Systematic Review of the Relationship Between Autism Stigma and Informal Caregiver Mental Health.
Autism
Caregiver
Carer
Mental health
Stigma
Theoretical framework
Journal
Journal of autism and developmental disorders
ISSN: 1573-3432
Titre abrégé: J Autism Dev Disord
Pays: United States
ID NLM: 7904301
Informations de publication
Date de publication:
Apr 2019
Apr 2019
Historique:
pubmed:
21
12
2018
medline:
24
5
2019
entrez:
21
12
2018
Statut:
ppublish
Résumé
Families play a crucial role in determining the mental health of the autistic individual(s) they are caring for. However, the stigma associated with autism can impair caregiver health. To investigate this, empirical evidence pertaining to stigma's impact on informal caregivers' mental health was systematically reviewed. All twelve included studies (n = 1442 informal caregivers) consistently reported the impact of autism related stigma upon caregiver mental health to be significant, meaningful and complex. A new theoretical framework describing the relationship between stigma and caregiver mental health is constructed. Moderating variables include those both changeable through intervention (e.g. hopelessness, self-esteem, self-compassion) and not changeable (gender, culture, financial burden and time since diagnosis). Implications and recommendations for professionals, interventions and future research are proposed.
Identifiants
pubmed: 30569408
doi: 10.1007/s10803-018-3835-z
pii: 10.1007/s10803-018-3835-z
pmc: PMC6450836
doi:
Types de publication
Journal Article
Systematic Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
1665-1685Subventions
Organisme : Autistica
ID : 7241
Références
Ali, A., Hassiotis, A., & King, M. B. (2012). Self-stigma in people with intellectual disabilities and courtesy stigma in family carers: A systematic review. Research in Developmental Disabilities, 33(6), 2122–2140.
doi: 10.1016/j.ridd.2012.06.013
pubmed: 22784823
Alqahtani, M. M. (2012). Understanding autism in Saudi Arabia: A qualitative analysis of the community and cultural context. Journal of Pediatric Neurology, 10(1), 15–22.
Bankole, O. (2016). Involving African families in the education of their autistic children. Network Autism. Available at: https://network.autism.org.uk/knowledge/insight-opinion/involving-african-families-education-their-autistic-children .
Bauminger, N., & Kasari, C. (2000). Loneliness and friendship in high-functioning children with autism. Child Development, 71(2), 447–456.
doi: 10.1111/1467-8624.00156
pubmed: 10834476
Bauminger, N., Shulman, C., & Agam, G. (2003). Peer interaction and loneliness in high-functioning children with autism. Journal of Autism and Developmental Disorders, 33(5), 489–507.
doi: 10.1023/A:1025827427901
pubmed: 14594329
Broady, R. T., Stoyles, G. J., & Morse, C. (2018). Understanding carers’ lived experience of stigma: The voice of families with a child on the autism spectrum. Health and Social Care in the Community, 25(1), 224–233.
doi: 10.1111/hsc.12297
Chan, K. K. S., & Lam, C. B. (2017). Trait mindfulness attenuates the adverse psychological impact of stigma on parents of children with autism spectrum disorder. Mindfulness, 8: 984–994. https://doi.org/10.1007/s12671-016-0675-9 .
doi: 10.1007/s12671-016-0675-9
Chan, K. K. S., & Lam, C. B. (2018). Self-stigma among parents of children with autism spectrum. disorder. Research in Autism Spectrum Disorders. 48, 44–52
doi: 10.1016/j.rasd.2018.01.001
Chan, K. K. S., & Mak, W. W. S. (2017). The content and process of self-stigma in people with mental illness. American Journal of Orthopsychiatry, 87, 34–43.
doi: 10.1037/ort0000127
pubmed: 26691144
Chiu, M. Y. L., Yang, X., Wong, F. H. T., et al. (2013). Caregiving of children with intellectual disabilities in China—an examination of affiliate stigma and the cultural thesis. Journal of Intellectual Disability Research, 57 (12), 1117–1129.
Corrigan, P. W., Larson, J. E., & Rusch, N. (2009). Self-stigma and the “why try” effect: Impact on life goals and evidence-based practices. World Psychiatry, 8(2), 75–81.
doi: 10.1002/j.2051-5545.2009.tb00218.x
pubmed: 2694098
pmcid: 2694098
Corrigan, P. W., & Watson, A. C. (2002). The paradox of self-stigma and mental illness. Clinical Psychology: Science and Practice, 9, 35–53.
Corrigan, P. W., Watson, A. C., & Miller, F. E. (2006). Blame, shame and contamination: The impact of mental illness and drug dependence stigma of family members. Journal of Family Psychology, 20, 239–246.
doi: 10.1037/0893-3200.20.2.239
pubmed: 16756399
Crabtree, S. A. (2007). Family responses to the social inclusion of children with developmental disabilities in the United Arab Emirates. Disability & Society, 22(1), 49–62.
doi: 10.1080/09687590601056618
Da Paz, N. S., & Wallander, J. L. (2017). Interventions that target improvements in mental health for parents of children with autism spectrum disorders: A narrative review. Clinical Psychology Review, 51, 1–14.
doi: 10.1016/j.cpr.2016.10.006
pubmed: 27816800
Dababnah, S., & Parish, S. L. (2013). At a moment, you could collapse”: Raising children with autism in the West Bank. Children and Youth Services Review, 35, 1670–1678.
doi: 10.1016/j.childyouth.2013.07.007
Dehvani, S. R., Malekpour, M., Faramarzi, S., & Talebi, H. (2011). The share of internalized stigma and autism quotient in predicting the mental health of mothers with autism children in Iran. International Journal of Business and Social Science, 2(20), 251–259.
Dykens, E. M., Fisher, M. H., Taylor, J. L., et al. (2014). Reducing distress in mothers of children with autism and other disabilities: A randomized trial. Pediatrics, 134(2), e454–e463.
doi: 10.1542/peds.2013-3164
pubmed: 25049350
pmcid: 4187227
Gatzoyia, D., Kotsis, K., Koullourou, I., et al. (2014). The association of illness perceptions with depressive symptoms and general psychological distress in parents of an offspring with autism spectrum disorder. Disability and Health Journal, 7(2), 173–180.
doi: 10.1016/j.dhjo.2013.10.008
pubmed: 24680046
Georgetown University (2017). See amazing in all children. Evaluation report. Executive summary. Available at: http://autism.sesamestreet.org/wp-content/uploads/2017/03/See-Amazing-Executive-Summary.pdf .
Gilliam, J. E. (2001). Gilliam autism rating scale. Austin: Pro-ED Inc.
Gray, D. E. (1993). Perceptions of stigma: The parents of autistic children. Sociology of Health and Illness, 15(1), 102–120.
doi: 10.1111/1467-9566.ep11343802
Gray, D. E. (2002). Ten years on: A longitudinal study of families of children with autism. Journal of Intellectual & Developmental Disability, 27(3), 215–222.
doi: 10.1080/1366825021000008639
Green, S. E. (2001). ‘Oh, those therapists will become your best friends’: Maternal satisfaction with clinics providing physical, occupational and speech therapy services to children with disabilities. Sociology of Health and Illness, 23, 798–828.
doi: 10.1111/1467-9566.00276
Grinker, R. R, Yeargin-Allsopp, M. & Boyle, C. (2011). Culture and autism spectrum disorders: The impact on prevalence and recognition. In D. Amaral, D. Geschwind, and G. Dawson (Eds.), Autism Spectrum Disorders (pp. 112–126). Oxford: Oxford University Press.
doi: 10.1093/med/9780195371826.003.0008
Isa, S. N., Aziz, A. A., Rahman, A. A., et al. (2013). The impact of disabled children on parent health-related quality of life and family functioning in Kelantan and its associated factors. Journal of Developmental and Behavioral Pediatrics, 34, 262–268.
doi: 10.1097/DBP.0b013e318287cdfe
pubmed: 23538932
Jahoda, A., & Markova, I. (2004). Coping with social stigma: People with intellectual disability moving from institutions and family home. Journal of Intellectual Disability Research, 48, 719–729.
doi: 10.1111/j.1365-2788.2003.00561.x
pubmed: 15494061
Kinnear, S. H., Link, B. G., Ballan, M. S., & Fischbach, R. L. (2015). Understanding the experience of stigma for parents of children with autism spectrum disorder and the role stigma plays in families’ Lives. Journal of Autism and Developmental Disorders, 46(3), 942–953.
doi: 10.1007/s10803-015-2637-9
Kroenke, K., Spitzer, R., & Williams, J. (2001). The PHQ-9: Validity of a brief depression severity measure. Journal of General Internal Medicine, 16, 606–613.
doi: 10.1046/j.1525-1497.2001.016009606.x
pubmed: 1495268
pmcid: 1495268
Lucas, P. J., Arai, L., Baird, L. C., et al. (2007). Worked examples of alternative methods for the synthesis of qualitative and quantitative research in systematic reviews. BMC Medical Research Methodology, 7, 4.
doi: 10.1186/1471-2288-7-4
pubmed: 17224044
pmcid: 1783856
Mak, W. W., & Cheung, R. Y. M. (2008). Affiliate stigma among caregivers of people with intellectual disability or mental illness. Journal of Applied Research in Intellectual Disabilities, 21, 532–445.
doi: 10.1111/j.1468-3148.2008.00426.x
Mak, W. W., & Kwok, Y. T. (2010). Internalization of stigma for parents of children with autism spectrum disorder in Hong Kong. Social Science and Medicine, 70, 2045–2051.
doi: 10.1016/j.socscimed.2010.02.023
pubmed: 20362379
McNamee, R. (2005). Regression modelling and other methods to control confounding. Occupational & Environmental Medicine, 62(7), 500–506.
doi: 10.1136/oem.2002.001115
Meyers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009). My greatest joys and my greatest heartache: Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3, 670–684.
doi: 10.1016/j.rasd.2009.01.004
Milacic Vidojevic, I., Gligorovic, M., & Dragojevic, N. (2012). Tendency towards stigmatization of families of a person with autistic spectrum disorders. International Journal of Social Psychiatry, 60(1), 63–70.
doi: 10.1177/0020764012463298
pubmed: 23117824
Mugno, D., Ruta, L., D’Arrigo, V. G., & Mazzone, L. (2007). Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health and Quality of Life Outcomes, 5, 22–31.
doi: 10.1186/1477-7525-5-22
pubmed: 17466072
pmcid: 1868708
Ngo, H., Shin, J. Y., Nhan, N. V., & Yang, L. H. (2012). Stigma and restriction on the social life of families of children with intellectual disabilities in Vietnam. Singapore Medical Journal, 53(7), 451–457.
pubmed: 22815013
Obeid, R., Daou, N., DeNigris, D., et al. (2015). A cross-cultural comparison of knowledge and stigma associated with autism spectrum disorder among college students in Lebanon and the United States. Journal of Autism and Developmental Disorders, 45(11), 3520–3536.
doi: 10.1007/s10803-015-2499-1
pubmed: 26084712
Osborne, L. A., McHugh, L., Saunders, J., & Reed, P. (2008). Parenting stress reduces the effectiveness of early teaching interventions for autistic spectrum disorders. Journal of Autism and Developmental Disorders. 38(6), 1092–1103.
doi: 10.1007/s10803-007-0497-7
pubmed: 18027079
Papadopoulos, I. (2006). Transcultural Health and Social Care: Development of Culturally Competent Practitioners. Elsevier: Edinburgh.
Papadopoulos, C. (2016a). Self-stigma among carers of autistic people. Network Autism. Available at: http://network.autism.org.uk/good-practice/evidence-base/self-stigma-among-carers-autistic-people .
Papadopoulos, C. (2016b). Autism stigma and the role of ethnicity and culture. Network Autism. Available at: http://network.autism.org.uk/knowledge/insight-opinion/autism-stigma-and-role-ethnicity-and-culture .
Papadopoulos, C., Foster, J., & Caldwell, K. (2013). ‘Individualism-Collectivism’ as an explanatory device for mental illness stigma. Community Mental Health Journal, 49, 270–280.
doi: 10.1007/s10597-012-9534-x
pubmed: 22837106
Pellicano, E., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon? Community views and priorities from the United Kingdom. Autism, 18(7), 756–770.
doi: 10.1177/1362361314529627
pubmed: 24789871
pmcid: 4230972
Radloff, L. S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1(3), 385–401.
doi: 10.1177/014662167700100306
Resch, J. A., Mireles, G., Benz, M. R., et al. (2010). Giving parents a voice: A qualitative study of the challenges experienced by parents of children with disabilities. Rehabilitation Psychology, 55(2), 139–150.
doi: 10.1037/a0019473
pubmed: 20496968
Samuel, P. S., Rillotta, F., & Brown, I. (2012). The development of family quality of life concepts and measures. Journal of Intellectual Disability Research, 56, 1–16.
doi: 10.1111/j.1365-2788.2011.01486.x
pubmed: 22151130
Sander, J. L., & Morgan, S. B. (1997). Family stress and adjustment as perceived by parents of children with autism or Down syndrome: Implications for intervention. Child and Family Behavior Therapy, 19, 15–32.
doi: 10.1300/J019v19n04_02
Sesame Workshop (No date). See amazing in all children. Available at: http://www.sesameworkshop.org/what-we-do/our-initiatives/autism/ .
Spitzer, R. L., Kroenke, K., Williams, J. B., & Löwe, B. (2006). A brief measure for assessing generalized anxiety disorder: The GAD-7. Archives of Internal Medicine, 166, 1092–1097.
doi: 10.1001/archinte.166.10.1092
Struening, E. L., Perlick, D. A., Link, B. G., et al. (2001). Stigma as a barrier to recovery: The extent to which caregivers believe most people devalue consumers and their families. Psychiatric Services, 52, 1633–1638.
Ting, Z., Yiting, W., & Chunli, Y. (2018). Affiliate stigma and depression in caregivers of children with Autism Spectrum Disorders in China: Effects of self-esteem, shame and family functioning. Psychiatry Research, 264, 260–265.
doi: 10.1016/j.psychres.2018.03.071
Veit, C. T., & Ware, J. E., Jr. (1983). The structure of psychological distress and well-being in general populations. Journal of Consulting and Clinical Psychology, 51, 730–742.
Werner, S., & Shulman, C. (2013). Subjective well-being among family caregivers of individuals with developmental disabilities: The role of affiliate stigma and psychosocial moderating variables. Research in Developmental Disabilities, 34(11), 4103–4114.
doi: 10.1016/j.ridd.2013.08.029
pubmed: 24055712
Wong, C. C. Y., Mak, W. W. S., & Liao, K. Y.-H. (2016). Self-compassion: A potential buffer against affiliate stigma experienced by parents of children with autism spectrum disorders. Mindfulness, 7, 1385–1395.
doi: 10.1007/s12671-016-0580-2
Yu, Y. W., Chung, K. H., Lee, Y. K., et al. (2016). Prevalence of maternal affective disorders in Chinese mothers of preschool children with autism spectrum disorders. East Asian Archives of Psychiatry, 26(4), 121–128.
pubmed: 28053279
Zablotsky, B., Bradshaw, C. P., & Stuart, E. A. (2013). The association between mental health, stress, and coping supports in mothers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(6), 1380–1393.
doi: 10.1007/s10803-012-1693-7
pubmed: 23100053
Zheng, Q. L., Tian, Q., Hao, C., et al. (2014). The role of quality of care and attitude towards disability in the relationship between severity of disability and quality of life: Findings from a cross-sectional survey among people with physical disability in China. Health and Quality of Life Outcomes, 12, 25.
doi: 10.1186/1477-7525-12-25
pubmed: 24559096
pmcid: 3941947
Zuckerman, K. E., Lindly, O. J., Reyes, N. M., et al. (2018). Parent perceptions of community autism spectrum disorder stigma: Measure validation and associations in a multi-site sample. Journal of Autism and Developmental Disorders, 48(9), 3199–3209.
doi: 10.1007/s10803-018-3586-x
pubmed: 29700707