Caregivers of chronically ill kids get relief

18 October 2018 | Clinical Care and Innovation 

​Ms Lee Seu Hong and her daughter Kang En Ning with KKH's assistant nurse clinician Selvi Thevathas and nurse clinician Maryani Abdul Wahab. Ms Lee stopped working in advertising to care for her daughter, who has Antley Bixler syndrome.PHOTO: LIANHE ZAOBAO

Those on pilot scheme, which started in 2016 and ends in March, report lower stress levels

Felicia Choo, The Straits Times 

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 and requires almost-constant care.

Ms Lee, 42, is the main caregiver of Kang En Ning and, a couple of years ago, it began to take its toll on her. She said: "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 in 2016, help came via a programme that gives psycho-social support to caregivers of chronically ill children with such conditions as cystic fibrosis, cerebral palsy or chronic heart and respiratory conditions.

Its aim is to improve the stress levels and mental health of primary caregivers of these children, who usually have limited mobility and depend on devices, such as mechanical ventilators and pacemakers, and tube feeding.

The initiative, piloted at KK Women's and Children's Hospital (KKH), not only provided Ms Lee with counselling, but nurses trained in respite care also meant she and her husband could take time off to relax.

Ms Lee and 109 other caregivers in the pilot, which started in September 2016 and will end next March, were initially found to have moderate to high perceived stress levels and were at risk of depression, said KKH yesterday.

The results after they joined the programme show 70 per cent feel less stressed and 86 per cent have a lower risk of depression.

Also, 40 per cent of the caregivers reported an improvement in their physical, emotional and cognitive functioning, as well as family relationships.

The initiative, called the Temasek Foundation Cares - Caregiver Support Programme for Families with Chronically Ill Children on Long-term Home Care, provides counselling by KKH's medical social workers and home-based respite care.

It also offers treatment by KKH's Women's Mental Wellness Service.

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

But 69 of them did not want to join the programme owing to a lack of time or because they do not feel comfortable having another person in their home, said Ms Serene Hong, senior medical social worker in KKH's Medical Social Work Department.

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

Temasek Foundation Cares, a non-profit philanthropic organisation, has committed $513,000 to screen caregivers and train KKH nurses in respite care, with 51 having done the programme so far.

KKH and Temasek Foundation Cares are in talks with community-based organisations to train more nurses to give such respite care and to develop a training programme.

Five nurses from social enterprise Jaga-Mehave since been trained.

The aim is to train at least 20 to 30 nurses, said Associate Professor Chan Yoke Hwee, adviser to KKH's Paediatric Home Care Programme and Caregiver Support Programme as well as chairman of KKH's Division of Medicine.

Ms Lee, who stopped working in advertising to care for her daughter, is sad the scheme will end soon.

"Without respite care, I don't know how caregivers like me have time for other things," she said.
 
SOURCE: THE STRAITS TIMES SINGAPORE PRESS HOLDINGS LIMITED. REPRODUCED WITH PERMISSION.


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