17 Oct 2018
Pilot caregiver support programme provides early intervention to caregivers of chronically-ill children

Interim outcomes reveal improvements in caregivers’ stress and depression scores, and Family Functioning Summary Score

17 October 2018, Singapore – To strengthen the psychosocial support available to caregivers of children with chronic illnesses, KK Women’s and Children’s Hospital (KKH), in partnership with Temasek Foundation Cares, started the Temasek Foundation Cares – Caregiver Support Programme for Families with Chronically Ill Children on Long-term Home Care in September 2016. The pilot programme aims 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.

A survey of 88 caregivers of children in the KKH Paediatric Home Care Programme1 between March 2015 and January 2016 found that 44.3 per cent of them had CES-D2 (Center for Epidemiologic Studies Depression) scores that suggested that they were at significant risk of clinical depression. The Family Functioning Summary Scores3 self-reported by the caregivers of these patients were also lower compared to published literature.

Interim intervention outcomes of the pilot programme

The Temasek Foundation Cares – Caregiver Support Programme for Families with Chronically Ill Children on Long-term Home Care has shown positive interim intervention outcomes:

  • Perceived Stress Scale (PSS) and Patient Health Questionnaire (PHQ-9) scores – 70 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. 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.
  • Family Functioning Summary Score – 40 per cent of caregivers who received intervention improved their Family Functioning Summary Score.

Associate Professor Chan Yoke Hwee, Advisor, Paediatric Home Care Programme and Caregiver Support Programme and Chairman, Division of Medicine, KK Women’s and Children’s Hospital said, "Based on the survey and focus group sessions conducted prior to the pilot programme, the KKH Paediatric Home Care Programme identified key areas of support, namely, respite care for the child and help in managing caregivers’ physical and emotional stress, as areas that required timely attention and intervention. With this Caregiver Support Programme, we hope to address these key areas of need, with the aim to support caregivers’ mental health and build caregiver resilience."

Ms Woon Saet Nyoon, Chief Executive, Temasek Foundation Cares shared, "Family caregivers of children with chronic illnesses have to provide not only physical specialised care but also emotional care and support. While caregiving in the home environment may be better suited for the patient and the family, the constant caregiving can be draining, challenging and overwhelming. 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."

To date, the pilot programme has screened 326 caregivers from KKH’s Home Care Programme. The caregivers were categorised into three tiers (high, moderate and low risk groups) according to their perceived stress and mental health risks. Among the group of caregivers screened, 110 caregivers who were categorised into the high and moderate risk groups have accepted the intervention provided.

Enabling intervention for at-risk caregivers

Interventions offered include mental wellness intervention by KKH’s Women’s Mental Wellness Service under the Department of Psychological Medicine, or psychosocial counselling by the hospital’s medical social workers, as well as home-based respite care. The mental wellness intervention and psychosocial counselling sessions focus on issues identified to be a source of stress which are in addition to the stress of caregiving. These can include marital stress or family dynamics.

Besides identifying caregivers who are suffering from stress and at risk of depression, caregivers are provided with support intervention in the form of home-based respite by Respite Nurses. These nurses are specially trained to manage complex care needs specific to children on long term care in the home care setting. The programme has since recruited and trained 51 Respite Nurses. The programme aims to establish a network of paediatric nurses from KKH to provide respite care services, and to develop a pedagogy and curriculum for a competency-based training programme that can extend beyond the hospital, involving the training of community providers.

Temasek Foundation Cares has committed $513,000 to support this programme over 2.5 years.

1 KKH’s Paediatric Home Care Programme helps to support children with critical illnesses such as cystic fibrosis, cerebral palsy or chronic heart and respiratory conditions. They usually have limited mobility and depend on mechanical apparatus to sustain life including mechanical ventilators and pacemakers; tube feeding or long-term parenteral nutrition; as well as stoma care and urinary catheterisation.

2 The CESD-R (Center for Epidemiologic Studies Depression Scale Revised) is a self-reported screening test that measures severity of depressive symptoms.

3 The Family Functioning Summary Score is measured using the PedsQL™ Family Impact Module designed to measure the impact of paediatric chronic health conditions on parents and the family. The PedsQL™ Family Impact Module measures parents’ physical, emotional, social, and cognitive functioning, communication,

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