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17. Walking a Tightrope: The Loss and Grief of Parents of Children with Cancer in Shanghai
- Hong Kong University Press, HKU
- Chapter
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17 Walking a Tightrope: The Loss and Grief of Parents of Children with Cancer in Shanghai Vivian Wei Qun LOU and Cecilia La i Wan CHAN Introduction Childhood cance r is one of the ten leading causes of death amon g childre n in China . Blood-relate d cancer s suc h a s acute lymphobasti c leukaemi a (ALL) an d acut e nonlymphobasti c leukaemi a (ANLL ) ar e th e mos t common types. 1-3 It is estimated tha t ther e ar e around 13,00 0 t o 15,00 0 new case s o f blood-related cance r i n Chin a eac h year. 4 The treatment o f and research on childhood cance r are both disappointing and encouraging. The disappointmen t stem s fro m th e majority o f new cases no t receivin g proper treatmen t fo r variou s reasons , suc h a s wrong diagnosis , poo r treatment protoco l a t hospitals i n mid-size citie s o r rural areas , an d lac k of financia l support. 4-5 However , th e standar d o f treatment i n researc h paediatric hospital s o r paediatric ward s in large citie s such a s Beijing an d Shanghai i s high. At the Shanghai Children' s Medica l Centr e (SCMC) , a national referra l centr e o f children' s cancer , i t was reported tha t th e estimated five-year disease-free surviva l rate was seventy-five percen t for ALL and fort y percen t fo r ANLL, rate s tha t ar e comparable t o internationa l figures.5-6 However , even children bein g treated in a paediatric hospital tha t can provid e th e most effective treatmen t protoco l hav e thei r qualit y of life affected, an d the threat o f death i s still high. 7 Having a child bein g diagnosi s o f cancer i s a traumatic experienc e fo r the family, which profoundl y affect s th e parents in three ways: the financial burden, role stress and psychosocial adjustment.*"10 However , grief is a socially constructed experience, and parents from different culture s may have differen t responses with regard t o illness, dying and the death o f a child.11-12 There is no stud y that examines the experiences of the grief of parents in the context of China' s one-chil d policy , as well as China's lac k o f health coverag e and psychosocial oncological services. This chapter has taken the initiative in filling this gap by exploring the experiences of parents in Shanghai. 242Vivian Wei QunLOU and Cecilia Lai Wan CHAN SocialContexts Three system s in contemporar y Chin a might have a significant influenc e o n the experiences of parents of children with leukaemia.13-14 They are th e one child policy , th e health-car e policy , and th e dominan t medica l approac h i n providing service . Thes e factor s contribut e t o parents ' feeling s o f shock , powerlessness, ambivalence, renqing debt (AfffM ) ( a sense of inferior feelin g in fron t o f relationshi p partie s an d a feelin g o f wis h t o conduc t certai n behaviour t o fulfil th e socia l norm o f renqing between relationshi p partie s i n future) a s well as financial debt , fear, helplessness , and isolation i f their chil d has cancer . Theone-childpolicyand theparent-childbond According t o Confucian tradition , a child in a Chinese famil y i s not onl y a n individual but is also a symbol of family continuity. 15 When ther e i s only on e child i n a family, al l expectations o f th e parent s ar e focuse d o n tha t child . This single chil d will be expecte d t o bring honou r t o th e family's ancestors , to tak e car e o f th e parent s when the y are old , an d t o fulfil th e goal s o f th e parents or the family.16 Therefore, th e parent-child bond is usually enmeshed: the parent s migh...