EMOTIONAL EXPERIENCES AND SOCIAL CHALLENGES OF OROFACIAL CLEFT IN RURAL SUB-SAHARAN AFRICA: A QUALITATIVE INTERPRETIVIST APPROACH

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A.O. Taiwo^1,4, U. Lehmann², V. Scott², U. Abdulmajid³, A.A. Ibikunle⁴, R.O. Braimah^1,4, B. Mujtaba^1,4, S.A. Isah⁵, A.B. Abubakar⁵, M.E. Ogbeide⁴, S. Labbo-Jadadi⁶, O.I. Adigun⁷, B.O. Ile-Ogendegbe⁸, M.F. Abdullahi⁶, J. Rufai⁴, G.U. Ndubuizu⁴, L.A. Yekini⁴, K. AbdulAzeez⁴, L.A. Olayemi⁸, S.A. Fawa⁴, L.G. Suleman⁹

1. Department of Oral and Maxillofacial Surgery, Faculty of Dental Sciences, College of Health Science, Usmanu Danfodiyo University, Sokoto, Nigeria.
2. School of Public Health, University of Western Cape, Cape town, South Africa.
3. Department of Otolaryngology/Ear Nose Throat (ENT), Usmanu Danfodiyo University Teaching Hospital, Sokoto, Nigeria.
4. Department of Dental and Maxillofacial Surgery, Usmanu Danfodiyo University Teaching Hospital, Sokoto, Nigeria.
5. Noma Children Hospital, Sokoto, Nigeria.
6. Department of Dental and Maxillofacial Surgery, Sir Yahyah Memorial Hospital, Birnin-Kebbi, Kebbi, Nigeria.
7. Department of Dental and Maxillofacial Surgery, Federal Medical Centre, Gusau, Zamfara, Nigeria.
8. Department of Dental and Maxillofacial Surgery, Federal Medical Centre, Birnin-Kebbi, Kebbi Nigeria.
9. Department of Family Medicine, Usmanu Danfodiyo University Teaching Hospital, Sokoto, Nigeria.

Abstract

Background: Orofacial Cleft (OFC) is the predominant congenital facial malformation with an incidence of 1 in 600-700 for every live birth. This unexpected condition often provokes adverse emotional and social reactions from the families and the larger society. OFC optimal management require extensive parental care such as feeding coupled with multiple complex medical, surgical and dental treatment needs which; thus, imposed further strain on the mothers and family carers. Sadly, OFC impacts negatively on many families in rural sub-Saharan African communities signaling an urgent imperative to address this as a public health policy emergency. However, there is scant qualitative data regarding this problem in rural northwest Nigeria. The purpose of this study was to explore the psychosocial lived experiences of family carers of children with OFC in the northwest, Nigeria.

Materials and Method: Twenty-two participants from four collaborating tertiary specialised hospitals in northwest Nigeria were recruited into the study between 2017 and 2020. Semi-structured in-depth interviews were conducted and inductive thematic analysis of verbatim transcribed textual data was utilized.

Results: The participants were largely from rural farming districts; mothers constituted more than three-quarters of the participants (n=15). Three major themes emerged: emotional experiences, social challenges and the support system. The study identified covert discrimination and negative stereotypes of children with OFC were identified.

Conclusion: The study findings showed that mothers were emotionally and
socially more impacted by OFC.

Keywords: Qualitative study, Orofacial cleft, Prenatal diagnosis, Psychosocial, Stigma, Sub-Saharan

Introduction

Worldwide, normal facial appearance is expected and taken for granted in the birth of newborn.¹ Thus, the occurrence of any congenital facial anomaly is sensitive and often provokes myriad of serious social and emotional trauma. ^2-4 Orofacial cleft (OFC) encompassing cleft lip, cleft palate and cleft lip/palate is the predominant hereditary craniofacial malformation worldwide.⁵ It has a global incidence of 1 in 600-700 for every live birth with prevalence of 1 in 500 (Asian), 1/1000 (Caucasian) and 1 in 2500 (African) respectively.^6,7

The numerous health/nutritional needs and heavy financial challenges of taken care of children with OFC coupled with multiple treatment appointments imposed enormous emotional and social distress on their carers and families.^7,8 These stressors could result in poor uptake of cleft treatment leading to delay in surgical management in poor vulnerable communities.^8,9,10

Pre-natal diagnosis detection of OFC has been shown to preempt this adverse emotional burden by early initiation of counselling and treatment planning. Sadly, recent studies from developing countries suggest nonavailability of this service with late diagnosis of these anomalies worsening the heavy psychosocial load of those caring for these children.^1-5,10 In resource challenged health systems of sub-Saharan Africa (SSA) scarce manpower, finance and facilities have been geared toward surgical correction of these abnormalities at the detriment of the enormous psychosocial burden of OFC on the mothers and their families.^1,11-15 Therefore, highlighting the intricacies of the emotional and social trauma experienced by mothers and families caring for children with OFC in this region could pave way for more holistic management, judicious use of resources, better treatment outcomes and optimal rehabilitation.

The flexible approach of qualitative method could help to comprehend the diverse day to day psychosocial experiences of persons dealing with OFC. ^16,17 Unfortunately, there are scarce qualitative studies in this direction from remote rural northwest Nigeria. Therefore, the purpose of this study was to explore the psychosocial lived experiences of family carers of children with OFC in the northwest of Nigeria.

MATERIALS AND METHODS
The study was performed in the cleft clinics of four collaborating networks of tertiary hospitals with combined bed capacity of over 2000 located in extreme northwest Nigeria comprising of Sokoto, Kebbi, Zamfara and Katsina sharing boundaries with neighboring country of Niger. The area is largely rural with arid climate and agrarian including small scale farming and nomadic cattle rearing.

This was an exploratory qualitative study based on constructivist phenomenological theory that ensured authentic engagement with the research participants and a real world understanding of their lived experiences. Thus, facilitating deep exploration and gathering of rich data will help to comprehend their emotional and social needs when caring for children with OFC.^17,18

Twenty-two carers who met the study inclusion criteria consented and were recruited into the study by purposive sampling from the participating cleft centres. They were required to be mothers or relatives providing primary care for children diagnosed with OFC. Furthermore, they must be fluent, and comfortable being interviewed in the native language of “Hausa” or English and possesses no major psychiatric disorder that might interfere with their ability to participate in qualitative interview or adhere to the study protocol. This ensured that credible textual data were gathered and pursued to the point of saturation.¹⁹

All the participants were native speaker of “Hausa” and so face-to-face in-depth interview were conducted in this language by the principal researcher (TAO) in conjunction with two other researchers; IS & SJ (native Hausa speaker and proficient in English) utilizing a semi-structured interview guide developed by TAO.²⁰ The guiding questions apart from demographics were tailored towards the study objectives and constructed based on literature review on the subjects and previous experiences in OFC management in the region. This included the following:
1.Have you encountered or heard about this condition before?
2.Can you tell us what impact this condition had on your life?
3.Can you tell us how people in your society reacted to this
condition?
4.Are there any other insights you think we should know regarding your experiences with this condition?

Flexibility was adopted which helped to adapt questions based on the responses of the interviewees; the interviews transited from structured format to a more unstructured format.^19,20 As interesting information arises, follow up open ended questions was used as arsenals to probe participants’ answers in-depth as the interview progresses. Clarification on any area that is unclear was easily sought during the interview. Confidentiality and privacy were actualised by conducting the interviews in an ambient secluded consulting office during their visit to the hospital. Displaying personal sentiments that might unwittingly compromise the participants was avoided.^21,22 The interviews were audio-tape recorded with the participants’ consent and ranged from 35-45 minutes. Data collection ceased following attainment of data saturation when no new themes or ideas emanated from the interviews.

Descriptive statistics were used to summarize the participants’ sociodemographic data using Microsoft excel. Following verbatim transcription, translation to English, and back transcription to Hausa of the recorded data by two members of the research (SGL and UA). Data familiarization via several readings of the English translations, followed by thematic data analysis by inductive process in which relevant themes emerged from categories and patterns were performed by TAO and LU.²³ Every process was scrutinized thoroughly by the rest of the research team to confirm that the conclusions reached closely mirrored the participants’ views. Differences at all stages were resolved by intense engagement and dialogue until concordance was arrived at.

Credibility, dependability and confirmability of the study were ensured by clear adherence to key objectives of qualitative research, the approved study protocol, method of data analysis, triangulation, reflexivity, attention to negative cases, fair dealing, and giving voices to wide perspectives. Member checking with the participants to see that their response was accurately captured and the findings reflect their views.^24,25 Trustworthiness was achieved by familiarity with the study setting, member checking content accuracy with the participants during the interviews; reflexivity and joint comparison of the data and results among the researchers.^17,24,25 Moreover, detailed information about the entire study and exposition of the participants’ emotional journeys were made available to enable other researchers to make inferences on the transferability of the study findings to their own settings.

Ethical approval for the study was obtained from the University of Western Cape Higher Degrees Research Ethics Committee (130416-050) and Usmanu Danfodiyo University Teaching Hospital (UDUTH) Health Research and Human Ethics Committee (HREC). Involvement in the study was voluntary as verbal explanation was mandatory. A participant information sheet containing critical information regarding the study in both Hausa and English was made available to all participants before the procurement of written informed consent and study commencement.²⁶ Research protocols, procedures and reporting were tailored to the Consolidated Criteria for Reporting Qualitative Study (COREQ).²⁷