Effectiveness of a Family Management Intervention Program among Families of Children with Autism: A Randomized Controlled Trial
Keywords:
Autism, Burden, Family management, Family quality of life, Randomized Controlled Trial, VietnamAbstract
An increasing number of children are diagnosed with autism, affecting their family’s quality of life and various burdens to family caregivers. Several studies have evaluated the effectiveness of interventions to improve the health conditions of children with autism, but few on family outcomes. This two-group randomized controlled trial determined the effectiveness of a 4-week family-management intervention program on family quality of life and burden among family caregivers of children with autism. Forty caregivers of children diagnosed with autism in Hanoi, Vietnam, were randomly assigned to an intervention (n = 20) and a control group (n = 20). The intervention group received a Family Management Intervention Program, in addition to routine care, while the control group received only routine care. The Beach Center Family Quality of Life Scale and the Caregiver’s Strain Questionnaire were used to measure the outcome variables at three-time points; baseline (week 0), post-intervention immediately (week 4), and follow-up (week 8). Descriptive statistics and 2-way repeated-measures ANOVAs were used to analyze the data.
The findings revealed that the participants in the intervention group had a significantly higher family quality of life and significantly lower caregiver burden than those in the control group after attending the intervention and remaining overtime. Results provided evidence that the family-management intervention program improved outcomes for families of children with autism. This program needs further testing. After this, nurses and healthcare providers responsible for families and children with autism can integrate this program as part of their services.
References
1. Maenner MJ, Shaw KA, Baio J, et al. Prevalence of autism spectrum disorder among children aged 8 years — autism and developmental disabilities monitoring network, 11 sites, United States, 2016. MMWR Surveill Summ 2020;69 (No. SS-4):1–12. doi: 10.15585/mmwr.ss6904a1.
2. General Statistics Office of Vietnam. Alarming: children with autism in Vietnam are increasing; 2019 [cited 2021 Aug 20]. Available from: https://tuoitre.vn/tre-em-tu-ky-taiviet-nam-gia-tang-phan-lon-khong-duoc-tri-lieugiao-duc-phu-hop-202104061327 35649. htm (inVietnamese)
3. Bozkurt G, Uysal G, Düzkaya DS. Examination of care burden and stress coping styles of parents of children with autism spectrum disorder. J Pediatr Nurs. 2019;47:142-7. doi: 10.1016/j.pedn.2019.05.005.
4. Alenazi DS, Hammad SM, Mohamed AE. Effect of autism on parental quality of life in Arar city, Saudi Arabia. J Family Community Med. 2020;27(1):15-22. doi:10.4103/jfcm.JFCM_157_19.
5. Bayoumi M, Ezzat O, Samarkand O. Quality of life and subjective burden on family caregiver of children with ASD. Am. J. Nurs. Sci. 2017;6(1):33-9. doi: 10.11648/j.ajns.20170601.15.
6. Muris P, Ollendick TH. Current challenges in the diagnosis and management of selective mutism in children. Psychol Res Behav Manag. 2021;14:159-67. doi:10.2147/PRBM.S274538.
7. Celik H, Acikel SB, Ozdemir MAF, Aksoy E, Oztoprak U, Ceylan N, Yuksel D. Evaluation of the clinical characteristics of children with autism spectrum disorder and epilepsy and the perception of their parents on quality of life. Epilepsy Res. 2021;172:106599. doi: 10.1016/j.eplepsyres. 2021.106599.
8. Ten Hoopen LW, de Nijs PFA, Duvekot J, Greaves-Lord K, Hillegers MHJ, Brouwer WBF, Hakkaart-van Roijen L. Children with an autism spectrum disorder and their caregivers: capturing health-related and care-related quality of life. J Autism Dev Disord. 2020;50(1):263-77. doi: 10.1007/s10803-019-04249-w.
9. Picardi A, Gigantesco A, Carolla E, et al. Parental burden and its correlates in families of children with autism spectrum disorder: a multicentre study with two comparison groups. Clin Pract Epidemiol mental health. 2018;14:143-76.
doi:10.2174/17450179018140 10143.
10. Pacia C, Holloway J, Gunning C, Lee H. A systematic review of family-mediated social communication interventions for young children with autism. Rev J Autism Dev Disord. 2021;1:1-27. doi: 10.1007/s40489-021-00249-8.
11. Rojas-Torres LP, Alonso-Esteban Y, Alcantud-Marín F. Early intervention with parents of children with autism spectrum disorders: a review of programs. Children (Basel). 2020;7(12):294. doi:10.3390/children7120294.
12. Fuller EA, Kaiser AP. The effects of early intervention on social communication outcomes for children with autism spectrum disorder: a meta-analysis. J Autism Dev Disord.2020;50(5):1683-700. doi:10.1007/s10803-019-03927-z.
13. Knafl K, Deatrick JA, Gallo AM. The interplay of concepts, data, and methods in the development of the Family Management Style Framework. J Fam Nurs. 2008 Nov;14(4):412-28. doi: 10.1177/1074840708327138.
14. Knafl KA, Deatrick JA, Knafl GJ, Gallo AM, Grey M, Dixon J. Patterns of family management of childhood chronic conditions and their relationship to child and family functioning. J Pediatr Nurs. 2013 Nov-Dec;28(6):523-35. doi: 10.1016/j.pedn.2013.03.006.
15. Frantz R, Hansen S, Machalicek W. Interventions to promote wellbeing in parents of children with ASD: a systematic review. Rev J Autism Dev Disord. 2018;5(1), 58-77. doi: 10.1007/s40489-017-0123-3.
16. Wang H, Hu X, Han ZR. Parental stress, involvement, and family quality of life in mothers and fathers of children with autism spectrum disorder in mainland China: a dyadic analysis. Res Dev Disabil. 2020;107:103791. doi:10.1016/j.ridd.2020.103791.
17. Mello C, Rivard M, Terroux A, Mercier C. Quality of life in families of young children with autism spectrum disorder. Am J Intellect Dev Disabil. 2019;124(6):535-48. doi:10.1352/1944-7558-124.6.535.
18. Bechet AK. Positive thinking training intervention for caregivers of persons with autism: establishing fidelity. Arch Psychiatr Nurs. 2017;31(3):306-10. doi:10.1016/j.apnu.2017.02.006.
19. Marino F, Chilà P, Failla C, et al. Tele-assisted behavioral intervention for families with children with autism spectrum disorders: a randomized control trial. Brain Sci. 2020;10(9):649. doi:10.3390/brainsci10090649.
20. Deb SS, Retzer A, Roy M, Acharya R, Limbu B, Roy A. The effectiveness of parent training for children with autism spectrum disorder: a systematic review and meta-analyses. BMC Psychiatry. 2020;20(1):583. doi:10.1186/s12888-020-02973-7.
21. Kieckhefer GM, Trahms CM, Churchill SS, Kratz L, Using N, Villareal N. A randomized clinical trial of the building on family strengths program: an education program for parents of children with chronic health conditions. Matern Child Health J. 2014;18(3):563-74. doi: 10.1007/s10995-013-1273-2.
22. 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(3):278-85. doi: 10.4103/psychiatry.IndianJPsychiatry_300_17.
23. Anh, TML. Factors related to burden among caregivers of children with autism in Vietnam [master's thesis].[Internet]: Burapha University; 2015 [cited 2021 Aug 20]. Available from: http://digital_collect.lib.buu.ac.th/dcms /files/56910323.pdf
24. Faul F, Erdfelder E, Buchner A. G*Power 3: a flexible statistical power analysis program for the social, behavioral, and biomedical sciences. Behav Res Methods. 2007 May;39, 175-91. doi: 10.3758/BF03193146.
25. Iadarola S, Levato L, Harrison B, et al. Teaching parents behavioral strategies for autism spectrum disorder (ASD): effects on stress, strain, and competence. J Autism Dev Disord. 2018;48(4):1031-40. doi:10.1007/s10803-017-3339-2.
26. Polit DF, Beck CT. Nursing research: generating and assessing evidence for nursing practice. 10th edition, Philadelphia: Wolters Kluwer Health, 2017.
27. Hoffman L, Marquis J, Poston D, Summers JA, Turnbull A. Assessing family outcomes: psychometric evaluation of the Beach Center Family Quality of Life Scale. J Marriage Fam. 2006 Oct;68:1069-83. doi: 10.1111/j.1741-3737.2006.00314.x.
28. World Health Organization. Process of translation and adaptation of instruments. 2016 [cited 2020 Oct 12]. Available from: http://www.who.int/substance_abuse/research _tools/translation
29. Brannan AM., Heflinger CA, Bickman L. The caregiver strain questionnaire: measuring the impact of the family of living with a child with serious emotional disorders. J. Emot. Behav. Disord.. 1997;5:212–22.
30. MacKenzie KT, Eack SM. Interventions to improve outcomes for parents of children with autism spectrum disorder: a meta-analysis. J Autism Dev Disord. 2021 Jun 29. doi:10.1007/s10803-021-05164-9.
31. Catalano D, Holloway L, Mpofu E. Mental health interventions for parent carers of children with autistic spectrum disorder: practice guidelines from a critical interpretive synthesis (CIS) systematic review. Int J Environ Res Public Health. 2018;15(2):341. doi:10.3390/ijerph15020341.
32. Singh NN, Lancioni GE, Medvedev ON, Hwang YS, Myers RE. A component analysis of the mindfulness-based positive behavior support (MBPBS) program for mindful parenting by mothers of children with autism spectrum disorder. Mindfulness (NY). 2020 May 11:1-13. doi:10.1007/s12671-020-01376-9.
2. General Statistics Office of Vietnam. Alarming: children with autism in Vietnam are increasing; 2019 [cited 2021 Aug 20]. Available from: https://tuoitre.vn/tre-em-tu-ky-taiviet-nam-gia-tang-phan-lon-khong-duoc-tri-lieugiao-duc-phu-hop-202104061327 35649. htm (inVietnamese)
3. Bozkurt G, Uysal G, Düzkaya DS. Examination of care burden and stress coping styles of parents of children with autism spectrum disorder. J Pediatr Nurs. 2019;47:142-7. doi: 10.1016/j.pedn.2019.05.005.
4. Alenazi DS, Hammad SM, Mohamed AE. Effect of autism on parental quality of life in Arar city, Saudi Arabia. J Family Community Med. 2020;27(1):15-22. doi:10.4103/jfcm.JFCM_157_19.
5. Bayoumi M, Ezzat O, Samarkand O. Quality of life and subjective burden on family caregiver of children with ASD. Am. J. Nurs. Sci. 2017;6(1):33-9. doi: 10.11648/j.ajns.20170601.15.
6. Muris P, Ollendick TH. Current challenges in the diagnosis and management of selective mutism in children. Psychol Res Behav Manag. 2021;14:159-67. doi:10.2147/PRBM.S274538.
7. Celik H, Acikel SB, Ozdemir MAF, Aksoy E, Oztoprak U, Ceylan N, Yuksel D. Evaluation of the clinical characteristics of children with autism spectrum disorder and epilepsy and the perception of their parents on quality of life. Epilepsy Res. 2021;172:106599. doi: 10.1016/j.eplepsyres. 2021.106599.
8. Ten Hoopen LW, de Nijs PFA, Duvekot J, Greaves-Lord K, Hillegers MHJ, Brouwer WBF, Hakkaart-van Roijen L. Children with an autism spectrum disorder and their caregivers: capturing health-related and care-related quality of life. J Autism Dev Disord. 2020;50(1):263-77. doi: 10.1007/s10803-019-04249-w.
9. Picardi A, Gigantesco A, Carolla E, et al. Parental burden and its correlates in families of children with autism spectrum disorder: a multicentre study with two comparison groups. Clin Pract Epidemiol mental health. 2018;14:143-76.
doi:10.2174/17450179018140 10143.
10. Pacia C, Holloway J, Gunning C, Lee H. A systematic review of family-mediated social communication interventions for young children with autism. Rev J Autism Dev Disord. 2021;1:1-27. doi: 10.1007/s40489-021-00249-8.
11. Rojas-Torres LP, Alonso-Esteban Y, Alcantud-Marín F. Early intervention with parents of children with autism spectrum disorders: a review of programs. Children (Basel). 2020;7(12):294. doi:10.3390/children7120294.
12. Fuller EA, Kaiser AP. The effects of early intervention on social communication outcomes for children with autism spectrum disorder: a meta-analysis. J Autism Dev Disord.2020;50(5):1683-700. doi:10.1007/s10803-019-03927-z.
13. Knafl K, Deatrick JA, Gallo AM. The interplay of concepts, data, and methods in the development of the Family Management Style Framework. J Fam Nurs. 2008 Nov;14(4):412-28. doi: 10.1177/1074840708327138.
14. Knafl KA, Deatrick JA, Knafl GJ, Gallo AM, Grey M, Dixon J. Patterns of family management of childhood chronic conditions and their relationship to child and family functioning. J Pediatr Nurs. 2013 Nov-Dec;28(6):523-35. doi: 10.1016/j.pedn.2013.03.006.
15. Frantz R, Hansen S, Machalicek W. Interventions to promote wellbeing in parents of children with ASD: a systematic review. Rev J Autism Dev Disord. 2018;5(1), 58-77. doi: 10.1007/s40489-017-0123-3.
16. Wang H, Hu X, Han ZR. Parental stress, involvement, and family quality of life in mothers and fathers of children with autism spectrum disorder in mainland China: a dyadic analysis. Res Dev Disabil. 2020;107:103791. doi:10.1016/j.ridd.2020.103791.
17. Mello C, Rivard M, Terroux A, Mercier C. Quality of life in families of young children with autism spectrum disorder. Am J Intellect Dev Disabil. 2019;124(6):535-48. doi:10.1352/1944-7558-124.6.535.
18. Bechet AK. Positive thinking training intervention for caregivers of persons with autism: establishing fidelity. Arch Psychiatr Nurs. 2017;31(3):306-10. doi:10.1016/j.apnu.2017.02.006.
19. Marino F, Chilà P, Failla C, et al. Tele-assisted behavioral intervention for families with children with autism spectrum disorders: a randomized control trial. Brain Sci. 2020;10(9):649. doi:10.3390/brainsci10090649.
20. Deb SS, Retzer A, Roy M, Acharya R, Limbu B, Roy A. The effectiveness of parent training for children with autism spectrum disorder: a systematic review and meta-analyses. BMC Psychiatry. 2020;20(1):583. doi:10.1186/s12888-020-02973-7.
21. Kieckhefer GM, Trahms CM, Churchill SS, Kratz L, Using N, Villareal N. A randomized clinical trial of the building on family strengths program: an education program for parents of children with chronic health conditions. Matern Child Health J. 2014;18(3):563-74. doi: 10.1007/s10995-013-1273-2.
22. 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(3):278-85. doi: 10.4103/psychiatry.IndianJPsychiatry_300_17.
23. Anh, TML. Factors related to burden among caregivers of children with autism in Vietnam [master's thesis].[Internet]: Burapha University; 2015 [cited 2021 Aug 20]. Available from: http://digital_collect.lib.buu.ac.th/dcms /files/56910323.pdf
24. Faul F, Erdfelder E, Buchner A. G*Power 3: a flexible statistical power analysis program for the social, behavioral, and biomedical sciences. Behav Res Methods. 2007 May;39, 175-91. doi: 10.3758/BF03193146.
25. Iadarola S, Levato L, Harrison B, et al. Teaching parents behavioral strategies for autism spectrum disorder (ASD): effects on stress, strain, and competence. J Autism Dev Disord. 2018;48(4):1031-40. doi:10.1007/s10803-017-3339-2.
26. Polit DF, Beck CT. Nursing research: generating and assessing evidence for nursing practice. 10th edition, Philadelphia: Wolters Kluwer Health, 2017.
27. Hoffman L, Marquis J, Poston D, Summers JA, Turnbull A. Assessing family outcomes: psychometric evaluation of the Beach Center Family Quality of Life Scale. J Marriage Fam. 2006 Oct;68:1069-83. doi: 10.1111/j.1741-3737.2006.00314.x.
28. World Health Organization. Process of translation and adaptation of instruments. 2016 [cited 2020 Oct 12]. Available from: http://www.who.int/substance_abuse/research _tools/translation
29. Brannan AM., Heflinger CA, Bickman L. The caregiver strain questionnaire: measuring the impact of the family of living with a child with serious emotional disorders. J. Emot. Behav. Disord.. 1997;5:212–22.
30. MacKenzie KT, Eack SM. Interventions to improve outcomes for parents of children with autism spectrum disorder: a meta-analysis. J Autism Dev Disord. 2021 Jun 29. doi:10.1007/s10803-021-05164-9.
31. Catalano D, Holloway L, Mpofu E. Mental health interventions for parent carers of children with autistic spectrum disorder: practice guidelines from a critical interpretive synthesis (CIS) systematic review. Int J Environ Res Public Health. 2018;15(2):341. doi:10.3390/ijerph15020341.
32. Singh NN, Lancioni GE, Medvedev ON, Hwang YS, Myers RE. A component analysis of the mindfulness-based positive behavior support (MBPBS) program for mindful parenting by mothers of children with autism spectrum disorder. Mindfulness (NY). 2020 May 11:1-13. doi:10.1007/s12671-020-01376-9.
Downloads
Published
2021-12-09
How to Cite
1.
Thi Lan Anh Mai, Chaimongkol N. Effectiveness of a Family Management Intervention Program among Families of Children with Autism: A Randomized Controlled Trial. PRIJNR [Internet]. 2021 Dec. 9 [cited 2024 Nov. 22];26(1):63-77. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/255275
Issue
Section
Original paper
License
Copyright: The Pacific Rim International Journal of Nursing Research, Thailand Nursing & Midwifery Council has exclusive rights to publish, reproduce and distribute the manuscript and all contents therein.
.png)
