Jigmi Wangdi

The Bhutan Cancer Society (BCS) yesterday launched the Phamai Doonghing (Parents’ Heart) support group to offer psychosocial assistance and prepare parents of children or adolescents with cancer before they travel abroad for treatment.

The initiative to establish the support group was a unanimous decision made by the organisation’s core parents’ group. The members of this group are parents who have faced and overcome challenges while attending to their children’s treatment in Calcutta.

Chimi Dema, who spent a year in Calcutta as an attendant, shared that a significant problem parents encounter is the communication barrier with doctors.

“Most of the attendants come from rural areas in western and eastern Bhutan and often do not speak English or Hindi. This language barrier creates significant delays in patient treatment,” Chimi Dema said.

Chimi Dema further noted that the attendants face various challenges, including difficulties with accommodation, access to blood units, and the cumbersome process of undergoing multiple checkups during treatment.

“The guesthouse in Calcutta operates on a first-come, first-served basis and has only 22 units. As a result, attendants often need to find alternative accommodation, which can be very costly, especially since many do not have a stable source of income. Attendants receive a monthly allowance of around Nu 7,500, which is barely sufficient to cover food and other necessities, let alone accommodation,” Chimi Dema said.

In addition to financial difficulties, Chimi Dema highlighted the emotional strain on parents, who endure the stress of knowing their child may not survive. She added that doctors in Calcutta frequently report receiving cancer patients only when the disease is in its final stages, at which point treatment options are severely limited.

These challenges often lead to severe emotional distress among parents, many of whom are unprepared to cope with such situations. Chimi Dema herself experienced depression during this time.

“Most attendants who accompany their children for treatment are mothers, many of whom lack formal education. This makes their situation even more difficult,” Chimi added.

She emphasized that while patients are provided with psychiatric support, attendants also need similar assistance from counselors. Tshering Yuden has faced similar challenges.

Tshering Yuden also faced significant challenges. She noted that difficulties are not limited to experiences abroad.

“I struggled after returning home, especially during the pandemic when it was nearly impossible to contact the doctor responsible for my child’s treatment. Other doctors also refused to meet with me, claiming it was beyond their authority,” Tshering shared.

To prevent other parents from facing similar hardships, Chimi and Tshering are hopeful that the parent support group will effectively prepare and assist families of children suffering from cancer.

“We never received any emotional support and had to manage on our own. We want to ensure that no other parent endures the same hardships during such difficult times,” the women shared.

Tshering Yuden plans to return to her village to raise awareness about the importance of timely medical intervention. “Many people in villages rely on rituals or offerings before seeking medical help. I want to advocate against this practice to ensure that children receive prompt treatment,” Tshering said.

Karma Tobgay, Executive Director of BCS, emphasized the organization’s commitment to assisting patients. “We are dedicated to helping navigate the treatment process efficiently. We ensure that patients receive timely checkups and assist those who are unsure of what steps to take,” he said.

Karma Tobgay added that the support group will play a crucial role in raising awareness and bringing together parents of young cancer patients, ensuring that they receive emotional and psychosocial support from those like Chimi and Tshering who have firsthand experience.

“We are also planning outreach programs in four districts. We will visit early childhood care and development centers and gewogs in Punakha, Wangdue Phodrang, Dagana, and Zhemgang to meet parents and raise awareness about adolescent cancer,” Karma Tobgay said.

He also said that BCS would develop pamphlets detailing common symptoms for parents to watch for and create comprehensive guidelines for the parent support group.

Most adolescent cancer cases reported to BCS are leukemia or blood cancer. The national cancer registry recorded a total of 58 cancer cases in children aged 0 to 14 years between 2019 and 2022, with 26 cases in males and 32 in females.

The initiative to establish the parent support group is supported by Save the Children Bhutan and funded by the European Union.