This paper reports a literature review on the topic of ethical issues in in-

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 Additional methods included searching websites and ongoing/unpublished studies, author searching and contacting experts.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.

BackgroundDepression 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.MethodsSemi-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.ResultsFour 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.ConclusionsServices 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.Electronic supplementary materialThe online version of this article (doi:10.1186/s12888-015-0550-6) contains supplementary material, which is available to authorized users.

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.

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, eligible for enhanced care and having functional problems.Interventions: Twelve months of individualised occupational therapy (OT) in community settings, as an adjunct to usual care and compared to treatment as usual (TAU). A two to one randomisation ratio was used to enable more people to receive OT. Results: Both groups' scores on SFS and SANS showed significant improvement over 12 months. For SFS, the OT group scores were: mean difference = 2.33, CI: 0.39 to 4.27, t = 1.525, P= 0.020 and the TAU group were: mean difference = 6.17, CI: 1.04 to 11.29, t = 2.65, P = 0.023. For SANS, OT group scores were: mean difference = -16.25, CI: -22.94 to -9.56, t = -4.99, P <0.001 and the TAU group: mean difference = -17.36, CI: -29.78 to -4.94, t = -3.12, P = 0.011. There were no differences between the two groups on any of the outcome measures. After 12 months the OT group showed clinically significant improvements that were not apparent in the control group. The OT group showed clinical improvement in 4 subscales of the SFS: relationships, independence performance, independence competence, and recreation. Out of 30 people receiving OT those with a clinical level of negative symptoms reduced from 18 (64%) to 13 (46%) P = 0.055.