A commitment to partnering with people with lived experience: Beginning conversations by exploring preferred language

Reflecting the value of consumer leadership and participation in research, it is now expected practice in occupational therapy research to partner with people with lived experience. In line with the expectations of those we work with and the values of the profession, the Australian Occupational Therapy Journal is committed to enhancing consumer engagement. The 2022 special issue ‘Partnering with consumers in care, research, and education’ which sought to spotlight co-designed research, practice, and education was an initial step in moving towards enhanced partnership. Following this, the journal's editorial board wanted to ensure future strategies to enhance consumer engagement were generated and decided by people with lived experience. The editorial board then partnered with a group of people with living/lived experience of disability, occupational therapy service use, health-care use and/or caring experience in a research project to develop and prioritise strategies the journal should enact. This research, which will be documented in a future paper, involved several rounds of discussion and a consensus technique with 10 consumer researchers resulting in four prioritised larger strategies and a number of smaller strategies, some of which have already been implemented in the journal. For example, the author guidelines now include the requirement that submitted articles' abstracts include a statement outlining how consumer and communities were partnered with or involved in the research, and plain English summaries will be introduced soon as a requirement of submission.

One key issue raised within these conversations illustrated the complexity of language in discussing these partnerships and engagement. Within occupational therapy research and dissemination, the language of lived experience is vital to reflect upon. Language is important because words have power—they reflect attitudes, express feelings, and influence societal perceptions, public policy, practice, and research (Ferrigon, 2019; Vivanti, 2020). Critically, there is a not a single preferred term, and everyone involved in the conversations about language found the discussion and exploration interesting and helpful. This suggested we needed to begin enacting the journal's commitment and action to exploring language and preferred terms. Throughout this editorial, varying terms have been used to refer to people with whom occupational therapists work. These are reflective of the range of terms the consumer researchers identified as personally preferred. These terms included ‘person with lived experience’, ‘person with living experience’, ‘expert by experience’, ‘person living with impairment’, ‘consumer’, ‘health consumer’, ‘occupational therapy service user’, ‘service consumer’, ‘consumer or patient advocate’, ‘patient’, ‘client’, and ‘participant’. The term ‘living experience’ was preferred over ‘lived experience’ by one consumer researcher as lived experience situates the person in the past tense and does not reflect the ongoing and dynamic expertise related to living with a health condition or disability. Some members of the research team with lived experience disliked the term consumer because it implies that the people whom occupational therapists work with are economic resources and that the desired outcome of our interactions is financial. Further, using ‘consumer’ was felt to trivialise mental illness—implying that it is not serious or warrants health-care intervention. The term was also perceived to desensitise the experience of disability, implying that the relationship between the person with living experience and an occupational therapist is a simple transaction when the everyday reality of life for people with disability is far from simple or easy.

‘Consumer’ is now widely used in Australia to refer to people receiving health and social care services. The term emerged in the United States in the 1980s from mental health advocates seeking to improve the rights of people receiving mental health services. It was chosen as it implied active decision-making in healthcare and aimed to empower consumers, shifting from the traditional provider directed model (Victorian Mental Health Illness Awareness Council, 2023). It is embedded within health-care standards, which indicate that partnering with consumers from individual treatments to health service design delivery requires a partnership approach (Australian Commission on Safety and Quality in Health Care, 2017).

‘Lived experience’ is a term which has emerged more recently and refers to the living (current) and lived (past) experience of being a consumer or carer and includes the experience of the health condition, illness, or disability and service use (National Mental health Commission, 2023). Lived experience was a preferred term for many in our research group. Similarly, the Victorian Mental Illness Awareness Council when asking consumers of mental health services in Victoria found their preferred terminology was diverse, but the most preferred language was ‘people with lived experience of …” (Victorian Mental Health Illness Awareness Council, 2023).

In our research group, a number of people also did not feel too strongly or did not mind what terms were used, rather the context of the situation and communicating with respect, including checking in with people on their preferences, were more important. The importance of context when considering language is represented in the literature, where ‘patient’ was found to be the preferred term in the majority of scoping review studies exploring labelling preferences for people accessing health-care settings internationally (Costa et al., 2019), although it should be noted the included studies were completed from 1990 to 2015. It is also important to reflect that across all terminology, people who use occupational therapy services have many other roles – people are not patients all the time, or only consumer, or lived experience experts. Many people, including occupational therapists, wear multiple hats and have varying types of expertise.

There was also discussion within the group about language regarding disability, with most preferring person first language, wanting to be known for who they are as a person first and not their disability. For example, person with a disability, or person living with their specific health condition or disability. Identity first language, however, is the preference of many people with disability. For autistic people in particular, identity first language is most often the preferred language representing the shift away from pathologizing neurodiversity (Botha et al., 2023; Foley & den Houting, 2020). However, one consumer researcher commented that terms portraying disability in a positive light, for example, ‘differently abled’ can be vague and misleading to the experience of living with a disability—that while it should not be seen as a negative, it also should not be seen as something positive or fun and that the challenges of living in an ableist world can be misunderstood with the use of positive terms like this.

In our discussions and considerations of language, what we have learnt overall is that there is no one right answer, that the language we use is context-specific, culturally influenced, and that preferences will continue to vary between individuals and groups. We must be comfortable with the diversity of perspectives, accept that we may occasionally get it wrong, and be cognisant of new terminology, knowing that language will change over time as discourse and values shift. Given this variability, there are some important principles that can be adopted in the dissemination of research. This includes firstly that people with lived experience need to be the decision-makers about language. Therefore, discussing language preferences with consumer researchers and/or with participants of the research is critical. Ultimately, where practicable and possible, research findings should be written in partnership with or led by consumer researchers. However, as consumer researchers in our group highlighted their contributions must be duly compensated and supported and within reasonable expectations given their interest, strengths, constraints, and skills. They also noted that there are often funding and timing barriers in place that restrict their involvement. It is also useful to make the reasoning for language use explicit in a publication; for example, in this editorial, person first language was used because it was the preferred term of the majority of participants. Identifying the positionality of the authorship team as much as authors are comfortable with sharing is also an important strategy so the readers can understand the context from which the publication is being produced—this is a strategy the Australian Occupational Therapy Journal will be implementing in due course. The authorship of this editorial includes three occupational therapy researchers, one with lived experience of disability, and six consumer researchers with lived experience of disability and caring.

We acknowledge that there are diverse perspectives on language use, and this editorial does not represent the voices of all people with disability or those receiving health and social care services. We hope that this article fosters discussions and reflection on language use in research and practice and engenders more active discussions within research teams and in particular with research participants and consumer researchers about the language used in research publications. This editorial is one of a number to be published throughout the year which will partner with or be led by authors with lived experience, aligned with our commitment to enhanced consumer engagement.

All authors contributed to the manuscript design and content, with the first author responsible for drafting the manuscript. The second, third and ninth authors contributed to the review and editing.

Tammy Aplin and Jacki Liddle would like to acknowledge their roles as Associate Editors for the Australian Occupational Therapy Journal.