Patients׳ perspectives on how treatment can impede their recovery from depression.

BACKGROUND: More than 50% of all major depressive disorder (MDD) patients experience insufficient improvement from the available treatment options. There is emerging evidence that patients׳ beliefs and experiences about MDD treatment influence treatment outcomes. The aim was to explore patients׳ perspectives on impeding characteristics of professional treatment for the recovery of MDD. METHODS: In-depth interviews in a purposive sample with 27 recovered MDD patients who had received professional treatment. Data were qualitatively analyzed using constant comparison. RESULTS: Participants׳ accounts yielded four major impeding themes: lack of clarity and consensus about the nature of the participants׳ MDD and the content of their treatment; precarious relationship with the clinician; unavailability of mental health care; and insufficient involvement of significant others. LIMITATIONS: The external generalizability may be limited due to missed other subgroups within depression. CONCLUSIONS: This study identified a comprehensive overview of impeding characteristics in MDD treatment from patients׳ perspectives. This may help clinicians to understand how patients experience MDD treatment, and to incorporate patients׳ perspectives about treatment into their joint decision-making. This can lead towards increased treatment adherence, motivation and finally success.

Nurses' experiences and perspectives on medication safety practices: an explorative qualitative study.

AIM: To explore nurses' experiences with and perspectives on preventing medication administration errors. BACKGROUND: Insight into nurses' experiences with and perspectives on preventing medication administration errors is important and can be utilised to tailor and implement safety practices. METHODS: A qualitative interview study of 20 nurses in an academic medical centre was conducted between March and December of 2011. RESULTS: Three themes emerged from this study: (1) nurses' roles and responsibilities in medication safety: aside from safe preparation and administration, the clinical reasoning of nurses is essential for medication safety; (2) nurses' ability to work safely: knowledge of risks and nurses' work circumstances influence their ability to work safely; and (3) nurses' acceptance of safety practices: advantages, feasibility and appropriateness are important incentives for acceptance of a safety practice. CONCLUSIONS: Nurses' experiences coincide with the assumption that they are in a pre-eminent position to enable safe medication management; however, their ability to adequately perform this role depends on sufficient knowledge to assess the risks of medication administration and on the circumstances in which they work. IMPLICATIONS FOR NURSING MANAGEMENT: Safe medication management requires a learning climate and professional practice environment that enables further development of professional nursing skills and knowledge.

A qualitative participatory study to identify experiences of coronary heart disease patients to support the development of online self-management services.

OBJECTIVE: Web-based self-management services remain underutilized in current practice. Our aim was to gain insight into disease and self-management experiences of patients in early and progressive stages of coronary heart disease (CHD), to understand moderating effects of daily life experiences on the utilization of web-based self-management services and preconditions for use. METHODS: We applied generative research techniques, which stem from the field of product design and are characterized by the use of creative processes. Three groups of patients with CHD received a sensitizing package to document and reflect on their health, and were subsequently either interviewed or participated in a focus group session. RESULTS: In total, 23 patients participated in this study. Emerging themes were (1) fear for recurrent events, (2) experiences with professional care, (3) the perceived inability to prevent disease progression, (4) the desire to go on living without thinking about the disease every day, (5) the social environment as a barrier to or facilitator for self-management, and (6) the need for information tailored to personal preferences. CONCLUSION: How patients experience their disease varies between stable and post-acute stages, as well as between early and progressive stages of CHD. Patients in post-acute stages of the disease seem to be most amenable to support, while patients in stable stages want to live their life without being reminded of their disease. In the context of self-management, web-based services should be adapted to the variation in needs that occur in the different stages of CHD and new strategies to fit such services to these needs should be developed. Furthermore, they should be tailored to patients' individual health situation and preferences, support patient empowerment, and manage expectations regarding the progression of their disease.

The influence of medical testing on patients' health: an overview from the gynecologists' perspective.

BACKGROUND: A medical tests may influence the health of patients by guiding clinical decisions, such as treatment in case of a positive test result. However, a medical test can influence the health of patients through other mechanisms as well, like giving reassurance. To make a clinical recommendation about a medical test, we should be aware of the full range of effects of that test on patients. This requires an understanding of the range of effects that medical testing can have on patients. This study evaluates the mechanisms through which medical testing can influence patients' health, other than the effect on clinical management, from a gynecologist's perspective. METHODS: A qualitative study in which explorative focus groups were conducted with gynecologists, gynecological residents and gynecological M.D. researchers (n = 43). Discussions were transcribed verbatim. Transcriptions were coded inductively and analyzed by three researchers. RESULTS: All participants contributed various clinical examples in which medical testing had influenced patients' health. Clinical examples illustrated that testing, in itself or in interaction with contextual factors, may provoke a wide range of effects on patients. Our data showed that testing can influence the doctor's perceptions of the patients' appraisal of their illness, their perceived control, or the doctor-patient relationship. This may lead to changes in psychological, behavioral, and/or medical outcomes, both favorably or unfavorably. The data were used to construct a conceptual framework of effects of medical testing on patients. CONCLUSIONS: Besides supporting clinical decision making, medical testing may have favorable or unfavorable effects on patients' health though several mechanisms.

Fabry patients' experiences with the timing of diagnosis relevant for the discussion on newborn screening.

This study aimed to explore Fabry disease (FD) patients' experiences with the timing of their diagnosis and identify important patient-oriented themes relevant to discussions about the need for newborn screening (NBS) for this disorder. Thirty FD patients (13 males) were included in a qualitative study involving semi-structured interviews. The interviews were audiorecorded and transcribed, and the transcripts were analyzed to identify themes that captured the patients' experiences. The interview analysis revealed six relevant themes. One of these was the impact of a delayed diagnosis on severely affected patients, who often felt misunderstood and were frequently misdiagnosed. In contrast, some patients mentioned the drawbacks of presymptomatic diagnosis, which was associated with labeling and medicalization. In addition, the ability to anticipate future FD-related problems was considered both an advantage and a disadvantage of early diagnosis. Still, patients reported that they felt that an early FD diagnosis could prevent disease progression through the timely initiation of treatment. This study identified several relevant themes that reflect both the phenotypic heterogeneity of the disease and the substantial differences between patients' experiences with and without FD symptoms before diagnosis and among the patients in each group. These results add considerable nuances to the discussion about NBS programs for FD and should be incorporated into the debate.

Work participation and arthritis: a systematic overview of challenges, adaptations and opportunities for interventions.

OBJECTIVE: Understanding the factors that play a role in maintaining people with inflammatory arthritis in the workforce may aid the design of interventions to support work participation. The objective of this systematic overview is to summarize qualitative studies that explore experiences of patients with inflammatory arthritis to remain employed or return to work. METHODS: Bibliographic databases including MEDLINE, EMBASE and PsycInfo were searched until December 2011 to identify any qualitative studies that focused on experiences, challenges or adaptations of patients with inflammatory arthritis to remain employed. Thematic analyses were used to identify any first or higher order themes for which all data were entered into MAXQDA software. In addition, methodological quality was assessed using an eight-item checklist. RESULTS: Of 6338 citations, 10 studies were included. RA was the condition in eight studies. Individual interviews (six studies) were used more frequently than group interviews (four studies). Methodological quality varied from 2 to 8 points and had no effect on the number of themes identified. Thematic analyses showed seven key concepts important to patients, including disease symptoms, management of the disease, socioeconomic issues, work conditions and adaptations, emotional challenges, interpersonal issues affecting work and family life and meaning of work. CONCLUSION: By including studies from different countries and settings, we show a comprehensive overview of themes considered important by patients and strengthen our belief that these factors should be considered in interventions that aim to improve work participation for patients with inflammatory arthritis.

Research monitoring by US medical institutions to protect human subjects: compliance or quality improvement?

In recent years, to protect the rights and welfare of human subjects, institutions in the USA have begun to set up programmes to monitor ongoing medical research. These programmes provide routine, onsite oversight, and thus go beyond existing oversight such as investigating suspected misconduct or reviewing paperwork provided by investigators. However, because of a lack of guidelines and evidence, institutions have had little guidance in setting up their programmes. To help institutions make the right choices, we used interviews and document analysis to study how and why 11 US institutions have set up their monitoring programmes. Although these programmes varied considerably, we were able to distinguish two general types. 'Compliance' programmes on the one hand were part of the institutional review board office and set up to ensure compliance with regulations. Investigators' participation was mandatory. Monitors focused on documentation. Investigators could be disciplined, and could be obliged to take corrective actions. 'Quality-improvement' programmes on the other hand were part of a separate office. Investigators requested to be monitored. Monitors focused more on actual research conduct. Investigators and other parties received feedback on how to improve the research process. Although both types of programmes have their drawbacks and advantages, we argue that if institutions want to set up monitoring programmes, quality improvement is the better choice: it can help foster an atmosphere of trust between investigators and the institutional review board, and can help raise the standards for the protection of human subjects.

Experiences of parents and patients with the timing of Mucopolysaccharidosis type I (MPS I) diagnoses and its relevance to the ethical debate on newborn screening.

INTRODUCTION: Newborn screening (NBS) techniques have been developed for several lysosomal storage disorders (LSDs), including Mucopolysaccharidosis type I (MPS I). MPS I is an LSD with a wide phenotypic spectrum that ranges from the severe Hurler phenotype to the attenuated Scheie phenotype. To improve the ethical discussion about NBS for MPS I, we performed an interview study to explore the experiences of MPS I patients and their parents with the timings of their diagnoses. METHODS: We used a qualitative research approach consisting of 17 interviews with the parents of patients with all MPS I phenotypes and with patients with attenuated forms of MPS I. The interviews were audio-recorded, transcribed and subsequently analyzed to identify the main themes identified by the participants. RESULTS: Five important themes, focusing on the experienced disadvantages of delayed diagnosis and the advantages and disadvantages of a hypothetical earlier diagnosis, were identified in our group of participants: 1) delayed diagnosis causing parental frustration, 2) delayed diagnosis causing patient frustration, 3) early diagnosis enabling reproductive decision-making, 4) early diagnosis enabling focusing on the diagnosis, and 5) early diagnosis enabling timely initiation of treatment. There was a remarkable similarity in the experiences with timing of diagnosis between parents of patients with the severe and the attenuated forms. CONCLUSION: This was the first study to explore the personal experiences of MPS I patients and their parents with diagnostic timing. Our study identified five important themes that are highly relevant to the ethical discussion on expanding NBS programs for MPS I.

Ethical review from the inside: repertoires of evaluation in Research Ethics Committee meetings.

Evaluating the practice of ethical review by Research Ethics Committees (REC) could help protect the interests of human participants and promote scientific progress. To facilitate such evaluations, we conducted an ethnographic study of how an REC reviews research proposals during its meetings. We observed 13 meetings of a Dutch REC and studied REC documents. We coded this material inductively and categorised these codes in two repertoires of evaluation: a repertoire of rules and a repertoire of production. In the repertoire of rules the REC applies rules, weighs scientific value and burdens to the participants and makes a final judgment on a research proposal in a meeting. In the repertoire of production, REC members check documents and forms and advise researchers on how to improve their proposals and can use informal communication. Based on these findings, we think that evaluations of the practice of ethical review should take into account the fact that RECs can use a repertoire of rules and a repertoire of production to evaluate research proposals. Combining these two repertoires can be a viable option so that the REC gives researchers advice on how to improve their proposals to prevent rejection of valuable research.

Disentangling cancer patients' trust in their oncologist: a qualitative study.

OBJECTIVE: Patients' trust in their physician is crucial for an optimal treatment. Yet, among oncology patients, for whom trust might be especially important, research into trust is limited. A qualitative interview study was carried out to investigate (1) to what extent aspects of trust important to cancer patients reflect the aspects described in other patient populations and (2) which additional themes emerge. METHODS: In-depth, semi-structured interviews were performed with a purposefully selected heterogeneous sample of 29 cancer patients. Transcribed interviews were analyzed using MAXqda. Data were clustered across interviews to derive common themes related to trust. RESULTS: Three commonly described aspects, i.e., fidelity, competence and honesty, were strongly reflected in patients' accounts of trust in their oncologist. Confidentiality was irrelevant to many. An additional aspect, labeled 'caring', was distinguished. Central to the accounts of these patients was their need to trust the oncologist, arising from the severe and life-threatening nature of their disease. This necessity to trust led to the quick establishment of a competence-based trust alliance. A deeper, more emotional bond of trust was developed only after repeated interaction and seemed primarily based on the oncologist's interpersonal skills. CONCLUSIONS: The need for trust encountered in this study underscores the power imbalance between cancer patients and their oncologist. Additionally, these results imply that when aiming to measure cancer patients' trust, what we might actually be assessing is patients' intention and determination to trust their oncologist.

How unexpected are unexpected findings in prenatal cytogenetic diagnosis? A literature review.

The objective of this review was to gain understanding about unexpected findings in prenatal cytogenetic diagnosis. This category of results might be excluded from prenatal testing when new molecular tests such as I-FISH and QF-PCR will be applied in a future scenario of targeted testing. The literature was systematically searched for publications wherein the term unexpected or a synonym refers to testing results with specific problems. On the selected articles a qualitative analysis was performed, using the methods of cross-case analysis and within-case analysis. Sixteen articles published between 1979 and 2003 were selected. Analysis led to the classification of four problems of unexpected findings: I. unexpected for professionals; II. unexpected for patients; III. uncertainty; IV. other difficult counselling issues. We conclude that currently the problems of unexpected findings relate only slightly to their unexpected character. Instead, the main problems of unexpected findings relate to uncertainty and other aspects which create difficult counselling issues. As such, unexpected findings can be distinguished only gradually from standard results. Before targeted testing can be applied it is necessary to establish exact criteria in order to discern unexpected findings from standard testing results.