Abstract
Background: Studies have shown that most parents of children with autism spectrum disorder (ASD) face more stress and have a poorer quality of life (QoL) than other parents. Nonetheless, there are still some parents of children with ASD who are able to maintain or even improve their QoL. This study is aimed to explore the relationship between SoC and WHOQoL among parents of children with ASD.
Method: A total of 96 parents of children with ASD were invited to participate using a purposive sampling method.
Results: The results suggested that participants in the high SoC group had better QoL in the four domains than those in the low SoC group. More importantly, not all types of SoC were relevant to QoL. Comprehensibility was relevant to all the four QoL domains and manageability was relevant to physical and psychological health, while meaningfulness was not relevant to any of the QoL domains.
Conclusions: NGOs may improve the QoL of these parents by providing trainings to improve their SOC, especially in comprehensibility and manageability.
Acknowledgments
This study is sponsored by the Fundamental Research Grant Scheme (FRGS) of the Malaysia Ministry of Higher Education (FRGS/1/2012/SS02/UTAR/02/01). The authors would like to thank Mr. Koh Guan Hoe, Ms. Annie Liew Wei Fun, Ms. Chan Ruenn Peng, and Ms. Khor Soo Nee for allowing to access the group of parents of children with ASD and recruiting them as our participants.
Conflict of interest statement
Authors’ conflict of interest disclosure: The authors stated that there are no conflicts of interest regarding the publication of this article. Research funding played no role in the study design; in the collection, analysis, and interpretation of data; in the writing of the report; or in the decision to submit the report for publication.
Research funding: None declared.
Employment or leadership: None declared.
Honorarium: None declared.
References
1. Jobe LE, White WS. Loneliness, social relationships, and a broader autism phenotype in college students. Pers Indiv Differ 2007;42:1479–89.10.1016/j.paid.2006.10.021Suche in Google Scholar
2. Elder HJ, D’alessandro T. Supporting families of children with autism spectrum disorders: questions parents ask and what nurses need to know. Pediatr Nurs 2009;35:240–5.Suche in Google Scholar
3. Berg A, Plioplys S. Epilepsy and autism: is there a special relationship? Epilepsy Behav 2012;23:193–8.10.1016/j.yebeh.2012.01.015Suche in Google Scholar
4. Volker MA, Lopata C. Autism: a review of biological bases, assessment, and intervention. School Psychol Quart 2008;23:258.10.1037/1045-3830.23.2.258Suche in Google Scholar
5. Bartley JJ. An update on autism: science, gender, and the law. Gender Med 2006;3:73–8.10.1016/S1550-8579(06)80197-XSuche in Google Scholar
6. Giarelli E, Wiggins LD, Rice CE, Levy SE, Kirby RS, Pinto-Martin J, et al. Sex differences in the evaluation and diagnosis of autism spectrum disorders among children. Disabil Health J 2010;3:107–16.10.1016/j.dhjo.2009.07.001Suche in Google Scholar
7. Solomon AH, Chung B. Understanding autism: how family therapists can support parents of children with autism spectrum disorders. Fam Process 2012;51:250–64.10.1111/j.1545-5300.2012.01399.xSuche in Google Scholar
8. Levy SE, Mandell DS, Schultz RT. Autism. Lancet 2009;374:1627–38.10.1016/S0140-6736(09)61376-3Suche in Google Scholar
9. Urgent need for autism school. The Star Online [Internet]. 2012 Oct 26. Available from: http://thestar.com.my/metro/story.asp?sec=southneast&file=/2012/10/26/southneast/12220848.Suche in Google Scholar
10. Malaysia Psychiatric Association. Money and distance letting down children with autism [Internet]. 2010. Available from: http://www.psychiatry-malaysia.org/article.php?aid=1249.Suche in Google Scholar
11. Meadan H, Halle JW, Ebata AT. Families with children who have autism spectrum disorders: stress and support. Except Child 2010;77:7–36.10.1177/001440291007700101Suche in Google Scholar
12. Lee LC, Harrington RA, Louie BB, Newschaffer CJ. Children with autism: quality of life and parental concerns. J Autism Dev Disord 2008;38:1147–60.10.1007/s10803-007-0491-0Suche in Google Scholar
13. Collins EJ, Hogan TP, Desai H. Measurement of therapeutic response in schizophrenia: a critical survey. Schizophr Res 1991;5:249–53.10.1016/0920-9964(91)90083-4Suche in Google Scholar
14. Hallin P, Sullivan M, Kreuter M. Spinal cord injury and quality of life measures: a review of instrument psychometric quality. Spinal Cord 2000;38:509–23.10.1038/sj.sc.3101054Suche in Google Scholar
15. Hsiung P-C, Fang C-T, Wu C-H, Sheng W-H, Chen S-C, Wang J-D, et al. Validation of the WHOQOL-HIV BREF among HIV-infected patients in Taiwan. AIDS Care 2011;23:1035–42.10.1080/09540121.2010.543881Suche in Google Scholar
16. Power M, Kuyken W, Orley J, Hermann H, Shofield H, Murphy B, et al. The World Health Organisation Quality of Life Assessment (WHOQOL)-Development and general psychometric properties. Soc Sci Med 1998;46:1569–85.10.1016/S0277-9536(98)00009-4Suche in Google Scholar
17. World Health Organization. Measuring quality of life: the world health organization quality of life instruments. 1997. Available from: http://www.who.int/mental_health/media/68.pdf.Suche in Google Scholar
18. Seltzer MM, Shattuck P, Abbeduto L, Greenberg JS. Trajectory of development in adolescents and adults with autism. Ment Retard Dev D R 2004;10:234–47.10.1002/mrdd.20038Suche in Google Scholar PubMed
19. De Bildt A, Sytema S, Kraijer D, Sparrow S, Minderaa R. Adaptive functioning and behaviour problems in relation to level of education in children and adolescents with intellectual disability. J Intellectual Disabil Res 2005;49:672–81.10.1111/j.1365-2788.2005.00711.xSuche in Google Scholar PubMed
20. Estes A, Munson J, Dawson G, Koehler E, Zhou X-H, Abbott R. Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism 2009;13:375–87.10.1177/1362361309105658Suche in Google Scholar PubMed PubMed Central
21. Myers BJ, Mackintosh VH, Goin-Kochel RP. “My greatest joy and my greatest heartache”: Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Res Autism Spect Dis 2009;3:670–84.10.1016/j.rasd.2009.01.004Suche in Google Scholar
22. Sipos R, Predescu E, Muresan G, Iftene F. The evaluation of family quality of life of children with autism spectrum disorder and attention deficit hyperactive disorder. Appl Med Inform 2012;30:1–8.Suche in Google Scholar
23. Allik H, Larsson JO, Smedje H. Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism. Health Qual Life Outcomes 2006;4:1–8.10.1186/1477-7525-4-1Suche in Google Scholar PubMed PubMed Central
24. Brereton AV, Tonge BJ, Einfeld SL. Psychopathology in children and adolescents with autism compared to young people with intellectual disability. J Autism Dev Disord 2006;36:863–70.10.1007/s10803-006-0125-ySuche in Google Scholar PubMed
25. Meirsschaut M, Roeyers H, Warreyn P. Parenting in families with a child with autism spectrum disorder and a typically developing child: mothers’ experiences and cognitions. Res Autism Spectr Disord 2010;4:661–9.10.1016/j.rasd.2010.01.002Suche in Google Scholar
26. Kohler FW. Examining the services received by young children with autism and their families a survey of parent responses. Focus Autism Other Dev Disabl 1999;14:150–8.10.1177/108835769901400304Suche in Google Scholar
27. Xiong N, Yang L, Yu Y, Hou J, Li J, Li Y, et al. Investigation of raising burden of children with autism, physical disability and mental disability in China. Res Dev Disabil 2011;32:306–11.10.1016/j.ridd.2010.10.003Suche in Google Scholar PubMed
28. Fox L, Vaughn BJ, Dunlap G, Wyatte ML. “We can’t expect other people to understand”: family perspectives on problem behavior. Except Child 2002;68:437–50.10.1177/001440290206800402Suche in Google Scholar
29. DeGrace BW. The everyday occupation of families with children with autism. Am J Occup Ther 2004;58:543–50.10.5014/ajot.58.5.543Suche in Google Scholar PubMed
30. Carter AS, Martínez-Pedraza F de L, Gray SA. Stability and individual change in depressive symptoms among mothers raising young children with ASD: maternal and child correlates. J Clin Psychol 2009;65:1270–80.10.1002/jclp.20634Suche in Google Scholar PubMed
31. Wong FK, Poon A. Cognitive behavioural group treatment for Chinese parents with children with developmental disabilities in Melbourne, Australia: an efficacy study. Aust NZ J Psychiat 2010;44:742–9.10.3109/00048671003769769Suche in Google Scholar PubMed
32. Gau SS, Chou M-C, Chiang H-L, Lee J-C, Wong C-C, Chou W-J, et al. Parental adjustment, marital relationship, and family function in families of children with autism. Res Autism Spectr Disord 2012;6:263–70.10.1016/j.rasd.2011.05.007Suche in Google Scholar
33. Hartley SL, Barker ET, Seltzer MM, Floyd F, Greenberg J, Orsmond G, et al. The relative risk and timing of divorce in families of children with an autism spectrum disorder. J Fam Psychol 2010;24:449–57.10.1037/a0019847Suche in Google Scholar PubMed PubMed Central
34. Green SE. “We’re tired, not sad”: benefits and burdens of mothering a child with a disability. Soc Sci Med 2007;64: 150–63.10.1016/j.socscimed.2006.08.025Suche in Google Scholar PubMed
35. Olsson MB, Hwang CP. Sense of coherence in parents of children with different developmental disabilities. J Intellect Disabil Res 2002;46:548–59.10.1046/j.1365-2788.2002.00414.xSuche in Google Scholar PubMed
36. Lazarus RS. Stress and emotion: a new synthesis. New York: Springer Publishing Company, 1999.Suche in Google Scholar
37. Antonovsky A. Unraveling the mystery of health-how people manage stress. San Francisco: Jossey-Bass, 1987.Suche in Google Scholar
38. Antonovsky A. The structure and properties of the sense of coherence scale. Soc Sci Med 1993;36:725–33.10.1016/0277-9536(93)90033-ZSuche in Google Scholar
39. Pozo P, Sarriá E, Brioso Á. Psychological adaptation in parents of children with autism spectrum disorders. J Pediatr Psychol 2001;26:225–35.Suche in Google Scholar
40. Oelofsen N, Richardson P. Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability. J Intellect Dev Disabil 2006;31:1–12.10.1080/13668250500349367Suche in Google Scholar PubMed
41. Beresford B. Coping with the care of a severely disabled child. Health Soc Care Comm 1996;4:30–40.10.1111/j.1365-2524.1996.tb00045.xSuche in Google Scholar
42. Wallander JL, Venters TL. Perceived role restriction and adjustment of mothers of children with chronic physical disability. J Pediatr Psychol 1995;20:619–32.10.1093/jpepsy/20.5.619Suche in Google Scholar PubMed
43. Feldt T, Metsäpelto R-L, Kinnunen U, Pulkkinen L. Sense of coherence and five-factor approach to personality. Eur Psychol 2007;12:165–72.10.1027/1016-9040.12.3.165Suche in Google Scholar
44. Pisula E, Kossakowska Z. Sense of coherence and coping with stress among mothers and fathers of children with autism. J Autism Dev Disord 2010;40:1485–94.10.1007/s10803-010-1001-3Suche in Google Scholar PubMed
45. Eriksson M, Lindström B. Validity of Antonovsky’s sense of coherence scale: a systematic review. J Epidemiol Commun H 2005;59:460–6.10.1136/jech.2003.018085Suche in Google Scholar PubMed PubMed Central
46. Suominen S, Blomberc H, Helenius H, Koskenvuo M. Sense of coherence and health–does the association depend on resistance resources? A study of 3115 adults in Finland. Psychol Health 1999;14:937–48.10.1080/08870449908407358Suche in Google Scholar
47. Kennedy P, Lude P, Elfström ML, Smithson E. Sense of coherence and psychological outcomes in people with spinal cord injury: appraisals and behavioural responses. Br J Health Psychol 2010;15:611–21.10.1348/135910709X478222Suche in Google Scholar PubMed
48. Pelchat D, Lefebvre H, Perreault M. Differences and similarities between mothers’ and fathers’ experiences of parenting a child with a disability. J Child Healthc 2003;7:231–47.10.1177/13674935030074001Suche in Google Scholar PubMed
49. Hittner JB. Novel methods for analyzing multifaceted personality scales: sense of coherence and depression as an example. J Psychol 2000;134:199–209.10.1080/00223980009600862Suche in Google Scholar PubMed
©2015 by De Gruyter
Artikel in diesem Heft
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Artikel in diesem Heft
- Frontmatter
- Review
- Confucian thoughts on special education in China: key thoughts and impact
- Original Articles
- Vision of Israeli physical therapy national directors on the future development of the profession
- Computer-aided animated gesture-driven facial model with speech synthesis
- Restless Legs Syndrome in adolescent school children in Belgaum city: a cross-sectional study
- A one-year retrospective review of vitamin D level, bone profile, liver function tests and body mass index in children with cystic fibrosis in a children’s university hospital
- Analysis of the positioning of the head, trunk, and upper limbs during gait in children with visual impairment
- Cultural translation of a domestic violence intervention for small children: key policy and practice directions
- Sense of coherence and WHOQoL among parents of children with ASD in Malaysia
- Phonetic environment of disfluencies in children with stuttering
- Parental perception of developmental vulnerability after inter-country adoption: a 10-year follow-up study: longitudinal study after inter-country adoption
- Quantitative analysis of static equilibrium in women after mastectomy
- The relationship between sports teachers’ reports, motor performance and perceived self-efficacy of children with developmental coordination disorders
- Case Report
- Ectrodactyly ectodermal dysplasia cleft lip/palate (EEC) syndrome in a family