Disparities in breast cancer survival and treatment for African American and low income women are well documented, yet poorly understood. As care for women with metastatic breast cancer (MBC) evolves to a chronic care model, any inequities in optimal treatment and management of symptoms must also be identified and eliminated. The purpose of this study was to explore how race and income status influence women's experiences with MBC, particularly the management of symptoms, by describing the perceived challenges and barriers to achieving optimal symptom management among women with MBC and exploring whether the perceived challenges and barriers differed according to race or income.

Quantitative techniques were used to assess demographics, clinical characteristics, symptom distress, and quality of life and to classify women into groups according to race and income. Qualitative techniques were used to explore the perceived challenges, barriers, and potential influences of race and income on management of symptoms in a prospective sample of 48 women with MBC.

Commonalities of themes across all groups were faith, hope, and progressive loss. Low-income African American women uniquely experienced greater physical and social distress and more uncertainty about treatment and treatment goals than the other delineated racial and economic groups.

There are many commonalities to the challenges of illness presented to women with MBC. There are also interesting, emerging thematic racial and economic differences, most compelling among the low income African American women with resultant practice and research implications.

Little is known about the factors that mediate the caregiving experience of informal carers at home, which could inform about ways of supporting them in their caregiving role. Our objective was to investigate the caring experience of carers for patients with an advanced progressive illness (chronic obstructive pulmonary disease [COPD], heart failure, cancer, or motor neuron diseases [MND]), who suffer from breathlessness.

A purposive sample of 15 carers was selected. They were recruited via the patients they cared for (who suffered from COPD, cancer, MND, or heart failure) from the hospital and the community. Data were collected through semistructured, in-depth interviews. All were tape-recorded and transcribed verbatim. The analysis used a Grounded Theory approach and NVivo software facilitated the management and analysis of the data.

Several key issues affected caring in a positive or a negative way. The threats to caring were uncertainty, carers' own health problems, an imploded world, negative reactions from outside, person loss, and acute exacerbations. Resources that carers drew on were acceptance, self-care, availability of support, feeling that caring is a shared responsibility with the patient, and “getting on with” caring in case of emergencies. Breathlessness was particularly challenging, and carers did not have any strategies to relieve the symptom. They were ill prepared for acute exacerbations.

Carers need to be included in opportunities for support provision in advanced illness. Negotiated involvement of a health professional could buffer the heavy responsibilities related to home care. They could provide problem-solving skills and build on the resources that carers draw on in response to what they experience as most threatening to their caring role.

Family therapy has developed several approaches to framing questions within family meetings, but few of these techniques have been adapted for palliative care. We focus on the application of questioning techniques from systemic family therapy to palliative care. More specifically, we describe and give examples of the model of asking questions developed by Karl Tomm (1988) through its application in Family Focused Grief Therapy (FFGT), a preventive intervention delivered to high-risk families during palliative care and bereavement.

First, the type of questions used across the course of therapy is explored based on the interventive questioning model. Then, a case example is provided to demonstrate the use and adaptation of this model in a palliative care setting.

At the beginning of therapy, the most frequent questions were linear and circular, moving around the family to build up a picture of events from everyone's perspective. As for the frequency of reflexive and strategic questions, these increased as the therapy progressed, bringing the family to new perspectives. The case example fleshes out the importance of each type of question, all of which have a proper place in the course of therapy.

These illustrations highlight the value of having a model of questioning styles to guide the clinician when exploring palliative care issues, such as care provision, coping and grief, intimacy, and discussing death. This framework could be useful in guiding supervisors, trainees, and clinicians seeking to build skills and optimize their interventions in a palliative care setting.

To develop a communication skills training module for health care professionals about how to conduct a family meeting in palliative care and to evaluate the module in terms of participant self-efficacy and satisfaction.

Forty multispecialty health care professionals from the New York metropolitan area attended a communication skills training module at a Comprehensive Cancer Center about how to conduct a family meeting in oncology. The modular content was based on the Comskil model and current literature in the field.

Based on a retrospective pre–post measure, participants reported a significant increase in self-efficacy about their ability to conduct a family meeting. Furthermore, at least 93% of participants expressed their satisfaction with various aspects of the module by agreeing or strongly agreeing with statements on the course evaluation form.

Family meetings play a significant role in the palliative care setting, where family support for planning and continuing care is vital to optimize patient care. Although these meetings can be challenging, this communication skills module is effective in increasing the confidence of participants in conducting a family meeting.

To explore patients' understanding of decision making in the treatment of advanced cancer and to determine the factors they believe important to these processes in their care.

Surveys were distributed to consecutive outpatients with advanced malignancy attending a comprehensive cancer treatment center.

Patients believed that the medical condition (94%), their doctors' experience (81%), and the medical literature (73%) are the most important factors for decisions made in their care. They also value their relationship with the doctor (63%) and their own (the patients') values (63%), and just over a third considered their family's values and the doctors' personality important. Most did not believe the doctors' values should influence decisions made. They were mindful of the uncertainty involved in decisions in the setting of advanced cancer.

Overall, patients were satisfied with the decision-making processes and they understood and highly regarded the incorporation of factors, other than their medical condition, in their care.

Many studies have identified negative and distressing consequences experienced by informal cancer carers, but less attention has been given to positive and beneficial aspects of caring. This qualitative study examined the positive aspects of caring as subjectively constructed by bereaved informal cancer carers, a group of individuals who are in a position to make sense of their caring experiences as a coherent whole.

Twenty-three bereaved informal cancer carers were interviewed, and their accounts were analyzed using a thematic analytical approach from a phenomenological perspective.

The participants were able to identify positive and beneficial aspects of caring. These included the discovery of personal strength, through adversity, acceptance, and necessity; the deepening of their relationship with the person for whom they cared; and personal growth through altered relationships with others and altered perspectives on living. Many participants gave accounts of focusing on these positive benefits when they reflected on their caring experiences.

We concluded that benefit finding in the face of adverse events serves an important function in allowing individuals to incorporate difficult experiences into their worldview in a meaningful way, thus maintaining positive beliefs about the world. This has implications for the development of interventions for informal cancer carers and for those who are bereaved following caring.

In 2008 over two million family caregivers will become bereaved. The vast majority of these caregivers have provided ‘round-the-clock care for a period ranging from months to years. Bereaved family caregivers report insomnia symptoms that persist beyond 1 year, longer than what is seen in bereaved noncaregivers, placing them at increased risk of depression and complicated grief. Despite some rewarding elements, caregiving is a stressful and exhausting role that often requires the caregiver to restructure his or her life around the needs of the patient. Once the patient dies, the structure is lost. Cognitive behavioral therapy interventions are effective in providing structure. This pilot study explored the feasibility of a two-session home-based cognitive behavioral therapy–insomnia (CBT-I) intervention for bereaved family caregivers.

A 5-week longitudinal descriptive study design was used with 11 adult primary family caregivers of patients who died from cancer. A master's prepared nurse delivered two CBT-I intervention sessions in participant homes. Data collection sessions occurred at baseline, 3, and 5 weeks. A debriefing session was held at Week 6.

Participant evaluations of the intervention indicated that it was feasible and acceptable (e.g., 100% would recommend it to others); objective data further supported its feasibility (e.g., 100% completed the trial). In addition, when comparing baseline with Weeks 3 and 5, participants demonstrated improvement in insomnia and depressive symptoms.

The results of this pilot study suggest that the intervention is feasible and acceptable and produces promising effects on insomnia and depressive symptoms in bereaved family caregivers.

The relatives’ burdens in palliative care are considerable and may cause fatigue. The overall aim of this study was to gain a greater understanding of fatigue in relatives of patients cared for in palliative care settings.

This study has a descriptive, comparative, and cross-sectional design. The sample consisted of relatives of all patients cared for in palliative care settings in Uppsala County during a specific day. Relatives completed a questionnaire consisting of the Multidimensional Fatique Inventory (MFI-20) and questions from the Karolinska Sleepiness Scale (KSS) and Karolinska Sleep questionnaire (KSQ).

Relatives (n = 56) scored high on every dimension on the MFI-20 scale. Two significant negative correlations were found to exist between age and fatigue, with younger relatives reporting more mental fatigue (p < .01) and more reduced activity (p < .01) than older relatives. Relatives of patients in institutional care had higher values concerning mental fatigue (p < .01) and reduced motivation (p < .05). Relatives of mostly bedridden patients were significantly more tired but did not have significantly less motivation than relatives of mostly ambulatory patients.

The findings imply that fatigue is highly prevalent in relatives of patients in palliative care. The sample in this study scored higher in comparison with norm values and also in comparison with relatives of patients with end-stage renal disease. Their scores were similar to those of cancer patients undergoing radiotherapy.

Fatigue is currently recognized as an undertreated symptom in cancer. To date the association between fatigue and inflammatory activation has not been examined in patients with advanced cancer. Our exploratory investigation considered whether variations in routinely available hematological parameters relate to the severity of fatigue reports.

Fatigue, white blood cell differential, and hemoglobin concentration were assessed in 44 Stage IIIb and IV non-small-cell lung cancer (NSCLC) patients. Days of survival and the relative timing of treatment discontinuation were also recorded. Relationships between fatigue intensity and length of survival and between fatigue and hematological variables were examined using binomial and linear regressions respectively.

When we controlled for effects related to age, gender, and time until treatment termination, more intense fatigue was associated with shorter survival (β = −.34, p = .03). Lower hemoglobin concentrations were associated with more intense fatigue (β = −.36, p = .04). When we controlled for the effect attributable to hemoglobin, higher neutrophil (β = .43, p = .01) and monocyte (β = .31, p = .05) concentrations were associated with reports of more severe fatigue.

This exploratory study provides empiric data showing that the severity of fatigue reported by advanced-stage NSCLC patients is significantly associated with length of survival. Consistent with existing data, linear regression identified a negative association between fatigue intensity and hemoglobin concentration. When we controlled for this effect, further linear regressions identified significant relationships between fatigue and blood concentrations of neutrophils and monocytes. Further, the magnitude of relationship between myeloid cell concentrations and fatigue was similar to the effect size identified for the relationship between hemoglobin and fatigue. Thus, the indirect measure of inflammatory state provided by routinely assessed myeloid cell counts appears to play as strong a role as the established variable, hemoglobin, in accounting for the fatigue reported by this sample of advanced-stage lung cancer patients.

Oncologic work can be satisfying but also stressful, as staff support patients and families through harsh treatment effects, uncertain illness trajectories, and occasional death. Although formal support programs are available, no research on the effects of staff witnessing patients' supportive therapies exists. This research examines staff responses to witnessing patient-focused music therapy (MT) programs in two comprehensive cancer centers.

In Study 1, staff were invited to anonymously complete an open-ended questionnaire asking about the relevance of a music therapy program for patients and visitors (what it does; whether it helps). In Study 2, staff were theoretically sampled and interviewed regarding the personal effects of witnessing patient-centered music therapy. Data from each study were comparatively analyzed according to grounded theory procedures. Positive and negative cases were evident and data saturation arguably achieved.

In Study 1, 38 staff unexpectedly described personally helpful emotional, cognitive, and team effects and consequent improved patient care. In Study 2, 62 staff described 197 multiple personal benefits and elicited patient care improvements. Respondents were mostly nursing (57) and medical (13) staff. Only three intrusive effects were reported: audibility, initial suspicion, and relaxation causing slowing of work pace. A substantive grounded theory emerged applicable to the two cancer centers: Staff witnessing MT can experience personally helpful emotions, moods, self-awarenesses, and teamwork and thus perceive improved patient care. Intrusive effects are uncommon. Music therapy's benefits for staff are attributed to the presence of live music, the human presence of the music therapist, and the observed positive effects in patients and families.

Patient-centered oncologic music therapy in two cancer centers is an incidental supportive care modality for staff, which can reduce their stress and improve work environments and perceived patient care. Further investigation of the incidental benefits for oncologic staff witnessing patient-centered MT, through interpretive and positivist measures, is warranted.

To investigate the association between cancer patients' reluctance for emotional disclosure to their physician and underrecognition of depression by physicians.

Randomly selected ambulatory patients with lung cancer were evaluated by the Hospital Depression and Anxiety Scale (HADS), and those with scores over the validated cutoff value for adjustment disorder or major depressive disorder were included in this analysis. The data set included the responses to the 13-item questionnaire to assess four possible concerns of patients in relation to emotional disclosure to the treating physician (“no perceived need to disclose emotions,” “fear of the negative impact of emotional disclosure,” “negative attitude toward emotional disclosure,” “hesitation to disturb the physician with emotional disclosure”). The attending physicians rated the severity of depression in each patient using 3-point Likert scales (0 [absent] to 2 [clinical]). Depression was considered to be underrecognized when the patients had a HADS score above the cutoff value, but in whom the depression rating by the attending physician was 0.

The HADS score was over the cutoff value in the 60 patients. The mean age was 65.1 ± 10.0, and 82% had advanced cancer (Stage IIIb or IV or recurrence). Depression was underrecognized in 44 (73%) patients. None of the four factors related to reluctance for emotional disclosure was associated with the underrecognition of depression by the physicians. None of the demographic or cancer–related variables were associated with depression underrecognition by physicians.

The results did not support the assumption that patients' reluctance for emotional disclosure is associated with the underrecognition of depression by physicians.

When a family member is faced with a terminal illness, the impending death presents a crisis and a challenge to the entire family as a system. This article highlights the importance of caring for a family when one member has a life-threatening illness, and describes the applicability of Family Systems Theory and its major tenets to the palliative cancer population.

A MedLine and CINAHL search of Family Systems Theory related papers was conducted.

Research studies that have been done fail to capture the view of the entire family system, often limiting the perspectives of the family to one single member. The concepts of holism, balance, boundaries, and hierarchal subsystems must be addressed in the care of any family, including those who have a family member who is dying.

A Family Systems Theory framework can be useful in helping health care providers, and particularly nurses, deliver optimal care to palliative cancer patients and their families and standardize the way research is done by providing an appropriate framework with which to study the family. In addition, the adoption of Family Systems Theory as the standard framework from which to study families in palliative care will provide consistency for future studies that is presently lacking. Finally, nursing interventions to care for the family are suggested based on Family Systems Theory.

This article is a literature report on grief issues for health care professionals, undertaken to identify Japanese nurses' grief experience when they work in palliative care units. Health care professionals' grief experience and its impact have not been well understood or identified as a significant issue in Japan.

Published articles relating to this study were searched using electronic catalogues such as CINAHL and PsycINFO, books, and research publications. Key words used for the search were “grief,” “palliative care,” “nurse,” “staff support,” and “Japan.” Both English and Japanese were used for the literature search in order to collect information regarding nurses' grief and support systems in Japan and elsewhere. The literature search covered the period 1990–2006 inclusive.

This article explores these issues in the literature as preparation for establishing a study that will particularly look at the influence of nurses' grief on the quality of care provided.

Consideration of Japanese culture as it relates to death and dying and to nursing culture is a significant part of this work.

The belief that cancer inevitably leads to a dreadful and painful death is widespread. This may contribute to society's cancerophobia and denial with subsequent frequent delays in seeking medical attention and treatment for suspected cancer. Cancerophobia is an active behavior of fear of cancer that can lead to repeated medical examination without giving full reassurance to the patient. Denial is a mechanism of defense that usually helps the patient to cope with painful, threatening, overwhelming, or awkward thoughts. When it turns out to be ineffective and pathological, it can cause either delay or avoidance in seeking treatment for symptoms relevant for a true malignancy and will lead inexorably to death if not cured.

To illustrate this, we report the case of a 62-year-old woman who died of massive concealed ovarian cancer, straightaway at a palliative stage, who always had a persistent denial of her medical condition and a past history of cancerophobia.

With this case report, we would like to point out that supportive or palliative care staff should pay attention to this lethal behavior.

Some brief recommendations to deal with this specific problematic are outlined.