Living with Loss

Miscarriage is not uncommon – 10 to 20 in every 100 pregnancies end before term – yet it’s still rarely discussed. HKU’s Department of Social Work and Social Administration and the Hong Kong Jockey Club have worked together to launch the Perinatal Bereavement Care project to help bereaved parents who find themselves isolated in their sadness.

“The term we use is ‘disenfranchised grief’, which means the grief is not socially recognised,” said Dr Celia Hoi Yan Chan, Associate Professor of the Department of Social Work and Social Administration (DSWSA), who led development of the service. “If the foetus dies within the first trimester, often it is not even mentioned, as though it never existed. But to expectant parents it is a significant loss.”

Work began on developing the bereavement care service last year, with an online survey to examine attitudes towards and knowledge of pregnancy loss in Hong Kong. “The results revealed misconceptions about the causes of miscarriage – including strenuous exercise, eating certain foods and sex during pregnancy – as well as misplaced expressions of condolence that are meant well but may add to the parents’ distress,” said Dr Chan.

“We found that even some health professionals are not good at talking to parents and may offer trite and ill-informed responses such as: ‘You’ll get over it. Time heals all wounds’, and ‘You are still young; you still have a chance to get pregnant again in the future’. Bereaved parents are left feeling disappointed and saddened by expressions that advise them to forget about their miscarried child, disregard their identity as a parent, and diminish their grief.”

After the survey, Dr Chan initiated a public campaign, named ‘Break the Silence – Pregnancy Loss Week’, to raise public awareness and create a supportive space for parents who are grieving. “A series of echoing events related to life and death education, professional training, therapeutic programmes were delivered during the campaign,” she said, “and community partners were invited to ‘Light a Candle’ to remember all the precious little lives that have been lost.”

The survey also revealed that bereaved couples are disinclined to ask for help in a face-to-face situation but felt they would be more comfortable – at least initially – with an online approach. “We wanted the bereavement service to connect hospital to community,” said Dr Chan. “To this end we collaborated with the Hong Kong Young Women’s Christian Association Family Wellness Centre and Caritas-Hong Kong Grace Port-Caritas Miscarriage Support Centre to develop integrated care for the bereaved couples from hospitals to the community with online and in-person support.”

The goal is to give holistic psychosocial support to the parents, their families and friends, as well as to equip health and care professionals with the empathy skills needed for the situation.

“The DSWSA’s main responsibility in this was the establishment of the service delivery framework,” said Dr Chan. ”Based on the step-care model, we identified three tiers of intervention upon the assessments performed in the triage process: universal emotional support, acute support and clinical/therapeutic level support.”

Slowing the pace

For the design of the online platform, Dr Chan and the NGOs worked closely with local artists because they specifically wanted the design to set a different approach. “We wished to slow down the visitors’ pace, and to feel and understand the experience of pregnancy loss,” said Dr Chan. “Through discussing pregnancy loss from different perspectives, we hope to accompany the bereaved parents to walk through the grief and pain.”

Various sections of the website include information about pregnancy loss, help produce a family reminiscence album, connections with community support services, and testimonials from other bereaved parents.

For family and those close to the parents, the website gives practical advice and summarises some dos and don’ts to help them grasp the psychological and social challenges a bereaved parent can face, as well as recommendations of how to support them emotionally and practically. An online memorial space, entitled ‘Lantern of Remembrance and Support’, enables people to send their blessings and condolences.

Dr Chan said: “Our overall vision is to develop seamless, integrated care and support for bereaved couples going through grief over pregnancy loss. There is an unknown quote that I really like: ‘There is no foot too small that it cannot leave an imprint on this world – the little footprint of the baby shall be forever remembered by parents.’”