Abstracts
Abstract
Family quality of life (FQOL) is a concept that is gaining increasing importance in family support programmes. However, for some countries, this concept has been insufficiently explored in relation to families with children with intellectual and developmental disabilities. The aim of this study was to ascertain the perceived QOL of siblings of children with profound intellectual and multiple disabilities (PIMD) living in Poland. The study relies on a qualitative research approach. Semi-structured interviews were conducted with 18 siblings aged 6 to 15, followed by thematic analysis. The siblings identified the following nine domains as dimensions that impacted their QOL: joint activities, mutual understanding, private time, acceptance, forbearance, effect on well-being, exchanging experiences, social support, and dealing with the outside world. The children described both positive and negative experiences, indicating that having a sibling with intellectual and developmental disabilities affected their QOL in diverse ways.
Keywords:
- quality of life,
- siblings,
- children with profound intellectual and multiple disabilities,
- Poland,
- qualitative research,
- family studies
Appendices
Bibliography
- Barak-Levy, Y., Goldstein, E., & Weinstock, M. (2010). Adjustment characteristics of healthy siblings of children with autism. Journal of Family Studies, 16(2), 155–164. https://doi.org/10.5172/jfs.16.2.155
- Bat-Chava, Y., & Martin, D. (2002). Sibling relationships of deaf children: the impact of child and family characteristics. Rehabilitation Psychology, 47(1), 73–91. https://doi.org/10.1037/0090-5550.47.1.73
- Ben-Arieh, A., & Frones, I. (2007). Indicators of children’s well being: Concepts, indices and usage. Social Indicators Research, 80(1), 1–4. https://doi.org/10.1007/s11205-006-9069-z
- Boelsma, F., Caubo‐Damen, I., Schippers, A., Dane, M., & Abma, T. A. (2017). Rethinking FQoL: The dynamic interplay between individual and family quality of life. Journal of Policy and Practice in Intellectual Disabilities, 14(1), 31–38. https://doi.org/10.1111/jppi.12224
- Boelsma, F., Schippers, A., Dane, M., & Abma, T. A. (2018). “Special” families and their “normal” daily lives: Family quality of life and the social environment. International Journal of Child, Youth and Family Studies, 9(4), 107–124. https://doi.org/10.18357/ijcyfs94201818643
- Brown, R. I. (2016). Quality of life: Challenges to research, practice and policy. Journal of Policy and Practice in Intellectual Disabilities, 14(1), 7–14. https://doi.org/10.1111/jppi.12185
- Brown, R., Davey, R., Shearer, J., & Kyrkou, M. (2004). Family quality of life in Australia. In A. P. Turnbull, I. Brown, H. R. Turnbull, & E. de Lorenzo (Eds.), Families and people with mental retardation and quality of life: international perspectives (pp. 223–264). American Association on Mental Retardation.
- Brown, R., & Faragher, R. (2018). Quality of life in the wider world. Challenges from the field of intellectual disabilities. In R. Brown & R. Faragher (Eds.), Quality of life and intellectual disabilities: Knowledge application to other social and educational challenges (pp. 3–18). Nova Science.
- Brown, I., Keith, K. D., & Schalock, R. L. (2004). Quality of life conceptualization, measurement, and application: Validation of the SIRG-QOL consensus principles. Journal of Intellectual Disability Research, 48, 451.
- Cameron, H. (2005). Asking the tough questions: A guide to ethical practices in interviewing young children. Early Child Development and Care, 175(6), 597–610. https://doi.org/10.1080/03004430500131387.
- Chan, J. Y. N., & Lai, K. Y. C. (2016). Psychological adjustment of siblings of children with autism spectrum disorder in Hong Kong. East Asian Archives of Psychiatry, 26(4), 141–147.
- Clarke, V., Braun, V., & Hayfield, N. (2015). Thematic analysis. In J. A. Smith (Ed.), Qualitative psychology: A practical guide to research methods (pp. 222–248). SAGE.
- Corbin, J., & Strauss, A. (2008). Basics of qualitative research (3rd ed.). Sage.
- Creswell, J. W. (2013). Qualitative inquiry & research design: Choosing among five approaches (3rd ed.). Sage.
- Creswell, J. W., & Creswell, J. D. (2020). 30 essential skills for the qualitative researcher (2nd ed.). Sage.
- Creswell, J. W., & Creswell, J. D. (2022). Research design qualitative, quantitative, and mixed methods approaches (6th ed.). Sage.
- Davys, D., Mitchell, D., & Haigh, C. (2016). Adult siblings consider the future: Emergent themes. Journal of Applied Research in Intellectual Disabilities, 29(3), 220–230. https://doi.org/10.1111/jar.12172
- Diener, M. L., Anderson, L., Wright, C. A., & Dunn, M. L. (2015). Sibling relationships of children with autism spectrum disorder in the context of everyday life and a strength-based program. Journal of Child and Family Studies, 24, 1060–1072. https://doi.org/10.1007/s10826-014-9915-6
- Dodd, L.W. (2004). Supporting the siblings of young children with disabilities. British Journal of Special Education, 31(1), 41–49. https://doi.org/10.1111/j.0952-3383.2004.00325.x
- Donley, T., King, D. M., Nyathi, N., Okafor, A., & Mbizo, J. (2018). Socioeconomic status, family functioning and delayed care among children with special needs. Social Work in Public Health, 33(6), 366–381. https://doi.org/10.1080/19371918.2018.1504703
- Eiser, C., Vance, Y. H., & Seamark, D. (2000). The development of a theoretically driven generic measure of quality of life for children aged 6–12 years: A preliminary report. Child: Care, Health and Development, 26(6), 445–456. https://doi.org/10.1046/j.1365-2214.2000.00177.x
- Eiser, C., & Morse, R. (2001). Can parents rate their child’s health-related quality of life? Results of a systematic review. Quality of Life Research, 10(4), 347–357. https://doi.org/10.1023/a:1012253723272
- Emerson, E., McCulloch, A., Graham, H., Blacher, J., Llwellyn, G. M., & Hatton, C. (2010). Socioeconomic circumstances and risk of psychiatric disorders among parents of children with early cognitive delay. American Journal on Intellectual and Developmental Disabilities,115(1), 30–42. https://doi.org/10.1352/1944-7558-115.1.30
- Fleary, S. A., & Heffer, R. W. (2013). Impact of growing up with a chronically ill sibling on well siblings’ late adolescent functioning. International Scholarly Research Notices. https://doi.org/10.5402/2013/737356
- Floyd, F. J., Purcell, S. E., Richardson, S. S., Kupersmidt, J. B., & Abbeduto, L. (2009). Sibling relationship quality and social functioning of children and adolescents with intellectual disability [Research article]. American Journal on Intellectual and Developmental Disabilities, 114(2), 110–127. https://doi.org/10.1352/2009.114.110-127
- Francisco Mora, C., Ibañez, A., & Balcells-Balcells, A. (2020). State of the art of family quality of life in early care and disability: A systematic review. International Journal of Environmental Research and Public Health, 17(19), Article 7220. https://doi.org/10.3390/ijerph17197220
- Gardiner, E., & Iarocci, G. (2015). Family quality of life and ASD: The role of child adaptive functioning and behavior problems. Autism Research, 8(2), 199–213. https://doi.org/10.1002/aur.1442
- Guite, J., Lobato, D., Kao, B., & Plante, W. (2004). Discordance between sibling and parent reports of the impact of chronić illness and disability on siblings. Children’s Health Care, 33(1), 77–92. https://doi.org/10.1207/s15326888chc3301_5
- Hall, S. A., & Rossetti, Z. (2018). The roles of adult siblings in the lives of people with severe intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 31(3), 423–434. https://doi.org/10.1111/jar.12421
- Hastings, R. P. (2016). Do children with intellectual and developmental disabilities have a negative impact on other family members? The case for rejecting a negative narrative. In R. M. Hodapp & D. J. Fidler (Eds.), International Review of Research in Developmental Disabilities: Fifty Years of Research in Intellectual and Developmental Disabilities (pp. 165–194). Elsevier Academic Press. https://doi.org/10.1016/bs.irrdd.2016.05.002
- Hayden, N. K., Hastings, R. P., & Bailey, T. (2023). Behavioural adjustment of children with intellectual disability and their sibling is associated with their sibling relationship quality. Journal of Intellectual Disability Research, 67(4), 310–322. https://doi.org/10.1111/jir.13006
- Hodapp, R. M., Sanderson, K. A., Meskis, S. A., & Casale, E. G. (2017). Adult siblings of persons with intellectual disabilities: Past, present, and future. In R. M. Hodapp, & D. J. Fidler (Eds.), International review of research in developmental disabilities: Vol. 53, (pp. 163–202). Academic Press. https://doi.org/10.1016/bs.irrdd.2017.08.001
- Hostyn, I., & Maes, B. (2013). Interaction with a person with profound intellectual and multiple disabilities: A case study in dialogue with an experienced staff member. Journal of Intellectual & Developmental Disability, 38(3), 189–204. https://doi.org/10.3109/13668250.2013.798400
- Houtzager, B. A., Oort, F. J., Hoekstra-Weebers, J. E. H. M., Caron, H. N., Grootenhuis, M. A., & Last, B. F. (2004). Coping and family functioning predict longitudinal psychological adaptation of siblings of childhood cancer patients. Journal of Pediatric Psychology, 29(8), 591–605. https://doi.org/10.1093/jpepsy/jsh061
- 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. Pediatric Hematology and Oncology, 22(1), 25–40. https://doi.org/10.1080/08880010590896233
- Irwin, L. G., & Johnson, J. (2005). Interviewing young children: Explicating our practices and dilemmas. Qualitative Health Research, 15(6), 821–831. https://doi.org/10.1177/1049732304273862
- Kao, B. Romero-Bosch, L. Plante, W. & Lobato, D. (2012). The experiences of Latino siblings of children with developmental disabilities. Child: Care, Health and Development, 38(4), 545–552. https://doi.org/10.1111/j.1365-2214.2011.01266.x
- Krause, A., Żyta, A., & Nosarzewska, S. (2010). Normalizacja środowiska społecznego osób z niepełnosprawnością intelektualną [Normalization of the social environment of people with intellectual disabilities]. Akapit.
- Kruithof, K., Willems, D., van Etten-Jamaludin, F., & Olsman, E. (2020). Parents’ knowledge of their child with profound intellectual and multiple disabilities: An interpretative synthesis. Journal of Applied Research in Intellectual Disabilities, 33(6), 1141–1150. https://doi.org/10.1111/jar.12740
- Lee, C. E., & Burke M. M. (2018). Caregiving roles of siblings of adults with intellectual and developmental disabilities: A systematic review. Journal of Policy and Practice in Intellectual Disabilities, 15(3), 237–246. https://doi.org/10.1111/jppi.12246
- Lee, C. E., Burke, M. M., & Stelter, C. R. (2019). Exploring the perspectives of parents and siblings toward future planning for individuals with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 57(3), 198–211. https://doi.org/10.1352/1934-9556-57.3.198
- Lindahl, J., Stollon, N., Wu, K., Liang, A., Changolkar, S., Steinway, C., Trachtenberg, S., Coccia, A., Devaney, M., & Jan, S. (2019). Domains of planning for future long-term care of adults with intellectual and developmental disabilities: Parent and sibling perspectives. Journal of Applied Research in Intellectual Disabilities, 32(5), 1103–1115. https://doi.org/10.1111/jar.12600
- 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. https://doi.org/10.1093/jpepsy/27.8.711
- Luijkx, J., van der Putten, A. A. J., & Vlaskamp, C. (2016). “I love my sister, but sometimes I don’t”: A qualitative study into the experiences of siblings of a child with profound intellectual and multiple disabilities. Journal of Intellectual and Developmental Disability, 41(4), 279–288. https://doi.org/10.3109/13668250.2016.1224333
- McConkey, R., O’Hagan, P., & Corcoran, J. (2023). The impact of a family-centred intervention for parents of children with developmental disabilities: A model project in rural Ireland. Children, 10(2), Article 175. https://doi.org/10.3390/children10020175
- McHale, S. M., Updegraff, K. A., & Feinberg, M. E. (2016). Siblings of youth with autism spectrum disorders: Theoretical perspectives on sibling relationships and individual adjustment. Journal of Autism and Developmental Disorders, 46(2), 589–602. https://doi.org/10.1007/s10803-015-2611-6
- McHale, S. M, Updegraff, K. A, & Whiteman, S. D. (2012). Sibling relationships and influences in childhood and adolescence. Journal of Marriage and Family, 74(5), 913–930. https://doi.org/10.1111/j.1741-3737.2012.01011.x
- Mestre, T. D., Lopes, M. J., Mestre, D. M., Ferreira, R. F., Costa, A. P., & Caldeira, E. V. (2024). Impact of family-centered care in families with children with intellectual disability: A systematic review. Heliyon, 10(7), e28241. https://doi.org/10.1016/j.heliyon.2024.e28241
- Miles, M. B., Huberman, A. M., & Saldana, J. (2014). Qualitative data analysis: A methods sourcebook. Sage.
- Mouzourou, C., Santos, R. M., & Gaffney, J. S. (2011). At home with disability: One family’s three generations narrate autism. International Journal of Qualitative Studies in Education, 24(6), 693–715. https://doi.org/10.1080/09518398.2010.529841
- Moyson, T., & Roeyers, H. (2012). ‘The overall quality of my life as a sibling is all right, but of course, it could always be better’. Quality of life of siblings of children with intellectual disability: The siblings’ perspectives. Journal of Intellectual Disability Research, 56(1) 87–101. https://doi.org/10.1111/j.1365-2788.2011.01393.x
- Múries-Cantán, O., Giné, C., Brown, R. I., Baqués Aguiar, N., & Schippers, A. P. (2023). Siblings of children with intellectual and developmental disabilities: Quality of life perceptions from Catalonia. Journal of Policy and Practice in Intellectual Disabilities, 20(2), 192–204. https://doi.org/10.1111/jppi.12451
- Múries‐Cantán, O., Schippers, A., Giné, C., & Blom‐Yoo, H. (2022). Siblings of people with intellectual and developmental disabilities: A systematic review on their quality of life perceptions in the context of a family. International Journal of Developmental Disabilities, 69(6), 797–810. https://doi.org/10.1080/20473869.2022.2036919
- Nakken, H., & Vlaskamp, C. (2007). A need for a taxonomy for profound intellectual and multiple disabilities. Journal of Policy and Practice in Intellectual Disabilities, 4(2), 83–87. https://doi.org/10.1111/j.1741-1130.2007.00104.x
- Naylor, A., & Prescott, P. (2004). Invisible children? The need for support groups for siblings of disabled children. British Journal of Special Education, 31(4), 199–206. https://doi.org/10.1111/j.0952-3383.2004.00355.x
- Nijs, S., Vlaskamp, C., & Maes, B. (2016). Children with PIMD in interaction with peers with PIMD or siblings. Journal of Intellectual Disability Research, 60(1), 28–42. https://doi.org/10.1111/jir.12231
- Okma, K., van Dijken, A., Vergeer, M., & Naafs, L. (2015). QuickScan naar de ondersteuningsbehoefte van zorgintensieve gezinnen: Visiedocument deel 2: Brussen [Quickscan into the support needs of families with a child with a disability. Part two: siblings]. Nederlands Jeugd Instituut. Retrieved from chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://disabilitystudies.nl/sites/default/files/beeld/onderwijs/quickscan-ondersteuningsbehoefte-zorgintensieve-gezinnen-deel2-brussenpdf.pdf
- Petalas, M. A., Hastings, R. P., Nash, S., & Duff, S. (2015). Typicality and subtle difference in sibling relationships: Experiences of adolescents with autism. Journal of Child and Family Studies, 24(1), 38–49. https://doi.org/10.1007/s10826-013-9811-5
- Poston, D., Turnbull, A., Park, J., Mannan, H., Marquis, J., & Wang, M. (2003). Family quality of life: A qualitative inquiry. Mental Retardation, 41(5), 313–328. https://doi.org/10.1352/0047-6765(2003)41<313:FQOLAQ>2.0.CO;2
- Ravindran, N., & Myers, B. J. (2011). Cultural influences on perceptions of health, illness, and disability: A review and focus on autism. Journal of Child and Family Studies, 21(2), 311–319. https://doi.org/10.1007/s10826-011-9477-9
- Schippers, A., Zuna, N., & Brown, I. (2015). A proposed framework for an integrated process of improving quality of life. Journal of Policy and Practice in Intellectual Disabilities, 12(3), 151–161. https://doi.org/10.1111/jppi.12111
- Seligman, M., & Darling, R. B. (2009). Ordinary families, special children: A systems approach to childhood disability (3rd ed.). Guilford.
- Smith, T., & Perry, A. (2005). A sibling support group for brothers and sisters of children with autism. Journal on Developmental Disabilities, 11(1), 77–88.
- Stalker, K., & Connors, C. (2004). Children’s perceptions of their disabled siblings: She’s different but it’s normal for us. Children & Society, 18(3), 218–230. https://doi.org/10.1002/CHI.794
- Stoneman, Z. (2001). Supporting positive sibling relationships during childhood. Mental Retardation and Developmental Disabilities Research Reviews, 7(2), 134–142. https://doi.org/10.1002/mrdd.1019
- Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Sage.
- Summers, J. A., Poston, D. J., Turnbull, A. P., Marquis, J., Hoffman, L., Mannan, H., & Wang, M. (2005). Conceptualising and measuring family quality of life. Journal of Intellectual Disability Research, 49(10), 777–783. https://doi.org/10.1111/j.1365-2788.2005.00751.x
- Todd, S., Young, P., Shearn, J., & Jones, S. (2004). Family quality of life in Wales. In A. P. Turnbull, I. Brown, & H. R. Turnbull, III (Eds.), Families and people with mental retardation and quality of life: International perspectives (pp. 103–150). American Association on Mental Retardation.
- Tsai, H.-W. J., Cebula, K., & Fletcher-Watson, S. (2016). Influences on the psychosocial adjustment of siblings of children with autism spectrum disorder in Taiwan and the United Kingdom. Research in Autism Spectrum Disorders, 32, 115–129. https://doi.org/10.1016/j.rasd.2016.09.007
- Turnbull, A. P., Brown, I., & Turnbull, R. (2004). Families and people with mental retardation and quality of life: International perspectives. American Association on Mental Retardation.
- Walton, K. M., & Ingersoll, B. R. (2015). Psychosocial adjustment and sibling relationships in siblings of children with autism spectrum disorder: Risk and protective factors. Journal of Autism and Developmental Disorders, 45(9), 2764–2778. https://doi.org/10.1007/s10803-015-2440-7
- Wang, M., Mannan, H., Poston, D., Turnbull, A. P., & Summers, J. A. (2004). Parents’ perceptions of advocacy activities and their impact on family quality of life. Research & Practice for Persons with Severe Disabilities, 29(2), 144–155. https://doi.org/10.2511/rpsd.29.2.144
- Zaidman-Zait, A., Yechezkiely, M., Regev, D. (2020). The quality of the relationship between typically developing children and their siblings with and without intellectual disability: Insights from children’s drawings. Research in Developmental Disabilities, 93(6), Article 103537. https://doi.org/10.1016/j.ridd.2019.103537
- Zuna, N., Brown, I., & Brown, R. (2018). Family quality of life in intellectual and developmental disabilities: A support-based framework to enhance quality of life in other families. In R. I. Brown & R. M. Faragher (Eds.), Quality of life and intellectual disability. Knowledge application to other social and educational challenges (pp. 91–119). Nova Science.