A dramatic shift in care responsibilities for families occurs with the corresponding increase in numbers of children with complex care needs living at home. Families do report positive impacts with this shift; indeed, parents in our study noted a number of rewards, which we will report on in a separate article. But it is also evident that the burden of care increases greatly as responsibilities extend beyond the usual care [9, 24–26]. Our study contributes to the existing research by further expanding on the work that is required of parents raising children with complex care needs from not only the perspectives of mothers, but also fathers. In contrast to Hays’ work on intense mothering that specifies intensive strategies of childrearing are the responsibility of mothers [27], our study revealed that participating fathers also shared the responsibilities. Mothers as well as fathers provided a picture of intense parenting that worked best within a tag team scenario in which parents take turns carrying out the necessary duties related to caring for their child with complex care needs [15]. Our finding could be explained by the fact that Hays did not focus on parents of children with complex care needs. Parents in our study discussed how intense parenting required roles that ranged from being a student to becoming an educator, and from acting as a guard to taking on roles of health care providers for their child. They explained that they often experienced derailed parenting involving misplaced milestones in their child’s development. Moreover, this study adds to our understanding of the impacts intense parenting has on parents, as well as discusses the resources that may support parents in their efforts to provide complex care for their children.

More than a nurse

Parents in this study, as reported in previous research, assumed the role of the nurse [10, 11]. However, this was not the only role they assumed. Parents were expected to take on highly technical and/or specialized procedures normally expected of other health care professionals [28]. In order to ensure the health and well-being of their children, parents had to assume both the role of affectionate parent and professional caregiver. These roles may contradict each other due to the intrusive nature of the tasks that parents must perform [24, 29]. Finding a balance between the paradoxical roles can be a challenge in itself.

With the transfer of care to the home setting, parents of children with complex care needs have to take on a major role in the coordination and planning of their child’s care [28]. Research has revealed that families of children with complex care needs have been willing to take on the case management role, despite its added exhaustion, as it gives them a sense of control [14, 29]. Families have reported, however, that coordination and planning is sometimes extreme and incredibly burdensome, as was the case for the parents in this study [14, 29]. Parents in our study experienced the case manager role as intense, continuous, and energy consuming.

The high demands of caring for children with complex care needs resulted in parents becoming life-long learners. Parents in this study searched out information that would help them care for their children. Parents in other studies have also described themselves as “hungry for information” in a number of areas, including available services, financial counseling, and their child’s treatment [2, 14, 30]. The parents in this study engaged in the learning process that was at times stressful. In particular, they had to learn ways to maneuver numerous systems to ensure the individual needs and capabilities of their child were attended to. The learning process of parents was characterized by high emotional intensity due to the necessity to make informed decisions about their child’s health and well-being. Nonetheless, in addition to contributing to the parents’ ability to cope and manage their child’s care, research reinforces that acquiring information and new skills has been strongly linked with empowerment, as it increases parents’ confidence in providing necessary care [7, 29].

In addition to acquiring knowledge, parents had to ascertain what approaches would best meet the needs of their children. While they were given tools and resources, they still had to figure out ways to use them properly and effectively. The detective work became even more complex and difficult for parents who had trouble understanding their child’s behaviours.

Parents often know their child best because they are the primary caregivers and have an intimate relationship with them. Therefore, parents as teachers became a key source of information about their child. For the parents in this study, becoming a teacher to professionals, extended family, friends, the wider community, and health care professionals not only helped parents become a voice for their child, but also empowered them and other families in similar circumstances. Considering parents are the primary care providers and play key roles in the development of their children, it is important for professionals from the variety of systems to collaborate and share information with parents [3, 7, 30].

In the role of the guard, parents in this study discussed watching over their children to ensure their safety. While watching over their child and being present also helps create a trusting relationship between the parents and the child, it nonetheless involves parents missing out on relationships with family and friends. Other studies have shown that parents often temporarily restrict their social spheres and reject interactions with others during this time period of being there when nothing else can be done, in an attempt to further protect their child from physical danger, emotional stress, hostility, or invasive curiosity of onlookers [9, 31]. This occurred both in the hospital and home setting, and often persists until the family feels confident in managing the care treatment, and their child is outside a self-defined threshold of medical or emotional fragility. Even after parents become confident in the caregiving, however, parents in our study continued to assume the role of the guard.

Dealing with the diagnosis of illness or disability can be a struggle for parents. Parents must come to accept the realities of the changes that will occur. In doing so, many parents come to understand the importance of being an advocate for their child with complex care needs [31, 32], as was the case for parents in this study. In the process of advocating for their children, parents became assertive, working hard to get their children the services needed and making sure they are accepted in their society [31]. Parents shared that they had to develop courage and learn to stand up for their child in difficult situations. For example, parents discussed having to confront the staff at a child’s school or nurses at the hospital regarding treatment of their child that they considered unacceptable. As noted by Pohlman, advocating for their child with complex care needs can at times be difficult for parents as they may experience an imbalance of power between themselves and health care professionals [33].