Completed Research Project

The information needs of the families of patients with advanced cancer in the acute hospital

Investigators: Davis S & Kristjanson LJ.

Funding: Health Department of Western Australia, Helen Bailey Scholarship ($10,000).

Abstract: A diagnosis of cancer has a major impact on the family as well as the patient. The families of patients with advanced cancer have many needs. In particular, a number of researchers have identified family members’ needs for information as a priority. Most of this research, however, has been undertaken in the context of palliative care settings. Few empirical studies have been undertaken to examine the information needs of these families in an acute hospital setting.  The aim of this study was to modify an existing tool, The Family Inventory of Needs (FIN), to more precisely assess the information needs of these families in an acute hospital setting and to measure the extent to which these needs are met. A three-phase study was conducted.  Phase I involved interviews conducted with eight bereaved family members of patients who had received care at a 600-bed teaching hospital in Perth, Western Australia.  Phase II involved modification of the FIN, based on the interviews and the current literature; to more precisely assess the information needs of this population. Clarity and content validity of the FIN was assessed by calculating percent agreement (80%) amongst the families interviewed in Phase I. Several modifications were made to the FIN based on family feedback and this modified FIN was assessed for clarity and content validity by six specialist nurses.  Phase III was a descriptive quantitative pilot study, which involved administering the modified FIN to 60 families of patients with advanced cancer at the 600-bed teaching hospital. Internal consistency and reliability of the tool was tested using Cronbach's alpha coefficient (Part A: r=0.91 and Part B: r=0.92). Stability of the instrument was tested using test - retest reliability procedure estimated using the intra-class correlation coefficient (Part A: r=0.91 and Part B: r=0.91). The self reported information needs and the extent to which these needs had been met were described.  It is anticipated that the modified questionnaire will be a useful and straightforward clinical tool that can be used by health care professionals to better assess the information needs of the families of patients with advanced cancer in an acute hospital. Health care professionals who are better able to assess families’ needs would then be able to respond more appropriately and precisely to assist these families.