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The School Experiences of Siblings of Children With Chronic Illness: Australian Parents’ Perceptions

Published online by Cambridge University Press:  02 April 2018

Lucy L. Gan ,
Alistair Lum ,
Claire E. Wakefield ,
Barbara M. Donnan ,
Glenn M. Marshall ,
Mary A. Burns ,
Adam Jaffe ,
Steven Leach ,
Daniel A. Lemberg  and
Joanna E. Fardell
Lucy L. Gan
Affiliation:
Kids Cancer Centre, Sydney Children's Hospital, New South Wales, Australia Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, Australia
Alistair Lum
Affiliation:
Kids Cancer Centre, Sydney Children's Hospital, New South Wales, Australia Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, Australia
Claire E. Wakefield
Affiliation:
Kids Cancer Centre, Sydney Children's Hospital, New South Wales, Australia Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, Australia
Barbara M. Donnan
Affiliation:
Kids Cancer Centre, Sydney Children's Hospital, New South Wales, Australia Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, Australia
Glenn M. Marshall
Affiliation:
Kids Cancer Centre, Sydney Children's Hospital, New South Wales, Australia Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, Australia
Mary A. Burns
Affiliation:
Kids Cancer Centre, Sydney Children's Hospital, New South Wales, Australia Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, Australia
Adam Jaffe
Affiliation:
Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, Australia
Steven Leach
Affiliation:
Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, Australia
Daniel A. Lemberg
Affiliation:
Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, Australia Department of Paediatric Gastroenterology, Sydney Children's Hospital, New South Wales, Australia
Joanna E. Fardell*
Affiliation:
Kids Cancer Centre, Sydney Children's Hospital, New South Wales, Australia Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, Australia
*
Address for correspondence: Joanna E. Fardell, Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, High St., Randwick NSW 2031, Australia. Email: [email protected]
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Abstract

Children with chronic illness often experience difficulties at school, yet little is known about the impact of the child's illness on siblings’ school experiences. This study investigated parents’ perceptions of siblings’ school experiences and school support. We conducted semi-structured telephone interviews with 27 parents of children with a chronic illness who had a sibling or siblings (4–25 years), representing the experiences of 31 siblings. Interviews were audio-recorded, transcribed, and analysed using content analysis. Parents believed that 14 of 31 (45.2%) siblings had school difficulties related to the ill child, such as increased anxiety or stress at school, lack of attention from teachers, and changes in behaviour as a result of increased carer responsibilities. Parents identified increased absenteeism due to the ill child's hospitalisation and the impact of parent absences on sibling school functioning. Parents described general and psychological support from the school, and the importance of monitoring the sibling at school and focusing on their unique needs. Overall, our findings suggest the need for a school-based sibling support model that combines psycho-education for siblings and school personnel, individualised sibling psychological support, and shared school and parent responsibility in normalising the sibling experience and providing consistent support.

Keywords

siblingschronic illnessschoolfamilyexperiencessupport
Type
Articles
Information
The Educational and Developmental Psychologist , Volume 35 , Issue 1 , July 2018 , pp. 36 - 50
Copyright
Copyright © Australian Psychological Society Ltd 2018 

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References

Alderfer, M.A., & Hodges, J.A. (2010). Supporting siblings of children with cancer: A need for family-school partnerships. School Mental Health, 2, 72–81.Google Scholar
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, 789–805 717p. doi:10.1002/pon.1638Google Scholar
Alderfer, M.A., Stanley, C., Conroy, R., Long, K.A., Fairclough, D.L., Kazak, A.E., & Noll, R.B. (2015). The social functioning of siblings of children with cancer: A multi-informant investigation. Journal of Pediatric Psychology, 40, 309–319. doi:10.1093/jpepsy/jsu079Google Scholar
Barrera, M., Fleming, C.F., & Khan, F.S. (2004). The role of emotional social support in the psychological adjustment of siblings of children with cancer. Child: Care, Health and Development, 30, 103–111. doi:10.1111/j.1365-2214.2003.00396.xGoogle Scholar
Berbis, J., Oudin, C., Alessandrini, M., Vercasson, C., Barlogis, V., Chambost, H., . . . Auquier, P. (2015). Quality of life in minor siblings of childhood leukemia survivors, long-term after diagnosis: A LEA study (for Leucemies de l'Enfant et de l'Adolescent — Childhood and adolescent leukemia). Psycho-Oncology, 24, 661–668.Google Scholar
Björk, M., Wiebe, T., & Hallström, I. (2005). Striving to survive: Families’ lived experiences when a child is diagnosed with cancer. Journal of Pediatric Oncology Nursing, 22, 265–275. doi:10.1177/1043454205279303Google Scholar
Broyd, B.P., Pritchard-Jones, K., Edwards, L., & Chambers, P. (Ed.). (2008). Pupils with cancer: A guide for teachers. London, UK: Royal Marsden NHS Foundation Trust.Google Scholar
Cancer Council NSW. (2015). Cancer in the school community. Sydney, Australia: Author. Retrieved from https://www.cancerwa.asn.au/resources/2015-07-21-Cancer-in-the-school-community-rev-ed.pdfGoogle Scholar
Clarke-Steffen, L. (1997). Reconstructing reality: Family strategies for managing childhood cancer. Journal of Pediatric Nursing: Nursing Care of Children and Families, 12, 278–287. doi:10.1016/S0882-5963(97)80045-0Google Scholar
Donnan, B.M., Webster, T., Wakefield, C.E., Dalla-Pozza, L., Alvaro, F., Lavoipierre, J., & Marshall, G.M. (2015). What about school? Educational challenges for children and adolescents with cancer. Australian Educational and Developmental Psychologist, 32, 23–40.CrossRefGoogle Scholar
Faux, S.A., Walsh, M., & Deatrick, J.A. (1988). Intensive interviewing with children and adolescents. Western Journal of Nursing Research, 10, 180–194. doi:10.1177/019394598801000206Google Scholar
French, A.E., Tsangaris, E., Barrera, M., Guger, S., Brown, R., Urbach, S., . . . Nathan, P.C. (2013). School attendance in childhood cancer survivors and their siblings. Journal of Pediatrics, 162, 160–165.Google Scholar
Gan, L.L., Lum, A., Wakefield, C.E., Nandakumar, B., & Fardell, J.E. (2017). School experiences of siblings of children with chronic illness: A systematic literature review. Journal of Pediatric Nursing: Nursing Care of Children and Families, 33, 23–32. doi:10.1016/j.pedn.2016.11.007Google Scholar
Gilligan, R. (1998). The importance of schools and teachers in child welfare. Child & Family Social Work, 3, 13–25. doi:10.1046/j.1365-2206.1998.00068.xCrossRefGoogle Scholar
Gjengedal, E., Rustøen, T., Wahl, A.K., & Hanestad, B.R. (2003). Growing up and living with cystic fibrosis: Everyday life and encounters with the health care and social services — A qualitative study. Advances in Nursing Science, 26, 149–159.Google Scholar
Hartling, L., Milne, A., Tjosvold, L., Wrightson, D., Gallivan, J., & Newton, A.S. (2014). A systematic review of interventions to support siblings of children with chronic illness or disability. Journal of Paediatrics and Child Health, 50, E26–E38. doi:10.1111/j.1440-1754.2010.01771.xGoogle Scholar
Holt, A. (2010). Using the telephone for narrative interviewing: A research note. Qualitative Research, 10, 113–121. doi:10.1177/1468794109348686Google Scholar
Incledon, E. (2015). A review of factors associated with mental health in siblings of children with chronic illness. Journal of Child Health Care, 19, 182–194. doi:10.1177/1367493513503584Google Scholar
Jackson, Y., & Frick, P.J. (1998). Negative life events and the adjustment of school-age children: Testing protective models. Journal of Clinical Child Psychology, 27, 370–380. doi:10.1207/s15374424jccp2704_1CrossRefGoogle ScholarPubMed
Jenholt Nolbris, M., & Ahlström, B.H. (2014). Siblings of children with cancer — Their experiences of participating in a person-centered support intervention combining education, learning and reflection: Pre- and post-intervention interviews. European Journal of Oncology Nursing, 18, 254–260. doi:https://doi.org/10.1016/j.ejon.2014.01.002Google Scholar
Kaplan, L.M., Kaal, K.J., Bradley, L., & Alderfer, M.A. (2013). Cancer-related traumatic stress reactions in siblings of children with cancer. Families, Systems & Health: The Journal of Collaborative Family HealthCare, 31, 205–217. doi:10.1037/a0032550Google Scholar
Kazak, A.E., Simms, S., & Rourke, M.T. (2002). Family systems practice in pediatric psychology. Journal of Pediatric Psychology, 27, 133–143. doi:10.1093/jpepsy/27.2.133Google Scholar
Knafl, K.A., Darney, B.G., Gallo, A.M., & Angst, D.B. (2010). Parental perceptions of the outcome and meaning of normalization. Research in Nursing & Health, 33, 87–98. doi:10.1002/nur.20367Google Scholar
Knafl, K.A., & Deatrick, J.A. (1986). How families manage chronic conditions: An analysis of the concept of normalization. Research in Nursing & Health, 9, 215–222. doi:10.1002/nur.4770090306Google 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, 102–116. doi:10.1016/j.pedn.2014.10.010CrossRefGoogle ScholarPubMed
Kobayashi, K., Hayakawa, A., & Hohashi, N. (2015). Interrelations between siblings and parents in families living with children with cancer. Journal of Family Nursing, 21, 119–148. doi:10.1177/1074840714564061Google Scholar
Labay, L.E., & Walco, G.A. (2004). Brief report: Empathy and psychological adjustment in siblings of children with cancer. Journal of Pediatric Psychology, 29, 309–314.Google Scholar
Lamb, E., & Holley-Boen, W. (2016). School support for siblings of patients with cancer. New Zealand Journal of Counselling, 36, 16–34.Google Scholar
Lobato, D.J., & Kao, B.T. (2002). Integrated sibling-parent group intervention to improve sibling knowledge and adjustment to chronic illness and disability. Journal of Pediatric Psychology, 27, 711–716. doi:10.1093/jpepsy/27.8.711Google Scholar
Long, K.A., Marsland, A.L., Wright, A., & Hinds, P. (2015). Creating a tenuous balance: Siblings’ experience of a brother's or sister's childhood cancer diagnosis. Journal of Pediatric Oncology Nursing, 32, 21–31. doi:10.1177/1043454214555194CrossRefGoogle ScholarPubMed
Mason, J. (2004). In Lewis-Beck, M.S., Bryman, A., & Liao, T.F. (Eds.), The SAGE encyclopedia of social science research methods (vol. 3, pp. 1021–1021). Thousand Oaks, CA: Sage.Google Scholar
McLoone, J.K., Wakefield, C.E., & Cohn, R.J. (2013). Childhood cancer survivors’ school (re)entry: Australian parents’ perceptions. European Journal of Cancer Care, 22, 484–492. doi:10.1111/ecc.12054Google Scholar
Miles, M.B., & Huberman, A.M. (1994). Qualitative data analysis: An expanded sourcebook. London, UK: Sage.Google Scholar
Murray, J.S. (2001). Social support for school-aged siblings of children with cancer: A comparison between parent and sibling perceptions. Journal of Pediatric Oncology Nursing, 18, 90–104. doi:10.1177/104345420101800302Google Scholar
Nolbris, M.J., Enskär, K., & Hellström, A.L. (2007). Experience of siblings of children treated for cancer. European Journal of Oncology Nursing, 11, 106–112.Google Scholar
O'Brien, I., Duffy, A., & Nicholl, H. (2009). Impact of childhood chronic illnesses on siblings: A literature review. British Journal of Nursing, 18, 1358–1365.Google Scholar
Prchal, A., & Landolt, M.A. (2012). How siblings of pediatric cancer patients experience the first time after diagnosis: a qualitative study. Cancer Nursing, 35, 133–140. doi:10.1097/ncc.0b013e31821e0c59Google Scholar
Robinson, C.A. (1993). Managing life with a chronic condition: The story of normalization. Qualitative Health Research, 3, 6–28. doi:10.1177/104973239300300102Google Scholar
Roffey, S. (2004). The home-school interface for behaviour: A conceptual framework for co-constructing reality. Educational and Child Psychology, 21, 95–108.Google Scholar
Samson, K., Rourke, M.T., & Alderfer, M.A. (2016). A qualitative analysis of the impact of childhood cancer on the lives of siblings at school, in extracurricular activities, and with friends. Clinical Practice in Pediatric Psychology, 4, 362–372. doi:10.1037/cpp0000161Google Scholar
Saunders, B., Sim, J., Kingstone, T., Baker, S., Waterfield, J., Bartlam, B., . . . Jinks, C. (2017). Saturation in qualitative research: Exploring its conceptualization and operationalization. Quality & Quantity. doi:10.1007/s11135-017-0574-8Google Scholar
Shochet, I.M., Smyth, T., & Homel, R. (2007). The impact of parental attachment on adolescent perception of the school environment and school connectedness. Australian and New Zealand Journal of Family Therapy, 28, 109–118. doi:10.1375/anft.28.2.109Google Scholar
Sidhu, R., Passmore, A., & Baker, D. (2005). An investigation into parent perceptions of the needs of siblings of children with cancer. Journal of Pediatric Oncology Nursing, 22, 276–287 212p.Google Scholar
Srivastava, P., & Hopwood, N. (2009). A practical iterative framework for qualitative data analysis. International Journal of Qualitative Methods, 8, 76–84. doi:10.1177/160940690900800107Google Scholar
Sturges, J.E., & Hanrahan, K.J. (2004). Comparing telephone and face-to-face qualitative interviewing: A research note. Qualitative Research, 4, 107–118. doi:10.1177/1468794104041110Google 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, 349–357. Retrieved from: http://cdn.elsevier.com/promis_misc/ISSM_COREQ_Checklist.pdf. doi:10.1093/intqhc/mzm042Google Scholar
Vermaes, I.P.R., Van Susante, A.M.J., & Van Bakel, H.J.A. (2012). Psychological functioning of siblings in families of children with chronic health conditions: A meta-analysis. Journal of Pediatric Psychology, 37, 166–184. doi:10.1093/jpepsy/jsr081Google Scholar
Wakefield, C.E., McLoone, J., Butow, P., Lenthen, K., & Cohn, R.J. (2013). Support after the completion of cancer treatment: Perspectives of Australian adolescents and their families. European Journal of Cancer Care, 22, 530–539. doi:10.1111/ecc.12059Google 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, 305–319. doi:10.1177/1043454205278035Google Scholar
Wilkinson, R.B. (2004). The role of parental and peer attachment in the psychological health and self-esteem of adolescents. Journal of Youth and Adolescence, 33, 479–493. doi:10.1023/b:joyo.0000048063.59425.20Google Scholar
Woodgate, R.L. (2006). Siblings’ experiences with childhood cancer: A different way of being in the family. Cancer Nursing, 29, 406–414Google Scholar