“What about me?”: lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition

References

• Alderfer, M. A., Long, K. A., Lown, E. A., Marsland, A. L., Ostrowski, N. L., Hock, J. M., & Ewing, L. J. (2010). Psychosocial adjustment of siblings of children with cancer: A systematic review. Psycho-Oncology, 19(8), 789––13. https://doi.org/10.1002/pon.1638
   PubMed Web of Science ®Google Scholar
• ALLEA. (2023). The European Code of Conduct for Research Integrity – Revised edition ALLEA. https://allea.org/code-of-conduct/
   Google Scholar
• Barlow, J. H., & Ellard, D. R. (2006). The psychosocial well-being of children with chronic disease, their parents and siblings: An overview of the research evidence base. Child: Care, Health and Development, 32(1), 19­–31. https://doi.org/10.1111/j.1365-2214.2006.00591.x
   PubMed Web of Science ®Google Scholar
• Bergvoll, L.-M., Fjelldal, S. S., Clancy, A., Martinussen, M., & Laholt, H. (2023). How do public health nurses in Norwegian school health services support siblings of children with complex care needs? Scandinavian Journal of Caring Sciences, 37(4), 1100–1108. https://doi.org/10.1111/scs.13184
   PubMed Web of Science ®Google Scholar
• Björk, M., Nordström, B., Wiebe, T., & Hallström, I. (2011). Returning to a changed ordinary life–families’ lived experience after completing a child’s cancer treatment: Returning to a changed life. European Journal of Cancer Care, 20(2), 163–169. https://doi.org/10.1111/j.1365-2354.2009.01159.x
   PubMed Web of Science ®Google Scholar
• Boyden, J. Y., Feudtner, C., Deatrick, J. A., Widger, K., LaRagione, G., Lord, B., & Ersek, M. (2021). Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: A multi-method, multi-stakeholder approach. BMC Palliative Care, 20(1), 17–17. https://doi.org/10.1186/s12904-020-00703-0
   PubMed Web of Science ®Google Scholar
• Brennan, C., Hugh-Jones, S., & Aldridge, J. (2013). Paediatric life-limiting conditions: Coping and adjustment in siblings. Journal of Health Psychology, 18(6), 813–824. https://doi.org/10.1177/1359105312456324
   PubMed Web of Science ®Google Scholar
• Bronsema, A., Theißen, T., Oechsle, K., Wikert, J., Escherich, G., Rutkowski, S., Bokemeyer, C., & Ullrich, A. (2022). Looking back: Identifying supportive care and unmet needs of parents of children receiving specialist paediatric palliative care from the bereavement perspective. BMC Palliative Care, 21(1), 87–87. https://doi.org/10.1186/s12904-022-00971-y
   PubMed Web of Science ®Google Scholar
• Chin, W. L., Jaaniste, T., & Trethewie, S. (2018). The role of resilience in the sibling experience of pediatric palliative care: What is the theory and evidence? Children, 5(7), 97. https://doi.org/10.3390/children5070097
   PubMedGoogle Scholar
• CHIP. (2023). CHIP – children in palliative care. OsloMet. https://uni.oslomet.no/chip/
   Google Scholar
• Connelly, L. M. (2016). Trustworthiness in qualitative research. Medsurg Nursing, 25(6), 435–436.
   PubMedGoogle Scholar
• Connor, S. R. P., Downing, J. P., & Marston, J. R. N. M. A. (2016). Estimating the global need for palliative care for children: A cross-sectional analysis. Journal of Pain and Symptom Management, 53(2), 171–177. https://doi.org/10.1016/j.jpainsymman.2016.08.020
   PubMed Web of Science ®Google Scholar
• Coombes, L., Braybrook, D., Roach, A., Scott, H., Harðardóttir, D., Bristowe, K., Ellis-Smith, C., Bluebond-Langner, M., Fraser, L. K., Downing, J., Farsides, B., Murtagh, F. E. M., & Harding, R. (2022). Achieving child-centred care for children and young people with life-limiting and life-threatening conditions—a qualitative interview study. European Journal of Pediatrics, 181(10), 3739–3752. https://doi.org/10.1007/s00431-022-04566-w
   PubMed Web of Science ®Google Scholar
• Deavin, A., Greasley, P., & Dixon, C. (2018). Children’s perspectives on living with a sibling with a chronic illness. Pediatrics, 142(2), e20174151. https://doi.org/10.1542/peds.2017-4151
   PubMed Web of Science ®Google Scholar
• Dinkelbach, L., Köhler, M., Galushko, M., Pieper, L., Kuhlen, M., Danneberg, M., Dechert, O., Trocan, L., & Janßen, G. (2023). Psychosocial well-being of siblings of pediatric patients in palliative home care. Journal of Pain and Symptom Management, 66(6), 630–637.e1. https://doi.org/10.1016/j.jpainsymman.2023.08.022
   PubMed Web of Science ®Google Scholar
• D’Urso, A., Mastroyannopoulou, K., & Kirby, A. (2017). Experiences of posttraumatic growth in siblings of children with cancer. Clinical Child Psychology and Psychiatry, 22(2), 301–317. https://doi.org/10.1177/1359104516660749
   PubMed Web of Science ®Google Scholar
• Eaton Russell, C., Widger, K., Beaune, L., Neville, A., Cadell, S., Steele, R., Rapoport, A., Rugg, M., & Barrera, M. (2018). Siblings’ voices: A prospective investigation of experiences with a dying child. Death Studies, 42(3), 184–194. https://doi.org/10.1080/07481187.2017.1334009
   PubMed Web of Science ®Google Scholar
• Eilegård, A., Steineck, G., Nyberg, T., & Kreicbergs, U. (2013). Bereaved siblings’ perception of participating in research–a nationwide study. Psycho-Oncology, 22(2), 411–416. https://doi.org/10.1002/pon.2105
   PubMed Web of Science ®Google Scholar
• Eilertsen, M.-E. B., Lövgren, M., Wallin, A. E., & Kreicbergs, U. (2018). Cancer-bereaved siblings’ positive and negative memories and experiences of illness and death: A nationwide follow-up. Palliative & Supportive Care, 16(4), 406–413. https://doi.org/10.1017/S1478951517000529
   PubMed Web of Science ®Google Scholar
• Erker, C., Yan, K., Zhang, L., Bingen, K., Flynn, K. E., & Panepinto, J. (2018). Impact of pediatric cancer on family relationships. Cancer Medicine, 7(5), 1680–1688. https://doi.org/10.1002/cam4.1393
   PubMed Web of Science ®Google Scholar
• Fraser, L. K., Gibson-Smith, D., Jarvis, S., Norman, P., & Parslow, R. C. (2021). Estimating the current and future prevalence of life-limiting conditions in children in England. Palliative Medicine, 35(9), 1641–1651. https://doi.org/10.1177/0269216320975308
   PubMed Web of Science ®Google Scholar
• Fredriksen, T., Marie Vatne, T., Bjartveit Haukeland, Y., Tudor, M., & Fjermestad, K. W. (2023). Siblings of children with chronic disorders: Family and relational factors as predictors of mental health. Journal of Child Health Care, 27(1), 145–159. https://doi.org/10.1177/13674935211052157
   PubMed Web of Science ®Google Scholar
• Fullerton, J. M., Totsika, V., Hain, R., & Hastings, R. P. (2017). Siblings of children with life‐limiting conditions: Psychological adjustment and sibling relationships. Child: Care, Health and Development, 43(3), 393–400. https://doi.org/10.1111/cch.12421
   PubMed Web of Science ®Google Scholar
• Gaab, E. M., Owens, G. R., & MacLeod, R. D. (2014). Siblings caring for and about pediatric palliative care patients. Journal of Palliative Medicine, 17(1), 62–67. https://doi.org/10.1089/jpm.2013.0117
   PubMed Web of Science ®Google Scholar
• Gerhardt, C. A., Lehmann, V., Long, K. A., & Alderfer, M. A. (2015). Supporting siblings as a standard of care in pediatric oncology. Pediatric Blood & Cancer, 62(S5), S678–S732. https://doi.org/10.1002/pbc.25821
   Web of Science ®Google Scholar
• Gill, F. J., Hashem, Z., Stegmann, R., & Aoun, S. M. (2021). The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review. Palliative Medicine, 35(1), 76–96. https://doi.org/10.1177/0269216320967593
   PubMed Web of Science ®Google Scholar
• Graham, A., Powell, M., Taylor, N., Anderson, D., & Fitzgerald, R. (2013). Ethical research involving children. F. U. O. o. R.-. Innocenti.
   Google Scholar
• Haukeland, Y. B., Czajkowski, N. O., Fjermestad, K. W., Silverman, W. K., Mossige, S., & Vatne, T. M. (2020). Evaluation of “SIBS”, an intervention for siblings and parents of children with chronic disorders. Journal of Child and Family Studies, 29(8), 2201–2217. https://doi.org/10.1007/s10826-020-01737-x
   Web of Science ®Google Scholar
• Haukeland, Y. B., Fjermestad, K. W., Mossige, S., & Vatne, T. M. (2015). Emotional experiences among siblings of children with rare disorders. Journal of Pediatric Psychology, 40(7), 712–720. https://doi.org/10.1093/jpepsy/jsv022
   PubMed Web of Science ®Google Scholar
• Houtzager, B. A., Grootenhuis, M. A., Caron, H. N., & Last, B. F. (2005). Sibling self-report, parental proxies, and quality of life: The importance of multiple informants for siblings of a critically ill child. Journal of Pediatric Hematology/oncology, 22(1), 25–40. https://doi.org/10.1080/08880010590896233
   Google Scholar
• Hovén, E., Lindahl Norberg, A., Toft, T., & Forinder, U. (2023). Siblings of children diagnosed with cancer: Being faced with a moral dilemma. Journal of Family Studies, 29(3), 1043–1060. https://doi.org/10.1080/13229400.2021.2021273
   Web of Science ®Google Scholar
• Husby, I. S. D., Slettebø, T., & Juul, R. (2018). Partnerships with children in child welfare: The importance of trust and pedagogical support. Child & Family Social Work, 23(3), 443–450. https://doi.org/10.1111/cfs.12435
   Web of Science ®Google Scholar
• Ivéus, K., Eklund, R., Kreicbergs, U., & Lövgren, M. (2022). Family bonding as a result of the family talk intervention in pediatric oncology: Siblings’ experiences. Pediatric Blood & Cancer, 69(3), e29517. https://doi.org/10.1002/pbc.29517
   PubMed Web of Science ®Google Scholar
• Jaaniste, T., Chin, W. L. A., Tan, S. C., Cuganesan, A., Coombs, S., Heaton, M., Cowan, S., Potter, D., Aouad, P., Smith, P. L., & Trethewie, S. (2022). Parent and well-sibling communication in families with a child who has a life-limiting condition: Quantitative survey data. Journal of Pediatric Psychology, 47(5), 606. https://doi.org/10.1093/jpepsy/jsab128
   PubMed Web of Science ®Google Scholar
• Jaaniste, T., Tan, S. C., Aouad, P., & Trethewie, S. (2020). Communication between parents and well‐siblings in the context of living with a child with a life‐threatening or life‐limiting condition. Journal of Paediatrics and Child Health, 56(10), 1521–1526. https://doi.org/10.1111/jpc.15138
   PubMed Web of Science ®Google Scholar
• Jenhaug, L. M. (2014). “Det gjør det mulig å ha en familie samla”: Foreldres erfaringer når et barn har fått innvilget brykerstyrt personlig assistanse. Høgskolen i Lillehammer. http://hdl.handle.net/11250/299682.
   Google Scholar
• Jenhaug, L., & Askheim, O. P. (2018). Empowering parents as co-producers: Personal assistance for families with disabled children. Scandinavian Journal of Disability Research: SJDR, 20(1), 266–276. https://doi.org/10.16993/sjdr.57
   Google Scholar
• Joosten, M. M. H., van Gorp, M., van Dijk, J., Kremer, L. C. M., van Dulmen den Broeder, E., Tissing, W. J. E., Loonen, J. J., van der Pal, H. J. H., de Vries, A. C. H., van den Heuvel-Eibrink, M. M., Ronckers, C., Bresters, D., Louwerens, M., Neggers, S. J. C. C. M., van der Heiden van der Loo, M., Maurice-Stam, H., & Grootenhuis, M. A. (2023). Psychosocial functioning of adult siblings of Dutch very long-term survivors of childhood cancer: DCCSS-LATER 2 psycho-oncology study. Psycho-Oncology, 32(9), 1401–1411. https://doi.org/10.1002/pon.6191
   PubMed Web of Science ®Google Scholar
• Kirk, S. (2007). Methodological and ethical issues in conducting qualitative research with children and young people: A literature review. International Journal of Nursing Studies, 44(7), 1250–1260. https://doi.org/10.1016/j.ijnurstu.2006.08.015
   PubMed Web of Science ®Google Scholar
• Knecht, C., Hellmers, C., & Metzing, S. (2015). The perspective of siblings of children with chronic illness: A literature review. Journal of Pediatric Nursing, 30(1), 102–116. https://doi.org/10.1016/j.pedn.2014.10.010
   PubMed Web of Science ®Google Scholar
• Kobayashi, K., Hayakawa, A., & Hohashi, N. (2015). Interrelations between siblings and parents in families living with children with cancer. Journal of Family Nursing, 21(1), 119–148. https://doi.org/10.1177/1074840714564061
   PubMed Web of Science ®Google Scholar
• Kortesluoma, R.-L., Hentinen, M., & Nikkonen, M. (2003). Conducting a qualitative child interview: Methodological considerations: Conducting a qualitative child interview. Journal of Advanced Nursing, 42(5), 434–441. https://doi.org/10.1046/j.1365-2648.2003.02643.x
   PubMed Web of Science ®Google Scholar
• Kreicbergs, U., Nilsson, S., Jenholt Nolbris, M., & Lövgren, M. (2022). Using communication tools to explore young siblings’ experiences of having a brother or sister with pediatric palliative care needs. Children, 9(5), 641. https://doi.org/10.3390/children9050641
   PubMedGoogle Scholar
• Lazzarin, P., Schiavon, B., Brugnaro, L., & Benini, F. (2018). Parents spend an average of nine hours a day providing palliative care for children at home and need to maintain an average of five life‐saving devices. Acta Paediatrica, 107(2), 289–293. https://doi.org/10.1111/apa.14098
   PubMed Web of Science ®Google Scholar
• Lincoln, Y. S. (1985). Naturalistic inquiry. Sage.
   Google Scholar
• Løkkeberg, B., Sollesnes, R., Hestvik, J., & Langeland, E. (2020). Adolescent siblings of children with cancer: A qualitative study from a salutogenic health promotion perspective. International Journal of Qualitative Studies on Health and Well-Being, 15(1), 1842015–1842015. https://doi.org/10.1080/17482631.2020.1842015
   PubMed Web of Science ®Google Scholar
• Long, K. A., Lehmann, V., Gerhardt, C. A., Carpenter, A. L., Marsland, A. L., & Alderfer, M. A. (2018). Psychosocial functioning and risk factors among siblings of children with cancer: An updated systematic review. Psycho-Oncology, 27(6), 1467–1479. https://doi.org/10.1002/pon.4669
   PubMed Web of Science ®Google Scholar
• Lövgren, M., Udo, C., Alvariza, A., & Kreicbergs, U. (2020). Much is left unspoken: Self‐reports from families in pediatric oncology. Pediatric Blood & Cancer, 67(12), e28735. https://doi.org/10.1002/pbc.28735
   PubMed Web of Science ®Google Scholar
• Lövgren, M., Udo, C., & Kreicbergs, U. (2022). Is the family talk intervention feasible in paediatric oncology? An evaluation of a family‐based psychosocial intervention. Acta Paediatrica, 111(3), 684–692. https://doi.org/10.1111/apa.16190
   PubMed Web of Science ®Google Scholar
• Marklund, S., Sjödin Eriksson, E., Lindh, V., & Saveman, B.-I. (2018). Family health conversations at a pediatric oncology center — a way for families to rebalance the situation. Journal of Pediatric Nursing, 38, e59–e65. https://doi.org/10.1016/j.pedn.2017.10.004
   PubMed Web of Science ®Google Scholar
• Ministry of Health and Care Services. (2017). NOU 2017: 16. På Liv Og død-Palliasjon Til Alvorlig Syke Og Døende. https://www.regjeringen.no/no/dokumenter/nou-2017-16/id2582548/
   Google Scholar
• Montreuil, M., & Carnevale, F. A. (2018). Participatory hermeneutic ethnography: A methodological framework for health ethics research with children. Qualitative Health Research, 28(7), 1135–1144. https://doi.org/10.1177/1049732318757489
   PubMed Web of Science ®Google Scholar
• Mooney-Doyle, K., Deatrick, J. A., Ulrich, C. M., Meghani, S. H., & Feudtner, C. (2018). Parenting in childhood life-threatening illness: A mixed-methods study. Journal of Palliative Medicine, 21(2), 208–215. https://doi.org/10.1089/jpm.2017.0054
   PubMed Web of Science ®Google Scholar
• Murray, C. (2005). Children and young people’s participation and non-participation in research. Adoption & Fostering, 29(1), 57–66. https://doi.org/10.1177/030857590502900107
   Google Scholar
• Norwegian Directorate of Health. (2017). Veileder Om pårørende I Helse- Og Omsorgstjenesten. https://www.helsedirektoratet.no/veiledere/parorendeveileder
   Google Scholar
• Oulton, K., Gibson, F., Sell, D., Williams, A., Pratt, L., & Wray, J. (2016). Assent for children’s participation in research: Why it matters and making it meaningful: Assent for children’s participation in research. Child: Care, Health & Development, 42(4), 588–597. https://doi.org/10.1111/cch.12344
   PubMed Web of Science ®Google Scholar
• Rallison, L. B., & Raffin-Bouchal, S. (2013). Living in the in-between: Families caring for a child with a progressive neurodegenerative illness. Qualitative Health Research, 23(2), 194–206. https://doi.org/10.1177/1049732312467232
   PubMed Web of Science ®Google Scholar
• Shaw, P. A. (2021). Photo-elicitation and photo-voice: Using visual methodological tools to engage with younger children’s voices about inclusion in education. International Journal of Research & Method in Education, 44(4), 337–351. https://doi.org/10.1080/1743727X.2020.1755248
   Web of Science ®Google Scholar
• Shudy, M., de Almeida, M. L., Ly, S., Landon, C., Groft, S., Jenkins, T. L., & Nicholson, C. E. (2006). Impact of pediatric critical illness and injury on families: A systematic literature review. Pediatrics, 118(Supplement_3), S203–S218. https://doi.org/10.1542/peds.2006-0951B
   PubMedGoogle Scholar
• Tay, J., Widger, K., & Stremler, R. (2022). Self-reported experiences of siblings of children with life-threatening conditions: A scoping review. Journal of Child Health Care, 26(4), 517–530. https://doi.org/10.1177/13674935211026113
   PubMed Web of Science ®Google Scholar
• Together for Short Lives. (2013). A Core Care Pathway for Children with Life-Limiting and Life-Threatening Conditions. Together for short lives. https://www.togetherforshortlives.org.uk/changing-lives/supporting-care-professionals/care-pathways/
   Google Scholar
• Together for Short Lives. (2018). A Guide to children’s Palliative Care. https://www.togetherforshortlives.org.uk/app/uploads/2018/03/TfSL-A-Guide-to-Children%E2%80%99s-Palliative-Care-Fourth-Edition-5.pdf
   Google Scholar
• Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042
   PubMed Web of Science ®Google Scholar
• Twinkl. (2023). Twinkl Symbols. Retrieved June 17 from https://www.twinkl.no/symbols
   Google Scholar
• UNICEF. (2022). Convention on the rights of the child. https://www.unicef.org/child-rights-convention/convention-text?page_router=true#
   Google Scholar
• van Manen, M. (1997). Researching lived experience : Human science for an action sensitive pedagogy (2nd ed.). Althouse Press.
   Google Scholar
• van Manen, M. (2016). Phenomenology of practice: Meaning-giving methods in phenomenological research and writing. Routledge.
   Google Scholar
• Vatne, T. M., Rønning, A.-H. K., & Bang-Nes, R. (2021). Helsesykepleiere er nærmest til å følge opp søsken som pårørende. Sykepleien Forskning, 84799(84799), e–84799. https://doi.org/10.4220/Sykepleiens.2021.84799
   Google Scholar
• Verberne, L. M., Kars, M. C., Schouten van Meeteren, A. Y. N., Bosman, D. K., Colenbrander, D. A., Grootenhuis, M. A., & van Delden, J. J. M. (2017). Aims and tasks in parental caregiving for children receiving palliative care at home: A qualitative study. European Journal of Pediatrics, 176(3), 343–354. https://doi.org/10.1007/s00431-016-2842-3
   PubMed Web of Science ®Google Scholar
• Wawrzynski, S. E., Alderfer, M. A., Kvistad, W., Linder, L., Reblin, M., Guo, J.-W., & Cloyes, K. G. (2022). The social networks and social support of siblings of children with cancer. Children (Basel), 9(1), 113. https://doi.org/10.3390/children9010113
   PubMed Web of Science ®Google Scholar
• White, T. E., Hendershot, K. A., Dixon, M. D., Pelletier, W., Haight, A., Stegenga, K., Alderfer, M. A., Cox, L., Switchenko, J. M., Hinds, P., & Pentz, R. D. (2017). Family strategies to support siblings of pediatric hematopoietic stem cell transplant patients. Pediatrics, 139(2), 1. https://doi.org/10.1542/peds.2016-1057
   Web of Science ®Google Scholar
• Wilkins, K. L., & Woodgate, R. L. (2005). A review of qualitative research on the childhood cancer experience from the perspective of siblings: A need to give them a voice. Journal of Pediatric Oncology Nursing, 22(6), 305–319. https://doi.org/10.1177/1043454205278035
   PubMedGoogle 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), 1–165. https://doi.org/10.1186/s12904-020-00672-4
   PubMed Web of Science ®Google Scholar
• Wolfe, J., Jones, B. L., Kreicbergs, U., & Jankovic, M. (2018). Palliative care in pediatric oncology. Springer International Publishing AG. https://doi.org/10.1007/978-3-319-61391-8
   Google Scholar
• World Health Organization. (2016). Planning and Implementing Palliative Care Services: A Guide for Programme Managers. W. H. Organization. https://apps.who.int/iris/bitstream/handle/10665/250584/9789241565417-eng.pdf
   Google Scholar
• World Medical Association. (2013). World medical association declaration of Helsinki: Ethical principles for medical research involving human subjects. JAMA, 310(20), 2191–2194. https://doi.org/10.1001/jama.2013.281053
   PubMed Web of Science ®Google Scholar