Expectations of Caregivers of Patients with Cleft Lip and Palate Attending the Cleft Clinic of KATH for the First Time ()
1. Introduction
Cleft lip and palate are among the most prevalent congenital malformations affecting the face worldwide, with high prevalence in Asians, Americans, and Caucasians and low in Africans [1] [2].
The etiology of this malformation is multifactorial and includes genetic predisposition, in-utero teratogen exposure, or maternal viral infections. In addition, environmental factors such as smoking, vitamins, and folic acid deficiencies, alcohol consumption, and use of non-prescription medication by pregnant women are considered predisposing factors for CLP [3] [4] [5].
A CLP results from a failure of fusion of the maxillary, medial and lateral processes, which typically happens around the 6th and 10th weeks of gestation. They can present alone or as a combination of multiple birth abnormalities [6] [7].
The lip forms within the fourth and seventh weeks of pregnancy. As a baby develops during pregnancy, body tissue and special cells from each side of the head grow towards the center of the face and join together to make a face. This tissue joining forms the facial features, like the lips and mouth. [8].
A cleft lip (CL) occurs if the tissue that makes up the lip does not join completely before birth resulting in an opening in the upper lip. The opening in the lip can be a small slit, or it can be a large opening that goes through the lip into the nose. A CL can be on one or both sides of the lip or in the middle, which rarely occurs. Children with a CL also can have a cleft palate (CP) [8].
The palate is formed between the sixth and ninth weeks of gestation. A CP occurs if the tissue that makes up the roof of the mouth does not fuse completely during pregnancy. For some babies, the front and back parts of the palate are open. For other babies, only part of the palate is open. [8]
The prevalence of clefts may be affected by socioeconomic, geographic, racial, and ethnic factors. [9] Current knowledge indicates that cleft lip and palate occur in approximately 1 in 700 live births [10] [11].
Meanwhile, there is much information about OFC prevalence, incidence, long-term patterns, and disparity in Ghana; nonetheless, the results have not been consistent [12] [13]. This may be described by differences in the syndromic condition, differences in the underlying population, indistinct classification of clefts, time, and geographic coverage. Agbenorku et al. reported an incidence of 6.3 per 1000 live births in Ghana [14].
Again, in Ghana, OFCs are among the causes of perinatal death [15]. The children often experience difficulties swallowing, feeding, hearing, and speaking difficulties. In addition, these children often face problems in cognition, education, and communication.
Discrimination is disadvantageous to people with disabilities and may affect their self-image and realization of their life goals [16]. Moreover, these discriminations among individuals indirectly or directly affect their socioeconomic life and invariably jeopardize their health.
In Ghana, many studies have been done on CLP. However, most of these studies focus on the incidence of cleft [17], but not much is known about caregivers’ expectations.
Therefore, this study explored the expectations of caregivers of patients with CLP attending the cleft clinic of KATH for the first time to help inform future policy direction.
2. Methodology
2.1. Study Design
The study was an exploratory qualitative study conducted between October and November 2020.
2.2. Study Setting
The study was conducted at KATH, Kumasi, Ghana. The respondents were recruited from the oral health clinic in the hospital.
2.3. Sampling and Data Collection Techniques
Purposive sampling was used to select twenty caregivers who met the inclusion criteria.
Face-to-face interviews were conducted using a semi-structured interview guide to collect data from the consulting room at the oral health clinic. All verbal information was obtained in either Asante Twi or English based on the caregivers’ preference.
Socio-demographic features, including age, sex, occupation, level of education, residence, and religion, were also taken as part of the data collection.
Interviews were digitally recorded, and the researchers took field notes. Permission to use a tape recorder was obtained from the participants to enable data extraction. Information received was transcribed word for word to ensure accuracy. Each interview lasted between 30 and 45 minutes.
2.4. Inclusion Criteria
· Caregivers of patients with CLP.
· Caregivers attending the cleft clinic for the first time at KATH.
· Fluency of the caregiver, either in English or Asante Twi.
2.5. Exclusion Criteria
· Patients with other maxillofacial conditions.
· Caregivers who were not first-time attendees.
2.6. Data Analysis
The data were analyzed using NVivo software. Data were transcribed verbatim and then coded. Codes generated were given themes that made meaning in exploring caregivers’ expectations of patients with CLP. Three major themes and six sub-themes emerged from the data analysis using thematic analysis. The research team examined the themes to confirm that data were represented accurately.
2.7. Ethical Clearance
Before data collection, ethical clearance was obtained from the Komfo Anokye Teaching Hospital Institutional Review Board (KATH IRB) with reference number KATH IRB /AP/152/20. The human data performed were per the Declaration of Helsinki. Before their enrollment, the participant signed a written consent form explaining the purpose of the research and assuring confidentiality of the information to be collected. The rights of the caregivers who declined to participate in the study were respected. All caregivers were further informed that the data collected was only used for the purposes for which it was collected. Only the researcher and supervisors will have access to the raw data.
3. Results
Socio-demographic features of the cleft lip and palate patients and caregivers.
3.1. Socio-Demographic Features of the CLP Caregivers
The socio-demographic data of the respondents are shown in Table 1. Twenty respondents were recruited for this study, with twelve being females and eight being males. Eleven cleft patients had an age range between 0 and 3 months whiles two were above 12 months. The age of the guardians ranged from 20 and 40 years. With the guardian’s relationship to the cleft patient, fourteen were mothers, and two were grandmothers. Sixteen respondents had basic education, whereas two had SHS and tertiary education. Thirteen of the respondents were self-employed, with four being unemployed. Nine respondents had an income between 50 - 500 Ghc, whereas five had an income higher than 500 ghc.
Three major themes with six sub-themes were found in the expectations of caregivers of patients with cleft lip and palate attending the Cleft clinic of KATH for the first time as illustrated in Table 2 below.
3.2. Emotional Experiences
3.2.1. Fear
The caregivers were asked to share their experiences and reactions when they realized their child was diagnosed with a CLP. The majority of the caregivers expressed fear, perplexity, and self-disappointment.
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Table 1. Demographics of caregivers.
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Table 2. Major themes and sub-themes based on thematic analysis.
I was afraid, scared, and cried a lot P1, 5, 6, 7, 9, 15, and 16.
The fear of a caregiver led to her having high blood pressure postnatally when she saw her child.
P 11 reported I was scared and had a rise in blood pressure.
P4 and 5 were so scared that they initially refused to see their children. i.e., I was very scared and sad and could not go near the child.
3.2.2. Acceptance
Some of the respondents were indifferent to the diagnosis and were not afraid but embraced it at the initial glance of it. P8 I am indifferent to the child’s condition.
There were varying reasons for their acceptance.
Some indicated they had seen some of the condition before, and others were hopeful of repair. P13 I was not discouraged as I have seen some before.
P14 I was hopeful that it could be solved.
P12 was not afraid because I was told doctors could fix it.
3.2.3. Isolation
Caregivers were asked to share their sentiments toward the condition of their baby. However, emotionally speaking, it was very difficult for many of them to accept this lifetime fate for their children.
It was difficult to take it, and I was shy to take the baby out. P1, 2, 3, 16, 19.
Some were very scared to the level where they had to hide the babies from the public.
Emotionally, I was very worried and had been thinking about it and could not show the child P7, 9 but P11 I was a bit withdrawn and only allowed family members to see my child.
As the process of grief differs for every individual, some of the caregivers indicated that they were not worried at all.
Emotionally, not worried P10, 12, 13, 14, 16, 17, 20.
3.3. The Expectation of Treatment
Caregivers were asked to share their expectations since it was their first time visiting the multidisciplinary cleft clinic. This theme had two subthemes: expectations of treatment and expectations of health professionals’ attitudes at the specialist clinic.
3.3.1. Expectations at the Cleft Clinic for the First Time
Most of the caregivers were expecting their babies to be operated on. They were certain that the cleft would be repaired at the end of the treatment, but they were unfamiliar with the process and cost of treatment.
‘For the child to be operated on ‘no idea’ ‘no idea’ ‘for the doctors to close the palate and the child to talk normally’ P18, 19, 20.
Less than half reported that they were oblivious of what to expect the first time visiting the specialist cleft clinic but had hopes that the doctors would be able to close the cleft for their babies. So, their response was ‘no idea’ ‘no idea’ ‘no idea’ ‘for the doctors to be able to close the cleft’ P5, 7, 8, 9, 11, 15, 16, 17.
Only P3 could make a suggestive amount on the cost of treatment, not more than 2000 cedis.
3.3.2. Expectations of Health Professionals’ Attitude
It was seen in the caregivers’ responses that they had good expectations of the attitude of the health workers at the cleft specialist clinic.
To be communicated to and help me to understand the process well and nicely P1, 7.
To be talked to politely and professionally P2, 3, 4, 5.
Some of the caregivers expected the attitude of the staff to be normal toward them.
P18, 19, 20 ‘normal’.
3.4. Successful Treatment Outcome
A Desire for Normality
The caregivers were to respond to what they considered a successful treatment outcome for their child, and various responses were given. Most of their answers were when the cleft was repaired, and the child’s mouth appeared normal, like a child without a buccal deformity.
When I see that the cleft is gone and the child’s mouth is normal P2, 4, 5, 9, 10, 11, 12, 13, 15, 16, 19, 20.
Some reported the child’s ability to cry well or have a good speech delivery would indicate a successful surgery.
P8, 14, the child cannot cry well, so if I see the child can open his mouth and cry, I would consider the whole treatment successful.
When the child’s speech is restored, I will be okay P18.
4. Discussion
This study found that most respondents were 30 years and above, which is inconsistent with a study in the sub-region where most mothers were less than 30 years of age [18]. This difference may be because the current study used guardians, including grandmothers, fathers, and mothers, while the other used only mothers. Again, almost all mothers were unemployed or worked low-earning jobs [17]. It was similar to the current study, which found that most respondents were doing menial work for survival. Again this may be due to poor economic living and inadequate job availability in Ghana.
This study also found that most caregivers expressed fear and self-disappointment, similar to a study conducted elsewhere [19], where most families expressed concerns about the marriage prospects and educational opportunities but expected their child’s life to be better when the facial deformity was corrected.
However, several parents of children with CLP were unconcerned with the palate. Still, they merely wanted the lip repaired [20], similar to the current study where several guardians were indifferent to the cleft but wanted it repaired with no buccal deformity. This optimism could be a result of the education and awareness they had received on CLP repair.
This study indicated that it has been emotionally difficult for many caregivers to accept this lifetime fate for their children and social stigma. This may be societal gestures, sayings, and reduced cultural awareness of cleft victims in our part of the world. Some of the guardians were not afraid and embraced it at the initial glance of the diagnosis, which aligns with another study, where most of the parents did not limit their child’s social interaction and were not ashamed to be seen in public. [9] In contrast to the acceptance of the condition upon diagnosis, another study [4] reported that few of their respondents exercised some constraints, kept their children isolated, and did not permit them to leave the house or attend school. This is consistent with findings from this study, where the respondents were very scared and had to hide the babies from the public. This act may be due to cultural acceptance and the stigma of having a cleft child in our part of the world.
Less than half of the caregivers reported that they were oblivious of what to expect on the first visit but had hopes that the doctors would be able to close the cleft for their babies, while in a study majority had all their pre-operative expectations fulfilled [21]. In another study, almost half of the parents spontaneously expressed their conviction that, after corrective surgery, their child would have a better chance of achieving a more healthy marriage [20].
This study found that some caregivers were already in financial difficulties, so their child’s condition was going to compound it. Similar studies showed a lack of finances as the main cause of delay in the repair of CLP [20] [22]. These are all inconsistent with the findings of this study relating to conducting this study in a developing country.
This study reported that most caregivers expected their babies to be operated on, but they were unfamiliar with the process and cost of treatment. These findings were similar to another study where respondents indicated unfamiliarity with surgery [23]. Therefore, these findings could be said to be the reason for the late presentation to the health facilities.
Finally, the ignorance of what to expect at the cleft clinic agreed with a study in developing countries, where factors such as cultural beliefs, superstitions, lack of awareness of treatment services, and lack of time have been reported to contribute to delayed presentation of CL ± P patients [23] [24].
5. Conclusions
The majority of the caregivers were females. The modal age of the patients was 0 - 3 months.
Less than half of the caregivers reported that they were ignorant of what to expect on the first visit but hoped that the healthcare team would be able to close the cleft for their babies. Most caregivers expected their babies to be operated on but were unfamiliar with the process and cost of treatment.
The majority of the caregivers expressed fear and disappointment at the diagnosis of their child.
Some caregivers were very scared to the level where they had to hide the babies from the public. Others reported being already in financial difficulties, so their children’s conditions would compound them.
Per the findings of this study, it is recommended that; the cleft team at KATH should organize awareness creation programs to educate the general public about the CLP condition and available treatment. This can be done in partnership with community health nurses who go into the communities regularly. It is therefore important to update such staff on their knowledge of the condition.
Community members should avoid stigmatization and discrimination against families with CLP since it compounds the emotional trauma and stress that they go through and further demoralize them. Instead, they should accept them and show love to them.
The findings of this study should be generalized with caution since few participants were selected for this study due to the qualitative approach used.
From this study, it is recommended that the cleft team at KATH must educate the public on possible risk factors for giving birth to a child with CLP and should also organize awareness creation programs to educate the population on the availability of treatment.
Again, the cleft team at KATH should educate parents/caregivers of babies with CLP on various stages of CLP care until complete treatment is achieved.
Acknowledgments
We would like to express our profound gratitude to all CLP patients and their caregivers who participated in the study.
Consent
The authors confirm that informed consent was obtained from the patient for the publication of this article.