Abstract
In a global perspective, the proportion of children with disabilities and long-term illnesses is constantly increasing. A contributing factor to this increase may be that the advances in medical technology and medical solutions make it possible for more children to be born to this world alive. Many of these children are at risk of being “medically fragile” and in need of advanced medical care for short or long periods. Because health-care interventions are becoming more and more advanced, this also increases the risk of medical errors and complications, which may further impair an already bad state of health of a child. The extensive healthcare needs of children with disabilities often lead to increased financial costs for the family, while paid work outside the home is prevented or significantly hampered. This mostly affects mothers, who usually are the primary caregivers for a disabled child in the family. These mothers often suffer from depression or depressive symptoms, which may affect children’s mental health and perceived quality of life negatively.
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References
Allison KM, Levac DE (2022) Impact of the COVID- 19 pandemic on therapy service delivery and functioning for school-aged children with disabilities in the United States. Disabil Health J 15. https://pubmed.ncbi.nlm.nih.gov/35115260/
Altun C, Guven G, Akgun OM, Akkurt MD, Basak F, Akbulul E (2010) Oral health status of disabled individuals attending special schools. Eur J Dent 4:361–366
Amatori S, Sisti D, Perroni F, Brandi G, Rocchi MBL, Gobbi E (2022) Physical activity, sedentary behaviour and screen time among youths with down syndrome during the COVID – 19 pandemic. J Intellect Disabil Res. https://www.scopus.com/inward/record.uri?eid=2-s2.0-85128570080&doi=10.1111%2fjir.12933&partnerID=40&md5=9e643b5e550181fab38d419bbd5a7896 66:903
Arbour-Nicitopoulos KP, James ME, Moore SA, Sharma R, Ginis KAM (2022) Movement behaviors and health of children and youth with disabilities. Impact of the 2020 COVID-19 pandemic. Paediatr Int Child Health 27:66–71
Arnrup K, Lundin SA, Dahllöf G (1993) Analysis of peadiatric dental services provided at a regional hospital in Sweden. Dental treatment needs in medically compromised children referred for dental consultation. Swed Dent J 17:255–259
Asbury K, Toseeb U (2022) A longitudinal study of the mental health of autistic children and adolescents and their parents during COVID-19: part 2, qualitative findings. Autism 27:188. https://doi.org/10.1177/13623613221086997
Bonito AJ (2002) Executive summary: dental care considerations for vulnerable populations. Spec Care Dentist 22:5–10
Burns KH, Casey PH, Lyle RE, Bird TM, Fussell JJ, Robbins JM (2010) Increasing prevalence of medically complex children in U.S. hospitals. Pediatrics 126:628–646
Campbell AG, McHaffie HE (1995) Prolonging life and allowing death: infants. J Med Ethics 21:339–344
Carrington L, Hale L, Freeman C, Qureshi A, Perry M (2021) Family-centered care for children with biopsychosocial support needs: a scoping review. Disabilities 1:301–330
Carter A, Clarke L, Stevens C (2022) Dental health for children with special educational needs and disability. Paediatr Int Child Health 32:290–296
Case SP (2000) Refocusing on the parent: what are the social issues of concern for parents of disabled children? Disabil Soc 16:837–854
Cassamassimo PS, Seale S, Ruehs K (2004) General dentists’ perceptions of educational and treatment issues affecting access to care for children with special health care needs. J Dent Educ 68:23–28
Chan RCH, Fung SC (2022) Elevated levels of COVID-19-related stress and mental health problems among parents of children with developmental disorders during the pandemic. J Autism Dev Disord 52:1314–1325
Cooley WC, McAllister JW (2004) Building medical homes. Pediatrics 113:1499–1506
Davidsson EJ, Silva TJ, Sofis LA, Ganz ML, Palfrey JS (2002) The doctor’s dilemma: challenges for the primary care physician caring for the child with special health care needs. Ambul Pediatr 2:218–223
Dempsey I, Keen D (2008) A review of processes and outcomes in family-centered services for children with a disability. TECSE 28:42–52
Dobosz D, Giercyk M, Hornby G (2022) Parental perspectives of home-schooling of children with special educational needs and disabilities during the COVID-19 pandemic: a review. JORSEN, https://www.scopus.com/inward/record.uri?eid=2-s2.0-85139220641&doi=10.1111%2f1471-3802.12575&partnerID=40&md5=8ca431dbe15b3526b889621c4f65797d
Douma JCH, Dekker MC, Koot HM (2006) Supporting parents of youths with intellectual disabilities and psychopathology. J Intellect Disabil Res 50:570–581
Edmond A, Eaton N (2004) Supporting children with complex health care needs and their families – an overview of the research agenda. Child Care Health Dev 30:195–199
Feldman DE, Champagne F, Korner-Bitensky N, Meshefedejian G (2002) Waiting time for rehabilitation services for children with physical disabilities. Child Care Health Dev 28:351–358
Fledderjohann J, Erlam J, Knowles B, Broadhurst K (2021) Mental health and care needs in British children and young people aged 6–17. Child Youth Serv Rev 126., https://www.sciencedirect.com/science/article/pii/S0190740921001122:106033
Gallegos J, Langley A, Villegas D (2012) Anxiety, depression, and coping skills among Mexican school children: a comparison of student with and without learning disabilities. LDQ 35:54–61
Gaskin DJ, Mitchell JM (2005) Health status and access to care for children with special health care needs. J Ment Health Policy Econ 8:29–35
Gilmore L, Campbell M, Shochet I (2022) Adapting self-report measures of mental health for children with intellectual disability. J Ment Health Res Intellect Disabil 15:1–19
Glascoe FP (2000) Evidence-based approach to developmental and behavioral surveillance using parents’ concerns. Child Care Health Dev 26:137–149
Grangeiro PM, deFreitas LM, de Lucena Gomes FG, Alvarez DS, Moreira CA, de Souza NA, Balbino JM, Leonelli C, Macea RM, da Silva CAA (2022) Telehealth for children and adolescents with physical disabilities during the COVID-19 pandemic. Acta Ortop Bras 30. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9270038/
Hallberg U, Haag P (2007) The subjective meaning of dentition and oral health: struggling for optimizing self-esteem. Int J Qual Stud 2:86–92
Hallberg U, Klingberg G (2005) Medical health care professionals’ assessment of oral health need in children with disabilities: a qualitative study. EJOS 113:363–368
Hochman Y, Shpigelman CN, Holler R, Werner S (2022) “Together in a pressure cooker”: parenting children with disabilities during the COVID-19 lockdown. Disabil Health J 15. https://www.scopus.com/inward/record.uri?eid=2-s2.0-85124600961&doi=10.1016%2fj.dhjo.2022.101273&partnerID=40&md5=ad25cb4650371d77a31251485bca749e
Honkala E (1993) Promotion with children and adolescents. In: Shou L, Blinkhorn AS (eds) Oral health promotion. Oxford University Press, Oxford, pp 168–187
Horwitz SM, Kerker BD, Owens PL, Zigler E (2000) Dental health among individuals with mental retardation. The health status and needs of individuals with mental retardation. Department of Epidemiology and Public Health, Yale University School of Medicine, pp 119–128
Howell R, Brimble M (2013) Dental health management for children with special healthcare needs. Nurs Child Young People 25:19–22. https://www.scopus.com/inward/record.uri?eid=2-s2.0-85134041582&doi=10.1590%2f1413-785220223001e248102&partnerID=40&md5=9944a5b7f2243368225dd9ffc98f82b8
Hwang W, Weller W, Ireys H, Andersson G (2001) Out-of-pocket medical spending for care of chronic conditions. Health Aff 20:267–278
Kar A, Chutke A, Gokhale C, Phadnis S, Radhakrishnan B (2022) A healthy future for children and adolescents. Lancet 400:1099. https://doi.org/10.1016/S0140-6736(22)01599-9
Kaye PL, Fiske J, Bower EJ, Newton JT, Fenlon M (2005) Views and experiences of parents and siblings of adults with down syndrome regarding oral healthcare: a qualitative and quantitative study. Brit Dent J 198:571–578
Kearney PM, Griffin T (2001) Between joy and sorrow: being a parent off a child with developmental disability. Online J Issues Nurs 34:582–592
King G, King S, Rosenbaum P (1996) Interpersonal aspects of care-giving and client outcomes: a review of the literature. Ambul Child Health 2:151–160
King S, Teplicky R, King G, Rosenbaum P (2004) Family-centered service for children with cerebral palsy and their families: a review of the literature. Semin Pediatr Neurol 11:78–86
Kinirons MJ (1983) Increased salivary buffering in association with a low caries experience in children suffering from cystic fibrosis. J Dent Res 62:815–817
Klingberg G, Hallberg U (2012) Oral health – not a priority issue. A grounded theory analysis of barriers for young patients with disabilities to receive oral health care on the same premise as others. EJOS 120:232–238
Kuhlthau K, Hill KS, Yucel R, Perrin JM (2005) Financial burden for families of children with special health care needs. JMCH 9:207–218
Levin-Decanini T, Henderson C, Mistry S, Dwarakanath N, Ray K, Miller E, Houtrow A (2022) Decreased access to therapeutic services for children with disabilities during COVID-19 stay-at-home orders in Western Pennsylvania. JPRM 15:517–521
Lewis CW (2009) Dental care and children with special health care needs: a population-based perspective. Acad Pediatr 9:420–426
Lewis CW, Robertson AS, Phelps S (2005) Unmet dental care needs among children with special health care needs implications for the medical home. Paediatrics 116:426–431
Liabo K, Newman T, Stephens J, Lowe K (2001) A review of key worker systems for disabled children and the development of information guides for parents, children and professionals. Office of R& D for Health and Social Care, Cardiff, Wales
Luscre DM, Center DB (1996) Procedures for reducing dental fear in children with autism. J Autism Dev Disord 26:547–556
Maes B, Broekman TG, Dosen A, Nauts J (2003) Caregiving burden of families looking after persons with intellectual disability and behavioral or psychiatric problems. J Intellect Disabil Res 47:447–455
Majnemer A (1998) Benefits of early intervention for children with developmental disabilities. Semin Pediatr Neurol 5:62–69
Mandic J, Jovanovic S, Mandinic Z, Ivanovic M (2016) Oral health in children with special needs. Milit Med Pharmaceut Rev 75:372–372
Martinsone B, Tzivian L (2021) Differences in stress and coping during the COVID-19 pandemic in families with and without children with developmental disorders or chronic conditions. Public Health Front 9. https://www.scopus.com/inward/record.uri?eid=2-s2.0-85114338820&doi=10.3389%2ffpubh.2021.704577&partnerID=40&md5=c875179d5177dbaa070b7e7dbc370c9f
Mas JM, Dunst CJ, Balcells-Balcells A, Garcia-Ventura S, Gine C, Canadas M (2019) Family-centered practices and the parental Well-being of young children with disabilities and developmental delay. Res Dev Disabil 94:103495. https://doi.org/10.1016/j.ridd.2019.103495
Matlow AG, Wright JG, Zimmerman B, Thomson K, Valente M (2006) How can the principles of complexity science be applied to improve the coordination of care for complex pediatric patients? Qual Saf Health Care 15:85–88
McConkey R (2005) Fair shares? Supporting families caring for adult persons with intellectual disabilities. J Intellect Disabil Res 49:183–190
Matziou V, Tsoumakas C, Perdikaris P (2009) Attitudes of nurse professionals and nursing students towards children with disabilities. Do nurses really overcome children’s physical and mental handicaps? Int Nurs Rev 56:456–460
McCarthy E, Guerin S (2021) Family-centered care in early intervention: a systematic review of the processes and outcomes of family-centered care and impacting factors. Child Care Health Dev 48:1. https://doi.org/10.1111/cch.12901
McKean GL, Thurston WE, Scott C (2004) Bridging the divide between families and health professionals’ perspectives on family-centered care. Health Expect 8:74–85
Millner J, Bungay C, Jellinek D, Hall MB (1996) Needs of disabled children and their families. ADC 75:399–404
Mitsea AG, Karidis AG, Donta-Bakoyianni C, Spyropoulus ND (2001) Oral health status in Greek children and teenagers with disabilities. Int J Clin Pediatr Dent 26:111–118
Mohr LL, D’Antoni AC, Moreno-Milne N, McIntosh DK, Miano K, Raymond G (1980) Life coping skills for exceptional children. Paper presented at the 58th annual international convention of the council for exceptional children
Ningrum V, Bakar A, Shieh TM, Shih YH (2021) The oral health inequities between special needs children and normal children in Asia: a systematic review and meta-analysis. Healthcare 9. https://doi.org/10.3390/healthcare9040410
O’Connor AM, Bennett CL, Stacey D (2009) Decision aids for people facing health treatment orscreening decisions. CDSR 3. https://pubmed.ncbi.nlm.nih.gov/19588325
Park J, Hoffman L, Marquis J, Turnbull AP, Poston DJ, Mannan H et al (2003) Towards assessing family outcomes of service delivery: validation of a family quality of life survey. J Intellect Disabil Res 47:367–384
Rao D, Amitha H, Munshi AK (2005) Oral hygiene status in disabled children and adolescents attending special schools of South Canara, India. Hong Kong Dent J 2:107–113
Rosenbaum PL, King S, Law M, King G, Evans J (1998) Family-centered service: a conceptual framework and research review. Phys Occup Ther Pediatr 18:1–20
Sarvey SI (2008) Living with a machine: the experience of the child who is ventilator dependent. Issues Ment Health Nurs 29:179–196
Shahat ARS, Greco G (2021) The economic cost of childhood disability: a literature review. Int J Environ Health Res 18. https://doi.org/10.3390/ijerph18073531. PMID: 33805375; PMCID: PMC8036354
Sloper P (1999) Models of service support for parents of disabled children: what do we know? What do we want to know? Child Care Health Dev 25:85–99
Smith RG, Lewis CW (2005) Availability of dental appointments for young children in king county, Washington: implications for access to care. Pediatr Dent 27:207–211
Spratling R (2012) The experiences of medically fragile adolescents who require respiratory assistance. J Adv Nurs 68:2740–2749
Teagle SE (2002) Parental problem recognition and child mental health service use. Ment Health Serv Res 4:257–266
Totsika V, Liew A, Absoud M, Adnams C, Emerson E (2022) Mental health problems in children with intellectual disability. Lancet Child Adolesc Health 6:432–444
Trulsson U, Klingberg G (2003) Living with a child with a severe orofacial handicap: experiences from the perspective of parents. EJOS 111:19–25
Vanderkerken L, Heyvaert M, Maes B (2019) Family-centered practices in home-based support for families with children with an intellectual disability: judgements of parents and professionals. J Intellect Disabil 25:331. https://doi.org/10.1177/1744629519897747
Witt WP, Riley AR, Coiro MJ (2003) Childhood functional status, family stressors and psychosocial adjustment among school-aged children with disabilities in the U.S. Arch Pediatr Adolesc Med 157:687–695
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Hallberg, U., Klingberg, G. (2023). The Health and Well-being of Children with Disabilities. In: Children with Special Needs . SpringerBriefs in Social Work. Springer, Cham. https://doi.org/10.1007/978-3-031-28513-4_2
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