Project description:BACKGROUND:People with dementia are often marginalized and excluded from influence, also in relation to dementia research. There is, however, a growing requirement for inclusion through Patient and Public Involvement (PPI), but there is still limited knowledge on how researchers can fully benefit from the involvement of people with dementia in the development and testing of psychosocial interventions. This paper describes the results of a pan-European consultation with people with dementia, synthesizing their views on outcomes of psychosocial interventions. OBJECTIVE:To involve people with dementia in establishing what are meaningful outcomes when participating in psychosocial interventions. SETTING AND PARTICIPANTS:Consultations took place at four divergent sites across Europe, involving twenty-five people with dementia from nine European countries. METHODS:The methods used for the consultation were developed through an iterative process involving people with dementia. Data from the consultation were analysed from a thematic analysis approach. RESULTS:The results suggested that people with dementia wish to participate in interventions that enhance their well-being, confidence, health, social participation and human rights. This highlights a need for improvements in psychosocial research to capture these outcomes. DISCUSSION AND CONCLUSIONS:Involving people with dementia in discussions of psychosocial interventions has enhanced our understanding about meaningful outcome measures in research and methods of data collection. This study suggests that new outcome measures in psychosocial research are needed where concepts of positive psychology and social health can guide innovation and outcome measurement.
Project description:BACKGROUND:Facing an epidemic of opioid-related mortality, many government health departments, insurers, and treatment providers have attempted to expand patient access to buprenorphine in psychosocial substance use disorder (SUD) programs and medical settings. METHODS:With Missouri Medicaid data from 2008 to 2015, we used Cox proportional hazard models to estimate the relative hazards for treatment attrition and SUD-related emergency department (ED) visits or hospitalizations associated with buprenorphine in psychosocial SUD programs and medical settings. We also tested the association of buprenorphine with hours of psychosocial treatment during the first 30?days of psychosocial SUD treatment. The analytic sample included claims from 7606 individuals with an OUD diagnosis. RESULTS:Compared to psychosocial treatment without buprenorphine (PSY), the addition of buprenorphine (PSY-B) was associated with a significantly reduced hazard for treatment attrition (adjusted hazard ratio: 0.67, 95% CI: 0.62-0.71). Among buprenorphine episodes, office-based (B-OBOT), outpatient hospital (B-OPH), and no documented setting (B-PHA) were associated with reduced hazards for treatment attrition when compared to the psychosocial SUD setting (B-PSY) (adjusted hazard ratios: 0.27, 95% CI: 0.24-0.31; 0.46, 95% CI: 0.39-0.54; 0.70, 95% CI: 0.61-0.81). Compared to B-PSY, B-OBOT and B-PHA were associated with significantly reduced hazards for a SUD-related ED visits or hospitalization (adjusted hazard ratios: 0.59, 95% CI: 0.41-0.85; 0.53, 95% CI: 0.36-0.78). There was no significant difference between B-PSY and B-OPH or B-PSY and PSY in hazard for an SUD-related ED visit or hospitalization. CONCLUSIONS:Our findings support the conclusion that adding buprenorphine to Medicaid-covered psychosocial SUD treatment reduces patient attrition and SUD-related ED visits or hospitalizations but that buprenorphine treatment in office-based medical settings is even more effective in reducing these negative outcomes. Policy-makers should consider ways to expand buprenorphine access in all settings, but particularly in office-based medical settings. Buprenorphine treatment in an unbilled setting was associated with an increased hazard for patient attrition when compared to treatment in billed medical settings, indicating the importance of Medicaid-covered provider visits for patient retention.
Project description:BackgroundUnderstanding intervention delivery as intended, particularly in complex interventions, should be underpinned by good quality fidelity assessment. We present the findings from a fidelity assessment embedded as part of a trial of a complex community-based psychosocial intervention, Journeying through Dementia (JtD). The intervention was designed to equip individuals with the knowledge and skills to successfully self-manage, maintain independence, and live well with dementia and involves both group and individual sessions. The methodological challenges of developing a conceptual framework for fidelity assessment and creating and applying purposely designed measures derived from this framework are discussed to inform future studies.MethodsA conceptual fidelity framework was created out of core components of the intervention (including the intervention manual and training for delivery), associated trial protocols and pre-defined fidelity standards and criteria against which intervention delivery and receipt could be measured. Fidelity data collection tools were designed and piloted for reliability and usability. Data collection in four selected sites (fidelity sites) was via non-participatory observations of the group aspect of the intervention, attendance registers and interventionist (facilitator and supervisor) self-report.ResultsInterventionists from all four fidelity sites attended intervention training. The majority of group participants at the four sites (71%) received the therapeutic dose of 10 out of 16 sessions. Weekly group meeting attendance (including at 'out of venue' sessions) was excellent at 80%. Additionally, all but one individual session was attended by the participants who completed the intervention. It proved feasible to create tools derived from the fidelity framework to assess in-venue group aspects of this complex intervention. Results of fidelity assessment of the observed groups were good with substantial inter-rater reliability between researchers KAPPA 0.68 95% CI (0.58-0.78). Self-report by interventionists concurred with researcher assessments.ConclusionsThere was good fidelity to training and delivery of the group aspect of the intervention at four sites. However, the methodological challenges of assessing all aspects of this complex intervention could not be overcome due to practicalities, assessment methods and ethical considerations. Questions remain regarding how we can assess fidelity in community-based complex interventions without impacting upon intervention or trial delivery.Trial registrationISRCTN17993825 .
Project description:BACKGROUND:Community health worker (CHW) interventions are a successful strategy to promote health among HIV-negative and persons living with HIV (PLWH). Psychosocial factors are critical dimensions of HIV/AIDS care contributing to prognosis of the disease, yet it is unclear how CHW interventions improve psychosocial outcomes in PLWH. The purpose of this study was to critically appraise the types, scope, and nature of CHW interventions designed to address psychosocial outcomes in PLWH. METHODS:We performed database searches-PubMed, EMBASE, CINAHL, and Cochrane-to identify randomized controlled trials published in English before April 2017. Fourteen articles met the eligibility criteria. RESULTS:Half of the studies were conducted in the United States. Social cognitive theory was used more than once in nine theory-guided studies. CHW interventions were largely focused on reducing depression (n = 6) or stigma related to HIV (n = 4), or promoting quality of life (n = 4), social support (n = 4), and self-efficacy (n = 4). Didactic methods and role-playing were used to train CHWs. CHWs played multiple roles in delivering intervention, including a counselor and a supporter (n = 10), educator (n = 5), or a navigator (n = 3). CHW intervention fidelity was assessed in 4 studies. Five studies found positive changes in six psychosocial outcomes including quality of life (2 of 4) and self-efficacy (2 of 4). CHW interventions had no effect on social support in 2 of 4 studies, and stigma in 3 of 4 studies. None of the CHW interventions were successful in reducing depressive symptoms among PLWH. CONCLUSIONS:Evidence partially supported the use of CHWs in promoting psychosocial outcomes in PLWH. Future CHW intervention should be expanded in scope to address key psychosocial determinants of HIV/AIDS outcomes such as health literacy. Further, fidelity measures should be incorporated into intervention delivery.
Project description:IMPORTANCE:Neuropsychiatric behaviors of persons with dementia, including agitation, aggression, and rejection of care, are almost universal; occur throughout the disease process; and have negative consequences for both persons with dementia and their caregivers. Nonpharmacological approaches are now recognized as first-line treatment to address these behaviors. One promising approach is activity tailored to the person's interests, abilities, and physical and social environment. An evidence-based program, New Ways for Better Days: Tailoring Activities for Persons With Dementia and Their Caregivers (TAP), draws on occupational therapy principles (person-environment-occupation fit, activity analysis) to meaningfully engage persons with dementia. OBJECTIVE:This case report describes the TAP protocol and clinical reasoning processes underlying use of tailored activities as a therapeutic modality to address dementia-related neuropsychiatric behaviors. DESIGN:This is a case study of an African-American woman in her 60s caring for her father, age 92, who has severe dementia and multiple behaviors. OUTCOMES AND MEASURES:Primary outcomes in this case report include the person with dementia's engagement in an activity and the reported neuropsychiatric behaviors. In addition, the caregiver's confidence in using activities is reported. These and other measures from the TAP protocol are described in full. RESULTS:After working with an occupational therapist for eight sessions, the person with dementia's engagement in activity increased by 50% and his frequency of vocal disturbance decreased, and the caregiver felt more confident in using activities with her father. CONCLUSION AND RELEVANCE:This case report illustrates how occupational therapists working with families of persons with dementia can use the TAP protocol to help them manage neuropsychiatric behaviors by tailoring activities. WHAT THIS ARTICLE ADDS:Occupational therapists are uniquely qualified to systematically assess the cognitive functioning of persons with dementia, caregivers, and home environments and to integrate this information to derive and implement activities tailored to the person's capacities and context, thereby reducing neuropsychiatric behaviors and increasing engagement in meaningful activity.
Project description:PurposeLittle is known about the illness experience from the perspective of individuals with dementia (IWDs), as most quantitative research has focused on IWDs' psychosocial issues from proxy reports. The primary aim of this study was to better understand the impact of the illness experience on well-being from the perspective of the IWD through the framework of the Stress Process Model for Individuals with Dementia (SPM for IWDs).Design and methodsGuided by the SPM for IWDs, self-report data were collected from IWDs (N = 131) about their illness experience, including primary objective and subjective stressors, secondary role and intrapsychic strains, and well-being outcomes. Using multiple linear regression, primary stressors, secondary strains, and background and context characteristics were entered into 3 prediction models for each outcome: anxiety, depression, and quality of life (QoL).ResultsThree distinct prediction patterns emerged for each of the outcome measures. Embarrassment about memory loss was the unique predictor of anxiety, whereas physical health strain and role captivity uniquely predicted depression. Unique predictors for QoL included lower perceived instrumental activities of daily living (IADL) difficulty and higher self-efficacy.ImplicationsThis study provided valuable insight into the illness experience from the perspective of the IWD and identified key areas amenable to interventions, such as managing embarrassment about memory problems as well as improving self-efficacy and inner strength. Moreover, this study provided additional support for the inclusion of IWDs in the research process and highlighted the need for further research regarding clinical application of findings, testing of hypotheses, and analyzing efficacy of interventions.