Individualised or Standardised Outcome Measures: A Co-habitation?

Mental health outcome measurement is conflicted between two different schools of thought which underlie the division between standardised (nomothetic) and individualised or patient-generated (idiographic) measures. The underpinning philosophies of both approaches have very different starting points in terms of how we understand the world. And yet the strengths of both may contribute something useful for patients and mental health services. We suggest a convergence of approaches with new thinking on options for co-habitation

Comparing parental stress of children with neurodevelopmental disorders : the case of Williams syndrome, Down syndrome and autism spectrum disorders

Background Although parental stress is higher for children with neurodevelopmental disorders (NDs), it is unclear how this stress compares to more common NDs. The current study compared stress in parents of children with Williams syndrome (WS), Down syndrome (DS) and autism spectrum disorders (ASD). The impact of individual and contextual factors was also explored. Method Parents of children with WS (n = 107), DS (n = 79) and ASD (n = 79) completed a background questionnaire, a parental stress questionnaire and a satisfaction with life questionnaire. Results Although all groups displayed similar levels of parental stress, the factors that influenced this stress differed between the groups. There were also differences for life satisfaction and relationships between parental stress and individual and contextual factors. Conclusions Although parents of children with NDs are not at an increased risk of parental stress, the results suggest that interventions should be syndrome‐specific

Evaluating the online delivery of an autistic-led programme to support newly diagnosed or identified autistic adults

Background & aimsExploring Being Autistic is an autistic-led group-based programme providing psychoeducation and peer support to newly identified/diagnosed autistic adults. In 2020, due to social distancing measures implemented following the coronavirus pandemic, Exploring Being Autistic was adapted for online delivery. Here, we aimed to replicate previous research into the in-person delivery of Exploring Being Autistic, to determine whether similar results were obtained when the programme was delivered online. Further, we aimed to identify the unique opportunities and challenges that online delivery afforded.MethodsWe used a community-based participatory research (CBPR) approach, whereby the autistic developer and facilitator of Exploring Being Autistic worked collaboratively with a team of academic researchers throughout the research process. Together, we evaluated two iterations of the online Exploring Being Autistic programme, involving 16 attendees. Attendees completed questionnaires before, during and after the programme. Attendees were also invited to participate in two post-programme (group or individual) interviews: one following the completion of the programme (time one) and another 6–8 months later (time two). Attendees were included in the research if they completed at least one questionnaire or interview. Data were analysed qualitatively, using reflexive thematic analysis.ResultsExperiences of participating in the programme tended to be positive. Participants appreciated the autistic-led nature of the programme, found unity in the diversity of the group, and developed a positive and practical outlook as a result of the programme. Further analyses of our data revealed mixed views regarding the online delivery of the programme. Opportunities of online delivery were noted, such as this mode of participation reducing cognitive load, enabling the programme to be accessible to more participants, and fostering meaningful social connections among participants. However, technology and practical issues were felt to cause barriers, and some human aspects of participation were felt to be ‘lost in translation’ (e.g., in breakout groups).ConclusionsThe online delivery of the Exploring Being Autistic programme yielded similar results to previous, in-person evaluations of the programme. While we identified positive aspects of online delivery, this mode did not entirely suit everyone's needs.ImplicationsFrom the current findings, we can make several recommendations to develop online support for autistic people. First, flexibility is key. To make support accessible and inclusive to a broad range of autistic people, the option for attendees to engage in-person, online or in hybrid formats should be considered. Second, if delivering support online, the use of breakout rooms should be carefully considered. While participants appreciated the opportunity to meet different people, some participants found the unpredictability and lack of scaffolding associated with breakout rooms challenging. To mitigate these challenges, groups could be pre-determined and shared with the attendees in advance (although consideration should be given to how the groups ‘fit’ together, and whether groupings should be changed at set intervals). Gentle warnings should also be given to those in breakout rooms, to alert them of the need to re-join the main group. Finally, support with technological aspects relating to engagement should be prioritised

Evaluating a New Supported Employment Internship Programme for Autistic Young Adults Without Intellectual Disability

Supported employment initiatives have been shown to increase employment rates for autistic people who want to enter the workforce. Despite the success of supported employment initiatives in increasing employment rates, little is known about the first-hand experiences and views of those involved. In the current study, we examined the experiences and views of autistic young adults without intellectual disability (ID; ‘interns’), employers and parents regarding a previously unevaluated paid internship scheme that offers tailored support for interns and employers before, during, and after the internship, the Employ Autism network. In total, 51 participants (19 interns, 22 employers, ten parents), across eight internships, engaged in semi-structured interviews. Reflexive thematic analysis was used to identify three themes, shared across participant groups: (1) the internship was “an invaluable experience”, (2) the internship helped break down autism-specific barriers to employment, and (3) stakeholder groups had some unmet expectations. Drawing on this multi-informant qualitative evaluation of a novel supported employment scheme, we derive recommendations of best practice for supported employment initiatives for autistic young adults without ID

PSYCHLOPS in Polish primary care: how do clients conceptualise their problems on a patient-generated outcome measure?

PSYCHLOPS in Polish primary care: how do clients conceptualise their problems on a patient-generated outcome measure? Author links open overlay panel MariaKordowiczaSƚawomirCzachowskibPeterSchofieldaMarkAshwortha Show more https://doi.org/10.1016/j.heliyon.2019.e02209 Get rights and content Under a Creative Commons license open access Abstract Background PSYCHLOPS, a patient-generated mental health outcome questionnaire, invites clients to describe the problem that troubles them most. PSYCHLOPS was utilised in Polish primary care in the context of a brief CBT-based intervention for mild to moderate mental health problems. Aim To explore how patients conceptualise their problems and the consequences of these problems with the aid of PSYCHLOPS. Method 243 patients were recruited from a primary care setting; 241 completed PSYCHLOPS. Free-text data were obtained from the Problem and Function domains of PSYCHLOPS, blind translated into English and independently analysed using a pre-existing thematic framework. A total of 780 free-text responses were analysed. Results The most commonly reported responses to the pre-therapy Problem domain category were “somatic” (denoting responses relating to physical health); the most common responses to the Function domain category were “competence/performance” (denoting responses relating to the respondents’ perceived ability to achieve, cope, function). Compared with pre-therapy Problem 1 domain categories, during-therapy responses revealed a higher proportion of the “interpersonal” category (denoting responses relating to social relationships) and a lower proportion of the “somatic” category. Conclusions Despite the brevity of clients' responses, PSYCHLOPS allowed an insight into patients' most troubling problems and their consequences. Possible reasons underlying the transition from a somatic to an interpersonal problem reporting during the course of talking therapy are discussed

Anxiety during Transition from Primary to Secondary Schools in Children with Neurodevelopmental Disorders: A Cross-syndrome Comparison

The current paper examined the impact of the transition from primary to secondary school on anxiety for children with Neurodevelopmental Disorders (NDDs), specifically for autistic children, children with Down Syndrome (DS) and Williams Syndrome (WS). Previous research has highlighted the impact such educational changes can have upon autistic children, but there is only limited research for children with DS and none for those with WS. Hence, this study aimed to better understand whether school transitions have a unique or similar impact on anxiety through a cross-syndrome comparison. Sixty-one parents as well as their autistic children, children with DS and WS completed an online survey at two time-points, which included questions on adjustment and psychopathology, maladaptive behaviours, and other open-ended measures about their child’s skills as well as their experiences of the transition from primary to secondary school. Children themselves completed a short interview as well as a set of cognitive abilities tasks. Both children and parents of all three groups expressed concerns about bullying and adjustment to new environments during transition from primary to secondary school. Although wide variability was found within the autism, DS and WS groups, no significant differences were revealed in overall levels of parent-reported anxiety before and after the transition for any of the groups. However, different factors, including maladaptive behaviour, social problems and peer problems predicted anxiety during pre- and post-school transition for the three groups. This first cross-syndrome comparison on the effect of transition from primary to secondary school on anxiety highlighted the importance of individual variability when examining the transition outcomes of children with NDDs. Additionally, it identified clusters of overlap in terms of parent-report and child-report experiences of transition and unique predictors that need to be considered when planning transition support for autistic children, children with DS and WS. Future research should investigate the role of protective factors both at an individual and school level to inform the development of evidence-based intervention that support successful transition to secondary education

Evaluating a new supported employment internship programme for autistic young adults without intellectual disability.

Internships designed for autistic people can help them to find employment, but there is little research about the experiences of those involved with internship schemes. To learn more about a new paid internship scheme in the United Kingdom, the Employ Autism network, we interviewed 19 interns, who were autistic young adults without intellectual disability taking part in one of eight different internships. We also interviewed 22 employers (who worked with the interns), and 10 parents (who supported their children in the internship). The interns, employers and parents told us that the Employ Autism network was a valuable experience that helped the interns become more confident. Also, the parents said it helped the interns become more independent. All the groups said the Employ Autism network removed common barriers to employment, and interns and parents said it would help interns get a job in future. Employers and interns said they understood each other better during the internship, and employers said the internship made them think about how their organisations might have accidentally had barriers in place that could stop autistic people getting employed (barriers that they wanted to address in future). However, all groups said some expectations of the internship were not met. These findings suggest the Employ Autism network is helpful for autistic young adults without intellectual disability and employers, but that there are ways that the internships could be improved in future. We discuss the lessons we can learn from the Employ Autism network that might help others who are thinking about setting up, or getting involved in, similar internship schemes

Evaluating the impact of an online autism training on changing employers’ autism knowledge and commitment to inclusion in the workplace

Employers’ knowledge about autism can be a key barrier to autistic people obtaining employment. The current study evaluated the efficacy of an online autism training program, Understanding Autism in the Workplace, in changing employers’ autism knowledge and commitment to inclusion in the workplace. Employers (N = 129) from 22 organizations in the UK completed the training with an autistic (n = 45) or non-autistic (n = 84) trainer and completed surveys measuring (1) autism knowledge and (2) commitment to inclusion in the workplace (CIW), before and after the training. Results showed that at a group level, autism knowledge and CIW improved from before training to after training for all participants, for both the autistic and non-autistic trainer. This latter result may be attributable to the training being co-designed by autistic people. At an individual level, however, only a minority of participants (both with an autistic and non-autistic trainer) showed a significant increase in autism knowledge (10.1%) and CIW (5.8%), suggesting autism training was more effective for some participants than others. Autism training should not be the sole initiative to address barriers to employment for autistic people but should be part of a broader package of support for employers