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

[1]  M. Heckel,et al.  Validierung des Fragebogens ‚Quality of Dying and Death‘ (QoDD) für Nahestehende von Palliativpatienten im deutschen Sprachraum , 2014 .

[2]  I. Higginson,et al.  MORECare research methods guidance development: Recommendations for ethical issues in palliative and end-of-life care research , 2013, Palliative medicine.

[3]  Natalie Shlomo,et al.  Participant recruitment in sensitive surveys: a comparative trial of ‘opt in’ versus ‘opt out’ approaches , 2013, BMC Medical Research Methodology.

[4]  I. Higginson,et al.  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 , 2012, BMC Medical Research Methodology.

[5]  D. Walsh,et al.  Methodological challenges in supportive and palliative care cancer research. , 2011, Seminars in oncology.

[6]  F. Elsner,et al.  [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)]. , 2010, Schmerz.

[7]  C. Ostgathe,et al.  Validierung der neuen Fassung des Minimalen Dokumentationssystems (MIDOS2) für Patienten in der Palliativmedizin , 2010, Der Schmerz.

[8]  J. Hardy,et al.  What do palliative care patients and their relatives think about research in palliative care?—a systematic review , 2010, Supportive Care in Cancer.

[9]  W. Breitbart,et al.  Burden and benefit of psychosocial research at the end of life. , 2008, Journal of palliative medicine.

[10]  Marjolein Gysels,et al.  "I will do it if it will help others:" motivations among patients taking part in qualitative studies in palliative care. , 2008, Journal of pain and symptom management.

[11]  W. Stalman,et al.  Defining the patient population: one of the problems for palliative care research , 2006, Palliative medicine.

[12]  L. Radbruch,et al.  Validation and clinical application of the german version of the palliative care outcome scale. , 2005, Journal of pain and symptom management.

[13]  R. Mularski,et al.  Quality of dying in the ICU , 2005 .

[14]  R. Mularski,et al.  Quality of dying in the ICU: ratings by family members. , 2005, Chest.

[15]  D. Casarett,et al.  What is the risk of distress in palliative care survey research? , 2004, Journal of pain and symptom management.

[16]  E. Emanuel,et al.  Talking with terminally ill patients and their caregivers about death, dying, and bereavement: is it stressful? Is it helpful? , 2004, Archives of internal medicine.

[17]  S. Zipfel,et al.  Screening psychischer Störungen mit dem "Gesundheitsfragebogen für Patienten (PHQ-D)" Ergebnisse der deutschen Validierungsstudie , 2004 .

[18]  P. Hudson.  The experience of research participation for family caregivers of palliative care cancer patients. , 2003, International journal of palliative nursing.

[19]  K. Hirschman,et al.  Surveys to assess satisfaction with end-of-life care: does timing matter? , 2003, Journal of pain and symptom management.

[20]  D. Patrick,et al.  A measure of the quality of dying and death. Initial validation using after-death interviews with family members. , 2002, Journal of pain and symptom management.

[21]  E. Rees.  The ethics and practicalities of consent in palliative care research: an overview. , 2001, International journal of palliative nursing.

[22]  P. Silverman,et al.  NHPCO Task Force Statement on the Ethics of Hospice Participation in Research. , 2001, Journal of palliative medicine.

[23]  S. Kaasa,et al.  Challenges in palliative care research; recruitment, attrition and compliance: experience from a randomized controlled trial , 1999, Palliative medicine.

[24]  R. Woodgate,et al.  Research with families in palliative care: conceptual and methodological challenges. , 1998, European journal of cancer care.

[25]  C. Clarke,et al.  Do Research Interviews Cause Distress or Interfere in Management? , 1998, Journal of the Royal College of Physicians of London.

[26]  Albert Wu,et al.  Perceptions by Family Members of the Dying Experience of Older and Seriously Ill Patients , 1997, Annals of Internal Medicine.