Sustainable Behavior Change for Health Supported by Person-Tailored, Adaptive, Risk-Aware Digital Coaching in a Social Context: Study Protocol for the STAR-C Research Programme.

Introduction: The Västerbotten Intervention Programme (VIP) in the Region Västerbotten Sweden is one of the very few cardiovascular disease (CVD) prevention programmes globally that is integrated into routine primary health care. The VIP has been shown as a cost-effective intervention to significantly reduce CVD mortality. However, little is known about the effectiveness of a digital solution to tailor risk communication strategies for supporting behavioral change. STAR-C aims to develop and evaluate a technical platform for personalized digital coaching that will support behavioral change aimed at preventing CVD. Methods: STAR-C employs a mixed-methods design in seven multidisciplinary projects, which runs in two phases during 2019-2024: (i) a formative intervention design and development phase, and (ii) an intervention implementation and evaluation phase. In the 1st phase, STAR-C will model the trajectories of health behaviors and their impact on CVDs (Project 1), evaluate the role of the social environment and social networks on behavioral change (Project 2) and assess whether and how social media facilitates the spread of health information beyond targeted individuals and stimulates public engagement in health promotion (Project 3). The findings will be utilized in carrying out the iterative, user-centered design, and development of a person-tailored digital coaching platform (Project 4). In the 2nd phase, STAR-C will evaluate the implementation of the coaching programme and its effectiveness for promoting behavioral change and the spreading of health information across social networks and via social media (Project 5). The cost-effectiveness (Project 6) and ethical issues (Project 7) related to the coaching programme intervention will be evaluated. Discussion: The STAR-C research programme will address the knowledge and practice research gaps in the use of information technologies in health promotion and non-communicable disease (NCD) prevention programmes in order to narrow the health inequality gaps. Ethics: STAR-C has received approval from the Swedish Ethical Review Authority (Dnr. 2019-02924;2020-02985). Dissemination: The collaboration between Umeå University and Region Västerbotten will ensure the feasibility of STAR-C in the service delivery context. Results will be communicated with decision-makers at different levels of society, stakeholders from other regions and healthcare professional organizations, and through NGOs, local and social media platforms.

Parent training support for intellectually disabled parents.

BACKGROUND: Intellectual disability may impact on an individual's capacity to parent a child effectively. Research suggests that the number of intellectually disabled people with children is increasing. Children of parents with intellectual disabilities may be at increased risk of neglectful care which could lead to health, developmental and behavioural problems, or increased risk of intellectual disability.However, there is some indication that some parents with intellectual disabilities are able to provide adequate child care if they are given appropriate training and support to do so. OBJECTIVES: To assess the effectiveness of parent training interventions to support the parenting of parents with intellectual disabilities SEARCH STRATEGY: We searched the following databases: Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library), MEDLINE, EMBASE, CINAHL, PsycINFO, ASSIA, Sociological Abstracts, Dissertation Abstracts International, MetaRegister of Controlled Trials, and ZETOC. SELECTION CRITERIA: Randomised controlled trials comparing parent training interventions for parents with intellectual disabilities with usual care or with a control group. Outcomes of interest were: the attainment of parenting skills specific to the intervention, safe home practices and the understanding of child health. DATA COLLECTION AND ANALYSIS: Two review authors independently assessed risk of bias and undertook data extraction. MAIN RESULTS: Three trials met the inclusion criteria for this review but no meta-analysis was possible. One study reported improved maternal-child interaction following group parent training compared with the control group. The second study reported some improvements in parents knowledge of life threatening emergencies, ability to recognise dangers and identify precautions and smaller improvements in their ability to implement precautions, use medicines safely and recognise child illness and symptoms. The third study reported improvement in child care and safety skills following the intervention. AUTHORS' CONCLUSIONS: There is some risk of bias in the included studies, with limited information available to assess possible bias and to fully assess the findings of one included study. Whilst the evidence presented here does seem promising with regard to the ability of such interventions to improve parenting knowledge and skill in this population, there is a need for larger RCTs of interventions before conclusions can be drawn about the effectiveness of parent training for this group of parents.

A psychometric evaluation of a Swedish version of the psychopathology inventory for mentally retarded adults (PIMRA).

Given the difficulties with symptom identification and the assessment of mental health problems in persons with intellectual disabilities (ID) there has been a focus on the development of relevant assessment schedules for persons with ID. A Swedish version of the psychopathology inventory for mentally retarded adults (PIMRA, informant version), an instrument designed for identification of specific mental health problems in persons with ID, was evaluated in terms of inter-rater reliability, internal consistency, item grouping, criterion and concurrent validity based on a sample of 101 adults with different levels of ID. The Swedish version of the PIMRA had low inter-rater agreement on specific items but good agreement on low or high total score. In order to investigate internal validity, principal component analyses (PCA) were conducted in steps. Consequently, the majority of the 26 items, which remained after three PCA analyses, were grouped in a pattern approximating five of the original PIMRA subscales. The present analysis identified no item grouping matching the original Affective disorder subscale. Based on these results a revised Swedish version was developed. The concurrent validity analysis yielded a strong association between the total scores of the PIMRA and Reiss Screen for Maladaptive Behaviour (RSMB), between subscales on both instruments describing psychotic symptoms and between the RSMB subscale Aggressive behaviour and the PIMRA subscale Adjustment problems. The outcome of the criterion validity analysis indicated that individuals with a clinical diagnosis obtained higher total PIMRA scores than individuals without a clinical diagnosis and a comparison between the PIMRA subscale Psychosis and the clinical diagnosis indicating psychoses according to DSM-III-R or DSM-IV yielded a higher specificity than sensitivity measure. The results indicate that the PIMRA had a potential to identify individuals with mental health problems in persons with different levels (mild, moderate and severe) of ID and identify individuals with a specific mental disorder. Thus, professionals might use the PIMRA as a complement in the diagnostic process.

Occurrence of mental health problems in Swedish samples of adults with intellectual disabilities.

OBJECTIVE: The aim of this study was to investigate the occurrence of mental health problems in adults with intellectual disabilities (ID) and the number of adults with ID receiving care at general mental health clinics. METHOD: The Reiss Screen for Maladaptive Behaviour and the Psychopathology Inventory for Mentally Retarded Adults were used to investigate mental health problems in samples from two Swedish counties. Adults with ID receiving psychiatric care at general mental health clinics were investigated via the mental health services register in one county. RESULTS: The overall occurrence of mental health problems in adults with ID ranged from 34% to 64%. The most common mental health problems were aggressive, self-injurious behaviours, signs of depression, anxiety or adjustment problems. The occurrence of adults with ID among patients receiving out- or in-patient psychiatric care was approximately 1%. Between 70% and 90% of these persons had a mild level of ID. CONCLUSION: The overall occurrence of mental health problems was similar to reported overall figures in comparable studies conducted in the US, UK and Denmark. The number of adults with ID registered for out- or in-patient psychiatric care was low compared with the occurrence of mental health problems based on the screening results.