Table 3 Recommendations for modifications

Ensure that FNs have sufficient supervision

0

2

X

X

Better fidelity to intervention

Training & Evaluation

C

Improve effectiveness/outcomes

“It’s really hard if you are on your own, like if you don’t have anyone who can help you with difficult cases. So like someone to turn to with difficult cases would be good.” – Navigator 2

Change the dosage by offering a monthly check-in option

1

0

X

X

X

Spreading (breaking up session content over multiple sessions)

Content

U

Improve fit with recipients

“Once a month just call the people that have autism – you know, they might have a lot of questions that, you know. Because usually when you try to call your doctor’s it’s hard to get them on the phone (…) if you have a [FN] that would be calling every month you can kind of tell them certain things and they help you out.” – Parent 19

Implement more active follow-up/checking in

3

1

X

X

X

Adding elements

Content

I

Increase retention; improve effectiveness and/or outcomes

“Just once we close out with the families, I feel like the families, they’re dropped and when the study ends, I feel like, even though they had the tools to continue on their own, I feel like there could be some kind of communication with the families after the study. Just to, you know, provide some sort of reassurance or to do a, a follow-up.” – Navigator 5

Lengthen the intervention

10

3

X

X

X

Lengthening/extending (pacing/ timing)

Content

I

Improve effectiveness/outcomes; increase satisfaction

“As the kids – as they grow up – they give you changes, you know. So it’s like you expect new things coming up and it’s like you’re not familiar with this new behavior, so you don’t know how to handle it, you know.” - Parent 19

Focus the intervention at transition points, such as transition into EI or school

2

2

X

X

X

Spreading (breaking up session content over multiple sessions)

Content

I

Improve effectiveness/outcomes; maybe also increase fit with recipients

“If my time was split between her going – just getting diagnosed and going into [EI] and then doing that transition again from – at the end of the 2-year-old to three. Like say a month or two before that, and then maybe two or three months after she’s [enrolled in services] officially. I would have really appreciated that because I just – it was just too much. That was just way too much.” – Parent 3

Improve communication between doctor and FN

2

2

X

X

Better fidelity to intervention

Implementation & scale-up

C

Improve feasibility; Improve effectiveness/outcomes

“We [FNs] would let [PCPs] know when appointments were scheduled and we would let them know the results of the assessment um…for the most part that’s all I initiated with them, unless I was having trouble reaching a family and they wanted to see whether they had seen them any time recently or they had new contact information or had a different way to reach out. (…) that’s something that that’s maybe is worth improving in our project… I definitely have more communication with the DBP than the PCP. – Navigator 2

Have FN meet with DBP prior to diagnostic visit so that the FN can prep the family

1

0

X

X

Adding elements

Implementation & scale-up

U

Increase satisfaction; address cultural factors

“I think it’s best if, even if [DBPs] could do like a one on one or a meeting to let the navigator know everything that is going on before, because it will help her - it will help the peer navigator to be prepared for the result. So let’s say if the kid is diagnosed with a medical condition and the parents would not know how to handle that, but at least if she already has the heads up she can do the research and find out, “Okay, the kid is diagnosed with this, I could be able to help in this way”. And then I feel that the peer navigator can be prepared. So when the parent finds the news, she’s there. She knows what to say, how to react. And she can even start preparing the parent before they find out the result. Like not tell them, but at least… easy the situation.” – Parent 5

Have the PCP make the intro to FN

3

1

X

X

X

Changes in packaging or materials

Implementation & scale-up

C

To address cultural factors; improve reach or engagement

“The introduction always made in the hospital because that’s how I get mine. I think it’s okay to let the doctor do it. It’s better because some of the people, they trust their doctor better than anybody. So when the doctor refers them to somebody, they will take it seriously – more serious than if it was anybody else.” – Parent 1

Don't have the PCP make the intro to FN

1

0

X

X

Changes in packaging or materials

Implementation & scale-up

U

Improve reach or engagement

“I personally don’t think I would prefer [being introduced to FN by my PCP] because I might be, you know, getting – I might be having a lot going on as is with the appointment.” – Parent 2

Connect parents to other parents in similar situations

1

0

X

X

X

Adding elements

Content

C

Increase satisfaction; address cultural factors

“I think [parents] would like to connect more with other parents with this issue. Because I mean that’s what I’m going through, what they’re going through with… So they kind of feel normal. Like I know like, you know, autistic kids, like that they’re normal, but when you first experience it and nobody knows anyone who’s going through it, like you really feel out of the loop and so like (…) if you can ask one of them like can you connect me or is there groups that I can go to or is there certain parks that I can go to with parents who have other children like mine who I can sit and talk with. Like the [navigators] are good for that.” – Parent 3

Emphasize holistic thinking about the families, such as interactions with siblings

2

0

X

X

Tailoring/ tweaking/ refining

Content

C

Improve fit with recipients; address cultural factors

“Um, maybe the only thing I would suggest is um, because I have, I have five kids altogether – [Child] is actually the one that we were working with and he’s the fourth. So, he has three older siblings. Maybe just a little bit more on how to, how to better like explain things to them, ‘cause they, they kind of get it. Um, I have a 6-year-old actually who just really is trying to understand. You know, but there’s only so much you can tell them.” – Parent 7

Allow option for tailoring communication type/amount based on parent preferences

3

0

X

X

Tailoring/ tweaking/ refining

Implementation & scale-up

I

To improve fit with recipients; increase retention

“A navigator just needs to know their family and know that like (…) if the family wants them to be like just showing up randomly or just calling and like trying to show them new things and like just unasked, then that’s good. But it also if they don’t, and they want to go like day to day, like if they need something then they know they can call (…) like knowing the family that they’re working with and knowing what that family prefers, like how that family prefers to work with them.” – Parent 3

Have navigator coordinate or consolidate services for families that are receiving many services

1

0

X

X

X

X

Adding elements

Content

U

Improve effectiveness/outcomes; increase satisfaction

“Okay, because like for our kids we had the [navigator], but then we also had, you know, for our other kids we had like Care Coordinators and, you know, like Therapists that were working with them, and like a whole bunch of other services. And I feel like the Navigator like could be like – because even in the name, like navigator, you think that that would be somebody who like takes care of all that stuff. Because I feel like it gets a little bit much and kind of redundant when you have so many like other people who are kind of doing the same thing (…) Maybe you could have – like the Navigators could somehow like look into all the services they’re having and find a way to like help consolidate it so that it’s not overwhelming.” – Parent 7

Add formalized education about ASD and parenting kids with ASD

6

0

X

X

Adding elements

Content

C

Improve fit with recipients; address cultural factors

“Just like when you have a newborn, I think they should have some type of classes for how to deal with kids that have autism.” – Parent 4

Add education on how to get services and navigate the system so that they can continue after navigation ends

1

1

X

X

Adding elements

Content

C

Improve effectiveness/outcomes; improve fit with recipients

“So, like if there’s a way for us to actually like, you know, sit together in front of like a laptop and actually do the search together so that they’ll know how to go about getting those services, not just me doing it. Like I can be a teacher in showing them how to like apply for certain services. Like this is the website that you go to. This is the – this is where you need to click to like, you know, actually get what you need.” – Navigator 2

Have FN attend all DBP visits with family

1

0

X

X

X

Adding elements

Implementation & scale-up

C

Improve fit with recipients; increase satisfaction; address cultural factors

“I would think that [navigator] could like go with us – like where we have appointments with [child] because we have a lot of visits in the clinic, so yeah. I wish if she could like come with us in all appointments.” – Parent 4

Have FNs offer therapy/ additional emotional support for parents or connect parents to therapy services

1

0

X

X

Adding elements

Content

U

Improve effectiveness/outcomes; increase satisfaction

“It’s a hard pill to swallow sometimes, you know. And depending on the type of parents or parent that you are, because I’m a single parent there is a lot to juggle when you have other children, and you’re not working, because you don’t trust people, your child doesn’t speak, you know it’s to a whole nother level of understanding how your life is changing that you, you know you just thought you had a kid and things want to be ‘normal’. But it’s just a flip. So, it should be good that it’s suggested for the parents to get some help as well” – Parent 19

Emphasize normalization of ASD in the intervention

4

0

X

X

Tailoring/ tweaking/ refining

Context

C

To address cultural factors

“Just that additional person there to help you out through the process just makes you more comfortable with the actual diagnosis and, you know, accepting that there is nothing different, I guess, with your child and the diagnosis.” – Parent 20

Make transition between navigators smoother, maybe through in-person meetings

0

1

X

Personnel

Implementation & scale-up

C

Increase retention; increase satisfaction

“I was able to give like an introduction, told them like who I am and like basically my role in this – in working with them. But I just feel like – I don’t know, I just feel it should be a better transition not only introduction. And just like – I don’t know. I just – having also more communication, not only through like phone, but in person so that we can like build that rapport and just like let them know that even though your prior navigator had left, like this person is here to like help you and give you that same support that the person prior had given you.” – Navigator 2

Integrate FN into primary care

4

1

X

X

Setting

Context

C

Improve reach or engagement

“There’s no way for [parents] to ask for [FN] if they don’t know about it. So maybe – maybe primary cares should be mentioning it to like, you know, people that qualify to kind of to have such a thing, you know, like yeah. So I think maybe something that should kind of mention to them if they are interested. It’s not something, you know, like if – there’s some people that might like it, you know, but they don’t know about it. So there’s no way they will be – you know – they will request for it. Yeah, so I think that’s what it should be.” – Parent 19

Broaden FN across healthcare systems and hospitals

1

0

X

X

X

Setting

Context

U

Improve reach or engagement

“[FN] should be all over the place… Meaning that it should be available for every pediatrician in the city, in the whole state, it should be available. It shouldn’t be just in Children’s Hospital. It shouldn’t just be there. It should be all over because there are families all over who have autistic children and some who are in denial that their child is even having these particular learning disabilities, like that they’re having these issues.” – Parent 17

Quickly connect with families after referral to FN

0

1

X

Personnel

Content

C

Improve reach or engagement; increase retention

“I like didn’t rush to meet with them and so I think…and this also had to do with holidays and I think it kind of got lost who I was because we didn’t pick up the first two times. I think there was something major going on in her life at the moment, like there was someone in the family in the hospital and so, there was probably several circumstances, and part of me was like I feel like I don’t need to be involved right now so, I’m going to let her deal with those things but then minus time to start getting ready for the intake and I can, kind of, make contact but um we…we had some strange communication for a couple of weeks and then we kind of rush to get everything done before the intake.” – Navigator 2

Offer home visits with the navigator

2

0

X

X

Setting

Content

C

Improve fit with recipients

“I mean it would be convenient for them to you know come out to the parent’s house, it would be cool. You know to see the parent you know having to change the routine and take your child with these issues too, you know if you don’t have a babysitter or whatever the case may be like, and I know it’s not always required for you to bring the child, but yeah, it would be nice if they could just come to you.” – Parent 19

Hire navigators with personal experience with ASD

2

1

X

X

Personnel

Training & evaluation

C

To improve fit with recipients

“I feel like people underestimate the value of maybe personal experience. And so if you’re working with somebody like has a family member with autism or works with children with autism, like that’s really invaluable in the process because then they’re not going to, you know … I don’t know. You can just kind of tell when people don’t know what they’re talking about. And when, you know, so I feel like it really helps when somebody is understanding because of personal experience.” – Parent 19

Hire bilingual/ bicultural navigators

1

3

X

X

Personnel

Training & evaluation

C

To address cultural factors; to improve fit with recipients

“Many times you can’t get someone who speaks the same language so it’s going to take longer for them, and perhaps you want to ask something, but if they don’t understand you 100%, they won’t provide the same kind of help.” – Parent 11

Hire someone from the community or the same culture

0

4

X

X

Personnel

Training & evaluation

C

To address cultural factors; to improve fit with recipients

“I’ve had some moms say to me…point out to me my whiteness…my master’s degrees um…and I totally understand and I…I don’t think it was like…I think I was able to get passed that, as like being a barrier for their…worked in this…I used to work at WIC and [Community Health Center], and I did [program]. So, that’s like what they’ve always done so, it’s not like I’m comfortable with that, but I think that ideally it would be someone more in the community.” – Navigator 2

Hire navigators that have experience going into families' homes

0

1

X

X

Personnel

Training & evaluation

C

To improve fit with recipients

“We’re going into people’s homes, um so I think just really having navigators who are comfortable with that role, comfortable going in there um and meeting the family where they’re at, and just kind of helping them move forward from there. So I think that’s important to hire the right type of people who are committed to this job.” – Navigator 4

Hire navigators with background in social work or psychology

0

1

X

X

Personnel

Training & evaluation

C

Improve effectiveness/outcomes

“It’s important to have a background in social work or psychology just to have that foundation um of understanding um people and how people interact um their needs, and culture and exploring that.” – Navigator 4

Increase access to FN for similar families

13

1

X

X

n/a

Implementation & scale-up

U

Increase reach or engagement

“I feel like any – I don’t care if it’s autism, cancer, whatever. Like I feel like any type of family that is dealing with some type of devastating news about their child would benefit from a [FN].” – Parent 19

Increase access to FN for families who do not speak English and/or are undocumented

2

1

X

X

n/a

Content

C

Increase reach or engagement

“In the group my son was sent to, I met several moms who didn’t know how to go to therapy in [city]. They didn’t know how to go or what to do. And they spoke Spanish. So, people like that could receive guidance and help.” – Parent 10

Increase access to FN for families with children with other disabilities

3

1

X

X

n/a

Content

U

Increase reach or engagement

“A person like [navigator] would help any type of families living with children with problems; not only like [ASD], but also with other issues, because not all of us have the same problems or the same type of children. So I think that in terms of the help she provides, I think she helps a lot of people… how could I put it? At any point we need their help, but not only for children with autism, but also for children who are deaf-mute and so on. I think it would be very helpful for us parents with children like that.” – Parent 11

Allow parents to refer other families

1

0

X

X

X

n/a

Implementation & scale-up

U

Increase reach or engagement

“I think that improving the program would mean to check if there are more people who need it and get in touch with them. Because some of us need it but we don’t know about it. (…) If you give us permission to talk about them, I would be one of those people who could tell other people about the program.” – Parent 5

Work with clinicians to promote FN

1

0

X

X

n/a

Implementation & scale-up

U

Increase reach or engagement

“I think that regarding the doctors, they make a good team, because that’s where you will find more people like us waiting for help.” - Parent 3

Use publicity tools such as flyers or TV commercials

3

0

X

X

X

n/a

Implementation & scale-up

U

Increase reach or engagement

“I just think that it should be – if it wasn’t for me going to the clinic I wouldn’t know anything about it. So I think like maybe there should be like flyers… or like more broadcast, like maybe on TV and stuff… for somebody who don’t know or haven’t went to a clinic and know that it’s out there to have help from them.” - Parent 1

Make sure navigators understand local services systems

0

2

X

X

n/a

Context

C

Improve effectiveness/outcomes; increase fit with recipients

“Since I was in [other state] coming to Massachusetts, like this is something different. So, like certain, you know, probably [supplemental security income (SSI)] will be different from how [other state] SSI is. So, like probably like the different public benefits and having applied for them and the eligibility criteria might be different. So, maybe in that sense I hope – I wish I would’ve gotten more training in that sense. Like on the social services.” – Navigator 2

Make sure navigators receive orientation and training that includes MI

0

3

X

X

n/a

Training & evaluation

C

Improve effectiveness/outcomes

“I think probably – yeah, [I could have been better prepared by] getting more MI skills. Also like I think it’s also like problem solving skills too… Because like – yeah, like you’re going to – you’re working with different families, so obviously some – the situations that the families are going through is a bit different from one another.” – Navigator 4

Lengthen the training period for navigators

0

1

X

X

n/a

Training & evaluation

C

Improve effectiveness/outcomes

“I think just like a longer period of training, not just 1 week or 2 weeks (…) And like especially if the person doesn’t have any – like experience living with families, then obviously they would need that more of a training. But since I – obviously I was a different case since I worked the families but – yeah. I think it just – like it really depends on the situation.” – Navigator 4

Include training on reporting abuse

1

0

X

X

n/a

Training & evaluation

C

Improve effectiveness/outcomes

“I don’t know, I’m thinking hypothetically, this wasn’t my case, maybe if they see that someone is being abused or harassed, they should notice and maybe derive it or report it to the corresponding authority, I don’t know. Because that could happen.” – Parent 1