Alderson, P; (2001) Children, healing, suffering and voluntary consent. In: Bendelow, G and Carpenter, M and Vautier, C and Williams, S, (eds.) Gender, health, and healing: the public/private divide. (pp. 198-211). Routledge: London, United Kindom.

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Abstract

In Beyond Separation (Hall and Stacey, 1979) sociological researchers showed how children in hospital were not suffering simply from the maternal deprivation which the Robertsons (1989) reported. Children also suffered from being lifted from their daily everyday social contexts into hospital wards where they languished, bored, lonely, frightened, and the `work objects’ of health professionals. The book reported years of team research which was indirectly initiated by the government’s expert report The Welfare of Children in Hospital (DHSS, 1959). Most hospitals took no notice of the new government policies that mothers should be encouraged to care for their children in hospital, and continued to ban parents from children’s wards. Struck by the contrast between official policy and her own experience of local hospitals, Meg Stacey started the Welsh Association for the Welfare of Children in Hospital (AWCH) to campaign for change, she also organised related research. An English version began, eventually being named the National Association for the Welfare of Children in Hospital (NAWCH). By the mid 1970s, hospitals varied. Some welcomed and supported parents in children’s wards, others continued to limit access, as I found when my children became patients, and I joined NAWCH and to help to change hospitals. Practical and policy experience developed into theoretical interest and ten years later I began work on a PhD about parents’ consent to children’s heart surgery.(1) The paediatric cardiac centres were sites of intense suffering as well as joy and relief. One in ten of the children who had surgery died. The units still had ambiguous policies about welcoming or excluding parents, which exacerbated the unintended suffering of families who were often far from their homes and support networks. Later, I researched children’s consent, mainly to orthopaedic surgery.(2) This chapter reviews research about informed and voluntary consent, and how suffering and moral feelings can expand the awareness which informs consent. Legal and ethical meanings of consent are contrasted. The opportunities for consent to prevent and reduce suffering are reviewed, and contributions from social science, which look below the surface of the commonsensical, towards understanding these links and opportunities are discussed, mainly in relation to parents’ and children’s consent.

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