Identifying, recruiting, and retaining seriously-ill patients and their                 caregivers in longitudinal research

Steinhauser, Karen E.; Clipp, Elizabeth C.; Hays, Judith C.; Olsen, Maren K.; Arnold, Robert M.; Christakis, Nicholas A.; Lindquist, Jennifer H.; Tulsky, James A.

doi:10.1177/0269216306073112

Cited by 184 publications

(196 citation statements)

References 25 publications

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“…8,17,18 This method allows potential participants to consider the research before being approached directly by an investigator. In the CPCCRN bereavement studies, parents were initially contacted by mailed letter.…”

Section: Privacymentioning

confidence: 99%

“…Although personalizing the research may comfort parents, caution must be taken not to compromise parents' understanding of the research aims or exert undue influence on their decision to participate. 7,17 For example, to personalize the research, all contact letters and telephone calls originated from the local site rather than the DCC. Letters were printed on hospital letterhead, addressed by hand and signed by both the site investigator and research coordinator.…”

Section: Voluntarinessmentioning

confidence: 99%

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Ethical and Logistical Considerations of Multicenter Parental Bereavement Research

Meert

Eggly

Dean

et al. 2008

Journal of Palliative Medicine

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Background-Multicenter research has the potential to recruit participants with diverse racial, ethnic, and geographic backgrounds and is essential for understanding heterogeneity in bereavement. The National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network (CPCCRN) is a multicenter network charged with conducting research on the pathophysiology and management of critical illness in childhood. Among its research activities, the CPCCRN has undertaken research in parental bereavement because most childhood deaths in the United States occur in hospitals, primarily in critical care units.

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Section: Privacymentioning

confidence: 99%

Section: Voluntarinessmentioning

confidence: 99%

Ethical and Logistical Considerations of Multicenter Parental Bereavement Research

Meert

Eggly

Dean

et al. 2008

Journal of Palliative Medicine

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“…18,24 Attrition Attrition (including drop-out, nonresponse, withdrawal, and protocol deviation) is a major issue in studies with a follow-up element. [11][12][13][25][26][27][28] Some attrition is inevitable in end-of-life care research due to deterioration in a patient's condition or death, but might also result from respondent burden and changes, such as in respondents' circumstances (e.g., relocation) or contextual changes (e.g., changes in local services or treatments). This can lead to missing data that can affect validity.…”

Section: Resultsmentioning

confidence: 99%

“…[12][13]26,36,[39][40][41][42] Outcomes often need to relate to families. 12 Difficulties in the administration and interpretation of outcome measures have been reported.…”

Section: Discussionmentioning

confidence: 99%

Mixed Methods Research in the Development and Evaluation of Complex Interventions in Palliative and End-of-Life Care: Report on the MORECare Consensus Exercise

Farquhar

Preston

Evans

et al. 2013

Journal of Palliative Medicine

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Background: Complex interventions are common in palliative and end-of-life care. Mixed methods approaches sit well within the multiphase model of complex intervention development and evaluation. Generic mixed methods guidance is useful but additional challenges in the research design and operationalization within palliative and end-of-life care may have an impact on the use of mixed methods. Objective: The objective of the study was to develop guidance on the best methods for combining quantitative and qualitative methods for health and social care intervention development and evaluation in palliative and end-of-life care. Methods: A one-day workshop was held where experts participated in facilitated groups using Transparent Expert Consultation to generate items for potential recommendations. Agreement and consensus were then sought on nine draft recommendations (DRs) in a follow-up exercise. Results: There was at least moderate agreement with most of the DRs, although consensus was low. Strongest agreement was with DR1 (usefulness of mixed methods to palliative and end-of-life care) and DR5 (importance of attention to respondent burden), and least agreement was with DR2 (use of theoretical perspectives) and DR6 (therapeutic effects of research interviews). Narrative comments enabled recommendation refinement. Two fully endorsed, five partially endorsed, and two refined DRs emerged. The relationship of these nine to six key challenges of palliative and end-of-life care research was analyzed. Conclusions: There is a need for further discussion of these recommendations and their contribution to methodology. The recommendations should be considered when designing and operationalizing mixed methods studies of complex interventions in palliative care, and because they may have wider relevance, should be considered for other applications.

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“…It could be proposed that the nurse may filter who they feel is appropriate for the study by their own interpretation of the inclusion criteria (Steinhauser et al, 2006). In the context of this study the nurse may be determining which patients are palliative and in doing so potentially exclude carers who would be fitting to be involved in the study.…”

Section: Discussionmentioning

confidence: 99%

Capturing the carer’s experience: a researcher’s reflections

2016

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This paper reflects on the methodological challenges of conducting a study exploring the impact of being an informal carer for a person with palliative heart failure on carer quality of life and factors influential to carer's perception of caringThe study is a 2 phase sequential mixed methods study. A sample of carers was recruited from Heart Failure Nurses (HFN) caseloads in UK rural and urban settings.Carers were invited to complete the Family Quality of Life (FAMQOL) questionnaire, a tool developed for carers of heart failure patients. Participants were also asked to provide contact details if they are willing to be interviewed.Each HFN was given 20 questionnaires. A third of carers who returned the completed questionnaires agreed to participate in an interview. Initial response rate was good but questionnaire returns gradually decreased over a few weeks. It transpired that due to the nature of the service delivery, on average each nurse distributed 5 questionnaires during a three month period.The study highlights important methodological considerations for recruiting carers.As the intention was to begin the analysis of the questionnaires prior to commencing the second phase of the study the researcher was compelled to consider how 3 integration was maintained and how to improve access to carers for research.Reflections and recommendations addressing these methodological challenges will be critically discussed in the paper. KeywordsPalliative heart failure Mixed methods study Informal carers GatekeepersHard to reach groups

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Identifying, recruiting, and retaining seriously-ill patients and their caregivers in longitudinal research

Abstract: Recruitment to prospective longitudinal studies at the end of life is difficult, but possible. The lessons learned from this study are applicable to future investigators conducting prospective research.

Cited by 184 publications

References 25 publications

Ethical and Logistical Considerations of Multicenter Parental Bereavement Research

Ethical and Logistical Considerations of Multicenter Parental Bereavement Research

Mixed Methods Research in the Development and Evaluation of Complex Interventions in Palliative and End-of-Life Care: Report on the MORECare Consensus Exercise

Capturing the carer’s experience: a researcher’s reflections

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