Influence of religion and spirituality on head and neck cancer patients and their caregivers: a protocol for a scoping review

Abstract

Introduction

Head and neck cancers (HNC) are devastating, thus imposing a negative impact on the appearance of an individual as well as vital activities such as eating, swallowing, speaking, and breathing. Therefore, HNC patients undergo distress, while their caregivers become overburdened. Religion and spirituality can be helpful for patients and their caregivers from diverse cultural backgrounds to cope with cancer. Though well established in palliative care, religion and spirituality are rarely incorporated into usual early oncological care. Despite the availability of heterogeneous literature examining the influence of religion and spirituality on cancer patients, there is notably limited research on this topic across the HNC trajectory. Therefore, this scoping review attempts to answer “What is the influence of religion or spirituality on HNC patients and their caregivers in different contexts?” and will map the evidence on the influence of religion and spirituality on HNC patients and their caregivers in different contexts including geographical areas, cultures, health care systems, and different study settings.

Methods

This scoping review was formulated using the guidelines of Joanna Briggs Institute (JBI) manual for evidence synthesis: scoping reviews and will be reported confirming to the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR checklist). A comprehensive search strategy will include Embase, CINAHL, Scopus, and APA PsycINFO. The OPENGREU.EU and Google Scholar will be used as gray literature sources complimented by manual searches. Our eligibility criteria follow the population, concept, and context (PCC) framework. Patients aged ≥ 18 years diagnosed with HNC and their informal, nonpaid caregivers aged > 18 years will be included. The data will be extracted using piloted data extraction form on sociodemographic, disease-related, and treatment-related factors and outcomes, and the data will be analyzed through descriptive statistics and thematic analysis. The results will be narratively synthesized.

Conclusions/discussion

This review will aim to explore existing literature and summarize the findings of studies that examine the influence of religion and spirituality among HNC patients and their caregivers and vice versa over a range of physical, psychological, and social outcomes including quality of life. We also aim to identify existing research gaps. The findings of this review would generate evidence to better inform health care providers in countries and cultures in the management of patients diagnosed with HNC in usual oncological care with due consideration to caregivers.

Introduction

Head and neck cancers (HNC) denotes a global public health challenge, ranking as the seventh most common cancer worldwide accounting for over 660,000 new cases and 325,000 fatalities annually [1]. Increasing incidence of HNC is attributed to rising prevalence of human papillomavirus infection and the consumption of smoked and smokeless tobacco, alcohol, and areca nut [2]. These cancers contribute to psychological distress and impaired quality of life as they involve organ systems fundamental to appearance and vital functions of daily living such as eating, swallowing, speaking, breathing, and appearance [3, 4]. Therefore, in addition to disfigurement and disruption of daily activities, the diagnosis, treatment, and sequelae of HNC are sources of distress, stigma, and anxieties [3,4,5]. Therefore, the sociability of not only HNC patients but also their caregivers as well could get affected [6,7,8]. Improvements in treatment modalities and outcomes have resulted in increasing survivorship of HNC patients, and this has created unique physical, functional, and psychosocial needs for HNC survivors when compared to survivors of other cancers [9,10,11]. The physical and functional needs of HNC patients include pain management, ensuring nutrition due to dysphagia, wound care, oral care, speech, and communication, while psychosocial needs comprise management of psychological distress, fear of recurrence, uncertainties, information needs, addressing body image and self-esteem concerns, emotional support, and empowerment [9,10,11]. Thus, the tasks of caregiving in these patients can be challenging and demanding for the caregivers, adding to a high caregiver burden. The influence of HNC are not limited to the victim alone, but its influence can affect the lives of caregivers’ physically, psychosocially, and financially [10,11,12,13]. Caregivers face a range of challenges throughout the caregiving journey, which typically evolves through several phases. Initially, they may struggle with adapting to the role, feeling overwhelmed by the sudden responsibilities. As caregiving progresses, emotional and physical burdens arise, such as managing stress, coping with the patient’s deteriorating health, and balancing personal life. In the later stages, caregivers may experience fatigue, financial strain, and feelings of isolation while also grappling with anticipatory grief and the emotional toll of end-of-life care. Each phase brings unique stressors, highlighting the need for targeted support systems [14]. Therefore, studies have highlighted the critical need for HNC-specific supportive care interventions for survivors as well as their caregivers [15,16,17].

Religion and spiritual beliefs can be very important to patients and their caregivers, regardless of their cultural backgrounds, religious traditions, and faiths [18]. Religion denotes a multidimensional, composite social construct that embraces a set of spiritual beliefs and practices manifesting at an individual level but also encompasses the institutional level through congregations which share specific beliefs, value systems, traditions, and sociocultural contexts [18]. Spiritual care is well established in the palliative care of late/advanced stage cancer patients; however, it is rarely incorporated into usual oncological care at the time of diagnosis and treatment stages with curative intent [19,20,21,22]. Adherence to structured religious rites, beliefs, and practices within a particular faith tradition can be referred to as religiosity. It frequently entails taking part in group worship and abiding by moral standards or established principles [23, 24]. Spirituality is a more expansive idea that centers on individual feelings of connection, meaning, and purpose that may or may not be connected to formal religion. Spirituality, which reflects individual views and ideals outside of official religious systems, frequently places an emphasis on personal investigation of the transcendent or sacred [23, 24]. In reality, defining both religion/religiosity and spirituality and pointing out differences between them deemed notoriously difficult [25]. Spirituality is closely connected to religion but collusively not being contained with it. Moreover, religion is liable to criticism for its archaic teachings that are patriarchal and dogmatic; imposing rules from above; being hierarchical; placing its authority in priests, bishops, and clergy; and being generally institutional, making it narrow, rigid, prescriptive, and less attractive. Separating the sacred from the profane deemed another limitation of religion, thus fostering dichotomous agenda of polarity. On the contrary, spirituality is praised for seeking the unity of the sacred, human, and the nature which largely embraces the politics, the environment, and sociocultural milieu, thus incorporating a holistic agenda.

There is voluminous research on the influence of religion and spirituality (R/S) in cancer patients, cancer care, and cancer service utilization [23,24,25,26,27,28,29,30,31,32], consequent to surge of interest in the sociocultural contributors of health and disease combined with the awareness on the importance of R/S to patients [33]. Thus, a large volume of heterogeneous literature examining the relationship between R/S and patient-reported outcomes measures (PROM) emerged in cancer research. Three meta-analyses were conducted to identify the associations between R/S and PROM pertaining to physical, mental, and social domains [19, 27, 28, 33]. Those meta-analyses further explored and compared the strength of associations of those outcomes with dimensions of R/S broadly categorized as “cognitive,” “affective,” “behavioral,” and “other.” The cognitive dimension comprised specific R/S beliefs and perceptions, beliefs of fatalism, spiritual growth, causal attributions, attitudes of God is responsible for one’s health, a perceived importance of spirituality, images of God, etc. The behavioral dimension consists of religious practices, private/public, meditation, mindfulness, and prayers, while affective dimension encompasses spiritual wellbeing, spiritual distress, spiritual coping, and spiritual uncertainties. R/S attributes that could not be categorized into other three categories were included as “other” which mostly comprised composite indicators of R/S [19, 27, 28, 33]. Despite the need for further research, the results generated from 1341 effects drawn from 44,000 cancer patients confirmed R/S was significantly but modestly associated with physical, mental, and social health outcomes of cancer patients. However, some dimensions of R/S were linked with more favorable outcomes while others with poorer outcomes [33]. For example, affective dimension demonstrated the largest effect size among all R/S dimensions but still modest with all health domains. In contrast, behavior dimension showed a small association only with social health domain but not with any other PROM domains [33]. Hence, the association between R/S and outcomes of cancer patients becomes complex and variable with many unresolved issues.

However, more favorable outcomes are reported by recent work on R/S and health outcomes of cancer patients across cancer trajectory. Thus, a recent systematic review on prostate cancer and spirituality revealed a remarkably positive relationship spanning to multiple positive outcomes such as reduced stress and uncertainty, less regret in the choice of treatment, functional and psychosocial well-being, empowerment of active patient participation in the treatment, and general coping with the disease [34]. Supporting this notion, a recent empirical study was conducted among a group of thyroid cancer patients found over 90% of patients perceiving that religion was crucial in their lives, with a need for praying/meditation. The patients also believed that religion offered a strong support in coping with the condition [35]. In addition, the participants in the study were interested in recovering their inner spiritual health and to strengthen the relationship with their families [35]. Therefore, cancer patients may perceive a need for spiritual health to enhance their cop up skills with family support. Other studies have also explored the influence of religiosity and spirituality on caregivers of patients with advanced cancers [35, 36]. However, clear understanding is still lacking on how patients seek to have religion and spirituality integrated into their patient-centered cancer experiences; this is confounded by marked variation in methodological approaches to studying those complex constructs [33, 37, 38].

Pertinently, there is limited research on this topic across the HNC trajectory. The limited evidence suggested positive outcomes such as better quality of life, post-traumatic growth, and less psychological distress among head and neck cancer associated with religion, religiosity, and spirituality [39,40,41,42,43,44]. However, a recent qualitative exploration assessed how certain religious beliefs, spiritual practices, and fatalism may act as barriers for timely diagnosis of oral cancers [45]. Our preliminary literature search using PubMed and Cochrane databases did not yield any scoping review, systematic review, or even a narrative review on influence of R/S on HNC cancer trajectory. Against this backdrop, it is not clear how R/S influence HNC patients and their carers across the HNC trajectory given the complexities and reciprocity involved. Hence, it is timely to assess the size and scope of the available literature, thus mapping key concepts, types of evidence, and gaps in research in this regard, through a scoping review [46]. The findings of this scoping review would generate evidence to better inform clinicians in countries and cultures in the management of patients diagnosed with HNC in routine clinical care with consideration to caregivers.

The primary aim of this paper is to document the protocol of a proposed scoping review which seeks to identify the dimensions in R/S used in HNC research and map the influence of R/S on HNC patients and their caregivers and the research gaps existing in this domain.

Methods

Title and protocol registration

The title and protocol of this proposed scoping review have been registered in the Open Science Framework registry (https://doiorg.publicaciones.saludcastillayleon.es/https://doiorg.publicaciones.saludcastillayleon.es/10.17605/OSF.IO/6F4EU).

Methodological framework

This scoping review protocol was developed based on the Joanna Briggs Institute (JBI) manual for evidence synthesis [47], which provides comprehensive guidance for developing scoping reviews, and it was underpinned by Arksey and O’Malley’s [48] methodological framework for conducting a scoping review. Additionally, the guidelines of the Preferred Reporting Items for Systematic reviews and Meta-Analyses-Protocol (PRISMA-P) checklist were used for the reportage of this protocol [49].

Stage 1: Identifying the review question

The primary research question for the proposed review is “What is the influence of religion or spirituality on HNC patients and their caregivers in different contexts?” Further, the primary research question was further divided into these specific sub-questions, based on the specific objectives of the proposed review:

• 1. What are the dimensions of religion and spirituality used in HNC research?

• 2. What is the influence of religion or spirituality on HNC patients and their caregivers on a range of physical, psychological, and social health outcomes including quality of life, health-seeking behaviors, treatment outcomes, treatment compliance, and survival?

• 3. What is the influence of cancer diagnosis and cancer trajectory experiences on religion and spirituality of HNC patients and their caregivers?

• 4. What are the existing research gaps in the area of HNC and religion or spirituality?

Stage 2: Identifying the relevant studies (search strategy)

A comprehensive search will be conducted without a time restriction to identify relevant literature in the following electronic research databases: Embase, MEDLINE, CINAHL, and APA PsycINFO. Reference lists of included articles will also be examined to identify any additional literature. Google Scholar (databases of gray literature) will be manually searched to complement the search strategy. Corresponding authors of the selected literature will be contacted if further information is required. The search strategy will be rerun 4 weeks prior to submission of the manuscript for publication to capture the latest literature.

The literature search strategy will be developed through an iterative process by a multidisciplinary team including a librarian and health knowledge services expert, a consultant oral and maxillofacial surgeon, an academic in pediatric dentistry, a consultant in community dentistry, and two public health specialists with experience in conducting systematic reviews. The review questions will be disaggregated into key concepts to facilitate comprehensive and robust search strategies. In addition to Medical Subject Headings (MeSH) terms, appropriate keywords will be identified through commonly used phrases stated in related literature to capture constructs of religion, religiosity, and spirituality among HNC patients. First, the search strategy will be developed for PubMed search, and then the same strategy will be applied with relevant modifications to the other databases. Our initial search strategy is as follows:

• Head OR Neck OR “Nasal Cavity” OR “Paranasal Sinus*” OR “Skull Base” OR Nasopharyn* OR Salivary OR Craniopharyn* OR Neuroendocrine OR Hypopharyn* OR Laryn* OR Trachea* OR Parapharyn* OR Oral OR Tongue OR Oropharyn* OR Odontogenic OR Extramedullary.

• AND

• Cancer* OR Malignan* OR Tumour OR Tumor OR Lesion OR Neoplas* OR Neuroblastoma OR Meningioma OR Chondrosarcoma.

• AND

• Religio* OR Spirit* OR Faith OR Multifaith OR “Mind–body” OR Meditation OR Mindfulness OR "Spiritual coping" OR "Religious coping" OR Pray OR Pastor* OR Belief OR Believe* OR Heal* OR yoga OR meditat*

Search strategy used for each database with the results will be presented as a supplemental material.

Stage 3: Study selection

Eligibility criteria

This proposed scoping review will follow the population, concept, and context (PCC) framework to define eligibility criteria, as recommended by the Joanna Briggs Institute (JBI), to facilitate a more focused literature search [47].

The population will include adults 18 years or older with a histologically confirmed diagnosis of HNC which could be primary, recurrent, or metastatic deriving from paranasal air sinuses, nasal cavity, oral cavity, salivary glands, pharynx, or larynx. Patients with brain, esophageal, thyroid, and parathyroid cancers will be excluded as they are not considered to be typical HNC cancers [50]. Furthermore, formal and informal adult caregivers (18 years or older) of HNC patients will be included. The core concept refers to the influence of religion and spirituality on HNC patients and their caregivers. The subconcepts will include the relationships of cognitive, affective, behavioral, and other dimensions of religion and spirituality (as described in the introduction section of this paper) on self-reported and objectively assessed physical, mental, and social health outcomes and related constructs including quality of life. The context for this proposed review will include all countries and study settings such as primary care, secondary care, tertiary care, hospices, home-based care, and community settings (Table 1).

Table 1 PCC framework for developing the review’s eligibility criteria

In addition to the use of the PCC framework, study design, language of publication, and publication type will also inform the review’s eligibility criteria. Only those qualitative studies (ethnographic studies, phenomenological studies, etc.), quantitative studies (clinical trials (randomized and non-randomized), cross-sectional studies, case–control studies, and cohort/longitudinal studies), mixed-methods studies published in English and as a peer-reviewed journal article or thesis or book chapter or full-length conference paper will be included in the proposed review.

Defining religion, religiosity, and spirituality

Below are the definitions of religion, religiosity, and spirituality in this proposed scoping review.

Religion is a multidimensional construct that includes beliefs, behaviors, rituals, and ceremonies that may be held or practiced in private or public settings but are in some way derived from established traditions that developed over time within a community. Religion is also an organized system of beliefs, practices, and symbols designed to facilitate closeness to the transcendent and to foster an understanding of one’s relationship and responsibility in coexisting with others [23, 24].

Spirituality is defined as set of all emotions and convictions of a nonmaterial nature with the assumption that there is more to living than can be perceived or fully understood, referring to questions such as the meaning of life, not limited to any type-specific religious belief or practice. Spirituality includes both a search for the transcendent and the discovery of the transcendent and so involves traveling along the path that leads from non-consideration to questioning to either staunch nonbelief or belief, and if belief, then ultimately to devotion, and, finally, surrender. Thus, our definition of spirituality is very similar to religion, and there is clear overlap [23, 24].

Literature selection process

Identified records will be uploaded into the Rayyan web tool for record management [51], and the duplicates will be removed. Titles and abstracts will be screened based on the inclusion and exclusion criteria by two independent reviewers. Disagreements in literature selection decisions will be resolved by a third reviewer. The same procedure will be carried out with the full-text level screening. The record review and selection process will be illustrated using a PRISMA flow diagram [49].

Critical appraisal

Included studies will be critically appraised using the Joanna Briggs Institute critical appraisal tools [52]. Two reviewers will independently undertake the appraisal and comment on each criterion. Disagreements will be resolved by discussion between reviewers, failing which by consulting a third member of the review team for arbitration. This is not to exclude studies but to provide context to the analysis. The level of credibility of the included studies will be presented in a table.

Stage 4: Charting the data

Data will be extracted and entered into a bespoke data extraction sheet developed by the review team. Data items of interest were structured based on the review’s eligibility criteria and the objectives of the study. From each selected literature, the following information will be extracted: author names, year of publication, title of literature, study location, objectives of the study, study design, study setting, study period, study population, sample size and sampling technique, data collection method including measurement of religion/religiosity or spirituality, reported influence of religion/religiosity or spirituality on construct being measured, and limitations. To ensure quality of the data extraction process, data from the first five documents will be extracted as a training stage by all reviewers independently, and the results will be compared. The data of the remaining selected literature will be extracted by two independent reviewers. These two sheets will be compared, and any inconsistencies will be discussed and adjudicated by a third reviewer if required. In case further information or clarification is needed concerning the extracted data, the corresponding authors will be contacted (Supplementary files 1 & 2).

Stage 5: Collating, summarizing, and reporting of results

The data charted in this scoping review will be collated and summarized in themes and presented as texts, charts, and tables, using a narrative synthesis approach. Findings of each included study will be presented with key characteristics such as first author, year of publication, geographical location, study design, sample size, and sampling method (Table 2). Results will be reported according to the review questions. To answer the first question (What are the dimensions of religion and spirituality used in HNC research?), results will be presented as a narrative review with regard to affective, behavioral, cognitive, and other such as multidimensional psychometric scales. Further details will be provided under “Measurements” of Table 3.

Table 2 Study characteristics

Table 3 Measurements used, reported influence on HNC, and limitations of studies

Answers to the second (What is the influence of religion or spirituality on HNC patients and their caregivers on a range of physical, psychological, and social health outcomes including quality of life, health-seeking behaviors, treatment outcomes, treatment compliance, and survival?) and the third (What is the influence of cancer diagnosis and cancer trajectory experiences on religion and spirituality of HNC patients and their caregivers?) questions will be described as a narration. Additionally, this information will be presented in Table 3 under “Findings.”

Identification of the existing research gaps and limitations in the relationship between religion/spirituality (R/S) and HNC is essential to address the fourth sub-question of this review: What are the existing research gaps in the area of HNC and religion or spirituality? Given the limited yet evolving research arena on the influence of R/S on HNC trajectory, it is important to make a note of existing limitations and research gaps to influence future research work with better translational value. This will encompass mining into study designs, the complex reciprocal relationship between R/S and HNC trajectory, the internal and external validity of study findings, and controlling for confounding factors such as socioeconomic status, disease-related factors, and treatment-related factors. For example, cross-sectional study designs reflect a snapshot of a single time point instead of a sequence of events (whether R/S variables or changes in R/S variables predict health outcomes across the cancer trajectory), thus necessitating longitudinal follow-up studies for more conclusive evidence. By taking stock of existing research, gaps in the perceived influence of patients and caregivers on integrating R/S into usual HNC care will be identified.

The potential limitations of evidence synthesis method of this scoping review will also be discussed.

Expected outcomes

The influence of religion, religiosity, or spirituality on the following domains of the patients diagnosed with HNC and their caregivers will be described in the proposed scoping review:

• 1. Quality of life

• 2. Survival

• 3. Physical well-being

• 4. Psychological well-being

• 5. Social well-being

• 6. Posttraumatic growth

• 7. Adjustment

• 8. Appearance concerns

• 9. Cancer diagnosis

• 10. Fatalism

• 11. Treatment compliance

• 12. Demoralization

• 13. Depression

• 14. Anxiety

• 15. Suicidal ideation

• 16. Sleep disorders

• 17. Fatigue

• 18. Timely access of health care services

• 19. Any other outcome not mentioned before

Discussion

The primary research question and aim of this scoping review are to explore and expound the multifaceted influence of religion and spirituality among HNC patients and their caregivers in different contexts, across an array of outcomes ranging from quality of life to health care-seeking behavior. Further, we shall be dissecting this influence along cancer trajectory from diagnosis to palliative care with the special emphasis to usual HNC oncological care. Reciprocally, we aim to explore the influence of cancer diagnosis and cancer trajectory on religion and spirituality of HNC patients and their caregivers. We shall be attempting to identify and compare the influence of dimensions of religion and spirituality, i.e., cognitive, affective, behavioral, and other on domains of health and other outcomes in HNC trajectory. Given the aerodigestive anatomic involvement of the tumor as well as its treatment affecting the appearance and vital activities of daily living such as eating, speaking, breathing, and swallowing, inevitably, HNC patients need to cope up with the devastation, discomfort, and distress, while their carers need to grapple with challenging task of caregiving. Hence, there is an emerging need to explore the potential of religion, and religiosity and spirituality could offer to relieve the suffering of HNC patients and their overburdened caregivers. Due to the meticulously crafted eligibility criteria and the wide range of terms proposed for the search strategy, this scoping review would generate a wealth of evidence unravelling not only the complexities in conceptualizing, defining, and measuring the composite constructs of religion, religiosity, and spirituality but also their complex influence on HNC patients and their caregivers highly confounded by countries, cultures, and health care systems. We shall identify existing knowledge and research gaps and challenges in the milieu of influence of religion, religiosity, and spirituality on HNC patients and their caregivers. Our findings will shed light into better approaches in integrating religious and spiritual care to patient-centered cancer care experience of HNC patients and their caregivers.

Implications for research and practice

The findings of this review will have important implications for both research and practice. New research should focus on addressing the gaps identified in this review. Recommendations for practice changes at various levels of service delivery related to R/S domains will be provided based on key findings in the review. HNC patients and their caregivers undergo unique challenges and elevated psychosocial supportive care needs throughout cancer trajectory as the disease and its treatment negatively impact on vital functions of the daily life of patients such as eating, swallowing, breathing, and speech. Those needs often become unmet and navigating religion and spirituality to enhance psychosocial and mental well-being of HNC patients and their caregivers and their coping strategies. Given the poor prognosis of many types of HNC and the perception of deadly nature of cancer, patients and their caregivers often experience spiritual needs upon receiving cancer diagnosis. Findings of this scoping review will provide novel insights on incorporating religion and spirituality to comprehensive cancer care for HNC patients and their caregivers by fostering supportive environments for patient-centered care across countries, cultures, and health systems.

Strengths and limitations

This is the first scoping review synthesizing evidence on the influence of religion and spirituality on HNC patients and their caregivers. Comprehensive search strategy developed through an iterative process involving experts from relevant fields will enable us to provide a broad overview of the subject.

Despite already published scientific literature on the influence of religion and spirituality on head and neck cancer patients and caregivers which are often positive, yet negative or inconclusive at times, to this date, there is no scoping review that critically synthesizes the evidence that aims to map key concepts in the complex multidimensional constructs of religion and spirituality as well as an array of outcomes that are physical, psychological/emotional, social, and perceived quality of life, the type of evidences and gaps in published research in this broad research arena with many unresolved issues. Given the unique challenges that arise in the holistic management of head and neck cancer patients compared with patients with other cancer types, attributed to the negative impact on vital functions of daily living such as eating, breathing, swallowing, and speaking as well as appearance and self-identity caused by the disease and its treatment, religion and spirituality have garnered recognition as novel approaches in managing head and neck cancer patients. Therefore, we believe that addressing this existing knowledge gap would facilitate clinicians and health care providers to incorporate religion and spirituality to the holistic management protocols of head and neck cancer patients, thus embracing innovative approaches, and to address unmet supportive care needs of caregivers of those patients across cultures, countries, and health systems.

Inclusion of literature published only in the English language will be a limitation of this review.