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Table 2 Identified services and supports

From: Intense parenting: a qualitative study detailing the experiences of parenting children with complex care needs

Services/Supports

Quotes

Financial Supports

I know families they can’t make a financial go of it. We have most of our drugs covered and, and, you know the medical appointments are covered, but overall our expenses are so high and there’s no way of supplementing our income…. So they need to start looking at help for us. Mother 5

° Examples: disability tax credit; tax free savings account for parents of children with complex care needs; drug benefit programs; funds for supplies (e.g., diapers, formula)

Efficient Respite Services

Evening, evening respite shifts. You know, even if it’s like once every two weeks just so that we have that night to, to go out and go catch a movie. Mother 7

° Including: more respite hours; more flexibility with respite hours; access to respite when needed with no waiting period; qualified and consistent respite workers

Mother: Respite. Of whatever community respite you can access. Father: You need to recharge your batteries and you’ll be better for yourself and for your child. Mother and Father 34

Qualified Professionals and Support Workers who are: knowledgeable, caring, empathetic, respectful of parents’ knowledge, accessible, trustworthy, understanding of the child’s needs, good listeners

What I would say is try to remember that you have no idea what someone else is going through, you have no idea, and you need to listen to parents. What I would say makes a difference between a great doctor and an okay doctor or nurse is just that ability to empathize professionally… Mother 18

Family and Community Supports

Before you might have to be the one who calls up and says, “Come over, I need you (friend) to come over. I want to talk to you. I need you”…. People might not, they might not be there for you unless you really just call them up and say, “I need to talk to you.” Mother 18

° Examples: help from extended family and/or community members or organizations; understanding of the child and what it is like to be a parent of a child with complex care needs

To find a good support system that you can fall back on and find out exactly what can help you out there.’Cause my wife has found so many different programs and organizations and stuff that can help out, and I think that’s the biggest thing. Father 7

Integrated Knowledge Translation

I would find someone who can give you all the information as to what’s available out there for your child but I, I still after five years have not found that person…. There’s no one, whether social work, or government level, or whatever, and it should be [someone] who can say to you “Okay, your child has lots of needs, let’s go through everything from physiotherapy to occupational therapy to whatever. Let’s look at all the resources that at some point you might like for your child, let’s say in the first five years, you know, music programs, swimming lessons, whatever.” Mother and Father 3

° Examples: two-way information exchange between parents and those involved in the child’s care; keeping parents informed in a timely and ongoing manner; more information regarding navigating multiple systems

Um, you know, it’s helpful to know what resources are available and I didn’t find that I had that information. I felt lost and like we were floundering for years. I just didn’t feel like we had those resources, didn’t know where to turn, you know. Mother 27

Access to services/supports (including technology and/or equipment)

Um, and Homecare made sure that we had all our equipment, Manitoba Home Nutrition made sure that we knew, you know, how to make formula and how to mix, you know, mix it properly, because we were making a big batch of it’cause that’s all he had. Um, I guess it was pretty smooth in that the services were trying to make sure we could take him home. Mother 7

Improved Transportation

…We had purchased a van and, but they’re not able to put in a lift and . . . to the van. What we have is just a portable, a portable ramp. Yeah, it’s very expensive to modify the van plus it’s the, the portable ramp, we were able to get a lighter one, but it’s not really very light, you know, so it’s, it’s for me, it’s harder . . . to be on my own to, it’s really hard to do it. And uh, a lift would have been much easier, you know, to take him. Mother 16

° Examples: access to appropriate and affordable transportation; access to adequate parking spaces and loading zones

They pay to have a wheelchair cab come and pick us up to take us to and from doctors’ appointments, which is really great, especially in the winter. Uh, especially when you’re dealing around the hospital’cause there’s never any parking, so it’s nice not to have to do the driving. Mother 5

Accessible Spaces

[Looking at a picture they’ve taken] This whole space is just barely enough to get her chair through. I have to come through here to get into the teen room, the teenage room. Parents put their bags; put their wheelchairs, everything blocking that. Mother 5

° Examples: space that afford parents the ability to carry out their multiple parenting roles

Promoting Self-Care in Parents

Yeah. I’m going to be fifty. I don’t want to be dead at sixty or before sixty’cause stress kills, so I have to reduce that stress in my life. And so right now I’m dealing with people that are trying to help me recognize where the stresses are in my life and how are we going to reduce those, and I’m trying to get my wife on board, because um, I’m sure that she’s under the same kind of stresses. And so we have to decide whether we’re going to be on the same path or we’re going to have to decide to take separate paths,’cause I can’t, I can’t continue to do what I’m doing. That’s, that’s an obvious, so uh, we’re dealing with that at this time right now, between each other and so. Father 10

° Examples: ensuring there is the time and opportunity for parents to take care of themselves (e.g., rest/relax, ‘me time,’ taking part in leisure activities, going for counselling, and so on).