Challenges and Concerns Faced by Parents of Children With Cleft Lip and/or Palate

NCT05730946 | Completed

• 1 other identifier: 1137
• Study Type: observational
• Target: 12
• Locations: 1 country
• Sites: 1

Brief Summary

Cleft lip and/or palate (CLP) are the most common oro-facial congenital anomalies. These anomalies have an impact on feeding, speech and speech development, facial aesthetics \& oral health, all of which are factors that heavily impact the quality of life of CLP patients. CLP also has an effect on the families' social and psychological health. Qualitative research helps understand the perspectives of the participants by exploring the psycho-social aspects of care. Phenomenological approach is a qualitative research method that aims to borrow participants' lived experiences to better understand a specific phenomenon. Currently, there is no clear understanding of the fears, anxieties, and challenges faced by parents of CLP patients in Egypt.

Conditions

Cleft Lip and Palate

Keywords

Cleft Lip and Palate; Challenges; Concerns

Outcome Measures

Primary Outcomes (1)

• Challenges & concerns faced by the parents of CLP patients

  The tool of measurement in the present qualitative study is In-depth interviews utilizing an interview guide (questionnaire). The recorded interviews will be transcribed by one of the authors after which thematic data analysis will be conducted. Codes will be developed by two researchers individually and intercoder meetings will held to encourage intercoder reliability.

  1 year

Study Arms (1)

Egyptian parents of cleft lip and/ or palate (CLP) patients

Egyptian parents of CLP patients presented to the cleft lip \& palate clinic at Ain Shams university.

Diagnostic Test: Interview- based questionnaire

Interventions

Interview- based questionnaire DIAGNOSTIC_TEST

Interview-based questionnaire by the use of an interview guide to explore and understand the Challenges faced in the past and the concerns for the future experienced by parents of CLP patients.

Egyptian parents of cleft lip and/ or palate (CLP) patients

Eligibility Criteria

• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Egyptian parents of CLP patients presented to cleft lip \& palate clinic at Ain Shams university.

You may qualify if:

• Parents of Patients with non-syndromic CLP.

You may not qualify if:

• Parents of Patients presenting with dental pain.

Sponsors & Collaborators

• Ain Shams University: lead

Study Sites (1)

Faculty of Dentistry, Ain Shams University

Cairo, 11566, Egypt

Location

Related Publications (6)

• Johansson B, Ringsberg KC. Parents' experiences of having a child with cleft lip and palate. J Adv Nurs. 2004 Jul;47(2):165-73. doi: 10.1111/j.1365-2648.2004.03075.x.

  PMID: 15196190 BACKGROUND

• Ghirotto L, De Panfilis L, Di Leo S. Health professionals learning qualitative research in their workplace: a focused ethnography. BMC Med Educ. 2020 Aug 17;20(1):269. doi: 10.1186/s12909-020-02191-5.

  PMID: 32807161 BACKGROUND

• Baker C, Wuest J, Stern PN. Method slurring: the grounded theory/phenomenology example. J Adv Nurs. 1992 Nov;17(11):1355-60. doi: 10.1111/j.1365-2648.1992.tb01859.x.

  PMID: 1430643 BACKGROUND

• Hennink M, Kaiser BN. Sample sizes for saturation in qualitative research: A systematic review of empirical tests. Soc Sci Med. 2022 Jan;292:114523. doi: 10.1016/j.socscimed.2021.114523. Epub 2021 Nov 2.

  PMID: 34785096 BACKGROUND

• Turner DW. Qualitative interview design: A practical guide for novice investigators. Qual Rep. 2010;15(3):754-60.

  BACKGROUND

• Elmouden L, Elgasmi F, Ousehal L. Quality of Life in Adolescents with Cleft Lip and Palate. In: Gülşen A, editor. Current Treatment of Cleft Lip and Palate. 2020.

  BACKGROUND

MeSH Terms

Conditions

Cleft Lip

Condition Hierarchy (Ancestors)

Lip Diseases; Mouth Diseases; Stomatognathic Diseases; Mouth Abnormalities; Stomatognathic System Abnormalities; Congenital Abnormalities; Congenital, Hereditary, and Neonatal Diseases and Abnormalities

Study Officials

• Nagwa Mohamed Ali, Prof of PD

  Ain Shams University

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Assistant Lecturer at Pediatric Dentistry and Dental Public Health Department, Faculty of Dentistry

Study Record Dates

• First Submitted: February 2, 2023
• First Posted: February 16, 2023
• Study Start: July 7, 2022
• Primary Completion: July 30, 2023
• Study Completion: July 30, 2023
• Last Updated: September 6, 2023

Record last verified: 2023-09

Data Sharing

• IPD Sharing: Will not share

Locations

EG (1)