BACKGROUND: We pilot tested an instrument which gathers information from people in bereavement. Specific areas of data collection include demographic information, grief process, depression, anxiety, stress, spirituality, social support, and risk factors.
METHODS: For initial pilot testing, 3 of the larger PoPCRN hospices sent out study instruments to a total of 150 bereaved individuals. Potential respondents received a cover letter on hospice letterhead explaining the study and requesting participation, a copy of the study instrument, and a business-reply envelope for return of the completed instrument. By design, pilot respondents included those who were removed from the death of a loved one by varying lengths of time. Inclusion of this range of bereaved individuals allowed evaluation of responsiveness of the instrument and of bereaved individuals to study participation at different points in time. In addition, respondents were specifically asked about their likelihood of participating in the proposed longitudinal study, the amount of time required for study instrument completion, and about bereavement-related issues, especially concerning spirituality, that were missing from the study instrument.
RESULTS: Forty eight of the 150 pilot instruments were completed and returned (response rate = 32%) within 2-3 weeks of initial instrument distribution. In these pilot data, median respondent age is 57 years (range = 37 to 84 years). As expected, pilot respondents represent a range of periods of time since the death of a loved one (< 3 months = 23%, 3-6 months = 25%, 7-12 months = 21%, >1 year = 31%). Respondents represent spouses (52%), sons and daughters (31%), siblings (6%), and parents (8%) of deceased individuals. Respondents were quite thorough in instrument completion. On average, only 2 of the 186 items were left blank. Most (67%) respondents completed the study instrument in less than 40 minutes and most (75%) respondents indicated that they would be likely or very likely to participate in the 2 additional data collection points required in the proposed study. Of note, there was no association between how long it took to complete the survey or how long ago the death occurred and respondents? expressed willingness to participate in two additional data collection points. Respondents to the pilot mentioned several spiritual and bereavement-related issues in response to open-ended questions inquiring about topics missing from the initial pilot version of the study instrument. Several respondents described the influence on their bereavement experience of caregiving burden, multiple losses, financial issues, regret and guilt. In terms of spiritual issues, respondents requested inquiry about their relationship with God, the benefit of ritual, the frequency of interactions with clergy, and whether and how spiritual beliefs changed during their loved ones illness and with time. In addition, two respondents requested inclusion of open-ended questions about spiritual beliefs, especially in the context of 'nontraditional' spiritual beliefs.