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Ambivalent connections: a qualitative study of the care experiences of non-psychotic chronic patients who are perceived as 'difficult' by professionals.

ABSTRACT: BACKGROUND: Little is known about the perspectives of psychiatric patients who are perceived as 'difficult' by clinicians. The aim of this paper is to improve understanding of the connections between patients and professionals from patients' point of view. METHODS: A Grounded Theory study using interviews with 21 patients from 12 outpatient departments of three mental health care facilities. RESULTS: Patients reported on their own difficult behaviours and their difficulties with clinicians and services. Explanations varied but could be summarized as a perceived lack of recognition. Recognition referred to being seen as a patient and a person - not just as completely 'ill' or as completely 'healthy'. Also, we found that patients and professionals have very different expectations of one another, which may culminate in a difficult or ambivalent connection. In order to explicate patient's expectations, the patient-clinician contact was described by a stage model that differentiates between three stages of contact development, and three stages of substantial treatment. According to patients, in each stage there is a therapeutic window of optimal clinician behaviour and two wider spaces below and above that may be qualified as 'toxic' behaviour. Possible changes in clinicians' responses to 'difficult' patients were described using this model. CONCLUSIONS: The incongruence of patients' and professionals' expectations may result in power struggles that may make professionals perceive patients as 'difficult'. Explication of mutual expectations may be useful in such cases. The presented model gives some directions to clinicians how to do this.

SUBMITTER: Koekkoek B

PROVIDER: S-EPMC3002895 | biostudies-other | 2010

REPOSITORIES: biostudies-other

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Ambivalent connections: a qualitative study of the care experiences of non-psychotic chronic patients who are perceived as 'difficult' by professionals.

Koekkoek Bauke B van Meijel Berno B van Ommen Joyce J Pennings Renske R Kaasenbrood Ad A Hutschemaekers Giel G Schene Aart A

BMC psychiatry 20101124

<h4>Background</h4>Little is known about the perspectives of psychiatric patients who are perceived as 'difficult' by clinicians. The aim of this paper is to improve understanding of the connections between patients and professionals from patients' point of view.<h4>Methods</h4>A Grounded Theory study using interviews with 21 patients from 12 outpatient departments of three mental health care facilities.<h4>Results</h4>Patients reported on their own difficult behaviours and their difficulties wi ...[more]

PMID: 21106084

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Project description:BackgroundPatients and other stakeholders are increasingly engaging as partners in research, although how they perceive such experiences, particularly over the long term, is not well understood.ObjectiveTo characterize how participants from a nondialysis chronic kidney disease (CKD) research priority-setting project conducted 2 years previously perceived the significance of their involvement.DesignQualitative descriptive study with semi-structured, individual interviews.SettingParticipants resided across Canada.ParticipantsEligible participants included stakeholders (ie, patients with nondialysis CKD, caregivers, health care professionals, and policy makers) who had taken part in a prior CKD research priority-setting project.MeasurementsWe explored stakeholder experiences and perspectives on engagement in CKD research prioritization.MethodsWe purposively sampled across stakeholder roles and engagement types (ie, involvement in the priority-setting workshop, wiki online tool, and/or steering committee). All interviews were conducted by a single investigator by telephone or face-to-face, and audio-recordings were transcribed verbatim. The data were inductively coded and analyzed by 2 investigators using a thematic analysis approach.ResultsWe conducted 23 interviews across stakeholder roles and engagement types. Participants appreciated the integration of distinct stakeholder communities of patients, researchers, and health care professionals that occurred through engagement in research priority setting. Their opportunity to interact with patients and others directly impacted by CKD outside of the clinical setting contributed to an enhanced understanding of the CKD lived experience and value of patient-oriented research. This interaction helped participants refine and refocus their commitment to patient-centered CKD care and research, characterized by enhanced knowledge and confidence (patients/caregivers), adaptations to existing clinical practices and policies (health care providers/policy makers), and subsequent research engagement.LimitationsThe views of participants may not reflect those of individuals in other research or health care settings.ConclusionsStakeholder engagement in nondialysis CKD research prioritization encouraged the integration of stakeholder communities, an appreciation of the CKD experience, and a refocusing of participants' commitment to research and care. Findings highlight considerations for future health research engaging stakeholders, particularly those living with CKD, as research partners.

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Project description:BackgroundOne reason for the introduction of digital technologies into health care has been to try to improve safety and patient outcomes by providing real-time access to patient data and enhancing communication among health care professionals. However, the adoption of such technologies into clinical pathways has been less examined, and the impacts on users and the broader health system are poorly understood. We sought to address this by studying the impacts of introducing a digitally enabled care pathway for patients with acute kidney injury (AKI) at a tertiary referral hospital in the United Kingdom. A dedicated clinical response team-comprising existing nephrology and patient-at-risk and resuscitation teams-received AKI alerts in real time via Streams, a mobile app. Here, we present a qualitative evaluation of the experiences of users and other health care professionals whose work was affected by the implementation of the care pathway.ObjectiveThe aim of this study was to qualitatively evaluate the impact of mobile results viewing and automated alerting as part of a digitally enabled care pathway on the working practices of users and their interprofessional relationships.MethodsA total of 19 semistructured interviews were conducted with members of the AKI response team and clinicians with whom they interacted across the hospital. Interviews were analyzed using inductive and deductive thematic analysis.ResultsThe digitally enabled care pathway improved access to patient information and expedited early specialist care. Opportunities were identified for more constructive planning of end-of-life care due to the earlier detection and alerting of deterioration. However, the shift toward early detection also highlighted resource constraints and some clinical uncertainty about the value of intervening at this stage. The real-time availability of information altered communication flows within and between clinical teams and across professional groups.ConclusionsDigital technologies allow early detection of adverse events and of patients at risk of deterioration, with the potential to improve outcomes. They may also increase the efficiency of health care professionals' working practices. However, when planning and implementing digital information innovations in health care, the following factors should also be considered: the provision of clinical training to effectively manage early detection, resources to cope with additional workload, support to manage perceived information overload, and the optimization of algorithms to minimize unnecessary alerts.

Project description:BackgroundDementia has become a major public health issue worldwide due to its rapidly increasing prevalence and an increasing number of dementia-related deaths in long-term care facilities. The aim of this study was to examine health professionals' experiences of potential barriers and facilitators in providing palliative care for people with severe dementia in long-term care facilities.MethodsThis was a qualitative descriptive study. The data were collected from four focus groups and 20 individual in-depth interviews with healthcare professionals from four Norwegian nursing homes. The data were analysed by thematic text analysis, as described by Braun and Clarke.ResultsThe major findings indicate that healthcare professionals experience a lack of continuity as the main barrier to facilitating palliative care. Time pressure and increased efficiency requirements especially affect the weakest and bedridden residents with dementia. The healthcare professionals feel conflicted between wanting to spend more time caring for each individual resident and feeling pressure to help everyone. Although resources are scarce, dying residents are always given priority by healthcare professionals, either by the hiring of extra personnel or the reorganization of tasks in a way that facilitates someone staying with the terminal resident. Advanced care planning was highlighted as a facilitator in providing palliative care, but the extensive use of temporary staff among nurses and doctors and the relocation between the sheltered and long-term wards threaten the continuity in planning and providing palliative care.ConclusionsThe findings indicate that healthcare professionals experienced several structural barriers that prevented the provision of palliative care to people with severe dementia in long-term care facilities. Increasing demands for economic rationality lead to a lack of continuity of care. Organizational changes, such as measures to increase the competence and the proportion of permanent employees and the prevention of burdensome end-of-life transitions, should be implemented to improve continuity and quality of care.

Dataset Information

Ambivalent connections: a qualitative study of the care experiences of non-psychotic chronic patients who are perceived as 'difficult' by professionals.

Publications

Ambivalent connections: a qualitative study of the care experiences of non-psychotic chronic patients who are perceived as 'difficult' by professionals.

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