Scoping the evidence for EarlyBird and EarlyBird Plus,two United Kingdom-developed parent education training programmes for autism spectrum disorder

Abstract

EarlyBird and EarlyBird Plus are parent education and training programmes designed by the UK National Autistic Society in 1997 and 2003, having been delivered to more than 27,000 families in 14 countries. These group-based programmes aim to (1) support parents immediately after diagnosis of autism spectrum disorder, (2) empower parents, encouraging a positive perception of their child’s autism spectrum disorder and (3) help parents establish good practice. In the absence of any previous comprehensive review, we performed a scoping review of all peer-reviewed publications on EarlyBird/EarlyBird Plus. A search was conducted between February and June 2016 using EbscoHost, Sabinet, SAGE Journals, Directory of Open Access Journals, BioMed Central, Scopus, ScienceDirect and grey literature. Two reviewers independently screened titles and abstracts for inclusion. In total, 18 articles were identified: 16 from the United Kingdom and 2 from New Zealand. We reviewed the context, study populations, design, outcome measures, whether focus was on parental perception, parental change or child changes and programme feasibility. Strong parental support for the acceptability but lower level evidence of efficacy of EarlyBird/EarlyBird Plus was found. Future research should consider randomised controlled trials. There is no research on EarlyBird/EarlyBird Plus in low-resource settings; therefore, we recommend broader feasibility evaluation of EarlyBird/EarlyBird Plus including accessibility, cultural appropriateness and scalability.

Keywords

autism EarlyBird feasibility parent education training scoping review

Introduction

Autism spectrum disorder (ASD) is a neurodevelopmental disorder with the core features of persistent impairment in reciprocal social communication and social interaction and the presence of restricted and stereotypical behaviours (American Psychiatric Association (APA), 2013). In recent studies, the reported population prevalence of ASD was in the region of 1% (APA, 2013; Blumberg et al., 2013; Christensen et al., 2016). In addition to its high prevalence, ASDs also account for substantial health loss across the lifespan as measured by disability-adjusted life years (Baxter et al., 2015).

To mitigate against such significant potential loss, the need for post-diagnostic intervention and support has been highlighted as part of best practice (Lauritsen, 2013; National Institute for Health and Care Excellence (NICE) Guidelines, National Collaborating Centre for Women’s and Children’s Health, 2011). Even though the fundamental aim in contemporary ASD interventions is to target the core deficits associated with ASD using a range of naturalistic developmental behavioural interventions, including Early Intensive Behavioural Intervention (EIBI; see Schreibman et al., 2015), it is recognised that the functioning and quality of life of a person with ASD are also highly dependent on family and parental factors such as parental knowledge, stress and family support. There is evidence that parental factors can have a direct impact on adherence to interventions and to their efficacy (Grindle et al., 2009; Remington et al., 2007). For example, Grindle et al. (2009) explored the experience of parents attending EIBI programmes over 2 years and highlighted the need to ‘directly address the emotional well-being of parents of children on EIBI programmes’. They concluded that EIBI courses, in particular, should provide more support for families on home programmes, emphasising that such targeted family support may have positive impact on outcomes for children with ASD (Grindle et al., 2009). For these reasons, parent education and support is a key component of ASD interventions (Lauritsen, 2013).

Bearss et al. (2015) provided a useful framework and taxonomy for ASD interventions involving parents and/or carers. They suggested a distinction between ‘Parent Support’ programmes, where the parent/carer is the direct focus and the child is an indirect beneficiary, in contrast to ‘Parent/carer-Mediated Interventions’ where parents/carers are coached to work directly with their children and the child is therefore the direct beneficiary of the intervention. The programmes reviewed here are predominantly ‘parent support’ in nature given that the focus is on education work with parents/carers, and children are not direct participants in the programmes. However, the EarlyBird/EarlyBird Plus (EB/EBP) programmes do also include some home visits, where video-guided coaching and training are included. In terms of the Bearss et al. (2015) taxonomy, the programmes are therefore hybrids between ‘parent support’ and ‘parent-mediated interventions’. For this reason, we will use the term parent education and training (PET) when referring to the EB/EBP and similar programmes. We define PET as the passing on of information or skills to parents using a range of modalities (didactic, role play, discussions, video guidance) in a context where parents/carers and trained facilitators are the direct participants. By implication, the emphasis is on knowledge transfer to parents/carers and the priority participants are parents/carers and not the parent–child dyad.

Research on PET for ASD is relatively limited and few studies have evaluated any PET as stand-alone interventions even though access to quality information is one of the most requested needs by parents of children with a recent diagnosis of ASD (Bearss et al., 2015; Hamilton, 2008; Whitaker, 2002). In a very helpful review, Schultz et al. (2011) summarised the literature on PET for ASD published between 1987 and 2007. Previous reviews of this area had all demonstrated the benefits of parent education (Brookman-Frazee et al., 2006; McConachie and Diggle, 2007) and indicated that PET can increase parental knowledge and skills in managing behaviour and teaching children communication and social skills (Charlop-Christy and Carpenter, 2000; Solomon et al., 2007). Additional benefits of reducing parental stress and increasing parental sense of competence were also highlighted. The Schultz et al. (2011) review sought to build on these findings by determining the key characteristics of PET programmes along with how they were evaluated and what outcomes were reported on. A limitation acknowledged in their otherwise comprehensive review was that only articles from the USA were included. The authors stated that ‘without question, parent education in other countries would contribute to our understanding of the research in this area’ (Schultz et al., 2011, p. 102). The authors also encouraged future researchers to include detailed information about the components of PET that might allow replication and extend the field.

Schultz et al. (2011) identified 30 articles that met their inclusion criteria. Interestingly, the majority of programmes used a one-on-one approach (80%), although positive outcomes were reported regardless of format (1:1 or group based). They commented that, while one-on-one approaches may provide individualised learning opportunities, a group approach could be both more cost-effective and have the potential to reach larger groups of parents. Schultz et al. recommended that further research should seek to isolate the variables associated with effective group-based education. Farmer and Reupert (2013) also commented that group programmes have the added value of promoting mutual support and opportunities to share personal experiences with other parents.

The evaluation of ASD PET programmes has typically focused on a range of outcomes such as increased parental knowledge, enhanced competence in advocating for the child, decreased parental stress and a reduced sense of isolation (Farmer and Reupert, 2013; Tonge et al., 2014). Parental stress, in particular, has shown marked reductions in response to parent education (Koegel et al., 1996).

Schultz et al. (2011) sought, as part of their systematic review, to determine the manner in which the ASD PET was evaluated. They noted that the majority of the research used single-case designs (70%) followed by pre- and post-test designs. To this extent, Schultz et al. (2011) suggested that the current literature reflected the relative infancy of ASD PET literature. They further recommended that future researchers include detailed information about programme components and to extend the field, promoted replication.

Initial feasibility research is considered an important component of programme evaluation in this area, particularly given the infancy of the ASD specific literature. Feasibility in academic literature, and particularly in the field of health interventions, covers a broad range of constructs (Brooke-Sumner et al., 2015). Bowen and colleagues (2009) suggested that feasibility, using its broadest definition, can be divided into eight subgroupings, namely, acceptability (e.g. how participants perceive an intervention), demand (is the intervention taken up?), implementation (can it be delivered?), practicability (despite constraints of time and resources), adaptation, integration, expansion and limited efficacy testing. Progress on how best to assess feasibility, particularly in mental health services in high-income countries (HICs), has improved (Bird et al., 2014; Brooke-Sumner et al., 2016).

EB and EBP, two group-based PET programmes

The EB programme, designed to assist parents and caregivers of pre-school children who had recently been diagnosed with an ASD, is an example of a PET programme. The programme was developed as a 12-week group-based programme by the UK National Autistic Society (NAS) in 1997 based on a number of theoretical models. Its broad aims were (1) to support parents immediately after diagnosis, (2) to empower parents and encourage a positive perception of their child’s ASD and (3) to help parents establish good practice. ‘Good practice’ was defined by the developers as the parents’ ability to understand ASD and to manage the effects of ASD on the child’s development (Shields, 2000). The EBP programme, for parents of school-going children under the age of 9 years, was developed in 2003 and has broadly similar aims to EB. Apart from age, the other difference in EBP was that families could also invite one additional professional who regularly works with the child to attend the course with the parents/caregivers. A maximum of six families at a time can attend the EB programmes.

Each EB group session is 2.5 h and is closely structured, following the protocol given in the training manual. Following attendance of a pre-programme information meeting describing what EB is, parents then agree to take part in the programme and a home visit is done. A summary of the structure that then follows is presented in Table 1.

Table 1.

Summary of EarlyBird programme structure.

Name	Theme	Brief description
Group session 1	Autism	Introduction to Autism What is EarlyBird? How people with Autism experience the world
Group session 2	Autism and communication	How people with Autism make sense of the world Communication development Communication in people with Autism
Group session 3	Working with your child	Useful techniques to help learning Playing people games
Home visit A	People games	Practice a parent–child interaction games
Group session 4	Visual structure and support	Report back/sharing people games Supporting communication Visual support and structure
Group session 5	Preventing problems and developing play routines	Hyperlexia and use of books Play and children with autism Daily and play routines
Home visit B	Play routines	Practice a routine at home
Group session 6	Understanding behaviour	Sharing play routines Using the iceberg to analyse behaviour The STAR approach
Group session 7	Managing behaviour (A)	Repetitive behaviour, special interests and obsessions Temper tantrums and aggression Fears and phobias
Home visit C	Something to celebrate	Parents choice of activity Encourage identification of goals
Group session 8	Managing behaviour (B)	Eating Sleeping Toileting and hygiene Summing up and celebration
Follow-up session either group or home visit (3 months later)	Review	Celebrate adults/child progress over the past 3 months Collect follow-up questionnaires

EB/EBP was specifically developed by the NAS, the leading non-profit organisation for ASD in the United Kingdom, to assist parents directly after diagnosis. It is widely implemented in the UK National Health Service (NHS) as a first-line post-diagnostic intervention for ASD, following which more individualised interventions can be accessed. To date, over 27,000 families in the United Kingdom and 13 other countries have participated in EB/EBP programmes. The programmes are run by licensed trainers who have undergone a 3 days training provided by the NAS. At present, there are 3657 EB/EBP trainers registered with the NAS who are able to deliver the programme.

Since its development, the vast majority of research on the EB and EBP programmes has reported positive outcomes and suggests that it meets its intended aims (e.g. Birkin et al., 2008; Hardy, 1999; Shields and Simpson, 2004). Parental responses detailed in the research have indicated that the programmes have empowered parents, reduced stress levels and facilitated positive perceptions of their child’s ASD.

Despite the wide-scale implementation, there has, however, to date, not been any comprehensive or independent review of the evidence-base for the EB programmes. We therefore set out to summarise the landscape of EB/EBP research by evaluating the context for programmes, study populations, design, outcome measures used, and whether the focus was on parental perception, parental change or on child change. In addition, we specifically set out to examine which other aspects of feasibility had been evaluated.

Methods

The current review employed a scoping review methodology. Scoping reviews have been defined as ‘a process of mapping the existing literature or evidence base’ (Armstrong et al., 2011) with the aim of describing the extent and nature of the programmes, summarising existing literature about the programmes as well as identifying potential research gaps in the body of knowledge to inform future research (Arksey and O’Malley, 2005; O’Flaherty and Phillips, 2015).

Search procedure

A search during the months of February to June 2016 was conducted including relevant articles up to June 2016 and using the following databases and journals: EbscoHost (which included Africa Wide, Medline, CINAHL, Academic Search Premier, ERIC, Health Source: Nursing/Academic Edition, PsycARTICLES, PsycINFO, SocINDEX), Sabinet, SAGE Journals, Directory of Open Access Journals (DOAJ), BioMed Central, Scopus and ScienceDirect. The databases were searched for articles that have used the NAS’ EB and EBP programmes with no date restrictions. The review protocol was registered and approved on the PROSPERO – International Prospective Register of Systematic Reviews (CRD42016039111).

The searches were conducted, by two reviewers (J-J.D-S. and E.L.D.) independently, using the following keywords with Boolean logic and operators: ‘EarlyBird’, ‘EarlyBird Plus’, ‘Autism’, ‘Parent Skills Training’, ‘Skills Training’, ‘Psychoeducation’, ‘Parent Support’, ‘Parenting Programmes’ and ‘Parent Training’. The two reviewers (J-J.D-S. and E.L.D.) independently screened titles and abstracts of studies using the inclusion criteria. Where consensus during the searches and screening were not met by the two reviewers, the senior author (P.J.d.V.) was involved to help reach a consensus decision. In the searches and screening of the review, there was, however, no need to employ a consensus strategy. The inclusion criteria for studies to be considered within the review were that the research study had to (1) be published in any available language, (2) with no date restrictions, (3) be a study of either EB or EBP and could be (4) any study design, given the aim to provide a comprehensive overview of all studies using the programmes since its development and (5) using a quantitative, qualitative or mixed methodology.

The initial screening of the selected databases yielded 831 studies of which 780 did not meet the inclusion criteria (see Figure 1 for a flow diagram) leaving 51 studies. The 51 studies were then screened for any duplicates and 15 studies remained after the removal of duplicates generated across the different databases selected. Searching the reference lists of the 15 retrieved studies by hand, 9 additional studies (including journal articles and dissertations) were retrieved.

Figure 1.

Review flow diagram.

When the additional studies were included in the pooled sample of retrieved studies, an additional screening was conducted to remove any new duplicates that might have emerged. Six new duplicates emerged in the retrieved sample of studies, leaving the total number of included studies in the review at 18. The 18 studies then underwent data extraction, by the two independent reviewers. Data extraction took place using a data extraction sheet that gathered data pertaining to author details, study aims and purpose, study sample and setting, study design, outcome variables measured or examined in the study, main study findings and major strengths and limitations in the study. An additional data extraction process was followed to examine and extract data about the feasibility of the studies taking into consideration elements of feasibility as outlined by Bowen et al. (2009). These elements included acceptability, delivery, implementation, practicability, adoption, integration and expansion, in addition to efficacy testing.

Results

Overview of reviewed studies

The final sample of 18 studies included in the review consisted of 13 studies of the EB parenting programme, 2 using the EBP programme and 3 using both the EB and the EBP programmes. Geographically, 16 of the studies were conducted in the United Kingdom and 2 in New Zealand. The publications included four quantitative, five qualitative, six mixed-method and three factual descriptions of the programmes without any quantitative or qualitative data.

Study design

The results presented in Table 2 show that seven studies were descriptive in design with a focus either on describing the EB and EBP parenting programmes or where the parental perceptions of the programmes were described. Among the descriptive studies, four employed a qualitative method component to examine participants’ perceptions of the EB parenting programmes. There was no explicit mention of the data analysis technique employed in three of the four studies, with the exception of one mixed-method study (Birkin et al., 2008) that made use of content analysis.

Table 2.

Summary of all studies on EarlyBird and EarlyBird Plus.

First author (year)	Purpose of study/paper	Sample and setting	Study design and intervention	Outcome variables with measures	Findings	Major strengths and limitations	Parental views	Parental changes	Child changes	Feasibility
Factual descriptions (without data)
Shields (1999)	Descriptive paper about EarlyBird	N/A United Kingdom	N/A	N/A	N/A	Good description of EarlyBird intervention. Did not provide details regarding the evaluation of the efficacy of intervention (such as RCT)	Y	N	N	AC
Shields (2000)	Descriptive paper about EarlyBird	N/A United Kingdom	N/A	N/A	N/A	Describes what the EarlyBird intervention is well but does not provide any details regarding the evaluation of efficacy of intervention using an RCT, for example	Y	N	N	AC
Shields (2001)	Descriptive paper about EarlyBird	N/A United Kingdom	N/A	N/A	N/A	Provides insight into the EarlyBird intervention but does not provide details regarding the efficacy of the intervention	N	N	N	AC, P, IM, AD, IN, EX, ET
Quantitative research designs
Shields and Simpson (2004)	To evaluate the EarlyBird intervention, to establish differences between the control and intervention period and to compare differences between EarlyBird and licensed user sites	119 families of children with ASD. 36 attended intervention at EarlyBird centre (24 were delayed treatment controls) and 83 at licensed user sites United Kingdom	Non-randomised control design: repeated measures/delayed treatment design Intervention: EarlyBird	Parental stress: Parenting Stress Index – Long Form Number of words used during parent–child interaction: video word count Child behaviour: Childhood Autism Rating Scale Child development: Vineland Adaptive Behaviour Scale – Long Form	No significant changes during pre-treatment phase of delayed treatment controls For total sample significant improvements in parental stress, communication and video word count post-intervention Differences between EarlyBird and licensed user sites: Parental stress were higher at T2 but declined between T3 and T4 for the EarlyBird sites and licensed user sites started at lower levels and had a weaker decline. For socialisation, there were significant improvements between T3 and T4 than between T2 and T3, the opposite was found for licensed user sites Parents felt more confident about managing their child and would recommend to other parents	The strength of this study is the use of a control as part of this non-experimental/non-randomised control design. Study failed to make use of randomisation in allocation of control and experimental groups	Y	Y	Y	AC, IM, IN, EX, ET
Anderson (2006)	Study 1: To evaluate the EarlyBird intervention Study 2: To establish whether there was a change over time after participation in the EarlyBird intervention	Study 1: 54 families who have children diagnosed with ASD Study 2: Eight families who have children diagnosed with ASD New Zealand	Study 1: Non-randomised control study: Prospective Cohort Study Study 2: Non-randomised control study: Prospective Cohort Study Intervention: EarlyBird	Study 1: Parents perceptions of the severity of symptoms and parental stress: Child Autism Rating Scale – Parent Version Evaluation of skills: Autism – Parenting Questionnaire Study 2: Evaluation of skills: Autism – Parenting Questionnaire Assessing family relationships, personal growth and familial functioning: Family Environment Scale Parental stress: Parental Stress Index Parent behaviour observation and verbal behaviour: Using video recordings	Study 1: Parents showed a significant increase in the skills that they learnt but there were no significant differences in parents’ perceptions of the severity of the symptoms and parental stress post-intervention Study 2: Parents showed a significant increase in their autism specific skills and knowledge over time. Families employed more control within the familial environment post-intervention	Study 1: The study developed an instrument to assess parents’ knowledge and skills for autism interventions which adds to current assessment of interventions. The study, however, also made use of both a normal and condensed version of the intervention. Even though there were no significant differences in the findings between these two intervention options, it still deviates from the EarlyBird intervention as set out. The condensed version was not described in detail Study 2: Small sample so results should be interpreted with caution	Y	Y	Y	AC, D, IM, P, AD, IN, EX, ET
Murray (2011)	To examine the impact of the EarlyBird and EarlyBird Plus interventions on the parent–child relationship and family well-being	EarlyBird/EarlyBird Plus: 23 parents who have children diagnosed with ASD Comparison group: 18 parents who have children diagnosed with ASD United Kingdom	Non-randomised controlled design: Controlled before-and-after study Intervention: EarlyBird/EarlyBird Plus	Expressed emotion: Autism-Specific Five Minute Speech Sample (AFMSS) Level of participation in family activities: Family Well-being Checklist	No significant differences were found for parents who attended the intervention and those who did not in terms of expressed emotion and family activities	One of the first studies to make use of both EarlyBird and EarlyBird Plus programmes in one study. However, the study did not provide separate results for EarlyBird versus EarlyBird Plus intervention – which could have allowed for the examination of possible differences in impact between the two interventions	Y	Y	N	ET
Stevens (2013)	To evaluate the efficacy of EarlyBird and EarlyBird Plus intervention	136 participants: EarlyBird: 48 parents/caregivers EarlyBird Plus: 58 family members and 30 supporting professionals United Kingdom	Quasi-Experimental Design Intervention: EarlyBird EarlyBird Plus	Perceptions of intervention: Post-intervention questionnaires	Parents and professionals showed significant change in knowledge post-intervention. Participants from EarlyBird Plus intervention indicated less change than those in EarlyBird intervention	The paper provides a good description of the EarlyBird and EarlyBird Plus programmes and provides insight into differences in knowledge and understanding of autism across the two programmes. The study indicated differences across programmes descriptively but did not test for any significant differences across groups	X	Y	N	AC, P, AD, EX, ET
Qualitative research designs
Whitaker (2002)	Descriptive paper about an educational support project that included the EarlyBird intervention	35,000 under 5-year olds with a diagnosis of ASD and their parents United Kingdom	Quasi- Experimental Design Intervention: EarlyBird as part of a support project	Perceptions of intervention: Intervention evaluations	Parents rated the interventions as useful, particularly with regard to autism knowledge, management and techniques and promoting expressive and repetitive communication	Integrating the intervention as part of a bigger support project allowed for a greater access to EarlyBird intervention. The study only made use of post-intervention evaluations and could have made use of more objective measures as part of an RCT to examine the efficacy of the intervention	Y	N	N	AC, IM, P, AD, IN, EX, ET
Birkin (2008)	To determine (1) the extent to which families find out about the availability of the EarlyBird intervention, (2) the factors that influence their decisions to participate and (3) what the barriers are that prevent participation	Study 1: 77 caregivers who have children with ASD Study 2: 12 key informants from three ethnic minority groups (Maori, Pasifika and Korean) New Zealand	Study 1: Descriptive study Intervention: EarlyBird Study 2: Descriptive study Intervention: None	Study 1: Knowledge of EarlyBird intervention, reasons for non-participation, barriers to access, and barriers to participation for ethnic minority groups: Retrospective study designed survey questionnaire Study 2: Cultural barriers to uptake of EarlyBird intervention: Semi-structured interview	Study 1: 64 participants heard about EarlyBird, of which 28 had participated in the intervention. Significant differences were found between those who attended the intervention and those who did not in terms of ethnicity – ethnic minority groups were less likely to participate. Participants also listed the programme as not being convenient in terms of time as one of the barriers for non-participation Study 2: Participants listed conducting an intervention in English is a barrier. Also, time constraints, shyness coming from minority groups were reasons ethnic minority groups listed for non-participation	Study 1: One of the few studies to examine the EarlyBird intervention outside of the United Kingdom and provided some insight into the feasibility of the intervention among a non-UK sample and considering ethnic minority groups. The study, however, made use of a small sample; therefore, results should be interpreted with caution Study 2: The study provides some of the barriers that ethnic minority groups have in intervention participation which could be addressed in making an intervention more feasible	Y	N	N	AC, D, P, IN
Halpin (2011)	Descriptive paper on the EarlyBird intervention as part of an interagency/multidisciplinary team	N/A United Kingdom	Descriptive study Intervention: EarlyBird	Perception of intervention/efficacy: Post-intervention questionnaires	Parents reported finding the intervention useful in understanding their children and feeling more confident in their parenting	The study implemented the intervention as part of a multidisciplinary team which allowed for more trained EarlyBird facilitators to access more parents. The study, however, failed to describe the number of participants as well as the analysis and presentation of the results	Y	Y	N	AC, D, IM, P, AD, IN, EX, ET
Clubb (2012)	To evaluate the efficacy of EarlyBird and EarlyBird Plus interventions	EarlyBird: 38 families EarlyBird Plus: 47 families and 45 school staff United Kingdom	Descriptive study: Qualitative – Case study design Intervention: EarlyBird EarlyBird Plus	Perception of intervention/efficacy: Post-intervention questionnaires	Themes generated for parents’ perceptions included increased knowledge of autism, diagnosis acceptance, increased emotional well-being, problem solving skills and school–home partnership Trainers’ perceptions of the intervention included shared understanding of autism, benefits in multi-professional teams and home visits provided parents with a safe space	The study added to what currently is known about the study by considering what trainers considered as being effective in the interventions. The study could have presented differences in themes for those who attended the EarlyBird versus the EarlyBird Plus programme to establish any similarities or differences across the two programmes	Y	N	N	AC, P, AD, IN, ET
Montgomery (2012)	To evaluate EarlyBird intervention in Camden	Six families with a child with ASD United Kingdom	Descriptive study: Qualitative – Case study design Intervention: EarlyBird	Perception of intervention: Post-intervention questionnaires	Parents reported increased understanding of autism and gained behaviour and communication techniques to apply in the home	The report presents one of the first thorough descriptive evaluations of EarlyBird. Study relied largely on qualitative data from evaluation forms and had presented lots of findings that have previously been reported in the United Kingdom	Y	Y	N	AC, P, AD, IN
Mixed research designs
Hardy (1999)	To evaluate the EarlyBird intervention and identify significant changes in parental stress, perceived adaptive functioning of the child and interaction	30 families (18 – experimental groups; 12 – control groups) United Kingdom	Non-randomised control study: Repeated measures design Intervention: EarlyBird	Parent perceptions of how intervention contributed to significant change: Post-intervention feedback forms Child developmental characteristics: Vineland Adaptive Behaviour Scales – Revised Parental Stress: Parental Stress Index Confirm diagnosis of autism: Childhood Autism Rating Scale Child’s level of communication with parent: Receptive-Expressive Emergent Language Scale Parent Confidence: Parent Confidence Questionnaire	Significantly lower parental stress among parents attending the EarlyBird intervention – this persisted at 6-month follow-up. Reduced language displayed by parents during structured play and parents viewed their children as ‘less autistic’ after the intervention. Increased adaptive functioning and communication levels were also seen	Good attempt at examining the effect of the EarlyBird intervention, not only for parents but also on the perceived functioning of the child. Made use of a non-randomised allocation to control and experimental group	Y	Y	Y	AC, P, AD, ET
Morris (2002)	To evaluate the EarlyBird intervention	Six parents of children diagnosed with an ASD United Kingdom	Quasi-Experimental Design: Interrupted time-series study Intervention: EarlyBird	Child communication: Communication Questionnaire Parent Knowledge: Post-programme questionnaire Perceptions of intervention: Intervention evaluations	Three parents rated great changes in child communication, two rated somewhat of a change and one did not notice marked changes Parents rated programmes as helpful and understood more about their child’s diagnosis, understood behaviour and increase in previous knowledge post-intervention	Good attempt at evaluating the EarlyBird intervention. No use of RCTs to assist in establishing cause and effect between treatment and outcome	Y	Y	Y	AC, P, IM, AD, IN, EX, ET
Engwall (2003)	To evaluate the EarlyBird intervention focusing on parental stress, knowledge of autism as well as child communication and behaviour	24 families of children diagnosed with ASD United Kingdom	Quasi-Experimental Design: Interrupted time-series study Intervention: EarlyBird	Parental stress: Parenting Stress Index – Short Form Perception of intervention: EarlyBird intervention evaluation	Parental stress significantly reduced post-intervention Most parents felt more confident about managing their child, improved knowledge and communication post-intervention	The study highlighted how the intervention found significantly reduction in parental stress post-intervention. One of the limitations in that a non-randomised controlled study design was used	Y	Y	N	AC, IM, ET
McCauley (2010)	To establish whether one can measure individual patterns of development and the factors that appear to be important in encouraging any measured development of a group of pre-school children with autism Establish views of parents participating in EarlyBird Perceived improvements in child’s development Impact of and challenges of accessing EarlyBird	Three parents who have children diagnosed with ASD United Kingdom	Quasi-Experimental Design Intervention: EarlyBird	Social interaction, communication, stereotyped behaviour, autism severity: Gilliam Autism Rating Scale (second edition) Adaptive behaviour (communication, social interaction skills, adaptive behaviour): Vineland Adaptive Behaviour Scales (second edition) Conduct problems, inattention/hyperactivity, emotional symptoms, peer problems, and prosocial behaviour: Strengths and Difficulties Questionnaire Cognitive ability: British Ability Scale (second edition) Perceptions about programme: Semi-structured interview	Parents reported reduced stress	Parental stress was not measured objectively	Y	N	Y	AC, D, P, AD, IN, ET
Peters (2014)	To evaluate how learning support assistants benefit from EarlyBird Plus intervention	Questionnaires: Sample size unknown Semi-structured interviews: three parents/caregivers, three learning support assistance and three school staff members who did not attend intervention United Kingdom	Quasi-Experimental Design: Quantitative – Descriptive statistics Qualitative – Case study design Intervention: EarlyBird Plus	Perceptions of intervention: Post-intervention questionnaire and semi-structured interviews	Learning support assistants reported an increase in knowledge about autism and felt confident about using strategies learnt post-intervention The themes generated from the interviews included increase in knowledge and confidence in using strategies learnt, gained new strategies and noted improvements in child behaviour, consistency in strategy use across home and school	The study provided insight into the learning support assistants perceptions of the how beneficial the EarlyBird Plus programme is. The study, however, failed to mention sample size of participants who completed questionnaires	N	N	N	AC, AD, ET
Cutress (2014)	To report parent’s views of the EarlyBird Plus intervention	120 parents/carers from 25 EarlyBird Plus intervention groups United Kingdom	Quasi-Experimental Design Intervention: EarlyBird Plus	Perceptions of intervention: Post-intervention questionnaire	Parents/carers found the intervention beneficial and would recommend the intervention to other parents. They also felt more confident in meeting the needs of their children. Key themes parents alluded to included knowledge about autism, learning communication and behaviour	The study provided a good description of parent’s perceptions of the EarlyBird Plus programme. Study made use of only a post-intervention evaluation and did not make use of any pre-intervention evaluation and did not use any objective measures to evaluate change	Y	N	N	AC, D
Qualitative studies
Percentages							14/18–78	9/18–50	5/18–28

N: not part of the study; Y: part of the study, commented on in some manner (not necessarily part of the study); Ac: acceptability; D: demand; Im: implementation; P: practicality; Ad: adaption; In: integration; Ex: expansion; ET: limited efficacy testing; RCT: randomised controlled trial; N/A: not applicable.

The results presented in Table 2 suggest that of the 18 articles included in the review, 4 (22%) made use of a quantitative research design (non-randomised control design = 3; quasi-experimental = 1) and an additional 3 (17%) were factual descriptions of the EB and EBP programmes without any data. Five studies (28%) were qualitative in nature (semi-structured interviews = 2; perceptions using post-evaluation forms = 2; reflections and descriptions = 1), an additional six studies (33%) made use of mixed-method research designs (combination of post-evaluation and outcomes measure data used = 6). There was no explicit mention of the data analysis technique employed in qualitative studies, with the exception of one mixed-method study (Birkin et al., 2008) that used content analysis.

In all, 11 studies aimed to evaluate the efficacy of the EB and EBP parenting programmes. The chronological evaluation of study designs (see Figure 2) used in EB and EBP programmes suggested that studies started off being largely observational in nature (more descriptive), then shifted towards more experimental studies, typically non-randomised controlled trials (RCTs). Hardy (1999) performed the first study using an experimental design when evaluating EB research. No RCTs have been published to date and no studies to date evaluated programmes implemented in low-resource settings, such as in low- or middle-income countries, or in any non-English speaking countries.

Figure 2.

EarlyBird study design flow chart.

Outcome measures used

Six of the descriptive studies in the review made use of parental perceptions of the programmes as an outcome measure using the EB and EBP programme feedback questionnaires, as shown in Table 2 (Montgomery et al., 2012; Clubb, 2012; Cutress and Muncer, 2014; Halpin et al., 2011; Peters and Scott-Roberts, 2014; Whitaker, 2002), while four made use of non-randomised controlled designs and included parental stress using the parental stress index (Anderson et al., 2006; Engwall and MacPherson, 2003; Hardy, 1999; Shields and Simpson, 2004) and/or adaptive behaviour using the Vineland Adaptive Behaviour Scale (Hardy, 1999; McCauley, 2010; Shields and Simpson, 2004). One study used the family well-being checklist, designed to assess how families receiving early intervention change in their ability to participate in family activities (Murray, 2011).

Parent and child changes

Of the 18 studies (78%, see Table 2), 14 studies reported on parental perceptions about the programmes. Of the 18 articles (50%), 9 reported on parental changes using pre–post questionnaire data). Most studies reported an increase in parental knowledge about ASD (n = 8; 44%) as being one of the most common changes, followed by increased confidence in parenting their child with ASD (n = 5; 28%) and decrease in parental stress (n = 4; 22%).

Of the 18 articles (28%), 5 reported changes in children using pre–post questionnaire data (Hardy, 1999; Morris, 2002; Peters and Scott-Roberts, 2014; Shields and Simpson, 2004; Whitaker, 2002). The changes highlighted included improved communication and behaviour in children after their parents participated in the EB/EBP programmes (n = 5; 28%). The reported changes were observed across the different study designs and quantitative or qualitative methodology used.

Strengths and weaknesses of the studies

The data extraction in the review highlighted a number of strengths and weaknesses in the studies on the EB and EBP parenting programmes. One of the main strengths of the studies was the comprehensive descriptions of the EB and EBP parenting programmes as seen in three of the studies (Shields, 1999, 2000; Stevens and Shields, 2013), where studies described the EB programmes, their key components, session structure and outcome measures used. Hardy’s (1999) study was one of the few that examined the efficacy of the interventions as well as changes in the perceived functioning of the child, including such measures as the Childhood Autism Rating Scale, the Receptive-Expressive Emergent Language scale and the Vineland Adaptive Behaviour Scale (Bzoch et al., 2003; Ozonoff et al., 2005; Sparrow et al., 1984). The parenting programmes were implemented and evaluated among ethnic minority groups (Maori, Pasifika and Korean) in one New Zealand study but this was the only investigation of EB/EBP in potentially lower-resourced families. Research by Birkin et al. (2008) highlighted the use of the intervention among groups outside of the United Kingdom and barriers to access for such groups. Clubb’s (2012) study shed light on what EB trainers considered to be effective in the interventions using a qualitative methodology. A clearer understanding of autism and the benefits of working in multi-professional teams were considered as being effective in the interventions.

A number of limitations or weaknesses were highlighted. These included the use of only post-intervention evaluations in two of the studies (Cutress and Muncer, 2014; Whitaker, 2002). In addition, there was a large reliance on the use of qualitative data from the EB evaluation form to determine the efficacy or perceptions of the intervention in eight of the studies (Montgomery et al., 2012; Cutress and Muncer, 2014; Engwall and MacPherson, 2003; Hardy, 1999; Morris, 2002; Peters and Scott-Roberts, 2014; Stevens and Shields, 2013; Whitaker, 2002). One of the studies in the review made use of a condensed version of the EB programme and, when compared with the normal EB intervention, no differences were found in the findings between the two intervention groups (Anderson et al., 2006). Unfortunately, the condensed version of the programme was not described in detail making it difficult to draw conclusions. One of the studies that made use of both the EB and the EBP parenting programmes did not present the results separately regarding efficacy between the two interventions which might have indicated differences for the EB and EBP programmes (Murray, 2011). Overall, the study samples were small (ranging from 3 to 136 participants) and the studies were largely non-randomised controlled in design. Evidence-based medicine guidance indicates that the overall level of evidence could be rated, according to the widely used in evidence-based practice National Comprehensive Cancer Network (NCCN) guidelines, as level 2B. This is reported to be a lower level of evidence (e.g. no RCTs) but with uniform consensus and no major disagreement (Poonacha and Go, 2011).

Feasibility

Apart from efficacy, we were particularly interested in feasibility of the EB/EBP programmes. Table 2 indicates all articles that commented on any aspects of feasibility as described by Bowen et al. (2009). Acceptability was formally examined in 11/18 (61%) of the articles and broadly referenced in an additional 6 articles. All of the research that measured this area indicated that parents found the programmes acceptable. Limited efficacy testing was performed using outcome measures in 13/18 articles (72%) (the results of those are reflected previously in the parent and child changes subheading). No formal or measured evaluation of other aspects of feasibility was identified. Some comments were made about practicability in 11/18 (61%), on integration in 11/18 (61%), programme adaption in 10/18 (56%), implementation in 7/18 (39%), expansion by 7/18 (39%) and demand in 5/18 (28%). These comments on the different areas of feasibility covered a broad range of topics making concise summary of them difficult. In general, they reflected on some of the challenges and solutions relating to practicality, integration and implementation as well as demand for the programme. They also reported on suggestions for programme adaptation and expansion by both parents and professionals.

Discussion

Given the importance of PET, and the wide-scale implementation of the EB/EBP programmes, this study sets out to perform a comprehensive scoping review of all peer-reviewed literature on these programmes in order to establish the current evidence base for these PET programmes and to identify key research and implementation gaps.

The study identified only 18 peer-reviewed and grey literature publications on the programmes. All came from two English-speaking countries (United Kingdom and New Zealand). The majority of studies were descriptive or non-RCTs and no RCTs of EB/EBP were identified. The majority of studies evaluated acceptability to parents and/or performed limited efficacy testing. Far fewer studies evaluated other aspects of feasibility, such as demand, expansion and implementation. A handful of studies used standardised measures outside the EB/EBP-specific outcome measures and most focused on parental outcome. Taken together, the current level of evidence for EB/EBP based on this review provides lower level but consensus support for the efficacy of the programmes. This would equate to a 2B level of evidence to grade the strength of the evidence (NCCN Clinical Guidelines).

On the one hand, the findings presented here clearly suggest the need for RCTs of EB/EBP to improve the level of evidence for the efficacy of this PET. On the other hand, there is, at present, no consensus evaluation framework for such programmes in ASD. For example, a range of outcome measures have been used to date and there is no agreement whether outcomes of PET should only be measured in parents or also in their children. Apart from selection of outcome measures, some authors such as Hardy (1999) suggested the need for longer-term follow-up of training and commented on the potential to use video recordings (routinely collected in EB/EBP) as an objective data source to quantify parent–child interactions.

In addition to the challenges of finding suitable outcome measures and time frames for outcomes, RCTs are methodologically complex, time-consuming and resource-intensive. Importantly, Shaw et al. (2014) commented that so-called ‘evidence-based practices’ must be applicable and adaptable to real-world settings and be able to take into account cultural and psychosocial context. To do this, research must broaden its evidence base beyond evaluation of efficacy to include issues of context, acceptability, cultural appropriateness and accessibility in the development and implementation of interventions (Shaw et al., 2014). Such a broad implementation science approach will clearly require mixed-method approaches and a broad multi-source evaluation framework.

Progress on how best to assess feasibility, particularly in mental health services in HIC has improved (Brooke-Sumner et al., 2016), for example, the SAFE (Structured Assessment of FEasibility) guidelines is a measure designed to assess the feasibility of implementing a complex intervention within mental health services in the NHS (Bird et al., 2014). Such standardised guidelines are developed for well-resourced and HIC settings and are rarely employed in low-resource or low- and middle-income country (LMIC) settings. Given the clear need, and in keeping with the principles of distributive justice, future research may focus on complex interventions like EB in LMIC and could benefit from the use of already established guidelines like SAFE and the Medical Research Councils guidance for developing and evaluating complex interventions (Craig et al., 2008).

One limitation of the study is the subjectivity of the data abstraction process which might have arisen. Efforts were made to reach consensus between the two independent reviewers and consultation with the senior author reduced the potential for reporting bias.

Conclusion

The EB and EBP programmes are widely used as a first-line psychoeducation programme for parents of children who have been diagnosed with ASD. Despite the broad implementation, this review identified only lower level strength of evidence for the efficacy of the programmes, and most evidence came from HICs. We recommend that RCTs should be considered to establish a higher level of evidence, and advise further research on EB/EBP, particularly in LMICs. Apart from limited efficacy testing, relatively little implementation science research has been done on EB/EBP to determine the feasibility of such programmes in the real world. Examination of broader construct of feasibility, covering integration, implementation, demand, accessibility, adaptation and expansion, alongside efficacy testing, could be invaluable.

Supplemental Material

AUT760295_Lay_Abstract – Supplemental material for Scoping the evidence for EarlyBird and EarlyBird Plus, two United Kingdom-developed parent education training programmes for autism spectrum disorder

Supplemental material, AUT760295_Lay_Abstract for Scoping the evidence for EarlyBird and EarlyBird Plus, two United Kingdom-developed parent education training programmes for autism spectrum disorder by John-Joe Dawson-Squibb, Eugene Lee Davids and Petrus J de Vries in Autism

Footnotes

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The work was funded by the National Research Foundation of South Africa, and the Emerging Researcher Programme and Struengmann Fund at the University of Cape Town.

ORCID iD

Eugene Lee Davids

References

American Psychiatric Association (APA) (2013) Diagnostic and Statistical Manual of Mental Disorder. 5th ed. Washington, DC: APA.

Anderson

Birkin

Seymour

et al . (2006) EarlyBird Evaluation: Final Report. Wellington, New Zealand: Ministry of Education (New Zealand).

Arksey

O’Malley

(2005) Scoping studies: towards a methodological framework. International Journal of Social Research Methodology 8(1): 19–32.

Armstrong

Hall

Doyle

et al . (2011) Cochrane update. ‘Scoping the scope’ of a Cochrane review. Journal of Public Health 33(1): 147–150.

Baxter

Brugha

Erskine

et al . (2015) The epidemiology and global burden of autism spectrum disorders. Psychological Medicine 45(3): 601–613.

Bearss

Johnson

Smith

et al . (2015) Effect of parent training vs parent education on behavioral problems in children with autism spectrum disorder: a randomized clinical trial. Journal of American Medical Association 313(15): 1524–1533.

Bird

Le Boutillier

Leamy

et al . (2014) Evaluating the feasibility of complex interventions in mental health services: standardised measure and reporting guidelines. British Journal of Psychiatry 204: 316–321.

Birkin

Anderson

Seymour

et al . (2008) A parent-focused early intervention program for autism: who gets access? Journal of Intellectual & Developmental Disability 33(2): 108–116.

Blumberg

Bramlett

Kogan

et al . (2013) Changes in prevalence of parent-reported autism spectrum disorder in school-aged U.S. Children: 2007 To 2011-2012. National Health Statistics report no. 65, pp.1–11. Available at: https://iacc.hhs.gov/meetings/iacc-meetings/2013/full-committee-meeting/april9/slides_blumberg_kogan_40913.pdf

10.

Bowen

Kreuter

Spring

et al . (2009) How we design feasibility studies. American Journal of Preventive Medicine 36: 452–457.

11.

Brooke-Sumner

Lund

Petersen

(2016) Bridging the gap: investigating challenges and way forward for intersectoral provision of psychosocial rehabilitation in South Africa. International Journal of Mental Health Systems 10: 21.

12.

Brookman-Frazee

Stahmer

Baker-Ericzen

et al . (2006) Parenting interventions for children with autism spectrum and disruptive disorders: opportunities for cross-fertilization. Clinical Child and Family Psychology Review 9: 181–200.

13.

Bzoch

League

Brown

(2003) Receptive-Expressive Emergent Language Test: Examiner’s Manual. Austin, TX: Pro-Ed.

14.

Charlop-Christy

Carpenter

(2000) Modified incidental teaching sessions: a procedure for parents to increase spontaneous speech in their children with autism. Journal of Positive Behavioural Interventions 2: 98–112.

15.

Christensen

Baio

Braun

et al . (2016) Prevalence and characteristics of autism spectrum disorder among children aged 8 years – autism and developmental disabilities monitoring network, 11 sites, United States, 2012. MMWR Surveillance Summaries 65(3): 1–23.

16.

Clubb

(2012) An evaluation of EarlyBird and EarlyBird Plus over seven years: the benefits of parents and school staff being trained together. Good Autism Practice 13(1): 69–77.

17.

Craig

Dieppe

Macintyre

et al . (2008) Developing and evaluating complex interventions: the new Medical Research Council guidance. British Medical Journal 337: a1655.

18.

Cutress

Muncer

(2014) Parents’ view of the National Autistic Society’s EarlyBird Plus Programme. Autism 18(6): 651–657.

19.

de Vries

P J

(2016) Thinking globally to meet local needs: autism spectrum disorders in Africa and other low-resource environments. Current Opinion in Neurology 29(2): 130–136.

20.

Engwall

MacPherson

(2003) An evaluation of the NAS EarlyBird Programme. Good Autism Practice 4(1): 13–19

21.

Farmer

Reupert

(2013) Understanding autism and understanding my child with autism: an evaluation of a group parent education program in rural Australia. Australian Journal of Rural Health 21(1): 20–27.

22.

Grindle

Kovshoff

Hastings

et al . (2009) Parents’ experiences of home-based applied behavior analysis programs for young children with Autism. Journal of Autism and Developmental Disorders 39: 42–56.

23.

Halpin

Pitt

Dodd

(2011) EarlyBird in South Staffordshire: reflections on an innovative model of interagency working to deliver an intervention for families of preschool children with autistic spectrum disorder. British Journal of Special Education 38(1): 4–8.

24.

Hamilton

(2008) Facing Autism: Giving Parents Reasons for Hope and Guidance for Help. New York: Random House, Digital, Inc.

25.

Hardy

(1999) An evaluation of the National Autistic Society’s EarlyBird programme: Early intervention in autism through partnership with parents. Unpublished Thesis, Teesside University, Middlesbrough.

26.

Koegel

Bimbela

Schreibman

(1996) Collateral effects of parent training on family interactions. Journal of Autism and Developmental Disorders 26: 347–359.

27.

Lauritsen

(2013) Autism spectrum disorders. European Child & Adolescent Psychiatry 22(1): S37–S42.

28.

McCauley

(2010) An exploration of individual patterns of development of six pre-school children who have recently received a diagnosis of autism and the response of their parents in differing experiences of early support and intervention. Doctoral Thesis. Institute of Education, University of London.

29.

McConachie

Diggle

(2007) Parent implemented early intervention for young children with autism spectrum disorder: a systematic review. Journal of Evaluation in Clinical Practice 13(1): 120–129.

30.

Montgomery

McConkey

McHugh

(2012) Camden Mosaic Earlybird evaluation report - Autumn 2012. Available at: http://www.cnwl.nhs.uk/service/camden-mosaic/ (accessed 12 September 2017).

31.

Morris

(2002) An examination of the National Autistic Society’s Earlybird programme for parents of children with autistic spectrum disorders. In: Jones

(Ed.) Autism, Early Intervention. Kidderminster, UK: British Institute of Learning Disabilities, 40–53.

32.

Murray

(2011) The impact of the Earlybird/Earlybird Plus training programme on the parent-child relationship and family well-being. Doctoral Thesis. University of Southampton.

33.

National Collaborating Centre for Woman’s and Children’s Health (2011) Autism recognition, referral and diagnosis of children and young people on the autism spectrum. NICE guidelines, no. 128, September. London: RCOG Press.

34.

O’Flaherty

Phillips

(2015) The use of flipped classrooms in higher education: a scoping review. Internet and Higher Education 25: 85–95.

35.

Ozonoff

Boodlin-Jones

Solomon

(2005) Evidence-based assessment of autism spectrum disorders in children and adolescents. Journal of Clinical Child and Adolescent Psychology 34: 523–540.

36.

Peters

Scott-Roberts

(2014) The EarlyBird Plus programme: how do learning support assistants benefit from this? Good Autism Practice 15(1): 62–69.

37.

Poonacha

(2011) Level of scientific evidence underlying recommendations arising from the National Comprehensive Cancer Network clinical practice guidelines. Journal of Clinical Oncology 29(2): 186–191.

38.

Remington

Hastings

Kovshoff

et al . (2007) Early intensive behavioral intervention: outcomes for children with autism and their parents after two years. American Journal on Mental Retardation 112(6): 418–438.

39.

Schreibman

Dawson

Stahmer

et al . (2015) Naturalistic developmental behavioral interventions: empirically validated treatments for autism spectrum disorder. Journal of Autism and Developmental Disorders 45(8): 2411–2428.

40.

Schultz

Schmidt

Sticher

(2011) A review of parent education programs for parents of children with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities 26(2): 96–104.

41.

Shaw

Larkin

Flowers

(2014) Expanding the evidence within evidence-based healthcare: thinking about the context, acceptability and feasibility of interventions. Evidence-Based Medicine 19: 201–203.

42.

Shields

(2000) The NAS EarlyBird programme: autism-specific early intervention for parents. Professional Care of Mother and Child 10(2): 53–54.

43.

Shields

(2001) The NAS EarlyBird programme: partnership with parents in early intervention. The National Autistic Society. Autism 5(1): 49–56.

44.

Shields

Simpson

(2004) The NAS Early Bird programme: preschool support for parents of children with autistic spectrum disorder. Good Autism Practice 52: 49–60.

45.

Solomon

Necheles

Ferch

et al . (2007) Pilot study of a parent training program for young children with autism: the PLAY project home consultation program. Autism 11: 205–211.

46.

Sparrow

Balla

Cicchetti

(1984) Vineland Adaptive Behavior Scales. Circle Pines, MN: American Guidance Service.

47.

Stevens

Shields

(2013) Does attending an NAS EarlyBird or EarlyBird Plus programme make a difference? Good Autism Practice 14(2): 82–89.

48.

Tonge

Brereton

Kiomall

et al . (2014) A randomised group comparison controlled trial of ‘preschoolers with autism’: a parent education and skills training intervention for young children with autistic disorder. Autism 18(2): 166–177.

49.

Whitaker

(2002) Supporting families of preschool children with autism: what parents want and what helps. Autism 6: 411–426.

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