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Commentary on the paper by Yoong et al (see page 454)
The interface between ethnicity, health, and health care delivery is complex, and studying this area is known to throw up somewhat paradoxical findings. In this issue, Yoong and colleagues raise two important observations that we wish to comment on, namely the persistence of consanguineous marriage patterns in British Pakistani Muslim families and, in those families with children with deafness, their access to relevant health care services.1 We consider each of these issues—the first predictable and the second unexpected—in turn.
It is now well known among health professionals that consanguineous kinship patterns increase the risk of recessively inherited disorders such as congenital deafness. It is estimated that the birth prevalence of infants with recessively inherited disorders rises by about 7 per 1000 for every 0.01 increase in the coefficient of consanguinity (F). Among British Muslim Pakistanis, F is estimated at 0.0431 compared with 0.003 for most North European populations. But despite this knowledge being widespread within professionals, it is our impression that a large proportion of Britain’s Pakistani Muslim population remain unaware of the relation between consanguinity and adverse outcomes. This may go some way to explaining why consanguinity persists as a social practice in this community.
Our belief that the process of acculturation (whereby immigrant minorities begin to take on the characteristics of the host population) would rapidly lead to the demise of the acceptable kinship pattern has not as yet been realised. On the contrary our experience suggests that consanguinity is alive and well and is, if anything, on the increase. Given the significant increased risk of death and serious disability associated with consanguinity it is pertinent here to consider why this might be so.
It is certainly true that more needs to be done to make information on the risks of familial marriage patterns available to the target populations, and in this vein there is also a need for health services to think more creatively about how best to disseminate this information. The burgeoning Asian and Muslim print, online, and audio/visual media outlets, for example, offer new and exciting opportunities to engage meaningfully with these communities. Importantly, this use of specialist media outlets should be viewed as additional to the more traditional approaches, and not as an alternative to other outlets, as both are likely to help reach different sections of these increasingly heterogeneous communities.
There is also a need for health professionals to develop a far more sophisticated appreciation of why consanguinity exists as a social phenomenon, recognising that it offers several important advantages that cannot be dismissed lightly. Briefly, these benefits include a secure mechanism to retain family wealth and property within a confined group, as has been used to considerable effect by British aristocracy and the royalty. More important perhaps, in the British Muslim context, is the belief that marriage of a son or daughter to a blood tie offers greater prospect of security for ageing parents than that which can be expected of someone who marries outside the family.2
In order to have credibility among target populations, it is thus important that any health promotional interventions, aiming to reduce consanguinity, accurately reflect the potential advantages and risks associated with consanguinity and present this information in a non-judgemental fashion. The aim of such interventions must thus always enable families to make their own informed decisions in the light of accurate and unbiased information.
Even in cases where families do wish to move away from traditional marriage patterns (on account of an awareness of the health risks or for other reasons), this may not always be possible. This is because migration has, in the short term at least, fractured many social networks and therefore made it difficult to find suitable partners for offspring from outside the extended family. This may also in part explain the observed increases in consanguineous marriages
Taken together, these factors suggest that the proportion of British Pakistani Muslims in consanguineous relationships may continue to increase in the short term. However, as the message of the risk of adverse outcomes in children becomes increasingly appreciated and, furthermore, as these communities develop established social infrastructures, it is likely that there will then be a rapid transition to less introverted marriage patterns. The emergence of Muslim nursing homes and marriage agencies is, we believe, indicative of this future trend.
Improving access to health care and ensuring equitable access for all sections of the population are national priorities for the NHS. While many research teams have highlighted the problems of poor access in relation to minority ethnic communities, there have been relatively few reports of success in ensuring delivery of high quality care to these communities, who are typically those most in need. There have furthermore been a number of reports of difficulties in delivering genetics counselling to affected families. The paper by Yoong et al is as far as we are aware the first to show equitable access to paediatric audiology and genetics services for Pakistani Muslims, and therefore makes welcome reading about a problem that was highlighted as far back as 1980.3 Importantly, it underscores the message that, with concerted effort and resources, it is possible to develop services that meet the needs of diverse population groups.
The main barriers to equitable provision of care are structural, reflecting the fact that the NHS was originally developed to serve a relatively homogeneous population. The increasing ethnic, religious, and cultural diversity of British society has therefore posed a considerable challenge to those involved with planning and delivering care, although, as shown by the Stephen Lawrence enquiry, this problem is not exclusive to the NHS. Attempts at overcoming these barriers have hitherto often been misguided and/or simplistic with the risk of (unintentionally) alienating the intended recipients of improved care.
Overcoming barriers to facilitating access to care therefore requires an in-depth appreciation of the sociocultural context in which strategic interventions are framed.
According to Kai,4 over 7% of the NHS workforce is from minority groups. If this group was empowered to reflect or share their expertise, standards of health care for this vulnerable population could be improved. Cultural competence is an evolving process that depends on self-reflection, self-awareness, and acceptance of differences.5 Success in this programme has been achieved by beginning to understand this concept. Also needed is a commitment to working in conjunction with the intended recipient communities so as to ensure that any intervention developed is culturally sensitive. The multi-faceted nature of the interventions that have taken place in Bradford—consisting of population screening for deafness in neonates, parental education, and involvement and training for health professionals into ways of working effectively with diverse populations—reflects this holistic informed approach to enhancing service delivery with excellent results. All this against a background of high failure rates of attendance for appointments among the Muslim population.6
While there is an increased uptake of genetic services among the Bradford Pakistani population, this appears not (yet) to have translated into reductions in the incidence of congenital deafness; more unexpected and puzzling is the reason why increasing attendance for audiology services has resulted in substantially greater uptake of cochlear implants than that observed in the white population. This must, however, remain a question for another day.
Commentary on the paper by Yoong et al (see page 454)