‘Outside the Original Remit’: Co‐production in UK mental health research,lessons from the field

The aim of this discursive paper was to explore the development of co‐production and service user involvement in UK university‐based mental health research and to offer practical recommendations for practitioners co‐producing research with service users and survivors, informed by an overview of the key literature on co‐production in mental health and from a critical reflection on applied research through the medium of a case study. The paper is co‐written by a mental health nurse academic and a service user/survivor researcher academic. The authors argue that the implications of co‐production for mental health research remain underexplored, but that both the practitioner and service user/survivor researcher experience and perspective of co‐production in research can provide practical reflections to inform developing research practice. The theories and values of emancipatory research can provide a framework from which both practitioners and service users can work together on a research project, in a way that requires reflection on process and power dynamics. The authors conclude that whilst co‐produced investigations can offer unique opportunities for advancing emancipatory and applied research in mental health, practitioner researchers need to be more radical in their consideration of power in the research process.     

Patient participation in pro re nata medication in psychiatric inpatient settings: An integrative review

Pro re nata (PRN) medication is widely used and studied in psychiatric care, but our knowledge about patient participation in its administration is fragmented. The aim of this integrative review was to describe and synthesize previous knowledge of patient participation in PRN in psychiatric inpatient settings. We conducted both electronic and manual searches, using the CINAHL, Scopus, PsycINFO, and PubMed databases, and eight scientific journals. Searches were limited to the English language, to the years 2006–2016, and to selected papers using inclusion, exclusion, and quality criteria. We identified 16 relevant papers, and these showed that patient participation included patient‐related starting points, including the patients’ willingness to participate and their knowledge of the medication. The patients’ participation in PRN practices was demonstrated by the opportunity to request PRN and to refuse any PRN that was offered. Patient participation was shown to be linked to certain situations where PRN was recommended. The role that the professionals played in patient participation included interacting with patients, providing counselling and alternatives for PRN. Our results also revealed that coercion was used administering PRN. The existing literature exposed challenges that need to be addressed if patient participation in the use of PRN medication is to be effectively achieved in psychiatric inpatient settings. Equal partnerships between patients, nurses, and physicians are an essential part of this process, and further research into PRN medication is urgently needed, particularly studies that focus on patients’ experiences.     

Improving exchange with consumers within mental health organizations: Recognizing mental ill health experience as a ‘sneaky,special degree’

Stigmatizing views towards consumers may be held even by those working within mental health organizations. Contemporary mental health policies require organizations to work collaboratively with consumers in producing and delivering services. Using social exchange theory, which emphasises mutual exchange to maximise benefits in partnership, the current study explores the perspectives of those working within organizations that have some level of consumer leadership. Interviews were conducted with 14 participants from a range of mental health organizations. Data were transcribed, and analyzed using thematic analytic and discursive psychological techniques. Findings suggest stigma is still prevalent even in organizations that have consumers in leadership positions, and consumers are often perceived as less able to work in mental health organizations than non‐consumers. Several discourses challenged such a view – showing how consumers bring value to mental health organizations through their expertise in the mental health system, and their ability to provide safety and support to other consumers. Through a social exchange theory lens, the authors call for organizations to challenge stigma and promote the value that consumers can bring to maximize mutual benefits.     

The effects of mutual goal-setting practice in older adults with chronic illness

Goal setting is a strategy that can enhance performance. The purpose of this study was to examine how engaging older adults with chronic illness in setting goals for their care would affect their performance in achieving those goals. This study employed a quasi-experimental design with repeated measures to evaluate the effect of an intervention, namely mutual goal-setting (MGS) practice, on elderly patients with chronic illness. Eighty such patients receiving nursing care at home were recruited for the study. Repeated measures showed that the intervention group achieved a higher percentage of their goals, though insignificant group and time interaction effects between groups were found in perceived functional disability, perceived functional health and self-efficacy in self-managing chronic illness. The findings of this study with a specific group, namely elderly patients with chronic illness, support the general premise that patients who participate in determining their care are more likely to improve in physical and mental well-being.     

Pain management for children with cerebral palsy in school settings in two cultures: action and reaction approaches

Background: Children with cerebral palsy (CP) face particular challenges, e.g. daily pain that threaten their participation in school activities. This study focuses on how teachers, personal assistants, and clinicians in two countries with different cultural prerequisites, Sweden and South Africa, manage the pain of children in school settings.

Method: Participants’ statements collected in focus groups were analysed using a directed qualitative content analysis framed by a Frequency of attendance-Intensity of involvement model, which was modified into a Knowing-Doing model.

Results: Findings indicated that pain management focused more on children’s attendance in the classroom than on their involvement, and a difference between countries in terms of action-versus-reaction approaches. Swedish participants reported action strategies to prevent pain whereas South African participants primarily discussed interventions when observing a child in pain.

Conclusion: Differences might be due to school- and healthcare systems. To provide effective support when children with CP are in pain in school settings, an action-and-reaction approach would be optimal and the use of alternative and augmentative communication strategies would help to communicate children’s pain. As prevention of pain is desired, structured surveillance and treatment programs are recommended along with trustful collaboration with parents and access to “hands-on” pain management when needed.

• Implications for rehabilitation

• ??When providing support, hands-on interventions should be supplemented by structured preventive programs and routines for parent collaboration (action-and-reaction approach).

• ??When regulating support, Sweden and South Africa can learn from each other;

• ○?In Sweden, the implementation of a prevention program has been successful.

• ○?In South Africa, the possibilities giving support directly when pain in children is observed have been beneficial.

     

“I do like the activities which I can do…” Leisure participation experiences of children with movement impairments

Aim: To explore in depth the leisure participation experiences of children with movement impairments.

Methods: We used Interpretative Phenomenological Analysis approach to interpret and understand the experiences of 22 children with movement impairments, aged between 6 and 12?years. Children expressed their views through flexible child-centred methods of data collection that allowed the children to draw, paint, use stickers, and demonstrate their leisure activities and equipment while communicating about their experiences.

Results: Children participated in leisure activities of their choice, and expressed positive experience of fun, challenge, independence and achievement. The choice of activities depended on a combination of the motor functioning of the individual child, inspiration and support from families, friends and health professionals, as well as the possibility of adaptations and availability of community programmes. At times children felt disappointed and avoided some activities due to associated negative experience such as injury, fear, non-inclusion and the difficulty they had experienced in adapting and performing certain activities.

Conclusion: Families, therapists and community service providers such as disability organisations could enhance leisure participation experiences by suggesting and creating opportunities that could increase children’s choices of leisure activities.

• Implications for rehabilitation

• Children’s choice of activities, places and friends is important for positive experiences of fun, achievement, challenge, independence and motivation in leisure participation.

• Families and health professionals could assist children make appropriate choices for leisure activities that depends on factors such as motor abilities, adaptations and availability of activities in the community.

• In the community, widening the options for leisure activities such as non-competitive adaptive sports and indoor sports for children with variable levels of movement impairment could improve leisure participation experiences.

     

Maximizing gait and balance: behaviors and decision-making processes of persons with multiple sclerosis and physical therapists

Purpose: To describe the behavioral decisions used by persons with multiple sclerosis (MS) and physical therapists to maximize gait and balance following outpatient physical therapy.

Methods: A multi-method case series with seven matched pairs (persons with MS–physical therapists). Quota sampling maximized variability among persons with MS (disease steps score range 3–6). Three of the four physical therapists were MS or neurology certified. Persons with MS completed a phone survey, follow-up interview, and standardized questionnaires. Physical therapists completed an interview. Data were collected 2–8 weeks following discharge. Content and constant comparison analyses were used for thematic development and triangulation.

Results: Core themes arose exemplifying the decision-making processes and actions of persons with MS (challenging self by pushing but respecting limits) and physical therapists (finding the right fit). One overarching theme, keeping their lived world large, or participation in valued life roles, emerged integrating both perspectives driving decision-making.

Conclusions: Participants have a shared goal of maximizing gait and balance so persons with MS can participate in valued life roles. Understanding the differences in the behavioral decisions and optimizing skill sets in shared decision-making and self-management may enhance the therapeutic partnership and engagement in gait- and balance-enhancing behaviors.

• Implications for Rehabilitation

• Persons with MS and physical therapists have a shared goal of maximizing gait and balance so persons with MS can participate in valued activities and life roles, or more poetically, keep their lived world large.

• Knowledge that persons with MS aim to challenge themselves by pushing but respecting limits can provide physical therapists with greater insight in helping persons with MS resolve uncertainty, set meaningful goals, and build the routines and resilience needed for engagement in gait- and balance-enhancing behaviors.

• Enriching skill sets in shared decision-making, behavior change and self-management may optimize the physical therapist toolbox.

     

The development of a patient-specific method for physiotherapy goal setting: a user-centered design

Purpose: To deliver client-centered care, physiotherapists need to identify the patients’ individual treatment goals. However, practical tools for involving patients in goal setting are lacking. The purpose of this study was to improve the frequently used Patient-Specific Complaints instrument in Dutch physiotherapy, and to develop it into a feasible method to improve physiotherapy goal setting.

Methods: An iterative user-centered design was conducted in co-creation with the physiotherapists and patients, in three phases. Their needs and preferences were identified by means of group meetings and questionnaires. The new method was tested in several field tests in physiotherapy practices.

Results: Four main objectives for improvement were formulated: clear instructions for the administration procedure, targeted use across the physiotherapy process, client-activating communication skills, and a client-centered attitude of the physiotherapist. A theoretical goal-setting framework and elements of shared decision making were integrated into the new-called, Patient-Specific Goal-setting method, together with a practical training course.

Conclusions: The user-centered approach resulted in a goal-setting method that is fully integrated in the physiotherapy process. The new goal-setting method contributes to a more structured approach to goal setting and enables patient participation and goal-oriented physiotherapy. Before large-scale implementation, its feasibility in physiotherapy practice needs to be investigated.

• Implications for rehabilitation

• Involving patients and physiotherapists in the development and testing of a goal-setting method, increases the likelihood of its feasibility in practice.

• The integration of a goal-setting method into the physiotherapy process offers the opportunity to focus more fully on the patient’s goals.

• Patients should be informed about the aim of every step of the goal-setting process in order to increase their awareness and involvement.

• Training physiotherapists to use a patient-specific method for goal setting is crucial for a correct application.