The importance of assessing parent stress in families with children with severe neuromotor and intellectual disability – a pilot study

References

• Abidin, R. R. (1995). Parenting Stress Index (PSI) manual. 3rd ed. Psychological Assessment Resources Inc.
   Google Scholar
• Abidin, R., & Brunner, J. (1995). Development of a parenting alliance inventory. Journal of Clinical Child Psychology, 24(1), 31–40. https://doi.org/10.1207/s15374424jccp2401_4
   Web of Science ®Google Scholar
• American Psychiatric Association (APA). (2014). Diagnostic and statistical manual of mental disorders (DSM‐5), Italian version. American Psychiatric Association Publishing.
   Google Scholar
• Arora, S., Goodall, S., Viney, R., Einfeld, S, & MHYPEDD Team. (2020). Health-related quality of life amongst primary caregivers of children with intellectual disability. Journal of Intellectual Disability Research: JIDR, 64(2), 103–116. https://doi.org/10.1111/jir.12701.
   PubMed Web of Science ®Google Scholar
• Ashworth, M., Palikara, O., & Van Herwegen, J. (2019). Comparing parental stress of children with neurodevelopmental disorders: The case of Williams syndrome, Down syndrome, and autism spectrum disorders. Journal of Applied Research in Intellectual Disabilities, 32(5), 1047–1057. https://doi.org/10.1111/jar.12594.
   PubMed Web of Science ®Google Scholar
• Azad, G., Blacher, J., & Marcoulides, G. A. (2013). Mothers of children with developmental disabilities: Stress in early and middle childhood. Research in Developmental Disabilities, 34(10), 3449–3459. https://doi.org/10.1016/j.ridd.2013.07.009
   PubMed Web of Science ®Google Scholar
• Baird, P. A., Anderson, T. W., Newcombe, H. B., & Lowry, R. B. (1988). Genetic disorders in children and young adults: a population study. American Journal of Human Genetics, 42(5), 677–693. PMID: 3358420.
   PubMed Web of Science ®Google Scholar
• Bandura, A., Caprara, G. V., Barbaranelli, C., Regalia, C., & Scabini, E. (2011). Impact of family efficacy beliefs on quality of family functioning and satisfaction with family life. Applied Psychology, 60(3), 421–448. https://doi.org/10.1111/j.1464-0597.2010.00442.x
   Web of Science ®Google Scholar
• Barak-Levy, Y., & Atzaba-Poria, N. (2020). A mediation model of parental stress, parenting, and risk factors in families having children with mild intellectual disability. Research in Developmental Disabilities, 98, 103577. https://doi.org/10.1016/j.ridd.2020.10357.
   PubMed Web of Science ®Google Scholar
• Beckers, L., Smeets, R., & van der Burg, J. (2021). Therapy-related stress in parents of children with a physical disability: A specific concept within the construct of parental stress. Disability Rehabilitation, 43(8), 1185–1192. https://doi.org/10.1080/09638288.2019.1646815
   PubMed Web of Science ®Google Scholar
• Bogossian, A., King, G., Lach, L. M., Currie, M., Nicholas, D., McNeill, T., & Saini, M. (2019). (Unpacking) father involvement in the context of childhood neurodisability research: A scoping review. Disability and Rehabilitation, 41(1), 110–124. https://doi.org/10.1080/09638288.2017.1370497.
   PubMed Web of Science ®Google Scholar
• Bowlby, J. (1982). Attachment and loss: retrospect and prospect. The American Journal of Orthopsychiatry, 52(4), 664–678. https://doi.org/10.1111/j.1939-0025.1982.tb01456.x.
   PubMed Web of Science ®Google Scholar
• Byrne, M. B., Hurley, D. A., Daly, L., & Cunningham, C. G. (2010). Health status of caregivers of children with cerebral palsy. Child: Care, Health and Development, 36(5), 696–702. https://doi.org/10.1111/j.1365-2214.2009.01047.x.
   PubMed Web of Science ®Google Scholar
• Cousino, M. K., & Hazen, R. A. (2013). Parenting stress among caregivers of children with chronic illness: a systematic review. Journal of Pediatric Psychology, 38(8), 809–828. https://doi.org/10.1093/jpepsy/jst049.
   PubMed Web of Science ®Google Scholar
• Crnic, K. A., Gaze, C., & Hoffman, C. (2005). Cumulative parenting stress across the preschool period: Relations to maternal parenting and child behaviour at age 5. Infant and Child Development, 14(2), 117–132.
   Web of Science ®Google Scholar
• Crnic, K. A., & Low, C. (2002). Everyday stresses and parenting. In: M.H. Bornstein (Ed.), Handbook of parenting, volume 5: Practical issues in parenting (pp. 243–268). 2nd ed. Lawrence Earlbaum.
   Google Scholar
• De Tanti, A., Zampolini, M., & Pregno, S., CC3 Group. (2015). Recommendations for clinical practice and research in severe brain injury in intensive rehabilitation: The Italian consensus conference. European Journal of Physical and Rehabilitation Medicine, 51(1), 89–103.
   PubMed Web of Science ®Google Scholar
• Dehghan, L., Dalvand, H., Feizi, A., Samadi, S. A., & Hosseini, S. A. (2016). Quality of life in mothers of children with cerebral palsy: The role of children's gross motor function. Journal of Child Health Care, 20(1), 17–26. https://doi.org/10.1177/1367493514540816.
   PubMed Web of Science ®Google Scholar
• Dickinson, C., Whittingham, K., Sheffield, J., Wotherspoon, J., & Boyd, R. N. (2020). Efficacy of interventions to improve psychological adjustment for parents of infants with or at risk of neurodevelopmental disability: A systematic review. Infant Mental Health Journal, 41(5), 697–722. https://doi.org/10.1002/imhj.21871.
   PubMed Web of Science ®Google Scholar
• Eker, L., & Tüzün, E. H. (2004). An evaluation of quality of life of mothers of children with cerebral palsy. Disability and Rehabilitation, 26(23), 1354–1359. https://doi.org/10.1080/09638280400000187.
   PubMed Web of Science ®Google Scholar
• Guarino, A., Di Blasio, P., D'Alessio, M., Camisasca, E., & Serantoni, M. (2008). Indice dello stress genitoriale forma breve: Adattamento italiano. Firenze: Giunti editor, Organizzazioni Speciali
   Google Scholar
• Krauss, M. W. (1993). Child-related and parenting stress: similarities and differences between mothers and fathers of children with disabilities. American Journal of Mental Retardation, 97(4), 393–404.
   PubMedGoogle Scholar
• Labrell, F., Câmara-Costa, H., Dufour, C., Grill, J., Dellatolas, G., & Chevignard, M. (2018). Parental stress and paediatric acquired brain injury. Brain Injury, 32(13–14), 1780–1786. https://doi.org/10.1080/02699052.2018.1524931.
   PubMed Web of Science ®Google Scholar
• McConkey, R., Cassin, M. T., & McNaughton, R. (2020). Promoting the social inclusion of children with ASD: a family-centred intervention. Brain Sciences, 10(5), 318. https://doi.org/10.3390/brainsci10050318.
   Web of Science ®Google Scholar
• Murphy, G., & Athanasou, J. (1999). The effect of unemployment on mental health. Journal of Occupational and Organizational Psychology, 72(1), 83–99. https://doi.org/10.1348/096317999166518
   Web of Science ®Google Scholar
• Palisano, R. J., Rosenbaum, P., Bartlett, D., & Livingston, M. H. (2008). Content validity of the expanded and revised gross motor function classification system. Developmental Medicine and Child Neurology, 50(10), 744–750. https://doi.org/10.1111/j.1469-8749.2008.03089.x.
   PubMed Web of Science ®Google Scholar
• Parkes, J., Caravale, B., Marcelli, M., Franco, F., & Colver, a. (2011). Parenting stress and children with cerebral palsy: A European cross-sectional survey. Developmental Medicine and Child Neurology, 53(9), 815–821. https://doi.org/10.1111/j.1469-8749.2011.04014.x.
   PubMed Web of Science ®Google Scholar
• Paul, K., & Moser, K. (2006). Incongruence as an explanation for the negative mental health effects of unemployment: Meta-analytic evidence. Journal of Occupational and Organizational Psychology, 79(4), 595–621. https://doi.org/10.1348/096317905X70823
   Web of Science ®Google Scholar
• Raina, P., O'Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S. D., Russell, D., Swinton, M., Zhu, B., & Wood, E. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115(6), e626–e636. https://doi.org/10.1542/peds.2004-1689.
   PubMed Web of Science ®Google Scholar
• Rosenbaum, P., King, S., Law, M., King, G., & Evans, J. (1998). Family-centred service. Physical & Occupational Therapy in Pediatrics, 181, 1–20.
   Google Scholar
• Rosenbaum, P., Paneth, N., Leviton, A., Goldstein, M., Bax, M., Damiano, D., Dan, B., & Jacobsson, B. (2007). A report: The definition and classification of cerebral palsy April 2006. Developmental Medicine and Child Neurology. 109, 8–14.
   Google Scholar
• Saviola, D., Chiari, M., Battagliola, E., Savi, C., & De Tanti, A. (2018). Diagnostic work-up and rehabilitation of cerebral visual impairment in infancy: A case of epileptic perinatal encephalopathy due to KCNQ2-related channelopathy. Journal of Pediatric Rehabilitation Medicine, 11(2), 133–137. https://doi.org/10.3233/PRM-170440-2.
   PubMed Web of Science ®Google Scholar
• Saviola, D., De Gaetano, K., Galvani, R., Bosetti, S., Abbati, P., Igharo, V., & De Tanti, A. (2021). Rehabilitation in a rare case of Coffin-Siris. Syndrome with major cognitive and behavioural disorders. Journal of Pediatric Rehabilitation Medicine. Advance online publication. https://doi.org/10.3233/PRM-200785.
   Google Scholar
• Staunton, E., Kehoe, C., & Sharkey, L. (2020). Families under pressure: stress and quality of life in parents of children with an intellectual disability. Irish Journal of Psychological Medicine. Advance online publication. https://doi.org/10.1017/ipm.2020.4
   Google Scholar
• Tuna, H., Ünalan, H., Tuna, F., & Kokino, S. (2004). Quality of life of primary caregivers of children with cerebral palsy: A controlled study with short form-36 questionnaire. Developmental Medicine and Child Neurology, 46(9), 647–648. https://doi.org/10.1017/s0012162204221077.
   PubMed Web of Science ®Google Scholar
• Whiting, M., Nash, A. S., Kendall, S., & Roberts, S. A. (2019). Enhancing resilience and self-efficacy in the parents of children with disabilities and complex health needs. Primary Health Care Research & Development, 20, e33. https://doi.org/10.1017/S1463423619000112.
   PubMed Web of Science ®Google Scholar