A kind of debilitating panic can grip parents when one of their children is hospitalised. They move into an unknown world of strange new terminology and frightening procedures, where they have to hand over the care of their child to people they have never met and can barely understand. At this stage we are all familiar with the unacceptable pressure under which hospital staff work, but the resulting time constraints can mean communication with parents is lacking. Desperate to see them well again, parents relinquish all control over their child's welfare, and stumble forward, confused and even frightened.
However, research conducted in Britain and the US shows that the more parents actively participate in their children's healthcare, the better their children do. This has also been recognised in Ireland, where increasingly parents are both facilitated and encouraged to become involved in children's health care.
"It is now widely accepted that separating children, particularly pre-school children, from their families during illness is unhelpful," says Liz Dunbar, nurse tutor at Temple Street Children's Hospital, Dublin. "To promote maximum recovery it is vital to include the parents as partners in their children's care." Where possible, parents are encouraged to stay with their children in hospital these days. "Ideally, at least one parent should be with the child over the 24-hour period, especially with pre-school children who are most at risk from the adverse psychological effects of hospitalisation," Dunbar says. "We have beds where parents can sleep, though they are located in a wing some distance from the wards, which is not ideal. Parents can also use the staff canteen, and we have open visiting hours for parents, grandparents and siblings. "What we are trying to foster is a shift away from regarding parents as a group of people dependent on experts, towards valuing the parents' expertise regarding their child, which they can share with the medical staff." Information on individual children can help medical staff with diagnoses and treatment. "Increasingly our aim is to enable the family to meet the children's healthcare needs," Dunbar says. "We strive to inform the parents and to educate them about the illness and the various treatment options so that they can participate in the decision-making process.
"It is very important that parents can make a decision on how their children are treated. The approach we tend to take more and more is that parents' views should be listened to, respected and valued, so that the care of the child is based on a consensus." This is particularly important if a child is suffering from a long-term illness. According to Dunbar, chronic illnesses such as asthma and diabetes affect between 10 and 12 per cent of all children globally. "It is more beneficial for children suffering chronic illness to go home if they can, so there is minimum disruption of their lives," she says. In these situations, the more the parent can actually take a hands-on approach to the illness, the better. "Not all parents want to be involved in their children's treatment, and that is something we would totally respect. But if a parent is happy to share the care in this way, we show them how to do various procedures. "Time and again research shows that children do better if their parents feel they have some control. Where parents understand their child's illness and feel involved in the treatment, the prognosis for the child is actually enhanced."
The empowerment of parents with respect to their children's healthcare is part of a general societal trend towards "self-care". "Increasingly people demand high-quality services, and when it comes to healthcare they want provision which is meaningful to them," says Dunbar. "The move towards self-care reflects a mental shift away from seeing patients as passive recipients towards their being people with important opinions. "It is about facilitating people to better health rather than curing a disease. In this context, we work with parents, facilitating them to develop skills so that they in turn can help their children."
THE PHILOSOPHY of healthcare promoted by Dunbar and her colleagues is "child- and family-centred care", she says. "We would see the role of the nurse being realigned from one of a do-er to that of a supporter and educator. "Nurses play a pivotal role when it comes to empowering parents. They have the most contact with the child and family during the hospital stay and are in an optimum position to establish a rapport. As roles shift and parents participate more, children with chronic illness are going home to the community.
"I am now looking forward to the advent of community-based, specially trained sick-children's nurses who link the community care to the hospital care, with the individual needs of each child being the issue that informs decision-making. "This is where parent play their most vital role. They know their child best, and we could do nothing better for children than to acknowledge them as invaluable partners in care."
