Objectives: Caregiver outcomes among those caring for symptomatic advanced cancer patients at VA Medical Centers have not been well reported. The purposes of this study were (1) to identify the caregiver characteristics and their unmet needs; (2) to examine the association between caregiver unmet needs, caregiver burden, and caregiver satisfaction; and (3) to identify the independent predictors of different caregiver outcomes.

Methods: One hundred caregivers completed three caregiver outcomes instruments: Family Inventory of Needs (FIN), Care Strain Index (CSI), and Family Satisfaction with Advanced Cancer Care (FAMCARE). The caregivers' demographics and their function, depression, health status, and social support status as well as the caregivers' perception of the patients' unmet needs (PPUN) were obtained. Principal component analysis was performed to examine the underlying dimensions of caregiver outcome measures. Pearson correlation and stepwise multivariate regression analyses were performed.

Results: The median number of unmet needs was 2 and the median CSI score was 4. Most of unmet needs were related to information needs (needing more information related to home care, finding help with the problems at home, and disease prognosis) and symptom management. The majority of caregivers were satisfied or very satisfied by the care patients received. Spouse caregivers (N = 60, 60%) were significantly older (p = 0.006) with higher unemployment rates (p = 0.001), higher depression scores (p = 0.04), and lower social support scores (p < 0.0001) than nonspouse caregivers (N = 40, 40%). The PPUN predicted caregiver burden and the presence of caregiver unmet needs independently. The presence of caregiver unmet needs was the only independent predictor of caregiver satisfaction. Caregivers with a high PPUN and higher depression score experienced a higher burden.

Significance of the research: The caregiver outcome model is proposed and needs to be further validated in a new cohort of caregivers.

Purpose: Caring for patients with cancer can be taxing for front-line health care providers. The growing intensity of treatment protocols, in conjunction with staff shortages, reduced hospital stays, and broader pressures on the health care system may exacerbate these challenges, leading to increased risk for burnout. This article reviews the research literature regarding the prevalence of burnout and psychosocial distress among oncology providers, examines multifactorial occupational and personal determinants of risk, and considers intervention strategies to enhance resilience.

Methods: Literature review of empirical peer-reviewed studies focusing on prevalence and correlates of burnout among oncology physicians and nurses.

Results: Findings from a number of studies using validated measures and large samples suggest that prevalence rates for burnout and psychosocial distress are high among oncology staff, though not necessarily higher than in non-cancer-practice settings. A growing database has examined occupational (e.g., workload) and demographic (e.g., gender) factors that may contribute to risk, but there is less information about personal (e.g., coping) or organizational (e.g., staffing, physician–nurse relations) determinants or multilevel interactions among these factors. Oncologist burnout may adversely affect anticipated staff turnover. Other important endpoints (biological stress markers, health status, patient satisfaction, quality-of-care indices) have yet to be examined in the oncology setting. Intervention research is at a more rudimentary phase of development.

Conclusions: Burnout and distress affect a significant proportion of oncology staff. There is a need for additional conceptually based, longitudinal, multivariate studies regarding burnout and its associated risk factors and consequences.

Objective: Adolescents with cancer pose a unique challenge to current health systems and the professional working with them. Throughout the world, it is increasingly recognized that the needs of this particular group of patients may not be met through existing services within either the pediatric or adult systems. In Australia, this is a new area of research, and little is known about the unmet physical, psychological, and social needs of this patient group. This study reports the outcomes of a focus group conducted to explore these issues.

Methods: Six young people, with a mean age at diagnosis of 17 years and 6 months, participated in a 2-h focus group. A qualitative analytic approach was utilized to examine themes.

Results: The participants identified a number of concerns relating to three broad categories: information provision, treatment processes, and survivorship.

Significance of results: The research findings support previously documented evidence that indicate gaps in cancer services provided to this age group. Importantly, these gaps can be narrowed by improving access to adolescent multidisciplinary teams and introducing specific training for health care professionals.

The aim of this review is to evaluate the current status concerning attitudes, beliefs and/or practices of patients, family members, health professionals and/or caregivers regarding truth disclosure about a cancer diagnosis in the Greater Middle East countries. A search was done via MedLine for all publications related to this review objective. 55 publications were included emanating from Egypt, Iran, Israel, Jordan, Kuwait, Lebanon, Palestine Pakistan, Saudi Arabia, Turkey, and United Arab Emirates. In the Greater Middle East region, a diagnosis of cancer is still mixed with social stigma and misperceptions related to incurability. Physicians conserve a truth disclosure policy in which from one side they respect some of the historical and cultural misperceptions about cancer and accordingly, tell the truth about cancer to one of the family members and from another side acknowledge the patients' right to know the truth and tend to disclose it for him(or her) when possible. Family members and caregivers' attitudes, perceptions and beliefs about telling the truth to the patient seem to be in favor of concealment. Discrepant results concerning physicians' and patients' evaluation of the quality of truth disclosure exist in the literature. Education programs in breaking bad news are lacking in many countries. Finally, the most important and common problem affecting truth disclosure to a patient suffering from cancer is the lack of codes and legislations concerning the patients' rights in an informed consent. Studies, legislations and training programs are needed in this domain in Middle Eastern societies.

Objective: A meta-summary of the qualitative literature on spiritual perspectives of adults who are at the end of life was undertaken to summarily analyze the research to date and identify areas for future research on the relationship of spirituality with physical, functional, and psychosocial outcomes in the health care setting.

Methods: Included were all English language reports from 1966 to the present catalogued in PubMed, Medline, PsycInfo, and CINAHL, identifiable as qualitative investigations of the spiritual perspectives of adults at the end of life. The final sample includes 11 articles, collectively representing data from 217 adults.

Results: The preponderance of participants had a diagnosis of cancer; those with HIV/AIDS, cardiovascular disease, and ALS were also represented. Approximately half the studies were conducted in the United States; others were performed in Australia, Finland, Scotland, and Taiwan. Following a process of theme extraction and abstraction, thematic patterns emerged and effect sizes were calculated. A spectrum of spirituality at the end of life encompassing spiritual despair (alienation, loss of self, dissonance), spiritual work (forgiveness, self-exploration, search for balance), and spiritual well-being (connection, self-actualization, consonance) emerged.

Significance: The findings from this meta-summary confirm the fundamental importance of spirituality at the end of life and highlight the shifts in spiritual health that are possible when a terminally ill person is able to do the necessary spiritual work. Existing end-of-life frameworks neglect spiritual work and consequently may be deficient in guiding research. The area of spiritual work is fertile ground for further investigation, especially interventions aimed at improving spiritual health and general quality of life among the dying.

Objective: The purpose of this study is to examine the perspectives of both the spousal caregiver and care recipient on the caregiving experience in home-based palliative care.

Methods: A qualitative research strategy involving home-based face-to-face interviews with older palliative care patients and their spousal caregivers was used to examine the caregiving experience.

Results: Ten spousal caregivers and care recipient dyads participated in the study. Most informal caregivers viewed caregiving as an extension of the family relationship where caregiving responsibilities evolved over time. Spousal caregivers identified many negative reactions to caregiving, such as fatigue or weariness, depression, anger and sadness, financial stresses, and lack of time. Care recipients acknowledged the emotional and financial strain and expressed concern for their spouses. Both caregivers and care recipients were appreciative of home care services although they identified the need for additional services. They also identified difficulties in communication with formal providers and poor coordination of care among the various services. Both caregivers and care recipients disclosed some challenges with informal supports, but on the whole felt that their presence was positive. Additional positive aspects of caregiving reported by spouses included strengthened relationship with their spouse and discovering emotional strength and physical abilities in managing care.

Significance of results: Health care and social service professionals need to recognize and understand both caregiver and care recipient perspectives if they are to successfully meet the needs of both members of the dyad.

Objective: The aim of this project was to develop an appropriate and valid instrument for assessment by medical professionals in Japanese palliative care settings.

Methods: We developed a Japanese version of the Support Team Assessment Schedule (STAS-J), using a back translation method, and tested its reliability and validity. In the reliability study, 16 nurses and a physician who work in a palliative care unit evaluated 10 hypothetical cases twice at 3-month intervals. For the validity study, external researchers interviewed 50 patients with matignancy and their families and compared the results with ratings by the nurses in the palliative care unit.

Results: Our results with hypothetical cases were: interrater reliability weighted κ = 0.53–0.77 and intrarater reliability weighted κ = 0.64–0.85. In the validity study comparing nurse evaluations and the results of interviews with patients and families, complete agreement was 36–70%, and close agreement (±1) was 74–100%. As a whole, weighted κ were low: between −0.07 and 0.51. Our results were similar to those in the United Kingdom and Canada.

Significance of results: Although this research was conducted under methodologically limited conditions, we concluded that the STAS-J is a reliable tool and its validity is acceptable. The STAS-J should become a valuable tool, not only for daily clinical use, but also for research.

Objective: Disabling breathlessness is the most common symptom of advanced cardiopulmonary disease. It is usually intractable, even when patients receive maximal medical therapy for their underlying condition. A pilot study was undertaken to evaluate a newly formed palliative Breathlessness Intervention Service (BIS).

Methods: The methodology followed the Medical Research Council's Framework for the Evaluation of Complex Interventions (Phase I). Qualitative interviews were completed with patients and relatives who had used the service and clinicians who had referred to it. The focus of the interviews was the participants' experience of using BIS.

Results: Patients valued the positive educational approach taken to breathlessness, emphasizing what was possible rather than what had been lost. Non-pharmacological strategies, especially the hand-held fan and exercises, were rated very helpful and new to patients. Participants reiterated that breathlessness was frightening and isolating, exacerbating the disability it caused: the easy access to advice and flexibility of BIS helped to alleviate this. Participants wanted a written record of the advice given. Carers welcomed the focus on their needs. Clinicians valued sharing the management of patients with an intractable problem.

Significance of results: This Phase I study has helped to remodel the service rapidly by uncovering the aspects of BIS that users find most valuable and areas that need change or improvement. The BIS needs to provide written information, to reinforce and extend contacts with other agencies to build on support it already provides for patients and carers, and extend its flexibility and accessibility. Providing a “drop-in” service and continuing education after the initial program of contacts is completed could be a useful service development, warranting further evaluation. A qualitative methodology involving service users and referrers can help to shape service development rapidly.