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Experience is central and connections matter: A Leximancer analysis of the research priorities of people with lived experience of mental health issues in Australia [1]
['Michelle Banfield', 'The Alive National Centre For Mental Health Research Translation', 'The University Of Melbourne', 'Melbourne', 'Victoria', 'Centre For Mental Health Research', 'The Australian National University', 'Canberra', 'Australian Capital Territory', 'Amelia Gulliver']
Date: 2024-06
The age range for all respondents was from 20 and 93 years old, and most respondents were female (n = 280, 77%). There were responses from people across all states and territories of Australia, though over half of respondents were located in Victoria or New South Wales. Two-thirds of respondents were from metropolitan areas (MM1), but all MMM remoteness categories were represented.
Participants were invited to share how they described their own mental health, or the mental health of the person they care for, in their own terms. The majority of participants listed more than one mental health condition or descriptor. Responses included diagnostic terms such as depression, anxiety, complex post-traumatic stress disorder, borderline personality disorder, obsessive compulsive disorder, bipolar disorder, schizophrenia and schizoaffective disorder; many respondents also listed other terms such as stress, grief, family violence and suicidality, or chose to use descriptors such as “complex,” “unmet long term [needs]” and “exhausting”.
By closing date of the survey there were 510 responses. Of these, one person declined consent, 26 did not identify as someone with lived experience, and 118 did not list any research priorities. A total of 365 people who identified as either consumers, carers, or with experience of being both consumer and carer contributed at least one research priority. There were some instances where people had listed more than one research priority within an individual text box response: these instances were reviewed, and the priorities were separated out for inclusion in the analysis. The result was 1,294 research priorities shared by people in response to the request “Please share three things that mental health research should focus on.” As shown in Table 1 , of the 365 contributors, 207 (57%) identified as being consumers, 52 (14%) as carers and 106 (29%) as both consumer and carer. As such, in presenting illustrative quotes there may be a weighting in favour of responses from consumers and people who identified as both.
As final examples to illustrate these distinctions between how interconnected and interrelated concepts may be interpreted further, it is possible to see that treatment is connected with concepts of appropriate and medication, and the concept of care is connected with distinctive priorities for physical [health care], and children. The connected but separate nature of these concepts indicated distinctive priorities for research on each of these topics. This contrasts with the concepts related with recovery. Recovery is a priority, but is conceptually understood with relation to family, suicide, practices and lived experience. However, while unsurprisingly treatment and peers are interrelated, with peers separated from other concepts this showed that this remains a distinctive research priority for people.
Another core interrelated concept for impact is trauma, which is positioned as connected but separate from impact. Hence, it is possible that from a viewpoint of the map that trauma is a distinct priority area from the interrelated concepts of the impact of illness and society.
Travelling back up the grey line from work, there is an interrelationship shown between stigma and work with social, life and impact. Again, building on the story just presented, this indicated that work, distress and stigma were concepts of importance that may also be interrelated with the concepts of better and family and recovery. However, it is important to highlight that system sits independently, connected to work but not interrelated with social, life and impact. Again, this indicated that conceptually stigma and work and the interaction with the concept of system were priorities for people, but these were distinct from the ways that work, social, life and stigma, and impact were discussed.
Within the overlapping areas of stigma and impact, system appears as an independent research priority connected with work, but looking at the grey line we can see that this discussion about work was also interrelated with concepts of distress and stigma. Thus, from a view point only of the map and not considering the textual responses that were given, it is possible to interpret that work may be associated with distress and stigma for people with lived experience in ways that make this an important priority for research.
Journeying across the conceptual grey lines made it possible to determine which concepts were interconnected and which were interrelated in the textual responses. For the purposes of this analysis, the differences between interconnected and interrelated concepts might be best understood as: interconnected concepts representing distinctive priorities, compared with interrelated concepts that showed priorities across many different aspects of the textual responses. Interconnected concepts typically appeared as offshoots from a main concept (indicated by size) and might end after one or two concepts were shown together. For example, from the central concept of lived experience, it was possible to establish the connection between ‘lived experience and education’ and ‘lived experience and community’. The positioning of these concepts near to lived experience on the map is important as it showed that these priorities mattered for people in their responses as related to experience; however, being interconnected means these were concepts that were independent and distinctive of others in the text. These independent and distinctive priority areas were also seen in the connection between ‘experience and therapy and access and services.’ Here therapy, access and services were not discussed in relation with other concepts and thus these can be said to have reflected distinctive priorities for people once again for mental health research.
Fig 2 shows the final Leximancer map for concepts and themes as grouped by Leximancer analysis. Following the heat mapping approach, the prominent themes and concepts within the text were: experience (red), treatment (brown) impact (green), stigma (blue/green), peer (blue) and trauma (purple). In Fig 2 it is also possible to see how the themes (priority areas) and concepts (priorities) overlap. For example, concepts talked about within experience overlap with treatment, such as community, family and appropriate. However, other experience concepts may be independent of treatment (such as education, therapy and access to services). Concepts of stigma and impact are also interconnected with experience. These indicate that underlying mechanisms for what needs to be targeted include an interrelationship with experience.
From a conceptual point of view to understanding the meanings underpinning the priorities for people with lived experience
As described in the overview of the maps generated by the Leximancer analysis, the themes that showed the conceptual groupings of interconnected and interrelated concepts indicated six main priority areas for research for consumers, carers and consumer/carers: experience, treatment, impact, stigma, peer/s and trauma. For a deeper understanding of the meaning and connection than suggested by the maps alone, it is necessary to explore how participants phrased their priorities. The source of each quote below is identified as from a consumer, carer or someone with both experiences, followed by their reported gender and age where available. The full list of priorities as shared by participants is available in a searchable database on our digital platform [16], including some basic demographics and tags to allow searching by groups and topics.
One example to illustrate diversity of interrelated meanings is in further consideration of how experience and lived experience were discussed in responses. One person’s response was to research, “recovery experiences and progress after a critical incident” (Consumer, Female, 71), and another referred to research priorities as “sharing experiences for understanding [their] condition” (Consumer, Female, 41). However, in many cases, research priorities extended to connected concepts and intersections: “experiences of people with intersectional experiences in terms of mental health. Inclusive of situations where people have suicidal ideation (in intense pain) but no plan” (Consumer, Female, 45); “intersection of sexual violence and mental ill-health” (Consumer, Female, 27). Each of these examples illustrate the central importance of experience as a mental health research priority, but with the final two demonstrating how experience also connected with other concepts in this area.
The importance of lived experience as a strongly interrelated research priority was further illustrated in the intersection of experience and access to services, as people described “managing the knife edge walk between lived experience strength-based self-image and the change resistant pathology filter to access services” (Both, Female, 70); and “the qualitative evidence of experience and support services” (Consumer, Male, 30). People’s responses also demonstrated the complex interrelationships across multiple themes and concepts, including traversing experience, impact and peer to prioritise “greater workplace and access needs for people with lived experience” (Both, Female, 53) and needing to “compare services delivered within lived experience workforces versus services without a lived experience workforce.” (Consumer, Male, no age). These examples illustrate that when priorities are reduced to short thematic statements or priority areas combined for ranking, we risk overlooking the nuanced connections and meanings that people with lived experience see as centrally important.
This issue was also one that emerged in the context of treatment as a priority area. For example, when discussing treatment and experiences, some people referred to simply wanting better, more effective, responsive or non-pharmacological options. However, there was also reference to more specific issues, such as to focus on “research into long term side effects of medication which could lead to better medication” (Consumer, Female, 47), and the importance of “long term treatment. Not just six funded consultations and then see you later” (Both, Female, 72). As for experience, responses also demonstrated the connections between concepts and themes shown in the maps, with responses that traversed many interrelated concepts such as “the potential for combining mental health and chronic pain treatment for more holistic management” (Both, Female, 28); “effectiveness of various treatments for trauma” (Carer, Female, 74); and “the importance of family and carers in the support plan was important as families and carers are cut out and the focus is all on the younger person which disconnects them further from the people who care for them” (Both, Female, 55). Treatment and recovery were also conceptually interrelated, but this reflected a holistic view of recovery that encompassed social issues. People described “consumer participation in planning and the impacts on recovery” (Consumer, Female, 55), the “societal factors that impact recovery for example housing stability, poverty and discrimination” (Both, Female, 29) and prioritised “the impact of social prescribing on mental health recovery” (Consumer, Female, 58).
Some priorities in treatment also connected with concepts of care and physical [health], but as illustrated by the maps, these connections tended to reflect more distinct individual priorities. People suggested that there needed to be “more emphasis on physical health” (Both, Male, 80), research into “the effects of treating mental and physical health as different entities” (Both, Female, 55), and “affordable physical activity, nutrition, sleep, employment support that is designed for people living with mental illness” (Consumer, Female, 44). Interrelated concepts focused on the complexities of having co-occurring conditions, including “trauma and co-morbid physical health issues” (Consumer, Prefer Not to Say, 26), with one person reflecting on the difficulties of access to care: “how to get help for mental illness when you also have a physical disability and your care needs are too high for a psychiatric admission and you can’t get help for psychiatric problems on a general ward of the hospital” (Consumer, Female, 40).
Within the impact theme, there were some priorities that were standalone concepts, including “how poor clinical workplace culture impacts on mental health consumers and what needs to change” (Consumer, Male, 27), “the impact of psychiatric and psy professions and coercion, paternalism and violence” (Both, Female. 49), and “how communication around mental health/illness impacts those with chronic/complex mental health, for example, lots of discussion around depression is focused on episodic depression, which can alienate those with chronic depression or mood disorders.” (Consumer, Use another term, 30). However, many responses reflected strong reciprocal relationships between concepts. One example was to explore “mental health and work and the relationship between and impact of each on one another” (Both, Female, 28). Reference was also made to research prioritising “the mental health peer workforce in Australia and its impact and effectiveness” (Consumer, Male, 26) and “societal impacts” (Carer, Male, 54). Other areas of intersecting impacts included financial impacts, lack of resources, poverty, gendered impacts on mental health, the impact of COVID on kids and young people (children in the map), ways to prevent isolation, impacting changes to child protections policies, and the “mental health impact for carers” (Carer, Female, 44). The link between impact and trauma was particularly salient, with people suggesting “prevention of long lasting impacts from trauma” (Consumer, Female, 61), “understanding how trauma causes mental ill-health” (Consumer, Female, 27), the “influence of trauma on diagnosed mental illnesses” (Consumer, Prefer Not to Say, 26) and research that explains “the effects of trauma” (Consumer, Female, 50) and “childhood trauma” (Both, Female, 65) were important priorities.
In relation to stigma people referred to the need to remove, ease, reduce, lessen and challenge stigma as distinct priorities. However, the interrelations of concepts in this theme that are illustrated in the maps were reflected in the nuanced ways people suggested research should contribute to these actions. People were particularly interested in how experiencing stigma affects people, and suggested that mental health research should focus on “how did you feel about the stigma applied to you.” (Consumer, Female, 46), and should “explain the distress of experiencing stigma in the mental health system and work place” (Consumer, Female, 50). Of note was the view that it was key to “[research] the stigma of mental health in the community without resorting to separating people without one, and [be] inclusive rather than exclusive” (Consumer, Male, No Age).
For peer the “connection and belonging” (Consumer, Female, 37) provided by peer groups was important, and the use of peer workers for “breaking the poverty cycle” (Both, Female, 46) was an additional distinct research priority. Consumers also referred to the importance of implementation of peer workers for case management and for named conditions such as psychosis, with some noting that they would specifically like research to prioritise “how lived experience workforce impacts people at early stage of diagnoses” (Consumer, Female, 33). Research priorities also reflected a desire for research to explicitly explore roles, value, impact and positioning within systems. People suggested research into “the role and value of peer workers” (Both, Female, 52), “peer led models and the impact it makes” (Both, Female, 30) and “what forms of lived experience involvement actually affect practice (in clinical and policy settings)? What structures and avenues of lived experience involvement make the biggest impact and show engagement substantively rather than tokenistically” (Both, Male, 28). Thus, although this theme was amongst the smallest and lowest in prominence on the heat map, there was still significant complexity to the underlying priorities.
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[1] Url:
https://journals.plos.org/mentalhealth/article?id=10.1371/journal.pmen.0000010
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