FAQ's

A: Eligible individuals, ages 18 to 45, living with a diagnosis of sickle cell disease, from across the US, may self-refer or be referred into the program.

A. Participants complete a pre-assessment questionnaire – the CROP (Connection, Relevance, Others, Practices) Spirituality Scale Assessment Tool, a twelve-question assessment tool regarding thoughts and ideas about spirituality. The other form is the Sickle Cell Disease Self-Efficacy Scale, a nine-question tool regarding day-to-day living with SCD. These same forms are completed again once they have completed the program to assess evidence of changes in their spiritual thinking and management of their sickle cell over the course of being involved in the program.

A. The program makes every effort to ensure that confidentiality is maintained for all participants’ personal information. Services are patient-centered, coordinated, comprehensive, and committed to quality and safety

A: In addition to individual one-on-on sessions, we provide optional monthly spiritual group sessions as an opportunity for participants to commiserate and develop peer support with other individuals with SCD. We have found one way of achieving group cohesiveness is for individuals to share their collective voices in the creation of monthly podcast series production called ‘Bloodline.’ The topics for these 30-45 minutes audio podcasts are participant-driven. They have described these session as, “informative but funny, sickle cell quirky, highlighting different people who have different lives with the same bloodline. – surviving and thriving together.”

A: To extend our reach and accessibility, PSSC utilizes virtual communication technology, to deliver both the individual and group sessions, allowing for scheduling options as we respond to participants when hospitalized or otherwise unavailable. Most one-on-one sessions occur by phone. Group sessions and podcast meet by virtual platform.

A: During one-on-one sessions, participants and chaplains determine their focus with the aid of a Spiritual Resource Guide created for this population to assist in guiding conversations while addressing the needs of participants. Topics include unhelpful thoughts, coping with negative emotions, stress, and illness.

A: Individuals are encouraged to meet every two weeks with their chaplain for 50-60 minutes. Ideally, a participant would complete ten sessions within five to six months from the time of enrollment. However, this time frame may be doable for some while others may need extended time to build a trusting relationship and address the many concerns they are managing.

A: Because helping to strengthen these young adults’ voices is a priority, PSSC provides space and opportunities for completing a document as an advance care planner. Completing this document, enables participants to communicate in writing to family, friends and health care providers their personal wishes as to what makes them feel supported, the decisions that bring them peace, what provides them the most comfort, as well as, how they wish to be treated, especially at times when they may not be able to speak for themselves – i.e., hospitalizations, strokes, and/or pain.

A. Critical to the successful implementation of spiritual care intervention are our dedicated chaplains, all currently  ministers. Chaplains are not assigned to more than two participants at a time. Each chaplain receives comprehensive education regarding SCD from the Sickle Cell Nurse  Educator including its inheritance, treatment, management, psycho-social and transition issues, etc.; and a certified Clinical Pastoral Educator addressing the spiritual and psycho-social pastoral needs, to enable them to work effectively with participants.

A. To be responsive to the needs of the participants, we provided the option for individuals to consent to participate and begin with spiritual support group and/or podcasting, before electing for a one-on-one session with a chaplain.

A. Our non-denominational services, are provided at no-cost to participants, are not linked to a particular religion nor requires adoption to any beliefs or practices of a faith community. Services are based on the idea of spirituality or relationship with a Higher Power, which aids the mind, body, and soul connection with everything around us.

A. The expected outcomes for this community-based spiritual resource are to increase/improve self- management of personal issues which may be a source of physical and emotional pain; to bring peace when facing the many different facets of life transitions; and to increase awareness of importance of how spiritual support relates to health care. It is hoped that the addition of spiritual care will assist participants increase adherence with medical treatment protocols, which ultimately may decrease emergency healthcare utilization, and enhance an overall better quality of life.

A. Project SPIRIT founded in 2015 began as multi-funded research projects, becoming incorporated in 2021 as a 501(c)3 community-based organization.