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Children's Cancer Foundation Over 30 years of caring service
Children's Palliative Care Foundation
Children's Palliative Care Foundation

Sunshine Kids

Sunshine Kids

Family-centred Care and a Loving Family

“Who knew all of that would come to pass? These days I cannot fall asleep without the curtains open. I have to see the light outside; when it’s dark in the room I feel so very scared. I know I shouldn’t overthink things, but that feeling of desperation and hopelessness is real.”

 

Life was hard enough for the family of four when her husband lost his job, struck down by chronic illness in the prime of his life. She took care of the family during the day and worked through the night to earn a living. She made a pittance and never had much rest during the day, but she did not complain. She stoically lived her life, resigned to her lot. Last year her elder son Ah Wah was diagnosed with cancer. Although his condition was stable, inside she had no peace. But she never expected what hit her next: early in the year her husband had a stroke and was diagnosed with nasopharyngeal carcinoma. One month later Ah Wah had a relapse. She was close to breaking down, as her world was quickly turned upside down and nothing made sense. Soon her husband’s condition worsened and died. She was left with two sons, grief-stricken, to continue to fight the injustice of cancer, and life, with all its hardship.

 

The experience of this mother is typical and illustrates powerfully the impact of cancer on the family. It brings into sharp relief all the challenges cancer can present to a family overwhelmed by problems coming from all directions. This is what drives the Foundation to provide a comprehensive, family-centred counselling service to child patients and their families. Delivering this service requires a methodical approach and sharp focus on the interactions between individual, family and their circumstances. When and if the service should be rendered depends on the overall conditions of the family, the relationships between individual family members, the individual’s situation and the prospective impact of the service on the family.

 

“It never even entered my mind; I wish I were the sick one!” Most parents would feel this way. Nobody wants to see their children stricken with cancer but things happen in life without us having a say. I hope the child patient and family members can reach deep within their inner selves to find the wisdom and strength to walk hand-in-hand the tough journey of fighting against cancer. “Family-centred Service” starts with a comprehensive review of the physical and psychological toll the illness exacts on the patient’s mood and social interaction; it then identifies the type of support and counsel the child patient and his family may require, such as psychotherapy, discharge planning and support, as well as bereavement care. The goal is to help family members develop their own potential and life wisdom, encourage harmony in familial relationships so that the family immune support system could be strengthened.

 

In the case of this afflicted family, Ah Wah and his father had to stay in different hospitals for their cancer treatment, making visits to each other impossible. The unexpected passing of Ah Wah’s father caused not only sadness but Ah Wah was also overwhelmed by guilt, remorse and regret. “I used to throw tantrums and make his life hell… what can I do now to make it up? I can’t do anything for him now. He toiled his whole life for us. He was not at peace when he left; I know he must be so worried about us, especially my younger brother.” Ah Wah shared with me crying. He was not a talkative person, yet he showed us a different Ah Wah these days when he spoke to me and to his mother. He teased his mother that her home-made rice crepes was “okay but would be better with more practice.” Chemotherapy changed his palate so that everything he put in his mouth tasted bitter. Even when he had no appetite, he told me he would “make an effort to eat more” so he wouldn’t worry his mother. The changes I saw in Ah Wah, clearly as a result of his love for his late father, mother and younger brother, astounded me. Children are often deemed immature, in the unequal power structure. We are convinced that they are not capable of handling their own affairs and hardship; they need help from other people. The new Ah Wah reminds us that we must give up our assumptions about children; we should not underestimate their capabilities and wisdom.

 

Family-centred counselling service works on the premise that individuals and families can rise up to the challenge of cancer. Since family members are the ones who understand most about their own situation and the needs of individual members, they are the best placed to help solve problems for the family. As a social worker, I intend our intervention only to serve as a catalyst in encouraging participation and contribution by each family member. In their fight against cancer, we want to help them develop their potential and wisdom, their zest for life and for one another, and for their hopes and dreams, desires, faith, principles and values. We cheer them on as they lean in to one another, held up by the strength of a loving family.

 

CCF Newsletter Vol.51 (Jan 2017)