Quality of life is an ill-defined term, as it means different things to different people. Quality of life has been well researched, especially with respect to people with cancer, but not necessarily from the perspective of the patient, and also, not in Third World, resource-poor countries. The objective of this study was to explore quality of life from the perspective of palliative care patients managed at a palliative care clinic serving a resource-poor community in Tshwane, South Africa.

An exploratory, qualitative phenomenological study was conducted. The target population for this study was all patients managed at a palliative care clinic serving a resource-poor community in Tshwane. Self-report data were gathered by means of in-depth interviews. The data were analyzed using a template analysis style as well as content analysis using open coding. Data analysis was done concurrently with data gathering. Data saturation was reached after 10 interviews (n = 10).

Three themes arose from the data: factors that had a positive influence on quality of life, factors that had a negative influence on quality of life, and experience of quality of life. Work played the most important role in quality of life whereas only one participant linked symptom control with quality of life. Experiencing symptoms, rejection, and stigmatization had a negative influence on quality of life. Friends and religion played a significant role and added to quality of life.

Life was a daily struggle for survival. Poverty was so overwhelming that quality of life was primarily measured in terms of the ability to buy food and other basic commodities.

The primary end points of this analysis were to explore 1) the practices of prognostic disclosure for patients with cancer and their family members in Japan, 2) the person who decided on the degree of prognosis communication, and 3) family evaluations of the type of prognostic disclosure.

Semistructured face-to-face interviews were conducted with 60 bereaved family members of patients with cancer who were admitted to palliative care units in Japan.

Twenty-five percent of patients and 75% of family members were informed of the predicted survival time of the patient. Thirty-eight percent of family members answered that they themselves decided on to what degree to communicate the prognosis to patients and 83% of them chose not to disclose to patients their prognosis or incurability. In the overall evaluation of prognosis communication, 30% of the participants said that they regretted or felt doubtful about the degree of prognostic disclosure to patients, whereas 37% said that they were satisfied with the degree of prognostic disclosure and 5% said that they had made a compromise. Both in the “prognostic disclosure” group and the “no disclosure” group, there were family members who said that they regretted or felt doubtful (27% and 31%, respectively) and family members who said that they were satisfied with the degree of disclosure (27% and 44%, respectively).

In conclusion, family members assume the predominant role as the decision-making source regarding prognosis disclosure to patients, and they often even prevent prognostic disclosure to patients. From the perspective of family members, any one type of disclosure is not necessarily the most acceptable choice. Future surveys should explore the reasons why family members agree or disagree with prognostic disclosures to patients and factors correlated with family evaluations.

Multidisciplinary staff who work with end-of-life, pre-transplant patients with cystic fibrosis (CF) have to juggle two seemingly opposing care approaches; active care to maintain their patients’ health and condition in anticipation of a transplant, and sensitive palliative care that takes their end-of-life wishes into consideration should they not receive a transplant. Little is known about the psychological impact on staff working within this care dichotomy. The aim of this study is to explore staff's experiences and understand more about the psychological impact of this work on them professionally and personally, and how this affects their ability to provide appropriate care for their patients.

A qualitative explorative research design was used. Ten semistructured interviews with multidisciplinary staff working in cystic fibrosis centers and units across the United Kingdom were analyzed using interpretative phenomenological analysis (IPA).

Two superordinate themes emerged from the analysis: factors contributing to the “juggle” of active and palliative care, and extent of emotional impact on staff.

The study indicates that there is an emotional impact on staff working with patients with CF at end-of-life, pre-transplant stages. Specifically, it reveals the extent of the unpredictability that staff work with, and the range of emotions that staff experience, including uncertainty about professional identity and anxiety about working practices. The depth and intimacy of professional–patient relationships is highlighted, particularly for staff in close contact with and similar in age to their patients. Additionally, the strength of staff's commitment and desire to care for patients within broader humanistic terms that mesh with their own personal values is brought to light. Despite the difficulties with their work, the majority of staff adopted numerous coping strategies to manage their emotions, many of which emphasized the link between their professional and personal values in undertaking their roles.

In cancer care, the burden of psycho-emotional elements involved on the patient–healthcare provider relationship cannot be ignored. The aim of this work is to have an impact on the level of burnout experienced by European Institute of Oncology (IEO) gynecologic oncology nurses (N = 14) and on quality of multidisciplinary team work.

We designed a 12 session multimodal training program consisting of a 1.5 hour theoretical lesson on a specific issue related to gynecologic cancer patient care, 20 minute projection of a short film, and 1.75 hours of role-playing exercises and experiential exchanges. The Link Burnout Questionnaire (Santinello, 2007) was administered before and after the completion of the intervention. We also monitored the number of patients referred to the Psycho-oncology Service as an indicator of the efficacy of the multidisciplinary approach.

After the completion of the program, the general level of burnout significantly diminished (p = 0.02); in particular, a significant decrease was observed in the “personal inefficacy” subscale (p = 0.01). The number of patients referred to the Psycho-oncology Service increased by 50%.

Nurses are in the first line of those seeing patients through the entire course of the disease. For this reason, they are at a particularly high risk of developing work-related distress. Structured training programs can be a valid answer to work-related distress, and feeling part of a multidisciplinary team helps in providing patients with better psychosocial care.

The purpose of this study was to evaluate levels of spiritual well-being over time in populations with advanced congestive heart failure (CHF) or chronic obstructive lung disease (COPD).

In a prospective, longitudinal study, patients with CHF or COPD (each n = 103) were interviewed at baseline and every 3 months for up to 30 months. At each interview, patients completed: the basic faith subscale of the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp) questionnaire, the Memorial Symptom Assessment Scale (MSAS), the Rand Mental Health Inventory (MHI), the Multidimensional Index of Life Quality (MILQ), the Sickness Impact Profile (SIP), and the Short Portable Mental Health Questionnaire (SPMSQ).

The mean age was 65 years, 59% were male, 78% were Caucasian, 50% were married, 29% lived alone, and there was no significant cognitive impairment. Baseline median FACIT-Sp score was 10.0 on a scale of 0–16. FACIT-Sp scores did not change over time and multivariate longitudinal analysis revealed higher scores for black patients and lower scores for those with more symptom distress on the MSAS-Global Distress Index (GDI) (both p = 0.02). On a separate multivariate longitudinal analysis, MILQ scores were positively associated with the FACIT-Sp and the MHI, and negatively associated with the MSAS-GDI and the SIP (all p-values < 0.001).

In advanced CHF and COPD, spiritual well-being remains stable over time, it varies by race and symptom distress, and contributes to quality of life, in combination with symptom distress, mental health and physical functioning.

Little is known about relationships between patient spiritual well-being and caregiver outcomes for those with advanced cancer. We were interested in examining the relationship between patient physical quality of life (QOL) and caregiver depression and to also evaluate whether patient spiritual well-being (SWB) played a mediating role in this relationship.

This is a prospective longitudinal study that was conducted in the outpatient clinics at a university-affiliated comprehensive cancer center. 226 patients with Stage III or IV cancer (lung, GI, GYN) and their primary caregivers were interviewed upon enrollment into the study and three months later. Measures of spirituality, health-related quality of life, and physical functioning were included in the interviews.

Key findings were that the relationship between patient physical QOL and caregiver depression was inverse and moderate (β = −0.24, p = 0.004) and that patient SWB (meaning/peace) played a significant (p = 0.02) and medium-size role (β = −0.31) in mediating the relationship between patient physical QOL and caregiver depression. The nature of these relationships was stable over time.

Patients' spirituality is central to their coping and adjusting to cancer. It is this aspect of patient overall quality of life that mediates the relationship to caregiver well-being. The most potent intervention for caregiver depression may be attending to patient spiritual distress.

Dignity therapy (DT) is a short-term psychotherapy developed for patients living with a life-limiting illness. Our aim was to determine the influence of DT on symptoms of depression and anxiety in people with a life-threatening disease with high level of distress, referred to an inpatient palliative care unit.

This was an open-label randomized controlled trial. Sixty terminally ill patients were randomly assigned to one of two groups: intervention group (DT+ standard palliative care [SPC]) or control group (SPC alone). The main outcomes were symptoms of depression and anxiety, measured with the Hospital Anxiety and Depression Scale, assessed at baseline, day 4, day 15, and day 30 of follow-up.

Of the 60 participants, 29 were randomized to DT and 31 to SPC. Baseline characteristics were similar between the two groups. DT was associated with a significant decrease in depressive symptoms at day 4 and day 15 (mean = −4.46, 95% CI, −6.91–2.02, p = 0.001; mean= −3.96, 95% CI, −7.33 to −0.61; p = 0.022, respectively), but not at day 30 (mean = −3.33, 95% CI, −7.32–0.65, p = 0.097). DT was also associated with a significant decrease in anxiety symptoms at each follow-up (mean= −3.96, 95% CI, −6.66 to −1.25, p = 0.005; mean= −6.19, 95% CI, −10.49 to −1.88, p = 0.006; mean = −5.07, 95% CI, −10.22 to −0.09, p = 0.054, respectively).

DT appears to have a short-term beneficial effect on the depression and anxiety symptoms that often accompany patients at the end of their lives. Future research with larger samples compared with other treatments is needed to better understand the potential benefits of this psychotherapy.

The objectives of this article are, first, to document a unique process of research knowledge translation (KT), which the authors describe as the creation of “ethical safe space,” and, second, to document the narratives of forum participants and describe their interaction in a dialogue about vulnerability, the authority of physicians, and the perspective of people with disabilities on the policy.

Narrative data from qualitative interviews with individual key informants and focus groups were used to identify speakers with specific expertise on policy, disability perspectives, and bioethical issues, who were invited to participate in the Forum on Ethical Safe Space. The planning workgroup adopted a model for enabling representative participation in the public forum designed to reduce the impact of physical, sensory, financial, language, and professional status barriers. Using the transcripts and keynote speakers' printed texts, primary themes and patterns of interaction were identified reflecting the alternative perspectives. Through the development of a workshop on ethical, legal, and disability-related implications of professional policy guidelines developed by the College of Physicians and Surgeons of Manitoba, we provided a qualitative analysis of the discourse involving experts and disability community members supporting alternative positions on the impact of the policy statement, and discuss ethical, legal, and disability rights issues identified in the public debate.

Contested policy and ethical frameworks for making decisions about withdrawing and withholding life supporting treatment may influence both the perspectives of palliative care providers and patients referred to palliative care facilities. An innovative model for KT using a public forum that enabled stakeholders with conflicting perspectives to engage with ethical and professional policy issues asserting the physician's authority in contested decisions involving withdrawing or withholding life-supporting treatment, was a successful way to engage stakeholders supporting alternative positions on the impact of the policy statement and to discuss ethical, legal, and disability rights issues identified in the public debate.

Discussion during the forum revealed several benefits of creating ethical safe space. This model of workshop allows space for participation of stakeholders, who might not otherwise be able to interact in the same forum, to articulate their perspectives and debate with other presenters and audience members. Participants at the forum spoke of the creation of ethical safe space as a starting point for more dialogue on the issues raised by the policy statement. The forum was, therefore, seen as a potential starting point for building conversation that would facilitate revising the policy with broader consultation on its legal and ethical validity.

The purpose of this study was to determine the relationships among advance directive status, principal diagnoses, and the discharge outcomes in community-dwelling, critically ill older adults.

Using administrative and clinical data (n = 1673), multinomial logit regressions were used to examine the relationships among advance directive status, principal diagnoses, and discharge outcomes (in-hospital deaths, hospice discharges, and transition to institutions).

In the overall sample, the adjusted probability of in-hospital deaths with advance directives (12%) was lower than that without advance directives (17%; odds ratio [OR] = 0.56; p = 0.007) and the adjusted probability of hospice discharges with advance directives (11%) was higher than that without advance directives (7%; OR = 1.96; p = 0.03). Subgroup analysis showed that the magnitude of the abovementioned changes was aggregated when their principal diagnoses were a group of diseases with more difficult prognostication (circulatory and respiratory diseases) and more potential for reversibility (infectious diseases). By contrast, the magnitude of the abovementioned findings was diminished with other principal diagnoses. On the other hand, the presence of advance directives did not make a contribution to transition from communities to institutions.

Significantly fewer in-hospital deaths in addition to higher hospice discharges were observed with any advance directives in community-dwelling, critically ill older adults. The magnitude of these findings was aggregated when their principal diagnoses were a group of diseases with more difficult prognostication (circulatory and respiratory diseases) and more potential for reversibility (infectious diseases). By contrast, the magnitude of these findings was diminished with other principal diagnoses.

The Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being (FACIT-Sp) scale is a valid and reliable instrument to provide an inclusive measure of spirituality in research and clinical practice. The aim of this study was to translate and investigate the reliability and validity of the Persian version of the FACIT-Sp.

The 12 item spiritual well-being subscale of the FACIT-Sp Version 4 was translated into the Persian language, Farsi, using the FACIT translation methodology. The questionnaire was administered to a diverse sample of 153 patients in treatment for cancer. Internal consistency was assessed by Cronbach's α coefficient, confirmatory factor analysis (CFA) was applied to assess construct validity, and regression analysis was used to assess the predictor role of the FACIT-Sp in health-related quality of life (HRQOL).

Cronbach's α reliability coefficient for the FACIT-Sp subscales ranged from 0.72 to 0.90. The CFA generally replicated the original conceptualization of the three subscales of the FACIT-Sp12 (Peace, Meaning, and Faith). All three subscales significant predicted HRQOL.

The Persian version of the FACIT-Sp scale is a reliable and valid tool for the clinical assessment of, and research into, the spiritual well-being of Muslim Iranian and Farsi-speaking patients in other regions of the world who are in treatment for cancer.

Diagnosing depressive disorders in palliative care is challenging because of the overlap between some depressive symptoms and cancer-related symptoms, such as loss of appetite and fatigue. In order to improve future assessment of depression in palliative care, depressive symptoms experienced by patients receiving pharmacological treatment for depression were assessed and compared to the American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders, 4th ed. (DSM-IV) criteria for major depressive disorder.

Thirty Norwegian (n = 20) and Austrian (n = 10) patients with advanced cancer were included. Semistructured interviews on symptom experiences were conducted and transcribed verbatim. By the phenomenographic method, patients' symptom experiences were extracted and sorted by headings, first individually and then across patients. The patients subsequently rated 24 symptoms numerically including the DSM-IV depression criteria.

Lowered mood and a diminished motivational drive were prominent and reflected the two main DSM-IV symptom criteria. A relentless focus on their actual situation, restlessness, disrupted sleep, feelings of worthlessness, feelings of guilt, and thoughts of death as a solution were variably experienced. Appetite and weight changes, fatigue and psychomotor retardation were indistinguishable from cancer symptoms. All these symptoms reflected DSM-IV symptom criteria. Some major symptoms occurred that are not present in the DSM-IV symptom criteria: despair, anxiety, and social withdrawal. The numerical ratings of symptoms were mainly in accordance with the findings from the qualitative analysis.

Despair, anxiety, and social withdrawal are common symptoms in depressed patients with incurable cancer, and, therefore, hypothesized as candidate symptom criteria. Other symptom criteria might need adjustment for improvement of relevance in this group of patients.

The aim of this study was to examine the concept of a good death from the perspectives of both the dying person and the family caregiver, as perceived by bereaved family caregivers of advanced cancer patients.

The data were gathered from five focus group discussions and one face-to-face qualitative interview conducted over 8 months among 18 bereaved family caregivers recruited from a local hospice. The transcripts of the focus groups and the interview were entered into NVivo Version 8 and were analyzed using the thematic approach.

A good death may be understood as having the biopsychosocial and spiritual aspects of life handled well at the end of life. Five major themes were identified. These were preparation for death, family and social relationships, moments at or near death, comfort and physical care, and spiritual well-being. Differences were also noted in what is important at the end of life between the patients and caregivers. Having a quick death with little suffering was perceived to be good by the patient, but the family caregiver wanted to be able to say a final goodbye to the patient. Patients tend to prefer not to die in their children's presence but the children wished to be present for the final moment. In addition, family caregivers reported it was important for them to be able to give the patients permission to die, to feel recognized for the efforts made, and to have had a fulfilling caregiving experience.

Whereas there are global attributes of a good death, our findings suggest that patients and family caregivers may define a good death differently. Therefore, there is a need to respect, address, and reconcile the differences, so that all parties may have a good experience at the end of a person's life.

This study aimed to investigate health-related quality of life of palliative care (PC) clients and their caregivers, at baseline and follow-up, following a referral to a community PC service.

Quality of life of clients and their caregivers was respectively measured using the McGill Quality of Life instrument (MQoL) and the Caregiver Quality of Life Cancer Index (CQoLC) instruments. Participants were recruited from June 8 to October 27, 2006. This study was undertaken in one zone of an Area Health Service in New South Wales, which has a diverse socioeconomic population. The zone covers an area of 6237 km2 and is divided into five sectors, each with a PC service, all of which participated in this study.

Data were obtained from 49 clients and 43 caregivers at baseline, and 22 clients and 12 caregivers at 8 week follow-up. Twenty-one participants died and six moved out of the area during the study. At baseline, clients reported a low mean score for physical symptoms (3.3 ± 1.9) and a high score for support (8.7 ± 1.0). Caregivers scored a total CQoLC of 63.9 ± 21.4 and clients had a total QOL of 6.1 ± 1.3. At follow up, matched data for 22 clients and 13 caregivers demonstrated no statistical differences in quality of life.

This study has provided evidence that health-related quality of life questionnaires show lower scores for physical health and higher scores for support, which can directly inform specific interventions targeted at the physical and support domains.

In a simultaneous care model, patients have concurrent access to both cancer-directed therapies and palliative care. As oncologists play a critical role in determining the need/timing of referral to palliative care programs, their understanding of the service and ability to communicate this with patients is of paramount importance. Our study aimed to examine oncologists' perceptions of the supportive care program at M.D. Anderson Cancer Center, and to determine whether renaming “palliative care” to “supportive care” influenced communication regarding referrals.

This qualitative study used semi-directed interviews, and we analyzed data using grounded theory and qualitative methods.

We interviewed 17 oncologists. Supportive care was perceived as an important time-saving application, and symptom control, transitioning to end-of-life care, family counseling, and improving patients' ability to tolerate cancer therapies were cited as important functions. Although most claimed that early referrals to the service are preferable, oncologists identified several challenges, related to the timing and communication with patients regarding the referral, as well as with the supportive care team after the referral was made. Whereas oncologists stated that the name change had no impact on their referral patterns, the majority supported it, as they perceived their patients preferred it.

Although the majority of oncologists favorably viewed supportive care, communication barriers were identified, which need further confirmation. Simultaneous care models that effectively incorporate palliative care with cancer treatments need further development.

Understanding and assessing health care personnel's work culture in palliative care is important, as a conflict between “high tech” and “high touch” is present. Implementing necessary changes in behavior and procedures may imply a profound challenge, because of this conflict. The aim of this study was to explore the work culture at a palliative medicine unit (PMU).

Healthcare personnel (N = 26) at a PMU in Norway comprising physicians, nurses, physiotherapists, and others filled in a questionnaire about their perception of the work culture at the unit. The Systematizing Person-Group Relations (SPGR) method was used for gathering data and for the analyses. This method applies six different dimensions representing different aspects of a work culture (Synergy, Withdrawal, Opposition, Dependence, Control, and Nurture) and each dimension has two vectors applied. The method seeks to explore which aspects dominate the particular work culture, identifying challenges, limitations, and opportunities. The findings were compared with a reference group of 347 ratings of well-functioning Norwegian organizations, named the “Norwegian Norm.”

The healthcare personnel working at the PMU had significantly higher scores than the “Norwegian Norm” in both vectors in the “Withdrawal” dimension and significant lower scores in both vectors in the “Synergy,” “Control,” and “Dependence” dimensions.

Healthcare personnel at the PMU have a significantly different perception of their work culture than do staff in “well-functioning organizations” in several dimensions. The low score in the “Synergy” and “Control” dimensions indicate lack of engagement and constructive goal orientation behavior, and not being in a position to change their behavior. The conflict between “high tech” and “high touch” at a PMU seems to be an obstacle when implementing new procedures and alternative courses of action.

Although cognitive therapy (CT) has established outpatient utility, there is no integrative framework for using CT in acute medical settings where most psychosomatic medicine (P-M) clinicians practice. Biopsychosocial complexity challenges P-M clinicians who want to use CT as the a priori psychotherapeutic modality. For example, how should clinicians modify the data gathering and formulation process to support CT in acute settings?

Narrative review methodology is used to describe the framework for a CT informed interview, formulation, and assessment in acute medical settings. Because this review is aimed largely at P-M trainees and educators, exemplary dialogues model the approach (specific CT strategies for common P-M scenarios appear in the companion article.)

Structured data gathering needs to be tailored by focusing on cognitive processes informed by the cognitive hypothesis. Agenda setting, Socratic questioning, and adaptations to the mental state examination are necessary. Specific attention is paid to the CT formulation, Folkman's Cognitive Coping Model, self-report measures, data-driven evaluations, and collaboration (e.g., sharing the formulation with the patient.) Integrative CT-psychopharmacological approaches and the importance of empathy are emphasized.

The value of implementing psychotherapy in parallel with data gathering because of time urgency is advocated, but this is a significant departure from usual outpatient approaches in which psychotherapy follows evaluation. This conceptual approach offers a novel integrative framework for using CT in acute medical settings, but future challenges include demonstrating clinical outcomes and training P-M clinicians so as to demonstrate fidelity.

Although depression appears to be associated with worse survival from cancer, the underlying mechanisms of this association are unknown. Tumor epidermal growth factor receptor (EGFR) genotype is a known predictor of survival in metastatic non-small cell lung cancer (NSCLC) and appears to be associated with depression. We hypothesized that tumor EGFR genotype may account for a relationship between depression and survival in this population. We investigated this possible relationship in a cohort of patients with metastatic NSCLC, in which we had previously demonstrated an association between depression and worse survival.

A cohort of 151 patients with newly diagnosed metastatic NSCLC were enrolled and followed in a randomized controlled trial of early palliative care. At enrollment, 150 had depression assessed with the Patient Health Questionnaire-9 (PHQ-9), and categorical scoring for major depressive syndrome (MDS) was used for analyses. Patients with tumor tissue available underwent EGFR genotyping. Associations with survival were tested using Cox proportional hazards models, adjusting for potential confounders.

Twenty-one patients (14.0%) met criteria for MDS. Forty-four patients (29.3%) had EGFR genotyping, and 17 (38.6%) of these harbored EGFR mutations. Patients with EGFR mutations had significantly lower PHQ-9 scores (p = 0.03), and none met criteria for depression. EGFR mutations were significantly associated with superior survival (p = 0.02). When both depression and EGFR genotype were simultaneously entered into the model, only EGFR mutations remained significantly associated with survival (p = 0.02), and the effect of depression was attenuated.

Depression is associated with worse survival in metastatic NSCLC, and this relationship may be at least partially explained by tumor EGFR genotype. Further study into whether depression could be associated with specific biologic properties of cancer that vary by genotype is warranted.

Hepatocellular carcinoma (HCC) presents a major health problem with its steadily increasing incidence in Western countries, and persistent high fatality rates worldwide. The well-recognized complexity and toxicity of its treatment as well as inadequate care and limited resources in mainland China exacerbate the difficulty of maintaining quality of remaining life of patients living with this illness. The goal of this comprehensive literature review was to identify promising clinical interventions for improving quality of life (QOL) of people with advanced HCC in mainland China.

A comprehensive literature review was performed in China Academic Journals (CAJ), Cochrane, and PubMed databases. The review was confined to studies of randomized controlled trials (RCT) for adults, in Chinese and English, from 1980 to 2012.

A total of 676 studies in Chinese and 391 studies in English were identified. Eighteen RCTs were selected for the final review, among which three were conducted in mainland China.

Nurse-led home-based comprehensive interventions using a collaborative care approach addressing multiple dimensions of QOL show promise for enhancing clinical outcomes for people with advanced HCC in mainland China. Education and psychosocial support combined with symptom management early in the illness trajectory and ongoing close attention to physical symptoms, emotional distress, as well as spiritual well-being are crucial for maintaining QOL of people with advanced HCC. Telephone monitoring appears to be a feasible way in rural as well as urban areas. Families are advised to be part of overall interventions. It is warranted that promising interventions aiming at improving QOL for advanced cancer patients reported in Western literature be further tested in mainland China.

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.

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.

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.

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.