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Helping the clinician help me: Towards listening in cancer care
British Journal of Nursing
Abstract
Despite global support for the ideal of shared decision making, its enactment remains difficult in practice. The UK charity, Macmillan Cancer Support, attempted to incorporate the principles of shared decision making within a programme of distress management in Scotland. Distress management begins by completing the Distress Thermometer (DT). Although the DT is a screening tool, its function in this programme was extended to facilitate collaborative communication within a consultation. The aim of this grounded theory was to analyse the patient experience of the process. Nineteen people underwent semi-structured interviews focused on their experience of distress management. Participants were a mixed-cancer cohort aged 40-79 years. Findings were discussed in a structured manner with a further 14 service users and carers, and 19 clinical specialists in cancer. Constant comparison of all data revealed that the process of positive distress management could best be explained by reference to the core category: 'helping the clinician help me'. The emergence of this core category is detailed by situating its development within the iterative nature of the grounded theory method.
... 19 Time taken in consultation 'Time taken per consultation' had not been part of the original protocol, and previous attempts to time consultations had been quite complex. 20 The focus of this study was on consultation dynamics that required audio recording, and the research assistant also had to ensure consent and preclinic paperwork had been completed as well as postconsultation metrics too. Because we had hoped other teams would participate in the study we wanted to keep the protocol as simple as possible to minimise dropout due to complexity 21 it was decided that timing of the consultations might be a measure too far, and so it was excluded from the original protocol. ...
... The original idea for this study was conceived in collaboration with patients following a series of presentations of findings from a pilot RCT of the distress thermometer and concerns checklist. 20 Patients from this study had fed back that their consultations had qualitatively improved when clinicians used the concerns checklist. When asked to explain this in more detail they described feeling better listened to and more involved in the consultation. ...
Design
Analyst blinded, parallel, multi-centre, randomised controlled trial (RCT).
Participants
People with confirmed diagnoses of cancer (head and neck, skin or colorectal) attending follow-up consultation 3 months post-treatment between 2015 and 2020.
Intervention
Holistic needs assessment (HNA) or care as usual during consultation.
Objective
To establish whether incorporating HNA into consultations would increase patient participation, shared decision making and postconsultation self-efficacy.
Outcome measures
Patient participation in the consultations examined was measured using (a) dialogue ratio (DR) and (b) the proportion of consultation initiated by patient. Shared decision making was measured with CollaboRATE and self-efficacy with Lorig Scale. Consultations were audio recorded and timed.
Randomisation
Block randomisation.
Blinding
Audio recording analyst was blinded to study group.
Results
147 patients were randomised: 74 control versus 73 intervention.
Outcome
No statistically significant differences were found between groups for DR, patient initiative, self-efficacy or shared decision making. Consultations were on average 1 min 46 s longer in the HNA group (respectively, 17 m 25 s vs 15 min 39 s).
Conclusion
HNA did not change the amount of conversation initiated by the patient or the level of dialogue within the consultation. HNA did not change patient sense of collaboration or feelings of self-efficacy afterwards. HNA group raised more concerns and proportionally more emotional concerns, although their consultations took longer than treatment as usual.
Implications for practice
This is the first RCT to test HNA in medically led outpatient settings. Results showed no difference in the way the consultations were structured or received. There is wider evidence to support the roll out of HNA as part of a proactive, multidisciplinary process, but this study did not support medical colleagues facilitating it.
Trial registration number
NCT02274701.
... These perceptions may engender women's perceptions of the tool being a tick-box exercise. This view is supported by Snowden et al. (2012), who found that the process of delivering HNA is likely to be unsuccessful if the initial impressions patients have of it are negative. ...
Background
Physical and psychological concerns associated with a breast cancer diagnosis continue long after treatment. Macmillan Cancer Support developed an electronic Holistic Needs Assessment (eHNA) to help identify these concerns and allow a healthcare professional to address these as part of The Recovery Package.
Aims
The study aim was to understand the women’s experiences of having breast cancer, and of completing Macmillan’s eHNA as part of their care.
Methods
A qualitative approach was adopted. Semi-structured interviews were undertaken with 15 women, 12–18 months following surgical treatment for invasive breast cancer. Thematic analysis identified key themes.
Results
Four main themes were identified in relation to experiences of the eHNA, experiences of breast cancer, coping with breast cancer and the psychological effects of surviving. Perceptions towards the eHNA varied; some women viewed the eHNA as a research tool for hospital use rather than a beneficial aspect of their care. Several participants felt unable to raise their psychological concerns on the eHNA.
Conclusions
Although experiences differ, psychological issues remain a key factor for women with breast cancer, lasting long after treatment. The eHNA is not currently used to its potential or recognised by women as a tool to support their care. Further research is needed into how the eHNA can be used effectively to capture psychological concerns and determine best approaches to implementation of the tool to support individualised care.
This discussion paper presents a review of holistic needs assessment (HNA) in the care of patients with cancer. HNA entails a structured review of patient needs as articulated by the patient. This discussion then leads to a care plan grounded in issues pertinent to that patient. Despite policy guidance advocating its use, there are barriers to overcome in order to integrate HNAs into routine care. This article discusses what role communication skills and clinician confidence may have on the use of HNAs in practice, and suggests a strategy to support HNAs becoming the norm.
Strauss’ Continual Permutations of Action provides a theoretical framework for analysis in this constructivist grounded theory study that examines Australian rural nurses’ experiences of mentoring. The trajectory of cultivating and growing rural nurses is discussed in relation to the context or social world that participants exist within. Subconcepts of trajectory, namely the arc of action, trajectory phasing, trajectory projection, trajectory scheme, trajectory management and reciprocal impact are used to explain findings from Cultivating and Growing Rural Nurses: A grounded theory in order to shed light on the processual ordering of participants’ experiences of mentoring.
Saturation is mentioned in many qualitative research reports without any explanation of what it means and how it occurred. Recognizing the saturation point presents a challenge to qualitative researchers, especially in the absence of explicit guidelines for determining data or theoretical saturation. This research note examines the saturation concept in naturalistic inquiry and the challenges it presents. In particular, it summarizes the saturation process in a grounded theory study of community-based antipoverty projects. The main argument advanced in this research note is that claims of saturation should be supported by an explanation of how saturation was achieved and substantiated by clear evidence of its occurrence.
This paper demonstrates how the software package QSR‐NVivo can be used to faciitate a grounded theory approach. Recent research evidence has questioned the methodological quality of many studies that claim to utilise grounded theory. This paper argues that qualitative data analysis software can be used to encourage good quality grounded theory research by facilitating many of the key processes and characteristics associated with this approach. To achieve this, the paper identifies a number of grounded theory characteristics, common to all revisions of the methodology. It then describes the development of a recent study, which examined how people successfully maintain long‐term physical activity behaviour change. The purpose of this is to demonstrate how different functions of QSR‐NVivo may be used in conjunction with the key grounded theory characteristics. In summary, QSR‐NVivo is a powerful tool that, if used appropriately, can facilitate many aspects of the grounded theory process from the design and early sampling procedures, through to the analysis of data, theoretical development and presentation of findings.
Abstract
Background
Mentoring is often proposed as a solution to the problem of successfully recruiting and retaining nursing staff. The aim of this constructivist grounded theory study was to explore Australian rural nurses’ experiences of mentoring.
Design
The research design used was reflexive in nature resulting in a substantive, constructivist grounded theory study.
Participants
A national advertising campaign and snowball sampling were used to recruit nine participants from across Australia. Participants were rural nurses who had experience in mentoring others.
Methods
Standard grounded theory methods of theoretical sampling, concurrent data collection and analysis using open, axial and theoretical coding and a story line technique to develop the core category and category saturation were used. To cultivate the reflexivity required of a constructivist study, we also incorporated reflective memoing, situational analysis mapping techniques and frame analysis. Data was generated through eleven interviews, email dialogue and shared situational mapping.
Results
Cultivating and growing new or novice rural nurses using supportive relationships such as mentoring was found to be an existing, integral part of experienced rural nurses’ practice, motivated by living and working in the same communities. Getting to know a stranger is the first part of the process of cultivating and growing another. New or novice rural nurses gain the attention of experienced rural nurses through showing potential or experiencing a critical incidence.
Conclusions
The problem of retaining nurses is a global issue. Experienced nurses engaged in clinical practice have the potential to cultivate and grow new or novice nurses—many already do so. Recognising this role and providing opportunities for development will help grow a positive, supportive work environment that nurtures the experienced nurses of tomorrow.
The Distress Thermometer (DT) is a well validated screening tool, demonstrably sensitive and reasonably specific to the construct of distress in cancer. Its brevity makes it ideal to incorporate into a system of distress management. To ascertain how far this idea has been developed in practice, and to support future research, a literature review was undertaken. Medline, CINAHL, PsycINFO, Embase, ASSIA, British Nursing Index, AMED, CCTR, and HMIC were systematically searched. Forty studies were reviewed that examined the function of the DT alone, together with the problem list (PL), and/or other validated measures. The majority of studies validated the DT against other robust measures of distress in order to establish 'caseness' in these populations, and establish factors associated with distress. Many of the studies recommended that further research should test their findings in clinical practice. A small section of the literature focused on the clinical utility of the DT as a facilitator of consultations, and found it to have potential in this regard. It is concluded that there is enough validation research, and in line with the majority of these studies' recommendations, future research should focus on the utility of DT as part of a structured distress management programme.
For many years, discussions of the relative merits of generic and theoretical approaches to qualitative research have divided researchers while overshadowing the need to focus on addressing clinical questions. Drawing on the challenges of designing a study that explored parents' experiences of living with children with hydrocephalus, the authors of this paper argue that over-adherence to, and deliberations about, the philosophical origins of qualitative methods is undermining the contributions qualitative research could make to evidence-based health care and suggest qualitative methods should stand alone.
Creation of a platform of tools to provide information to doctors and patients should be the first step in giving patients choice about their treatment, say Glyn Elwyn and colleagues.
Patients with lung cancer frequently suffer psychological distress and guidelines in the United Kingdom recommend screening of all cancer patients for this problem. The audit investigated use of the Distress Thermometer in terms of staff adherence to locally developed guidelines, patient willingness to use the tool, its impact on referral rates to clinical psychology services and concordance between the tool and the clinical assessment.
Use of the Distress Thermometer was audited over a 3-month period in one lung cancer outpatient clinic. Referrals to clinical psychology services in response to clearly delineated referral indicators were assessed. Patient-reported outcomes were compared with practitioner assessment of need during clinical consultations to see whether the tool was measuring distress effectively.
Thirty three of 34 patients used the Distress Thermometer during the audit period. Ten reported distress levels above 4 in the emotional or family problems domains. On ten occasions, the clinical interview identified problems not elicited by the Distress Thermometer. Guidelines were adhered to by staff, and patients were offered information about local support services and referral to clinical psychology services where indicated. Whilst all patients were happy to receive written information about further sources of support, none wanted to be referred to psychological services at that time.
The Distress Thermometer is acceptable to patients with lung cancer in outpatient settings but it did not increase referrals for psychological support. Staff found it to be a useful tool in opening up communication about patient issues although it should not replace a comprehensive clinical interview.
Decision support technologies (DSTs, also known as decision aids) help patients and professionals take part in collaborative decision-making processes. Trials have shown favorable impacts on patient knowledge, satisfaction, decisional conflict and confidence. However, they have not become routinely embedded in health care settings. Few studies have approached this issue using a theoretical framework. We explained problems of implementing DSTs using the Normalization Process Model, a conceptual model that focuses attention on how complex interventions become routinely embedded in practice.
The Normalization Process Model was used as the basis of conceptual analysis of the outcomes of previous primary research and reviews. Using a virtual working environment we applied the model and its main concepts to examine: the 'workability' of DSTs in professional-patient interactions; how DSTs affect knowledge relations between their users; how DSTs impact on users' skills and performance; and the impact of DSTs on the allocation of organizational resources.
A conceptual analysis using the Normalization Process Model provided insight on implementation problems for DSTs in routine settings. Current research focuses mainly on the interactional workability of these technologies, but factors related to divisions of labor and health care, and the organizational contexts in which DSTs are used, are poorly described and understood.
The model successfully provided a framework for helping to identify factors that promote and inhibit the implementation of DSTs in healthcare and gave us insights into factors influencing the introduction of new technologies into contexts where negotiations are characterized by asymmetries of power and knowledge. Future research and development on the deployment of DSTs needs to take a more holistic approach and give emphasis to the structural conditions and social norms in which these technologies are enacted.
We draw on a systematic review of research on two-way communication between patients and health practitioners about medicines in order to determine the extent to which concordance is, or is not, being put into practice.
Six electronic databases were searched using the following categories of search terms: health care professionals, patients/consumers, medicine-taking/prescribing and communication. Articles were also identified from handsearches of journals, article reference lists and the Concordance website.
Studies published between 1991 and 2000 were included. Studies were not excluded on the basis of design, methods or language employed. Abstracts of identified articles were assessed by at least two reviewers and the full articles were assessed by one reviewer and checked by at least one other reviewer. Data on the design, analysis and relevant findings were extracted.
A total of 11 801 abstracts were reviewed and 470 full articles were retrieved. Of the 134 articles subsequently included, 116 were descriptive studies. All but 10 of the papers were written in English. There were mixed findings about the extent to which patients feel that their beliefs, experience and preferences about medicines can be shared. Doctors tend to dominate discussions in consultations, although patient participation is associated with positive outcomes. Health care professionals' behaviour can impede as well as enhance patient involvement.
There is little research that examines fundamental issues for concordance such as whether an exchange of views takes place. It is possible that interventions are needed to facilitate the development of concordance in practice.
To: (1) estimate the prevalence of clinically significant emotional distress in patients attending a cancer outpatient department and (2) determine the associations between distress and demographic and clinical variables, we conducted a survey of outpatients attending selected clinics of a regional cancer centre in Edinburgh, UK. Patients completed the Hospital Anxiety and Depression Scale (HADS) on touch-screen computers and the scores were linked to clinical variables on the hospital database. Nearly one quarter of the cancer outpatients 674 out of 3071 (22%; 95% confidence interval (CI) 20-23%) met our criterion for clinically significant emotional distress (total HADS score 15 or more). Univariate analysis identified the following statistically significant associations: age<65, female gender, cancer type and extent of disease. Multivariate analysis indicated that age<65 (odds ratio 1.41; 95% CI 1.18-1.69), female gender (odds ratio 1.58; 95% CI 1.31-1.92) and active disease (odds ratio 1.72; 95% CI 1.43-2.05) but not cancer diagnosis, were the independent predictors of clinically significant emotional distress. Services to treat distress in cancer patients should be organised to target patients by characteristics other than their cancer diagnosis.
Ultra-short screening tools involving fewer than five questions have been recommended as a simple method of detecting distress, anxiety, or depression in cancer settings. Such methods have practical appeal, but their diagnostic accuracy is unclear. A literature search limited to diagnostic validity studies of ultra-short screening in cancer settings identified 38 analyses, including 19 assessing the Distress Thermometer alone, involving a total of 6,414 unique patients. The pooled ability of ultra-short methods to detect depression was given by a sensitivity of 78.4%, a specificity of 66.8%, a positive predictive value (PPV) of 34.2%, and a negative predictive value (NPV) of 93.4%. Thus these tools were very good at excluding possible cases of depression but poor at confirming a suspected diagnosis. The pooled ability of ultra-short methods to detect anxiety was given by a sensitivity of 77.3% and a specificity of 56.6% (PPV, 55.2%; NPV, 80.25%) and for distress a sensitivity of 78.3% and a specificity of 66.5% (PPV, 59.7%; NPV, of 82.8%). Results using the Distress Thermometer alone were similar. Scores of integrated accuracy, using the Youden index and diagnostic odds ratio, suggested modest overall accuracy with least success in diagnosing anxiety disorders. Ultra-short methods were modestly effective in screening for mood disorders. Their rule-in ability was poorer than their rule-out ability. Ultra-short methods cannot be used alone to diagnose depression, anxiety, or distress in cancer patients but they may be considered as a first-stage screen to rule out cases of depression.
The Meaning of Life: A Very Short Introduction shows how centuries of thinkers — from Shakespeare and Schopenhauer to Marx, Sartre, and Beckett — have tackled the conundrum of the meaning of life. This question has become particularly problematic in modern times. There are philosophical and cultural reasons for this. Instead of addressing it head-on, we take refuge from the feelings of ‘meaninglessness’ in our lives by filling them with a multitude of different things: from football and sex, to New Age religions and fundamentalism. Are there limits to questioning the meaning of life?
Since the late 1960s Barney GLASER and Anselm STRAUSS, developers of the methodology of "Grounded Theory" have made several attempts to explicate, clarify and reconceptualise some of the basic tenets of their methodological approach. Diverging concepts and understandings of Grounded Theory have arisen from these attempts which have led to a split between its founders. Much of the explication and reworking of Grounded Theory surrounds the relation between data and theory and the role of previous theoretical assumptions. The book which initially established the popularity of GLASER's and STRAUSS' methodological ideas, "The Discovery of Grounded Theory", contains two conflicting understandings of the relation between data and theory - the concept of "emergence" on the one hand and the concept of "theoretical sensitivity" on the other hand. Much of the later developments of Grounded Theory can be seen as attempts to reconcile these prima facie diverging concepts. Thereby GLASER recommends to draw on a variety of "coding families" while STRAUSS proposes the use of a general theory of action to build an axis for an emerging theory. This paper first summarises the most important developments within "Grounded Theory" concerning the understanding of the relation between empirical data and theoretical statements. Thereby special emphasis will be laid on differences between GLASER's and STRAUSS' concepts and on GLASER's current critique that the concepts of "coding paradigm" and "axial coding" described by STRAUSS and Juliet CORBIN lead to the "forcing" of data. It will be argued that GLASER's critique points out some existing weaknesses of STRAUSS' concepts but vastly exaggerates the risks of the STRAUSSian approach. A main argument of this paper is that basic problems of empirically grounded theory construction can be treated much more effectively if one draws on certain results of contemporary philosophical and epistemological discussions and on widely accepted concepts developed in such debates. This especially refers to the critique of naïve empiricism, to the concept of hypothetical or abductive inference, to the concept of empirical content or falsifiability of statements and to the concept of corroboration.
Editor's Note. Three years ago, I invited Robert (Bob) Gephart to write a "From the Editors" column designed to help authors improve their chances of success when submitting qualitative research to AMJ. Judging from the increasing number of quali- tative studies that have been accepted and pub- lished in AMJ since that time, I would like to think that his article, "Qualitative Research and the Academy of Management Journal," has had a pos- itive impact. Continuing in this tradition, I asked Roy Sud- daby—an excellent reviewer (and author) of quali- tative research—to tackle another "big issue" that the editorial team has noticed with respect to qual- itative submissions to AMJ: overly generic use of the term "grounded theory" and confusion regard- ing alternative epistemological approaches to qual- itative research. Like Bob before him, Roy has, I believe, produced an analysis that will greatly ben- efit those who are relatively new to qualitative re- search or who have not yet had much success in getting their qualitative research published. Hope- fully, Roy's analysis will help even more authors to succeed, thus allowing AMJ and other journals to continue to increase the quality of insights pro- vided by rich qualitative studies of individual, or- ganizational, and institutional phenomena. Sara L. Rynes
The Patient Reported Outcome Measures (PROMs) Programme, which was implemented by the NHS in 2009, gives prominence to patients' views about their health. Self-reported measures of health are now being sought from all patients before and after four elective procedures--hip and knee replacement surgery, hernia repair and varicose veins surgery. This information will be used to assess changes in health and provides routine information on NHS patients' health outcomes for the first time. The information will be used to identify and reward good performance by providers; help patients to make choices and clinicians to monitor and improve quality; and inform commissioners' decisions about which services to prioritise. The aim of this article is to inform nurses about PROMs and encourage them to engage with it.
The promise of theory and model development makes grounded theory an attractive methodology to follow. However, it has been argued that many researchers fall short and only provide a detailed description of the research area or simply a quantitative content analysis rather than an explanatory model. This article illustrates how the researchers used a computer-assisted qualitative software program (CAQDAS) as a tool for moving beyond thick description of swimming coaches’ perceptions of sexual relationships in sport to an explanatory model grounded in the data. Grounded theory is an iterative process whereby the researchers move between data collection and analysis, writing memos, coding, and creating models. The nonlinear design of the selected CAQDAS program, NVIVO, facilitates such iterative approaches. Although the examples provided in this project focus on NVIVO, the concepts presented here could be applied to the use of other CAQDAS programs. Examples are provided of how the grounded theory techniques of open coding, writing memos, axial coding, and creating models were conducted within the program.
Patient-reported outcomes (PROs) are essential when evaluating many new treatments in health care; yet, current measures have been limited by a lack of precision, standardization, and comparability of scores across studies and diseases. The Patient-Reported Outcomes Measurement Information System (PROMIS) provides item banks that offer the potential for efficient (minimizes item number without compromising reliability), flexible (enables optional use of interchangeable items), and precise (has minimal error in estimate) measurement of commonly studied PROs. We report results from the first large-scale testing of PROMIS items.
Fourteen item pools were tested in the U.S. general population and clinical groups using an online panel and clinic recruitment. A scale-setting subsample was created reflecting demographics proportional to the 2000 U.S. census.
Using item-response theory (graded response model), 11 item banks were calibrated on a sample of 21,133, measuring components of self-reported physical, mental, and social health, along with a 10-item Global Health Scale. Short forms from each bank were developed and compared with the overall bank and with other well-validated and widely accepted ("legacy") measures. All item banks demonstrated good reliability across most of the score distributions. Construct validity was supported by moderate to strong correlations with legacy measures.
PROMIS item banks and their short forms provide evidence that they are reliable and precise measures of generic symptoms and functional reports comparable to legacy instruments. Further testing will continue to validate and test PROMIS items and banks in diverse clinical populations.
To use semi-structured interviews to ascertain patterns in patients' expectations of health care and the extent to which these expectations were met or not.
In health policy it is important to evaluate health services from varying perspectives including consumers'. One concept of emerging importance in this regard is that of patient expectations. Whether expectations are met or not have been found to be related to general patient satisfaction with treatment and treatment compliance. However, there is conceptual and methodological uncertainty and little informing empirical work regarding what is an 'expectation' and how it should be measured.
A qualitative study using semi-structured interviews to elicit 20 GP patients' expectations prior to their consultation. A post consultation interview gauged the extent to which these expectations had been met. SETTING AND PARTICIPANT: Twenty patients of a GP practice in Norfolk (UK).
Results suggest several different expectations, concerned with the doctor-patient interaction, the specific processes of the consultation, outcomes, and issues to do with time and space.
This research has used an innovative exploratory approach to address the expectations of GP patients and has implications for how doctors ought to manage their consultations. These results will be used to inform the development of a quantitative expectations questionnaire so as to develop a validated measure of expectations. Such an instrument has great potential to aid in health care research and practice.
The purpose of this study is to explore the social construction of cultural issues in palliative care amongst oncology nurses.
Australia is a nation composed of people from different cultural origins with diverse linguistic, spiritual, religious and social backgrounds. The challenge of working with an increasingly culturally diverse population is a common theme expressed by many healthcare professionals from a variety of countries.
Grounded theory was used to investigate the processes by which nurses provide nursing care to cancer patients from diverse cultural backgrounds.
Semi-structured interviews with seven Australian oncology nurses provided the data for the study; the data was analysed using grounded theory data analysis techniques.
The core category emerging from the study was that of accommodating cultural needs. This paper focuses on describing the series of subcategories that were identified as factors which could influence the process by which nurses would accommodate cultural needs. These factors included nurses' views and understandings of culture and cultural mores, their philosophy of cultural care, nurses' previous experiences with people from other cultures and organisational approaches to culture and cultural care.
This study demonstrated that previous experiences with people from other cultures and organisational approaches to culture and cultural care often influenced nurses' views and understandings of culture and cultural mores and their beliefs, attitudes and behaviours in providing cultural care. Relevance to clinical practice. It is imperative to appreciate how nurses' experiences with people from other cultures can be recognised and built upon or, if necessary, challenged. Furthermore, nurses' cultural competence and experiences with people from other cultures need to be further investigated in clinical practice.
Clinicians are increasingly seeking efficient methods to identify distress in cancer settings, using short screening tools with fewer than 14 items that take less than 5 minutes to complete. This article examines the value of these tools for identifying cancer-related distress, defined by semi-structured interview. An updated search, appraisal, and meta-analysis, with adjustments made for heterogeneity and underlying prevalence variations, identified 45 potentially useful short and ultra-short tools, although most were intended to help diagnose depression, with few targeted at distress (or anxiety). Very few studies attempted robust validation in cancer settings. When studies were limited to those tested against distress defined by semi-structured interview, only 6 methods had been validated, namely the Hospital Anxiety and Depression Scale (HADS; 13 studies, 14 items), the Distress Thermometer (DT; 4 studies, 1 item), a single verbal question (4 studies, 1 item), the Psychological Distress Inventory (PDI; 1 study, 13 items), combined DT and an impact thermometer (1 study, 2 items), and combined 2 verbal questions (1 study, 2 items). Comparing these 6 approaches side-by-side suggests that for screening, all tools have approximately the same accuracy. Therefore, choice of a short screening tool for distress can be based on acceptability or cost-effectiveness. Here, best evidence supports use of the DT or single verbal question. Remarkably, the overall accuracy of these single-item approaches seems comparable to that of the 14-item HADS (total score), whereas their efficiency is superior. For case-finding, data are sparse but no method seems to be entirely satisfactory. Current evidence suggests that the optimal short methods for identifying distress are 2 verbal questions or PDI. Of these approaches, the 2 verbal questions has superior efficiency. All short methods may be augmented by repeated application, an assessment of unmet needs (problem list), and clarification regarding the need for professional help. No screening tool should be seen as an alternative to careful clinical assessment and management. Despite much interest in the development of short and ultra-short tools, data on validation and implementation are currently incomplete. Nevertheless, short methods seem to be at least as successful as the HADS, although substantially more efficient and hence more acceptable, and therefore may be a suitable initial method of assessment in busy clinical settings.
Few studies have reported on the impact of screening on patient outcomes or clinical practice and research describing the implementation of psychosocial screening in rural services is scarce.
This study investigated the feasibility and utility of a psychological screening program in Australian rural oncology clinics.
A total of 83 newly diagnosed adult cancer patients, seen at one of three rural outpatient oncology clinics participated in this study.
Nineteen of forty-three (44%) participants in the screening phase scored above cut-off score on the Distress Thermometer (DT), a validated screening tool for distress in cancer patients. The DT had acceptable sensitivity (86%) and specificity (77%) as a screening tool using another validated self-report measure of psychological symptoms, the Psychological Symptoms Subscale of the Somatic and Psychological Health Report Short form, as a'gold standard'. Screening with the DT did not significantly increase the rate of referrals to psychosocial staff of distressed individuals. However, screening with the DT reduced time to referral. The screened group reported significantly greater unmet needs in univariate (P = 0.01) and multivariate analyses (P = 0.01).
Psychological screening did not increase rates of referral to psychosocial support staff for patients with psychological morbidity. However, given the methodological limitations of this pilot study, the results should be interpreted with caution. The DT was found to have acceptable sensitivity and specificity to detect likely cases of psychological morbidity. Barriers to implementation of psychological screening in rural clinics and recommendations for future psychological screening programs at outpatient oncology clinics are discussed.
The NCCN Distress Thermometer (DT) was administered to 143 women undergoing chemotherapy for gynecologic cancer over a two-year period. This report describes the frequency and character of psychological distress in this population and examines the effect of disease, treatment, and demographic variables on levels of distress.
The DT is a self-administered scale for patients to rate their level of distress from 0 to 10, where 0 represents no distress and 10 represents extreme distress. Further, patients are asked to choose from among 34 items that constitute sources of distress within the last week. All women who were undergoing their first chemotherapy treatment at the outpatient clinic at the University of Oklahoma Cancer Institute for either primary disease or recurrent disease were asked by the clinical nurses to complete the assessment prior to that first infusion.
Over half (57%) of women reported a score of 4 or greater on the DT and were then assessed by the oncology psychologist. Women who were younger than age 60 and single were more likely to be distressed. There were no associations between the type of cancer, stage of cancer, or insurance status.
A significant percentage (57%) of these women experienced distress at levels that indicate further evaluation is indicated. This study suggests that early screening and evaluation are essential in this group of cancer patients.
Factors contributing to treatment adherence are poorly understood but the physician-patient interaction is one factor that is known to affect patient adherence.
This meta-analysis systematically reviewed the published literature to determine the magnitude of the relationships between physician-patient collaboration and patient adherence.
A statistically significant weighted mean effect size of M(d)=0.145 from 48 published studies indicated better physician-patient collaboration is associated with better patient adherence. The relationship between collaboration and adherence was sustained for pediatric and adult populations, chronic and acute conditions, and primary physician and specialists.
These results emphasize the need for physician-patient collaboration within the medical consultation.
The inclusion of the patient's perspective during the consultation is essential to obtaining cooperation once the patient has left the physician's office.
To introduce a synthesised technique for using grounded theory in nursing research.
Nursing increasingly uses grounded theory for a broadened perspective on nursing practice and research. Nurse researchers have choices in how to choose and use grounded theory as a research method. These choices come from a deep understanding of the different versions of grounded theory, including Glaser's classic grounded theory and Strauss and Corbin's later approach.
Grounded theory related literature review was conducted.
This is a methodological review paper.
Nursing researchers intent on using a grounded theory methodology should pay attention to the theoretical discussions including theoretical sampling, theoretical sensitivity, constant comparative methods and asking questions, keeping memoranda diagramming, identification of a core category and a resultant explanatory theory. A synthesised approach is developed for use, based on Strauss and Corbin's style of sampling and memoranda writing, but selecting theoretical coding families, that differ from the paradigm model of Strauss and Corbin, from the wide range suggested by Glaser. This led to the development of a multi-step synthesised approach to grounded theory data analysis based on the works of Glaser, Charmaz and Strauss and Corbin.
The use of this synthesised approach provides a true reflection of Glaser's idea of 'emergence of theory from the data' and Strauss and Corbin's style of sampling and memoranda writing is employed. This multi-step synthesised method of data analysis maintains the philosophical perspective of grounded theory.
This method indicates how grounded theory has developed, where it might go next in nursing research and how it may continue to evolve.
To demonstrate how a previously described conceptual framework of physician-patient communication can inform the application of existing theory and the extension of new theory regarding the impact of patient-reported outcomes (PROs) in clinical practice.
We used a communication framework to guide interpretation of empirical results relating to three situations: Collecting PROs from individual patients, providing individual patient's PROs to his/her physician, and providing PROs from clinical trials to individual patients.
For each of the selected situations, results of empirical studies of PROs are discussed in terms of the elements of the communication framework. These influences are developed into testable hypotheses regarding the impact of PROs and alternative hypotheses explaining empirical research results. We further illustrate how the conceptual framework can be knitted to other theories of communication to enhance understanding of the use of PROs in clinical practice.
Guidance of a conceptual framework of communication can enhance understanding of PRO study results and lead to testable hypotheses about how to further improve the clinical use of PROs.
The available literature has identified Nursing Clinical Development Units as a strategy to promote, and bring about changes in, nursing practice. While the literature has also identified a number of barriers to the effectiveness of Nursing Clinical Development Units, very little of this research has been undertaken in a mental health environment. This paper presents findings from a qualitative evaluation of a Nursing Clinical Development Unit Program specifically targeted at the mental health field. In-depth interviews were conducted with participants of this program (n=14). Data analysis reveals the following barriers: not enough resources; grasping the concept; staff turnover; and staff resistance.
To update a systematic review on the barriers and facilitators to implementing shared decision-making in clinical practice as perceived by health professionals.
From March to December 2006, PubMed, Embase, CINHAL, PsycINFO, and Dissertation Abstracts were searched. Studies were included if they reported on health professionals' perceived barriers and facilitators to implementing shared decision-making in practice. Quality of the included studies was assessed. Content analysis was performed with a pre-established taxonomy.
Out of 1130 titles, 10 new eligible studies were identified for a total of 38 included studies compared to 28 in the previous version. The vast majority of participants (n=3231) were physicians (89%). The three most often reported barriers were: time constraints (22/38) and lack of applicability due to patient characteristics (18/38) and the clinical situation (16/38). The three most often reported facilitators were: provider motivation (23/38) and positive impact on the clinical process (16/38) and patient outcomes (16/38).
This systematic review update confirms the results of the original review.
Interventions to foster implementation of shared decision-making in clinical practice will need to address a range of factors.
Health services research consistently demonstrates a gap between research-based best clinical practice and what doctors actually do. Traditionally, the profession of medicine has behaved as if dissemination of research findings in peer-reviewed journals will eliminate this gap, even though professionals typically have less than 1 hour per week to read. This problem is complicated by the fact that physicians have not been trained generally to appraise published research, which is of variable quality in any event. Physicians interested in changing their practices also encounter organizational, peer group, and individual barriers at the same time as they face information overload and patient expectations. In a word, physicians' abilities to manage information is overwhelmed. This article both summarizes initiatives to improve physicians' information management through efforts to synthesize available evidence and describes the current evidence base of effectiveness and efficiency of dissemination and implementation strategies. We conclude that there is an imperfect evidence base to support decisions regarding strategies that are likely to be appropriate and effective under varying circumstances. Since this problem is compounded by the lack of a theoretical base for conceptualizing physician behavior change, we suggest exploring the applicability of behavioral theories to the understanding of professional behavior change. We also suggest exploring the use of theory-based process evaluations alongside randomized trials of dissemination and implementation strategies to further test theories and to explore causal mechanisms. Further research is required to explore determinants of provider behavior to better identify modifiable and non-modifiable effect modifiers, to develop methods of identifying barriers and facilitators to change, and to estimate the efficiency of dissemination and implementation strategies in the presence of different barriers and effect modifiers.
Novice qualitative researchers are often unsure regarding the analysis of their data and, where grounded theory is chosen, they may be uncertain regarding the differences that now exist between the approaches of Glaser and Strauss, who together first described the method. These two approaches are compared in relation to roots and divergences, role of induction, deduction and verification, ways in which data are coded and the format of generated theory. Personal experience of developing as a ground theorist is used to illustrate some of the key differences. A conclusion is drawn that, rather than debate relative merits of the two approaches, suggests that novice researchers need to select the method that best suits their cognitive style and develop analytic skills through doing research.
A study was conducted to describe our group's experience using the NCCN Distress Thermometer in an outpatient breast cancer clinic. The NCCN Distress Thermometer was administered to patients attending the breast cancer clinic at Huntsman Cancer Institute during a 4-month period. Effects of disease, treatment, and demographic variables on distress level were analyzed. Patients reporting high distress were contacted by a social worker to determine the cause of the distress. Two hundred and eighty-six (286) subjects completed 403 questionnaires, with 96 patients (34%) reporting high levels of distress (5 or greater on a 10-point scale). No relationship was seen between high distress and stage of disease, type of current treatment, time since diagnosis, age, or other demographic factors. Underlying mental health disorders were associated with a higher level of distress. The Distress Thermometer was a useful method to screen, triage, and prioritize patient interventions. In our experience, the tool promoted communication between the patient and the health care team, which enhanced treating psychosocial and physical symptoms. Methods to optimize the use of this screen are proposed.
The potential benefits of health-related quality of life (HRQL) assessment in oncology clinical practice include better detection of problems, enhanced disease and treatment monitoring and improved care. However, few empirical studies have investigated the effects of incorporating such assessments into routine clinical care. Recent randomized studies have reported improved detection of and communication about patients' concerns, but few have found effects on patient HRQL or satisfaction. This study examined whether offering interpretive assistance of HRQL results would improve these patient outcomes. Two hundred and thirteen participants with metastatic breast, lung or colorectal cancer were randomly assigned to one of three conditions: usual care; HRQL assessment or HRQL assessment followed by a structured interview and discussion. Interviews about patients' assessment responses were conducted by a research nurse, who then presented HRQL information to the treating nurse. HRQL and treatment satisfaction outcomes were assessed at 3 and 6 months. No significant differences were found between study conditions in HRQL or satisfaction. Results suggest that routine HRQL assessment, even with description of results, is insufficient to improve patient HRQL and satisfaction. It is suggested that positive effects may require supplementing assessment results with specific suggestions for clinical management changes.
This paper is a report of a discussion of the arguments surrounding the role of the initial literature review in grounded theory.
Researchers new to grounded theory may find themselves confused about the literature review, something we ourselves experienced, pointing to the need for clarity about use of the literature in grounded theory to help guide others about to embark on similar research journeys.
The arguments for and against the use of a substantial topic-related initial literature review in a grounded theory study are discussed, giving examples from our own studies. The use of theoretically sampled literature and the necessity for reflexivity are also discussed. Reflexivity is viewed as the explicit quest to limit researcher effects on the data by awareness of self, something seen as integral both to the process of data collection and the constant comparison method essential to grounded theory.
A researcher who is close to the field may already be theoretically sensitized and familiar with the literature on the study topic. Use of literature or any other preknowledge should not prevent a grounded theory arising from the inductive-deductive interplay which is at the heart of this method. Reflexivity is needed to prevent prior knowledge distorting the researcher's perceptions of the data.
Holistic common assessment of supportive and palliative care needs for adults with cancer
- A Richardson
- B Tebbit
- J Sitzia
- V Brown