Subjective oral health measures in caregivers of patients with autism spectrum disorder and down syndrome: a preliminary study

Authors

DOI:

https://doi.org/10.14393/BJ-v39n0a2023-62137

Keywords:

Disabled Persons, Family Caregivers, Quality of Life, Sense of Coherence, Social Support.

Abstract

This study aimed to address the subjective oral health measures of caregivers of individuals with autism spectrum disorder (ASD) and Down syndrome. This cross-sectional study included 15 caregivers of individuals with ASD (n = 7) and Down syndrome (n = 8). Sociodemographic data, sense of coherence (SOC) (SOC-13 scale), social support (Social Support Scale [MOS-SSS]), oral health-related quality of life (OHRQoL) (OHIP-14), and self-rated oral health assessed on a 5-point Likert scale were collected. A descriptive analysis was performed in addition to correlation analyses (Spearman correlation coefficient). Most primary caregivers were parents of the individual (86.6%). The age of the caregivers ranged between 40 and 59 years (60%). Most caregivers have had 9 to 11 years of education (53.3%). Monthly family income was less than USD 186,28 for ASD caregivers (57.2%) and between USD 327,56 and USD 931,40 for Down syndrome caregivers (50%). Of the caregivers, 33.3% reported good oral health and 33.3% reported neither good nor bad. The average SOC score, social support and OHRQoL was 48.9, 69.3 and 10.9, respectively. The higher the family income, the better the OHRQoL (rs = -0.62, p = 0.014). SOC was correlated with the score of the emotional support domain (rs = 0.54, p = 0.039). It was concluded that caregivers had a strong SOC and high perceived support. Moreover, caregivers did not report a high impact on OHRQoL A better understanding of the caregivers’ protective and coping factors in caring for individuals with disabilities may better promote their quality of life.

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References

ANTONOVSKY, A. Unraveling the mystery of health: how people manage stress and stay well / Aaron Antonovsky. Edtion ed. San Francisco: Jossey-Bass, 1987.

ATCHISON, K.A., DER-MARTIROSIAN, C. and GIFT, H.C. Components of self-reported oral health and general health in racial and ethnic groups. Journal of public health dentistry. 1998, 58(4), 301-308. http://dx.doi.org/10.1111/j.1752-7325.1998.tb03013.x

BALCELLS-BALCELLS, A., et al. Impact of supports and partnership on family quality of life. Research in Developmental Disabilities. 2019, 85, 50-60. http://dx.doi.org/10.1016/j.ridd.2018.10.006

BARROS, A.L.O., et al. Quality of life and burden of caregivers of children and adolescents with disabilities. Special Care in Dentistry. 2019, 39(4), 380-388. http://dx.doi.org/10.1111/scd.12400

BATOOL, S.S. and KHURSHID, S. Factors Associated with Stress Among Parents of Children with Autism. Journal of Colleague Physicians and Surgeries. 2015, 25(10), 752-756. http://dx.doi.org/10.2015/jcpsp.752756

BONANATO, K., et al. Trans-cultural adaptation and psychometric properties of the 'Sense of Coherence Scale' in mothers of preschool children. Interamerican Journal of Psychology. 2009, 43, 144-153.

BONIS, S.A. and SAWIN, K.J. Risks and Protective Factors for Stress Self-Management in Parents of Children With Autism Spectrum Disorder: An Integrated Review of the Literature. Journal of Pediatric Nursing. 2016, 31(6), 567-579. http://dx.doi.org/10.1016/j.pedn.2016.08.006

BRAVEMAN, P. and GOTTLIEB, L. The social determinants of health: it's time to consider the causes of the causes. Public Health Reports. 2014, 129(2), 19-31. http://dx.doi.org/10.1177/00333549141291s206

CAICEDO, C. Families with special needs children: family health, functioning, and care burden. Journal of the American Psychiatric Nurses Association. 2014, 20(6), 398-407. http://dx.doi.org/10.1177/1078390314561326

CANCIO, V., et al. Individuals with special needs and their families' oral health-related quality of life. Brazilian Oral Research. 2018, 32, e39. http://dx.doi.org/10.1590/1807-3107bor-2018.vol32.0039

CHOR, D., et al. Medidas de rede e apoio social no Estudo Pró-Saúde: pré-testes e estudo piloto. Cadernos de Saúde Pública. 2001, 17, 887-896.

COBB, S. Social support as a moderator of life stress. Psychosomatic Medicine. 1976, 38(5), 300-314. http://dx.doi.org/10.1097/00006842-197609000-00003

DEL-PINO-CASADO, R., et al. Sense of coherence, burden and mental health in caregiving: A systematic review and meta-analysis. Journal of Affective Disorders. 2019, 242, 14-21. http://dx.doi.org/10.1016/j.jad.2018.08.002

DONLEY, T., et al. Socioeconomic Status, Family Functioning and Delayed Care Among Children With Special Needs. Social Work in Public Health. 2018, 33(6), 366-381. http://dx.doi.org/10.1080/19371918.2018.1504703

DSM-5 American Psychiatric Association. DSM-5 Edtion ed. Arlington, VA, US: American Psychiatric Publishing, Inc., 2013. 947 p.

ERIKSSON, M. and LINDSTRÖM, B. Antonovsky's sense of coherence scale and the relation with health: a systematic review. Journal of Epidemiology and Community Health. 2006, 60(5), 376-381. http://dx.doi.org/10.1136/jech.2005.041616

FARIA CARRADA, C., et al. Caregivers' Perception of Oral Health-Related Quality of Life of Individuals with Down Syndrome. Journal of dentistry for children. 2020, 87(3), 132-140.

GOMES, M.C., et al. Influence of sense of coherence on oral health-related quality of life: a systematic review. Quality of Life Research. 2018, 27(8), 1973-1983. http://dx.doi.org/10.1007/s11136-018-1832-5

GOMES, A.C., et al. Socioeconomic status, social support, oral health beliefs, psychosocial factors, health behaviours and health-related quality of life in adolescents. Quality of Life Research. 2020, 29(1), 141-151. http://dx.doi.org/10.1007/s11136-019-02279-6

GRIEP, R.H., et al. Test-retest reliability of measures of social network in the "Pró -Saúde" Study. Revista de saude publica. 2003, 37(3), 379-385. http://dx.doi.org/10.1590/s0034-89102003000300018

GUYATT, G.H. and COOK, D.J. Health status, quality of life, and the individual. Journal of the American Medical Association. 1994, 272(8), 630-631.

IBGE. CENSO DEMOGRÁFICO 2010: características da população e dos domicílios: resultados do universo. In. Rio de Janeiro: Sidra: sistema IBGE de recuperação automática. 2011.

KAZEMI, M., SALEHI, M. and KHEIROLLAHI, M. Down Syndrome: Current Status, Challenges and Future Perspectives. International Journal of Molecular and Cellular Medicine. 2016, 5(3), 125-133.

MANTRI-LANGEVELDT, A., DADA, S. and BOSHOFF, K. Measures for social support in raising a child with a disability: A scoping review. Child: Care, Health and Development. 2019, 45(2), 159-174. http://dx.doi.org/10.1111/cch.12646

NICE. National Institute for Health and Care Excellence: Clinical Guidelines. In Antisocial behaviour and conduct disorders in children and young people: recognition and management. London: National Institute for Health and Care Excellence (UK) Copyright © NICE 2020. 2017.

NORDAHL-HANSEN, A., HART, L. and ØIEN, R.A. The Scientific Study of Parents and Caregivers of Children with ASD: A Flourishing Field but Still Work to be Done. Journal of Autism and Developmental Disorders. 2018, 48(4), 976-979. http://dx.doi.org/10.1007/s10803-018-3526-9

OELOFSEN, N. and RICHARDSON, P. Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability. Journal of Intellectual & Developmental Disability. 2006, 31(1), 1-12. http://dx.doi.org/10.1080/13668250500349367

OLIVEIRA, B.H. and NADANOVSKY, P. Psychometric properties of the Brazilian version of the Oral Health Impact Profile-short form. Community Dentistry and Oral Epidemiology. 2005, 33(4), 307-314. http://dx.doi.org/10.1111/j.1600-0528.2005.00225.x

OLIVEIRA EDE, F. and LIMONGI, S.C. Quality of life of parents/caregivers of children and adolescents with Down syndrome. Jornal da Sociedade Brasileira de Fonoaudiologia. 2011, 23(4), 321-327. http://dx.doi.org/10.1590/s2179-64912011000400006

ONG, H.L., et al. Resilience and burden in caregivers of older adults: moderating and mediating effects of perceived social support. BMC Psychiatry. 2018, 18(1), 27. http://dx.doi.org/10.1186/s12888-018-1616-z

RECIO, P., et al. Perceived discrimination and self-esteem among family caregivers of children with autism spectrum disorders (ASD) and children with intellectual disabilities (ID) in Spain: The mediational role of affiliate stigma and social support. Research in Developmental Disabilities. 2020, 105, 103737. http://dx.doi.org/10.1016/j.ridd.2020.103737

SHERBOURNE, C.D. and STEWART, A.L. The MOS social support survey. Social science & medicine. 1991, 32(6), 705-714. http://dx.doi.org/10.1016/0277-9536(91)90150-b

SISCHO, L. and BRODER, H.L. Oral health-related quality of life: what, why, how, and future implications. Journal of Dental Research. 2011, 90(11), 1264-1270. http://dx.doi.org/10.1177/0022034511399918

STAUNTON, E., KEHOE, C. and SHARKEY, L. Families under pressure: stress and quality of life in parents of children with an intellectual disability. Irish Journal of Psychological Medicine. 2020, 28, 1-8. http://dx.doi.org/10.1017/ipm.2020.4

STRINGHINI, S., et al. Association of socioeconomic position with health behaviors and mortality. Journal of the American Medical Association. 2010, 303(12), 1159-1166. http://dx.doi.org/10.1001/jama.2010.297

UN 2006. Convention on the Rights of Persons with Disabilities (CRPD). In Proceedings of the United Nations, USA2006 ONU.

WALL, R., et al. Oral Health-Related Quality of Life of Children: An Assessment of the Relationship between Child and Caregiver Reporting. Journal of Dental Hygiene. 2020, 94(2), 18-26.

WANG, Y.C., et al. Dental anesthesia for patients with special needs. Acta Anaesthesiologica Taiwanica. 2012, 50(3), 122-125. http://dx.doi.org/10.1016/j.aat.2012.08.009

WHO. Commission on Social Determinants of Health final report: closing the gap in a generation: health equity through action on the social determinants of health. In. Geneva: World Health Organization, 2008.

WHO. World report on disability 2011. In. Geneva: World Health Organization, 2011.

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Published

2023-01-20

How to Cite

VIANNA PEREIRA, J., BUENO, T.C., HERKRATH, F.J., SILVA, M.M..D. da, LEME, M.C., SANTOS-SILVA, A.R. dos and LOPES, M.A., 2023. Subjective oral health measures in caregivers of patients with autism spectrum disorder and down syndrome: a preliminary study. Bioscience Journal [online], vol. 39, pp. e39008. [Accessed22 November 2024]. DOI 10.14393/BJ-v39n0a2023-62137. Available from: https://seer.ufu.br/index.php/biosciencejournal/article/view/62137.

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Health Sciences