One overarching theme and four subthemes were identified that answered the research question. The overarching theme is intense parenting, with four sub-themes: 1) the good parent; 2) more than a nurse; 3) there’s just not enough; 4) it takes a toll on the health of parents. While there was variability with respect to each parent’s experience, the main theme and sub-themes emerged from the data of all parents in the study. There were no negative cases.

Intense parenting

This overarching theme refers to the extra efforts parents had to commit to in raising their children with complex care needs. In addition to the day-to-day challenges all parents experience in raising children, parents in our study also experienced challenges under the pressure of circumstances associated with the complex care needs of the child. Parenting was described as labour-intensive, requiring a readiness to provide care at any time. This left parents with minimal time for addressing any needs and activities (e.g., social life, vacation, and couple’s time) that are not associated with caring for their child as reinforced by this ecomap [see Fig. 1]. The parent that created this ecomap drew curvy lines for those relationships he defined as stressful and no lines in those situations where relationships were minimal or nonexistent.

A feature of intense parenting is that parents often faced the challenging effects of caring for children who remained fixed in a developmental stage or who struggled with moving on to the next developmental milestone. In short, the demands of parenting that coincide with each of the developmental stages were compounded for parents when children were unable to master one developmental stage and progress into the next. An example of this extended parenting occurs when the child may have the physical stature of an adolescent, while simultaneously requiring the physical care of an infant (dressing, feeding, and diaper changes). As one couple explained:

Mother: She can’t walk, she can’t talk, she can’t eat, she has no fine motor skills, just sort of flailing around. Because she has CP she can’t articulate, and she is tube fed, in a wheelchair and diapered… Oh yeah. She can say mama… I’ve heard her say it. I know she can say it. She thinks this is very funny. Father: Yeah, ‘N’s’ eleven years old and I’m still waiting for dada or daddy. Mother and Father 9.

There were also those cases where children made developmental gains but subsequently lost those gains, regressing to an earlier developmental stage and requiring parents to adapt to loss and change in function and ability. Parents at times felt disorganized and confused about the necessary steps that needed to be taken to address their child’s needs, specifically due to misplaced milestones and unique development requirements of their child.

Another characteristic of intense parenting involved parenting that was described as derailed. Parents shared examples of disordered and unsettled parenting experiences. One mother stated:

No, it didn’t go smoothly because when we first got her out, it was nine months. She was back in the hospital within two days with a serious infection with (inaudible) and 24-hour feed, the equipment never worked, the pumps wouldn’t go. We were always at emergency at midnight. I was off. I never got any sleep. Mother 9.

For most of the parents, intense parenting involved a tag team, or a partnership of intense parenting. Except for a few families where the mother assumed the primary caregiver role, the majority of parents in this study took turns and divided responsibilities and multiple tasks required for caring for their child with complex care needs. Working as a tag team facilitated their ability to cope with multiple physical, emotional, psychological, existential, and spiritual challenges that often arise from the time of the child’s birth. As one parent described it:

Yeah, the best way is one of us stays here with ‘K’ and the other one takes ‘L’ out. Like last night I stayed here with ‘K’ and [my husband] took ‘L’ out to his grandmas to pick raspberries, and go to the park, and stuff. And sometimes I’ll just take ‘L’ and, and we’ll just go to the park and I’ll push him on the swing and stuff like that. Mother 18.

For the majority of single parents, another family member (e.g., a grandparent) assumed the role of the other member of the tag team. Underlying the concept of tag team is the notion that the work or tasks that need to be done are so demanding that they require continuous effort, and there is little “down time.” While others sometimes assist parents (e.g., extended family, support services), the main source of energy for the family is time and the tag team. In many cases this results in intrusions with family engagements causing both physical and emotional strain for the parents.

The four sub-themes contributed to understanding the broad theme of intense parenting. Each sub-theme will be briefly explored.

The good parent

Associated with intense parenting was the parents’ need to be seen as the “good parent.” For parents, being the “good parent” meant not only maintaining their child’s health and safety, but also ensuring that their child had a good life. It was reflected in parents constantly striving to meet their duties and obligations toward their child. In some instances, this involved going that extra mile and making sacrifices.

I would never let him go without. And they do supply a lot of stuff to us and that, but it is just, you know, he has very sensitive skin, so I have to buy all [soap and lotions for sensitive skin]. I can’t just buy cheap stuff for him, it has to be the seven, eight dollars stuff. Um, I can’t just use any kind of soap or he’ll break out, so I can’t just buy cheap soap for him, like, you know…. At the beginning we’ve always had, like when, when he first was sick, I was working and that. And then, that’s when I had to stop because it was stressful for me to be at work when he was in the hospital and that. Mother 11.

Parents in this study felt great pride in how they cared for their child and it was important that others were aware of the work involved in parenting a child with complex care needs. It was important that others perceived them to be “good parents,” as reinforced by the following:

She has to be put out, so as parents, you don’t want her to go through that, because she’s gone through enough operations, so we make sure that we brush her teeth, and do a good job, and she’s eighteen years old. Um, you feel pretty good when you go to the dentist and the dentist says, “Yeah, her teeth look pretty good.” So as a parent, that looking after her teeth um, that’s good, but you accept that responsibility of, you know, ‘E’ (mother of child) wants to make sure that ‘K’ (child) looks presentable outside. I mean I think ‘E’ has seen a lot of people with disabilities that look unkempt. Their hair has not been brushed and that, so when we look after ‘K’ we want to make sure that she looks like she’s being looked after. Her hair is brushed. She’s wearing nice clothes um, you know, but that’s just uh the, the role that we’ve taken on. Father 10.

However, parents did not always feel that others saw them as “good parents.” For example, parents of a teenage son with behavioural and emotional challenges expressed how they felt others judged them when out in public with their son.

Mother: Well, like nothing’s really visible. It’s not physical…. Father: They just think he’s a misbehaved kid, or they think you’re not very good parents. Mother: Well, I mean, there are a lot of times people look at you and think, “Like, why are you holding that kid’s hands for?” But it’s a comfort level for him. Mother and Father 21.

While parents learned and adapted to address the complex care needs of their child, it was clear that society and the environment did not understand or always support parents who were striving to be the “good parent” to their child.

Father: It is funny in terms of the, whether it is family or I assume, in a sense, whether it’s the system, that ‘N’ is not the only fourteen year old incontinent child. Mother: There’s no place to change her. Father: There’s no places to change her, men’s rooms are pretty awful type things, women’s rooms are better. Mother and Father 9.

Parents in this study nonetheless rarely blamed others for not being able to support them in their “good parenting” role, but rather saw it as a lack of understanding on the part of others.

More than a nurse

Intense parenting involved parents taking on a variety of roles to meet the needs of their children: health care provider, case manager, student, teacher, detective, guard, and advocate. All parents in this study took on these seven roles to varying degrees throughout their children’s lives, regardless of their child’s age or care needs. While parents in this study acknowledged that all parents of children assume some aspects of these roles, they nonetheless felt that parents of children with complex care needs did so with more intensity and did so throughout their child’s life.

The health care provider

Parents provided many examples of assuming the role of a health professional to maintain their child’s health and well-being. This included assuming the role of the nurse, even when their child was in hospital, as reinforced by the following excerpt:

He gets his meds at nine in the morning, nine at night, um and all his appointments we’ve been going to, and there’s the feeding tube…Before I had that electrical pump, we were doing it just through the nose, so then they gave me a stethoscope and all sorts of supplies and stuff and I would check for placement in his stomach. And like even at the hospital, too, I did his vitals and everything, like I did lots for him to help out the nurses, like when I was there. I just kind of watched and I just started doing it because they would say, “Okay I’ll be right back in five minutes.” Well then you’d see the nurse walking by, and you know they were busy. Mother 8.

While the role of the nurse was common throughout the parents’ narratives, it was not the only health professional role that parents assumed, as illustrated in this father’s comments:

Yeah, we’ve been trained on quite a bit of things through, you know, homecare, and through the medical system, and through the specialists that we deal with. So, physio, we’ve been trained in physiotherapy and occupational therapy, we’ve been trained in uh, in catheters and, and any piece of equipment she’s got. We’ve been trained, you know, for oximeters. And so if we go to the hospital we can basically, we bring our own equipment usually and we’re the ones, and we’ll put the mask on for her BiPAP (breathing apparatus), and we will monitor the probe, and then, and all those things. Father 17.

The father in this excerpt commented on the knowledge he had gained about equipment used by his child. Equipment and/or supplies that are considered to be the norm of health care settings were also in many of the families’ homes as revealed by one of numerous photographs taken by parents [see Fig. 2].

Parents in this study discussed having to make informed decisions about medical treatment and care, weighing pros and cons of various courses of action, and considering potential consequences of decisions. In many cases making these decisions required acquiring considerable medical knowledge and training. As well, the training involved learning to adjust to the changing dynamics of the child’s condition. For example, a mother of an older adolescent explained that she and her husband were always tweaking her son’s medication because he is growing and changing. Although parents acknowledged the importance of assuming the multiple health professional roles, they voiced that acting as a health professional was challenging and “scary.”

The case manager

In their role of case manager, parents became responsible for managing all aspects of their child’s daily life and care. On a daily basis parents described having to assess, prepare, implement, coordinate, monitor, and evaluate their child’s complex care routines and treatments. Most notably, the management of their child’s care involved extensive and advanced planning as reinforced by the following:

Mother: I’m just saying that, that you can’t pre-plan enough here to realize what you’re going to do there, type thing, and it’s not that you can just suddenly, “Well, let’s take a quick tour over there ourselves just to see what it’s like,” and then bring ‘N’ (child). You can’t do that. Father: There are no proper facilities that you need in order to change ‘N’ and care for her Mother and Father 9.

In an attempt to manage multiple challenging tasks many parents had established strict schedules and routines. There was so much planning and organizing involved in caring for a child with complex care needs that for some parents it was similar to running a business.

I’m trying to, you know, um get better organized where because ‘M’ (son with complex care needs) is like, I mean he’s, he’s a child, but he’s like running a business in the sense that like there’s so much going on with him continuously. You know, you got surgeries and this and that, like there’s so much always that’s continuous that you need to really run him like a business in a sense. That’s because it’s continual for the rest of his life so. That’s how I look, like I don’t look at him as a business but -- do you know what I mean?… Everything’s scheduled for him, you know, to make sure that um, that he’s getting this and that… You have to go pick up his diapers, and make sure he has his medication, and make sure that he’s getting this many calories, and like it’s just, it’s continually every single day. Mother 31.

Planning any event beyond what was scheduled in the child’s daily care plan involved considerable work on the parents’ part. At times, parents would forgo special outings or events, including holidays, because of the work involved in planning and undertaking such events.

The student

In assuming the role of student, parents of children with complex care needs were engaged in a continuous learning process in order to educate themselves about their child and the child’s condition, care, and treatment options, as well as about the ways to cope with the daily requirements and challenges. From the moment parents were made aware of their child’s condition, they became students. As one father stated:

He just looked at us one day and said, “I think she’s going to go home with you and you should start making plans.” You start learning. That was the first thing, learning about spina bifida. Father 17.

Parental roles as students further intensified when they were faced with having to make life or death decisions. Staying informed was critical to making informed decisions related to their children.

Parents maintained their role of students as their children matured – they were always learning. As their children grew, there were many new aspects to learn about, including new treatments and/or services, changes experienced by their child, and navigating new systems (e.g., education system).

As students, parents gained knowledge and understanding through a variety of sources including their own trial and error experiences, the experiences of other parents of children with complex care needs, the internet, and professionals from the health, social service, and educational systems. Most importantly, parents gained understanding directly from their child with complex care needs. In sharing his experience of gaining knowledge and understanding, a father of an adolescent child noted:

We have learned so much about ourselves. I would rather not have learned those lessons. I would far rather wish things had been otherwise, but ‘N’ is who he is. He is basically a happy child, we are very thankful for that. He has got his throwing up and everything under control. He does enjoy a lot of his aspects of his life, and it’s been educational to see that a person in his condition does have a life, he does, he really does. It’s not the life we would have wished for him, but it is the life he’s got, and it’s the life we’ve got, and we can live with that. Father14.

The teacher

Parents of children with complex care needs combined the role of being a student with that of a teacher. In their role of student they became knowledgeable about their child’s unique condition, symptoms, and treatment practices through extensive research as well as first-hand experience. As such, parents knew their child best and thus became a key source of information about their child. Parents were eager to provide guidance to respite workers caring for their child and share their knowledge with their children’s physicians and health care team.

Especially for rare disorders, the doctors I think need to listen to the parents more,’cause the parents are doing all the research. ‘L’ (wife) went on and did so much research, talked to all the parents who’ve gone through things. At one time she recommended one of the new drugs to the doctors. The doctors never heard of it or had no idea about it, but she knew other parents who had success with [this drug]. She’s informing them. Father 18.

Parents also noted that they helped educate their extended family, friends, and the wider community, about their child’s condition and needs. For example, a mother of a school-age child explained her role as an educator of her community in the following way:

‘D’ (child) is our number one, that, nothing surpasses that. But then… the community is so important. Letting people know, like I’ll have people come up in the grocery store or wherever, and somebody will ask and we always try and answer questions about ‘D’. But the more knowledge people have uh, the better. Mother 17.

Parents also found it was important to share their knowledge in parenting their children with complex care needs with other parents in similar circumstances as they felt it would help them deal with the challenges.

The detective

Assuming the role of detective involved parents figuring out various aspects of their child and child’s care. For example, one mother of a child who was blind and hearing impaired described coming to understand that her child was blind:

But he suddenly started to play and I just realized, I smiled right at this child and he doesn’t smile back unless I touch him or tickle him. But I can look right in his face and smile and I get no response. And he doesn’t reach out for any of his toys anymore, and uh, and so I, and so I sort of flicked my fingers in his face like this, and I got no response. Mother 18.

While various tools and resources were available to help parents care for their children, the tools and resources were not always clear-cut or universal, so learning about them further required uncovering and investigative work on the part of the parents. A father of a school-age child explained:

When people ask me now about, you know, what about raising children, I go, I don’t know how to raise a traditional child, because all I know is the one we had was very unique. But yeah, so that – it was, it was scary. We were given a lot of tools, but a lot of it we had to figure out ourselves. Father 17.

Parents in this study shared examples of having to figure out how to make the technology and equipment that their child required work best for their child and their family. They explained that they would try various types of technology and treatments or medical procedures multiple times to find the ones that worked best for their child, and they were not always successful despite their efforts.

Parents sought to understand their children’s thoughts, feelings, and behaviours in order to be able to provide their children with the best care possible. In situations when parents were unable to figure out or understand their child, parents felt stressed and uncertain about their abilities to parent.

You know he’s got a stomach ache, but what is it? Is it because he ate something wrong or, or he had the flu, or is it a pain, or is it, you know? And that’s the frustrating part in not being able to get that. Father 24.

The guard

To ensure their children’s safety and well-being, parents assumed the role of a guard which involved watching over and protecting their children. Part of being the guard involved parents monitoring their child’s health status as noted by the following:

He was good all weekend and then Saturday he just started coughing all night…Yeah, I had to take him the hospital to be, just to be sure that it was nothing serious. They just said it was, you know, a little bug and that it would go away in a couple, a few days. Father 4.

There was also the monitoring of procedures or treatments that children had to go through as this mother of a preschool child described:

A lot of kids with neurological needs and special needs, you know, once they get really worked up it takes a long time to calm them, and yeah, I was pacing the hall. I could hear him screaming for like just about a half an hour. I could hear him screaming and just screaming…. They were just putting the probes on him and I finally came and banged on the door… and said, “Open it.” And I was just like, “Okay, this is way longer than a little while. He’s never going to calm him down, let me in there with my child.” I’m usually a fairly calm person, but I have to say that riled me up quite a bit, and uh, you know, I came in and then I calmed him Mother 18.

Watching over their child’s psychosocial well-being was also important to parents and included monitoring how others responded to their child and protecting the child from inappropriate reactions or unwanted attention from others. Parents would try to avoid those situations that make their children feel uncomfortable. The role of the guard was hard to relinquish even for short periods and hence, resulted in parents staying close to their child within the home setting. Parents who were contemplating respite were reluctant to use it as they were uncertain if their child could be protected, resulting in parents missing out on social activities.

Similar to the other roles, while acting as a guard involved considerable work, it also helped to empower parents as reinforced by this husband as he spoke about his wife:

She’s was very timid, and now she’s like a lioness guarding her cub. You don’t want to mess with her. And I guess you find, you find an inner strength that you never knew existed, and cause he’s (referring to their child with complex care needs), this is all we know. Like I, I don’t know how many times we’ve heard, I don’t know how you guys can do that, you know. People really respect us and admire us for what we do, and it is just all we know. Father 7.

The advocate

As advocates for their children with complex care needs, parents stood up for them and made sure that their children’s needs were met and their interests and self-worth respected. As one mother stated:

‘C’ (child) has apraxia (short pause). This is ‘C’s’ road to walk and I can guide her along as best I can, but I can’t take it away. I have to make sure that she is everything that she can possibly be, but I have to protect her, and I have to advocate for her, and teach people how to treat her Mother 29.

Parents’ role as an advocate was closely connected to their roles of students and educators. Gaining the necessary knowledge and developing the courage to stand up for the needs of their child were part of the same process for many of these parents. For example, a mother of a school-age child explained:

You have to pull your boot straps up, and you’ve got to go online, and you’ve got to go to the library. You’ve got to do all this and then I had to learn to stand up for myself, which is huge. Not just myself, I had to learn to stand up for my kids. You have to become, um, what – their advocate. You have to learn, you know, that there’s nice ways to get things and to get what you want and then there’s a time when you have to stand up to a nurse and say, “Look, you have no right to treat me this way.” Mother 25.

Many parents believed that without them advocating for their children, necessary resources and services would not be available for their child. For example, families shared experiences of having to fight to access certain equipment that, from their perspectives, helped meet their children’s needs and ensure their child’s safety. This included parents standing up against their child’s health care providers in situations when they did not agree. One mother of a school-age child, in sharing her experience of not agreeing with her child’s health care providers’ assessment of a situation, stated:

And then we got into it with the hospital because we said, “Until you can tell me my kid’s safe, you’re not getting the machine (portable suctioning machine) back.” And they said, “Well there are other kids that need it.” I said, “Yeah, you tell me my kid’s safe, then you can have the machine back, but I’m not compromising my child.” Mother 19.

The parents had to advocate for their children in a variety of settings including educational and health settings, but also in public and community spaces. Parents reinforced that if they did not advocate on a daily basis, nothing would get done in relation to their child.

Parents assumed the role of the advocate even when taking on such a role was not comfortable or was not in keeping with the way they usually acted.

You know, like if you don’t try to go through the right channels or speak to the right people and, or the right resources, then, you know, then you can’t sit and complain or, you know, be frustrated… I’ve had to develop it (the role of the advocate) with ‘N’ (child with complex care needs). Um, like I have social anxiety, but with ‘N’ I try to push through and speak up. Mother 7.

Then there were those parents who felt secure advocating in the public realm. Such parents were able to share their stories through various forms of the media (e.g., radio, television, magazines) and by contacting political representatives, like this father:

Then we have the other things that exist in our society such as politics, and I think both of us have become more interested. We’ve actually even met with political figures and we’ve sent advocacy letters on things that relate to ‘D’ (child with complex care needs), but also I’ve become much more aware of the need to, to do these things. So, I’ve been sending letters to federal politicians about work-related things and other stuff. Father 14.

Though all parents in this study took on these seven roles throughout their children’s lives, there were instances when certain roles were more prominent than others. For example, when their child experienced an illness exacerbation requiring hospitalization, the role of the guard became prominent with parents, especially watching over their child’s health status and care by health care providers. Another example involved key transitional periods such as their child’s transition from pediatric to adult care services or their child entering the school system. During transitional periods, parents needed to be educators and advocates in order to ensure those new to their child understood the child and his/her needs and that the necessary services were in place to meet the child’s needs. While fathers and mothers took part in all the roles, mothers more often than fathers assumed the health care provider and case manager roles.

There’s just not enough

While parents acknowledged receiving a variety of services and supports, they nonetheless expressed that, for the most part, the services offered usually fell short of what was required to help them parent their child with complex care needs.

Well, the support system just isn’t there for us, for one family to cope with a special needs kid by themselves, just a mom and a dad. And even if you’ve got other kids that aren’t special needs it’s, you know… They’re just, there’s just not enough. They’re like, you know, fine, come in and put a ramp system. That doesn’t help you at all when you, when you need to get out of the house for a couple hours or you’re going to burn it down, and believe me, there are days like that. Father 6.

Parents expressed needing more of the services and supports currently offered to them and/or identified a number of services that they needed, but did not have access to. Table 2 describes the services and supports that parents most frequently identified that would help to ease the intense parenting.

Table 2 Identified services and supports Full size table

In some instances, parents reported relying on their own finances to get services and supports for their child (e.g., hiring a private speech therapist). Moreover, parents expressed that additional financial assistance would help them to meet the needs of their child. As well, parents expressed that services needed to be provided in a timelier manner. Parents described situations of waiting lengthy periods for a service and, in some instances the service was no longer needed when it was finally received. Parents reinforced the need for centralization or coordination of services offered to children with complex care needs. They expressed a need for more efficient systems that would better help parents meet the needs of their children. Quite often parents shared stories of a lack of coordination as this one father expressed:

There is duplication between that agency and the school division. So there’s a social worker at the school and a social worker at that agency. There’s an occupational therapist at the school, an occupational therapist at the agency. And I’m like “Well, why does there have to be a duplication?” The problem is that there’s lots of room for conflicts to arise because of the fact that you have dual roles occurring. Father 20.

It takes a toll on the health of parents

Parents experienced physical and mental health difficulties as a result of intense parenting and the multiple roles that they had to assume in meeting their child’s needs. The sleepless nights and the overall lack of sleep that are often reported by parents of an infant were among the prevailing concerns and complaints for parents in this study, extending well past the infant stage for many families. Parents of adolescent-aged children discussed how they needed to stay alert to monitor the breathing of the child, change diapers throughout the night, or attend to night-time cries of the child, or how they stayed awake due to worry about the child. A mother of an older adolescent child explained:

Well, it’s just he needs suction and then, you know, he wakes up and, or his diaper change…when you have a special needs son like that you can’t, you can’t really sleep, you know, unless there’s somebody there looking after him right. Because you don’t want to just sleep and then something might happen to him, you know. Mother 16.

This lack of sleep over the years took an overall toll on the health of the parents. Parents also experienced chronic physical ailments as reinforced by the following:

I have arthritis symptoms sometimes. I can’t open a jar from lifting her. And you put your back out and you’ve had your arms, you get physio and everything else, you get physical ailments. Like literally, I’m wearing out my joints. Mother 9.

Regardless of the child’s complex care needs, all parents expressed experiencing high levels of stress at one time or another. One mother stated:

Well it’s changed drastically. Um, uh you’re never prepared for that…. Um, it creates unbelievable amounts of stress, unbelievable amounts of anxiety. As a family it took a long time to get past that, “Hmm, am I going to wake up in the morning and she’s not going to be breathing anymore?” Mother 3.

Parents were aware that the intense parenting would need to continue on for their child into adulthood and hence, feeling stressed and anxious about the child’s future was a consistent theme through many interviews. This included constant worry about their children’s future financial safety as they grew and transitioned to adult care.

The stress related to parenting a child with complex care needs was also compounded by others stressors experienced by parents, including other health issues. As one parent outlined: