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Jigmi Wangdi
The Bhutan Cancer Society (BCS) launched yesterday Pamai Dongxing The (Parents’ Heart) support group provides psychosocial assistance to parents of children or adolescents with cancer, helping them prepare before travelling abroad for treatment.
The initiative to set up the support group was a unanimous decision of the organization’s core group of parents who had faced and overcome challenges while their children were receiving treatment in Kolkata.
Chimi Dema, who worked as a caregiver in Kolkata for a year, said a major problem parents face is the communication barrier with doctors.
“Most caregivers come from rural areas in western and eastern Bhutan and often do not speak English or Hindi. This language barrier leads to significant delays in treatment for patients,” said Chimi Dema.
Chimi Dema further noted that caregivers face various challenges, including accommodation difficulties, difficulty in obtaining blood units, and cumbersome procedures for multiple tests during treatment.
“The hostel in Kolkata operates on a first-come, first-served basis and has only 22 rooms. Therefore, waiters often have to look for alternative accommodation, which can be very expensive, especially as many do not have a stable source of income. Waiters receive a monthly stipend of around Ngultrum 7,500, which is barely enough to cover food and other necessities, let alone accommodation,” said Chimi Dema.
Besides the financial difficulties, Chimi Dema also highlighted the emotional strain on parents who suffer from the stress of knowing their children may not survive. She added that doctors in Kolkata often report treating cancer patients only when their disease is in the final stages, when treatment options are very limited.
These challenges often lead to extreme depression among parents, many of whom are not prepared to deal with such situations. Chimi Dema herself suffered from depression during this time.
“Most of the caregivers who accompany their children for treatment are mothers, many of whom lack formal education. This makes their situation even more difficult,” Chimi added.
She stressed that while providing psychological support to patients, caregivers also need similar help from counselors. Tshering Yuden has also faced similar challenges.
Tsering Yuden also faced significant challenges, and she noted that the difficulties were not limited to her time abroad.
“I had a hard time back home, especially during the pandemic when it was almost impossible to contact the doctors responsible for my child’s treatment. Other doctors also refused to meet with me, claiming that it was beyond their authority,” Tshering shared.
To prevent other parents from facing similar difficulties, Chimi and Tshering hope that parent support groups can effectively prepare and assist families of children with cancer.
“We never received any emotional support and were left to fend for ourselves. We want to make sure other parents don’t have to suffer the same way during such a difficult time,” the women shared.
Tshering Yuden plans to return to her village to raise awareness of the importance of timely medical intervention. “Many people in the village rely on rituals or sacrifices to seek medical help. I want to oppose this practice and ensure that the children receive timely treatment,” Tshering said.
BCS Executive Director Karma Tobgay emphasized the organization’s commitment to assisting patients. “We are committed to helping patients move through the treatment process efficiently. We ensure patients receive timely tests and help those who are unsure of what steps to take,” he said.
Kalma Tobgai added that the support group will play a key role in raising awareness and bringing together parents of young cancer patients, ensuring they receive emotional and psychosocial support from people like Chimi and Tsilin who have first-hand experience.
“We also plan to conduct outreach activities in four districts. We will visit ECCD centres in Punakha, Wangdue Phodrang, Dagana and Tsemgang as well as the Pontifical See to meet with parents and raise awareness about adolescent cancer,” said Karma Tobgay.
He also said BCS would produce pamphlets detailing common symptoms parents need to watch out for and develop comprehensive guidelines for parent support groups.
Most adolescent cancer cases reported to the BCS are leukemia, or blood cancers. The National Cancer Registry recorded a total of 58 cancer cases in children aged 0 to 14 years between 2019 and 2022, including 26 males and 32 females.
The initiative to set up the Parent Support Group was supported by Save the Children Bhutan and funded by the European Union.
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