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1.  Caring for Dying and Meeting Death: Experiences of Iranian and Swedish Nurses 
Objective:
Our world is rapidly becoming a global community, which creates a need to further understand the universal phenomena of death and professional caring for dying persons. This study thus was conducted to describe the meaning of nurses’ experiences of caring for dying people in the cultural contexts of Iran and Sweden.
Materials and Methods:
Using a phenomenological approach, phenomenon of caring for dying people was studied. Eight registered nurses who were working in oncology units in Tehran, Iran and eight registered nurses working in hospital and home care in North part of Sweden were interviewed. The interviews were analyzed using the principles of phenomenological hermeneutics.
Results:
The findings were formulated based on two themes included: (1) “Sharing space and time to be lost”, and (2) “Caring is a learning process.
Conclusions:
The results showed that being with dying people raise an ethical demand that calls for personal and professional response, regardless of sex, culture or context. The physical and organizational context must be supportive and enable nurses to stand up to the demands of close relationships. Specific units and teamwork across various personnel seem to be a solution that is missing in Iran.
doi:10.4103/0973-1075.68405
PMCID: PMC3144438  PMID: 21811355
Caring for dying; Iranian nurses; Oncology; Palliative care; Swedish nurses
2.  End-of-life experiences of nurses and physicians in the newborn intensive care unit 
Objective
To explore nurses’ and physicians’ end-of-life (EOL) experiences in the newborn intensive care unit.
Study Design
A hermeneutic phenomenology of health-care providers’ lived experiences with infant deaths in the newborn intensive care unit between January and August 2006 was conducted. Semistructured interviews were completed with individual providers. Demographic data were also collected. Analysis of themes and descriptive statistics were performed.
Result
Twenty-one nurses and 11 physicians were interviewed. Providers described their experiences largely through an overall theme of ‘creating the best possible experience’ for parents. To support this theme, three subthemes (building relationships, preparing for the EOL and creating memories) were common between physicians and nurses. However, nurses and physicians articulated their roles and obligations differently within these subthemes. Additionally, three subthemes through which the providers described their personal experiences were found and these included moral distress, parental readiness and consent for autopsy.
Conclusion
A primary finding of this study was that a common overall obligation among nurses and physicians was to create the best possible experience for parents. Despite this commonality, the two disciplines approached the EOL and accomplished their common obligation from different vantage points.
doi:10.1038/jp.2008.96
PMCID: PMC3612702  PMID: 18596708
health-care provider obligations; relationships; hermeneutic phenomenology; moral distress
3.  Administration of care to older patients in transition from hospital to home care services: home nursing leaders’ experiences 
Background
Older persons in transition between hospital and home care services are in a particularly vulnerable situation and risk unfortunate consequences caused by organizational inefficiency. The purpose of the study reported here was to elucidate how home nursing leaders experience the administration of care to older people in transition from hospital to their own homes.
Methods
A qualitative study design was used. Ten home nursing leaders in two municipalities in southern Norway participated in individual interviews. The interview texts were audio taped, transcribed verbatim and analyzed by use of a phenomenological-hermeneutic approach.
Results
Three main themes and seven subthemes were deduced from the data. The first main theme was that the home nursing leaders felt challenged by the organization of home care services. Two subthemes were identified related to this. The first was that the leaders lacked involvement in the transitional process, and the second was that they were challenged by administration of care being decided at another level in the municipality. The second main theme found was that the leaders felt that they were acting in a shifting and unsettled context. Related to this, they had to adjust internal resources to external demands and expectations, and experienced lack of communication with significant others. The third main theme identified was that the leaders endeavored to deliver care in accordance with professional values. The two related subthemes were, first, that they provided for appropriate internal systems and routines, and, second, that they prioritized available professional competence, and made an effort to promote a professional culture.
Conclusion
To meet the complex needs of the patients in a professional way, the home nursing leaders needed to be flexible and pragmatic in their administration of care. This involved utilizing available professional competence appropriately. The coordination and communication between the different organizational levels and units were pointed out as major factors requiring improvement.
doi:10.2147/JMDH.S51947
PMCID: PMC3794989  PMID: 24124378
cooperation; geriatric patients; home nursing leaders; phenomenological-hermeneutic method; prioritization; transitional care
4.  Experiences of Living and Dying With COPD 
Executive Summary
In July 2010, the Medical Advisory Secretariat (MAS) began work on a Chronic Obstructive Pulmonary Disease (COPD) evidentiary framework, an evidence-based review of the literature surrounding treatment strategies for patients with COPD. This project emerged from a request by the Health System Strategy Division of the Ministry of Health and Long-Term Care that MAS provide them with an evidentiary platform on the effectiveness and cost-effectiveness of COPD interventions.
After an initial review of health technology assessments and systematic reviews of COPD literature, and consultation with experts, MAS identified the following topics for analysis: vaccinations (influenza and pneumococcal), smoking cessation, multidisciplinary care, pulmonary rehabilitation, long-term oxygen therapy, noninvasive positive pressure ventilation for acute and chronic respiratory failure, hospital-at-home for acute exacerbations of COPD, and telehealth (including telemonitoring and telephone support). Evidence-based analyses were prepared for each of these topics. For each technology, an economic analysis was also completed where appropriate. In addition, a review of the qualitative literature on patient, caregiver, and provider perspectives on living and dying with COPD was conducted, as were reviews of the qualitative literature on each of the technologies included in these analyses.
The Chronic Obstructive Pulmonary Disease Mega-Analysis series is made up of the following reports, which can be publicly accessed at the MAS website at: http://www.hqontario.ca/en/mas/mas_ohtas_mn.html.
Chronic Obstructive Pulmonary Disease (COPD) Evidentiary Framework
Influenza and Pneumococcal Vaccinations for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Smoking Cessation for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Community-Based Multidisciplinary Care for Patients With Stable Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Pulmonary Rehabilitation for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Long-Term Oxygen Therapy for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Noninvasive Positive Pressure Ventilation for Acute Respiratory Failure Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Noninvasive Positive Pressure Ventilation for Chronic Respiratory Failure Patients With Stable Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Hospital-at-Home Programs for Patients With Acute Exacerbations of Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Home Telehealth for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Cost-Effectiveness of Interventions for Chronic Obstructive Pulmonary Disease Using an Ontario Policy Model
Experiences of Living and Dying With COPD: A Systematic Review and Synthesis of the Qualitative Empirical Literature
For more information on the qualitative review, please contact Mita Giacomini at: http://fhs.mcmaster.ca/ceb/faculty_member_giacomini.htm.
For more information on the economic analysis, please visit the PATH website: http://www.path-hta.ca/About-Us/Contact-Us.aspx.
The Toronto Health Economics and Technology Assessment (THETA) collaborative has produced an associated report on patient preference for mechanical ventilation. For more information, please visit the THETA website: http://theta.utoronto.ca/static/contact.
Objective of Analysis
The objective of this analysis was to review empirical qualitative research on the experiences of patients with chronic obstructive pulmonary disease (COPD), informal caregivers (“carers”), and health care providers—from the point of diagnosis, through daily living and exacerbation episodes, to the end of life.
Clinical Need and Target Population
Qualitative empirical studies (from social sciences, clinical, and related fields) can offer important information about how patients experience their condition. This exploration of the qualitative literature offers insights into patients’ perspectives on COPD, their needs, and how interventions might affect their experiences. The experiences of caregivers are also explored.
Research Question
What do patients with COPD, their informal caregivers (“carers”), and health care providers experience over the course of COPD?
Research Methods
Literature Search
Search Strategy
Literature searches for studies published from January 1, 2000, to November 2010 were performed on November 29, 2010, using OVID MEDLINE; on November 26, 2010, using ISI Web of Science; and on November 28, 2010, using EBSCO Cumulative Index to Nursing and Allied Health Literature (CINAHL). Titles and abstracts were reviewed by a single reviewer and, for those studies meeting the eligibility criteria, full-text articles were obtained. One additional report, highly relevant to the synthesis, appeared in early 2011 during the drafting of this analysis and was included post hoc.
Inclusion Criteria
English-language full reports
studies published between January 1, 2000, and November 2010
primary qualitative empirical research (using any descriptive or interpretive qualitative methodology, including the qualitative component of mixed-methods studies) and secondary syntheses of primary qualitative empirical research
studies addressing any aspect of the experiences of living or dying with COPD from the perspective of persons at risk, patients, health care providers, or informal carers; studies addressing multiple conditions were included if COPD was addressed explicitly
Exclusion Criteria
studies addressing topics other than the experiences of living or dying with COPD from the perspective of persons at risk, patients, health care providers, or informal carers
studies labelled “qualitative” but not using a qualitative descriptive or interpretive methodology (e.g., case studies, experiments, or observational analysis using qualitative categorical variables)
quantitative research (i.e., using statistical hypothesis testing, using primarily quantitative data or analyses, or expressing results in quantitative or statistical terms)
studies that did not pose an empirical research objective or question, or involve the primary or secondary analysis of empirical data
Outcomes of Interest
qualitative descriptions and interpretations (narrative or theoretical) of personal and social experiences of COPD
Summary of Findings
Experiences at Diagnosis
Patients typically seek initial treatment for an acute episode rather than for chronic early symptoms of COPD.
Many patients initially misunderstand terms such as COPD, chronic obstructive pulmonary disease, or exacerbation.
Patients may not realize that COPD is incurable and fatal; some physicians themselves do not consider early COPD to be a fatal disease.
Smokers may not readily understand or agree with the idea that smoking caused or worsens their COPD. Those who believe there is a causal link may feel regret or shame.
Experiences of Living Day to Day
COPD patients experience alternating good days and bad days. A roller-coaster pattern of ups and downs becomes apparent, and COPD becomes a way of life.
Patients use many means (social, psychological, medical, organizational) to control what they can, and to cope with what they cannot. Economic hardship, comorbidities, language barriers, and low health literacy can make coping more difficult.
Increasing vulnerability and unpredictable setbacks make patients dependent on others for practical assistance, but functional limitations, institutional living or self-consciousness can isolate patients from the people they need.
For smokers, medical advice to quit can conflict with increased desire to smoke as a coping strategy.
Many of the factors that isolate COPD patients from social contact also isolate them from health care.
Experiences of Exacerbations
Patients may not always attribute repeated exacerbations to advancing disease, instead seeing them as temporary setbacks caused by activities, environmental factors, faltering self-management, or infection.
Lack of confidence in community-based services leads some patients to seek hospital admission, but patients also feel vulnerable when hospitalized. They may feel dependent on others for care or traumatized by hospital care routines.
Upon hospital discharge following an exacerbation, patients may face new levels of uncertainty about their illness, prognosis, care providers, and supports.
Experiences of the End of Life
Patients tend to be poorly informed about the long-term prognosis of COPD and what to expect toward the end of life; this lack of understanding impairs quality of life as the disease progresses.
As the end of life approaches, COPD patients face the usual challenges of daily living, but in a context of increasing exacerbations and deepening dependency. Activities and mobility decrease, and life may become confined.
Some clinicians have difficulty identifying the beginning of “the end of life,” given the unpredictable course of COPD. Long-term physician-patient relationships, familiarity and understanding, trust, good communication skills, sensitivity, and secure discussion settings can help facilitate end-of-life discussions.
Divergent meanings and goals of palliative care in COPD lead to confusion about whether such services are the responsibility of home care, primary care, specialty care, or even critical care. Palliative end-of-life care may not be anticipated prior to referral for such care. A palliative care referral can convey the demoralizing message that providers have “given up.”
Experiences of Carers
Carers’ challenges often echo patients’ challenges, and include anxiety, uncertainty about the future, helplessness, powerlessness, depression, difficulties maintaining employment, loss of mobility and freedoms, strained relationships, and growing social isolation.
Carers feel pressured by their many roles, struggling to maintain patience when they feel overwhelmed, and often feeling guilty about not doing enough.
Carers often face their own health problems and may have difficulty sustaining employment.
Synthesis: A Disease Trajectory Reflecting Patient Experiences
The flux of needs in COPD calls for service continuity and flexibility to allow both health care providers and patients to respond to the unpredictable yet increasing demands of the disease over time.
PMCID: PMC3384365  PMID: 23074423
5.  Undergraduate nursing students caring for cancer patients: hermeneutic phenomenological insights of their experiences 
Background
The care of patients suffering from cancer and especially those facing the death trajectory appears to be complex and demanding not only for student nurses but for professional nurses as well. The educational models often used in nursing require students to face challenging care scenarios, sometimes with minimal or no supervision and guidance. These “worst case scenarios” can be traumatic experiences that can leave the student hopeless and disappointed of themselves and in many cases can “scar” their subsequent professional career. The literature demonstrates that this can be the result of the students’ ill-preparation to care for cancer patients and deal with death and dying. The purpose of this study was to interpret the students’ experiences of coming face-to-face with cancer care during their clinical placements.
Methods
This is a hermeneutic phenomenological study influenced by the ideas of the French Philosopher Paul Ricoeur. Based on this philosophical enquiry the interpretation process included three stages: 1) naïve reading, 2) structural analysis and 3) comprehensive understanding. Data were collected through reflective/narrative diaries from the 4th grade undergraduate (pre-registration) nursing students practicing at oncology, hematology, pediatric oncology departments and hospices. Diaries of twelve students met the inclusion criteria and were included in the interpretation process. The study took place during January and May 2011.
Results
The interpretation yielded the following themes: a) Being part of the center’s life, b) Being sympathetic, c) Being confronted by others, d) Being self-reflective, e) Being trapped in the system, f) Being caring towards the family and g) Being better in clinical practice.
Conclusions
The students emphasized the need for appropriate preparation both at a theoretical and at a clinical level, as to better confront situations involving death and dying as well as learning techniques for crisis management. The students perceived the importance of adopting a policy that is both patient and family-centered in order to provide better care.
doi:10.1186/1472-6963-13-63
PMCID: PMC3582535  PMID: 23414528
Death; Nursing students; Cancer care; Reflective diaries; Clinical placements; Hermeneutic phenomenology
6.  When expressions make impressions—Nurses’ narratives about meeting severely ill patients in home nursing care: A phenomenological-hermeneutic approach to understanding 
Registered nurses (RNs) working in homecare encounter severely ill and palliative patients whose expressions may cause ethical challenges and influence their daily work. The aim of this qualitative study was to illuminate and interpret the meaning of nurses’ lived experiences when meeting these patients. Narrative interviews were conducted with 10 RNs working in home nursing care. These interviews were audiotaped and transcribed verbatim to a text and interpreted by a phenomenological-hermeneutic method inspired by Ricoeur. The meaning of the RNs’ lived experience of patients’ expressions was formulated into four themes. The first theme, Being open for the presence of the Other, includes two subthemes: “Sensing vulnerability” and “Empathizing with.” The second theme, Being satisfied, entails the subthemes, “Feeling exceptional” and “Being trusted.” The third theme, Being frustrated, contains the subthemes, “Being disappointed” and “Being angry.” The fourth and final theme, Being ambivalent, includes one subtheme: “Being generous or reserved.” Patients’ expressions that make impressions on nurses create emotional waves. Expressions leave impressions that call upon the nurse, and confront her with taking the risk of letting intuition and pre-reflexive feelings gain entry to her care. Allowing for the Other's presence is seen as a precondition, which means facing humanity and sensing a vulnerability in herself as well as in the Other. Understanding and balancing this emotional dimension in care seems to cause confusion and distress within the nurses. Realizing how their feelings may lead to either generosity or aloofness towards the patient is upsetting. Our interpretation suggests that these impressions echo confusion according to the role of being a professional nurse. There is a need to pay more attention to how the emotional dimension in care is understood and impacts the way nurses perform their professional role.
doi:10.3402/qhw.v8i0.21880
PMCID: PMC3800125  PMID: 24138930
Nurse–patient interactions; emotional dimension; touch; home nursing care; palliative care; professional identity; phenomenological-hermeneutic approach
7.  Cultural and religious considerations in pediatric palliative care 
Palliative & supportive care  2012;11(1):47-67.
Objective
A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care.
Method
Comprehensive literature searches were completed through an online search of nine databases for articles published between 1980 and 2011: PsychINFO, MEDLINE®, Journal of Citation Reports-Science Edition, Embase, Scopus, CINAHL®, Social Sciences Citation Index (SSCI), EBSCO, and Ovid. Key terms included: culture, transcultural, spiritual, international, ethnic, customs or religion AND end-of-life, palliative care, death, dying, cancer, or hospice, and children, pediatrics, or pediatric oncology. Reference lists in the retrieved articles were examined for additional studies that fit the inclusion criteria, and relevant articles were included for review. In addition, web-based searches of specific journals were conducted. These included, but were not limited to: Qualitative Health Research, Psycho-Oncology, Journal of Psychosocial Oncology, Journal of Pediatric Psychology, Journal of Pediatric Health Care, Journal of Pediatric Oncology Nursing, Omega, Social Work in Health Care, and Journal of Palliative Medicine.
Results
Thirty-seven articles met eligibility criteria. From these, seven distinct themes emerged that have implications for pediatric palliative care. These include the role of culture in decision-making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children about death (truth telling), the meaning of pain and suffering, the meaning of death and dying, and location of end-of-life care.
Significance of results
The review of the literature provides insight into the influence of religion and how culture informs lifestyle and shapes the experiences of illness, pain, and end-of-life care. Recommendations for providing culturally sensitive end-of-life care are offered through the framework outlined in the Initiative for Pediatric Palliative Care Quality Improvement Project of 2002. Cultural traditions are dynamic, never static, and cannot be generalized to all families. Guidelines to aid in approaches to palliative care are provided, and providers are encouraged to define these important differences for each family under their care.
doi:10.1017/S1478951511001027
PMCID: PMC3437238  PMID: 22617619
Culture; Pediatric palliative care; Religion; Spirituality; Children; Ethnicity
8.  The experience of palliative patients and their families of a family meeting utilised as an instrument for spiritual and psychosocial care: A qualitative study 
BMC Palliative Care  2011;10:7.
Background
This study explores the experience of palliative patients and their family members of a family meeting model, utilised as an instrument for the provision of spiritual and psychosocial care. In doing so the study embraces a broad understanding of spirituality which may or may not include formal religious practice and a concept of psychosocial care that includes: social and emotional well-being, communication, self esteem, mental health and adaptation to illness. The meeting of spiritual and psychosocial needs is considered to be an important aspect of palliative care.
Methods
This qualitative study, philosophically underpinned by hermeneutic phenomenology, investigates the participatory experience of palliative care patients and their significant family members of such a family meeting. People registered with two large metropolitan palliative care services, who met selection criteria, were referred by medical staff. Twelve of the 66 referred took part in family meetings which also included significant others invited by the patient. A total of 36 family members participated. The number of participants of individual family meetings ranged from two to eleven. After the family meeting every participant was invited to take part in an individual in-depth interview about their experience of the meeting. Forty seven interviews were conducted. These were audio recorded and transcribed.
Results
Data analysis, utilising Ricoeur's theory of interpretation, revealed seven main themes: personal experience of the meeting, personal outcomes, observation of others' experience, observation of experience and outcomes for the family unit, meeting facilitation, how it could have been different and general applicability of the family meeting. Throughout these themes were numerous references to aspects of the web of relationships which describe the concept of spirituality as it is defined for the purpose of this study.
Conclusions
The findings indicate the potential of the type of family meeting reported for use in the spiritual and psychosocial care of people receiving palliative care and their families. However further research is needed to explore its application to more culturally diverse groups and its longer term impact on family members.
doi:10.1186/1472-684X-10-7
PMCID: PMC3073937  PMID: 21435259
9.  Memories of being injured and patients' care trajectory after physical trauma 
BMC Nursing  2008;7:8.
Background
The purpose of this study was to acquire a deeper understanding of patients' memories of being injured and the trajectory of care before, during and after their Intensive Care Unit (ICU) stay.
Methods
Interviews were conducted with eighteen informants who after physical trauma had been cared for in the ICU. The interviews were analyzed by using a phenomenological hermeneutical method.
Results
The memories of injury during the trajectory of care are illustrated in a figure in which the injured informants have memories from five scenes; the scene of the accident, emergency unit, ICU, nursing ward and of coming home. Twelve subthemes were abstracted and four themes emerged; a surrealistic world, an injured body, care, and gratitude for life. After the accident, a "surrealistic world" appeared along with bad memories of being in a floating existence where plans had to be changed. This world was unfamiliar, sometimes including delusional and fragmentary memories from the ICU, and it was experienced as uncontrollable. They felt connected to an "injured body", experiencing bad memories from the ICU of being injured, from the nursing ward of simply enduring and of being in a No Man's Land when coming home; their lives had become limited. At the same time they were "connected to care" with good memories of receiving attention from others at the scene of the accident, being taken cared of at the emergency unit and cared for in the ICU. This care made them realise that people are responsible for each other, and they felt comforted but also vulnerable. Finally, they experienced "gratitude for life". This included good memories of being loved together with support from their families at the ICU, wanting to win life back at the nursing ward and acceptance when returning home. The support from their families made them realise that they fit in just as they are.
Conclusion
When bad memories of a surrealistic world and of being injured are balanced by good ones of care and love with a gratitude for life, there are more possibilities to move on despite an uncertain future following the injury.
doi:10.1186/1472-6955-7-8
PMCID: PMC2443793  PMID: 18559089
10.  Human Relationships in Palliative Care of Cancer Patient: Lived Experiences of Iranian Nurses 
Materia Socio-Medica  2014;26(1):35-38.
Background:
cancer patients require palliative care. Aim: the purpose of this study was to explore the experiences of nurses, who provide palliative care for cancer patients, within the context of Iranian culture.
Methods:
we conducted a hermeneutic phenomenological study. Semi structured in-depth interviews with 10 nurses were audio taped and transcribed. The transcriptions were then analyzed by Van Manen’s method.
Results:
one of the most important themes that emerged was “human relationships”, which also contained the subthemes of “comprehensive acceptance” and “psychological support”.
Conclusions:
the results provide deep understanding of human relationships in palliative care of cancer patients in Iran.
doi:10.5455/msm.2014.26.35-38
PMCID: PMC3990400  PMID: 24757399
cancer; Iran; Nurse; Palliative care; Phenomenology
11.  Integrating palliative care in the surgical and trauma intensive care unit: A report from the Improving Palliative Care in the Intensive Care Unit (IPAL-ICU) Project Advisory Board and the Center to Advance Palliative Care 
Critical Care Medicine  2012;40(4):1199-1206.
Objective
Although successful models for palliative care delivery and quality improvement in the intensive care unit have been described, their applicability in surgical intensive care unit settings has not been fully addressed. We undertook to define specific challenges, strategies, and solutions for integration of palliative care in the surgical intensive care unit.
Data Sources
We searched the MEDLINE database from inception to May 2011 for all English language articles using the term “surgical palliative care” or the terms “surgical critical care,” “surgical ICU,” “surgeon,” “trauma” or “transplant,” and “palliative care” or “end-of- life care” and hand-searched our personal files for additional articles. Based on review of these articles and the experiences of our interdisciplinary expert Advisory Board, we prepared this report.
Data Extraction and Synthesis
We critically reviewed the existing literature on delivery of palliative care in the surgical intensive care unit setting focusing on challenges, strategies, models, and interventions to promote effective integration of palliative care for patients receiving surgical critical care and their families.
Conclusions
Characteristics of patients with surgical disease and practices, attitudes, and interactions of different disciplines on the surgical critical care team present distinctive issues for intensive care unit palliative care integration and improvement. Physicians, nurses, and other team members in surgery, critical care and palliative care (if available) should be engaged collaboratively to identify challenges and develop strategies. “Consultative,” “integrative,” and combined models can be used to improve intensive care unit palliative care, although optimal use of trigger criteria for palliative care consultation has not yet been demonstrated. Important components of an improvement effort include attention to efficient work systems and practical tools and to attitudinal factors and “culture” in the unit and institution. Approaches that emphasize delivery of palliative care together with surgical critical care hold promise to better integrate palliative care into the surgical intensive care unit.
doi:10.1097/CCM.0b013e31823bc8e7
PMCID: PMC3307874  PMID: 22080644
end-of-life care; ICU palliative care; surgeon attitude; surgical intensive care; surgical outcome; surgical palliative care
12.  End-of-life care decisions in the pediatric intensive care unit: roles professionals play 
Objective
Describe the roles and respective responsibilities of pediatric intensive care unit (PICU) health care professionals (HCPs) in end-of-life care decisions faced by PICU parents.
Design
Retrospective qualitative study
Setting
University based tertiary care children’s hospital
Participants
Eighteen parents of children who died in the PICU and 48 PICU HCPs (physicians, nurses, social workers, child-life specialists, chaplains, and case managers).
Interventions
In depth, semi-structured focus groups and one-on-one interviews designed to explore experiences in end-of-life care decision making.
Measurements and Main Results
We identified end-of-life care decisions that parents face based on descriptions by parents and HCPs. Participants described medical and non-medical decisions addressed toward the end of a child’s life. From the descriptions, we identified seven roles HCPs play in end-of-life care decisions. The family supporter addresses emotional, spiritual, environmental, relational and informational family needs in a nondirective way. The family advocate helps families articulate their views and needs to HCPs. The information giver provides parents with medical information, identifies decisions or describes available options, and clarifies parents’ understanding. The general care coordinator helps facilitate interactions among HCPs in the PICU, among HCPs from different subspecialty teams, and between HCPs and parents. The decision maker makes or directly influences the defined plan of action. The end-of-life care coordinator organizes and executes functions occurring directly before, during and after dying/death. The point person develops a unique trusting relationship with parents.
Conclusions
Our results describe a framework for HCPs’ roles in parental end-of-life care decision making in the PICU that includes directive, value-neutral and organizational roles. More research is needed to validate these roles. Actively ensuring attention to these roles during the decision-making process could improve parents’ experiences at the end of a child’s life.
doi:10.1097/PCC.0b013e31826e7408
PMCID: PMC3976222  PMID: 23249788
roles; qualitative research; pediatric intensive care unit; end-of-life care; communication; decision making
13.  The power of consoling presence - hospice nurses’ lived experience with spiritual and existential care for the dying 
BMC Nursing  2014;13:25.
Background
Being with dying people is an integral part of nursing, yet many nurses feel unprepared to accompany people through the process of dying, reporting a lack of skills in psychosocial and spiritual care, resulting in high levels of moral distress, grief and burnout. The aim of this study is to describe the meaning of hospice nurses’ lived experience with alleviating dying patients’ spiritual and existential suffering.
Methods
This is a qualitative study.
Hospice nurses were interviewed individually and asked to narrate about their experiences with giving spiritual and existential care to terminally ill hospice patients. Data analysis was conducted using phenomenological hermeneutical method.
Results
The key spiritual and existential care themes identified, were sensing existential and spiritual distress, tuning inn and opening up, sensing the atmosphere in the room, being moved and touched, and consoling through silence, conversation and religious consolation.
Conclusions
Consoling existential and spiritual distress is a deeply personal and relational practice. Nurses have a potential to alleviate existential and spiritual suffering through consoling presence. By connecting deeply with patients and their families, nurses have the possibility to affirm the patients’ strength and facilitate their courage to live a meaningful life and die a dignified death.
doi:10.1186/1472-6955-13-25
PMCID: PMC4160718  PMID: 25214816
Dying; Spiritual and existential care; Hospice nursing; Consolation; Phenomenological hermeneutical study
14.  Perspectives on care and communication involving incurably ill Turkish and Moroccan patients, relatives and professionals: a systematic literature review 
BMC Palliative Care  2012;11:17.
Background
Our aim was to obtain a clearer picture of the relevant care experiences and care perceptions of incurably ill Turkish and Moroccan patients, their relatives and professional care providers, as well as of communication and decision-making patterns at the end of life. The ultimate objective is to improve palliative care for Turkish and Moroccan immigrants in the Netherlands, by taking account of socio-cultural factors in the guidelines for palliative care.
Methods
A systematic literature review was undertaken. The data sources were seventeen national and international literature databases, four Dutch journals dedicated to palliative care and 37 websites of relevant national and international organizations. All the references found were checked to see whether they met the structured inclusion criteria. Inclusion was limited to publications dealing with primary empirical research on the relationship between socio-cultural factors and the health or care situation of Turkish or Moroccan patients with an oncological or incurable disease. The selection was made by first reading the titles and abstracts and subsequently the full texts. The process of deciding which studies to include was carried out by two reviewers independently. A generic appraisal instrument was applied to assess the methodological quality.
Results
Fifty-seven studies were found that reported findings for the countries of origin (mainly Turkey) and the immigrant host countries (mainly the Netherlands). The central themes were experiences and perceptions of family care, professional care, end-of-life care and communication. Family care is considered a duty, even when such care becomes a severe burden for the main female family caregiver in particular. Professional hospital care is preferred by many of the patients and relatives because they are looking for a cure and security. End-of-life care is strongly influenced by the continuing hope for recovery. Relatives are often quite influential in end-of-life decisions, such as the decision to withdraw or withhold treatments. The diagnosis, prognosis and end-of-life decisions are seldom discussed with the patient, and communication about pain and mental problems is often limited. Language barriers and the dominance of the family may exacerbate communication problems.
Conclusions
This review confirms the view that family members of patients with a Turkish or Moroccan background have a central role in care, communication and decision making at the end of life. This, in combination with their continuing hope for the patient’s recovery may inhibit open communication between patients, relatives and professionals as partners in palliative care. This implies that organizations and professionals involved in palliative care should take patients’ socio-cultural characteristics into account and incorporate cultural sensitivity into care standards and care practices.
doi:10.1186/1472-684X-11-17
PMCID: PMC3517329  PMID: 22985103
Palliative care; Communication; Immigrants; Ethnic minorities
15.  Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study 
PLoS Medicine  2012;9(2):e1001173.
In a qualitative study reported by Olav Lindqvist and colleagues, the range of nonpharmacological caregiving activities used in the last days of a patient's life are described.
Background
In late-stage palliative cancer care, relief of distress and optimized well-being become primary treatment goals. Great strides have been made in improving and researching pharmacological treatments for symptom relief; however, little systematic knowledge exists about the range of non-pharmacological caregiving activities (NPCAs) staff use in the last days of a patient's life.
Methods and Findings
Within a European Commission Seventh Framework Programme project to optimize research and clinical care in the last days of life for patients with cancer, OPCARE9, we used a free-listing technique to identify the variety of NPCAs performed in the last days of life. Palliative care staff at 16 units in nine countries listed in detail NPCAs they performed over several weeks. In total, 914 statements were analyzed in relation to (a) the character of the statement and (b) the recipient of the NPCA. A substantial portion of NPCAs addressed bodily care and contact with patients and family members, with refraining from bodily care also described as a purposeful caregiving activity. Several forms for communication were described; information and advice was at one end of a continuum, and communicating through nonverbal presence and bodily contact at the other. Rituals surrounding death and dying included not only spiritual/religious issues, but also more subtle existential, legal, and professional rituals. An unexpected and hitherto under-researched area of focus was on creating an aesthetic, safe, and pleasing environment, both at home and in institutional care settings.
Conclusions
Based on these data, we argue that palliative care in the last days of life is multifaceted, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. Providing for fundamental human needs close to death appears complex and sophisticated; it is necessary to better distinguish nuances in such caregiving to acknowledge, respect, and further develop end-of-life care.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
End-of-life care is a major public health issue, yet despite the inevitability of death, issues related to death and dying are often taboo, and, if mentioned, are often referred to as “palliative care.” There are detailed definitions of palliative care, but in essence, the purpose of palliative care is to relieve any suffering in patients who are dying from progressive illness and to provide the best possible quality of life for both the patient and his or her family. In order to achieve this aim, both pharmacological and non-pharmacological management is necessary, with the latter taking a central role. Recently, a European Commission Seventh Framework Programme project, OPCARE9, aimed to improve the care of dying patients in Europe and beyond by optimizing research and clinical care for patients with cancer in the last days of their life, especially regarding well-being and comfort as death becomes imminent.
Why Was This Study Done?
There is now a growing literature base in non-pharmacological management at the end of an individual's life, particularly in relation to psychological, ethical, and communication issues as well as family-focused and culturally appropriate care. Despite this progress, there is currently little systematic knowledge in how health workers use such non-pharmacological approaches in their efforts to maximize well-being and comfort in patients experiencing their very last days of life. Therefore, in order to advance knowledge in this important clinical area, in this study the researchers reviewed and identified the variety of non-pharmacological caregiving activities performed by different professionals in the last days and hours of life for patients with cancer (and their families) in palliative care settings in the countries that participated in OPCARE9.
What Did the Researchers Do and Find?
The researchers modified an anthropological approach to collect relevant information in participating European countries—Germany, Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the UK—and Argentina and New Zealand. Staff in palliative care settings generated a list of non-pharmacological caregiving activities after discussion about which interventions and activities they carried out with patients and families during the last days of life. This preliminary list of statements was added to if staff performed a new activity when in contact with patients or the patients' family during the last days of life. The researchers then used computer-assisted qualitative data analysis to code the statements.
Using this methodology, the researchers analyzed 914 statements of caregiving activities from 16 different facilities in nine countries. The greatest number of activities described some type of caregiving for an individual carried out through contact with his or her body, such as attending to diverse bodily needs (such as cleaning and moisturizing) while maintaining comfort and dignity. Listening, talking with, and understanding (particularly between professionals and the family) was the next most frequent activity, followed by creating an esthetical, safe, and pleasing environment for the dying person and his or her family, and necessary “backstage” activities, such as organizing paperwork or care plans. Other common activities included observing and assessing, which were often described as being carried out simultaneously with other interventions; just being present (described as increasingly important close to death); performing rituals surrounding death and dying (usually directed to families); guiding and facilitating (encompassing support in a compassionate manner); and finally, giving oral and written information and advice (usually to families).
What Do These Findings Mean?
These findings show that providing for fundamental human needs close to death is complex and sophisticated but ultimately integrated into a common theme of caregiving. This study also identifies a number of areas needing further investigation, such as enhancing the sensory and general environment for the patient and family. Finally, this study suggests that developing a greater level of detail, such as improved terminology for end-of-life care, would enhance appreciation of the nuances and complexity present in non-pharmacological care provision during the last days of life, with potential benefit for clinical practice, teaching, and research.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001173.
The OPCARE9 website details more information about this end-of-life care initiative
The World Health Organization website defines palliative care, and Wikipedia gives more information (note that Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
NHS Choices also provides information about end-of-life care
doi:10.1371/journal.pmed.1001173
PMCID: PMC3279347  PMID: 22347815
16.  Nurses’ and care workers’ experiences of spiritual needs in residents with dementia in nursing homes: a qualitative study 
BMC Nursing  2014;13:12.
Background
The aim of the study was to investigate nurses’ and care workers’ experiences of spiritual needs among residents with dementia in nursing homes. Nurses claim to practice holistic nursing. Nevertheless, there is little knowledge about how to recognise spiritual needs in residents with dementia.
Methods
The study was conducted using a qualitative method with an exploratory design. Eight focus- group interviews in four Norwegian nursing homes were performed from June 2011 – Jan 2012. Using open-ended research questions, a total of 31 participants were asked to share their understanding and experiences regarding residents’ spiritual needs. The interviews were analysed using a phenomenological – hermeneutical method.
Results
The nurses’ and care workers’ experiences of residents’ spiritual needs were related to three main themes; i) The need for serenity and inner peace, described as “contemplative and restful moments” and “calmness due to familiarity”, ii) The need for confirmation, described as “love and proximity” and iii) The need to express faith and beliefs, described as “participate in worship and prayers” and “approaching death”.
The comprehensive analyses revealed that the nurses believe the residents’ spiritual needs were linked to the residents’ previous sources of finding meaning, in relation to inter-personal, intra-personal and trans-personal dimensions in residents’ lives.
Conclusions
Nurses' and care workers’ experiences of spiritual needs in people with dementia are very similar to the findings for the general population regardless of the severity of the dementia. The study’s relevance to clinical practice indicates the importance of developing more knowledge about how people with dementia in nursing homes express spiritual needs and how to observe and interpret such needs.
doi:10.1186/1472-6955-13-12
PMCID: PMC4011774  PMID: 24731548
Spiritual needs; Dementia; Nursing home; Phenomenological hermeneutics; Nursing care
17.  Palliative care in urgent need of recognition and development in general practice: the example of Germany 
BMC Family Practice  2010;11:66.
Background
Specialist palliative care is being increasingly recognised and developed to improve end-of-life care in many developed countries. However, only a small proportion of the total number of patients with incurable, progressive diseases actually has direct contact with specialist palliative care practitioners. Using the German situation as an example, the main purpose of this paper is to argue that the emphasis on specialist palliative care services without a similar encouragement of primary palliative care will deliver a constrained service.
Discussion
For the vast majority of people with incurable, progressive diseases, good palliative care delivered by General Practitioners and community nurses, with access to specialist support when needed, is the optimal response. In Germany, specialist palliative care in the community was established in the 2007 health care reforms. However actual and potential delivery of palliative care by general practitioners and community based nurses has been sorely neglected. The time-consuming care of palliative patients and their families is currently far from accurately reflected in German, indeed most European primary care payment systems. However, it is not just a question of adequate financial compensation but also of the recognition of the fundamental value of this intense form of holistic family medicine.
Summary
It is imperative palliative care carried out by community nurses and general practitioners is better recognised by health professionals, health insurers, government and the scientific community as a central part of the delivery of health care for people in the last phase of life. Health systems should be arranged so that this critical role of general practice and primary care is intentionally fostered. Palliative care carried out by generalists needs an identity at an academic and practical level, developing in concert with specialist palliative care.
doi:10.1186/1471-2296-11-66
PMCID: PMC2945968  PMID: 20843334
18.  Associations with the Japanese Population's Preferences for the Place of End-of-Life Care and Their Need for Receiving Health Care Services 
Journal of Palliative Medicine  2012;15(10):1106-1112.
Abstract
Purpose
The aims of this study were to identify the associations with the Japanese population's preferences for the place of end-of-life care and their need for receiving health care services.
Methods
A secondary analysis of a cross-sectional nationwide survey was conducted for 2000 randomly selected Japanese people aged 40–79 years.
Results
A total of 1042 people (55%) responded. Regarding preferred place of care, we set the place within the choices of “Home” (preferred by 44% of respondents), “Acute Hospital” (15%), “Palliative Care Unit” (19%), “Public Nursing Home” (10%), and “Private Nursing Home” (2%). Multinomial logistic regression analysis revealed that the people who preferred “Acute Hospital” tended to have the following need compared to those who preferred “Home,” “Palliative Care Unit,” or “Nursing Home”: higher need for receiving end-of-life care not from its experienced professionals but from the same staff; higher need for using health care services in highly supported environment such as the need for being near health care staff whenever and for receiving treatment possibly until the end; and higher need for consulting nurses whenever. They had lower need for using home care services and daycare services and also lower need for instructing families about how to use insurance/public health services.
Conclusions
The present findings may help to develop an effective end-of-life care system in Japan considering Japanese people's need for health care services. Also, the results of this study may underscore the importance of education on receiving home care services especially for the people who presently prefer the hospital for end-of-life care.
doi:10.1089/jpm.2012.0034
PMCID: PMC3438814  PMID: 22788951
19.  Being altruistically egoistic—Nursing aides’ experiences of caring for older persons with mental disorders 
Older persons with mental disorders, excluding dementia disorders, constitute a vulnerable group of people. With the future international increase in the older population, mental disorders will increase as well, thus entailing new challenges for their caregivers. These older persons often remain in their own homes, and in Sweden they are cared for by nursing aides. With little previous research, an increased workload and facing new strenuous situations, it is important to make use of the knowledge the nursing aides possess and to deepen the understanding of their experiences. The study aimed at illuminating the meaning of caring for older persons with mental disorders as experienced by nursing aides in the municipal home help service. Interviews with nine female nursing aides were performed and analysed with a phenomenological hermeneutical research method inspired by the philosophy of Paul Ricoeur. Being altruistically egoistic emerged as a main theme in the nursing aides’ narratives. The nursing aides’ experiences could be interpreted as a movement between being altruistic and egoistic. The findings revealed a continuous distancing by the nursing aides and their struggle to redress the balance between their altruistic and egoistic actions. Caring for these older persons constitutes a complex situation where distancing functions as a recourse to prioritize oneself and to diminish the value of caring. The study suggests that an increased knowledge base on older persons with mental disorders, followed by continuous supervision, is necessary for the nursing aides to improve the quality of the care given.
doi:10.3402/qhw.v6i4.7530
PMCID: PMC3193826  PMID: 22007261
Aged; care of older people; mental disorders; municipal care of the old; nursing aides; phenomenological hermeneutics
20.  The role and significance of nurses in managing transitions to palliative care: a qualitative study 
BMJ Open  2014;4(9):e006026.
Objectives
Nurses are generally present, and often influential, in supporting patient and family acceptance of medical futility and in assisting doctors in negotiating referral to palliative care. Yet the specificities of the nursing role and how nurses may contribute to timely and effective referrals is not well understood. This study aimed to systematically explore hospital-based nurses’ accounts of the transition to palliative care, and the potential role of nurses in facilitating more effective palliative care transitions.
Design
Qualitative study using semistructured interviews.
Setting
Two health services with public as well as private clinical environments in a major metropolitan area of Australia.
Participants
Hospital-based nurses (n=20) who regularly work with patients at the point of referral and in managing transitions to palliative care.
Results
Four significant themes emerged from thematic analysis. These include: (1) professional dynamics and the roles played by nurses in initiating the transition to palliative care; (2) the value of nurses’ informal interactions in timely and effective transitions; (3) the emerging challenge of managing task-oriented nursing versus intense emotional nursing work at the point of medical futility and (4) the emotional burden experienced by nurses within this clinical context. Nurses self-reported occupying critical albeit complex roles in the management of medical futility and the transition to palliative care. They reported experiencing significant emotional burden in balancing interpersonal and interprofessional relationships during this time.
Conclusions
The results suggest that nurses may be utilised in a more formalised and systematic fashion in the context of managing medical futility and the need to topicalise the transition, with the focus shifted away from medical referrals towards more team-based and patient-centred timely transitions. Further research focused on the experiences of doctors, allied health professionals, patients and families is required to provide a broader interdisciplinary understanding of futility and contributions to the negotiation of palliative care.
doi:10.1136/bmjopen-2014-006026
PMCID: PMC4179576  PMID: 25270859
QUALITATIVE RESEARCH; PALLIATIVE CARE
21.  Practical knowledge of experienced nurses in critical care: a qualitative study of their narratives 
BMC Medical Education  2014;14:173.
Background
Scholars of nursing practices have claimed practical knowledge is source of knowledge in its own right, nevertheless we know little about this knowledge associated with day-to-day practice. The purpose of this study is to describe knowledge that the more experienced nurses the in ICU make use of and discover the components of care it includes. Understanding this knowledge can contribute to improving the working practices of nurses with less experience.
Methods
We used a phenomenologic and hermeneutic approach to conduct a qualitative study. Open in-depth dialogue interviews were conducted with 13 experienced ICU nurses selected by intentional sampling. Data was compiled on significant stories of their practice. The data analysis enabled units of meaning to be categorised and grouped into topics regarding everyday practical knowledge.
Results
Knowledge related to everyday practice was evaluated and grouped into seven topics corresponding to how the ICU nurses understand their patient care: 1) Connecting with, calming and situating patients who cannot communicate; 2) Situating and providing relief to patients in transitions of mechanical respiration and non-invasive ventilation; 3) Providing reassurance and guaranteeing the safety of immobilised patients; 4) The “connection” with patients in comas; 5) Taking care of the body; 6) The transition from saving life to palliative care; and 7) How to protect and defend the patient from errors. The components of caretaking that guarantee success include: the calm, care and affection with which they do things; the time devoted to understanding, situating and comforting patients and families; and the commitment they take on with new staff and doctors for the benefit of the patient.
Conclusions
These results show that stories of experiences describe a contextual practical knowledge that the more experienced nurses develop as a natural and spontaneous response. In critical patients the application of everyday practical knowledge greatly influences their well-being. In those cases in which the nurses describe how they have protected the patients from error, this practical knowledge can mean the difference between life and death. The study highlights the need to manage practical knowledge and undertake further research. The study is useful in keeping clinical practice up-to-date.
doi:10.1186/1472-6920-14-173
PMCID: PMC4236508  PMID: 25132455
Practical knowledge; Practical wisdom; Nursing; Critical care; Clinical experience
22.  Lived experiences of pediatric oncology nurses in Iran 
Background:
Caring is a valuable task. The staff in any profession that involves patients’ fear, anxiety, pain, and suffering may experience similar feelings. As a professional group, oncology nurses deal with patients and their relatives and caregivers under very stressful conditions. They encounter pain, suffering, and death as a part of their daily life. A number of studies have evaluated the experiences of pediatric oncology nurses in other countries. Therefore, conducting a survey about the experiences of Iranian nurses of caring for children with cancer can reveal their demands, stress, and limitations.
Materials and Methods:
In a qualitative research, in-depth, unstructured individual interviews with open-ended questions were conducted to evaluate the experiences of pediatric oncology nurses in a hospital in a metropolitan city of Iran. The subjects all consented to participate and had at least one year of working experience in the ward. Content analysis was performed to analyze the data.
Results:
The lived experiences of pediatric oncology nurses were categorized in five main themes. These themes included attachment, supportive care, trying to repress feelings, feeling of helplessness, and the need to be supported.
Conclusions:
According to these results, nurses who provide care for children with cancer require support. This research also highlighted the roles, limitations, and needs of nurses in pediatric oncology wards.
PMCID: PMC3877455  PMID: 24403935
Iran; lived experiences; pediatric oncology nursing qualitative research
23.  Improving palliative care outcomes for Aboriginal Australians: service providers’ perspectives 
BMC Palliative Care  2013;12:26.
Background
Aboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers’ experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families.
Methods
In-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient and community settings in Western Australia. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers with QSR NVivo 10 software used to help manage data. Data analysis was informed by multiple theoretical standpoints, including the social ecological model, critical cultural theories and the ‘cultural security’ framework. Thematic analysis was carried out that identified patterns within data.
Results
Fifteen palliative care providers were interviewed. Overall they reported lack of understanding of Aboriginal culture and being uncertain of the needs and priorities of Aboriginal people during end-of-life care. According to several participants, very few Aboriginal people had an understanding of palliative care. Managing issues such as anger, denial, the need for non-medical support due to socioeconomic disadvantage, and dealing with crises and conflicts over funeral arrangements were reported as some of the tensions between Aboriginal patients and families and the service providers.
Conclusion
Early referral to palliative care is important in demonstrating and maintaining a caring therapeutic relationship. Paramount to meeting the needs for Aboriginal patients was access to appropriate information and logistical, psychological and emotional support. These were often seen as essential but additional to standard palliative care services. The broader context of Aboriginal history and historical distrust of mainstream services was seen to impinge on Aboriginal people’s willingness and ability to accept care and support from these services. This context needs to be understood and acknowledged at the system level. More cultural safety training was requested by care providers but it was not seen as replacing the need for an Aboriginal worker in the palliative care team.
doi:10.1186/1472-684X-12-26
PMCID: PMC3729490  PMID: 23875957
Palliative care; End of life care; Aboriginal; Indigenous; Cultural safety; Australia
24.  How Death Anxiety Impacts Nurses’ Caring for Patients at the End of Life: A Review of Literature 
The Open Nursing Journal  2013;7:14-21.
Nurses are frequently exposed to dying patients and death in the course of their work. This experience makes individuals conscious of their own mortality, often giving rise to anxiety and unease. Nurses who have a strong anxiety about death may be less comfortable providing nursing care for patients at the end of their life. This paper explores the literature on death anxiety and nurses’ attitudes to determine whether fear of death impacts on nurses’ caring for dying patients. Fifteen quantitative studies published between 1990 and 2012 exploring nurses’ own attitudes towards death were critically reviewed. Three key themes identified were: i). nurses’ level of death anxiety; ii). death anxiety and attitudes towards caring for the dying, and iii). death education was necessary for such emotional work. Based on quantitative surveys using valid instruments, results suggested that the level of death anxiety of nurses working in hospitals in general, oncology, renal, hospice care or in community services was not high. Some studies showed an inverse association between nurses’ attitude towards death and their attitude towards caring for dying patients. Younger nurses consistently reported stronger fear of death and more negative attitudes towards end-of-life patient care. Nurses need to be aware of their own beliefs. Studies from several countries showed that a worksite death education program could reduce death anxiety. This offers potential for improving nurses’ caring for patients at the end of their life.
doi:10.2174/1874434601307010014
PMCID: PMC3565229  PMID: 23400515
Attitudes; death anxiety; end of life care; spirituality; thanatophobia.
25.  Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies 
PLoS Medicine  2012;9(10):e1001331.
A systematic review of qualitative studies conducted by Frances Bunn and colleagues identifies and describes the experiences of patients and caregivers on receiving and adapting to a diagnosis of dementia.
Background
Early diagnosis and intervention for people with dementia is increasingly considered a priority, but practitioners are concerned with the effects of earlier diagnosis and interventions on patients and caregivers. This systematic review evaluates the qualitative evidence about how people accommodate and adapt to the diagnosis of dementia and its immediate consequences, to guide practice.
Methods and Findings
We systematically reviewed qualitative studies exploring experiences of community-dwelling individuals with dementia, and their carers, around diagnosis and the transition to becoming a person with dementia. We searched PubMed, PsychINFO, Embase, CINAHL, and the British Nursing Index (all searched in May 2010 with no date restrictions; PubMed search updated in February 2012), checked reference lists, and undertook citation searches in PubMed and Google Scholar (ongoing to September 2011). We used thematic synthesis to identify key themes, commonalities, barriers to earlier diagnosis, and support identified as helpful. We identified 126 papers reporting 102 studies including a total of 3,095 participants. Three overarching themes emerged from our analysis: (1) pathways through diagnosis, including its impact on identity, roles, and relationships; (2) resolving conflicts to accommodate a diagnosis, including the acceptability of support, focusing on the present or the future, and the use or avoidance of knowledge; and (3) strategies and support to minimise the impact of dementia. Consistent barriers to diagnosis include stigma, normalisation of symptoms, and lack of knowledge. Studies report a lack of specialist support particularly post-diagnosis.
Conclusions
There is an extensive body of qualitative literature on the experiences of community-dwelling individuals with dementia on receiving and adapting to a diagnosis of dementia. We present a thematic analysis that could be useful to professionals working with people with dementia. We suggest that research emphasis should shift towards the development and evaluation of interventions, particularly those providing support after diagnosis.
Please see later in the article for the Editors' Summary.
Editors' Summary
Background
Dementia is a decline in mental ability severe enough to interfere with daily life. Alzheimer disease is the most common type of dementia. People with dementia usually have problems with two or more cognitive functions—thinking, language, memory, understanding, and judgment. Dementia is rare before the age of 65, but about a quarter of people over 85 have dementia. Because more people live longer these days, the number of patients with dementia is increasing. It is estimated that today between 40 and 50 million people live with dementia worldwide. By 2050, this number is expected to triple.
One way to study what dementia means to patients and their carers (most often spouses or other family members) is through qualitative research. Qualitative research aims to develop an in-depth understanding of individuals' experiences and behavior, as well as the reasons for their feelings and actions. In qualitative studies, researchers interview patients, their families, and doctors. When the studies are published, they usually contain direct quotations from interviews as well as summaries by the scientists who designed the interviews and analyzed the responses.
Why Was This Study Done?
This study was done to better understand the experiences and attitudes of patients and their carers surrounding dementia diagnosis. It focused on patients who lived and were cared for within the community (as opposed to people living in senior care facilities or other institutions). Most cases of dementia are progressive, meaning symptoms get worse over time. Diagnosis often happens at an advanced stage of the disease, and some patients never receive a formal diagnosis. This could have many possible reasons, including unawareness or denial of symptoms by patients and people close to them. The study was also trying to understand barriers to early diagnosis and what type of support is useful for newly diagnosed patients and carers.
What Did the Researchers Do and Find?
The researchers conducted a systematic search for published qualitative research studies that reported on the experience, beliefs, feelings, and attitudes surrounding dementia diagnosis. They identified and reviewed 102 such studies. Among the quotations and summaries of the individual studies, they looked for prominent and recurring themes. They also compared and contrasted the respective experiences of patients and carers.
Overall, they found that the complexity and variety of responses to a diagnosis of dementia means that making the diagnosis and conveying it to patients and carers is challenging. Negative connotations associated with dementia, inconsistent symptoms, and not knowing enough about the signs and symptoms were commonly reported barriers to early dementia diagnosis. It was often the carer who initiated the search for help from a doctor, and among patients, willingness and readiness to receive a diagnosis varied. Being told one had dementia had a big impact on a patient's identity and often caused feelings of loss, anger, fear, and frustration. Spouses had to adjust to increasingly unequal relationships and the transition to a role as carer. The strain associated with this often caused health problems in the carers as well. On the other hand, studies examining the experience of couples often reported that they found ways to continue working together as a team.
Adjusting to a dementia diagnosis is a complex process. Initially, most patients and carers experienced conflicts, for example, between autonomy and safety, between recognizing the need for help but reluctance to accept it, or between living in the present and dealing with anxiety about and preparing for the future. As these were resolved and as the disease progressed, the attitudes of patients and carers towards dementia often became more balanced and accepting. Many patients and their families adopted strategies to cope with the impact of dementia on their lives in order to manage the disease and maintain some sort of normal life. These included practical strategies involving reminders, social strategies such as relying on family support, and emotional strategies such as using humor. At some point many patients and carers reported that they were able to adopt positive mindsets and incorporate dementia in their lives.
The studies also pointed to an urgent need for support from outside the family, both right after diagnosis and subsequently. General practitioners and family physicians have important roles in helping patients and carers to get access to information, social and psychological support, and community care. The need for information was reported to be ongoing and varied, and meeting it required a variety of sources and formats. Key needs for patients and carers mentioned in the studies include information on financial aids and entitlements early on, and continued access to supportive professionals and specialists.
What Do These Findings Mean?
Qualitative studies to date on how patients and carers respond to a diagnosis of dementia provide a fairly detailed picture of their experiences. The summary provided here should help professionals to understand better the challenges patients and carers face around the time of diagnosis as well as their immediate and evolving needs. The results also suggest that future research should focus on the development and evaluation of ways to meet those needs.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001331.
Wikipedia has pages on dementia and qualitative research (note that Wikipedia is a free online encyclopedia that anyone can edit)
Alzheimer Europe, an umbrella organization of 34 Alzheimer associations from 30 countries across Europe, has a page on the different approaches to research
The UK Department of Health has pages on dementia, including guidelines for carers of people with dementia
MedlinePlus also has information about dementia
doi:10.1371/journal.pmed.1001331
PMCID: PMC3484131  PMID: 23118618

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