This study examined post-traumatic stress disorder (PTSD) severity in caregivers of children with rare genetic conditions, focusing on the role of socioeconomic variables: education, family income, marital status, residence, and religious practice. One hundred parents were recruited: 50 of children with rare diseases and 50 of healthy children. The rare disease group was recruited via a patient association and Facebook groups; the control group through parenting forums and social media. A purposive and convenience sampling strategy was applied. All participants completed the PTSD Checklist for the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition DSM-5 (PCL-5) and a sociodemographic questionnaire. Data were analyzed using independent samples t-tests and two-way ANOVAs. No significant difference in overall PTSD severity emerged between groups. However, caregivers with higher education showed greater PTSD severity when caring for a child with a rare disease. Other socioeconomic factors were not significant. Tailored mental health support is recommended.
AhadAASanchez-GonzalezMJunqueraP (2023) Understanding and addressing mental health stigma across cultures for improving psychiatric care: A narrative review. Cureus15(5): e39549.
2.
AtkinsJCPadgettCR (2024) Living with a rare disease: Psychosocial impacts for parents and family members – a systematic review. Journal of Child and Family Studies33(2): 617–636.
3.
Becerra CarrilloNGuasconiMBarelloS (2024) The impact of caregiver affiliate stigma on the psychosocial well-being of caregivers of individuals with neurodegenerative disorders: A scoping review. Healthcare12(19): 1957.
4.
BlandenJMacmillanL (2016) Educational inequality, educational expansion and intergenerational mobility. Journal of Social Policy45(4): 589–614.
5.
BrewinCRAndrewsBValentineJD (2000) Meta-analysis of risk factors for posttraumatic stress disorder in trauma-exposed adults. Journal of Consulting and Clinical Psychology68(5): 748–766.
6.
BrunelliAAMurphyGCAthanasouJA (2016) Effectiveness of social support group interventions for psychosocial outcomes: A meta-analytic review. Australian Journal of Rehabilitation Counselling22(2): 104–127.
7.
CarmassiCCorsiMBertelloniCA, et al. (2018) Mothers and fathers of children with epilepsy: Gender differences in post-traumatic stress symptoms and correlations with mood spectrum symptoms. Neuropsychiatric Disease and Treatment14: 1371–1379.
8.
CarmassiCCorsiMBertelloniCA, et al. (2019) Post-traumatic stress and major depressive disorders in parent caregivers of children with a chronic disorder. Psychiatry Research279: 195–200.
9.
CarmassiCDell’OsteVFoghiC, et al. (2021) Post-traumatic stress reactions in caregivers of children and adolescents/young adults with severe diseases: A systematic review of risk and protective factors. International Journal of Environmental Research and Public Health18(1): 189.
10.
ČerneTKrageljLZTurkE, et al. (2024) Experiences of quality of life and access to health services among rare disease caregivers: A scoping review. Orphanet Journal of Rare Diseases19: 319.
11.
Choroby Rzadkie (n.d) About mucopolysaccharidosis. Available at: https://chorobyrzadkie.pl/ (accessed 23 September 2025).
12.
CorsiMOrsiniAPedrinelliV, et al. (2021) PTSD in parents of children with severe diseases: A systematic review to face COVID-19 impact. Italian Journal of Pediatrics47(1): 8.
13.
DonnartAViolletVRoinet-TournayM (2013) Les maladies rares, définitions et épidémiologie [Rare diseases, definitions, and epidemiology]. Soins. Pédiatrie, Puériculture274: 14–16.
14.
DraganMLis-TurlejskaMPopielA, et al. (2020) The Polish adaptation of the PTSD Checklist for DSM-5 (PCL-5): A psychometric study in a clinical sample and in the general population. European Journal of Psychotraumatology11(1): 1733241.
15.
European Parliament and Council of the European Union (2000) Regulation (EC) No 141/2000 of the European Parliament and of the Council of 16 December 1999 on orphan medicinal products. Official Journal of the European Communities L18: 1–5.
16.
FalzaranoFMoxleyJPillemerK, et al. (2022) Family matters: Cross-cultural differences in familism and caregiving outcomes. Journal of Gerontology: Psychological Sciences and Social Sciences77(7): 1269–1279.
17.
Główny Urząd Statystyczny (2020) Struktura wynagrodzeń według zawodów w październiku 2020 roku. Available at: https://stat.gov.pl (accessed 23 September 2025).
18.
GreeningLStoppelbeinL (2007) Brief report: Pediatric cancer, parental coping style, and risk for depressive, posttraumatic stress, and anxiety symptoms. Journal of Pediatric Psychology32(10): 1272–1277.
19.
IseriPKOztenEAkerAT (2006) Posttraumatic stress disorder and major depressive disorder is common in parents of children with epilepsy. Epilepsy & Behavior8(1): 250–255.
20.
LavretskyH (2005) Stress and depression in informal family caregivers of patients with Alzheimer’s disease. Aging Health1(1): 117–133.
21.
LorantVDeliègeDEatonW, et al. (2003) Socioeconomic inequalities in depression: A meta-analysis. American Journal of Epidemiology157(2): 98–112.
22.
MojtabaiR (2010) Mental illness stigma and willingness to seek mental health care in the European Union. Social Psychiatry and Psychiatric Epidemiology45(7): 705–712.
23.
NagataSIFunakosiSAmaeS, et al. (2008) Posttraumatic stress disorder in mothers of children who have undergone surgery for congenital disease at a pediatric surgery department. Journal of Pediatric Surgery43(8): 1480–1486.
Nguengang WakapSLambertDMOlryA, et al. (2020) Estimating cumulative point prevalence of rare diseases: Analysis of the Orphanet database. European Journal of Human Genetics28(2): 165–173.
26.
NorbergALBomanKK (2008) Parent distress in childhood cancer: A comparative evaluation of posttraumatic stress symptoms, depression and anxiety. Acta Oncologica47(2): 267–274.
27.
Ogińska-BulikNJuczyńskiZLis-TurlejskaM, et al. (2018) Polish adaptation of PTSD Checklist for DSM-5 – PCL-5: A preliminary communication. Review of Psychology61(2): 287–291.
28.
OzbayFJohnsonDCDimoulasE, et al. (2007) Social support and resilience to stress: From neurobiology to clinical practice. Psychiatry4(5): 35–40.
29.
PelentsovLJLawsTAEstermanAJ (2015) The supportive care needs of parents with a child with a rare disease: A qualitative descriptive study. Journal of Pediatric Nursing30(1): 17–24.
30.
RoohafzaHRAfsharHKeshteliAH, et al. (2014) What’s the role of perceived social support and coping styles in depression and anxiety?Journal of Research in Medical Sciences19(10): 944–949.
31.
SareenJAfifiTOMcMillanKA, et al. (2011) Relationship between household income and mental disorders: Findings from a population-based longitudinal study. Archives of General Psychiatry68(4): 419–427.
32.
SippelLMLiebmanRESchäferSK, et al. (2024) Sources of social support and trauma recovery: Evidence for bidirectional associations from a recently trauma-exposed community sample. Behavioral Sciences14(4): 284.
33.
UsubiniAGFanettiADe CarliP, et al. (2024) Psychological health and caregiving in families of children with Prader–Willi syndrome: A pilot study. International Journal of Environmental Research and Public Health21(1): 198.
34.
VirtueSMManneSLMeeL, et al. (2014) Psychological distress and psychiatric diagnoses among primary caregivers of children undergoing hematopoietic stem cell transplant: An examination of prevalence, correlates, and racial/ethnic differences. General Hospital Psychiatry36(6): 620–626.
35.
WalkowiakDDomaradzkiJMozrzymasR, et al. (2024) Navigating the unique challenges of caregiving for children with rare diseases: Are the care experiences of all caregivers the same? A focus on life-limiting rare diseases. Journal of Clinical Medicine13(15): 4510.
36.
WanbergCRCsillagBDouglassRP, et al. (2020) Socioeconomic status and well-being during COVID-19: A resource-based examination. Journal of Applied Psychology105(12): 1382–1396.
37.
WeathersFWLitzBTKeaneTM, et al. (2013) The PTSD Checklist for DSM-5 (PCL-5) – Standard [Measurement instrument]. Available at: https://www.ptsd.va.gov (accessed 23 September 2025).
38.
WeissDWeissMRudolphCW, et al. (2022) Tough times at the top: Occupational status predicts changes in job satisfaction in times of crisis. Journal of Vocational Behavior139: 103804.
