Exploring Elinor Ostrom's principles for collaborative group working within a user-led project: lessons from a collaboration between researchers and a user-led organisation.

BACKGROUND: Some research has been undertaken into the mechanisms that shape successful participatory approaches in the context of efforts to improve health and social care. However, greater attention needs to be directed to how partnerships between researchers and user-led organisations (ULOs) might best be formed, practiced, managed, and assessed. We explored whether political economist Elinor Ostrom's Nobel prize winning analysis of common pool resource management-specifically eight principles to enhance collaborative group working as derived from her empirical research-could be usefully applied within a user-led project aiming to co-design new services to support more inclusive involvement of Disabled people in decision-making processes in policy and practice. METHODS: Participant observation and participatory methods over a 16-month period comprising observational notes of online user-led meetings (26 h), online study team meetings (20 h), online Joint Interpretive Forum meetings (8 h), and semi-structured one-to-one interviews with project participants (44 h) at two time points (months 6 and 10). RESULTS: Initially it proved difficult to establish working practices informed by Ostrom's principles for collaborative group working within the user-led project. Several attempts were made to put a structure in place that met the needs of both the research study and the aims of the user-led project, but this was not straightforward. An important shift saw a move away from directly applying the principles to the working practices of the group and instead applying them to specific tasks the group were undertaking. This was a helpful realisation which enabled the principles to become-for most but not all participants-a useful facilitation device in the latter stages of the project. Eventually we applied the principles in a way that was useful and enabled collaboration between researchers and a ULO (albeit in unexpected ways). CONCLUSIONS: Our joint reflections emphasise the importance of being reflexive and responsive when seeking to apply theories of collaboration (the principles) within user-led work. At an early stage, it is important to agree shared definitions and understanding of what 'user-led' means in practice. It is crucial to actively adapt and translate the principles in ways that make them more accessible and applicable within groups where prior knowledge of their origins is both unlikely and unnecessary.

Academic researchers and members of Shaping Our Lives­a national network and user-led organisation of Disabled people and service users­came together to explore whether Elinor Ostrom's Nobel Prize winning work on collaborative group working could usefully inform efforts to co-design new services to promote the inclusive involvement of Disabled people in decision-making processes. We wanted to see if Ostrom's 'principles for collaborative group working' were relevant to and could perhaps facilitate a co-design process led by a user led organisation. At first, we struggled to decide how Ostrom's principles might inform the user-led project. We tried different ways to achieve this and eventually found an approach that most but not all of us found helpful. An important change we made was to stop focusing on how the members of the user-led group were collaborating together and instead to apply the principles to specific aspects of the co-design project that were complex and could be responded to in multiple ways. By the end of the 16-month study we had found a way of using the principles to better enable collaboration between academic researchers and a user-led organisation (although not in the way we had initially anticipated). We learned how Ostrom's principles could be used to facilitate discussion of aspects of project work that are complex and the pros and cons of different plans of action. This project has demonstrated that collaboration between researchers and user-led organisations can be challenging but also has great potential for shared learning.

Personal assistants in England and the factors associated with absenteeism.

Personal assistants (PAs) have become an increasingly important element of long-term care (LTC) in England since the introduction of Direct Payments in 1996 and the Care Act 2014 legislation. The PAs, who are directly employed by social care users, can perform a number of support tasks including vital assistance in activities of daily living (ADL). Internationally these roles would be classed as domestic care work, including the employment of migrant care workers, e.g. in Germany and Austria. High turnover rates and work absenteeism in this market can cause disruption of these important daily activities, causing LTC users to potentially suffer neglect and poorer quality of life. Although there is research on turnover and absenteeism in nursing workforce in hospitals and LTC workers in nursing homes, little attention has been given to reasons for turnover of PAs and even less for absenteeism, which often precedes turnover, in a workforce of over 100,000 people in England. This research aims to fill this gap in knowledge by analyzing the reasons behind the absenteeism of PAs using quantitative methods. We used survey data of PAs in England, exploring the factors associated to one form of absenteeism-sick leave from work. After controlling for a number of factors ranging from job characteristics such as number of hours worked and type of contract, socio-economic characteristics from the PA and their employer, and supply and demand factors at local government region, the findings suggest a number of factors that significantly influenced sick leave, including distances traveled to work and number of PAs employed. Following the analysis, two people with life experience of LTC discuss the findings of the study and how they compare to their experiences of the market for PAs, providing a unique perspective from the people who could benefit the most from improving PA retention and reducing absenteeism.

Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review.

BACKGROUND: Patient/carer involvement in palliative care research has been reported as complex, difficult and less advanced compared to other areas of health and social care research. There is seemingly limited evidence on impact and effectiveness. AIM: To examine the evidence regarding patient/carer involvement in palliative care research and identify the facilitators, barriers, impacts and gaps in the evidence base. DESIGN: Qualitative evidence synthesis using an integrative review approach and thematic analysis. DATA SOURCES: Electronic databases were searched up to March 2018. Additional methods included searching websites and ongoing/unpublished studies, author searching and contacting experts. Eligibility criteria were based on the SPICE (Setting, Perspective, Intervention, Comparison, Evaluation) framework. Two quality assessments on methodology and involvement were undertaken. RESULTS: A total of 93 records were included. Eight main themes were identified, mainly concerning facilitators and barriers to effective patient and carer involvement in palliative care research: definitions/roles, values/principles, organisations/culture, training/support, networking/groups, perspectives/diversity, relationships/communication and emotions/impact. Evidence on the impact of involvement was limited, but when carried out effectively, involvement brought positive benefits for all concerned, improving the relevance and quality of research. Evidence gaps were found in non-cancer populations and collaborative/user-led involvement. CONCLUSION: Evidence identified suggests that involvement in palliative care research is challenging, but not dissimilar to that elsewhere. The facilitators and barriers identified relate mainly to the conduct of researchers at an individual level; in particular, there exists a reluctance among professionals to undertake involvement, and myths still perpetuate that patients/carers do not want to be involved. A developed infrastructure, more involvement-friendly organisational cultures and a strengthening of the evidence base would also be beneficial.

How Does Therapy Harm? A Model of Adverse Process Using Task Analysis in the Meta-Synthesis of Service Users' Experience.

Background: Despite repeated discussion of treatment safety, there remains little quantitative research directly addressing the potential of therapy to harm. In contrast, there are numerous sources of qualitative evidence on clients' negative experience of psychotherapy, which they report as harmful. Objective: To derive a model of process factors potentially leading to negative or harmful effects of therapy, from the clients' perspective, based on a systematic narrative synthesis of evidence on negative experiences and effects of psychotherapy from (a) qualitative research findings and (b) participants' testimony. Method: We adapted Greenberg (2007) task analysis as a discovery-oriented method for the systematic synthesis of qualitative research and service user testimony. A rational model of adverse processes in psychotherapy was empirically refined in two separate analyses, which were then compared and incorporated into a rational-empirical model. This was then validated against an independent qualitative study of negative effects. Results: Over 90% of the themes in the rational-empirical model were supported in the validation study. Contextual issues, such as lack of cultural validity and therapy options together with unmet client expectations fed into negative therapeutic processes (e.g., unresolved alliance ruptures). These involved a range of unhelpful therapist behaviors (e.g., rigidity, over-control, lack of knowledge) associated with clients feeling disempowered, silenced, or devalued. These were coupled with issues of power and blame. Conclusions: Task analysis can be adapted to extract meaning from large quantities of qualitative data, in different formats. The service user perspective reveals there are potentially harmful factors at each stage of the therapy journey which require remedial action. Implications of these findings for practice improvement are discussed.

Risk factors for negative experiences during psychotherapy.

BACKGROUND: It is estimated that between 3% and 15% of patients have a negative experience of psychotherapy, but little is understood about this. AIMS: The aim of this study was to investigate the factors associated with patients' negative therapy experiences. METHOD: The data comprised 185 patient and 304 therapist questionnaires, 20 patient and 20 therapist interviews. Patients reported on an unhelpful or harmful experience of therapy, and therapists on a therapy where they thought the patient they were working with had a poor or harmful experience. These were transcribed and analysed using thematic analysis. RESULTS: There was a Lack of fit between Patient needs, Therapist skills, and Service structures. This could result in Fault Lines, a tension between Safety and containment and Power and control. This tension led to Strain and Poor Engagement, which led to Consequences following the negative therapy experience. CONCLUSIONS: Patients require clear information, choice, involvement in decision-making, explicit contracting and clarity about sessions and progress. Opportunities for patient feedback should be the norm, where the therapist and service are vigilant for signs of deterioration and solutions considered. Clinical and methodological significance of this article: Estimates of "unwanted effects," including long-lasting effects, of psychotherapy have ranged from 3% to 15%. Few empirical studies have been conducted in this area. This study aimed to address this gap and provide clinicians with a model of risk factors for negative therapy effects. The findings of this study indicate the importance of providing patients with a supportive service structure that offers clear information, choice and involvement in decision-making. Explicit contracting at the beginning of therapy and clarity about sessions and progress are also important in managing patient expectations throughout. Opportunities for patient feedback should be provided.

The self-management of longer-term depression: learning from the patient, a qualitative study.

BACKGROUND: Depression is a common mental health condition now viewed as chronic or long-term. More than 50 % of people will have at least one further episode of depression after their first, and therefore it requires long-term management. However, little is known about the effectiveness of self-management in depression, in particular from the patients' perspective. This study aimed to understand how people with longer-term depression manage the condition, how services can best support self-management and whether the principles and concepts of the recovery approach would be advantageous. METHODS: Semi-structured in depth interviews were carried out with 21 participants, recruited from a range of sources using maximum variation sampling. Interpretative Phenomenological Analysis was used by a diverse team comprised of service users, practitioners and academics. RESULTS: Four super-ordinate themes were found: experience of depression, the self, the wider environment, self-management strategies. Within these, several prominent sub-themes emerged of importance to the participants. These included how aspects of themselves such as hope, confidence and motivation could be powerful agents; and how engaging in a wide range of chosen activities could contribute to their emotional, mental, physical, social, spiritual and creative wellbeing. CONCLUSIONS: Services in general were not perceived to be useful in specifically facilitating self-management. Increased choice and control were needed and a greater emphasis on an individualised holistic model. Improved information was needed about how to develop strategies and locate resources, especially during the first episode of depression. These concepts echoed those of the recovery approach, which could therefore be seen as valuable in aiding the self-management of depression.

Innovation in health economic modelling of service improvements for longer-term depression: demonstration in a local health community.

BACKGROUND: The purpose of the analysis was to develop a health economic model to estimate the costs and health benefits of alternative National Health Service (NHS) service configurations for people with longer-term depression. METHOD: Modelling methods were used to develop a conceptual and health economic model of the current configuration of services in Sheffield, England for people with longer-term depression. Data and assumptions were synthesised to estimate cost per Quality Adjusted Life Years (QALYs). RESULTS: Three service changes were developed and resulted in increased QALYs at increased cost. Versus current care, the incremental cost-effectiveness ratio (ICER) for a self-referral service was £11,378 per QALY. The ICER was £2,227 per QALY for the dropout reduction service and £223 per QALY for an increase in non-therapy services. These results were robust when compared to current cost-effectiveness thresholds and accounting for uncertainty. CONCLUSIONS: Cost-effective service improvements for longer-term depression have been identified. Also identified were limitations of the current evidence for the long term impact of services.

Occupational therapy for people with psychotic conditions in community settings: a pilot randomized controlled trial.

OBJECTIVES: To investigate the effectiveness of a long established intervention, occupational therapy for people with psychotic conditions, and to inform future research designs. DESIGN: A pilot randomized controlled trial. SETTING: Two community mental health teams in a UK city. PARTICIPANTS: Forty-four adults with schizophrenia or other psychotic conditions, and functional problems. INTERVENTIONS: Twelve months of individualized occupational therapy in community settings, as an adjunct to usual care and compared to treatment as usual. A two to one randomization ratio was used in favour of occupational therapy. OUTCOME MEASURES: Social Functioning Scale, Scale for the Assessment of Negative Symptoms and employment. RESULTS: Both groups' scores on Social Functioning Scale and Scale for the Assessment of Negative Symptoms showed significant improvement over 12 months. The Social Functioning Scale overall mean difference for occupational therapy was 2.33, P=0.020 and for treatment as usual was 6.17, P=0.023. The Scale for the Assessment of Negative Symptoms total mean difference for occupational therapy was -16.25, P<0.001 and for treatment as usual was -17.36, P= 0.011. There were no differences between the two groups on any of the outcome measures. After 12 months the occupational therapy group showed clinically significant improvements that were not apparent in the control group. These were in four subscales of the Social Functioning Scale: relationships, independence performance, independence competence and recreation. Out of 30 people receiving occupational therapy those with a clinical level of negative symptoms reduced from 18 (64%) to 13 (46%), P=0.055. CONCLUSION: This pilot study suggested that individualized occupational therapy may contribute to recovery but more focus is recommended on people's cognitive abilities and employment.