Feeling more at home in hospital

2009-06-04 00:00

“THIS is an NGO whose time has come,” says Yvonne Spain. The NGO is Thokomala Nathi, Zulu for “be welcome” or “be at home with us”.

“It’s to help realise a vision of Dr Neil McKerrow’s,” says Spain, former director of Cindi, the Children in Distress Network. “To set up an NGO in the children’s wards at Greys, Northdale and Edendale hospitals in order to enhance the experience of children in hospital wards. Children in hospital often come from rural areas in trauma, plucked from all that is familiar, and hospitals can be scary places.”

McKerrow recalls how attitudes towards children in hospitals changed in the mid-sixties as the result of the death of a three-year-old girl named Dawn who had been admitted to a British hospital for a tonsillectomy. There were complications during the operation and the child bled heavily, plus she contracted pneumonia. At no point was the mother allowed contact with her child who cried constantly.

In a letter the mother stated: “If I had been with her it might have had a different ending because she wouldn’t have needed to sob her heart out if I had been by her side, and if she hadn’t cried she wouldn’t have lost so much blood, and if she hadn’t lost the blood she would have had more strength to fight the pneumonia.” This simple statement was a wake-up call for the medical profession.

“That letter gave rise to a change in approach to children in hospitals,” says McKerrow. “There was acknowledgement that their needs were different from adults. We recognise children have very specific requirements. And that is what we are trying to do with Thokomala Nathi.”

Thokomali Nathi intends developing four key areas. Firstly, creating a child-friendly environment in the hospital. This includes bright decoration, pictures on the walls, and play areas inside and outside the hospitals. It also includes accommodation for mothers, so that they can be close to their children.

Secondly, providing an appropriate emotional and intellectual environment. “When children come to hospital at the moment they get a bed and pyjamas and that’s it,” says McKerrow. “Now we want to give them a face cloth — something that acts as a security blanket. We’ve come up with the idea of the admission pack. These include soap, toothpaste, a face cloth and a soft toy — and it’s theirs to keep. Thanks to the regional Rotary Anns, we have already received thousands of packs that will ease the transition from home to an unfriendly environment.”

Already volunteer students from the university’s psychology department have been giving one hour a week to work with child patients. Activities might involve storytelling, play therapy, art therapy, or help with homework. There were initially 116 volunteers and now the opportunity has been extended to other university departments.

The effect of this intervention was monitored in the burns unit and it was found that the pain tolerance when dressings were changed improved dramatically over a period of six weeks. “All because of that one hour of focused interaction,” says McKerrow.

Thirdly, there will be support for mothers. “Mothers are often distracted and worried about other children at home,” says McKerrow. “It is a tense time for mothers.”

Thokomala Nathi will also provide psychological support and involve the mothers in the recovery of their children. They will also be guided on how to claim the various grants to which they are entitled. And where necessary they will be able to stay with their children.

“We have worked on the basis that there will be one mother’s bed for every two children in beds,” says McKerrow.

Whether a mother can be accommodated will depend on the needs of the child. “If the child is being breast-fed or is in ICU then the mother has to be there,” says McKerrow. “But if a child is in for six weeks with a broken leg that would be a ‘no’, unfortunately.”

It’s also “no” to fathers, as there is a problem with resources. Currently, accomodation is dormitory-style and the Health Department cannot afford stand-alone units.

Finally, there is a need to support professional health workers to do their core functions. “That means calling on volunteer support to do filing and administrative work, so that nurses are not tied up,” says McKerrow, “and secondly, we must work to reduce compassion fatigue.”

McKerrow cites the case of a paediatric resident in the United States who in a period of four years witnessed nine deaths. A miniscule amount compared with what doctors and nurses have to deal with in this country. “Conditions for medical staff here are so different,” says McKerrow. “Compassion fatigue is a big problem.

“With Thokomala Nathi, we have to come up with model for all hospitals,” says McKerrow. “Creating a nice environment and providing emotional support.”

Spain’s role will be to help get Thokomala Nathi off the ground, drawing on her 10 years’ experience as director of Cindi, the highly successful Children in Distress Network, which grew from a small organisation to an NGO with an international reputation.

“To achieve our vision we have to work with partnerships,” says Spain. “Primarily this is a partnership of the Department of Health with civil society; then we see Thokomala Nathi working with existing NGOs , the work of which resonates with Neil’s vision. Then there is the need for corporate partnerships — for the donation of clothes, toys and equipment.”

“I am currently working on the nuts and bolts, registering Thokomala Nathi as an NPO, looking for a logo and so on,” she says. “A huge task will be how to go about selecting and screening volunteers. We will have to find a way of getting volunteers, doing reference checks and putting a volunteer protocol in place.”

Spain visited the Friends of the Red Cross Children’s Hospital in Cape Town and learnt that potential volunteers visit the children’s wards to see if they can handle potentially upsetting situations. Some find they cannot but still want to help — either knitting toys, baking cakes or sorting out paperwork.

“Thokomala Nathi will be volunteer driven,” says Spain, “and we will need people from all areas of the city — retired teachers, nurses and people to make birthday cakes. We really want to capture community energy for the long-term — children will always be coming to hospital.”

• You can indicate your interest in volunteering and keep up with Thokomala Nathi’s progress by checking out its page at www.jivemedia.co.za

There are prizes to be won in the competition to design a logo for Thokomala Nathi/Be at home with us. See the advertisement on page 11 for details.

THE aim of Thokomala Nathi is to complement the Department of Health and support holistic care within the children’s wards, while being independent of the hospitals, and it finds its roots in the Millennium Development Goals, says Neil McKerrow, chief specialist, head of paediatrics, Area 2, KwaZulu-Natal. “Two of these involve maternal and child mortality — the goal is to reduce worldwide maternal and child mortality by 50% by 2015.”

South Africa is one of 12 countries where child mortality figures are getting worse rather than better, says McKerrow. “So our focus has been on getting children to survive.”

The track record in KwaZulu-Natal is not good. “A hunder-and-sixteen children die out of a 1 000 before they reach the age of five in this province,” says McKerrow. In other provinces the ratio is 65 to 70 out of a 1 000.

In 2004, a study was done in Pietermaritzburg of child mortality rates in hospital admissions. “It was identified that if admitted to Edendale hospital there was a 14,8% chance of not surviving,” says McKerrow. “The figure for Greys was 11,6%. Then we looked at why this was the case and what needed to be done.”

Four key factors were identified if the situation was to improve: stop rotating staff, thus allowing them to remain in place to develop skills and build up institutional memory, address the lack of infrastructure and equipment, improve clinical record keeping and develop standard treatment guidelines.

Three of these factors were addressed, those not involving cost. Which ruled out the infrastructural needs. Even so the effect was dramatic. Mortality dropped to seven percent at Greys and five percent at Edendale. “Just doing these things had a phenomenal impact,” says McKerrow. “Having achieved that shift beyond just keeping children alive, we could start to address the experience children have in hospital.”

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