Dear NeW-I, My Child Has a Chronic Illness…

“As a mother, I wished we could have exchanged places.”

In a single sentence, Noorlela Abdul Hamed sums up the years spent watching her son Irfan go through a childhood of tubes inserted into his body, medical tests, blood transfusions and eventually, the removal of his spleen at age six. 

This, as she also juggled financial difficulties coping with Irfan’s medical bills, work, and caring for her other children and family members. 

Now 18, Irfan was born with thalassemia major, a life-threatening blood disorder that leads to serious anemia. Severe cases can lead to organ damage, which can be fatal.

Positive and forward-looking by nature, Noorlela’s sunny demeanor belies the considerable challenges she had to navigate while caring for Irfan. “I have parents who stay together with me, then I have other children...the youngest who's having asthma as well, my step mom was having a stroke then my dad who was just a cancer survivor...A lot of things happened,” shares Noorlela, who goes by Lela.  

She adds: “Of course I don't want to see my son suffering. It’s very painful. [Irfan] needs blood [transfusions] for the entire of his life. Because he has no spleen now, he needs antibiotics until the end of his life.”

Caregivers, she notes, often do not know whom they can turn to and trust with their feelings. “Sometimes they keep it to themselves. You know, you think you can swallow alone but at the end of the day, you choke.” says Lela. 

It is this group of parents that NeW-I, a cyber counselling tool in the form of a mobile app, seeks to help. 

CAREGIVER EMOTIONS THROUGH A NEW EYE

Developed in Singapore by a team of researchers from Nanyang Technological University (NTU), NeW-I, or Narrative e-Writing Intervention, is currently being tested as a pilot funded by Temasek Foundation under its SMF Research Grant Programme.

Over four weeks, participants pen their thoughts in short writing exercises on the app, which are structured to help them reflect on their caregiving journey and process their emotions, with input from a counsellor.

Participants’ entries are compiled and edited into an illustrated digital “legacy book” at the end of the exercise, which serves as a memory of their thoughts, feelings and experiences of caring for their child.

Currently, the NeW-I team works with Cerebral Palsy Alliance Singapore, Club Rainbow (Singapore), KK Women’s and Children’s Hospital, Muscular Dystrophy Association (Singapore) and Rare Disorders Society (Singapore) to bring participants onboard the pilot.

According to the NeW-I team, typical challenges faced by parent-caregivers of children with chronic life-threatening illnesses include psychological distress and emotional pain regarding the diagnosis, feelings of loss and grief on a daily basis as they cope with their child’s deteriorating health, financial concerns and the struggle to dedicate time to their relationships with their spouses and family members. 

They may also unintentionally neglect their other healthy children, while frequent communication with healthcare teams may cause anxiety and distress if they do not feel sufficiently engaged in making care decisions for their child, shares Dr Oindrila Dutta, Co-investigator of the NeW-I research team. 

As Associate Professor Andy Ho, Principal Investigator of the research team, puts it, “The quality of care patients receive is only as good as the quality of health of their caregivers.” 

The app aims to provide psycho-social support and useful resources to parents, while giving them an opportunity to reflect on their journey — time they otherwise might not carve out for themselves amid the day-to-day demands of caregiving.

Through the pilot, the researchers are collecting data, including examining the design and feasibility of the app and monitoring outcomes. Outcomes of the pilot so far showed that after completing NeW-I, parents report an improvement in their quality of life, overall spiritual well-being, their inner sense of meaning and peace and feel more optimistic about the social support that is available to them. They also report reduction in their caregiver burden. 

The findings of the pilot could help inform potential larger-scale implementation of NeW-I in the future, thereby being available to, and supporting more parent-caregivers in Singapore.

Some 54 participants have enrolled and completed the pilot, among them Lela.

A LEGACY OF LOVE

Lela had found solace in writing a letter about her grief over unexpectedly losing her younger son Zikry a few years ago. 

The pain and shock of losing Zikry had been a powerful one. “I can't describe it in words but the nearest I can say it's like you are tearing your own skin and you are pouring salt on the broken skin,” says Lela. 

On hearing that Lela had found writing to be a good outlet for her feelings, a social worker from Club Rainbow encouraged her to write about Irfan in the NeW-I app, to document her experience as a caregiver to a child with a chronic and life-threatening condition. 

In writing about her years caring for Irfan, Lela focused on the positive moments — the positivity she has tried to instill in Irfan in dealing with his condition, the special moments they share together over meals and holidays, the  loving support of her husband and mother in managing the ups and downs of her journey. 

“I’ve always felt that every day is a special day. Spending time alone with him is important. Sometimes we do go out, spend our time together, like [we are] dating. All these important moments are very precious,” she says. 

The experience of writing on NeW-I was a cathartic one. “After I pour everything out, of course I feel more stronger. I feel like oh, I’ve been through all this.

“I can see that, I’m strong, and it really comes out as a beautiful story. And I really will keep [the legacy document] for the rest of my whole life,” says Lela. 

Although Irfan is now old enough to manage his health well, Lela has her moments of worry. “Yearly, Irfan must go through the MRI. So that’s also a very crucial point. They are looking for any change in size of the organs,” she explains. 

“That’s the worst fear. If he goes off before me, I can just be thankful for the precious moments that I have with him. He’s a good boy,” she says.

Pausing as she becomes emotional, she continues: “I think he has fight, strong enough to be where he is today. As a mother, I only can pray for the best.”

Having cared for Irfan all these years, she understands the emotional weight borne by parents like her, and urges parents to always seek a listening ear. “When you are at the stage of time, when you are having this problem, a lot of things will mess up your brain. But this app will help you to tone down,” she notes. 

Irfan, for his part, is proud of how Lela has raised him to come to terms with his condition. “There was one point of time I also realised I couldn't be the same as others even though I tried my hardest,” says Irfan, a polytechnic student.  

“My mum always motivates me, reminding me that even when people are given disabilities, they will also be given special strengths that other people don’t have,” he says. “I feel very appreciative of my mother, for putting all this effort just to take care of all of us. I feel very blessed to have her as my mum. 

Lela, reflecting on her journey, says the NeW-I app summarised everything “in a very beautiful manner”.

“Growing up with Irfan like this, I don’t find it as a burden. I feel maybe it colours my life beautifully, that I have experienced all sorts of things together with him,” she says. 

Irfan adds: “To parents who have children with such conditions, don’t give up on your children, because even though they are special in their own ways, they are still able to do great things in the future.”  

This story was funded in part by Temasek Foundation. Visit Our Promise page to find out how we maintain editorial integrity while balancing our needs as a non-profit.