Children of people with Huntington's disease (HD) often face a wide range of early psychological challenges which may lead to further psychological difficulties later in life.
Objective
This exploratory retrospective study aimed to investigate the relationship between childhood traumatic experiences and psychological difficulties during adulthood in individuals raised in HD families compared to matched controls.
Methods
Thirty-eight adult children of people with HD and 20 matched controls completed a demographic questionnaire, the Childhood Trauma Questionnaire-Short Form (CTQ-SF), and the Symptom Checklist-90-Revised (SCL-90-R). Mann–Whitney U Tests were used to compare groups on all measures. A multiple regression model was developed within the HD Family group to investigate which aspects of childhood trauma best predicted psychological distress in adulthood.
Results
Compared to controls, people raised in an HD family reported significantly more total childhood trauma as well emotional abuse, physical abuse, and emotional and physical neglect. Global psychological distress in adulthood, depression, and psychoticism were also observed to be significantly higher in the HD Family Group. The regression model identified childhood emotional abuse as the only significant predictor of global psychological distress in adulthood.
Conclusions
Growing up in an HD family may be significantly associated with higher levels of self-reported childhood trauma as well as psychological distress in adulthood, with emotional abuse playing a more significant role in shaping long-term mental health outcomes.
EddyCMRickardsH. Social cognition and quality of life in Huntington’s disease. Front Psychiatry2022; 13: 963457.
4.
WahlinTBRByrneGJ. Cognition in Huntington’s disease. In: JohnsonD (eds) Huntington’s disease – Core concepts and current advances. Rijeka: InTech, 2012.
5.
ZarottiNDaleMEcclesFJR, et al.More than just a brain disorder: a five-point manifesto for psychological care for people with Huntington’s disease. J Pers Med2022; 12: 64.
6.
ZarottiNFletcherISimpsonJ. New perspectives on emotional processing in people with symptomatic Huntington’s disease: impaired emotion regulation and recognition of emotional body language. Arch Clin Neuropsychol2019; 34: 610–624.
7.
HaydenMREhrlichRParkerH, et al.Social perspectives in Huntington’s chorea. S Afr Med J1980; 58: 201–203.
8.
RoscoeLACorsentinoEWatkinsS, et al.Well-being of family caregivers of persons with late-stage Huntington’s disease: lessons in stress and coping. Health Commun2009; 24: 239–248.
Rodríguez-SantanaIMestreTSquitieriF, et al.Economic burden of Huntington disease in Europe and the USA: results from the Huntington’s Disease Burden of Illness study. Eur J Neurol2023; 30: 1109–1117.
11.
Modrzejewska-ZielonkaERenMMłodakA, et al.Huntington’s disease progression and caregiver burden. Eur Neurol2022; 85: 398–403.
12.
HergertDCCiminoCR. Predictors of caregiver burden in Huntington’s disease. Arch Clin Neuropsychol2021; 36: 1426–1437.
13.
RøthingMMalterudKFrichJC. Balancing needs as a family caregiver in Huntington’s disease: a qualitative interview study. Health Soc Care Community2015; 23: 569–576.
14.
KapteinAAScharlooMHelderDI, et al.Quality of life in couples living with Huntington’s disease: the role of patients’ and partners’ illness perceptions. Qual Life Res2007; 16: 793–801.
15.
RichardsF. Couples’ experiences of predictive testing and living with the risk or reality of Huntington disease: a qualitative study. Am J Med Genet A2004; 126A: 170–182.
16.
RichardsFWilliamsK. Impact on couple relationships of predictive testing for Huntington disease: a longitudinal study. Am J Med Genet A2004; 126A: 161–169.
17.
QuaidKAWessonMK. Exploration of the effects of predictive testing for Huntington disease on intimate relationships. Am J Med Genet1995; 57: 46–51.
18.
ReadJJonesROwenG, et al.Quality of life in Huntington’s disease: a comparative study investigating the impact for those with pre-manifest and early manifest disease, and their partners. J Huntingtons Dis2013; 2: 159–175.
19.
VamosMHambridgeJEdwardsM, et al.The impact of Huntington’s disease on family life. Psychosomatics2007; 48: 400–404.
20.
KavanaughM. Children and adolescents providing care to a parent with Huntington’s disease: disease symptoms, caregiving tasks and young carer well-being. Child Youth Care Forum2014; 43: 675–690.
21.
BoileauNRPaulsenJSReadyRE, et al.Understanding domains that influence perceived stigma in individuals with Huntington disease. Rehabil Psychol2020; 65: 113–121.
22.
ZarottiND’AlessioBScocchiaM, et al.‘I wouldn’t even know what to ask for’: patients’ and caregivers’ experiences of psychological support for Huntington’s disease in Italy. NeuroSci2024; 5: 98–113.
23.
WinnbergEWinnbergUPohlkampL, et al.What to do with a second chance in life? Long-term experiences of non-carriers of Huntington’s disease. J Genet Couns2018; 27: 1438–1446.
24.
OsawaHMatsukawaMYoshidaA, et al.Psychosocial impact on individuals who received negative test results from predictive testing for Huntington’s disease: an exploratory qualitative study. J Genet Couns2025; 34: e1981.
25.
KeenanKFMiedzybrodzkaZvan TeijlingenE, et al.Young people’s experiences of growing up in a family affected by Huntington’s disease. Clin Genet2007; 71: 120–129.
26.
SparbelKJHDriessnackMWilliamsJK, et al.Experiences of teens living in the shadow of Huntington disease. J Genet Couns2008; 17: 327–335.
27.
WilliamsJKAyresLSpechtJ, et al.Caregiving by teens for family members with Huntington disease. J Fam Nurs2009; 15: 273–294.
28.
Van der MeerLTimmanRTrijsburgW, et al.Attachment in families with Huntington’s disease: a paradigm in clinical genetics. Patient Educ Couns2006; 63: 246–254.
29.
DaleMWoodAZarottiN, et al.Using a clinical formulation to understand psychological distress in people affected by Huntington’s disease: a descriptive, evidence-based model. J Pers Med2022; 12: 1–19.
30.
Van der MeerLvan DuijnEWolterbeekR, et al.Offspring of a parent with genetic disease: childhood experiences and adult psychological characteristics. Health Psychol2014; 33: 1445–1453.
31.
BernsteinDPSteinJANewcombMD, et al.Development and validation of a brief screening version of the Childhood Trauma Questionnaire. Child Abuse Negl2003; 27: 169–190.
32.
BernsteinDPFinkL. Childhood Trauma Questionnaire: A retrospective self-report. Manual. San Antonio, TX: Psychological Corporation, 1998.
33.
InnamoratiMErbutoDVenturiniP, et al.Factorial validity of the Childhood Trauma Questionnaire in Italian psychiatric patients. Psychiatry Res2016; 245: 297–302.
34.
GeorgievaSTomasJMNavarro-PérezJJ. Systematic review and critical appraisal of Childhood Trauma Questionnaire — Short Form (CTQ-SF). Child Abuse Negl2021; 120: 105223.
35.
SacchiCVienoASimonelliA. Italian Validation of the Childhood Trauma Questionnaire-Short Form on a college group. Psychol Trauma2018; 10: 563–571.
36.
DerogatisLR. SCL-90-R: Administration, scoring & procedures manual-II for the Revised version and other instruments of the psychopathology rating scale series. 2nd ed. Towson, MD: Clinical Psychometric Research, 1992.
37.
LignierBPetotJMCanadaB, et al.The structure of the Symptom Checklist-90-Revised: global distress, Somatization, Hostility, and Phobic Anxiety scales are reliable and robust across community and clinical samples from four European countries. Psychiatry Res2024; 331: 115635.
38.
CarrozzinoDVassendOBjørndalF, et al.A clinimetric analysis of the Hopkins Symptom Checklist (SCL-90-R) in general population studies (Denmark, Norway, and Italy). Nord J Psychiatry2016; 70: 374–379.
39.
LandwehrmeyerGBFitzer-AttasCJGiulianoJD, et al.Data analytics from Enroll-HD, a global clinical research platform for Huntington’s disease. Mov Disord Clin Pract2017; 4: 212–224.
40.
FieldA. Discovering statistics using IBM SPSS Statistics. 5th ed. London: Sage, 2018.
41.
KjoelaasSJensenTKFeragenKB. ‘I knew it wasn’t normal, I just didn’t know what to do about it’: adversity and caregiver support when growing up in a family with Huntington’s disease. Psychol Health2022; 37: 211–229.
42.
Idárraga-CabreraCDueñasJMPinoM, et al.Resilience in children and adolescents at risk of poverty and with parents suffering from Huntington’s disease. Vulnerable Child Youth Stud2021; 16: 380–388.
43.
MandCMGillamLDuncanRE, et al.‘I’m scared of being like mum’: the experience of adolescents living in families with Huntington disease. J Huntingtons Dis2015; 4: 209–217.
44.
KjoelaasSTilleråsKHFeragenKB. The ripple effect: a qualitative overview of challenges when growing up in families affected by Huntington’s disease. J Huntingtons Dis2020; 9: 129–141.
45.
AubeeluckAVBuchananHStuppleEJN. ‘All the burden on all the carers’: exploring quality of life with family caregivers of Huntington’s disease patients. Qual Life Res2012; 21: 1425–1435.
46.
WilliamsJKSkirtonHPaulsenJS, et al.The emotional experiences of family carers in Huntington disease. J Adv Nurs2009; 65: 789–798.
47.
WongMTHChangPCMYuYL, et al.Psychosocial impact of Huntington’s disease on Hong Kong Chinese families. Acta Psychiatr Scand1994; 90: 16–18.
48.
FolsteinSEFranzMLJensenBA, et al.Conduct disorder and affective disorder among the offspring of patients with Huntington’s disease. Psychol Med1983; 13: 45–52.
49.
PierceMHopeHFKoladeA, et al.Effects of parental mental illness on children’s physical health: systematic review and meta-analysis. Br J Psychiatry2020; 217: 354–363.
50.
GladstoneBMBoydellKMSeemanMV, et al.Children’s experiences of parental mental illness: a literature review. Early Interv Psychiatry2011; 5: 271–289.
ZarottiNDaleMEcclesF, et al.Psychological interventions for people with Huntington’s disease: a call to arms. J Huntingtons Dis2020; 9: 231–243.
53.
De VilliersCWeskampKBryerA. The sword of Damocles: the psychosocial impact of familial spinocerebellar ataxia in South Africa. Am J Med Genet B Neuropsychiatr Genet1997; 74: 270–274.
54.
LiSDouglasTFitzgeraldDA. Psychosocial needs and interventions for young children with cystic fibrosis and their families. Paediatr Respir Rev2023; 46: 30–36.
55.
Sommers-SpijkermanMRaveNKruitwagen-van ReenenE, et al.Parental and child adjustment to amyotrophic lateral sclerosis: transformations, struggles and needs. BMC Psychol2022; 10: 72.
56.
ZarottiNMayberryEOvaska-StaffordN, et al.Psychological interventions for people with motor neuron disease: a scoping review. Amyotroph Lateral Scler Frontotemporal Degener2021; 22: 1–11.
