End-of-life care research with bereaved informal caregivers--analysis of recruitment strategy and participation rate from a multi-centre validation study

Stephanie Stiel, Maria Heckel, Sonja Bussmann, Martin Weber, Christoph Ostgathe, Stephanie Stiel, Maria Heckel, Sonja Bussmann, Martin Weber, Christoph Ostgathe

Abstract

Background: One essential element of research is the successful recruitment of participants. However, concerns are obvious regarding the ethical implications of involving terminally ill and even dying patients and their informal caregivers as research participants. This study aims to illustrate central issues encountered when recruiting bereaved informal caregivers for a questionnaire validation study on the quality of dying and death.

Methods: Between July 2012 and November 2013, informal caregivers of deceased inpatients who were treated at two palliative care units in Germany were invited to participate in a questionnaire validation study. Informal caregivers were called by a trained researcher at the end of the fourth week after death at the earliest and by the sixteenth week after death at the latest and asked to participate in a face-to-face interview in their private home.

Results: The overall participation rate of all eligible informal caregivers was 76.1% (226/297). The mean burden score was 2.5 (NRS from 0=no burden to 10=maximum burden; n=221). Higher burden scores (≥4) were associated with emotional and burdensome memories (n=34) being invoked throughout the interview. Severe or maximum burden scores (≥7) were stated by 13.2% of participants. The average time between the associated patient's death and the informal caregiver's interview was 57.3 days (range 26-176 days, median 49.5 days). 5.3% of all 226 interviews were not completed due to different reasons. Participants' comments on the way in which the study was conducted gave insight into their motivation to take part in the study and their evaluation of the interview situation.

Conclusions: The recruitment strategy can be recommended to other researchers developing research with bereaved carers. The burden caused by study participation was acceptable to the researchers carrying out this research, although a small group of participants experienced high levels of burden which should be anticipated and appropriate support services offered. Family caregivers are willing to support end-of-life care research, have different motivations for participation and even reported benefits from participation. Nevertheless, study designs have to take into account and ease the potential burden of interviews for caregivers experiencing grief.

Figures

Figure 1
Figure 1
Study design and recruitment strategy.
Figure 2
Figure 2
Participant inclusion and exclusion, drop-outs.

References

    1. Aktas A, Walsh D. Methodological challenges in supportive and palliative care cancer research. Semin Oncol. 2011;38(3):460–6. doi: 10.1053/j.seminoncol.2011.03.017.
    1. Rees E. The ethics and practicalities of consent in palliative care research: an overview. Int J Palliat Nurs. 2001;7(10):489–92. doi: 10.12968/ijpn.2001.7.10.9907.
    1. Borgsteede SD, Deliens L, Francke AL, Stalman WA, Willems DL, van Eijk JT, et al. Defining the patient population: one of the problems for palliative care research. Palliat Med. 2006;20(2):63–8. doi: 10.1191/0269216306pm1112oa.
    1. Emanuel EJ, Fairclough DL, Wolfe P, Emanuel LL. Talking with terminally ill patients and their caregivers about death, dying, and bereavement: is it stressful? Is it helpful? Arch Intern Med. 2004;164(18):1999–2004. doi: 10.1001/archinte.164.18.1999.
    1. Gysels MH, Evans C, Higginson IJ. Patient, caregiver, health professional and researcher views and experiences of participating in research at the end of life: a critical interpretive synthesis of the literature. BMC Med Res Methodol. 2012;12:123. doi: 10.1186/1471-2288-12-123.
    1. Jordhoy MS, Kaasa S, Fayers P, Ovreness T, Underland G, Ahlner-Elmqvist M. Challenges in palliative care research; recruitment, attrition and compliance: experience from a randomized controlled trial. Palliat Med. 1999;13(4):299–310. doi: 10.1191/026921699668963873.
    1. Gysels M, Evans CJ, Lewis P, Speck P, Benalia H, Preston NJ, et al. MORECare research methods guidance development: recommendations for ethical issues in palliative and end-of-life care research. Palliat Med. 2013;27(10):908–17. doi: 10.1177/0269216313488018.
    1. Casarett D, Ferrell B, Kirschling J, Levetown M, Merriman MP, Ramey M, et al. NHPCO task force statement on the ethics of hospice participation in research. J Palliat Med. 2001;4(4):441–9. doi: 10.1089/109662101753381566.
    1. White C, Hardy J. What do palliative care patients and their relatives think about research in palliative care?-a systematic review. Support Care Cancer. 2010;18(8):905–11. doi: 10.1007/s00520-009-0724-1.
    1. Takesaka J, Crowley R, Casarett D. What is the risk of distress in palliative care survey research? J Pain Symptom Manage. 2004;28(6):593–8. doi: 10.1016/j.jpainsymman.2004.03.006.
    1. Hudson P. The experience of research participation for family caregivers of palliative care cancer patients. Int J Palliat Nurs. 2003;9(3):120–3. doi: 10.12968/ijpn.2003.9.3.11480.
    1. Heckel M, Bussmann S, Mai S, Stiel S, Weber M, Ostgathe C. Validierung des Fragebogens ‘Qualitiyof Dying and Death’ (QoDD) für Nahestehende von Palliativpatienten im deutschen Sprachraum. Z Palliativmed. 2014;15:134.
    1. Casarett DJ, Crowley R, Hirschman KB. Surveys to assess satisfaction with end-of-life care: does timing matter? J Pain Symptom Manage. 2003;25(2):128–32. doi: 10.1016/S0885-3924(02)00636-X.
    1. Lynn J, Teno JM, Phillips RS, Wu AW, Desbiens N, Harrold J, et al. Perceptions by family members of the dying experience of older and seriously ill patients. SUPPORT Investigators. Study to understand prognoses and preferences for outcomes and risks of treatments. Ann Intern Med. 1997;126(2):97–106. doi: 10.7326/0003-4819-126-2-199701150-00001.
    1. Mularski RA, Heine CE, Osborne ML, Ganzini L, Curtis JR. Quality of dying in the ICU: ratings by family members. Chest. 2005;128(1):280–7.
    1. Bausewein C, Fegg M, Radbruch L, Nauck F, van Mackensen S, Borasio GD, et al. Validation and clinical application of the german version of the palliative care outcome scale. J Pain Symptom Manage. 2005;30(1):51–62. doi: 10.1016/j.jpainsymman.2005.01.017.
    1. Gräfe K, Zipfel S, Herzog W, Löwe B. Screening psychischer Störungen mit dem “Gesundheitsfragebogen für Patienten (PHQ-D)”. Ergebnisse der deutschen Validierungsstudie. Diagnostica. 2004;50(4):171–81. doi: 10.1026/0012-1924.50.4.171.
    1. Stiel S, Matthes ME, Bertram L, Ostgathe C, Elsner F, Radbruch L. [Validation of the new version of the minimal documentation system (MIDOS) for patients in palliative care : the German version of the edmonton symptom assessment scale (ESAS)] Schmerz. 2010;24(6):596–604. doi: 10.1007/s00482-010-0972-5.
    1. Curtis JR, Patrick DL, Engelberg RA, Norris K, Asp C, Byock I. A measure of the quality of dying and death. Initial validation using after-death interviews with family members. J Pain Symptom Manage. 2002;24(1):17–31. doi: 10.1016/S0885-3924(02)00419-0.
    1. McClement SE, Woodgate RL. Research with families in palliative care: conceptual and methodological challenges. Eur J Cancer Care (Engl) 1998;7(4):247–54. doi: 10.1046/j.1365-2354.1998.00108.x.
    1. Gysels M, Shipman C, Higginson IJ. “I will do it if it will help others”: motivations among patients taking part in qualitative studies in palliative care. J Pain Symptom Manage. 2008;35(4):347–55. doi: 10.1016/j.jpainsymman.2007.05.012.
    1. Pessin H, Galietta M, Nelson CJ, Brescia R, Rosenfeld B, Breitbart W. Burden and benefit of psychosocial research at the end of life. J Palliat Med. 2008;11(4):627–32. doi: 10.1089/jpm.2007.9923.
    1. Davies EA, Hall SM, Clarke CR, Bannon MP, Hopkins AP. Do research interviews cause distress or interfere in management? Experience from a study of cancer patients. J R Coll Physicians Lond. 1998;32(5):406–11.
    1. Hunt KJ, Shlomo N, Addington-Hall J. Participant recruitment in sensitive surveys: a comparative trial of ‘opt in’ versus ‘opt out’ approaches. BMC Med Res Methodol. 2013;13:3. doi: 10.1186/1471-2288-13-3.

Source: PubMed

Спонсоры и соавторы

Заболевания

Медикаментозные вмешательства

Подписаться