Unmasking the Struggle: A Scoping Review Exploring Post-Traumatic Stress Symptoms in Caregivers of Individuals with Neurodevelopmental, Psychiatric and Neurocognitive Disorders.

The impact of caregiving on caregivers' mental health is typically considered within the caregiver stress and burden literature; however, more recently, research has investigated the experience of post-traumatic stress symptoms (PTSS) in caregivers. As an emerging area of research, it is timely to conduct a scoping review to map the existing literature in relation to PTSS among adult caregivers of children and adults with neurodevelopmental disorders (NDD), neurocognitive disorders, and psychiatric disorders. The scoping review was conducted using Preferred Reporting Items of Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines and Arksey and O'Malley's five-stage methodology framework. Published and unpublished gray literature between 2005 and 2022 was included in the scoping review. Nine thousand one hundred and twenty-five studies were originally identified for screening and 22 studies were selected for inclusion in the final review. Trauma and PTSS experienced by NDD caregivers were related to news breaking, NDD diagnosis, and behavioral issues, whereas caregivers of individuals with psychosis reported aggression and violence as traumatic events. Studies showed that up to half of caregivers reported PTSS, although no conclusions could be drawn about prevalence rates. A wide variety of tools measuring PTSS were used across the 22 studies. Many symptoms of PTSS were reported by caregivers, and cognitive appraisals were associated with PTSS in caregivers. The findings highlight the importance of recognizing the impact of trauma in caregiver mental health and the potential value of using traumatic stress frameworks with these populations. Research should be expanded to establish prevalence rates and to examine the long-term impact of trauma on caregiving as caregivers and care recipients age.

Protocol for scoping review study to map out the existing research in relation to post-traumatic stress symptoms among caregivers of individuals with neurodevelopmental, psychiatric and neurocognitive disorders.

INTRODUCTION: The challenges of providing caregiving that impacts the caregiver have been attributed to high levels of intensity and physical strain, burden and distress. This is likely to include emotional and psychological distress as manifested in post-traumatic stress symptoms (PTSS). As this is a new area of investigation among caregivers of individuals with neurodevelopmental, neurocognitive and psychiatric disorders, the extent of the literature for PTSS in these groups of caregivers is limited and unclear. This scoping review aims to map the existing research focusing on key concepts and identifying gaps in relation to PTSS among these caregivers. METHODS AND ANALYSIS: The scoping review will be guided by Arksey and O'Malley's proposed 5-stage framework. A search for published and unpublished grey literature between years 2005 to 2020 in the electronic databases of CINAHL, SCOPUS, PsychInfo, OVID PubMed and ProQuest Dissertation, and Thesis Global electronic databases was conducted using keywords to identify relevant studies. Articles will be limited to the English language. Endnote 20 software will be used to eliminate duplicates, and results will be exported into Abstrackr for the review screening process consisting of two stages: title and abstract reviews and full-text reviews. Selection process of eligible studies will follow the recommendations in the Preferred Reporting Items of Systematic Reviews and Meta-Analyses Extension for Scoping Reviews checklist. A data chart will be used to capture relevant information from all included studies, and results will be presented in tabular form and in a narrative report. ETHICS AND DISSEMINATION: This scoping review consists of reviewing and collecting data from publicly available materials and hence does not require ethics approval. The scoping review results will be disseminated via publications in peer-reviewed journals and conference presentations. The results will also guide the design of a mixed method research study to examine the extent of trauma symptomatology and potentially traumatising experiences, and how they relate to the mental health of caregivers of adults with intellectual and developmental disability from different cultural backgrounds.

Family carers' experiences of providing care for their adult relative with intellectual disabilities and mental health problems in Singapore.

BACKGROUND: Families in Singapore are primarily involved in the care of their relatives with intellectual disabilities and the study aimed to explore their experiences taking care of their relatives with intellectual disabilities and mental health problems. METHOD: Nine unpaid family carers were interviewed. The interviews were analysed using Interpretative Phenomenological Analysis. RESULTS: Analysis revealed four themes 1) Making sense of behaviours; 2) Staff are the experts; 3) Public reaction and 4) Worries and hopes for the future. CONCLUSIONS: Family carers found it difficult to identify and manage the mental health symptoms of their relatives and sought help from specialist mental health professionals. They were satisfied with the specialist services and found psychotropic medication helpful to reduce the symptoms. Family carers expressed worries about their relative not being accepted by the public and did not make future care plans. More resources are needed to increase accessibility of specialist mental health services for people with intellectual disabilities. It is recommended for service providers to collaborate with family carers and provide them with resources and skills to empower them to care for their relatives with intellectual disabilities.

What do specialist mental health professionals think of the mental health services for people with intellectual disabilities in Singapore?

BACKGROUND: This research aimed to investigate the views and experiences of specialist mental health professionals working with adults with intellectual disabilities and mental health problems in Singapore in order to gain insight into the functioning of the local specialist intellectual disability mental health service and how it may be improved. METHODS: Eight staff members from specialist service were interviewed. The transcriptions of the interviews were analysed using thematic analysis. RESULTS: Analysis revealed four themes (1) Identifying their roles; (2) Ensuring continuity of care; (3) Disempowerment of service users and (4) Improving clinical practice. CONCLUSIONS: Participants identified the challenges they faced working with this population. They highlighted the importance of building therapeutic relationships during the treatment process and discussed the stigma that people with intellectual disabilities face in the community. Recommendations and implications are discussed in relation to service provision, improving staff knowledge and recruiting more staff to work in this field.

Services for people with intellectual disabilities and mental health problems in Singapore: perspectives from mainstream mental health professionals.

Background: Generic mental health staff often have contact with people with intellectual disabilities when they access mainstream mental health services. To date, there has not been any research conducted in non-western countries to explore their views. This paper investigates the views and experiences of mainstream mental health professionals regarding the mental health services for people with intellectual disabilities in Singapore. Methods: Eight staff members from generic mental health services were interviewed. Thematic analysis was used to identify main themes. Findings: The main themes are related to their work experiences, perceptions of people with intellectual disabilities, ideal staff characteristics and service recommendations. Conclusions: Participants identified a lack of experience and knowledge when working with this population. They highlighted the challenges they face promoting choice and autonomy for people with intellectual disabilities. The discussion includes recommendations for improving staff knowledge through training opportunities, consideration of non-pharmacological approaches and early collaboration with caregivers during the treatment process.

Adult neurodevelopmental services in Singapore: A sociodemographic and clinical profile at a tertiary psychiatric hospital.

INTRODUCTION: The Adult Neurodevelopmental Service in Singapore is the first service of its kind in South-East Asia for adults with intellectual disability (ID) and/or autism spectrum disorder (ASD). However, few studies have documented and compared the sociodemographic characteristics and clinical needs of this subpopulation group. METHODS: Initial assessments conducted from 1 January 2015 to 31 December 2016 were retrospectively reviewed for this descriptive study. RESULTS: A total of 272 patients were included in the study (mean age 28.3 ± 11.5; 200 males, 72 females). Adults with ID comprised the largest percentage (52.9%), followed by those with ASD (30.2%), and then those with co-occurring ASD and ID (16.9%). The ASD subgroup had the highest proportion of individuals with employment, postsecondary school education, functional capabilities, and a psychiatric disorder. In comparison, adults with only ID and adults with co-occurring ASD and ID shared similar lower levels of education and employment, and had a higher proportion of individuals with epilepsy and aggressive behavior. DISCUSSION: In this study, adults with ASD had a unique social profile with different clinical needs compared to adults with only ID or to adults with co-occurring ASD and ID. Adults with only ID and those with co-occurring ASD shared many of the same social characteristics and high clinical needs. The analysis of these profiles will be useful in developing services that better meet the needs of this complex group.