Maximising engagement and participation of intellectual disability staff in research: Insights from conducting a UK-wide survey.

AIM: This article explores ways of maximising engagement of intellectual disability staff as research participants, research advisers and research implementers. METHOD: The authors describe and reflect on a three-phased strategy in recruiting front-line staff (n = 690) working for intellectual disability service providers (n = 25) to participate in a UK-wide anonymous online survey about death, dying and bereavement. RESULTS: Important elements in engaging participants were: involving stakeholders at all stages of the research process, which includes: building relationships with participating organisations; enlisting organisational management support at all levels; an attractive and well laid-out collection tool; a well-structured recruitment strategy; time and flexibility; and a varied and targeted dissemination strategy. However, the recruitment method had limitations, in particular around representativeness, bias and generalisability. CONCLUSIONS: Staff in intellectual disability services can be enthusiastic and invaluable research participants. Active engagement between researchers, participating organisations and stakeholder groups is key to ensuring involvement of intellectual disability staff with research.

Communicating about death and dying with adults with intellectual disabilities who are terminally ill or bereaved: A UK-wide survey of intellectual disability support staff.

BACKGROUND: Illness and death are part of life for everyone, including people with intellectual disabilities. This study investigated the extent to which staff communicate about death with people with intellectual disability facing terminal illness or bereavement. METHOD: Staff who support people with intellectual disability in the UK (n = 690) completed an electronic survey. Detailed data were obtained from staff where a client had died in the past 12 months (n = 111), was terminally ill (n = 41) or had been bereaved (n = 200). Analysis included descriptive and chi-squared statistics. RESULTS: 52.6% of people with intellectual disability who were terminally ill were told about their illness, and 18.1% were told they would die. Of those experiencing an anticipated bereavement, 32.4% of staff said no one talked about this with them beforehand. A quarter of staff had received training on end of life or bereavement. CONCLUSION: Death affects many people with intellectual disability. Staff require training and support in communicating death.

Dementia literacy in Western Pacific countries: A mixed methods study.

OBJECTIVES: To examine levels of knowledge about dementia and attitudes towards dementia in low- and middle-income countries (LMICs), identify sources to turn to for help, and explore the relationship between knowledge and attitudes. METHODS: This mixed methods study with both quantitative (a cross-sectional survey) and qualitative (focus group interviews) components was conducted in Cambodia, the Philippines, and Fiji in 2017-18. A survey was completed by the citizens of the three countries, and two focus group interviews were conducted in each country to generate a context-specific understanding of dementia literacy within the local LMIC setting. The quantitative component utilized the Alzheimer's Disease Knowledge Scale and the Dementia Attitude Scale, while knowledge, attitudes, and views on seeking help for dementia was discussed in the focus group interviews (qualitative component). RESULTS: A total of 476 participants completed the survey. Another 54 participants (39 females and 15 males) were invited to join six focus group interviews to express their views on dementia. Positive attitudes were noted despite the level of dementia knowledge was low. Families and religious figures were viewed as the sources for help. Controlling for demographics, country-specific predictors of positive attitudes towards dementia were found. CONCLUSIONS: The involvement of family members and religious leaders in dementia education could enhance the recognition of dementia. Specific kinds of dementia knowledge should be targeted to educate the public in different countries.

Predictors of levels of functioning among Chinese people with severe mental illness: a 12-month prospective cohort study.

AIM AND OBJECTIVES: The aim of the study was to identify the predictors of functioning in Chinese people with serious mental illness. BACKGROUND: Mental healthcare services for people suffering from serious mental illness are delivered to not only minimise their psychiatric symptoms but also enhance their levels of functioning in the community. Yet, there is insufficient research directed towards the associated or predictive factors that may influence different aspects of functioning, particularly in terms of patients' psychosocial variables. DESIGN: A longitudinal, prospective cohort study design was adopted. METHODS: A clustered random sample of 395 of 611 outpatients with serious mental illness completed the same set of questionnaires at baseline and at 12 months. Changes in patients' functioning as measured by self-maintenance, social functioning and community living skills were recorded over 12 months. Potential relationships between their level of functioning and symptom severity, self-esteem, self-efficacy, perceived negative familial response, negative self-stigma towards mental illness, re-hospitalisation rate and socio-demographic characteristics were investigated. RESULTS: Most participants reported moderate to moderately high levels of overall functioning, self-efficacy, self-stigma and perceived negative familial response at baseline and there were significant observed correlations between these variables. Results of multiple regression models indicated that while symptom severity predicted functioning in patients with psychotic and affective disorders, a negatively perceived familial response only predicted negative changes in social functioning of the patients with psychotic disorders (ß = -0·25). In addition, improvements in self-efficacy (ß = 0·23) and reduction in self-stigma (ß = -0·15) positively predicted changes in the community living skills of patients with affective disorders. CONCLUSION: The findings indicate the significance of psychiatric patients' symptom management and factors such as self-efficacy and self-stigma to predict their functioning over a 12-month follow-up. RELEVANCE TO CLINICAL PRACTICE: Mental healthcare services should consider giving priority to self-stigma reduction and empowerment to manage illness especially in this population of patients and their families, thus effectively enhancing their self-care ability to cope with their illness and/or difficult life situations.

Therapist Feedback and Implications on Adoption of an Artificial Intelligence-Based Co-Facilitator for Online Cancer Support Groups: Mixed Methods Single-Arm Usability Study.

BACKGROUND: The recent onset of the COVID-19 pandemic and the social distancing requirement have created an increased demand for virtual support programs. Advances in artificial intelligence (AI) may offer novel solutions to management challenges such as the lack of emotional connections within virtual group interventions. Using typed text from online support groups, AI can help identify the potential risk of mental health concerns, alert group facilitator(s), and automatically recommend tailored resources while monitoring patient outcomes. OBJECTIVE: The aim of this mixed methods, single-arm study was to evaluate the feasibility, acceptability, validity, and reliability of an AI-based co-facilitator (AICF) among CancerChatCanada therapists and participants to monitor online support group participants' distress through a real-time analysis of texts posted during the support group sessions. Specifically, AICF (1) generated participant profiles with discussion topic summaries and emotion trajectories for each session, (2) identified participant(s) at risk for increased emotional distress and alerted the therapist for follow-up, and (3) automatically suggested tailored recommendations based on participant needs. Online support group participants consisted of patients with various types of cancer, and the therapists were clinically trained social workers. METHODS: Our study reports on the mixed methods evaluation of AICF, including therapists' opinions as well as quantitative measures. AICF's ability to detect distress was evaluated by the patient's real-time emoji check-in, the Linguistic Inquiry and Word Count software, and the Impact of Event Scale-Revised. RESULTS: Although quantitative results showed only some validity of AICF's ability in detecting distress, the qualitative results showed that AICF was able to detect real-time issues that are amenable to treatment, thus allowing therapists to be more proactive in supporting every group member on an individual basis. However, therapists are concerned about the ethical liability of AICF's distress detection function. CONCLUSIONS: Future works will look into wearable sensors and facial cues by using videoconferencing to overcome the barriers associated with text-based online support groups. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/21453.

Refocusing on physical health: Community psychiatric nurses' perceptions of using enhanced health checks for people with severe mental illness.

In the present qualitative, descriptive study, we explored Hong Kong community psychiatric nurses' (CPN) perceptions of using comprehensive physical health checks for service users diagnosed with severe mental illness (SMI). Research interviews were conducted with a purposive sample of 11 CPN in order to explore their perceptions about the use of the Health Improvement Profile (HIP) over a 1-year period. Interview data were analysed using inductive thematic analysis. The analysis revealed that the majority of CPN appreciated the comprehensive focus on the physical health of their clients and reported positive changes in their clinical practice. Many of them observed an increase in the motivation of their clients to improve their physical health, and also noted observable benefits in service users' well-being. The use of the HIP also helped the CPN identify implementation barriers, and highlighted areas of the tool that required modifications to suit the local cultural and clinical context. To our knowledge, this is the first study conducted in an Asian mental health service that explores nurses' views about using comprehensive health checks for people with SMI. The findings suggest that such approaches are viewed as being acceptable, feasible, and potentially beneficial in the community mental health setting.