Perceptions on support, challenges and needs among parents and caregivers of children with developmental disabilities in Croatia, North Macedonia and Serbia: a cross-sectional study.


Journal

BMC pediatrics
ISSN: 1471-2431
Titre abrégé: BMC Pediatr
Pays: England
ID NLM: 100967804

Informations de publication

Date de publication:
03 May 2024
Historique:
received: 05 07 2023
accepted: 16 04 2024
medline: 4 5 2024
pubmed: 4 5 2024
entrez: 3 5 2024
Statut: epublish

Résumé

Parents/caregivers of children with developmental disabilities (CDD) have a wide range of support needs and there are various interventions available. Support, challenges, and needs among parents/caregivers of CDD likely vary in different geographical settings. This study aimed to analyze the perceptions of support, challenges, and needs among parents/caregivers of CDD in Croatia, North Macedonia, and Serbia. We conducted a cross-sectional study in March-April 2023 within the Erasmus + SynergyEd project. The eligible participants were parents and caregivers of CDD in Croatia, North Macedonia, and Serbia, who filled out a modified Caregiver Needs Survey online. Among 953 participants, 542 (57%) were from Croatia, 205 (21%) were from North Macedonia and 206 (22%) were from Serbia. The most common diagnosis of participants' children was autism spectrum disorder (26%). The child most often received the first diagnosis at the median of 2 years, diagnosed by a team of professionals. More than half (58%) of children attended preschool and public school, while 22% did not attend any schooling. Additional support from the state/city/county was received by 66% of CDD. Most participants declared not participating in association/organization for family support. Participants mostly (68%) used experts who work with the child as a source of information about their child's condition, followed by the Internet (53%). In the last 12 months, 60% of participants had difficulties with the availability of services in their area or problems getting appointments. The biggest problem in getting support was ensuring the child's basic rights were protected. Participants stated that ensuring greater rights for CDD was the greatest need for their families. Parents/caregivers of CDD in Croatia, North Macedonia, and Serbia faced multiple challenges, but most of them were satisfied with the services provided to their children. Future efforts to develop policies and services related to CDD should consider the opinions of their parents/caregivers and disparities in access to services.

Sections du résumé

BACKGROUND BACKGROUND
Parents/caregivers of children with developmental disabilities (CDD) have a wide range of support needs and there are various interventions available. Support, challenges, and needs among parents/caregivers of CDD likely vary in different geographical settings. This study aimed to analyze the perceptions of support, challenges, and needs among parents/caregivers of CDD in Croatia, North Macedonia, and Serbia.
METHODS METHODS
We conducted a cross-sectional study in March-April 2023 within the Erasmus + SynergyEd project. The eligible participants were parents and caregivers of CDD in Croatia, North Macedonia, and Serbia, who filled out a modified Caregiver Needs Survey online.
RESULTS RESULTS
Among 953 participants, 542 (57%) were from Croatia, 205 (21%) were from North Macedonia and 206 (22%) were from Serbia. The most common diagnosis of participants' children was autism spectrum disorder (26%). The child most often received the first diagnosis at the median of 2 years, diagnosed by a team of professionals. More than half (58%) of children attended preschool and public school, while 22% did not attend any schooling. Additional support from the state/city/county was received by 66% of CDD. Most participants declared not participating in association/organization for family support. Participants mostly (68%) used experts who work with the child as a source of information about their child's condition, followed by the Internet (53%). In the last 12 months, 60% of participants had difficulties with the availability of services in their area or problems getting appointments. The biggest problem in getting support was ensuring the child's basic rights were protected. Participants stated that ensuring greater rights for CDD was the greatest need for their families.
CONCLUSION CONCLUSIONS
Parents/caregivers of CDD in Croatia, North Macedonia, and Serbia faced multiple challenges, but most of them were satisfied with the services provided to their children. Future efforts to develop policies and services related to CDD should consider the opinions of their parents/caregivers and disparities in access to services.

Identifiants

pubmed: 38702636
doi: 10.1186/s12887-024-04770-7
pii: 10.1186/s12887-024-04770-7
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

297

Informations de copyright

© 2024. The Author(s).

Références

McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck PW, et al. A new definition of children with special health care needs. Pediatrics. 1998;102(1 Pt 1):137–40.
doi: 10.1542/peds.102.1.137 pubmed: 9714637
Ni’matuzahroh, Suen MW, Ningrum V, Widayat, Yuniardi MS, Hasanati N et al. The Association between parenting stress, positive Reappraisal Coping, and quality of life in parents with Autism Spectrum disorder (ASD) children: a systematic review. Healthc (Basel). 2021;10(1).
Staunton E, Kehoe C, Sharkey L. Families under pressure: stress and quality of life in parents of children with an intellectual disability. Ir J Psychol Med. 2023;40(2):192–9.
doi: 10.1017/ipm.2020.4 pubmed: 32106892
Arif A, Ashraf F, Nusrat A. Stress and coping strategies in parents of children with special needs. J Pak Med Assoc. 2021;71(5):1369–72.
doi: 10.47391/JPMA.1069 pubmed: 34091616
Caicedo C. Families with special needs children: family health, functioning, and care burden. J Am Psychiatr Nurses Assoc. 2014;20(6):398–407.
doi: 10.1177/1078390314561326 pubmed: 25428686
Hagerman TK, McKernan GP, Carle AC, Yu JA, Stover AD, Houtrow AJ. The Mental and Physical Health of Mothers of Children with Special Health Care Needs in the United States. Matern Child Health J. 2022;26(3):500–10.
doi: 10.1007/s10995-021-03359-1 pubmed: 35072870
UNESCO. 2021. Central and Eastern Europe, Caucasus and Central Asia Report - Inclusion and Education: All Means All. Global Education Monitoring Report. https://en.unesco.org/gem-report/Eurasia2021inclusion
Bahdanovich Hanssen N, Erina I. Parents’ views on inclusive education for children with special educational needs in Russia. Eur J Special Needs Educ. 2022;37(5):761–75.
doi: 10.1080/08856257.2021.1949092
Murray E, McFarland-Piazza L, Harrison LJ. Changing patterns of parent–teacher communication and parent involvement from Preschool to School. Early Child Dev Care. 2015;185(7):1031–52.
doi: 10.1080/03004430.2014.975223
Falkmer M, Anderson MK, Joosten A, Falkmer T. Parents’ perspectives on inclusive schools for children with Autism Spectrum conditions. Int J Disabil Dev Educ. 2015;62:1–23.
doi: 10.1080/1034912X.2014.984589
Grenier-Martin J, Rivard M. Managing challenging behaviors at home without services: the perspective of parents having Young children with intellectual and developmental disability. J Dev Phys Disabil. 2022;34(2):373–97.
doi: 10.1007/s10882-021-09804-x
Wang M, Singer HHS. January. Supporting families of children with developmental disabilities: evidence based and emerging practices. New York: Oxford University Press. 2016. Edition: 1st. Publisher: Oxford University Press. ISBN: 978-0-974307-0. 2016.
Papoudi D, Jørgensen CR, Guldberg K, Meadan H. Perceptions, experiences, and needs of parents of culturally and linguistically diverse children with autism: a scoping review. Rev J Autism Dev Disorders. 2021;8(2):195–212.
doi: 10.1007/s40489-020-00210-1
Elangkovan IT, Shorey S. Experiences and needs of parents caring for children with cerebral palsy: a systematic review. J Dev Behav Pediatr. 2020;41(9):730–9.
doi: 10.1097/DBP.0000000000000880 pubmed: 33136702
Eysenbach G. Improving the quality of web surveys: the Checklist for reporting results of internet E-Surveys (CHERRIES). J Med Internet Res. 2004;6(3):e34.
doi: 10.2196/jmir.6.3.e34 pubmed: 15471760 pmcid: 1550605
Bradshaw S, Bem D, Shaw K, Taylor B, Chiswell C, Salama M, et al. Improving health, wellbeing and parenting skills in parents of children with special health care needs and medical complexity - a scoping review. BMC Pediatr. 2019;19(1):301.
doi: 10.1186/s12887-019-1648-7 pubmed: 31470820 pmcid: 6716943
Pejovic-Milovancevic M, Stankovic M, Mitkovic-Voncina M, Rudic N, Grujicic R, Herrera AS, et al. Perceptions on support, challenges and needs among parents of children with autism: the Serbian experience. Psychiatr Danub. 2018;30(Suppl 6):354–64.
pubmed: 30235173
Neergaard MA, Olesen F, Andersen RS, Sondergaard J. Qualitative description - the poor cousin of health research? BMC Med Res Methodol. 2009;9:52.
doi: 10.1186/1471-2288-9-52 pubmed: 19607668 pmcid: 2717117
UNESCO. The 2015 Global Monitoring Report – Education for All 2000–2015: Achievements and Challenges. https://www.unesco.org/gem-report/en/efa-achievements-challenges
Soriano V, Watkins A, Ebersold S. Inclusive education for learners with disabilities. European Agency for Special Needs and Inclusive Education. https://www.europarl.europa.eu/RegData/etudes/STUD/2017/596807/IPOL_STU(2017)596807_EN.pdf . 2017.
Zhang D, Kaufmann WE, Sigafoos J, Bartl-Pokorny KD, Krieber M, Marschik PB, et al. Parents’ initial concerns about the development of their children later diagnosed with fragile X syndrome. J Intellect Dev Disabil. 2017;42(2):114–22.
doi: 10.3109/13668250.2016.1228858 pubmed: 29875616
Kishore MT, Basu A. Early concerns of mothers of children later diagnosed with autism: implications for early identification. Res Autism Spect Dis. 2011;5(1):157–63.
doi: 10.1016/j.rasd.2010.03.005
Boulton KA, Hodge MA, Jewell A, Ong N, Silove N, Guastella AJ. Diagnostic delay in children with neurodevelopmental conditions attending a publicly funded developmental assessment service: findings from the Sydney Child Neurodevelopment Research Registry. BMJ Open. 2023;13(2):e069500.
doi: 10.1136/bmjopen-2022-069500 pubmed: 36725093 pmcid: 9896183
Stankovic M, Stojanovic A, Jelena S, Stankovic M, Shih A, Stankovic S. The Serbian experience of challenges of parenting children with autism spectrum disorders during the COVID-19 pandemic and the state of emergency with lockdown. Eur Child Adolesc Psychiatry. 2022;31(4):693–8.
doi: 10.1007/s00787-021-01917-0 pubmed: 34837543
Baumann I, Jaks R, Robin D, Juvalta S, Dratva J. Parents’ health information seeking behaviour - does the child’s health status play a role? BMC Fam Pract. 2020;21(1):266.
doi: 10.1186/s12875-020-01342-3 pubmed: 33302881 pmcid: 7730778
Lockwood Estrin G, Bhavnani S, Arora R, Gulati S, Divan G. Caregiver perceptions of Autism and Neurodevelopmental disabilities in New Delhi, India. Int J Environ Res Public Health. 2023;20(7).
Huus K, Olsson LM, Elgmark Andersson E, Granlund M, Augustine L. Perceived needs among parents of children with a mild intellectual disability in Sweden. Scandinavian J Disabil Res. 2017;19(4):307–17.
doi: 10.1080/15017419.2016.1167773
Niedbalski J. (Extra) ordinary parenting: parents of children with disabilities in the context of disability stigma and pride. J Intellect Disabil. 2022:17446295221100037.
Lucic L. Parents of children with developmental difficulties and parents of typically developed children: what happens in a year? Behav Sci (Basel). 2019;10(1).
Resch JA, Mireles G, Benz MR, Grenwelge C, Peterson R, Zhang D. Giving parents a voice: a qualitative study of the challenges experienced by parents of children with disabilities. Rehabil Psychol. 2010;55(2):139–50.
doi: 10.1037/a0019473 pubmed: 20496968
Woodgate RL, Ateah C, Secco L. Living in a world of our own: the experience of parents who have a child with autism. Qual Health Res. 2008;18(8):1075–83.
doi: 10.1177/1049732308320112 pubmed: 18650563
Fu W, Li R, Zhang Y, Huang K. Parenting stress and parenting efficacy of parents having children with disabilities in China: the role of Social Support. Int J Environ Res Public Health. 2023;20(3).
Celebic E, Memisevic H. Exploring the parental experiences in the media: a qualitative analysis of Articles Written by parents of children with autism in Bosnia and Herzegovina. J Health Rehabilitation Sci. 2023;2(1):73–81.
Barokova MD, Andreeva-Sapundzhieva A, Andonova E, Markova-Derelieva G, Karpur A. Diagnostic paths and service needs of children with autism spectrum disorder and with other neurodevelopmental disorders in Bulgaria. Front Psychiatry. 2022;13:937516.
doi: 10.3389/fpsyt.2022.937516 pubmed: 36620686 pmcid: 9814010
Asa GA, Fauk NK, Mwanri L, Ward PR. Understanding barriers to the Access to Healthcare and Rehabilitation Services: a qualitative study with mothers or female caregivers of children with a disability in Indonesia. Int J Environ Res Public Health. 2021;18(21).
Kingsdorf S, Pančocha K. Looking at Europe’s recent behavioral telehealth practices for children and families impacted by neurodevelopmental disabilities. Int J Dev Disabil. 2023;69(2):147–62.
doi: 10.1080/20473869.2021.1925403 pubmed: 37025332
Hosley SNS. Challenges to Telehealth: what was learned from families of children with Neurodevelopmental disorders. Nurs Clin North Am. 2022;57(3):315–28.
doi: 10.1016/j.cnur.2022.04.001 pubmed: 35985722 pmcid: 9381067

Auteurs

Jelena Međaković (J)

Centre for Evidence-Based Medicine and Health Care, Catholic University of Croatia, Ilica 242, Zagreb, 10000, Croatia.

Antonia Čivljak (A)

Institute of Emergency Medicine of Zagreb County, Velika Gorica, Zagreb, Croatia.

Tatjana Zorčec (T)

University Children's Hospital Medical Faculty, Skopje, North, Macedonia.

Vesna Vučić (V)

Centre of Research Excellence in Nutrition and Metabolism, Group for Nutritional Biochemistry and Dietology, Institute for Medical Research, National Institute of the Republic of Serbia, University of Belgrade, Belgrade, Serbia.

Danijela Ristić-Medić (D)

Centre of Research Excellence in Nutrition and Metabolism, Group for Nutritional Biochemistry and Dietology, Institute for Medical Research, National institute of Republic of Serbia, University of Belgrade, Belgrade, Serbia.

Aleksandra Veselinović (A)

Cognitive Neuroscience Department, Research and Development Institute "Life Activities Advancement Centre", Belgrade, 11000, Serbia.

Marta Čivljak (M)

Centre for Evidence-Based Medicine and Health Care, Catholic University of Croatia, Ilica 242, Zagreb, 10000, Croatia.

Livia Puljak (L)

Centre for Evidence-Based Medicine and Health Care, Catholic University of Croatia, Ilica 242, Zagreb, 10000, Croatia. livia.puljak@gmail.com.

Articles similaires

[Redispensing of expensive oral anticancer medicines: a practical application].

Lisanne N van Merendonk, Kübra Akgöl, Bastiaan Nuijen
1.00
Humans Antineoplastic Agents Administration, Oral Drug Costs Counterfeit Drugs

Smoking Cessation and Incident Cardiovascular Disease.

Jun Hwan Cho, Seung Yong Shin, Hoseob Kim et al.
1.00
Humans Male Smoking Cessation Cardiovascular Diseases Female
Humans United States Aged Cross-Sectional Studies Medicare Part C
1.00
Humans Yoga Low Back Pain Female Male

Classifications MeSH