Objective: To identify the issues related to recruiting bereaved family members for end-of-life research.
Methods: In two samples of recently bereaved family members, study participants were recruited from agency records. Letters about the study and informed consents were mailed to potential participants. Starting two weeks later, telephone contact was attempted. Calls were made at least three times, at different times of the day before a potential participant was considered lost to follow up. In sample 1, the study used focus groups. A list of ICU patients 55 years or older who died in the ICU was obtained from 8 intensive care units in two large teaching hospitals in the intermountain west. Letters were sent out six to eighteen months after the patient?s death. For sample 2, the study used individual interviews. Family members of patients who died in the inpatient unit of a Midwestern hospice were recruited. Letters were sent four months to one year after a patient died.
Findings: In both studies, many potential participants were lost to follow up due to a phone disconnection, no answer, or no reply to messages left (sample 1, n=35; sample 2, n=27). In some instances (sample 1, n=2; sample 2, n=1), the patient?s spouse had died between the patient?s death and the time of the study contact. Of those who were reached, there were a number of reasons for refusal to participate. These included: outright refusal without explanation (sample 1, n=11; sample 2, n=8), being too ill to participate (n=4; sample 1, n=3; sample 2, n=1), did not feel able to talk about their experience (n=5; sample 1, n=2; sample 2, n=3), were too busy (sample 2, n=2), were ?too forgetful? (sample 2, n=1), another family member told the researcher not to contact an individual (sample 2, n=2), they preferred to contact the researcher when they were ready (sample 2, n=2), they preferred an individual interview (sample 1, n=13), or they preferred to write a letter (sample 1, n=1). In addition, a number of participants were lost to follow up due to the events of 9/11/01. In the 4 weeks following this event one participant did not show up for a scheduled interview and did not answer phone calls or return messages, and 7 individuals who asked for a second consent form to be sent did not return the consent or recontact the researchers. Telephone calls to these individuals were not answered and messages were not returned. A few participants (study 2, n=3) scheduled interviews and then did not show up (n=2) or were not at their home (n=1) at the time of the interview. Two of these individuals did not answer phone calls or reply to messages that were left. The other individual was reached by telephone and offered to be interviewed at another time but refused to set a time and offered to call the researcher when an interview was convenient. No call was ever received.
Conclusions: There are many reasons why bereaved family members choose to participate or refrain from a study that requires them to review the events of the last days of a family member?s life. External events, such as the 9/11 tragedy may exacerbate grief and cause individuals who previously had agreed, to withdraw. The life event of losing a family member causes numerous changes in residence and activity for many individuals affecting willingness to participate in a study.
Implications: A number of issues for further study have been raised. Contact of potential study participants at 2 months after the death has been recommended to increase recall and minimize respondent burden (Foley, 1990). Earlier contact might also reduce the number of potential participants lost to follow up due to address or telephone changes. Other methods of participants indicating interest such as returning post cards or providing a phone card for participants to use to call at their convenience may be tested to determine their effectiveness. Since the most practical approach to evaluation of quality of dying is to choose patients who have already died and to use family interviews to provide information (Rosenfeld & Wenger, 2000), it is critical that we determine ways to reduce or eliminate the barriers that prevent individuals from participating in these studies.
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