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The American College of Surgeons Commission on Cancer (CoC) has set psychosocial distress screening as a new patient care standard to be met by 2015. The standard requires CoC-accredited cancer centers to integrate and monitor distress... more
The American College of Surgeons Commission on Cancer (CoC) has set psychosocial distress screening as a new patient care standard to be met by 2015. The standard requires CoC-accredited cancer centers to integrate and monitor distress screening and, when needed, refer patients to psychosocial health care services. We describe the uptake of distress screening reported by applicants to a distress screening cancer education program and the degree of and barriers to implementation of distress screening programs reported by selected participants. This cross-sectional study collected quantitative data online from applicants to the program between August 1 and November 15, 2013, described by frequencies, percentages, and measures of central tendency, and qualitative data in person from accepted participants on February 13, 2014, analyzed using an integrated approach to open-ended data. Applications were received from 70 institutions, 29 of which had started distress screening. Seven of 18...
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Research Interests: Sexuality, Quality of life, Women, Social Support, Body Image, and 18 moreSexual Health, Colorectal cancer, Humans, Survivors, United States, Female, Health Status, Aged, Middle Aged, Questionnaires, Women Health, Adult, Public health systems and services research, Cancer Survivor, Health surveys, Ostomy, Life Change Events, and Colorectal Neoplasms
A group of 235 allogeneic marrow recipients were contacted at least one year following their BMT to obtain information on their quality of life; 212 (90%) agreed to participate in this survey. A total of 162 adults and 50 pediatric... more
A group of 235 allogeneic marrow recipients were contacted at least one year following their BMT to obtain information on their quality of life; 212 (90%) agreed to participate in this survey. A total of 162 adults and 50 pediatric survivors were interviewed during clinic visits (5%) or over the telephone (95%). Changes in productive activity and marital status at the time of interview were studied, as well as the presence of physical symptoms and perception of a general sense of well-being. Older transplant recipients were observed to have a significantly higher incidence of chronic graft-versus-host disease, common colds, and skin changes when compared with pediatric transplant recipients (P < 0.01). Older subjects were also more likely to require any type of regular medication. Younger survivors were rated with a higher Karnofsky performance status and global subjective score. There were no significant differences between patients who received TBI as part of the conditioning regimen and those who did not, with the exception of increased cataract development in pediatric patients receiving TBI (P < 0.008). We conclude that most allogeneic marrow transplant survivors, especially those individuals of younger age at the time of their transplants, are doing well in the domains tested.
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Research Interests: Psychometrics, Quality of life, Discriminant Analysis, Humans, Survivors, and 13 moreFemale, Male, Regression Analysis, Middle Aged, Validity and Reliability, Questionnaires, Adult, Public health systems and services research, Neoplasms, Cancer Survivor, Reproducibility of Results, Instrument Development, and Quality Life
Research Interests: Quality of life, Causal Inference, Colorectal cancer, Psychological Well Being, Humans, and 13 moreSurvivors, Health related Quality of Life, Data Collection, Income, Health Status, Public health systems and services research, Study design, Quality Life, Household Income, Linear Regression Model, Cross Sectional Studies, Case Control Studies, and Colorectal Neoplasms
Currently, over 1,700,000 women are living with breast cancer in the United States. These long-term survivors of breast cancer are challenged to redirect their energy from issues of cancer treatment and early side effects toward quality... more
Currently, over 1,700,000 women are living with breast cancer in the United States. These long-term survivors of breast cancer are challenged to redirect their energy from issues of cancer treatment and early side effects toward quality of life issues related to long-term survivorship, such as menopause, infertility, fear of recurrence, family distress, and uncertainty. In an attempt to obtain patient perspectives on quality of life and health care issues faced by breast cancer survivors, focus group methodology was utilized in the first year of a 2 year study. The sample was stratified to represent three age groups: < 40 years, 40-60 years, and > 60, and was intended to represent different developmental levels believed to have varying experiences with quality of life and potentially divergent needs following breast cancer diagnosis. Results of these focus groups revealed unique quality of life concerns of breast cancer survivors across four domains of physical, psychological, social, and spiritual well being. Each of these domains yields important implications for future research and clinical practice.
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Care of patients at the end of life is contingent on adequate preparation of health care providers. Nursing, as the predominant caring profession in end-of-life (EOL) care, must achieve competence in physical and psychosocial care of... more
Care of patients at the end of life is contingent on adequate preparation of health care providers. Nursing, as the predominant caring profession in end-of-life (EOL) care, must achieve competence in physical and psychosocial care of patients and families facing terminal illness. Previous research has demonstrated that nursing education has not prepared nurses to provide optimum EOL care. To date, there has not been a unified or organized effort to broadly address the preparation of nurses in EOL care. This article describes one national project, the End-of-Life Nursing Education Consortium (ELNEC), which was developed as a comprehensive effort to improve EOL care by nurses in the United States. The ELNEC project consists of EOL education for various nursing audiences: the undergraduate faculty; continuing education providers; paediatrics; oncology; and the graduate faculty. This organized effort is a major step towards strengthening nursing knowledge in EOL care to improve care of the dying.
Research Interests: Program Evaluation, Nursing, Hospice & Palliative Care Nursing, Forecasting, Pediatric nursing, and 17 morePalliative Medicine, Curriculum, Humans, Geriatric Nursing, Nursing Education, End of life, United States, Oncology Nursing, Follow-up studies, Total Quality Management, Nursing Education and Research in Nursing, Clinical Sciences, Public health systems and services research, Clinical Competence, Palliative, Terminal care, and Training Program
Research Interests: Genetics, Psychology, Nursing, Decision Making, Focus Groups, and 27 moreAustralia, Breast Cancer, Quality of life, Health, Ovarian Cancer, Genetic counseling, Canada, Humans, Female, Focus Group, Decision Support, Mastectomy, Clinical Sciences, Aged, Middle Aged, Information Content, Questionnaires, Adult, Public health systems and services research, Metastatic Breast Cancer, Patient Participation, Pilot Projects, Antineoplastic Agents, Choice Behavior, Non small Cell Lung Cancer, Ovariectomy, and Genetic
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Research Interests: Nursing, Quality of life, Social Support, Qualitative Research, Sexual Health, and 18 moreErectile dysfunction, Clinical Nurse, California, Indiana, Humans, Arizona, Male, Sexual Behavior, Veterans, Men, Interpersonal Relations, Risk factors, Health Status, Aged, Questionnaires, Risk Factors, Psychological Models, and Case Control Studies
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Pain management is intimately linked to decision making. Nurses play a key role in making decisions regarding pain and its management. This paper presents data from a preliminary study (N = 53) extending the investigators' pain... more
Pain management is intimately linked to decision making. Nurses play a key role in making decisions regarding pain and its management. This paper presents data from a preliminary study (N = 53) extending the investigators' pain research into the areas of clinical decision making and ethical dilemmas related to pain management. Nurses completed surveys focused on actual experiences of caring for patients in pain. The results identify common clinical decisions related to pain, barriers to providing optimum pain relief, and ethical/professional conflicts in pain management. Decisions related to the amount of pain intensity, when to give medications, and choice of analgesics. Nurses identified verbal and nonverbal cues central to their decisions regarding pain assessment. Barriers to effective pain management included physician knowledge and cooperation, patient/family knowledge and cooperation, as well as nursing knowledge and time. Respondents identified ethical dilemmas about overmedication or undermedication, conflicts with physicians or patients, and concern over opioid side effects. A tentative model of decision making related to pain is presented.
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This study identified attributes that define the content domain of quality of life in a sample of 41 cancer patients with chronic pain. Patients were asked four open-ended questions about the meaning of quality of life, what contributes... more
This study identified attributes that define the content domain of quality of life in a sample of 41 cancer patients with chronic pain. Patients were asked four open-ended questions about the meaning of quality of life, what contributes to a good or poor quality of life, and how pain influences quality of life. Content analysis of responses revealed three categories of attributes that embrace the quality-of-life content domain. The first category is physical well-being. It includes general functioning and disease/treatment-specific attributes. The second is psychological well-being. It includes affective-cognitive attributes, coping ability, meaning of pain and cancer, and accomplishment attributes of quality of life. The third is interpersonal well-being. It incorporates social support and social/role functioning attributes. Replications of the current study in other groups of patients may yield data to support a two-part, multidimensional quality-of-life instrument. A norm-referenced measure can be used to evaluate quality of life in terms of attributes that are salient regardless of the disease or treatment. A domain-referenced measure may be used to evaluate attributes whose salience is dependent on specific disease, treatment, or life events.
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This article presents findings from an exploratory, descriptive study that investigated the experiences of pain in the home from the perspective of the patient, the primary family caregiver, and the home care nurse. The following research... more
This article presents findings from an exploratory, descriptive study that investigated the experiences of pain in the home from the perspective of the patient, the primary family caregiver, and the home care nurse. The following research questions are addressed: What are the special problems associated with pain management at home as identified by patients, caregivers, and nurses? What are the similarities and differences among patients, caregivers, and nurses regarding issues of managing pain at home? Qualitative techniques were used to collect and analyze data. The sample included 10 cancer patients with pain and their respective caregivers and nurses. After the in-depth interviews were transcribed, a multidisciplinary research team performed content analysis on the data. Overall, the findings suggest that patients approach pain management with a struggle for control, whereas self-denying caregivers seek to provide comfort, and nurses attempt to fulfill an urgent mission to eradicate pain.
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Currently, 1,721,700 women are living with breast cancer in the United States. As the number of survivors of breast cancer continues to rise, so must our knowledge about unique quality-of-life concerns. This article reports the results of... more
Currently, 1,721,700 women are living with breast cancer in the United States. As the number of survivors of breast cancer continues to rise, so must our knowledge about unique quality-of-life concerns. This article reports the results of a study on quality of life in women with breast cancer and validates the model of quality of life in this population. To explore these concerns and to validate a breast cancer quality-of-life model, 21 survivors of breast cancer, across three age strata (younger than 40 years, 40 to 60 years, and older than 60 years), were interviewed and asked to complete quantitative surveys on pain and quality of life. Across all age groups, unique issues of survivorship include those related to physical, psychological, social, and spiritual well-being. In the domain of physical well-being, the areas of worst outcome were in menstrual changes and fertility, fatigue, and pain. In the domain of psychological well-being, predominant needs were in the areas of fear of the spread of cancer, distress from surgery, recurrence, fear of second cancer, impact on self-concept, and fear of future tests. The social well-being subscale identified the greatest disruption in the area of family distress. The spiritual well-being subscale showed greatest disruption in the area of uncertainty, although other aspects of this domain were usually rated in a positive direction (e.g., importance of religious activities). The data demonstrated the need for further research, assessment, and intervention across each of the quality-of-life domains. There is a significant need to address physical problems; however, the psychological domain demonstrated the greatest area of distress. The multidimensional needs of breast cancer survivors emphasize the need for multidisciplinary collaboration.