Psychosocial interventions affecting global perceptions of control in people with Parkinson's disease: a scoping review.

PURPOSE: Perceived control is an important construct for the psychological well-being of people affected by chronic conditions, and higher perceived control is associated with better outcomes. Psychosocial interventions have been trialled in these populations to improve both global and specific perceptions of control. However, most interventions involving people with Parkinson's have focused on single-domain forms of control, while those addressing global perceived control are yet to be reviewed. This study aimed to identify and map the types of psychosocial interventions in individuals with Parkinson's which have included forms of global perceived control as an outcome. MATERIALS AND METHODS: Scoping review based on a search across MEDLINE, PsycINFO, CINAHL, Academic Search Ultimate. RESULTS: From an initial return of 4388 citations, 12 citations were eventually included. These consisted of 8 quantitative and 4 qualitative studies, and covered 4 overarching categories of psychosocial interventions. Mixed results were found for cognitive, educational, and physical interventions, while a randomised controlled trial on mindfulness-based lifestyle programme showed more preliminary positive evidence. CONCLUSIONS: Further rigorous research is required on the topic to build on these preliminary findings. In the meantime, clinicians may need to consider programmes which proved effective with populations similar to people with Parkinson's.IMPLICATIONS FOR REHABILITATIONPerceived control is a psychological construct important for people with chronic illnesses, which can be targeted by psychosocial interventions.This article reviewed psychosocial interventions targeting global forms of perceived control in Parkinson's.Mixed results were reported for the cognitive, educational, and physical interventions identified, while a randomised controlled trial on a mindfulness-based lifestyle programme showed more promising evidence.In the meantime, clinicians may need to consider programmes found to be effective with people with similar conditions to Parkinson's.

Perceived control as a predictor of medication adherence in people with Parkinson's: a large-scale cross-sectional study.

PURPOSE: Medication adherence is a multi-faceted construct associated with several positive consequences in people with chronic conditions. However, non-adherence currently represents a major issue in Parkinson's, potentially due to low perceptions of control. This study investigated the predictive ability of several aspects of perceived control on adherence in people with Parkinson's, while accounting for previously established predictors such as depression and medication variables. MATERIALS AND METHODS: An online cross-sectional survey was carried out with 1210 adults with Parkinson's from 15 English-speaking countries. Demographic and clinical questions, as well as measures of depression, aspects of perceived control, and medication adherence were included. Pearson's correlations and a 4-block hierarchical regression analysis were performed to assess the relationship between the variables. RESULTS: Perceived control explained a slightly higher amount of variance in medication adherence compared to medication variables when entered in the last block. Unexpectedly, depression was not significantly related with adherence. Internal locus of control was an independent negative predictor of adherence, while external dimensions of locus of control emerged as independent positive predictors. CONCLUSIONS: In people with Parkinson's, perceptions of control may have a larger impact on adherence compared to medication variables. Implications for clinical practice and future research are discussed.Implications for RehabilitationPerceived control and depression are considered important constructs for medication adherence in Parkinson's, which in turn is often problematic for affected individuals.The specific predictive value of different aspects of perceived control on medication adherence in Parkinson's is currently unclear.This large-scale study found that perceptions of control may have a larger impact on adherence compared to medication variables, while depression was unrelated to it.A need for psychologically-informed interventions, person-centred approaches to medication management, and Parkinson-specific measures of adherence are highlighted.

"I will try anything" the experience of working age stroke survivors living with chronic post-stroke pain: an interpretative phenomenological analysis.

PURPOSE: To investigate the experience of working age adults living with chronic post-stroke pain in the United Kingdom (UK). METHODS: Semi-structured interviews were conducted with eight working age (46-64 years) UK-based stroke survivors who experience chronic post-stroke pain (≥3 months). The interviews were analysed using interpretative phenomenological analysis. RESULTS: The analysis led to three Group Experiential Themes: "The Solitude of the Pain Experience," "Unsatisfactory Healthcare and the Need for Self-Care" and "The Development of Pain Acceptance." Findings suggest that individuals see their post-stroke pain as an invisible disability, which is overlooked and misunderstood by others. Furthermore, in the absence of a differential post-stroke pain diagnosis, clear, accurate information and alternatives to pharmacological treatments, individuals with post-stroke pain invest their own resources in finding answers and a way to live with the pain. CONCLUSIONS: The findings suggest the need for further education on post-stroke pain for healthcare professionals, the consideration of pain in post-stroke assessments, the need for clear differential pain diagnoses and the provision of accurate information to patients. Research is needed to establish non-pharmacological evidence-based treatment approaches, such as pain management programmes, peer support and psychological interventions.

Post-stroke pain is an invisible disability, difficult to describe to others and therefore often overlooked and misunderstood by others.Differential pain diagnoses should be given to patients with clear explanations of the underlying mechanism, characteristics and prognosis.Treatments other than pharmacology, such as a pain management programmes, peer support, family therapy and psychological interventions, should be considered and patients should be supported in finding a way to live a meaningful life despite the pain.Healthcare professionals, particularly in primary healthcare services would benefit from training on post-stroke pain.

Selection and visualisation of outcome measures for complex post-acute acquired brain injury rehabilitation interventions.

BACKGROUND: Outcome measurement challenges rehabilitation services to select tools that promote stakeholder engagement in measuring complex interventions. OBJECTIVES: To examine the suitability of outcome measures for complex post-acute acquired brain injury (ABI) rehabilitation interventions, report outcomes of a holistic, neuropsychological ABI rehabilitation program and propose a simple way of visualizing complex outcomes. METHODS: Patient/carer reported outcome measures (PROMS), experience measures (PREMS) and staff-rated measures were collected for consecutive admissions over 1 year to an 18-week holistic, neuropsychological rehabilitation programme at baseline, 18 weeks and 3- and 6-month follow-up. RESULTS: Engagement with outcome measurement was poorest for carers and at follow-up for all stakeholders. Dependence, abilities, adjustment, unmet needs, symptomatology including executive dysfunction, and self-reassurance showed improvements at 18 weeks. Adjustment, social participation, perceived health, symptomatology including dysexecutive difficulties, and anxiety were worse at baseline for those who did not complete rehabilitation, than those who did. A radar plot facilitated outcome visualization. CONCLUSIONS: Engagement with outcome measurement was best when time and support were provided. Supplementing patient- with staff-rated and attendance measures may explain missing data and help quantify healthcare needs. The MPAI4, EBIQ and DEX-R appeared suitable measures to evaluate outcomes and distinguish those completing and not completing neuropsychological rehabilitation.