CO-DESIGN AND SERVICE-USER EXPERIENCE


A hierarchy of belonging “Furniture layout and space arrangement played a significant role in shaping human relationships. Take, for instance, the cafeteria’s seating arrangement, which – reminiscent of high school social dynamics – inadvertently established a hierarchy of belonging. Despite this, genuine connections blossomed over shared struggles. Meaningful relationships and conversations emerged, providing a respite from our environment. With the constant ebb and flow of people, we exchanged stories, delving into who we were, how we found ourselves in that space, and the aspirations we held for the future. Amid darkness, the light of joy persisted, unyielding. Human joy, cultivated in shared circumstances, became the seed of resilience, reminding us that even in the bleakest moments, the potential for connection and camaraderie can never be extinguished. “In detox wards, witnessing the decline


of fellow patients highlighted the profound impact of the environment on the recovery process. From incandescent lighting and dysfunctional window shutters to anti-ligature hardware, uncomfortable bedding, and sugary snacks and drinks, the challenges to one’s psyche were abundant. However, the crucial role of staff care became evident, with compassionate techs exerting considerable influence on the recovery of patients. It’s essential to acknowledge that each patient’s journey is unique, and amid the difficulties and uncertainties, small acts of kindness and care can have profound impacts.”


l Stephen’s story “Mental illness and addiction has a long history in my family. My namesake is a family member who lost his life to addiction. My godfather was a Vietnam veteran who struggled in civilian life. My uncle combated addiction and depression, a legacy of his own father’s alcoholism. His health deteriorated as his depression deepened, leading to attempts to self- harm and admission to a psychiatric facility. My cousin suffered a similar fall to addiction, and its harm to our family is still being felt after her recovery. Many families and end-users I meet in my role designing mental health environments across the globe have similar stories, and often one degree of separation from similar experiences. “These stories and more led to my


interest in healthcare design, specifically given my buddies returning from serving abroad and their stories of PTSD and traumatic brain injury, namely the gaps in the US military health system that left they and their families wanting for compassionate care. This evolved into my role helping develop the (US Department of) Veterans Affairs’ new Inpatient Mental Health Design Guide, and it’s gratifying to see how design can play a role in the healing of those that suffer in silence. “My family history became our living


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reality when one of my parents was admitted to a behavioural health hospital for the first time. It started innocently enough; a lack of sleep induced by work stress and prescription for insomnia. It then spiralled into a mix of medications that saw delusion, paranoia, and major depression result. After two weeks trying to contend with increasingly combative behaviour, they were admitted to a mental health hospital for two weeks. A medication regimen and treatment plan took effect and things returned to normal for several years.


“In the spring months of this past year, the medication seemed to have no effect, and the paranoia came back, along with fatigue, forgetfulness, insomnia, and lack of appetite. Their weight had fallen from 150 pounds to less than a 100 in mere weeks.


A fall in the office “A fall in the office led to an emergency room visit, and 72-hour psychiatric hold in the same week of my first and only son’s birth. Needless to say, the timing of this second episode was crushing – a ripple effect of tragic consequence across the family once again reliving the first psychotic break. Unable to leave my nursing wife and newborn son in what was to be the happiest moments of my life, I had to hear second hand the uncertainty and emotion of my family’s most painful moments. It is a struggle to put these words to paper, but sharing helps even if I’m still not OK. “The inpatient mental health unit at a


general hospital setting was poorly suited to holistic healing. A multi-occupant inpatient room and having fellow patients exacerbate each other’s conditions was not helpful to healing. The staff seem ill-equipped for the situation, and the facility’s environment was lacking psychiatric-safe features, much less a humane and healing environment on many fronts.


“Seemingly in no time, the local staff


from my hometown hospital ordered 10-12 rounds of electroconvulsive therapy or ECT. This necessitated a move to a different facility hours away. “Having designed such spaces and mental health care environments for years, hearing those words chilled me. Often considered a last resort treatment, and described by many patients as ‘a sledgehammer’, I was shocked that no other options were seemingly considered. Not further dialectic therapies, medication regimes, TMS (transcranial magnetic stimulation) or other approaches. “Since we had only 15 minutes to visit


each day, with a maximum of two family members, my family rotated visitations each day and during treatment days. On treatment days, we could visit for one hour during ‘prep time’, and for 30 minutes after for post-operative observation. This was as much time as we could get, and was often in a triage bay with many other people around in addition to an observer. It was difficult to witness the treatment’s effects and try to forge a meaningful connection when your parent is strapped down to a gurney. “The visitation space was simply the


group room at the entrance to the locked unit, repurposed for three families to visit simultaneously. Besides the complete lack of privacy, the space had no windows, moulded plastic chairs, and little else. An observer watched from the door. It was far from ideal to see one’s parent in a state of psychosis and delusional paranoia for the first time. It was even more disconcerting to have them not acknowledge their new grandson’s existence. It was a heartbreaking experience that I wish no family had to endure.


“While Shahad and I had unique


experiences and traumas that continue to define our mental wellbeing, we are also designers. Sketching is a common language for us, and we found that it was something that helped us process our experiences. To draw out our trauma and work through the issues we faced, for an


FEBRUARY 2024 | THE NETWORK


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