Table 2 Fathers’ Recommendations for Parents, Service Providers, and Policymakers

For Parents

 1. It is all about connections

(utterances: 11)

“Make connections in all the groups that have to do with your child’s disability for sure, but also keep connections in communities at large.” (F18)

“Try to maintain the contacts you had prior to having your child and, and not let those go and don’t trek into your own little world.” (F10)

 2. Ask for help and Take the help

(utterances: 9)

“And don’t be afraid to ask people for help and don’t be afraid to accept it. I know that goes against a lot of us, I know it did us, but you will need help, just suck it up and take it.” (F18)

 3. Advocate for your child

(utterances: 8)

“Just get ready for the fight. Put aside 50% of your resources and get ready for the fight, cause you’re going to have to. The system is not going to reach out to you. You have to fight for your child.” (F20)

 4. Get involved and Get your child involved

(utterances: 7)

“I would say find something that the child can participate in or you and the whole family can participate in. It gets rid of some of the stress.” (F19)

 5. Don’t neglect yourself or your partner

(utterances: 5)

And then you can’t forget about yourself. It’s very easy to do that and I mean I’m talking about just not the individual but you as a couple. Because it happens so fast you don’t even realize it and instead of being a couple, now you’re individuals that are living in this house, but looking after the same individual.” (F10)

For Health & Social Service Providers

 1. Communicate authentically with families

(utterances: 12)

“Be very forward, don’t hide anything from parents.” (F18)

“It would be nice if there was something out there that explained everything right away. This is what you’re entitled to, this is what is out there, this is what’s happening. And we have spoken to social workers about that.” (F20)

“Don’t use those big words when you’re talking to people. I don’t know how you put that, I don’t know – get down to their level and talk to them eye to eye. Tell them straight the, about things, not using the big words and stuff like that.” (F8)

 2. Listen to parents

(utterances: 9)

“Listen to the parents. Yeah, take an extra minute. Don’t rush us out the door.” (F6)

 3. Show that you care

(utterances: 7)

“What I would say makes a difference between a great doctor and an okay doctor or a nurse is just that ability to empathize. I know you can’t put her name in this but that’s what I love about Dr. X. She’s dedicated herself to this. I know she cares, even though I don’t think she really understands exactly what it’s like, but she tries, you know? She tries to kind of understand and you really feel that from her.” (F18)

“We are not parents that are going in’cause our child has pneumonia and this is the only time my child’s ever going to be in the hospital. We’re in there on a regular basis. We’re involved with the medical community on a regular basis. Don’t forget that. Have a bit more compassion you know? Some people in the medical community don’t have that compassion.” (F17)

 4. Recognize parents as experts on the child

(utterances: 4)

“Trust and believe what the parents are saying. We’re the ones that spend 24/7 with him type of thing. And if we’re telling you that there’s an issue, believe that there’s an issue and understand that there’s an issue.” (F22)

 5. Be proactive

(utterances: 4)

“That’s another thing. Be proactive. The doctor we have now, Dr. “M” is very proactive- asking us, getting stuff done, making sure that he’s doing everything, making sure that our names are going to be put down for future tests and stuff, finding the exact genome of whatever it is that he [child] has that’s wrong, because they want to know exactly what’s wrong and stuff like that.” (F34)

For Policymakers

 1. Funding for new and current programs and resources

(utterances: 12)

“We need more, more, more programs, more fully funded programs, uh that’s the key, that’s the key.” (F17)

 2. Need for leadership

(utterances: 8)

“I would tell them just to follow through on what they promise. If they say they’re going to look into something, look into something. If they, putting in a new bill that gives children more rights or something\, do it, you know.” (F6)