Family Practice Vol. 19, No. 4, 319-325
© Oxford University Press 2002
Health Services Research |
Reasons for poor understanding of when and how to access GP care for childhood asthma in Auckland, New Zealand
Department of General Practice and Primary Health Care,
a School of Education and
c Department of Paediatrics University of Auckland, Private Bag 92019, Auckland, New Zealand and
b M
ori consultant.
Dr S. Buetow; E-mail: s.buetow{at}auckland.ac.nz
Buetow S, Adair V, Coster G, Hight M, Gribben B and Mitchell E. Reasons for poor understanding of when and how to access GP care for childhood asthma in Auckland, New Zealand. Family Practice 2002; 19: 319–325.
Received 6 July 2001; Revised 30 December 2001; Accepted 11 March 2002.
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Abstract |
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Background. Attempts to explain why some patients lack the understanding needed to access GP care for childhood asthma are uncommon and have tended to be based on reported statistical associations.
Objectives. The aims of this study were to describe and account for poor patient understanding of when and how to access GP care for childhood asthma in Auckland, New Zealand.
Methods. A general inductive approach was used to analyse 29 semi-structured, personal interviews, during March–May 2001, with Auckland key informants selected through maximum variation sampling. Informant checking and the literature supported the text analysis by two independent researchers.
Results. Key informants reported wide variations in the extent to which guardians and asthmatic children understand when and how to access GP services. Two sets of barriers to patient understanding were identified. The first limits the willingness of people to seek understanding and the second limits their ability to understand, even if they want to understand.
Conclusions. Use of qualitative methodology was able to reveal barriers to patient understanding. Strategies operating at the GP and system levels were identified to help overcome these barriers.
Keywords. Access, asthma, children, GP, understanding.
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Introduction |
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Barriers to accessing GP care for child asthma include patients' lack of understanding of asthma and its management.1–9 Attempts to move beyond description and account for these informational deficits are uncommon. They typically involve correlational analyses—showing that patient knowledge is negatively associated with factors such as educational level7,10 and being non-European11—that might not indicate causation.
Therefore, this article aims to describe and, in particular, explain poor patient understanding of when and how to access GP care for childhood asthma in Auckland, New Zealand. Home to one in every three New Zealanders, Auckland has the largest concentration of Mori (the indigenous population of New Zealand) and Pacific people in the world.12 Diversity within these groups cautions against generalizing barriers to all members. However, insights are suggested into why some patients lack understanding, and parallels may be found for other conditions and societies. Children are defined as persons up to age 18 years, which is consistent with the United Nations Convention on the Rights of the Child.13 Patients include individual ‘I-selves' and collective ‘we-self’ identities because Mori and Pacific people are group-focused rather than, in general, individuals.
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Methods |
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This article is based on a larger study of barriers limiting patient access to GP care for children with asthma in Auckland. Using a qualitative methodology, the article draws on insights obtained through semi-structured interviews with ‘key informants' (KIs).
Sampling
Identified through personal contacts and snowballing, KIs were sampled selectively through maximum variation sampling to document uniqueness and shared patterns.14 KIs were selected to offer a diverse range of ‘expert’ perspectives. For us, an ‘expert’ is someone whose special knowledge could help to answer our research questions,15 which included reference to barriers to patient understanding of when and how to use GP services for children with asthma. Experts spoke for themselves rather than on behalf of groups with which they identify. Living in Auckland, eligible informants varied by age, gender, ethnicity, occupation and inclination to endorse or challenge status quo perspectives. They were recruited for a face-to-face interview. Up to three interviews were scheduled at a time so that results from previous interviews could inform the selection of future informants. Interviewing stopped after 29 interviews, by which time the diversity sought within the sample had been achieved and had stopped yielding information of value. Table 1
summarizes attributes of the sample.
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Interviews
The first author conducted all the interviews between March and May 2001, mostly at informants' place of work. The interviewer sought to conduct the interviews in a non-judgemental and disinterested manner and reflexively to assess and minimize any bias or influ-ence that he and the research process had on the data gathered.
Supported by an interview guide, the interviews were flexible, semi-structured ‘guided conversations' giving priority to informants' own accounts and meanings. The interviewer first asked informants to say a little about themselves. Approximately six topic questions were then posed. They explored how informants believe that families perceive or understand childhood asthma, themselves and GP care for children, and informants' own attitudes and behaviour surrounding access to primary care for asthmatic children. Designed to be neutral, sensitive and clear to informants, the questions were linked to probes. Both were revised for different informants and in response both to identified themes and to impressions recorded in a field journal immediately after each interview. Though speaking as ‘experts,’ informants sometimes spoke of their own experiences.
With informants' consent, all interviews were audiotaped. The first interview (KI21) was not recorded owing to a technical fault. The mean interview length (not including interruptions) was 46 minutes (SD 12 minutes). An interruption (most typically a brief telephone call or someone entering the room) characterized approximately one-third of the interviews but was minimally disruptive. A colleague of KI14 worked silently in the same room but did not appear to influence the interview, for example its candour.
Text analysis
Typed transcriptions of the audiorecordings were read several times by the first and second authors who independently and systematically reduced and reassembled the text, making constant comparison with the literature, until their personal interpretation was complete. Through discussion, they agreed on salient themes and, to aid data management, the first author used NVivo software to develop broader themes or analytical categories that fitted all cases (eliminating outliers) and that could be generalized to an appropriate theory.
Informants indicated whether our interpretation and analysis appeared valid. Their responses were generally corroborative, and discrepant responses were incorporated into the revised analysis, which seeks to link their anonymized attributes (Table 1
) to their own words.
Because this research is qualitative, the ‘transferability’ of its findings to populations outside New Zealand is for each reader to decide. Our responsibility has been to enhance transferability by describing thoroughly the research context and process.
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Results |
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Patient understanding
Key informants reported wide variations in the extent to which guardians and asthmatic children understand when and how to access GP care for child asthma. Samoan GP, KI19, noted how little many Pacific people "understand how things work—that they need to go to the doctor in the first instance rather than to the hospital; that you have to form a relationship with your doctor rather than going to five different people" and that the caregiver needs to be the person presenting to the GP with the child. According to a manager of Pacific health, "most [people] do not know of the universal entitlements for children [free care under age 6 during office hours]" (KI27).
This lack of understanding presents in at least two ways. First, there are patients who do not understand the need for ongoing GP care "in the face of wellness" (KI19). This group does not identify cough and wheeze with asthma, and/or tends to underestimate the seriousness of asthma symptoms. Delays in presenting children from this group for GP care are positively associated with hospitalization.16 A second group of patients tends to overestimate symptom importance. A children's ED specialist (KI14) said, "the most common misconception on their [guardians'] part is that something's a lot more serious than it is." One GP noted that "a significant number" of patients obtain community-based, Accident and Medical care after hours, even though "a lot of the time they don’t really need to go there" (KI12).
However, GP care does not necessarily improve patient understanding of how to manage childhood asthma. KI19 sees patients in her Pacific practice everyday "who have been to three different people and understood absolutely nothing that has been said to them." KI6, a Mori community health worker, herself "used to be like this in my younger days and say ‘Yes' to everything and don’t really know what he or she is saying." As a result, "informed consent is a joke" (KI19) and "after you talk all this time about asthma and how you manage it, they still look for that cough medicine" and antibiotics to treat asthma. Families are dissatisfied, anxious and "not confident in interfacing with the system" (KI27). Moreover, as KI26, a Tongan GP, stated, "if they don’t understand how to use their medication, what to look out for, they won’t comply." Literature3,17,18 supports this observation.
The interviews revealed two sets of barriers to poor patient understanding of when or how to seek GP care for childhood asthma. The first limits the willingness of patients to seek understanding. The second limits the ability to understand, even if understanding is wanted.
Willingness to seek understanding
Fearfulness. Table 2 lists eight types of fear associated with seeking GP care for childhood asthma. Reflecting patient representations of self, the illness condition and GP care, these fears can discourage patients from seeking understanding, as discussed in detail elsewhere.19
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Humility.. M
ori and Pacific people might not question GPs or express disagreement out of humility, respect and a desire not to push forward. This behaviour does not suggest weakness, and those it describes are not socially disadvantaged by others. Rather, they seek to act in a "lowly position of honour."20 This is perhaps most salient among women (KI2); for example, as a Samoan woman, KI20 noted that she cannot advocate for herself but can advocate for others.
Interest..
Health and health care are low priorities for people disadvantaged socio-economically. Mori and Pacific people may feel compelled to meet financial commitments to the extended family, ethnic community or both before meeting immediate personal needs.21,22 However, it is not only subsistence that takes priority over health care. KI9, a respected Mori elder, spoke of Mori who attend "presenters" but "want to go outside and smoke and things like that and they miss the important part."
Lack of interest also occurs because, for example, once many Pacific people "get to New Zealand, compared with where they were in the Islands, they are fine" (KI28). Many are content with what they have and can thus be described as ‘satisficers,’ meaning non-optimizers.23 As two Yiddish proverbs say: "the less a man understands, the happier he is", in part because "the more a man understands the more that is expected of him."24
Pacific people may also be sceptical of "Palagi [white New Zealander's] medicine" (KI23). Meanwhile, some Mori feel scepticism because they believe that mainstream providers "don’t care for us as Mori; they care for us as a patient, a sickness" (KI18).
KI5 observed among her own Mori people "a national deception that we live in God's greatest country and we’re fine and I think there is quite a degree of apathy out there . . . this is New Zealand. I won’t die. If I get sick I can go down to the Accident and Emergency and I’ll be fixed up." In contrast, KI1, a Mori GP researcher, took a historical perspective. She noted that the educational system in New Zealand has diverted Mori from academic courses, perpetuating among her people low expectations of themselves.
Most Asian migrants and refugees are the antithesis of uninterested patients. Their thirst for understanding reflects, in part, the work ethic of philosophies such as Confucianism. These migrants generally believe that education and integration will help to safeguard their children, at least, from the hardships so many experienced in their countries of origin (KI28).
Unhealthy optimism..
Some people think, ". . . it will soon go away whatever is wrong" (KI10). They are unwilling to seek understanding because they think, "There's nothing I’m doing wrong so it must be all right, and the child will . . . soon get over it." Both KI6, a Mori community health worker, and KI23, a Samoan GP, described this attitude among their own peoples as "laid back." KI26, a Tongan GP, sees "a relaxed attitude towards things amongst Pacific Islanders"; yet, among Mori (KI8) and Pacific people (KI27), this may be a coping strategy.
Risk taking.. Reducing the perceived necessity to seek understanding, risk taking is salient through the middle teenage years when it can occur as part of a major developmental imperative within peer groups. However, risk taking is not necessarily a conscious behaviour by teenagers (KI13).
Ability to understand
Communication skills..
Even if willing to seek understanding of when and how to access GP care for children, patients may be unable to acquire this understanding. One reason is language barriers. In New Zealand, these characterize many Pacific migrants, including "grandparents . . . who care for most of the children" (KI27), and other, new settlers with non-English-speaking backgrounds.
KI26, a GP in a Tongan practice, described the scale of the problem: "I speak Tongan to all the patients. It's only the young teenagers who were born here that I need to talk in English to." KI12, a white New Zealand GP in a predominantly Pacific suburb, said: "probably about half the time" an interpreter is not needed; the other 40–50% of the time a family member can help.
His practice has "a Samoan and a Tongan nurse and a Cook Island receptionist, so we are able to use their services at times. But we do have problems with Niue." Most practices lack staff who can interpret, when needed. Although specialist interpreter services are publicly available, it may be inappropriate to use them where their acceptance of the problem, or by the family, is difficult (KI29). Also, GPs may not always recognize the need for an interpreter since many Pacific people for example, nod politely rather than admit to language difficulties.
Where language is a barrier, going beyond simple explanations requires time that GPs do not have (KI16). Although many Pacific people respond best to the spoken word and diagrams, providers "put out things with too much writing" (KI6). Little visual (including written) material has been designed for different cultural groups. For example, asthma plans are produced only in English. Nuances can be lost through translation from English (KI18).
Many Pacific people attend clinics where GPs speak the patients' first language. This reduces but may not eliminate language barriers. For example, "asthma in Tongan is ‘hela’ and ‘hela’ can mean just being tired or running out of puff" (KI28). Even patients who speak the doctor's first language might not understand jargon. Patient understanding of medical terminology has been associated with significant misconceptions.25,26
Education..
Meanwhile, some patients, said GP KI26, "are just purely ignorant." Lacking formal education and, typically, understanding, they may believe that their child is "just putting on an act" (KI10). Even if they accept that the child has a health problem, they might not seek GP care because, said KI6, a community health worker, "a lot of my [Mori] families . . . can’t read or write." Hence, "they tend to come back to the things they know" and may believe that "some kind of traditional illnesses . . . is causing them to wheeze" (KI23).
Related to lack of education is poor reasoning capacity. KI10 related the story of a mother who "said, ‘It wasn’t my family [that precipitated the asthma].’ I said, ‘What about the other part of the family?’ ‘Oh, I got no other.’ And I said, ‘the father—maybe on his side?’. ‘Never thought about that one.’" Similarly, KI9 is helping her "Mori people because they were so slow in picking up certain things." Samoan-speaking GP, KI23, said that "you have to tell them bit by bit and I think, when you are not well informed, you could forget things."
Experience.. Some people have no prior experience of asthma or GP care in New Zealand. Pacific people, among others, may be used to attending a hospital for first contact care. Three-fifths of the Pacific population were born in New Zealand but still may struggle with the complexity of its health system. In part, "it's a generational thing, that they grew up with their parents" (KI19).
In Mori and Pacific families, parents may lack knowledge because "grandmother always looked after her [the child] and she never told me, so I didn’t have a clue" (K7). Other guardians' experiences of health care can reassure falsely. For example, bronchiolitis:
"can send a signal to a parent, like ‘kids can wheeze and still function fine.’ When you move up to . . . asthma, for the parent or caregiver for the child, that change in the pathological cause of the condition isn’t something that's their concern; it's the same thing. The kiddy wheezes, they run around, they’re fine" (K7).
Singularity of message.. Many Pacific and Asian people attend multiple GPs from whom they may receive different messages (KI20). A further problem is lack of co-ordination of care. Samoan GP, KI19, described the problem by noting that: "if you take a child to the hospital, at the moment there's the hospital asthma educator, there's the specialist paediatric nurse who follows them up, there's our service, there's our practice nurse, and all these people are saying something different, maybe. We find there's an incredible amount of confusion."
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Discussion |
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TopAbstractIntroductionMethodsResultsDiscussionReferences |
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This paper has described and accounted for poor understanding of when and how to access GP care for childhood asthma in Auckland. Barriers have been identified to the willingness and ability of patients to understand. However, most of these barriers are not specific to asthma. Therefore, in suggesting strategies, at the GP and system levels, for overcoming these barriers, Table 3
is also relevant to accessing GP care for other illness conditions.
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Overcoming the unwillingness to obtain understanding requires addressing fears and lack of interest, among other things. This requirement can be met by helping patients to develop a positive and healthy sense of their own, and others', personhood and of the value of understanding. At the system level, this requires establishing a culture of respect, initiatives for social and cultural integration, and opportunities for different levels of patient involvement.
At the provider level, patient willingness to understand can be addressed opportunistically, partly through patient education. However, patient trust and acceptance of this education also require that GPs earn patients' willingness to seek understanding. GPs must consistently put words of tolerance and respect into practice, helping patients to feel welcome, comfortable, valued and able to participate actively in information exchange and decision making. Since some people seldom, if ever, visit GPs, patient education is also needed from other health professionals, including community health workers and nurses who can seek out people in their own environments, including their homes, the church and schools.
Increasing the ability of patients to understand requires instrumental assistance, including arrangements to overcome financial barriers to GP care; workforce development, which would permit people to choose to visit a practice with GPs or other health workers from their own ethnic group; and comprehensible information on when and how to access GP care. Flexible, multimethod and culturally safe delivery of information is essential in order to respond to patients' different cultural, educational, condition-specific and other needs. Table 3 lists strategies for facilitating communication, for example with people from non-English-speaking backgrounds and people who lack formal education or experience of the health system.
For patient education among other things, GPs must be enabled at the system level to access communication skills, educational materials in different languages and knowledge of cultural safety as an integral part of GP education programmes. In Auckland, there is also a system-level need to invest in language interpreters. A GP caring for many new settlers remarked that "the amount of money we can spend on the training of interpreters will be very much less than the unnecessary investigation we order, wrong diagnosis we make, inundating the out-patients appointments . . ." (KI29).
Patients' ability to understand requires them further to receive a single message. In the context of child access, it is important, therefore, to encourage the main caregiver consistently to accompany the child to the same GP or practice, thus providing ‘patient continuity.’ Without removing patient choice, a requirement in New Zealand for patient enrolment with one practice would help to achieve this requirement as part of longitudinal, holistic care.
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