior care often occurs.⁶ Inferior care which may involve inequality in utilization of and access to palliative care services, pain and symptom management and location of death^5,7, is especially disturbing when adequate palliative care resources exist in some health institutions.⁵⁰

Although qualitative and quantitative research has been conducted in this area, no systematic review compiling findings on ethnocultural patients' experiences of palliative care has been conducted or is underway as per the Joanna Briggs Institute Database of Systematic Reviews and Implementation Reports, Cochrane Database of Systematic Reviews or PROSPERO. The purpose of this systematic review is to summarize findings of qualitative studies that focus on ethnocultural patients' experience of palliative care. Given that cultural incompetence of healthcare providers is one of the factors affecting palliative care experiences of patients from different ethnocultural groups, we anticipate that findings from this review will add to the body of knowledge in this area. Furthermore, nurses and other healthcare providers who are better informed about the perceptions and experiences of palliative care of patients from diverse ethnocultural backgrounds are more likely to be better situated to identify appropriate care needs and provide suitable interventions to these patients.

Definition of terms 

For the purpose of this review, the following definitions will be used:

Palliative care- the interdisciplinary care offered by doctors, nurses and other healthcare providers that focuses on improving a patient's quality of life by addressing their physical, emotional and spiritual needs and on supporting their families.¹⁵ Palliative care as used in this systematic review encompasses supportive care and hospice care.

Ethnocultural groups - as described in papers under review, these are patients who belong to an ethnic group by way of involvement, attachment, self-labelling or attitude towards the group, and who share cultural traditions, ancestry, language, nationality or country of origin.^12-14

Inclusion criteria

Types of participants

This qualitative systematic review will consider studies that include adult cancer patients from ethnocultural groups whose ethnicity differs from that of the main population in the country of care, with inclusion of studies that compare experiences of under-represented groups with main groups in the country of care.

Types of phenomena of interest

The phenomenon of interest is the experience of palliative health care.

Context

The context for this review will be adult patients with a diagnosis of cancer who are receiving palliative care and are from different ethnocultural groups.

Types of studies

This review will consider both interpretive and critical research studies that draw on the experiences of adult patients with cancer, including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research. Published theses and dissertations will also be included. This review will exclude unpublished studies and other texts such as reports, expert opinion papers, narratives and conference proceedings.

Search strategy

The search strategy aims to find primary published studies only. The search will be limited to English articles. English articles will be excluded because researchers are limited in translation resources. Search dates will include articles published from January 1960 to the present. Researchers are of the opinion that papers published since palliative care was introduced in modern medicine by Cicely Saunders in the 1960s will provide the most comprehensive information on the review topic.⁵¹ A three-step search strategy will be used. In the initial stage, a limited search of MEDLINE and CINAHL will be undertaken, followed by an analysis of the text words contained in the title and abstract and index terms used to describe the article. A second search using identified key words and index terms will be conducted across all included databases. In the third step, the reference lists of all articles will be searched for additional articles relevant to this systematic review.

Databases to be searched:

Table: no caption available.

Initial key words to be used include: Medical Subject Heading (MESH) terms: neoplasm, palliative care.

Other words: experiences, terminal care, terminally ill, hospice care, end of life care, dying, continuous care, supportive care, social support, counseling, population groups, cultural diversity, continental population groups, culture, intercultural, cross cultural, transcultural, ethnic, migrant, minorit* ethnic groups. Qualitative research, ethnography, phenomenology, anthropology, interview, focus group,

MeSH terms will be used for databases that use MeSH terms such as CINAHL, Medline, Web of Science, Embase and PsycINFO. For databases that don't use MeSH terms, like Scopus a collection of terms used in databases that use MeSH terms will be used. During the literature search, consideration will be given to differences in terminology used.

All studies identified in the literature search will be assessed for relevance to the review based on the information provided in the title and abstract by the primary reviewer and secondary reviewer. Papers that meet inclusion criteria will be retrieved.

Assessment of methodological quality

The qualitative papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements that arise will be resolved through discussion. Records containing the title, author, source, location and database sources of all articles will be maintained.

Data collection

Qualitative data will be extracted from papers included in the review using standardized data extraction tools from JBI-QARI (Appendix II). Extracted data will include specific details about the populations, phenomena of interest, study methods and outcomes that are significant to the review question and objective.

Data synthesis

Qualitative research findings will be pooled using JBI-QARI. This pooling will involve aggregation or synthesis of findings to generate statements that reflect the aggregation through combining findings rated as per their quality and categorizing these findings depending on similarity in their meaning. These categories will then be subjected to meta-synthesis to come up with a comprehensive set of synthesized findings. Where textual pooling is not possible, findings will be presented in a narrative form.

Conflicts of interest

There are no conflicts of interest.

Acknowledgements

Mr Busolo is supported by a Canadian Institutes of Health Research (CIHR) training fellowship under Dr Roberta Woodgate, Graduate Enhancement of Tri-Council Stipends (GETS), Sheu, L Lee Family Scholarship in Oncology Research and Murphy Scholarship in Graduate Research in Oncology Nursing.

Dr Roberta Woodgate is supported by a Canadian Institutes of Health Research Applied Chair Award in Reproductive, Child and Youth Health Services and Policy Research.