Practices employed by South African healthcare providers to obtain consent for treatment from children

Problem statement

Currently, there are no clear guidelines in the Children’s Act ⁶ or its regulations to assist healthcare providers with maturity and mental capacity assessments with limited guidance in literature especially for children. ^4,9 In addition, many healthcare providers have been inadequately trained to do these assessments ²¹ and currently these assessments are not standardised. ²²

These current limitations could lead healthcare providers to use intuition in their assessments ¹¹ and consent laws being implemented inconsistently. ⁴ In practice, it was noticed that out of fear for litigation healthcare providers tend to obtain consent from parents regardless of the consent requirements specified in the Children’s Act. ⁶ A guide that is context specific and relevant needs to be developed to assist healthcare providers; however, the first step would be to determine what the current practices and perceptions are of healthcare providers, who have to enact the laws. Based on this information, literature sources should be used to propose a guide for assessment of children’s decisional capacity.

Setting and population

The target population comprised all professional nurses (PNs) and medical practitioners (MDs) working in a hospital, community health centres and clinics in the northern regions of the city of Tshwane, in South Africa. The City of Tshwane is the administrative capital of South Africa with an estimated population of 2 million, with about 18% of people living in informal settlements. ²⁴ Health services are provided through regional hospitals, district hospitals, community health centres, clinics and satellite service units. ²⁴ PNs and MDs were sampled purposively. ²³ At the time of data collection, from the sampled clinics, there were 118 PNs and 15 medical doctors. The participating hospital had a total of 143 PNs; six PNs were specialised in child nursing and one in psychiatric nursing science. During the same period, there were 22 MDs. Diversity of sampling participants was ensured based on the following inclusion criteria:

Healthcare providers who were registered as either MDs or PNs;

The sample size of 24 healthcare providers depended on the saturation of data. Saturation was reached after 20, but four more interviews were conducted to confirm the data saturation. The researcher, supervisors and independent coder who are knowledgeable about qualitative data analysis confirmed the data saturation.

Data collection and procedures

Data were collected between March 2014 and December 2014. Semi-structured interviews were used to enable participants to openly discuss their current practices and perceptions when assessing children’s maturity and mental capacity when obtaining consent from them. Individual interviews were deemed most appropriate as it provided an opportunity to provide maximum information in a non-threatening environment. Furthermore, an interview allowed for both verbal and non-verbal interactions between the researcher and participant, enabling the researcher to obtain multiple responses to questions and allowing for detailed responses. ²⁵

Interviews were conducted in English for 30–60 min, in a private venue in the workplaces during times when there were no patients or they were available to be interviewed. All participants could speak English. An interview schedule was developed and used as the data-gathering tool. The interview schedule (refer to Table 1) aimed at gaining participants’ perspectives but at the same time gave the researcher control of the interview so that the purpose of the study could be achieved and the research topic could be adequately explored. ²⁵ The interview schedule was pre-tested by the researchers with two participants. The data were included as no changes were required and relevant information rich data was obtained.

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Table 1.

Interview schedule.

Question	Probes
1. Please tell me about your experiences with obtaining consent from children	In your perspective what does maturity and mental capacity mean? How do you go about obtaining consent from a child? Could you tell me more about how you determine whether children are able to give consent?
2. Could you please tell me about a time when you had to obtain consent from a child?	What happened? How did you deal with that? How did you know that the child was capable of consenting/not capable of consenting? What was challenging about this situation for you? What was the outcome?
3. What is your view and perspective about a child’s ability to consent to healthcare and treatment?	How capable do you think a child is consenting to diagnostic investigations (e.g. an HIV test)? How capable do you think children of 12 years and older are to consent to:  Medical treatment (e.g. using TB medications or a  course of antibiotics)  A surgical operation (any invasive procedure)  Use of contraceptives? How capable do you think children are of consenting to a termination of pregnancy when:  Younger than 12 years  12 years old and older?
4. Looking back at your experiences with obtaining consent from children, how would you know children are able to consent to healthcare and treatment?	A child older than 12 years? A child younger than 12 years?
5. What are the best ways to assess whether a child is able to consent (has capacity?)	What are the best ways of giving information to children? What would you recommend other healthcare providers do when they obtain consent from children?  A child younger than 12 years?  A child older than 12 years? What support do healthcare providers need to assess and decide about children’s capacity to consent?

Data analysis

Data were analysed using descriptive qualitative content analysis. ²³ After interviews were conducted, the audio recordings were transcribed verbatim and field notes were added to individual interviews in order to enhance data triangulation, and enhance meaning and detail to the findings. ²³ During the process of analysis, patterns and similarities in the interviews were identified with the focus on their practices employed by healthcare providers when obtaining consent from children for treatment. Themes were identified and recorded. The researchers and independent coder reached consensus regarding the themes, categories and subcategories identified in the data.

Trustworthiness

Trustworthiness was enhanced through the criteria of credibility, transferability, confirmability, dependability and authenticity. ²⁶ Adequate time was spent with participants to enhance prolonged engagement. The methods and findings were described densely and purposive sampling ensured that persons with knowledge and experience about the topic would be included. The interview schedule was pre-tested and the data analysed by an independent coder who reached consensus with the researcher on the themes, categories and subcategories. All data and supporting documents were kept to ensure an audit trail.

Research ethics

Ethical approval was obtained from the Tshwane University of Technology Research Ethics committee as well as the Tshwane Regional Ethical committee. Permission was granted by the Chief Executive Officer of the hospital and manager of the relevant clinics included. Informed consent was obtained from participants and interviews were conducted during times when the health service was not offered or not busy. All participants’ names were coded and excluded from transcripts and in all forms to ensure confidentiality and anonymity. All data had been password protected and would be stored securely for 3 years at the university where after it would be destroyed.

Inconsistent implementation of consent laws

When obtaining consent from children, healthcare practitioners applied the consent laws inconsistently evidenced by varying degrees of implementation influenced by a number of factors.

Varying degrees of implementation of consent laws were evidenced in the data by some healthcare providers’ refusal to provide health services to children if no parent was present to consent as explained: ‘Parents are needed for consent, children without parents are sent home’ (PN). On the other end of the continuum treatment was provided regardless of the child’s capacity to consent, as a participant explained: ‘You just give them everything they want … We don’t ask many questions’ (PN).

In between these extremes were healthcare providers providing health services to children but cautioning them to be accompanied by a parent or by obtaining dual consent from parents and children in future. One PN explained, ‘I will never send them away with no kind of treatment but I will ask them to come back with someone they trust that I can speak to’.

The factors that contributed to the inconsistent implementation by healthcare providers of the consent laws were some due to limited knowledge or misinformation about consent laws, perceptions and personal frames of reference influencing healthcare providers’ practice, feeling obligated to protect both children and their parents and practical barriers influencing obtaining consent from children.

Some participants were conversant with the consent laws. Others acknowledged their limited knowledge with regard to the Children’s Act ⁶ and its provisions. Some stated that they were knowledgeable. However, during the interview, it became evident that they were referring to the previously repealed Child Care Amendment Act ²⁷ or had misinformation about the present Act’s age limits. Some healthcare providers verbalised that they were aware that the Act had been revised but were uncertain about the details thereof and how it impacted on their current practice. Very few healthcare providers were aware of the requirement to assess children’s maturity and mental capacity and expressed anxiety and distress as they felt ill equipped to do so. However, they acknowledged the importance of being knowledgeable about the consent legislation (Table 3).

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Table 3.

Limited knowledge.

Unit of meaning	Quote
Limited of knowledge	First of all you need to know what the Law says, which I myself have very little knowledge about. (PN)South Africa is 14 [years], certain is 16 [years] … so I get confused sometimes [about] what actually is the right age. (PN)
Misinformation	l have been trained in child legislation, in South Africa it is 14 and 16. (PN)Contraception … should only be given to 18 year olds … under 18 we counsel … the level of maturity comes into play and we advise the parents to be involved. (PN)I was under the impression a 14 year old can never consent on their own, so when they come here on their own I see them, but when it’s time for medication I tell them you need an adult. (MD)They need to be above eighteen, if I’m right eighteen years can content for surgical operation. (MD)
Correct information	Children over twelve years can give consent and also depending on their level of maturity, you might need to involve the parents [to HIV testing]. (MD)
Acknowledge knowledge limitation	We need training courses or workshops on how to deal with children. (PN)

Healthcare providers’ perceptions and personal frame of reference about the appropriateness for children to give consent influenced practice which contributed to inconsistent implementation practices. Many healthcare providers felt that children were not supposed to consent. Table 4 provides the units of meaning and quotes about healthcare providers’ perceptions and personal frame of reference.

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Table 4.

Perceptions and personal frame of reference.

Unit of meaning	Quote
Perceptions that children should not be able to consent	There is a thin line between what the law says I should do and my personal opinion. As a health care provider, I don’t think children are able to consent. (MD)The difference between the Law and my own opinion is a very challenging one. (PN)I know in this new South African law that children can consent to HIV [tests] and they can come and look for contraception at that age, it is a difficult one, because I think when it comes to that I am biased as well. (PN)[An] eleven year old … does not understand anything other than schoolwork according to me. (PN)I don’t think they are capable [to an HIV test] I think it’s a burden on children. (MD)
Perception that children should be able to consent	A 12 year old, they really understand their situation, so my understanding is treat them as consenting adults first until you are prove otherwise. (PN)
Use of personal frame of reference	You start turning the things to you, what if this was your child? (PN)I don’t think so [a child older than 12 should consent to an HIV test]. I can’t imagine my child coming and telling me they went and someone tested them and they are positive, cause I’ll wonder what’s going on in their head do they understand how they got this? (MD)Someone as young as twelve is still a baby. I have a seven year old I wouldn’t want anyone testing my child when I’m not there. (MD)

Another factor leading to inconsistent implementation of consent laws was that healthcare providers felt obliged to protect children and themselves taking on a parental role as one participant explained: ‘I just speak to her as a mother … protect her …’ (PN) and ‘… they don’t really know what they are doing to their bodies, they need to be protected’ (PN). An MD explained his or her concerns about disclosing HIV status to a child without a parent for support: ‘I always have this feeling, “what if I test this child, this child is positive and they don’t really understand and they go and commit suicide?”‘ Some healthcare providers personalised the fact that parents might be excluded from the consent process and wanted to protect what were in their perception parental rights. One participant said, ‘I think a parent has a right to know what is happening with their child. I would want to know’ (PN).

Some of the practical barriers that influenced implementation of consent laws were the limited time due to human resource shortages and needing more time to work with children, a need for multi-professional support and guidelines to implement the consent laws and to perform mental capacity assessments. Table 5 outlines these units of meaning and supporting quotes.

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Table 5.

Practical barriers.

Unit of meaning	Quote
Limited time	We do not have enough time, there are queues, and queues and queues. I don’t have enough time with a child and explore [on] her situation. (PN)Only sometimes we’re lazy to do this whole [HIV] counselling, because you think … the queue [is long], I can’t spend 20 minutes talking about HIV, so you just do the highlights and you [say] ‘You understand? (MD)
A need for multi-professional team support	Somebody [a child] who is going to need prolonged treatment or rehabilitation … that is the time when I would like to have support from other professionals, like social workers and psychologists. (PN)Maybe at some point [a] psychologist need[s] to sensitize us and say, ‘do things this way and see if they don’t work?’ or even the social worker and say ‘here is an approach’. Because remember as doctors we do bits and pieces of everything so we might learn from them during some of their consultations. (MD)
A need for guidelines	A standard operating procedure can be used by everyone, so that it can be uniform … if we have a standard operating procedure that would guide us and that would protect us, in case if that thing [litigation] happens. (PN)
Infrastructure of health services not child friendly and support privacy and confidentiality	Sometimes hospitals and even some clinics are not well structured to give space and confidentiality to some of these consultations [with children]. (MD)[The] environment is not friendly to begin with. As for the staff, I don’t think we need more training. It is probably more customer, patient doctor, patient sister relationship[s] that needs to be emphasised. (MD)

Practices used when determining capacity to consent

Healthcare providers explained their current practices when assessing children’s capacity to consent starting with building a trusting relationship and rapport, then providing information followed by assessment practices.

Establishing a trusting relationship with both the parent and the child was explained as a precursor to meaningful interaction with children and essential in the process of obtaining their consent. One participant explained,

If you talk in a very formal way, above their heads [children], … they won’t really … feel that we care about them … they will consent without really understanding all the implications, but if they learn to trust you, then they will ask all the questions to know exactly what is going on with their bodies. (PN)

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Table 6.

Prerequisites to establish and maintain trust with children.

Unit of meaning	Quote
Adequate time	It took longer [with the child] to the irritation of those waiting outside, because it takes longer for them to open up. (PN)They need more time to tell you the truth or to open up to you. (PN)
Consistency of staffing in hospital	We need to build rapport and don’t do rotation allocation [of nursing staff], children must know when staff are changed around as they become used to you. (PN)
Interpersonal qualities of honesty, sensitivity, humour, friendliness and being non-judgemental	It’s all about the staff attitude … I tell them honestly ‘it is painful’ when I have to do a procedure on them … (MD)Speak to them nicely [politely] … joke with them. (PN)You always have to be more friendly, more polite [with children] to gain trust before you can do anything. (MD)Never be judgemental, because they expect … to tell you something, but not to judge them. (PN)[A] non-judgemental attitude. If you give them ‘Hey what where you doing?’ then you have lost the battle before you have started. (MD)
Confidentiality and privacy	Confidentiality to them is important. (PN)They are sensitive, they need privacy. (PN)

When giving information to children, healthcare providers explained that they did so at the appropriate level for the child, repeated the information and made use of peer group discussions. Information given was often about treatment and the importance thereof. Some comments were ‘… when they get medication, you must teach her if she is getting antibiotics …’ and ‘… you tell these children about the importance of treatment, if you don’t take treatment, you will come back again …’ (PN).

Healthcare providers stated the importance of giving information on the child’s level, this included in a language understandable to the child, and on the child’s social and cognitive level and by reinforcement of the information. Some of the healthcare providers cautioned against the use of age to determine the level of information as children’s experiences and social contexts also played a role. As one healthcare provider explained, ‘[One] child develop[s] very fast according to the stages [of development] and the other [child] develop[s] very slow’ (PN).

Information had to be adapted not only to the child’s level of development but also to their informal language: ‘Use the language they use [on] the street so that they [connect] with you. Don’t use those sophisticated medical terms … even your English must be simple’ (PN).

Healthcare providers explained that using peer group education when sharing information is valuable and that children often accessed health services with their peers explained by healthcare providers as follows: ‘They normally come in groups; you find they are 3 or 4’ (PN) and ‘Children tend to come to facilities in groups and healthcare providers were happy to talk to them together or provide education or information in a group’ (PN).

Information was reinforced though repetition and the use of other sources of information such as pamphlets, posters and plays. The following quotes provide evidence for these sentiments: ‘Talking and talking and talking to them just reinforcing information all the time’, ‘[give information] in the form of an act or a play or something they understand’ and ‘show them posters’ (PN).

The practices implemented by healthcare providers when assessing children’s capacity to consent included investigating their history and social circumstances. Different yardsticks were used for assessment which was at times based on intuition. Healthcare providers explained how children’s social circumstances informed them about a child’s understanding of health conditions. One healthcare provider explained that, how she concluded that a child understood the condition as his or her parent had died of HIV: ‘If the child is less than 12 years but she is matured … she comes here and […] tells you that “my mother or my parent [is] dead because of HIV” then you can see that this child [has] knowledge about HIV’.

Healthcare providers used different yardsticks when assessing children’s capacity to consent, namely, intuition, age, experience and background, understanding of the topic and appreciation of the consequences. Supporting quotes for these units of meaning are summarised in Table 7.

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Table 7.

Use of different yardsticks.

Unit of meaning	Quote
Intuition	So for maturity we don’t have a tool like that. It goes with your gut feeling and getting the information from the child and how they explain and understand situations. (MD)The ‘cleverness’, I’d see the ‘cleverness’ there is no other way to explain it. (MD)
Age	Cannot consent if you are not 16 years old. (PN)
Experience and background	You cannot do it in age, it is impossible. (MD)Children’s development depends on background, understanding and stimulation at home. (PN)
Understanding of the topic	Assesses knowledge on a specific topic. Any misinformation indicates a lack of capacity. (PN)It’s the level of collaborating, questioning and wanting to understand [by the child] that [evidences] maturity level. (MD)
Appreciation of the consequences	The moment they can see the bigger picture, they are mature enough to make decisions on their own. (PN)

Study limitation

The study was contextual and exploratory in nature and cannot be generalised; however, findings might be transferrable to other contexts. The opening questions, ‘please tell me about your experience with obtaining consent from children’ and the first probe ‘How do you go about obtaining consent from a child’ could have been leading implying that healthcare providers did obtain consent from children. A more open-ended question would be to ask, ‘When, if ever, do you go about obtaining consent from a child?’