China Daily (Canada) - - SHANGHAI -

pres­i­dent of Shang­hai Chil­dren’s Med­i­cal Cen­ter.

The so­cial work­ers depart­ment in the Chil­dren’s Hos­pi­tal of Fu­dan Univer­sity in Shang­hai was es­tab­lished in 1998. To­day, the depart­ment has 39 groups of vol­un­teers and many of them do more than just pro­vide emo­tional care to fam­i­lies. For in­stance, the so­cial work­ers have to at times act as the com­mu­ni­ca­tion bridge be­tween doc­tors and fam­i­lies when treat­ments don’t pro­duce the de­sired re­sults.

“Par­ents are of­ten frus­trated and blame the doc­tors when the treat­ments don’t yield the ex­pected out­comes. This is when we step in to calm these par­ents down and help them un­der­stand that the doc­tors want noth­ing but the best for their pa­tients,” ex­plained Zhang.

In cases where a child’s med­i­cal in­sur­ance is in­suf­fi­cient, so­cial work­ers of­ten help poverty-stricken fam­i­lies to source for fi­nan­cial as­sis­tance and they do so by con­tact­ing a host of char­i­ties and foun­da­tion on be­half of the par­ents.

Gould first vis­ited China with her hus­band in 1994 and the cou­ple had worked in var­i­ous or­phan­ages as part of an in­ter­na­tional team of vol­un­teers. The ex­pe­ri­ence was such a ful­fill­ing one that they de­cided to re­turn ev­ery year. In 2006, the Goulds made the life-chang­ing de­ci­sion to in­vest their time and money into the cause, sell­ing their big home and cars back in the UK to move to Luoyang, He­nan prov­ince.

“We knew that if we re­ally wanted to make a dif­fer­ence, we needed to live in China,” said Gould.

De­spite her ex­pe­ri­ence as a nurse in the UK, Gould said that she nev­er­the­less had much to learn about pe­di­atric nurs­ing in or­der to help China’s or­phans.

“When­ever I went back to the UK, I would find an ex-col­league who could teach me more about it. So ev­ery time I re­turned to China, I knew a bit more about pe­di­atrics,” said Gould.

Due to her self­less ef­forts in Chang­sha, Gould has been fea­tured in the me­dia on nu­mer­ous oc­ca­sions. She said this has re­sulted in an in­creas­ing num­ber of peo­ple in China be­com­ing more aware and in­ter­ested in con­tribut­ing to the pal­lia­tive care move­ment.

Gould has also been ap­proached by lo­cal doc­tors who are in­ter­ested in work­ing to­gether to de­velop health­care mod­els. She added that she is more than happy to of­fer con­sul­tancy ser­vices to help oth­ers set up their own prac­tices. How­ever, Gould noted that there are still lo­cal cul­tural be­liefs and su­per­sti­tions about death that stand in the way, but she is con­fi­dent that these will even­tu­ally fade away in the fu­ture.

She is hop­ing that But­ter­fly Chil­dren’s Hos­pice can through ed­u­ca­tion and train­ing ini­tia­tives help to fur­ther pro­mote pal­lia­tive care in China. The home is cur­rently work­ing on pro­duc­ing Chi­nese text­books and train­ing ma­te­ri­als.

It has also launched a new ed­u­ca­tional video, which ac­cord­ing to Gould is avail­able to “any health­care pro­fes­sional to use…to ed­u­cate peo­ple about pal­lia­tive care: what does it do, what does it need.” The video in­cludes footage of par­ents speak­ing about their ex­pe­ri­ences in pal­lia­tive care.

“We re­ally felt that the one thing we could do through our work is to show peo­ple that we can care and make a dif­fer­ence for the chil­dren who will live very short lives,” said Gould.

“And maybe in this way the gov­ern­ment will see this as an essential model of care for chil­dren suf­fer­ing from ter­mi­nal ill­nesses.”

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