Quality of Life among Mothers of High Functioning Autism Spectrum Disorder (HFASD)Adolescents
Abstract
:1. Introduction
2. Methods
2.1. Study Design
2.2. Participants
2.3. Settings
2.4. Procedure
2.5. Transcription and Data Analysis
3. Results
- Informant 1: A 50 year old executive working at a semi-government agency and a mother to a 13 year old boy with HFASD.
- Informant 2: A 41 year old housewife and a mother to a 14 year old boy with HFASD.
- Informant 3: A 44 year old working in a semi-government agency. A mother to 19 years old boy with HFASD.
- Informant 4: A 55 year old housewife and a mother to a 21 year old boy with HFASD.
- Informant 5: A 45 year old lecturer in a local university and a mother to an 18 year old boy with HFASD.
- Informant 6: A 50 year old teacher and a mother to a 20 year old boy with HFASD.
- Informant 7: A 54 year old teacher and a mother to a 21 year old boy with HFASD.
3.1. Physical and Emotional Well-Being
“…Thank God… Luckily my husband and I are sport-person. Like my husband, he loves to play basketball… Every Monday and Wednesday I do HIIT, I join everything… Sometimes when we go for hiking, we bring him together… Put the picnic mat and he will play with his gadget…”Informant 1.
“…Usually, my husband and he ride a bicycle together around this area… But since he scared of Covid… He stops ride his bicycle and no longer play football together with his friends… He is very restricted to the order…”Informant 2.
“…I always enjoy doing Zumba with my friends… Usually I went for exercise after I chauffeur my kids to school… That is my free time, and I will make sure I have time for it…”Informant 4.
“…If he goes out alone, we will worry about other things as well… Special kids like him is such a likeable. But people tend to take advantages on him…”Informant 6.
“… He used to take a ride using train by his own… He went to the mall by himself… We never thought that he could be this brave… We are worries if he cannot go back home but surprisingly, he can remember his route to home… But we are still anxious about his future… I am scared if he cannot be independent enough… So, we ask our daughter to promise us to take care of her brother when we are gone…”Informant 3.
“.. I just feel sad… Thinking about his future… What if I am gone too soon…? Who will take care of him like I do…?”Informant 4.
“.. It just that we are worried about him… He started to watch some “adult” video… We are worried if he applies what he watched in reality… He used to show some “adult” pictures to his friends…”Informant 7.
3.2. Interpersonal Relationship
3.2.1. Social Support
“…I always ignore what they say about my kid, and I always do not make friends with them. It’s better for me to keep a small group of friends who always support me”Informant 2.
“…Many of my friends can’t believe that Dani is special because he looks normal. They are supportive. They are my officemates”Informant 1.
3.2.2. Family Support
“Not everyone can understand us, especially my kid, with this conditions. What I can do is to make sure that my kid had a support from me, and my husband is always here to support me”Informant 4.
“I am blessed because my family is understand Dani’s conditions”Informant 1.
“…I think all my family are very supportive… But when it comes to medication for my son, they are very judgmental… The doctor prescribed him with Ritalin… So all my siblings ask me to stop giving him the drugs…”Informant 3.
“…I always share everything to my sibling… It makes me feel some kind of relief when I can share to them… But I do not share with my parents… I do not want them to feel worry…”Informant 2.
3.3. Material Well-Being
3.3.1. Providing Accommodation
“…We provide him with all the luxury gameplay… We don’t mind how much we have to spend on his interest… As long as he’s happy then I’m happy… We don’t want him to play in an arcade, so we make his room like the arcade…”Informant 4.
3.3.2. Access to Services
“…We don’t really mind how much do we have to invest on him… We’ve registered a class for him like a culinary class under Mental Health Foundation… As long as he can learn something…Informant 3.
“…I took him to Altuz Academy for his therapy… Even though it is expensive, but I don’t really mind… I’ve my own income and my husband is very supportive for each therapy that my kid are joining…”Informant 1.
“I send my kid to private centre for his therapy… I don’t mind if I have to pay and travel to Ipoh because I can join the therapy and I can learn something…”Informant 6.
3.4. Environment Well-Being
3.4.1. Safety
“I don’t go anywhere and don’t give him to play outside. He understands that he has to keep safe. ”Informant 2.
“I am very protective to him. I won’t let him go outside alone even in front of our home. But the children with Autism is lack of social skills, so, I don’t have to worry much because I know that he always at home”Informant 1.
“I let him exercise around my home compound. He will just jog around. But I don’t let him go to the park. That is worrisome. ”Informant 4.
“I will make sure my neighbor to look after him when I go to school… Just to ensure his safety. ”Informant 6.
3.4.2. Stigma
“I used to told my neighbors that my child is special kid… But they ignored… They asked their kids not to play with my child…”Informant 2.
“He used to go to normal kindergarten… But the teacher asked me to stop sending my child to the kindergarten… Because he is abnormal, and he can’t socialize…”Informant 6.
“The teacher from the school terminate my child from taking any exam and asked me to change his school… Because they have to maintain the school’s performance and my child might jeopardize the school’s ranking…”Informant 5.
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
- Association, American Psychiatric. Diagnostic and Statistical Manual of Mental Disorders: Dsm-5; American Psychiatric Association: Arlington, VA, USA, 2013. [Google Scholar]
- Fauziyah, N.; Budayasa, I.K.; Juniati, D. Cognition Processes of Student with Low Functioning Autism in Solving Mathe-matical Problem. J. Phys. 2020, 1469, 012167. [Google Scholar]
- Alvares, G.A.; Bebbington, K.; Cleary, D.; Evans, K.; Glasson, E.J.; Maybery, M.; Pillar, S.; Uljarević, M.; Varcin, K.; Wray, J.; et al. The misnomer of ‘high functioning autism’: Intelligence is an imprecise predictor of functional abilities at diagnosis. Autism 2019, 24, 221–232. [Google Scholar] [CrossRef] [PubMed]
- Usher, L.V.; Burrows, C.A.; Schwartz, C.B.; Henderson, H.A. Social competence with an unfamiliar peer in children and adolescents with high functioning autism: Measurement and individual differences. Res. Autism Spectr. Disord. 2015, 17, 25–39. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Ayres, M.; Parr, J.R.; Rodgers, J.; Mason, D.; Avery, L.; Flynn, D. A systematic review of quality of life of adults on the autism spectrum. Autism 2017, 22, 774–783. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Mason, D.; McConachie, H.; Garland, D.; Petrou, A.; Rodgers, J.; Parr, J.R. Predictors of quality of life for autistic adults. Autism Res. 2018, 11, 1138–1147. [Google Scholar] [CrossRef]
- Kamp-Becker, I.; Schröder, J.; Remschmidt, H.; Bachmann, C.J. Health-related quality of life in adolescents and young adults with high functioning autism-spectrum disorder. GMS Psychosoc. Med. 2010, 7, Doc03. [Google Scholar] [CrossRef]
- Lin, L.-Y. Quality of Life of Taiwanese Adults with Autism Spectrum Disorder. PLoS ONE 2014, 9, e109567. [Google Scholar] [CrossRef]
- Gurbuz, E.; Hanley, M.; Riby, D.M. University Students with Autism: The Social and Academic Experiences of University in the UK. J. Autism Dev. Disord. 2019, 49, 617–631. [Google Scholar] [CrossRef]
- Hayes, S.A.; Shelley, L.W. The Impact of Parenting Stress: A Meta-Analysis of Studies Comparing the Ex-perience of Parenting Stress in Parents of Children with and without Autism Spectrum Disorder. J. Autism Dev. Disord. 2013, 43, 629–642. [Google Scholar] [CrossRef]
- Dieleman, L.M.; Moyson, T.; De Pauw, S.S.; Prinzie, P.; Soenens, B. Parents’ Need-related Experiences and Behaviors When Raising a Child With Autism Spectrum Disorder. J. Pediatr. Nurs. 2018, 42, e26–e37. [Google Scholar] [CrossRef]
- Marsack-Topolewski, C.N.; Graves, J.M. “I Worry About His Future!” Challenges to Future Planning for Adult Children with ASD. J. Fam. Soc. Work. 2020, 23, 71–85. [Google Scholar] [CrossRef]
- Ripamonti, L. Disability, Diversity, and Autism: Philosophical Perspectives on Health. New Bioeth. 2016, 22, 56–70. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Lambe, S.; Russell, A.; Butler, C.; Fletcher, S.; Ashwin, C.; Brosnan, M. Autism and the transition to university from the student perspective. Autism 2019, 23, 1531–1541. [Google Scholar] [CrossRef] [PubMed]
- Coleman, D.M.; James, B.A. Survey of Vocational Experiences of Adults with Autism Spectrum Disorders, and Recommendations on Improving Their Employment. J. Vocat. Rehabil. 2018, 49, 67–78. [Google Scholar] [CrossRef] [Green Version]
- Scarpa, A.; Reyes, N.M. Improving Emotion Regulation with Cbt in Young Children with High Functioning Au-tism Spectrum Disorders: A Pilot Study. Behav. Cogn. Psychother. 2011, 39, 495–500. [Google Scholar] [CrossRef] [Green Version]
- Luis Miguel, R.G.; Ramírez Navarrro, J.M. The Impact of Quality of Life on the Health of Older People from a Multidimensional Perspective. J. Aging Res. 2018, 2018, 4086294. [Google Scholar]
- Franke, K.B.; Hills, K.; Huebner, E.S.; Flory, K. Life Satisfaction in Adolescents with Autism Spectrum Disorder. J. Autism Dev. Disord. 2019, 49, 1205–1218. [Google Scholar] [CrossRef]
- World Health Organization. Whoqol-Bref: Introduction, Administration, Scoring and Generic Version of the Assessment: Field Trial Version, December 1996; World Health Organization: Geneva, Switzerland, 1996. [Google Scholar]
- Berntsson, L.T.; Kohler, L. Quality of Life among Children Aged 2–17 Years in the Five Nordic Countries: Comparison between 1984 and 1996. Eur. J. Public Health 2001, 11, 437–445. [Google Scholar] [CrossRef] [Green Version]
- Eapen, V.; Črnčec, R.; Walter, A.; Tay, K.P. Conceptualisation and Development of a Quality of Life Measure for Parents of Children with Autism Spectrum Disorder. Autism Res. Treat. 2014, 2014, 160783. [Google Scholar] [CrossRef] [Green Version]
- Radley, K.C.; Ford, W.B.; Battaglia, A.A.; McHugh, M.B. The Effects of a Social Skills Training Package on Social Engagement of Children With Autism Spectrum Disorders in a Generalized Recess Setting. Focus Autism Other Dev. Disabil. 2014, 29, 216–229. [Google Scholar] [CrossRef]
- Ging, W.G.; Normah, C.D.; Ahmad, M. The Development and Feasibility Evaluation of a Module in Improving Functioning of Children with Autism Spectrum Disorder (ASD). Malays. J. Public Health Med. 2018, 1, 146–155. [Google Scholar]
- Roux, A.; Shattuck, P.T.; Rast, J.E.; Rava, J.A.; Edwards, A.; Wei, X.; McCracken, M.; Yu, J.W. Characteristics of Two-Year College Students on the Autism Spectrum and Their Support Services Experiences. Autism Res. Treat. 2015, 2015, 391693. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Pecor, K.; Barbayannis, G.; Yang, M.; Johnson, J.; Materasso, S.; Borda, M.; Garcia, D.; Garla, V.; Ming, X. Quality of Life Changes during the COVID-19 Pandemic for Caregivers of Children with ADHD and/or ASD. Int. J. Environ. Res. Public Health 2021, 18, 3667. [Google Scholar] [CrossRef] [PubMed]
- Egilson, S.T.; Ólafsdóttir, L.B.; Leósdóttir, T.; Saemundsen, E. Quality of life of high-functioning children and youth with autism spectrum disorder and typically developing peers: Self- and proxy-reports. Autism 2017, 21, 133–141. [Google Scholar] [CrossRef]
- Dijkhuis, R.R.; Ziermans, T.; van Rijn, S.; Staal, W.G.; Swaab, H. Self-regulation and quality of life in high-functioning young adults with autism. Autism 2016, 21, 896–906. [Google Scholar] [CrossRef] [Green Version]
- De Vries, M.; Geurts, H. Influence of Autism Traits and Executive Functioning on Quality of Life in Children with an Autism Spectrum Disorder. J. Autism Dev. Disord. 2015, 45, 2734–2743. [Google Scholar] [CrossRef] [Green Version]
- World Health Organization. Programme on Mental Health; World Health Organization: Geneva, Switzerland, 1998. [Google Scholar]
- Chiang, H.-M.; Wineman, I. Factors associated with quality of life in individuals with autism spectrum disorders: A review of literature. Res. Autism Spectr. Disord. 2014, 8, 974–986. [Google Scholar] [CrossRef]
- Barneveld, P.S.; Swaab, H.; Fagel, S.; van Engeland, H.; de Sonneville, L. Quality of life: A case-controlled long-term follow-up study, comparing young high-functioning adults with autism spectrum disorders with adults with other psychiatric disorders diagnosed in childhood. Compr. Psychiatry 2014, 55, 302–310. [Google Scholar] [CrossRef]
- Pisula, E.; Porębowicz-Dörsmann, A. Family functioning, parenting stress and quality of life in mothers and fathers of Polish children with high functioning autism or Asperger syndrome. PLoS ONE 2017, 12, e0186536. [Google Scholar] [CrossRef]
- Hsiao, Y.-J. Autism Spectrum Disorders: Family Demographics, Parental Stress, and Family Quality of Life. J. Policy Pract. Intellect. Disabil. 2018, 15, 70–79. [Google Scholar] [CrossRef]
- Lee, J.X.; Malaysia, U.K. Parenting Stress among Malaysian Parents of Children with Autism Spectrum Disorder (ASD). Med. Health 2017, 12, 42–55. [Google Scholar] [CrossRef]
- Lebni, J.Y.; Ziapour, A.; Khosravi, B.; Kandi, Z.R.K. Lived experience of mothers of children with disabilities: A qualitative study of Iran. J. Public Health 2021, 29, 1173–1179. [Google Scholar] [CrossRef]
- Masulani-Mwale, C.; Kauye, F.; Gladstone, M.; Mathanga, D. Prevalence of psychological distress among parents of children with intellectual disabilities in Malawi. BMC Psychiatry 2018, 18, 146. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Lu, M.-H.; Wang, G.-H.; Lei, H.; Shi, M.-L.; Zhu, R.; Jiang, F. Social Support as Mediator and Mod-erator of the Relationship between Parenting Stress and Life Satisfaction among the Chinese Parents of Children with ASD. J. Autism Dev. Disord. 2018, 48, 1181–1188. [Google Scholar] [CrossRef] [PubMed]
- Pepperell, T.A.; Paynter, J.; Gilmore, L. Social support and coping strategies of parents raising a child with autism spectrum disorder. Early Child Dev. Care 2016, 188, 1392–1404. [Google Scholar] [CrossRef]
- McIntyre, L.L.; Brown, M. Examining the utilisation and usefulness of social support for mothers with young children with autism spectrum disorder. J. Intellect. Dev. Disabil. 2018, 43, 93–101. [Google Scholar] [CrossRef]
- Goedeke, S.; Shepherd, D.; Landon, J.; Taylor, S. How Perceived Support Relates to Child Autism Symp-toms and Care-Related Stress in Parents Caring for a Child with Autism. Res. Autism Spectr. Disord. 2019, 60, 36–47. [Google Scholar] [CrossRef]
- Schlebusch, L.; Dada, S.; Samuels, A. Family Quality of Life of South African Families Raising Children with Autism Spectrum Disorder. J. Autism Dev. Disord. 2017, 47, 1966–1977. [Google Scholar] [CrossRef]
- Hong, M.; Lee, S.M.; Park, S.; Yoon, S.-J.; Kim, Y.-E.; Oh, I.-H. Prevalence and Economic Burden of Autism Spectrum Disorder in South Korea Using National Health Insurance Data from 2008 to 2015. J. Autism Dev. Disord. 2020, 50, 333–339. [Google Scholar] [CrossRef]
- Fong, V.C.; Gardiner, E.; Iarocci, G. Can a combination of mental health services and ADL therapies improve quality of life in families of children with autism spectrum disorder? Qual. Life Res. 2020, 29, 2161–2170. [Google Scholar] [CrossRef]
- Zakaria, S.M.; Tauhaid, N.S.M. Cabaran Membesarkan Anak-Anak Autisme Daripada Perspektif Ibu (the Challenges of Nurturing Autistic Children from the Mother’s Perspective). J. Psikol. Malays. 2018, 32, 58–71. [Google Scholar]
- Chu, S.Y.; Normal, S.N.S.A.B.M.; McConnell, G.E.; Tan, J.S.; Singh, S.K.D.J. Challenges faced by parents of children with autism spectrum disorder in Malaysia. Speech Lang. Hear. 2018, 23, 221–231. [Google Scholar] [CrossRef]
- AlNemary, F.M.; Aldhalaan, H.M.; Simon-Cereijido, G.; AlNemary, F.M. Services for children with autism in the Kingdom of Saudi Arabia. Autism 2017, 21, 592–602. [Google Scholar] [CrossRef]
- Mello, M.P.; Goldman, S.E.; Urbano, R.C.; Hodapp, R.M. Services for Children with Autism Spec-trum Disorder: Comparing Rural and Non-Rural Communities. Educ. Train. Autism Dev. Disabil. 2016, 51, 355–365. [Google Scholar]
- Epstein, A.; Whitehouse, A.; Williams, K.; Murphy, N.; Leonard, H.; Davis, E.; Reddihough, D.; Downs, J. Parent-observed thematic data on quality of life in children with autism spectrum disorder. Autism 2019, 23, 71–80. [Google Scholar] [CrossRef] [PubMed]
- Kinnear, S.H.; Link, B.G.; Ballan, M.S.; Fischbach, R.L. Understanding the Experience of Stigma for Parents of Children with Autism Spectrum Disorder and the Role Stigma Plays in Families’ Lives. J. Autism Dev. Disord. 2016, 46, 942–953. [Google Scholar] [CrossRef] [PubMed]
- Laili, N.B.; Abdullah, W.A.W.; Toran, H.; Amin, A.S.; Alias, R. Challenges and Support for Parents of Children With Autism Spectrum Disorder at Work. Int. J. Acad. Res. Bus. Soc. Sci. 2021, 11, 655–669. [Google Scholar] [CrossRef]
- Chu, S.Y.; Park, H.; Lee, J.; Shaharuddin, K.K.B.; Gan, C.H. Self-stigma and its associations with stress and quality of life among Malaysian parents of children with autism. Child Care Health Dev. 2020, 46, 485–494. [Google Scholar] [CrossRef]
Participants’ Names | Age | Employment Status | Health Issues | Adolescences’ Gender (Age) |
---|---|---|---|---|
Informant 1 | 50 | Working | No | Boy (13 years) |
Informant 2 | 41 | Housewife | No | Boy (14 years) |
Informant 3 | 44 | Working | No | Boy (19 years) |
Informant 4 | 55 | Housewife | No | Boy (21 years) |
Informant 5 | 45 | Working | No | Boy (18 years) |
Informant 6 | 50 | Housewife | No | Boy (20 years) |
Informant 7 | 54 | Working | No | Boy (21 years) |
No | Question |
---|---|
1. | Do you feel you are living a quality life? What are the quality things in your life? |
2. | Tell us about your current state of health? Are you satisfied? How is your self-acceptance of your health? |
3. | As we know, parents here are guardians to HFASD children. So, how do you know your child has HFASD? When did you realize there was such disorder? |
4. | Your child has been diagnosed, so how does this treatment process take place? |
5. | How is your acceptance of your child’s problems? What are your expectations for your child? |
6. | How is the acceptance of a partner? Another child? Family? Friends? |
7. | Tell us about the daily routine of your life? How to manage your daily activities? |
8. | Who will help you manage family matters? What about your satisfaction with the help provided |
9. | Are you satisfied with your sleep? Have you ever had trouble sleeping? If so, what are the steps to overcome sleep problems? What are the things that keep you from sleeping? |
10. | What about your ability to perform the activities of your daily life? Managing children and family? |
11. | Are you working? What about your ability to work? How do you divide your time between work and family management? |
12. | Have you ever had negative feelings, such as sadness, frustration, anxiety or felt depressed? What causes these feelings? What are you going to do? |
13. | What about opportunities for leisure activities? Do you still have time for recreation? |
14. | Are you satisfied with the support you get from your friends? What support is provided? |
15. | Are you satisfied with the conditions of your residence? Where do you live? What about the neighbors? Safety in the living environment? |
Publisher’s Note: MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations. |
© 2022 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
Mohamad Aun, N.S.; Zakaria, S.M.; Ahmad Badayai, A.R.; Idris, I.B.; Mohd Daud, T.I.; Mohd Fazree, S.D. Quality of Life among Mothers of High Functioning Autism Spectrum Disorder (HFASD)Adolescents. Int. J. Environ. Res. Public Health 2022, 19, 6663. https://doi.org/10.3390/ijerph19116663
Mohamad Aun NS, Zakaria SM, Ahmad Badayai AR, Idris IB, Mohd Daud TI, Mohd Fazree SD. Quality of Life among Mothers of High Functioning Autism Spectrum Disorder (HFASD)Adolescents. International Journal of Environmental Research and Public Health. 2022; 19(11):6663. https://doi.org/10.3390/ijerph19116663
Chicago/Turabian StyleMohamad Aun, Nur Saadah, Siti Marziah Zakaria, Abdul Rahman Ahmad Badayai, Idayu Badilla Idris, Tuti Iryani Mohd Daud, and Shima Dyana Mohd Fazree. 2022. "Quality of Life among Mothers of High Functioning Autism Spectrum Disorder (HFASD)Adolescents" International Journal of Environmental Research and Public Health 19, no. 11: 6663. https://doi.org/10.3390/ijerph19116663