Health-related quality of life in family caregivers of autistic adults

IntroductionFamily members of autistic individuals often provide support for their autistic relative throughout the lifespan which can lead to massive burden themselves. Reduced health-related Quality of Life (HRQoL) in family caregivers is assumed; however, only a handful studies on the HRQoL of family caregivers providing care to adult relatives exist as opposed to autistic children. Thus, the current study aimed to (i) investigate the current state of physical and mental HRQoL of family caregivers of autistic adults compared to the general population, and (ii) examine caregiver-related (e.g., age, subjective caregiver burden) and care recipient-related variables (e.g., symptom severity, utilization of formal services) explaining variance in the caregivers’ HRQoL.MethodsN = 149 family caregivers completed a nationwide online survey, including the Short-Form Health Survey (SF-8) in order to assess the HRQoL. T-tests were used to compare the HRQoL of family caregivers with the general population. Bivariate correlational and multiple linear regression analyses were conducted in order to identify predictors explaining variance in family caregivers’ HRQoL.ResultsFamily caregivers of autistic adults reported significantly lower physical (M = 46.71, SD = 8.72, Cohen’s d = 0.42) and mental HRQoL (M = 40.15, SD = 11.28, Cohen’s d = 1.35) compared to the general population. Multiple linear regression with the mental HRQoL as the outcome showed a significant model (F(11, 95) = 5.53, p < .001, adj. R2 = .32) with increased subjective burden explaining most of the variance in mental HRQoL (ß = .32, GDW = .141, p < .001). Multiple linear regression analysis with the outcome physical HRQoL did not reveal a statistically significant model (F(11,95) = 1.09, p = .38). However, bivariate analyses also showed a positive correlation with the subjective caregiver burden (r= .20, p < .05).DiscussionFindings highlight the need to consider HRQoL (and caregiver burden) of family caregivers of autistic adults in several healthcare settings to monitor a potential comprised health status in early stages, with the long-term goal to improve family caregivers’ HRQoL

A mixed-methods investigation of barriers and facilitators in mental healthcare services for adults with autism spectrum disorders in Germany

The project will employ a mixed-methods approach to assess current barriers and facilitators for adults with Autism Spectrum Disorders (ASD) with respect to mental healthcare in Germany. During the first project phase, current barriers or needs and facilitators will be assessed at three levels (at the individual level, at the structural or organizational level of the healthcare system, and at the professional level of clinicians or healthcare service providers) and from three stakeholder perspectives (i.e., participants with ASD, relatives/caregivers, clinicians). For this purpose, both qualitative data (i.e., semi-structured focus groups and one-on-one interviews) as well as quantitative data (i.e., online surveys and questionnaires) will be assessed. Furthermore, costs due to medical and non-medical service utilization of ASD will be estimated and compared to utilization costs of individuals without ASD. Results and emerging themes will be used to develop a concept suitable for providing improved and extended mental healthcare for adults with ASD. This concept aims to include individual ASD patient parameters in order to provide a stepped-care approach and will include recommendations for patients, relatives and professionals. During the second project phase, the developed concept and its potential implementation within the German healthcare system will be evaluated qualitatively and quantitatively, again by assessments in different stakeholder groups (i.e., participants with ASD, relatives and clinicians) and formally analyzed with respect to cost-effectiveness and implementation chances. Our research project aims to strengthen a participatory research approach by including patients, relatives and professionals at all project stages. This includes project employees as well as cooperation with relevant associations. The study has been approved by the Local Psychological Ethics Commission at the Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf (date: 12/02/2020)

Barriers and needs in mental healthcare of adults with autism spectrum disorder in Germany: a qualitative study in autistic adults, relatives, and healthcare providers

Abstract Background Autism refers to a neurodevelopmental condition with characteristic impairments in social interaction and communication, restrictive and repetitive behaviors, as well as difficulties in sensory information processing and daily living skills. Even though symptoms persist from early childhood throughout the lifespan and often require long-term support, there is a lack of mental health services that sufficiently meet the needs of autistic adults. Previous evidence suggested individual, professional and structural barriers to healthcare for autistic adults. Here, using a peer research approach, we sought to systematically investigate barriers and needs in mental healthcare of autistic adults in Germany at the three relevant levels (individual, professional, structural) and from three relevant perspectives (autistic adults, relatives and healthcare providers), in order to obtain specific recommendations for optimized healthcare. Methods Maximum variation sampling was used to account for the complexity of the research field. Semi-structured, open-ended interviews were conducted with autistic adults (n = 15) and focus groups with relatives/partners (n = 12), and healthcare providers of several professions (n = 15). Data analysis was performed using the codebook approach of thematic analysis. Results Poor mental healthcare of autistic adults in Germany was characterized by six central and overarching themes: (i) lack of knowledge about autism, (ii) a need for increased participation/involvement, (iii) consideration of autism-specific needs in treatment, (iv) lack of services, (v) limited access to services, and (vi) improvement of stakeholder collaboration. Themes were similarly reported across participants, emphasizing dissatisfaction in all stakeholders. Conclusions We identified major barriers to mental healthcare for autistic adults in Germany that affect autistic adults, but are also of concern to relatives and healthcare providers. Our results point to specific and generic areas for improvement, independent of stakeholder perspectives, which could guide future development of needs- and evidence-based services, recommendations and guidelines of mental healthcare for people with autism across the lifespan. Trial registration This study protocol was preregistered at the Open Science Framework ( https://osf.io/5x8pg )