A Participatory Model for Cocreating Accessible Rehabilitation Technology for Stroke Survivors: User-Centered Design Approach.

Background: Globally, 1 in 3 people live with health conditions that could be improved with rehabilitation. Ideally, this is provided by trained professionals delivering evidence-based dose, intensity, and content of rehabilitation for optimal recovery. The widely acknowledged inability of global health care providers to deliver recommended levels of rehabilitation creates an opportunity for technological innovation. Design processes that lack close consideration of users' needs and budgets, however, mean that many rehabilitation technologies are neither useful nor used. To address this problem, our multidisciplinary research group have established a cocreation center for rehabilitation technology that places the end user at the center of the innovation process. Objective: This study aims to present the participatory cocreation model that has been developed from our center and illustrate the approach with 2 cases studies. Methods: The model is built around user participation in an intensive rehabilitation program (2-hour sessions, 2-5 times per week, and 8-week duration), supervised by qualified therapists but delivered exclusively through commercial and prototype technology. This provides participants (chronic stroke survivors with movement and/or speech disability) with a rich experience of rehabilitation technology, enabling them to provide truly informed feedback, as well as creating an observatory for the research team. This process is supported by short-term focus groups for specific product development and a longer-term advisory group to consider broader issues of adoption and translation into everyday health care. Results: Our model has been active for 3 years with 92 (92%) out of 100 participants completing the program. Five new technologies have evolved from the process with further ideas logged for future development. In addition, it has led to a set of cocreated protocols for technology-enriched rehabilitation, including recruitment, outcome measures, and intervention structure, which has allowed us to replicate this approach in an acute hospital ward. Conclusions: Suboptimal rehabilitation limits recovery from health conditions. Technology offers the potential support to increase access to recommended levels of rehabilitation but needs to be designed to suit end users and not just their impairment. Our cocreation model, built around participation in an intensive, technology-based program, has produced new accessible technology and demonstrated the feasibility of our overall approach to providing the rehabilitation that people need, for as long as needed.

Family members' perspectives on the acceptability and impact of a co-facilitated information programme: the EOLAS mental health programme.

BACKGROUND: Despite the critical role families play in the care and recovery journeys of people who experience enduring mental distress, they are often excluded by the mental health services in the care and decision-making process. International trends in mental health services emphasise promoting a partnership approach between service users, families and practitioners within an ethos of recovery. OBJECTIVE: This paper evaluated the acceptability of and initial outcomes from a clinician and peer co-led family information programme. METHODS: A sequential design was used involving a pre-post survey to assess changes in knowledge, confidence, advocacy, recovery and hope following programme participation and interviews with programme participants. Participants were recruited from mental health services running the information programme. In all, 86 participants completed both pre- and post-surveys, and 15 individuals consented to interviews. RESULTS: Survey findings indicated a statistically significant change in family members' knowledge about mental health issues, recovery attitudes, sense of hope and confidence. In addition, the interviews suggested that the programme had a number of other positive outcomes for family members, including increased communication with members of the mental health team and increased awareness of communication patterns within the family unit. Family members valued the opportunity to share their experiences in a 'safe' place, learn from each other and provide mutual support. CONCLUSION: The evaluation highlights the importance of developing information programmes in collaboration with family members as well as the strength of a programme that is jointly facilitated by a family member and clinician.

Outcomes of a co-facilitation skills training programme for mental health service users, family members, and clinicians: the EOLAS project.

Health policy is increasingly advocating for involvement of service users and family members in service development. In the present study, we evaluated the impact of a 4-day education programme in co-facilitation skills on clinician and peer (service users and family members) knowledge, confidence, and subsequent experience as co-facilitators. The programme was designed to train peers and clinicians as co-facilitators on a clinician and peer-led information programme for people experiencing mental health problems. The study employed a mixed-methods design involving a pre-post survey with 128 participants, and follow-up qualitative interviews with a sample of 17 participants. To examine changes in levels of knowledge and confidence in facilitating from time 1 (T1) to time 2 (T2), paired sample t-tests were conducted, and thematic analysis was conducted on the interviews. The programme had a statistically-significant positive impact on participants' knowledge, confidence, and skills, with no significant difference between the facilitator groups (i.e. service user, family member, and clinician) in terms of their improvement at the end of the training, indicating that all groups benefited equally from the training. A majority of participants reported a high level of preparedness as co-facilitators and an open and respectful approach towards each other's expertise, and many continued to gain skills and develop their confidence as they co-facilitated the 8-week EOLAS programme ('eolas' is the Irish word for knowledge). The findings also provide evidence of the acceptability and feasibility of the programme, and appears to be the first detailed study reported on a programme of this nature.

Pharmacokinetics and pharmacodynamics of methadone enantiomers in hospice patients with cancer pain.

Racemic methadone is increasingly used to manage cancer pain. The authors studied 13 terminally ill patients with cancer pain, who underwent switching (rotation) from morphine to methadone. The relationship between initial morphine dose and final methadone dose, the pharmacokinetics of R- and S- methadone, and the degree of pain control and side effects were investigated. Preswitching serum morphine concentrations and second daily plasma concentrations of methadone were measured. The brief pain inventory (BPI) was used to assess pain every second day. "Worst pain" as measured by the BPI improved by >/=20% in 6 of the 13 patients. The mean morphine to methadone conversion ratio was 5.2 with wide interpatient variability (range 1.3 to 11). Average steady-state concentrations were 197 (98 to 379) mug/L and 272 (55 to 378) mug/L for R- and S-methadone, respectively. Mean population pharmacokinetic parameters for a 1-compartment model were 455 L and 338 L for apparent volume of distribution and 53.3 hours and 31.5 hours for half-life for R- and S- methadone, respectively. Bayesian estimates of apparent oral clearance for individual patients were 0.082 (0.052 to 0.112) L/kg/h and 0.117 (0.061 to 0.173) L/kg/h for R- and S- methadone, respectively (mean and 95% confidence interval). The low and variable clearance values generally resulted in slow achievement of steady-state concentrations over several days; inappropriately high plasma methadone levels occurred in 1 patient. Whereas optimal pain control was achieved in 46% of patients, there was no relationship with plasma concentrations of methadone. Best practice for methadone use in this patient group should include monitoring of both pain and methadone concentration.