what are the barriers and facilitative factors that affect ... · assessment, 2003, pg 43)....

What are the Barriers and Facilitative Factors that affect

Parent/Carer Attendance at a Group-Based Interventions

following a Complex Communication (Autism)

Assessment?

Kathryn Palmer

Commissioned by Dr Jason Miller, Clinical Psychologist

Child Development Centre

Leeds Community Healthcare NHS Trust

Service Evaluation Project: How can we make it easier for parents to attend courses?

Prepared on the Leeds D.Clin.Psychol. Programme, 2017 2

Table of contents

Title page............................................................................................................................ 1Table of contents ............................................................................................................... 2

Introduction................................................................................................................... 3Aims................................................................................................................................ 5Method ........................................................................................................................... 6

Design ......................................................................................................................... 6Measures ..................................................................................................................... 6Participants and procedure.......................................................................................... 6Inclusion criteria. ........................................................................................................ 6Exclusion criteria. ....................................................................................................... 6Recruitment................................................................................................................. 7Special arrangements. ................................................................................................. 7Data analysis ............................................................................................................... 9Ethical considerations ................................................................................................. 9

Results .......................................................................................................................... 10Parent/carer characteristics ....................................................................................... 10Evaluation of Pathfinders ......................................................................................... 12Qualitative themes .................................................................................................... 13

Discussion..................................................................................................................... 20Recommendations ....................................................................................................... 22

References ........................................................................................................................ 24Appendices....................................................................................................................... 26



Introduction

Receiving a diagnosis of autism spectrum condition (ASC) for your child can be a difficult

and stressful time and lead to lower confidence in parenting ability, social isolation

(Woodgate, Ateah, & Secco, 2008) and parental psychological distress (Crane, Chester,

Goddard, Henry, & Hill, 2016; Davis & Carter, 2008; Osborne, McHugh, Saunders &

Reed, 2008; Weiss, 2002). Therefore, it is crucial that families receive post-diagnostic

support. The National Autism Society advocates for parents/carers of pre-school children

with ASC to be offered a group training intervention with the aim of helping families to

“understand and communicate for successfully with their child, and enhance parental and

family self-esteem and their ability to cope” (National Initiative for Autism: Screening and

Assessment, 2003, pg 43). Research based on the National Autism Society’s EarlyBird

programme (a parent-focused parenting course for under-5s with autism), suggests that not

only are group parenting interventions cost-effective (Engwall & MacPherson, 2003), but

they are also successful in upskilling parents in autism-specific parenting techniques

(Stevens & Shields, 2013). Research into an alternative course showed that the group

format is beneficial, as receiving understanding and support from fellow parents improves

parental knowledge and empowerment (Banach, Iudice, Conway & Couse, 2010)

However, no matter how effective an intervention is in theory, it is practically useless if

parents are not attending the group. This is a concern of the staff team at the Leeds Child

Development Centre; the local centre for autism diagnosis for under-5s in Leeds. In the

current climate of austerity, the primary support mechanism for families following an

autism diagnosis a seven-week parenting course called Pathfinders, modelled on the

EarlyBird programme. Each session uses psycho-education, group tasks and discussion to

facilitate the learning and implementation of evidence-based parenting techniques. After

concerns over parental attendance were noted by the team, Dr Jason Miller, Clinical

Psychologist, commissioned this service evaluation project (SEP) to investigate what

barriers might prevent parental attendance, and what factors might help facilitate

attendance at Pathfinders.



These concerns have been shared by previous researchers. In New Zealand, Birkin,

Anderson, Seymour and Moore (2008) used prevalence and uptake data to show a

startling 85% of eligible parents did not attend the nationally available and government

funded EarlyBird programme. Statistical analysis showed that membership of a minority-

ethic group and length of weight for a course were significantly associated with non-

participation in EarlyBird. Unfortunately, there is no equivalent published attendance

data for the UK so the extent of non-attendance cannot be compared. Further to this, the

researchers held selective interviews with members of the minority-ethic communities

which revealed 4 main factors affecting attendance: family factors (i.e., those factors that

are intrinsic to the family group), clinical relevance (i.e., the degree to which a family

perceives the need to engage in an intervention), cultural relevance (i.e., the degree to

which the culture of the intervention is relevant to the culture of the family), and

accessibility (i.e., the degree to which practical barriers may impact on attendance).

A systematic review conducted by Mytton, Ingram, Manns and Thomas (2013) reviewed

15 studies of parent/carer perspectives and nine studies of facilitator perspectives of

studies that asked why parents did not attend, or dropped out from, a parenting course.

This thorough study identified six themes which would facilitate attendance, and five

themes which were barriers to attendance. To facilitate attendance the following factors

were highlighted - a) the group promotes the social learning of new skills, b) a trusted

person recruits parents, and the facilitator is non-judgemental and empathetic, c) the

group environment feels safe, supportive and facilitates the free exchange of ideas, d) the

content of the course is focused and specific to group members, e) the course is held on a

convenient time and day, in an accessible location and consideration is made for

childcare, and finally f) incentives are given for attendance including vouchers, free

meals or travel expenses. The five barriers to attendance were described as: a) lack of

belief that parenting strategies can alter their child’s behaviour, b) dislike of the

programme format including didactic nature, lack of confidence in the facilitator, or

cultural differences, c) participant factors such as other time commitments, dislike of

group programmes, availability of childcare, timing/frequency of sessions and stigma, d)

courses where children’s problems varied so much that there was no focus and the



sessions became too complex and finally e) social and cultural barriers such as

language/literacy barriers, different approaches to parenting, poor family support and

chaotic lifestyles. However, whilst these themes form a robust starting point for

examining attendance to the Leeds CDC Pathfinders course, they must be considered

with caution as they applied to parenting courses for all age-groups and were not ASC-

specific.

Birkin et al. (2008) argued that, ethically, the course providers should be actively

working to reduce potential barriers to attendance at groups, and the onus of

responsibility should not be placed with families .With this in mind, this SEP seeks

parental opinions on the barriers and facilitators to attending the Pathfinders group, with

the view to making service-led changes to improve and maintain attendance to ensure as

many parents and children as are eligible receive this specialist support and advice.

Aims

The aims of this SEP were to understand barriers and facilitators to attendance at the

Pathfinders course from the perspective of

a) parent/carers who have attended the course

b) parents/carers who are on the waiting list to attend a course

In order to:

Increase the accessibility of the Pathfinders course

Increase and maintain consistent attendance at courses by tailoring its format to

parent/carer feedback



Method

Design

Semi-structured, mixed-methods, telephone interviews were used. Each interview was

designed to take less than 20 minutes to complete, and telephone surveys were chosen to

minimize the demands on participants who were caring for at least one young child

with ASC. Two surveys were created – one for parent/carers who had attended a course,

and one for parent/carers who remained on the waiting list for the course (Appendix 2).

Postal surveys were considered but ruled out due to the small participant pool and low

return rate for postal surveys. Face-to-face surveys were also considered but would have

created additional demands for the parent/carer and investigator which made this

impractical.

Measures

There were no pre-existing standardized or validated measures to meet the aims of this

project. The surveys were developed in conjunction with the project commissioner and the

investigator’s academic tutor. A previous SEP (Gormley, 2013) that evaluated a similar

setting (a parent education class) was also used as a basis for the survey. Two clinical

psychologists within the CDC were consulted for feedback and comments on the draft

surveys. The surveys were piloted in role-play by two peer trainee psychologists to ensure

clarity and usability. The surveys consist of a combination of 5-point Likert scales, fixed-

choice questions, and frequent opportunities to give additional qualitative feedback.

Participants and procedure

Inclusion criteria.

Attended the Pathfinders course from June 2016 to July 2017; or on the waiting list

for a Pathfinders course in July 2017

ASC diagnosis was made by the commissioner and/or the Pathfinders course

attended was led by the commissioner. This was to ensure the participants were known

to the commissioner before they were recruited into the project, limiting the participants

to two localities (South and West) and excluded parents in the East locality.

Exclusion criteria.

Insufficient understanding of English to complete telephone survey (due to

insufficient funds for interpreters)



Complex family situation e.g. high levels of distress around diagnosis, involvement

from children’s safeguarding services. This was determined by Dr Jason Miller, who

knew each family from their contact with services.

Recruitment

The CDC administrator provided contact details for eligible participants. The

commissioner recruited an opportunity sample of parents by telephone for a total of six

hours, spread across three two-hour sessions. Parents who responded to telephone contact

within these sessions were given an explanation about the project and asked for initial

consent to receive further information by post and a telephone appointment with the

investigator for two-weeks later. The two-week delay allowed parents time to read the

participant information sheet, consider if they wished to proceed to take part in the survey

and have time to approach either the investigator or commissioner with any questions or

concerns. Parents who did not respond to this initial phone call were not contacted further.

Data collection

The investigator telephoned the parent at the agreed time, answered any questions and

obtained informed consent over the phone to partake in the survey. If the parent did not

answer the phone at this point, the parent was contacted again the following week, and

excluded from the study if no contact was made. The survey was completed within the

phone appointment with the investigator, or if more convenient, a further appointment was

arranged. After completion of the survey, the participant was given chance to ask any final

questions of the investigator and thanked for their time. The recruitment and data

collection processes are summarised in figure 1.

Special arrangements. To ensure equality of inclusion in this study, the following

additional arrangements were available if necessary:

Parents/carers could be offered face-to-face surveys, at home or in their local CDC

Parents/carers could be offered a paper copy of the questions in advance (in large

print if necessary)

However, no parents/carers used these additional supports to take part.



a)

b)

Figure 1. Participant flow through the project for a) parents who attended Pathfinders and b)parents on the waiting list.



Data analysis

Responses were transcribed by hand during the telephone call. Responses to closed

questions were analysed using descriptive frequency data. Responses to open questions

were analysed using content analysis (Braun & Clark, 2006). The transcripts were read by

the investigator until they felt familiar with the text. Then the investigator worked

systematically through the text, assigning brief descriptive codes to meaningful content

with a focus on identifying any barriers or facilitators to attendance, in line with the SEP

aims. These codes were then grouped together with other codes of similar meaning to create

themes, and refined by discussion with the commissioner, University academic tutor and

by returning to the original transcripts. The final themes were discussed with the

commissioner to ensure face validity, and frequency of each theme was recorded. Although

Pathfinders courses ran at two different localities (South and West), due to the small

numbers of participants it was agreed that splitting the data to reveal differences between

venues was not appropriate.

Ethical considerations

Ethical approval was granted by Faculty of Medicine, University of Leeds on 26/05/17

(MREC16-090). The project was registered with Leeds Community Healthcare NHS Trust.

All data was anonymised and stored on encrypted University of Leeds servers.



Results

Parent/carer characteristics

In total, 16 people participated in this study and all were primary caregiver (14 mothers

and 2 fathers). Ten parents who had attended the course participated (9 mothers and 1

father) and 6 parents from the waiting list group (5 mothers and 1 father). Table 1 tabulates

the characteristics of each group. The wait for a course ranged between 4 weeks and 8

months.

Table 2 shows parents ratings of three factors affecting motivation to attend Pathfinders.

Both groups rated their priority to attend equally, however the attended group rated their

understanding of what Pathfinders was before attending the group as higher than the

waiting list group. Generally, group courses were acceptable to the parents, but the waiting

list group reported a greater preference for attending group courses.



Table 1. Characteristics of parents of children supported by the CDC.*Working status of parent completing survey; 14 parents said their partner worked full orpart time.

Table 2. Ratings of factors influencing attendance at Pathfinders

Priority of attendance at PathfindersNot a priority1 2 3 4

High priority5

Meanscore

Attended (n=10) 0 0 1 3 7 4.6Waiting list (n=6) 0 0 0 2 4 4.7Total (n=16) 0 0 1 5 11 4.7

Understanding of Pathfinders prior to attendanceDid notunderstand1 2 3 4

Completelyunderstand5

Meanscore

Attended (n=10) 0 3 1 2 4 3.7Waiting list (n=6) 1 0 3 2 0 3Total (n=16) 1 3 4 4 4 3.4

Enjoyment of group coursesDo not enjoy atall1 2 3 4

High enjoyment5

Meanscore

Attended (n=10) 1 2 3 3 1 3.1Waiting list (n=6) 0 1 1 3 1 3.7Total (n=16) 1 3 4 6 2 3.4

Travel method to clinic Working status* English as first language

Car Bus Taxi WalkNotworking

Parttime

Fulltime Yes No

Attended (n=10) 6 2 1 1 7 2 1 7 3Waiting List(n=6) 5 1 0 0 3 2 1 5 1

Total (n=16) 11 3 1 1 10 4 2 12 4

Travel time to clinic (minutes) Disability Location0-15 15-30 30-45 45+ Yes No South West

Attended (n=10) 4 4 1 1 1 9 5 5Waiting List(n=6) 2 2 2 0 1 5 1 5

Total (n=16) 6 6 3 1 2 14 6 10



Evaluation of Pathfinders

Parents who had attended the Pathfinders group were asked to provide satisfaction ratings

for elements of the course (n=10). Satisfaction of elements of Pathfinders and a tally of the

scores is given alongside the average rating in Table 3. All the average scores were 3.5 or

higher suggesting that all elements of the course were acceptable to parents. The lowest

scores were for the day and time of the course. Seven parents attended the first course they

were offered, and the remaining three parents declined the first course and took the second

course. All three parents who opted into the second course said they needed to decline the

first course offered due to the time or day being inconvenient.

Table 3. Satisfaction ratings for elements of the Pathfinders course.

Preferences for Pathfinders

All parents were asked to outline their ideal course arrangements. Most parents (n=14) said

that the ideal time would coincide with regular childcare arrangements. Only

two parents said they had the flexibility to attend at any time. Thirteen parents preferred a

weekday course, 2 parents would consider attending an evening course, and 1 a weekend

course. All parents (n=16) said they had no preference to attend an NHS location over a

non-NHS location, however 8 parents criticised the lack of parking at the West locality.

Accessibility was the most frequently mentioned factor, with all parents (n=16) requesting

either free onsite parking or that the venue be placed on a major bus route. All parents said

they would appreciate handouts and refreshments, but none said this was mandatory to

facilitate the attendance.

n=10 1 - Poor 2- Unsatisfactory 3 - OK 4 - Good 5 -Excellent Mean score

The booking process 0 1 0 3 6 4.4

The location 0 2 2 1 5 3.9

The room itself 0 1 1 5 3 4.0

Day 0 2 2 5 1 3.5

Time 0 2 3 3 2 3.5

Length 0 0 5 1 4 3.9

Facilities (e.g. refreshments, handouts) 0 0 0 5 5 4.5



Qualitative themes

Data analysis focused on identifying barriers and facilitators to attendance. Therefore, the

qualitative themes are summarised into two main sections – barriers to attendance and

facilitators to attendance. Each section (i.e. barriers or facilitators) has been divided into a

number of major themes denoted by a number, within which may be described a number

of more detailed minor themes, denoted by a letter. All themes are briefly summarised and

illustrated with verbatim quotations, and frequency of theme is given. A map of the major

and minor themes for each section is given in Table 4. In the final section, suggestions for

improvement generated by participants have also been summarised.

Table 4. A summary of all major and minor themes for the two main areas of study: barriersand facilitators to attendance.

Barriers to attendance Facilitators to attendanceMajor themes Minor themes Major themes Minor themes

1. Everyday barriers 1a. Work 1. Interest andwillingness tolearn

N/A1b. Childcare1c. Other issues

2. A difficult wait 2a. What isPathfindersanyway?

2. A supported wait 2a. Knowing whatis coming and when

2b. Anxious andabandoned

2b. Timely access

2c. Findingalternative support

3. Dissatisfactionwith the course

3a. Accessibility 3. A meeting ofminds

3a. Expertknowledge

3b. It’s nothing new 3b. Sharedexperience

3c. Dislike of groupformat

3c. Emotionallysupportiveatmosphere

Barriers to attendance

Barriers were grouped into three major themes: everyday barriers, experiencing a difficult

waiting period, and dissatisfaction with the course itself.



Major theme one: Everyday barriers

All parents interviewed described barriers in their day-to-day family life that make

organisation of any additional activity difficult. These factors help give some context to

what life is like for families who have a young child with ASC. Within this were three

minor themes – work, childcare and other responsibilities.

Minor theme 1a: Work: n=6 (3 attended, 3 waiting list). For families where one

or both parents are working, arranging time out of work to attend Pathfinders was a

significant barrier. Whilst some parents said their “employer was understanding and

helped make it work,” other parents stated that “it wouldn’t look good” for them to take

the time out. Even where one parent was not working, the second parent was often covering

the childcare whilst the other attended the course.

Minor theme 1b: Childcare: n=12 (9 attended, 3 waiting list). Many parents

stated that if the course fitted within nursery hours they would be happy to attend, but

difficulties sourcing and funding additional hours and ensuring they had time to cover pick-

up and drop-off times put significant constraints on their ability to attend. Some parents

relied solely on the availability of family, or conversely, solely on their nursery. For

example, one participant explained “we have no family in this country, so outside of the

nursery, it is just the two of us, so [partner] stayed at home with the kids.” Furthermore,

several parents stated that their child with autism had specialist needs that further

complicated the arrangement of childcare including: dislike of routine changes,

challenging behaviours, or a limited number of people who felt equipped to care for their

child.

Minor theme 1c: Other issues: n=5 (4 attended, 1 waiting list). Other logistical

issues described included education and study such as attending a university or college

course, or other carer responsibilities such as an unwell parent. One parent mentioned that

the course had fallen over Ramadan, but had still chosen to attend the course.

Major theme two: The difficult wait

Once the ASC diagnosis has been made, parents must wait for the next available course.

For some parents, this wait was a difficult time expressed in three minor themes.



Minor theme 2a: “What is Pathfinders anyway?”: n=8 (2 attended, 6 waiting

list) Several parents expressed not knowing what they had signed up for with Pathfinders

e.g. “I knew it was a course about autism, but that was all I knew” and “The diagnosis day

was such a blur and I think we said yes to anything they offered us. At this point, I really

have no idea what we are on the waiting list for.”

Minor theme 2b: Anxious and abandoned: n=8 (3 attended, 5 waiting list). All

parents from the waiting list group expressed a sense of being “left alone” in the wait for

Pathfinders. One parent said “I know you can call if you really need something, but you’re

just left on your own to get on with it.” One parent who attended said “Waiting for help

was awful...I wouldn’t have coped alone any longer.” Many interviewees from the waiting

list group felt they had been waiting too long and said they felt “unsure” when they would

receive information about Pathfinders. Several were worried about missing their invitation.

One parent commented “I am opening every letter I get thinking ‘is this it?’” and another

“everyone has said to me ‘oh you’ll be on the [month] course’ but I thought if that were

true, I would surely have heard something by now? So I think ‘well have I missed it then?

Did I miss my chance?’”

Minor theme 2c: Finding alternative support: n=4 (1 attended, 3 waiting list).

Some parents sought out alternative forms of support, which reduced their reliance on the

course to provide intervention i.e. via the internet e.g. “I’m good at finding things out for

myself, and there is a lot online anyway” and via other organisations e.g. “Now we have

an ABA [applied behavioural analysis] tutor and we’ve picked up loads from them, so I’m

not sure what else the CDC will be able to teach us to be honest.”

Major theme three: Dissatisfaction with the course

Participants expressed dissatisfaction with elements of how the course was structured or

run.

Minor theme 3a: Accessibility: n=10 (7 attended, 3 waiting list). Parents stated

ease of journey from home, nursery or work, availability of parking spaces, and cost of

journey (bus or taxi) as factors that made them question their attendance. All comments

about poor parking were directed to the West venue and one parent felt the lack of available

parking made for “a really stressed-out atmosphere.”



Minor theme 3b: “It’s nothing new”: n=6 (5 attended, 1 waiting list). As parents

had often attended a prior course at the CDC, and had already received several

appointments with the CDC, some parents expressed they felt the CDC gave repetitive

content, or thought there was overlap between appointments or courses e.g. “I felt I had

heard it all before, it overlapped a lot with [other course]” and “I have found our

appointments repetitive and it makes me worried the course will be just the same.”

Minor theme 3c: Dislike of group format: n = 6, (4 attended, 2 waiting list).. A

minority of parents said they preferred not to attend group courses in general e.g. “They’re

not really my thing, I’d prefer to learn just us and a professional” and “I find it artificial,

the idea that we are all meant to bond over having this in common, but really we are all

different people with disparate lives. No two children with autism are the same anyway. I

don’t feel I can really make a connection.” Others said previous courses run by the CDC

had been unpleasant e.g. “I found the [other course] depressing actually. It made me lose

all hope.” Finally, four parents who had been in attendance felt the group format had not

worked well as there had been too little time to make connections with other parents e.g.

We were rushed out at the end when we really wanted to stay and talk” or “We needed

more time with the other parents…it would have been good to have the room booked longer

so we could stay and talk after the session finished.

Facilitators to attendance

Facilitative factors are grouped into three major themes: the parent’s initial motivation to

attend a course, experiencing a clear and supported wait, and experiencing the course as a

meeting of minds.

Major theme one: An interest and willingness to learn: n=6 (3 attended, 3 waiting

list)

Prior to attending the course, parents spoke about valuing educational opportunities in

general e.g. “I love learning, I usually jump at any chance to do an educational course”

and specific motivation to learn more about autism e.g. “I really want to know as much to

help my son as possible.”



Major theme two: A supported wait

Minor theme 2a. Knowing what is coming and when: n=6 (3 attended, 3 waiting

list). Parents reflected on having a clear understanding of what Pathfinders would entail

both during the wait e.g. “The health visitor explained [the waiting list] really well…we

knew older kids got courses first” and when the course began e.g. “They told us what all

the weeks were in advance which was really helpful. You could think about what you

wanted to ask or discuss with others before you got there.” One parent recounted

misunderstanding the purpose of the course (“I thought I needed to bring my daughter”)

and having it quickly clarified to ensure they understood.

Minor theme 2b. Timely access: n=3 (3 attended). Parents gave positive feedback

about the timeliness of their access to a course. One parent reflected “we were in shock at

the diagnosis and the course came quickly after which helped us cope with it all”. All three

parents had received a course less than 3 months following diagnosis.

Major theme three: A meeting of minds

Minor theme 3a. Expert knowledge: n=10 (6 attended, 4 waiting list. Parents

sought practical advice and techniques from experienced professionals at the CDC (e.g. “I

am looking forward to hearing more about educational arrangements for my child from

the STARS [specialist teaching] team”) and attendees praised the techniques taught as

“working well at home” and the course facilitators for being “knowledgeable.”

Minor theme 3b. Shared experience: n = 12 (9 attended, 3 waiting list). Whilst

meeting other parents was a barrier for some, many parents were motivated by the chance

to meet other parents in order to discuss their shared experiences e.g. “I wanted to hear

what others parents were doing, what they’d tried, what worked and didn’t work” and

highlighted that it complemented the “textbook” learning provided by professionals, as one

parent explained “every child is different and the course leaders could only give us general

information, so hearing it more specifically from other parents who have actually done it

helps.”

Minor theme 3c. Emotionally supportive atmosphere: n=9 (9 attended).

Attendees commented on the friendly and supportive atmosphere “listening to others

stories could be really hard, really emotional, but feeling emotional wasn’t a problem in



that group.” Others commented on feeling “isolated” or “alone” before attending the

course, but that they have formed and maintained relationships with other parents – “we

still meet up with the others in the group even now.”

Suggestions for improvementThe following recommendations were generated by the participants in the study.

Clearer information.

“When you go onto the waiting list, you should get a letter outlining the purpose, format

and outlines of each week. That way, you can make a better choice about whether to

attend or not”

“I would like more information up front about the content in each week.”

“Clearer directions to the venue and where to park”

Reminders

“I think you should ring people and try letters. It’s easy to miss or forget”

“Text reminders each week could be helpful

Publicity

“Advertise it with posters in the CDCs”

Use of digital/internet resources.

“It would be good to have some key information provided as video resources to watch at

home”

“Maybe an internet forum for attendees so we can discuss progress between weeks”

“Ideally the course content would be made digital, even if the handouts were just emailed

it would be a start”

Meet parents with older children.

“I would have liked to have a session with a parent whose child is older now, or an adult

now, to tell us about what can happen long term.”

More discussion based, less PowerPoint

“Reading should be set as homework which means the sessions can be kept to discussion

and problem solving”

“I am never motivated by someone reading out a PowerPoint”

Include a session where children are invited.



“We spent so long talking about them, it would be nice to actually meet them”

Provision of childcare.

“Surely if anywhere could provide childcare, it would be a CDC”

“If you provided childcare, attendance would not ever be an issue for me”



Discussion

This SEP aimed to use telephone surveys of parents who had either attended the

Pathfinders course in the past year, or were awaiting an invitation to join the course, in

order to understand barriers and facilitators to attendance. It was hoped this information

could be used to increase the accessibility of the course in order to improve attendance.

The key findings are outlined below followed by a discussion of the relationship of these

findings to the previous literature, and some of the limitations of the project.

Summary of key findings: In the cohort of parents surveyed, car was the most common method of travel,

followed by bus, and most journeys took less than 30 minutes. The majority of

families had at least one full-time working parent.

Parents were highly motivated to attend Pathfinders and the majority found a

group format acceptable, but some parents felt unclear about what Pathfinders

entailed before attending.

Attendees of Pathfinders generally rated Pathfinders highly. Parents were most

dissatisfied with the time and day of the course they attended, expressing a

preference for a course which took place during their child’s childcare provision.

Four parents felt the course did not allow for enough peer discussion.

The most frequently mentioned barriers to attendance were: arranging appropriate

childcare, finding the venue inaccessible, and, feeling unsure what Pathfinders

entailed and feeling being “abandoned” by the CDC due to lack of

communication or support during the waiting period between diagnosis and the

course beginning.

The most frequently mentioned facilitators to attendance were: the provision of

expert, tailored knowledge from CDC staff, the potential to share learning

between other parents, and receive emotional support from peers.

Relationship to previous research

The evaluation of the Pathfinders course found that overall, parents found the course

acceptable and useful, which is in line with the previous literature that suggests group-

based interventions are of benefit to parents (Banach, Iudice, Conway & Couse, 2010).



Overall, the barriers and facilitators identified in this project were broadly in-keeping

with the previous research (Birkin et al., 2008; Mytton et al., 2013), identifying a number

of family-orientated barriers, and barriers emerging from the nature of the course itself.

Birkin et al. (2008) identified length of wait as a statistically significant predictor of non-

attendance, and the qualitative element of this project provided a deeper understanding of

the psychological and emotional toll that a long wait has on parents. Birkin et al., (2008)

and Mytton et al., (2013) both identified cultural factors as barriers, however, save for

one parent who mentioned their course fell during Ramadan, this area was not mentioned

by parents.

Limitations

This SEP was only able to capture the experience of a small number of parents. Parents

could only take part if they could answer a telephone call during working hours, and

parents who did not speak fluent English or had complex family situations were not

surveyed. Finally, only families in the South and West of Leeds were approached to

ensure the commissioner only recruited families he knew well. Parents in East Leeds

were not recruited. This means there are some significant subgroups of families who did

not have the opportunity to contribute to this evaluation project – and this is likely to be a

cohort of parents who are facing more significant barriers and need additional support

with attendance. In addition, no demographic data was available at the time of the service

evaluation to compare the cohort of participants in the project with either the population

of families attending the CDC, and with the wider, local population. Therefore, the

results of this evaluation project should be interpreted cautiously, and a wider-reaching

evaluation that captures a more representative sample of participants should be

undertaken to allow a more detailed and robust analysis of barriers and facilitators for

parents in the Leeds CDC.



Recommendations

The following recommendations have been made to the CDC as a result of this project in

order to facilitate greater accessibility and attendance at Pathfinders.

Combatting the everyday barriers:

• Consider varying the time and day of courses to accommodate differing childcare

and working patterns.

• Consider occasional weekend or evening classes to accommodate working parents.

• The provision of childcare would maximise attendance.

Improving the waiting period

• Ensure parents have clear information about the aim and format of Pathfinders and

the expected wait.

• Send an update to parents during the waiting period. This could take the form of a

newsletter which provides other sources of support and information.

• Provide courses with enough regularity that the waiting time can be reduced to

under three months.

• Provide at least six weeks’ notice to allow parents time to make arrangements.

Developing the course itself

• Use of digital resources including digital or online copies of the material, or videos

that can be re-watched at home.

• Ensure the course content is non-didactic, specific and tailored, and reduces overlap

with other appointments or courses provided by the CDC.

• Consider using reminder texts ahead of sessions.

• Investigate alternative venues or parking arrangements.

• Consider inviting parents with older children with autism to share their experiences

with parents.

• Consider providing additional time for peer discussion and support. For example,

at the end of the session, a space could be booked for an additional hour for parents

who wish to stay longer. Alternatively, other social and supportive groups could be

set up outside of the Pathfinders course.

Future evaluation



If resources allow, further evaluation might take the form of selective interviews

with target groups who are underrepresented at Pathfinders (e.g. Birkin,

Anderson, Seymour & Moore, 2003) or analyse the demographic data of parents

who attended Pathfinders compared to the families attending the CDC, and the

local population.

Dissemination

The results of this SEP have been disseminated in the following ways:

Poster presentation and aural presentation at SEP conference, University of Leeds

Aural presentation at Clinical Psychology meeting, Leeds CDC

Aural presentation at Leeds CDC managers meeting

Summary document circulated to all Leeds CDC staff (Appendix 3)

The commissioner and investigator are planning to submit a shortened form of this

project for publication in a practice-based journal in Spring 2018.



References

Crane, L., Chester, J.W., Goddard, L., Henry, L. A., & Hill, E. (2016). Experiences of

autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism:

The International Journal of Research and Practice, 20(2), 153-162.

Banach, M., Iudice, J., Conway, L., & Couse, L. J. (2010). Family support and

empowerment: Post autism diagnostic support group for parents. Social Work

with Groups, 33(1), 69-83.

Birkin, C., Anderson, A., Seymour, F., & Moore, D. W. (2008). A parent-focused early

intervention programme for autism: Who gets access? Journal of Intellectual &

Developmental Disability, 33(2), 108-116.

Braun, V., & Clark, V. (2006). Using thematic analysis in psychology. Qualitative

Research in Psychology, 3(2), 77-101.

Davis N., & Carter A. (2008). Parenting stress in mothers and fathers of toddlers with

autism spectrum disorders: associations with child characteristics. Journal of

Autism and Developmental Disorders, 38, 1278–1291.

Engwall, P., & McPherson, E. (2003). An evaluation of the NAS EarlyBird program.

Good Autism Practice, 4, 13–19.

Gormley, H. (2013). What parents want from parent evenings. Service Evaluation Project

report written as part of DClin study, University of Leeds. Made available by

Dr Gary Latchford.

Osborne L., McHugh L., Saunders J., Reed P. (2008). A possible contra-indication for

early diagnosis of autistic spectrum conditions: impact on parenting stress.

Research in Autism Spectrum Disorders, 2, 707–715.

Mytton, J., Ingram, J., Manns, S. and Thomas, J. (2013) Facilitators and barriers to

engagement in parenting programmes: A qualitative systematic review. Health

Education and Behavior, 41 (2), 127- 137.

National Initiative for Autism: Screening and Assessment. (2003). National Autism Plan

for Children. Published by the National Autism Society.

Stevens, J., & Shields, J. (2013). Does attending an NAS EarlyBird or EarlyBird Plus

programme make a difference? Good Autism Practice, 14(2), 82-89.



Weiss, M. J. (2002). Hardiness and social support as predictors of stress in mothers of

typical children, children with autism, and children with mental retardation.

Autism, 6, 115130.

Woodgate, R. L., Ateah, C. and Secco, L. 2008. Living in a world of our own: The

experience of parents who have a child with autism. Qualitative Health Research,

18(8): 1074–1083.



Appendix 1

Participant information sheet

How can we make it easier for parents/carers to attend courses at the ChildDevelopment Centre?

Participant information sheet

You are being invited to give your feedback on the parent/carer trainingcourses provided by the Child Development Service for children who haveattended a Complex Communication Assessment.Before you decide if you would like to take part, you should understand why weare asking for your feedback and what it will involve. Please take some time toread through this information carefully.

Why are we asking for feedback?After children have received a Complex Communication Assessment, we inviteparents and carers to take part in a parents’ training group. However, we knowthat attending groups can be difficult for some parents and carers for a variety ofreasons. We are speaking to parents and carers, some of whom have been ableto attend a group, and others who have been unable to attend as yet and are onthe waiting list to attend a group. We would like to talk to you about what mightmake it difficult to attend a group, and what things might make it easier. We hopethat we can use this feedback to change the way we offer our groups so thatthese are easier to attend.This project is being run by Kathryn Palmer, Trainee Clinical Psychologist at theUniversity of Leeds, as part of the Doctorate in Clinical Psychology. Jason Miller,Clinical Psychologist at Child Development Centre has commissioned this projectand will be supervising the project.

Why have I been chosen to take part?You were recently contacted by Jason Miller by telephone who invited you totake part. All parents and carers who have either attended a parents’ group, orare on the waiting list for a group, have been invited to take part.

What would taking part involve?Kathryn will contact you by telephone to ask you if you’d like to take part in thestudy. We will try to do this about two weeks after you first spoke to Jason aboutit. She will arrange with you a good time to speak together. At the arranged time,Kathryn will ask you a number of questions about the parent/carer courses at theChild Development Centre, what could make them hard to attend, and whatmight make it easier to attend. This will take about 20 minutes.

Are there any negatives to taking part?Some people might find thinking about their and their family’s needs upsetting. Ifthere is a question you don’t want to answer, you can ask Kathryn to skip it



without having to give a reason. At any time during the survey, you can ask totake a break from the survey, or ask to stop taking part altogether.

What will happen to the information you collect?We follow strict rules and procedures to keep all your data secure andconfidential. Your participation and responses will be kept confidential and youwill not be identifiable at any point to staff at the Child Development Centre.Kathryn will write down your responses to the telephone survey as you speak onthe phone. The responses will be added to a computer database which will bestored on secure University of Leeds computer servers. Your personal details willnot be kept on this database. The data will be kept for three yearsthen confidentially destroyed in accordance with the Data Protection Act.However, there are some rare situations where we might need to break yourconfidentiality. This would be if you disclosed any information during thesurvey that suggests you or someone else is at risk of harm, or that a seriouscrime has occurred. If this is the case, we will need to pass the information on tothe appropriate services (e.g. your GP). We would always try to speak to youbefore doing this to explain what was happening.The information we collect in this study will be presented as part of a Doctorate inClinical Psychology at the University of Leeds. If any direct quotes are used fromthe interviews in the report, your anonymity will be preserved. A summary of thefindings will be sent to everyone who takes part at the end of the study.

Do I have to take part? What if I change my mind?You do not have to take part. It is up to you to decide whether you wish to takepart or not. Your future care will not be affected by your decision to take part ornot. Staff at the Child Development Centre will not be informed who has or hasnot taken part, and your responses will be confidential.When Kathryn contacts you in around two weeks’ time, she will ask you if youwould like to take part. If you complete the survey but afterwards decide you nolonger wish to take part, you can contact Kathryn and let her know you havechanged your mind. Kathryn will remove your data from the study and destroyany information held about you. Your future care will not be affected if you decideto stop taking part. You can withdraw from the study at any time up untilSeptember 2017 when data analysis begins. If you contact Kathryn to withdrawafter this time, she will let you know that it is no longer possible to withdraw.

Ethical approvalEthical approval for this project has been sought from the School of MedicineResearch Ethics Committee (SoMREC project number MREC-16-090) at theUniversity of Leeds. Approval was granted in May 2017.

What happens next?Kathryn will contact you by telephone to ask if you would like to take part. Weendeavour to make this phone call around two weeks after you spoke to Jason.



Where can I get further information?The best person to contact is Kathryn Palmer, by emailing [email protected] orby calling 07792208815 (Mon – Fri, 09:00 – 17:00). You can also contact JasonMiller, Clinical Psychologist, by emailing [email protected] oron 07508039151. If you leave a message, we will get back to you as soon aspossible.

How can I make a complaint?If you are unhappy about any part of this project, please contact Kathryn orJason in the first instance. If you would like to make a formal complaint, pleasecontact Clare Skinner, Faculty Head of Research Support, Faculty of Medicineand Health Research Office, Room 10.110, Level 10, Worsley Building,University of Leeds, Clarendon Road, Leeds, LS2 9NL.

You can make a formal complaint about the Child Development Service bycontacting the Patient Advice and Liaison Service (PALS) using these details:Address: PALS, 1st Floor, Stockdale House, Headingley Office Park, VictoriaRoad, Leeds, LS6 1PFTel: 0113 220 8585 (9:30-4:30, Monday – Friday, answerphone out-of-hours).Email: [email protected]

Thank you for taking the time to read this information. Please keep thisinformation sheet in case you need to contact us for any reason.We look forward to hearing from you.Best wishes,Kathryn Palmer Dr Jason MillerTrainee Clinical Psychologist Project supervisorUniversity of Leeds Clinical Psychologist

Institute of Health Sciences, Child Development CentreLevel 10, Worsley Building St Georges CentreUniversity of Leeds St Georges RoadClarendon Way MiddletonLeeds, LS2 9NL Leeds, LS10 4UZ



Appendix 2

Telephone surveys

What are the barriers and facilitative factors for parent attendance at group-basedinterventions following a Complex Communication Assessment? A service

development project.TELEPHONE INTERVIEW RECORD

PARENT/CARERS WHO HAVE ATTENDED A GROUP>> Please ensure participant has completed informed consent"We are now going to start the telephone survey. I am going to read you a series ofquestions. If you don't wish to answer a question, just let me know and we will skip ontothe next question. You don’t have to give me a reason.Please be as honest as you can – we want to hear about not just the things we are doingwell, but the things we could be doing much better too."PARTICPANT ID NUMBER:DATE OF SURVEY:

SECTION ONE: Some questions about you and your familyWe would like to know some information about you and your family to help usunderstand what factors might make it difficult for you to attend a parent/carercourse. These answers will not be used to identify you.

1. How would you normally travel to appointments at the Child Development

Centre?

(please tick all that apply)

Publictransport

Drive inown car

Get a lift Walk Taxi Cycle OtherPleasestate:

Any comments?

2. How long on average is your journey to the clinic? (please tick one)

0-15minutes

16 – 30minutes

31 – 45minutes

46 – 60minutes

Over 60minutes

Any comments?



3. How many hours a week do you work (including paid and unpaid work)?

(please tick one)

0 - 10 11 – 20 21-30 21-40 41 +

Any comments?

4. How many children do you have in total? (please tick one)

1 2 3 4 5 6 7 or more

Any comments?

5. Do you consider yourself to have a disability? (Please tick one)

Yes No Prefer not to say

Any comments?

6. Is English your first language? (Please tick one)


Any comments?

7. Is there anything else we should know about you and your family which might

affect your ability to attend parents/carer courses?



SECTION TWO: About the course you attendedThe next set of questions are about the parent/carer course you have attended at the ChildDevelopment Centre. This was either called Pathfinders or Next Steps.

8. Firstly, did you book onto the first course you were offered, or did you attend alater course? Please tick one

I booked on to the firstcourse I was offered

I waited for a latercourse

I can’t remember

Any comments?

8b. If you did not book onto the first course available, what reasons were there forthis? If attended first course offered, skip to 9.

Please tick all thatapply

The course was full when I tried to book it

Time was not suitable

Location was not suitable

Day of the week was not suitable

I had work commitments

I had a holiday or other leisure commitments

I didn’t feel ready to attend the course yet

I didn’t think I needed to attend a course at thatpoint

Attending a group made me feeluncomfortable/anxious/nervous



I or a family member were ill

Other:

Any comments?

9. Before you attended the course, how well did you understand the purpose of the

course? (please tick one)

1I didn’t

understand thepurpose at all

2 3 4 5I understood

completely thepurpose of the

course

Any comments?

10. Before you attended the course, how much of a priority was it for you to attend

the course? (please tick one)

1Attending the

course was nota priority at all

2 3 4 5Attending the

course was oneof my toppriorities



Any comments?

11. What did you want to gain from attending the parents/carers course?

Please tick all that apply

I wanted to learn more about my child’sdifficulties

I wanted to meet other parents/carerswho have a child like mine

I wanted resources/leaflets

I thought I had to attend

My partner/family thought I should come

Other:

Any comments?

12. Thinking back to the practicalities of the course that you attended (e.g. the room,location etc), how would you rate each of the following things? (Tick one box perrow)

1 –Poor

2 -Unsatisfactory

3 –OK

4 –Good

5 –Excellent



Thebookingprocess

Thelocation

The roomitself

The day ofthe week

The time

The lengthof eachsession

Facilitiese.g.tea/coffee,handouts

Any comments?

13. Do you have any other comments about the practicalities and accessibility of thecourse you attended?

13. Is there anything which the service could have done to have made it easier foryou to attend the course? E.g. different times, locations, shorter course

SECTION THREE: Questions about courses more generally



We’d like to know about your preferred arrangements for a course. These questionswill help us to design better courses for parents/carers in the future.

14. Generally, how much do you enjoy attending group courses? (please tick one)

1I strongly dislike

groups

2 3 4 5I very much like

groups

Any comments?

15. Now we’d like to know the sorts of things you need and want from a group.Please tick your preferred arrangements from the following options. You canselect as many as you wish.

15a. Time of group (timings are approximate)

Tick if preferred time

Early morning - e.g. 8:00 – 10:00

Mid morning - e.g. 10:00 – 12:00

Early afternoon – e.g. 12:00 -14:00

Late afternoon e.g. 14:00 – 17:00

Evening – e.g. 17:00 – 19:00

Any comments?



15b. Location of course

Tick if preferred location

NHS premises e.g childdevelopment centre

Local venue e.g. library meetingroom

Other: please state here

Any comments?

15c. Facilities for the courseHow strongly would you like a course to provide the following?

Facilities 1I am notbotheredabout this

2 3 4 5I want thisstrongly

Free parking on site

Bus stop outside thevenue

Handouts provided

Tea/coffee provided

Other: please state

Any comments?



16. If you have any other comments about how parent/carer courses are run at theChild Development Centre, how we can improve them or how we can make themeasier to attend, please let us know here.

“That’s the end of my questions. Thanks for answering this telephone survey – yourfeedback is truly valued.Do you have any questions for me?”>> answer any questions“If you have any questions in the future, you can contact me, Jason or the ChildDevelopment Centre and we’d be happy to help you. Our contact details are on theinformation sheet.If you decide later that you have changed your mind and you don’t want to take part, youcan withdraw your data from this study. Again, you can do this by contacting me or Jasonusing the details on the information sheet.”>> check participant still has these details. If not, give them out

Thank you again for taking part.[End call]



What are the barriers and facilitative factors for parent attendance at group-basedinterventions following a Complex Communication Assessment? A service

development project.TELEPHONE INTERVIEW RECORD

PARENT/CARERS WHO ARE ON THE WAITING LIST>> Please ensure participant has completed informed consent"We are now going to start the telephone survey. I am going to read you a series ofquestions. If you don't wish to answer a question, just let me know and we will skip ontothe next question. You don’t have to give me a reason.Please be as honest as you can – we want to hear about not just the things we are doingwell, but the things we could be doing much better too."PARTICPANT ID NUMBER:DATE OF SURVEY:

SECTION ONE: Some questions about you and your familyWe would like to know some information about you and your family to help usunderstand what factors might make it difficult for you to attend a parent/carercourse. These answers will not be used to identify you.

14. How would you normally travel to appointments at the Child Development

Centre?

(please tick all that apply)

Publictransport

Drive inown car

Get a lift Walk Taxi Cycle OtherPleasestate:

Any comments?

15. How long on average is your journey to the clinic? (please tick one)

0-15minutes

16 – 30minutes

31 – 45minutes

46 – 60minutes

Over 60minutes

Any comments?

16. How many hours a week do you work (including paid and unpaid work)?

(please tick one)

0 - 10 11 – 20 21-30 21-40 41 +



Any comments?

17. How many children do you have in total? (please tick one)

1 2 3 4 5 6 7 or more

Any comments?

18. Do you consider yourself to have a disability? (Please tick one)


Any comments?

19. Is English your first language? (Please tick one)


Any comments?

20. Is there anything else we should know about you and your family which might

affect your ability to attend parents/carer courses?



SECTION TWO: About your needs from a parent/carer courseThe next set of questions are about what you want and need from the parent/carer coursesat the Child Development Centre. You might have been offered a group but have beenunable to attend one so far, or you might not have been offered a group yet.

21. Have you been offered a parent/carer course yet?

Yes No I can’t remember

Any comments?

8b. If you have been offered a course, why was it that you were unable to attend? Ifhaven’t’ been offered/can’t remember, skip to question 9.

Please tick all thatapply

The course was full when I tried to book it

Time was not suitable

Location was not suitable

Day of the week was not suitable

I had work commitments

I had a holiday or other leisure commitments

I didn’t feel ready to attend the course yet

I didn’t think I needed to attend a course at thatpoint

Attending a group made me feeluncomfortable/anxious/nervous

I or a family member were ill

Other:



Any comments?

22. How well do you understand the purpose of the course? (please tick one)

1I don’t

understand thepurpose at all

2 3 4 5I understand

completely thepurpose of the

course

Any comments?

23. How much of a priority was it for you to attend the course? (please tick one)

1Attending thecourse is not apriority at all

2 3 4 5Attending thecourse is one

of my toppriorities

Any comments?



24. What do you want to gain from attending the parents/carers course?

Please tick all that apply

I want to learn more about my child’sdifficulties

I want to meet other parents/carers whohave a child like mine

I want resources/leaflets

I thought I had to attend

My partner/family thought I shouldattend

Other:

Any comments?

SECTION THREE: Questions about courses more generally

We’d like to know about your preferred arrangements for a course. These questionswill help us to design better courses for parents/carers in the future.

16. Generally, how much do you enjoy attending group courses? (please tick one)



1I strongly dislike

groups

2 3 4 5I very much like

groups

Any comments?

17. Now we’d like to know the sorts of things you need and want from a group.Please tick your preferred arrangements from the following options. You canselect as many as you wish.

15a. Time of group (timings are approximate)

Tick if preferred time

Early morning - e.g. 8:00 – 10:00

Mid morning - e.g. 10:00 – 12:00

Early afternoon – e.g. 12:00 -14:00

Late afternoon e.g. 14:00 – 17:00

Evening – e.g. 17:00 – 19:00

Any comments?

15b. Location of course

Tick if preferred location



NHS premises e.g childdevelopment centre

Local venue e.g. library meetingroom

Other: please state here

Any comments?

15c. Facilities for the courseHow strongly would you like a course to provide the following?

Facilities 1I am notbotheredabout this

2 3 4 5I want thisstrongly

Free parking on site

Bus stop outside thevenue

Handouts provided

Tea/coffee provided

Other: please state

Any comments?



16. If you have any other comments about how parent/carer courses are run at theChild Development Centre, how we can improve them or how we can make themeasier to attend, please let us know here.

“That’s the end of my questions. Thanks for answering this telephone survey – yourfeedback is truly valued.Do you have any questions for me?”>> answer any questions“If you have any questions in the future, you can contact me, Jason or the ChildDevelopment Centre and we’d be happy to help you. Our contact details are on theinformation sheet.If you decide later that you have changed your mind and you don’t want to take part, youcan withdraw your data from this study. Again, you can do this by contacting me or Jasonusing the details on the information sheet.”>> check participant still has these details. If not, give them out

Thank you again for taking part.[End call]



Appendix 3

Summary document disseminated to staff.

Service Evaluation Project: Summary of ResultsBarriers and facilitators to attendance at Pathfinders

Kathryn Palmer, Trainee Clinical Psychologist, University of LeedsCommissioned by Jason Miller, Clinical Psychologist, Child Development Centre.

Background: The national recommendations state that, after a diagnosis of autism,

parents should receive parenting support. This can be delivered cost-effectively, efficiently and with excellent outcomes in a group format(Engwall & MacPherson, 2003; Stevens & Shields, 2013; Banach, Iudice,Conway & Couse, 2010).

However, group programmes are only effective if parents can attend. Previous research has highlighted common barriers and facilitators to

attendance at parenting groups (e.g. Birkin et al., 2008; Mytton et al., 2013). Staff at the Leeds CDC have queried the accessibility of the Pathfinders

course.

Aims:To understand barriers and facilitators to attendance at the Pathfinders coursefrom the perspective of

c) parent/carers who have attended the coursed) parents/carers who are on the waiting list to attend a course

Method:10 parents who had attended Pathfinders, and 6 parents on the waiting list, tookpart in a 15 minute semi-structured telephone survey.

Results:1. Characteristics of parents

Parents most frequently travelled by car or bus with most journeys under 30minutes. For almost all families, one or both parents were in full-time employment.Parents waited between 4 weeks and 8 months to access Pathfinders.

2. Evaluation of PathfindersParents who had attended rated Pathfinders highly and generally found itacceptable. Parents rated attendance as a high priority. However, a proportion ofparents said they had felt unclear about what Pathfinders was before attendance.Parents were most dissatisfied with the time or day of the course they attended orwere offered, stating they needed the course to align with their work pattern andchildcare.



3. Barriers identifieda. Everyday barriers. Families described work, childcare and other

responsibilities (e.g. study) as barriers to attending any additionalappointments.

b. The difficult wait. Parents who waited more than around 3 monthsfelt their wait was too long. More resourceful parents arranged theirown support (e.g. by hiring carers or an ABA tutor) which reducedtheir motivation to attend Pathfinders. Other parents said the waitwas stressful due to lack of contact and support.

c. Dissatisfaction with the course itself. Parents felt the course wastoo basic, repetitive of other information e.g at Autism Awareness ortoo didactic. The majority of parents found the lack of parking(especially at Wortley Beck) a large annoyance.

4. Facilitators identifieda. Initial motivation. Parents needed a willingness to learn, a problem

to solve via the course, and faith in the course that it could providethe answers.

b. A supported wait. Parents who waited less than 3 months for thecourse rated the speed of access highly. Parents also benefitted fromclear expectations of the length of wait, plus advance informationabout the topics covered on each week of the course.

c. A meeting of minds. Parents praised the expert knowledge andsupport received from facilitators, the ability to share tips with otherparents, and the emotional support of the group.

Limitations: Small sample size Methodological constraints meant parents who might have most barriers to

attendance could not take part e.g. parents who did not speak English, notat home during the working day.

Parents who rejected Pathfinders outright and did not wish to be placed onthe waiting list were not surveyed.

Recommendations:1. Combatting the everyday barriers: Consider varying the time and day of courses to accommodate differing

childcare and working patterns. Consider occasional weekend or evening classes to accommodate

working parents. The provision of childcare would maximise attendance.

2. Improving the waiting period Ensure parents have clear information about the aim and format of

Pathfinders and the expected wait.



Send an update to parents during the waiting period. This could take theform of a newsletter which provides other sources of support andinformation.

Provide courses with enough regularity that the waiting time can bereduced to under three months.

Provide at least six weeks’ notice to allow parents time to makearrangements.

3. Developing the course itself Use of digital resources including digital or online copies of the material, or

videos that can be re-watched at home. Ensure the course content is non-didactic, specific and tailored, and

reduces overlap with other appointments or courses provided by the CDC. Consider using reminder texts ahead of sessions. Investigate alternative venues or parking arrangements. Consider inviting parents with older children with autism to share their

experiences with parents. Consider providing additional time for peer discussion and support. For

example, at the end of the session, a space could be booked for anadditional hour for parents who wish to stay longer. Alternatively, othersocial and supportive groups could be set up outside of the Pathfinderscourse.

4. Future evaluation If resources allow, further evaluation might take the form of selective

interviews with target groups who are underrepresented at Pathfinders(e.g. Birkin, Anderson, Seymour & Moore, 2003) or analyse thedemographic data of parents who attended Pathfinders compared to thefamilies attending the CDC, and the local population.

For more information, please read the full report entitled “What are the Barriersand Facilitative Factors that affect Parent/Carer Attendance at a Group-BasedInterventions following a Complex Communication (Autism) Assessment?”,available from Jason Miller.

References:Engwall, P., & McPherson, E. (2003). An evaluation of the NAS EarlyBird

program. Good Autism Practice, 4, 13–19.Banach, M., Iudice, J., Conway, L., & Couse, L. J. (2010). Family support and

empowerment: Post autism diagnostic support group for parents. SocialWork with Groups, 33(1), 69-83.

Birkin, C., Anderson, A., Seymour, F., & Moore, D. W. (2008). A parent-focusedearly intervention programme for autism: Who gets access? Journal ofIntellectual & Developmental Disability, 33(2), 108-116.



Mytton, J., Ingram, J., Manns, S. and Thomas, J. (2013) Facilitators and barriersto engagement in parenting programmes: A qualitative systematic review.Health Education and Behavior, 41 (2), 127- 137.

Stevens, J., & Shields, J. (2013). Does attending an NAS EarlyBird or EarlyBirdPlus programme make a difference? Good Autism Practice, 14(2), 82-89.



Appendix 4:

MREC Ethical approval letter



Appendix 5:

Local Trust approval letter

what are the barriers and facilitative factors that affect ... · assessment, 2003, pg 43)....

Documents