The experiences of grandparents involved in the home-based end-of-life care of their grandchild with cancer: A qualitative secondary data analysis

References

• Arnone, M., Dumond, L. G., Yazdani, N., El-Baroudi, R., Pouliot, A., & Modanloo, S. (2022). Evaluation of a grandparent bereavement support group in a Pediatric Palliative Care Hospice. Progress in Palliative Care, 30(2), 75–82. https://doi.org/10.1080/09699260.2021.1988311
   Web of Science ®Google Scholar
• Bengtson, V. L. (2001). Beyond the nuclear family: The increasing importance of multigenerational bonds. The Burgess Award Lecture*. Journal of Marriage & Family, 63(1), 1–16. https://doi.org/10.1111/j.1741-3737.2001.00001.x
   Web of Science ®Google Scholar
• Benini, F., Papadatou, D., Bernadá, M., Craig, F., De Zen, L., Downing, J., Drake, R., Friedrichsdorf, S., Garros, D., Giacomelli, L., Lacerda, A., Lazzarin, P., Marceglia, S., Marston, J., Muckaden, M. A., Papa, S., Parravicini, E., Pellegatta, F., & Wolfe, J. (2022). International standards for pediatric palliative care: From IMPaCCT to GO-PPaCS. Journal of Pain & Symptom Management, 63(5), e529–e543. https://doi.org/10.1016/j.jpainsymman.2021.12.031
   PubMed Web of Science ®Google Scholar
• Bergstraesser, E., & Flury, M. (Red.), (2018). Care at the end of life for children with cancer. In I J. Wolfe, B. L. Jones, U. Kreicbergs, & M. Jankovic (Eds.), Palliative care in pediatric oncology. Springer International Publishing AG.
   Google Scholar
• Bluebond-Langner, M., Beecham, E., Candy, B., Langner, R., & Jones, L. (2013). Preferred place of death for children and young people with life-limiting and life-threatening conditions: A systematic review of the literature and recommendations for future inquiry and policy. Palliative Medicine, 27(8), 705–713. https://doi.org/10.1177/0269216313483186
   PubMed Web of Science ®Google Scholar
• Bowman, P. J. (Red.), (2013). a strengths-based social psychological approach to resiliency: Cultural diversity, ecological, and life span issues. In I S. Prince-Embury & D. H. Saklofske (Eds.), Resilience in children, adolescents, and adults: Translating research into practice. Springer.
   Google Scholar
• Bradford, N., Rolfe, M., Ekberg, S., Mitchell, G., Beane, T., Ferranti, K., & Herbert, A. (2021). Family meetings in paediatric palliative care: An integrative review. BMJ Supportive & Palliative Care, 11(3), 288–295. https://doi.org/10.1136/bmjspcare-2020-002333
   PubMed Web of Science ®Google Scholar
• Charlebois, S., & Bouchard, L. (2007). “The worst experience”: The experience of grandparents who have a grandchild with cancer. Canadian Oncology Nursing Journal = Revue Canadienne de Nursing Oncologique, 17(1), 26–36. https://doi.org/10.5737/1181912x1712630
   PubMedGoogle Scholar
• Coall, D. A., & Hertwig, R. (2010). Grandparental investment: Past, present, and future. The Behavioral & Brain Sciences, 33(1), 1–19. https://doi.org/10.1017/S0140525X09991105
   PubMed Web of Science ®Google Scholar
• Contro, N., & Sourkes, B. M. (2012). Opportunities for quality improvement in bereavement care at a children’s hospital: Assessment of interdisciplinary staff perspectives. Journal of Palliative Care, 28(1), 28–35. https://doi.org/10.1177/082585971202800105
   PubMed Web of Science ®Google Scholar
• Dempsey, L., Dowling, M., Larkin, P., & Murphy, K. (2016). Sensitive interviewing in qualitative research. Research in Nursing & Health, 39(6), 480–490. https://doi.org/10.1002/nur.21743
   PubMed Web of Science ®Google Scholar
• Dias, L. B., & Mendes-Castillo, A. M. C. (2021). The role of grandparents of children with cancer in the hospital. Revista Brasileira de Enfermagem, 74(5), e20201143. https://doi.org/10.1590/0034-7167-2020-1143
   PubMed Web of Science ®Google Scholar
• Donovan, L. A., Wakefield, C. E., Russell, V., & Cohn, R. J. (2015). Hospital-based bereavement services following the death of a child: A mixed study review. Palliative Medicine, 29(3), 193–210. https://doi.org/10.1177/0269216314556851
   PubMed Web of Science ®Google Scholar
• Dyregrov, K. (2004). Bereaved parents’ experience of research participation. Social Science & Medicine (1982), 58(2), 391–400. https://doi.org/10.1016/s0277-9536(03)00205-3
   PubMed Web of Science ®Google Scholar
• Flury, M., Orellana-Rios, C. L., Bergsträsser, E., & Becker, G. (2020). “This is the worst that has happened to me in 86 years”: A qualitative study of the experiences of grandparents losing a grandchild due to a neurological or oncological disease. Journal for Specialists in Pediatric Nursing: JSPN, 26(1), e12311. https://doi.org/10.1111/jspn.12311
   PubMed Web of Science ®Google Scholar
• Gilrane-McGarry, U., & O Grady, T. (2011). Forgotten grievers: An exploration of the grief experiences of bereaved grandparents. International Journal of Palliative Nursing, 17(4), 170–176. https://doi.org/10.12968/ijpn.2011.17.4.170
   PubMedGoogle Scholar
• Gilrane-McGarry, U., & O Grady, T. (2012). Forgotten grievers: An exploration of the grief experiences of bereaved grandparents (part 2). International Journal of Palliative Nursing, 18(4), 179–187. https://doi.org/10.12968/ijpn.2012.18.4.179
   PubMedGoogle Scholar
• Glajchen, M., Goehring, A., Johns, H., & Portenoy, R. K. (2022). Family meetings in palliative care: Benefits and barriers. Current Treatment Options in Oncology, 23(5), 658–667. https://doi.org/10.1007/s11864-022-00957-1
   PubMed Web of Science ®Google Scholar
• Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24(2), 105–112. https://doi.org/10.1016/j.nedt.2003.10.001
   PubMed Web of Science ®Google Scholar
• Hall, E. O. C. (2004a). A double concern: Danish grandfathers’ experiences when a small grandchild is critically ill. Intensive & Critical Care Nursing, 20(1), 14–21. https://doi.org/10.1016/j.iccn.2003.10.005
   PubMedGoogle Scholar
• Hall, E. O. C. (2004b). A double concern: Grandmothers’ experiences when a small grandchild is critically ill. Journal of Pediatric Nursing, 19(1), 61–69. https://doi.org/10.1016/S0882-5963(03)00143-X
   PubMedGoogle Scholar
• Hammer, N. M., Hansson, H., Pedersen, L. H., Abitz, M., Sjøgren, P., Schmiegelow, K., Bidstrup, P. E., Larsen, H. B., & Olsen, M. (2023). Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families’ and professionals’ experiences. Palliative Medicine, 37(1), 149–162. https://doi.org/10.1177/02692163221135350
   PubMed Web of Science ®Google Scholar
• Heaton, J. (2008). Secondary analysis of qualitative data: An overview. Historical Social Research, 33, 3345. https://doi.org/10.12759/HSR.33.2008.3.33-45
   Google Scholar
• Hochschild, A. R. (1979). Emotion work, feeling rules, and social structure. American Journal of Sociology, 85(3), 551–575. https://doi.org/10.1086/227049
   Web of Science ®Google Scholar
• Hudson, P., Girgis, A., Thomas, K., Philip, J., Currow, D. C., Mitchell, G., Parker, D., Liew, D., Brand, C., Le, B., & Moran, J. (2021). Do family meetings for hospitalised palliative care patients improve outcomes and reduce health care costs? A cluster randomised trial. Palliative Medicine, 35(1), 188–199. https://doi.org/10.1177/0269216320967282
   PubMed Web of Science ®Google Scholar
• Hynson, J. L., Aroni, R., Bauld, C., & Sawyer, S. M. (2006). Research with bereaved parents: A question of how not why. Palliative Medicine, 20(8), 805–811. https://doi.org/10.1177/0269216306072349
   PubMed Web of Science ®Google Scholar
• Kelada, L., Wakefield, C. E., Doolan, E. L., Drew, D., Wiener, L., Michel, G., & Cohn, R. J. (2019). Grandparents of children with cancer: A controlled comparison of perceived family functioning. Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer, 27(6), 2087–2094. https://doi.org/10.1007/s00520-018-4468-7
   PubMed Web of Science ®Google Scholar
• Lincoln, Y. S., & Guba, E. G. (1985). Establishing trustworthiness. In I Y. S. Lincoln & E. G. Guba (Red.), Naturalistic inquiry. Sage Publications.
   Google Scholar
• Long-Sutehall, T., Sque, M., & Addington-Hall, J. (2011). Secondary analysis of qualitative data: A valuable method for exploring sensitive issues with an elusive population? Journal of Research in Nursing, 16(4), 335–344. https://doi.org/10.1177/1744987110381553
   Google Scholar
• Lumivero. (2020). (u.å.). NVivo (Version 13, 2020 R1). www.lumivero.com
   Google Scholar
• Malcolm, C., Knighting, K., & Taylor, C. (2020). Home-based end of life care for children and their families—A systematic scoping review and narrative synthesis. Journal of Pediatric Nursing, 55, 126–133. https://doi.org/10.1016/j.pedn.2020.07.018
   PubMed Web of Science ®Google Scholar
• Malterud, K. (2001). Qualitative research: Standards, challenges, and guidelines. Lancet (London, England), 358(9280), 483–488. https://doi.org/10.1016/S0140-6736(01)05627-6
   PubMed Web of Science ®Google Scholar
• Margolis, R., & Wright, L. (2017). Healthy grandparenthood: How long is it, and how has it changed? Demography, 54(6), 2073–2099. https://doi.org/10.1007/s13524-017-0620-0
   PubMed Web of Science ®Google Scholar
• Mendes-Castillo, A. M. C., & Bousso, R. S. (2016). The experience of grandmothers of children with cancer. Revista Brasileira de Enfermagem, 69(3), 559–565. https://doi.org/10.1590/0034-7167.2016690320i
   PubMedGoogle Scholar
• Moules, N. J., Laing, C. M., McCaffrey, G., Tapp, D. M., & Strother, D. (2012). Grandparents’ experiences of childhood cancer, Part 1: Doubled and silenced. Journal of Pediatric Oncology Nursing: Official Journal of the Association of Pediatric Oncology Nurses, 29(3), 119–132. https://doi.org/10.1177/1043454212439626
   PubMed Web of Science ®Google Scholar
• Moules, N. J., McCaffrey, G., Laing, C. M., Tapp, D. M., & Strother, D. (2012). Grandparents’ experiences of childhood cancer, part 2: The need for support. Journal of Pediatric Oncology Nursing: Official Journal of the Association of Pediatric Oncology Nurses, 29(3), 133–140. https://doi.org/10.1177/1043454212439627
   PubMed Web of Science ®Google Scholar
• Nehari, M., Grebler, D., & Toren, A. (2007). A voice unheard: Grandparents’ grief over children who died of cancer. Mortality, 12(1), 66–78. https://doi.org/10.1080/13576270601088475
   Google Scholar
• Nielsen, M. K., Neergaard, M. A., Jensen, A. B., Bro, F., & Guldin, M.-B. (2016). Do we need to change our understanding of anticipatory grief in caregivers? A systematic review of caregiver studies during end-of-life caregiving and bereavement. Clinical Psychology Review, 44, 75–93. https://doi.org/10.1016/j.cpr.2016.01.002
   PubMed Web of Science ®Google Scholar
• Noriega, C., López, J., Domínguez, R., & Velasco, C. (2017). Perceptions of grandparents who provide auxiliary care: Value transmission and child‐rearing practices. Child & Family Social Work, 22(3), 1227–1236. https://doi.org/10.1111/cfs.12339
   Web of Science ®Google Scholar
• O’Connor, S. (2020). Secondary data analysis in nursing research: A contemporary discussion. Clinical Nursing Research, 29(5), 279–284. https://doi.org/10.1177/1054773820927144
   PubMed Web of Science ®Google Scholar
• Papadatou, D., Bluebond-Langner, M., & Goldman, A. (Red.) (2011). The team. In I J. Wolfe, P. S. Hinds, & B. M. Sourkes (Eds.), Textbook of interdisciplinary pediatric palliative care. Elsevier/Saunders.
   Google Scholar
• Patton, M. Q. (2002). Qualitative research and evaluation methods (3 ed). Sage Publications.
   Google Scholar
• Roose, R. E., & Blanford, C. R. (2011). Perinatal grief and support spans the generations: parents’ and grandparents’ evaluations of an intergenerational perinatal bereavement program. The Journal of Perinatal & Neonatal Nursing, 25(1), 77–85. https://doi.org/10.1097/JPN.0b013e318208cb74
   PubMed Web of Science ®Google Scholar
• Ruggiano, N., & Perry, T. E. (2019). Conducting secondary analysis of qualitative data: Should we, can we, and how? Qualitative Social Work: QSW: Research & Practice, 18(1), 81–97. https://doi.org/10.1177/1473325017700701
   PubMed Web of Science ®Google Scholar
• Stroebe, M., & Schut, H. (2015). Family matters in bereavement: Toward an integrative intra-interpersonal coping model. Perspectives on Psychological Science: A Journal of the Association for Psychological Science, 10(6), 873–879. https://doi.org/10.1177/1745691615598517
   PubMedGoogle Scholar
• Szydlik, M. (2008). Intergenerational solidarity and conflict. Journal of Comparative Family Studies, 39(1), 97–114. https://doi.org/10.3138/jcfs.39.1.97
   Web of Science ®Google Scholar
• Tatterton, M. J., & Lyon, J. A. (2022). ‘I no longer feel alone’: Meeting the needs of bereaved grandparents through a children’s hospice support group. International Journal of Palliative Nursing, 28(5), 193–201. https://doi.org/10.12968/ijpn.2022.28.5.193
   PubMed Web of Science ®Google Scholar
• Tatterton, M. J., & Walshe, C. (2019a). How grandparents experience the death of a grandchild with a life-limiting condition. Journal of Family Nursing, 25(1), 109–127. https://doi.org/10.1177/1074840718816808
   PubMed Web of Science ®Google Scholar
• Tatterton, M. J., & Walshe, C. (2019b). Understanding the bereavement experience of grandparents following the death of a grandchild from a life‐limiting condition: A meta‐ethnography. Journal of Advanced Nursing, 75(7), 1406–1417. https://doi.org/10.1111/jan.13927
   PubMed Web of Science ®Google Scholar
• Tourjeman, K., Doron, I., & Cohen, M. (2015). Losing a grandchild: The mourning experience of grandparents in Israel. Death Studies, 39(8), 491–499. https://doi.org/10.1080/07481187.2014.970298
   PubMed Web of Science ®Google Scholar
• Treml, J., Schmidt, V., Nagl, M., & Kersting, A. (2021). Pre-loss grief and preparedness for death among caregivers of terminally ill cancer patients: A systematic review. Social Science & Medicine (1982), 284, 114240. https://doi.org/10.1016/j.socscimed.2021.114240
   PubMed Web of Science ®Google Scholar
• Turner, R. H. (Red.) (2010). Role theory. In I J. H. Turner (Ed.) Handbook of sociological theory. (1. softcover pr., [repr.]). Springer.
   Google Scholar
• Villar, F., Celdrán, M., & Triadó, C. (2012). Grandmothers offering regular auxiliary care for their grandchildren: An expression of generativity in later life? Journal of Women & Aging, 24(4), 292–312. https://doi.org/10.1080/08952841.2012.708576
   PubMed Web of Science ®Google Scholar
• Virdun, C., Brown, N., Phillips, J., Luckett, T., Agar, M., Green, A., & Davidson, P. M. (2015). Elements of optimal paediatric palliative care for children and young people: An integrative review using a systematic approach. Collegian (Royal College of Nursing, Australia), 22(4), 421–431. https://doi.org/10.1016/j.colegn.2014.07.001
   PubMed Web of Science ®Google Scholar
• von Humboldt, S., Monteiro, A., & Leal, I. (2018). How do older adults experience intergenerational relationships? Different cultures, ambivalent feelings. Educational Gerontology, 44(8), 501–513. https://doi.org/10.1080/03601277.2018.1520528
   Web of Science ®Google Scholar
• Wakefield, C. E., Drew, D., Ellis, S. J., Doolan, E. L., McLoone, J. K., & Cohn, R. J. (2014a). Grandparents of children with cancer: A controlled study of distress, support, and barriers to care: Grandparental distress in child cancer. Psycho-oncology, 23(8), 855–861. https://doi.org/10.1002/pon.3513
   PubMed Web of Science ®Google Scholar
• Wakefield, C. E., Drew, D., Ellis, S. J., Doolan, E. L., McLoone, J. K., & Cohn, R. J. (2014b). ‘What they’re not telling you’: A new scale to measure grandparents’ information needs when their grandchild has cancer. Patient Education & Counseling, 94(3), 351–355. https://doi.org/10.1016/j.pec.2013.10.030
   PubMed Web of Science ®Google Scholar
• Wakefield, C. E., Fardell, J. E., Doolan, E. L., Drew, D., De Abreu Lourenco, R., Young, A. L., & Cohn, R. J. (2017). Grandparents of children with cancer: Quality of life, medication and hospitalizations: Wakefield. Pediatric Blood & Cancer, 64(1), 163–171. https://doi.org/10.1002/pbc.26153
   PubMed Web of Science ®Google Scholar
• Wakefield, C., Lin, S., Drew, D., McLoone, J., Doolan, E., Young, A., Fardell, J., & Cohn, R. (2016). Development and evaluation of an information booklet for grandparents of children with cancer. Journal of Pediatric Oncology Nursing: Official Journal of the Association of Pediatric Oncology Nurses, 33(5), 361–369. https://doi.org/10.1177/1043454215602689
   PubMed Web of Science ®Google Scholar
• Winger, A., Kvarme, L. G., Løyland, B., Kristiansen, C., Helseth, S., & Ravn, I. H. (2020). Family experiences with palliative care for children at home: A systematic literature review. BMC Palliative Care, 19(1), 165. https://doi.org/10.1186/s12904-020-00672-4
   PubMed Web of Science ®Google Scholar
• Wong, E. L.-Y., Liao, J. M., Etherton-Beer, C., Baldassar, L., Cheung, G., Dale, C. M., Flo, E., Husebø, B. S., Lay-Yee, R., Millard, A., Peri, K. A., Thokala, P., Wong, C., Chau, P. Y.-K., Chan, C. Y., Chung, R. Y.-N., & Yeoh, E.-K. (2020). Scoping review: Intergenerational resource transfer and possible enabling factors. International Journal of Environmental Research & Public Health, 17(21), 7868. https://doi.org/10.3390/ijerph17217868
   PubMed Web of Science ®Google Scholar
• Youngblut, J. M., Brooten, D., Blais, K., Kilgore, C., & Yoo, C. (2015). Health and functioning in grandparents after a young grandchild’s death. Journal of Community Health, 40(5), 956–966. https://doi.org/10.1007/s10900-015-0018-0
   PubMed Web of Science ®Google Scholar