In a homely living room, little Janish is sound asleep in the playpen, despite his older sister Lavaniya’s cheerful chatter with visitors.

“Today’s weather is good. It’s cooling, so he is sleeping well,” said Mdm Yogasvari, Janish’s mother. “But sometimes at night… the naughty boy!” The smile on her face betrays her pride for her boy, who is aged two.

She certainly can be proud of Janish. At a tender age, this little fighter has already surmounted many odds, including surgeries to repair a congenital heart condition, correct a foot drop, and create a gastrostomy.

The stresses of caring

Yogasvari is a homemaker and the main caregiver of Janish and Lavaniya, with some help from her mother-in-law who lives next door.

Fetching a child to and from preschool, bathing, preparing milk and food for two young children – these may sound like typical chores of any homemaker. But caring for two young children can be stressful, especially so when one child has chronic medical conditions – Janish requires the help of machines to breathe when he sleeps due to sleep apnoea, which is common among children with Down Syndrome. His immune system is also weak, so if someone in the family falls sick, he is usually susceptible to catching the bug.

“When Janish falls ill, he would have difficulty breathing and his colour would change,” Yogasvari explained. “At first, it was scary. I didn’t know what to do. So I would call my husband.” That added to the stress of both parents, as Mr Novendran, the sole breadwinner who works as a zookeeper, was also at a loss as to how to advise his wife. The stress increases when the medical situations happen in the middle of the night. This could be anything ranging from a fever, breathing difficulties or Janish pulling out his nasogastric tube.

Novendran recounted in frustration, “My wife would ask me what to do, and I would ask her back the same question!”

Timely intervention

KK Women’s and Children’s Hospital (KKH), where Janish was born, provides home care services to caregivers of children born with chronic conditions. It was through this service that Yogasvari met Nurse Clinician Maryani Abdul Wahab. Sensing the stress that Yogasvari faced as a caregiver, Maryani referred the mother to the Temasek Foundation – Caregiver Support Programme for Families with Chronically Ill Children on Long-term Home Care.

Piloted in 2016, the programme aimed to improve the stress level and mental health of caregivers who are screened to have moderate to high perceived stress levels and who are at risk of clinical depression.

Ms Woon Saet Nyoon, Chief Executive, Temasek Foundation shared, “Family caregivers of children with chronic illnesses have to provide not only physical specialised care but also emotional care and support. The demands of long term care for these children can affect the psychological and emotional health of the caregivers. This pilot caregiving programme helps in three key areas: screening and support for caregivers; respite care from trained nurses; and equipping more paediatric nurses in this specialised homecare skill.”

Under the programme, KKH Assistant Nurse Clinician Selvi Thevathas was the respite care nurse assigned to Janish’s family. Incidentally, Selvi was one of the nurses caring for Janish in the KKH ward that Janish was in so she was a familiar presence to the family.

In her first encounter with the family as a respite nurse, Selvi observed that “Mdm Yogasvari tended to get anxious, stressed and was at times unsure as to how she was to prioritise the care needs of her child. Not being able to render the appropriate care for her child brought about a sense of helplessness.”

Mental Wellness Support

Providing mental wellness or psychosocial support for caregivers is a key aspect of the programme. For caregivers at risk of stress and/or clinical depression, they are referred for mental wellness intervention at KKH. They could also receive psychosocial counselling by medical social workers if necessary, while respite nurses who have built rapport with these caregivers also chip in to support.

For Selvi, she believes it is important to put herself in the shoes of the caregiver, and to motivate her to view the situation positively. “Initially, Mdm Yogasvari found it difficult to accept her child’s diagnosis,” she shared. “But progressively, I managed to change her perception by asking her to look at things differently, like by listing all the interventions and support that can improve her child’s quality of life. I also referred her to the Down Syndrome Association, where she was able to learn more about her child’s condition.”

Time-out

Besides mental health support, a much-appreciated feature of the programme is the provision of home-based respite care. Over a period of six months, caregivers enrolled in the programme received a total of three respite sessions provided bi-monthly.

“Even though each respite session lasts four hours, it means a lot to the caregiver,” Selvi explained. “There is a certain level of care required for home care patients who are dependent on mechanical apparatus to sustain life that may lead to caregiver exhaustion and burnout. Through the respite care, the caregivers felt that they are well supported even though they are at home. It provides a different dimension of care.”

Yogasvari, too, utilised the respite care service for Janish. With Selvi taking over care duties for Janish, Yogasvari used the time-out to bring her mother-in-law for medical appointments. Even though it is not a break for herself, it is important to her and it frees up her husband’s annual leave for other family emergencies.

Prior to the respite care sessions, Yogasvari prepared a plan for Selvi, which details when to administer Janish’s medication, his feeding schedule as well as what Selvi needs to look out for when performing suctioning for him. Unlike working in the wards, as a respite nurse, Selvi would modify or tailor the care provided to families based on their care needs in the home setting as well as each family’s coping mechanisms. For Janish, this meant making sure to keep a look out for cough or possible vomiting, as Janish was then on a feeding tube.

“Through this programme and the respite sessions, we are able to support caregivers’ mental health and build caregiver resilience.”

‘Like Family’

Over the two-year pilot, the programme had screened over 380 caregivers, and provided more than 120 of them with mental wellness, psychosocial and/or respite care support.

83 per cent of caregivers who received medical intervention comprising psychosocial counselling showed improvements in their Perceived Stress Scale (PSS) and Patient Health Questionnaire (PHQ-9) scores respectively. The PSS is a stress assessment instrument while the PHQ-9 is a multi-purpose instrument for screening, diagnosing, monitoring and measuring the severity of depression.

Yogasvari and Novendran are ever grateful for the support that KKH nurses Maryani and Selvi (pictured above left) has given to them, from providing respite care to answering their questions about Janish’s medical conditions or being a listening ear.

“These two are my best support!” Yogasvari exclaimed. “They are like family.” As Janish grows and becomes stronger, Novendran is ready for him to embark on a new learning journey. Recognising the importance of early intervention, he has enrolled Janish in an Early Intervention Programme For Infants and Children (EIPIC). “We can bathe him and feed him, but nobody is teaching him at home. Rather than putting him in and out of the playpen, I want him to get speech therapy, everything… so that he can learn,” he said. This is Yogasvari’s dream for her little fighter too. “I want him to be strong, and healthier. Then he can walk and be a strong boy.”