Subjective Experience Of Patients Research Articles

“How do you live without a stomach?”: A multiple case study examination of total gastrectomy for palliation or prophylaxis

The number of diagnosed cases of stomach cancer in Western countries is relatively small compared to prevalence rates in Eastern populations. This disparity creates a general lack of information and understanding of the experience of patients treated for this disease in North America. Surgical removal of the stomach, also called total gastrectomy (TG), is presently the only curative treatment available to patients with stomach cancer. Considering the impact such a procedure may have, very little is known about what factors influence an individual's postsurgical quality of life (QL). This article reviews current literature and examines three unique case studies. Semi-structured interviews were analyzed using content analysis, a qualitative analytic approach for reporting combined subject responses. Participants included one 37-year-old man with multiple polyps in his stomach and a family history of stomach cancer, one 18 year-old man with a confirmed CDH1 mutation and a family history of stomach cancer, and one 33-year-old man with confirmed metastatic gastric adenocarcinoma. Subjective patient experience was categorized into: (1) making the decision, (2) treatment impact, and (3) life after TG. Prior to surgery, all patients carefully evaluated their perceived risk compared to the treatment consequences and indicated that a certain event triggered their decision. The largest treatment impacts were learning to eat again and adjusting to the physical changes. Each patient endorsed that their experience made them appreciate and make the most of life. This currently represents the only study to investigate the lived experience of TG for prophylaxis or palliation in individuals with and without genetic risk for stomach cancer. Understanding this process will allow all members of the cancer care team, and the patients themselves, to better understand the factors involved in decision making and postoperative adjustment. Fruitful avenues for future research are discussed.

Management of Nausea, Vomiting, and Diarrhea During Critical Illness

Symptoms are subjective patient experiences that may negatively impact the patient’s hospitalization, treatment plan, and quality of life. Critically ill patients frequently experience nausea, vomiting, and diarrhea related to underlying disease, procedures, and medical interventions (eg, medication, enteral feeding, surgery). Optimally, the nurse performs a subjective assessment that explores the patient’s perception and impact of these symptoms to develop a comprehensive plan of care. Unfortunately, little evidence is available to guide assessment of nausea, vomiting, and diarrhea in critically ill nonverbal patients. Understanding the disease processes, medical treatments, and pathophysioglogy of these symptoms will assist the critical care nurse in the anticipation of symptoms and development of a proactive plan to alleviate the symptom-associated discomfort.

Validación de la versión en castellano de la Escala del Bienestar Subjetivo con Neurolépticos (SWN-K) en pacientes con esquizofrenia

Background and objectiveThe subjective experience of patients with psychoses towards neuroleptic treatment is a key factor in medication adherence, quality of life, and clinical outcome. The aim was to achieve a linguistic adaptation and psychometric validation into Spanish of the Subjective Well-being under Neuroleptic Scale (SWN-K) among patients with schizophrenia. Material and methodCross-sectional validation study conducted in two phases (cultural adaptation into Spanish and psychometric validation) in clinically stable patients under antipsychotic treatment. Feasibility and reliability were explored. ResultsA total of 97 patients were included. Most patients were male (72%), with mean age of 35 years (SD=10). The SWN-K showed a good acceptability. SWN-K total score Cronbach's α was 0.86. The SWN-K total score test-retest reliability was 0.88 (95% CI=0.84 to 0.93). The SWN-K discriminated among CGI-S levels (one-way ANOVAS P<0.01), showing a linear trend (P<0.001). ConclusionsThe Spanish version of the SWN-K is feasible, reliable, and appropriated as a patient-reported outcome to evaluate patients’ subjective well being under treatment.

Coercion in Psychiatric Care: Systematic Review of Correlates and Themes

Objective: This study systematically examined the empirical literature on the themes and correlates of coercion as defined by the subjective experience of patients in psychiatric care. Methods: The study was a systematic review of the literature on coercion as covered in MEDLINE, PsycINFO, and CINAHL. From qualitative studies, themes that the authors identified were extracted. From quantitative studies, correlational and outcome data were extracted. Results: The final analysis included 27 articles. Themes related to perceived coercion were almost all negative. Correlation and outcome data were insufficiently homogeneous to allow meaningful combined statistical analysis. There was no strong quantitative evidence that the experience of coercion is negatively or positively associated with psychopathology or general well-being. Conclusions: Coercion was commonly felt by patients as dehumanizing. Compulsory actions likely to increase perceived coercion had mixed correlates, and it was therefore difficult to predict who is at greatest risk of experiencing coercion as a “side effect” of intervention. Clinicians should routinely consider that all patients have the potential to experience an intervention as coercive. (Psychiatric Services 62:465–470, 2011)

Coercion in Psychiatric Care: Systematic Review of Correlates and Themes

This study systematically examined the empirical literature on the themes and correlates of coercion as defined by the subjective experience of patients in psychiatric care. The study was a systematic review of the literature on coercion as covered in MEDLINE, PsycINFO, and CINAHL. From qualitative studies, themes that the authors identified were extracted. From quantitative studies, correlational and outcome data were extracted. The final analysis included 27 articles. Themes related to perceived coercion were almost all negative. Correlation and outcome data were insufficiently homogeneous to allow meaningful combined statistical analysis. There was no strong quantitative evidence that the experience of coercion is negatively or positively associated with psychopathology or general well-being. Coercion was commonly felt by patients as dehumanizing. Compulsory actions likely to increase perceived coercion had mixed correlates, and it was therefore difficult to predict who is at greatest risk of experiencing coercion as a "side effect" of intervention. Clinicians should routinely consider that all patients have the potential to experience an intervention as coercive.

Patients’ experiences of high-dose-rate brachytherapy boost for prostate cancer using an inpatient protocol

Purpose High-dose-rate (HDR) brachytherapy is an invasive and anxiety-provoking procedure. We sought to determine the subjective experience of patients undergoing inpatient treatment. Methods and materials Men undergoing HDR prostate brachytherapy at Royal Prince Alfred and St George Hospitals were invited to complete a questionnaire (the Prostate Brachytherapy Questionnaire) for 3 days to assess their perceptions and attitudes during the brachytherapy treatment. Results Fifty-eight eligible men participated. The aspects rated that the most troublesome were “ being stuck in bed” and “ discomfort,” with mean scores (0–10) over 3 days of 4.2 and 3.8, respectively; 44% and 34% of men rated these aspects of the procedure as severe (score 7 or more) at any time. The whole experience was rated as mildly troublesome (mean score over 3 days = 3.2). The overall experience was rated better than expected by most men (60%), and only 9% found it worse than expected. Conclusions By using the Prostate Brachytherapy Questionnaire, the patients provided our centers with subjective feedback of the procedure from a consumer’s perspective, enabling us to customize and enhance current educational interventions before treatment, to provide patients with a better understanding of the treatment experience, and to ensure continued support for the patients. These results have prompted us to modify the HDR boost to two fractions, and, at one of the centers, to perform them on an outpatient basis.

“I've not asked him, you see, and he's not said”: understanding lay explanatory models of illness is a prerequisite for concordant consultations

AbstractMethodAn extended qualitative analysis of a single case.ObjectiveTo illustrate the complexity of patients' explanatory models and their significance in underpinning experience of illness and response to disease.Key findingsThe case demonstrates how lack of professional awareness and understanding of patient models limits the capacity to provide effective health care and reduces patients' ability to cope with the experience of illness or to participate constructively in the management of disease. The distance between patients and health professionals is likely to increase, as also is the rate of “non-compliance”, if laypeople continue to become increasingly well informed outside the consulting room, but retain the traditional role of passive and acquiescent patient within it. Concordant consultations are characterised by attention to the patient's illness as well as disease. It is not enough that technical issues and disease problems should be dealt with. The patient's subjective experience of symptoms, and the personal significance of his or her illness should be set out. The interpretation of meaning should be a collaborative endeavour involving both doctor and patient. Increased professional awareness of patient models of illness and associated concerns could be an important lever in changing the culture of the consultation.ConclusionConcordance offers a way of developing a more equal and meaningful relationship between patients and professionals and of generating more positive outcomes in medical consultations as a result.

Development and validation of the Drug Hypersensitivity Quality of Life Questionnaire

The impact of drug hypersensitivity has never been considered from the patient's perspective, and no questionnaire is currently available for this purpose. To develop and validate a questionnaire specifically designed for the assessment of quality of life in patients with drug hypersensitivity entitled the Drug Hypersensitivity Quality of Life Questionnaire (DrHy-Q). During the development procedure, an initial questionnaire of 34 items was generated and administered to 70 patients; the 20 most important items were detected and converted into questions evaluated with a 5-point Likert scale. This provisional questionnaire then underwent a validation procedure to assess its psychometric properties. The DrHy-Q and the Psychological General Well-Being Index (PGWBI) were completed by 365 patients (67.5% female; mean [SD] age, 40 [15] years). Statistical analysis revealed a 1-dimensional structure for the DrHy-Q that explained up to 50.7% of the total variance and showed good levels of internal consistency for the extracted factor (Cronbach α = 0.928). The correlations between the DrHy-Q and the PGWBI scores were low. However, the DrHy-Q scores of patients who experienced anaphylactic shock were significantly higher than the scores from patients with other reactions (analysis of variance; F = 5.991; df = 4; P < .001). The test-retest associations were good (R = 0.995; P < .001). DrHy-Q met the standards for construct validity, internal consistency, and reliability, indicating that it is appropriate for use alone or in combination with other patient-reported outcome questionnaires to explore the subjective experiences of patients with drug hypersensitivity.

Perception of Sleep and Dreams in Alcohol-Dependent Patients during Detoxication and Abstinence

This study aims to investigate sleep quality and the subjective dream experience in alcohol-dependent patients during withdrawal and abstinence compared with healthy controls. Thirty-seven patients with alcohol dependency and 35 healthy control subjects were asked to fill in several questionnaires and to give information about their subjective sleep and dream experiences. Twelve patients participated in a follow-up interview 4 weeks later. Sleep quality is impaired in alcohol-dependent patients during detoxication, and the subjective dream experience is more negatively toned compared with healthy controls. Both sleep quality and dream experience improves slightly after 4 weeks of abstinence. Patients with alcohol dependency during withdrawal and abstinence dream significantly more often about alcohol. However, none of the abstinent alcohol-dependent patients dreamed about alcohol during withdrawal. This study shows that the subjective sleep and dream quality is strongly impaired in patients with alcohol dependency. Differences in the dream experience between alcohol-dependent patients and healthy controls are in accordance with the continuity hypotheses of dreaming. The hypothesis of dreaming about alcohol as a compensatory effect, however, could not be confirmed.

Management of Nausea, Vomiting, and Diarrhea During Critical Illness

Symptoms are subjective patient experiences that may negatively impact the patient's hospitalization, treatment plan, and quality of life. Critically ill patients frequently experience nausea, vomiting, and diarrhea related to underlying disease, procedures, and medical interventions (eg, medication, enteral feeding, surgery). Optimally, the nurse performs a subjective assessment that explores the patient's perception and impact of these symptoms to develop a comprehensive plan of care. Unfortunately, little evidence is available to guide assessment of nausea, vomiting, and diarrhea in critically ill nonverbal patients. Understanding the disease processes, medical treatments, and pathophysiology of these symptoms will assist the critical care nurse in the anticipation of symptoms and development of a proactive plan to alleviate the symptom-associated discomfort.

Commentary: Encouraging Clinicians to Incorporate Longitudinal Patient-Reported Symptoms in Routine Clinical Practice

Commentary: Encouraging Clinicians to Incorporate Longitudinal Patient-Reported Symptoms in Routine Clinical Practice

Subjective versus objective: an exploratory analysis of latino primary care patients with self-perceived depression who do not fulfill primary care evaluation of mental disorders patient health questionnaire criteria for depression.

Identification and treatment of depression may be difficult for primary care providers when there is a mismatch between the patient's subjective experiences of illness and objective criteria. Cultural differences in presentation of symptoms among Latino immigrants may hinder access to care for treatment of depression. This article seeks to describe the self-perceptions and symptoms of Latino primary care patients who identify themselves as depressed but do not meet screening criteria for depression. A convenience sample of Latino immigrants (N = 177) in Corona, Queens, New York, was obtained from a primary care practice from August 2008 to December 2008. The sample was divided into 3 groups according to whether participants met Patient Health Questionnaire diagnostic criteria for depression and whether or not participants had a self-perceived mental health problem and self-identified their problem as "depression" from a checklist of cultural idioms of distress. Psychosocial, demographic, and treatment variables were compared between the 3 groups. Participants' descriptions of symptoms had a predominantly somatic component. The most common complaints were ánimo bajo (low energy) and decaimiento (weakness). Participants with "subjective" depression had mean scores of somatic symptoms and depression severity that were significantly lower than the participants with "objective" depression and significantly higher than the group with no depression (P < .0001). Latino immigrants who perceive that they need help with depression, but do not meet screening criteria for depression, still have significant distress and impairment. To avoid having these patients "fall through the cracks," it is important to take into account culturally accepted expressions of distress and the meaning of illness for the individual.

A guide to qualitative research in plastic surgery.

Qualitative research can explore parts of the subjective patient experience that cannot be detailed with quantitative methods such as surveys. Unfortunately, this powerful methodology is underused in plastic surgery, a specialty where subjective outcomes are more important than traditional outcomes indicators. Qualitative research can be used to add depth to patient satisfaction questionnaires or other quantitative measures. Qualitative methodology can also be used to explore complex issues such as why patients choose to undergo cosmetic surgery or to detail patient experiences following reconstructive surgery. The authors explain the basics of qualitative research, including asking the appropriate research question, applying steps to collect data, data analysis, and practical applications of the results.

Assessing Fatigue in Multiple Sclerosis: Shedding Light on the Elephant in the Dark

Assessing Fatigue in Multiple Sclerosis: Shedding Light on the Elephant in the Dark

The medical humanities: literature and medicine

The medical humanities attempt to emphasise the subjective experience of patients within the objective and scientific world of medicine. This article argues that the goal of medical humanities can be furthered by literature. Autobiographical accounts are used to illustrate the various ways in which literature can influence and enrich medical practice.

Coercion and compulsion in community mental health care

There is ongoing debate in the UK as to the place of coercion and compulsion in community mental health care. Recent changes in service provision and amendments to the Mental Health Act in England and Wales have increased the scope for compulsion in the community. This has intensified the debate revealing fault lines in the psychiatric and legal professions. Despite powerful arguments from all sides there is little empirical evidence to inform this debate at a clinical or a theoretical level. This review utilizes evidence from articles in peer reviewed journals. Papers were identified from electronic databases, the authors' databases of relevant literature and personal correspondence with experts in the field. The evidence base is relatively small but is expanding. It has been demonstrated that informal coercion is common in USA mental health services and can be experienced negatively by patients. There is evidence that powers of compulsion in community mental health care are used frequently when available and their availability is generally seen as positive by clinicians when practice becomes embedded. The evidence for the effectiveness of compulsion in community mental health care is patchy and conflicting, with randomized or other trials failing to show significant benefits overall even if secondary analyses may suggest positive outcomes in some subgroups. There are widespread regional and international differences in the use of community compulsion. Research examining treatment pressures (or 'leverage') and the subjective patient experience of them appears to be expanding and is increasing our awareness and understanding of these complex issues. There is an urgent need for evidence regarding the usefulness and acceptability of compulsion in the community now that powers have been made available. Trials of the effectiveness of compulsion are needed as is qualitative work examining the experiences of those involved in the use of such orders. These are needed to help clinicians utilize the powers available to them in an informed and judicious fashion and to ensure adequate training.

Subjective experience of illness and treatment received in depressed oncologic patients: A qualitative analysis.

e19582 Background: Qualitative analysis may provide a better way to analyze the subjective experience of patients and may give important insight to guide the decision among the interventions. The goal of this study was to analyze the narrative of depressed oncologic patients and the differences between the group who received combined treatment versus the group who received antidepressant plus usual care. Methods: A qualitative research design using grounded theory was used. 72 subjects (mean age 54.6 years), predominantly female, with non-metastatic breast, lung and colon cancer and depressive disorder (DSM-IV-TR) were randomized to receive combined treatment (n = 39) or escitalopram plus usual care (n = 33).Focal discussion groups for each group of treatment were organized as a semi-structured group interview. Results: Subjects receiving combined treatment may speak more explicitly about feelings, consider that they have got learning from the experience of illness generating a change of values and perceive more support from the medical team. The words “death,” “illness” and “cancer” are used more frequently compared to the group who received usual care plus antidepressant (p<.005). Conclusions: Combined treatment in depressed oncologic patients is related to a different experience of illness in which predominates learning, resources and feelings. This study is part of the FIS PI07/90348 and PI07/90452 Investigation Project. No significant financial relationships to disclose.

Efficacy of Guided Imagery With Theta Music for Advanced Cancer Patients With Dyspnea: A Pilot Study

Dyspnea is a frequent and devastating symptom among advanced cancer patients for which improved and low-cost palliative techniques are needed. A one-group repeated measures research design investigated the efficacy of guided imagery (GI) with theta music (M) on dyspnea in advanced cancer patients. The intervention consisted of four periods: (a) pretest; (b) intervention with peaceful non-M; (c) intervention with 10 min of GI with M (GI/M), with the first and last 3 min being M only (i.e., the middle 4 min was GI/M); and (d) posttest. Dyspnea outcome was measured with the Modified Borg Scale (MBS) for self-reported evaluation of dyspneic symptoms. Physiological parameters measured were pulse oxygen saturation (SpO(2)), end-tidal CO( 2) (EtCO(2)), heart rate (HR), and respiratory rate (RR). Posttest qualitative data were obtained via interview for subjective patient experience. Participants included 53 patients, 33% with lung cancer. GI/M produced a significant decrease in MBS scores; 90% of the subjects gave positive qualitative reviews of GI/M. SpO(2) did not change significantly over time. GI/M significantly increased EtCO(2), decreased RR, and decreased HR. This study demonstrates that GI/M is a useful intervention for palliative care of patients with dyspnea. M alone was demonstrated to be effective, while soothing non-M was not effective. GI/M was more effective than M alone. GI/M should be considered low-cost end-of-life palliative care for dyspnea.

Visual Experience During Phacoemulsification-Trabeculectomy Under Peribulbar Anesthesia

To investigate the subjective visual experience of patients with concurrent cataract and glaucoma during phacoemulsification-trabeculectomy under peribulbar anesthesia. Consecutive patients with concurrent cataract and glaucoma who underwent phacoemulsification-trabeculectomy under peribulbar anesthesia for the first time were interviewed using a standardized questionnaire between 30 minutes and 4 hours after the surgery. They were asked about their intraoperative visual experiences and their reaction to their visual experience. There was no preoperative discussion with the patients on possible intraoperative visual sensations that they might experience. No preoperative or intraoperative sedation was used. Sixty patients with a mean age of 64.8 years (range: 41 to 86 years) were included in the study. Light perception was reported by 73.3% of patients and no light perception by 26.7% throughout the operation. Some patients reported they could also see movements (65%), flashes (53.3%), one or more colors (48.3%), a change in light brightness (38.3%), instruments (8.3%), and/or the surgeon/medical staff (1.7%). Of the 29 patients (48.3%) who saw one or more colors, 18 patients saw yellow, 12 blue, 4 green, 2 orange, and 1 red. One patient (1.7%) found the visual experience frightening and the rest (98.3%) found theirs pleasant. The majority of patients with concurrent cataract and glaucoma undergoing phacoemulsification-trabeculectomy using peribulbar anesthesia experience a variety of visual sensations, although only a minority was frightened by the visual experience.

L’intervention brève en psychiatrie de consultation-liaison

This essay presents a perspective on intervention in psychiatric consultation based on the patient's subjective experience as supported by Kendler in 2005 in the American Journal of Psychiatry in his position against biological reductionism in psychiatry, distinguishing the psychic approach from the biological. The paper presents aspects of the setting and major features of the assessment in the consultation process, then proceeds to discussing principles of intervention as to specify dimensions of the psychiatric intervention in this particular context.