This study aimed to understand the experiences and views of children with cerebral palsy, their parents and physiotherapists participating in the ACCEPT feasibility randomised controlled trial, which explored a 10-week physiotherapy intervention using an interactive gaming training device.
Qualitative methods included semi-structured interviews, e-diary and photographs. Nine parent–child dyads and three physiotherapists participated. Children were aged between 7 and 16 years; four had co-existing additional needs. Interviews were transcribed. Reflexive thematic analysis was used.
Five themes covered the breadth of participants’ experiences: (1) Fitting in therapy; (2) Motivation; (3) New opportunities; (4) Physiotherapists out of their comfort zone; and (5) Altruism and challenges.
Parents spoke of the challenge of finding time to engage their children in therapeutic exercise. Several children talked about trial-related procedures (e.g. removal of adhesive markers) that they disliked. Physiotherapists, children and parents supported the gaming aspect of the device to improve motivation to exercise.
Overall, the intervention and measures were acceptable to children and parents. Parents were willing to accommodate the device for 10 weeks and children found the gaming aspect both motivating and enjoyable. Physiotherapists required more support to solve technical problems with the device. A full trial evaluating the device requires additional technical support from the supplier and experienced ‘champion’ users. Exercise trainers that encompass gaming may increase motivation and adherence to therapeutic programmes.
Children, families and care givers were included in the study design. They helped to produce participant facing documents including the e-diary and interview topic guides. The study steering committee included several parents and one teenager, and provided governance and oversight of the project.
Individuals living with a complex or rare chronic disease live a life where the use of healthcare services and self-care are part of their quotidian and even of their identity. They may, as a result, experience significant psychological distress. Yet, specialized healthcare providers (HCPs) who manage their care are often ill-equipped to respond to the emotional or social dimensions of their patients' illness and intervene in a meaningful way.
In this paper, we report on the process and outcomes of a living ethics project, structured as a living lab. The living lab followed a five-phase methodology, each phase involving various research methods (e.g., semi-structured interviews, group interviews) and oriented toward distinct tasks: identifying the issue (phase 1: problem identification), deepening understanding (phase 2: problematization), co-developing interventions (phase 3: ideation), implementing them (phase 4: enactment), and evaluating the interventions and the overall process (phase 5: evaluation).
Phase 1 led to the identification of neglected psychological distress of patients as an important ethical issue. Phase 2 exhibited causes and consequences of psychological distress. Phase 3 led to the co-development of: (1) an electronic medical appointment preparation form for patients, aimed at guiding medical consultations based on their specific needs, facilitating communication, and opening discussions about mental health; (2) a directory of mental health resources intended for clinic staff to better equip them in addressing the mental health of patients; and (3) mental health awareness posters with catchy slogans strategically placed throughout the clinic to raise awareness about mental health and encourage open discussions. Phase 4 led to the implementation of these interventions and phase 5 to their evaluation. All interventions were evaluated positively as well as the participatory nature of the research project while many core aspects of living ethics were furthered.
This project shows that directly engaging stakeholders in ethics research, by addressing the moral issues they deem significant and working with them to tackle those issues rather than conducting research on them, can lead to tangible, unexpected, and positive moral and clinical outcomes, even within a short timeframe and with limited resources.
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