Easing the psychological burden on families of patients with chronic conditions
Published on 11 December 2024
The Child and Adolescent Family Support Services (CAFSS) programme at the National University Hospital (NUH) is a unique initiative in Singapore that provides psychosocial support to families of patients with chronic conditions.
When four-year-old Aafiyah (not her real name) was diagnosed with a chronic kidney condition in 2022, her mother, Mdm Adilah, initially found it difficult to come to terms with the news.
Overwhelmed by the fear of losing Aafiyah – who has Down Syndrome – Mdm Adilah experienced severe anxiety, which triggered her depression and even led her to have suicidal thoughts.
The emotional turmoil she faced during that period also strained her relationship with her two other young daughters, aged six and seven. One started throwing prolonged tantrums, while the other sought constant attention from Mdm Adilah, who struggled to juggle caring for their needs, managing Aafiyah’s condition, and coping with her own emotions.
As such, when Mdm Adilah learned about NUH’s CAFSS programme – an initiative providing specialised psychosocial support to families of young patients with chronic illnesses – she decided to enrol her family.
The programme, made possible through a $100,000 gift from EtonHouse Community Fund (ECF), is Singapore’s first hospital service that extends subsidised psychological care to both parents and siblings, and aims to strengthen family resilience. The ECF funding covers 80 per cent of each therapy session, and requires beneficiaries to co-pay only 20 per cent of the charges.
“The psychological burden of caregiving for a child with chronic illness is great, impacting not only their parents who are often the primary caregivers but other family members indirectly involved in the care of the ill child, such as their siblings,” said Ms Ng Siau Hwei, Head of Psychology, Department of Paediatrics, Khoo Teck Puat - National University Children’s Medical Institute (KTP-NUCMI), NUH.
“We have also noticed an increasing and worrying trend where family members share that their spouse or other child might need additional support. This aligns with our clinical experience and is supported by research, which shows that siblings of chronically ill children experience higher rates of overall psychosocial problems.”
As part of the programme, Mdm Adilah and her family participated in therapy sessions over the course of 11 months in 2023 to address their psychosocial struggles. These sessions, which included art and play therapy, helped Mdm Adilah cope better with her anxiety and negative thoughts, while also providing her with insights into managing her daughters’ needs more effectively.
Crucially, it gave Mdm Adilah an opportunity to bond with her children and strengthen their relationships with one another. Her daughters also developed better emotional awareness and regulation, and now express their feelings and frustrations more effectively.
“As parents we learnt when to intervene - not only during that tantrum, but outside of it, how to help her build the skills to manage her emotions. There was a gap between me and my second child, but after the sessions, we grew closer, and we built our relationship back,” Mdm Adilah shared. “The skills we learnt during those sessions, we brought it back with us and we continue to practice them after the programme.”
Since the CAFSS programme began in 2022, over 148 therapy sessions have been conducted, supporting nine families through individual and group therapies.
According to Ms Ng, the lead of CAFSS, results from the first year of the programme showed that “parents and siblings reported feeling less anxious, indicating an improved ability to manage anxious feelings. Participants also noted improvements in their capacity to cope with and respond to changes in family dynamics.”
With the programme running until 2026, the CAFSS team aims to recruit 12 more families and has expanded its reach to include families of adult patients with chronic illnesses, particularly those whose children struggle to cope with their parents’ diagnosis.
“Currently, the needs of impacted family members are addressed indirectly through referrals to community support networks, such as Family Service Centres or community counselling centres,” Ms Ng said.
“As greater coordination and collaboration can enhance this system of care, CAFSS hopes to bridge this gap by providing direct access to subsidised, family-centred psychosocial care within a public hospital setting.
“Given the lack of local studies on such care models in Singapore, we hope the programme will offer valuable insights into supporting families with a chronically ill patient.”
In consultation with Ms Ng Siau Hwei, Head of Psychology, Department of Paediatrics, KTP-NUCMI, NUH.