Problem

Research highlights the importance of psychoeducation about autism spectrum disorder (ASD) for parents of recently diagnosed children.1 2 Groups such as Early Bird and Early Bird Plus3 4 are available in the borough from other services, but have waiting lists of over 1 year. This was reflected in the referrals to City and Hackney Child and Adolescent Mental Health Services (CAMHS) for crisis management of school refusal, challenging behaviours and managing exclusions. Many families had not accessed information about ASD, did not understand the condition and had low confidence in their ability to manage the difficulties presented. With recognition that ASD is a lifelong condition, interventions are needed to be able to support these families who may experience difficulties at different transition points in their child’s development.

City and Hackney CAMHS is a community-based service within London providing mental health services for young people 0–18 years. The Autism Pathway provides assessment and a range of interventions for young people with ASD and their families. Our community is socioeconomically and ethnically diverse. Our young people attend mainstream and specialist schools locally and in neighbouring boroughs. This is a busy service with limited capacity to meet growing demand from families and schools.

In the 12 months since March 2016, there were 238 referrals for ASD assessments (ages 5–18 without learning disability). In addition, the Autism Pathway typically has a case load of approximately 60 children and young people who are in need of a specific intervention for a coexisting mental health conditions (eg, anxiety disorders/depression/attention deficit hyperactivity disorder). Clinician resources are limited with one consultant child and adolescent psychiatrist (4 sessions), one clinical psychologist (10 sessions) and some additional sessions from clinicians in different pathways for assessments. It was important that the pathway was able to develop innovative interventions to meet the needs of a large client group, with limited clinical resource.

A two-session psychoeducation group (‘ASD Psycho-education Group’) was devised for parents to increase their understanding of ASD, support parents to talk about their feelings surrounding the diagnosis and help them to develop some practical strategies to manage their child with ASD. Feedback from these groups was generally positive and highlighted that meeting other parents of children and young people with ASD was also very helpful. However, despite this providing the recommended follow-up to a specialist assessment,5 many parents reported the need for further advice and support to manage their child with autism, including ongoing access to support from a range of professionals (eg, occupational therapy [OT], speech and language therapy [SLT], psychology).

We also noted that many families were being referred to multiple services at the same time (CAMHS, OT, SLT) with some duplication of input. In collaboration with colleagues from OT and SLT, we developed groups covering different topics relevant to ASD (eg, managing challenging behaviour, developing social skills, how to talk about ASD) and teaching parents ASD-specific strategies: ‘Parent ASD Groups’. The aim was to help parents feel more able to cope with their child’s ASD. It was essential that there was a system in place to ensure that as many parents as possible were making use of the groups. It was also important that the groups were relevant and helpful to parents. Based on a previous experience of running a yearly ASD workshop, it was agreed that attendance of approximately 15–20 parents was manageable for facilitators, allowing space for questions, breaking out into small group work and making use of the room capacity.

The aim of the quality improvement (QI) project was therefore to ensure the ASD pathway maximised its limited resources by providing an ASD parent group intervention that was relevant for families, as measured by the following:

1. Increasing the total number of parents attending regular drop-in ‘Parent ASD Groups’ to 15–20 parents attending each group.

2. Parents reporting an increase in their own perceived confidence in their ability to manage their child’s ASD following attendance at a group.

3. Parent-reported satisfaction in the intervention being offered.

Background

ASD forms a significant proportion of the work within a CAMHS. At least 1 in 10 children with ASD will access CAMHS for further intervention for a coexisting mental health condition.6

Guidelines for the management and support for children with ASD5 7 provide some guidance on what services CAMHS should be offering. However many CAMHS have limited resources and there is less on offer to families beyond psychoeducation and signposting around the condition.

ASD is a lifelong developmental condition; children, young people and their parents typically need varying levels of professional support at different points in their development. Research has found prevalence rates of 70% of young people with ASD with at least one coexisting disorder and 41% with two or more.8 This may require additional CAMHS interventions such as structured individual therapy (eg, modified cognitive–behavioural therapy) or medication; however, this level of intervention is not always warranted. In many cases where CAMHS thresholds are not met, there is often a lack of appropriate service provision or expertise, and families are left to wait for problems to escalate.9

Research has found that parenting groups devised for typically developing children can be modified to incorporate our existing knowledge about ASD-specific strategies in the home and other settings (eg, predictability, routine, use of visual strategies, social skills teaching).10 These modifications have resulted in effective parenting groups specifically aimed at managing children with ASD.11 There is also evidence that teaching parents how to modify the environment around their child and implement ASD-specific strategies to manage behaviour in children with ASD can have a positive impact on the child’s emotion regulation and anxiety.12 Furthermore, ASD-focused parenting interventions have been found to reduce aggressive behavioural problems in children with ASD,13 and in the long term prevent children with ASD from developing further mental health issues.

Research into group work suggests a number of additional benefits, such as meeting other parents in a similar position and seeking support and advice from a parent who has the same issues. In addition, there is evidence to suggest increased parental self-efficacy14 and increased parenting satisfaction11 in this client group. From a service perspective, groups are a cost-effective way of delivering professional-led interventions to a large cohort of families.

Many parenting programmes aimed at this client group are closed groups and run for a limited number of sessions (eg, 12 sessions). There is little research into groups which provide ongoing ‘drop-in’ groups as a way of supporting parents of children with ASD. This QI project aims to provide some evidence that this model of working is a useful way for services to manage growing case loads of children and young people with ASD, who may otherwise not get a service (eg, without a severe coexisting mental health condition).

Measurement

Data collection began in February 2015. Primary measures included collecting data on the number of parents attending each ‘Parent ASD Group’; getting feedback from parents on the impact on their confidence in their ability to manage their child; and parent satisfaction following the group. With the advertisement and introduction of the group, there was an initial reasonable attendance of 13 parents. However, in the following months, this dropped to 7 and 9 parents, highlighting the need to understand and address the low uptake of the group intervention. The number of parents attending each group was recorded during a specific period of time (from February 2015 to May 2017), with the aim of increasing attendance to 15–20 parents per group (to maximise the capacity of the resources).

Other primary measures included collecting quantitative and qualitative analyses of responses to a questionnaire given to parents at the end of each group (see figure 1 for a copy of the questionnaire). A total of 20 groups have been run since the start of the QI project in February 2015. Of these, 190 questionnaires were completed out of a total of 295 attendees, a response rate of 64.4% of parents providing feedback.

• Download figure
• Open in new tab
• Download powerpoint

Figure 1

Copy of the parent questionnaire used to evaluate the groups. ASD, autism spectrum disorder.

Throughout the project, a number of Plan Do Study Act (PDSA) cycles were applied and evaluated using QI methodology with the aims to increase attendance and for parents to give positive feedback on their confidence in managing their child’s ASD following attendance at a group, as well as satisfaction with the group.

Design

There was a clear need to have an intervention offer in place that could appropriately meet the demands of a large cohort of families, and to do this with the limited resources available. The ‘Parent ASD Group’ aimed to address some of the needs of parents of children with ASD by offering a regular drop-in groups to support parents through key issues and times of transition for children and young people with ASD.

Staffing of the ASD pathway is limited (one clinical psychologist and one psychiatrist), and therefore the QI project team was small, formed of these two staff members. Regular monthly QI meetings were held to discuss progress, identify change ideas and plan PDSA. Due to the close working of the team, multiple conversations took place outside of formal QI meetings, which helped to generate more change ideas. The QI project started in June 2015 following QI training of staff within the ASD pathway. The groups were continually evaluated across a period of 2 years (until June 2017), when the project was completed.

The groups were formed by drawing on resources from other local services (eg, OT, SLT, educational psychology) outside of CAMHS. From the start of 2016 (following an initial planning and pilot phase), the groups ran on a regular basis, although PDSA cycles were carried out with less regularity due to resource and time constraints. It was important to involve parents via a focus group in the planning of the groups to ensure it was relevant and to increase motivation to attend. These families are often busy, and therefore an accessible reminder system was needed to ensure attendance to the groups. The group programme was set for a regular date/time, and this alongside the email system and collection of email consent from newly diagnosed families at feedback appointments meant the amount of resources required to ‘invite’ parents to the groups was low and easy to maintain.

This was an independent measures design as parents did not necessarily attend all of the groups due to the drop-in nature. Parents reported increased confidence in managing ASD, and satisfaction was measured independently of each group.

Strategy

Our primary aim was to increase attendance at the ‘Parent ASD Group’ to 15–20 parents each group. Quantitative and qualitative evaluation was used to determine how much each group helped parents feel more confident in their ability to manage their child’s ASD, as well as how satisfied parents feel about each group. This involved parent feedback following attendance at groups, in addition to a focus group. Please see figure 2 for a visual representation of the study driver diagram.

• Download figure
• Open in new tab
• Download powerpoint

Figure 2

The driver diagram used as a study protocol. ASD, autism spectrum disorder; CAMHS, child and adolescent mental health service.

PDSA cycle 2

In December 2015, the second PDSA was aimed at reviewing the relevance of the groups for parents with the view to increasing attendance. A second change idea was tested: run a focus group with parents within the ASD pathway to plan the future group programme. Ideas from parents included a regular slot (easier to remember, plan in advance); discussion around key topics relevant to parents’ needs; and the usefulness of handouts/resources, even if parents were unable to attend a group. This change idea resulted in useful qualitative data regarding what parents wanted from the groups (see figure 3 outlining some of the parents comments and suggestions). We learnt how to make the groups more appealing for parents and implemented a programme that included topic ideas from parents. This was helpful as a way of involving parents and making sure the groups were relevant to the parents’ needs. Feedback helped inform the group programme and continues to be important in the running of each group. However, this did not have a significant impact on the number of parents attending the groups.

• Download figure
• Open in new tab
• Download powerpoint

Figure 3

A table to show examples of the feedback families gave regarding the groups (collected during the focus group and as part of service user questionnaires). ASD, autism spectrum disorder; ECHP, education health Care plan.

Lessons and limitations

The groups have been a positive way of offering a service to a large number of parents of children with ASD in the context of limited resources. The groups offer parents a multiagency approach to understanding and managing their child with ASD (eg, psychology/OT). Parent feedback suggests parents learn about ASD and how to support their child with communication and social interaction, as well as develop strategies to manage their child’s emotions and sensory needs. QI methodology has assisted in identifying the problems (eg, sustaining repeated advertising of the groups) and identifying solutions (eg, email communication system) that are cost-effective.

There were some important observations made from the study that have not been captured in the data collection. New referrals into CAMHS for clients with an existing ASD diagnosis are being directed to the groups as the initial intervention offered within the service. For many, this is enough to address their needs. The family is then reviewed and closed (with the option to attend drop-in groups in the future if they would like to). In future, it would be useful to further explore the impact of attending groups on measures of behavioural difficulties and mental health in children and parents using a repeated measures study design with validated tools such as the Strengths and Difficulties Questionnaire.

For some families, the groups provide a containing intervention while they wait for a more intensive service. In addition, many existing clients have since been closed to the service but continue to access the groups intermittently as and when their needs change. We are observing the groups to be a helpful way to manage the flow in and out of CAMHS, with the groups providing support that is enabling families to manage themselves without continuous individual CAMHS interventions. These are important outcomes for how specialist services are run.

There were a number of limitations identified during the running of the QI project. The email reminder system continues to be reliant on one clinician to organise and send the reminders. There have been occasions during the project when this has not happened, and it was useful to note the direct negative impact this had on group attendance. In addition, we have identified some difficulties with recording the amount of clinical activity and client contacts, which requires more investigation as to how this issue can be resolved.