Gloria Juarez

Meaning of Illness and Spirituality in Ovarian Cancer Survivors

PURPOSE/OBJECTIVES To describe spirituality and meaning of illness in survivors of ovarian cancer. DESIGN Ethnographic study based on seven years of natural correspondence among survivors of ovarian cancer and a support newsletter. SAMPLE 21,806 letters, cards, and e-mails received from survivors of ovarian cancer from 1994-2000. METHODS Analysis was based on the Quality of Life (QOL) Ovarian Cancer Instrument. Data were bracketed and assigned within a table according to QOL themes. MAIN RESEARCH VARIABLES Spirituality, meaning, QOL, and cancer survivorship. FINDINGS Spirituality was relied on heavily as a coping mechanism, as well as a method of deriving meaning from the cancer experience. Data from survivors of ovarian cancer validated previously established meaning in cancer themes and identified eight new themes specific to meaning in ovarian cancer survivorship. CONCLUSIONS The nature of ovarian cancer implicates specific characteristics that alter the meaning of QOL and survivorship. Spirituality is an important component of QOL and contributes to the process of deriving meaning from the ovarian cancer experience. IMPLICATIONS FOR NURSING Knowledge of the unique survivorship issues of patients with ovarian cancer can enable nurses to improve their care for these women.

Indications and use of palliative surgery-results of society of surgical oncology survey

Background: Despite increasing attention to end-of-life care in oncology, palliative surgery (PS) remains poorly defined. A survey to test the definition, assess the extent of use, and evaluate attitudes and goals of surgeons regarding PS was devised.Methods: A survey of Society of Surgical Oncology (SSO) members.Results: 419 SSO members completed a 110-item survey. Surgeons estimated 21% of their cancer surgeries as palliative in nature. Forty-three percent of respondents felt PS was best defined based on pre-operative intent, 27% based on post-operative factors, and 30% on patient prognosis. Only 43% considered estimated patient survival time an important factor in defining PS, and 22% considered 5-year survival rate important. The vast majority (95%) considered tumor still evident following surgery in a patient with poor prognosis constituted PS. Most surgeons felt PS could be procedures due to generalized illness related to cancer (80%) or related to cancer treatment complications (76%). Patient symptom relief and pain relief were identified as the two most important goals in PS, with increased survival the least important.Conclusion: PS is a major portion of surgical oncology practice. Quality-of-life parameters, not patient survival, were identified as the most important goals of PS.

The Role of Oncology Nursing to Ensure Quality Care for Cancer Survivors: A Report Commissioned by the National Cancer Policy Board and Institute of Medicine

PURPOSE To examine the roles of oncology nurses in improving quality care for cancer survivors. DATA SOURCES A content analysis of textbooks, journals, and key documents; surveys of graduate oncology nursing programs and the Oncology Nursing Societys Survivorship Special Interest Group; review of the nursing licensure examination and oncology nursing certification; review of undergraduate and graduate nursing standards; and review of currently funded nursing research. DATA SYNTHESIS Ten critical content areas of cancer survivorship were used for the analysis: description of population of cancer survivors, primary care, short- and long-term complications, prevention of secondary cancer, detecting recurrent and secondary cancers, treatment of recurrent cancer, quality-of-life issues, rehabilitative services, palliative and end-of-life care, and quality of care. Although findings within each source indicated significant information related to the roles of nurses in caring for cancer survivors, deficits also were identified. CONCLUSIONS Review of key literature and resources suggests significant contributions by oncology nursing over the past two decades to the area of cancer survivorship. IMPLICATIONS FOR NURSING Support is needed to expand education and research to ensure quality care for future cancer survivors.

A prospective evaluation of palliative outcomes for surgery of advanced malignancies.

Background: We prospectively evaluated the effectiveness of major surgery in treating symptoms of advanced malignancies.Methods: Fifty-nine patients were evaluated for major symptoms of intent to treat and were followed up until death or last clinical evaluation. Surgeons identified planned operations before surgery as either curative or palliative and estimated patient survival time. An independent observer assessed symptom relief. A palliative surgery outcome score was determined for each symptomatic patient.Results: Surgeons identified 22 operations (37%) as palliative intent and 37 (63%) as curative intent. The median overall survival time was 14.9 months and did not differ between curative and palliative operations. Surgical morbidity was high but did not differ between palliative (41%) and curative (44%) operations. Thirty-three patients (56%) were symptomatic before surgery, and major symptom resolution was achieved after surgery in 26 (79%) of 33. Good to excellent palliation, defined as a palliative surgery outcome score >70, was achieved in 64% of symptomatic patients.Conclusions: Most symptomatic patients with advanced malignancies undergoing major operations attained good to excellent symptom relief. Outcome measurements other than survival are feasible and can better define the role of surgery in multimodality palliative care. A new outcome measure to evaluate major palliative operations is proposed.

Family caregiver burden, skills preparedness, and quality of life in non-small cell lung cancer.

PURPOSE/OBJECTIVES To describe burden, skills preparedness, and quality of life (QOL) for caregivers of patients with non-small cell lung cancer (NSCLC), and describe how the findings informed the development of a caregiver palliative care intervention that aims to reduce caregiver burden, improve caregiving skills, and promote self-care. DESIGN Descriptive, longitudinal. SETTING A National Cancer Institute-designated comprehensive cancer center in southern California. SAMPLE 163 family members or friends aged 18 years or older and identified by patients as being a caregiver. METHODS All eligible caregivers were approached by advanced practice nurses during a regularly scheduled patient clinic visit. Informed consent was obtained prior to study participation. Outcome measures were completed at baseline and repeated at 7, 12, 18, and 24 weeks. Descriptive statistics were computed for all variables, and one-way repeated-measures analysis of variance was used to test for change over time for all predictor and outcome variables. MAIN RESEARCH VARIABLES Caregiver burden, skills preparedness, psychological distress, and QOL. FINDINGS Caregivers were highly functional. Caregiver burden related to subjective demands increased significantly over time. Perceived skills preparedness was high at baseline but decreased over time. Psychological distress was moderate but increased in the study period. Overall QOL was moderate at baseline and decreased significantly over time. Psychological well-being had the worst QOL score. CONCLUSIONS Caregivers experienced high levels of caregiver burden and reported deteriorations in psychological well-being and overall QOL. IMPLICATIONS FOR NURSING Oncology nurses need to ensure that caregivers receive information that supports the caregiving role throughout the cancer trajectory. KNOWLEDGE TRANSLATION Although family caregivers are profoundly impacted by a loved ones lung cancer diagnosis, the literature about caregiver burden, skills preparedness, and QOL is limited. Current evidence suggests that family caregivers can be negatively impacted by a loved ones cancer diagnosis. Caregiver-specific support interventions are needed to eliminate the burden of caregiving in lung cancer.

Cultural considerations in education for cancer pain management

BACKGROUND Ethnicity is an important factor not only in the incidence of cancer but also in relation to symptom management. Inadequate pain management at home has been demonstrated to result in associated physical symptoms as well as great distress to patients and family. METHODS The study purpose was to evaluate a structure program to educate patients about cancer pain management. The City of Hope quality-of-life (QOL) tool was used to measure patient outcomes in the QOL domains of physical, psychological, social, and spiritual well-being. The Patient Pain Questionnaire was used to assess knowledge and beliefs about pain. RESULTS A total of 369 patients were enrolled in the study. The three largest groups, Caucasians, Hispanics, and African Americans, were compared. There were several significant differences between groups; overall; Hispanics had the worst pain and QOL outcomes. CONCLUSIONS The findings demonstrate significant differences among the three ethnic groups, which indicates a continued need for cultural considerations in patient education.

Distress and quality of life concerns of family caregivers of patients undergoing palliative surgery.

There has been limited research in the field of palliative care and even far less focus on the area of palliative surgery. Although patient needs are paramount, family caregivers require information and support at the time surrounding surgery for advanced disease. The aim of this prospective cohort study of family caregivers of patients with advanced malignancies was to measure the impact of palliative surgery on dimensions of quality of life (QOL) for these family members. Family caregivers completed assessment tools preoperatively and at approximately 3 weeks and 2 and 3 months postoperatively. Parameters of physical, psychological, social, and spiritual QOL were measured on a scale of 0 (poor) to 10 (good) using the City of Hope QOL-Family instrument. Caregivers recorded their general distress on the Distress Thermometer using a scale of 0 (none) to 10 (severe). Analysis of the data revealed that family caregivers had disruptions similar to patients in physical, psychological, social, and spiritual dimensions of QOL. Findings suggest that caregivers should be assessed for distress and QOL concerns both before and after surgery for patients with advanced malignancies. Although caregiver concerns cannot always be eradicated, resources and interventions to support family caregivers are vital to improving QOL.

The Quality of Life of Patients with Malignant Gliomas and Their Caregivers

ABSTRACT The grim prognosis that accompanies a diagnosis of a malignant glioma affects quality of life (QOL) as patients attempt to adapt to overwhelming losses. Caregivers also experience negative changes in QOL as responsibilities grow. This pilot study measured the QOL of patients with malignant gliomas prior to tumor progression and the QOL of their caregivers. It examined negative and positive factors that impacted the QOL while highlighting positive factors often overlooked in brain tumor QOL research. Standardized QOL questionnaires and focus groups were utilized. Patients experienced distress in the domains of physical, psychological, and social QOL but in all four of the QOL domains there were also positive outcomes. Caregiver data demonstrated mostly positive outcomes in the four QOL domains except for loved ones declining health and fear that the loved one would die.

Challenges and Strategies in Recruitment of Ethnically Diverse Populations for Cancer Nursing Research

PURPOSE/OBJECTIVES To describe common barriers, identify challenges for researchers, and provide strategies for recruitment and retention of ethnic minority groups for cancer nursing research. DATA SOURCES Computerized search of databases, published articles, abstracts, masters theses, and doctoral dissertations. DATA SYNTHESIS Social, economic, and cultural factors present challenges to recruitment of minorities into research. Knowing the culture of the target population, developing trust, engaging the community, and using tailored materials are strategies for recruitment and retention of minorities. CONCLUSIONS Knowledge of potential barriers and challenges to research with diverse populations provides the foundation for the development of strategies for successful recruitment of minorities in cancer nursing research. IMPLICATIONS FOR NURSING Increasing ethnic minorities in research will generate knowledge that will contribute to culturally competent cancer care.

Patient and surgeon decision making regarding surgery for advanced cancer

PURPOSE/OBJECTIVES To describe a program of research related to outcomes of palliative surgery and focus on one phase of this research involving decision making by patients and surgeons considering surgery for advanced disease. DESIGN Descriptive. SAMPLE 10 patients undergoing surgery and 3 oncology surgeons. METHODS Qualitative interviews were conducted with patients and their surgeons pre- and postoperatively. Transcripts were content analyzed to identify major themes in patient and surgeon interviews based on study questions. MAIN RESEARCH VARIABLES Decision making, palliative surgery, quality of life. FINDINGS The study findings highlight the issues of greatest concern to patients and surgeons considering palliative surgery. This phase was an important component of the overall program of palliative surgery research. CONCLUSIONS Comprehensive care for patients with advanced cancer seeks to achieve a balance of providing aggressive care, ensuring optimum symptom management, and maintaining a focus on comfort. Further study of palliative surgery as an aspect of interdisciplinary care is warranted. IMPLICATIONS FOR NURSING Patients undergoing surgery for advanced disease require expert nursing care to address quality-of-life concerns. Further research is needed in this area.