Factors influencing the quality of life (QOL) of parents living with at least one adult child with autism spectrum disorders (ASD) was examined in a sample of 249 caregivers categorized into three types: Compound-1: caring for an adult with ASD along with another adult with a disability; Compound-2: caring for an adult child with ASD and other typically developing child[ren]; and Noncompound: caring for an adult child with ASD. Quantitative analyses indicated that self-reported caregiver health was significantly associated with the QOL for all types of caregivers, while the perceptions of caregiving burden and availability of informal social support varied by type of caregiver. Findings provide insight into the need for professionals to augment support to address the needs of aging parents who have compound caregiving responsibilities that can affect their QOL.
AlnazlyE. K.AbojediA. (2019). Psychological distress and perceived burden in caregivers of persons with autism spectrum disorder. Perspectives in Psychiatric Care, 55(3), 501–508. https://doi.org/10.1111/ppc.12356
2.
American Association of Retired Persons and National Alliance for Caregiving. (2020). Caregiving in the United States 2020. AARP. https://doi.org/10.26419/ppi.00103.001
3.
BączykG.KozłowskaK. (2018). The role of demographic and clinical variables in assessing the quality of life of outpatients with rheumatoid arthritis. Archives of Medical Science, 14(5), 1070–1079. https://doi.org/10.5114/aoms.2018.77254
4.
BoakyeH.NsiahA.BelloA. I.QuarteyJ. N. (2017). Burden of care and quality of life among caregivers of stroke survivors: Influence of clinical and demographic variables. British Journal of Medicine & Medical Research, 20(6), 1–10. https://doi.org/10.9734/BJMMR/2017/31903
5.
CakirJ.FryeR. E.WalkerS. J. (2020). The lifetime social cost of autism: 1990–2029. Research in Autism Spectrum Disorders, 72, Article 101502. https://doi.org/10.1016/j.rasd.2019.101502
6.
CapistrantB. D. (2016). Caregiving for older adults and the caregivers’ health: An epidemiologic review. Current Epidemiology Reports, 3(1), 72–80. https://doi.org/10.1007/s40471-016-0064-x
7.
CasertaM. S.LundD. A.WrightS. 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
8.
ÇolakB.KahrimanI. (2023). Evaluation of family burden and quality of life of parents with children with disability. The American Journal of Family Therapy, 51(2), 113–133. https://doi.org/10.1080/01926187.2021.1941421
9.
ConnorsM. H.SeeherK.Teixeira-PintoA.WoodwardM.AmesD.BrodatyH. (2020). Dementia and caregiver burden: A three-year longitudinal study. International Journal of Geriatric Psychiatry, 35(2), 250–258. https://doi.org/10.1002/gps.5244
10.
CribbS.KennyL.PellicanoE. (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
11.
DardasL. A.AhmadM. M. (2014). Validation of the World Health Organization’s quality of life questionnaire with parents of children with autistic disorder. Journal of Autism and Developmental Disorders, 44, 2257–2263. https://doi.org/10.1007/s10803-014-2110-1
12.
DietzP. M.RoseC. E.McArthurD.MaennerM. (2020). National and state estimates of adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 50(12), 4258–4266. https://doi.org/10.1007/s10803-020-04494-4
13.
DückertS.GewohnP.KönigH.SchöttleD.KonnopkaA.RahlffP.ErikF.VogeleyK.SchöttleD.KonnopaA.SchulzH.PethJ. (2023). Multidimensional burden on family caregivers of adults with autism spectrum disorder: A scoping review. Review Journal of Autism and Developmental Disorders. Frontiers in Psychiatry, 14, 1290407. https://doi.org/10.1007/s40489-023-00414-1
14.
FaulF.ErdfelderE.BuchnerA.LangA. G. (2009). Statistical power analyses using G* Power 3.1: Tests for correlation and regression analyses. Behavior Research Methods, 41(4), 1149–1160. https://doi.org/10.3758/BRM.41.4.1149
15.
García-CandelJ. A.Bernárdez-GómezA.Belmonte-AlmagroM. L. (2024). Family perceptions about the methodology of the “We All Are Campus” training program. International Journal of Educational Methodology, 10(3), 387–396. https://doi.org/10.12973/ijem.10.3.387
16.
GeorgeL. K.GwytherL. P. (1986). Caregiver well-being: A multidimensional examination of family caregivers of demented adults. The Gerontologist, 26(3), 253–259. https://doi.org/10.1093/geront/26.3.253
17.
GillisA.RoskamI. (2019). Daily exhaustion and support in parenting: Impact on the quality of the parent–child relationship. Journal of Child and Family Studies, 28, 2007–2016. https://doi.org/10.1007/s10826-019-01428-2
18.
GivenC. W.GivenB.StommelM.CollinsC.KingS.FranklinS. (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
19.
GoedekeS.ShepherdD.LandonJ.TaylorS. (2019). How perceived support relates to child autism symptoms and care-related stress in parents caring for a child with autism. Research in Autism Spectrum Disorders, 60, 36–47. https://doi.org/10.1016/j.rasd.2019.01.005
20.
GouinJ. P.HantsooL.Kiecolt-GlaserJ. K. (2008). Immune dysregulation and chronic stress among older adults: A review. Neuroimmunomodulation, 15, 251–259. https://doi.org/10.1159/000156468
21.
GreenfieldJ. C.HascheL.BellL. M.JohnsonH. (2018). Exploring how workplace and social policies relate to caregivers’ financial strain. Journal of Gerontological Social Work, 61(8), 849–866. https://doi.org/10.1080/01634372.2018.1487895
22.
GreyJ. M.TotsikaV.HastingsR. P. (2018). Physical and psychological health of family carers co-residing with an adult relative with an intellectual disability. Journal of Applied Research in Intellectual Disabilities, 31, 191–202. https://doi.org/10.111/jar.12353
23.
HubertS.AujoulatI. (2018). Parental burnout: When exhausted mothers open up. Frontiers in Psychology, 9, Article 357722.
24.
Kelley-GillespieN. (2009). An integrated conceptual model of quality of life for older adults based on a synthesis of the literature. Applied Research in Quality of Life, 4(3), 259–282. https://doi.org/10.1007/s11482-009-9075-9
25.
KuruN.PiyalB. (2018). Perceived social support and quality of life of parents of children with autism. Nigerian Journal of Clinical Practice, 21(9), 1182–1189. https://doi.org/.4103/njcp.njcp_13_18
26.
LancastleD.HillJ.FaulknerS.CousinsA. L. (2022). “The stress can be unbearable, but the good times are like finding gold”: A phase one modelling survey to inform the development of a self-help positive reappraisal coping intervention for caregivers of those with autism spectrum disorder. PLOS ONE, 17(3), Article e0264837. https://doi.org/10.1371/journal.pone.0264837
27.
LavelleT. A.WeinsteinM. C.NewhouseJ. P.MunirK.KuhlthauK. A.ProsserL. A. (2014). Economic burden of childhood autism spectrum disorders. Pediatrics, 133(3), e520–e529. https://doi.org/10.1542/peds.2013-0763
28.
LeeC. E.BurkeM. M.PerkinsE. A. (2022). Compound caregiving: Toward a research agenda. Intellectual and Developmental Disabilities, 60(1), 66–79. https://doi.org/10.1352/1934-9556-60.1.66
29.
LiW. O.FanT. W.Kai-Ching YuC. (2012). Difficulty and burden experienced by principal family caregivers of people with intellectual disabilities in Hong Kong. Asia Pacific Journal of Counselling and Psychotherapy, 3(1), 95–105. https://doi.org/10.1080/21507686.2011.620974
30.
LightfootE.LaLiberteT.ChoM. (2018). Parental supports for parents with disabilities. Child Welfare, 96(4), 89–110.
31.
LunskyY.RobinsonS.BlinkhornA.Ouellette-KuntzH. (2017). Parents of adults with intellectual and developmental disabilities (IDD) and compound caregiving responsibilities. Journal of Child and Family Studies, 26, 1374–1379. https://doi.org/10.1007/s10826-017-0656-1
32.
Marsack-TopolewskiC. N.PerryT. E.ChanK. T. (2021). “I’m glad she chose me as her parent”: Rewards of caregiving for adults with autism. Family Relations, 70(5), 1465–1476. https://doi.org/10.1111/fare.12515
33.
MarsackC. N. (2016). An examination of quality of life of parents of adult children diagnosed with autism spectrum disorder [Doctoral dissertation]. Wayne State University. https://digitalcommons.wayne.edu/oa_dissertations/1461/
34.
MarsackC. N.PerryT. E. (2018). Aging in place in every community: Social exclusion experiences of parents of adult children with autism spectrum disorder. Research on Aging, 40(6), 535–557. https://doi.org/10.1177/0164027517717044
35.
MarsackC. N.SamuelP. 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
36.
Marsack-TopolewskiC. N.ChurchH. 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
37.
MasefieldS. C.PradyS. L.SheldonT. A.SmallN.JarvisS.PickettK. E. (2020). The caregiver health effects of caring for young children with developmental disabilities: A meta-analysis. Maternal and Child Health Journal, 24, 561–574. https://doi.org/10.1007/s10995-020-02896-5
38.
MillerS. M.ChanF.FerrinJ. M.LinC.-P.ChanJ. 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
39.
MitchellP. H.PowellL.BlumenthalJ.NortenJ.IronsonG.PitulaC. R.FroelicherE. S.CzajkowskiS.YoungbloodM.HuberM.BerkmanL. 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. https://doi.org/10.1097/00008483-200311000-00001
40.
NijboerC.TriemstraM.TempelaarR.SandermanR.van den BosG. 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
41.
NovakM.GuestC. (1989). Application of a multidimensional Caregiver Burden Inventory. The Gerontologist, 29(6), 798–803. https://doi.org/10.1093/geront/29.6.798
42.
Ortiz-RubioA.Torres-SánchezI.Cabrera-MartosI.Rodríguez-TorresJ.López-LópezL.Prados-RománE.ValenzaM. 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
43.
Oti-BoadiM.AsanteK. O.MalmE. K. (2019). The experiences of ageing parents of young adults with autism spectrum disorders (ASD). Journal of Adult Development, 27, 58–69. https://doi.org/10.1007/s10804-018-09325-6
44.
PearlinL. I.MenaghanE. G.LiebermanM. A.MullanJ. T. (1981). The stress process. Journal of Health and Social Behavior, 22(4), 337–356. https://doi.org/10.2307/2136676
45.
PerkinsE. A. (2010). The compound caregiver: A case study of multiple caregiving roles. Clinical Gerontologist, 33(3), 248–254. https://doi.org/10.1080/07317111003773619
46.
PerkinsE. A.HaleyW. E. (2010). Compound caregiving: When lifelong caregivers undertake additional caregiving roles. Rehabilitation Psychology, 55(4), 409–417. https://doi.org/10.1037/a0021521
RainaP.O’DonnellM.SchwellnusH.RosenbaumP.KingG.BrehautJ.RussellD.SwintonM.KingS.WongM.WalterS. D.WoodE. (2004). Caregiving process and caregiver burden: Conceptual models to guide research and practice. BMC Pediatrics, 4, Article 1. https://doi.org/10.1186/1471-2431-4-1
49.
RentyJ.RoeyersH. (2006). Satisfaction with formal support and education for children with autism spectrum disorder: The voices of the parents. Child: Care, Health and Development, 32(3), 371–385. https://doi.org/10.1111/j.1365-2214.2006.00584.x
50.
RobinsonS.WeissJ. A. (2020). Examining the relationship between social support and stress for parents of individuals with autism. Research in Autism Spectrum Disorders, 74, Article 101557. https://doi.org/10.1016/j.rasd.2014.11.003
51.
RoggeN.JanssenJ. (2019). The economic costs of autism spectrum disorder: A literature review. Journal of Autism and Developmental Disorders, 49(7), 2873–2900. https://doi.org/10.1007/s10803-019-04014-z
52.
SalvadorÁ.CrespoC.MartinsA. R.SantosS.CanavarroM. C. (2015). Parents’ perceptions about their child’s illness in pediatric cancer: Links with caregiving burden and quality of life. Journal of Child and Family Studies, 24(4), 1129–1140. https://doi.org/10.1007/s10826-014-9921-8
53.
SchulzR.EdenJ.& National Academies of Sciences Engineering, and Medicine. (2016). Family caregiving roles and impacts. In Committee on Family Caregiving for Older Adults, Board on Health Care Services, Health and Medicine Division, National Academies of Sciences, Engineering, and Medicine, SchulzR.EdenJ. (Eds.), Families caring for an aging America (73–122). National Academies Press.
54.
SitH. F.HuangL.ChangK.ChauW. I.HallB. 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
55.
SpiersG. (2015). Choice and caring: The experiences of parents supporting young people with autistic spectrum conditions as they move into adulthood. Children & Society, 29(6), 546–557. https://doi.org/10.1111/chso.12104
56.
SticinskiE. V.EidelmanS.KarpynA.ChaiS. C.EarnshawV. A. (2022). Social support access among single caregivers with children on the autism spectrum. Research in Developmental Disabilities, 128, Article 104291. https://doi.org/10.1016/j.ridd.2022.104291
57.
VaglioJ.JrConardM.PostonW.O’KeefeJ.HaddockC.HouseJ.SpertusJ. (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
58.
VillaescusaM.Martínez-RuedaN.FernándezA. (2021). Support for families of youths and adults with intellectual disabilities: Contributions of a program from families’ and specialists’ perspectives. Education Sciences, 11(2), Article 88. https://doi.org/10.3390/educsci11020088
59.
Visser-MeilyJ. M.PostM. W.RiphagenI. I.LindemanE. (2004). Measures used to assess burden among caregivers of stroke patients: A review. Clinical Rehabilitation, 18(6), 601–623. https://doi.org/10.1191/0269215504cr776oa
60.
VoganV.LakeJ. K.WeissJ. A.RobinsonS.TintA.LunskyY. (2014). Factors associated with caregiver burden among parents of individuals with ASD: Differences across intellectual functioning. Family Relations, 63(4), 554–567. https://doi.org/10.1111/fare.12081
61.
Waizbard-BartovE.Yehonatan-SchoriM.GolanO. (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
62.
World Health Organization Quality of Life Group. (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine, 28(3), 551–558. https://doi.org/10.1017/S0033291798006667
63.
WolffJ. L.SpillmanB. C.FreedmanV. A.KasperJ. D. (2016). A national profile of family and unpaid caregivers who assist older adults with health care activities. Journal of the American Medical Association Internal Medicine, 176(3), 372–379. https://doi.org/10.1001/jamainternmed.2015.7664
64.
World Health Organization Quality of Life Group. (1996). Development of the WHOQOL: Rationale and current status. International Journal of Mental Health, 23, 24–56. https://doi.org/10.1080/00207411.1994.11449286
65.
YoongA.KoritsasS. (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
66.
YuC. K. C.FanT. W.LiW. O. (2012). Diagnostic characteristics of care receivers with intellectual disabilities and the difficulty and burden experienced by family caregivers. Asia Pacific Journal of Counselling and Psychotherapy, 3(2), 202–211. https://doi.org/10.1080/21507686.2012.717231
