SCDAA 46th Annual National Convention

Abstract

Authors:
Ms. Jennifer Brereton- Children’s Hospital of Philadelphia, Ms. Trudy Tchume-johnson- The Children’s Hospital of Philadelphia, Ms. Tahira Austin- The Children’s Hospital of Philadelphia

Background: The Comprehensive Sickle Cell Center at Children’s Hospital of Philadelphia (CHOP) provides care for over 1,000 children diagnosed with sickle cell disease (SCD). Children with chronic illnesses, such as SCD, are at a higher risk for developing social/emotional issues. Currently, individual and family therapy is offered in our clinic by our psychologist, but there has not been any recent attempts to offer services in a group format.
Objective: To establish and offer a group program to our patients with SCD. The group was designed to target patients in the middle school age range (11-14), and to provide these patients with psychoeducation about SCD, support around their illness, an opportunity to connect with others living with SCD, and to teach coping and alternative pain management strategies (e.g. yoga). We also wanted to look at various ways to inform families about the groups and to increase participation and engagement from the community.
Methods: Approximately 2 months prior to the start of the group, families with patients in the targeted age range were approached in clinic about the group. A flyer was developed for the group which was distributed in clinic and was sent to families via standard mail as well as emailed through the Center’s list serve. Reminders were sent out on a weekly basis. The groups were run by the Center’s pediatric psychologist, licensed social worker, and community health worker. Group participants were provided with dinner, reimbursement for parking/transportation, yoga mats, water bottles, and gift cards for their participation. Although parents were not included in the group, they were provided with a handout for each group outlining the contents of what was covered, as well as tips for parents on how to continue related discussions at home with their children. Pre- and post-assessments on SCD knowledge and coping strategies were also obtained. Group format was as follows:
Session 1: SCD Basics & Living with SCD
Session 2: SCD Psychoeducation & School/Peer Issues
Session 3: Pain and Coping with SCD
Session 4: Coping with Pain Continued & Introduction to Yoga
Results: The group was held for 4 evening sessions on consecutive weeks in June. The initial session consisted of 5 participants, sessions 2 & 3 had7 participants and the final session had 9 participants. The pre- & post questionnaires were administered to 7 of the 9 participants. The questionnaire revealed the following; 5 out of 7 participants improved their scores, 1 remained the same and 1 decreased.
The participants were engaged and appeared to enjoy the interactive ways of learning about their illness. Positive feedback was received from all group members, as well as their parents. Families expressed interest in having additional group sessions.
The Center is going to send out a survey to all patient families inquiring about desired times and frequencies of groups in the future in order to try and establish an ongoing group program during the academic year.
Conclusions:
Addressing some of the barriers related to attending group (e.g. transportation, parking, food), as well as providing participants with some rewards, may have helped with group attendance and engagement. Some families who did not participate expressed interest in the group, but were not able to make this particular group session due to scheduling conflicts. In addition, caregivers of children in other ages also expressed interest and inquired about groups for younger and older patients. However, the majority of the families in the targeted age group did not respond to the invites so additional methods of increasing participation and engagement need to be explored. The patients and families that did participate, expressed positive feedback about the group, and the majority of the participants who completed pre- and post-assessment measures related to SCD knowledge improved their scores. Due to the interest and engagement of this pilot group, the Center will be offering additional groups in the fall, as well as a yoga group (4 sessions) during the month of August 2018.