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1 Republic of the Philippines

2 Western Mindanao State University
3 COLLEGE OF NURSING
4 Zamboanga City
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9 UNRAVELLING THE CHALLENGES FACED BY PARENTS RAISING
10 CHILDREN WITH AUTISM SPECTRUM DISORDER
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13 A Research Proposal Presented to the Research Faculty of
14 Western Mindanao State University
15 College of Nursing
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21 In Partial Fulfillment of the Requirements
22 in Nursing Research I
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24
25
26
27 Presented by:
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29 Verni Bianca Burgos
30 Axel A. Abejon
31 Camille Nicole A. Alcala
32 Daniel Dave D. Barrios
33 Camille Nicole M. Enriquez
34 Andrei Carl E. Hansen
35 Nashreen J. Malik
36 Alexandra S. Pacaldo
37 Mitzi P. Ramchand
38 Yuri T. Santos
39
40
41
42 November 2023
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43 TABLE OF CONTENTS

44 Title Page.......................................................................................................................i
45 Table of Contents.........................................................................................................ii
46 List of Tables..............................................................................................................iii
47 List of Figures.............................................................................................................iv
48
49 INTRODUCTION
50 Background of the Study................................................................................1
51 Objectives of the Study..................................................................................3
52 Significance of the Study...............................................................................3
53 Definition of Terms/Operational Definitions.................................................4

54 METHODOLOGY
55 Data Collection.................................................................................................5
56 Criteria for including Studies in the Review......................................5
57 Search Methods for Identification of Studies.....................................6
58 Data Analysis and Synthesis............................................................................7

59 REFERENCES...........................................................................................................9

60 APPENDICES
61 Appendix A. Eligibility Criteria Table..........................................................10
62 Appendix B. PRISMA 2020 Flow Diagram.................................................11
63 Appendix C. Synthesis Matrix......................................................................12

64 CURRICULUM VITAE..........................................................................................13
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72 LIST OF TABLES

73 Table No. Table Name Page

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75 1 Eligibility Criteria Table............................................10
76 2 Content Analysis........................................................12
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93 LIST OF FIGURES

94 Figure No. Figure Name Page

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96 1 PRISMA 2020 Flow Diagram.....................................11
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99 INTRODUCTION

100
101 Background of the Study

102 Autism Spectrum Disorders (ASD) are a group of neurodevelopmental disorders

103 that can start in childhood and last a lifetime. They have an impact on many areas of

104 functioning and are characterized by persistent deficits in social interaction and

105 communication (Picardi et al., 2018). The main characteristics of people with ASD may

106 include difficulties understanding and interpreting social cues, difficulties establishing

107 and maintaining relationships, communication deficits, such as delayed language

108 development or difficulty starting and maintaining conversations, and an inclination for

109 repetitive behaviors or intensely narrowed interests.

110 The prevalence of ASD has been steadily increasing over the past few decades,

111 making it one of the most common developmental disorders in children. According to the

112 most conservative prevalence estimates, ASD is one of the top 20 childhood illnesses in

113 the world, with about 1 in 100 children thought to be autistic globally. This number is an

114 average, because stated prevalence differs widely between studies (Zeidan et al., 2022).

115 Along with these estimates, it is evident that there are numerous children suffering daily

116 from ASD and the number of cases is still increasing up until the present.

117 Children with ASD experience challenges because of their difficulties in

118 comprehending social interaction and behavior, having trouble understanding and

119 utilizing communication, and having trouble with having less flexibility of thoughts and

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120 actions. The majority of children with ASD struggle to varying degrees in these areas

121 (Prata et. al., 2019). Impaired social relationships, communication barriers, educational

122 challenges, behavioral challenges, reduced independence, and co-occurring mental health

123 disorders such as anxiety and depression, are the frequent results of these challenges.

124 Parents of children with ASD are frequently more likely to experience challenges,

125 stress and have a lower quality of life, compared to parents of usually developing

126 children and parents of children with other developmental disorders (Schnabel et al.,

127 2019). Raising a child with ASD presents special and difficult struggles every day.

128 Parents of children with ASD may confront a wide variety of experiences and challenges.

129 These challenges are multifaceted and encompass various aspects of daily life.

130 Furthermore, knowing that their children's autistic traits may be persistent and lifelong

131 can make parents' distress worse.

132 While research has begun to shed light on the challenges experienced by parents

133 of children with ASD, there remains a need for a more comprehensive understanding of

134 the nature and extent of these challenges. This study seeks to delve deeper into the

135 challenges faced by parents raising children with ASD, exploring their multifaceted

136 nature.

137 Furthermore, understanding the factors that contribute to both resilience and

138 vulnerability among parents in this context is essential. This study aims to gain a holistic

139 understanding underlying the challenges these parents experience, particularly on their

140 awareness of stress-inducing problems and coping mechanisms adopted by them.

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143

144 Objectives of the Study

145 The objective of this research is to examine and understand the challenges

146 encountered by parents who are raising children with Autism Spectrum Disorders (ASD).

147 Specifically, it aims to:

148 1. Identify the challenges faced by parents raising children with ASD

149 2. Determine which challenge/s lead to stress

150 3. Identify the coping measures employed by the parents raising children with ASD

151 to address stress

152

153 Significance of the Study

154 This research study’s significance lies in its potential to make a meaningful

155 impact on various stakeholders and contribute to the well-being of families affected by

156 autism spectrum disorder. The researchers point out that the study results will contribute

157 to the following:

158 Parents. By recognizing their challenges and giving them guidance on how to

159 cope with the difficulties of raising children with ASD, knowledge and understanding of

160 these difficulties can empower parents.

161 Children with ASD. The study's findings can indirectly impact the lives of

162 children with ASD by addressing the specific difficulties their parents face. By

163 alleviating parental stress and improving their ability to care for their children, it can

164 positively influence the overall quality of life for children on the autism spectrum.

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165 Health Care Professionals. Health care professionals can employ the findings of

166 this study to acquire more understanding on the multifaceted challenges faced by parents

167 raising children with ASD.

168 Future Researchers. Findings from this study can guide future research in the

169 field of ASD and parenting. The knowledge and insights gained from this study can be

170 expanded upon by researchers to investigate similar subjects.

171

172 Definition of Terms

173 To facilitate the understanding of the research study, different terms are defined

174 operationally herein:

175 Autism Spectrum Disorder (ASD). A group of neurodevelopmental disorders

176 that can start in childhood and last a lifetime

177 Challenges. Encompasses the multifaceted difficulties experienced by parents of

178 children with ASD.

179 Children. Individuals aged 0-12 who are diagnosed with ASD.

180 Coping Strategies. Various techniques and approaches used by parents to

181 manage the challenges associated with raising a child with ASD.

182 Parents. Individuals who are raising children with ASD.

183 Stress. Psychological distress experienced by parents, including symptoms of

184 anxiety, depression, and other mental health challenges resulting from the demands of

185 caring for a child

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188 METHODOLOGY

189 Data Collection

190 Initially, the researchers will conduct an individual search through Google as a

191 search engine to arrive at specific databases. Next, academic journals will be examined

192 according to its abstract and objectives to check if they can be of use for the study. For

193 the final screening, the selected studies will further be narrowed down with the use of the

194 Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). Then,

195 from those final selected studies, all relevant data needed for the study will be taken.

196 Lastly, the researchers will sort and categorize different arguments and main ideas

197 presented in the selected journals through a synthesis matrix.

198

199 Criteria for including Studies in the Review

200 The inclusion criteria for this review focuses on studies relevant to understanding

201 the challenges encountered by parents raising children with Autism Spectrum Disorders

202 (ASD). The target population will be parents of children with ASD. Articles will be

203 considered if they provide substantial insights into the multifaceted nature of these

204 challenges and the coping strategies employed by parents. Specifically, the inclusion

205 criteria will encompass studies conducted from 2018 onwards that will contain full-text

206 reports and comprehensive discussions of the challenges faced by parents of children

207 with ASD.

208 Exclusion criteria will involve studies with limited data or those primarily focused

209 on other topics unrelated to the challenges faced by parents of children with ASD.

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210 Studies written in languages other than English will also be excluded. These

211 criteria are going to be thoughtfully established to ensure that only relevant and reliable

212 studies will be incorporated into the synthesis matrix, minimizing the inclusion of

213 irrelevant sources and maintaining the quality and focus of the research. (see Appendix

214 A)

215 Search Methods for Identification of Studies

216 In this study, a literature review will be conducted. Google, a reliable search

217 engine, will be used to look for sources on databases such as PubMeD. ScienceDirect,

218 Eric (Education Resources Information Center), and (Scientific Electronic Library

219 Online), to obtain the necessary sources for the study. The terms “autism spectrum

220 disorder (ASD)”, “challenges”, “children with ASD “, “parental stress”, and “coping

221 strategies” will be used to find related journal articles that were published from 2018 to

222 2023.

223 Moreover, the Preferred Reporting Items for Systematic Reviews and Meta-

224 Analyses (PRISMA) tool will be used as a method in collecting and identifying the

225 qualified literatures to be used in the study. The knowledge and insights gained from this

226 study can be expanded upon by researchers to investigate similar subjects. Researchers

227 can increase the validity and reliability of their research findings by following the

228 PRISMA principles to make sure their systematic reviews and meta-analyses are

229 rigorous, transparent, and repeatable. (see Appendix B)

230

231 Data Analysis

232 Data analysis involves several phases, including collecting, organizing, and
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233 analyzing data to produce insights that assist in decision-making. (Calzon, 2023). In this

234 study, the researchers will employ directed content analysis as a well-defined qualitative

235 research method to delve into the experiences and challenges faced by parents while

236 raising children with ASD. Directed content analysis, a structured approach to data

237 analysis, will be utilized to uncover valuable insights from a selection of relevant

238 research articles gathered based on specific inclusion criteria.

239 This method will begin by identifying key variables relevant to the research

240 question as the initial coding strategies. These variables will serve as the basis for

241 categorizing and sorting the data, aligning with the study's defined objectives and

242 framework. Subsequently, the information and key findings from each of the chosen

243 research articles will be meticulously analyzed, and these findings will be categorized

244 into new thematic categories or integrated as subcategories within existing ones. This

245 approach will help consolidate and organize the existing body of literature, allowing the

246 researchers to draw meaningful conclusions and insights regarding the challenges faced

247 by parents in the context of raising children with ASD.

248

249 Data Synthesis

250 Data coding is essential in directed content analysis, especially when exploring

251 the challenges parents face in raising ASD children. In this study, the researchers will

252 employ a synthesis matrix, adapted from NC State University Writing and Speaking

253 Tutorial Service Tutors by Ingram et.al. (2006), with some alterations in order to fit with

254 the study (see Appendix C). A synthesis matrix will be used to visually represent the key

255 thoughts that emerged from the main research studies with the aim of identifying the
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256 agreement or disagreement among different authors on these ideas. Instead of simply

257 summarizing the sources, the matrix serves as an ordering scheme that places the main

258 ideas coming from every chosen source, while showing correlations among them.

259
260 By means of a standardized approach of rows and columns data coming from

261 source, material will arrive in table format. Name of the author(s), title of the study, and

262 the date it was published will be under the sources. This will be then followed with a

263 statement discussing the coping mechanisms or strategies, and another column is about

264 the impacts on parents. The last result will include the extraction from all the studies,

265 which will provide information on parental challenges in caring for children with autism

266 spectrum disorders.

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281 REFERENCES

282 Calzon, B. (2023, March 3). What Is Data Analysis? Methods, Techniques, Types & How-
283 To. BI Blog | Data Visualization & Analytics Blog | Datapine.
284 https://www.datapine.com/blog/data-analysis- methodsandtechniques/?
285 fbclid=IwAR1VzOi_emuyLF6MRrj9ToG9wBef04RwhaO5iRRDSaWjVI
286 CxRgimY51D3UCDC. (2021, November 29). Child Development: Infants (0-1
287 years) | cdc.
288 Page, M. J., McKenzie, J. E., Bossuyt, P. M., Boutron, I., Hoffmann, T. C., Mulrow, C. D.,
289 Shamseer, L., Tetzlaff, J. M., Akl, E. A., Brennan, S. E., Chou, R., Glanville, J.,
290 Grimshaw, J. M., Hróbjartsson, A., Lalu, M. M., Li, T., Loder, E. W., Mayo-Wilson, E.,
291 McDonald, S., . . . Moher, D. (2021, March 29). The PRISMA 2020 statement: an
292 updated guideline for reporting systematic reviews. BMJ, n71.
293 Picardi, A., Gigantesco, A., Tarolla, E., Stoppioni, V., Cerbo, R., Cremonte, M.,
294 Alessandri, G., Lega, I., & Nardocci, F. (2018, July 31). Parental Burden and its
295 Correlates in Families of Children with Autism Spectrum Disorder: A Multicentre
296 Study with Two Comparison Groups. Clinical Practice & Epidemiology in Mental
297 Health, 14(1), 143–176.
298
299 Prata, J., Lawson, W., & Coelho, R. (2019). Stress factors in parents of children on the
300 autism spectrum: An integrative model approach. International Journal of Clinical
301 Neurosciences and Mental Health, 6(2), 1-9
302
303 Schnabel, A., Youssef, G. J., Hallford, D. J., Hartley, E. J., McGillivray, J. A., Stewart, M.,
304 Forbes, D., & Austin, D. W. (2020). Psychopathology in parents of children with autism
305 spectrum disorder: A systematic review and meta-analysis of prevalence. Autism, 24(1),
306 26–40.
307 Zeidan, J., Fombonne, E., Scorah, J., Ibrahim, A., Durkin, M. S., Saxena, S., Yusuf, A.,
308 Shih, A., & Elsabbagh, M. (2022, March 3). Global prevalence of autism: A
309 systematic review update. Autism Research, 15(5), 778–790.
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318

319 APPENDIX A

320 Table 1

321 Eligibility Criteria Table

322

323

Criteria Inclusion Exclusion

Population The target population comprises parents of Parents of usually

children with Autism Spectrum Disorders developing children,
(ASD). and parents of
children with other
developmental
disorder
Outcome Articles were considered if they provided Studies with limited
substantial insights into the multifaceted data or those
nature of the challenges encountered by primarily focused on
parents raising children with ASD and the other topics
coping strategies employed by parents. unrelated to the
challenges faced by
parents of children
with ASD.
Time To include 80% of studies conducted on 2018 More than 20% of
onwards and to accept at most 20% of studies studies before the
(not republished) conducted before the year year 2018.
2018.
Design Qualitative Studies, Experimental Studies, N/A
Quasi-Experimental, Observational Studies,
Cohort Studies, and Quantitative Studies.
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328
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329
330
331
332
333 APPENDIX B
334
335 Figure 1

336 PRISMA 2020 Flow Diagram

337
338
339 Identification of studies via databases and registers
340
Identification Records removed before
341
screening:
342 Duplicate records removed
343
Records identified from*:
(n = )
344 Databases (n = ) Records marked as ineligible
345 Registers (n = ) by automation tools (n = )
346 Records removed for other
reasons (n = )
347
348
349
350 Screening
Records screened Records excluded**
351 (n = ) (n = )
352 a
353
354
355 Reports sought for retrieval Reports not retrieved
356 (n = ) (n = )
357
358
359
360 Reports assessed for eligibility Reports excluded:
(n = ) Reason 1 (n = )
361
362 Reason 2 (n = )
363 Reason 3 (n = )
364 etc.
365
366
367 Included
Studies included in review
368 (n = )
369 Reports of included studies
(n = )
370

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371
372
373
374
375
376
377
378
379 APPENDIX C

Table 2

Content Analysis

Sources Challenges Coping Strategies Impact on Parents

Source #1

Study #2

Study #3

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384

385

386

387

388

389

390

391

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393

394

395 CURRICULUM VITAE

396
397 VERNI BIANCA BURGOS
398 Address: Guiwan, Zamboanga City
399 Cellphone number: 09260952945
400 Email: [email protected]
401
402
403
404
405
406
407 PERSONAL INFORMATION
408 Age : 20
409 Birthdate : September 3, 2003
410 Birthplace : Zamboanga City
411 Sex : Female
412 Civil Status : Single
413 Religion : Roman Catholic
414
415 EDUCATIONAL BACKGROUND
416 Tertiary
417 Bachelor of Science in Nursing – Western Mindanao State University
418 Normal Rd., Baliwasan Zamboanga City
419 August 2021 – Present
420 Secondary (Senior High School and Junior High School)
421 Pagadian City Science High School
422 Tuburan District, Pagadian City
423 2015 – 2021
424 Primary
425 Pagadian City Pilot School
426 San Jose, Pagadian City
427 2014 – 2015
428
429 Putik Central School
430 Putik, Zamboanga City
431 2008 – 2014
432

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433 AWARDS AND HONORS

434 With Honors (Elementary)
435 With Honors (High School)
436 With High Honors (Senior High School)
437
438 SKILLS
439  Time Managemen
440
441  Adaptability
442  Leadership
443  Teamwork/Collaboration
444
445 KEY STRENGTH AND COMPETENCIES
446  Problem Solving
447  Planning/Organizing
448  Initiative
449
450 REFERENCES
451 Rubelle Marshah Ho-Alavar, DSN, RN
452 Adviser in Nursing Research I
453 Western Mindanao State University
454 Normal Rd., Baliwasan Zamboanga City, 7000 Zamboanga del Sur
455
456 Jocelyn Orquia, MAN, RN
457 Program Adviser
458 Western Mindanao State University
459 Normal Rd., Baliwasan Zamboanga City, 7000 Zamboanga del Sur
460
461 Wafia S. Sajili, PhD, RN
462 Research Coordinator/Subject Adviser in Nursing Research I
463 Western Mindanao State University
464 Normal Rd., Baliwasan Zamboanga City, 7000 Zamboanga del Sur
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467

468

469

470

471
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472

473

474

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476 AXEL A. ABEJON

477 Address: Turawan Drive, Mampang,
478 Zamboanga City
479 Cellphone number: 09665543659
480 Email: [email protected]
481
482
483
484
485
486 PERSONAL INFORMATION
487 Age : 20
488 Birthdate : July 01, 2003
489 Birthplace : Zamboanga City
490 Gender : Male
491 Civil Status : Single
492 Religion : INC
493
494 EDUCATIONAL BACKGROUND
495 Tertiary
496 Bachelor of Science in Nursing – Western Mindanao State University
497 Normal Rd., Baliwasan Zamboanga City
498 August 2021 – Present
499 Secondary (Senior High School)
500 Western Mindanao State University
501 Normal Rd., Baliwasan Zamboanga City
502 2019 – 2021
503 Secondary (Junior High School)
504 Ramon Magsaysay High School
505 2015 -2019
506
507 Primary
508 Juan Sumulong Elementray Schoool
509 2011 – 2015
510
511 Mampang Elementary School
512 2008 – 2011

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513
514
515 AWARDS AND HONORS
516 Consistent honor student (Elementary)
517 Consistent honor student (Junior High School)
518 Consistent honor student (Senior High School)
519
520
521
522 SKILLS
523  Active Listening
524  Communication
525  Adaptability
526  Teamwork
527  Analytical Thinking
528
529 KEY STRENGTH AND COMPETENCIES
530  Positive Attitude
531  Communication Skills
532  Adaptability
533  Teamwork and Collaboration
534  Time Management
535
536 REFERENCES
537
538
539
540
541
542
543
544
545
546
547
548
549

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550
551
552
553
554
555
556

557 CAMILLE NICOLE A. ALCALA

558 Address: Narra Drive, Tugbungan,
559 Zamboanga City
560 Cellphone number: 09263351768
561 Email: [email protected]
562
563
564
565
566
567 PERSONAL INFORMATION
568 Age : 20
569 Birthdate : April 9, 2003
570 Birthplace : Zamboanga City
571 Gender : Female
572 Civil Status : Single
573 Religion : Roman Catholic
574
575 EDUCATIONAL BACKGROUND
576 Tertiary
577 Bachelor of Science in Nursing – Western Mindanao State University
578 Normal Rd., Baliwasan Zamboanga City
579 August 2021 – Present
580 Secondary (Senior High School)
581 Ateneo de Zamboanga University
582 La Purisima St., Zamboanga City
583 2019 – 2021
584 Secondary (Junior High School)
585 Immaculate Conception Archdiocesan School
586 2015 -2019
587
588 Primary
589 Tugbungan Elementary School
590 2009 – 2015

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591
592 AWARDS AND HONORS
593 With Honors (JHS and SHS)
594
595
596 SKILLS
597  Professional
598  Reliability
599  Integrity
600  Flexibility
601  Communication
602  Time Management
603 KEY STRENGTH AND COMPETENCIES
604  Teamwork
605  Problem-solving
606  Decision Making
607  Delegation
608
609 REFERENCES
610
611
612
613
614
615
616
617
618
619
620
621
622
623
624
625
626
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627
628
629
630
631
632
633
634

635 DANIEL DAVE D. BARRIOS

636 Address: Tetuan Crispin Atilano,
637 Zamboanga City
638 Cellphone number: 09062074149
639 Email: [email protected]
640
641
642
643
644
645 PERSONAL INFORMATION
646 Age : 20
647 Birthdate : November 3, 2002
648 Birthplace : Zamboanga City
649 Gender : Male
650 Civil Status : Single
651 Religion : Roman Catholic
652
653 EDUCATIONAL BACKGROUND
654 Tertiary
655 Bachelor of Science in Nursing – Western Mindanao State University
656 Normal Rd., Baliwasan Zamboanga City
657 August 2021 – Present
658
659 Secondary (Senior High School and Junior High School)
660 Ateneo de Zamboanga University
661 La Purisima St., Zamboanga City
662 2015 – 2021
663
664 Primary
665 Tetuan Central Elementary School
666 2009 – 2015
667
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668 AWARDS AND HONORS

669 With Honors (Elementary and High School)
670
671
672 SKILLS
673  Wound Care
674  Computer Literate
675
676
677 KEY STRENGTH AND COMPETENCIES
678  Adaptability
679  Time Management
680  Teamwork
681
682 REFERENCES
683
684
685
686
687
688
689
690
691
692
693
694
695
696
697
698
699
700
701
702
703
704
705
706
707
708
709
710
711
712
713
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714
715
716
717
718
719
720
721
722
723
724
725
726
727 CAMILLE NICOLE M. ENRIQUEZ
728 Address: Lunzuran, Zamboanga City
729 Cellphone number: 09066679937
730 Email: [email protected]
731
732
733
734
735
736 PERSONAL INFORMATION
737 Age : 20
738 Birthdate : May 10, 2002
739 Birthplace : Zamboanga City
740 Gender : Female
741 Civil Status : Single
742 Religion : Christian
743
744 EDUCATIONAL BACKGROUND
745 Tertiary
746 Bachelor of Science in Nursing – Western Mindanao State University
747 Normal Rd., Baliwasan Zamboanga City
748 August 2021 – Present
749
750 Secondary (Senior High School and Junior High School)
751 Zamboanga Chong Hua High School
752 2015 – 2021
753
754 Primary
755 Zamboanga Chong Hua High School
756 2009 – 2015
757
758 AWARDS AND HONORS

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759 With Honors (Elementary)

760 Region 9 Science Competition - 5th Place
761
762 SKILLS
763  Active listening
764  Time management
765  Critical thinking
766  Adaptability
767
768
769 KEY STRENGTH AND COMPETENCIES
770  Problem solving
771  Communication skills
772  Adaptability
773
774 REFERENCES
775

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