Top

Gepubliceerd in:

15-09-2023 | Original Paper

Fathers of Adult Children with Autism: Examination of Caregiver Burden, Social Support, and Quality of Life

Auteur: Christina N. Marsack-Topolewski

Gepubliceerd in: Journal of Child and Family Studies | Uitgave 11/2023

Abstract

Experiences of mothers of adult children with autism spectrum disorder (ASD) often are highlighted, with less attention on fathers’ caregiving experiences. Less than 2% of research on caregiving has focused on fathers. However, the predominance of literature among father caregivers examines the experiences of fathers of young children, rather than fathers of adolescents and adults. The present study examines the influence of caregiver burden, perceived informal social support, and number of formal social supports on quality of life reported by a sample of 57 fathers of adult children diagnosed with ASD. Multiple linear regression analysis indicated developmental burden was negatively related to quality of life, with informal social support positively related to quality of life. These findings illustrate the need for professionals to acknowledge the role of fathers in their caregiving roles and encourage them to join or develop social support networks. Extending additional efforts to include fathers of adult children with ASD in both research and practice is important. Understanding the experiences and voices of father caregivers is needed and should be prioritized to enhance the lives of father caregivers, adult children with ASD, and the overall family unit.

vorige artikel Caregiving Interactions and Behaviors in the Care of Children with Rare Genetic or Undiagnosed Conditions

volgende artikel Family Stigma and Community Participation of Arab Children and Youth with Disabilities

Alleen toegankelijk voor geautoriseerde gebruikers

Bekhet, A. K. & Matel-Anderson, D. (2017). Risk and protective factors in the lives of caregivers of persons with autism: caregivers' perspectives. Perspectives in Psychiatric Care, 53(3), 199–207. https://doi.org/10.1111/ppc.12158.CrossRefPubMed

Braunstein, V. L., Peniston, N., Perelman, A., & Cassano, M. C. (2013). The inclusion of fathers in investigations of autistic spectrum disorders. Research in Autism Spectrum Disorders, 7(7), 858–865. https://doi.org/10.1016/j.rasd.2013.03.005.CrossRef

Broady, T. R., Stoyles, G. J., & Morse, C. (2017). Understanding carers’ lived experience of stigma: the voice of families with a child on the autism spectrum. Health & Social Care in the Community, 25(1), 224–233. https://doi.org/10.1111/hsc.12297.CrossRef

Burkert, S., Kendel, F., Kiep, H., Holtkamp, M., & Gaus, V. (2015). Gender differences in social support in persons with epilepsy. Epilepsy & Behavior, 46, 205–208. https://doi.org/10.1016/j.yebeh.2015.02.041.CrossRef

Burrell, A., Ives, J., & Unwin, G. (2017). The experiences of fathers who have offspring with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47, 1135–1147. https://doi.org/10.1007/s10803-017-3035-2.CrossRefPubMedPubMedCentral

Cabrera, N. J., Volling, B. L., & Barr, R. (2018). Fathers are parents, too! Widening the lens on parenting for children’s development. Child Development Perspectives, 12(3), 152–157. https://doi.org/10.1111/cdep.12275.CrossRef

Calleja, S., Islam, F. M. A., Kingsley, J., & McDonald, R. (2020). Healthcare access for autistic adults: a systematic review. Medicine, 99(29). https://doi.org/10.1097/MD.0000000000020899.

Caserta, M. S., Lund, D. A., & Wright, S. D. (1996). Exploring the Caregiver Burden Inventory (CBI): further evidence for a multidimensional view of burden. International Journal of Aging and Human Development, 43(1), 21–34. https://doi.org/10.2190/2DKF-292P-A53W-W0A8.CrossRefPubMed

Cheuk, S., & Lashewicz, B. (2016). How are they doing? Listening as fathers of children with autism spectrum disorder compare themselves to fathers of children who are typically developing. Autism, 20(3), 343–352. https://doi.org/10.1177/1362361315584464.CrossRefPubMed

Chou, K. R., Chu, H., Tseng, C. L., & Lu, R. B. (2003). The measurement of caregiver burden. Journal of Medical Sciences, 23(2), 73–82. https://doi.org/10.6136/JMS.CrossRef

Cidav, Z., Marcus, S. C., & Mandell, D. S. (2012). Implications for childhood autism for parental employment and earnings. Pediatrics, 129(4), 617–623. https://doi.org/10.1542/peds.2011-2700.CrossRefPubMedPubMedCentral

Corcoran, J., Berry, A., & Hill, S. (2015). The lived experience of US parents of children with autism spectrum disorders: a systematic review and meta-synthesis. Journal of Intellectual Disabilities, 19(4), 356–366. https://doi.org/10.1177/1744629515577876.CrossRefPubMed

Cribb, S., Kenny, L., & Pellicano, E. (2019). ‘I definitely feel more in control of my life’: the perspectives of young autistic people and their parents on emerging adulthood. Autism, 23(7), 1765–1781. https://doi.org/10.1177/1362361319830029.CrossRefPubMed

Davys, D., Mitchell, D., & Martin, R. (2017). Fathers of people with intellectual disability: a review of the literature. Journal of Intellectual Disabilities, 21(2), 175–196. https://doi.org/10.1177/1744629516650129.CrossRefPubMed

Derguy, C., Michel, G., M'bailara, K., Roux, S., & Bouvard, M. (2015). Assessing needs in parents of children with autism spectrum disorder: A crucial preliminary step to target relevant issues for support programs. Journal of Intellectual and Developmental Disability, 40(2), 156–166. https://doi.org/10.3109/13668250.2015.1023707.CrossRef

Desmarais, K., Barker, E., & Gouin, J. P. (2018). Service access to reduce parenting stress in parents of children with autism spectrum disorders. Current Developmental Disorders Reports, 5(2), 116–123. https://doi.org/10.1007/s40474-018-0140-7.CrossRef

Dewey, K., & Hodgkinson, M. (2022). The experiences of fathers who have a child with autism spectrum disorder: from birth to adulthood. Advances in Autism, 8(1), 1–13. https://doi.org/10.1007/s10803-017-3035-2.CrossRef

Dudley, K. M., Klinger, M. R., Meyer, A., Powell, P., & Klinger, L. G. (2019). Understanding service usage and needs for adults with ASD: the importance of living situation. Journal of Autism and Developmental Disorders, 49(2), 556–568. https://doi.org/10.1007/s10803-018-3729-0.CrossRefPubMed

Fernández‐Ávalos, M. I., Pérez‐Marfil, M. N., Ferrer‐Cascales, R., Cruz‐Quintana, F., & Fernández‐Alcántara, M. (2021). Feeling of grief and loss in parental caregivers of adults diagnosed with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 34(3), 712–723. https://doi.org/10.1111/jar.12842.CrossRefPubMed

Flippin, M., & Crais, E. R. (2011). The need for more effective father involvement in early autism intervention: a systematic review and recommendations. Journal of Early Intervention, 33(1), 24–50. https://doi.org/10.1177/1053815111400415.CrossRef

Given, C. W., Given, B., Stommel, M., Collins, C., King, S., & Franklin, S. (1992). The Caregiver Reaction Assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Research in Nursing & Health, 15(4), 271–283. https://doi.org/10.1002/nur.4770150406.CrossRef

Gore, N. (2010). Support for fathers of learning disabled children. Community Care, 11(1809), 24–25.

Gottlieb, B. H., & Bergen, A. E. (2010). Social support concepts and measures. Journal of Psychosomatic Research, 69(5), 511–520. https://doi.org/10.1016/j.jpsychores.2009.10.001.CrossRefPubMed

Haider, I., Ahmed, W., & Batool, U. (2020). Caregiver burden among parents of hearing impaired and intellectually disabled children in Pakistan. Iranian Journal of Public Health, 49(2), 249. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7231703/.

Hodgetts, S., McConnell, D., Zwaigenbaum, L., & Nicholas, D. (2017). The impact of autism services on mothers’ psychological wellbeing. Child: Care, Health and Development, 43(1), 18–30. https://doi.org/10.1111/cch.12398.CrossRefPubMed

Khin, E. T., Aung, M. N., Ueno, S., Ahmad, I., Latt, T. S., Moolphate, S., & Yuasa, M. (2021). Social support between diabetes patients and non-diabetes persons in Yangon, Myanmar: a study applying ENRICHD social support instrument. International Journal of Environmental Research and Public Health, 18(14), 7302. https://doi.org/10.3390/ijerph18147302.CrossRefPubMedPubMedCentral

Krauss, M. W., Seltzer, M. M., & Jacobson, H. T. (2005). Adults with autism living at home or in non‐family settings: positive and negative aspects of residential status. Journal of Intellectual Disability Research, 49(2), 111–124. https://doi.org/10.1111/j.1365-2788.2004.00599.x.CrossRefPubMed

Lashewicz, B. M., Shipton, L., & Lien, K. (2019). Meta-synthesis of fathers’ experiences raising children on the autism spectrum. Journal of Intellectual Disabilities, 23(1), 117–131. https://doi.org/10.1177/1744629517719347.CrossRefPubMed

Lien, K., Lashewicz, B., Mitchell, J., & Boettcher, N. (2021). Blending traditional and nurturing fathering: fathers of children with autism managing work and family. Family Relations, 70(1), 264–281. https://doi.org/10.1111/fare.12472.CrossRef

Marsack, C. N. (2016). An examination of quality of life of parents of adult children diagnosed with autism spectrum disorder. Wayne State University, Ann Arbor, Michigan.

Marsack, C. N., & Hopp, F. P. (2019). Informal support, health, and burden among parents of adult children with autism. The Gerontologist, 59(6), 1112–1121. https://doi.org/10.1093/geront/gny082.CrossRefPubMed

Marsack, C. N., & Samuel, P. S. (2017). Mediating effects of social support on quality of life for parents of adults with autism. Journal of Autism and Developmental Disorders, 47, 2378–2389. https://doi.org/10.1007/s10803-017-3157-6.CrossRefPubMed

Marsack-Topolewski, C. N., & Church, H. L. (2019). Impact of caregiver burden on quality of life for parents of adult children with autism spectrum disorder. American Journal on Intellectual and Developmental Disabilities, 124(2), 145–156. https://doi.org/10.1352/1944-7558-124.2.145.CrossRefPubMed

Marsack-Topolewski, C. N., Samuel, P. S., & Peterson, M. D. (2023). Perceptions of caregiver burden and living arrangements of adult children with autism. Families in Society. https://doi.org/10.1177/10443894231170408.

McGrath, P. A. M., & Chesler, M. (2004). Fathers’ perspectives on the treatment for pediatric hematology: extending the findings. Issues in Comprehensive Pediatric Nursing, 27(1), 39–61. https://doi.org/10.1080/01460860490279545.CrossRefPubMed

Mihandoust, S., Khademi, M., & Radfar, M. (2021). Stages of grieving in fathers of autistic children: a qualitative study. European Review for Medical Pharmacological Science, 25(24), 7698–7708.

Miller, S. M., Chan, F., Ferrin, J. M., Lin, C.-P., & Chan, J. Y. C. (2008). Confirmatory factor analysis of the World Health Organization quality of life questionnaire—brief version for individuals with spinal cord injury. Rehabilitation Counseling Bulletin, 51(4), 221–228. https://doi.org/10.1177/0034355208316806.CrossRef

Mitchell, P. H., Powell, L., Blumenthal, J., Norten, J., Ironson, G., Pitula, C. R., Froelicher, E. S., Czajkowski, S., Youngblood, M., Huber, M., & Berkman, L. F. (2003). A short social support measure for patients recovering from myocardial infarction: the ENRICHD Social Support Inventory. Journal of Cardiopulmonary Rehabilitation, 23(6), 398–403.CrossRefPubMed

Myers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009). “My greatest joy and my greatest heart ache:” 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(3), 670–684. https://doi.org/10.1016/j.rasd.2009.01.004.CrossRef

Nijboer, C., Triemstra, M., Tempelaar, R., Sanderman, R., & van den Bos, G. A. (1999). Measuring both negative and positive reactions to giving care to cancer patients: psychometric qualities of the Caregiver Reaction Assessment (CRA). Social Science & Medicine, 48(9), 1259–1269. https://doi.org/10.1016/S0277-9536(98)00426-2.CrossRef

Novak, M., & Guest, C. (1989). Application of a multidimensional caregiver burden inventory. The Gerontologist, 29(6), 798–803. https://doi.org/10.1093/geront/29.6.798.CrossRefPubMed

Ortiz-Rubio, A., Torres-Sánchez, I., Cabrera-Martos, I., Rodríguez-Torres, J., López-López, L., Prados-Román, E., & Valenza, M. C. (2021). The Caregiver Burden Inventory as a sleep disturbance screening tool for parents of children with autism spectrum disorder. Journal of Pediatric Nursing, 61, 166–172. https://doi.org/10.1016/j.pedn.2021.05.013.CrossRefPubMed

Oti-Boadi, M., Asante, K. O., & Malm, E. K. (2020). The experiences of ageing parents of young adults with autism spectrum disorders (ASD). Journal of Adult Development, 27(1), 58–69. https://doi.org/10.1007/s10804-018-09325-6.CrossRef

Padilla-Walker, L. M., & Nelson, L. J. (2019). Parenting emerging adults. In M. H. Bornstein (Ed.), Handbook of parenting: Children and parenting (pp. 168–190). Routledge/Taylor & Francis Group. https://doi.org/10.4324/9780429440847-5.

Paynter, J., Davies, M., & Beamish, W. (2018). Recognising the “forgotten man”: fathers’ experiences in caring for a young child with autism spectrum disorder. Journal of Intellectual & Developmental Disability, 43(1), 112–124. https://doi.org/10.3109/13668250.2017.1293235.CrossRef

Pottas, A., & Pedro, A. (2016). Experiences of father carers of children with autism spectrum disorder: an exploratory study. Journal of Psychology in Africa, 26(6), 551–554. https://doi.org/10.1080/14330237.2016.1250426.CrossRef

Potter, C. A. (2017). Father involvement in the care, play, and education of children with autism. Journal of Intellectual & Developmental Disability, 42(4), 375–384. https://doi.org/10.3109/13668250.2016.1245851.CrossRef

Robinson, S., Weiss, J., Lunsky, Y., & Ouellette-Kuntz, H. (2016). Informal support and burden among parents of adults with intellectual and/or developmental disabilities. Journal of Applied Research in Intellectual Disabilities JARID, 29, 356–365. https://doi.org/10.1111/jar.12184.CrossRefPubMed

Rudelli, N., Straccia, C., & Petitpierre, G. (2021). Fathers of children with autism spectrum disorder: Their perceptions of paternal role a predictor of caregiving satisfaction, self-efficacy and burden. Research in Autism Spectrum Disorders, 83, 101744. https://doi.org/10.1016/j.rasd.2021.101744.CrossRef

Savari, K., Naseri, M., & Savari, Y. (2021). Evaluating the role of perceived stress, social support, and resilience in predicting the quality of life among the parents of disabled children. International Journal of Disability, Development and Education, 1–15. https://doi.org/10.1080/1034912X.2021.1901862.

Seymour, M., Allen, S., Giallo, R., & Wood, C. E. (2022). ‘Dads kind of get forgotten’: the mental health support needs of fathers raising a child with Autism Spectrum Disorder. Journal of Family Studies, 28(4), 1199–1216. https://doi.org/10.1080/13229400.2020.1809491.CrossRef

Sit, H. F., Huang, L., Chang, K., Chau, W. I., & Hall, B. J. (2020). Caregiving burden among informal caregivers of people with disability. British Journal of Health Psychology, 25(3), 790–813. https://doi.org/10.1111/bjhp.12434.CrossRefPubMed

Shepherd, D., Goedeke, S., Landon, J., & Meads, J. (2020). The types and functions of social supports used by parents caring for a child with autism spectrum disorder. Journal of Autism and Developmental Disorders, 1–16. https://doi.org/10.1007/s10803-019-04359-5.

Stoner, J. B., & Stoner, C. R. (2016). Career disruption: the impact of transitioning from a full-time career professional to the primary caregiver of a child with autism spectrum disorder. Focus on Autism and Other Developmental Disabilities, 31(2), 104–114. https://doi.org/10.1177/1088357614528798.CrossRef

Turcotte, P., Mathew, M., Shea, L. L., Brusilovskiy, E., & Nonnemacher, S. L. (2016). Service needs across the lifespan for individuals with autism. Journal of Autism and Developmental Disorders, 46(7), 2480–2489. https://doi.org/10.1007/s10803-016-2787-4.CrossRefPubMed

Vaglio, Jr., J., Conard, M., Poston, W., O’Keefe, J., Haddock, C., House, J., & Spertus, J. (2004). Testing the performance of the ENRICHD Social Support Instrument in cardiac patients. Health and Quality of Life Outcomes, 2(1), 1–5. https://doi.org/10.1186/1477-7525-2-24.CrossRef

Vasilopoulou, E., & Nisbet, J. (2016). The quality of life of parents of children with autism spectrum disorder: a systematic review. Research in Autism Spectrum Disorders, 23, 36–49. https://doi.org/10.1016/j.rasd.2015.11.008.CrossRef

Waizbard-Bartov, E., Yehonatan-Schori, M., & Golan, O. (2019). Personal growth experiences of parents to children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 49(4), 1330–1341. https://doi.org/10.1007/s10803-018-3784-6.CrossRefPubMed

World Health Organization. (1996). WHOQOL—BREF: Introduction, administration, scoring and generic version of the assessment. Retrieved from http://apps.who.int/iris/handle/10665/63529.

Wright, S. D., Wright, C. A., D’Astous, V., & Wadsworth, A. M. (2019). Autism aging. Gerontology & Geriatrics Education, 40(3), 322–338. https://doi.org/10.1080/02701960.2016.1247073.CrossRef

Yamaki, K., Hsieh, K., & Heller, T. (2009). Health profile of aging family caregivers supporting adults with intellectual and developmental disabilities at home. Intellectual and Developmental Disabilities, 47(6), 425–435. https://doi.org/10.1352/1934-9556-47.6.425.CrossRefPubMed

Yao, G., & Wu, C.-H. (2005). Factorial invariance of the WHOQOL-BREF among disease groups. Quality of Life Research, 14(8), 1881–1888. https://doi.org/10.1007/s11136-005-3867-7.CrossRefPubMed

Yoong, A., & Koritsas, S. (2012). The impact of caring for adults with intellectual disability on the quality of life of parents. Journal of Intellectual Disability Research, 56(6), 609–619. https://doi.org/10.1111/j.1365-2788.2011.01501.x.CrossRefPubMed

Zhou, E. S., Penedo, F. J., Bustillo, N. E., Benedict, C., Rasheed, M., Lechner, S., Soloway, M., Kava, B. R., Schneiderman, N., & Antoni, M. H. (2010). Longitudinal effects of social support and adaptive coping on the emotional well-being of survivors of localized prostate cancer. The Journal of Supportive Oncology, 8(5), 196–201. https://doi.org/10.1016/j.suponc.2010.09.004.CrossRefPubMedPubMedCentral

Titel: Fathers of Adult Children with Autism: Examination of Caregiver Burden, Social Support, and Quality of Life
Auteur: Christina N. Marsack-Topolewski
Publicatiedatum: 15-09-2023
Uitgeverij: Springer US
Gepubliceerd in: Journal of Child and Family Studies / Uitgave 11/2023
Print ISSN: 1062-1024
Elektronisch ISSN: 1573-2843
DOI: https://doi.org/10.1007/s10826-023-02673-2

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 11/2023

Family Functioning and Health-Related Quality of Life in Parents of Children with Mental Illness

Preschoolers’ Psychosocial Development, Parents, and Neighborhoods: Towards an Integrative Approach for Immigrant Families

Stigma and Depression in Adolescent Mothers – How Do Types of Households Influence the Mothers’ Mental Well-Being?

Stepfamily Roles, Relationships, and Dynamics: A Review of Stepfamily Typologies

Mental Health of Canadian Military-Connected Children: A Qualitative Study Exploring the Perspectives of Service Providers

Children’s Preferences for Mental Health Service Options that Include Exercise: A Pilot Study