Mrs Kang (left), the main caregiver of daughter En Ning (centre), who has Antley Bixler syndrome, has benefited from the support and respite care provided through the Caregiver Support Programme.

Established by KK Women’s and Children’s Hospital (KKH) in partnership with Temasek Foundation Cares in 2016, to strengthen the psychosocial support available to caregivers of children with chronic illnesses, the Temasek Foundation Cares – Caregiver Support Programme for Families with Chronically Ill Children on Long-term Home Care is making a difference in families’ lives.

“For chronically-ill children who require long-term medical home care, caregivers play a critical role in enabling the transition back into the home and community, and facilitating their daily care and activities of daily living,” says Dr Cristelle Chow, Director, Caregiver Support Programme and Consultant, General Paediatrics Service, KKH.

However, the demands of long term home care for chronically-ill children can have a debilitating impact on the psychological and emotional health of caregivers. A survey of 88 caregivers of children in the KKH Paediatric Home Care Programme between March 2015 and January 2016 found that 44.3 per cent had CES-D (Center for Epidemiologic Studies Depression) scores that suggested that they were at significant risk of clinical depression. The Family Functioning Summary Scores self-reported by the caregivers of these patients were also lower compared to published literature.

“As the health of caregivers has a direct impact on the health of patients, they can be said to be our ‘second patients’,” says Dr Chow. “The Caregiver Support Programme was born to strengthen the psychosocial support available to these caregivers of children with chronic illnesses, and introduce screening and intervention for those identified with moderate-to-high perceived stress levels and who are at risk of clinical depression.”

 

POSITIVE INTERIM INTERVENTION OUTCOMES

Two years on, the Caregiver Support Programme is showing positive interim intervention outcomes.

To date, the pilot programme has screened 326 caregivers from the KKH Paediatric Home Care Programme, of which 110 caregivers who were categorised as being at high or moderate risk according to their perceived stress and risk of depression, have accepted the intervention provided.

“The interventions help to provide caregivers with skills to improve their resilience, stress management and relationships with other family members. For caregivers who are home-bound due to their child’s high care needs, the medical social worker and respite nurse also provide a listening ear and a helping hand,” says Ms Maryani Bte Abdul Wahab, a Nurse Clinician with the Paediatric Home Care team.

Seventy per cent and 86 per cent of caregivers who received medical intervention comprising psychosocial counselling showed improvements in their perceived stress scale and patient health questionnaire scores respectively. Additionally, 40 per cent of caregivers who received intervention improved their Family Functioning Summary Score.

 

RALLYING A NETWORK AND COMMUNITY SUPPORT

Prior to piloting the programme, a survey and focus group sessions were conducted to identify key areas where timely attention and intervention were needed – namely, respite care for the child and help in managing caregivers’ physical and emotional stress.

“Based on these findings, we established a network of paediatric nurses from KKH, who are specially trained to manage complex care needs specific to children on long-term care in the home care setting,” says Dr Chow. “This enables caregivers to care for themselves, including having couple-time, simply having a haircut, or spending time with their other children.”

The programme has also developed a pedagogy and curriculum for a competency-based programme in respite care, training community providers to provide respite care services.

Adds Dr Chow, “For the continued and sustained expansion of caregiver support, it is vital for the model of caregiver respite to rally and include the community in supporting the child and family unit as a whole.”