In this study we showed that mechanisms in paediatric asthma care that lead to deficiencies in the care process for ethnic minority children were mainly related to non-adherence. It seems that most factors our respondents discussed (such as influence of social context factors and difficulties in understanding asthma as a chronic disease) are not related to ethnic minority patients in particular. Rather, they emphasise certain aspects of asthma care that are likely to create problems in the general patient population.
Educational literature describes different stages of competence. In the stage “conscious incompetence,” care providers recognise mistakes and difficulties in their actions, and will be able to report them. However, this stage is preceded by the stage of “unconscious incompetence”: a stage in which learners (or care providers) are unaware of their incompetence [17
] and therefore cannot report them. If applied to our study, this theory means that apart from the difficulties care providers reported (and were aware of), difficulties they were unaware of might also complicate the care process.
A first difficulty the respondents seemed unaware of is related to providing information. Providing information was our respondents’ strategy of choice in case of non-adherence, with the intention of increasing parents’ knowledge on asthma. Studies have shown that medical information is generally not easily understood by patients due to such things as unfamiliarity with medical technical terminology [18
]. Low health literacy (the degree to which individuals have the capacity to obtain, process, and understand basic health information [20
]) complicates patients’ understanding: low parental literacy has been associated with poorer asthma outcomes [21
]. For effective communication, it is recommended that care providers make their own language accessible by avoiding technical jargon and using plain language instead [22
]. Low health literacy is more prevalent in minority populations [23
]; however, our respondents did not reflect on their own use of technical jargon and how that might impede communication.
A second difficulty respondents seemed unaware of is related to language. Respondents recognised language difficulties as a barrier to information transference. Respondents explained that language barriers were overcome by using informal interpreters instead of formal ones. However, research has shown that using professional interpreters in healthcare has added value over the use of informal interpreters [24
] and is therefore preferred if there are language barriers.
Respondents indicated that different illness perspectives were related to non-adherence. Kaptein et al. [25
] showed the importance of patients’ perceptions of disease and treatment for asthma outcomes. The idea of “no symptoms, no asthma” (when patients consider asthma to be an acute rather than a chronic illness) is found repeatedly, irrespective of ethnicity [25
]. Parents who do not perceive asthma as a chronic disease are more likely to administer medication only when the child experiences symptoms. Our respondents did not seem to regard discussing illness perceptions as a standard part of consultations. In cultural competence literature, though, exploring patients’ illness perspectives is considered a central aspect of culturally competent care [27
], because culture has a strong influence on illness perspectives [28
]. Rather than a biomedical communication style, a patient-centred one helps to get information about cultural differences, expectations, and influence of social context factors out in the open [27
Self-reflection receives much attention in the literature on multicultural care [29
]. This acknowledges the importance of reflecting on one’s own cultural background and assumptions, biases, and values, especially when taking care of people from other ethnic or cultural backgrounds [29
]. The respondents reflected little on their own cultural and professional backgrounds. However, care providers did seem aware of the existence of stereotyping. During the interviews, statements like “The same goes for Dutch patients” or “This does not apply to all patients from that ethnic background” were made regularly.
To develop effective, meaningful cultural competence training for specialist paediatric asthma care providers, we have to turn our findings into learning objectives that reflect both the issues care providers were aware of as well as the issues they were unaware of. For care providers to adequately identify reasons for non-adherence in children with asthma from ethnic minority backgrounds, and to effectively act on these, we identified the following objectives:
Ability to use patient-centred communication skills in giving and retrieving information;
Awareness of different illness perceptions and ability to communicate effectively about this;
Ability to effectively overcome language and health literacy barriers;
Ability to reflect on one’s own background and stereotyping in intercultural contexts (Table ).
Difficulties in paediatric asthma care for ethnic minority children
Evaluation of care provided to ethnically diverse patients often showed a “magnifying glass effect” [31
]: difficulties in the care process are revealed that are not unique to patients from these groups but are more intense expressions of general paediatric care problems. For instance, if care providers communicate from a biomedical perspective, it is hard for all patients with low health literacy to understand the information they receive. Since health literacy skills in ethnic minority patients are generally lower, and language barriers might further complicate the communication, the negative effect on patients from ethnic minority backgrounds is larger. Because of the accumulation of characteristics that complicate care, ethnic minority patients experience more disadvantages from suboptimal care. The magnifying glass effect explains why the learning objectives we defined are not so “cultural” either. For the most part they are specifications of competences care providers should already possess. The most striking example is the importance of the ability to use patient-centred communication skills.
By using a qualitative research method, we obtained insight into issues respondents themselves related to adherence in children from ethnic minority backgrounds. By putting respondents’ experiences in the context of the general literature on asthma care and cultural competence, difficulties respondents were unaware of also became apparent.
Research on care providers’ cultural competence commonly uses instruments to measure their self-perceived cultural competence [32
]. However, because care providers cannot report explicitly on things they are unaware of, some issues will go unnoticed. Although our interviews showed an extra dimension in the care process, other methods such as direct observation will provide added value in gaining full insight into the relationship between care providers and patients. Now we had to rely on care providers’ recall. Respondents were asked to elaborate on a specific case from their own practice in which they had experienced difficulties, to get insight in care providers’ concrete experiences. The examples discussed might not be representative for every day practice and therefore not reflect a general need for cultural competence training among these providers. Although during the interviews the issues discussed were placed in broader context (‘was this case exceptional or do these issues happen more often?’), methods like direct observation would provide a more detailed, objective insight into what actually happens during a consultation. Additionally, insight into patient experiences would provide information from their perspective.
A limitation of this study is the small number of interviewed respondents (n
16). This was due to rapid saturation of the data. An explanation for limited variation in data and rapid saturation might be homogeneity of the respondent group. Although gender, years of experience and setting (academic/non-academic) did vary between respondents, we did not verify respondents’ country of birth. Based on their last names, mastery of Dutch language, and appearances, we assume they all had a western/an ethnic majority background. It might be that care providers from ethnic minority background would have put forward different experiences or communication styles during the interviews that would have diversified the data.
Developers of cultural competence training can use our findings as input for developing learning objectives. Although it is important to meet the educational needs of care providers when developing cultural competence training, we have shown it is equally important to take into account issues care providers are unaware of. However, care providers must first become aware of their “incompetence” before they will recognise their need to learn about these issues. We therefore recommend that creating awareness of providers’ “incompetence” should become a part of the training itself or a separate learning activity before the actual training.
Our study was limited to cultural competence at the level of care providers [35
]. For providers to be able to provide culturally competent care, the healthcare organisation should provide the conditions necessary to enable care providers to work in a culturally competent way [36