A research agenda for bipolar disorder developed from a patients’ perspective

Maassen, Eva F.; Regeer, B.J.; Bunders, Joske; Regeer, Eline J.; Kupka, Ralph

doi:10.1016/j.jad.2018.05.061

Cited by 7 publications

(10 citation statements)

References 38 publications

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“…These research needs were validated in a larger sample (n = 219) by means of a questionnaire. We have reported this study in detail elsewhere (Maassen et al 2018 ).…”

Section: Methodsmentioning

confidence: 99%

The challenges of living with bipolar disorder: a qualitative study of the implications for health care and research

Maassen

Regeer

et al. 2018

Int J Bipolar Disord

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BackgroundIn mental health care, clinical practice is often based on the best available research evidence. However, research findings are difficult to apply to clinical practice, resulting in an implementation gap. To bridge the gap between research and clinical practice, patients’ perspectives should be used in health care and research. This study aimed to understand the challenges people with bipolar disorder (BD) experience and examine what these challenges imply for health care and research needs.MethodsTwo qualitative studies were used, one to formulate research needs and another to formulate healthcare needs. In both studies focus group discussions were conducted with patients to explore their challenges in living with BD and associated needs, focusing on the themes diagnosis, treatment and recovery.ResultsPatients’ needs are clustered in ‘disorder-specific’ and ‘generic’ needs. Specific needs concern preventing late or incorrect diagnosis, support in search for individualized treatment and supporting clinical, functional, social and personal recovery. Generic needs concern health professionals, communication and the healthcare system.ConclusionPatients with BD address disorder-specific and generic healthcare and research needs. This indicates that disorder-specific treatment guidelines address only in part the needs of patients in everyday clinical practice.

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“…These research needs were validated in a larger sample (n = 219) by means of a questionnaire. We have reported this study in detail elsewhere (Maassen et al 2018 ).…”

Section: Methodsmentioning

confidence: 99%

The challenges of living with bipolar disorder: a qualitative study of the implications for health care and research

Maassen

Regeer

et al. 2018

Int J Bipolar Disord

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“…The expert by experience input would be beneficial to gain a perspective on what would help in the self-management of BD (Maassen, Regeer, Bunders, Regeer, & Kupka, 2018).…”

Section: Limitations and Future Researchmentioning

confidence: 99%

A qualitative exploration of how people with bipolar disorder consider risk-taking in everyday decisions

Wah

Hodge

Jones

et al. 2020

Behav. Cogn. Psychother.

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Background: Difficulties with decision making and risk taking in individuals with bipolar disorder (BD) have been associated with mood episodes. However, there is limited information about these experiences during euthymia, the mood state where people with BD spent the majority of their time. Aims: To examine how individuals with BD consider risk in everyday decisions during their euthymic phase. Method: We conducted a qualitative study that used semi-structured audio recorded interviews. Eight euthymic participants with confirmed BD were interviewed, and we used interpretative phenomenological analysis to analyse the data. Results: We identified four themes. The first theme, ‘Who I really am’, involves the relationship between individual identity and risks taken. The second theme, ‘Taking back control of my life’, explored the relationship between risks taken as participants strove to keep control of their lives. The third theme, ‘Fear of the “what ifs”’, represents how the fear of negative consequences from taking risks impacts risk decisions. Finally, the fourth theme, ‘The role of family and friends’, highlights the important role that a supporting network can play in their lives in the context of taking risks. Conclusions: The study highlights aspects that can impact on an individual with BD’s consideration of risk during euthymia. Identity, control, fear and support all play a role when a person considers risk in their decision-making process, and they should be taken into consideration when exploring risk with individuals with BD in clinical settings, and inform the design of future interventions.

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“…As a discussion tool, 23 research needs according to patients with BD were used. These research needs were formulated by patients with BD in a previous study by the authors, which aimed to set a research agenda from the perspective of patients with BD (Maassen et al, 2018). First, two pilot interviews were conducted with two researcher-psychiatrists to fine-tune the interview guide.…”

Section: Phase 2: Reflections Of Researcher-clinicians On Patients' Rmentioning

confidence: 99%

“…First, it improves the clinical relevance of research and the acceptance of the research outcomes (Abma & Broerse, 2010;Elberse et al, 2012), and second, it contributes substantive new knowledge, owing to patients' experience of living with the illness and their need for care (Broerse, Zweekhorst, van Rensen, & de Haan, 2010;Tait, 2005). In a previous study, we explored the research needs of patients with BD (Maassen, Regeer, Bunders, Regeer, & Kupka, 2018). As clinicians are also end users of the research, the same argument can be made to include them in the research process.…”

Section: Introductionmentioning

confidence: 99%

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Research Needs for Bipolar Disorder From Clinicians’ Perspectives: Narrowing the Research–Practice Gap

et al. 2019

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Research evidence is incompletely translated into clinical practice. This study aimed to explore research needs from clinicians' perspectives in the field of bipolar disorder and their reflections on patients' research needs as well as to unravel the potential role of researcher-clinicians, to narrow the research practice gap. Using focus group discussions (FGDs) and interviews, research needs according to psychiatrists, psychologists, and nurses working with bipolar disorder were explored. Subsequently, we interviewed researcher-clinicians to gain insights into their views on patients' research needs. The clinicians' research needs were clustered as: causes, diagnosis, pharmacotherapy, nonpharmacological treatment, recovery, and care system, and overlapped with the research needs formulated by patients. Researcher-clinicians were able to translate patients' needs into feasible research questions. Researcher-clinicians can serve as intermediaries between research and practice and can both integrate their practical experience into research and their research experience into practice.

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A research agenda for bipolar disorder developed from a patients’ perspective

Cited by 7 publications

References 38 publications

The challenges of living with bipolar disorder: a qualitative study of the implications for health care and research

The challenges of living with bipolar disorder: a qualitative study of the implications for health care and research

A qualitative exploration of how people with bipolar disorder consider risk-taking in everyday decisions

Research Needs for Bipolar Disorder From Clinicians’ Perspectives: Narrowing the Research–Practice Gap

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