The number of patients diagnosed with sickle cell disease in the UK is increasing making it of public health relevance. Immigration is changing the demography with more adults immigrating to the UK from Africa and the Caribbean, some with sickle carrier status or with established SCD.
The NHS has shown increasing commitment to the diagnosis and management of patients with SCD over the recent years with the establishment of routine screening for sickle cell and thalassaemia and provision of guidelines for the management of sickle cell patients. However the full benefits of these services depend on their utilisation.
The majority of those affected by SCD are from the ethnic minority population. There is a large evidence base to show that disparities exist in access to healthcare services for ethnic minority populations in the UK [13], highlighting the need for a culturally appropriate means of health education and health promotion.
Religion plays a prominent role in the social and cultural life of individuals from the ethnic minority population with people identifying with a variety of faith-based groups where their leaders have a considerable measure of influence built on a combination of trust and culture. Whilst not being the only outreach medium for health education the faith community is characterised by a large population of people who show commitment, effective social and community support, socio-cultural belief systems acceptable to the groups and some element of trust in their leaders. Thus religious leaders provide potential access to this underserved ethnic minority population for health promotion, health education and improvement in utilization of health services.
The findings from the studies in this review indicate a positive outcome for the health interventions delivered through faith organisations irrespective of the mode of delivery of the intervention, whether through collaboration with health care establishments or through trained lay members of the religious community. The success of these interventions may have little to do with specific religions but more to do with the existing and effective social support system existing within faith communities and the fact that they are more likely to commit to healthier lifestyle changes or interventions. These attributes increase the chance of success for health interventions such as vaccination programmes. They may also introduce bias; thereby confounding factors during evaluation of the effects of such interventions as observed in the study by Yanek et al [19].
Some of the studies demonstrated that involvement of religious leaders were influential in encouraging the utilization of available health services, albeit indirectly. The involvement of influential Islamic scholars and their legislation on the upper limit of permissibility of pregnancy termination enhanced the utilization of health services in Pakistan and Saudi Arabia. [15, 16]. In the authors' experience individuals who were hesitant in using prenatal diagnosis were relieved to learn that Islam permitted termination of pregnancy under special circumstances and this had resulted in increased utilization of the services. Involvement and enlightenment of religious leaders on health interventions have the potential of encouraging the use of these services among their members especially if they are aware of the endorsement by their leaders.
The success of health-related interventions correlates directly with the attitude and commitment of the religious leaders to the project. Most of the studies indicated that religious leaders were willing to be involved in health related projects however some leaders may be hampered by very busy schedules, limited resources or even a distrust or suspicion of the health system or its intensions towards members of their congregation [25]. These challenges would need to be taken into consideration to ensure favourable outcomes for future interventions.
The role of religious leaders as perceived by the followers was highlighted. Their involvement in general and reproductive health programmes was perceived to be essential for the programmes' effectiveness [23]. In a telephone survey to assess barriers and motivators to blood and cord blood donation in young African-American women 17% of the participants would donate blood if encouraged by their religious leaders [26].
However, on crucial personal issues such as decisions-making about prenatal diagnosis and abortion people tended to defer to their individual faith, morals and information from relevant health personnel before making their decisions [22]. Religious leaders were perceived to be relatively uninformed about their situations from a health or scientific perspective. Religious representatives however thought otherwise, emphasizing that their role was to support people rather than tell them what to do [27].
The findings of this review are consistent with the review on effectiveness of health programmes in faith based organisations by De Haven et al [28]. Unlike this review, however, the studies were restricted to faith based organisations in the United States and were all within Christian settings. The similarity of the findings indicates that the positive health outcomes of faith based organisations are not limited by religion or geographical location.
One of the areas to explore the potential influence of religious leaders is in helping parents of newly-diagnosed SCD patients to cope with and accept the fact of the diagnosis. Many parents tend to go through a period of denial which could last from a few weeks to many years and this could potentially delay the commencement and use of antibiotic prophylaxis for their children putting them at risk for infections and other consequences.
The access provided by faith organisations for health education cannot be over-emphasised. Genetic counselling provided within a culturally sensitive environment would be helpful especially since there is a high proportion of individuals with carrier status for sickle cell disease (1 in 10) and some of them may have moral and religious reasons for not considering prenatal diagnosis or termination of pregnancy [29]. The consensus of the respondents in the aforementioned study was that SCD was best controlled through effective genetic counselling rather than through prenatal diagnosis and selective abortion of the affected pregnancies.
The potential for educating communities at risk for SCD about the condition and the role of blood transfusion in the management of haemoglobinopathies is one of the major considerations for this review. Altruism and the awareness of the need for blood are major motivators to donate blood [30]. Although data from the UK are not readily available communication with relevant staff of the National Blood Service at Tooting, London has confirmed that the proportion of blood donors from African-Caribbean origin was very low compared with Caucasians. Given the potential risk for alloimmunisation in the absence of phenotypically matched red blood cells there is need for establishment of ethnic blood donation drives. The success of The Sickle Cell Sabbath and the Charles Drew Blood donation programmes confirm this stance [18, 31]. Grassineau et al [32] reported the utilization of an anthropologic approach and cultural mediation to improve minority blood donation within a migrant community. There are in existence some local or regional blood donor drives in the UK. It is our belief that involvement of religious leaders and faith organisations would extend the reach and outcomes of such interventions.
Another potential benefit of the combination of education about SCD and the influence of religious leaders is combating the issue of stigmatization to which patients with SCD and their families are subjected.
Religious leaders are a very heterogeneous group with variations in levels of education and medical knowledge, cultural beliefs and practices, acceptance of science or perceived 'western' or modern practices, biases, variations in interpretation of their holy scripts etc. They share some of the concepts and beliefs about disease causation and inhibitions held by their members e.g. views on blood donation or transfusion. Thus there will be the need for education, enlightenment and sharing of information with religious leaders using culturally-sensitive and appropriate media in order to channel their influence on their members towards positive outcomes for health.
An important observation from this review is the paucity of published studies from the UK on sickle cell disease, haemoglobinopathies, blood compatibility issues and the role of religious organisations or religious leaders on health-related matters. There is need for more research to be carried out in the UK to add to body of evidence available locally and for purposes of comparison.
Limitations
There were limitations to this review. Some of the studies available were of poor methodological quality, small sample size and designs that do not provide strong quality of evidence. Publication bias cannot be ruled out considering that most of the reviewed data were drawn from published studies. Other potential sources of bias include restricting the review to studies published in English language thus missing out on any relevant studies published in other languages. The authors acknowledge that we may not have exhausted all the publications relevant to this review but we are of the view that the findings from the studies not included may not differ significantly from the present results.
In spite of these limitations the findings of the review has shed some light in answering the research question about the influence of religious leaders and faith organisations in haemoglobinopathies.