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The purpose of this qualitative study was to investigate how frontline healthcare professionals witness and understand disparity in cancer care.
Method:
Six healthcare providers from a range of care settings, none with < 15 years of frontline experience, engaged with researchers in an iterative process of identifying and reflecting on equity and disparity in cancer care. This knowledge exchange began with formal interviews. Thematic analysis of the interviews form the basis of this article.
Results:
Participants drew attention to health systems issues, the meaning and experience of discontinuities in care for patients at personal and community levels, and the significance of social supports. Other concerns raised by participants were typical of the literature on healthcare disparities.
Significance of results:
Providers at the front lines of care offer a rich source of insight into the operation of disparities, pointing to mechanisms rarely identified in traditional quantitative studies. They are also well positioned to advocate for more equitable care at the local level.
Age-based screening tools and assessment measures are crucial to the provision of best practice care for adolescent and young adult (AYA) cancer patients. Unfortunately, there are limited psychosocial tools developed for this age group and pediatric or adult measures are often distributed with the assumption that they are “close enough.” We describe a collaborative Australian project that strives to improve what currently exists for the psychosocial assessment of and planning for the 15–25-year-old age group.
Method:
Using the National Comprehensive Cancer Network's Distress Thermometer and the HEADSS Assessment as a foundation, the tools were developed in consultation with Australia's leading AYA clinicians, AYAs currently undergoing medical treatment, and a group of AYA survivors through a process of discussion groups and clinical interviews.
Results:
The result is the first available AYA-specific screening tool, care plan pro forma, and psychosocial assessment measure developed for use within the oncology sector. These new tools will assist clinicians working with this population group to support psychosocial coping during active treatment and promote healthy post-treatment survivorship.
Significance of results:
Over time, further validation procedures will add to the veracity of the measures. Until then, these measures represent the best available in Australia. They highlight a clinically recognized minimum standard of care that all young cancer patients, regardless of treatment location, have the right to receive.
Breathlessness is a subjective symptom, which makes it difficult to define and understand. The aim of the present study was to illuminate how patients suffering from breathlessness experience their everyday life.
Method:
The study was a qualitative study, and the focus of the analysis was the patients' descriptions of their experiences of breathlessness using a diary with two unstructured questions for a period of 7 consecutive days. Sixteen participants: 7 men, mean age 65 ± 7 (range 55–73 years old), and 9 women, mean age 65 ± 9 (range 50–72 years old) participated in the study.
Results:
Two themes emerged from the analysis: 1) Impaired quality of life and 2) symptom tolerance and adaptation. The theme “impaired quality of life” included the categories limited physical ability, psychological burdens, and social life barriers. The theme “symptom tolerance and adaptation” included importance of health care, social support, hobbies and leisure activities, and coping strategies.
Significance of results:
The findings in our study showed that patients, in spite of considerable difficulties with shortness of breath, found relief in several types of activities, in addition to drug therapy. The result indicates that the “biopsychosocial model” is an appealing approach that should be discussed further to gain a better understanding of breathlessness.
As medical education evolves, emphasis on chronic care management within the medical curriculum becomes essential. Because of the consistent lack of appropriate end-of-life care training, far too many patients die without the benefits of hospice care. This study explores the association between physician knowledge, training status, and level of comfort with hospice care referral of terminally ill patients.
Method:
In 2011, anonymous surveys were distributed to physicians in postgraduate years 1, 2, and 3; fellows; hospital attending physicians; specialists; and other healthcare professionals in five hospitals of a large health system in New York. Demographic comparisons were performed using χ2 and Fisher's exact tests. Spearman correlations were calculated to determine if professional status and experience were associated with comfort and knowledge discussing end-of-life topics with terminal patients.
Results:
The sample consisted of 280 participants (46.7% response rate). Almost a quarter (22%) did not know key hospice referral criteria. Although 88% of respondents felt that knowledge of hospice care is an important competence, 53.2% still relinquished advance directives discussion to emergency room (ER) physicians. Fear of patient/family anger was the most frequently reported hospice referral barrier, although 96% of physicians rarely experienced reprisals. Physician comfort level discussing end-of-life issues and hospice referral was significantly associated with the number of years practicing medicine and professional status.
Significance of results:
Physicians continue to relinquish end-of-life care to ER staff and palliative care consultants. Exploring unfounded and preconceived fears associated with hospice referral needs to be integrated into the curriculum, to prepare future generations of physicians. Medical education should focus on delivering the right amount of end-of-life care training, at the right time, within the medical school and residency curriculum.
Palliative care requires nurses to be knowledgeable about different aspects of the care that they provide for dying patients. This study, therefore, was conducted to examine oncology and intensive care nurses' knowledge about palliative care in Southeast Iran.
Method:
Using the Palliative Care Quiz for Nursing (PCQN), 140 oncology and intensive care unit (ICU) nurses' knowledge about palliative care in three hospitals supervised by Kerman University of Medical Sciences was assessed.
Results:
In PCQN, the mean score was 7.59 (SD: 2.28). The most correct answers were in the category of management of pain and other symptoms (46.07%). The lowest correct answers were in the category of psychosocial and spiritual care (19.3%).
Significance of results:
These findings suggest that nurses' knowledge about palliative care can be improved by establishing specific palliative care units to focus on end-of-life care. This establishment requires incorporation of an end-of-life nursing education curriculum into undergraduate nursing studies.
The purpose of this study was to explore and describe decisions that faced newly enrolled hospice patients and their caregivers after hospice enrollment.
Method:
An exploratory, descriptive, cross-sectional design was employed using qualitative methods. In-depth in-person interviews were conducted with current hospice patients (n = 35) and caregivers (n = 45) from 53 families.
Results:
The decision to enroll in hospice was a critical juncture on the trajectory of a terminal illness that allowed patients and their families an opportunity to consider subsequent tasks that were important for life closure. A typology of five decisions is presented: (1) operationalized advance care planning (ACP): a renewed focus on decisions about care at life's end; (2) surrogate decision-making: caregivers begin making both informal and formal decisions for the dying person; (3) meaning-making: the foreshortened time brings into focus decisions about seeing special people, attending events, and creating memories; (4) Location of death: decisions about whether the person wants to and can remain at home to die; and (5) final acts: decisions about funeral arrangements, wills, and leaving a legacy become central. ACP was found to exist on a continuum that ranged from absent ACP, dormant ACP, simplified ACP to activated ACP. Hospice enrollment became a catalyst for reactivating discussion of end-of-life choices.
Significance of results:
Hospice enrollment prompts the need to consider subsequent important choices that contribute to meaningful life closure, are central to the completion of a family relationship, and may influence adaptation in bereaved caregivers. It is important for clinicians to recognize that well-timed encouragement to consider and explore the use of hospice services, although it may indeed diminish hope for cure or recovery, simultaneously offers an opportunity to engage with important and time-sensitive developmental tasks.
A challenge in understanding the needs of dementia family caregivers (DFC) within the purview of dementia as a terminal illness rests on the fact that literature in this area is dispersed across disciplines and not specifically grounded within the realm of palliative care. The objective of this paper is to describe the domains of DFC needs and their impact on the delivery of palliative care services.
Methods:
A literature search pertaining to dementia family caregivers and palliative/end-of-life care was conducted using the databases Medline, CINHAL, Ageline, PsychInfo, and Scopus for articles published in the English language between 1997 and 2011.
Results:
Supporting family caregivers of individuals with dementia throughout the disease trajectory requires consideration of caregivers : (1) physical, emotional, and psychological needs; (2) information and decisional support needs; and (3) instrumental support needs. The unique nature and prolonged duration of these needs directly influences the palliative care services and supports required by these family caregivers.
Significance of results:
Understanding the scope of DFC needs help further our understanding of how these needs may impact the delivery of palliative care services, and assists in developing a model of care for those dying from dementia and for their family caregivers.
Feldman (2011) has proposed a new approach to the treatment of posttraumatic stress disorder (PTSD) in individuals at the end-of-life known as Stepwise Psychosocial Palliative Care (SPPC). This approach helps to compensate for the disadvantages of existing PTSD interventions with regard to treating patients with life-limiting and terminal illnesses by employing a palliative care philosophy. The model relies on cognitive and behavioral techniques drawn from evidence-based approaches to PTSD, deploying them in a stage-wise manner designed to allow for interventions to track with patents’ needs and prognoses. Because this model is relatively new, we seek to explore issues related to its implementation in the complex settings in which providers encounter patients at the end-of-life. We also seek to provide concrete guidance to providers regarding the management of PTSD at the end-of-life in diverse palliative care settings.
Methods:
We examine three specific cases in which the SPPC model was utilized, highlighting particular treatment challenges and strategies. These case studies provide information regarding the SPPC model's application to patients in two distinct palliative care settings—a palliative care consult team and an inpatient palliative care unit.
Results:
The SPPC model's stage-wise approach allows for its flexible use given a variety of constraints related to setting and patient issues.
Significance of results:
The SPPC model provides an alternative to existing psychosocial treatments for PTSD that may be more appropriate for patients at the end of life.