Investigating the Relationship between Children , Depression , and Pain in Black Women with Sickle Cell Disease ( SCD )

Medical advances in obstetrics and hematology have encouraged researchers to investigate the reproductive risk in women with Sickle Cell Disease (SCD) attempting motherhood. However, few hematological studies have been completed focused specifically on the reproductive mental health of Black women with SCD. Historically women with SCD have been guided away from childbirth under the premise that they were not emotionally or physically capable of managing children. One question that remains unclear, from the limited research available in this area, is whether the presence of children serves to influence mood and pain in Black women with SCD. The current study examined the effects of the presence of children on self-reported pain and depressive symptoms and the relationship between pain and psychological functioning in African American women with SCD. Self-reported rates of depression, pain intensity, and pain severity were evaluated in 70 African American females with SCD. Results of Analysis of Covariance (ANCOVA) did not find differences in reported mood or pain between women with and without children. The current study serves as an initial observation upon which replication of the current findings and future prospective studies can be conducted. The study may ultimately mature into an area of research that guides reproductive decision-making for women with SCD and their doctors. DOI : 10.14302/issn.2372-6601.jhor-14-499 Corresponding author: Christopher L. Edwards, Ph.D., BCB, IABMCP Associate Professor, Medical Director, Biofeedback Laboratory and Pediatric Neuropsychology Service, Director, Chronic Pain Management Program, Duke University Medical Center, 4309 Medical Park Dr. Durham, N.C. 27704. Tel #: (919) 684-6908 Fax #: (919) 668-2811; Email: christopher.edwards@duke.edu


Introduction
The experience of motherhood is differentially defined and experienced as a function of factors such as culture, race, religion, age, and gender.For example, men may view the construct of "motherhood" quite differently than women 1 , or post-menopausal women may view the construct differently than women still in their child bearing ages 2 .Nonetheless, within the diversity of the construct of motherhood lies the commonality of an intimate kinship experience for the purpose of facilitating the rearing and maturation of offspring within societal guidelines.There is a multitude of factors that influence how motherhood is manifest, but few studies have ever explored the impact of motherhood on African American women with a genetic disorder such as Sickle Cell Disease (SCD) 1 .The process by which women with SCD decide whether to conceive a child or the impact of having a child has yet to be explored.
Prunty and colleagues (2008) 1 defined the motherhood decision in the family planning framework as the choice to forego, start or enlarge a family.
Women with illness and diseases have often viewed motherhood as a risky venture due to health-related concerns impacting the physical conditions of baby and mother, fear of the baby inheriting the illness, and risks associated with medications to manage the illness.
Women with chronic illnesses are sometimes made to feel irresponsible for their desire to want to experience motherhood 3 .This could result from the fact that many physicians and providers of care are not very knowledgeable on the psychosocial processes that promote the desire for motherhood or the consequences of motherhood on clinical outcomes.Research has found that many primary care physicians lack the basic understanding of the principles of genetics ultimately leading to the potential of providing inaccurate information to families regarding their genetic risks 3 .
SCD is an autosomal recessive blood disorder 4 with a myriad of symptomatology that collectively affects individuals psychosocially, physically, and psychologically The current study examines SCD-related pain severity and intensity as well as depressive symptoms in women with SCD as a function of having or not having children.More specifically, the study posits that, among African American women, those with SCD and children will have higher levels of self-reported pain and depression compared to women with SCD but without children.The decision to study women with SCD was made for the following reasons: (1) sickle cell affects African Americans at an alarming rate, with one in every 375 African Americans in the United States having SCD 7 ; (2) very little has been published in the field of women's health with SCD and depression; and, (3) there is increasing evidence that SCD is an excellent model to study factors that influence African American health.The Symptoms Checklist-90 Items-Revised (SCL -90-R).

Data Analyses
Data from the participants were sorted into two groups-women with children and women without children-to create the primary independent variable for the current study.  1 for details of the frequency distribution of relational status).
The majority of participants were working full-time (30%) while almost 1 in 5 participants was on disability.
Nearly two-thirds of patients (N=42) reported living in a house, a little over one-third (N=23) in an apartment, and approximately 4% reported other living arrangements.Participants reported an average of 2.54 ± 1.30 other occupants lived in their residence.

Status
The influence of age was evaluated on each of the dependent variables of interest.Using linear regression modeling, it was found that increased age trended toward significance as a predictor of depression as measured by the SCL-90-R (p=.09) and was a significant predictor of pain severity (p=.02).Age was not a significant predictor of current pain intensity (p=ns).As such and in the context of this finding, subsequent regression analyses were covaried for age.
It was hypothesized that women with SCD who had children would report greater intensity in depression and pain than would women with SCD but without children.The results of linear regression analysis predicting depression as measured by the SCL-90-R from the number of children and covaried for age revealed that the number of children was not a significant predictor of depression (p=ns).Similarly, it was found that the number of children covaried for age was not a significant predictor of current pain intensity (p=ns) or pain severity (p=ns).
A subsequent regression analysis was performed in order to more closely examine if depression, as characterized in a more traditional psychological and affective manner, would be predicted by the number of children of a woman with SCD.The SCL-90-R measures depression on the more physiological terms whereas the BDI characterizes depression in more psychological terms 24, 25 .Depression as measured by the BDI was not predicted by the number of children a woman has even when covaried for age (p=ns).
In order to more closely examine whether pain intensity ratings, as averaged across a week and then a month, were predicted by the number of children a woman had, age was covaried in a linear regression analysis.It was found that the number of children was not a significant predictor of pain averaged across time.
Age was not a significant predictor for level of depression or pain intensity.

Discussion
In They concluded that there were no differences between women with MS who had and did not have children.
The limited research devoted to examining the concept of motherhood for women with SCD notes that high value is placed on the role of motherhood in the African American community 30 .Asgharian and colleagues (2003) 30 and Hill (1994) 31 found that the disease did not affect patients' desires to have children and that they saw their reproductive decision as an assumed part of adult life.Hill (1994) 31 concluded that motherhood was one of the "few-status-attaining and satisfying options" available to women with SCD that may be economically disadvantaged (para.43).
Reproductive decisions to procreate may mirror the cultural values and mindset in which a woman is

Design
The current study represents a cross-sectional survey evaluation of first-year data collected as part of a longitudinal study of the interaction among psychosocial, medical, and sociodemographic factors in predicting pain and medical outcomes in patients with SCD.All participants were given and signed informed consent, and the study was approved by the Duke University Institutional Review Board.Participants Subjects consisted of 70, ages 18-75, Black female patients with SCD recruited from the Comprehensive Sickle Disease Center at Duke University Medical Center.Individuals were excluded from participation in the study if they were actively in an acute episode of pain or other urgent medical crisis at the time of the clinic visit, had been diagnosed with an eating disorder, or if they were unable to read and comprehend the written instructions for testing.Patients were also excluded from analysis if they had a Freely Available Online www.openaccesspub.org| JHOR CC-license DOI : 10.14302/issn.2372-6601.jhor-14-499Vol-1 Issue 2 Pg.no.-17 significant diagnosis other than SCD (severe mental retardation, etc.).Measures Pain intensity.The Short-Form McGill Pain Questionnaire (SF-MPQ).The Short-Form McGill Pain Questionnaire and a visual analogue scale (VAS) were used to measure pain intensity 23 .The SF-MPQ is structured to assess qualitative and quantitative aspects of pain, including location, intensity, quality, and temporal dimensions.Participants were asked to rate the current intensity of each pain-related adjective by circling "none, mild, moderate, or severe."Participants also rated the items on a 10-point scale.The VAS consists of a 100-mm line with "no pain" written at one end and "worst imaginable pain" written at the opposite end, and was used to assess spontaneous pain.The distance in millimeters from the "no pain" end to the location of the mark gave a measurement of the pain.In the current study, the results were presented for all 4 composite items from the SF-MPQ.Two of the variables were subscales (sensory and affective) of the SF-MPQ.One variable was the VAS.The final variable, the present pain index (PPI), is a single-question summarizing the patient's pain experience.The measure has demonstrated validity and reliability with multiple pain populations.Intraclass correlations, as estimates of reliability, for the sensory, affective, and average pain scores, are 0.96, 0.95, 0.88, and 0.89, respectively.34.There is a very high correlation between scales of the long and short forms of the McGill Pain Questionnaire.Depression.

Freely
Available Online www.openaccesspub.org| JHOR CC-license DOI : 10.14302/issn.2372-6601.jhor-14-499Vol-1 Issue 2 Pg.no.-18 Procedures All patients were consented and enrolled individually during routine visits to hematology clinic.Patients were identified by the study hematologist as suitable for participation based upon the patient's ability to read, and their characteristics matched against exclusion criteria.They were then approached by study personnel about participation.All patients were given a brief verbal overview of the study and to inform them that we would be conducting a review of their historical patterns of healthcare utilization from their medical records, and then were allowed to read the consent forms.Each subject was allowed to ask questions and gain clarification before signing consent.Subjects were then provided a copy of the survey, moved to a relatively quiet or isolated portion of the waiting room when possible, and given instructions for completion of the survey by a member of the study team.Additional clarification or instructions were given to patients as requested.Once complete, the survey was collected and an informal debriefing was provided.
embedded.Placing such high esteem to motherhood may influence some female patients with SCD to pursue pregnancy in order to gain social status or other intangible gain.In contrast, their doctors may recommend that they not have children for fear that they will stress their physical, social, and economic resources, and may increase the likelihood of pain or negative emotional consequences32 .The current study suggests that irrational fears of providers or unsubstantiated exuberance from patients are unreasonable factors on which to base fertility decisions for women with SCD.Despite multiple disparities in reproductive risk factors in African American women, our initial findings do not support denying the option of children for women who have SCD, unless overwhelming medical factors are present.We hope that the current research which does not show differences in depression or pain, is used to initiate dialogue and conversation about issues of fertility and factors that should influence fertility decision-making in Black women with SCD.

-license DOI : 10.14302/issn.2372-6601.jhor-14-499 Vol
5,6,7,8,9,10 .Within the Unites States on an annual basis, this debilitating blood disorder is responsible for approximately 113,000 hospitalizations and $488 million dollars in hospitalization costs 11 .SCD is the most common inherited blood disorder in the United States 6.11 and disproportionately afflicts individuals originating from the sub-Saharan African region, but also affects individuals of Caribbean, Mediterranean, Hispanic, Native American, East Indian, and Eastern Asian ancestry 7,9,12,13 .Today, it is estimated that more than 80,000 individuals have SCD in the United States 14 .(Continued on page 16) Freely Available Online www.openaccesspub.org| JHOR CC-1 Issue 2 Pg.no.-16