Supporting families of terminally
This chapter provides an empirical overview of the support needs of families of terminally ill persons and the types of interventions that can be employed by nurses to offer support, based on Nolan and co-workers' (1996) temporal model of family caring. The focus, wherever possible, is on the support needs of families caring for seriously ill older people at home. A Swedish information and communication technology (ICT) project will be drawn upon to illustrate the benefits and limitations of using technology to support families. The chapter concludes with a summary of nurses' support work with families of terminally ill persons.
Within the empirical literature on family care-giving of terminally ill persons, it is clear that the focus remains to a large extent on cancer patients approaching the end of life. Andershed's (1999) literature review of the role of the family carer at the end of life highlighted that the majority of the 229 chosen articles published in peer-reviewed academic journals from the early 1980s through to 1998 were largely concerned with cancer patients. However, from this review and her own empirical studies (Andershed 1999; Andershed and Ternestedt 2001), three key themes of knowing, being and doing were identified in relation to the principal support needs of families of terminally ill persons. I have used Andershed's themes as a framework to explore the empirical literature from 1999 through to 2002 regarding the support needs of families caring for terminally ill relatives. More specifically, I have prioritized literature addressing the support needs of family carers of older people at the end of life wherever possible. An overview of the literature review findings is presented in Table 16.1.