Iran Journal of Nursing

Introduction
Considering the decline in the quality of life (QOL) of parents with children diagnosed with congenital heart disease (CHD), and given their important role in the treatment process, it is necessary to use interventions to address this issue and identify effective solutions. Prior studies have assessed the efficacy of different interventions, reporting different outcomes. To find the appropriate interventions for improving the QOL of these parents, a comprehensive review of these interventions and their comparative analysis is needed. However, we found no review study in this field. Thus, this study aims to review the clinical trials that have designed interventions to improve the QOL in parents of children with CHD.

Methods
This is a scoping review study that was conducted at five steps according to Arksey and O’Malley, which include (a) identifying the research question, (b) identifying relevant studies, (c) selecting eligible studies, (d) charting the data, and (e) collecting, summarizing, and reporting the data. Furthermore, the PRISMA criteria for scoping reviews were employed during the search process. For identification of relevant studies, an extensive search was conducted on national and international databases, including SID, MagIran, PubMed, Scopus, and Web of Science, without any time restrictions. The search was done using the keywords, “Quality of Life”, “Congenital Heart Disease”, and “Parents” in Persian and English using the Boolean operators AND and OR.

Results
In the initial search, 207 articles were identified. After eliminating duplicates, 145 remained. After reading their titles and abstracts, 6 articles were finally selected for the review. All articles were in English, and their study were from 2014 to 2021. Their sample sizes ranged from 56 to 219. Of 6 reviewed articles, 3 were conducted in China, one in the United States, one in the Netherlands, and one in Iran, focusing on designing interventions to enhance the QOL for parents of children with CHD. The majority of studies reported that the interventions were effective in improving the QOL for parents. The type of interventions in three articles was online educational program using WhatsApp. In one study, face-to-face educational sessions were used. In one study, the intervention included telehealth home monitoring using email, video conferences, SMS, or phone calls, but it did not result in an improvement in parental QOL. In another study, a psychosocial intervention in a one-day group format was conducted. The intervention was provided after the child’s birth and after the first surgery, but it did not lead to an improvement in parental QOL. The assessment tools for the QOL included the 36-item short-form health survey (SF-36), the World Health Organization Quality of Life - brief version (WHOQOL-BREF), and the Ulm Quality of Life Inventory for Parents (ULQIE).

Conclusion
The review of previous studies indicated that the educational interventions provided online or face-to-face, can improve the QOL of parents with CHD children. Implementing psychosocial interventions before surgical procedures can be more effective in improving parental QOL, and it is recommended not to postpone them until after the surgery. There are few studies on improving the QOL for parents of children with CHD, and most of them have focused on using educational interventions. Therefore, it is recommended to conduct more studies in this field.

Ethical Considerations
Compliance with ethical guidelines
This study has an ethical approval from the ethics committee of Tehran University of Medical Sciences (Code: IR.TUMS.CHMC.REC.1402.085). This is a review study and does not involve the use of animal or human samples. 

Funding
This study was extracted from a master’s thesis in pediatric nursing at Tehran University of Medical Sciences. This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. 

Authors' contributions
Conceptualization: Mohammad Mehdi Rajabi; Data extraction: Mohammad Mehdi Rajabi, Jamaloddin Begjani; Supervising the process of data extraction: Reza Negarande; Final draft approval: All authors.

Conflict of interest
The authors declare no conflict of interest.

Acknowledgments
The would like to thank the Vice-Chancellor for Research, the Research Ethics Committee, and the officials of the Information Technology Unit, and the Library of the Faculty of Nursing and Midwifery at Tehran University of Medical Sciences.


References

1. Marcdante K, Kliegman RM. Nelson essentials of pediatrics.      Amsterdam: Elsevier Health Sciences; 2018. [Link]
2. Lopes S, Guimarães ICB, Costa SFO, Acosta AX, Sandes KA, Mendes CMC. Mortality for critical congenital heart diseases and associated risk factors in newborns. A Cohort Study. Arq Bras Cardiol. 2018; 111(5):666-73. [DOI:10.5935/abc.20180175]
3. Maya S, Gunawijaya E, Yantie NV, Windiani IT. Growth, development, and quality of life in children with congenital heart disease children. Open Access Maced J Med Sci. 2020; 8(B):613-8. [Link]
4. Fielding D, Duff A. Compliance with treatment protocols: Interventions for children with chronic illness. Arch Dis Child. 1999; 80(2):196-200.  [DOI:10.1136/adc.80.2.196] [PMID]   
5. Luyckx K, Missotten L, Goossens E, Moons P; i-DETACH Investigators. Individual and contextual determinants of quality of life in adolescents with congenital heart disease. J Adolesc Health. 2012; 51(2):122-8. [DOI:10.1016/j.jadohealth.2011.11.007] [PMID]
6. Goldbeck L, Melches J. Quality of life in families of children with congenital heart disease. Qual Life Res. 2005; 14(8):1915-24.  [DOI:10.1007/s11136-005-4327-0] [PMID]
7. Sileshi L, Tefera E. Health-related quality of life of mothers of children with congenital heart disease in a sub-Saharan setting: Cross-sectional comparative study. BMC Res Notes. 2017; 10(1):513.  [DOI:10.1186/s13104-017-2856-6] [PMID]   
8. Arafa MA, Zaher SR, El-Dowaty AA, Moneeb DE. Quality of life among parents of children with heart disease. Health Qual Life Outcomes. 2008; 6:91. [DOI:10.1186/1477-7525-6-91] [PMID]   
9. Azhar AS, AlShammasi ZH, Higgi RE. The impact of congenital heart diseases on the quality of life of patients and their families in Saudi Arabia. Biological, psychological, and social dimensions. Saudi Med J. 2016; 37(4):392-402. [DOI:10.15537/smj.2016.4.13626] [PMID]   
10. Gregory MRB, Prouhet PM, Russell CL, Pfannenstiel BR. Quality of life for parents of children with congenital heart defect: A systematic review. J Cardiovasc Nurs. 2018; 33(4):363-71.  [DOI:10.1097/JCN.0000000000000466] [PMID]
11. Medoff Cooper B, Marino BS, Fleck DA, Lisanti AJ, Golfenshtein N, Ravishankar C,  et al. Telehealth home monitoring and postcardiac surgery for congenital heart disease. Pediatrics. 2020; 146(3):e20200531.  [DOI:10.1542/peds.2020-0531] [PMID]   
12. Edraki M, Kamali M, Beheshtipour N, Amoozgar H, Zare N, Montaseri S. The effect of educational program on the quality of life and self-efficacy of the mothers of the infants with congenital heart disease: a randomized controlled trial. Int J Community Based Nurs Midwifery. 2014; 2(1):51-9. [PMID]  
13. Zhang QL, Lei YQ, Liu JF, Cao H, Chen Q. Using telemedicine to improve the quality of life of parents of infants with CHD surgery after discharge. Int J Qual Health Care. 2021; 33(3):mzab133. [DOI:10.1093/intqhc/mzab133] [PMID]
14. Arksey H, O'Malley L. Scoping studies: Towards a methodological framework. Int J Soc Res Method. 2005; 8(1):19-32. [DOI:10.1080/1364557032000119616]
15. Tricco AC, Lillie E, Zarin W, O'Brien KK, Colquhoun H, Levac D,  et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and explanation. Ann Intern Med. 2018; 169(7):467-73.  [DOI:10.7326/M18-0850] [PMID]
16. van der Mheen M, Meentken MG, van Beynum IM, van der Ende J, van Galen E, Zirar A, et al. CHIP-Family intervention to improve the psychosocial well-being of young children with congenital heart disease and their families: Results of a randomised controlled trial. Cardiol Young. 2019; 29(9):1172-82.  [DOI:10.1017/S1047951119001732] [PMID]
17. Yang B, Liu JF, Xie WP, Cao H, Chen Q. The effects of WeChat follow-up management to improve the parents' mental status and the quality of life of premature newborns with patent ductus arteriosus. J Cardiothorac Surg. 2021; 16(1):235. [DOI:10.1186/s13019-021-01617-5] [PMID]   
18. Zhang QL, Xu N, Huang ST, Cao H, Chen Q. WeChat-assisted pre-operative health education improves the quality of life of parents of children with ventricular septal defects: A prospective randomised controlled study. J Paediatr Child Health. 2021; 57(5):664-9.  [DOI:10.1111/jpc.15307] [PMID]
19. Sabeti F, Safarkhanlo M, Abaszadeh R, Haghani S, Aliakbari M. [The effect of discharge planning on quality of life in mothers of children with congenital heart disease undergoing surgery (Persian)]. J Hayat. 2021; 27(4):348-60. [Link]
20. Ramezankhani A, Heydarabadi AB, Ghaffari M, Mehrabi Y, Kazemi S. Features of a health-oriented education program during daily commutes: A qualitative study.Electron Physician. 2016 5; 8(6):2515-23.  [DOI:10.19082/2515] [PMID]   
21. Demianczyk AC, Bechtel Driscoll CF, Karpyn A, Shillingford A, Kazak AE, Sood E. Coping strategies used by mothers and fathers following diagnosis of congenital heart disease. Child Care Health Dev. 2022; 48(1):129-38. [DOI:10.1111/cch.12913] [PMID]   
22. Hancock HS, Pituch K, Uzark K, Bhat P, Fifer C, Silveira M, et al. A randomised trial of early palliative care for maternal stress in infants prenatally diagnosed with single-ventricle heart disease. Cardiol Young. 2018; 28(4):561-70.  [DOI:10.1017/S1047951117002761] [PMID]
23. Kolaitis GA, Meentken MG, Utens EMWJ. Mental health problems in parents of children with congenital heart disease. Front Pediatr. 2017; 5:102. [DOI:10.3389/fped.2017.00102] [PMID]  
24. Gramszlo C, Karpyn A, Demianczyk AC, Shillingford A, Riegel E, Kazak AE, et al. Parent perspectives on family-based psychosocial interventions for congenital heart disease. J Pediatr. 2020; 216:51-57.e2. [DOI:10.1016/j.jpeds.2019.09.059] [PMID]   
25. Singer S, Kojima E, Deppisch L, Taylor K, Wickert M, Riedel P, et al. What is the best time for psychosocial counselling from the perspective of cancer patients and their relatives? A multi-centre qualitative study. Couns Psychother Res. 2022; 22(3):558-68.  [Link]

26. Eccleston C, Fisher E, Law E, Bartlett J, Palermo TM. Psychological interventions for parents of children and adolescents with chronic illness. Cochrane Database Syst Rev. 2015; 4(4):CD009660. [PMID]
27. Begjani J, Negarandeh R, Haghani S, Rajabi MM. [Design, implementation, and evaluation of an educational mobile application for home care after surgery of pediatrics with congenital heart disease: A protocol study (Persian)]. Iran J Nurs. 2023; 36(142):212-25. [Link]