The World Allergy Organization found that 20% – 30% of the world's population suffers from an allergic disease. Most allergic patients are seen by non-allergy-trained healthcare workers. The public primary healthcare (PHC) management of childhood atopic eczema (CAE) in the central Gauteng district was the focus of the overall study. The focus of this article is the parents’ experience of CAE and the management thereof. The research question was: What is the experience of parents living with a child with atopic eczema (AE)?
The overall purpose was to develop validated PHC management guidelines for CAE. One of the objectives was to explore and describe the experiences of parents regarding the AE of their children and the management thereof.
An embedded single case study design using a qualitative, explorative, descriptive and contextual strategy was employed. Data was collected through semi-structured individual interviews from a purposively selected sample and field notes. Ten parents were interviewed, after which data saturation occurred. Data were analysed according to Tesch's steps of descriptive data analysis. Lincoln and Guba's model was used to ensure trustworthiness.
Three main themes were identified. This article focuses on theme one: The physical, emotional and social impact of CAE. Theme two identified the management challenges and theme three indicated recommendations regarding the management of CAE.
The facilitation of management of CAE focuses on developing PHC guidelines and addressing management challenges in order to achieve better controlled CAE.
The World Allergy Organization (Pawankar
The most common allergic diseases are AE, asthma, allergic rhinitis and allergic conjunctivitis. During the first years of life, eczematous and gastrointestinal symptoms usually predominate in a typical atopic child. Asthma and allergic rhinitis and/or allergic conjunctivitis tend to develop later. This is the so-called ‘atopic march’. AE is not life-threatening, but asthma can be; therefore the development of the atopic march should be prevented (Gray
Eczema is a chronic inflammatory skin disorder that develops mainly in early childhood. There are different types of eczema, of which AE is the most common (Watkins
Research showed that AE has a significant effect on the physical and emotional wellbeing of the patient and the family (Camfferman
AE is often undertreated, despite the disabling effect it has on the quality of life of the patient (Carr
The objective of the study was to explore and describe the experiences of parents living with children suffering from AE who were treated in the public sector of the central district of Gauteng.
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In this study, the experience of parents with children with AE was explored.
PHC in South Africa is the first level of healthcare. According to the African National Congress: National Health Plan for South Africa (African National Congress
One of the rationales for this study was to provide parents an opportunity to describe how they experience CAE and the management thereof. A conceptual framework regarding the PHC management of CAE was developed, as well as validated PHC management guidelines for CAE. This article reports the parents’ experience of CAE.
This study was qualitative, explorative and descriptive in nature and the purpose was to gain a new and holistic understanding of the parents’ experience of their child's AE and the management thereof, in the public healthcare sector of the central district of Gauteng.
Semi-structured interviews were held with parents of children aged 0–14 years who suffer from AE. This was part of a single embedded case study. The case in this study was PHC management of CAE in the public sector of in the central district of Gauteng, within the wider context of the public healthcare system. There were three embedded units of this single case and this article focuses on embedded unit one: Parents of children aged 0–14 years of age suffering from AE, who at a stage visited a PHC facility to seek help for their children. There are no statistics available for children suffering from AE in Gauteng.
The public health sector of the central district of Gauteng was the population for this case study. There were three sample groups (embedded units), but as this article focuses on the findings from the parents, only embedded unit one will be discussed.
Sample one (embedded unit one) were the parents of children, aged 0–14 years, who suffer from AE. The inclusion criteria were: the parents must have visited a PHC facility with their child who has AE; they must be able to speak Afrikaans, English, Setswana or Zulu, as these are the languages the skilled interviewer, who holds a Doctorate Curationis in Psychiatry, can speak. These parents were selected purposively as they were information-rich participants of the phenomenon under study. The selection was done as follows: the researcher explained the research to the people in the waiting room; parents who were willing to be interviewed were selected purposively from the waiting room if they met the inclusion criteria; the parents had to give written consent to be interviewed and audio-taped; and the researcher cosigned the consent document.
Data collection from parents was done using semi-structured individual interviews and field notes. During the interviews, the following were applied to ensure quality data collection:
The nature and ethical implications of the study were explained in more detail to each participant before starting the interview. The researcher ensured that the participants understood this before giving written consent to be interviewed and audio-taped.
The skilled interviewer created a relaxed atmosphere by conducting the interview in the language of the participant (English, Afrikaans, Setswana or Zulu), in a conversational manner without interrupting the participant. Care was shown through sensitive and respectful verbal and non-verbal conduct. The researcher took field notes.
Communication techniques were applied to confirm understanding of what the participant said.
All interviews were done in a private consultation room.
The following questions were asked of the parents of children, 0–14 years of age, suffering from AE: ‘How is it for you living with a child who suffers from atopic eczema?’ and ‘How do you see the role of PHCCs regarding the management of childhood atopic eczema?’ One pilot interview was conducted to test the question. The pilot interview was conducted with a Zulu-speaking mother of a six-year-old male child who suffers from AE. The question was well understood by the parent and produced rich information. This interview was transcribed and analysed, found to be suitable and was included as part of the data collection and analysis. More semi-structured interviews were conducted. The interviews were conducted in privacy, in a consultation room in the unit. A voice recorder was on the table and the researchers, parent and child were seated around the table. One researcher conducted the interview, whilst the other researcher wrote down the observations during the interview. Toys were provided for children to keep them busy in order for the parent to be able to focus on the interview. Data were collected until data saturation was reached, that is, until no new information emerged.
The first step in data analysis was to convert all the evidence into textual form. The interviews were transcribed verbatim. The interviews of parents in languages other than English were transcribed and analysed in the original language by a co-coder who is knowledgeable in qualitative data analysis and who is fluent in Afrikaans, English, Setswana and Zulu. This was done to preserve the original meaning of what was said by the participants. These transcriptions were then translated into English for analysis by the researcher. The data collected through the interviews and field notes were analysed using Tesch's eight steps of the descriptive method of data analysis, as reflected in Creswell (
The Medical Research Council promotes four principles of biomedical ethics, namely, autonomy, beneficence, non-maleficence and justice (Medical Research Council of South Africa
The elements for trustworthiness in qualitative research, according to Lincoln and Guba's Model of Trustworthiness (in Krefting
Strategies to ensure trustworthiness.
Strategy | Application |
---|---|
Credibility | Prolonged engagement by spending time: in the unit and primary healthcare facilities with the data during data analysis. |
Open-ended direct observation and keeping of field notes improved the accuracy of the data collected. | |
Triangulation: two researchers were involved in the data collection, one conducting the interview and one keeping field notes. The researcher and two cocoders analysed the data. | |
Member checking. | |
Data analysis was done using the widely recognised Tesch's eight steps of descriptive method of data analysis. | |
Transferability | A dense description of the research methodology and results. |
Direct quotations of the participants. | |
Triangulation as described under credibility. | |
Dependability | A dense description of the research methodology. |
Confirmability | Bracketing and reflexive thinking was applied throughout the data collection and analysis in order to put personal experiences aside. |
Provide a chain of evidence throughout the study: confirmability audit. |
The findings consisted, firstly, from the demographics of the embedded unit one and, secondly, analysis of the data collected from the semi-structured interviews with parents and field notes.
Ten mothers were interviewed, at which point data saturation occurred. The ages of the children suffering from AE ranged between five months for the youngest child and 12 years eight months for the oldest child. Six of the children were boys and four were girls. Seven of the mothers spoke Zulu, one Setswana and two English. Six of these children were referred from provincial PHC facilities, three from local authority PHC facilities and one was self-referred, but attended a provincial PHC facility initially.
Three themes with their categories were identified: theme one – the impact of AE; theme two – management challenges; theme three – recommendations for PHC management of CAE. Theme one with its categories and subcategories is discussed in this article (
Results: Theme 1, categories and subcategories: Impact of childhood atopic eczema.
Themes | Categories | Subcategories |
---|---|---|
1. Impact of childhood atopic eczema | 1.1 Physical impact | Extreme physical discomfort |
Extra care and caution needed | ||
Physically draining to parents | ||
1.2 Emotional impact | Frustration | |
Stressful | ||
Guilt | ||
Fear | ||
Protective | ||
Satisfaction | ||
Confusion | ||
Compassion | ||
Resilience | ||
Low self-esteem | ||
1.3 Social impact | Isolation/low social integration | |
Absent school/work | ||
Support |
Theme 1 showed that CAE has a physical, emotional and social impact on both the child and the parent.
The physical impact that stood out for the child is the extreme physical discomfort resulting from itching and scratching. This was identified through the interviews as well as direct observation. During the interviews the participants said that the skin looks different (red, rough) and is usually dry and itchy. This causes the children to scratch, often until they bleed. It also came out that the itchiness and scratching interfere with the children's sleep and daily activities. The loss of sleep leads to tiredness and interferes with school work. The skin often becomes secondarily infected because of the constant scratching. Parents said:
‘It used to peel off even if you just touch it, it was just red, the skin was changing to grey, and sometimes it will look like it is rotten.’ (Parent 5)
‘It is on the whole body, even on the face, it is like a crocodile skin.’ (Parent 10)
‘It is very difficult, because he is scratching; he has an amount of blood.’ (Parent 1)
‘At night he feels the pain because it itches this thing, he cries and the worst part is that he is studying and when he is studying he is always scratching himself. It even looks like he is going out of his mind. He will end up sleeping or playing without studying because he is tired.’ (Parent 10)
During the interviews it was observed that all of the children who were in the room had dry skin and were scratching intermittently. One child was very irritable, had extreme dry skin, scratched continuously and had open places on her skin.
The pathophysiology of AE explains the above findings. The barrier function of the skin can be affected by inherited abnormalities, environmental stressors, including irritants, infections and allergens, as well as psychological stress, precipitating AE (Bieber
There are different research studies indicating itchiness and scratching, sometimes with bleeding, as the most common physical effect of AE, resulting in a loss of sleep for both the child and the parents (Alanne
The extreme physical discomfort that the child endures is physically draining on the parents, who lose sleep trying to sooth the irritation of the child. One parent said:
‘And at night she is itchy, you are supposed to wake up and help and scratch her at that time, you are also very sleepy, you are just busy scratching until you sleep there and she will wake you up and say, “mama please scratch me” and you see, that is not nice.’ (Parent 5)
Su
Parents had to do a number of activities differently and exercised extra care and caution because of the special needs of their children with AE. These activities are time-consuming, adding to the physical drain experienced by the parents. These activities included food choices at home and school, ensuring availability of enough treatment, choosing specific clothes, blankets and sheets, cleaning practices at home and hygiene routine for the child, as well as additional involvement at school to help both the child and teacher cope with the illness and schoolwork. Some parents said:
‘I am always cautious … checking the child what he eat.’ (Parent 1)
‘They [
‘There are a lot of things I have to be careful with … whether what I wash her clothes with …’ (Parent 2)
‘He does not even wear his blanket, when the fluffiness of the blanket touches him he gets rash. He has a special sheet that he sleeps with … I place a sheet underneath and then the blanket on top. I make sure that I go to his room every night; you know that a child moves a lot during the night. I wake during the night to check if he is the blanket, even he is not in, I take him back.’ (Parent 9)
‘You know I have to wash every morning her blankets, pyjamas and have to take her mattress outside in the sun and bring in the house at 13h00.’ (Parent 7)
‘You have to choose the clothes. Sometimes it is too hot for her … the wool … you know I have to choose everything … even the hygiene at home … and every time … I have to spring clean because of the dust … I think it also contributes.’ (Parent 2)
‘You will find that there are flies where she sat and I have to always see to it that it is clean.’ (Parent 7)
‘When she started at school, I went to explain to the class teacher.’ (Parent 10)
Chamlin
To live with children with AE brought out many emotions for the parents.
‘What frustrates me most is that … I am given medication and it is not working …
‘When you want the medication and I know that the medication helps the child and her condition has worsened and I can't find the medication at [
This parent sighed a lot during the interview.
The chronic nature of AE and the extreme discomfort of the children aggravated the frustration of parents, as evidenced by the following:
‘The following day maybe, it appears again, what will I say … what will I say …’ (Parent 8)
‘What do I need to give her? Like last night it was terrible – she was crying and scratching till it bleeds and on the hands … I don't know – what should I do?’ (Parent 2)
The limited knowledge of the PHCCs frustrated parents. One parent said:
‘It is difficult, you'll find when it is time to go to the clinic, they do not understand, they see her as if she is positive or whatever, you understand.’ (Parent 7)
Frustration related to the ineffective referral system was also identified. Parents had to wait a long time to be seen by the specialist at the tertiary hospital and had to cope with their child's condition in the meantime:
‘I am very angry with them, because I need them to see her now, because now she is scratching herself!! So, they just gave me for February, but February is very far …’ (Parent 2)
February was still four months away. This parent sighed a lot during the interview and was also very agitated, because no help was immediately available for the child. The interview was stopped to arrange emulsifying ointment from a clinic in a different region to give the parent some relief and to be able to focus on the interview. Thereafter, the interview continued (Field notes).
‘The itching is not on … she uses her teeth to scratch her hands … her hands are cut …’ (Parent 2)
‘I wish there was a way that it can be treated completely like any other illnesses which is manageable.’ (Parent 5)
‘The school children do not understand and the children who play with him in our street, it was difficult for them, they used to touch her, up until …’ (Parent 7)
‘”Mama, are we passing through”… And I said we are not passing through there, they do not understand what these things are. They see it as if it is something that will infect them.’ (Parent 8)
‘You are a bit confused to what … makes the reaction, because he can sleep today being better. Tomorrow he wakes up having a lot of rash on the skin and starting to scratch and scratch until blood comes out.’ (Parent 1)
‘I did not know it was eczema … so I was using aqueous cream that is working for anything but it was not good for her.’ (Parent 2)
‘Like sometimes you don't know which food to give, maybe that food is the one that makes the skin to be like that.’ (Parent 3)
‘You ask yourself what you did wrong that made the child to have eczema. But with me I also had eczema, so it is something that he got from me.’ (Parent 1)
‘He also scratches his private parts and I think my child will get hurt and maybe not have children when he is older.’ (Parent 10)
‘I know people say you outgrow it as I have also outgrown eczema, but in this situation of severity, because I can see other people, explaining to the pharmacist that I am also having eczema for thirty-something years! So I become scared sometimes. Is my child going to outgrow this?’ (Parent 1)
‘I never bought it, being scared that these things can burn her and she will change colour, I said to myself let me follow the medication that I get from the clinic.’ (Parent 7)
‘L [
‘You see, with a child with eczema, you become scared to give her a hiding, because she easily bruises and has marks where you have given a hiding. It does not heal easily; it can take until the following day to heal where you have given him a hiding.’ (Parent 5)
‘I sometimes take a day off at work and go to his school, when the teacher has called me or even when the teacher has not called me, I just go there because I am concerned, it is for the first time that I have a child with this problem.’ (Parent 10)
‘You know sometimes to have a mixture of food … For her; we say at least she must have porridge, you see, so that she must not eat unhealthy food that we eat.’ (Parent 7)
‘What helps me is that I am patient in giving him his medication, because he is becoming better every day. I also see him at times being happy, but when these things start to appear, he is not happy at all.’ (Parent 10)
‘I do understand that eczema is itching … I just rub him, try to sooth the child until he sleeps and just give him all the love and attention that I can.’ (Parent 1)
‘When it is painful, I feel like I should take this thing and put it in me.’ (Parent 4)
‘Actually I am amazed, now she comes first … her treatment every day, although it is difficult.’ (Parent 2)
‘Like yesterday, I did not have money; I made means to get it.’ (Parent 5)
‘I was watching TV on Monday on SABC1 … I thought that I will phone … I am going to the Noleen show to ask if she cannot find people that we can start a support group.’ (Parent 7)
Other studies identified the emotional impact that CAE has on both the parent and the child. Parental feelings identified by Chamlin
In a South African study done regarding the knowledge, attitudes and practices of Cape Town parents of children with asthma (Jones
‘Whenever he wants something I must do it there and then because he is very emotional.’ (Parent 10)
‘She wants to wear clothes that hide everything.’ (Parent 7)
‘But now the teacher told me that he is not coping at all. I must come and sign for the class if he hasn't passed from September 'til December. He just said he will not repeat a class.’ (Parent 9)
Su
AE leads to isolation and lower social integration of the child and parents as well as missing days at school and work. Support received or the lack thereof also had a social impact.
Parents sometimes caused the isolation of their children by physical and emotional protection of their child with AE:
‘You become more careful and you don't want the child to play with other kids sometimes, just to avoid maybe … either they can get sick from him or maybe my child can get something from other kids as well.’ (Parent 7)
‘She is different you know … I don't want to treat her differently from other kids, but … I know I have to …’ (Parent 2)
Parents seem to be isolated as well:
‘I don't know a person who has eczema.’ (Parent 1)
CAE causes children to miss school as a result of being sick or tired, or because of emotional aspects, such as children laughing at them and a limited understanding of the condition on the part of teachers and school children. Parents said:
‘He will say that he is not going to school because other kids are laughing at him.’ (Parent 10)
‘She said he will infect other children, the kindergarten teacher did not understand, so I used to leave him with neighbours to take care of him.’ (Parent 7)
Parents missed work because their children suffering from AE needed extra care, regular visits to health facilities because of the chronic nature of AE or the unavailability of enough treatment. They said:
‘I could see that this problem was becoming more and more each time. Sometimes I go to the doctor today, then three days later I go back again.’ (Parent 1)
‘When you come back again they will tell you that the treatment is finished or it's not all of it, they give you one and tell you to come back on a certain date … I already took a day off at work; I can't take another day off.’ (Parent 6)
Another social impact of AE expressed by the parents is the support they receive and/or the lack thereof from schools, family and work. Parents said:
‘She said that I must explain to her everything that is happening, how to apply the cream and how I give medication. So I usually give him something to wipe himself first, and the teacher will give cream to apply, the teacher never minded really to do this.’ (Parent 10)
‘Where she used to go to school they did not give her support.’ (Parent 7)
‘He normally stays with the grandmother. She is very supportive and even takes her own medical aid and speak to the doctor … please help the child out.’ (Parent 8)
‘They do understand at work.’ (Parent 6)
Chamlin
A Canadian study on the burden of AE by Barbeau and Lalonde (
A single case study design with embedded units was used. If a multiple case study design had been used, cross-validation of findings in other similar contexts would have been possible.
CAE has a profound physical, emotional and social impact on both the child and the parent. Effective management of CAE is essential for control of the condition, to reduce the number and severity of relapse episodes and to reduce the impact of AE. Three main management challenges for the treatment of the CAE that affected the physical, emotional and social wellbeing, according to the parents, were identified: insufficient or ineffective drug treatment; low knowledge levels of the PHCCs, which impacted on the parents’ knowledge; and an ineffective referral system. Recommendations to address these identified challenges are threefold.
The first recommendation is the development and implementation of PHC clinical guidelines for CAE. This can guide the PHCC to prescribe the correct pharmacological treatment in sufficient quantities and give evidence-based health education regarding AE and its management to the parents. The result of more effective drug and non-drug treatment can help to restore the skin barrier and reduce exposure to allergens and trigger factors. This will lead to less dry and itchy skin, leading to less scratching and skin infections. As the physical wellbeing of the child improves with correct and effective drug and non-drug treatment, so will the emotional and social wellbeing of the child improve. The parents’ physical, emotional and social wellbeing will improve as the AE of their children become more controlled, causing less disruption in their lives.
Secondly, the PHCC's knowledge must improve regarding CAE. The district and subdistrict teams, together with nursing educators, have to provide training opportunities, such as in-service training or workshops. Allergies, including CAE, should be integrated into the nursing curricula.
Thirdly, the district and subdistrict management teams should structure an effective referral system, whereby referred patients could be seen within 2–4 weeks of referral, unless it is an urgent referral such as eczema herpeticum.
As seen in the discussion of the results, CAE has a physical, emotional and social impact on both the child and the parent. PHCCs must be aware of these effects of CAE and be vigilant in addressing the individual needs and challenges for each child and parent. It is imperative that the PHCC both understand and implement the treatment guideline (which include indications for referral); and keep their knowledge levels updated. If all three recommendations are implemented effectively, the physical wellbeing of both the child and the parent will improve, with a subsequent improvement in their emotional and social wellbeing and an overall better quality of life for the children and their parents.
Drs A. Temane and C. Dörfling acted as independent cocoders; and Prof. E. Weinberg acted as allergy consultant.
The authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article.
K.F.M. (University of Johannesburg) conducted the research for her Doctoris Curationis degree and prepared the initial article. A.G.W.N. (University of Johannesburg) supervised the study and did final preparation of this article for publication.