The Power of Perception: Lived Experiences with Diagnostic Labeling in Mental Health Recovery without Ongoing Medication Use

Eads, Ray; Lee, Mo Yee; Liu, Chang; Yates, Nancy

doi:10.1007/s11126-020-09866-8

Cited by 5 publications

(4 citation statements)

References 25 publications

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“…The frustration of feeling different and the powerlessness in the face of the illness provide a favorable environment for the identity to be infiltrated by the diagnosis, making it difficult to separate symptoms and personality traits and driving the loss of autonomy and distancing these individuals from their social role. Recognizing one's limitations and nurturing positive traits can contribute to redefining identity from the perspective of recovery 17 , 25 , 27 , 31 . Understanding and accepting the diagnosis and this new identity impact the understanding that it is necessary to engage in treatment that best offers means to regain quality of life and contribute to recovery.…”

Section: Discussionmentioning

confidence: 99%

“…This may have influenced their stories of recovery, and we are certainly not claiming diagnostic acceptance is the only pathway to recovery. There are studies that report, for instance, on the experience of recovery without medication, indicating a complex role for treatment 25 , 42 . Participants not currently using medications commonly attribute the recovery to a “shift in perspective”, where they can find their own solutions and often redefine themselves, dispensing with diagnostic labels altogether.…”

Section: Discussionmentioning

confidence: 99%

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A grounded theory on acceptance of diagnosis as a pathway to recovery in bipolar disorder

Pereira,

Padoan,

Silva

et al. 2024

Sci Rep

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The recovery process in bipolar disorder is a subjective and multidimensional experience that seeks to develop new meanings and purposes for living a satisfying life despite the limitations imposed by the disorder. Thus, this qualitative study aimed to explore the perceptions of recovery and the meanings attributed by individuals undergoing treatment for bipolar disorder to the elements considered relevant in this process. Semi-structured interviews with open-ended questions were conducted to explore the experiences and perspectives of recovery in individuals undergoing treatment for bipolar disorder. Grounded Theory was used as the method for qualitative analysis. The study included 26 participants aged between 18 and 65 years. Based on the analysis of participant reports, we identified two main themes: living with the illness and what it means to be in recovery. The perception of recovery is an individual process and can differ from the medical model. Participants suggest that accepting the diagnosis of bipolar disorder and finding meaning in life are essential to their recovery. They also describe how mental health professionals can facilitate or hinder this process. Understanding patients’ perceptions can facilitate access to healthcare services and treatment adherence.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

A grounded theory on acceptance of diagnosis as a pathway to recovery in bipolar disorder

Pereira,

Padoan,

Silva

et al. 2024

Sci Rep

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“…Unwanted side effects of clinical diagnoses on self-perception and negative societal reactions have long been described in research literature [ 41 , 42 ]. To decrease negative emotional (e.g., feeling of powerlessness) and behavioral (e.g., reduced help-seeking behavior) consequences, involving affected individuals in interpreting their mental health symptomatology could contribute to a desirable shift in perception of one’s own mental illness, strengthen their recovery orientation, and reveal complementary internal resources, as described by Eads et al [ 43 ].…”

Section: Discussionmentioning

confidence: 99%

Experiencing (Shared) Decision Making: Results from a Qualitative Study of People with Mental Illness and Their Family Members

et al. 2023

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(1) Background: There is a fundamental shift in healthcare toward shared decision making (SDM). This study explores SDM from the perspective of individuals affected by mental illness and their family members and investigates factors which promote and hinder the process. (2) Methods: We conducted N = 15 telephone interviews (n = 4 adults affected by mental illness, n = 5 family members, n = 6 both applicable, the majority reporting experiences with affective and anxiety disorders). Data were recorded, transcribed, and analyzed according to procedures established by Mayring. (3) Results: Individuals affected by mental illness and their family members have a strong desire to be involved in treatment decisions and to participate in finding a diagnosis. Often these stakeholders are denied the opportunity to participate; sometimes enabling behaviors impede participation. The stigmatization of mental illnesses is a major barrier. There are also structural barriers to SDM within the healthcare system. Peer support, self-help associations, and psychosocial counseling services are important to empowering individuals and promoting SDM. (4) Conclusions: SDM has the potential to improve the quality of mental healthcare. Barriers can be mitigated and new approaches for interventions in the psychiatric sector have been identified. This study has also shown the importance of understanding SDM as a process that should begin at the diagnostic phase.

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“…Schizophrenia is typically characterised as a serious, lifelong, biomedical mental disorder (Magliano et al, 2020;Pickersgill, 2023) and a diagnosis of schizophrenia can be life changing. Diagnosis can lead to both negative (e.g., disempowerment, labelling, social exclusion) and positive (e.g., access to care, naming the problem, externalisation) outcomes, depending on the individual and the context (Eads et al, 2021;Howe et al, 2014;Pitt et al, 2009;Rose & Thornicroft, 2010). Relatively few studies have, however, considered the impact of diagnosis from a lived experience perspective (e.g., Perkins et al, 2018).…”

Section: Introductionmentioning

confidence: 99%

The complex lived experience of schizophrenia diagnosis: A thematic analysis of online forum posts

Lyons,

Gupta,

Blaney

et al. 2023

Preprint

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Receiving a diagnosis of schizophrenia can be a life-changing experience with both negative and positive consequences. Previous research has identified important aspects of diagnosis, such as disagreement with the label, diagnostic shifts, stigma, and communication of the diagnosis. There is, however, relatively little research from the lived experience perspective. In this study, we investigated the lived experiences of receiving a schizophrenia diagnosis utilising a popular Reddit discussion forum. We used inductive thematic analysis to consider posts from 105 unique usernames and identified five themes. These were (i) Denial and acceptance; (ii) Stigma of diagnosis; (iii) The process of diagnosis; (iv) Identity and sense of the self; and (v) Receiving, finding, and providing support. Diagnosis is a complex personal experience where the same person can simultaneously accept and reject the diagnostic label. Greater attention is required to the lived experience of this diagnostic journey.

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The Power of Perception: Lived Experiences with Diagnostic Labeling in Mental Health Recovery without Ongoing Medication Use

Cited by 5 publications

References 25 publications

A grounded theory on acceptance of diagnosis as a pathway to recovery in bipolar disorder

A grounded theory on acceptance of diagnosis as a pathway to recovery in bipolar disorder

Experiencing (Shared) Decision Making: Results from a Qualitative Study of People with Mental Illness and Their Family Members

The complex lived experience of schizophrenia diagnosis: A thematic analysis of online forum posts

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