Reflection on principal findings

The objective of this study was to examine key patterns and themes surrounding the acceptance of psychiatric diagnoses, determining to what extent traditional definitions stemming from chronic illness and chronic pain research align with the actual experiences and perspectives of patients. The variability in narrative structure and content was embraced as a source of richness rather than viewed as a limitation, in line with the phenomenological and interpretative frameworks underpinning this study. Our first analysis used existing theoretical concepts related to acceptance and, while applicable to some interviews, we found that these concepts insufficiently captured the meaning in illness narratives. Whereas elements of (non-)acceptance concepts by Williams and Lynn were recognisable, other concepts were deemed not applicable because the texts required substantial interpretation in order for the concepts to fit. In our subsequent analysis, we did not adopt a specific interpretation of diagnosis acceptance nor make general assumptions about it, thereby diverging from previous research in this field, such as studies by Kabzínska-Milewska et al, Pereira et al and de Oliveira et al. ^{Reference Kabzińska-Milewska, Czajeczny and Wójciak4,Reference Pereira, Padoan, Silva and Magalhães5,Reference Oliveira, Bim, Ferreira and Júnior30} We then studied the texts for overarching themes concerning diagnosis acceptance and related subjects. Attitudes towards a diagnosis span across and originate in multiple dimensions, and people mostly used terms other than ‘acceptance’ to describe them. Within the main themes related to acceptance of a schizophrenia diagnosis identified by Howe et al, a distinction similar to the one we make – between internal and external dimensions of diagnosis attitudes – can be discerned. ^{Reference Howe, Tickle and Brown6} Furthermore, interviewees expressed the importance of being allowed to have and express their own story during a consultation, without it being replaced or overruled by a diagnosis. Additionally, people described changing attitudes throughout the stories, suggesting they might continue to change in the future. This aligns with the notion that acceptance is not always linear but rather continually shifting and fluctuating, focusing on different aspects over time. ^{Reference Tekin31–Reference Jamison35} Many of our findings reflect the complexity highlighted in the phenomenological qualitative study by Pallesen et al, which examines the positive and negative aspects of a bipolar disorder diagnosis. ^{Reference Pallessen, Brown, Rose and Lawrence36} However, unlike their more binary approach (e.g. fitting versus not fitting, stigmatising versus legitimising), our results are organised according to the levels or dimensions on which these experiences occur. ^{Reference Pallessen, Brown, Rose and Lawrence36} The following sections will consider and interpret our findings, placing them in a broader context to evaluate their significance and implications.

Limitations

Although our approach deliberately diverges from much of the existing literature that conceptualises ‘acceptance’ as a relatively uniform or binary phenomenon, we do believe that people within different diagnostic categories may relate differently to their diagnosis. In our study, however, the sample size for individual diagnostic categories was too small to draw conclusions about specific diagnoses. Another notable limitation is the issue of representation and generalisability due to the selection of participants in the Psychiatry Story Bank project. As noted by van Sambeek et al, the sample consists of only Dutch people and is furthermore moderately homogeneous, potentially skewing the perspectives shared. ^{Reference van Sambeek, Franssen, van Geelen and Scheepers17} The Psychiatry Story Bank project’s ethos, aligned with the recovery movement, might attract participants less inclined towards traditional DSM-based perspectives, which introduces further bias. Additionally, participants are often individuals who have reflected on their past and are more prepared to share their stories, which might not accurately reflect the experiences of patients currently undergoing a turbulent diagnostic process. Finally, the research design’s reliance on self-directed storytelling prevents epistemic injustice but creates some challenges: it limits the ability to pose specific questions, leading to interpretative challenges. If an interviewee does not address certain topics, it may be unclear whether this meant that this subject was not relevant to them, or whether the omission was a deliberate choice, or refusal to use a term or discuss a certain issue. Fully exploring these nuances requires the ability to ask follow-up questions, which was not possible in this research design, potentially leading to different interpretations than intended by interviewees. Furthermore, this means that narratives were not focused specifically on diagnosis acceptance. Nonetheless, 70% of the narratives provided substantial material on acceptance and diagnostic experience, with an additional five people discussing acceptance of diagnosis-related subjects. This suggests that, despite voluntary participation, a significant part of the data-set directly addressed the research questions. It can also be argued that individuals who use their diagnosis to describe themselves refer to it as something applied to them, or treat it as an explanatory model – without explicitly reflecting on their opinion of it – have implicitly or automatically accepted the diagnosis. This applied to eight of the nine participants who did not directly discuss acceptance. Lastly, since our aim was not to measure acceptance across groups, we considered all participants’ narratives to be relevant to our research.

Implications for research and practice

Our findings underscore the complexity and subjectivity inherent in the (non-)acceptance of psychiatric diagnoses, suggesting the need for even greater sensitivity to the fragmented, dynamic and context-dependent nature of acceptance processes, particularly in psychiatry. Reflecting on the limited practical application of existing theoretical concepts of (non-)acceptance, along with our findings that revealed numerous contextual factors relevant to psychiatric diagnosis attitudes, the relevance and validity of approaching diagnosis ‘acceptance’ as an isolated concept must be carefully re-evaluated. Furthermore, it became apparent that disagreement about diagnostic classifications did not preclude effective collaboration and a strong therapeutic relationship. These points suggest that mutual understanding, as well as finding a shared language for the matters at hand, appear to be more crucial than diagnosis ‘acceptance’. ^{Reference McCabe74}

First, to avoid misunderstandings, clinicians should place more emphasis during the diagnostic process on explicitly communicating the provisional and descriptive nature of psychiatric classifications, rather than presenting them as definitive explanations of underlying causes. Psychoeducational materials and conversations could include clarifications about the distinction between classification and diagnosis as it exists in somatic medicine (implied causal interpretation), and address common misconceptions about biological essentialism or deterministic interpretations of psychiatric labels. To further foster mutual understanding during a diagnostic process, it is essential to understand individuals’ perceptions of their diagnoses and mental problems, as well as the diagnosis narrative they hold. While spontaneously told stories – such as interview transcripts – provide glimpses of these perceptions, they do not clarify exactly what a diagnosis narrative looks like or how it is formed, indicating that this needs to be a topic of discussion in consultation rooms. The understanding of a diagnosis narrative that someone may hold, along with comprehension of their perception of themselves, or self-narrative, is essential for both the individual and the HCP in comprehending the emotional charge and meaning of a (potential) diagnosis. Shared understanding concerning the meaning and implications of a classification or diagnosis, co-constructing a joint narrative and preventing competition between narratives are crucial steps.

To aid in these developments, future research should thus study questions surrounding psychiatric diagnoses and attitudes towards them using narrative approaches, taking context into account. Ongoing research by our team is exploring this context, particularly the way in which someone’s cultural and social context determines explanatory models and perceptions about illness and its treatment. It also explores the particular ways in which individuals in different diagnostic categories relate to their diagnoses. Specifically, the idea of a conflict between diagnosis narratives and self-narratives needs more thorough exploration. Moving forward, efforts to enrich our understanding of acceptance should prioritise exploring diverse narratives and perceptions, as well as study and promote strategies for creating co-constructed narratives. According to our findings, consultations may benefit from being organised not with the acceptance of a diagnosis as an end goal, but rather as an open space where multiple perspectives and narratives can exist and be explored. This approach contributes to greater reciprocality in patient-centred mental health care and research, and perhaps even to health improvement. ^{Reference van Geelen, Fuchs, Sinnema, van de Putte, van Geel and Hermans75}

In conclusion, our examination of (non-)acceptance in the context of patients’ experiences of psychiatric diagnosis reveals several key insights. Concepts from the literature on diagnosis acceptance are often insufficient or inappropriate at capturing lived experience, as reflected in the analysis of personal narratives. The understanding and interpretation of both the psychiatric diagnosis itself and the concept of acceptance are inherently individualised, highlighting the inadequacy of a simple ‘model’ or theory of acceptance to encompass the complexities of psychiatric vulnerability. Attitudes towards a diagnosis encompass multiple dimensions and are influenced by individuals’ perceptions, although we do not always understand how or where these perceptions are formed. Investigating these aspects to form a deeper understanding is essential in both research and practical individual clinical contexts. The necessity of diagnosis (or DSM classification) acceptance in fostering effective patient–clinician collaboration is uncertain in both existing literature and our empirical data. More important is the patient’s request for a co-constructed narrative, rather than having one imposed by the diagnosis. Rather than emphasising agreement with clinicians, a more fruitful approach might involve exploring patients’ unique experiences through their self-narratives and understanding the content and origin of the diagnosis narratives they hold. We urge researchers and clinicians to explore questions around diagnosis and diagnosis integration using a narrative approach.