Authors
- Madsen, Rikke RN, MScN, PhD student
- Uhrenfeldt, Lisbeth RN, MScN, PhD, Associate Professor
Abstract
Review question/objective: The objective of this review is to identify, appraise and synthesize the best available evidence exploring palliative patients' or their significant others' experiences of transitions during the course of incurable cancer. In this review, transitions are conceptualized as experiences concerning organizational, psychosocial and existential issues.
More specifically, the review question is:
What kinds of transitions do palliative patients and their significant others experience during the course of incurable cancer; in particular experiences relating to transitions concerning organizational, psychosocial and existential issues?
Background: Cancer is the leading cause of death worldwide.1 Specifically, 7.6 million people worldwide died from cancer in 2008 and deaths caused by cancer are expected to continue rising.1 In 2030, it is projected that 13.1 million people will die from cancer.1 Treating cancer requires a careful selection of one or more interventions such as surgery, radiology and/or chemotherapy.2 The treatment of cancer is complemented by psychological support. The goal of treatment is to cure cancer or to prolong life, while improving the patient's quality of life.
During the course of cancer, palliative care may be needed, the aim of which is to relieve rather than cure the symptoms caused by cancer.3 Palliative care aims to improve patients' and their families' experienced quality of life when facing life-threatening illness by providing pain and symptom relief, spiritual and psychosocial support from diagnosis to the end of life and bereavement.
An initial search in the databases CINAHL, Scopus, PsycINFO, PubMed, JBI COnNECT+, Cochrane Library, and Trip database shows that no systematic review on the proposed topic exists, or is currently underway. Findings from an initial search of existing reviews concerning experiences of transitions during the course of incurable cancer from the perspective of patients or significant others are centered around interventions and improving the experience of quality of life of adult cancer caregivers,4 distress and its management in couples facing incurable cancer,5 outcomes of bereavement interventions,6 relatives and preparing for the death of their loved one with cancer,7 advanced cancer patients' prognostic information preferences,8 depression assessment and classification in palliative cancer patients,9 potential factors relevant to coping in patients with advanced cancer,10 religion and coping with chronic illness,11 and why patients choose chemotherapy near the end of life.12 Most similar to the objective of this review, Blum and Sherman13 have conducted a review of transitions from the relatives' perspectives during the course of cancer and the topic 'existential needs', from a patient perspective was examined by Henoch and Danielson.14
From an organizational perspective, modern palliative care is closely connected to the development of the modern hospice movement, founded by Dame Cicely Saunders at St. Christopher Hospice in London 1967.15 The hospice philosophy has since proliferated and is now adopted worldwide. The word 'palliative' derives from the Latin word 'pallium' meaning a cover or cloak and 'palliative' is defined as 'to relieve without curing'.15 Often palliative care includes multidisciplinary staff such as nurses, doctors, physiotherapists, occupational therapists, chaplains and volunteers.15 Palliative care is centered on both patients and their relatives. Studies have found that relatives are an important resource and part of preparation concerning organizing and preparing psychologically for transfer from the intensive care unit to a medical ward.17 Also, including family members of chronically ill patients in physician patient communication has a positive effect on the patient's compliance and quality of life.18 In oncology nursing, families are acknowledged as a focus on care in many countries.19 Because of this central role of relatives in the course of cancer, both patients' and relatives' experiences of transitions will be included in this review.
Concerning the relevance of conducting this review, findings from existing studies that confirm patients and their significant others having experiences of transitions related to the topic of this review have been identified; it is known that patients navigating through the course of incurable cancer describe their experiences through the metaphors 'troubled water' and 'landmines'.20 Understanding the severity of suffering from incurable cancer takes time and at first denial can be experienced.21 Patients not only experience intra- and inter-hospital transitions as unpredictable, scary, stressful and as sliding into insignificance,22 but also from a positive perspective when transfer is experienced as transitions into recovery and relief. Transfers between care settings and providers in same care settings involve the risk of patients and their significant others experiencing negative transitions such as feeling abandoned, which does not meet their needs of continuity of care and smooth transitions.23 Furthermore, transfers between settings of care and between providers are opportunities for errors and thus negative experiences of transitions concerning communication about many aspects of care.23, 24 Focusing on transitions is important because: "Every transition begins with an ending".25(p11) "Meaning that people have to let go of familiar ways of being in the world that defines who they are".26(p320) Being in transition is a process which requires time as people gradually experience how they disengage from ways of defining self and old behaviour.27 Kralik et al.26 elaborates on transition with the sentence: "People undergo transition when they need to adapt to new situations or circumstances in order to incorporate the change event into their lives".26(p320) Significant others who are caring for a loved one suffering from incurable cancer experience both guilt and relief when their loved one is admitted to hospital and care thereby is handed over to hospital professionals.28 Also, significant others may feel helpless and alone during the course of incurable cancer; watching a loved one suffer and not being able to remove or reduce the suffering makes significant others experience death of their loved one as a relief.29 Results from these existing studies thereby show that incurable cancer patients and their significant others experience transitions concerning existential,20, 21, 22, 28, 29 psychosocial28 and organizational23, 24 issues. Currently, no systematic reviews exist concerning these experiences; therefore, it is important to provide further elaboration on the existing studies within this area. This review will contribute knowledge that professionals in health care can include in their clinical work when making a professional assessment of the palliative care needs of their patients or their relatives during the course of incurable cancer.
Definitions:
For the purpose of this review the following definitions will be used:
Palliative: Understood from WHO's definition of palliative care: "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 the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual".3
Patients: One who receives medical attention, care, or treatment.30
Significant other: A person, such as a family member or close friend, who is important or influential in one's life.30
Experiences: Understood from a phenomenological perspective including an openness to the experiences: "A phenomenological perspective includes a focus on the life world, an openness to the experiences of the subjects, a primacy of precise descriptions, attempts to bracket foreknowledge and a search for invariant essential meanings in the descriptions".31(p38-39)
Transition: "A transition denotes a change in health status, in role relations, in expectations, or in abilities. It denotes changes in needs of all human systems. Transition requires the person to incorporate new knowledge, to alter behavior and therefore to change the definition of self in social context, of a healthy or ill self, or of internal and external needs, that affects the health status".32(p42)
Organizational: Understood within the angle of 'corporate culture' described by Curtin: "The corporate culture embodies the organizational values that implicitly and explicitly specify norms, shape attitudes and guide the behaviors of the members of the organization".33(p219) This review will focus on organizational corporate culture from the perspective of patients and their significant others concerning their experiences with the following environments: hospitals, hospices, nursing homes, primary health care and outgoing specialized palliative care units.
Psychosocial: Understood from the definition of 'psychosocial oncology': "Psychosocial oncology is defined as a discipline that is concerned with all clinical and scientific attempts to clarify the significance of psychological and social factors in the development and course of cancer. Furthermore, it addresses psychological and social factors in the patient's and family's process of coping with the disease and attempts to apply this knowledge systematically to prevent, early detection, diagnosis, treatment, at rehabilitation of cancer patients"34(p580)
Existential: Understood from a phenomenological perspective described by Mackey: "Heidegger believed there were many ways for the human being to be-in-the-world but the most significant way was in being aware of one's own Being".35 That is, capable of inquiring into one's own being, capable of wondering about one's own existence.36,38 He named this state dasein. In Heidegger's terms, for the human being to exist asdasein is to exist 'authentically',36 because this gives access to awareness of one's own being (and also the potential for not being).37
Incurable: A person with a disease, which cannot be cured.38
Article Content
Inclusion criteria
Types of participants
This review will consider studies that include adults aged 18 years and above who are suffering from incurable cancer and/or significant others (current or bereaved) of a person who is suffering has suffered from incurable cancer.
Types of intervention(s)/phenomena of interest
This review will consider studies that investigate experiences of organizational, psychosocial, or existential transitions during the course of incurable cancer.
Context
The course of incurable cancer. Studies exploring euthanasia will be excluded because euthanasia is not included in the WHO definition of palliation.
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, action research and feminist research.
In the absence of research studies, other texts such as opinion papers and reports will be considered.
Search strategy
The search strategy aims to find both published and unpublished studies. A three-step search strategy will be utilized in this review. An initial limited search of PubMed, Scopus, PsycINFO and CINAHL will be undertaken, followed by analysis of the text words contained in the title and abstract and of the index terms used to describe the article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference lists of all identified reports and articles will be searched for additional studies. Studies published in English, Danish, German, Swedish and Norwegian will be considered for inclusion in this review. This review has no limitations concerning year of publication. Therefore, all relevant studies published in the included databases will be considered for inclusion in this review.
The databases to be searched include:
PubMed, CINAHL, Scopus, PsycINFO, Embase, SweMed+
The search for unpublished studies will include:
Google Scholar, Mednar, ProQuest and the following websites:
PAVI Knowledge Center for Palliative Care. Website: http://www.pavi.dk
European Association of Palliative Care (EAPC). Website: http://www.eapcnet.eu
World Cancer Research Fund International. Website: http://www.wcrf.org
Danish Multidisciplinary Cancer Group for Palliative Care. Website: http://www.dmcg-pal.dk
The Danish Cancer Society. Website: http://www.cancer.dk
Danish Health and Medicines Authority. Website: http://www.sst.dk/English.aspx
Initial keywords to be used will be:
Patient or patients or patients (MeSH) or patient (Emtree) or terminally ill (MeSH) or terminally ill patients (Headings, Emtree) or cancer patients (Headings, Emtree) or hospice patients (Headings) or dying patients (Thesaurus) or terminally ill patients (Thesaurus)
AND
Caregiver* or family or relative* or spouse or couple* or next-of-kin or loved one* or informal carer* or significant other* or family (MeSH, Headings, Emtree) or caregivers (MeSH, Headings) or caregiver burden (Headings, Thesaurus, Emtree) or family members (Thesaurus) or widows (Thesaurus) or widowers (Thesaurus) or couples (Thesaurus) or spouses (Thesaurus, MeSH) or spouse (Emtree) or significant others (Thesaurus, Headings) or family nursing (MeSH) or family health (Mesh, Emtree) or relative (Emtree)
AND
Advanced cancer or palliative care or palliation or terminal cancer or terminal illness or terminally ill or end of life/end-of-life or dying or late stage cancer or incurable cancer or terminal care (MeSH, Headings, Emtree) or palliative care (MeSH, Thesaurus, Headings) or terminally ill (MeSH) or cancer (MeSH) or terminal care (Headings, Emtree) or terminal disease (Emtree) or hospice and palliative nursing (Headings) or death and dying (Thesaurus) or terminal cancer (Thesaurus) or oncology (Thesaurus, Headings, Emtree) or neoplasm (Thesaurus, MeSH, Emtree) or advance care planning (MeSH) or advanced cancer (Emtree) or disease progression (MeSH) or attitude to death (MeSH) or hospice care (Headings, MeSH) or dying (Emtree) or cancer palliative therapy (Emtree) or palliative nursing (Thesaurus) or oncology nursing (Thesaurus)
AND
Experience* or perspective* or perceived or perception* or narrative* or narration* or phenomenology or hermeneutic or phenomenological-hermeneutic* or hermeneutic phenomenology or phenomenological or qualitative research or qualitative study or qualitative method* or nursing research or epidemiology or ethnography or phenomenography or conceptual analysis or Heidegger* or Gadamer* or Ricoeur* or Merleau-Ponty* or Husserl* or grounded theory or interview* or observation* or focus group* or qualitative research (MeSH, Thesaurus, Emtree) or qualitative studies (Headings) or qualitative analysis (Emtree) or research, nursing (Headings) or nursing research (MeSH, Emtree) or nursing methodology research (MeSH, Emtree) or clinical nursing research (Emtree) or life change events (MESH, Headings) or life experiences (Headings) or death (Headings) or catastrophic illness (Headings) or narratives (Headings) or narrative (Emtree) or personal narratives as topic (Mesh) or personal narratives (publication type) (MeSH) or personal experience (Emtree) or narration (Mesh) or life histories (Headings) or interviews (Headings, Thesaurus) or interview as topic (MeSH) or interview (publication type) (MeSH) or interview (MeSH, Emtree) or observation methods (Thesaurus) or observational methods (Headings) or observational study (Emtree) or focus groups (MeSH) or observation (MeSH) or grounded theory (Thesaurus) or data collection (Thesaurus) or empirical methods (Thesaurus) or empirical research (MeSH) or phenomenology (Thesaurus, Headings) or Hermeneutics (Thesaurus) or Ethnography (Thesaurus, Emtree) or ethnology (Thesaurus, Emtree) or anthropology (Thesaurus, Emtree) or anthropology, cultural (Headings) or epidemiology (MeSH, Headings) or anthropology, nursing (MeSH) or Philosophy, nursing (MeSH, Headings) or sociology (MeSH, Headings, Emtree) or humanism (MeSH)
AND
Transition* or shift* or transience or transfer or critical event* or discharge* or ending* or transcendence or handoff* or sign-out* or handover or transfer/psychology (MESH) or patient discharge (Thesaurus) or transfer, discharge (Headings) or transfer, psychology (Headings) or transfer, intrahospital (Headings) or patient transfer (Thesaurus, MeSH) or client transfer (Thesaurus) or patient care planning (Thesaurus, MeSH, Emtree) or patient care management (MeSH) or discharge planning (Thesaurus) or hospital discharge (Thesaurus, Emtree) or facility discharge (Thesaurus) or patient handoff (MeSH) or handoff (patient safety) (Headings) or patient safety (MeSH) or patient navigation (MeSH) or patient discharge (MeSH) or continuity of patient care (MeSH) or clinical handover (Emtree)
AND
Organizational or hospice or hospital or homecare/home care or team or ward or unit or palliative team* or palliative care team* or palliative homecare/home care team* or specialist palliative care or primary health care or speciali?ed palliative care or hospital-based care or palliative care outpatient unit or health care administration (Thesaurus) or health care services (Thesaurus) or health care delivery (Thesaurus) or hospital administration (Thesaurus, MeSH) or nursing homes (Thesaurus, Headings, MeSH) or nursing home (Emtree) or nursing home patients (Headings) or nursing home patient (Emtree) or hospitals (Thesaurus, MeSH) or hospital units (MeSH, Headings) or hospice (Thesaurus) or home care (Thesaurus, Emtree) or home health care (Headings) or home health care delivery (Headings) or primary health care (Thesaurus, MeSH, Headings, Emtree) or home care services, hospital-based (MeSH) or home care services (MeSH) or health care facilities and services (Emtree) or visiting nursing services (Emtree) or oncology service, hospital (MeSH) or oncology care units (Headings) or hospital, special (MeSH) or out-patient clinics, hospital (MeSH) or cancer center (Emtree) or oncology ward (Emtree) or outpatient service (Headings) or multidisciplinary care team (Headings) or inpatients (MeSH) or hospital patient (Emtree) or ethics, institutional (MeSH) or nursing team (MeSH) or outpatient treatment (Thesaurus) or outpatients (Thesaurus, MeSH, Headings) or outpatient (Emtree) or patient care management (MeSH) or patient care (MeSH, Emtree) or patient-centered care (MeSH) or patient centered care (Headings) or patient care team (MeSH) or hospice care (MeSH, Headings) or hospices (MeSH, Headings) or cancer care facilities (MeSH, Headings) or organization and administration (MeSH) or organizations (MeSH) or organization (Emtree)
AND
Psychosocial or psychological or social well-being or social wellbeing or interpersonal relation* or social support or psycho-existential or psychosocial oncology or psychosocial care or oncology social work or psychology (MESH, Emtree) or psychology, social (MeSH) or social psychology (Emtree) or psychosocial support (MESH) or support, psychosocial (Headings) or Psychosocial aspects of illness (Headings) or psychosocial factors (Thesaurus) or psychological needs (Thesaurus) or interpersonal relationships (Thesaurus) or interpersonal relations (MeSH, Headings) or human relation (Emtree) or social support (MeSH, Emtree) or taboo (MeSH, Thesaurus) or caregiver support (Headings) or psychosocial care (Emtree) or social care (Emtree)
AND
Existential* or spiritual* or religious or metaphysic or authentically or authentic or authentic being or meaning-making or hope or suffering or dignity or existentialism/psychology (MESH) or spirituality (Headings, Thesaurus, MeSH) or spiritual well-being (Headings) or spiritual care (Headings, Emtree) or spiritual support (Headings) or religion and psychology (Headings, MeSH) or spiritual distress (Headings) or spiritual healing (Headings) or existentialism (Thesaurus, MeSH, Emtree) or metaphysics (Thesaurus, MeSH, Headings, Emtree) or religious experiences (Thesaurus) or religious belief (Thesaurus) or religiosity (Thesaurus) or religion (Thesaurus, MeSH, Emtree) or soul (Thesaurus) or life (MeSH, Emtree)
AND
Anticipatory grief or burden or bereaved or bereavement or grief or mourning or distress or need* or bereavement (MeSH, Headings, Thesaurus, Emtree) or grief (MeSH, Thesaurus, Headings, Emtree) or suffering (Thesaurus, Headings) or anticipatory grieving (Headings) or anticipatory grief (Emtree) or bereavement support (Headings) or mourning (Emtree)
Assessment of methodological quality
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 the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). In the absence of research studies, expert opinion texts and reports will be included and assessed using the Joanna Briggs Institute Assessment and Review Instrument (NOTARI) (Appendix II). Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer.
Data collection
Data will be extracted from papers included in the review using the standardized data extraction tool from JBI-QARI (Appendix III). In the absence of research studies, expert opinion texts and reports will be included and from here data will be extracted using the standardized data extraction tool from JBI NOTARI (Appendix IV). The data extracted will include specific details about the phenomena of interest, populations, study methods and outcomes of significance to the review question and specific objectives.
Data synthesis
Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality and categorizing these findings on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis in order 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.
Conflicts of interest
None
Acknowledgements
We wish to thank Librarian Karin Friis Velbaek for her professional assistance in the process of creating a search strategy for this review and Research Secretary Line Jensen for proofreading.
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Appendix I: Appraisal instruments
QARI appraisal instrument
NOTARI appraisal instrument[Context Link]
Appendix II: Data extraction instruments
QARI Data Extraction Form
NOTARI Data Extraction form[Context Link]
Keywords: Lived experience; incurable cancer; patient; significant other; transition; organizational; psychosocial; existential