From Discussions VOL. 2 NO. 1
Healthcare Access Implications and Psychosocial Effects of Sickle Disease
In addition to equalizing access via changing healthcare personnel attitudes and perceptions toward sickle cell patients, one must also consider the need to provide external healthcare services that dictate and impact what happens at the clinic—and sometimes even whether or not the patient comes to the clinic in the first place. Since many sickle cell sufferers are from a lower socio-economic group, healthcare providers must understand how transportation problems, economic problems, or daycare problems greatly influence utilization of, and hence access to, medical services.
The availability of emotional and social resources is also crucial, since the individual's experiences with episodic pain crises could often affect the emotional life of the patient (Ohaeri, et al., 1995). For instance, sickle cell patients have been shown to experience high levels of anxiety in regards to their illness (Chestnut, 1994). Other challenges associated with sickle cell disease that can result in psychosocial difficulties include growth retardation, behavioral problems, learning problems, and possibly a decreased IQ compared to their peers (Malach, et al., 2002). Moreover, sickle cell disease children are more likely to report social impairment such as restriction in their play and domestic activities, feeling inferior to others, having bad luck, fear of under-achievement in life and fear of potential early death than both the control groups with bronchial asthma and with some acute medical illness (Tunde-Ayinmode, 2005). One needs to understand that social issues like educational attainment, employment status, and social networks are important determinants of illness course and care-seeking behavior.
Here, we see the benefit of building support systems such as sickle cell self-help and support groups. However, though I see Dr. Acharya briefly addressing these concerns during the examination, I think these patients would benefit if a more comprehensive, multidisciplinary, division-of-laborapproach was implemented. As Trzepacz, et. al (2004) suggests, vigorous screening programs for mental health programs should be included in the routine care of children with sickle cell disease, and psychosocial intervention research should be implemented to ameliorate problems for the children at greatest risk. Comprehensive sickle cell programs have played a role in the reduction of morbidity and mortality "by providing easily accessible healthcare services administered by individuals knowledgeable about the disease and its complications" (National Institutes of Health, 1995, p. 5). Ideally, I believe that a comprehensive care clinic, much like the hemophilia clinic I have been participating in, consisting of hematologists, occupational therapists, social workers, psychiatrists, and specialized nurses, would enable one to provide early diagnosis, preventive health maintenance, early treatment of life threatening complications, and development and implementation of new treatment modalities for young sickle cell patients. This multidisciplinary approach, where bio-psycho-social issues are dealt effectively under one umbrella, not only allows whole teams to efficiently work together with the patient to reduce morbidity and mortality, but also do so while increasing quality of life psychosocially. This, to me, is true access to healthcare.
I hope that this paper has conveyed the point that "access" to healthcare may have a far broader meaning than simply having insurance and/or the ability to pay. Access can be translated to the lack of an adequate amount of medical professionals who can help to create a feeling of empathy and belonging, to social and health policies which often do not include adequate numbers of multiculturally competent persons in the policymaking process, to funding for research and facilities which most often reflect a disproportionate concern for issues of minority health, and even to provider-patient communication. Thus, treatment programs that are going to be effective in treating ethnically and culturally diverse individuals indeed must stress open communication, convenience, ethnic and cultural sensitivity, caring, and concern—qualities that I have seen firsthand with Dr. Acharya in dealing and interacting with sickle cell families.
Physicians construct access based upon moral perceptions of the patient and determinations of what constitutes a life well lived. Coupled with the lack of knowledge about sickle cell disease, one of the problems with sickle patients is that health care professionals make a connection between African Americans using drugs and existing negative stereotypes. If ease of access and understanding of the medical system are so crucial, there is also a need for broader education and exposure to the medical system for patients in times other than medical crisis, such as for much-needed psychosocial services. It is apparent that more research needs to be done in an effort to explore how patients feel their ethnic and cultural characteristics influence the availability and quality of healthcare service they receive.
Not many people will view qualities such as empathy and compassion as means of achieving objectivity with patients, but I argue that these are important skills to employ when one wants to give the best possible treatment one can to his/her patient, unfettered by racial, cultural, or socio-economic stereotypes or stigmatizations that exist. To do otherwise will mean that one is not providing true equal access to healthcare. I firmly believe that education, research, multicultural competence and sensitivity, as well as hands-on experience, resulting in changes in attitudes and behaviors, will ultimately lead to a more empathic approach to the sickle cell patient.
I would like to give special thanks to Dr. Suchitra Acharya, MD and Dr. Donna M. DiMichele, MD at New York Presbyterian Hospital for taking me under their wings and allowing me to participate as part of the pediatric hematology and sickle cell chronic care clinic team for the fall/winter of 2006.This rewarding experience would not have been possible without you. Deep gratitude also goes out to Dr. Sam Beck, PhD, my professional advisor at Cornell Weill Medical College for his direction, inspiration, and continuing support. Each one of these mentors has imparted great wisdom and insight with their knowledge and understanding of biomedical ethics. I am grateful to have them in my life.
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