Clinical MethodsRecruitment and retention in a longitudinal palliative care study☆
Section snippets
Background
Palliative care addresses the physical, emotional, social, and spiritual needs of patients and family caregivers experiencing a life-threatening illness with the goal of promoting their quality of life across the illness/dying trajectory (Ferris & Cummings, 1995). Outcome measures of quality of life attempt to record patients' perceptions of how they feel and their sense of well-being to provide health professionals with the widest sense of the effect of different treatment regimens and
The research project
This study was approved by the IRBs of the health care system and university. The study involved a longitudinal design, in which patients with advanced cancer or AIDS and their family caregivers were to be followed monthly from the time of diagnosis of an advanced illness across the illness trajectory until death. The original target sample for this pilot study consisted of 20 patients with advanced AIDS and their family caregivers and another 20 patients with advanced cancer and their
Findings
To address the first aim of the study, which was to determine the feasibility of conducting a longitudinal study with patients who have an advanced illness and their caregivers, a retrospective analysis was conducted to examine recruitment, mortality and attrition rates, and compliance with data collection. Two researchers were assigned to follow the cancer patient/caregiver dyads, and another two to follow the AIDS patient/caregiver dyads. It was anticipated that each researcher would follow
Barriers to patient and family caregiver participation
Several themes emerged regarding the barriers to retention of patients and caregivers in the study, specifically: “too much stress,” “just want to talk,” “don't remind me of my illness,” “don't ask me about God,” “strained or conflicted relationships,” “call me back,” and “unavailability.” Many patients and family caregivers stated that they were experiencing too much stress, which influenced their desire and ability to participate monthly. At times the illness and its treatment effects
Facilitators of patient and family caregiver participation
Themes identified as facilitators of patient and family caregiver participation are feelings of being “cared for” and “wanting to give something back.” Many patients and family caregivers expressed a sense of being cared for by the researchers. By being asked questions about how they were feeling, patients and caregivers conveyed appreciation for the opportunity to express their perceptions, feelings, symptoms, and concerns, which validated their experience. During the process of completing the
Barriers related to institutional support
Although there were few perceived institutional barriers identified by the research team, one barrier was “overprotection of patients by health care providers.” Physicians and advanced practice nurses, who identified potential study participants, at times presupposed the patients' preferences regarding study participation, stating “I don't know if he would want to participate,” and expressed concern about overburdening the patients. However, when the physicians or nurses introduced the study
Facilitators related to institutional support
Facilitation of the research process occurred when the principal investigator “achieved staff buy-in” by introducing the study formally to the chairpersons of departments, physicians, and nursing staff and by requesting their support. As personnel changed, the researchers individually oriented the staff to the study to develop rapport and achieve staff buy-in. When researchers acknowledged the staff on the units and developed collegial relationships, they became invested in the research process.
Barriers related to the data collection process
Barriers related to data collection included “the no-show rate,” “issues about ongoing participation,” and “maintaining confidentiality.” For patients with AIDS, there was often difficulty in identifying potential participants in the clinic because there was often a 50% no-show rate for scheduled appointments. However, AIDS inpatients were often extremely ill, which made data collection difficult. Many participants questioned their ongoing participation and commitment to the study for
Facilitators related to the data collection process
Facilitators of the data collection process included “speaking by phone” and “creating a tracking system.” Many participants asked if the interviews could be conducted by phone when it was difficult to arrange an in-person interview. They identified the benefits as being more comfortable speaking by phone regarding personal issues, not having to commute to the hospital or clinic, a sense of comfort in being in their own home, more privacy, and flexibility regarding the time of the interview. It
Barriers personally experienced by research assistants
The research assistants expressed personal and professional barriers related to the research process, including feelings of “intimidation,” “discomfort asking personal questions and with patient/caregiver crying,” “personal fatigue,” “questioning personal effectiveness,” “expressing grief and condolences,” and “role conflict.” Intimidation was expressed by research assistants on several levels. The three graduate research assistants had not previously participated in a research study and were
Facilitators personally experienced by research assistants
The research process was facilitated for research assistants as they “gained confidence,” “related to the patient population,” and “took a break.” The research assistants gained confidence in data collection when they learned more about the research process and practiced introducing the study and administering the questionnaire booklet by role playing. Research assistants also stated that they became more confident when their knowledge of palliative care increased through course work and
Discussion and implications for future research
This longitudinal pilot study examined the feasibility of conducting palliative care research, particularly as patients' illnesses progress and death approaches. The recruitment of patients with advanced cancer or AIDS was not difficult as indicated by the numbers accrued; this was consistent with the experience of Dobratz (2003) in her study of home hospice patients. Recruitment was enhanced when researchers were confident in presenting the study and discussed participants' involvement and the
Conclusion
Palliative care research is a challenge and opportunity. Given that cross-sectional studies only give a snapshot in time, which does not capture the changing physical, emotional, social, and spiritual experiences and needs of patients and families at the end of life, longitudinal palliative care research is necessary to understand and enhance health care to these patients and families. However, longitudinal quantitative research is very difficult because the stresses of illness over time limit
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Cited by (47)
Psychological Symptoms in Advanced Cancer
2018, Seminars in Oncology NursingRecruitment and retention of a challenging population: Lessons learned and design implications
2017, Applied Nursing ResearchA pilot study of the experience of family caregivers of patients with advanced pancreatic cancer using a mixed methods approach
2014, Journal of Pain and Symptom ManagementCitation Excerpt :The results of this pilot study indicated that when asked to focus on their experience, caregivers felt a sense of care and concern for themselves, which was not communicated to family or health professionals. Prior studies conducted by the first author have identified the physical, emotional, and social needs of family caregivers28,29,37 and their willingness to participate in palliative care research.38,39 The pilot study also provided qualitative data regarding family caregiver experiences during the treatment phase of illness and reinforced the similarities to and differences from other cancer caregiving populations.
Challenges and strategies for recruitment and retention of vulnerable research participants: Promoting the benefits of participation
2012, Applied Nursing ResearchCitation Excerpt :Numerous strategies have addressed the challenges. These include (a) anticipation and planning for unexpected issues, (b) fostering support among providers (Northouse et al., 2006; Resnick et al., 2003; Sherman et al., 2005), (c) addressing clinician concerns (Chiang, Keatinge, & Williams, 2001), and (d) monitoring R&R throughout the study period (Sherman et al., 2005). Few strategies provide guidance on how best to approach and interact with the potential vulnerable study participant to enhance successful R&R (Huntington & Robinson, 2007; Wright, Crooks, Ellis, Mings, & Whelan, 2002).
Formal feasibility studies in palliative care: Why they are important and how to conduct them
2011, Journal of Pain and Symptom Management
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This study was funded by the National Cancer Institute.
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