Co-authoring: creating mental health information, about, for and with older people

MindEd (minded.org.uk, Health Education England, 2018) is a free, widely used, online learning resource about mental health, available world-wide. It is mainly National Health Service (NHS) funded. Since 2014, MindEd has produced 350 e-learning sessions, principally about mental health of children and young people. From these, professional and lay audiences have completed approximately 200,000 20–30-minute learning sessions. MindEd is accredited with the NHS England Information Standard (NHSIS) which requires public participation in creating resources. MindEd sessions are authored by an expert author (e.g., nurse or psychiatrist) and a lay co-author, who ensures that the content is informative and empowering, with clear and appropriate language for a lay readership. Co-authors participate at all stages, from initial draft to reviewing the built e-learning session. Evaluations of co-authoring with older people have not been identified. This letter reports on an evaluation of Mind-Ed co-authoring with older people.

In 2017–8 MindEd created 20 sessions about older people’s mental health, for older people themselves and those who care about and for them (https://mindedforfamilies.org.uk/older-people/). Older people increasingly use the internet (Office for National Statistics, 2018) but accessible, relevant and reliable mental health information is hard to find. This project supported NHS goals to improve awareness and diagnosis of older people’s mental illnesses other than dementia. High-quality information (health literacy) is also needed for patients to understand their illness, explain their priorities to clinicians, and make health-related decisions (Department of Health, 2008).

To recruit co-authors, MindEd approached voluntary organisations that prioritise the interests of older people. Some were cautious, desiring to protect older people from discussing potentially distressing subjects with domineering health service professionals. MindEd finally recruited co-authors through University of the Third Age (U3A.org.uk); co-authors received a small honorarium, on completion of the project.

While recognising that computer use among people over 75 years is associated with higher social class and educational level, and that U3A might not represent the full range of potential e-learning users, they were as representative as possible e.g., gender, ethnicity, disabilities, ages up to 84 years. Some were former patients, or had family or friends with psychiatric problems. Others saw it as a mental challenge some years after retirement, “Did my brain still function; could I cope with track changes!?” Co-authors indicated their topic preferences and were matched with the relevant author (most UK, one Australia). Training was provided and support offered throughout the project.

We requested feedback. Questions were open and qualitative, about whether co-creating was rewarding, and what participants liked and did not like. Eight authors and 13 co-authors responded. Individual responses often contained a range of likes and dislikes. Most co-authors found the process easy to grasp, “new and interesting,” and “very rewarding.” Some found editing by e-mail tedious, missing the “round-the-table, face-to-face element.” They were generally confident critiquing and creating the text, but some authors and co-authors felt out of their depth during the technical building of the e-learning.

Co-authors valued learning about the subject from an expert. Most co-authors reported that communication was easy, and that authors were non-judgmental. One commented about his author: “a highly eminent academic…I was very pleased that talking to him was very easy and unintimidating!”

For some co-authors, relying on e-mail prevented them getting to know the authors. One co-author was uncomfortable “responding critically to the work of someone I had not in any sense met, someone whose personality and levels of vulnerability I had no chance of assessing, and to whom I had had no chance of conveying my goodwill and integrity.” Brief phone calls did not overcome this, but some found longer calls (e.g., 2 hours) useful.

From the authors’ perspective, co-authors added to the e-learning material by sharing personal stories, recommending books, making content and language more meaningful and useful, identifying terms which needed explaining, and indicating how readers might interpret it.

Authors perspectives on the collaborative process ranged from “really positive…allowed the writing to become a process of evolution” to exasperation: “if it was a professional colleague I wouldn’t have [had] to be particularly mindful about my response.” For some, co-authoring challenged the them-and-us model, creating instead a model about “us.” Some co-authors found the experience anxiety-provoking. Others enjoyed being part of a team, feeling valued, learning about mental health and digital working, and “would do it again even if money were not involved!”

In summary, age is no bar to digital working and electronic editing. However, relatively impersonal digital collaboration may be challenging for people who previously worked face-to-face. That some organisations which MindEd approached to recruit co-authors, and some older co-authors, expressed expectations of encountering judgmental and domineering NHS staff, means that we also need to consider and investigate why such views of the caring professions perpetuate.