[Show abstract][Hide abstract] ABSTRACT: To identify priority areas of research for the Oncology Nursing Society (ONS) Research Agenda for 2014-2018, consistent with ONS's mission to promote excellence in oncology nursing and quality cancer care.
Review of the literature, 2013 ONS Research Priorities Survey, National Institute of Nursing Research, and the National Cancer Institute research foci.
Multimethod consensus-building approach by content leaders and content experts of the ONS Research Agenda Project Team.
The 2014-2018 Research Agenda Project Team identified eight high-priority research areas.
The Research Agenda is a synthesis of the state of the science in cancer and identifies gaps and directions for the conduct and dissemination of research. Oncology nurses can use the agenda to inform clinical practice, develop research proposals, inform policy makers, support interdisciplinary research efforts, and promote scientist and clinician collaborations in targeted patient-centered research.
Oncology Nursing Forum 09/2015; 42(5):450-65. DOI:10.1188/15.ONF.450-465 · 2.79 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Longitudinal research is well suited for investigating phenomena that change over time. With the growing acceptance of mixed methods, researchers are combining qualitative and quantitative approaches within longitudinal research. However, little attention has been paid to how researchers integrate longitudinal mixed methods databases. The purpose of this methodological review was to describe how researchers combine mixed methods and longitudinal approaches in practice and delineate dimensions and issues inherent within these complex designs. We examined published empirical studies from the health sciences that self-identified as longitudinal and mixed methods. Our results identify major dimensions, variations, and issues for designing longitudinal mixed methods research and suggest recommendations for researchers interested in using this complex approach.
Journal of Mixed Methods Research 01/2014; 9(4). DOI:10.1177/1558689814543563 · 1.91 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: The embedded approach is a mixed methods design that is most commonly used when qualitative methods are embedded within intervention designs such as randomized clinical trials (RCTs). Scholars have noted challenges associated with embedded procedures and expressed concern that embedded designs undervalue and underutilize interpretive qualitative approaches. This article examines these issues in the context of a study about cancer pain management where qualitative methods were embedded within an RCT design. We describe our practices for stating embedded research questions, designing embedded qualitative data collection within the constraints of the RCT, and developing enriched understandings of the RCT through an interpretive qualitative analysis. These practices provide guidance for intervention researchers planning to embed qualitative components within RCT designs.
Journal of Mixed Methods Research 07/2013; 7(3):219-242. DOI:10.1177/1558689812474372 · 1.91 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Abstract While patients with advanced cancer experience a wide range of symptoms, no work has been done to determine an optimal cutpoint for a low versus a high number of symptoms. Analytic approaches that established clinically meaningful cutpoints for the severity of cancer pain and fatigue provided the foundation for this study. The purpose of this study was to determine the optimal cutpoint for low and high numbers of symptoms using a range of potential cutpoints and to determine if those cutpoints distinguished between the two symptom groups on demographic and clinical characteristics and depression, anxiety, and quality of life (QOL). Patients with advanced cancer (n=110) completed a symptom assessment scale, and measures of depression, anxiety, and QOL. Combinations of cutpoints were tested to yield one- and two-cutpoint solutions. Using analysis of variance for QOL scores, the F-ratio that indicated the highest between-group difference was determined to be the optimal cutpoint between low and high number of symptoms. A cutpoint of ≤12 symptoms (i.e., 0-12 is low, 13-32 is high) was the optimal cutpoint for total number of symptoms. Significant differences in depression, anxiety, and QOL scores validated this cutpoint. Psychological symptoms had higher occurrence rates in the high symptom group. Findings suggest that a threshold exists between a low and a high number of symptoms in patients with advanced cancer. Psychological symptoms were significantly different between patients in the low versus high symptom groups and may play an important role in QOL outcomes in patients with advanced cancer.
Journal of palliative medicine 08/2012; 15(9):1027-36. DOI:10.1089/jpm.2012.0045 · 1.91 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: The decade from 2000 to 2010 was an era of tremendous growth in family caregiving research specific to the cancer population. This research has implications for how cancer family caregiving is conceptualized, yet the most recent comprehensive model of cancer family caregiving was published ten years ago. Our objective was to develop an updated and expanded comprehensive model of the cancer family caregiving experience, derived from concepts and variables used in research during the past ten years.
A conceptual model was developed based on cancer family caregiving research published from 2000 to 2010.
Our updated and expanded model has three main elements: 1) the stress process, 2) contextual factors, and 3) the cancer trajectory. Emerging ways of conceptualizing the relationships between and within model elements are addressed, as well as an emerging focus on caregiver-patient dyads as the unit of analysis.
Cancer family caregiving research has grown dramatically since 2000 resulting in a greatly expanded conceptual landscape. This updated and expanded model of the cancer family caregiving experience synthesizes the conceptual implications of an international body of work and demonstrates tremendous progress in how cancer family caregiving research is conceptualized.
European journal of oncology nursing: the official journal of European Oncology Nursing Society 10/2011; 16(4):387-98. DOI:10.1016/j.ejon.2011.09.001 · 1.43 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Head and neck cancer (HNC) survivors often exhibit late symptoms or adverse effects of treatment that may severely disrupt their ability to speak, eat, breathe, and associate with others. Research has focused on survival and quality of life associated with treatment and/or stage of cancer. Although research shows communication problems in 50% of survivors, few studies have assessed functional speech, and none describe HNC survivor perspectives on speech or communication more broadly.
The purpose of this study was to describe survivors' experience of communication during and after treatment.
A phenomenological, descriptive, and interpretive research method was used to study 39 HNC survivors. Interviews included open-ended questions about their communication experiences. Researchers conducted line-by-line coding, identified theme labels, and compared themes in all interviews. Procedures to ensure scientific rigor included data validation and consensus.
Intertwined positive/negative aspects of communication were described. Two major themes were identified: "change in communication," which included functional aspects of communication, and "going deeper into life," which included the positive aspects of the process.
This study is the first to describe day-to-day communication experiences from the perspective of HNC survivors. The deeply personal aspects of communication included functional and existential themes far beyond the ability to speak. For these participants, deeper change came from their experience and was carried forward in their lives.
Survivors benefited from support and understanding offered by family, friends, and healthcare professionals. This difficult situation served as a catalyst for deeper human change.
Cancer nursing 07/2011; 35(2):126-32. DOI:10.1097/NCC.0b013e31821bd054 · 1.97 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: A large number of oncology patients with bone metastasis report significant and often unrelieved pain that is associated with reduced quality of life and impaired functional status. Our research team previously assessed the efficacy of a tailored self-care psychoeducational intervention to improve pain management in these patients. Samplewide analyses demonstrated improvements in pain intensity and analgesic prescriptions. However, substantial interindividual variability was observed within the intervention group. In the current paper, hierarchical linear modeling (HLM) was used to determine factors that contributed to variability in pain intensity and analgesic prescription and intake in the sample of patients who participated in the intervention. Specifically, HLM analyses identified demographic, clinical, and psychological characteristics that predicted variation in pain intensity and analgesic prescription and intake at baseline (intercepts) and over the course of the 6-week study (trajectories). Awareness of these predictors may be particularly useful for the identification of patients who would benefit most from this type of intervention. Furthermore, these findings highlight specific aspects of the intervention that may be modified in order to further improve pain management in these patients. PERSPECTIVE: This paper describes the application of HLM to explain interindividual variability in pain and analgesic outcomes among oncology outpatients with metastatic bone pain who participated in a psychoeducational intervention to improve pain management. Findings identify particularly responsive subgroups, areas for improvement to the intervention, and targets for future intervention.
The journal of pain: official journal of the American Pain Society 03/2011; 12(6):652-66. DOI:10.1016/j.jpain.2010.12.003 · 4.01 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: A large proportion of oncology outpatients with bone metastasis report unrelieved pain that significantly interferes with daily functioning and quality of life. However, little is known about the longitudinal pattern of pain intensity and analgesic prescriptions or use. Moreover, despite considerable advantages, the use of sophisticated statistical techniques, such as hierarchical linear modeling (HLM) has not been applied to the study of pain and analgesic outcomes. In a prospective longitudinal study, HLM was used to explore predictors of pain intensity and analgesic prescription and intake at the time of enrollment into the study (intercept) and over the course of 6 weeks (trajectory) in a sample of oncology outpatients with bone metastasis who received standard care for pain. In addition to corroborating known predictors of pain intensity, previously unrecognized variables were found that appear to affect both pain and analgesic outcomes. Importantly, some of the predictors of the trajectories of pain intensity and analgesic use (ie, pain-related distress and Pain Management Index (PMI) scores) are particularly amenable to interventions. Findings from this study suggest that sophisticated statistical modeling can be used in pain research to identify individual risk factors and propose novel targets that can be used to improve pain management in oncology outpatients with bone metastasis. PERSPECTIVE: Findings from this study suggest that a large amount of inter-individual variability exists in patients' experiences with cancer pain and analgesic use. Future studies need to elucidate the mechanisms that underlie these differences.
The journal of pain: official journal of the American Pain Society 02/2011; 12(4):495-507. DOI:10.1016/j.jpain.2010.10.015 · 4.01 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Aims:
The growth of highly specialized cancer centers in urban areas has expanded the availability of cutting-edge treatment. However, in sparsely populated rural areas, patients and family caregivers may have to drive long distances to access such treatment, thus facing unique travel-related challenges that have not been described in research. Therefore, the aim of this study was to describe the experiences of rural-dwelling family caregivers who travelled with patients to a distant cancer center for treatment.
This was a descriptive qualitative study. The sample consisted of 17 family caregivers of head and neck cancer patients who lived more than 100 miles from their primary cancer treatment center. Caregivers participated in semi-structured interviews that covered twelve domains of caregiving, such as symptom management, nutrition, medications, etc. Interviews were audio-taped, transcribed, and analyzed using case summaries, line-by-line coding, memo-writing, and identification of themes.
Two broad themes will be described. (1) “Caregiving in the car,” includes adapting familiar activities, like stopping for meals and restroom breaks; performing hands-on procedures, like administering insulin for the first time; and managing emergencies, like tracheal occlusion. (2) “Caregiving in temporary living quarters,” includes making a room a home; providing care in a motel environment; and maintaining emotional well-being while separated from one’s usual social network.
Knowledge about family caregiving when long-distance car travel is involved contributes to nursing science about cancer care in rural populations. Nurses need to assist rural family caregivers in adapting care for non-traditional environments, such as cars, trucks, and motels.
CANS 2010 State of the Science Congress on Nursing Research; 09/2010
[Show abstract][Hide abstract] ABSTRACT: In a sample of family caregivers (FCs) of patients with prostate cancer who were to begin radiation therapy (RT), the purposes were to determine the prevalence and severity of depression, anxiety, pain, sleep disturbance, and fatigue; determine the relationships among these symptoms and between these symptoms and functional status and quality of life (QOL); evaluate for differences in functional status and QOL between FCs with low and high levels of these symptoms; and determine which factors predicted FCs' functional status and QOL.
FCs were recruited before patients initiated RT and completed self-report questionnaires that evaluated demographic characteristics, symptoms, functional status, and QOL.
Sixty female FCs participated in the study. On the basis of established cut point scores for each symptom questionnaire, 12.2% of the FCs had clinically meaningful levels of depression, 40.7% anxiety, 15.0% pain, 36.7% sleep disturbance, 33.3% morning fatigue, and 30.0% evening fatigue. FCs who were older and who had lower levels of state anxiety and higher levels of depression, morning fatigue, and pain reported significantly poorer functional status (R(2) = 38.7%). FCs who were younger, had more years of education, were working, and who had higher levels of depression, morning fatigue, sleep disturbance, and lower levels of evening fatigue reported significantly lower QOL scores (R(2) = 70.1%).
A high percentage of FCs experienced clinically meaningful levels of a variety of symptoms. These symptoms have a negative impact on the FCs' functional status and QOL.
[Show abstract][Hide abstract] ABSTRACT: Previously, we demonstrated, in a randomized clinical trial, the effectiveness of a psychoeducational intervention to decrease pain intensity scores and increase patients' knowledge of cancer pain management with a sample of oncology patients with pain from bone metastasis. In the present study, we evaluated for changes in mood states (measured using the Profile of Mood States), quality of life (QOL; measured using the Medical Outcomes Study Short Form-36 (SF-36)), and pain's level of interference with function (measured using the Brief Pain Inventory (BPI)) from baseline to the end of the intervention first between the intervention and the standard care groups and then within the intervention group based on the patients' level of response to the intervention (i.e., patients were classified as non-responders, partial responders, or responders). No differences were found in any of these outcome measures between patients in the standard care and intervention groups. However, when patients in the intervention group were categorized using a responder analysis approach, significant differences in the various outcome measures were found among the three respondent groups. Differences in the physical and mental component summary scores on the SF-36 and the interference items on the BPI, among the three respondent groups, were not only statistically significant but also clinically significant. The use of responder analysis in analgesic trials may help to identify unique subgroups of patients and lead to the development of more effective psychoeducational interventions.
[Show abstract][Hide abstract] ABSTRACT: An understanding of the relationship between the type of analgesic prescription and the prevalence and severity of side effects is crucial in making appropriate treatment decisions. The purposes of this study were to determine if there were differences in the prevalence of side effects among four different types of analgesic prescriptions (i.e., no opioid, only an as needed (PRN) opioid, only an around-the-clock (ATC) opioid, or an ATC+PRN opioid); to determine if there were differences in the severity of side effects among the four prescription groups; and to determine the relationships between the total dose of opioid analgesic medication prescribed and taken and the severity of side effects. As part of a larger study, 174 cancer patients with bone metastasis reported their analgesic use and the prevalence and severity of 11 side effects. Significant differences (P<0.05) were found in prevalence rates for seven of the side effects among the four prescription groups. The highest prevalence rates were found in the only ATC and ATC+PRN groups. Significant differences were found in the severity scores for five of the side effects, with the highest severity scores reported by patients in the only ATC and ATC+PRN groups. Significant positive correlations were found between the severity of six of the side effects and the total dose of opioid prescribed and taken. Risk factors for analgesic-induced side effects are ATC and ATC+PRN prescription types and higher doses of opioid analgesics.
Journal of Pain and Symptom Management 02/2007; 33(1):67-77. DOI:10.1016/j.jpainsymman.2006.07.011 · 2.80 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: To evaluate the effectiveness of a psychoeducational program (i.e., PRO-SELF Pain Control Program) compared to standard care in increasing patients' knowledge regarding cancer pain management.
Randomized clinical trial.
Seven outpatient settings in northern California.
174 outpatients with cancer and pain from bone metastasis.
Following randomization into either the PRO-SELF or standard care group, patients completed the Pain Experience Scale (PES) prior to and at the completion of the intervention.
Total and individual item scores on the PES.
Total PES knowledge scores increased significantly in the PRO-SELF group (21%) compared to the standard care group (0.5%). Significant improvements in knowledge scores for patients in the PRO-SELF group were found on five of the nine PES items when compared to baseline scores.
The PRO-SELF Pain Control Program was an effective approach to increase patients' knowledge of cancer pain management.
The use of a structured paper-and-pencil questionnaire, such as the PES, as part of a psychoeducational intervention provides an effective foundation for patient education in cancer pain management. Oncology nurses can use patients' responses to this type of questionnaire to individualize the teaching and to spend more time on the identified knowledge deficits. This individualized approach to education about pain management may save staff time and improve patient outcomes.
Oncology Nursing Forum 12/2004; 31(6):1137-43. DOI:10.1188/04.ONF.1137-1143 · 2.79 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: While chronic pain is experienced by approximately 50-90% of patients with metastatic cancer, little is known about sex differences in chronic cancer pain. Therefore, the purposes of this study, in a sample of oncology outpatients (n=187) who were experiencing pain from bone metastasis, were: 1) to determine if there were sex differences in various pain characteristics, including pain intensity, and 2) to determine if there were sex differences in the prescription and consumption of analgesic medications. No significant sex differences were found in any of the baseline pain characteristics. In addition, no significant sex differences were found in analgesic prescriptions or intake of analgesic medications. Of note, men reported significantly higher pain interference scores for sexual activity than women. The study findings are important because they suggest that, unlike in acute pain, sex may not influence patients' perceptions of and responses to chronic cancer pain.
Journal of Pain and Symptom Management 10/2004; 28(3):225-32. DOI:10.1016/j.jpainsymman.2003.12.013 · 2.80 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: This randomized clinical trial tested the effectiveness of the PRO-SELF Pain Control Program compared with standard care in decreasing pain intensity scores, increasing appropriate analgesic prescriptions, and increasing analgesic intake in oncology outpatients with pain from bone metastasis.
Patients were randomly assigned to the PRO-SELF intervention (n = 93) or standard care (n = 81). Patients in the standard care arm were seen by a research nurse three times and were called three times by phone between the home visits. PRO-SELF group patients were seen by specially trained intervention nurses and received a psychoeducational intervention, were taught how to use a pillbox, and were given written instructions on how to communicate with their physician about unrelieved pain and the need for changes in their analgesic prescriptions. Patients were coached during two follow-up home visits and three phone calls on how to improve their cancer pain management.
Pain intensity scores decreased significantly from baseline (all P <.0001) in the PRO-SELF group (ie, least pain, 28.4%; average pain, 32.5%; and worst pain, 27.0%) compared with the standard care group (ie, least increased by 14.6%, average increased by 1.9%, and worst decreased by 1.2%). The percentage of patients in the PRO-SELF group with the most appropriate type of analgesic prescription increased significantly from 28.3% to 37.0% (P =.008) compared with a change from 29.6% to 32.5% in the standard care group.
The use of a psychoeducational intervention that incorporates nurse coaching within the framework of self-care can improve the management of cancer pain.
[Show abstract][Hide abstract] ABSTRACT: To describe the PRO-SELF(c): Pain Control Program, an educational approach that provides patients and family caregivers with the knowledge, skills, and nursing support needed to improve pain relief.
Published research studies, articles, and conference abstracts.
Patients with cancer and family caregivers lack knowledge about pain management and side effects. Engaging in self-care behaviors improves patients' health outcomes.
The PRO-SELF: Pain Control Program is an effective approach that can be used to help patients with cancer and their family caregivers obtain the knowledge and skills that are needed to manage pain. Three key strategies for delivering the PRO-SELF program are (a) provision of information using academic detailing, (b) skill building with ongoing nurse coaching, and (c) interactive nursing support.
Adequate pain relief is vital to decreasing cancer morbidity and improving patients' quality of life. The PRO-SELF: Pain Control Program should be implemented in all settings where cancer care takes place.
Oncology Nursing Forum 01/2003; 30(1):65-73. DOI:10.1188/03.ONF.65-73 · 2.79 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Around-the-clock (ATC) dosing of opioid analgesics is the established approach for the management of chronic cancer pain. The purposes of this study were to determine whether there were differences in pain intensity scores and pain duration between oncology outpatients who were taking opioid analgesics on an around-the-clock (ATC) compared with an as needed (PRN) basis and to determine differences in opioid prescription and consumption between the 2 groups during a period of 5 weeks. Oncology patients (n = 137) with pain from bone metastasis were recruited from 7 outpatient settings. Patients completed a demographic questionnaire and on a daily basis recorded pain intensity scores and medication intake in a diary. No significant differences in average, least, or worst pain intensity scores or number of hours per day in pain were found between the 2 groups. However, the average total opioid dose, prescribed and taken, was significantly greater for the ATC group than for the PRN group. These findings suggest the need for further investigations in the following areas: the appropriate treatments for pain related to bone metastasis, the use of various pain measures to evaluate the effectiveness of analgesic medications, and the need to evaluate how analgesics are prescribed and titrated for patients with cancer-related pain.
Journal of Pain 03/2002; 3(1):12-20. DOI:10.1054/jpai.2002.27002 · 4.01 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: To evaluate oncology outpatients' level of adherence to their analgesic regimen during a 5-week period.
A random sample of 65 adult oncology outpatients with a Karnofsky performance status score of >or= 50, an average pain intensity score of >or= 2.5, and radiographic evidence of bone metastasis were recruited for this longitudinal study from seven outpatient settings. On a daily basis, patients rated their level of pain intensity and recorded pain medication intake. Adherence rates for opioid analgesics prescribed on an around-the-clock (ATC) and on an as-needed (PRN) basis were calculated on a weekly basis.
Overall adherence rates for ATC opioid analgesics ranged from 84.5% to 90.8% and, for PRN analgesics, from 22.2% to 26.6%. No significant differences over time were found in either of these adherence rates.
One factor that seems to contribute to ineffective cancer pain management is poor adherence to the analgesic regimen.
Journal of Clinical Oncology 12/2001; 19(23):4275-9. · 18.43 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Families increasingly are expected to provide complex care at home to ill relatives. Such care requires a level of caregiving knowledge and skill unprecedented among lay persons, yet family caregiving skill has never been formally developed as a concept in nursing. The purpose of the study reported here was to develop the concept of family caregiving skill systematically through qualitative analysis of interviews with patients (n = 30) receiving chemotherapy for cancer and their primary family caregivers (n = 29). Open coding and constant comparison constituted the analytic methods. Sixty-three indicators of caregiving skill were identified for nine core caregiving processes. Family caregiving skill was defined as the ability to engage effectively and smoothly in these nine processes. Properties of family caregiving skill also were identified. Conceptualizing skill as a variable and identifying indicators of varying levels of skill provides a basis for measurement and will allow clinicians to more precisely assess family caregiving skill.
Research in Nursing & Health 07/2000; 23(3):191-203. DOI:10.1002/1098-240X(200006)23:33.0.CO;2-B · 1.27 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: To review progress in the conceptualization and measurement of five concepts related to doing family caregiving well: caregiving mastery, self-efficacy, competence, preparedness, and quality. Families are increasingly involved in providing complex care to ill or aged family members at home. Their ability to do caregiving well is vitally important and a focus of nursing practice in many clinical settings.
Concepts were organized into two groups: those that refer to caregivers' perceptions of how well they are providing care and those that refer to professional assessment of the quality of care provided.
Family caregiving literature from nursing, gerontology, psychology, and social work, 1987-1996.
There is growing interest in doing family caregiving well. However, research in this area is limited by the current state of development of ideas and measures.
Two issues that should be addressed to advance research are the perspective taken on doing caregiving well and change over time in doing caregiving well.
Image--the journal of nursing scholarship 03/1998; 30(1):63-9.