Engaging Parents of Children Who Died From Cancer in Research on the Early Grief Experience |
| |
| Authors: | Jennifer M Snaman Gabrielle Helton Justin N Baker Sue E Morris Hasan Al-Sayegh Clement Ma Joanne Wolfe |
| |
| Institution: | 1. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA;2. Department of Pediatrics, Boston Children''s Hospital, Boston, MA, USA;3. Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children''s Research Hospital, Memphis, TN, USA;4. Department of Psychiatry, Boston Children''s Hospital, Boston, MA, USA;5. Department of Psychiatry, Brigham and Women''s Hospital, Boston, MA, USA;6. Dana-Farber/Boston Children''s Cancer and Blood Disorders Center, Boston, MA, USA;7. Harvard Medical School, Boston, MA, USA;1. Department of Health Services, Policy & Practice, Brown University School of Public Health, Providence, Rhode Island, USA;2. VA Palo Alto Healthcare System, Palo Alto, California, USA;3. Corporal Michael J. Crescenz VA Medical Center, Philadelphia, Pennsylvania, USA;4. School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, USA;5. Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania, USA;6. Rocky Mountain Regional VA Medical Center, Aurora, Colorado, USA;7. University of Colorado Anshutz Medical Campus, Aurora, Colorado, USA;8. VA Ann Arbor Healthcare System, Ann Arbor, Michigan, USA;9. University of Michigan Medical School, Ann Arbor, Michigan, USA;10. Stanford University School of Medicine, Palo Alto, California, USA;11. Department of Veterans Affairs, National Center for Ethics in Health Care, Washington, District of Columbia, USA;12. University of Washington School of Public Health, Seattle, Washington, USA;13. University of Washington School of Medicine, Seattle, Washington, USA;1. Department of Surgery, University of Minnesota Medical School, Minneapolis, Minnesota, USA;2. Department of Medicine, University of Minnesota Medical School, Minneapolis, Minnesota, USA;3. Department of Surgery, Medical College of Wisconsin, Milwaukee, Wisconsin, USA;4. Department of Surgery, North Memorial Health Hospital, Robbinsdale, Minnesota, USA;5. Department of Biostatistics, University of Michigan School of Public Health, Ann Arbor, Michigan, USA;6. Institute for Health Informatics, University of Minnesota Academic Health Center, Minneapolis, Minnesota, USA;7. Department of Surgery, University of North Carolina School of Medicine, Chapel Hill, North Carolina, USA;8. School of Public Health, University of North Carolina, Chapel Hill, North Carolina, USA;1. Department of Nursing, Chang Gung Memorial Hospital at Chia-Yi, Chia-Yi County, Taiwan;2. College of Nursing, National Taipei University of Nursing and Health Sciences, Taipei City, Taiwan;3. Department of Urology, Taipei Veterans General Hospital, Taipei City, Taiwan;4. Department of Urology, School of Medicine, Shu-Tien Urological Institute, National Yang-Ming University, Taipei City, Taiwan;5. Division of Urology, Department of Surgery, Chang Gung Memorial Hospital at Linkou, Tao-Yuan City, Taiwan;6. College of Medicine, Chang Gung University, Tao-Yuan City, Taiwan;7. Division of Urology, Department of Surgery, Chang Gung Memorial Hospital at Keelung, Kee-Lung City, Taiwan;8. Department of Urology, New Taipei City Municipal Tucheng Hospital, New Taipei City, Taiwan;1. Division of Geriatric Medicine & Palliative Care Program, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA;2. Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA;3. Division of General Internal Medicine, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania, USA;4. Department of Biostatistics, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA;5. Division of Hematology and Oncology, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA;6. Department of Psychiatry, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA;1. Department of Palliative Care, St George Hospital, Kogarah, Sydney, Australia;2. Department of Renal Medicine, St George Hospital, Kogarah, Sydney, Australia;3. St George & Sutherland Clinical Schools, University of NSW, Sydney, New South Wales, Australia;1. Johns Hopkins University School of Medicine, Baltimore, Maryland, USA;2. Johns Hopkins Berman Institute of Bioethics, Baltimore, Maryland, USA;3. Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA |
| |
| Abstract: | ContextBereaved parents provide an important perspective for improving care for patients and families throughout the illness and after a child's death. However, involvement of bereaved parents in research studies is fraught with concerns over inflicting psychological distress and issues with study recruitment. Data on research strategies to engage parents early in their bereavement are limited.ObjectivesTo describe involvement of bereaved parents in the development of a comprehensive survey, examine the response rates with varying recruitment strategies and describe participation experiences of parent participants.MethodsParents of children who endured the death of their child from cancer six to 24 months prior were invited to complete a 195-item survey examining their early grief experience.ResultsForty-nine of the 137 eligible parents from 36 different households completed the survey (response rate 36%). The respondents were predominantly white (N = 43; 88%), female (N = 32; 65%), and non-Hispanic (N = 43; 88%). The median length of time from child's death to survey completion was 11 months (range 7–26). Thirty parents (61%) indicated they were comfortable/very comfortable answering the survey, 40 (82%) answered that they experienced at least a little benefit from involvement, and 36 (73%) indicated they experienced at least some distress.ConclusionSome parents of children who died of cancer are willing to participate in research early in their bereavement, and although most experience some distress, they are comfortable answering questions about their experience and benefit from participation. Recruitment strategies including personal outreach may result in better response rates. |
| |
| Keywords: | Grief bereavement pediatric cancer bereaved parents |
| 本文献已被 ScienceDirect 等数据库收录！ |
|
