Research

Siblings Australia has played an important role in areas of research to inform social policy makers about the needs of siblings. Additional research activity has also been conducted both nationally and internationally. We have consolidated our own research and curated a selection of external research below.

2023 – White Paper: Why are siblings important to achieving disability policy goals in Australia? 
The White Paper examines the central supports currently provided by siblings against the policy areas in Australia’s Disability Strategy 2021-2031, despite a lack of recognition of the sibling relationship, or support to strengthen those relationships.

2018 – Final Siblings ILC Mapping Project Report
Supported by the NDIS, this project explored the sibling support available to siblings of children and adults with disability.

2017 – Final Report SDF 
Supported by the Sector Development Fund of the NDIS, this project explored the needs of adult siblings and developed both online and face-to-face support opportunities.

2015-2016 – SibWorks evaluation 
The articles below came from the evaluation of SibWorks undertaken by Adelaide University’s psychology department, in conjunction with Siblings Australia. If you would like a hard copy of either article, please contact us

Roberts, RM, Ejova, A, Giallo, R, Strohm, K, Lillie, M & Fuss, B. (2015). A controlled trial of the SibworkS group program for siblings of children with special needs. Research in Developmental Disabilities. 43-44, 21-31.

Rachel M. Roberts, Anastasia Ejova, Rebecca Giallo, Kate Strohm & Meredith E. Lillie (2016). Support group programme for siblings of children with special needs: predictors of improved emotional and behavioural functioning, Disability and Rehabilitation, DOI: 10.3109/09638288.2015.1116621

2013 – Summary of sibling support phone-in
Siblings Australia conducted a phone-in to gauge families’ thoughts on the availability of sibling support and what would help.

2012 – Report from surveys re: aggression
Report from surveys re: aggression. For some time, Siblings Australia has been concerned about the issue of siblings being physically hurt by a brother or sister with disability. We developed surveys for parents, siblings and service providers and whilst we understand this is a sensitive topic, we also believe that it is worthy of consideration. We hope that this small research project will lead to more extensive research, through which we can gain more insight into the support needs of families.

2009 – Scoping Project – Report 
This research investigated what sibling programs were operating around Australia, what models were used and what workforce development was needed. Over 100 providers of sibling programs responded and reinforced the idea that there needed to be more collaboration, more resources and skill development as well as more funding for these programs.

2009 – Final adult sibling project report   
This research, supported by Julia Farr Purple Orange explored the concerns and needs of adult siblings of people with disability.

2008 – ARACY collaboration report    
Siblings Australia had long been concerned about the lack of collaboration and co-ordination around research into sibling issues and models of support. After contacting researchers around the country we established a group of researchers and together we were successful in gaining a small encouragement grant to facilitate some collaboration between researchers and service providers.

2007 – Internal Evaluation of SibworkS
This report came from an internal evaluation we carried out on a very early version of SibWorks.

The below outlines additional research, and may be accessible via your University or other educational institution’s library. 

Andreas Brouzos, Stephanos P. Vassilopoulos & Christina Tassi (2017) A Psychoeducational Group Intervention for Siblings of Children With Autism Spectrum Disorder, The Journal for Specialists in Group Work, 42:4, 274-298.

Ariella Meltzer (2017) ‘I couldn’t just entirely be her sister’: the relational and social policy implications of care between young adult siblings with and without disabilities, Journal of Youth Studies, 20:8, 1013-1027.

David Tzuriel, Dikla Hanuka-Levy (2014) Siblings’ Mediated Learning Strategies in Families With and Without Children With Intellectual Disabilities. Am J Intellect Dev Disabil, 119 (6): 565–588.

Dinleyici, M., & Dağlı, F. Ş. (2018). Evaluation of quality of life of healthy siblings of children with chronic disease. Turk pediatri arsivi, 53(4), 205–213.

Dyson, L.L. (1998). A Support Program for Siblings of Children with Disabilities: What Siblings Learn and What They Like. Psychology in the Schools, 35(1), 57-66.

Elliott L, Thompson KA, Fobian AD (2020) A Systematic Review of Somatic Symptoms in Children With a Chronically Ill Family Member. Psychosomatic Medicine, 82(4):366-376.

Fisman, S., Wolf, L., Ellison, D. & Freeman, T. (2000). A Longitudinal Study of Siblings of Children with Chronic Disabilities. Canadian Journal of Psychiatry, 45, 369-375.

Fisman, S., Wolf, L., Ellison, D. Gillis, B., Freeman, T. & Szatmari, P. (1996). Risk and Protective Factors Affecting with Adjustment of siblings of children with chronic disabilities. Journal of American Academy of Child & Adolescent Psychiatry, 35 (11), 1532- 1541.

Giallo, R. & S, Gavidia-Payne. (2006). Child, parent and family factors as predictors of adjustment for siblings of children with a disability. Journal of Intellectual Disability Research, 50 (12), 937-948.

Goudie A, Havercamp S, Jamieson B, Sahr T (2013) Assessing functional impairment in siblings living with children with disability. Pediatrics, 132(2):e476-83.

Hatfield, A.B., Lefley, H.P (2005) Future Involvement of Siblings in the Lives of Persons with Mental Illness. Community Ment Health J 41, 327–338.

Hogan, D.P., Park, J.M. & Goldscheider, F.K. (2003). The health consequences of a disabled sibling for school-age children. Research in social science and disability, 3, 185-205.

Hollidge, C. (2001). Psychological Adjustment of Siblings to a Child with Diabetes. Health and Social Work, 26 (1), 15-25.

Houtzager, BA. & Grootenhuis, MA. & Hoekstra-Weebers, JEHM. Et al. (2005). One Month After Diagnosis: Quality of Life, Coping and Previous Functioning in Siblings of Children with Cancer. Child: Care, Health and Development, 31 (1), 75-87.

Koukouriki, E., Soulis, SG (2020) Self-reported Health-Related Quality of Life (HRQOL) and Anxiety Among Greek School-Age Siblings of Individuals with Autism Spectrum Disorders (ASD) in Relation to Parental Mental Health and Social Support. J Autism Dev Disord 50, 2913–2930.

Lindahl, J, Stollon, N, Wu, K, et al (2019) Domains of planning for future long-term care of adults with intellectual and developmental disabilities: Parent and sibling perspectives. J Appl Res Intellect Disabil, 32: 1103– 1115. 

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(8), 711-716.

McLinden, S.E., Miller, L.M. &Deprey, J.M (1991). Effects of a support group for siblings of children with special needs. Psychology in the Schools, 28, 230-237.

Miller, S. (1996). Living with a disabled sibling – a review. Paediatric Nursing, 8 (8), 21-24.

Morrison, L. (1997). Stress and siblings. Paediatric Nursing, 9 (4), 26-27.

Munch, S. & Levick, J. (2001). “I’m Special, Too”: Promoting Sibling Adjustment in the Neonatal Intensive Care Unit. Health and Social Work, 26 (1), 58-64.

Murray, J.S. (2002). A Qualitative Exploration of Psychosocial Support for Siblings of Children with Cancer. Journal of Pediatric Nursing, 17 (5), 327-337.

Nabors, L, Liddle, M, Graves, ML, Kamphaus, A, Elkins, JL (2019) A family affair: Supporting children with chronic illnesses. Child Care Health Dev, 45: 227– 233. 

Pitman, E. & Matthey, S. (2004). The SMILES Program: A Group Program for Children with Mentally Ill Parents or Siblings. American Journal of Orthopsychiatry, 74 (3), 383-388.

Pit-ten Cate, I.M. &Loots, G.M.P. (2000). Experiences of Siblings of Children with Physical Disabilities: An Empirical Investigation. Disability and Rehabilitation, 22 (9), 399-408.

Rivers, JW. & Stoneman, Z. (2003). Sibling Relationships when a Child has Autism: Marital Stress and Support Coping. Journal of Autism and Developmental Disorders, 33 (4), 383- 394.

Roberts RM, Ejova A, Giallo R, Strohm K, Lillie ME (2016) Support group programme for siblings of children with special needs: predictors of improved emotional and behavioural functioning. Disabil Rehabil, 38(21):2063-72.

Sanderson, K. A., Burke, M. M., Urbano, R. C., Arnold, C. K., and Hodapp, R. M. (2019) Getting by with a little help from my friends: siblings report on the amount of informal support received by adults with disabilities. Journal of Intellectual Disability Research, 63: 1097– 1110. 

Sharpe, D. & Rossiter, L. (2002). Siblings of Children with a Chronic Illness: A Meta- Analysis. Journal of Pediatric Psychology, 27 (8), 699-710.

Shivers CM, McGregor C, Hough A (2019) Self-reported stress among adolescent siblings of individuals with autism spectrum disorder and Down syndrome. Autism, 23(1):112-122

Takataya K, Mizuno E, Kanzaki Y, Sakai I, Yamazaki Y (2019) Feelings of siblings having a brother/sister with Down syndrome. Arch Psychiatr Nurs, 33(4):337-346.

Williams, P.D., Hanson, S., Karlin, R., Ridder, L., Liebergen, A., Olson, J., Barnard, M.U., & Tobin-Rommelhart, S. (1997). Outcomes of a nursing intervention for siblings of chronically ill children: A pilot study. Journal of the Society of Pediatric Nurses, 2 (3), 127-137.

Young, S. (2007). The forgotten siblings. Australian and New Zealand Journal of Family Therapy, 28 (1), 21-27.

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