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| Journal of the New Zealand Medical Association,
03-June-2005, Vol 118 No 1216
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Talking about TB: multicultural diversity and tuberculosis
services in Waikato, New Zealand
Clif van der Oest, Richard Chenhall, Dell Hood, Paul Kelly
New Zealand has one of the lowest rates of tuberculosis (TB)
in the world, but has high rates in the indigenous Maori and non-European
immigrant populations.1–6 TB is an
infectious disease that is prevalent in developing
countries.7 It is transmitted through airborne
droplets or through the ingestion of infected food, and results in disease of
the lung and (less frequently) other body
organs.7
In New Zealand and other developed countries, increasing
immigration from high TB incidence countries and the deterioration of control
programs as a consequence of reduced Public Health funding have resulted in an
increased incidence of TB.2,8-11
A recent study examined the effects of the changing
socioeconomic, cultural, and geographic characteristics of TB cases in the
Waikato Health District (WHD) of New Zealand from 1992 to
2001.12 That study documented the persisting
high incidence of TB amongst Maori, as well as the significant rise in the
incidence of TB amongst migrants from countries with a high prevalence of TB.
Therefore, it is important to examine the accessibility and delivery of health
services to the Maori and immigrant populations.
In August 2002, the Waikato
Refugee and New Migrant Strategic Plan –
2002 to 2007 was released.13 This
document is designed to address the broad areas of social integration, health,
education, literacy, and employment of new immigrants in the WHD. The authors
describe the plan as a response ‘to the challenges of resettlement and
meeting the often complex needs of these new (immigrants) and their
families’. 13
The plan is also described as ‘the first significant
attempt to plan and fund inter-sectoral service development for refugees and new
migrants within the Waikato region’. 13
Within the area of health, the plan recognises significant problems amongst
refugees and new migrants (such as issues of access to healthcare services,
non-compliance with treatment, inability to meet the cost of medicines, and
failure to keep appointments) and subsequently makes several
recommendations.
Our study is designed to achieve a better understanding of
both the cultural differences between different minority populations in their
understanding and approach to TB health issues, as well as to better understand
the various barriers that these different populations experience in accessing
health services.
With the development of this knowledge, health services
(including those for the management of TB) can more effectively meet the needs
of these populations and fulfil the aims of the
Strategic Plan.
MethodsThe research was undertaken
over a 3-month period from January 2002 to March 2002. It was decided that
community representatives (acting as proxy respondents for their community
group) would be approached to participate in this study. Reasons and the
potential biases for this decision are presented in the discussion section of
this paper.
Participants were selected by using the contact list in
the New Settlers Handbook, which lists
all immigrant communities and the contact details of community representatives.
From the largest community groups, seven individuals were contacted and given
information about this project, and asked whether they were available to
participate. Arrangements for the interviews’ location and time were also
arranged. Representatives from the seven minority populations agreed to
participate and were subsequently sent a letter outlining the purpose of the
research project (see Table 1).14
Each interview was undertaken in English at a venue of
the community representative’s choice. Open-ended questions were used to
elicit each representative’s opinions about the significance of TB for
their community; these included the community’s perceptions of the current
level of TB services, and the community representative’s thoughts about
how these services could be improved.
At each interview, the responses to each of the
questions were recorded in note form by the interviewer, and then transcribed
following the completion of the interview. Whilst many researchers tape-record
(and later transcribe) interviews for later analysis, we did not have the funds
or resources to carry this out. However we were able to make detailed notes
during and after each interview which resulted in very little loss of detailed
data.
We were unable to show each participant these notes and
allow them to change any incorrect emphases, after the completion of the
interviews, due to the lack of funding for return visits to give the appropriate
level of time and personal contact necessary to allow for feedback. This may
have affected the results received, however the researcher was able to clarify
statements and provide feedback to participants during the in-depth interview
and later by phone.
The Waikato Ethics Committee and the Northern Territory
University Human Research Ethics Committee approved this study.
Table 1. Minority populations included in the research
project at Waikato Health District, 2002
Source:
Statistics New Zealand.
ResultsTB
beliefs—Whilst all respondents reported that TB was well understood
by their communities, several community representatives stated that the symptoms
of TB (a persistent cough) were often not recognised or misattributed to other
conditions. For example, the Maori representative articulated that lung cancer
was often attributed to the symptoms of TB.
There were a variety of other reasons noted by community
representatives to explain why TB may not be recognised. Asian representatives
reported a widely held belief that TB is not prevalent in New Zealand, thus
individuals were less likely to recognise symptoms. Other respondents, such as
the Kampuchean community representative, described particular sociocultural
beliefs, such as the transmission of TB only occurs within particular family
groups and leaves other families immune.
Other groups were aware that overcrowded housing was a
problem associated with TB. For example, the Phillipino representative suggested
that Doctors could help improve the treatment
of people by helping to reduce the overcrowding that often occurs with these
families, when two families may decide to occupy one house.
Several community representatives discussed the stigma
associated with TB, which affected their understanding of the disease. For
example, migrants who had recently arrived from countries with high levels of TB
and the older generation of the Pacific Island and Maori population (who could
remember when the incidence of TB was high in New Zealand) were reported to hold
high levels of stigma. However, the concept of stigma was not uniform across the
different community representatives.
Stigma was often interpreted as a fear of getting a disease
that was believed to be incurable and highly contagious. In other cases, stigma
was described as resulting in isolation of the affected individuals until
treatment has been completed. The Kampuchean representative reports that
the family will react to an individual who has
been diagnosed with TB by isolating him in different degrees because of the
significant fear that TB engenders for most Kampucheans.
Somali, Asian, and Maori community representatives reported
that stigma had been reduced with very simple health education stressing that TB
is curable.
Barriers to access to
healthcare services—Several barriers to accessing healthcare
services were identified by the community representatives. These varied from
issues around the high cost of accessing primary healthcare services to a
preference for alternative forms of treatment. Community representatives also
discussed reduced access to health services and relatively high levels of
unemployment among their minority populations.
Difficulty in accessing primary health services, such as
local general practitioners, was reported by the representatives from all groups
as one of the main reasons that healthcare is deferred.
All the representatives reported high levels of unemployment
in their populations, and consequently the consultation fee charged for each
visit to the primary healthcare service is not affordable for them. For example
the:
Various community representatives (such as the
Chinese, Maori, and Pacific Islanders) reported that individuals may not access
healthcare from a medical service because they choose instead to use traditional
healers. However, this was not the case for all communities with the Somali
representative describing that many recently immigrated Somalis who had
experienced high TB-related morbidity and mortality rates in their native
country preferred to seek medical attention from a health service at an early
stage of onset, rather than from traditional healers.
Service provision in the
healthcare setting—In the provision of health services, community
representatives were asked further about the difficulties their community
members experienced within the healthcare setting. Responses ranged from
articulating who should speak, who should be included in the consultation, and
the importance of following cultural protocols.
All community representatives noted that important cultural
differences exist between the different populations in the preferred styles of
health consultations. In the Somali and Asian
populations, community representatives described that communication with
the patient is normally undertaken through the head of the family. Whilst this
is normally a senior male, the family matriarch undertakes this role in the Cook
Island community.
Each community representative emphasised that consultative
care involves the entire family, though assuming different formats.
Nevertheless, there was a concern that involving the whole family may affect the
degree to which a patient may disclose health information in the health setting.
All community representatives reported that individuals
often feel unable to identify with a health professional who is not from their
own cultural background, and are uncomfortable in the health centre setting
generally.
Concerns about confidentiality result in individuals not
fully divulging their health problem and limiting the consultation’s
usefulness. Specific cultural protocols are often not understood or followed by
the health centre.
The Samoan representative described that
individuals need to be consulted and seen in a
familiar environment by nurses, healthcare workers and social workers who are of
their ethnic background and speak their language, in conjunction with the public
health nurse or physician who is treating them.
The Maori representative also stressed the importance for
continuity of care with the need for Maori nurses. Such nurses, the
representative stated, are better able to establish a relationship of trust and
communication by knowing different members of the family of the particular
individual, and also in being able to use the
symbols of the Maori culture to help increase someone’s knowledge about
this disease.
Amongst the Pacific Islander groups, there was a perceived
need for an ethno-specific health services, with the Cook Islander
representative stating a Cook Island primary
healthcare service is a very high priority but this aspiration is currently
being stifled by very inadequate available funding.
Communication barriers in the health consultation were
reported by the representatives of all the communities. The Samoan
representative describes that immigrants who are fluent in conversational
English also experience communication difficulties because they do not
understand the medical terminology used by medical staff.
The Pacific Island representatives identified that
communication difficulties may result in misunderstandings and confusion and are
a primary contributing factor to non-adherence. A lack of language-appropriate
written information on common health issues (including TB) and prescription
instructions were also identified by the Chinese, Somali, Kampuchean,
Phillipino, and Cook Island representatives. Each immigrant community
representative advocated the need for interpreters, with the proviso (for issues
of disclosure) that interpreters need to be acceptable to the family.
When discussing service provision, the issue of adherence to
treatment was also raised. Communities who were reported as having a high level
of knowledge concerning TB (either through direct experience either in the past
or from their home country) reported high levels of adherence to treatment.
Other community representatives (especially the Phillipino,
Chinese, and Kampuchean) said that their community members generally believed in
the efficacy of prescribed medication. The Kampuchean representative describes
that people in (her) community are very happy
to (take medications), and are generally very diligent about taking and
completing courses of medication prescribed to them. This appears to be a
reflection of the fear and anxiety that they hold about TB, coupled with the
vivid recollection of the people who died from TB in refugee camps, and in
Kampuchea’.
In this case, historical memory of TB from an
immigrant’s home country can result in individuals seeking and complying
to mainstream TB treatment. However, adherence to TB treatment and prescribed
medication more generally, was reported by the Pacific Island and Maori
representatives to be poor in their communities. They reported that reduced
adherence to medication can often be the result of ambivalence about the merits
of prescribed medication over traditional medications, by the adverse side
effects of TB medication, or as a result of insufficient or misinterpreted
medical advice.
The Maori community representative described that medication
can also be easily lost or misplaced in large mobile family households. In
addition the lack of transport creates difficulties in accessing medication from
pharmacies. Both the Pacific Island and Maori community representatives reported
that treatment is often discontinued prior to completion once the symptoms are
resolved.
DiscussionThis project explored the
commonalities and differences between the issues faced by different minority
community groups around TB and the provision of services in the Waikato.
Demographic changes (with the increased number of refugees with TB) make this
research timely for TB services in Waikato and for other predominantly rural
districts of New Zealand.
The study results reveal key themes around the signification
of TB beliefs, access problems, the need for cultural sensitivity via culturally
appropriate communication, and cultural practices and issues related to
adherence.
In approaching the health needs of these populations, it is
important to recognise both the social and cultural diversity, and the various
barriers they face in accessing health
services.16–18 Without this recognition
and further research, the development of health services will be
ineffective—leading to poor treatment outcomes, the failure to improve the
health of the patient, and failure to eradicate TB as a public health problem in
the Waikato district.16–17
In talking about TB with community representatives who spoke
as proxy respondents for their communities, this study does not claim to be
representative of the attitude of entire community groups, however it does
suggest some key themes and issues that require further and more systematic
investigation.
The use of data from proxy respondents has been well
canvassed in the literature and is often used in research that requires health
information to be collected by direct interview
methods.15 Where there are limited resources
for collecting large numbers of interviews, or where the index respondents are
unable to be interviewed due to sickness or cognitive impairment, the use of
proxy respondent has been particularly useful.
More recently, proxy respondents have been used as a means
to identify key issues for further investigation. However, the use of proxy
respondents is not without its pitfalls. For example, Nelson et al argued that
the item response rate is affected by the topic of the question, the degree of
details required, and the relationship of the index and proxy respondent to each
other.15
Further problems include over-reporting, under-reporting,
and misclassification of responses due to the specific characteristics of study
questions. Despite these issues, this study opted for the proxy respondent
approach for several reasons.
Specifically, the research represents an investigative
scoping approach, where preliminary attitudes and beliefs around TB were sought
to inform future research. The Waikato Ethics Board did not permit interviews to
be carried out with individuals who were affected by TB unless trained
translators were present. The funds of this project could not cover these costs
so it was decided to select community representatives who had a high level of
English skills.
We recognise that these individuals are not representative
of all members of their community and that they may well have had their own
intentions and motivations in agreeing to be part of this study. However the
researchers felt that given the circumstances, it was important to continue with
the interviews and that community representatives would be able to provide
important and culturally relevant information.
An important finding from the interviews conducted in this
study was that TB has a particular cultural context for different ethnic
community groups, related (in part) to their recent past experience of the
disease. Rubel et al, describe these cultural contexts succinctly as the
‘health culture’ of the patient, which they define as ‘the
understanding and information people have from family, friends, and neighbours
as to the nature of a health problem, its cause, and its
implications’.16
Other recent research indicate that understanding the
particular cultural background of a patient gives useful insight into health
decision-making behaviour and subsequently the degree of adherence to prescribed
treatment.17–18,19–20
Cultural differences are also reflected in the different
cultural practices for health consultations, including the different roles that
the family plays in these. This is an important issue for health services in
both identifying appropriate cultural practices and accommodating family
consultations. Family involvement in consultations also raises important issues
(including the confidentiality of disclosure between the patient and health
professional, and the appropriate care of the individual who may be experiencing
TB related stigma).
Interviews with community representatives suggest that
stigma related to TB is an important factor associated with non-completion of
treatment. Stigma related to fear of contracting an incurable disease, and of
being isolated from family, was described as affecting an individual’s
response to developing symptoms and the timing of their presentation at health
services.16–17,19,21–24
With appropriate education, community representatives also
noted that stigma was reduced through improved education about health issues, an
observation with clear and important implications for health service planning.
In developing effective health services for immigrant and
indigenous populations in a multicultural society such as New Zealand, it is
important to recognise that poor health outcomes (associated with populations)
have often been erroneously attributed to cultural factors
alone.22,25–26 However structural
barriers such as class, gender, and age have been shown to impact on the
delivery of health services to marginalised populations, such as those
documented here, in previous
research.21,25–26
There is a well-documented relationship between migrants,
low socioeconomic status, and poor health
outcomes.26–29 TB is an interesting and
appropriate case study for this due to the link between poverty, TB, ethnicity,
and the associated issues such as stigma in this life-threatening disease.
In this study, interviews with the community representatives
may indicate that (in comparison with the general New Zealand population)
minority groups in the Waikato experience reduced access to health services and
inadequate housing. Education levels were not mentioned by any of the community
representatives in this study and it is difficult to ascertain whether this is
relevant without further research. However, lack of the financial means to pay
for services, combined with associated transportation costs, were found to be
significant in explaining low attendance to health services.
In addition to barriers in accessing health services,
interviews with the community representatives also suggested communication
barriers by minority populations when utilising existing healthcare services.
Subsequently, the net result of health consultations were described as being
confusing, involving misunderstandings, and resulting in low treatment
adherence. Communication difficulties are also reflected in an earlier New
Zealand study, including a study of refugees in Porirua (Wellington region)
which concluded that the major unsatisfied health need for this group of
refugees was interpreting services.31
Health services in the WHD incorporate both ethno-specific
and mainstreamed health services. Ethno
specific health services have been developed outside of the confines of
the established health system for minority populations.
Mainstreaming services, on the other
hand, are health services to minority populations that are delivered within the
established health system.
Julian, in outlining the arguments for both forms, describes
that ‘basing service delivery on ethnicity tends to segregate and
marginalise migrants, but ignoring ethnicity and catering for migrants only
within general services can mean neglecting special needs and perpetuating
structural discrimination’.32
The last decade has seen the development of some
ethno-specific primary healthcare services for Maori. However the majority of
minority populations do not have easy access to ethno-specific primary
healthcare services. Interviews with community representatives, particularly
amongst the Pacific Island communities, declared the need for their own
ethno-specific primary healthcare services and community health based
organisations. In explaining why Pacific Island community representatives were
more forceful in their attitudes (concerning a need for such services) may be
related to the overall longer length of time that such communities have been
established within the broader society.
The development of such services for minority populations is
costly and there are various difficulties associated with determining
eligibility of the different communities for the development of their own
service. Previous research indicates that treating patients in the community
itself is a large step towards addressing the issues which lead to delays and
non-completion.33
Alongside patient and community education, utilising trained
community volunteers, makes treatment more accessible and decreases the problems
associated with stigma through the public nature of
treatment.33 As low adherence to prescribed
medication was an important finding of this study (related to low or
misinformation about TB treatment), health promotion activities aimed at
providing culturally relevant and accessible information, combined with
accessible service provision, would be the most appropriate
intervention.
Table 2. Key recommendations for healthcare delivery to
minority populations in the Waikato Health District
A
comprehensive professional interpreter service for primary healthcare
services,
A
national resource of reference material outlining appropriate cultural practices
for each minority population,
A
national electronic resource of health education,
Material
for each minority population, and
Pharmacy
systems which will produce drug prescriptions in English as well as in the
patient’s native language.
ConclusionBased on the findings of this
study, and on a review of relevant international literature, the
Refugee and New Migrant Strategic Plan –
2002 to 2007 may need to be modified further.13
Recommendations from this study are presented in Table 2.
Social and cultural diversity is an important issue for
health services in a multicultural society. This paper indicates that there is a
perception amongst community representatives that their minority population
groups experience disadvantage in accessing health services.
Whilst the development of ethno-specific health services
within a mainstreaming health service environment would require a substantial
amount of funds for relatively small population groups, simple measures such as
community and patient education (undertaken by trained volunteers from the
community) needs to be explored. Health services also need to recognise that
there are both similarities and important differences among the various African,
Asian, and Pacific minority populations regarding their understanding of TB and
of their approach to health services.
The implications of this challenge (improving access of
indigenous and immigrant populations to health services) for the current TB
control program in the WHD is equally relevant to TB control in other parts of
New Zealand and in other countries with a low national prevalence of TB.
Similarly the recommendations developed through this research may have equal
applicability as a means of achieving improved access to health services by
minority populations.
Author information:
Clif van der Oest,1,2 TB Medical
Officer; Richard Chenhall,1,3 Research Fellow;
Dell Hood,4 Public Health Physician; Paul M
Kelly,1,3 Associate Professor
1Menzies School of Health
Research, Darwin, Northern Territory, Australia.
2Department of Health and
Community Services, Darwin, Northern Territory, Australia.
3Institute of Advanced
Studies, Charles Darwin University, Darwin, Northern Territory,
Australia.
4Waikato District Health
Board, Hamilton, New Zealand.
Correspondence: Dr
Richard Chenhall, Menzies School of Health Research, PO Box 41096, Casuarina, NT
0811, Australia. Fax: +61 8 89275187, email: richard.chenhall@menzies.edu.au
References:
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