PROJECT SPIRIT SICKLE CELL - PSSC
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Mission Statement
Project SPIRIT provides awareness of sickle cell and spiritually supports individuals as they explore their personal beliefs, navigate medical and life transitions, as well as the challenges of living with sickle cell disease.
About This Cause
Project SPIRIT* Sickle Cell (PSSC), Inc., a 501(c)(3) organization, incorporated in 2021, is community-based spiritual resource that supports young adults with sickle cell disease (SCD). According to the Centers for Disease Control and Prevention (CDC), SCD an overlooked public health issue, affects approximately 100,000 Americans; currently one of every 365 African American births and one of every 16,300 Hispanic American births result in a child born with SCD. SCD is a painful and debilitating genetic condition most commonly affecting persons of African ancestry; however, individuals of ethnic groups from Mediterranean countries including Greece, Turkey, and Italy, as well as the Netherlands, the Middle East, the Arabian Peninsula, India, Spanish-speaking regions in South and Central America and parts of the Caribbean, may also develop SCD. Symptoms include chronic fatigue, anemia, fever, strokes (in children as young as 6 years of age), and infection. Very severely painful episodes require frequent blood transfusions, emergency room visits and/or hospitalizations. Although first discovered in 1910, currently there is no universal cure. The combination of quality health care and medical intervention, has increased average life expectancy from 20 years to 38 years for males and 42 years for female; some SCD patients live well into their 70’s and 80’s. Project SPIRIT* (*Sickle cell Pastoral Intervention Reaching Individuals in Transition), provides spiritual psycho-social support and care to nurture and enhance both the spiritual life and overall well-being of young adult participants, as they navigate health and life challenges inherent in transitioning from adolescence to adulthood, adjusting to adult health care, and discovering their own sense of identity. We provide no-cost non-denominational services, that are not linked to a particular religion. Participants are not required to adopt beliefs or practices of a specific faith community but are introduced to the concept of spirituality—a relationship with a Higher Power, which aids the mind, body and soul connection with everything around us. This holistic approach to healthcare meets the goal of assisting participants to not only healthily survive but to thrive. PSSC draws on our historical research, begun in 2015, into the type and form of spiritual support young adults’ desire. Because our early participants described themselves as less religious and more spiritual, we designed PSSC to provide a bridge between the facets of medicine, community, and spirituality, that assists participants working through the realities of life, death, & hope. As such, we offer chaplain services to participants during hospital stays and to those receiving out-patient services because of experiencing acute distress or life-threatening circumstances. By acting as a bridge between medical professionals and participants, chaplains become part of an all-inclusive care model... “Genetic counseling + physiological counseling + pastoral/spiritual care + community = collective impact for participants.” PSSC also provides spiritual resources in the community. that address participants’ practical needs, enabling them to deal with and minimize their internal stressors, replace negative thinking with hope, and minimize self-destructive behaviors that may stand in the way of their health and well-being. We recruit individuals, aged 18 years and older living SCD nationally and inter-nationally, from all races, ethnicities, and socioeconomic backgrounds. These transitioning young adults have many needs. For example, as they transition from pediatric to adult health care, these young adults are most likely to be lost to follow-up, putting them at a higher risk for early mortality. They are also at a critical juncture in their spiritual development --seeking, exploring, and questioning what spirituality is, as well as the role spirituality can and does play in their overall well-being and quality of life. The needs of these participants are great and somewhat demanding, but research confirms, that these young adults are hard to reach. They often lack confidence in speaking up for themselves in overwhelming medical and religious institutions and systems. However, life transformations can only occur when an individual is able to hear and discern their personal spirituality in the midst of upset and distractions. PSSC is prepared to meet participants’ needs through one-on-one sessions with an assigned chaplain, who provide individual and group support services. During our research, focus group participants shared that is was of utmost importance to have chaplains who looked like them and who were knowledgeable about sickle cell disease. Thus, we have enlisted a diverse group of experienced, and willing chaplains to provide services. We host monthly chaplain meetings to enable chaplains to effectively work with participants. During these meetings, chaplains receive comprehensive education regarding SCD from a Sickle Cell Nurse Educator on topics including inheritance, treatment, management, and transition issues; and from a certified Clinical Pastoral Educator (CPE), addressing the spiritual and psycho-social pastoral needs. During one-on-one sessions, chaplains and participants work together to address negative emotions and thinking and look for the positives. They also complete a living will/health proxy/end-of-life planning document designed to communicate in writing to family, friends, and health care providers. In the document, participants articulate what makes them feel supported, what decisions are to be made on their behalf, what brings them peace in turmoil, and what provides them most comfort when they are miserable. This document helps participants voice how they wish to be treated especially at times when they may not be able to speak for themselves. Although PSSC participants find the one-on-one support of their chaplains to be extremely valuable, they also report on the importance of their interactions with other SCD-affected young adults. We address this need through three popular strategies. First, PSSC chaplains host monthly spiritual support groups that provide participants with an opportunity to share their struggles, successes, and strategies with one another. Finally, interested participants can share their insights and provide input about PSSC’s structure and services through membership in the project’s Young Adult Advisory Group. Our overall goal is to provide spiritual care interventions and resources to support participants in working through the realities of life, death, hope and sickle cell disease. Milestones are reached when participants demonstrate increased awareness for the importance of spiritually and sickle cell self-efficacy or how much personal expectations and effort will be expended when facing obstacles and undesirable experiences, as evidenced by changes assessed through pre- and post- questionnaires: 1) The CROP (Connection, Relevance, Others, Practices) Spirituality Scale Assessment Tool, a ten- question Likert scale assessment tool to understand their thoughts and ideas about spirituality; and 2) The Sickle Cell Disease Self-Efficacy Scale, a nine-question Likert scale about day-to-day living with SCD, Currently there are no other similar services provided to the sickle cell community. PSSC, designed to fill a void in the lives of young adults living with sickle cell disease, has vigorously promoted its existence and ability to provide much-needed spiritual care to other national sickle cell healthcare centers, community-based organizations, individuals, and families. The greatest impact has been for the participants, who have created a trusting spirit filled community, as they work through addressing the negative forces that may be sources of pain or trigger a crisis. In addition, PSSC has provided an awareness of sickle cell disease and the struggle of these young adults to a wider audience. Our supporters, collaborators, board members, volunteer team members, advisors, and chaplains are committed to the continued provision of services that will increase the quality of life for young adults living with sickle cell disease.