Emotional experience probes: children and families personal views of life in hospital isolation
Children receiving stem cell transplants must be hospitalized in isolation for one to several months, while facing the realities of life-threatening illness and intensive medical treatment. It is a time of significant emotional and psychological distress, leaving many children with post-traumatic stress symptoms well past hospitalization. There is a lack of understanding of the patient emotional experience, and few proven interventions that address the issue of emotional wellbeing for this population. To this end, using a form of design probes, we are performing a needs assessment, collecting perspectives from patients and families concerning their emotional needs and stressors in the clinical isolation environment. Design probes are research tools that have been effectively used by designers to engage target user populations in playful, reflective activities that help them share personal views on a particular topic. They have been especially useful in situations where direct questioning is ineffective, or in emotionally strained environments. Activities within probes often include art and storytelling, which in other settings have been proven to be therapeutic. Our objective is to test the feasibility of adapting design probes to a clinical setting, as therapeutic patient emotional experience probes.
We hypothesize that clinically-adapted design probes, which facilitate playful, deep reflection, can effectively and therapeutically engage patients and families in sharing their past emotional experiences of isolation for stem cell transplantation. Specifically, we aim to evaluate the effectiveness of the probes in:
• Collecting information about (i) their emotional condition, (ii) their view of their circumstances and care experience, and (iii) their insights into redesigning the experience and isolation environment
• Acting as therapeutic interventions, positively impacting the emotional and psychological state of patients and families post-hospitalization
Pediatric patients, ages 5+, who received a stem cell transplant in the last 3 years at Lucile Packard Children’s Hospital, along with their siblings and parents, are invited to participate in 60-minute design sessions, as an effort to help improve isolation for other patients. They each receive a personalized activity kit, and complete reflective design activities of their choice, such as writing a letter to another patient/ family member. Participants discuss their projects with a mental health professional, and answer Likert scale survey questions that evaluate the probes for information collection and therapeutic intervention.
Through participatory design sessions, we have created an emotional experience probe with the help of patients and families who underwent stem cell transplantation >3 years ago. Both children and parents were highly motivated in the act of giving back to their patient community. This yielded a socially-motivated activity kit, presented as a gift, with the suggestion to make something for another patient/ family member. Participants also had a preference for open-ended activities. Thus we created a set of idea cards that provide prompts with broad creative latitude in project areas, covering aspects of art, narrative, imaginative thinking, design problems, and hospital feedback. We have designed age-appropriate survey questions to evaluate the probes, and are preparing to launch the study in late spring.