While writing my PhD, I have immersed myself in the various models of care for children who have serious health conditions. Shuster and colleagues (2011) published an article titled ‘Children with health issues: The Future of Children’. They believe the care that parents provide to their children with serious health conditions, in their homes; can be termed ‘the shadow health care’, without which the formal child health care system would be unable to function. This article depicts what has become an expectation from health providers, that parents will care for their children no matter how complex their illnesses, treatments and care requirements.
There are many children who are now technology dependent with feeding pumps, suction machines, respiratory machines, oxygen and at times IV antibiotics. Their parents are also expected to administer medications that include anticonvulsants, pain relief, antibiotics along with a raft of other treatments such as physiotherapy and extensive exercise regimes. The high level of care parents provide could also be described as hospital care in the home. It is impossible to explain to others just how demanding and unrelenting this level of care is.
As I walk alongside families, providing symptom management to a child, or advocating for the child and parents at clinic appointments, I am aware of the incredibly high level of responsibility parents are holding. The knowledge, expertise and dedication to providing complex care that many parents now have cannot be underestimated.
While parents manage this care because they love their child and want them to be at home, it needs to be acknowledged that there is a high cost to this home care both personally and financially for families. The impact of this ‘hospital level care’ in the home is felt by the whole family, including the siblings and grandparents. Fatigue, sleep deprivation, and anxiety in parents, who are constantly the decision makers for their child’s needs, all arise from this intense level of care.
This blog is written with parents in mind, who have gone to extreme places within themselves to pull out the strength, courage and resiliency to keep doing the best they can for their children, mostly with very little support. I am constantly in awe of what parents manage on a day to day basis. The skill and expertise they have to care for their child deserves to be acknowledged and honoured.
As I continue this research, my goal is to raise awareness of the complexity of children’s health conditions, and the intensity of care that is increasingly being provided by their families. Shuster and colleagues have given a name for the high level of care now delivered by parents in the home and the expectation from society and health professionals. It is my hope that by giving a name to this ‘shadow health care’, the government and health sector will recognise the need to find ways to undergird care in the home with appropriate resources and support. At present, we are a long way from that.