Support programme giving caregivers of chronically ill children a welcome lift

Ms Lee Seu Hong and her six-year-old daughter, Kang En Ning, have benefited from the programme, which has given Ms Lee and her husband time to relax.
Ms Lee Seu Hong and her six-year-old daughter, Kang En Ning, have benefited from the programme, which has given Ms Lee and her husband time to relax.PHOTO: LIANHE ZAOBAO

SINGAPORE - A pilot scheme to help caregivers of chronically ill children has been life-changing for mum Lee Seu Hong and her six-year-old daughter, who was born with a rare genetic disorder that requires near-constant care.

Ms Lee, 42, has been the main caregiver for Kang En Ning and it began to take its toll. "I felt very stressed and tired because my schedule revolves around her."

En Ning has Antley Bixler syndrome, which is characterised by malformations of the head and face, as well as other skeletal abnormalities.

The affliction placed a huge burden on the family but help arrived in 2016 through a programme that gives psycho-social support to caregivers of such chronically ill kids.

The initiative piloted by KK Women's and Children's Hospital (KKH) not only gave Ms Lee counselling, but nurses trained in respite care also gave her and her husband time off to relax.

KKH told a briefing on Wednesday (Oct 17) that Ms Lee and 109 other caregivers who were found to have moderate to high perceived stress levels and were at risk of depression have received help under the pilot programme, which started in September 2016 and ends in March next year.

The scheme aims to reduce the stress level and improve the mental health of primary caregivers of children who have conditions like cystic fibrosis, cerebral palsy or chronic heart and respiratory conditions, said Associate Professor Chan Yoke Hwee, adviser to the Paediatric Home Care Programme and Caregiver Support Programme at KKH.

These children usually have limited mobility and depend on devices like mechanical ventilators and pacemakers, tube feeding and urinary catheterisation.

Results have been encouraging - 70 per cent of the caregivers in the programme felt less stressed and 86 per cent were less at risk of depression.

In addition, 40 per cent of caregivers reported an improvement in their physical, emotional and cognitive functioning.

The programme - it's called the Temasek Foundation Cares-Caregiver Support Programme for Families with Chronically Ill Children on Long-term Home Care - was prompted by an earlier survey conducted by KKH from March 2015 to January 2016.

This found that 44.3 per cent of the 88 caregivers surveyed were significantly at risk of becoming depressed.

Besides counselling by the hospital's medical social workers and home-based respite care, the programme also offers treatment by KKH's Women's Mental Wellness Service under the Department of Psychological Medicine.

So far, 326 caregivers from KKH's Home Care Programme have been screened, with 179 assessed to have moderate and high risk of stress.

But 69 of them decided not to join the programme due to a lack of time or not feeling comfortable having another person in their home, said Ms Serene Hong, a senior medical social worker from the hospital's Medical Social Work Department.

The other 147 caregivers assessed were at low risk of stress and did not require intervention.

The programme is funded by Temasek Foundation Cares, a non-profit philanthropic organisation.

It has committed $513,000 to screen caregivers and train KKH nurses in respite care, with 51 having gone through the programme so far.

KKH and Temasek Foundation Cares are in talks with community-based organisations to train more nurses beyond the hospital setting to provide respite care for caregivers of children suffering from critical illnesses, as well as develop a training programme, said Prof Chan.

So far, five nurses from Jaga-Me, a social enterprise which links people receiving care at home with nurses, doctors and medical escorts, have been trained.

The aim is to train at least 20 to 30 nurses, said Prof Chan, who is also chairman of KKH's Division of Medicine.

Ms Lee, who stopped working in the advertising industry to take care of her daughter, is sad that the scheme will be ending soon.

"I wish to continue on with the programme," she said. "Without respite care, I don't know how caregivers like me have time to do other things."