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SYSTEMATIC REVIEW PROTOCOLS

Experiences of newly diagnosed cancer patients in confronting the finitudes of life: a qualitative systematic review protocol

Stanic, Jelena1; Perrenoud, Béatrice2,3; Rochat, Etienne3; Ballabeni, Pierluigi1; Jaques, Cécile3; Schaer-Chaudhry, Anne-Claude1; Zumstein-Shaha, Maya4

Author Information
JBI Database of Systematic Reviews and Implementation Reports: December 2018 - Volume 16 - Issue 12 - p 2288-2294
doi: 10.11124/JBISRIR-2017-003621
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Abstract

Introduction

In 2012, more than 14 million people worldwide had been diagnosed with cancer.1 Over the next 20 years, cancer is expected to increase globally by 70%.2 Despite advances in oncology, cancer – considered a chronic disease3 – continues to cause many deaths every year. Cancer constitutes the second most frequent cause of death globally. In 2015, more than eight million individuals died from cancer worldwide.1 A diagnosis of cancer leads to an increased awareness of the finitude of life, questioning of life's meaning, and confrontation of one's mortality.4-9 Existential concerns include re-viewing and critically appraising life's meaning or the self.6,8 Therefore, patients with a new diagnosis of any cancer are not only confronted with the initiation of anti-cancer treatments, but also existential challenges, regardless of the cultural and social origin of the patient.

For the person concerned, a diagnosis of cancer signifies confronting one's own mortality and experiencing a sense of the finitude of life,10-12 which is also called “transitoriness”.9,13-18 This concept of transitoriness is defined as a reaction to the diagnosis of cancer, difficulties in forecasting the future, and adaptation to the awareness of the transitory nature of life.9,14,16 This sense of transitoriness appears with the diagnosis of cancer, early in the disease trajectory.9,14,16 Patients experience anxiety,14,19,20 uncertainty,14,21-23 loss of control,8,24,25 anger,8,14,23 despair,8,9,26 depression,27-29 and/or distress.4,30,31 There are concerns related to death,28,30,32 functional impairment of life and negative consequences on quality of life,5,33,34 which may result from these negative experiences. Finding meaning in illness becomes an important step.35 Moreover, the phase following the diagnosis is a particularly sensitive period punctuated by examinations and therapeutic treatments,9,22,23,36 which can lead to side effects. Individuals undergoing oncological therapies are not sure they will survive the treatments or how life will continue after the initial disease phase.22,23,28 Patients do express the need to talk about existential issues during the early phase of cancer.9,37

A person diagnosed with cancer experiences symptoms of the disease as well as an existential upheaval. The TEAMM model by Lee and Loiselle23(p.123) proposes that patients perceive three “types of threats”, namely, “social awareness”, which refers to the life-threatening aspects of cancer; “personalized awareness”, which refers to the life-threat as perceived by the person concerned; and “lived experience”, which indicates the feelings of the persons concerned that they are dying from cancer. The threat to life that cancer induces is experienced as early as with diagnosis and continues throughout the disease trajectory. Potential responses to this threat include isolation or social withdrawal.23

Due to the life-threatening aspects of cancer, patients are confronted with existential concerns and the transitory nature of life, as well as the demand to continue daily life as normally as possible. Lethborg et al. propose that there is a threefold experience of meaning in patients with cancer comprising: “suffering as an expression of the reality of the disease”, “coping as the efforts of patients to adapt to the impact of cancer”, and “meaning as the patients’ success in continuing life meaningfully”.34(p.378) Patients switch between these three experiences, depending on the most pressing demands of the situation. Being diagnosed with cancer and living with it engenders existential, psychological and physical distress. It is demonstrated that higher physical and existential distress is associated with higher psychological distress. Patients who have high social support and consider their life as meaningful have lower levels of psychological and existential distress. Higher existential distress is linked to lower global meaning. Also, high social support is related to higher global meaning.34 A cancer diagnosis does not only signify distressing physical issues, but also implies psychological and existential issues that weigh on patients and influence treatment and care. It is therefore important to provide support to these patients to improve their connection with others and promote ways to address existential concerns.34

In a Swedish study, patients with breast cancer undergoing curative treatment experienced challenging existential situations. The themes they described included questioning the meaning of life and the existence of God or another higher power. The patients experienced a sense of loss. They were concerned about going back to work and living life normally. Values regarding life and health had changed due to the cancer diagnosis and its subsequent treatment. Some patients received support from their families. However, these patients did not expect support from health professionals. Another group of patients would have welcomed support from health professionals, and minded when no support was forthcoming. According to these patients, the healthcare institution did not provide support and neither did the healthcare professionals. Patients also required more information on cancer, its development and future impact on life.5

Patients with hematological cancer who needed to undergo allogeneic stem-cell transplantation in Great Britain described their distress as “the immediacy of illness and existential crisis”.22(p.91) These patients highlighted that the cancer and its subsequent treatment constituted a thorough break in their life. Patients were faced with the transitory nature of life due to the life-threatening disease and its aggressive treatment. The patients experienced periods of high uncertainty and ambiguity in relation to the disease. Besides needing support for managing the disease, its symptoms and treatment side-effects, these patients needed support for living through the existential crisis. Patients needed guidance to overcome the crisis and to move on and return home after allogeneic stem-cell transplantation. Lacking support to manage existential aspects of this disease and its treatments can lead to impaired recovery, emotional and social wellbeing, increased and prolonged uncertainty, fear and psychosocial distress. Therefore, it is recommended that patients with cancer and their families receive psychosocial support to be better equipped to address associated distress, and to be better able to pick up life again.22

Similarly, women with newly diagnosed breast cancer in Norway identified “the will to live” as a core element in their cancer experience. One important aspect of this experience was the confrontation with life's finitude. These women described it as “the fight against death”.28(p.223) Thoughts about their potential demise and about other persons’ death were present. From the perspective of these women, the perception of daily life had changed due to the confrontation with finitude. Worries about the future were present and accompanied these women. They described strategies such as living day-by-day. The results of this study highlighted that health professionals need to recognize the existential dimension of a cancer diagnosis and to provide support to the patients.28

Patients who had recently received a diagnosis of cancer, were undergoing anti-cancer treatment or had just completed initial anti-cancer treatment, participated in a qualitative study about their experience conducted in Great Britain. Findings demonstrated that the diagnosis of cancer constituted a major disruption in life. Patients’ primary aim was to re-establish normality as much as possible, and to re-connect to life before the diagnosis. However, establishing continuity of one's identity prior to the diagnosis can be a struggle. Patients devised various ways of obtaining normality after a cancer diagnosis among which include “becoming someone new” or “normalizing mortality”.4(p.184)

Despite the existential challenges related to the experience of facing the finitude of life, no synthesis of the current evidence about the experiences of newly diagnosed cancer patients on this topic has been conducted. A qualitative review focusing on this experience will provide invaluable information and understanding that can contribute to the development of interventions to offer more tailored support to this patient group.

A preliminary search on the topic for this systematic review was carried out in MEDLINE, the JBI Database of Systematic Reviews and Implementation Reports and the Cochrane Database of Systematic Reviews. To date, no qualitative systematic review specific to the experience related to the confrontation of the finitude of life of newly diagnosed cancer patients undergoing initial treatment exists. Only one integrative review6 considers existential concerns linked to cancer. However, this review is not specific to the context of the cancer patients undergoing initial treatment. In addition, the existing systematic reviews38-43 are not specifically centered on finitude of life nor thoughts of death. These systematic reviews also do not focus specifically on the initial treatment phase.

Therefore, this qualitative systematic review aims at identifying and describing the experiences of newly diagnosed patients with cancer facing finitude of life – or transitoriness – during initial oncologic treatment.

Inclusion criteria

Participants

This review will consider publications that include adult patients (18 years and over) of all gender and ethnic groups, newly diagnosed with cancer and who are undergoing initial oncologic treatment. The term “newly diagnosed” refers to patients who have received a diagnosis of cancer at least less than three months from the time of inclusion in a study or who are not considered to have disease progression, i.e. labelled “advanced cancer”. The term “treatment” refers to surgery, radiotherapy, chemotherapy, hormone therapy, immunotherapy or any other anti-cancer therapy. There will be no exclusion criteria related to cancer type, disease stage, other ongoing medical treatments, co-morbidities, and socio-demographic factors – except for age. Patients with advanced cancer, patients at end-of-life, and patients with terminal disease will not be considered.

Phenomena of interest

This qualitative review will consider all qualitative studies that report on the experiences of newly diagnosed patients with cancer who are confronted with the finitude of life and undergoing initial anti-cancer treatment.

Context

This qualitative systematic review will consider literature from acute hospital care settings such as oncology, surgery and outpatient oncology settings as well as primary and community care settings. Literature referring to advanced cancer, end-of-life or terminal care, or rehabilitation will be excluded. The review will consider publications from any geographical location (e.g. urban, rural and remote) in any country.

Types of studies

The qualitative review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and case study. Studies containing mixed methods research (both qualitative and quantitative) relating to this topic will also be considered. In such cases, qualitative data from such studies will be extracted and included in this review. Descriptive qualitative studies that describe the experience or describe the consequences of the experience will also be considered.

Methods

Search strategy

The search strategy aims to find both published and unpublished studies.44 A three-step search strategy will be applied. An initial limited search of MEDLINE Ovid and Web of Science has been undertaken followed by analysis of the text words contained in the titles and abstracts, and of the index terms used to describe each article. This informed the development of a search strategy which will be tailored for each information source. A full search strategy for MEDLINE Ovid is detailed in Appendix I. The reference list of all articles selected for critical appraisal will be screened to identify other relevant studies. Articles written in English, French or German will be considered for inclusion in this review. There will be no date limit on this review.

Information sources

The databases to be searched include: MEDLINE Ovid, Web of Science, Embase, CINAHL, PsycINFO and Sociological Abstracts.

The search for unpublished studies will include: ProQuest Dissertations and Theses, DART-Europe and BASE, and Google Scholar.

Websites of national cancer associations or networks to be searched include: NCCN.org, cancer.gov, cancer.org, swisscancer.ch, and bag.admin.ch.

Study selection

Following the search, all identified citations will be collated, uploaded into Endnote x8 (Clarivate Analytics, PA, USA) and duplicates removed. Titles and abstracts will then be screened by two independent reviewers for assessment against the inclusion criteria for the review. Studies that may meet the inclusion criteria will be retrieved in full and their full text will be assessed in detail against the inclusion criteria. Citations and details of eligible full text studies will be imported into the Joanna Briggs Institute System for the Unified Management, Assessment and Review of Information (JBI SUMARI) (Joanna Briggs Institute, Adelaide, Australia). Full text studies that do not meet the inclusion criteria will be excluded and reasons for exclusion will be provided in an appendix in the final systematic review report. Included studies will undergo a process of critical appraisal. The results of the search will be reported in full in the final report and presented in a PRISMA flow diagram. Any disagreements that arise between the reviewers will be resolved through discussion or with a third reviewer.

Assessment of methodological quality

Selected studies will be critically appraised by two independent reviewers at the study level for methodological quality using the JBI Critical Appraisal Checklist for Qualitative Research.44 Any disagreements that may arise between the reviewers will be resolved through discussion or with a third reviewer. The results of critical appraisal will be reported in narrative form and in a table. All studies, regardless of the results of their methodological quality, will undergo data extraction and synthesis (where possible).

Data extraction

Qualitative data will be extracted from papers included in the review using the standardized data extraction tool from JBI SUMARI44 by two independent reviewers. The data extracted will include specific details about the populations, context, culture, geographical location, study methods and the phenomena of interest relevant to the review question and specific objectives. Authors of primary studies will be contacted if information is missing or unclear.

Data synthesis

Qualitative research findings will, where possible, be pooled using JBI SUMARI44 with the meta-aggregation approach. 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 based on similarity in meaning. These categories will then be subjected to a meta-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 certainty 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.45 The Summary of Findings includes the major elements of the review and details how the ConQual score is developed. Included in the table is the title, population, phenomena of interest and context for the specific review. Each synthesized finding from the review is then presented along with the type of research informing it, a score for dependability, credibility and the overall ConQual score.

Appendix I: Search strategy for MEDLINE Ovid

(‘neoplasm’/exp OR (adenoma OR blastoma OR cancer OR carcinogen OR carcinom OR carcinosarcoma OR chordoma OR germinoma OR gonadoblastoma OR hepatoblastoma OR (hodgkin NEXT/1 disease) OR leukemi OR lymphangioma OR lymphangiomyoma OR lymphangiosarcoma OR lymphom OR melanom OR meningioma OR mesenchymoma OR mesonephroma OR metasta OR neoplas OR neuroma OR nsclc OR oncogen OR oncolog OR paraneoplastic OR plasmacytoma OR sarcoma OR teratocarcinoma OR teratoma OR tumor OR tumour):ab,ti,kw)

AND

(‘attitude to death’/de OR ‘existentialism’/de OR ((‘death’/de OR ‘dying’/de) AND (‘fear’/de OR ‘thinking’/de OR ‘anxiety’/de)) OR (((Death OR “end of life” Or dying OR die OR finit OR mortality OR funerary) NEAR/5 (attitude OR thought OR think OR view OR anxiet OR anxious OR salience OR belief OR believe OR concern? OR scare OR frighten OR confront OR worry OR worries OR fear OR afraid OR awareness OR preocup)) OR (Finit NEAR/3 (life OR existence)) OR Transitoriness OR liminality OR existential OR ((spiritual OR existential) AND (Death OR “end of life” Or dying OR die OR finit OR mortality OR funerary))):ab,ti,kw)

AND

(‘cancer therapy’/exp OR ‘neoplasm’/exp/dm_dt,dm_rt,dm_su,dm_th OR (therap OR treatment OR surgery OR surgical OR radiotherap OR chemotherap OR hormonotherap OR immunotherap OR ((recent OR new OR confronted OR initial OR announc OR first OR within OR earl) NEAR/3 diagnos) OR “after cancer diagnosis” OR “after a diagnosis” OR “initial phase” OR “acute phase” OR “induction phase”):ab,ti,kw)

AND

(qualitative OR interview OR findings OR ‘qualitative research’/exp)

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Keywords:

Cancer; existential challenges; finitude of life; initial diagnosis; transitoriness

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