Document Type : Original Article
Authors
Department of Health Promotion and Education, School of Public Health, Tehran University of Medical Sciences, Tehran, Iran
Abstract
BACKGROUND: Living with children with autism spectrum disorder (ASD) can affect different
aspects of parents’ physical and mental health and quality of life. This study aimed to identify parents’
perceptions of their quality of life and factors influencing such perceptions and investigate how they
cope with difficulties in their daily lives.
MATERIALS AND METHODS: This study was conducted using a qualitative research design to gain
insight into how children with ASD may influence their parents’ quality of life. A total of 31 parents
and school counselors were selected by the snowball sampling method in autism schools in Tehran
in the academic year 2018–2019. Semi‑structured interviews were used to collect the data. Each
interview was held based on a preprepared guideline by the researchers. In‑depth questions were
also asked as needed. Finally, the data were analyzed using the content analysis approach.
RESULTS: The participants reported a variety of difficulties and crises to cope with in their daily
lives. The factors reported to decrease the quality of life were categorized into six main themes and
20 subthemes. The main themes included “family interactions,” “parenting,” “daily living,” “health,”
“financial issues,” and “community‑related.”
CONCLUSIONS: Due to the diversity and multilevel factors affecting the quality of life of parents
having children with ASD, it is essential to adopt a comprehensive approach with the participation
of all stakeholders in the development, design, and implementation of future interventions.
Keywords
1. Faraji‑Khiavi F, Zahiri M, Amiri E, Dindamal B, Pirani N.
The experiences of families raising autistic children:
A phenomenological study. J Educ Health Promot 2021;10:78.
2. Fombonne E. Epidemiological controversies in autism. Swiss Arch
Neurol Psychiatr Psychother 2020;171:w03084.
3. Baxter AJ, Brugha TS, Erskine HE, Scheurer RW, Vos T, Scott JG.
The epidemiology and global burden of autism spectrum
disorders. Psychol Med 2015;45:601‑13.
4. Hodges H, Fealko C, Soares N. Autism spectrum disorder:
Definition, epidemiology, causes, and clinical evaluation. Transl
Pediatr 2020;9:S55‑65.
5. Mohammadi MR, Ahmadi N, Khaleghi A, Zarafshan H,
Mostafavi SA, Kamali K, et al. Prevalence of autism and its
comorbidities and the relationship with maternal psychopathology:
A national population‑based study. Arch Iran Med 2019;22:546‑53.
6. Matson JL, Kozlowski AM. The increasing prevalence of autism
spectrum disorders. Res Autism Spectr Disord 2011;5:418‑25.
7. Kirby AV, Williams KL, Watson LR, Sideris J, Bulluck J,
Baranek GT. Sensory features and family functioning in families of
children with autism and developmental disabilities: Longitudinal
associations. Am J Occup Ther 2019;73:7302205040.
8. Benevides TW, Lee J, Nwosu NA, Franks J. Understanding the
family impact of autism spectrum disorder in a racially and
ethnically diverse sample: Findings from the national survey of
children with special health care needs. Matern Child Health J
2019;23:951‑60.
9. Gentles SJ, Nicholas DB, Jack SM, McKibbon KA, Szatmari P.
Coming to understand the child has autism: A process illustrating
parents’ evolving readiness for engaging in care. Autism
2020;24:470‑83.
10. Jeoung B. Study of the relationships between the health condition,
caring in terms of health practice behavior on quality of life
of parents of children with developmental disabilities. J Exerc
Rehabil 2019;15:826‑31.
11. Mosadeghrad AM, Pourreza A, Akbarpour N. Economic burden
of autism spectrum disorders in Iran. Tehran Univ Med J
2019;76:665‑71.
12. RoggeN, JanssenJ. The economic costs of autism spectrum disorder:
A literature review. J Autism Dev Disord 2019;49:2873‑900.
13. Scott EK. Mother‑ready jobs: Employment that works for mothers
of children with disabilities. J Fam Issues 2018;39:2659‑84.
14. Renford NG, Arulappan J, Thomas KD, Karuppiah KM,
Chinnathambi K, Thangaswamy GC. Quality of life of caregivers
of children with autism spectrum disorder in Tamil Nadu, South
India. Int J Nutr Pharmacol Neurol Dis 2020;10:57‑64.
15. Hoseinnejad H, Chopaniyan F, Sarvi Moghanlo O, Rostami M,
Dadkhah A. Marital satisfaction and happiness in parents with
autistic and normal children. Iran Rehabil J 2020;18:49‑56.
16. McStay RL, Dissanayake C, Scheeren A, Koot HM, Begeer S.
Parenting stress and autism: The role of age, autism severity,
quality of life and problem behaviour of children and adolescents
with autism. Autism. 2014:18:502‑10.
17. Kuhlthau K, Payakachat N, Delahaye J, Hurson J, Pyne JM,
Kovacs E, et al. Quality of life for parents of children with autism
spectrum disorders. Res Autism Spectr Disord 2014;8:1339‑50.
18. Gau SS, Chou MC, Chiang HL, Lee JC, Wong CC, Chou WJ, et al.
Parental adjustment, marital relationship, and family function
in families of children with autism. Res Autism Spectr Disord
2012;6:263‑70.
19. Liu R, Dong H, Wang Y, Lu X, Li Y, Xun G, et al. Sleep problems
of children with autism may independently affect parental quality
of life. Child Psychiatry Hum Dev 2021;52:488‑99.
20. Mirzaie H, Jamshidian E, Hosseini SA. Routines in families of
children with Autism. Arch Rehabil 2018;19:184‑93.
21. Klukowski M, Wasilewska J, Lebensztejn D. Sleep and
gastrointestinal disturbances in autism spectrum disorder in
children. Dev Period Med 2015;19:157‑61.
22. Johnson CR, Smith T, DeMand A, Lecavalier L, Evans V,
Gurka M, et al. Exploring sleep quality of young children with
autism spectrum disorder and disruptive behaviors. Sleep Med
2018;44:61‑6.
23. Tait K, Fung F, Hu A, Sweller N, Wang W. Understanding Hong
Kong Chinese families’ experiences of an autism/ASD diagnosis.
J Autism Dev Disord 2016;46:1164‑83.
24. Theofilou P. Quality of life: Definition and measurement. Eur J
Psychol 2013;9:1841‑0413.
25. Keyvanara M, Khasti BY, Zadeh MR, Modaber F. Study of the
relationship between quality of life and socioeconomic status in
Isfahan at 2011. J Educ Health Promot 2015;4:92.
26. Kamali M, Ostadhashemi L, Khalvati M, Nourozi S, Nafei A.
Quality of life of the physically disabled: A systematic review.
Pajouhan Sci J 2013;12:27‑35.
27. Amiri Majd M, Hosseini SF, Jafari A. Comparing the quality of
life and marital intimacy among parents of children with Down
syndrome, parents of children with learning disabilities, and
parents of normal children. J Learn Disabil 2014;4:38‑55.
28. Khorramabadi R, Pouretemad H, Mazaheri A, Dehghani M,
Khosroshahi S. The effctiveness of the ‘little bird program in
the general health of mothers with autistic children. J Fam Res
2011;7:325‑41.
29. Özgür BG, Aksu H, Eser E. Factors affecting quality of life of
caregivers of children diagnosed with autism spectrum disorder.
Indian J Psychiatry 2018;60:278‑85.
30. Schlebusch L, Dada S, Samuels AE. Family quality of life of South
African families raising children with autism spectrum disorder.
J Autism Dev Disord 2017;47:1966‑77.
31. Soltanifar A, Akbarzadeh F, Moharreri F, Soltanifar A, Ebrahimi A,
Mokhber N, et al. Comparison of parental stress among mothers
and fathers of children with autistic spectrum disorder in Iran.
ran J Nurs Midwifery Res 2015;20:93‑98.
32. Riany YE, Cuskelly M, Meredith P. Parenting style and parent–
child relationship: A comparative study of Indonesian parents
of children with and without Autism Spectrum Disorder (ASD).
J Child Fam Stud 2017;26:3559‑71.
33. Bagatell NJ, Cram M, Alvarez CG, Loehle L. Routines of families
with adolescents with autistic disorders: A comparison study.
Can J Occup Ther 2014;81:62‑7.
34. Boyd BA, McCarty CH, Sethi C. Families of children with
autism: A synthesis of family routines literature. J. Occup. Sci
2014;21:322‑33.
35. Marquenie K, Rodger S, Mangohig K, Cronin A. Dinnertime and
bedtime routines and rituals in families with a young child with
an autism spectrum disorder. Aust Occup Ther J 2011;58:145‑54.
36. Parsons D, Cordier R, Lee H, Falkmer T, Vaz S. Stress, coping, and
quality of life in families with a child with ASD living regionally.
J Child Fam Stud 2020;29:546‑58.
37. Schroder CM, Malow BA, Maras A, Melmed RD, Findling RL,
Breddy J, et al. Pediatric prolonged‑release melatonin for sleep
in children with autism spectrum disorder: Impact on child
behavior and caregiver’s quality of life. J Autism Dev Disord
2019;49:3218‑30.
38. Lawson LP, Richdale AL, Haschek A, Flower RL, Vartuli J,
Arnold SR, et al. Cross‑sectional and longitudinal predictors
of quality of life in autistic individuals from adolescence to
adulthood: The role of mental health and sleep quality. Autism
2020;24:954‑67.
39. Pastor‑Cerezuela G, Fernández‑Andrés MI, Tárraga‑Mínguez R,
Navarro‑Peña JM. Parental stress and ASD: Relationship with autism symptom severity, IQ, and resilience. Focus Autism Other
Dev Disabl 2016;31:300‑11.
40. Fletcher PC, Markoulakis R, Bryden PJ. The costs of caring for a
child with an autism spectrum disorder. Issues Compr Pediatr
Nurs 2012;35:45‑69.
41. Ekmann A, Petersen I, Mänty M, Christensen K, Avlund K.
Fatigue, general health, and ischemic heart disease in older adults.
J Gerontol A Biol Sci Med Sci 2013;68:279‑85.
42. Safar Hamidi E, Bashirgonbadi S, Hosseinian S. Relationship of
psychological well‑being and quality of life with spiritual health
in mothers with mentally disabled children. J Pizhuhish Salamat
2019;5:37‑49.
43. Farshad MR, Amirfakhraei A, Taghadosinia R, Askari M.
Prediction of quality of life based on spiritual intelligence and
resiliency in mothers of children with behavioral problems. Health
Spiritual Med Ethics 2020;7:56‑64.
44. AsadiR. Studying the influence of family members’ depression on
the life quality of the disabled with an emphasis on their spiritual
and mental health. J Stud Soc Sci Humanit 2016;2:138‑42.
45. Hodge DR, Sun F. Positive feelings of caregiving among Latino
Alzheimer’s family caregivers: Understanding the role of
spirituality. Aging Ment Health 2012;16:689‑98.
46. DePape AM, Lindsay S. Parents’ experiences of caring for a child
with autism spectrum disorder. Qual Health Res 2015;25:569‑83.
47. Saunders BS, Tilford JM, Fussell JJ, Schulz EG, Casey PH, Kuo DZ.
Financial and employment impact of intellectual disability on
families of children with autism. Fam Syst Health 2015;33:36‑45.
48. Kapp S, Santamaria N. The financial and quality‐of‐life cost to
patients living with a chronic wound in the community. Int
Wound J 2017;14:1108‑19.
49. Zhai Z, Zhou X, Zhang S, Xie W, Wan J, Kuang T, et al. The impact
and financial burden of pulmonary arterial hypertension on
patients and caregivers: Results from a national survey. Medicine
2017;96:e6783.
50. Shepherd CA, Waddell C. A qualitative study of autism policy in
Canada: Seeking consensus on children’s services. J Autism Dev
Disord 2015;45:3550‑64.
51. Mohammadi F, Rakhshan M, Molazem Z, Zareh N. Parental
empowerment of the parents of children with autism: Aqualitative
study. Sadra Med J 2018;6:261‑74.
52. Kuru N, Piyal B. Perceived social support and quality of life of
parents of children with Autism. Niger J Clin Pract 2018;21:1182‑9.
The experiences of families raising autistic children:
A phenomenological study. J Educ Health Promot 2021;10:78.
2. Fombonne E. Epidemiological controversies in autism. Swiss Arch
Neurol Psychiatr Psychother 2020;171:w03084.
3. Baxter AJ, Brugha TS, Erskine HE, Scheurer RW, Vos T, Scott JG.
The epidemiology and global burden of autism spectrum
disorders. Psychol Med 2015;45:601‑13.
4. Hodges H, Fealko C, Soares N. Autism spectrum disorder:
Definition, epidemiology, causes, and clinical evaluation. Transl
Pediatr 2020;9:S55‑65.
5. Mohammadi MR, Ahmadi N, Khaleghi A, Zarafshan H,
Mostafavi SA, Kamali K, et al. Prevalence of autism and its
comorbidities and the relationship with maternal psychopathology:
A national population‑based study. Arch Iran Med 2019;22:546‑53.
6. Matson JL, Kozlowski AM. The increasing prevalence of autism
spectrum disorders. Res Autism Spectr Disord 2011;5:418‑25.
7. Kirby AV, Williams KL, Watson LR, Sideris J, Bulluck J,
Baranek GT. Sensory features and family functioning in families of
children with autism and developmental disabilities: Longitudinal
associations. Am J Occup Ther 2019;73:7302205040.
8. Benevides TW, Lee J, Nwosu NA, Franks J. Understanding the
family impact of autism spectrum disorder in a racially and
ethnically diverse sample: Findings from the national survey of
children with special health care needs. Matern Child Health J
2019;23:951‑60.
9. Gentles SJ, Nicholas DB, Jack SM, McKibbon KA, Szatmari P.
Coming to understand the child has autism: A process illustrating
parents’ evolving readiness for engaging in care. Autism
2020;24:470‑83.
10. Jeoung B. Study of the relationships between the health condition,
caring in terms of health practice behavior on quality of life
of parents of children with developmental disabilities. J Exerc
Rehabil 2019;15:826‑31.
11. Mosadeghrad AM, Pourreza A, Akbarpour N. Economic burden
of autism spectrum disorders in Iran. Tehran Univ Med J
2019;76:665‑71.
12. RoggeN, JanssenJ. The economic costs of autism spectrum disorder:
A literature review. J Autism Dev Disord 2019;49:2873‑900.
13. Scott EK. Mother‑ready jobs: Employment that works for mothers
of children with disabilities. J Fam Issues 2018;39:2659‑84.
14. Renford NG, Arulappan J, Thomas KD, Karuppiah KM,
Chinnathambi K, Thangaswamy GC. Quality of life of caregivers
of children with autism spectrum disorder in Tamil Nadu, South
India. Int J Nutr Pharmacol Neurol Dis 2020;10:57‑64.
15. Hoseinnejad H, Chopaniyan F, Sarvi Moghanlo O, Rostami M,
Dadkhah A. Marital satisfaction and happiness in parents with
autistic and normal children. Iran Rehabil J 2020;18:49‑56.
16. McStay RL, Dissanayake C, Scheeren A, Koot HM, Begeer S.
Parenting stress and autism: The role of age, autism severity,
quality of life and problem behaviour of children and adolescents
with autism. Autism. 2014:18:502‑10.
17. Kuhlthau K, Payakachat N, Delahaye J, Hurson J, Pyne JM,
Kovacs E, et al. Quality of life for parents of children with autism
spectrum disorders. Res Autism Spectr Disord 2014;8:1339‑50.
18. Gau SS, Chou MC, Chiang HL, Lee JC, Wong CC, Chou WJ, et al.
Parental adjustment, marital relationship, and family function
in families of children with autism. Res Autism Spectr Disord
2012;6:263‑70.
19. Liu R, Dong H, Wang Y, Lu X, Li Y, Xun G, et al. Sleep problems
of children with autism may independently affect parental quality
of life. Child Psychiatry Hum Dev 2021;52:488‑99.
20. Mirzaie H, Jamshidian E, Hosseini SA. Routines in families of
children with Autism. Arch Rehabil 2018;19:184‑93.
21. Klukowski M, Wasilewska J, Lebensztejn D. Sleep and
gastrointestinal disturbances in autism spectrum disorder in
children. Dev Period Med 2015;19:157‑61.
22. Johnson CR, Smith T, DeMand A, Lecavalier L, Evans V,
Gurka M, et al. Exploring sleep quality of young children with
autism spectrum disorder and disruptive behaviors. Sleep Med
2018;44:61‑6.
23. Tait K, Fung F, Hu A, Sweller N, Wang W. Understanding Hong
Kong Chinese families’ experiences of an autism/ASD diagnosis.
J Autism Dev Disord 2016;46:1164‑83.
24. Theofilou P. Quality of life: Definition and measurement. Eur J
Psychol 2013;9:1841‑0413.
25. Keyvanara M, Khasti BY, Zadeh MR, Modaber F. Study of the
relationship between quality of life and socioeconomic status in
Isfahan at 2011. J Educ Health Promot 2015;4:92.
26. Kamali M, Ostadhashemi L, Khalvati M, Nourozi S, Nafei A.
Quality of life of the physically disabled: A systematic review.
Pajouhan Sci J 2013;12:27‑35.
27. Amiri Majd M, Hosseini SF, Jafari A. Comparing the quality of
life and marital intimacy among parents of children with Down
syndrome, parents of children with learning disabilities, and
parents of normal children. J Learn Disabil 2014;4:38‑55.
28. Khorramabadi R, Pouretemad H, Mazaheri A, Dehghani M,
Khosroshahi S. The effctiveness of the ‘little bird program in
the general health of mothers with autistic children. J Fam Res
2011;7:325‑41.
29. Özgür BG, Aksu H, Eser E. Factors affecting quality of life of
caregivers of children diagnosed with autism spectrum disorder.
Indian J Psychiatry 2018;60:278‑85.
30. Schlebusch L, Dada S, Samuels AE. Family quality of life of South
African families raising children with autism spectrum disorder.
J Autism Dev Disord 2017;47:1966‑77.
31. Soltanifar A, Akbarzadeh F, Moharreri F, Soltanifar A, Ebrahimi A,
Mokhber N, et al. Comparison of parental stress among mothers
and fathers of children with autistic spectrum disorder in Iran.
ran J Nurs Midwifery Res 2015;20:93‑98.
32. Riany YE, Cuskelly M, Meredith P. Parenting style and parent–
child relationship: A comparative study of Indonesian parents
of children with and without Autism Spectrum Disorder (ASD).
J Child Fam Stud 2017;26:3559‑71.
33. Bagatell NJ, Cram M, Alvarez CG, Loehle L. Routines of families
with adolescents with autistic disorders: A comparison study.
Can J Occup Ther 2014;81:62‑7.
34. Boyd BA, McCarty CH, Sethi C. Families of children with
autism: A synthesis of family routines literature. J. Occup. Sci
2014;21:322‑33.
35. Marquenie K, Rodger S, Mangohig K, Cronin A. Dinnertime and
bedtime routines and rituals in families with a young child with
an autism spectrum disorder. Aust Occup Ther J 2011;58:145‑54.
36. Parsons D, Cordier R, Lee H, Falkmer T, Vaz S. Stress, coping, and
quality of life in families with a child with ASD living regionally.
J Child Fam Stud 2020;29:546‑58.
37. Schroder CM, Malow BA, Maras A, Melmed RD, Findling RL,
Breddy J, et al. Pediatric prolonged‑release melatonin for sleep
in children with autism spectrum disorder: Impact on child
behavior and caregiver’s quality of life. J Autism Dev Disord
2019;49:3218‑30.
38. Lawson LP, Richdale AL, Haschek A, Flower RL, Vartuli J,
Arnold SR, et al. Cross‑sectional and longitudinal predictors
of quality of life in autistic individuals from adolescence to
adulthood: The role of mental health and sleep quality. Autism
2020;24:954‑67.
39. Pastor‑Cerezuela G, Fernández‑Andrés MI, Tárraga‑Mínguez R,
Navarro‑Peña JM. Parental stress and ASD: Relationship with autism symptom severity, IQ, and resilience. Focus Autism Other
Dev Disabl 2016;31:300‑11.
40. Fletcher PC, Markoulakis R, Bryden PJ. The costs of caring for a
child with an autism spectrum disorder. Issues Compr Pediatr
Nurs 2012;35:45‑69.
41. Ekmann A, Petersen I, Mänty M, Christensen K, Avlund K.
Fatigue, general health, and ischemic heart disease in older adults.
J Gerontol A Biol Sci Med Sci 2013;68:279‑85.
42. Safar Hamidi E, Bashirgonbadi S, Hosseinian S. Relationship of
psychological well‑being and quality of life with spiritual health
in mothers with mentally disabled children. J Pizhuhish Salamat
2019;5:37‑49.
43. Farshad MR, Amirfakhraei A, Taghadosinia R, Askari M.
Prediction of quality of life based on spiritual intelligence and
resiliency in mothers of children with behavioral problems. Health
Spiritual Med Ethics 2020;7:56‑64.
44. AsadiR. Studying the influence of family members’ depression on
the life quality of the disabled with an emphasis on their spiritual
and mental health. J Stud Soc Sci Humanit 2016;2:138‑42.
45. Hodge DR, Sun F. Positive feelings of caregiving among Latino
Alzheimer’s family caregivers: Understanding the role of
spirituality. Aging Ment Health 2012;16:689‑98.
46. DePape AM, Lindsay S. Parents’ experiences of caring for a child
with autism spectrum disorder. Qual Health Res 2015;25:569‑83.
47. Saunders BS, Tilford JM, Fussell JJ, Schulz EG, Casey PH, Kuo DZ.
Financial and employment impact of intellectual disability on
families of children with autism. Fam Syst Health 2015;33:36‑45.
48. Kapp S, Santamaria N. The financial and quality‐of‐life cost to
patients living with a chronic wound in the community. Int
Wound J 2017;14:1108‑19.
49. Zhai Z, Zhou X, Zhang S, Xie W, Wan J, Kuang T, et al. The impact
and financial burden of pulmonary arterial hypertension on
patients and caregivers: Results from a national survey. Medicine
2017;96:e6783.
50. Shepherd CA, Waddell C. A qualitative study of autism policy in
Canada: Seeking consensus on children’s services. J Autism Dev
Disord 2015;45:3550‑64.
51. Mohammadi F, Rakhshan M, Molazem Z, Zareh N. Parental
empowerment of the parents of children with autism: Aqualitative
study. Sadra Med J 2018;6:261‑74.
52. Kuru N, Piyal B. Perceived social support and quality of life of
parents of children with Autism. Niger J Clin Pract 2018;21:1182‑9.
)