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The advanced stages of disease can be associated with a great deal of distress for patients and their loved ones (Lobb et al, 2006; Murray et al, 2010; Candy et al, 2011). For example, families/friends of terminally ill people can become confused, fearful, experience despair and helplessness (Maher and Hemming, 2005) and feel very isolated (Thomas et al, 2002). When people are in situations over which they have no control, e.g. when a loved one is dying, they can display avoidance behaviour and deny that their loved one is seriously ill (Folkman, 1997; Folkman and Greer, 2000). They may also start to anticipate life without their loved one, which causes them to experience intense grief reactions before the person has died, i.e. anticipatory mourning (Rando, 2000). Risk factors for severe emotional distress among family/friends include being a spouse of the terminally ill person, the patient being of a young age, overhearing conversations between healthcare staff outside the room while the patient is dying and after death and poor health status of the family member (Shinjo et al, 2010).
In addition, family/friends are very much concerned with the patient’s comfort and require information about the dying process (Vachon et al, 1995; Candy et al, 2011). For example, great distress is caused when it is perceived that not enough effort is being made to keep the patient comfortable and when healthcare professionals have not provided sufficient information about what to expect in terms of common clinical signs indicating that the patient’s condition is deteriorating (Sörensen et al, 2002; Shinjo et al, 2010). Families/friends need a ‘guide’ to help them become more knowledgeable about the disease and dying process (McLeod et al, 2010; Candy et al, 2011). Their ability to cope, and the level of information …
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