Issues and Dilemmas in Conducting Research with Vulnerable Home Hospice Participants

Dobratz, Marjorie C.

doi:10.1111/j.1547-5069.2003.00371.x

Cited by 33 publications

(55 citation statements)

References 28 publications

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“…One study involved focus groups with patients and carers, recordings from which were thematically analysed using an interpretive approach [9]. Two studies considered those who had previously been invited to participate in research projects and analysed retrospectively the reasons why patients participated or declined to participate [5,10]. Not all studies considered all of the themes identified, but all themes were supported in more than one study with the exception of the impact of the views of others that was only considered in one study.…”

Section: Resultsmentioning

confidence: 99%

“…It also provided an opportunity to improve services and support for people in the future [9]. Confirming this, home-hospice participants in the USA expressed gratitude for being able to provide information that might possibly benefit others [10]. Similarly, the most frequently occurring positive theme from a questionnaire asking Scottish hospice patients about participating in research in general was a desire "to help other people" [8].…”

Section: Altruismmentioning

confidence: 89%

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What do palliative care patients and their relatives think about research in palliative care?—a systematic review

White

Hardy

2009

Support Care Cancer

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Section: Resultsmentioning

confidence: 99%

Section: Altruismmentioning

confidence: 89%

What do palliative care patients and their relatives think about research in palliative care?—a systematic review

White

Hardy

2009

Support Care Cancer

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“…The power calculation must take into account expected loss of subjects due to death, cognitive changes or symptoms that may prompt a decision to withdraw from the study. This need to oversample has been reported by others [3][4][5]11 and is an important consideration when planning hospice-based research. Based on previous experience, sample size for the REST study was calculated to assure a sufficient number of participants despite an expected 30% study withdrawal rate.…”

mentioning

confidence: 99%

“…Inclusion of an active study arm for massage therapy studies and offering a post-study free massage are strategies to mitigate drop-out rates in massage therapy research. (11).…”

mentioning

confidence: 99%

“…This was accomplished through building relationships between the on-site team and the research team, an approach that has been previously noted to be effective. 11,17 One research team member was the designated liaison for each site, assuming responsibility for regular contact with the on-site study coordinator and conducting the site visits. This liaison thus knew each site, its team, and its specific challenges well.…”

mentioning

confidence: 99%

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Methodological Challenges in Conducting a Multi-Site Randomized Clinical Trial of Massage Therapy in Hospice

Kutner

Smith

Mellis

et al. 2010

Journal of Palliative Medicine

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Researchers conducting multi-site studies of interventions for end-of-life symptom management face significant challenges with respect to obtaining an adequate sample and training and retaining on-site study teams. The purpose of this paper is to describe the strategies and responses to these challenges in a multi-site randomized clinical trial (RCT) of the efficacy of massage therapy for decreasing pain among patients with advanced cancer in palliative care/hospice settings. Over a period of 36 months, we enrolled 380 participants across 15 sites; 27% of whom withdrew prior to study completion (less than the anticipated 30% rate). We saw an average of 68% turnover amongst study staff. Three key qualities characterized successful on-site study teams: (1) organizational commitment; (2) strong leadership from on-site study coordinators; and (3) effective lines of communication between the on-site study coordinators and both their teams and the university-based research team. Issues of recruitment, retention and training should be accounted for in hospice-based research study design and budgeting.Overview of the REST (Reducing End-of-Life Symptoms with Touch) Study I n 2003, researchers from the University of Colorado Denver Schools of Medicine and Nursing received funding from the National Institutes of Health (NCCAM-1 R01 AT01006-01A2) to conduct a multi-site randomized clinical trial (RCT) to examine the efficacy of massage therapy for decreasing pain, improving quality of life, and lessening symptom distress in people with advanced cancer. Fifteen organizations, 14 of which were hospices and members of a national palliative care practice-based research network 1 served as study sites. Patients from these sites who were eligible and consented were randomly assigned to receive massage therapy (intervention) or the control condition, simple touch. Both treatment arms followed similar protocols which included up to six 30-minute treatment sessions over a 2-week period. At each site a team of committed hospice employees or volunteers implemented the study procedures. Participants receiving massage therapy had significantly greater immediate improvement in pain and mood; differences that were not sustained over time. Participants in both study arms experienced some improvement in pain and symptom distress over the course of their study enrollment; use of pain medications remained stable. 2 Methodologic ChallengesObtaining an adequate and appropriate sampleIn designing and implementing the REST study, we encountered the common challenge of obtaining an adequate sample. Participant recruitment may be difficult in any clinical trial; characteristics of the hospice/palliative care environment present unique challenges. Despite palliative care/hospice studies devoting significant time and resources to participant recruitment, sample sizes are often smaller than anticipated. [3][4][5] Researchers may significantly modify study designs to maintain trial viability. 6 In the REST study, we planned for a sample size of...

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Factors associated with attrition from a randomized controlled trial of meaning‐centered group psychotherapy for patients with advanced cancer

et al. 2011

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Objective The generalizability of palliative care intervention research is often limited by high rates of study attrition. This study examined factors associated with attrition from a randomized controlled trial comparing meaning-centered group psychotherapy (MCGP), an intervention designed to help advanced cancer patients sustain or enhance their sense of meaning to the supportive group psychotherapy (SGP), a standardized support group. Methods Patients with advanced solid tumor cancers (n = 153) were randomized to eight sessions of either the MCGP or SGP. They completed assessments of psychosocial, spiritual, and physical well-being pretreatment, midtreatment, and 2 months post-treatment. Attrition was assessed in terms of the percent of participants who failed to complete these assessments, and demographic, psychiatric, medical, and study-related correlates of attrition were examined for the participants in each of these categories. Results The rates of attrition at these time points were 28.1%, 17.7%, and 11.1%, respectively; 43.1% of the participants (66 of 153) completed the entire study. The most common reason for dropout was patients feeling too ill. Attrition rates did not vary significantly between study arms. The participants who dropped out pretreatment reported less financial concerns than post-treatment dropouts, and the participants who dropped out of the study midtreatment had poorer physical health than treatment completers. There were no other significant associations between attrition and any demographic, medical, psychiatric, or study-related variables. Conclusions These findings highlight the challenge of maintaining advanced cancer patients in longitudinal research and suggest the need to consider alternative approaches (e.g., telemedicine) for patients who might benefit from group interventions but are too ill to travel.

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Issues and Dilemmas in Conducting Research with Vulnerable Home Hospice Participants

Cited by 33 publications

References 28 publications

What do palliative care patients and their relatives think about research in palliative care?—a systematic review

What do palliative care patients and their relatives think about research in palliative care?—a systematic review

Methodological Challenges in Conducting a Multi-Site Randomized Clinical Trial of Massage Therapy in Hospice

Factors associated with attrition from a randomized controlled trial of meaning‐centered group psychotherapy for patients with advanced cancer

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